Actively Dying: The Creation of Muslim Identities through End-of-Life Care in the United States 2020038582, 2020038583, 9780367459437, 9781003026167

Table of contents :
Cover
Half Title
Series Information
Title Page
Copyright Page
Dedication
Table of contents
Note on language
Acknowledgments
Preface
Introduction: Actively dying—A medical phrase and a framework for analyzing end-of-life care and Muslim identities
“Actively dying”: A medical phrase and a theoretical framework
An ethnography of actively dying and religious identities
The dying body, becoming, and identities
Bringing together: Cultural anthropology and bioarchaeology
Research
Part I: Discourses
Part II: Institutional practices
Part III: Identity creation and transformation
Anthropology, Islam, and health care
The topic and organization of the book
Notes
Part I: Approaches
1 Death and dying within the US health care system
Ethnomedicine, biomedicine, and how the Enlightenment shapes health care
Following the numbers and making decisions about patients’ care
End-of-life care in the United States
Paying for end-of-life care: Religious debates relating to care in the United States
Notes
2 Islam and end-of-life care: Prevalent approaches and beliefs
Decisions about end-of-life care and preparation for death
The dissemination of knowledge and weighing the benefits against the risks
Caregiving preferences and the changing landscape
The nuances of Islam and end-of-life care
Notes
Part II: Experiences
3 Muslim health care providers: The intersection of medical practice and religion
Dr. Nasr: Responsibility and judgment
Dr. Bashara: The meaning of suffering
Dr. Patel: Empathy and humanity
Care, religion, and identity
Notes
4 The Muslim child: Adult children caring for dying parents
The “good” Muslim child
Dying and defining faith
When aging parents are sick or dying
Health care, dying, and religious identity
Notes
5 Death: The dead Muslim body and connections to identity
The timing of death
Dying without pain, or a comfortable death
Place of death and burial of the body
Locating place of death and burial within the broader context
Death, burial, and Muslim identities in the United States
Notes
Conclusion: The important case of “a bus”—A critique and intervention
Vulnerability
Competencies in health care and the abandonment of culture
Final thoughts: Writing about end-of-life care during the pandemic
Notes
References
Index

Citation preview

Actively Dying

This book explores the experiences of Muslims in the United States as they interact with the health care system during serious illness and end-​of-​life care. It shifts “actively dying” from a medical phrase used to describe patients who are expected to pass away soon or who exhibit signs of impending death, to a theoretical framework to analyze how end-​of-​life care, particularly within a hospital, shapes the ways that patients, families, and providers understand Islam and think of themselves as Muslims. Using the dying body as the main object of analysis, the volume shows that religious identities of Muslim patients, loved ones, and caregivers are not only created when living, but also through the physical process of dying and through death. Based on ethnographic and qualitative research carried out mainly in the Washington, DC, region, this volume will be of interest to scholars in anthropology, sociology, public health, gerontology, and religious studies. Cortney Hughes Rinker is Associate Professor in the Department of Sociology and Anthropology and the Director of Global Affairs at George Mason University. She is the author of Islam, Development, and Urban Women’s Reproductive Practices and co-​editor of Applied Anthropology:  Unexpected Spaces, Topics, and Methods.

Routledge Studies in Health and Medical Anthropology

Depression in Kerala Ayurveda and Mental Health Care in 21st-​Century India Claudia Lang Diagnosis Narratives and the Healing Ritual in Western Medicine James P. Meza Haemophilia in Aotearoa New Zealand Julie Park, Kathryn M. Scott, Deon York, and Michael Carnahan The Anthropology of Epidemics Christos Lynteris, Frédéric Keck and Ann H. Kelly Locating Zika Social Change and Governance in an Age of Mosquito Pandemics Edited by Kevin Bardosh Affective Health and Masculinities in South Africa An Ethnography of (In)vulnerability Hans Reihling Wandering the Wards An Ethnography of Hospital Care and its Consequences for People Living With Dementia Katie Featherstone and Andy Northcott Actively Dying The Creation of Muslim Identities through End-​of-​Life Care in the United States Cortney Hughes Rinker www.routledge.com/​Routledge-​Studies-​in-​Health-​and-​Medical-​Anthropology/​ book-​series/​RSHMA

Actively Dying The Creation of Muslim Identities through End-​of-​Life Care in the United States Cortney Hughes Rinker

First published 2021 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 52 Vanderbilt Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2021 Cortney Hughes Rinker The right of Cortney Hughes Rinker to be identified as author of this work has been asserted by her in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilized in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. British Library Cataloguing-​in-​Publication Data A catalogue record for this book is available from the British Library Library of Congress Cataloging-​in-​Publication Data Names: Hughes Rinker, Cortney, author. Title: Actively dying : the creation of Muslim identities through end-​of-​life care in the United States /​Cortney Hughes Rinker. Description: Abingdon, Oxon; New York : Routledge, 2021. | Series: Routledge studies in health and medical anthropology | Includes bibliographical references and index. Identifiers: LCCN 2020038582 (print) | LCCN 2020038583 (ebook) |  ISBN 9780367459437 (hbk) | ISBN 9781003026167 (ebk) Subjects: LCSH: Muslims–​Medical care–​United States. | Medical care–​Religious aspects–​Islam. | Terminal care–​United States. | Muslims–​Social life and customs. Classification: LCC RA448.5.A73 H84 2021 (print) | LCC RA448.5.A73 (ebook) | DDC 362.17/​5088297–​dc23 LC record available at https://​lccn.loc.gov/​2020038582 LC ebook record available at https://​lccn.loc.gov/​2020038583 ISBN: 978-​0-​367-​45943-​7  (hbk) ISBN: 978-​1-​003-​02616-​7  (ebk) Typeset in Times New Roman by Newgen Publishing UK

To Kim and Peggy

Contents

Note on language  Acknowledgments  Preface  Introduction: Actively dying—A medical phrase and a framework for analyzing end-​of-​life care and Muslim identities 

viii ix xiii

1

PART I: APPROACHES

1    Death and dying within the US health care system 

31

2   Islam and end-​of-​life care: Prevalent approaches and beliefs  53 PART II: EXPERIENCES

3   Muslim health care providers: The intersection of medical practice and religion 

75

4   The Muslim child: Adult children caring for dying parents 

95

5   Death: The dead Muslim body and connections to identity  117 Conclusion: The important case of “a bus”—A critique and intervention  References  Index 

137 154 165

Note on language

The vast majority of my fieldwork took place in English. For Arabic words or phrases used by participants during interviews, that I  heard during my observations, or that were used in online or print sources, I  used the International Journal of Middle East Studies (IJMES) transliteration system for proper spelling. I  take complete and full responsibility for any mistranslation.

Acknowledgments

I could not have written this book without the guidance, help, love, and support from many individuals. I am grateful to more people that I can list here, and I sincerely apologize for anyone whose names I did not include. I must start by stating that I am indebted to all of those individuals who were part of my research and who shared their experiences with me. I do not want to identify them by their real names so I can preserve their anonymity. This book project could not have been made possible without the support of the medical director and the care team at the hospital in the Washington, DC, region where I  conducted ethnographic fieldwork. They welcomed me and made me part of their team. I remember my first day when I sat in on their morning meeting. My hospital badge read “INTERN.” One physician joked, “Cortney, you went from being a professor to an intern in a matter of minutes!” Even in difficult times, patients and their families at the hospital allowed me to ask questions and to observe care, for which I am eternally grateful. I  want to thank executive members of the Islamic Medical Association of North America (IMANA) who connected me with resources and people when I first began my research for this book and the imams in the local area, chaplains, and others who responded to my inquiries about their work and agreed to be interviewed for this project. I am thankful to all of my participants for patiently answering my questions, and my follow-​up ones. I hope that everyone who took part in my research will be satisfied with the results and will be happy with what I have written in this book. The chapters of this book have benefited tremendously from feedback that I  received from faculty colleagues and students at George Mason University. Their comments helped me turn my data and ideas into something more coherent and concise and their conversations encouraged me to think through tough issues while analyzing my data and writing. I  am thankful for the chances to present my work at various points at brown bags and lectures on campus or virtually as well as to my fellow faculty in the Department of Sociology and Anthropology during my third-​year and tenure reviews. I  am very appreciative of the work that my student research assistants at Mason did for this research project and the resulting text:  Serena Abdallah, Oliver Pelland, Emily Harvey, Jesse Roof, Sofia

x Acknowledgments Losada, Hannah Embler, Elyse Bailey, and Aspen Bataille. I  continue to benefit from my friendship with Sheena Nahm McKinlay, who pushes me to be creative and to think more about how I can use anthropology to address societal problems and community needs. I have been fortunate to receive financial support for this project. The College of Humanities and Social Sciences; the Office of Research, Innovation, & Economic Impact; and the Ali Vural Ak Center for Global Islamic Studies at George Mason University funded my fieldwork and the writing of this book. Small portions of this ethnography were presented at conferences, including the annual meetings of the American Anthropological Association—​a special thank you to the Anthropology of Aging and Life Course Interest Group along with the Association for Anthropology, Gerontology, and the Life Course for sponsoring our panel in 2017 and to Philip Kao for being our discussant and to Margaret Souza for inviting me to be part of a panel sponsored by the Dying and Bereavement Interest Group in 2018. I also presented my work at the Virginia Humanities Conference in 2015 and 2017, the annual meeting of the Society for Applied Anthropology in 2015, the North American Network of Aging Studies research conference in 2015, the Conference on Religion and Medicine in 2014, and the Association for Anthropology, Gerontology, and the Life Course virtual conference in 2020. I thank the conference organizers for giving the chance to participate and those attendees who offered their thoughts on my papers, some of which turned into parts of the following chapters. I am extremely grateful to Katherine Ong at Routledge for the enthusiastic response to my proposal and who gave me the opportunity to publish. I also want to thank the production staff at the press for all of their communication and for helping make this book possible. Portions of the introduction, Chapter 1, and Chapter 2 appeared in Southern Anthropologist 37(1); portions of the introduction, conclusion, Chapter 2, and Chapter 4 appeared in The Unbearable Humanities:  Proceedings of the 2017 Virginia Humanities Conference; and portions of the Introduction and Chapter 2 appeared in Treating the Body in Medicine and Religion: Jewish, Christian, and Islamic Perspectives, edited by John Fitzgerald and Ashley Moyse (Routledge, 2019). I am surrounded by an incredible team of friends and family and I  am astonished by the unending encouragement that they provide. I must thank my father, Ron Hughes, for being my biggest fan and for standing by me through it all. My mother, Cindy Bohm, has given the greatest advice as a nurse and has shaped my thinking and scholarly ideas more than she probably realizes. My husband, Justin Rinker, puts his own needs second to mine. He knew just what to say when I had a rough day or when I needed to overcome writer’s block. Our two children have taught me to live in the moment and that sometimes I need to step away from my computer or put down my pen and paper. They have willingly and lovingly come along with me on my academic and professional journey.

Acknowledgments  xi Finally, this book is dedicated to my late father-​in-​law, Kim Rinker, who was an inspirational human being full of love and light. You could not help but smile when you were around him. And it is dedicated to my Aunt Peggy, who even though she was hundreds of miles away from me and we did not see each other that often, never hung up the phone without saying “I love you.”

Preface

In early 2019, I was driving along Interstate 66, one of the main highways into and out of Washington, DC. I was listening to a debate on the local public radio station about House Bill (HB 399)  in Maryland. Kojo Nnamdi, the program host, stated, But first the Maryland General Assembly is considering legislation to address end of life options for the fourth time in as many years. The legislation would allow terminally ill individuals who have been given six months or less to live the option to legally end their lives with a lethal dose of prescribed medication. Supporters of the bill say that individuals should have the right to end their lives with dignity and exercise control over the final stage of their life.1 On March 1, 2019, the House Health and Government Operations Committee and Judiciary Committee in Maryland passed bill 399, the End-​ of-​Life Option Act, sponsored by Delegate Shane Pendergrass along with 48 co-​sponsors. A week later, the House of Delegates passed the bill 74 to 66 and it was sent to the Maryland state Senate as SB 311 cross-​filed with HB 399, sponsored by Senator Will Smith and 18 co-​sponsors. The Senate Judicial Proceedings Committee heard the bill on March 21, 2019 and passed it with amendments, which some argued would make the law extremely difficult for patients to actually use due to the strict protections and safeguards to the committee required. Mara Buchbinder and Thaddeus Pope make a similar argument about the Our Care Our Choice Act (OCOCA) in Hawaii, stating it has “the most restrictive set of safeguards for MAID [medical aid in dying] in the United States, and perhaps the world.”2 Buchbinder and Pope suggest that “when safeguards are more restrictive than necessary, they impede patient participation and imperil principles of justice.” Even with the amendments to the bill that put protections in place, a week later, the Maryland Senate rejected it with a 23 to 23 vote. This was the same week that New Jersey lawmakers approved legislation giving patients the legal right to end their lives with medical assistance. But yet, even on the fourth attempt, Maryland could not pass such legislation.

xiv Preface The premise of Maryland Bill 399 is not unique in the United States. As noted above, Hawaii passed House Bill 2739, OCOCA, with a 39–​12 vote in the House of Representatives on March 6, 2018. Governor David Ige signed it into law in April of the same year and it took effect on January 1, 2019. Maryland’s neighbor, the District of Columbia, passed similar legislation in 2016. As of January 15, 2020, six other states—​California, Colorado, Maine, Oregon, Vermont, and Washington—​have passed medical aid in dying legislation that permits patients to end their own lives through such means as taking prescribed medications.3 Montana’s “death with dignity” statute came via a court decision rather than state legislation. A  2009 Montana Supreme Court ruling, Baxter v.  Montana, made physician-​assisted dying a legal option. The Death with Dignity National Center notes of the Baxter v. Montana ruling, there is so little difference as a matter of public policy between taking a patient off of life support and prescribing lethal medication that the patient can take, the Court determined that existing Montana law permits physician assisted dying under the circumstances of the Baxter case. A Death with Dignity Act (SB 167) and a bill that would prohibit medical aid in dying were both introduced into the state legislature in 2011, but neither were passed. In January 2019, State Representative Carl Glimm introduced Montana House Bill 284, previously introduced in 2017, otherwise known as the “Physician Imprisonment Act,” which makes prescribing medications to end one’s life illegal. The basis of the bill was that consent to medical aid in dying is not a legitimate defense. The bill was barely passed by the Montana State House of Representatives Judiciary Committee with a 10 to 9 vote before it passed the full Montana House of Representatives on February 14, 2019 (53 to 47), thus reversing the 2009 court ruling. However, on April 5, 2019, the State Senate did not pass the bill in a 22 to 27 vote. During my drive on that cold February day, I  was interested in hearing what the supporters had to say about the proposed bill in Maryland, including Representative Pendergrass and the CEO of Compassion & Choices, an organization that advocates for a wider range of choices at the end-​of-​life, as well as the ethical concerns raised by those against it, which included a physician who is a member of the Maryland Against Physician Assisted Suicide coalition and made the argument that physicians are to treat and heal, not take life away. However, what struck me the most was the heartfelt words of one of the callers into the show. On the air, Dr. David Myers stated that he was diagnosed with glioblastoma six months earlier. This is an aggressive form of brain cancer that is fatal. It is what led to the deaths of Senator Ted Kennedy in 2009, Beau Biden in 2015 (lawyer and son of former Vice President and 2020 President-elect Joe Biden), and Senator John McCain in 2018. The life expectancy of those diagnosed with glioblastoma is a little over a year,

Preface  xv depending on the types of treatment patients pursue, if they choose to pursue curative treatments at all.4 The caller, Dr. Myers, a family physician, said, I wanted to start, Kojo, by saying that the AMA [American Medical Association] actually this year took an amazing stand. They rejected their ethics committee’s recommendation to continue their 25 year old report on physician’s support of aid in dying. The AMA now does not have a position. The medical community has moved now to say that we as physicians have the responsibility not to betray our patients at the end of their lives with terminal illnesses in the last six months … So, I’ve spent the last six months learning how to live while dying. And this is the kind of option that I’ve talked with my family about, with my loved ones, with my friends. And I really wish was available to me and people like me in Maryland.5 Dr. Myer’s phrase, “learning how to live while dying” has stuck with me ever since I  listened to the radio show on that afternoon. This phrase has affected me personally, making me think of my own father-​in-​law’s attempt to “live while dying” after being unexpectedly diagnosed with Stage IV esophageal cancer at age 59 a few years earlier. After years of battling gastrointestinal issues, being diagnosed with everything from ulcers to Gastroesophageal Reflux Disease (GERD), he was finally diagnosed with late stage cancer, and surgery to remove the tumors would be futile given they had spread to other parts of his body. He pursued chemotherapy, had a feeding tube surgically placed, and took different cocktails of pain medications in order to continue to do the activities that he had done previously without any problems, such as holding and playing with his grandchildren and trying to help prepare a family meal around the holidays. But now he was in a physically and mentally weakened state. At the same time, this phrase has also impacted me as a scholar, as I have tried to grapple with what this paradox may mean for how we theoretically conceptualize and write about the dying process, the deteriorating body, and, ultimately, death. This ethnography is a result of the research that I have conducted on end-​ of-​life care mainly among diverse Muslim patients, families, and health care providers in the Washington, DC, metropolitan area between 2013 and 2017. As I reflected on the data I collected as part of this project, and also thought more about Dr. Myers’ phrase, “learning how to live while dying,” I realized that dying and death are filled with paradoxes. Dr. Myers talked about the ways that his daily life and routines changed in light of his fatal diagnosis. This led me to conclude that the verbs “to live” and “to die” are not complete opposites, as they are often portrayed by the public and in the academic literature, but rather, they are just located at different degrees on the same scale. Here, I borrow from Georges Canguilhem’s (1991) well-​known conception of “the normal” and “the pathological.” He argues that they are not in a binary or in total opposition, but are rather different forms of each other. I use his formulation as a basis for thinking and writing about the verbs “to live” and “to die.”

xvi Preface The focus of my ethnographic work has shifted from reproductive health and development in Morocco (see Hughes Rinker 2013a, 2013b, 2014) to end-​ of-​life care in the United States. My trajectory as a medical anthropologist goes all the way from looking at the beginning of life to the end of life. I credit this shift in my academic interests to my year (2010–​2011) as a Postdoctoral Fellow at the Arlington Innovation Center for Health Research (AIC-​HR) at Virginia Tech, an interdisciplinary research center focused on health services research that was established around the same time as the Carilion Virginia Tech School of Medicine. There I worked in conjunction with a large health care organization to develop projects aimed at improving the quality of end-​ of-​life care in an area of rural Appalachia, where access to health services was sparse due to its geographic distance from any urban center; there were general practitioners and a critical access hospital nearby but very little specialty care.6 After I completed my fellowship, I designed the ethnographic project upon which this book is based by bringing together my interests in Islam and biomedicine that guided my earlier work in Morocco (Hughes Rinker 2011) with my newfound interests in end-​of-​life care within the United States. Even with this shift in my trajectory as an anthropologist and as a scholar, I am still prompted by a call put forward by medical anthropologists working in the broader Muslim world to reject the notion that a coherent Islamic theology exists and instead to make diverse individual and community religious beliefs and practices my ethnographic starting point. More specifically, I build on a point made by Marcia Inhorn and Carolyn Sargent (2006), Through local-​level, theoretically informed ethnographic representation, medical anthropology has much to contribute to discussions of Muslims’ lives, as well as to greater understandings of Islam itself, a religion that can be said to encourage the use of medicine, biotechnology, and therapeutic negotiation and agency in the face of illness and adversity. (1) Drawing on my prior research and writing on reproductive health in Morocco, I theorize how the introduction of medical technologies, the utilization of biomedical practices and principles, and the ways that the health care system shapes and regulates the end-​of-​life, transform or produce new Islamic beliefs and different interpretations of sacred texts, and more importantly informs and transforms Muslims’ religious identities within the context of the United States. Before I  continue, I  would like to make it clear to my readers that this ethnography is not about how to or how not to provide end-​of-​life care to Muslim patients and families in the United States. I do agree with the basic premise of cultural competency: A “culturally competent” health care system has been defined as one that acknowledges and incorporates—​at all levels—​the importance of culture, assessment of cross-​cultural relations, vigilance toward the dynamics that

Preface  xvii result from cultural differences, expansion of cultural knowledge, and adaptation of services to meet culturally unique needs. (Betancourt et al. 2003, 294) However, I  also agree with Arthur Kleinman and Peter Benson (2006) about the potential dangers of cultural competency in health care. Kleinman and Benson write, Cultural competency becomes a series of “do’s and don’ts” that define how to treat a patient of a given ethnic background. The idea of isolated societies with shared cultural meanings would be rejected by anthropologists, today, since it leads to dangerous stereotyping. (2006, 1673) I attended a professional conference where an established anthropologist disclosed that when working at a hospital, they had been asked to create “checklists” for health care providers on how to interact with and provide services to patients based upon their ethnic and cultural backgrounds. The anthropologist refused to do so arguing that it could hurt the patients more than help them because it could aid in stereotyping and making generalized assumptions about people based upon skin color, place of origin, or family heritage (a point I will return to in the conclusion). In my ethnographic fieldwork, data analysis, and subsequent writing, I took the complex relationship between religion and culture seriously, which as many of my participants pointed out is not always easy to disentangle or understand. This is why this book focuses more on the paradoxes of death and dying in the United States, and their role within the creation and transformation of religious identities among diverse individuals who identify as Muslim, and less so on what Islam teaches about illness and the end-​of-​life, the “do’s and don’ts” of providing health services to Muslim patients who are seriously ill or near death, or the “correct” interpretations of Islam. I was in the midst of data analysis and outlining my future ethnography (this book) when I listened to the radio show on my drive and heard Dr. Myers’ poignant words, “learning how to live while dying,” on the air. At the time, I was grappling with how to write a book in which Islam does not come across as static or monolithic and that my interlocutors who identified as Muslim are not all assumed to hold the same beliefs. Instead, I wanted to write a book that highlights the very diverse backgrounds of my interlocutors, particularly those who identified as Muslim, their wide-​ranging experiences within the US health care system during times of serious illness and end-​of-​life care, and the multitude of interpretations of Islamic principles that I encountered over the course of my research. Dr. Myers’ words inspired me to frame my work in a different way than I had originally planned—​around a paradox. What I took away from his story of being diagnosed with a fatal brain cancer is that death and dying are not the end, as we usually think of them. I acknowledge that

xviii Preface biological life ends, but I also see death and dying as the start of something new. The academic literature (e.g., Kaufman 2005, Scheper-​Hughes 2009) as well as the public media have shown that Americans do not like to talk about death and very often fear death exactly because it is seen as the end, the terminus, and you cannot go back once you reach it. Astrophysicist Adam Frank writes, Death is not everyone’s favorite subject. Many people just don’t want to talk about how we face death, what it means to live in the face of death—​ or, even, about our encounters with the death of others. As a group, Americans, especially, just don’t want to talk about death at all … Death is the final and most complete of mysteries.7 I saw this with my own father-​in-​law’s battle with cancer. After his official diagnosis, I remember my partner stating that his father had to get better, and after he passed away—​rather unexpectedly from a blood clot—​my mother-​in-​ law said that they did not talk about the possibility of his death for fear that it would really happen. When I was a postdoctoral fellow at Virginia Tech and conducting research on end-​of-​life care in rural Appalachia, I heard the same story over and over again from physicians and staff at the hospital—​very sick patients would come to the emergency department without advance directives and family members were unaware of their wishes for care. One physician recalled that an older woman who had a respiratory disease was recently admitted to the hospital and was in and out of consciousness. This was not her first time to the hospital. The physician asked her husband and young-​ adult child if she would want a breathing tube put in place, because without one, she most likely would die sooner rather than later. The physician said that the husband walked over to the woman’s bed, physically shook her to the point that she stirred, and asked if she wanted a breathing tube; she nodded yes. They placed the tube and removed it a few days later once her condition improved. The physician told me that most likely she would be back again, and they would repeat this process. After listening to Dr.  Myers’ experience and outlook on life, and subsequently starting to view death not as an end, but as a beginning, I returned to my fieldnotes, transcripts, and other documents I had collected during my work. His words really helped me frame my research in a way that emphasizes the significant role that the dying process and ultimately death play in the creation and transformation of Muslims’ religious identities within the context of the United States. When I went back to my data during analysis, I realized that this paradox was underlying much of them all along, but I had just not recognized it or fully understood it until after I heard Dr. Myers’ words, which gave me a way of showing that religious beliefs and understandings, while no doubt are important to many people, are only one part of the decision-​ making puzzle when it comes to serious or terminal illness and end-​of-​life care. More importantly for my work, they certainly do not exist in isolation

Preface  xix and separate from life circumstances, but rather, are tightly bound to social, cultural, economic, and political forces at individual, community, national, and even international levels. After I  had completed data collection and analysis and formulated the basic premise for this book, I brought my ideas to the director of the hospital care team that I worked closely with over the course of my fieldwork. (I discuss more about my research methods and fieldwork in the introduction.) She said that she appreciated me viewing death as “an opening” rather than an ending or closure, because in her daily practice with terminally ill patients, Muslim and non-​Muslim, while death is the end for the actual patients—​the biological end of their lives—​it is often much more complicated. The days, hours, and minutes leading up to death are usually filled questions and reflection for patients and their families and friends, and this does not stop once the death occurs, as family members and loved ones are often left still grappling emotionally and mentally with the death for a period of time. Death can have a ripple effect that is profound and long-​lasting on those around the patient, including the physicians, nurses, and hospital staff that cared for the dying patient. When I  first started my ethnographic fieldwork at a hospital in the Washington, DC, region, I sat in on a care team meeting, which I did a few times a week over the course of my research (more in the introduction). I was naïve and assumed that the health care providers and staff in the room would not feel so much for the patients or think much of caring for someone who is dying because they deal with death on a daily basis, but I was mistaken. The medical director of the care team did state that deaths do not especially bother her; she does not mind when patients pass away. The reason she got into medicine was so that she could make deaths better for people. However, she had a recent case that was very bothersome for her. It was of a 93-​year-​old woman (non-​Muslim) who was happy being admitted to the hospital over and over again, having a breathing tube placed for a time, and undergoing various procedures. The physician described her as “sharp,” as she could name all of her pets at home. For the older woman, this was life, and she was happy with it, but the physician could not understand it. She was upset with herself for judging the case. She is the one who is to make sure that the patient’s wishes—​no matter what they are—​are honored, but she just could not come to understand this case. She was angry with herself. The chaplain on the care team said it was because the case was going against her own values and what she wants for herself when she dies; it was not particularly judgement, but rather, just not what she would want to have happen to her. I end the preface with this example because this book focuses mainly on the religious identities of those surrounding the ill and dying patient—​those somehow connected to the declining body and eventually the dead body. What I hope to show in the following chapters is that while identity formation is a life-​long process, the physical changes that happen in the body during serious illness and dying and also after biological death occurs—​all the changes unfolding within the

newgenprepdf

xx Preface context of the US health care system and the social and economic contexts of the United States more generally—​can also greatly inform religious identities of those who have loved, cared for, or medically treated the dying person.

Notes 1 The Kojo Nnamdi Show. 2019. “Death with Dignity? The Debate Over Medically-​ Assisted Suicide in Maryland,” WAMU 88.5, February 25. Accessed January 15, 2020, https://​thekojonnamdishow.org/​shows/​2019-​02-​25/​md-​end-​of-​life-​options-​act 2 Buchbinder, Mara, and Thaddeus M.  Pope. 2018. “Medical Aid in Dying in Hawaii: Appropriate Safeguards or Unmanageable Obstacles?” Health Affairs, August 13. Accessed July 25, 2020, www.healthaffairs.org/​do/​10.1377/​hblog20180808.14380/​ full/​. 3 For more on state legislation visit the website of the Death with Dignity National Center. Many of the statistics and facts on state laws provided in this preface can be found on their site. (www.deathwithdignity.org/​take-​action/​) 4 Penn Medicine. 2019. “The Life of a Brain Tumor: How Does Glioblastoma Grow?” Neuroscience Blog, November 14. Accessed January 15, 2020. www.pennmedicine.org/​ updates/​blogs/​neuroscience-​blog/​2018/​november/​the-​life-​of-​a-​brain-​tumor-​how-​ does-​glioblastoma-​grow. 5 The Kojo Nnamdi Show. 2019. “Death with Dignity? The Debate Over Medically-​ Assisted Suicide in Maryland.” 6 A critical access hospital (CAH) in the United States is a Medicare participating hospital that meets specific requirements (located in a rural area, no more than 25 inpatient beds, and shorter acute care stays, for example). See Centers for Medicare and Medicaid Services (CMS) for more information on CAHs. Medicare Learning Network. 2019. Critical Access Hospital, Accessed January 16, 2020, www.cms. gov/​Outreach-​and-​Education/​Medicare-​Learning-​Network-​MLN/​MLNProducts/​ Downloads/​CritAccessHospfctsht.pdf. 7 Adam Frank. 2016. “Why Not Talk about Death?” NPR: WAMU 88.5, Accessed January 17, 2020, www.npr.org/​sections/​13.7/​2018/​03/​26/​596442228/​why-​not-​talk-​ about-​death.

Introduction Actively dying—A medical phrase and a framework for analyzing end-​of-​life care and Muslim identities

One afternoon, I was having a conversation with a woman who had lost both of her parents. She was raised in the United States and recalled attending Islamic school when she was younger. We were discussing my research when she said that death was talked about in her school. She was taught that, as a Muslim, she should not fear death, but, rather, should be prepared for it and accept that it is a natural part of life. I found her story fascinating, but what was most striking to me was when she told me that dying is a time when you are to be quiet and peaceful. It is a time for inner-​reflection and a re-​ evaluation of your life. This is not only true for the person who is facing death or suffering from a serious illness but for all family members and friends who are part of the process and offering their support. How this woman talked about her experiences and what she was taught in Islamic school made me think of all the ways that death and dying are not straightforward, but are complex biological and social processes that are filled with new beginnings for and transformation of self-​identities. For her, death was a time to reflect and evaluate and holds significant meaning religiously, socially, and culturally. Death was much more than just the biological end of life. This woman’s words about death relate to one phrase that I heard again and again during my fieldwork on end-​of-​life care among Muslim patients, families, and health care providers at a hospital in the Washington, DC, region: “actively dying.” For example, in my observations of the conversation about a Muslim patient who was deemed to be “actively dying,” the physician noted that the family had accepted that he would die soon, most likely while he was in the hospital. When she walked into the room to care for the patient, she noticed that he had a Qur’an laying on his bed. Many family members had gathered inside the cramped hospital room. The physician asked if they would like an imam to come, as the hospital had several volunteer Muslim chaplains,1 but they said they were “doing the prayers themselves.” They had come to terms with the fact that the patient was dying and did not have a strong desire to take him home. They, instead, wanted to be with him in the hospital until he passed away. After hearing these types of discussions during my fieldwork at the hospital, and after hearing experiences like the woman’s I recalled at the start of this introduction, I became curious as to how dying

2 Introduction can be active in nature, given that the dying body is frequently described as passive, as deteriorating, or failing—​what we might say are the exact opposite of “active.” One of the first times I  heard this phrase was when I  was attending the meeting of the care team that I partnered with for my ethnographic research at a hospital located about 30 minutes outside of DC. The care team was discussing a patient who was nearly 80  years old and had worked in Washington under President Ford. He was described as being extremely religious and even had Pope dolls in his room. A priest had recently given him his last rights because he was “actively dying.” As the team discussed the patient’s case, the chaplain on the team explained that she does not read Psalm 23 until the person is “actively dying.” She finds it should not be read too early because it is associated with impending death. This could raise anxiety for patients, if they are awake and aware of their surroundings, and their families and friends. There is also this idea that reading the psalm could actually make death come sooner and takes away any hope of recovery or living a “quality” life again. It is not until patients are said to be “actively dying,” and there has been an acceptance of this by the patients (if they are awake) and their loved ones, that she will read Psalm 23, which begins: The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul. He guides me along the right paths for his name’s sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me.2 Psalm 23 was written by King David, who expanded Israel. King David viewed God as a shepherd who could fulfill all of one’s needs. The psalm also urges the reader to keep focused on God and to “dwell in the house of the Lord forever.” It is one of the most well-​known psalms and is commonly read at funerals for Catholics and those of other Christian faiths, hence the chaplain’s caution for not reading it too early for patients at the hospital. The chaplain’s hesitancy to read Psalm 23 until the patient is “actively dying” parallels the argument by Nancy Scheper-​Hughes (2009) that Americans are insecure and uncertain about death. Death in earlier centuries—​what may be called “premodern” death—​was an “ordinary and expected part of everyday life.” However, there was a shift to “ ‘invisible death, death ‘banished’ from polite society and denied” (Scheper-​Hughes 2009, 320) beginning in the nineteenth century. Scheper-​Hughes writes, “As death was professionalized and removed from the home, new anxieties arose. Americans began to worry about end-​of-​life decisions made by medical staff in emergency rooms, intensive care units, and even hospices. How dead is dead?” (2009, 320). The transition in the ways that American society views death and how it is experienced stems from the development of medical interventions and technologies that thwart

Introduction  3 death, in combination with where death is taking place—​no longer in the home, but more so within medical institutions. Scheper-​Hughes observes that Americans overall fear “where and how they will live out their final days” (2009, 319). They are anxious about what the end will feel like, especially since “death in America has been transformed into a treatable condition, one that can be endlessly postponed” (Scheper-​Hughes 2009, 318), which may potentially prolong pain and physical suffering. In addition to the phrase “actively dying,” literature has shown that there are interesting and paradoxical terms to also describe “aging” in the United States, and even beyond its borders. “Active aging” has become a popular phrase in public health discourses as a way for adults as they become older to counter social isolation and physical demise. Sarah Lamb (2019) writes, Although many regard aging or its absence as also involving luck, genes, and structural forces, widespread perceptions underscore that we each have the opportunity, and even perhaps a moral and political obligation, to make our own aging as healthy, active, and successful as possible. (4) Frequently aging is associated with a deterioration of the human body, including the mind, with jokes about cracking knees, not being able to get up from a sitting position easily, forgetting things regularly, or becoming more fatigued or sedentary as one grows older. Lamb points out that even though there are declines that may come with older age that are just part of life, we are not to become “old,” meaning that we are not to experience the decline in health or physical and mental fitness that comes with growing old. To keep oldness at bay, for our own good and for the good of our nation, we are expected to participate in physical and social activities, keep our minds “sharp” through knowledge acquisition, and perhaps even seek out medical interventions or alternative or natural healing techniques to renew our bodies. The ideas of keeping active in old age and rejuvenating older, ailing bodies are central themes in a special issue of the journal Anthropology & Aging (2019), titled, “Energy and Aging in the Danish Welfare State.” Through an exploration of multiple ethnographic cases in Denmark, such as community programs and national organizations, the authors together show how the concept of energy is fundamental to neoliberal polies and programs concerning older adults. The guest editors of the issue, Henrik Hvenegaard Mikkelsen, Nete Schwennesen, and Aske Juul Lassen (2019), write in the introduction, “the overall idea of empowering qualifiers of the aging process (successful, healthy, positive, creative, productive), and policies addresses them, is global, but with many different local adaptations” (1). Underlying these policies and programs is the assumption that the aging body is not active nor is it productive, and, therefore, new life must be pumped into the aging body through different activities and state-​sponsored programs. The guest

4 Introduction editors observe this assumption is not unique to Denmark. The state believes that the older body will naturally deteriorate and decline both physically and mentally, but aging is not to happen in this way, as it could place a greater burden on society and its resources. Moreover, “old age” is not to be listed as the official cause of death on a death certificate in the United States, according to the Centers for Disease Control and Prevention (CDC).3

“Actively dying”: A medical phrase and a theoretical framework How is dying “active” when the word implies that the body is shutting down? How is death “active” when it means that biological life will end? This book is centered on this paradoxical phrase and the ways that it allows us to interrogate religious identity within the context of the United States. We will die at some point and our bodies dictate this, but yet, we have modern technologies and other means to try to prevent it. Death is now seen as a “failure” in modern medicine because it can and should be treated, but yet, we do not want to prolong the process only to create more harm than good.4 All of this anxiety in American society about death points to the fact that it is considered to be the most final end. Medical anthropologist Margaret Lock (2001) states, “Biological death is recognized in society and in law by the standards of medical science … a dominant approach in the ‘modern’ world argues that nature, including the human body in life and death, functions according to scientific laws” (32–​33, original italics). This means that there is an “end of recognizable life” (Lock 2001, 38), although legally this end may be defined differently among countries and across cultural contexts—​as Lock shows in her work on brain death in Japan and North America. What I  want to challenge in this ethnography is the very fact that death is viewed as an end. Even though I agree that there is a biological end to life that modern science and medicine usually determines, I suggest that death is not just an end, but a point in larger cultural, social, and psychological processes. It is a point that raises further questions and opens up a space for inner-​reflection and self-​identification; this is why I find the use of the phrase “actively dying” to a be a productive framework for my exploration of end-​of-​life care within the US health care system among Muslim patients, families, and health care providers in the DC metropolitan region. The Merriam-​Webster dictionary defines “active” (an adjective) in multiple ways, such as: “characterized by action rather than by contemplation or speculation,” “producing or involving action or movement,” “quick in physical movement,” “marked by vigorous activity,” “requiring vigorous action or exertion,” and “having practical operation or results.” What I find intriguing is thinking about how this word was used by health care providers alongside the word “dying.” The term “dying” marks a decline in health, a deterioration of the human body, and the nearing of death. The Merriam-​Webster dictionary again offers multiple definitions for the word, including:  “gradually ceasing to be” and “having reached an advanced or ultimate stage of

Introduction  5 decay or disuse.” In my ethnographic research, I found that “actively dying” was most often used by the care team to describe patients who they thought were beyond recovery, mostly due to an advanced state of disease but sometimes due to extensive physical and traumatic injuries. I asked myself on several occasions: What does it mean when these two words are used together to describe someone? How is dying active when this phrase is used to define a patient who was thought to be beyond rescue and very close to death? How has the patient’s poor bodily condition and ill health come to serve as their definition as a person? What makes this more complicated is that in the United States, “actively dying” does not have a clear definition within medicine or the literature. An article that appeared in the Journal of Pain and Symptom Management states that “actively dying” is “commonly used but rarely and inconsistently defined” (Hui et  al. 2014, 77). The authors, Hui et  al. (2014), conducted a systematic review of the medical literature between 1948 and 2012 and found that “actively dying’ ” was ranked highly by “palliative care specialists … in regard to both the frequency of use and the relative importance” (78). They found, “actively dying has not been well defined. One definition described it in terms of the last hours or days of life, and the other discussed the presence of unique signs and symptoms preceding death” (Hui et al. 2014, 81). Moreover, Hui et al. observe, The terms “end of life,” “terminally ill,” and “actively dying” have prognostic implications and are frequently used in clinical communications and published articles; however, the exact meaning of these terms is unclear. This ambiguity results in confusion that may lead to delays and inconsistencies in arranging “terminal care” and facilitating “transition of care.” (2014, 78) Similarly, there was not a consensus among the physicians I worked with at the hospital as to what “actively dying” meant exactly. Even the medical director of the care team could not give me a specific definition when I asked her to clarify what it means when a patient is noted to be “actively dying.” She responded, “I wish I could. I have my definition, but that doesn’t mean it is the same as another physician’s definition.” In his article on music therapy for terminally ill patients, Robert Krout (2003) writes, “terms such as ‘imminent death,’ ‘approaching death,’ ‘impending death,’ and ‘actively dying’ are used to describe patients whose vital signs are rapidly declining towards expiration” (129). Krout (2003) recalls when Ms. T’s nurse described her as “actively dying,” and the patient’s breathing sounded congested. A  number of family members were present in the room, including the patient’s husband, children, and adult grandchildren.

6 Introduction One of the patient’s daughters served as spokesperson for the group, saying, “Ma’s close now.” (132) At the medical conferences and trainings that I  attended as part of my research, presenters and participants commonly spoke of the “death rattle” as a sign that death was drawing near for a patient. This is a sound that comes from the back of the throat when the dying person is no longer able to swallow or cough, which means that saliva and secretions pool there. Given there is not a standardized definition of “actively dying” that is used consistently across medical settings or institutions in the United States or even within the same facility, communication challenges may arise among health care providers, caregivers, patients, and family members. However, there is a recognition in the medical community that “actively dying” is the beginning of the ultimate end—​death. Research in public health and social work in particular has also demonstrated that patients and their loved ones hold the belief that “actively dying” means that their lives will end soon. Being considered to be “actively dying” has made them realize that the end-​of-​life is starting. In a study of older men in Seattle, Washington, who suffered from terminal heart disease or cancer, researchers found that the men believed their death was near. Those in hospice stated they appreciated “the frank information provided about whether they were actively dying” (Vig and Pearlman 2003, 1599). The participants in the study pursued hobbies and other activities in an attempt to stave off death and the final stages of life, similar to Lamb’s (2019) finding that we are to use medical interventions and to engage in physical activity so not to become “old” (read: non-​productive, sedentary, sickly). They wanted to do the things that were enjoyable to them before they became physically unable to do so because of the progression of their disease. In my work, I found that “actively dying” also raised anxieties among patients and families, which were not so much about death itself, but more so about the symptoms, pain, and suffering that could potentially lead up to it.5 When providers said that patients were “actively dying” or when they recommended that patients be transferred to hospice either in their own homes or in a facility, there was a belief among patients and families that health care would end. They thought they would no longer receive quality services in the hospital. They felt that the staff would forget about them and move on to other patients who could be saved. Some patients feared that they would experience tremendous pain and suffering during their final days and moments. This, of course, was not true. Health care providers never just stopped caring for a patient because they were “actively dying,” but, rather, the types of services they provided just changed, shifting from a focus on curative treatments to comfort care. Anita Hannig (2017) reiterates the fear and anxiousness surrounding death that exists in the United States:

Introduction  7 In the United States, death and dying aren’t popular topics of conversation. The title of a recent graphic memoir by New Yorker cartoonist Roz Chast says it all: Can’t We Talk About Something More Pleasant? Instead of confronting their own mortality, many Americans tend to label such talk as “morbid” and try to stave it off—​along with death itself—​as long as they can. It wasn’t always this way in the U.S. Until the end of the 19th century, Americans were far more familiar with many aspects of death, largely because most people died at home and people took care of their own dead. In order to break through the silence and avoidance that shape contemporary American attitudes toward death, we must teach young people different ways to engage with the end of life. Rather than shield them from the specter of mortality, we need to give them the space and tools to explore their own relationship to it.6 This unease about death and the time leading up to it was also brought up at a palliative care conference that I attended in southern Virginia. At the conference, which was attended by health care providers and members of the community, a physician, who helps direct a non-​profit organization aimed at providing palliative care to dying patients in the region, reiterated that “doctors like to fix things.” In her presentation, she claimed that she has found many clinicians and patients to be “anti-​hospice” because it is seen as “giving up.” Similarly, the care team I worked with at the hospital—​who I can say with confidence are not against hospice—​stated that some patients have a very negative understanding of hospice and they see it as a way to help them die, meaning to make death come quicker and in a more painful way, rather than as a means to provide comfort and support during the final stages of life. Sometimes, patients or family members would want palliative care but not hospice because they thought that meant terminating care. This was the case for one patient discussed in the care team meeting who was hospice appropriate, but the family did not want it. They instead wanted only palliative care at the hospital for their loved one. The physician at the conference observed, as Scheper-​Hughes (2009) does, that the typical medical role in the United States is centered on caring for patients and fixing what is wrong with them through the use of medical interventions, prescription medications, and technologies. However, with terminal illness, she explained that their mindsets need to change. It is not always about repairing or treating, but instead, it may just be about “tweaking” to make sure that the patient is comfortable and that pain and symptoms are controlled during the final stages of life. When medical providers, caregivers, or patients use the phrase “actively dying,” they highlight the processual nature of death. (I want to note here that in my research and in much of the literature death is not instantaneous, such as from a car accident where people may die on impact.) Death is a process that unfolds over time and across spaces. In addition to envisioning death as a process rather than a one-​time event, I also conceptualize death as not just an “end,” even though biological life ends

8 Introduction at death—​as highlighted through the precision of officially documenting the time and cause of death on a death certificate and having a physician sign it—​but as central to studying the formation and transformation of religious identities given that death strikes at many religious, moral, ethical, and spiritual questions and beliefs.

An ethnography of actively dying and religious identities I begin my ethnography with a discussion of “actively dying” and the paradoxes associated with death to highlight that death is not merely just the time when biological human life ends. This is certainly a primary part of death, but throughout the chapters, I  also show that death is intimately connected to larger social processes. This ethnography uses death as a lens through which I  examine the creation, transformation, or contestation of Muslim identities within the context of the United States, and particularly the areas surrounding Washington, DC. It is based on my three main research questions: (1) What are some of the more prominent Islamic discourses about illness and death and how do they intersect with medical discourses? (2) How do Muslim patients, families, and providers see the US health care system’s approach to the treatment of illness and death in light of their own religious understandings of the end-​of-​life? And, (3)  What do Muslims’ everyday interactions with health care during serious illness and end-​of-​life care tell us about what it means to be Muslim in the United States given the social and political climate? I began this introduction with the concept of “actively dying” as a way to set the stage for the later ethnographic chapters, which in my attempt to address my three main research questions, delve deeper into the ways that death plays an “active” role in the formation and transformation of diverse Muslim identities. I suggest that death and dying, while often thought of in terms of the deterioration of the body, the failure of organs, and poor health, are actually very productive in reality, but not specifically in a physical sense. Just like older individuals are to remain prolific members of society and in good physical and mental condition, I pose that death is characteristically constructive in nature. I show this by putting death and dying at the center of studying religious identities. I use Muslims’ interactions with the US health care system during end-​ of-​life care and during serious illness as a starting point to analyze how death is shaped by institutional policies, national politics, class, and social forces. This framing also highlights how religious identities and beliefs are contingent upon these factors as well. The final point, I  contend, sets my work apart from other research on religion and dying. For example, anthropologists have masterfully shown that religion can serve as a coping mechanism in times of stress and emotional turmoil and be a source of hope (Malinowski 1922). Research in fields such as public health, social work, and psychology has demonstrated that enhanced well-​being as well as positive health and psychosocial outcomes are associated with different aspects of

Introduction  9 religious participation or spirituality. As adults become older, religion and spirituality can sometimes become more meaningful parts of daily life and conversations, and they may also provide ways to talk about death or what happens next (Nelson-​Becker 2017). However, most of this work on religion and dying has examined how people draw on their faith as their death nears or as a family member or loved one is dying as a way to face the unknown or their fears. I do not disagree with this trajectory, but at the same time, I also frame this ethnography around this process happening in reverse. I start from death and dying, and particularly from the physiological changes that occur within the dying body or when patients are said to be “actively dying” to explore Muslims’ religious identities in the United States.7 I complicate the concept of “actively dying” by transcending it from a phrase used in medical settings and the literature, to a theoretical framework for analyzing religiosity and religious identity. Throughout this ethnography, I will analyze how the deteriorating body, the process of dying, and death itself informed the ways that most of my participants viewed themselves as Muslim. I conceptualize the dying body as a site through which religiosity and Muslim identities are created or changed within the American social, economic, and political context. In part, this framing comes from the numerous mentions of “actively dying” patients during the care team meetings I attended at the hospital over the course of my fieldwork, but also, it comes from my own experiences as an ethnographer in the hospital room, where families and clinicians gathered around a dying patient to discuss treatment options. Most of the time, patients did not move. They were frequently connected to multiple monitors and machines, resting quietly in the bed. While in this state—​still, motionless, somewhat conscious or unaware of their surroundings, or sleeping—​they would be described as being anything but active, in the traditional sense of word. Sometimes, patients may even be treated as if they are invisible by families and clinicians. A good example of this can be found in the Netflix documentary Extremis,8 which follows the physician Dr.  Jessica Zitter and her colleagues as they care for dying patients in a public hospital in Oakland, California. In one scene, the patient is hooked up to a breathing machine and several monitors. She lies motionless in the bed, albeit for blinking her eyes or raising her hand from time to time to try to communicate. Her husband sits next to the bed speaking with one of her physicians about options. You hear the physician constantly refer to the patient as “she” and does not direct any statements about her condition to her directly, but rather, only to her husband, even though the patient is conscious and doing her best to listen to the conversation. I would suggest, however, that this woman’s dying body, as well as the dying bodies I observed in the hospital, became much more than just bodies that are physically declining. I find the use of “actively dying” as an overarching framework and as a theoretical concept to explore faith and religious identity to be helpful in avoiding describing my participants in terms of being “exceptional.”

10 Introduction I  borrow this term from Peter Mandaville (2017), a former Senior Advisor in the Secretary of State’s Office of Religion and Global Affairs at the State Department.9 I remember in 2015 when I first met the members of the care team I  was going to be working with for my ethnographic research. One of the members mentioned to me that they were glad I was there because I could shed light on how to better care for Muslim patients. The medical director told me in one of our first meetings that the Muslim physician on the team, Dr. Idrisi, usually tends to most of the Muslim patients that the team sees, but she emphasized that this should not always be the case. The intention is to provide care that is sensitive to patients’ unique cultural and religious needs and beliefs, but at the same time, by automatically assigning a Muslim physician to a particular Muslim patient—​without recognition of the potential differences between them due to a multitude of factors—​the patients are being framed as “exceptional” and in need of specific services or care. Throughout this book, I will provide examples of times when Muslim patients at the hospital preferred to see and did not prefer to see a Muslim physician. However, I  also want to note that there may not have been a discussion with patients first about their needs, wants, or concerns before having Dr.  Idrisi or another Muslim physician see them. The lack of this type of conversation may put them in a more vulnerable position and erase some of the social or economic problems that exacerbate their illnesses, a point I will linger on in the conclusion. The category of “exceptional” suggests that patients require additional or different types of care at the end-​of-​life based upon assumptions about their religion or culture. I do acknowledge that faith plays a role in health decisions and behaviors, especially during serious illness or the end-​of-​ life, as the anthropological literature as demonstrated. Marcia Inhorn and Gamal Serour (2011) found that after September 11, 2001 in particular, Muslims have faced “challenges in seeking and receiving medical care [in the U.S.], including care that is judged to be religiously appropriate” (935). Similarly, Lance Laird and colleagues (2007) note, “Media reports, political rhetoric and legislative action … increasingly focus on Muslims as an out-​group, promoting negative stereotypes of Muslims and Islam. Yet few sources ask how such attention affects the health of Muslims” (922). I  also want to caution that over-​emphasizing the role that Islam plays in my participants’ choices about care and their approaches to death is not particularly productive, and at times, may actually miss their real health needs and problems. I hope to highlight in this ethnography that using the paradox of “actively dying” helps us to examine how death is a meaningful social and religious process and is a starting point, not the end point, to negotiations of religious beliefs and identities. More specifically, I  argue that the physical and biological changes that occur within the dying body and at the time of death, and immediately after, are at the center of how patients, their families, and health care providers define their own Muslim identities.

Introduction  11

The dying body, becoming, and identities Research has showed the ways that religion can inform decisions and practices at the end-​of-​life. Timothy Daaleman and Larry VandeCreek (2000) write of end-​of-​life care in the United States, The goal of a quality comfortable death is achieved by meeting a patient’s physical needs and by attending to the social, psychological, and the now recognized spiritual and religious dimensions of care. This perspective is highlighted in a recent consensus statement that includes the assessment and support of spiritual and religious well-​being and management of spiritual and religious problems as core principles of professional practice and care at the end of life. (2514) I start from the dying Muslim body to analyze how religiosity and religious identities are created, transformed, or contested and use interactions within the US health care system as a lens to understand how this process takes place. To expand on the scholarship on patients’ experiences with terminal illness and end-​of-​life care (Solimeo 2009; Taylor 2008), I  draw on Suad Joseph’s (1993) “connectivity” to argue that religious identities of family members and health care providers can be comprehended in light of their relationship with the dying patient’s body. The dying Muslim body then becomes something else than what it really is—​a body whose organs are failing or whose brain has little to no activity. This reinforces my earlier point in this introduction that death is not just the biological end of human life and dying is not just when bodies stop working as they should, but it is also an “active” process through which identities are formed. Identities are said to be created over the course of a lifetime and are informed by the contexts and networks in which we live (Butler 2006; Grosz 1994). Religious identities can be formed through interacting with a faith community or reading and interpreting sacred texts (Deeb 2006; Parvez 2017). Anthropologists have demonstrated how identities are fluid and malleable and become even more complicated in light of globalization (Hall 1994; van Meijl 2008). Martin Sökefeld (1999) observes, The concept of “identity” has undergone a paradigmatic shift in recent decades. Originally, its meaning was “sameness” … In contemporary texts on identity, the concept seems not to exist in the singular. Whereas it was once defined by sameness and unity, both qualities have given way to difference and plurality. (417) I make the creation, transformation, and contestation of Muslim identities central to this ethnography on end-​of-​life care in order to show how

12 Introduction religious identities are intricately connected to one’s other identities, status in society, and life circumstances. In my analysis of Muslim identities given the contemporary political and social environment of the United States, I draw inspiration from Stuart Hall (1994) who reminds us that “we should think, instead, of identity as a ‘production’ ” (222). Hall’s argument suggests that identities change depending upon context and position within society. I agree with Hall, but I go on to suggest that death and dying, which may be the “end of recognizable human life” (Lock 2001, 38), is not the end to the production of identity for the deceased, and especially for their loved ones and the health care providers involved in their case. The Muslim patients I observed in the hospital were immobile and unable to speak, but their dying bodies helped inform the religious identities for some of the health care providers—​ and I focus on those who identified as Muslim as well—​and for some of their family members. Instead of starting from the premise that identities and religious beliefs are only formed when living, I  interrogate how they are also created or at least transformed through death and through connections to the dying body. Death is not a single event, as shown by anthropologists and social scientists, but it is a process that unfolds over time and across spaces (Kaufman 2005; Norwood 2009). Care is not one-​dimensional either; there are multiple layers and interactions among people (Browner and Press 1996; Crowley-​Matoka and True 2016). One imam said during our interview, “Muslims … say … go to the doctor. We prefer to go to a Muslim doctor who practices because there are a lot of non-​practicing Muslim doctors.” This religious subjectivity, I  argue, has developed within the context of being a “minority” population in the United States—​as noted by some of my participants—​who has faced public and political backlash in the decades after September 11, 2001.10 One example of this scrutiny and resulting anxiety comes from an interview I conducted with a physician who I will call Dr. Abbasi.11 Dr. Abbasi identifies as Muslim and works in an inner city setting in the Midwest. For a number of years, she has been involved with a national organization in the United States for Muslim health care providers, most notably serving as part of the organization’s ethics committee as well as in other leadership roles. Dr. Abbasi and I connected over the phone one afternoon. I first asked her to talk about her background and medical training, and about how she came to work at her current institution. She stated, The neighborhood was in an inner-​city area where there was no health care. I started at the hospital first as a full-​time physician in pediatrics. And then we started a pediatrics and adolescent clinic. The kids flocked there and the families flocked there and then it so happens that since there was a Muslim doctor, I  started getting attention from all the Muslim [medical] students and Muslims who came into the community. They had certain standards and so they wanted to see Dr. [Abbasi].

Introduction  13 She continued about her experiences at the clinic and hospital shortly after the events of September 11, 2001, They [meaning Muslim families] trusted a Muslim physician and they wanted to see me, even though it is located in an area where the women wear hijabs, abayas, and long dresses. And with scarves, they are afraid to walk in because they were so sensitive at that time, and those kind of outfits were kind of looked upon as very strange. But now, I don’t think they are still seen as strange because of the increase of the number of Muslim patients. But in those days, it was unreal. My nurse once asked me, “Dr. [Abbasi], how come this patient is wearing a long black covering in 85–​90-​degree weather. She is covered head to toe.” I  had to explain to her that this is the way that Muslims dress in their country. It is a sign of modesty. And so around that time I realized that people had very little knowledge about Islam. I recognized that [medical providers and the public] needed to be educated. Dr. Abbasi noted that shared faith may put patients and families at ease, particularly during end-​of-​life care, but at the same time, this comfort also develops out of an unfavorable political and social environment. Policy analysts have suggested that the election of President Donald Trump in 2016 is representative of an initial reaction to changes in the population in the United States. I would also include Muslim populations as a particular target given the recent discourse of “Making America Safe” (as President Trump posted to Twitter in September 2017) and legislation, most notably Executive Order 13769  “Protecting the Nation from Foreign Terrorist Entry into the United States” (in effect from January to March 2017) that denied “entry of certain aliens from seven countries: Iran, Iraq, Libya, Somalia, Sudan, Syria, and Yemen.” In some public and political circles, it was referred to as the “Muslim ban” given that these all are Muslim-​majority countries, but the White House contended they had been selected because they “had already been identified as presenting heightened concerns about terrorism and travel to the United States.”12 Islam has been described “as a way of life” (Barlas 2002, 43)  by some scholars, and while I  do not disagree entirely with this statement as religious principles can guide how one lives their life, I want to use this ethnography of end-​of-​life care to caution against a rhetoric of being “exceptional,” which I would argue can be counter-​productive and actually re-​create the very toxic environment and negative stereotypes of Muslims in the United States that are being critiqued. I give a central role to Muslim health care providers, like Dr. Abbasi, as well as dying patients’ families in my research in order to expand on how death is simultaneously a biological and social project (Kaufman 2015). In this book, I engage with the literature on “becoming” in anthropology to show how the dying body is a central part of the formation of Muslim identities. The dying bodies of Muslim patients are “already convergences of specific sets

14 Introduction of social relations (or vibrations) and patterns of their contextual or environmental social setting” (Faber 2011, 14 original italics). My focus on the dying Muslim body builds on João Biehl and Peter Locke’s (2017) argument that “things”—​in this case the dying body and dead body—​should not be viewed as just symptoms of something bigger, but they are sites of inquiries themselves. Biehl and Locke write, “Here, objects are milieus in themselves; worlds are at once material, social and symbolic, simultaneously precarious and in motion; and individuals and collectives are constituted as much by affects and intensities as by structural forces” (2017, xii). By starting my analysis of religious identities and end-​of-​life care from death and the dying body, I interrogate what it means when we pair “active” with “dying” to describe patients. As I already stated, I draw on scholarship in the anthropology of aging (e.g., Lamb 2019, Moore 2017) to explore what I see as a paradox of death, which actually opens up a space to investigate religious identities.

Bringing together: Cultural anthropology and bioarchaeology This ethnography brings together some of the classic interests of medical anthropology, such as illness and disease, death, healing and care, and the human body (Evans Pritchard 1976; Kleinman 1988), with approaches from mortuary archaeology, or bioarchaeology (Larsen 2002; Parker Pearson 1999) to analyze religious identities. George Armelagos (2003) writes, “Bioarchaeology developed by the merging of perspectives from skeletal biology and archaeology as the disciplines pushed themselves out of a state of mutual intellectual crisis” (27) and notes that “the birth of bioarchaeology can be seen as the blending of methods and data from skeletal biology and archaeology” (29). Bioarchaeologists only have the body—​and this means human skeletal remains—​to work with in their research and their recreation of the past. Sabrina Agarwal and Bonnie Glencross (2011) eloquently state the importance of studying skeletal remains: While often regarded as the dry and inanimate remainder of the corpse, during life the skeleton forms the building blocks of our personal and social experience with the world. As such, for the archaeologist, human skeletal remains provide an assemblage like no other. Skeletal remains offer not only corporeal evidence of human existence, but also a biological material that has been crafted and shaped through the cultural experiences of life and death. (1) The creation of Muslim identities through death and dying has not been well-​ studied in sociocultural anthropology, even though there is work on Muslim identities within the context of the United States (Abdul Khabeer 2016; Mir 2014). Bioarchaeologists have explored how social inequalities, religion, gender, and conflict are manifested in human skeletal remains (Goodman

Introduction  15 1998; Torres-​Rouff 2011). Following this approach, I conceptualize the dying body as “a site of biography”13 and, therefore, I start my analysis of Muslim identity from the dying body in the hospital room. I  query how the very act of dying and a person’s relationship to the dying patient and the dying body informs religious identities and religiosity. I  combine medical anthropology and bioarchaeology with the scholarship on “becoming” to make the dying body and death my analytical focus, which is in contrast to literature in sociocultural anthropology that views death as an end or as just a lens to examine something else. Scholars have examined how this end is defined medically and legally, the ethical quandaries associated with death, and how social forces and religion work upon the body and shape care (Chapple 2010). Instead, I  question what this looks like in reverse and re-​tool death into something other than an end. I will show that Muslim relatives formed their own religious identities based upon what was happening to their relatives’ dying bodies, including the physical changes that accompanied dying and indicated that death was near. This is also true for some Muslim patients as well as they grappled with the physical changes occurring in their own dying bodies. In addition, I will illustrate how Muslim health care providers who cared for patients at the end-​of-​life also found themselves re-​thinking their own faith in light of their medical practice—​administering tests, doing procedures, or even removing a patient from life support. I attempt to shape to how anthropologists think of the human body cross-​culturally; usually we see the body as socially and culturally constructed (Gremillion 2003), and while bodies are constructed to an extent, I also think through how physical changes in the dying bodies I observed and talked about combined with practical matters involved in health care informed the ways that patients, families, or clinicians thought of themselves as Muslim and viewed their own faith.

Research My research on Muslim identities, death, and end-​ of-​ life care is firmly grounded in sociocultural anthropology (Bernard 2011). I have been engaged in research on this subject since 2013, with data collection ending in 2017. I divided my data collection into three main parts that generally corresponded with my research questions. First, I  performed an analysis of Islamic and medical discourses about illness, the body, and death that are prominent in the United States and I explored how they compared to and interacted with each other. I do not use the singular term “discourse” because there are multiple discourses that exist within these two domains. Michel Foucault (1974) writes, “I am supposing that in every society the production of discourse is at once controlled, selected, organised and redistributed according to a certain number of procedures” (216). Engaging with Foucault, I see Islamic and medical discourses surrounding death and dying as being produced within the particular context of the United States—​with this it is also important to remember that the US health care system is also socially and culturally

16 Introduction produced (discussed more in Chapter  1). Methodologically, I  draw inspiration from Gordon Waitt (2005) who suggests that the goals of discourse analysis are to explore the outcomes of discourse in terms of actions, perceptions, or attitudes … to identify the regulatory frameworks within which groups of statements are produced, circulated, and communicated … and to uncover the support or internal mechanisms that maintain certain structures or rules over statements … rather than to discover the “truth” or the “origin” of a statement. (164–​165) Second, I  examined the institutional practices that reflect and exist within medical discourses in particular about end-​of-​life care and learned more about the experiences of diverse Muslim patients, families, and health care providers within medical settings in the DC metropolitan region. And finally, I delved into how death and the process of dying, with particular attention to the interaction between the physiological changes in the body and the social forces that impact care, inform religiosity and Muslim identities within the context of the United States. I wanted to better understand what it means to identify as Muslim in the US at this point in time for my participants. Given that death and dying are very personal matters and can get at the center of religious beliefs, I felt that they were an excellent means through which to investigate how someone defines themselves as Muslim. In the remaining parts of this section, I will detail the various research activities that I conducted during each of these three phases that led me to form the arguments and draw the conclusions that I present in this book. Part I: Discourses My first step was to gain a better understanding of the multiple Islamic discourses that surround illness and death. To do so, I performed a review of literature in anthropology and related fields, such as history, sociology, religious studies, and philosophy. I  also searched fatāwā (plural of fatwa, also written as fatwas) through sources like the Assembly of Muslim Jurists of America (AMJA) and the Fiqh Council of North America (FCNA) for those on end-​of-​life care, pain management and medications, particular diseases (e.g., cancer), use of medical technologies and interventions, and death. Moreover, I monitored websites where sheikhs14 would give lectures, advice, and answers to questions based on their reading of sacred texts and Islamic teachings about particular situations, such as whether or not a family member with a terminal illness should be removed from life support and allowed to die. I did my best to make sure that the sheikhs were based in the United States or had ties to the US, but many are from abroad, such as the sheikh that founded and runs “Islam Question and Answer.” Even though I collected information

Introduction  17 from different sites and do include it in the book, I  have attempted to not rely heavily on those who I could not link in some way to North America. As with any online research, I always tried to check the credibility of the source by researching the sheikh’s background and I  double checked information against the literature and my own interviews. I also reached out to organizations that provide religious guidance. I  connected with the Islamic Medical Association of North American (IMANA), which was founded in 1967. According to its website, IMANA “is a leading resource and network for American-​Muslim physicians, dentists, and other healthcare professional in North America.” The association “aims to educate the Muslim community and public at large in the areas of disease and promotion of healthy lifestyles.” I  had the chance to interview three current and former members of IMANA who served on executive committees. IMANA has an ethics committee that “deliberates on contemporary biomedical issues affecting patients, healthcare providers, and institutions using principles from Islamic and secular paradigms.” In addition to these interviews, I gathered and analyzed resources from IMANA’s website on related topics and monitored its social media for relevant posts. All of the committee members I  interviewed are physicians, one is located in the DC area, who I met face-​to-​face, and I spoke to the other two on the phone since they practice in other parts of the country. I used information I gained from organizations like IMANA and from my literature review, online research, and review of fatāwā, to develop and then revise my interview questions for imams in the local area. I had the opportunity to interview three Sunni imams in-​person, in which we discussed their experiences providing guidance to patients and families about end-​of-​life care, with particular attention to what services or interventions they stated Islam permits and does not permit. I also inquired about their understandings of Islamic principles about death and the religious sources they drew upon. Almost all of my participants, with a few exceptions, who identified as Muslim stated they are Sunni, the majority of Muslims worldwide and a little over half (55 percent) of the Muslim population in the United States (Lipka 2017). I did not intend to exclude participants who identified as Shi’i or did not associate with a sect, but since I used a mix of convenience and snowball sampling, I was unable to completely control for this factor, nor was I able to totally control for ethnicity, race, gender, and cultural backgrounds of my participants. Also, within Sunni Islam, there are several differences based on schools of jurisprudence, a few of which are also represented in my research. The Washington, DC area provided an excellent setting for my research given its diverse population and number of mosques. As of 2011, there were 62 mosques in Virginia, seven in the District of Colombia, and 54 in Maryland (Bagby 2012). Virginia ranks in the top ten states in terms of the number of mosques. The majority of Muslims, regardless of sect, who reside in Virginia and Maryland live in the counties near DC (ASARB 2012). I do recognize that conducting my research mainly in the suburbs of the nation’s

18 Introduction capital means that my results may look different than if I conducted a similar study in a less culturally, religiously, and economically diverse region of the country, but at the same time, basing my study here allowed me to capture multiple and nuanced experiences of Muslims during end-​of-​life care. I am cognizant that mosques in the DC region will serve different populations. This was brought to my attention by the imams who clarified during our interviews that practitioners were predominantly African American, had immigrated from a particular region to the US, or were mainly converts to Islam. In my analysis, I consider the contradictions and differences that arose during my fieldwork in addition to the patterns and similarities. I do not try to fit my textual or ethnographic data into one religious or moral framework. In addition to speaking with imams in the region, I  attended local and national conferences on religion, medicine, and health as well as trainings and seminars aimed more at health care providers on clinical ethics, palliative care, aging, advance care planning (ACP), and death. These events, combined with Grand rounds and other lectures at the particular hospital where I conducted fieldwork and lectures by and interviews with academics, such as a bioethicist, gerontologist, and Islamic scholar, allowed me to gain more insight into dominant medical discourses, policies, and practices in the United States surrounding end-​of-​life care. I  also performed a visual and textual analysis of materials on illness, health, and death from mosques, health care facilities, and different organizations, such as those that provide support to patients and their families after a cancer diagnosis. Once I felt that I had a foundational understanding of Islamic and medical discourses, I then moved on to conducting ethnographic fieldwork at the hospital to see how they circulated and were translated among patients and their loved ones and among health care providers. Part II: Institutional practices I conducted four months of ethnographic fieldwork at a hospital in the fall of 2015, with follow-​up trips in the spring and fall of 2016. The hospital is located in a suburb of Washington, DC about 30 minutes from the Capitol Building in downtown. The hospital is well-​known in the region and offers a wide array of specializations. This hospital has both physician employees and independent practitioners. Patients may be referred or transferred to this hospital from smaller ones in the Mid-​Atlantic region. It is intended for extremely sick individuals, those requiring complicated surgeries, or those with rare health conditions that require special treatment. One of the physicians I interviewed for my research asked me, as I was pregnant with my second child at the time of my fieldwork, where I was going to deliver. I said that my doctor delivers at another smaller hospital (about a half-​hour away). He said that is preferable; he explained people should not come directly to this hospital if they are not very sick or referred specifically to it, but rather, go to other smaller hospitals in the region for care—​such as for low-​risk deliveries

Introduction  19 without foreseen complications—​or the emergency department (ED) and then be transferred as needed. I will not go into further details here so that I do not identify the hospital or its staff. For my fieldwork, I paired with a multi-​disciplinary care team at the hospital that often saw patients who were nearing the end of life and/​or facing serious illness. The team comprises different providers, including physicians (MD/​DO), mid-​ level providers (such as nurse practitioners), social workers, and chaplains. During research leave from my home institution in 2015, I attended the team’s morning meetings at least twice per week to hear the team members offer updates on their current patients. I was able to review the patient roster each morning and the written notes on this roster about the patients, such as how many days they had been in the hospital, their code status—​Full Code, Do Not Resuscitate (DNR), or Allow Natural Death (AND)—​ and their religious affiliation. This was a voluntary question. However, due to regulations surrounding patient privacy, I  never retained these rosters and placed them in the team’s box of papers to be shredded after the meetings. I took notes during the meetings, but I refrained from using any real names in them. I took notes on the vast majority of patients that the care team discussed. Even though the patients may not have been Muslim, being able to hear about their cases gave me greater knowledge about how the US health care system works and frames end-​of-​life care and about the different policies and rules at the hospital, state, or national level that impacted health care and decision-​making (e.g., Medicare and Medicaid coverage). Listening to all cases also provided me the chance to see some of the challenges that health care providers face on a daily basis when it comes to caring for patients who are nearing the end-​of-​life, the ethical predicaments they are sometimes placed in, how they operate within the complex US health care system that comprises many bureaucratic layers, and how they consider religious beliefs of patients and families as they revealed diagnoses and discussed available treatment options. On a few different occasions, I  witnessed the family request interventions that the care team members believed would only cause more harm than good or only prolong suffering, and it was telling to see how they carefully navigated these types of situations—​respecting the family’s wishes, but at the same time, following their clinical training and abiding by ethical guidelines. During my time with the care team, I  had the opportunity to directly observe and follow seven Muslim patients as they neared the end of life. However, overall, from my fieldwork at the hospital, I collected data on 36 Muslim patients in total, including the seven I directly followed. The other data come from current and past Muslim cases that I  talked about with Muslim and non-​Muslim physicians and with other health care providers on the team, cases I heard discussed in the care team meetings, and cases that I was able to observe briefly, but could not follow over a period of time (like the seven I directly observed) due to the patients either passing away quickly or being discharged shortly after they were admitted.

20 Introduction I conducted formal interviews with at least one family member of each of the patients I  directly observed and followed and was also able to conduct interviews with five Muslim physicians at the hospital and one volunteer Muslim chaplain who visited patients there when needed. I had the chance to interview two other Muslim chaplains from other hospitals in the United States (both located on the East Coast) about their work with patients who are nearing end-​of-​life in addition to a Muslim physician who was involved in establishing a free clinic in the DC area. I abstained from audio-​recording interviews with family members because they took place in the hospital rooms of the patients, but all of the other more formal interviews were recorded and later transcribed and double checked for accuracy by a student research assistant and/​or me. Numerous informal conversations took place at the hospital that I documented in my notes, such as with the team’s medical director, various care team members, nurses, physicians, and other staff members. I  also include information from conversations with those in my own professional and personal networks. Muslim physicians play a key role in my research in part because there exists a great deal of work on patients’ religious beliefs, but as Clive Seale (2010) notes, in comparison, health care providers’ religious beliefs and how they shape the care they provide at the end-​of-​life has been studied relatively little in comparison. I found that when I talked with Muslim physicians about particular patient cases at the hospital, or just about their work in general, they also talked about their own faith in some ways. This fact exemplifies what Michael Wilson and colleagues (2013) discovered in their research on physician attitudes and beliefs, which they found do play a role in their decisions around care in the intensive care unit (ICU). I explore religious identities among Muslim physicians in this book as well because “human beings are products of their environment as well as its creators” (Gaylin 1996, 44 cited in Frank et al. 1998, 405). The importance of including Muslim health care providers in my research supports my claim that the physical changes in the dying body informs religious identities of others connected to the dying person or to the dying or dead body in some way, thus showing that identity formation is connective and reflective in nature, and not just an individualized process. Part III: Identity creation and transformation At various points throughout the data collection period, I  qualitatively analyzed my transcripts, fieldnotes, and other collected materials following the strategy outlined by Louis Vivanco (2017): a first read-​through with no additional note-​taking, a second pass identifying some broader themes and patterns emerging from the text and other materials, and a third fine reading to finalize the codes assigned to different passages. Through the process of analyzing my materials, I discovered that my participants’ interactions with the US health care system during times of serious illness and end-​of-​life

Introduction  21 care—​either for their loved ones or as a provider—​shaped their identities as Muslims and either reified or contested specific religious beliefs that they held or their understandings of Islamic principles. During data analysis, I concluded that religion was not discussed as an independent variable when it came to end-​of-​life care, but rather, it was configured within the larger social, political, and economic forces in the United States. It is from this perspective that I write this ethnography, as I highlight how end-​of-​life care and the process of dying is what informs how many of my Muslim participants have come to understand their faith and have come to define themselves as Muslim. I do acknowledge that identity formation is not innocent nor is it devoid of influence from other forces, so I try to take a bottom-​up approach where religion is entangled with the local environment and analyze how identities are created or transformed organically, rather than a top-​down approach that assumes religion is a key predictor of decisions and practices during end-​of-​life care. Using my data, I hope to highlight that using the paradox of “actively dying,” with active being usually thought of as lively, vigorous, and positive, and being peculiarly placed next to the word dying, which represents deterioration, decline, and failing, helps us to examine how death is a meaningful social and religious process and is a starting point to explore religious identity.

Anthropology, Islam, and health care I engage with the concept of “authentication” as put forth by Lara Deeb (2006), who argues we should “[capture] the nuances of ‘truth’ ” (20) that are important to Muslims. Deeb and Mona Harb (2013), in their ethnographic study of leisure and Islam in Beirut, Lebanon, also draw on the concept of “authentication.” They write, “There was a perceptible tension between the idea, on the one hand, that religious commitment was a conscious process of coming to authenticated Islam and understanding why you do what you do” (Harb and Deeb 2013, 20). Harb and Deeb found in their study of café culture in Beirut that “there are myriad possibilities for Islam and leisure to come together” (2013, 14). I find “authenticated” Islam, as advanced by Harb and Deeb, useful to convey the fluidity of religious meaning surrounding health practices and decisions and the co-​constitution of religion and cultural and social forces. Through my analysis of Muslims’ interactions with the US health care system, my objective is not to get at the “ultimate truth” or “correct” interpretation of Islam, but rather, to explore how death and dying shape Muslim identities in the context of the United States. I  draw from Esra Özyrürek’s (2015) approach to studying German converts to Islam in that I  examine Muslim identities, religious beliefs, and religiosity within “the context of social and political developments” (3) in the United States, and particularly within the health care system itself. Özyrürek (2015) writes of “the complexities of being German and Muslim along with the coverts’ desire to bring these identities together” (45). What I try to show in this ethnography is how

22 Introduction my participants think of themselves as Muslims, and as Americans, and how they come to understand their faith through experiencing death and their connections to the dying body, as well as through their interactions with the health care system during end-​of-​life care. Literature has shown that a coherent Islamic theology does not exist (Inhorn and Sargent 2006). In her exploration of embodiment and Islam, Ingrid Mattson (2019) states, “I will not assert ‘orthodoxy,’ for orthodoxy is a claim, not a fact … Of course, even for religiously observant Muslims, theology and scripture are not determinative in shaping views about the relationship of the body to the person” (66). Following these claims, I  found it more productive in my research to explore how religious beliefs transect with other structural factors and institutions (economic, political, social) within health care to produce Muslim identities and to facilitate health care decisions. Anthropologists have masterfully demonstrated that the use of modern medicine may produce new ways of believing and new interpretations of religious principles (Hamdy 2012; Hughes Rinker 2013a; Inhorn and Tremayne 2012). My work advances this argument by showing that we must also consider how practical concerns about caregiving, negotiations with health insurance, contemplating medical recommendations, and keeping track of health records can also aid in this production. As I  will discuss in the next chapter, it is for these reasons that my ethnography is as much about Islam and end-​of-​life care and religious identities as it is about how death and dying take place within the US health care system today, and in the very recent past. Medical anthropologists have started paying more attention to the “mundane” parts of health care and have begun to turn these aspects into objects of ethnographic inquiry (see Hughes Rinker 2019 for an example). They have examined how topics and practices usually neglected by anthropologists, but yet are critical to health care, impact patients’ experiences and the patient-​ provider encounter. A  good example is from Linda Hunt, Hannah Bell, Allison Baker, and Heather Howard (2017) who analyze the ways that the introduction of and reliance on electronic health records (EHRs, also called electronic medical records or EMRs by some) and the “the transformation of health care into a practice that begins with, flows through, and ends with a computer” (403–​404) has informed health services and the care patients receive at the clinics in the US where they conducted their research. The Affordable Care Act, ACA, put in place under President Barack Obama in 2010, encourages and incentivizes the adoption of EHRs: These electronic tools serve as the infrastructure to implementing reforms that improve care –​many of which are part of the Affordable Care Act. Doctors and hospitals are using these tools to reduce mistakes and hospital readmissions, provide patients with more information that enable them to stay healthy, and allow for rewarding health care providers for delivering quality, not quantity, of care.15

Introduction  23 Jessica Mulligan (2016) looks at another major issue of health care—​ the financial side and payment—​that has not received much ethnographic attention, partly due to its routinization. She documents “there is almost no anthropological research that connects the process of financialization with health care restructuring and reform” (Mulligan 2016, 37) and contributes to the literature on marketization, neoliberalism, and care through her research in a health insurance company in Puerto Rico. In my analysis, I draw from this type of anthropological scholarship in order to account for how the very practical matters of health care, and especially end-​of-​life care, can sometimes be the most powerful factors in shaping religious beliefs, religious identities, and decision-​making among my participants. During my fieldwork at the hospital, I heard numerous conversations among the care team, and other staff, about patients’ insurance benefits, the need to connect families with local companies that can set up equipment at home (like a hospital bed) before patients were discharged, and their worries about who was going to actually care for the dying patient outside of the hospital. Given this, in this book, I  consider how the highly tangible concerns—​such as wondering if insurance would pay for an entire hospital stay or home health care or fearing the time and energy it would take to care of a dying family member at home, also shape Muslim identifies and how my participants came to define themselves as Muslims in the United States. I  found these factors frequently played just as an important role in the creation and transformation of Muslim identities as the introduction of biomedical practices and interventions did.

The topic and organization of the book The participants and materials that I discuss in this book are part of a much larger story about Islam, death and dying, and identity that has been unfolding and will continue to unfold in the United States. This story also includes policies and politics at the national, institutional, and local levels; changing social, cultural, and religious values; shifting meanings of citizenship and belonging; and defining medical and religious ethics. I  chose to focus my research on Muslims not only because of my previous research in Morocco on Islam and reproductive health, but also because of the national climate and more recent discussions about immigration, xenophobia, American values, religion and the public sphere, and race/​ethnicity that have become a major part of everyday life in the United States for many people. Wahiba Abu-​Ras, Farid Senzai, and Lance Laird (2012) talk about how September 11, 2001 fits in the framework of “cultural trauma theory” (11). Muslim Americans physicians who participated in their study stated they had experienced multiple types of discrimination, including “overt discrimination” and “covert discrimination,” which “involved more subtle forms, such as avoidance, the communication of negative or denigrating messages about Muslims, or exclusion by colleagues and neighbors” (Abu-​Ras, Senzai, and Laird 2012, 14).

24 Introduction More recently there has been work in epigenetics that suggests “that not only the inherited DNA itself but also the inherited epigenetic instructions contribute in regulating gene expression in the offspring.”16 Research on trauma and epigenetics, such as that among Holocaust survivors, notes, “Recent advances in the field of epigenetics are now revealing a molecular basis for how heritable information other than DNA sequence can influence gene function” (Kellerman 2013, 34). Given scholars and the media have recalled how Muslim Americans experienced discrimination, isolation, and even physical violence in the years following September 11 and have more recently experienced the effects of President Trump’s “nativist and anti-​ Muslim platform,”17 it is worth noting that there may be “ ‘epigenetic inheritance’ of stress” passed down through the generations of Muslim Americans. We also must remember that some Muslims who immigrated from countries in the Middle East, Africa, and Asia to the United States did so to escape torture, war, and violence in their homeland—​and this was true for some of my participants in this study. They suffered from potential post-​traumatic stress disorder (PTSD) upon arrival. Sociologist Frank Furedi states, “Identity formation is a cultural accomplishment.”18 Regardless of whether the effects of trauma can be directly passed down genetically, which is a question worth further scientific investigation, “what seems clear is that collective trauma is transmitted culturally, and it profoundly affects a society’s cultural and social DNA.”19 My reason for focusing on Muslim patients, families, health care providers, and leaders in my ethnographic research and this resulting book is twofold. First, I try to counter the Othering of Muslims that has occurred in the United States, and that we have seen in particular since 2001. Elsadig Elsheikh, Basima Sisemore, and Natalia Ramirez Lee (2017) write, The current political climate in the United States reflects a new reality influenced by a populist leadership that occupies the highest office in the land, colluding with a reemergence of white supremacy, that is being (re) used as a tool to drive a wedge between poor white people and people of color on the one hand, and to increase fearmongering and anti-​Muslim sentiment in American society on the other hand. Together, this has given rise to anti-​black, Islamophobic, anti-​immigrant, and anti-​refugee grassroots movements increasing racial prejudice. (9) I try to provide a counter argument to the Othering of Muslims and the discourse of “exceptionalism” that often surrounds Muslim Americans. In the case of health care, I would argue that this “exceptionalism” actually develops out of the push to offer culturally competent care, and cultural competence more generally as it is operationalized in the United States. I try to shift the narrative. Instead of cultural competence, I find it more productive to focus on the structural considerations of health care in this book—​and draw on

Introduction  25 what anthropologists and social scientists have deemed “structural competency” (Holmes 2012)—​in my examination of religious identities. Building on this point, my second reason for focusing on Muslims is the fact that the health care system in the United States is Eurocentric and hegemonic. As I will discuss in the next chapter, I agree that biomedicine and the US health care system are cultural constructs with specific histories as historians and anthropologists have eloquently demonstrated; however, I want to show how Islam as is understood and practiced by my participants in the United States does not go against the system, but rather the two work together in the creation and transformation of religious identities and in the provision of care. As I have written elsewhere (Hughes Rinker 2019), there are aspects of the health care system, most notably the mundane ones that we often take for granted (e.g., making appointments and cleanliness) in the United States, that we could argue are actually built upon key principles in Islam. This book is divided into two parts. After this introduction, the first part focuses on discourses and policy. Chapter 1 delves deeper into my own theoretical orientation and highlights the cultural specificities of the biomedical system and logics within the United States. It lays out the cultural embeddedness of the biomedical procedures and the dying processes within the United States, particularly as I  observed in my fieldwork at the hospital. The first chapter will provide context for the presentation of my ethnographic data in the remaining chapters of the book and introduce the readers to the medical settings in which I worked. It will offer insight into how the US health care system has framed death, dying, and end-​of-​life care by looking at policies, regulations, and initiatives that were important to my participants and/​ or impacted their work. The second chapter builds upon the first chapter by offering an historical analysis of how particular Islamic teachings and discourses about end-​of-​life care, disease and illness, treatment, and the body have become dominant in the United States and it will offer some comparisons to other countries where Western scientific medicine is the hegemonic model. Given that Islam, like many other religions, is not monolithic or homogenous, I do not try to pinpoint how principles of biomedicine and Islam converge or diverge from each other, but rather, I consider how prominent discourses, beliefs, and practices are in dialogue and actually build upon or co-​constitute one another. This chapter combines an overview of Islamic tenets with a more nuanced look at what religious authorities in the United States say about particular health practices that are often part of end-​of-​life care. The second part of the book centers on my textual analysis, the experiences of my participants, and my ethnographic fieldwork. Chapter  3 focuses on Muslim health care providers who treat Muslim and non-​Muslim patients as they near the end of their lives. I disentangle how the care these providers offer to dying patients and their bodies informs their religious beliefs and the ways that they think of themselves as Muslim. By analyzing our conversations and my observations of the patient–​provider encounter, I look at how their medical training and the services they administer to patients shape how they believe

26 Introduction and define themselves religiously. Chapter 4 then moves to caregiving inside and outside of the hospital with special attention to the family members of dying Muslim patients. It shows how financial, physical, and social concerns about caring for family members’ dying bodies impact their understanding of Islam and how they described themselves in terms of their faith and what they believe. One goal I have for this chapter is to probe what being a “good” Muslim or Muslim son, daughter, husband, or wife means given the responsibilities and physical demands as well as the emotional aspects of caring for a dying family member. The final chapter, Chapter 5, focuses on the final moments of biological life to examine how these moments, as well as those immediately after death, cause patients and family members to re-​evaluate faith and their belonging to a Muslim community. The chapter shows how they grapple coming to terms with their religious identities and how relatives formed their identities in relation to the dying and dead body. The conclusion circles back to some of the issues I raised in the introduction. It looks at more of the bigger questions of religious identity in the United States, as it inquires what it means to be Muslim in the social, political, and economic environment of the country today—​specifically the Mid-​Atlantic region—​and perhaps in the near future. It also ends with considering what my project says about culturally competent health care and vulnerability. I reflect on how cultural competence may open up new vulnerabilities for patients and their families and create even further imbalances within the power relations that exist in health care. Furthermore, I try to intervene into how we research and write about religion and death and dying.

Notes 1 These are volunteer Muslim community members who visit patients at the hospital regardless of patients’ religious affiliations, even though they are most often called to see Muslim patients and families. Some are imams and some are not. I  adopted the term Muslim chaplains because this is how they described themselves. Moreover, in the United States there is the Association of Muslim Chaplains and the Islamic Chaplaincy Program at Hartford Seminary. I do not use the term mufti in this book for Muslim chaplains, as they do not have the authority to make religious rulings or provide expert advice, nor did any of the Muslim chaplains who I spoke with as part of my research make the statement that they did so. 2 This is taken from the New International Version of the Bible. 3 According to the CDC, “Terms such as senescence, infirmity, old age, and advanced age have little value for public health or medical research.” These terms should be avoided on a death certificate. If “old age” is reported, additional information about the cause of death is required. See https://www.cdc.gov/nchs/data/ misc/hb_cod.pdf under the section “Common problems in death certification.” 4 For more on how medicine has transformed in the United States with the increased reliance on technology and on how physicians are trained and enculturated to thrive and not to fail, see: Gawande, Atul. 2015. Being Mortal Illness, Medicine

Introduction  27 and What Matters in the End. New York: Metropolitan Books; Gawande, Atul. 2007. Better: A Surgeon’s Notes on Performance. New York: Picador. 5 I am grateful to one of my undergraduate research assistants, Jesse Roof, who helped me transcribe interviews and pointed this out to me as a main theme that came out of the ones he worked on. 6 Hannig, Anita. 2017. “Death and Dying 101: A Study of Cross-​cultural Attitudes toward Mortality Can Help Young People Accept Death as a Part of Life.” Sapiens, October 3. Accessed January 24, 2020, www.sapiens.org/​body/​death-​and-​dying/​. 7 Some sociocultural anthropologists who focus on death have interrogated the meaning of “actively dying.” For an example, see: Richards, Naomi and Marian Krawczyk. 2019. “What Is the Cultural Value of Dying in an Era of Assisted Dying?” Medical Humanities. July 26. doi: 10.1136/​medhum-​2018–​011621. 8 See also Zitter, Jessica Nutik. 2017. Extreme Measures: Finding a Better Path to the End of Life. New York: Avery. 9 Mandaville, Peter. 2017. “The Ambivalence of Islam in U.S. Foreign Policy,” Ali Vural Ak Center for Global Islamic Studies Lecture Series. Fairfax, Virginia, March 7. 10 I am thankful to Yasemin Ipek and all of the attendees who pushed me on this point during the Q&A after a talk I gave at the Ali Vural Ak Center for Global Islamic Studies at George Mason University. 11 I have changed all names in this ethnography to protect my participants. I have also fictionalized place names and only provide generalized information about geographic locations. 12 “Executive Order:  Protecting the Nation from Foreign Terrorist Entry Into The United States,” www.whitehouse.gov/​presidential-​actions/​executive-​order-​ protecting-​nation-​foreign-​terrorist-​entry-​united-​states-​2/​. 13 I would like to thank Nawa Sugiyama for helping me with this phrase. 14 This is a religious leader. In some parts of the world, a sheikh is the head of a village or community. A  well-​known early ethnography is Fernea, Elizabeth Warnock. 1965. Guests of the Sheikh:  An Ethnography of an Iraqi Village. New  York:  Anchor Books. 15 DeSalvo, Karen. 2014. “Survey Says: HER Incentive Program is on Track,” Health IT Buzz, January 17. Accessed February 13, 2020, www.healthit.gov/​buzz-​blog/​ from-​the-​onc-​desk/​survey-​ehr-​incentive-​program. 16 Max-​ Planck-​ Gesellschaft. 2017. “Epigenetics between the Generations:  We Inherit More than Just Genes.” ScienceDaily, July 17. Accessed July 29, 2020, www.sciencedaily.com/​releases/​2017/​07/​170717100548.htm 17 Hawley, George. 2019. “Are Trump Supporters Anti-​Muslim? A ‘Muslims in the West’ Reaction Essay,” The Brookings Institution, December 4, Accessed February 27, 2020, www.brookings.edu/​articles/​are-​trump-​supporters-​anti-​muslim/​. 18 Diab, Khaled. 2015. “The Ghost of Conflicts Past, Present, and Future,” Al Jazeera, August 27, Accessed November 2, 2020, https://www.aljazeera.com/ opinions/2015/8/27/the-ghost-of-conflicts-past-present-and-future/ 19 Ibid.

Part I: Approaches

1  Death and dying within the US health care system

Dr.  Hamed, who identifies as Muslim, specializes in internal medicine and pulmonary diseases. He completed medical school abroad, but has spent the majority of his career on the East Coast of the United States, either as a practicing physician or as professor of medicine. In his later career, Dr. Hamed served as a consultant, advising international medical institutions on how to establish academic programs and research centers and aiding in physician training and development. This line of work took him to Saudi Arabia for a few years. During our conversation, I asked Dr. Hamed if he had noticed any differences between how the health care system in Saudi Arabia approached end-​of-​life care as compared to the health care system in the United States. He responded that he had observed some discrepancies in end-​of-​life care in the two countries. He responded, “A little bit, the patients, I think hang on to the machinery a little bit longer there.” He continued, The difference basically was that the basic care is the same, but in the intensive care unit [in Saudi Arabia] the doctors used to have a harder time getting the patients off the machines and basically calling it quits when everything has been done. When I probed as to why Dr. Hamed thought this was the case, he said that it could be cultural. He also noted that he was there to help develop a medical institution and that “they haven’t had time to absorb all the education and all the stuff about the different technologies.” Dr. Hamed stated Saudi Arabia “has developed a very interesting response to [family demands to keep a patient on life support] that would not be accepted in the United States.” In Saudi Arabia, for example, if three physicians come to an understanding that everything has been done and the patient’s condition would not likely improve, they would create a DNR order for the patient. I confirmed that he meant the physicians can essentially put a DNR in place by refusing to perform resuscitation measures without the family’s input, and he said yes. Dr.  Hamed continued that this differs from the United States, in which a patient, or if the patient is unable to speak for themselves their family or proxy, must agree to

32 Approaches such an order that halts resuscitation attempts. The Permanent Committee for Islamic Research and Issuing of Fatwas in Saudi Arabia did, in fact, issue a fatwa that states, “If three physicians have decided that it is inappropriate to resuscitate a patient who is suffering from a serious irremediable disease and that his/​her death is almost certain, there is no need to use resuscitative measures.” In addition, the fatwa claims, If the patient is mentally or physically incapacitated and is also suffering from stroke or late-​stage cancer or having the severe cardiopulmonary disease and already had several cardiac arrests, and the decision not to resuscitate has been reached by three competent specialist physicians, then it is permissible not to resuscitate. (Chamsi-​Pasha and Albar 2017, 36)1 Dr. Hamed was clear that he was not aware of such a response in other Muslim countries because in his opinion, “most Muslim countries are not in a stage of extensive development” when it comes to their health care systems. He was referring to the fact that they do not have the infrastructure or facilities like Saudi Arabia, which lead to complicated questions about the use of technology and machines to keep people alive. Similarly, Dr. Fudadin, specializes in internal medicine and pulmonary and critical care and currently is a professor of medicine. He identifies as Muslim and moved to the United States from a non-​Muslim majority country to attend medical school, and then complete his internship and residency. He has a personal and academic interest in end-​of-​life decision-​making from an Islamic perspective. I had the opportunity to speak with him about his work on this topic. He explained, similar to Dr. Hamed, that he had several opportunities over the course of his medical career to travel to other countries. Dr. Fudadin said that he had been to places such as Iran, China, and Dubai and explained, We’ve been going to many different places and when we go there we get a flavor as to what type of medicine they are practicing and what we’re noticing is that it is easier, from my perspective, to care for patients at the end of their lives, or near the end of their lives in countries outside of the United States than it is in the United States. I asked why he concluded that end-​of-​life care is more difficult here. He responded, Not so much about the policy, it’s because of the system and it’s because of what’s available. It is because there is too much available here. Too much in the sense that there is an over usage of what’s available. After recalling a personal example of a family member who had a stroke and whose wife sought his advice as a physician on having more tests and

Dying within the US health care system  33 procedures done based on what she has seen on television or read online, Dr. Fudadin stated, You know information is always available. And if you did the one test, well, can’t we do another test to find out a little more information? That type of thing is going on, so there’s a waste I  think by people across the board. In the United States, there have been long discussions and debates among health care administrators and policy makers and within health services research2 concerning waste in the health care system, which commonly refers to tests or procedures that are performed without a known benefit to the patient’s condition or to their quality of life (Delaune and Everett 2008). The notion of “waste” is especially salient in conversations about caring for older and perhaps terminally ill adults. Dr. Fudadin even stated during our conversation, If someone is near the end of their life, has widespread metastatic cancer, why should we spend a lot of resources on that patient? Fighting to keep them alive for a week, two weeks, or even six months longer. You don’t do anything to hasten their demise, but you don’t expend a lot of resources doing it because it is a waste of resources. The concern with waste—​coming mostly from the government and the administration of health care organizations and institutions—​was evident in the fining of hospices in the United States for keeping patients alive longer than physicians had predicted, given that hospice patients are to be deemed to have six months or less to live and must reject the use of further curative treatments while in hospice care. An article in the New York Times, reads, Hundreds of hospice providers across the country are facing the catastrophic financial consequence of what would otherwise seem a positive development: their patients are living longer than expected. Over the last eight years, the refusal of patients to die according to actuarial schedules has led the federal government to demand that hospices exceeding reimbursement limits repay hundreds of millions of dollars to Medicare.3 Some research has shown that hospice patients live longer and even “graduate” from hospice due to the wide variety of services that it offers—​ not just treating the symptoms and providing comfort care to patients, but also giving attention to emotional health, spirituality or religious needs, and overall well-​being (Herbst 2004; Pizzi 2015). The New  York Times article poses that patients perhaps are living longer due to changes in frequently seen diseases:

34 Approaches In the early days of the Medicare hospice benefit, which was designed for those with less than six months to live, nearly all patients were cancer victims, who tended to die relatively quickly and predictably once curative efforts were abandoned. But in the last five years, hospice use has skyrocketed among patients with less predictable trajectories, like those with Alzheimer’s disease and dementia. Those patients now form a majority of hospice consumers, and their average stays are far longer. (Sack 2007) In addition, we can see this concern with waste and its cost underlying the attempt to restructure health care in the United States so that it is not so siloed; this silo structure prevents health care providers from exchanging notes or speaking to one another about a particular patient, which could lead to the replication of tests or drug interactions, for instance. (Drug interactions, of course, could cause further medical expenses if the interactions negatively impact the patient’s health and require them to seek more extensive care.) An example of this restructuring is the Patient Centered Medical Home (PCMH), which the American College of Physicians describes, as, “a care delivery model whereby patient treatment is coordinated through their primary care physician to ensure they receive the necessary care when and where they need it, in a manner they can understand.” PCMH aims to break down the silos, or at least to facilitate connections between the multiple components of care, through the use of “registries, information technology, health information exchange and other means to assure that patients get the indicated care when and where they need and want it in a culturally and linguistically appropriate manner.”4 Coordinated care as a way to prevent waste and to keep costs down, is not just needed across different health care facilities and providers, but also within a facility itself. During my fieldwork, the hospital implemented a policy in which hospital beds could be turned into hospice beds for a certain period of time. The hospice physicians were not employees of the hospital, but of an outside organization that serves the region, and therefore had to double chart—​once in the hospice organization’s health record and once in the hospital’s electronic health record so that nurses and other providers at the hospital could be kept up-​to-​date of the patient’s condition, wishes, and needs.5 One of the physicians on the care team raised the issue of co-​managing patients’ pain in one of the care team meetings that I attended. He said that he had ordered pain medication for a particular patient that he recently started seeing, but then the attending physician upped the dosage too rapidly, which caused the patient to have nausea and vomiting. It becomes difficult when two teams are both trying to manage a patient’s pain and symptoms. The confusion between them only leads to the patient experiencing greater suffering. In a similar vein, the care team expressed concern about patients being placed on different floors at the hospital. The patients who were dying were being placed in random in-​patient beds. The team expressed that some nurses on the

Dying within the US health care system  35 floors, while good at their jobs, were often not prepared to handle these types of cases. One physician explained that a Charge Nurse6 on one of the floors at the hospital told him what they were doing to the patient was unethical. This is because the team had to sedate the patient and use restraints in the bed when he was awake. This patient was an IV drug user and had several neurological problems. He constantly tried to rip out his IVs when he was awake; the choice was to use restraints or to increase the sedation medication until they were able to control all of his symptoms. The patient’s family had not come to a decision about what should be done in terms of care given the patient’s health was declining. The patient was deemed unable to make decisions for himself due to his mental status. In the meantime, the doctor explained that these were their options and they were choosing to sedate him for now until the family made a decision rather than keep him in physical restraints 24/​7. The nurse said in all the years of her being a Charge Nurse she had never seen this and did not think that it is the right thing to do. The doctor tried to have a conversation with her about it so that she knew their reasoning, but she was not open to further discussions. A more extreme case involved a patient in his forties at the hospital who had a terminal illness. The medical director of the care team I was working with expressed her anger and frustration as she recalled the case during a morning meeting. The patient had a bronchoscopy (inserting a tube down your throat to examine your lungs). The procedure went well, but while in recovery, the patient crashed. Because of the advanced stage of his disease, he was DNR, but the staff in recovery performed cardiopulmonary resuscitation (CPR) on him. You should not perform CPR on a patient who has a DNR.7 But they were unable to revive him and he was placed on a ventilator. There was little chance that he would fully recover. After this had happened, the wife said that she would like to give him a few days, mostly to allow her younger children to say good-​bye to their father, but after that if he did not recover, she would remove his life support and allow him to pass away. The team talked about how the patient would have most likely died once he crashed after his procedure and were frustrated that because staff did not pay attention to his DNR status, the family had to deal with even more suffering as his dying was just being prolonged—​they were not hopeful that he would come out of his vegetative state. They did, in fact, remove him from the ventilator with his wife’s permission, as he never regained consciousness, and he died the same day. Kaufman (2005) reminds us in her seminal work on dying in the United States that hospice is “the quintessential metaphorical place for the reduction of suffering, fulfilled dying, and ultimate individualism—​ all values articulated by the educated middle class” (71). In her ethnography, Kaufman shows how values of the American middle class underlie hospice—​its structure, what it represents, and its overall purpose. Hospice is constructed based upon dominant ideologies. What I hope to do in the remaining parts of this chapter is to highlight the cultural and social embeddedness of the US health

36 Approaches care system. I open with the vignettes from my interviews with Dr. Hamed and Dr. Fudadin because they remind us that what has become normalized in the United States in terms of health care—​a plethora of available choices, a focus on patient autonomy and individual decision-​making, and a minimization of “waste” so care can be more cost-​effective for institutions and patients—​is not always the norm elsewhere for various reasons ranging from infrastructure and resources to cultural and religious beliefs and practices. They both highlighted in our conversations that, on the one hand, medical advancements have certainly helped many patients around the world and even created cures and vaccines, but, on the other hand, having so much now available in the United States can also become a hinderance to providing high-​quality care and fulfilling the true needs and wants of patients. Margaret Lock and Vinh-​Kim Nguyen (2010) even note, “It is commonly assumed that biomedical technologies, if equitably distributed, will dramatically improve the health and wellbeing of people everywhere” (1). In other words, the more the better, but Lock and Nguyen remind us that there are serious biological, cultural, and social considerations that need to be taken into account before making this assumption. Drawing on the argument that “the health care system is not disconnected from other general aspects of culture, just as a social system is not dissociated from the social organization of a group” (Langdon and Wiik 2010, 464), I aim to distill the cultural specificities of the US health care system, with particular attention to the Washington, DC region and the institution in which I conducted research, and to elucidate the specificities of the biomedical system and logics within the United States as they relate to end-​of-​life care. My intention is that the analysis here, based upon my interviews and observations in combination with my visual and textual analysis of a variety of materials, will provide a glimpse into the larger social, political, economic, and cultural context in which I understood and analyzed my ethnographic data related to Islam and religious identities.

Ethnomedicine, biomedicine, and how the Enlightenment shapes health care Ethnomedicine has long been of interest to anthropologists (Bhasin 2007). Ethnomedicine may be defined as, “the study of the medical systems or healing practices of a cultural group, the cross-​cultural comparison of such systems, and increasingly the study of the multiple use of different medical therapies” (Erickson 2008, 1). It was “pioneered as a subfield of cultural anthropology” and “some would argue a foundational concern” (Adams 2016, 11) of medical anthropology. The English anthropologist and physician W.H.R. Rivers (2001[1924]) is a key figure in the development of ethnomedicine. Rivers argued that medicine, religion, and magic are abstract terms and there must be an investigation into the historical and social processes that construct them: “The practice of medicine is a social process, subject to the same laws, and

Dying within the US health care system  37 to be studied by the same methods as other social processes” (2001[1924], 39). Vincanne Adams (2016) writes, I want to remind us that at the heart of much of what we do in medical anthropology is a fundamental set of concerns about how people attempt to heal. How they define disease and health, how they make claims about the legitimacy of their culture in and through medicine, and how medical systems reflect basic cultural claims (even about nature and the body). (12) Early studies in ethnomedicine tended to focus on non-​Western health systems and healing practices, such as herbs and teas, religious rituals, and locally trained healers like shamans: “It implies something other than biomedicine—​something more ethnic, scientific, and magical” (Erickson 2008, 1). However, “biomedicine—​the West’s ethnomedicine” has been included “within the purview of ethnomedical studies” (Erickson 2008, 4). Mark Nichter (1992) notes, “Ethnomedicine is commonly associated with the ethnography of health and curative healing behavior of the ‘Other,’ despite the fact that biomedicine is considered a form of ethnomedicine with multiple variants” (xvii).8 Rather than juxtaposing Western biomedicine, which emphasizes science and technology in healing, and ethnomedicine, there has been agreement among most anthropologists in the more recent decades that biomedicine is a form of ethnomedicine. As such, biomedicine must be deconstructed and critically analyzed instead of just being accepted as it is (Hahn and Kleinman 1983). “Biomedicine”—​the concept or term—​does include a wide variety of variations and a diverse array of treatment practices; however, its defining characteristic is that it uses scientific knowledge and technology to diagnose and treat, such as medication and surgery.9 Biomedicine and its variations can be found around the world and its growth mimics that of Western political and economic expansion. Often, it has come to be associated with notions of “progress,” “development,” and “modernity.” Lock and Nguyen (2010) recall how scholars in the nineteenth century “explicitly associated developments in science and technology with progress and the advancement of human kind” (19). Similar to other health care systems found around the world, the practice and epistemology of biomedicine is reflective of a system of knowledge that is rooted in the West. Biomedicine is influenced by ideas from the European Enlightenment: A good number of truth-​claims put forward during the Enlightenment, including those of Newton, are still with us today, and have a profound effect on the way in which science is conducted and biomedical technologies of all kinds are put into practice. (Lock and Nguyen 2010, 20)

38 Approaches During the Enlightenment, there was a focus on “machine power” and “the belief that mastery of the natural world could be achieved through scientific investigation” (Lock and Nguyen 2010, 19). At the very beginnings of the Enlightenment—​the time period most often associated with the seventeenth to nineteenth century in Europe and also called the Age of Reason—​Leonardo da Vinci detailed the sinuses in “Two Views of the Skull” in 1489.10 Several theories have been developed on the importance of sinuses in humans, but in reality, their function and purpose have not been clearly defined (Williams 1995). This was a time of scientific and medical discoveries. The exact time period of the Enlightenment is not as important as the thinking and ideas that came out of it: “is not an historical period, but a process of social, psychological or spiritual development, unbound to time or place.”11 The values of rationality and individualism from the Enlightenment in particular shaped biomedicine as we know it today. In the United States, we can especially see this in the discussions about the importance of patient autonomy and choice and in the use of scientific (tangible) evidence gathered through blood tests and physical exams to diagnose. In anthropology, we hear examples particularly from minority groups, low-​income communities, individuals who are stigmatized in a society, and those who have experienced trauma, among others, about pain or aches that cannot be traced to a specific cause; this does not mean that the pain does not exist (see Buchbinder 2015), but it may stem from their environment and circumstances—​as well as larger structural issues in society (Holmes 2013)—​rather than one underlying or pre-​existing physical problem.12 Values of the Enlightenment upon which biomedicine is built are not universal; they are culturally specific. Anthropologists have critiqued these ideas through ethnographic fieldwork in medical institutions and with patients, families, and caregivers. For instance, Mara Buchbinder (2018) looks at Vermont’s 2013  “Patient Choice and Control at End of Life” Act. While the act and public discourse about medical aid-​in-​dying (AID) advocate for patients controlling their own deaths, or what we often hear as “death with dignity,” Buchbinder shows “how AID can provide unexpected opportunities to reinvigorate social ties and dependences in ways that depart from advocacy discourses on both sides of the debate” (483). She demonstrates that contrary to the act’s purpose and broader discussions about autonomy in death in the United States, the “medico-​legal protocol” actually “requires them to affirm and strengthen other bureaucratic, material, and affective forms” (Buchbinder 2018, 483) of dependency. In Mexico, Emily Wentzell (2017) discovered that male participants enrolled in the Human Papillomavirus in Men (HIM) study do not see themselves as individuals nor do they view their choice to participate as solely for their own benefit, even though that is how participants are frequently talked about in clinical trials:  “While medical research ethics guidelines frame participants as individual and autonomous, anthropologists emphasize the relational nature of health research participation” (115). She highlights that biomedical research “decontextualizes the

Dying within the US health care system  39 bodies from which data are gathered” (2017, 116), but it is necessary to consider how their choice to participate in a study is situated within their social and familial networks. Both Buchbinder and Wentzell demonstrate how biomedicine emphasizes the individual human body as the center of treatment, which may be traced to the Enlightenment. They also show that this framing often misses the important social and cultural contexts in which bodies live, and die. The scientific discoveries and thinking during the Enlightenment have had long-​lasting impacts on health around the world, as we must also consider Western imperialism and colonialism during this time: “Geographic exploration, urban development and imperial expansion created new patters. Epidemic diseases of isolated communities became endemic in urban environments” (Porter 1999, 45). Dorothy Porter writes of shifting disease patterns and concerns, “The absence of catastrophic disasters meant that emergency disease control was no longer a priority. Instead, the Age of Enlightenment became a period in which a new interest in the social scientific analysis of the health of populations developed” (Fox et al. 1995 cited in 1999, 45). The use of statistics restructured population health, as “new analytical languages facilitated the professionalization of disease prevention” (Porter 1999, 61). In his Society Must be Defended lectures (1975–​76), Michel Foucault (2003) noted that with the development of statistics, we are no longer individuals, but rather become part of a population that must be managed by the state. Births and deaths are tracked. These numbers become the basis of regulatory means, such as health programs or initiatives; policies regarding gender, sexuality, and reproduction; or other mechanisms, such as insurance and urban planning. Susan Greenhalgh (2015) extends Foucault’s argument about population health to a contemporary context in her analysis of how weight and obesity have become a concern of not just individuals themselves in the United States, but of broader communities and the federal government as well. Numbers remain a crucial part of health care in the United States. Jessica Newman (2019), in writing about single motherhood and abortion in Morocco, notes that numbers have a great deal of power when it comes to health policy and programs. In the United States, we can see how numbers are also linked to reimbursements, insurance coverage, and allocation of state and federal funds to hospitals and other medical facilitates.

Following the numbers and making decisions about patients’ care The Chair of the Ethics Committee of the hospital attended one of the care team meetings that I observed to discuss a particular Muslim patient case. The conclusion was that the committee could provide another voice at the table, but they could not dictate what the family should do concerning the patient. He stated that the committee would actually defer to the providers who were caring for the patient for guidance. What struck me about this discussion was the bureaucratic part of ethics that members of the care team raised with the

40 Approaches committee chair. One physician said that hospitalists (physicians employed by the hospital as compared to those who may be in private practice but have hospital privileges) will often say that case managers really run the show and that their ethics and decisions are constrained by economics and regulations. He stated hospitalists are evaluated based on patients’ length of stay in the hospital and sometimes their “quality bonuses” are also linked to this; the shorter the length of stays, the larger the payment, so they do not want patients to stay at the hospital too long. This can influence the decisions they make in terms of the care they provide especially if the case manager is pushing for them to transfer or discharge the patient. What this boils down to is that patients may not get the best care possible, and this was a real concern for the team who are often charged with caring for the very sick and dying patients. I was really taken by this exchange because it pointed to how much decision-​making by physicians and providers is really based upon numbers. The medical director raised the question of whether or not this is something that physicians and providers must carry: Should they be thinking about length of stay and re-​ admission when making the best and most ethical decisions possible for their patients? The team and the ethics chair did not find an answer to this question at the meeting that day. In looking back at my fieldnotes, one of the first things I noted for each patient that was discussed at the care team meeting was length of stay. The issue of length of stay, which was documented in the updated patient lists that the care team received every morning, came up again shortly after the meeting with the ethics chair when the care team discussed trying to find a space in a long-​term care facility for a patient. Many times, the team has trouble finding a bed in an in-​patient facility, such as long-​term nursing facility or hospice, and the patient must stay in the hospital longer than expected, which can influence payments to providers. Attending physicians sometimes did not want to discharge patients for fear that they would quickly return to the hospital and be readmitted, which is also tracked by the hospital as each patient was given a “re-​admission score,” which translates to the likelihood that they would come back to the hospital after discharge. The hospital has set up outpatient care and other programs to try to prevent this from happening as in-​patient care in the ICU as well as care in the Emergency Department is very costly. The medical director noted for one patient that they could have the family sign a “do not transport” order at the facility so that the patient would not be transported back to the hospital unless absolutely necessary. US hospitals, including the one where I conducted fieldwork, track performance in a number of areas, such as, hospital acquired conditions, unintended readmissions, and patient satisfaction, which are measured against data collected in previous years and compared to external benchmarks. Hospitals, and health care more generally, have become central to what scholars have termed “audit culture” (Strathern 2000). Audit culture emphasizes accountability and the demonstration of “best practices.” Cris Shore and Susan Wright (2015) write, “The use of indicators, measurements, and rankings

Dying within the US health care system  41 have become increasingly pervasive, both as instruments in the internal management of organizations and in the external representations of their quality, efficiency, and accountability to the wider public” (421). Furthermore, Shore and Wright examine, “how the principles and technologies of grading and ranking have traveled from education to the military and industry and, despite appalling failures, have further been translated into the public sector during the 1980s and beyond” (Shore and Wright 2015, 421). We see “grading and ranking” in health care. Physicians are recognized as “Top Doctors” by local and national organizations. Hospitals are nationally ranked based on specialties and procedures/​conditions by US News & World Report.13 There are “potential contribution[s]‌of evaluation data to the improvement of agency services.” However, “the results of evaluation are often used to demonstrate fiscal prudence, efficiency, and accountability to funders and the public, rather than to produce information for the organization’s benefit” (Owczarzak, Broaddus, and Pinkerton 2016, 326). During my fieldwork, I  observed that this contradiction held true and proved to be a daily struggle for many of the care team members, as the push to meet particular benchmarks and standards caused them to question their ethics and whether they were providing the best care possible for their patients. As I  attended the care team meetings, I  was sometimes shocked at how many of the roadblocks the providers encountered in their daily rounds were actually caused by the hospital itself or the broader US health care system. Providers often talked about payment and delaying the transfer of patients. I told the medical director that I learned—​as an outsider and someone who studies health care—​how the regulations intended to produce higher quality care are actually compromising patients’ care. The medical director agreed. I think her exact word was “Amen.” She explained that her metrics as a provider and even her income are linked to measures like patient satisfaction, which is highly subjective.14 This can actually compromise the actual process of care. This took me back to when I was a postdoc and doing research in Appalachia at the small hospital. I often spoke with one of the physicians, who worked for the health care organization that owned the hospital but was not a hospitalist per se, as he was technically a family physician at one of the organization’s practices but did rounds at the hospital. He told me that he would do everything he could to save a patient if the patient did not have an advance directive in place that told him not to because he did not want someone coming back saying, “You killed my grandma!” First of all, this could result in him being sued by the patient’s family, and second, it could also compromise his reputation as a health care provider in the tight-​knit community, thus jeopardizing his patient satisfaction scores. The medical director of the care team explained that it used to be that physicians dictated care based upon the evidence, their training, and ethical considerations, but now, hospitals are “buying” physicians, meaning they play “big brother.” This makes it difficult for providers to freely decide what should be done for their patients. Even though it is important to have patients engaged in their own

42 Approaches care, and research has shown that patient-​centered care can improve health-​ outcomes (e.g., Flach et  al. 2004, Stewart et  al. 2000), I  think the medical director meant that the regulations and policies put in place by the hospital, government, insurance companies, and other external agencies that she must follow do not always allow for her to explore all options and choices with her patients or sometimes cause her to make medical decisions that she may not have if she was not so constrained by overhead factors. I remember walking out of our meeting feeling extremely disheartened by the fact that care is so often directed by profits, payments, policies, and benchmarks—​which can be linked to the capitalist system of health care we have in the United States, as documented by Scheper-​Hughes (2009)—​rather than by the best judgements of the health care providers and their engagements with their patients.

End-​of-​life care in the United States Dr. Bashara is part of a private group of physicians who cater to two hospitals, have an office practice, and go to three nursing homes in the region. At the hospital, he cares for patients who are admitted. He serves as their primary physician while at the hospital and once they are discharged they will return to their own primary care practices. Dr. Bashara, who identifies as Muslim, and I met in the physician lounge one day at the hospital for coffee. He said in our conversation, “It’s much more challenging discussing end of life care I feel with Muslim patients or those who may be practicing Muslims but are from a non-​Western country.” He continued, It’s not a surprise to me that I am often the first one discussing end-​of-​ life care because it’s never been brought up for some reason or the other. I  wouldn’t say it’s resistance, but it’s kind of unease at the mention of what we think is inevitably going to happen soon. Dr. Mir also identifies as Muslim and was born and raised in a Muslim majority country. He moved abroad to attend medical school and then came to the United States to complete his residency and fellowship. He is a hospitalist. He told me, One of the things that I see, I cannot give a percentage, but the majority of Muslim patients don’t have an advance directive. They don’t, but it all depends on the level of education, how open they are, etc. Stuff like that. They cannot decide on this. So, to be honest with you, I have yet to meet one Muslim patient that has an advanced directive [already in place when they get to the hospital]. When I asked why he thought this was, he explained that advance directives are sometimes seen as “giving up,” but this is not just unique to Muslim patients. However, Dr. Mir said from his practice as an attending physician, he

Dying within the US health care system  43 sees Muslim patients as “wanting to have hope, they want to say, ‘God is great, something’s going to happen, he’s going to turn things around, he’s going to make things better.’ ” They then do not want to have a DNR or an advance directive and do not want to discuss palliative care or hospice. He appeared to be accepting of his patients’ beliefs, but at the same time, seemed a little skeptical. His words reminded me of a Muslim patient case that I observed. A Muslim man in his late-​40s was found in his apartment covered in filth and could no longer take care of himself because of his advanced state of disease. He was admitted to the hospital, but his sister (his closest kin) became extremely angry with the care team when it was suggested that he be DNR. He did not have an advance directive upon admission. She insisted that he would be Full Code. Dr. Mir raised the important point that there are various interpretations of Islam, though. Dr.  Patel, like Dr.  Mir, identifies as Muslim and was born in a Muslim-​ majority country before his family moved to Europe. He attended medical school in his birth-​country and then moved to the United States to complete his residency and fellowship. Dr. Patel mentioned, “The Ismailis actually welcome their death as a transition into a more pleasant afterlife.” Joel Ibrahim Kreps (2009) writes, the Ismaili sect “is a breakaway sect of Shia Islam with its own set of beliefs and practices … Ismailis’ beliefs are complex and syncretic” (70). In his career, as well as his own personal life, Dr. Patel has found that Ismailis are more accepting than other Muslim patients of death: You know, because they’ve done things to the best of their knowledge and their intent has been clean and [death] is just a transition to a better place. For the most part, every Ismaili that I have taken care of has never shied away from saying, you know, ‘I’m terminally ill, it’s OK, it’s time for me to go. People come to their own understandings based upon the guidance they receive from religious leaders as well as their individual circumstances. Dr. Bashara, Dr. Mir, and Dr. Patel talked about issues they have encountered while caring specifically for Muslim patients who are dying, as well as some of the issues more generally that have come out of Muslim patient cases and those of other faiths, too. In the next chapter, I will talk more specifically about Islam and end-​of-​ life care in the United States, but in the remaining sections of this chapter, I want to discuss some of the general characteristics of the model for end-​ of-​life care within the US health care system, and what I  witnessed at the hospital where I  conducted fieldwork. End-​of-​life care in the United States has been described as being based on the use of technology and on an ideology of “rescue,” where death is seen as an unfortunate failure (Chapple 2010). Yet, the system attempts to move patients along as quickly as it possibly can to increase efficiency, and because of the capitalist nature of the system, to conserve spending and to increase profits. Helen Chapple (2010)

44 Approaches reminds us, “The move toward standardizing care for all patients has deep roots. Near the beginning of the twentieth century, hospitals in the United States insisted that all patients have standardized medical records” (25), but this did not mean that all patients were treated equally, with more wealthy and White patients having more documentation than those from minority groups or lower classes. Chapple suggests that “quality improvement efforts” and “evidence-​based medicine” developed out of the belief that care should be standardized: “Clinicians proclaim their belief that practice should be guided by what is best for the patient, therefore general standards should be modifiable based on individual cases” (2010, 25–​26). However, as the medical director expressed to me in her office, the bureaucracy of the health care system and the polices, guidelines, and measures in place, can restrict the amount of flexibility in care. Chapple observes that the success of hospitals is partly measured by mortality rates—​the lower the better—​which means “more time alive is their most valued commodity” (2010, 26). Kaufman (2005) highlights in her seminal ethnography …And a Time to Die: How American Hospitals Shape the End of Life that “patients and families, when faced with health crises and the surrounding plethora of medical options do not know what to want, other than recovery or to end suffering in a general sense” (34). Health Services Research has established that as the end-​of-​life approaches, patients and their families are generally unaware of their options, which leaves health care providers unsure of their wishes for care (e.g., Salmond and David 2005; Wennberg et al. 2004). I also want to be careful here and reiterate that not everyone in the United States has equal access to particular health services and options due to their economic circumstances as well as other factors. For instance, Seth Holmes (2016) found that undocumented Triqui migrant workers, originally from Oaxaca, Mexico, who work picking berries on farms in Washington state, often have chronic and debilitating pain due to their strenuous work on the farm or past traumatic experiences in Mexico, but they fear being deported, which means they do not always seek the medical attention that they need. Similarly, Lamb (2019) suggests that “successful” aging, or not growing old, is a “moral project” for many older adults in North America; however, social inequalities and economic disparities influence the ways that people age, and those who do not identify with the “socioeconomic elite” do not always have access to the resources needed to age “successfully.” With an overabundance of medical options, many illnesses, such as heart disease, cancer, and respiratory diseases, can be managed to increase the length of patients’ lives, as well as the quality. Quality is a subjective term and does not have the same meaning for everyone, but sometimes, even with medical interventions, it is not possible to improve the quality of a patient’s life due to their advanced state of disease, which has led to their organs no longer functioning as they should. Because of the numerous treatment options that many of us have available in the United States, people are often kept alive much longer than would be expected with the natural course of the disease.

Dying within the US health care system  45 The SUPPORT study (1995) looked at many aspects of the quality of dying in the United States. Results suggested that there is a need for much improvement in end-​of-​life care, specifically concerning pain and symptom management (Connors et al. 1995; Donnelly 1996). Research prior to, and even after, the SUPPORT study had mixed results when it came to the use of advance directives because if patients’ wishes are not crystal clear, they must be interpreted by providers and family members. Advance directives may not always have a direct impact on the care that is really delivered (see Teno et al. 1994). The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT) first looked at the communication between patients and providers and at how aggressive treatments were used. Then its second part was a two-​year controlled trial in which 4,804 patients were randomized into a control group or intervention group, with the latter including a nurse meeting with patients, their families, and their providers to facilitate a conversation about end-​of-​life care. The study found that the intervention did not improve any of the outcomes that were being measured: communication about CPR, number of days in the ICU, and when DNRs were set up. One of the reasons why this intervention may not have been as successful as hoped is that physicians had discussions with patients too late. They were having end-​ of-​life discussions when they were actually nearing their deaths, rather than prior to this when they could have laid out all of the options and their benefits or disadvantages. Even though the SUPPORT study took place 25 years ago, some of the issues that it tried to address in order to improve end-​of-​life care still have not been completely resolved. When I  was a postdoc, one of the research projects I was assigned to was trying to find the best ways to integrate end-​of-​ life discussions into primary care in rural Appalachia. Given it was an aging community, with the younger generations moving away due to a lack of jobs in the local area, this was of the utmost importance. The social workers at the local rural hospital estimated that less than 40 percent of patients who come into the hospital and are very sick have an advance directive already in place. Our research team tried to figure out how to leverage other providers and staff in the family practices, besides the physicians, and community resources, including churches, so end-​of-​life discussions can happen earlier. As part of the ACA, President Obama implemented a policy in 2010 that would allow physicians to be reimbursed by Medicare for end-​of-​life discussions with their patients. Payment was one reason why the family physician in Appalachia I often worked with expressed his reluctance to discuss the end-​of-​life with his older patients, even though he knew he should be doing so. He said that he already had to see 30 patients in one day to make enough money to keep his practice afloat, or as he put it, “to keep the lights on.” This means that he had to keep to the typical 15-​minute appointment window for each patient, which allowed him little time to talk about anything else with them besides why they specifically came to see him that day.15 President Obama’s policy was celebrated by many in the health care community, who said it was long overdue. This

46 Approaches policy came shortly after public uproar in 2009, while the ACA was still being developed, over so-​called “death panels,” a term that was coined by 2008 US Vice Presidential nominee Sarah Palin (the former governor of Alaska). Palin stated that these “death panels,” made up of officials who make “subjective judgement of [someone’s] ‘level of productivity in society,’ ” would influence care at the end-​of-​life that a particular patient receives.16 The turmoil over the “death panels,” which President Obama denied would ever exist under the ACA, caused payment for end-​of-​life discussions to be removed from the proposed legislation. But, in 2011, the Obama administration was able to enact the new reimbursement rule, which allows for advance care planning to be part of a yearly visit to the doctor under Medicare. The administration turned to academic research (e.g., Fischer, Min, and Junter 2010) that highlighted discussions about end-​of-​life care between patients and physicians ensured that patients’ desires are documented and honored when it comes to death, which can enhance patient autonomy and independence—​two core values from the Enlightenment that continue to shape health care even today. Overwhelmingly, Americans have expressed that they would prefer to die at home as compared to in a hospital or another medical facility. Some sources state that as many as 80 percent of Americans wish to die in their homes.17 Studies have shown that for a number of years, the hospital was the most common place for people to die in the United States. For example, in 2000, about 50 percent of deaths in the United States occurred in the hospital, about 25 percent occurred in the home, and about 25 percent occurred in hospice, nursing homes, and other facilities.18 Conversely, the number of deaths that happen at the home has been steadily increasing over the past few decades, while the number of deaths in a hospital has been decreasing: “For the first time since the early 1900s, more Americans are dying at home rather than in hospitals, a trend that reflects more hospice care and progress toward the kind of end that most people say they want.”19 Hospital admissions have increased about 11 percent, but even with this, the number of deaths in hospitals has declined:  “Some of the most dramatic reductions in hospital deaths were among people with kidney disease and cancer.”20 Even though home deaths have increased, still, in the United States about 700,000 people die in hospitals every year.21 The question remains as to why so many people continue to die in US hospitals when the vast majority of the American population wants to die at home, outside of a medical setting. One proposed answer is because of the medical care that is available: “Studies suggest that more aggressive, inpatient medical care tends to be offered in places where there are more specialists and more hospitals.”22 However, there has been a push in the United States for patients to utilize more outpatient services, which are less costly than acute inpatient care. In response to COVID-​19, the novel coronavirus that originated in Wuhan, China, in 2019 and has infected millions of people globally,23 countries and states instituted quarantines and restrictive measures to ensure “social distancing,” or keeping people physically away from each other,

Dying within the US health care system  47 in order to try to slow its spread and not overburden health care systems. The response to the coronavirus has shown how “the limits of America’s hospital system are an unexpected downside of progress in efficiency.” Moreover, advances in technology and pharmaceutical breakthroughs that have made it easier to keep patients out of the hospitals. Insurers have accelerated the trend by steering patients to less-​costly care, pushing for more procedures to be done on an outpatient basis, often outside of hospital walls.24 Equally, we must also look at the care that takes place in the weeks or months that lead up to death, because place of death is just one piece of the puzzle. The Centers for Medicare and Medicaid Services (CMS) estimate that about one-​quarter of annual Medicare spending is on the 5 percent of beneficiaries that die.25 It is possible that aggressive treatment is used, but then stopped a relatively short time before death occurs, or the patient could be treated in a hospital, but then transferred to either an in-​patient or home hospice (or a nursing home) just before they die. While the home is a place where a dying person can be surrounded by loved ones and potentially have the chance to say good-​bye to family and friends, anthropologists have shown that it can also be a place of uncertainty. Jason Danely (2019) works on aging and death in Japan, a country notable for its fast-​growing older population. Japan’s insurance system encourages community-​based care of elders, but given increased burdens placed on the younger generations due to Japan’s place in the world economy and politics, there has been a breakdown of intergenerational and neighborhood ties, which can lead to a lack of care for elders. So, while the government encourages the home and community to be places for elder care, “the home has become an intensified space of care as well as a potential zone of abandonment” (Danely 2019, 234). Danely explores the circumstances surrounding “the unwitnessed death,” or dying alone, which is becoming more common among Japan’s elderly due to national and global forces. On several occasions in the care team meetings, I  noted that the health care providers talked about families who wanted their loved ones to remain in the hospital even though further treatment would not improve their condition. The providers suggested that patients be transferred to outside facilities, such as a skilled nursing facility (SNF), or into home care, but families were fearful, they felt safer having the patients remain in the hospital because of the staff and the treatment options that are available around the clock. Everyone in these meetings acknowledged that death is unpredictable. Many of the patients, who were conscious and able to communicate with the staff, were also being treated for anxiety. One patient in particular, an 87-​year-​old man whose body was physically failing due to natural causes, was more fearful of the pain potentially associated with dying. He was jumpy and did not want to go home; the providers decided to place him on medication for anxiety to help calm him. Being in the hospital

48 Approaches gave families and even some patients, who were able to speak for themselves, comfort and a sense of control over the process because they had access to trained staff and resources to ease suffering that they believed the physical process of dying may bring.

Paying for end-​of-​life care: Religious debates relating to care in the United States In this chapter, I have focused on the specificities of the US health care system and have outlined some of its general approaches to end-​of-​life care. I have tried to highlight how values of the Enlightenment continue to influence health care as well as how neoliberalism and capitalism shape the delivery of services. The next chapter will detail Islamic approaches to death and dying in the United States and some of the prominent religious principles and practices that came out of my research. I will analyze how these approaches and tenets intersect with what I have discussed in this chapter concerning the US health care system. For example, health insurance was a common topic of discussion at the hospital, as certain private insurances will cover particular types of services while others would not. Furthermore, the hospital and the employed providers participated in particular insurance plans, meaning they were considered “in-​network.” If they did not participate in a specific insurance plan, then they were considered “out-​of-​network,” which may lead to much higher costs or a denial of their claim. In Islam, there is a debate about health insurance, and insurance more generally, as many religious leaders argue that it is haram. The key to this debate is gharar, an Arabic word that refers to risk or uncertainty. When you have private insurance like plans that are provided through employers in the United States in which the employer will cover part of the cost and a portion of your salary will cover the rest, you are paying into something in which the benefit is not known, which is forbidden in Islam: From Hakim b. Hizam … I asked the Messenger of God (Peace be upon him), “If a man should come to me and ask me to sell him something that I do not have, may I purchase it later and then deliver it to him?” … He replied, “Do not sell that which you do not have.” (Muhammad Abd al-​Rahman al-​Mubarakflri cited in Speight 2000, 266). In general, someone does not wish to fall ill and have to use their insurance to cover the costs of their medical care. The “speculative nature” of health insurance is also prohibited. Nicholas Dau-​Schmidt (2012) observes that Islamic law mandates that a delivery date be specified makes it clear that forward contracts under Islamic law were never intended to be of

Dying within the US health care system  49 a purely speculative nature. The ability of speculators to turn a profit depends upon the aleatory nature of their contracts, and upon the ease of buying and selling these contracts quickly, without possessing the actual goods, to turn a profit. (550) Dr.  Main Khalid Al-​Qudah from the Assembly of Muslim Jurists of America issued a fatwa in 2010 when asked this question, I have read medical insurance is not halal for Muslims (USA) to use but what if [my disease] is a chronic medical condition that needs expenses that I cannot afford. [How] do I go about that? I use it only when needed and try not to use more then [sic] what I need but medical supplies and medicine is very expensive and I  fear I  am doing something haram by using medical insurance or is it valid …? Dr. Al-​Qudah responded, Having private health insurance for Muslims in the US is allowed as a sort of dispensation due to the very high and unaffordable expenses of medical treatment for many people. Obviously, having Medicaid and Medicare are basically allowed as they are federal programs and not classified as commercial/​private insurance.26 Even though the general premise of insurance is forbidden, given the high costs of care particularly in places like the United States, this fatwa states that insurance is allowed because medical care may place additional financial burdens on patients and families. Insurance was a topic of discussion for the 2001 session of the Majma al-​Fiqh al-​Islami (The Fiqh Academy) of the Organization of the Islamic Conference (OIC), “the most widely cited jurisprudential council.”27 Dr. Hatem al-Haj (2011) summarizes the discussion, They all seem to agree that health care is a “necessity of life.” However, with the exception of one author, they did not discuss in detail the question of resorting to health insurance as a type of necessity or in a manner that is most relevant to the situation in the West or the United States. Some of the authors … only considered health insurance as a form of governmental or social insurance, which is true for the majority of the countries of the world but not for the United States. The one exception to that tone was the paper by al-​Qaadhi Mujaahid al-​Islaam al-​Qaasimi of India, a non-​Muslim country, who, as noted above, argued that health insurance is a necessity for Muslim Americans … However, once again, saying that such a state is one of necessity does not mean that one simply goes out and gets any type of medical insurance available. The principle of necessity requires that one minimize the normally forbidden act to

50 Approaches the best of one’s ability. Hence, many Muslims would be facing different possible scenarios in the United States concerning their need to indulge in health insurance and it is incumbent upon them to determine which is best from an Islamic perspective.28 al-Haj’s summary of the council’s discussion about health insurance points to the peculiarities of insurance and access to health care in the United States. al-Haj notes the council did not come to a conclusion, but rather, Muslim Americans must do what is best for them and their families and use their religious understandings to guide their selection and use of health insurance, although not all employers, for instance, offer a variety of plans. It is these types of interactions between religious principles and the US health care system that I will explore further in the next chapter.

Notes 1 For more on laws and regulations concerning resuscitation and treatment in the Gulf states see Tithecott, Andrea. 2017. “The Treatment of Patients at End of Life Stage:  A GCC Overview,” Al Tamimi & Co., November. Accessed February 27, 2020, www.tamimi.com/​law-​update-​articles/​treatment-​patients-​end-​life-​stage-​gcc-​ overview/​. 2 “Health services research is a multidisciplinary field of inquiry, both basic and applied, that examines access to, and the use, costs, quality, delivery, organization, financing, and outcomes of health care services to produce new knowledge about the structure, processes, and effects of health services for individuals and populations” (Institute of Medicine. 1994. Health Services Research:  Opportunities for an Expanding Field of Inquiry—​ An Interim Statement. Washington, DC:  The National Academies Press. https://​doi.org/​10.17226/​9242.) 3 Sack, Kevin. 2007. “In Hospice Care, Longer Lives Mean Money Lost.” New York Times, November 27. Accessed July 27, 2020. www.nytimes.com/​2007/​11/​27/​us/​ 27hospice.html. 4 American College of Physicians. “What is the Patient-​Centered Medical Home?” www.acponline.org/​practice-​resources/​business-​resources/​payment/​delivery-​and-​ payment-​models/​patient-​centered-​medical-​home/​understanding-​the-​patient-​ centered-​medical-​home/​what-​is-​the-​patient-​centered-​medical-​home 5 This was in contrast to what I  had witnessed at another health care organization where I  conducted fieldwork as a postdoc at Virginia Tech. The rural hospital where I  conducted interviews and observations allowed their beds to be transitioned to hospice beds for a period of time and nurses from an outside hospice organization would tend to the patients. However, I  witnessed miscommunication about patients because the hospital and hospice did not share medical records. In one instance, the hospice nurse knew the patient wanted to return home and her power-​of-​attorney, her daughter, who was living in another state, agreed. Her son, on the other hand, who the patient lived with, did not want her to return home because it had become too difficult to care for her. The physician at the hospital, not having access to this information, which had been gathered

Dying within the US health care system  51 and documented by the hospice nurse, came into the room and said to the patient, “We are going to find a new home for you today,” meaning a nursing home. The patient had a breakdown and became extremely angry, stating over and over again that she was going home. The physician left the room somewhat confused and only then did the nurse and physician share information about this patient and what her decision-​maker had officially decided. 6 A Charge Nurse is a Registered Nurse (RN) who is “in charge” of a floor or ward in the hospital during their shift. They see patients but also are supervisors. 7 The Durable Do Not Resuscitate Order from the Virginia Department of Health requires that a physician signs off and certifies, “I hereby direct any and all qualified health care personnel, commencing on the effective date noted above, to withhold cardiopulmonary resuscitation … from the patient in the event of the patient’s cardiac or respiratory arrest. I  further direct such personnel to provide the patient other medical interventions, such as intravenous fluids, oxygen, or other therapies deemed necessary to provide comfort care or alleviate pain.” 8 See Nichter 1992 for more on why some anthropologists do not completely agree with classifying ethnomedicine as a sub-​field of medical anthropology. 9 Anthropologists have also looked at science and biomedicine outside of the Western context. For example, see Hughes Rinker (2013a) for a discussion of Morocco, Greenhalgh (2008) for a discussion China, and Attewell (2016) for a discussion of India. 10 1983. Leonardo Da Vinci: Anatomical Drawings from the Royal Library. New York:  The Metropolitan Museum of Art. 11 Bristow, William. 2017. “Enlightenment.” The Stanford Encyclopedia of Philosophy, edited by N.  Zalta. August 29. Accessed November 4, 2020, plato. stanford.edu/entries/enlightenment/​. 12 For an example from Nicaragua see Raleigh, Lisa. 2013. “Stress Test: How Culture Influences Illness,” Cascade, June 23. Accessed March 5, 2020, cascade.uoregon. edu/​spring2013/​expert/​expert-​article/​. 13 US News & World Report. “Best Hospitals by Specialty National Rankings.” Accessed March 10, 2020, health.usnews.com/​best-​hospitals/​rankings. 14 I have noticed that I frequently receive a survey via text message or email after a doctor’s appointment asking me to take a survey that rates everything from the helpfulness of the front office staff to the cleanliness of the exam room to the actual services and care I received. The health care organization that runs the hospital where I conducted research will include patient satisfaction scores and sometimes comments from patients for their providers on their website. 15 For an excellent discussion of the challenges to the 15-​minute appointment, particularly among patients challenged by economic and social disparities, see Fiscella, Kevin and Ronald M. Epstein. 2008. “So Much to Do, So Little Time: Care for the Socially Disadvantaged and the 15-​Minute Visit.” Archives of Internal Medicine, 168(17):1843–​1852. 16 Don Gonyea. 2017. “From the Start, Obama Struggled with Fallout from a Kind of Fake News.” NPR, January 10, Accessed July 20, 2020, www.npr.org/​ 2017/​01/​10/​509164679/​from-​the-​start-​obama-​struggled-​with-​fallout-​from-​a-​kind-​ of-​fake-​news.

52 Approaches 17 “Where do Americans Die?” Stanford School of Medicine, Accessed March 15, 2020,  https://​palliative.stanford.edu/​home-​hospice-​home-​care-​of-​the-​dying-​ patient/​where-​do-​americans-​die/​. 18 Centers for Disease Control and Prevention. 2016. “QuickStats:  Percentage Distribution of Deaths, by Place of Death—​United States, 2000–​2014,” Morbidity and Mortality Weekly Report, April 8.  Accessed March 15, 2020, www.cdc.gov/​ mmwr/​volumes/​65/​wr/​mm6513a6.htm. 19 Marchione, Marilynn. 2019. “More Americans Are Dying at Home Rather than in Hospital.” AP News. December 11. Accessed July 27, 2020, apnews.com/​93d7f 8a626f8046b0194d35bffdcadf2. 20 Shmerling, Robert H. 2018. “Where People Die.” Harvard Medical Blog, October 31. Accessed March 15, 2020, www.health.harvard.edu/​blog/​where-​people-​die-​ 2018103115278. 21 Ibid. 22 Ibid. 23 This is as of July 2020 using data from Johns Hopkins University. 24 Evans, Melanie and Anna Wilde. 2020. “U.S. Hospitals Face Major Challenges as Coronavirus Spreads.” Wall Street Journal, March 12. Accessed March 15, 2020, www.wsj.com/​articles/​u-​s-​hospitals-​face-​major-​challenges-​as-​coronavirus-​ spreads-​11584056336. 25 Adamopoulos, Helen. 2013. “The Cost and Quality Conundrum of American End-​of-​Life Care.” The Medicare News Group. June 3. 26 Assembly of Muslim Jurists of America. 2010. “Medical Insurance:  Fatwa ID 82157.” August 13. Accessed July 20, 2020, www.amjaonline.org/​fatwa/​en/​82157/​ medical-​insurance. 27 El-Gamal, Mahmoud A. 2003 ‘ “Interest’ and the Paradox of Contemporary Islamic Law and Finance.” Accessed July 20, 2020, www.ruf.rice.edu/​~elgamal/​ files/​interest.pdf. 28 Al-haj, Hatem. 2011. “The Question of Insurance –​Part II.” July 13. Accessed July 20, 2020, www.amjaonline.org/​the-​question-​of-​insurance-​part-​ii/​.

2  Islam and end-​of-​life care Prevalent approaches and beliefs

Some researchers and policy experts have blamed the high costs of health care in the United States on the structure of the health care system given that it is siloed, bureaucratic, and difficult to navigate for many patients. A bioethicist that I  spoke with about his work at a university hospital in the DC region stated “we have such a fractured health care system,” in which practices and policies do not always align. He continued to express his frustration by talking about how decisions regarding care are made: “Public policy says you cannot inhibit people’s choices, unless their choices are adding expense to the health care system.” I sat with Dr. Fudadin in his office at another teaching hospital. He has been instrumental in local and national initiatives that help teach medical professionals and the public about the need for culturally competent health care. Dr. Fudadin and I discussed how treatments and practices fall into different categories of human action within Islamic law: “In most schools of Islamic law, human actions fall under five categories: obligatory; recommended; permissible; reprehensible; and prohibited” (Ahmad 2017, 69).1 In the course of our conversation, I asked him how he sees the relationship between the US health care system and the main principles of Islam. He said, “The way the establishment recommends that medicine should be practiced is no different from the way Islam recommends it should be practiced. There is no difference.” He continued, “[Now] in terms of what is actually being done though, either Muslims or non-​Muslims, there is an over-​usage of technology and that is against Islamic teachings. It’s wasteful spending.” Dr. Fudadin later stated, I don’t know if you’ve heard of the statement from the Prophet or the hadith: that even if you were in the middle of an ocean, you should not waste a drop of water. So that’s one statement where the well-​being of a community takes precedence over the well-​being of an individual. What struck me about my discussion with Dr. Fudadin that day, which also reminded me of my earlier conversation with the bioethicist, was how much of what he said in terms of resources and care at the end-​of-​life in Islam fell in line with many of the more recent policies and initiatives within the US health

54 Approaches care system that try to bring costs down while improving the quality of care and patient satisfaction. One common belief that was expressed in many of my interviews with religious leaders, Muslim physicians, and scholars was that God created every disease and he creates every cure. The Prophet said, “Seek treatment, for every illness God created a treatment” (Dawood 1999 cited in Ankeny et al. 2005). It is God who decides when death will occur. Mohammed Ali Al-​Bar and Hassan Chamsi-​Pasha (2015) write, Muslims believe that death is the departure of the soul from the body by divine decree. Death marks the transition from one state of existence to the next and the beginning of the journey in the life hereafter, which is perpetual and infinite. (243) The Qur’an reads, “It is He Who gives Life and Death; and when He decides upon an affair, He says to it, ‘Be,’ and it is” (40:68). For Muslims, as for many people, life is sacred. This belief was also found in a study among Moroccan immigrants in Belgium. Stef Van den Branden and Bert Broeckaert (2008) write, The vision of God as the sole determiner of the life span and the physician as the person who must try to cure the patient, or at least alleviate the pain, can be found frequently in literature on Islamic ethics. (201) Imam Yousef was a physician in his home country in the Middle East but quit medicine when he came to the United States. He is an imam at a mosque in a Washington, DC, suburb. When I had the chance to meet with him at the masjid (mosque), he talked about what he believes to be some of the main teachings of Islam when it comes to illness and death. Like others, he reiterated that God created the disease, and therefore the cure will come from God as well. Imam Yousef said, “And we believe in Allah. We believe that the cure comes from God. The cure comes from God, but the treatment comes from the doctor.” He was clear that there is a difference between the cure, which God holds, and the treatment that we may receive in a hospital or doctor’s office. The two are not the same: “There is a big difference between treatment and the cure.” He went on to distinguish the two: “Treatment comes from the worldly resources that we have, but cure comes from God because the treatment may not work. But you have to do your best, first.” God will eventually reveal the cure—​it may not be known right now, so Imam Yousef stressed that this will also require patience and understanding from patients and their families. Similarly, a physician who works at a mosque in the local region with their free medical clinic, Dr. Alaoui, expressed that God knows the cure, but works through the doctors and medical staff. He said,

Islam and end-of-life care  55 It doesn’t make you accomplished because you know that this is mercy, this cure is the mercy which comes from God to the patient. And it comes through me, the doctor. It is God’s patient. And God is sending the mercy to him through me, I’m the carrier of God’s mercy, through my knowledge. He emphasized that physicians must provide the best care for their patients not just because it is their duty as physicians—​the Hippocratic Oath—​but because they are the ones who are to be doing God’s work. This was one key belief that many of my participants held in common and attributed to Islam. The previous chapter focused on some of the major aspects of the model for end-​of-​life care in the United States, with particular attention to the historical and constructed nature of biomedicine and the US health care system. This chapter will build upon the prior chapter in that I will discuss some of the predominant Islamic beliefs and practices in the United States, and more specifically, among the participants in my research, and give some attention to how these intersected with the ways that end-​of-​life care is approached by the health care system. Muslim physicians in particular noted that religion, especially Islam, is a source of hope for dying patients and their families, which has been documented by anthropologists dating back to Bronislaw Malinowski’s (1922) influential ethnographic work in the Trobriand Islands in the southwestern Pacific in which he talks about magic and how the Trobrianders drew on the supernatural to protect them against rough seas and high stress during excursions that were part of the Kula (an exchange among the elites, mostly men and chiefs, of shell necklaces and armbands that resulted in gaining of status). Dr. Mir noted, One thing that I found interesting is that regardless of how minute the situation is or how severe the condition or diagnosis are, families usually find religion as, how should I  say it, their savior, their support system. Whenever something comes that creates too must stress or difficulty, they want to resort to religion to find out what’s going on and what should happen next. I want to note here that I do not intend to make it seem that there is only one correct understanding of Islam, as it is clear that multiple interpretations exist that are socially and culturally informed. In addition, scholars have reminded us that the Qur’an was written within a particular time and context, meaning that it may have different interpretations depending on the developments in society since its reveal. Abdulaziz Sachedina (2009) observes, “the solutions that are offered in the Qur’an are culture specific and not normative for a timeless application and, therefore, cannot be used as paradigmatic in delivering judicial decisions that recur throughout human history” (145). This heterogenous nature of Islam can be seen in multiple realms. For instance, Laura Kurth and Pieter Glasbergen (2017) argue that what

56 Approaches counts as halal (permitted) in terms of food is diverse among Muslims in the Netherlands: “The consumption of halal food may be seen as an expression of the Muslim identity. Within Islam, different interpretations of ‘halal’ exist and the pluralistic Muslim community requests diverse halal standards” (104).2 So, even what Dr. Fudadin and I discussed in terms of the categories of action, can have different meanings depending upon the school of jurisprudence and other social and cultural factors. One of the imams in the local area I interviewed, who is originally from the Middle East and has a background in engineering, stated, Islam is not a stamp. There are various interpretations. I  will give an example. The Prophet was sitting among his companions. A man walks in. He said, “Oh Prophet of God, what is the best thing you should advise me to do?” What is the “best” thing? He said, “Be good to your parents.” And he left. A few minutes later another guy came, “Oh Prophet of God, what is the best thing I can do?” Same question. He said, “Perform hajj.” He left. Another guy came, “What is the best thing to do?” The Prophet said, “Go with the army.” The imam then went on to explain the meaning of what he had just recalled: “Now ask yourself, three different people asking the same question, and getting three different answers. Why are the answers not the same? Because Islam is not the same for everyone.” Following the imam’s guidance and the previous scholarship that highlights the diverse nature of Islam, I try to capture some of the major themes and patterns concerning Islamic beliefs and practices that I gathered during my research in this chapter. In no way am I  trying to argue that all Muslims in the United States hold all of them in common. Part of this is because there is a large difference between “Islam” and “Muslims.” These terms are not synonymous. Social, political, cultural, and economic contexts inform religious beliefs. Islam itself is not homogenous with multiple interpretations, as the imam pointed out to me. Saed Zimeri (2015) states of Islam, Like any other doctrine it is subordinated to, mediated by, and lives through interpretation, which is undertaken by … culture-​bound … and imperfect human beings. It is in constant dialogue to secure and play a role with the cultures that respect its moral and legal sanctions … how else can one understand Islam but as being historical. No matter how abstractly or timelessly it is thought to be, its historical character cannot be separated from it. (101) Zimeri continues by arguing we must situate Islam “within its context of production just like the Muslims’ understanding and practices have to be

Islam and end-of-life care  57 placed in their own contexts” (2015, 105). When I asked Dr. Mir about how he tends to Muslim patients who are nearing the end-​of-​life, he responded: When it comes to end of life, for example, the one thing about Islam that at least I see and is misinterpreted in society and majorly in the media, is that religion is interpreted culturally … So every culture, every ethnicity, has their own interpretation of Islam and they come with their own cultural things. So, medicine, for example, believing in medicine or in miracles and God, is open to interpretation. With caution and attention to nuances, I will provide some of the beliefs and practices that I found to be repeated within my interviews, observations, and visual and textual analysis, and in doing so, will also try to highlight the places that they intersected with what I learned about the general model for end-​of-​life care in the United States.

Decisions about end-​of-​life care and preparation for death Dr.  Mir was careful not to make overgeneralizations about the Muslim patients and families that he has cared for at the end of life, but did note that he finds Muslim families tend to be more involved in decision-​making regardless if they are practicing their faith or not. Family involvement can also be attributed to cultural factors and context: Everything, every single person, member of the family wants to know and they come up with their own diagnosis. The one thing I’ve found that’s a bit interesting is that when you want to do a procedure, something that you need patient permission or consent for, it’s always that ten different people have to express their opinion. And, despite the fact that we explain that this is the patient’s decision, it’s like “Oh he’s under stress, he’s not in a clear mind, he cannot make decisions. He wants us to help him or support him in the process.” Nathan Boucher, Ejaz Siddiqui, and Harold Koenig (2017) similarly note, The Muslim faith and the cultures in which the Muslim faith is practiced influence the way health care decisions, including advance care planning, are made. For example, Muslim families often share health decisions for individual family members, in effect rejecting the concept of autonomous decision making typically encouraged in US health care. (19) Their suggestion that end-​of-​life decision making among Muslim families counters the idea of autonomy so cherished in the US health care system, reminded me of a one Muslim female patient who I followed in the hospital.

58 Approaches She was in her early fifties and originally from West Africa. She was deemed as being “actively dying” by her physicians due to the advanced state of her cancer. She was breathing on her own, but it was slow and labored. Each day, the physicians expected her to pass away, and one day, the attending physician shared in the care team meeting that the “death rattle” had appeared. She died just about 24 hours after he first documented this. When I  first visited her hospital room, I  found her lying in the bed hooked up to several monitors. She was not awake and, at that point, was not able to speak for herself any longer, but I had the chance to sit down with her husband, Ahmed, also from West Africa, to talk about her experiences in and out of the hospital during her battle with cancer. I was looking forward to visiting her because the physician stated that the nurses were unsure of how to handle all the visitors in her room. While they wanted to support the patient and her family, the visitors—​both family and non-​related—​sometimes got in the way of the care they were to give by asking lots of questions, by just being physically in the way, or by requiring the nurses to delay their checks due to prayers and other activities, such as the singing that they did to try to heal and comfort the patient. Most of the non-​familial visitors were also from the same immigrant community as the patient and Ahmed, and therefore, shared some of the same cultural beliefs and practices. When I  first entered her hospital room, I noticed on the door a sign that read no more than two visitors at a time could be in the room, not including her husband and children who were by her side day and night, taking turns sleeping on the couch in the room so the patient was never alone. It was not just about this patient, but a community had formed in her hospital room with her body in the center. This community had an impact on the care that she received since sometimes the nurses found it tough to work around them due to them wanting to know more information about the patient’s case or physically filling the room, but it also helped support the patient and her family during this extremely difficult time. Moreover, Boucher, Siddiqui, and Koenig suggest, as did many of my participants including Ahmed, that “life, death, and suffering is determined by Allah according to the Qur’an (57.22)” (2017, 19). Even though Allah determines when death will occur, Muslims should engage in advance care planning, prior to or early on in an illness, because in Islam, death is seen as being a natural part of life that we will all have to face at some point. The end of life from an Islamic perspective has been published by IMANA. IMANA states, Cardiopulmonary function, when diagnosed by a physician or team of physicians, is considered death. The concept of brain death is necessitated when artificial means to maintain cardiopulmonary function are employed. In those cases, cortical and brainstem death, as established by specialists using appropriate investigations can be used.3

Islam and end-of-life care  59 IMANA encourages Muslims to have an advance directive or living will and to talk to their health care providers and families about end-​of-​life care: “IMANA recommends that all Muslims have a ‘Living Will,’ ‘Advance Directive’ and a case manager for their care, to help physicians to know their wishes, when he or she is unable to give directions (i.e. in a coma).”4 A sample Islamic advance directive can be found through the organization.5 Dr. Hamed commented during our interview, “So, advances in technology has created a lot of ethical and religious issues, which we need to address.” He explained that it is important for Muslims to talk about end-​of-​life care before it is too late given all of the options and scientific advancements in places like the United States: Not when somebody is very sick and their thinking is not clear and they are in pain, that is not the time to do these kinds of documents. Now these should be part of the person when they are up and about and in good health and basically thinking clearly. The physician or health care provider plays an important role in decisions about end-​of-​life care for Muslims, particularly since there are several different courses of care that could be pursued in the United States, as Dr.  Hamed stated. While the Qur’an and hadith provide guidance as to end-​ of-​ life decisions, it is also important to listen to what the medical experts have to say. Maryam Sultan (2017) writes, The physician’s role in explaining the patient’s prognosis and the benefits and harms of specific interventions is critical in allowing the patient, or proxy, or surrogate to make the most appropriate decision of care in accordance with their Islamic beliefs and the patient’s previously established wishes.6 The significance of the physician’s medical opinion and advice was expressed to me by Ali, a Muslim man in his mid-​twenties who had recently lost his father after his long battle with a terminal illness. Ali, along with his brother and mother (who was not born a Muslim but married a Muslim man and converted), decided to remove his father from life support at the hospital where I conducted fieldwork after it was clear that he was not going to recover. Ali had several conversations with the Muslim physician on the care team, Dr. Idrisi, about what to do, and also sought the advice of imams in the local DC area before ultimately making the decision to remove his father from life support and allow him to pass away. He went to one mosque that is well known in the region and was disappointed by his encounter with one of the imams, who did not seem to have the time to sit down to listen to his story and to answer his questions about what he should do about his father’s care. Ali said,

60 Approaches So, we asked the imam, “Who can we go to? Who is a colleague of yours?” He pointed us to another imam at the same mosque who was giving a lesson. So, we went and sat in on the lesson and talked to him after. And, he gave a completely different opinion. The first imam had told him rather hastily that if he removed his father from life support, then he would be commissioning his death, which is not permitted, but Ali said that maybe he did not truly convey his father’s terminal state to this imam. However, the second imam they visited had a different opinion: The main thing he said was “Don’t come to a sharia scholar, basically a religious scholar, asking for a medical opinion.” And there was actually a doctor [at the mosque when we talked to the imam] who somehow came into the conversation. And he said, “You know, I’ve seen similar cases and honestly, if there’s no hope, like nothing, you shouldn’t send them to hospice.” Ali was convinced at that point: “I don’t even know who that guy was. Just some guy, a doctor, who ended up in the conversation. And the imam, he was listening, and he said to me, ‘Do as the doctor says.’ ” Ali’s experience with his father’s death shows that decision-​making about end-​of-​life care is not to be taken lightly, and not only should it involve the family whenever possible, as noted by Dr. Mir, but also the actual physicians who have the specialized training and knowledge and can provide medical guidance. Moreover, Ali’s experience demonstrates that Islamic tenets and understandings are not always the primary drivers in the decision-​making, but they can provide a framework within which choices about the type of care and treatment are made. Dr.  Mir was a little bit hesitant about involving an imam in decision-​ making about end-​of-​life care. Although he himself identifies as a Muslim, he was unsure of the benefit of seeking out guidance from a religious leader. He stated, Interpreting Islam needs to be done by someone educated in the religion and who has an understanding of other cultures. Just because he can read Arabic and read the Qur’an, doesn’t make him equipped to interpret religion. And that’s one of the reasons, at least, in my opinion, that we are in such hot waters these days. Everyone makes their own interpretation, and most of these people who consider themselves imams, they come from a background in which they are “homegrown.” For example, learning something about religion and all of a sudden becomes an imam. Dr. Mir explained that on the one hand, patients and families see hope in religion and it is their choice to seek out religious guidance, but on the other

Islam and end-of-life care  61 hand, he said it would be better to listen to the health care providers and place more faith into what they have to say: So if it was my family, I would put some time in and do research to find out what’s going on rather than going to an imam because it depends. An imam can be educated in terms of the rules of Islam and the law, and knows what he’s talking about, or he is just interpreting everything based on his own beliefs and based on what he understood from his kin or parents. Dr.  Mir’s concerns speak to the fact that “Islam has no ordained clergy. However, Islamic scholars or Imams (leaders) may teach and interpret the Qur’an” (Leong et al. 2016, 772). One of the Muslim chaplains I spoke with about his work at a hospital in an urban center on the East Coast (not where I conducted research) stated that he sees his role not as one to provide definitive religious answers to patients and families about treatment but to put things into “Islamic terminology” for them. He often has to educate the Muslim patients and families that he is called to see about what he does as a chaplain and explain to them that he is not an imam or sheikh, but someone who can pray with them, help them understand medical recommendations, and point them to a variety of resources at the hospital and in the community as needed. He said that he has become involved in a few ethics consults concerning Muslim patients who are nearing the end-​of-​life. He was specifically asked to do so by health care providers. In these consults, a multidisciplinary team met, usually with the family of a Muslim patient, to talk about options for moving forward. Even though he does provide religious guidance in these consults about care, he more so sees his role as “supporting the family to lessen the burden.” Dr. Idrisi found it difficult to care for patients when particular imams from the local area became involved with the cases—​not all imams, but some. He told me that one time he was caring for an elderly Muslim man who was dying. The patient was connected to life support and there was little to no chance that he would recover. The wife was with him at the hospital, and the physician explained to her that, in his medical opinion, her husband would not have a quality life ever again. Because of this, she could remove him from the ventilator during the month of Ramadan, since Muslims believe that Ramadan is a special, blessed time when God forgives sins. Because we don’t know when our last day will be, Muslims who pass away during Ramadan are considered to be blessed—​they might be granted entry to Paradise because they passed away during such a holy time.7 However, one imam visited the wife and told her that if she took her husband off the ventilator, that would be considered murder and she would be punished for it. So, she hesitated to follow the physician’s advice. It took the physician some time to convince her otherwise, and eventually she did, in fact, remove her husband from life support during Ramadan.

62 Approaches IMANA does not promote using life support to prolong suffering or prolong the lives of patients who are in a vegetative state with no chance of recovery. Life support is supposed to be temporary and when the care team concludes that the patient will not have a quality life again, then it may be time to stop mechanical life support: When a team of physicians, including critical care specialists, have determined, no further or new attempt should be made to sustain artificial support. Even in this state, the patient should be treated with full respect, comfort measures, and pain control. The patients should be allowed to die peacefully and comfortably. (Al-​Bar and Chamsi-​Pasha 2015, 250) Sustaining or withdrawing life support is a controversial area in Islam, as it is in other religions as well. The question of whether or not a patient should be kept on a ventilator is complicated by brain death and whether or not organs are failing without brain death. The Prophet stated “above all do no harm” (Al-​Bar and Chamsi-​Pasha 2015, 248). This has been taken to mean that death should not be brought about quicker, such as through physician-​ assisted suicide or euthanasia, but rather, using aggressive treatment when it is not seen as having definitive benefits can be avoided. Likewise, the Islamic Society of North America (ISNA) published a special issue of its magazine Islamic Horizons dedicated to end-​of-​life care and decision-​making. In the article, “Q&A: End-​of-​Life Issues,” Dr. Muzammil Siddiqi (2004), a previous ISNA president,8 states, If, however, medical experts determine that a patient is in a terminal condition and there is no hope for recovery, then it could be permissible for them to stop the medication. If the patient is on life support, it may be permissible, with due consultation and care, to decide to switch off life support and let nature take its course; but under no condition it is permissible to induce the patient’s death. (35) The family can decide to remove a patient from life support when the outlook is very poor, but they should seek the opinions of the patient’s health care providers. It is important in Islam to seek the advice of those who are knowledgeable and seen as “experts” in a particular field.

The dissemination of knowledge and weighing the benefits against the risks As I  wrote in the introduction, one imam stated that Muslims believe that when you are sick, you should seek medical attention from someone who has the proper training—​whether this means someone who has attended

Islam and end-of-life care  63 medical school or who is skilled in another type of healing. The leaders of mosques that I interviewed all noted that, in Islam, the pursuit of knowledge is extremely important. It is critical that you become educated. Similarly, Deeb (2006) found that in Shi’I Lebanon, modernity and being “modern” encompassed material progress, such as employment and education, as well as spiritual progress. These two were not in a hierarchy nor were they separate from each other in how pious women in her ethnographic research defined modernity. The same imam who told me that Muslims should go to the doctor when they are sick also emphasized the importance of hard work, the need to use your knowledge and skills to help the broader community, and the need to understand that all of your actions can potentially impact others. He stated, Any work. You can try to perfect it: “Did you perfect your study? Did you perfect your listening? Did you do this, did you do that?” Even driving. Allah wants me to perfect my driving so I don’t harm others. The imam also recalled, “The Prophet also said, ‘Seek knowledge until you die.’ ” Dr. Alaoui, who I noted worked to develop a free medical clinic through a local mosque, stated that, as a doctor, it is important to read up on the latest literature and studies about particular conditions, and to ask his colleagues questions if he does not have the answer. He was clear that Islam does not permit someone to give false information because they do not know the real answer, such as a physician making best guesses when they are not familiar with something instead of consulting others who may know more or acquiring more knowledge before talking to a patient. He said, If I don’t know this job, I go and read up at home. Bring myself up to date with the knowledge. God knows that my knowledge in that subject was inadequate when I was talking to the patient, it was inadequate. So [the doctor] is going to question. Therefore, the doctor has to be very careful, he has to keep himself up to date with knowledge. The importance of the quest for knowledge was also raised by one panelist during a presentation given at the American Society for Bioethics and Humanities (ASBH) in 2012, who stated the Qur’an encourages people to seek knowledge and to use it in ways that are beneficial for all of humankind. Another panelist noted that it is believed in Islam that “God bestows honor on man so they can learn.” In addition, Dr. Main Khalid Al-​Qudah of the Assembly of Muslim Jurists of America issued this fatwa regarding “the importance of studying secular knowledge” in 2011, seeking any beneficial knowledge that people need for the betterment of their life is devotion and rewardable deed. This is regardless of whether this knowledge is a religious or a secular one. Many of the Ahadeeth of the Prophet SAAW in this regard did not specify what kind of knowledge

64 Approaches people should pursue. People in general need all kinds of knowledge, including the Islamic ones obviously.9 It can be said that gaining knowledge in a particular field or medical specialty or just about your own health and body is of particular importance in Islam. Like Dr. Alaoui, one of the volunteer Muslim chaplains, Meryem, who I was able to interview about her work at the hospital where I conducted research, told me that like the Muslim chaplain from the other hospital I  referenced earlier, she did not see herself as someone who can give absolute answers to the patients and families she visits because that is outside of her responsibilities as a chaplain. Instead, she sees her job as directing Muslim patients and their families to verses in the Qur’an and to relevant hadiths that may bring them comfort or help them make sometimes difficult decisions about end-​of-​ life care. Meryem did not see providing religiously based answers to patients and families’ questions as part of her role as a chaplain, as she reiterated that she is not a religious leader or Islamic scholar. Rather, oftentimes she would read the Qur’an while in the hospital room and pray with the patients and families, asking God to give the health care providers the wisdom and skills they need to properly care for their patients as they approached the end of life or battled serious illnesses, to relieve any physical suffering that patients may be experiencing, and to protect the patients from hospital-​acquired infections. Meryem mentioned that one of the aspects she prays about is the need for cleanliness in the hospital, as she has found this to be of a great concern among Muslim patients and families.10 She explained, I pray for the doctors in making decisions. I pray for the nurses who are supposed to be compassionate and kind and clean and accurate and bring all these things up because people in the hospital worry about that stuff. I asked her to elaborate on the importance of cleanliness. She responded, You have to wash before you go in and you have to wash before you go out. Some people are really concerned about cleanliness. I  mean I’ve had Muslim friends who have caught disease in the hospital because of unclean habits. (I will discuss cleanliness and hygiene again in Chapter 5.) Like Dr. Alaoui, Meryem made it clear to me that she does not believe offering false hope to patients and families or telling them what is right or wrong according to Islam—​except for acts like suicide and euthanasia, which are, in fact, prohibited (Mousavi et  al. 2011)—​or would be looked upon favorably in Islam, but rather, she can use the gifts and talents that she has to help ease the anxieties and fears of patients and their families during end-​of-​life care. The health care providers I worked with as well as Meryem tend to several patients at the hospital, both Muslim and non-​Muslim, although Meryem

Islam and end-of-life care  65 stated she infrequently is called to visit non-​Muslim patients. She is more on-​ call for Muslim patients and families who do not wish to meet with a chaplain from another faith. Dr.  Fudadin’s discussion of not over-​utilizing available resources also holds true for their work, as they must split their time among multiple patients and families. It also resonates with some of the difficult choices the families of dying patients have to make in the hospital. The one imam I interviewed told me, Everybody passes away. So, if you have that confidence and you get older … I have this year two people that I loved dearly in their 70s and 80s from the mosque. One of them is my beloved brother. He was in his 80s and all of a sudden, he got sick and he went to the ICU. And they connected him to tubes. His daughter is my age. She came to see me. And she said, “My dad is in the hospital and my brother is insisting on keeping the tubes.” I said check with the doctor to see if you remove the tubes how long it will take [for him to pass]. He said if we removed them, within seconds he will be dead. The imam then recalled how he provided her with some advice. He explained, I said pull the tubes out. Your father is not going to recover. The ICU is for someone who had a motorcycle accident that has a chance of recovery. This is old age. Keeping him like that and you sitting next to him with your brother and sister, you stopped your life. That’s 10,000 dollars a day [for the cost of the ICU]. Islam does not tell you to waste your money. Take the tubes out. If he is meant to live, he will live. If not, that’s God’s will. He stated that his advice also came from verses in the Qur’an that state God does not want to burden anyone:  “God does not charge a soul with more than it can bear” (2:286). He did not mean that an elderly dying family member is a burden in a negative way, but that the physicians did not see it as leading her father to live a quality life again, and the ICU is costly, which could potentially drain her bank account or her father’s savings. This would not be looked upon favorably by Allah either. Dr. Alaoui said that he has found that some Muslims view aging and ill parents as anything but a burden, and see it as an honor to care for them when their bodies are frail and weakened:  “They do not mind changing diapers if they are old, they do not mind changing their sheets, cooking for them.” However, he also noted there was a point when the health and well-​ being of the caregiver also needs to be taken into account. They must carefully weigh the benefits and risks of any life-​extending measures for their aging loved one and they should allow God to make the ultimate decisions. In the special issue of Islamic Horizons (2004) on end-​of-​life care, published

66 Approaches by the ISNA, Dr.  Ahmed Nezar Kobeisy, author of Counseling American Muslims: Understanding the Faith and Helping the People (2004), writes, Islam makes the family central to life and enjoins Muslims to respect and care for their parents and elders—​repaying them for their care and love. This sets into motion an unending cycle of care and love through the journey of life. The faith equally stresses the care and respect of those who complete their worldly journey, advising a respectable send off that is also to serve as a reminder that all of us leave with nothing from all that we adored in life. (17) Kobeisy reminds readers, the Qur’an states that life begins and ends with vulnerability and weakness. The first vulnerable state is that of infancy and childhood. The last one is shaikhakhah, i.e. old age. Although death could interrupt life at any time between these two stages, old age represents the normal final phase of life. (2004, 18) The article continues to highlight that even though we may try to stave off aging and death, they are natural parts of life that we must experience: Many tend to fight the signs of aging by dying gray hair or even undergoing surgical procedures; however, the reality is that such a stage and such effects on physical and mental existence are irreversible. Furthermore, regardless of how long life is, death is the final conclusion of life; no soul will escape death. (Kobeisy 2004, 18) Similarly, after the imam talked about his experience counseling to woman about her father, he explained, “Death is a part of life. You are born, and you die, it’s the cycle of life. This is the law of God. So be happy with it, but do something good.” The naturalness of death is reiterated by Sachedina (2005), a prominent scholar in Islamic Studies, who suggests Muslims should “entrust nature to take its own course” (776). Sachedina goes on to say that not accepting that death is part of nature may lead to the use of life-​extending measures that would not be of any benefit to the patient, and could even cause more harm and suffering. What I found interesting in the imam’s remarks about the case of the woman and her father, and in Sachedina’s argument, is that the benefits need to be weighed against the risks when it comes to end-​of-​life care, and if the risks are too great or the benefits are too small, then certain types of care should not be pursued. Islam can be used pragmatically to justify allowing someone to pass away naturally when the time has come. One panelist during

Islam and end-of-life care  67 the ASBH presentation that I referenced earlier stated that various bioethics questions will not arise in many Muslim countries, but it would be worthwhile to develop a “universal platform” before tackling some of the more specific issues and questions in different parts of the world. However, my response to the idea of creating a “universal platform,” based upon my research for this project, is that it actually may not be possible given the different types of health care available and accessible in different Muslim communities; the multiple interpretations and individual understandings of Islam that exist; and the complex ways that religion is intertwined with social, cultural, economic, and political factors, which requires careful attention to the nuances.

Caregiving preferences and the changing landscape Sachedina’s (2009) statement that the Qur’an was written within a particular time and context highlights the need for interpretation given the changes and advancements that have occurred around the world since its reveal. In its special issue on the end-​of-​life, the ISNA tends to some of the nuances when it comes caregiving for those who are elderly and dying, specifically within the context in the United States. Kobeisy states in the article “Care for Muslim Seniors,” In Muslim cultures based on Islamic teachings, the idea of younger members honoring elders is imbedded in hearts and mind … Caring for parents and elders is at the heart of Muslim cultures and traditions, and sending one’s parents or elder loved ones to nursing homes or hospice facilities is unheard of in most Muslim cultures … No doubt elders would love to have the trust, the warmth, and companionship their loving children can provide for them if it is at all possible. The problem is that this is not always possible due to various cultural, economic and even medical reasons. Our cultures have changed, and these traditions have disappeared from most Muslim cultures due to global cultural shifts, including industrialization, division of labor and Westernization. (21) Dr. Bashara, who I noted works at the hospital as well as at a private practice and in nursing homes in the DC area, stated that he sees very few Muslim patients in the long-​term care facilities that he tends to, much less than what he sees at the hospital. Kobeisy (2004) observes, “With these factors of change, in most cases, care facilities for elders have become a necessity” (21). I heard conflicting views about placing Muslim elders and dying loved ones in nursing homes from my participants; however, I found that underlying their statements was the fact that if the care becomes too much for family members to handle, then finding an alternative would be acceptable in Islam because you do not want the elder or dying person to experience a greater amount of suffering because they are not getting the right type of care.

68 Approaches Dr. Fudadin stated that his mother-​in-​law was in the nursing home for very brief period of time. He said, My mother-​in-​law was in a nursing home for a short while [in the United States]. And when I saw a short while, I mean, like just about three or four days. Then the family says, “Well, this is not going to work for us.” They didn’t like it. We didn’t question it too much because I know that deep down inside my wife wanted her to be at home. I asked him more about using long-​term care facilities for dying parents or loved ones, or having the patient at home with in-​home care (such as hospice or home health aides), and his response was that, in Islam, it can be justified, although he noted that nursing homes and home health care are not common in many Muslim countries.11 He said, But then there’s the point to which if the family is not able to care for the person, if the person requires greater care, or more technical care than what the family can actually provide them, then Islam say’s it’s OK [to place them in a nursing home or to keep them at home but use home health care]. The need for and use of elder care facilities more globally has become a greater area of research for anthropologists, as they see how intergenerational and communal ties become weaker due to neoliberal policies and programs and global capitalism. Having to meet greater economic and social demands means that adult children have less time, energy, and resources to take care of their older or ailing parents themselves than previous generations. For example, Rose Kay Keimig (2020) and Yan Zhang (2020) note there has been an increase in the number of elder care facilities in China over the past several years, and many of these facilities are now at their capacity. Anthropologists have explored the financial costs associated with elder care, which has two sides: on the one hand, who can access these types of institutions given that the quality ones often come with a high cost, and on the other, can a family member afford to quit their job to stay at home to take care of a dying or elderly parent or loved one. If they cannot afford to lose their income, then they may need to seek out other options of care, such as a nursing home, in-​home care, or adult daycare facility. Dr. Fudadin emphasized that they were able to financially afford to place his mother-​in-​ law in a nursing home and then bring her home with some in-​home care when they needed it, but his wife was able to leave her job to do so. Not everyone can afford to do that. He said, We were able to afford to do it. To help her at home. At nights of course, we were home alone with her. So, it really depends on the resource. Now if we couldn’t afford [to have my wife quit her job], if it was absolutely

Islam and end-of-life care  69 necessary for my wife to continue to work, then it would have been acceptable [in Islam] for my mother-​in-​law to be in a nursing home. To have someone who could provide for her and take care of her when you are unable to do so. Dr. Hamed agreed with Dr. Fudadin in that care and services outside of the family can be used when needed and are acceptable in Islam. Dr. Hamed reiterated that in Islam life is sacred and death should be respectable and comfortable with no unnecessary suffering. He stated during our interview, “So a good death basically is when there is minimal suffering, when the quality of life is preserved and the person has lived a period of time which is determined by the Creator.” I went on to ask what his view was of how Islam would approach using a nursing home or other type of service for someone who is dying. He said, “Absolutely accepted. No contradiction with the faith, they are basically … first of all, in Islam, if you are ill, it is recommended that you seek the treatment. It’s not like treatment is forbidden.” Dr. Hamed explained that if a person nearing the end of life or battling a serious illness is in need of particular services and care, then it should be sought, regardless if it is in a nursing home or having home health care. If the family is unable to provide what the person needs, then they may experience more suffering, and death would not be comfortable for them: “If you are in need of care, you’re expected to receive it, whether by family, or by palliative care, or hospice, or nursing home, it doesn’t really matter.” Dr. Hamed and Dr. Fudadin understood Islam as being against unnecessary suffering during the end-​of-​life, a standpoint that IMANA has also adopted. This was counter to what has been noted about death in Islam in some of the literature. K.A. Choong (2015) writes, Muslims are advised to be steadfast in dealing with any pain and suffering they are confronted with, since such forbearance would not only lead to the expiration of sins, but would also be rewarded in the afterlife. (Qur’an 2:54, 4:146, 39:10, 99:7–​8; Sahih Al-​Bukhari, 1994). (28) Dr.  Fudadin, however, was well aware that I  would receive a different answer from another Muslim. He told me, “Now you’re going to go speak to another Muslim who knows a lot about Islam and ethics and they’ll give you a completely different answer.” He was right. One of my participants who contradicted Dr.  Fudadin and Dr.  Hamed in some ways was the imam from the local area who counseled the daughter about her dying father. He clarified that Qur’an discusses taking care of both parents as they age or when they are ill, “That if your parents reach old age, and the Qur’an’s words are ‘one or both of them.’ ” He went on explaining what Islam says about aging parents,

70 Approaches harshly. Do not even say “āuf,”12 and lay down your wing of honor before them. Make a prayer to God, “Oh God, be merciful to them, as they were merciful to me when I was a child.” The imam stated that we are not to “think of old people as old,” and emphasized that he would not send his mother to a nursing home, as he views doing so as going against his faith. He said that a Muslim should “show humility as a person” and be grateful for the care that their parents provided them. Showing gratitude could be done by adult children having older parents live with them in their homes. He believed that it was not acceptable to send an older person to live in a nursing home or similar facility. Instead, he stated that it is better to have elderly parents live with their children and have home health aides and nurses tend to their medical needs—​unless the family or home health providers cannot provide the care that is absolutely necessary for the person and they would suffer more from not receiving particular services that can only be provided by skilled providers in elder care facilities. His aging mother lives with him at his home in a DC suburb and he is convinced that since she moved in with him and his family that she is more energetic, in better health, and more active than before, and certainly more so than if she was in a nursing home. The imam said that his wife had to accept that his mother would be living with them: I said, “Honey, you are my wife, I love you, she is my mother, I love her. My mother cannot have another son … My mom comes number one. You come number two. It doesn’t mean I love you, number two. I love you as my wife, but my mom is my mom.” Islam tells me that mom has to be in your house … This is mine. The man is responsible. His sentiments can be linked to the Qur’an, which reads:  “And act humbly to them in mercy, and say, ‘My Lord have mercy on them, since they cared for me when I was small” (17:23–​24). Moreover, there is a hadith that reads as follows: “Those who do not show mercy to our young ones and do not realize the rights of our elders are not from us” (Sunan Abu Dawud). When our interview took place, the imam did not see a need to bring in someone else to care for his mother, as she was in relatively good health, other than some common physical issues that come along with aging. He said, [My mother] will be in my house, and she’ll be respected, she’ll be loved by me and my wife. Because she’s also part of that atmosphere. They will say “Now she’s old, now, you know, we have a babysitter for her, have someone else to care for her, somebody else to sit down with her.” No, we don’t do that and that makes a big difference.

Islam and end-of-life care  71 Even though there were discrepancies in the responses I received about the use of nursing homes or in-​home health care for a dying Muslim person, the one thing that my participants held in common is that the dying person should be respected, and this means that they should not suffer. Choong (2015) notes, “Muslim scholars have highlighted that recognition of an inherent value and larger meaning in pain and suffering should not overshadow nor in any way prevent Muslims from seeking pain relief ” (35). When I first started my fieldwork at the hospital, I was told by the medical director of the care team that the family of a recent dying Muslim patient she cared for, who was not fully aware of what was happening due to their advanced state of disease, was against the use of opioids because of their faith, believing that use of such medications could cause the person to lose their physical connection to the world or to curse God for their illness. This left the director fewer options to control the physical pain that the patient was suffering as their death approached. However, this seemed to be relatively uncommon in my fieldwork, and, more often than not, patients and families were accepting of opioids (as well as non-​opioid analgesics) to control pain and allow death to be more comfortable. Furthermore, those that were against the use of nursing homes or other types of elder care facilities due to their religious beliefs concerning the role of the family in care and the need for children to take care of their parents, recognized that there may be a time when external services are needed or when other types of in-​home care are necessary because the dying person may require a greater amount of care, or more complex care, than what the family can offer them.

The nuances of Islam and end-​of-​life care My participants ever so cautiously weighed the risks against the benefits and the dying person’s well-​being and comfort against their Islamic beliefs. Sometimes confronting death and dying directly created new and different ways of interpreting what Islam has to say about end-​ of-​ life care. In this chapter, I  tried to lay out some of the dominant Islamic discourses and understandings that shape how Muslims experience end-​of-​life care and what they believe about illness and death within the context of the United States. I also explored how Islamic principles intersected with the approaches and values of the US health care system. The next chapter explores the religious beliefs and medical practices of the Muslim health care providers I worked with over the course of my research. I analyze how their faith and their work are intertwined, and, at times, actually shape each other, as well as how their care for dying patients informs their identities as Muslims.

72 Approaches

Notes 1 In Islam, these terms may be used:  wajib/​fard, mandub/​mustahabb, mubaah, makruh, and haram. Some schools of jurisprudence (fiqh) will make distinctions between wajib and fard with the former meaning “obligatory” and the latter meaning “necessary.” 2 In my fieldwork at the hospital, halal food was one concern that a few Muslim families raised with me, as they were unsure if the Jell-​O that their loved ones were being served, mostly because its consistency is soft making it easy to swallow, was actually halal. 3 Islamic Medical Association of North America. 2005. Medical Ethics from an Islamic Perspective. Accessed March 20, 2020, https://​imana.org/​medical-​ethics-​ from-​an-​islamic-​perspective/​. 4 Islamic Medical Association of North America. 2017. “Medical Ethics from Islamic Perspective  –​Part  8:  Islamic Living Will and Advance Directive.” Facebook, June 6. Accessed March 20, 2020. 5 Ibid. 6 Sultan, Maryam. 2017. “Pulling the Plug:  The Islamic Perspectives on End-​of-​ Life Care.” Yaqeen Institute for Islamic Research, November 13. Accessed July 24, 2020. https://​yaqeeninstitute.org/​maryam-​sultan/​pulling-​the-​plug-​the-​islamic-​ perspectives-​on-​end-​of-​life-​care/​. 7 Al Saloom, Ali. 2016. “Ask Ali:  Deaths during Ramadan Are Considered Blessed.” The National, June 30. Accessed March 24, 2020, www.thenational.ae/​ arts-​culture/​ask-​ali-​deaths-​during-​ramadan-​are-​considered-​blessed-​1.225325. 8 More information about Dr.  Siddiqi can be found here at the website for the Academy of Judaic, Christian, and Islamic Studies at the University of California Los Angeles (UCLA): https://​afjcis.org/​team/​muzammil-​h-​siddiqi-​ph-​d/​. 9 Assembly of Muslim Jurists of America. 2011. “Importance of Studying Secular Knowledge (e.g. engineering/​busines, etc.) Fatwa ID 84495,” May 21. Accessed July 20, 2020, www.amjaonline.org/​fatwa/​en/​84495/​importance-​of-​studying-​ secular-​knowledge-​eg-​engineering-​business-​etc. 10 For more on cleanliness in Islam see Al-​Kaysi 1986, Rassool and Sange 2014, and Shuriye 2015. 11 In Morocco, for example, receiving palliative care at home is relatively new, only starting around 2015, and it is not available outside of two major cities:  Casablanca and Rabat. See Human Rights Watch. 2016. “Maroc:  Des milliers de personnes sont exposées à des souffrances inutiles en fin de vie” February 4.  Accessed March 27, 2020, https://www.hrw.org/fr/news/2016/02/04/ maroc-des-milliers-de-personnes-sont-exposees-des-souffrances-inutiles-en-fin-de. 12 This means you are bothered. It is like saying “ugh” in English.

Part II: Experiences

3  Muslim health care providers The intersection of medical practice and religion

When you talk to Dr. Idrisi about his work caring for patients who are dying at the hospital, you can tell that he truly cares and wants to do right by them. Dr. Idrisi’s father is an imam. Dr. Idrisi completed his undergraduate degree in the United States. He attended medical school abroad before returning to the US for his residency, internship, and fellowship. During his fellowship he worked with the medical director of the care team. Dr.  Idrisi has been recognized as a top doctor in the DC region. His patients and colleagues spoke highly of him and especially of his bedside manner. Ali, the young man who had recently lost his father to a long-​term illness, explained to me that the reason he trusted Dr. Idrisi so much was not just because he was Muslim like himself, although, he did say he identified more with Dr.  Idrisi than other health care providers who tended to his father because they had similar backgrounds, both growing up in the United States as part of a minority group. Ali also trusted Dr.  Idrisi because he listened to his concerns, came well prepared to their meetings by carefully reading his father’s chart, and sought additional information from his physician colleagues when necessary. Ali explained to me, [Dr. Idrisi] is probably one of the best physicians I’ve ever met. I mean, he’s just so knowledgeable, and he cares about his patients. What I appreciated was that he looked at my dad’s case before he came. He didn’t just meet me and talk, you know, like theoretically. No, he looked at it and he came and was like, “My medical opinion is this of your dad’s condition.” Ali then discussed how Dr. Idrisi’s background and faith also played a role in their relationship: And, I mean, that was extremely helpful. I mean, I’m Muslim and he took the time, so I assumed that he had formulated some thoughts that might have weight. And he gave me resources pointing me in the right direction. I actually talked to other people afterwards, some of whom were actually in a similar situation. They solidified his credentials in a sense. They said, “I have nothing bad to say of him. I am completely content with trusting

76 Experiences him to do his job and take care of my family members. He’s a good physician and a good Muslim.” I asked Ali to clarify who the individuals were that spoke so highly of Dr. Idrisi in terms of his medical practice and his faith. He said that one was another physician at the hospital and the other was an imam in the local area who had interacted with Dr. Idrisi. It was clear to me that Dr. Idrisi had left a lasting impression on Ali because of how he approached caring for his dying father as a physician and because of how he was regarded as a Muslim by Ali and others. From what I gathered from Ali, Dr. Idrisi was seen as living out his faith every day and upholding key Islamic principles while treating patients who are nearing the end of life. Whenever I attended the morning care team meetings, besides observing discussions about patients, I also took note of the small talk that the team members made with each other before and after the meeting. On a few different occasions the conversation turned toward ISIL (the Islamic State of Iraq and the Levant, or Daesh). Dr. Idrisi was critical of ISIL and their extremist ideology. He was also critical of Salafism and Wahhabism more generally. Dr. Idrisi claimed that Sunni Islam had been usurped—​not just in the present day but historically—​and the key principles of peace, harmony, and love had been diminished by groups like ISIL and in some parts of the world. Dr. Idrisi talked to me about Sufism stating that he had attended Sufi conferences in the United States. One of the other care team members, once they found out that I conducted my previous ethnographic project on health care in Morocco, told me that Dr. Idrisi believes “true Islam” is practiced in Morocco given that Moroccan Islam is based in part on Sufism. An article from the Huffington Post written by Dr. Mokhtar Ghambou1 (2010), states, Most Moroccans, young or old, practice one form of Sufism or another. As a deep component of the Moroccan identity, Sufism absorbs all members of a society, regardless of age, gender, social status or political orientation. Moroccan youth are increasingly drawn to Sufism because of its tolerance, its fluid interpretation of the Qur’an, its rejection of fanaticism and its embrace of modernity. Young men and women find in the Sufi principles of “beauty” and “humanity” a balanced lifestyle that allows them to enjoy music and love without having to abandon their spiritual and religious obligations. Even though Dr.  Idrisi never personally confirmed to me that be believed Morocco is a place where “true Islam” is practiced, and while I do not want to assume anything, I can see how this could be true given our conversations about Islam, how he practiced medicine and cared for patients like Ali’s father, his general outlook on life and the world, and how he talked about death with his patients and their families—​as a natural part of life that should be approached with grace.

Muslim health care providers  77 Religion and spirituality are seen as integral parts of health care. Research centers, conferences, academic journals, books, and seminars and trainings are dedicated to the relationship between religion and spirituality and health. Giancarlo Lucchetti, Mario Fernando Prieto Peres, and Rodolfo Furlan Damiano (2019) observe, Many studies have shown that spiritual and religious beliefs impact mental and physical health outcomes…There are currently thousands of S/​R [spirituality and religiosity] studies published in peer-​reviewed indexed journals in all psychological, social, public health, and medical fields, and several high-​profile research groups from all over the world are now investigating these relationships. (vii) Christina Puchalski, the director of The George Washington University Institute for Spirituality and Health (GWish),2 and Betty Ferrell, who was identified as one of “30 Visionaries” by the American Academy of Hospice and Palliative Medicine, write in their book, Making Health Care Whole: Integrating Spirituality into Patient Care (2010), Research in palliative care has demonstrated the impact of religious and spiritual beliefs on people’s moral decision making, way of life, interactions with others, life choices, and ability to transcend suffering to deal with life’s challenges … The notion that spirituality is central to the dying person is well recognized by many experts, the most of important being those patients who are seriously ill. (4) Research on religion and spirituality in health care has primarily focused on the patient perspective, investigating how these aspects of a person’s life should be integrated into the health services they receive in order to provide more whole-​person care (Balboni and Peteet 2017; Cobb, Puchalski, Rumbold 2014). Benjamin Frush, John Brewer Eberly, and Farr Curlin (2018) explore what to do when physicians care for a patient who believes they should experience sometimes extreme discomfort because of what their religion teaches them about pain. Frush, Eberly, and Curlin (2018) suggest, “physicians should maintain their commitment to the patient’s health while making room for religiously informed understandings of suffering and respecting the patient’s authority to refuse medically indicated interventions” (613). This is sometimes difficult to do, as physicians should also remain committed to providing high-​quality, ethical care while accommodating patients’ wishes. Puchalski notes that religion and spirituality are connected to “better healthcare outcomes,” such as lower rates of depression and better recovery from surgery; a “greater quality of life with patients with advanced disease;” lower stress shown through “changes in area of brain associated with stress/​

78 Experiences emotions;” and greater “resiliency.”3 Religion and spirituality are often associated with end-​of-​life care, as decisions about death and dying may be guided by a person’s religious beliefs. Five Wishes is a short book produced by the non-​profit organization Aging with Dignity that was often distributed to patients by the care team at the hospital. It is an advance directive that walks a person through some of the main choices about treatment and comfort care (such as pain control) and allows them to document what they do and do not want, including who they want to be making health care decisions for them when they are no longer able. It is available in multiple languages. According to the website dedicated to the Five Wishes program, the book is “about connecting families, communicating with healthcare providers, and showing your community what it means to care for one another.”4 Religion is noted a few times in the book. Under the section, “What ‘Life Support’ Means to Me,” it states, “If I wish to limit the meaning of life-​support treatment because of my religious or personal beliefs, I write this limitation in the space below.” It is also mentioned under Wish 3, “My Wish for How Comfortable I Want to Be.” One of the bullet points under this section is, “I wish to have religious or spiritual readings and well-​loved poems read aloud when I am near death.” The care team gave Five Wishes to patients who were in the early stages of end-​of-​life care, when they were able to make decisions themselves and communicate with their loved ones. Oftentimes, these were patients who were unsure of their options or what they would or would not want in terms of curative treatments, life-​extending measures, and comfort care. Scholars, researchers, and medical professionals have increasingly realized that religious and spiritual beliefs of health care providers can guide the types of care they deliver to their patients and can also impact how they cope with high-​stress work environments (Yi et al. 2006). Danish Zaidi (2018), for example, notes how physicians and professors may need to take into account religion and spirituality while training future physicians. Zaidi (2018) states, “Of course, religion and spirituality are important not just to patients but also to clinicians. Respecting the background of medical trainees when navigating discussions of morally sensitive aspects of medicine can be uniquely challenging” (E609). This can be challenging to do given that medical practice in the United States is based on evidence and rigorous scientific studies. It does not always take into account the “art of medicine” (Mambu 2017). Thomas Egnew (2014) writes of this fact and how it may contradict what health care providers actually do on a daily basis: Despite enormous advances in the science of medicine, the interpersonal encounter between patient and physician remains a keystone of medical care … These interpersonal aspects of the healing enterprise can be considered the art of medicine. Most research into the art of medicine has tended to focus on theory instead of specifying how doctors should act. (25)

Muslim health care providers  79 Egnew outlines seven practices that physicians can do in order to create more meaningful and engaged relationships with their patients, which can be seen as a benefit for both parties and can possibly help prevent provider burnout. This was similarly found by Elena Salmoirago-​Blotcher et al. (2016) in their research on religion and spirituality among physicians in Emergency Medicine. They write, Both theoretical work and experimental evidence suggest that R/​S [religion/​spirituality] might mitigate burnout and promote physicians’ wellbeing. R/​S could reduce burnout by offering physicians a meaningful framework within which doctors can make sense of the stressful and dramatic events they face during the practice of medicine in emergency situations. Such meaningful framework has been only relatively recently lost in the history of medicine. Until at least the 17th century medicine and religion were closely intertwined and the roles of priests and physicians often overlapped. (Salmoirago-​Blotcher et al. 2016, 192) In a survey of primary care physicians from across the United States on factors that influenced their medical decision, such as respect for patient autonomy, following professional guidelines, and adhering to their religious beliefs, R.E. Lawrence and F.A. Curlin (2009) found that the vast majority of the 446 physicians who responded stated that religion and spirituality should be kept out of their medical recommendations given to patients. However, what Lawrence and Curlin discovered instead was that “religious doctors tended to give less weight (absolute or relative) to patient wishes. In particular, doctors with high intrinsic religious motivation were less likely than those with low to give patient’s expressed wishes the highest possible weight” (2009, 4). Likewise, Mahendr Kochar (2006), argues, “physicians must act reasonably, responsibly, and professionally and use common sense and good judgment. A  physician must not allow his or her religious beliefs to interfere with providing the best possible evidence-​based care to patients” (336). Much of the research on religion and spirituality among physicians and other health care providers, although relatively scarce compared to that focused on patients, has focused on how these aspects of their lives impact their care for patients and their well-​being; many of the studies that I have read conclude the physician participants do not see their religion or spiritual beliefs to be part of their medical decision-​making and the options they give to patients; however, much less of this research has focused on how the care that they do provide, particularly to very sick or dying patients, impacts their faith and the ways that they believe, or causes them to re-​interpret sacred texts. This chapter focuses on Muslim health care providers like Dr.  Idrisi who cared for patients nearing the end-​of-​life and who died in the hospital. I  agree with the research that demonstrates there are multiple factors (e.g., personal values, professional guidelines and standards, institutional policies,

80 Experiences cultural expectations) that guide health care providers’ decision-​making and recommendations, but rather than only exploring how the services they provide to their dying patients are reflective of their religious beliefs, I examine how the care they offered also shaped their faith and interpretations of Islam as well as their identities as Muslims in the United States. What I am most interested in highlighting is how their tending to a human body that is dying shapes their religious beliefs and Muslim identities. For me, this process is not just one way, but the changes to the body that take place during the dying process, the interactions with the patient’s loved ones and family, and the care that they provide to the patient can inform their faith and religious identities. Take Dr. Idrisi, for example. Dr. Idrisi approached all of his patients in the same way, whether they identified as Muslim or not. He was respectful of their wishes; however, as I will discuss later, on some occasions he disagreed with the choices that families were making about end-​of-​life care for their loved ones because he believed they may have crossed the line ethically. These choices challenged his clinical ethics, but also his values and morals as a human being. I could tell that he viewed all of his patients’ lives as having great value. Life for Dr. Idrisi was sacred and the elderly and dying in particular were to be respected, as Islam teaches. However, at the same time, I would argue that his experience at the hospital as a physician who is called to see the sickest of the sick, those who will pass away perhaps in a matter of days rather than months or years, also informed his religious understandings and identity as a Muslim. To highlight this cyclical process, each of the remaining sections of this chapter will focus on a particular Muslim physician with whom I worked over the course of my fieldwork. Some of these physicians I have highlighted already in the book and others will be introduced for the first time. At different points of their stories, I will tack back to the first and second chapters to highlight how some of their beliefs and practices intersect with how the US health care system approaches end-​of-​life care generally and the more dominant Islamic discourses in the United States about illness and death.

Dr. Nasr: Responsibility and judgment I was referred to Dr. Nasr by the medical director of the care team. She said that he was known at the hospital as one of the Muslim physicians who was willing to discuss options with Muslim patients and families from an Islamic perspective. This was like the case of Ali, as another non-​Muslim physician had requested that Dr. Idrisi see his father and speak to Ali and his brother about options. Dr. Nasr has been asked to be a mediator for Muslim patients outside of his department because sometimes non-​Muslim physicians may be unsure of or uncomfortable with cultural and religious differences. Dr. Nasr and I met one day in his office at the hospital. He attended medical school in his home country and then completed his internship, residency, and fellowship in the United States. At the time we met, he was the medical director for one of the transplant programs. Dr.  Nasr had worked for

Muslim health care providers  81 the health care organization that runs the hospital since 2002. In the transplant program, he works with some of the “sickest of the sick” patients, as he explained it to me when I asked about the patients he typically sees. For this program, the hospital does about 25 transplants a year. Patients are referred to him by other physicians in the area, mostly those who are in primary care. Because he is in one of the transplant programs, they are not only from the DC region, but they come from neighboring states on the East Coast as well. However, he did say that he would estimate 70 percent of the patients his program sees are from the DMV (District of Columbia, Maryland, and Virginia). Dr.  Nasr said that if he was in a general practice that he would see more Muslim patients on a regular basis. He practiced medicine overseas for a time after he completed medical school. I asked him what he thought about how end-​of-​life care is generally approached in the United States, and more specifically at this hospital, compared to his time practicing in his home country. He responded that, overall, it is “pretty good.” What he appreciates at this particular hospital is that all patients are considered to be equal and have access to quality care. The hospital provides charity care. The amount of money provided for each qualifying patient is determined by the administration. The medical director of the care team was unsure of how exactly they set the particular amount. She explained that physicians and providers do not make this determination, as the patient or their family must prove they would be unable to pay for the services needed. This may be due to lower-​income and/​or extraordinarily high medical bills. I asked Dr.  Nasr to talk about some of the more common concerns about care expressed to him by the Muslim patients that he has treated. He explained that it really depends on how long they have been in the United States if they were born abroad and how “Americanized” they are. He said that Muslim patients, in his experience, take more time at the hospital and more time to decide about practices, which was slightly contradictory to what I was told by imams, who argued for patients to be cared for at home as soon as it is considered safe for them to leave the hospital. They are not to linger at the hospital, using resources that must be shared with other patients who are ill or dying. Similar to Dr. Mir, Dr. Nasr found that Muslim patients in his transplant program will consult with their families more often than those who do not identify as Muslim and they require more explanation from him as a physician—​this could be because he has to explain the diagnosis and options to multiple family members and not all at the same time. Basem Attum, Abdul Waheed, and Zafar Shamoon (2020) in their discussions of cultural and religious considerations among Muslim patients, state, The family unit, rather than the individual, is the core of the community … The extended family is often consulted in all important decisions. The cultural values of the individual, family, and relatives all have an impact on the assessment of patients’ needs, as well as on the delivery of medical care.5

82 Experiences Their observation coupled with Dr. Nasr’s experience with Muslim patients and their families also challenges the significance and the assumed universal definition of patient autonomy in the US health care system. In addition, Dr. Nasr explained that many Muslim patients and families that he sees understand that the life span is fixed and acknowledge that death will happen no matter what their decisions are about care. He suggested that they know there are treatments available, like a transplant, although not everyone may be able to access them for a number of reasons. However, Muslim patients and families also see the cure as ultimately being from Allah and even with treatment options, the patient’s health may not improve, which Dr. Nasr stated changes the ways that they approach care. In his approach to medicine and to caring for the very sick patients that he sees on a regular basis, regardless of religious affiliation, Dr. Nasr takes great responsibility and exercises caution. He told me that he does believe these aspects of his approach comes from the fact that he is Muslim. He believes that life is fixed and that he is answerable to God. He is salaried at the hospital, so he does not have to take on a large number of patients. He can give those that he does see his undivided attention. This was unlike the care team members I  worked with, whose bonuses and salaries were connected to measures like length of stay. He also stated that when he is asked to do something by the hospital administration that he does not think is ethical, he will automatically decline rather than try to find another solution or a compromise. During our discussion, he also mentioned that he tends to leave people on a ventilator a little longer than his non-​Muslim colleagues and he does not rush people to make decisions about removing a family member from life support. I found that Dr. Nasr used his religious beliefs to guide his decisions about what is right and wrong in his medical practice. He seemed staunch in his beliefs and would not cross the line because, ultimately, he is answerable to God and needs to do what he feels is right for his patients and families so that he is not judged poorly. A fatwa issued by Shaykh Waleed Basyouni, PhD, of the Assembly of Muslim Jurists of America also addresses judgment by Allah. Here is the question that was posed by a physician: I am a doctor residing in the USA. 14 years back when I was in Pakistan, I did a job for a couple of months. I was a junior doctor, fresh out of residency, and I had a senior doctor. We used to check outdoor patients and go home around the afternoon. One day a pregnant lady came in bad condition, my senior admitted her she went home and left the patient with me. I  operated her [sic] and delivered the baby because in my opinion, this was best. I was told that doctor [sic] in emergency will take care of her now as this was the routine there. When I  came back for my next duty. I knew the patient expired. After 14 years, I am so disturbed should not have left [sic]. I repent every second. Will Allah forgive me? What if I don’t find her family?

Muslim health care providers  83 Shaykh Basyouni (from Houston, Texas) responded to the physician: based on what you said you have done what is require [sic] from you at that time and you should forgive your self [sic] and you should not feel the responsibility of the death of that woman. You can pray for her and ask Allah forgiveness for booth [sic] of you.6 Similar to Dr. Nasr, the physician was concerned about being judged poorly by Allah for what happened to the pregnant woman. Toward the end of our conversation, Dr.  Nasr talked about ruqya, or Islamic healing (Bououne 2005, Massignon 1941, Riggan 2019). Yusuf Muslim Eneborg (2013) in a study of ruqya among Bangladeshi Muslims in East London writes, A contemporary form of Islamic faith healing commonly referred to as ruqya shariya (lawful incantation) is fast gaining global popularity amongst a younger generation of Muslims and those with higher educational attainment who as a consequence are regarded as more ‘modern’ Muslims. (1080) Eneborg further notes, The “correct” form of healing associated with this revivalism or reformism is found to make abundant use of biomedical terminology and styles of diagnosis, as well as a more clear demarcation between jinn [spirit] possession and biomedical illnesses that are readily accepted as possible reasons for the ill-​health of a patient. (2013, 1082) Eneborg talks of ruqya as presenting itself as “rational and scientific” (2013, 1083), following both Islam and scientific laws, which makes it more appealing to younger Muslims around the world. He claims ruqya is an “acultural and ahistorical healing tradition by promoting the lofty claims of scientific objectivity, as well as the ideals of a puritan Islam absent of cultural trappings” (Eneborg 2013, 1083 italics in original). As we talked about ruqya, I  found that Dr. Nasr was not at all skeptical of it. Some of the physicians I worked with were cautious of healing that is outside of the biomedical model; in particular, they were quite leery of those that recommended herbs or supplements, as they may interfere with treatment, such as the drugs administered during chemotherapy. Rather, he spoke of it with great enthusiasm and said if I was interested, he would connect me with a sheikh in the local area. Unfortunately, that did not end up happening, but his offer pointed to Dr. Nasr’s interest in ruqya. He said that it is much more grounded in Islam and in the Qur’an than in beliefs about the Evil Eye, for instance. He explained that ruqya includes

84 Experiences recitation, and explained how prayer is a major part of healing in Islam, as it is in ruqya as well. While all of this was significant for Dr. Nasr, what really drew him to ruqya was that its “sole interest is in the patient.” Dr. Nasr became very animated when speaking to me about ruqya, much more so than during the rest of our interview about his work in the hospital’s transplant program. His change of tone intrigued me. It was evident that Dr. Nasr’s vested interest in his patients came from his religious values, but at the same time, I would pose that his care for the sickest of the sick—​oftentimes those who would not survive long without a transplant—​also influenced the ways he interpreted his responsibilities to others and particularly to his patients as a Muslim. His connection to ruqya seemed to be because its main interest is the patient, as compared to more typical care at the hospital where guidelines, standards, and payment also shape physician’s decision-​making and practices, which he hinted at when explaining how he was salaried and did not have to see a large number of patients each day to earn his income. Dr. Nasr stated more than once during our conversation that, as a Muslim, he will be judged by Allah one day, and, therefore, he needs to provide the best possible care to his sick and dying patients because he does not want to be judged poorly, but this did not come off as selfish or feeling as if he has to do right by his patients only so that he is not judged unfavorably. Rather, he understands that they and their families rely on him in very difficult times—​physically, mentally, and emotionally—​especially since they usually see him in the transplant program after they have exhausted all other medical options. His care for his patients’ bodies, which were breaking down and failing without a new organ, as well as their emotional and mental health, which suffered each day there was not an organ available for transplant, was something that he took on with tremendous compassion and interest because he sees himself as a Muslim to be responsible for his actions and inactions and to help others who are in need. Thalia A.  Arawi (2010) argues, “the Muslim physician who abides by the Qur’an will live a contented life, will be trusted by his/​her patients and community, and will be in line with the recently enacted Western principles of medical ethics” (111). Dr. Nasr’s focus on his patients’ bodies, daily lives, and wishes parallels the strong push for patient-​centeredness in the US health care system. For instance, he allows families to take a longer time to decide what to do next when their loved one is unable to speak for themselves while connected to life support. Furthermore, his work with extremely sick patients who are in need of a new organ to survive also reminds him of future judgment by Allah and to practice medicine accordingly because he, as a physician, is ultimately responsible to and for his patients and their families.

Dr. Bashara: The meaning of suffering I introduced Dr. Bashara in Chapter 1. He is a member of a private group of physicians who see patients at two hospitals, have an office practice, and tend

Muslim health care providers  85 to patients at three nursing homes in the local area. Dr. Bashara is relatively young for a physician. After finishing his Doctor of Medicine (MD) he held a research fellowship in the Midwest, and while there, completed his Master of Public Health (MPH). He had only been in the DC region for about a year at the time of our meeting. He said he was drawn to the region because of its proximity to Washington, DC and because of his wife’s interest in moving to the area as well. He met his wife during his first year of residency and she converted to Islam prior to their marriage. I  found Dr.  Bashara to be very calm. He had this gentle way about him that made you feel relaxed and comfortable—​a good trait for a physician who works with patients and their families during end-​of-​life care. I could tell that chose his words carefully as he spoke to me about caring for dying patients. Dr. Bashara explained that in his larger physician group, there are actually quite a few Muslim physicians. Each morning, similar to the care team at the hospital I  worked with for my research, they would divide the patients amongst themselves. He said it was “less so about being Muslim,” but “it’s more about the language.” He said he was identified as the South Asian physician and there are other Muslim physicians with different backgrounds, either being originally from another country or being born and raised in the United States to immigrant parents. The thought is that physicians are given those patients because they may be able to connect and communicate with them better. Of course, there are times the family doesn’t get along with the physician and sometimes because of their cultural wants they were starting to like each other and then all of a sudden something happens and they don’t like that physician anymore. This conflict would cause them to divide the patient list differently on any given day. He said that in some cases the physicians would be specifically called to see certain patients, while in other cases, they would switch because they felt the interactions were not going well. They did not see themselves as a good fit for the patient’s case. Dr. Bashara talked about a personal situation, a death in his own family, that helped influence how he views the relationship between Islam and scientific medicine, particularly as a physician. He told me of how he views their relationship: Yeah, it’s evolving. An evolving concept for me, because given the fact that I’ve been exposed to this kind of situation … also, way back early in my life, I had an uncle, close to me, who had a massive hemorrhagic stroke7 and was in a coma for maybe seven or eight months. His uncle’s passing occurred while Dr. Bashara was in medical school. He went on,

86 Experiences You know, this was way back in [South Asia] and I was still in medical school. Over the course of all these discussions that [my family has] had, you know the basic religious input that we got was “everything needs to be done” [to save my uncle]. The family had debated about what they believed would be the proper course of action according to Islam. The guidance they received from the religious leaders in their community encouraged them to focus on curative treatments for his uncle rather than comfort care, even though there was little chance that he would recover from his stroke. Dr. Bashara said, “The thought of withdrawal of care was almost never expressed.” As noted, his uncle remained in a coma for several months until his death. In his practice in the DC region, Dr.  Bashara has found that Muslim physicians have a different take on end-​of-​life care than his family in South Asia. He stated, “But talking to physicians here, Muslim physicians here, their concept of ‘Oh, he’s suffering in the end of life—​towards the end of life’ is a major factor.” In describing his experience with death in his family, Dr. Bashara pointed to the relative meaning of the concept of suffering. He commented that his uncle was in a coma, so he did not appear to be physically suffering to family members, such as being in intense pain, as some patients who are awake and aware of their surroundings and bodies may experience: My uncle didn’t seem to be suffering so the thought of [withdrawal] did not come up. But, my own kind of stance is maturing so to speak when it comes to end of life care. Suffering is an important part which some experience and some may not experience because they’re already in a coma. We started to talk more about how he understands suffering and how his patients and their families also view suffering. He stated, So when [suffering] comes up, then the understanding that I have is undue suffering, from the religious perspective, is when you are not going to resolve the problem or see an improvement—​no improvement in the quality or in the length of life. I asked more about this link that he raised, between a medical view of suffering and what suffering means in Islam. He talked particularly about unnecessary suffering, or when further treatment would not have any effect on the patient’s condition: “You’re not obligated religiously to continue the same course. It’s not equivalent to murder.” Prior to this part of our discussion, he brought up the case of Ali’s father, as he was involved in it for a short period of time, and was aware that Ali had been told by an imam from the local area that removing his father from life support would be considered murder by God.

Muslim health care providers  87 Dr. Bashara continued, “It’s compassion and allowing nature to take its course, right. And again, use of medication to ease that is justified, but not to hasten the process. To allow nature to take its course, but not expedite it.” He talked specifically about a case of a Catholic woman in her forties who was admitted to the hospital with cancer. It was aggressive and she had already lived much longer than doctors expected her to given her type of cancer: When they came in, the thought was that everything needs to be done. And this was the husband expressing it, “We need to take her to the ER, we need to do this.” The next day I  was anticipating the same level of aggressiveness but apparently the patient, who was awake enough now, said, “OK. This is it. It is my time.” So that was that, and the husband said that we’re not giving up, we’re not going to go home, and we’re going to pray, but she said no more of what we’re doing here. From that point, everything was reversed. Hospice was called and a DNR was instated. The patient would no longer suffer, as her cancer was to the point that nothing could be done to improve her quality of life. He mentioned this realization is not always easy. He talked about the “unease” of discussing the end-​of-​life with patients and their families because as a physician, he knows it “is inevitably going to happen soon,” maybe sooner than they had anticipated. I asked Dr. Bashara how he came to his understanding, as a Muslim and as a physician, of suffering and death. When I asked whether or not his medical training has shaped how he sees dying from a religious perspective, he responded, “Oh, yeah.” He then explained to me, Compared to say, a layperson, you know who is Muslim and who has had life experiences with family members. I  have that extra input from my [medical] practice. From seeing other patients, maybe some who were suffering and some who had gone through that phase. That definitely has given me that extra insight into [the end-​of-​life]. There is more, there is more than you know, just keeping somebody alive. Dr.  Bashara was very candid about how attending medical school and being a physician has shaped how he understands his faith and thinks of himself as a Muslim. Furthermore, tending to patients in the nursing homes, in the private practice, and in the hospital who are dying—​addressing their pain and suffering, making sure they are comfortable, and honoring their wishes for end-​of-​life care—​has also informed how and what he believes. Dr. Bashara, like other the physicians I worked with at the hospital, has a connection to the dying body—​Muslim or not—​that shaped his own faith and religious identity. As I recalled in the beginning of his story, his Muslim family in South Asia had a different view about his uncle’s condition and suffering as compared to the Muslim physicians in the United States that he

88 Experiences works with. Then, toward the end of our discussion, as Dr. Bashara opened up more about his own faith and beliefs, it became clear that his work with dying patients on a daily basis, and especially his care for their ailing bodies as a physician, was an integral part in the shaping of his Muslim identity and beliefs. I suggest that there is more to this process than Dr. Bashara just being in the hospital room with dying patients, as his family also witnessed his uncle’s decline back in South Asia. Dr. Bashara cares for the dying body as a physician and addresses the physical changes that occur during the dying process. Physicians must consider whether they should increase the amount or frequency of pain medication doses, discuss the option of a trach and PEG (percutaneous endoscopic gastrostomy), or recommend an in-​patient or home hospice.8 They also had to think about the best ways to treat other symptoms that developed during end-​of-​life care; I found the most common to be constipation and nausea. What I am trying to say is that Dr. Bashara did not just observe the patients; family members who are not health care providers are unable to actually treat their loved ones in the hospital, but certainly can be a source of comfort and support during end-​of-​life care. Physicians touched the patients as they took vitals and looked for any signs of improvement, and took on the responsibility for caring for their bodies and well-​being in the hospital. This connection—​which I  would also argue went beyond just the physical sometimes, as some physicians also expressed emotional attachment to select cases—​is what I propose truly impacted Dr. Bashara’s faith and religious identity.

Dr. Patel: Empathy and humanity I interacted with Dr. Patel a few months before I started to conduct my fieldwork at the hospital. I presented my project to a hospital committee that he sits on. Dr. Patel was one of the few people in the room who asked me specific questions and made comments about my project. (All of which were very helpful in refining my ethnographic research.) Dr. Patel was not shy during our interview, which took place in a shared office, where physicians on the floor could update patients’ charts using the available computers or make phone calls. I had to catch Dr. Patel one day when he was at the hospital and had some time to speak in between visiting patients. Dr. Patel was forthcoming about how he sees the US health care system and did not hold back his criticisms. When I  asked him how he views the approach to end-​of-​life care in the United States in general, as he has practiced in various regions as well as abroad, he responded, “We don’t have time for that. I’ll tell you right now, you and I could spend the year talking about that.” However, Dr. Patel did give me some more details: Well the truth of the matter is, end-​of-​life care in our system has been derailed by multiple forces, by too many, it’s a perfect storm. It’s the expectations of the insurance companies, the families, the government,

Muslim health care providers  89 the litigation aspect, the change in medical training and the approach of new graduates to the point where empathy is slowly eroded out of the system. His comments about empathy took me back to my conversation with Dr. Nasr and how he approached end-​of-​life care among patients who needed transplants, but were probably not going to receive them. We spoke more about some of these aspects, as Dr.  Patel stated, “I have an opinion about every one of those aspects. There’s a lot more depth there.” He compared the system in the United States to some of the other places that he has practiced. He said, And because of that exposure [to practicing abroad] I  guess I  see how everyone’s got opinions and I’ve seen it done in different areas of the world. You know people in [Europe] and [South Asia]9 were patronizing, paternalistic, they just stop life support when they feel it is appropriate, they don’t provide any mental aid. Over here, it’s like everything. Dr. Patel recalled some deaths of his family members, particularly of those individuals related to his wife: And we lost some family members, you know [my wife] lost her sister-​ in-​law recently. She was a retired nurse. My wife is always castigating me about bringing up these end-​of-​life issues with her parents and her aunts and uncles. So, everybody has an advance directive thanks to me. But his wife changed her mind after her aunt died. He recalled, When her aunt died, my wife looked at me and said, “I take back everything I  ever said to you.” Because the four children were completely bewildered. They had no idea what to do when their mother was lying there on a ventilator after CPR. His family talked, but he said usually “in my culture even with physicians and educated people, everyone doesn’t want to talk about [end-​of-​life care].” As he drew out some of the differences between how end-​of-​life care is handled in the United States and what he has experienced abroad in Europe and South Asia, he explained that in South Asia, “You could tell the family, ‘It’s over, take the ventilator, they’re gone.’ Unless the family is very rich and they could afford to keep the ventilator on and have round the clock nursing,” the average family usually agreed with the physician and withdrew the ventilator due to financial circumstances. Dr. Patel said from what he saw as a physician, “Most of the population can’t even afford to get to the ICU. Access is an issue.” He talked about his mother-​in-​law and how she cared for her mother as she was dying:

90 Experiences My mother-​in-​law said that we’ve lost some family members recently, she’s like, “You know in the old days when an older person got sick and they stopped talking and they fell asleep, and they had Alzheimer’s or dementia or something, we just stayed by them and we’d just put water in their mouth, and they died.” He jokingly asked his mother-​in-​law, who is also from South Asia, “What you just drowned them?” He continued, She said to me, “No we were trying to give them water for when they’re thirsty.” But effectively that’s what she was doing, drowning them. You know, put water in an unconscious person’s mouth. They had no idea they were drowning them, but they felt like they were meeting a need. We laughed a lot about it. I was like, “You just choked your grandma to death!” You know, they thought they were doing the best thing for that person. Several times during our interview, he talked about the importance of humanity and empathy:  “So, I  have seen all kinds of variations of how people provide end-​of-​life care, but, I think the most important thing I’m left with is the empathy and compassion that a physician can have for families.” However, today, it is much more difficult to have this compassion and take the time to get to know patients and families, according to Dr. Patel, because of the numerous external factors that dictate health care and patient-​provider encounters. He explained, “If you understand their dogma you can help them understand the medical situation, but it takes a lot of effort to sit there and understand their concern,” and physicians, unfortunately, do not always have the time or desire to do so. Dr. Patel was keenly aware of the complex relationship between religion and culture. His comments to me at the committee meeting prior to starting my fieldwork reflected this too. He said that he finds families often reflect on the question of, “How do we reconcile the dying of a family member with our religion and faith and culture?” He explained that as a physician this can take time, but time is not always on their side: “All of that has to be brought together and sometimes you have the luxury of time, but sometimes you don’t.” Over the course of our discussion, it became more obvious that Dr. Patel’s medical practice, his work with patients and families during end-​of-​life care at the hospital, has informed how he understands Islam and how he defines himself as a Muslim living in the United States, since for him, understanding religion within its context was very important to do. He stated at the hospital committee meeting that this is why he was interested in my ethnographic study, since I would not be making generalizations about Islam, but rather, trying to grasp people’s understandings of its teachings and how they impact their experiences during end-​of-​life care, especially as they interact with the health care system. Dr. Patel was against a rigid religious system. He talked

Muslim health care providers  91 about how Muslims will follow a particular imam who interprets the sacred texts in a certain way: “And they’re like, ‘No, no, death should be painful. You should not give morphine. You need to feel death. Otherwise the soul does not leave the body.’ And they preach this garbage, which is not even true.” It is not always easy to get them to see a different viewpoint, however: “We can’t disagree with them because what the preachers preach is absolute truth. It’s God’s truth, who are you to disagree? So, you’ve got to take that for what it’s worth and sort of work with it.” He likened it to some churches, “It’s kind of like the evangelical preacher’s got the attention of the entire church.” Dr. Patel’s comments about religion fall in line with Karl Marx (1982) in his Critique of Hegel’s Philosophy of Right. Dr. Patel said, “So, the only way you can get out of this is through education and emancipation of the masses.” Marx (1982) writes, Man makes religion; religion does not make man … But man is no abstract being squatting outside the world. Man is the world of man, the state, society. This state, this society, produce religion, which is an inverted world-​consciousness, because they are an inverted world … [religion] is the opium of people. (131) Marx, here, suggests that religion is dependent on economics, politics, and the social worlds in which we live. Religion is created through our interactions with our surroundings. Marx refers to religion as being “the opium of people,” meaning that it has the ability to fill a void or to dull pain, but it is not the cure for the actual ailment and can even provide you with a false sense of reality and hope. Similarly, Dr. Patel talked about the “wall of faith.” He said, So, at some point, when you’re up against the wall of faith, you’re done. You’re not going to just back off, but you let them know that you respect that. And, you tell them that you’re on their side. They need to align all the agendas. Aligning agendas is what we should be doing, instead of creating conflicting ones. Dr.  Patel did not directly state that denial is connected to having faith. He did, however, talk about how people will deny that they are dying or that death is approaching, and that sometimes those who are religious will call religious leaders, like imams. Dr. Patel stated, Most people are in shock. Like, “How could this happen? They were on dialysis and they had two bypass surgeries in the past and they had a heart valve that was failing and they had recurrent sepsis and been in and out of the ICU, and no, they hadn’t fed themselves in 6  months.” But, how did this happen? They were fine yesterday. I respond that most people are like that. And, a part of me wants to say, “Can’t you see that

92 Experiences they’ve been like dying for years and you’re like, how did this happen?” But, you know, denial has to be respected as a survival mechanism. Similar to his mentions of “education and emancipation” and moving away from religion, he also saw denial as a way to cope with a debilitating or fatal disease: Denial is what allows a cancer patient to say, “I can eat breakfast and make dinner for my kids today. Because I can’t just think about my cancer right now. I need to just put it out of my mind and deal with life.” Denial allows people to live. And people come in in complete shock because they know their family member has been doing badly but they’ve had to deny that grieving process, the painful part of facing reality to just move day-​ to-​day and hour by hour. It seems from our conversation that religion and denial are ways for people to continue living in whatever way possible, but they are not ultimately the end-​points, as death will come, sometimes sooner rather than later. When he made mention that religious leaders, such as imams, will speak with patients, he said they may not tell him for fear of judgment, “You know they have been going. You can tell because you can hear that it’s not that person talking but it’s someone else that is feeding them information.” Dr.  Patel, even though he said this in a somewhat joking manner, actually summed up his views succinctly when he stated, “So, anthropologically I guess you could look at me and say, ‘Boy, this guy has had his faith beaten out of him.’ You know, it’s probably true. I’ve been practicing this for so many years.” While he was from a Muslim-​majority country, it seemed that being a physician within the American context in particular had certainly changed the way he viewed his faith and identified with it. He said, The lack of [humanity] and in basic humanity, which is substituted by religious beliefs or guilt or anger or whatever. That is what makes my own personal belief system sort of be more of a human being then identify as belonging to a religion or faith. I suggest that his medical practice has shaped his Muslim identity (or maybe even a lack thereof) because of the structural challenges, such as insurance companies and health care policies, that make it more difficult for him to provide end-​of-​life care that is truly patient-​centered. Like Dr. Idrisi, Dr. Nasr, and Dr.  Bashara, as well as other physicians at the hospital, Dr.  Patel was most interested in making sure his dying patients are pain and symptom free and supported by their health care team. What he described to me during our discussion were times when patients and families’ interpretations of Islam, particularly when it came to death and pain, contradicted his attempt as a physician to care for his patients by making them comfortable, which for him,

Muslim health care providers  93 does not mean they are disconnected from their bodies. His desire is to make sure the patient is well taken care of and supported; however, sometimes challenges stand in the way of doing so. This comes through a story he told about a Hindu family from a few years earlier. He recalled, My children’s elementary school principal is a wonderful woman. Her mother had a stroke and had aphasia and dysphagia. She couldn’t swallow. The principal is in her 70s so her mother is really elderly. Her mom is dying and she said to me, “I don’t want her to get anything. I want her to be comfortable.” So, I  told her, “Well then, take her out of the nursing home, take her home, because the nursing home orderlies keep trying to feed her. Stop shoving food in her mouth if she’s not hungry.” Like yes, she’s dying. The mother was located in another state, but within driving distance from the local region. She explained to Dr. Patel that the nursing home staff told her that she has to allow them to feed her mother and that she cannot let her mother die. It came across as, “This daughter is trying to kill her mom,” according to Dr. Patel. He said They were giving the daughter guilt about taking her mom home. So, the daughter said, “You know what? I don’t care what you think, this is my mother and I will take care of her.” And just like I said, she took her mother home for hospice. She thanked me. She said, “I would have never brought her home without this being recommended.” I  told her, “She needs to be home with you, protecting her from all of this stuff.” Dr.  Patel was very concerned with treating the dying body with respect, honoring the patient and their wishes, and making sure that they were not in any pain or discomfort as death drew closer. For him, religion, including Islam, actually stood in the way of achieving this at times. As a physician, he valued empathy and compassion the most, which he did not see as coming from Islam, or people’s interpretations of Islam, nor did it come from their medical training. Dr. Patel did not charge that physicians were not empathetic or compassionate at heart, but instead, due to the structure of the US health care system and the approach to end-​of-​life care, many found it hard to be such providers—​the need to turn a profit prohibited them from really getting to know their patients and caring for their bodies in the way that they would want to, or should, as physicians.

Care, religion, and identity The lives and work of Dr.  Patel, along with Dr.  Idrisi, Dr.  Nasr, and Dr. Bashara, provide insight into how their faith has influenced the ways they provide care to dying patients, and more importantly, as I have tried to show

94 Experiences in this chapter, how their care for dying bodies as physicians also informs their faith and their Muslim identities within the context of the United States. The four Muslim physicians I highlighted here were either born in another country or had close family abroad. I  want to emphasize that given the US health care system is a cultural construct in itself, I believe it is important to make the statement that they received some of their medical training and currently practice in the United States. Fahad Saeed et al. (2015) found in their study of how Muslim physicians from different countries view end-​of-​life care and specifically making a patient DNR, that “country of origin, country of practice, and whether the physician had talked about comfort care with families in the past were significant determinants of belief in the validity and acceptability of DNR order” (391). What I also want to stress is that for these physicians, the changes that happened to people’s bodies as they are dying, as well as how the health care system can interfere with the care that they provide these dying bodies, impact their interpretations of Islam and also how they defined themselves as Muslims. This chapter focused on the physicians involved in end-​of-​life care and the next chapter will build on this by focusing on how the dying body—​its changes and the care that it needs—​also shaped the religious identities of Muslim family members.

Notes 1 Dr. Ghambou is a former Professor at Yale University and as of late 2019, is the Moroccan ambassador to Burundi. 2 For a message from Dr. Puchalski as Director of GWish, see: https://​smhs.gwu.edu/​ gwish/​about/​message. 3 Puchalski, Christina. 2011. “Making Healthcare Whole:  Integrating Spirituality into Patient Care,” Accessed April 1, 2020, https://​smhs.gwu.edu/​sites/​default/​files/​ Feb%202011%20Spirituality%20in%20Medicine.pdf. 4 https://​fivewishes.org/​Home 5 Attum, Basem, Abdul Waheed, and Zafar Shamoon. 2020. “Cultural Competence in the Care of Muslim Patients and Their Families.” February 17. Accessed April 4, 2020. https://​ww.ncbi.nlm.nih.gov/​books/​NBK499933/​. 6 Assembly of Muslim Jurists of America. 2011. “The Rights of the People! Fatwa ID 85909.” November 14. Accessed July 21, 2020, www.amjaonline.org/​fatwa/​en/​ 85909/​the-​rights-​of-​the-​people. 7 “A hemorrhagic stroke is bleeding (hemorrhage) that suddenly interferes with the brain’s function. This bleeding can occur either within the brain or between the brain and the skull. Hemorrhagic strokes account for about 20% of all strokes.” (Harvard Health Publishing. 2019. “Hemorrhagic Stroke:  What Is It?” February. Accessed April 14, 2020, www.health.harvard.edu/​a_​to_​z/​hemorrhagic-​stroke-​a-​to-​z). 8 A tracheostomy is placing a breathing tube through the neck and into the windpipe and a PEG is a feeding tube that goes through the skin on the abdomen into the stomach. Patients who were in a vegetative state, but were moving from the hospital to long-​term care facilities, often required a trach and PEG before transfer. 9 Dr. Patel mentioned specific countries, but to protect his privacy, I have removed their names. He did not refer to all of Europe or South Asia during our interview.

4  The Muslim child Adult children caring for dying parents

On the care team’s list one day was a 76-​year-​old Muslim patient who had returned to the hospital after being discharged. At first, she was just placed on the team’s temporary list. This means that a physician or nurse practitioner from the team would offer guidance to the attending physician as to how to address pain and symptoms. However, the physician who offered this consult said that she should be placed back on the team’s regular list so they could follow her regularly. Dr. Idrisi was to be part of an interdisciplinary family meeting that had been recently called. A critical care specialist requested the meeting. This specialist is from the Middle East, received his medical education and completed an internship and residency there, then moved to the United States for a second residency and fellowship. The reason for calling the meeting was that the family did not have a clear direction as to how they wanted to proceed with care, even though the patient had been in and out of the hospital. At this time, the patient was listed as Full Code, meaning that everything would be done to revive her if she went into cardiac arrest. This includes CPR, which sometimes can result in cracked ribs, and shocking the heart. According to Dr. Idrisi and the critical care specialist, the patient had no quality of life. She was unresponsive, and therefore, her family had to make decisions for her. One of her legs had gangrene and smelled terrible. Most of her organs were shutting down. Even with all of this, her family refused to change her code status. Her son was her primary decision-​maker and the spokesperson for the family. The physicians felt that it may be better to make her DNR, as they stated even with resuscitation, there was very little chance that she was going to recover. Her body had already started to rapidly decline. The family meeting occurred. Dr. Idrisi, a few other health care providers involved in the case, and the caseworker were physically in the room with the patient’s family and the critical care specialist was on the speaker phone. They explained to the family that it was not likely that she would ever improve. Her body did not work the way it used to. It was failing. After going around in circles, the critical care specialist spoke up. He told the son, the main decision-​ maker, that what they were doing to his mother was ethically and religiously wrong. Most likely she was going to die in the hospital, sooner rather than

96 Experiences later, while hooked up to tubes and machines, having unnecessary procedures done to her that would have little impact on her body. The son piped up to say, “We’re not religious. Don’t bring religion into this.” Dr. Idrisi told me after the care team meeting had ended that this was the first time that he had personally observed the critical care specialist speak the way he did to a family. He normally did not invoke Islam during a conversation with a Muslim patient or family about care. The specialist was very blunt and told the family that the patient was dying. What they were doing to her could not be justified in any way. Dr. Idrisi stated that, most times, he, as a Muslim physician, is able to talk about religion with a Muslim patient or family. Usually, they appreciate it. He does ask them for their permission to talk about things in religious terms. Sometimes this is helpful for them and sometimes it is not. Dr. Idrisi said he will not just start talking to them about religion, but he will ask if it is acceptable to do so. Even though they may not be what he described as “seriously religious,” the majority of the time they will say it is fine. Dr. Idrisi was actually surprised by the son’s reaction. He said that he was exhausted after the meeting. It really drained him. Even after it occurred, the family made no changes to the patient’s code status. I was able to observe the discussion about the family meeting while I  attended the care team meeting the morning after it happened. The son’s statement about religion struck me. His mother was obviously dying. You could physically tell that. There was nothing that could be medically done to reverse this even though she had been re-​admitted to the hospital. Her body was failing. Her organs were stopping. The smell of her gangrenous leg overpowered her hospital room. (Gangrene happens due to a lack of blood flow or a bacterial infection.) However, the family insisted that her body be hooked up to monitors and that she be poked and prodded by the hospital staff just doing their jobs. I thought more about the son’s statement. Perhaps the critical care specialist raised religion because he was running into dead ends with the family, which was the opposite of the “wall of faith” discussed by Dr. Patel. It did not seem they were going to change her code status even though her condition was seen as irreversible and the health care providers involved in the case made this clear to them. I also thought about how the specialist’s suggestion that what they were doing at the hospital was religiously wrong most likely was seen as a challenge to the son’s religious values and how he thinks of himself as a Muslim. Doing something ethically and morally wrong, such as putting his mother through procedures that were futile, goes against principles of compassion, letting nature take its course, and allowing Allah to decide when death should occur (all of which many of my participants discussed). Rather than not being religious at all, as the son claimed, he may have thought that the physician, who is also Muslim, although this was not revealed to the family until this meeting, was taking a stab at him as being a “good” Muslim, and in particular, a “good” Muslim son. Lionel Cantú (2003) suggests that identity should be “understood not only as a social construction but also as being fluid—​that is, constructed and

The Muslim child  97 reconstructed depending upon social location and political economic context” (261). This approach enables “the intersections of multiple marginal positions and positions of power” to become “visible” (Anzaldúa 1987 cited in Cantú 2003, 261).1 The son stated that they were not religious, but if analyzing this within the framework provided by Cantù, I might also suggest that this was an example of how identity is “constructed and reconstructed” given the context in which the conversation took place. Dr. Patel said in our conversation, as we were discussing end-​of-​life care among Muslim patients that he has seen at the hospital, There is a group of people today, under the current political climate, who are feeling very vulnerable. They’re going to be very defensive coming into this system. So, to assume that doesn’t interfere with their decision-​ making is just crazy, right? They’re insecure. They’re scared, they come in and their family member is sick and they’re worried that nobody is going to care. The son could have been ‘defensive’ because of the American political landscape that has resulted in negative stereotypes of and discrimination against Muslims. At the same time, his religious identity and how he views himself as Muslim were challenged by another, the critical care specialist, who also identifies as Muslim. This confrontation occurred because of what his mother’s body was going through and had to endure in the hospital due to his choices about her care. Here, I also want to draw attention to the ways that Muslim identity has been written and talked about in countries like the United States, as there are both external and internal forces at play in shaping this identity. Dr.  Patel made the comment during our interview, Because of the liberal values, the progressive values in the constitution that espouses democracy is wonderful, people will still aim to come to the [United States]. The Muslim world is an example of a civilized world being held hostage by its fundamentalists. So, most Muslims are fairly reasonable people, but they’re too scared to say anything. So, they want to get out of there. His comment prompted me to think more about how Western discussions of Islam that paint the religion as being violent or against women, for instance, has informed the Muslim identities of adult children as they interacted with the health care system. “Collective guilt” may be part of this process,2 or the overall guilt felt by certain Muslims when other Muslims who may be considered extremists or more conservative, carry out particular acts, especially those that are violent, which are then covered in the media and taken up in political debates. The Qur’an reads, “Each man shall reap the fruits of his own deeds:  no soul shall bear another’s burden” (6:164). This guilt has

98 Experiences also created a “crisis of faith” (Adhami 2018) for some Muslims in the United States, which may include a movement away from their faith. Zaid Adhami (2018) writes, that a “crisis of faith” has become a pervasive preoccupation in American Muslim communities. Over the course of the last decade, American Muslim public discourse has increasingly identified doubt as a matter of urgent concern, speaking of a crisis of faith afflicting a growing number of Muslims … In fact, entire institutes and organizations have been founded that are dedicated to addressing this “crisis of faith.”3 One of the institutes created to address this crisis is the Yaqeen Institute for Islamic Research based in Texas. In Arabic, yaqeen means “certainty.” The institute’s website states, With the rise of Islamophobia on one side, and extremism on the other, Islam has been cast as irrational, incompatible with modern civilization, and inherently violent. This has put Muslims in a defensive position in which they constantly have to justify their convictions, while fighting off the natural doubts and insecurities that arise from such a climate. The Yaqeen institute was established by Dr. Omar Suleiman as a way to make academic research on Islam more accessible and to help create a “foundation of faith” for Muslim communities. In an introductory video, Dr. Suleiman states, that there are three main areas in which this foundation can be formed: “dismantling doubts,” “nurturing conviction,” and “inspiring contribution” to all of humanity: In addition to translating and analyzing classical works on the subject matter, we also aim to actively participate in the current day discourses touching on all topics that are related to establishing convictions in the hearts and minds of Muslims, and battling the false notions that underlie Islamophobia and extremism.4 I raise this point about a “crisis of faith” in relation to the son’s comment that his family is not religious when the critical care specialist questioned his decisions about his mother’s care. The specialist is embedded within the US health care system, and may be viewed by the son as a representative of the system, rather than as a fellow Muslim. The system is itself a cultural construction that some scholars argue is firmly grounded within imperialism and neo-​colonialism (Espiritu 2005, Holmes 2013). This “crisis” due to external forces could have contributed to the son’s response, as he was being challenged by someone in a system that privileges some and disadvantages others and is associated with a government that has at times failed to protect Muslims from discrimination and violence. As I previously stated, it may not be that he and

The Muslim child  99 his family are not religious, but rather, within this particular context of the conversation, it was how he identified to protect himself, and his mother, from what he may expect is coming from the specialist and the system. Yvonne Yazbeck Haddad (2011) writes of children of Arab Muslim immigrants to the United States, The new immigrants who came as adults in the 1960s with performed identities and a distinctive worldview are in the process of negotiating their identity in a hostile American environment. Increasingly, their children are reshaping them into Americans. For the children, America is the only homeland they know. They often repeat, “I want my parents’ religion but not their culture.” The parents, on the other hand, have been teaching their Arab culture as Islam, and they want to keep their children within the tradition. (95–​96) She continues that children “who grow up identifying themselves as American and Muslim are increasingly experiencing relentless prejudice and discrimination” (2011, 96). This can restrict their identity formation. Shabana Mir (2014) found in her research among Muslim American women on a college campus that their identities were informed by the ways Muslims and Islam have been thought of within American politics and the media. Mir states, “Limited choices of identity are realizable among Muslim American women in mainstream American cultural spaces … my research participants ‘did agency’ vis a vis multiple forces and centers of power. Their identity goals varied and shifted contextually” (2014, 39). Similar to Mir, I do not see the adult Muslim children with whom I interacted during my research as without agency, but rather, how they define themselves as Muslim also depends upon the circumstances that they inhabit due to broader political and social forces. It is prudent to ground an analysis of contemporary Muslim identities historically. Haddad (2011) poses, there can be little doubt of the reverberation of [September 11, 2001] in all spheres of American life in general and in the lives of Muslims and Arabs living in the United States in particular. The questions that future scholars will have to investigate include whether the attacks had a lasting impact on Arabs and Muslims and their integration and assimilation in the United States, as well as what permanent impact, if any, they will have on the unfolding of the articulation of Islam in the American public square. (1) Haddad’s claim and proposal for future scholarship intersect with Dr. Patel’s observation concerning the fear and anxiety that Muslim patients and families feel when entering the hospital regardless of whether they are

100 Experiences originally from the United States or another country. “I think Muslims are probably just scared,” he said. Krista Melanie Riley (2009) analyzed the media’s portrayals of Muslims in Canada. As Riley looked into the accumulation of cultural capital among Canadian Muslims, she discovered that there was delineation between “good” Muslims and “bad” Muslims in terms of how they practiced their religion and contributed to Canadian society. Riley attempts to explore the worlds and practices of high-​profile Muslims known to be “progressive” or “moderate” as an example of attempts to increase one’s claims to national belonging through a reification of tropes that continue to designate many Muslims as fanatical, scary and a threat to the Canadian nation. (2009, 57) It is within this context of North America, particularly after the events of September 11, 2001, in which I analyze the creation and transformation of religious identities of Muslim family members as they face the death of a loved one. While the previous chapter focused on Muslim health care providers who tend to patients during end-​of-​life care, this chapter will focus on adult Muslim children who had a parent who was dying, and in addition to their stories, I will attempt to lay out the complexities of their Muslim identities within the context of the United States and within the context of their interactions with the health care system. All of the adult children I worked with were either born in the United States to immigrant Muslim parents or came to the country as young children or young adults. Also, in this chapter, I  draw on my research with imams from local mosques who talked about how they counselled Muslim (adult) children while they cared for their aging and ailing parents and supported them as they were dying. My intention is to highlight the connections between the physical process of dying that the parent or loved one experiences and the Muslim identities of their children and family members, demonstrating how these identities and their religious values can develop or change due to the biological changes occurring within their parent’s dying body. To conceptualize care for and changes to the dying body, I draw from the trajectory framework proposed by Juliet Corbin and Anselm Strauss (1991), who argue the trajectory “is a conceptual model built around the ideas that chronic conditions have a course that varies and changes over time” (156). The course is triggered by changes in health status, but also by, relations within families and with caregivers as well as institutional factors that shape how a condition is managed. End-​of-​life care is a trajectory with people moving between stable and unstable condition before ultimately passing away. Social and structural factors intersect differently at various points on this trajectory to impact the process of dying and end-​of-​ life care. I engage with Strauss and Corbin’s model of the illness trajectory, but I  also take the trajectory one step further to suggest that how children

The Muslim child  101 and loved ones define themselves as Muslims and view their faith is hinged upon some of the more practical concerns of end-​of-​life care that they have to grapple with as their parent or loved one draws closer to death, such as providing constant care at home and payment for hospital services.

The “good” Muslim child Just like Riley (2009) found that there were conscriptions of “good” and “bad” Muslims in the Canadian media, I also found that there were conceptions of what a “good” Muslim child should be. In my research, it was not so much about the national discourses and portrayals of Islam, although these certainly provide context for the religious identity formation of my participants, but more so around how they believed they should care for their dying parent according to their understandings of Islamic principles. These conceptions of the “good” Muslim child, however, were muddled by the bureaucratic and everyday aspects of end-​of-​life care, including what will happen to and who will care for a dying patient when they leave the hospital. I also found in my research that their ideas of the “good” Muslim child sometimes changed after they faced the complicated realities of US health care system. This conception of the “good” Muslim child was noticeable in my interactions with the adult son, who I  will call Khalid, of an 86-​year-​old Muslim patient who had immigrated to the United States from the Middle East. Khalid was with his father pretty much all day and night. He was the primary caregiver even though he had several siblings. This patient’s wife was battling cancer and was at home when I first started following his case, but then a few months later had been admitted to a different hospital and died there. I first learned of his father’s case in a care team meeting on a Monday morning. His father was listed as having congestive heart failure. What was of particular interest about the case on this day was that his father was a limited DNR a few days prior, on Friday, but his chart was changed to Full Code status over the weekend. The tending physician was unsure why exactly. A few days later, the patient was still in the hospital. He had a gastrointestinal bleed and was declining, but Khalid refused to allow them to do a colonoscopy. His father was awake some of the time, but not enough to take on the decision-​ making himself. As I  accompanied the care team physician to the hospital room, I learned a little more about the case. Khalid felt guilty because they had done surgery to repair a hernia (when tissue or an organ squeezes through an abnormal opening) and he believed that is what caused the bleed. This is why he did not want to authorize a colonoscopy, but the physician tried to assure him that was not the case. I did not ask his age, but Khalid appeared to be in his 40s. He was disheveled when I first entered the room, most likely because he was the primary caregiver for his father. As the physician and I arrived at the room, he was preparing a milkshake for his father, who was sleeping at the time. Khalid told the physician that his father had slept pretty well, and we all agreed it

102 Experiences was a good thing that he was getting rest. Khalid slept on the small couch next to the window in the room. The physician talked to the son about what they would want to do if his father’s heart stopped. He said that they do not want to have CPR administered. They would want oxygen if he needed help breathing. The physician asked if this should be through a tube or mask. Khalid responded that he wanted a mask because he was afraid that the tube would hurt his father. It was clear that he was still very shaken by the hernia surgery and GI bleed. He was very concerned about the level of pain that his father was experiencing. The physician then examined his father as gently as he could, so not to disturb his sleep. This particular physician had been praised by several families for being kind, gentle, and caring. At that point, the physician left the room. I sat down with Khalid on the couch in the room as his father slept. He agreed to allow me to observe care at the hospital and to talk to me about his father’s case. His father came to the United States from the Middle East in 1969. He had always lived in the DC region. His mother, who was battling cancer at home at the time, came in 1971 with some of the children. All together they had ten children. His father’s parents had come to the United States even earlier, but his father remained in the Middle East. At first, the son talked about pragmatic religious questions about his father’s care. For example, he was unsure if all the food they served his father was halal. More significantly, a concern of the children was whether or not they could use pig tissue in his heart, as pork is considered haram in Islam and his father would not eat it. The son talked it over with his siblings and they decided that since it was near the end of their father’s life, that pig tissue would be acceptable. He stated that they based their decision to proceed mainly on the information they received from the physicians about what would happen to their father if he did not have the heart surgery. They told the family that most likely his heart would stop sooner rather than later without the procedure. This reminded me of a concern that was raised by Dr. Abbasi about the use of heparin, an injectable blood thinner, because it is pork derived. IMANA issued a statement that Muslims are permitted to use porcine heparin for three reasons: 1. Necessity makes prohibited things lawful. 2. If there are 2 evils, then you use the lesser one. In this case, the bigger evil is that not using the available heparin could lead to significant morbidity or mortality. 3. As long as there’s some modification of the original porcine product, then it’s appropriate to use.5 The looming question at the time of our discussion was what would happen to Khalid’s father once he was discharged from the hospital. He was being readied to be sent home, which would be within the next couple of days. The options were to send him to a skilled nursing facility or to his home. The family preferred home. Khalid said to me that in their culture and

The Muslim child  103 as a “Muslim son,” it was unacceptable to send parents to a nursing home because they will get lonely and their health will decline. They thought that their father would not be as active or be surrounded by his loved ones, which was important as he neared the end of life. I said to Khalid that I found it to be very admirable that he is taking care of his father the way that he does. He said that he believes since his father took care of him for many years, it was the right thing to do both culturally and religiously. At home, his family can be with his father. All of Khalid’s siblings, except for one who lives in Florida, are local. The one far away came to visit his father one time in the hospital. The other siblings typically do not come to visit. Khalid is the primary decision-​maker and caregiver for his father. The physician said that part of the reason no other children visit is that someone has to be at home to care for his wife since she is also dying. Three days later, I accompanied the physician to visit Khalid and his father again. When we first entered the room, Khalid was asleep on the couch next to the bed, but woke up to greet us. His father was awake. He seemed to be in pretty good spirits. In Arabic, he offered us tea or coffee: “turid shay, qaḥwa?” At this time, his father had been in the hospital for 14 days. This was his third hospital room during this stay. The hospital will move patients if they need space on a particular floor. The plan was to send his father home with BiPAP, Bilevel Positive Airway Pressure, which is a device that helps with breathing by helping push air into the lungs. The physician stated that Khalid had the code status changed from full to DNAR (Do Not Attempt Resuscitation) with Support because of the conversation that they had a few days before, when I was in the room. It is a limited DNR in his father’s case, which means that some life-​saving measures will be taken, such as giving oxygen through a mask, but not others. Dr. Joseph L. Breault (2011) writes of DNAR and why “language is important” when it comes to code status: The American Heart Association in 2005 moved from the traditional do not resuscitate (DNR) terminology to do not attempt resuscitation (DNAR). DNAR reduces the implication that resuscitation is likely and creates a better emotional environment to explain what the order  means. (302) Dr. Breault states in the article, “A Do Not Attempt Resuscitation (DNAR) order is given by a licensed physician or alternative authority as per local regulation, and it must be signed and dated to be valid” (2011, 302). The “with support” part of his status refers to the level of care in which there is no escalation of life support measures while continuing those measures already applied. Patients with Support Care status who require palliative procedures … can be taken to the operating room. However, major surgical or invasive procedures that

104 Experiences are unlikely to change the patient’s outcome may not be performed in Support Care patients. (Arabi, Al-​Sayyari, and Al Moamary 2018, 69) Khalid understands the severity of his father’s condition. The physician said he gets it. The physician noted that the son from Florida was making jokes and was happy while he was at the hospital. This was the opposite of Khalid who was with his father all the time. He was worn down and in need of someone to talk to besides hospital staff. The physician checked his father’s vitals and asked Khalid how he thought he was doing. His father had been complaining about his back itching, so the physician ordered Benadryl (an antihistamine). The physician said that his father would be discharged in a few days, but Khalid said that his father would be discharged that same day. He seemed optimistic, but in reality, he knew that his father’s health was poor and he could decline rapidly. They started talking about what his father would need at home, including a special bed and oxygen (the BiPAP machine). The physician recommended that Khalid talk to the case manager who would help arrange everything that his father needs. He also suggested that his father should have physical therapy. The son said that the physical therapist came two times during his father’s hospital stay, but they did not push him to do things. He wanted someone who would make his father get out of bed and walk around. The patient’s vitals were stable at this time. The physician from the hospice group was to follow up with the father at home and nurses would visit every week as well. Khalid asked the physician what exactly hospice would do for his father. The physician explained that since his father did not have symptoms, they would take care of pain mostly. He seemed to be content with this, but the physician said to me separately that it took several conversations before Khalid agreed to even have a hospice consult at the hospital. Four days later, on a Friday, the father was still in the hospital. He was to go home with oxygen and the family was trying to make arrangements to have all the equipment that was needed for his care. He did not qualify for BiPAP, meaning his insurance (Medicare/​Medicaid) did not approve the request. When the physician and I visited this day, the father was doing better. He was talking more to us, but his itching did not go away due to lying in the bed for so long. So, the physician ordered a higher dose of Benadryl for him. When I arrived at the hospital on Monday, I found that the patient had yet to go home. Over the weekend, he experienced respiratory failure. His carbon dioxide level would rise, but when the BiPAP was put on, his breathing improved. When it was taken off, he got worse. This meant that he was unable to breath on his own for a longer period of time. This was not a good sign. I was away from the hospital for two weeks over the Thanksgiving holiday. When I  returned, I  noticed the father was no longer on the care team’s list. I asked the physician who I had been shadowing if he had finally been discharged, as I know Khalid was anxiously waiting to take him home. The

The Muslim child  105 physician said that he was pushed out of the hospital because Medicare would not pay for a longer visit. The son then filed an appeal with Medicare to keep in him the hospital, but it only bought him a few days until it was denied. Many times, there were conversations among care team members about placement after discharge since patients’ insurances may not cover the care that they need or the cost of their medications. Nursing facilities do not get reimbursed enough to pay for the various medications that patients take, so they will not take some patients if they are on certain high-​cost prescriptions. In this case, the physician said that once the son realized how much would be involved in taking care of his father at home, he no longer wanted him to be released from the hospital. He became overwhelmed with all the equipment that was needed and what his father’s rapidly dying body needed, especially since he experienced respiratory failure. I was in shock. When I spoke to Khalid privately, he stressed to me that culturally and religiously they were to take care of their loved ones at home. They were to take them home from the hospital as soon as the health care providers said it was appropriate to do so. He was adamant about this during our conversation. He even said to me after our first meeting, when I said that I would be shadowing the physician as he cared for his father, that he hopefully would not see me again because his father would be sent home. So, when I heard that he filed a claim to keep his father in the hospital, I was confused. After the New Year, the father was admitted to the hospital once again. His wife died a few weeks earlier of cancer after she was admitted to another hospital. From what I gathered from the care team members who interacted with the patient and his son upon arrival, her death was uncomfortable. The care team felt that the attending physicians were “kicking the can” and asking what else could be done for the father, even though at this point, there was very little other than to control his pain. His health was declining, but Khalid did not accept this fact. He remained at the bedside of his father once again. I followed up on day 20 of this hospital stay. I was very surprised as to what I was told by the social worker on the team who had been assigned to the case. Khalid had been asked to leave the hospital and could potentially be arrested for trespassing if he returned again. The staff felt he was interfering too much in his father’s care and was combative with them. Another sibling took over his role as decision-​maker, but Khalid would regularly call him on the phone and tell him what to ask the nurses. The family micro-​managed his father’s care. The physician, who I  originally shadowed as he visited this patient, explained there were now four children involved in care. They were happy to not be part of it before and have their brother do it all, but now they did not have a choice. They took turns being at the hospital. When the attending physician talked about not intubating his father to another son, or placing a tube through the mouth into the airway so he could be placed on a ventilator, this son became very angry. The father’s kidneys were failing, but the family refused hospice now. He was BiPAP dependent, and his stats dropped even further now when he was off the mask. However, the family could not agree as

106 Experiences to a DNR, so one was not been put in place—​just a DNAR (Do Not Attempt Resuscitation) with Support. Working with the family and getting to the point of even having the father be DNAR with Support exhausted the care team’s physician. I  remember when I asked him if we could chat about the case after one of the care team meetings. His response was, “No! I’m so tired!” However, he was joking and graciously answered my questions. The patient was no longer talking, as he did when I  first started to visit him. The physician doubted that he would survive much longer. Three of the daughters who were now helping take care of their father were all in agreement that he needed hospice and comfort care. The physician told me that he heard the one daughter tell her brother who had taken over as decision maker, “Our father has suffered enough.” What was worse was that the father really enjoyed drinking coffee, but he no longer could swallow. The physician asked the nurses to dip a utensil or straw into hot coffee just to give him the flavor. The family was angry at the whole situation. They took pictures with their phones of everything, including the monitors in the hospital room, so they had documentation. They blamed the hospital for their father’s deteriorating state, and yet they continued to bring him back to the hospital rather than allowing him to die at home. A few days went by and the father died in the hospital. The family did not want the body to be moved to the morgue, so his body remained in the hospital room from the time he died in the morning until a Muslim funeral service retrieved the body in the early evening. This was a complex case with many different people involved that unfolded over a long period of time. Khalid played a key role in his father’s care. I want to return to our very first discussion when he talked to me about his father’s discharge being imminent, as in that day. He was confident that he would not see me again after our first meeting. This was not the case. He explained to me that while their religious beliefs did not directly shape the family’s decision-​ making about his father’s care, he felt that, culturally, and as a Muslim, it was his duty as a son to see that his father was well-​cared for—​preferably at home rather than in the hospital. Over the three months that I followed the case, his father was admitted to the hospital a few times, and each time his health and prognosis was a little worse. What prompted me to take a critical look at his claim of being a “good” son, both culturally and religiously, is that he filed an appeal with Medicare when it refused to pay for an extended hospital stay for his father. This made me assume that he did not want to take his father home, as he had claimed. In the care team meeting, the physician even stated that he also had heard him talk about wanting to take his father home because of his values and beliefs. This appeal was the opposite of what a Middle Eastern Muslim son should do, according to Khalid. What this case shows, I would argue, was how the physical changes in the father’s body, as his health declined pretty rapidly over the months I followed his case, meaning he would require nearly round-​the-​clock care at home (oxygen, catheter, etc.), had an influence of his understanding of what being a “good” Muslim son means. Khalid was

The Muslim child  107 already tired from being at the hospital all the time and being the primary decision-​maker had obviously taken a toll on him mentally and emotionally. It seemed that needing to care for his father’s dying body caused him to re-​ think his religious values and identity.

Dying and defining faith Dr.  Idrisi sometimes received phone calls from other physicians to see Muslim patients who were dying. He is known to be pious and able to provide guidance to patients that is grounded in Islam as well as biomedical knowledge. Dr.  Idrisi was called to see a 71-​year-​old patient who identifies as Muslim. The physician who called stated that the patient is struggling from an “Islamic point of view” as to what to do in terms of care. He is Full code and able to make his own decisions at this point. Dr. Idrisi did agree to see this patient. Sometimes, there was this assumption that Dr. Idrisi would see Muslim patients because he would have more of a connection, and while this was true, it was not always the case. An example of this is a 71-​year-​old Muslim female patient who was originally from East Africa. She had advanced dementia and was non-​responsive. The care team, when she was first admitted, did not know if she had an advance directive. However, she had no capacity to make any decisions. Her daughter, who was with her in the hospital, would be the one to make decisions for her care. She had a LACE score of 16, which means that she was at high risk for readmission within 30-​days. LACE stands for length of stay, acuity of the admission (admitted through ED or elective), co-​morbidities, and ED visits within past six months (Wang et al. 2014). A score above 9 is considered to be high risk of readmission, scores of 5–​9 are considered at moderate risk, and 0–​4 is seen as low risk. They removed 12-​abcessed teeth that developed while during her stay in a nursing facility. She had diarrhea and C. diff (Clostridium difficile).6 C. diff has been found to be associated with longer hospital stays regardless of the patient’s “risk of death”: “Hospital-​acquired C. difficile significantly and independently prolongs the duration of a patient’s stay in hospital” (Forster et al. 2012, 41). The family had been finding reasons to keep the patient in the hospital. The physician caring for her stated they are “dragging their feet” and want her to be cared for at the hospital, rather than at home. Due to her condition after being released from the nursing facility, no one wanted to send her there again. The family would not do a full DNR at that time. They insisted that she had a feeding tube placed before she went home. When I first had the chance to visit the patient and her daughter, she had been in the hospital for 27 days. I accompanied the care team physician on his morning rounds. Right outside of the room we put on special scrubs because the patient had C. diff, as you do not need to have direct contact with the patient to contract it. Once we entered the hospital room, I noticed the nurse was taking the patient’s vitals. The nurse explained that she had actually tested negative for C. diff that morning, so we did not have to wear the scrubs

108 Experiences and gloves, but we kept them on as a precaution. Her daughter was standing by her bedside hold her hand. The mother had recently removed her feeding tube and they were trying to keep her from doing it again, so the daughter remained vigilant over her mother. This was the first day since being admitted to the hospital that the mother opened her eyes and had some communication with her daughter. The physician discussed plans for discharge with the daughter who was holding her mother’s hand. There was a second daughter in the room who was sleeping on the small couch near the bed because she had been awake throughout the night, monitoring her mother. Shortly after we arrived, this daughter, who was younger than her sister, left the room. The physician introduced me to the daughter who remained in the room and I asked if I might be able to speak with her for my research. She agreed, and so I sat on a chair near the hospital bed. Her mother was breathing on her own, but she had been declared to be “actively dying.” This is how she was listed on the care team’s roster that morning. When I was able to go to her room, it was expected that she would pass away relatively soon. Her health was declining and there was little that would improve her condition, according to the physician I  shadowed. The daughter, who I will call Rahma, talked about her mother’s life in East Africa and the United States. Rahma had originally sponsored her mother to come to the United States. It took seven years for her to arrive because she and her mother had gotten lost during a violent conflict in their home country. The family was separated, and her mother ended up in another country, where she became stuck due to her immigration status and the fact that she could not return home due to the conflict. She had no source of income and was separated from her husband, who had already come to the United States with their children. The mother finally arrived in 1997. Rahma said that she has no doubt that the trauma her mother endured during this time was playing out physically within her body now. Her mother tried to commit suicide in 2007. For most of the time, the mother lived with Rahma’s brother in another state on the East Coast. Rahma felt a little guilty about bringing her mother to the DC region for treatment, where she lived with her family, but she knew her mother was not getting the care that she needed with her brother. When she arrived to the area, Rahma brought her to another hospital because she had many underlying health problems. She had a mass in her stomach that was growing in addition to dementia and diabetes. After being in that hospital for some time, she was transferred to this hospital, and then they moved her to a nursing facility. This is where she developed the abscessed-​teeth and C. diff. It was clear to Rahma that she was not getting the care in the nursing home, either. So, when she started to decline, Rahma had her transferred to this hospital once again because of the quality care that her mother received last time. Rahma had expressed that it was such a “blessing” that her mother was opening her eyes today and speaking a little bit, although it was hard for her

The Muslim child  109 to make out what she was saying exactly. A week or so before, they heard her mother mumbling in her bed. She did not move. Her body was hooked up to different monitors and she had a catheter placed. They listened closely to her, as it was very softly spoken words. They realized finally that she was praying and reciting the Qur’an. I  asked about her mother’s faith and Rahma said that she was not religious in her life before she became sick. They had no idea that she had memorized prayers from the Qur’an. Rahma said, “We are more religious than her!” The physician on the care team had said he witnessed her mother mumbling something softly when he was in her room, but did not know what she was saying. I  noticed Rahma had her phone playing something as it was sitting next to her mother’s head on the bed. She was playing a recitation of the Qur’an for her mother. What was interesting about my conversation with Rahma was that as she was talking about her mother’s faith, particularly after she became extremely sick, she tacked back to her own religious faith as a Muslim, comparing her faith and religiosity against her mother’s as she spoke, even noting that she and her sister wore a hijab and her mother never did. Rahma talked me through her mother having her feeding tube placed. She accompanied her mother as far as she could go before she had to leave her in the hands of the hospital staff to enter the operating room. The surgeon had come to visit her mother before the procedure. Before he left, he offered a prayer from the Qur’an, and Rahma was comforted knowing the surgeon was also Muslim. She told me, “I knew my mother was in good hands.” A few days later as her mother was recovering, the attending physician came to check on her during rounds. Rahma told me that she knew he was Muslim. I knew that he was, as I knew of this physician since the care team had talked about him during different cases and Dr.  Idrisi indicated that he also identified as Muslim. He was seen as being very conservative in his care; not recommending hospice or taking patients off of life support and ordering a trach and peg for patients who may not be the best candidates, but the families wanted them placed. However, I did not know how Rahma knew that he was Muslim, so I asked her. She said she knew by his last name, and she assumed correctly. Rahma was then as equally excited about having him as her mother’s attending physician, but after he started discussing next steps for care, she realized, “He’s not Muslim like me.” At this point, Rahma and her family had decided that her mother had had enough, and even though they “dragged their feet” in the recent weeks, trying to keep their mother in the hospital, they had made the decision to take their mother home with hospice. She did, in fact, leave the hospital. I asked Rahma to explain why he was not Muslim like she was. She told me that he wanted to do more tests and keep her mother in the hospital, hooked up to monitors and machines, but Rahma had said that this would only burden her mother’s body more, and that is not what she wanted to do, especially as a Muslim. Rahma and this particular physician had different religious interpretations. She found great comfort in

110 Experiences the physician whom I  shadowed, who did not identify as Muslim, as she said his recommendations were more in line with what she wanted for her mother—​religiously and morally—​and would allow her die at comfortably at home, free of pain and in a supportive environment.

When aging parents are sick or dying Adult children of aging and dying Muslim parents navigated the US health care system as well as their and their parents’ religious beliefs throughout end-​of-​life care. Sometimes they consult an outside imam or religious leader to offer religious guidance on what they should or should not do, as Ali did when he was unsure about removing his father from life support. Imam Yousef was called to provide this type of advice. He talked to me about some of the occasions in which he counselled adult children of Muslim parents who were nearing the end of life concerning what types of health services would be in line with Islam. He immigrated to the United States from the Middle East and has been the prayer leader of a vibrant, multi-​ cultural mosque in a DC suburb. Imam Yousef explained that end-​of-​life care was one of the “very prominent” concerns that he addresses as a religious leader. He mentioned “the issue of the culture clash between Muslims when they are dying or terminally ill and the American culture and what are the parameters, and how to deal with the patient.” Imam Yousef also commented that his role becomes particularly complicated when Muslims do not practice their faith: You know many Muslims are not practicing. They come here [to the U.S.] and they get lost. Some even change their names. So, these things actually put pressure on the imam because the imam later on will be required by the family to implement the Islamic laws, Shari’a, on the deceased unless the deceased has left a will or advance directive stating that “I wouldn’t like to be treated as a Muslim.” Imam Yousef was also a funeral director. Imam Yousef noted the complex environment that Muslims in the United States must navigate on a daily basis, which I suggest is only further complicated by gender, race and ethnicity, and class. He said, Unfortunately, until a very short time ago, I would say after 9/​11, Muslims were isolating themselves in the United States and they didn’t participate in anything. We started to participate after 9/​11 but we were forced to do that in order to convince people that Muslims are good, Muslims are ambassadors of peace and are all these political words you hear on TV. So, whenever any terrorist attack happens anywhere in the United States, the first people to be looked at are Muslims. They then look for an imam. They look for a religious director and so on and so forth.

The Muslim child  111 He continued, So, we started to be exposed. Before that we were not. And people, as I told you, that come from the Muslim countries who live in the United States, melt in. They melt there and some of them who even lost their Muslim identity when they came to the United States. Their Muslim identities are transformed, according to Imam Yousef, when their parents battle a terminal illness or are “actively dying” and they need to make decisions about their care as their health declines and bodies start to deteriorate. Imam Yousef brought up the differences he sees between the parents and their children. He stated, I’m confronted with the issue of the parents being first generation. They came here and they got married. Or, they got married in their home country and then they had their children here. The children grew up to be purely American and they were disconnected completely from the background and the country of their parents. And then, the parent, or one of the parents, die and they come to an imam, me, and say, “We heard that my parent was Muslim. How can we deal with that?” This means that they disconnected their kids completely from Islam. He noted that “they are Muslims but they don’t know their rights in Islam or they don’t know what they have to do as Muslims.” From his experience at the mosque, Imam Yousef found that this is a big problem for Muslims, especially those who came [to the U.S.] in the 1960s and 1970s. At that time, going to the United States was a very big dream to everyone, at least in [my home country]. But he says he has seen a shift in the faith and identity of Muslims who have immigrated to the United States in the more recent decades. He commented, So, later everything was open and people, now the new generations of immigrants, they are coming here to keep their religion. They want to keep their religion, not like the other generation that came like 30 years ago. So based on that Islam was isolated and we didn’t correlate ourselves to the health system in the United States. However, after 9/​11, Islam became exposed to everything. The mosques started to be very active and I started to receive communications from the hospitals, health institutes, as they wanted to invite me to speak about Islam. These invites were not only to educate the public about Islam and correct misconceptions about the religion but also to help Muslim patients and

112 Experiences physicians feel more included and to have their needs adequately addressed by the health care system. Imam Yousef described a shift in the religious identities of adult children of Muslim immigrants and of adult children who also immigrated to the United States when they were young. Those whose parents came in the 1960s and 1970s were raised to be “purely American,” while those whose parents came more recently, or who came recently themselves, seem to have a stronger connection to their Islamic faith, at least in what he has seen. Some children may have arrived in the United States first as young adults and then sent for their parents, as Rahma did. Moreover, Imam Yousef recalled how those children who had become “disconnected” from their faith, reconnected with Islam through end-​of-​life care for their parents and the process of dying. Many of them became more engaged with their faith, such as attending the mosque for prayers, because they realized that it was part of their parent’s life. Even if the parent was not particularly religious, or what Imam Yousef termed “secular Muslims,” the children made the connection that it was inherently part of their parent’s identity. David Unruh (1983) found that “emotional attachment of survivor to deceased may continue for long periods of time after separation through death” (340). An example of this attachment could be that being Muslim became a more central part of adult children’s identities, according to Imam Yousef, after a parent became very sick or passed away. Similarly, Ali, the young man who lost his father and spoke highly of Dr. Idrisi, expressed how his father’s illness also caused him to consider his religious identity. He connected with Dr. Idrisi because they had both grown up as Muslims and part of minority ethnic groups in the United States. Ali told me that his father asked him once, “You know, if God tested the prophesies then who am I  to not be tested?” His father did not have an advance directive outlining his wishes for care even though he had battled his illness for a number of years. Ali said that even though his father’s desires were not formally documented, “I said I knew my dad’s wishes, I knew what he would want.” Ali told me that at first a non-​Muslim physician was seeing his father at the hospital. Ali stated, So he’s like, “If I could tell you my opinion.” And I was like, “ ‘No offense, but I have completely different beliefs than you.” So, he said, “I understand.” And then he left. And then he came back five minutes later, and he told me, “I had an idea of how I can try to help you.” And that’s when he said, “You know, we have this Muslim doctor.” That is when Dr. Idrisi came to see Ali and took over care for his father as he neared his death. I asked Ali if it was important to have a physician who had a similar upbringing as him. He said, Yeah, to tell you the truth, if you came to me giving me advice I wouldn’t have listened. Even if your parents had died. You know, even if you had

The Muslim child  113 gone through the same thing where your father passed away in a very similar situation. You pulled the plug. Maybe I’d listen a little bit but then I would discard it. Ali said that Dr. Idrisi “helped a lot because he had the same look at life,” because he was a (practicing) Muslim and an ethnic minority. (Ali’s statement is because Ali and I have different backgrounds in terms of our ethnicities, religious affiliations, and families.) Ali stated outright that he had different beliefs than the original attending physician. During our interview, he recalled his discussions with different imams and how he received different religious opinions. He also talked about his discussions with Dr. Idrisi. Through all of this, it became more apparent to me that his religious identity as a Muslim American was being transformed, or perhaps solidified, due to his father’s declining health and his interactions with others about his father’s case. To interrogate the formation of Ali’s religious identity, I find it helpful to draw on Donna Haraway’s (1988) concept of “situated knowledges.” Haraway (1988) writes, “These claims are on people’s lives. I am arguing for the view from a body; always complex, contradictory, structuring, and structured body, versus the view from above, from nowhere, from simplicity” (589). My analysis here, as elsewhere in the manuscript, is informed by Haraway’s call for an examination of knowledge that is both “situated” and embodied and considers multiple perspectives, the various layers of lived realities, and the different contexts that people inhabit at once. This “view from the body” as proposed by Haraway provides me with an analytical tool to explore Ali’s religious identity as it is informed by his lived experiences, especially those related to the end-​of-​life care that his father received and his father’s death. This framing is particularly significant here given Ali talked about his “Islamic outlook to life” in combination with “growing up as a minority” in the United States. He explained that he had an “Islamic outlook to life, especially just growing up as a minority.” Aasim Padela, Katie Gunter, and Amil Killawi (2011) suggest, American Muslims may share religiously informed views on health, illness, and the healing process. For example, many aspects of healthcare may be informed by individual and personal practices of Islam—​from conceptions of disease and cure to healthcare-​seeking patterns and decision-​making. (6) They also caution, “When considering the healthcare needs of American Muslim patients, providers must be aware of the wide spectrum of adherence, religious practice, rituals, and traditions within this community” (Padela, Gunter, and Killawi 2011, 6). For Ali, life is sacred and from God: So because in life anything that is given to you is given to you by God, whether it’s hard, whether it’s bad or good. And if you think about it, the

114 Experiences way we are taught in Islam to view life is like this is temporary and it’s a test. So now think about it. You’ve been through so many tests you can’t even count. One difficult test for Ali was having to make decisions about his father given that his father was unable to speak for himself, and Ali as the oldest son, was the primary decision-​maker: I was really looking to my religion for answers and then looking too for [resources] that really helped. And I think a lot of people, they struggle with this because they don’t actually look to their religion [for help]. Maybe they, maybe they go to an imam like I went to the first one and take the absolute answer. But like, there’s so much other stuff in Islam where it’s situational. For Ali, “looking to [his] religion” was much more than seeking out guidance from a religious leader or someone you trust, it was re-​evaluating and developing his own understanding of Islam and how he saw his faith and himself as a Muslim. He came to the realization through this that Islam “is not supposed to be hard.” He stated his dad taught him that. He said that there is flexibility depending upon the situation: just make it easier on you so you can still show your faith … You know, Islam is not always about the requirements, pray five times a day, for instance. People might think it’s hard. But when you actually start, if you actually start doing it, you see that it’s sort of three minutes here, four minutes there I mean, what’s that? Furthermore, for Ali, it was also about being Muslim in addition to being a member of a minority group in the United States. I want to call attention to the fact we must also consider how religion and race and ethnicity intersected in Ali’s life and to his and his father’s interactions with the health care system, which I suggest, aided to the production (or strengthening) of his religious identity: Research has demonstrated that minority patient populations receive a lower quality of care and face significant challenges when trying to access and receive healthcare. Among racial and ethnic groups, health disparities persist due to the confluence of structural, institutional, and interpersonal factors. (Padela, Gunter, and Killawi 2011, 6) The intersection of race and ethnicity and his religion caused him to navigate different sets of expectations and pressures on a daily basis, illustrating that his religious identity is shaped by his position in US society.

The Muslim child  115

Health care, dying, and religious identity I found it significant that in the cases I observed or discussed at the hospital, there was a connection, stronger in some cases and weaker in others, between how people defined themselves as Muslims, or how central religion was to their identity, and the health care given at the hospital—​the services provided, the interactions with physicians and nurses, and the need to address very practical matters, like payment or home care. One Monday I  was riding in the elevator with the medical director of the care team. She had just come from visiting a Muslim pediatric patient.7 She had been the provider on call over the weekend. That was when she first met the patient and his family, although the 14-​year-​old boy had been in the hospital for over a week at that point. He was admitted for pain control (pain resulting from his cancer) and could not go home due to the high dose of morphine that he was receiving intravenously. He was AND/​DNR and there had been a hospice informational visit scheduled. The Children’s Oncology Group states on its website, Allowing a natural death means not interfering with the natural dying process. It also means that every effort will be made to have your child’s time of death be calm and peaceful, with you and your child surrounded by as many family and friends as you, the parents, and your child wish.8 This patient was to begin radiation soon at the hospital and the care team would continue to monitor his pain and symptoms. Even though he would begin curative treatment, there was not a guarantee that it would improve his condition, which is why they were exploring all options. His cancer was near his heart and so he could not receive high doses of radiation. It was not clear what the child or the father, who was the main spokesperson for the family, wanted in terms of care at that point. The director talked with them about the prognosis and the options available for treating pain and symptoms. The mother was present at the time and when the director got up to exit the room, she looked at her son and said, “Don’t listen to the Christian.” (This was a correct assumption about the medical director’s religious affiliation.) The director stated she was honest about the patient’s condition and spoke to him, as she wanted to know what he wanted, although given he was a minor, she also had to honor the parents’ wishes. I close this chapter with this vignette because it shows how discussions of terminal illness, pain, and death that occur among patients, families, and providers inform and are informed by a person’s faith. The mother made a very clear distinction between herself and her son and the care team’s director in terms of religion, which the director hypothesized could have been because she was honest with them about the severity of the son’s condition and what could be feasibly done to help him. This also echoes Padela, Gunter, and Killawi’s (2011) suggestion that Islam can influence how Muslim Americans think about illness and treatment. I used patient cases from the hospital in

116 Experiences this chapter to show how interactions with the health care system in combination with the changes that occur to do the dying body, and family members’ relationships to this dying body, can shape Muslim identities and religiosity. I have tried to further demonstrate that religious identities are not static nor are they isolated from other aspects of people’s lives, such as race and ethnicity as in the case of Ali or the need to devote time and energy to caring for a dying father at home, as in Khalid’s case. While this chapter has centered mostly on the care received at the hospital and in medical settings, the next chapter focuses more so on death itself, the final moments of biological life, and what happens to the dead body.

Notes 1 I would like to thank Ray LeBlanc for pointing me toward Cantú’s analysis of identity. 2 Adhami, Zaid. 2020. “To Reform or Decolonize the Mind? Islamophobia, American Muslims, and the Dilemmas of Double Consciousness.” Ali Vural Ak Center for Global Islamic Studies Virtual Guest Lecture. Fairfax, VA, April 30. 3 Adhami, Zaid. 2018. “The Crisis of Faith in American Islam:  Between Personal Experience and Authority.” Maydan, July 25. Accessed April 30, 2020, https://​ themaydan.com/​ 2 018/​ 0 7/​ c risis-​ f aith-​ a merican-​ i slam-​ p ersonal-​ e xperience-​ authority/​. 4 https://​yaqeeninstitute.org/​about-​us/​our-​mission/​ 5 Kantorovich, Alexander. 2016. “Should Bovine Heparin Reenter the US Market?” Pharmacy Times, June 22. Accessed July 23, 2020, www.pharmacytimes.com/​ contributor/​ a lexander-​ k antorovich-​ p harmd- ​ b cps/ ​ 2 016/ ​ 0 6/ ​ s hould- ​ b ovine-​ heparin-​reenter-​the-​us-​market. 6 For more on C. diff please see: www.mayoclinic.org/​diseases-​conditions/​c-​difficile/​ symptoms-​causes/​syc-​20351691. 7 My IRB protocol did not permit me to observe pediatric cases or to talk with the pediatric patients or their families. I was, however, able to ask health care providers about such cases. So, in this manuscript, there are a few places where I talk about pediatric patients, but I had no direct contact with them during my fieldwork at the hospital due to ethical concerns. 8 https://​ c hildrensoncologygroup.org/​ i ndex.php/​ g rieving-​ a nd-​ p alliative-​ c are/​ dnrdniand

5  Death The dead Muslim body and connections to identity

Ahmed’s wife (first introduced in Chapter 2) was actively dying. She did not have much time to live. When her case was first discussed at the care team meeting, she had been in the hospital for six days and was Full Code. She had advanced cancer that had spread throughout her body. Ahmed was by her side at the hospital day and night and her oldest brother was flying in from another state. The patient and her husband are originally from West Africa and identify as Muslim. Ahmed said that out of respect for her family, he wanted to wait until her brother arrived to make any decisions about code status or treatment. At that point, the family wanted everything to be done to save her. However, they needed to decrease the medications she was receiving because her blood pressure was dropping. She had been on opioids for pain control. At home, she was trying to control the pain with over-​the-​ counter medications, but that was not really helping her. Her husband said that once she started receiving higher doses of prescription pain medications at the hospital intravenously, he could tell that her whole body just relaxed. The pain had overtaken her body, even though she tried not to let it show. Because of the spread of her cancer, she was going through liver failure and was jaundiced, meaning her skin and the whites of her eyes turned yellow because of too much bilirubin, which is what carries oxygen in red blood cells. Red blood cells are broken down by the liver, but if the liver cannot handle this due to failure or other reasons, bilirubin collects thus causing a person to appear yellow (it is common in newborns particularly those who are born prior to 38 weeks).1 While jaundice does not normally require treatment in adults (or infants), in the case of Ahmed’s wife, it was an indication that her liver was, in fact, failing. Ahmed’s wife was sleeping all the time. The family was somewhat thankful for this because they believed it meant that the medication was helping relieve her pain. Ahmed explained that before being admitted to the hospital, he could tell she was physically uncomfortable because she was very restless. The family, especially their children, saw this as a glimmer of hope rather than the fact that she was actively dying. However, Ahmed told the care team that he knew she was dying. He agreed with the suggestion that she receive hospice care at a facility or home, so she is comfortable until she passes.

118 Experiences I first heard of her case on a Wednesday. When I  attended the care team meeting on Friday of the same week, Ahmed’s wife was still in the hospital. The physician who cared for her on the team was surprised that she had not passed away yet. He did not expect her to live more than a day or so. Within those two days, her code status was changed to DNAR with Support. Ahmed and his family were clear that they did not want her to be intubated, but other measures to make sure she was comfortable and pain free could be taken. It seemed that they had come to accept that her condition was dire, and she was not going to improve, hence the change in status from Full Code to DNAR. At the same time, the addition of support care allowed them to hang on to the hope that she may improve, even if it would be miraculous according to her providers. That Friday in the care team meeting, I learned that Ahmed and his wife’s oldest daughter from a previous marriage were by the bedside and her older brother would be arriving later in the day. The chaplain stated that they have both Muslim and Christian support. She was able to pray with them, which they enjoyed because she was praying to God and not to something or someone else. (One imam explained to me that if a Muslim physician is not available, then it is best to go to another “believer,” such as a Christian, since they are both monotheistic faiths and have the same God.) The care team physician stated that he heard from the nurses on the floor that there were “rituals” or “ceremonies” happening in her hospital room. They described it as an activity to “rid the woman’s body of spirits.” West African women in the local community had been providing the family with support and had come to visit Ahmed’s wife in the hospital room—​this I  mentioned earlier in the ethnography as they had to limit the number of people in the room because it became too hard for the staff to do their jobs. The physician said the nurses were “entertained,” but yet unsure of what was happening because there were screams and other loud noises coming from the room. When they went to check on Ahmed’s wife, he assured them that everything was fine. Ahmed knew that his wife was actively dying. Her family knew that she was actively dying, but Ahmed would not talk about it in the room with the physician. He did not want to speak about her dying in front of her children or the visitors. Ahmed and his wife had a teenager and a child who was in college, and the patient had two children from her first marriage. The physician said that they all understood that her condition was worsening by the minute, even though they did not say it outright. The family continued to hold out to make any final decisions about her care until her brother arrived at the hospital. One of the social workers on the care team had visited Ahmed. She said that he was more concerned about how he was going to take care of their younger child by himself. He was very anxious about doing it alone without his wife. Ahmed himself works in health care and was well aware of his wife’s condition. He was supportive of her care and generally in agreement with the health care providers. After the team meeting, I  had the opportunity to speak with Ahmed. I went with the physician to his wife’s hospital room. Since he did not want

Death  119 to talk about his wife’s imminent death in front of her children, we decided to speak in a nearby conference room instead. Ahmed told me that he had come to the United States in 1991. In his home country in West Africa, he attended a Catholic school where he was baptized, but he identifies as Muslim and was raised a Muslim. He said that he only attended the Catholic school because that is where you received the best education. Because of this, he was familiar with Christianity and had read the Bible several times while in school. In 2012, his wife travelled back to their home country after living in the United States for some time. Ahmed’s wife worked in health care too. When she returned to the US after her visit home, they discovered a mass, which turned out to be breast cancer. She had surgery. Then in 2014, she underwent a double mastectomy and pursued radiation. However, shortly after, they learned that the cancer had spread to other parts of her body. Surgery was no longer an option because of how widespread the cancer had become. Ahmed spoke fondly of his wife and said that she was one of the strongest women that he had ever met. Ahmed’s wife was raised Muslim, but her first husband was Christian. The family believed strongly in prayer. He said that for them, it did not matter what religion people identified as, but as long as they prayed to the same God, they were appreciative of the support they offered while his wife was in the hospital. This was partly due to the fact that both of them had been exposed to Christianity: Ahmed through schooling and his wife through her first husband. I asked Ahmed how he had come to the decision to allow his wife to receive only comfort care and to the realization that she was, in fact, dying. He responded that he believed everything was God’s will and in God’s hands. He, of course, did not want his wife to leave him, but he accepted it because he believed that she would go with God and God would take care of her. This was comforting for him to know. When I  asked Ahmed about the healing ritual that the nurses had mentioned, he stated that it was “just prayer” done by women who had come to the hospital to support his wife. When I arrived, there were two women in the room who were not related to the patient, but from their community. Her two children from her previous marriage were both there along with Ahmed. Ahmed was more willing to speak to me about his wife’s condition outside of her hospital room, as he did not want to do it in front of the children or visitors. After a while, I could tell that he was becoming anxious and wanted to get back to his wife, so we wrapped up our conversation and he returned to her room to be by her side. When I returned to the hospital early the next week, I learned that Ahmed’s wife passed away not 24 hours after I was able to speak with him and visit with her. I was with them early Friday afternoon and she died early Saturday morning in the hospital bed surrounded by her family. Ahmed did not want to talk about his wife’s impending death in front of others, but it seemed to me that he, along with the older children, had come to accept it. Sherine Hamdy (2012) in her ethnography on organ transplants in Egypt writes of “the idea that organ transplantation is forbidden or sinful in religion because God is all

120 Experiences powerful and owns everything” (138). Hamdy poses that the “statement that our bodies belong to God has been richly (re)interpreted as it has circulated in the experiences and imaginations of those immediately involved with kidney transplantation in Egypt” (2012, 138). Kiarash Aramesh also notes, According to the Islamic view, the body, like the soul, is a “gift” from God; therefore, man does not possess absolute ownership on his body. But, the ownership of human beings on their bodies can be described as a kind of “stewardship.” (Sachedina 2009 cited in 2009, 3) Ahmed had come to accept that his wife was dying due to his belief that God is the one who created the human body and determines what will happen to it. He believed that there was nothing he could do on Earth to save his wife at this point, as it was all up to God now, so he was fine with her receiving only comfort care. Neither the physicians nor the technologies available at the hospital could save her, either. While this was scary for Ahmed, and caused him sadness, it was also comforting. Ahmed witnessed how his wife’s body relaxed when she started on pain medication at the hospital and he recognized that she was much more comfortable than she had been at home, where she tried to work and to live her “normal” life despite being in pain. Similar to Hamdy, I  learned that my Muslim participants generally believed that “our bodies belong to God” and furthermore, their belief was “(re)interpreted” (Hamdy 2012, 138) and rearticulated as they interacted with health care providers, the health care system itself, and the dying body. For many, this meant changing a code status (from full to DNR or AND, for instance) and requesting that their loved one be transitioned to comfort care rather than curative treatment. The previous chapters in this Part of the book focused on care for the dying body. I gave particular attention to the physical and biological changes that occurred in the dying body and how these changes connect to the creation or transformation of religious identities of those providing care to the body. This chapter shifts focus to the final moments of biological life. I explore how Muslims actually prepared for the death of their loved one and then handled the death. I heard of various issues during my time at the hospital, such as the challenges that sometimes come with a Muslim burial due to hospital and state regulations. These issues are not unique to my field site. An article that appeared in the Yale Daily News in 2019 talked about how “secular regulations hinder Muslim burial practices in Connecticut.” Washing of the dead body, a “prominent requirement”2 in Islam, can be difficult to do if death takes place in the hospital. Additionally, burial is to take place within 24 hours of death: “the 24-​hour burial is not in the Qur’an but is a cultural practice from the faith’s desire to respect the body and to avoid decay.”3 (Meryem, the volunteer Muslim chaplain at the hospital, prayed with patients and families for cleanliness.) The swiftness of burial surfaced in the death of Muammar Gaddafi

Death  121 in Libya in October 2011. A BBC article reported, “Five days after his death, Muammar Gaddafi has been buried at a secret location in the Libyan desert, say officials.” His body was displayed to the public in an industrial freezer to prove that he was, in fact, dead, alongside the dead body of his son Mutassim Gaddafi. The article continues, There are regional variations on the interpretation of Islamic law concerning burials but some fundamental principles apply. A person must be buried as soon as possible after death, says Imam Dr. Abduljalil Sajid, chairman for the Muslim Council for Religious and Racial Harmony in the UK. This is usually no more than 24 hours later. The reason for speedy burials partially stems from days when hygiene wasn’t at its best, Dr Sajid says. It was a way to protect the living from any sanitary issues.4 An autopsy was originally to be performed to confirm Gaddafi’s cause of death before his body was returned to his family to be buried, but the autopsy was prohibited by the semi-​autonomous council of Misrata, a district in northwest Libya that borders Sirte, where Gaddafi was born. This veto was issued in order to allow the burial at an unmarked location in the desert to take place quicker. Muslim burial practices have become even more complicated in 2020, as the world battles the pandemic of COVID-​19. In New York City, an epicenter of the outbreak in the United States, many traditional Muslim practices have been upended during the COVID-​19 crisis:  families cannot be with a sick loved-​one because the illness is so contagious and most hospitals have strict visitation rules in place, and public gatherings have been restricted, too.5 Social distancing guidelines and restrictions on public outings put in place by local authorities to contain the transmission of the disease have caused funeral practices to be altered, “As a result, the Muslim community—​like other religious groups across the United States—​has had to adapt to meet public health recommendations designed to reduce the potential spread of the coronavirus.”6 Sometimes, Muslim burial practices had to be altered or adapted prior to the global pandemic due to health care rules and policies at the local, state, and national levels, but this was only heightened and made more complex during the outbreak of COVID-​19. Due to reporting requirements of state health departments and regulations imposed by hospitals and other facilities in the United States, burial within a day may be a challenge: “Burial within 24 hours is almost always requested so requires advance planning in completion of the death certificate, identification of a transport company, and a funeral home that can respond soon after death” (Leong et al. 2016, 772). In the remaining sections of this chapter, I will focus on how death—​especially the last moments leading up to this biological

122 Experiences end of life and those immediately following the end—​highlight the complex ways that religious beliefs and the health care system—​its rules, policies, and approaches to end-​of-​life care—​interact in everyday life. In addition, I  will attempt to situate Muslim patients and families’ decisions concerning death and burial within larger societal forces and movements, particularly those surrounding race and ethnicity and immigration, as well as public discourses and debates, especially about religion. In my analysis, I  draw on the work of Saba Mahmood (2005) on women’s piety, agency, and social and political movements in Egypt. Following Mahmood’s approach, I focus on the practice and its relationship to the body and Muslim identity. Mahmood (2005) writes, One may argue, however, that the significance of an embodied practice is not exhausted by its ability to function as an index of social and class status or a group’s ideological habitus. The specificity of a bodily practice is also interesting for the kind of relationship it presupposes to the act it constitutes wherein an analysis of the particular form that the body takes might transform our conceptual understanding of the act itself. Furthermore, bodily behavior does not simply stand in a relationship of meaning to self and society, but it also endows the self with certain kinds of capacities that provide the substance from which the world is acted upon. Mahmood gives attention to the everyday practices of women and their impacts on conduct and the creation of a self and identity. In her discussion of veiling, she recalls how some of her participants offered a critique of “Islamic practices whose raison d’être is to signal an identity or tradition,” as this did not capture how these very practices—​done because “that is what Muslims do” (Mahmood 2005, 51)—​produced a particular kind self and articulated a form of women’s agency. In the United States, John O’Brien (2019) found that young Muslim teenage boys would couch their religious participation within traditional American values, such as individualism and self-​responsibility, to make them seem more acceptable. These teenagers often faced practical situations of cultural tension in their everyday lives. The cause of this tension did not lie in any inherent or fundamental incompatibility between Islamic and American youth cultures, but rather in the way that particular elements associated with each culture were often treated as fundamentally incompatible. (O’Brien 2019, 7, italics in original) Building on frameworks from Mahmood and O’Brien, I view the practices surrounding death and the dead body as more than just practices done in the name of Islam—​for instance, burying the dead quickly because that is what they are to do as Muslims—​but also as a way to explore how Muslim identities are created against the back drop of American cultural values as

Death  123 espoused through the health care system. I will draw on my observations and my participants’ accounts, as well as those I  have gathered through online means, to show how the preparation for death and the treatment of the dead body prompted some Muslims to re-​evaluate their faith and their belonging to the Muslim community and in the United States, and caused others to solidify their religious identities, as they navigated the challenges and hurdles posed by the US health care system.

The timing of death As I briefly recalled in the introduction, at the care team meeting one morning, the medical director discussed an older Muslim male patient she had seen the previous day. He was “actively dying” and the family had accepted that he would pass away soon. When she walked into the room for the first time, she noticed that he had a Qur’an on top of his chest. There were many family members in the room at the time. She asked if they would like an imam to come to the hospital, but they declined and said they were “doing the prayers themselves.” The patient had a breathing and feeding tube, which were placed at another hospital before he was transferred to a skilled nursing facility. He crashed there and was down for about 10 minutes. He was transferred to this hospital, and since then, he has declined. The family had come to realize that there was nothing that they could do, nor that the hospital staff could do, to reverse his condition. They had chosen to take him off the ventilator, which was scheduled for just a few hours after the care team meeting. The family was ready for him to pass away and mentally and emotionally prepared for it to happen. They requested that they wanted to be there when he died. The family did not have an urge to take him home to pass away, but rather, preferred that they come to the hospital when the physician removed him from life support. What was striking was that there was a set time for withdrawal, but this does not mean that the patient would die immediately. This family wanted withdrawal to be timed so that they could be with him in the hospital when he took his last breath. They did not want an imam to visit the patient, but wanted one of the members to be there at the bedside to recite the Holy Qur’an. Mohamed Tayeb et  al. (2010) conducted a study that explored what a “good death” means for Muslim patients, families, and health care providers. They used 12 principles of a “good death” outlined in the final report The Future of Health and Care of Older People (TFHCOP) as a basis for their research. They state, Most of the conducted studies examined the concept of good death in elderly whites, but no comparable qualitative data exist regarding other races … The purpose of this study was to review the TFHCOP perception of good death to determine its validity for Muslim patients and health care providers and to identify and describe other elements for a good death. (Tayeb et al. 2010, 215–​216)

124 Experiences Tayeb et al. found that the timing of death (Principle 1 “To know when death is coming, and to understand what can be expected”) was not as important for their Muslim participants as other principles from TFHCOP and additional factors gleaned from their research, owing to the idea that “Muslims believe that it is impossible to tell the item or place of death by any means and that it is only known by Allah Almighty who predetermines the exact timing and place of death” (Tayeb et al. 2010, 219), something I also found in my research and Hamdy (2012) discovered in her fieldwork on organ transplants in Egypt. However, they did state that participants said they would like to have a “death alarm” so that they can ask God for forgiveness and make up for the sins they have committed. A.R. Gatrad (1994) states, “[Muslims] believe in the day of judgment and the life hereafter, and that on approaching one’s death it is important to ask for forgiveness of violations against humans before asking for forgiveness from God for sins committed” (521). What is significant in this case is that this family wanted to know when death would occur, as they, along with the health care team at the hospital, arranged for the patient to be removed from life support at a particular date and time. This is not to say that his death would be immediate. When patients were removed from life support at the hospital, sometimes they passed away in minutes, sometimes hours, and sometimes within a day or two. However, this did provide them with the chance to be with him in the hospital when he died and to prepare themselves for the loss that they would soon experience. At first glance, the family’s wishes counter the idea that “our bodies belong to God,” but as Hamdy (2012) shows in her work in Egypt, this statement is interpreted and re-​interpreted as it moves among people involved with the case. Here, the family had come to accept that the patient’s time to die has come, as he was not improving while on life support. He most likely could have remained on life support for days or months—​some people can be on life support for even years or decades—​but chose to have him removed, thus making his death more predictable.

Dying without pain, or a comfortable death Similar to Hamdy, as I have previously mentioned, I found that families of Muslim patients whose health was declining or who were said to be “actively dying” spoke of their loved ones’ fates as being determined by God. One Muslim patient originally from North Africa was not doing well. He laid in his hospital bed motionless and it was pretty obvious that he would never have the quality of life that he once had. His son was the decision maker, and he protected his mother from knowing how bad her husband’s condition really was. Because of this, there was not a clear direction about the patient’s care. The wife told the provider on the care team who was assigned to the patient that her husband’s life was “in God’s hands now” and it was up to God as to what will happen and when. This provider, however, was not totally convinced that she had accepted the fact that her husband would most likely die sooner

Death  125 rather than later. In another case of a 60-​something-​year-​old Muslim male patient, the wife stated that God would decide what happened to her husband, but she did not want to take him home to die. She was terrified of being the caregiver to the point that she was actually having panic attacks about the thought of him being discharged. The patient would qualify for hospice, according to the care team. He was able to speak for himself and stated that he did not want to burden his wife. Since he was still up and about, and was able to walk the halls of the hospital, he was not qualified for certain skilled nursing facilities. Their adult children wanted the patient to be at home to die, but the care team assumed that because of the wife’s response, they would not play a large role in his care. The wife was particularly scared about what would happen to her husband and his body closer to death. She was frightened by the biological changes that would occur in his body that could require her to care for him around-​the-​clock and by the thought of managing his pain as his death approaches. Sachedina (2009) writes, In Muslim communities, decisions about when to end life have not yet become a politically charged topic. The emphasis laid on the temporariness of human sojourn on earth is partly responsible for the acceptance of death as part of the divine plan for humanity. (165) He continues, “Death, then comes at the appointed time, by God’s permission. In the meantime, humans are faced with the suffering caused by illness” (Sachedina 2009, 167). Sachedina comes to the conclusion that, to an extent, physical suffering is seen as a divine test and as a way to instill humility, but human suffering is not to be extreme or to the point that a person becomes hopeless. Islam permits medical interventions to be used to alleviate suffering. Returning to the case of Ahmed’s wife, pain control was one of his main concerns. He was happy to see his wife’s body finally relax and rest once she started receiving prescription pain medication at the hospital. Ahmed did not want his wife’s death to be painful. Pain control and having a pain-​free death was a common thread that ran through many of the Muslim patient cases I observed and discussed with the care team. There were a few that countered this, though. As I mentioned in an earlier chapter, when I first started the project, the medical director noted one case she had in which a Muslim family was adamant that the patient not receive opioids for pain control, even though they could have certainly benefited from them. There was also the opposite in which Muslim patients wanted more pain medication, perhaps higher doses than should be given, but not lethal. One Muslim male patient who was in his fifties had come to the United States from Europe. He had pancreatic cancer and was starting chemotherapy. He was Full Code. The care team’s physician said that the patient was taking higher doses of opioids than he, as a physician, would have prescribed.

126 Experiences The patient would ask the attending physician for more pain medication and the physician would oblige. He was using the pain medication more so to cope with his diagnosis and treatment, but the physician hypothesized also because of the fear that he had of being in extreme pain as a result of the chemotherapy. Pancreatic cancer does not cause a person to show symptoms until a late stage and it has spread to other organs, similar to esophageal cancer, so it is often beyond curable when it is finally detected. Chemotherapy and other treatments can slow the spread and buy patients more time. The patient most likely knew this and viewed being in pain as a definitive side effect of chemotherapy. Dr. Fudadin talked about the importance of recognizing the intentions of a particular action in Islam and discussed pain medication as an example. He mentioned that the intention is what is significant in how you will be judged by God. He stated, It’s not our actions. Our actions are based on our intention. I’m sure you’ve heard of the rule of “double effect.” So, if my intention is to make you free of pain, then I will give you enough pain medicine to make you free of pain even though I know that if I give you too much medicine it could have an adverse effect in terms of stopping your breathing. But my intention is to relieve your pain, and that’s acceptable. Medication, including opioids, can be prescribed to relieve a patient’s pain, but it cannot be prescribed in a way, or taken in a way, that could cause death, even if the patient may be seen as suffering. I found that a majority of the Muslim patients and families at the hospital that I  included in my research did not have a fear of death per se, as they mostly accepted that God determines when a person dies, but rather, a fear of pain and suffering that may be involved with their death, particularly if it will take a while. For example, the wife who did not want to take her husband home to pass away, was fearful of the physical pain her husband may be in and what she would be able to do about it, as he was still able to walk and talk at that time, meaning his death could take a long time to come. A bioethicist at a university hospital explained to me that pain was an important factor when we think about what it means to have a “good death.” He stated, The disease itself makes a big difference. You know, how much pain there is, how much they can communicate, all these kinds of things. So, taking all of this into consideration, the question is, how does one go about trying to experience or create the experience of a good death? The needs of the patient are obviously the ultimate determiner. One aspect of withdrawals from life support, such as the one the medical director was involved in, was that the patient could be administered pain medication so that their death would be as comfortable as possible, given that it may not happen right after they are removed from life support. When

Death  127 withdrawal occurs, ventilators and machines helping with blood pressure and heartbeat are stopped, monitors in the room tend to be shut off, feeding tubes may be removed, and all bloodwork and other testing is ceased. The main focus of the health care providers is making sure the patient is free of discomfort and pain in their last hours or days of biological life.

Place of death and burial of the body When the medical director talked about the withdrawal of the older Muslim male patient after it had occurred, she noted that one issue the family had to deal with was what would happen to the body after death. The body would need to be washed and prepared for a Muslim burial. Imam Mahmoud, who was a chaplain at a different hospital in the region, said that he found sometimes non-​Muslim nurses and physicians were unsure of all that needed to be done to prepare a body for burial. He told me, “they may not know all the Islamic criteria for preparing a dead body … but there are some things that are cultural and there are some things that are Islamic.” The fact that this patient was removed from life support at a set time made this slightly less challenging, as they could call the funeral services ahead of time to make sure that people would be available to prepare the body.7 While a Muslim burial traditionally happens quickly, it may not be quick enough for the hospital, which will need to clean the room and prepare it for the next patient. The dead body, after it is removed from any machines, proper verification and documentation are completed, and it is prepared by hospital staff, is transferred to the morgue until the funeral arrangements are made. Hospital staff would normally clean the body before moving it to the morgue, but are typically asked not to (beyond the absolutely necessary) for Muslim patients so to allow for families, volunteers from the Muslim community, or individuals from the funeral home to wash and prepare the body for a proper burial. The medical director said she would ask if the body could remain in the room until people from the funeral home arrived, but the body may need to be moved to a different floor or even placed in the hallway, depending on the time of death. Ali did not bury his father right away either, but he did have his father’s body washed and prepared at the hospital after he died, which was shortly after he was removed from life support. Ali discussed how his father had traveled to his home country in the Middle East and it was there that he had become very ill. This was about five months before he passed away at the hospital. Ali said, So, after he left the hospital [in his home country] he had a seizure, but me and my mom weren’t there. So, I went in April. When I first saw him, his feet were bigger, then I noticed his legs were bigger and they were rock hard. Then my aunt saw him and was like, “You definitely have renal failure,” you know. So, I left [the country] but before I did, I told him, “I’ll stay, no problem. I don’t care if I work.”

128 Experiences Ali was fully employed in the DC region. Ali continued, He’s like, “No, no, no, go back.” But I said, “ ‘You have to promise that you’re going to go, starting tomorrow to get treated.” Because at one point he said, “Oh I’ll go next week,” but no. When they say your kidneys are failing you got to go now. I mean, we talked and yeah, I came back [to the United States] and all the seizures happened, so me and my mom went for a few days. His father then did return to the DC region, where he had another seizure, and after it, he was never the same again. He was not aware of his surroundings or what he was doing. The physicians would tell Ali, “Yeah, we don’t think he’s like a vegetable. We don’t think that, we’re still trying this, and if this doesn’t work, we’ve got this.” But nothing seemed to work, and his conditioned worsened to the point he needed to be put on life support for the last month of his life. Ali explained to me that he planned to take his father’s body back to his home country to be buried. Ali had already spoken to his boss about taking an extended period of leave from his job to do so. He intended to take his father’s body back to the small town where he was born and where he grew up to be buried near his parents and other family members. Ali allowed his father’s body to go to the morgue until he could make the proper travel and funeral arrangements. He chose not to have his father buried in the local area within the 24-​hour period recommended in Islam. Muslims are not to be cremated: “Muslims are buried without a coffin, never cremated … Burying the body without a coffin should be as soon after death as possible. The body is buried on the right side, facing Mecca” (Baddarni 2010, 107). Mariam Ardati, “a death doula in the Muslim community” in Australia, states, “There remains a connection between the body and soul even in death, so this is something that is quite metaphysical, and it’s a very strongly held belief.”8 Ali did not have his father buried quickly because he did not feel the religious connection here in the United States, nor did he feel the cultural connection. This also tied back to his comments about growing up as a minority in the US, as he did not always feel like he had a place to belong. He recalled, I remember in preschool one time. It was somehow Christian affiliated. So, everybody’s doing grace and I was just like, “What are you doing?” They said, “We’re praying to Jesus.” I asked, “Who’s Jesus?” Even though we believe in [Jesus], I was four years old. That’s pretty much how it all went. I went to Islamic school on the weekends up until the age of 16 or 17. That is where I learned a lot. Ali felt that as a son of an immigrant Muslim father, he had to return to his father’s place of birth in a Muslim majority country to properly honor him and to fulfill religious and cultural expectations.9 For Ali, the place of

Death  129 his father’s burial was very important, as it also had a deep connection to his own Muslim identity, which is why he did not see the need to bury his father immediately. Place also factored into how Haifa prepared for and talked about her impending death and the formation of her religious identity. Haifa was the only patient in my study at the hospital who was able to speak with me directly, although, at times, she had difficulty catching her breath due to the advanced state of her disease. Haifa had come to accept that the outlook was grim for her. She said she was “at peace with [her] diagnosis through her Muslim faith.” The chaplain on the care team told me that she was accepting of all prayers. Haifa was in her late thirties when I  first met her. She did not want to die in the United States, even though she had made a home in the country for the past several years as she completed her university and graduate studies. Rather, she wanted to return to her home country in the Middle East to die. That was her main goal when we first met: to get better and to become strong enough to make the trip. Her sister, who had never been married, had flown to the US to be with her and they were waiting for their brother, who is a physician in their home country and would fly back with Haifa, as she was not permitted to travel without a medical escort. Haifa was in the hospital for 43  days and was Full Code. She was originally admitted for dehydration and diarrhea, but had declined since. After my fieldwork at the hospital, I learned that Haifa had been able to return to the Middle East, and about six months after the last time I saw her in the hospital, she passed away. I sat down in Haifa’s hospital room one evening to speak with her, as she was feeling well enough for a conversation at that time. We managed to talk in between physician visits. They were performing their nightly rounds on her floor. I stepped out of the room for a few minutes while she spoke with one team who had stopped by to check on her. When I returned, our discussion was not so much about her disease or her death, which she knew was coming soon, but rather, we talked more about what it was like as a Muslim in the United States. Haifa explained that her declining health had caused her to reflect on the ways that she defined herself as Muslim and understood her faith, as well as on what it meant for her to also be a person from the Middle East living in the country. She was not an official citizen of the United States, but did have a visa to study. Haifa was clear that it was her Muslim faith that helped her get through this difficult time and is what caused her to accept her death. However, Haifa’s growing connection to Islam was not always in line with what she experienced at the hospital, nor was it in line with her experiences on a university campus. Similar to Ali, her religion as well as her status as an immigrant from Middle Eastern caused Haifa to not feel like she had a place to belong at times. Haifa articulated that what we may think of as “traditional” values found in American society are what prompted her to re-​evaluate her faith in order to cope with her impending death. Values such as autonomy and individualism are clearly articulated through the health care

130 Experiences system, and she had been in and out of hospitals for quite some time during the course of her disease. A 55-​year-​old male Muslim patient was admitted to the hospital with severe migraines with unknown cause, but he had Stage 4 cancer. He was Full Code. He was diagnosed in his home country in the Middle East and was receiving treatment there; however, he came to the United States, to another hospital in the region, to see a known specialist in his type of cancer. Physicians recommended that he have an MRI (Magnetic Resonance Imaging) done to rule out that his cancer had spread to his brain, thus causing the headaches, but he refused because he was convinced it would be negative. He said that if he absolutely had to have an MRI, he would need to be completely sedated, but the hospital most likely would not agree to that. That led him to refuse the MRI. He had one son in the United States. Dr. Idrisi said that the patient’s goal was to go home, but he was not sure that this would ever be a possibility. Dr. Idrisi thought the patient would need to stay at the hospital because if he left, his health would most like start to decline quickly. A few days later, the patient became confused. He did leave the hospital, but was almost immediately readmitted because his mental status and his health declined rapidly. Before, he was adamant that he was going to go back to the Middle East to become well again, but upon re-​admission, he said that he wanted to go back to his home country to die. His narrative completely changed. Dr. Idrisi stated that just a week before, he said he wanted to get better and to seek treatment, but then he just wanted to go home to die. Another week passed and the patient was still in the hospital. He finally agreed to have a lumbar puncture done.10 He wanted to be sedated during it and the providers refused at first but eventually allowed it. The results were abnormal. The physicians were trying to figure out if his results were because he had viral meningitis or partially treated bacterial meningitis. He remained Full Code. Five days later, he was discharged and all of the care team involved in his case assumed he went back to his home country to die. Likewise, Dr. Nasr talked about a transplant patient originally from the same country as this patient. He had come to the hospital for an organ transplant when he was very sick. However, his health was too poor. He ended up dying in the hospital, rather than getting the transplant. He was not to be buried in the United States, but rather his body was flown back to his home country for “proper burial.” It seemed that a “proper burial” could not take place in the US This, of course, would mean that he would not be buried within 24 hours as recommended in Islam, and his body would need to be kept in the morgue until the travel arrangements were made by his family. A guide about mourning and death among immigrants directed at health care professionals, states, Immigrants going through the bereavement process have further challenges to cope with in addition to their grief. One of the most significant is the impossibility of practicing certain significant rituals, which can

Death  131 make the mourning process even more difficult. Moreover, as migrants, they are already caught up in a series of multiple losses and bereavements (related to their new environment, cultural framework, family ties, socio-​ professional status, etc.). (Chéron-​Leboeuf et al. 2017, 7) It is certainly understandable that patients want to be buried in their home countries, if they die in another place, or that families would also want their loved ones to be buried in their countries of origin. However, I want to call attention to how the discussion of burials was framed by the participants that I  included here, especially Ali and Haifa. The quote from the guide about grief among immigrants, which was produced in Canada, points to the fact that they frequently are not only dealing with their deaths or those of loved ones, but they are also navigating many larger societal forces at the same time. Ali talked about having his father buried in the town in which he was born located in the Middle East, but it was not just that he wanted this father to rest near his family members who had already passed. Rather, it was because Ali had a stronger religious and cultural connection to it himself, presumably because it is in a Muslim majority country. Ali mentioned that it was his father who taught him about Islam and guided the development of his faith when he was younger. He said this of the Islamic school that he attended on weekends as an adolescent: “You know, they would give us homework, and we would come back from school with it, and because [my Dad] knew like everything, he would teach us.” His father was a central figure in Ali’s faith and played a significant role in the formation of his religious identity. Because of this, Ali saw a religious and cultural connection to his father’s home country, which is what prompted him to not have his father’s body buried within 24 hours after his death. Haifa expressed that she wanted to go home to the Middle East not just to see her family, especially her mother, before she died, but to also die there. This was similar to the comment made by the Muslim patient Dr. Idrisi had seen:  first he wanted to get better, but then after he knew his health was declining, he wanted to go back to the Middle East to die. Haifa expressed to me some of the challenges she faced as a Muslim in the United States and talked more generally about the challenges that Muslims and religious minorities, as well as racial and ethnic minorities, may face. She did not always feel that she was part of a community because of her religious beliefs and how they shaped the way that she lived her life, but it was her declining health and failing body that prompted her to go to her Muslim faith to cope with the fact that she was going to die soon. Haifa would still pray in her hospital room. One Friday afternoon when I visited her, I found her in her wheelchair next to her bed with her hijab, as she had just finished her prayers. Islam allows flexibility when it comes to the practice of prayers under certain circumstances, like sickness when a person needs to do them sitting down rather than standing up (Ishak and Ibrahim 2020). Similar to Ali, for Haifa, it was much more than

132 Experiences just about going home to die and to be buried. The place had a special significance within their faith and their religious identities, and they both framed it as counter to the United States.

Locating place of death and burial within the broader context Without overreaching too much, I  want to attempt to tie discussions of death and burial to some of the broader social and structural forces and to discourses about race, ethnicity, citizenship, nationality, and religion in the United States that may contribute to the formation and transformation of Muslim identities, as I believe that these also had a hand in informing Ali and Haifa’s statements and beliefs. These entanglements especially came out in a conversation I had with Imam Mahmoud, who I mentioned briefly earlier in this chapter. Imam Mahmoud is an imam in an urban center on the East Coast. He explained to me that after the death of Freddie Gray, a Black man, in 2015, he, along with other members of inter-​faith communities, took to the streets to protest police brutality and injustices against the Black community in the United States. Freddie Gray’s death was a result of a spinal cord injury that he sustained during a false arrest by six police officers in Baltimore, Maryland, on April 12, 2015. He died at the age of 25 in a hospital a week after his arrest occurred. The police officers were tried separately for Mr. Gray’s murder; one trial ended in a mistrial, three officers were acquitted, and the others had the charges against them dropped. No federal charges would be brought, but the officers would face non-​criminal trials and disciplinary hearings. The prosecutor in the case said that, while in custody, Mr. Gray had made multiple requests for an inhaler and medical attention, but these were denied by the police officers. The prosecutor also stated that his spine had been severed 80 percent at his neck.11 After Mr. Gray’s death, demonstrators [took] to the streets to protest against excessive use of force. In early days, most of the protests were calm. Many carried banners, some of which read “Black lives matter”  –​an echo of similar protests around the country in recent months.12 The demonstrations escalated with rioting and looting. Imam Mahmoud stated that he along with other members of inter-​faith organizations from the area were “heavily involved” in the protests. He said he “hit the ground running” right after Mr. Gray’s death when the protests began. They attempted to redirect the demonstrations after they intensified, trying to explain to individuals that the destruction of property was only “hurting each other.” It was not productive in getting their points across to the police and government, nor would it effect real social change. Imam Mahmoud explained that people respected him and the other inter-​faith organization members, rather than the police who had “lost control.” He felt that they did indeed listen to their pleas

Death  133 to stop the destruction and to redirect their energies into creating meaningful change in society for everyone. I was intrigued by Imam Mahmoud’s discussions of the protests during our conversation and the fight against injustices in American society. Imam Mahmoud has spoken out against hate and stressed that in Islam, as well as in other religions such as Christianity and Judaism, helping each other and showing love and compassion to all is of the utmost importance. This includes accepting refugees and immigrants in the United States, as they play a large role in American society, but unfortunately, Imam Mahmoud recognizes that because they may not act or look “American,” they may face discrimination and violence. When he talked to me about his work at the hospital as a chaplain, he stated that if staff are not familiar with Islam, they may view practices or Muslim patients and families’ decisions as “strange.” In our interview, he explained that he sees Muslims patients at the hospital who immigrated to the United States or who came to the country specifically seeking health care. But, more generally, he spoke of how Muslim patients and families sometimes just want him to come to the hospital room to pray with them. He said, Sometimes it’s just about being present. You don’t even have to say anything. Sometimes that is more comforting to people, the fact that you have an imam in the room with you, just to talk to you or just to be there for you. They would just want you to sit there for a while, so I would just sit there. So sometimes presence is all that they need. If the patient’s death is imminent, then he would make supplication (duʿā) for them and direct the people in the room what to say. From how he described this experience to me, it almost seemed like the patients and families needed an “ally” at the hospital who understood their point-​of-​view and would not raise judgment about their actions or choices. Underlying Imam Mahmoud’s comments about the protests in response to Freddie Gray’s death and about his work at the hospital as a Muslim chaplain, was the recognition that minorities in the United States—the Black community, people of color, Muslims, and non-​European immigrants, for example—​encounter injustices and biases on a regular basis. As an imam, he is a religious leader, but he only sees this as part of his role. In his role as an imam, he is to inspire people to speak out against inequalities that have become engrained in American society, to strengthen the community through helping vulnerable groups, and to encourage everyone to show kindness and grace to each other. I incorporate my interview with Imam Mahmoud here because he illuminated the broader context in which Muslims, such as Ali and Haifa, live in the United States and he highlighted how notions and discourses of race, ethnicity, citizenship, nationality, and religion tie together to inform the ways that they think of themselves as Muslim and how subsequently they live their

134 Experiences everyday lives. I pose that this entanglement in part impacted Ali’s decision to bury his father in his home country in the Middle East even though this meant not doing so quickly and influenced Haifa to be determined to return to the Middle East to die. In her ethnography of Muslim American women on college campus, Mir (2014) analyzes the Orientalist ideas that many Americans hold of Muslims and “how Orientalist images constitute a persuasive presence in Muslim American women’s own identity constructions” (3). Mir comments that “Anthropological studies of immigrants within first world contexts explore a variety of minority identity strategies” and reiterates that it is critical to acknowledge the “multi-​dimensional identities” of Muslims (2014, 4). Mir examined how Muslim American women are able to “pursue religious authenticity” while still adhering to American norms, and in doing so, points to the intersection of race and ethnicity and religion and how these often become conflated in the United States when it comes to the diverse Muslim population.13 Similar to Mir, I would argue that Ali and Haifa’s decisions and actions, and to an extent those of the other Muslim patients and families I  noted who wanted to return to their home countries to die or to be buried, were informed by the ways that Muslims are situated and identified within American society. What Imam Mahmoud brought to light was that struggles that Muslims face are similar to those struggles that Black, indigenous, and people of color in the United States also face when it comes to inequality, oppression, and violence. I certainly acknowledge that Muslims may self-​identify as both religious and racial minorities. In her work on Islamic revival in France and India within the context of the Global War on Terror, Fareen Parvez (2017) interrogates the complexities and intersections of Islamophobia and xenophobia. For instance, it was difficult to pinpoint where oppression stems from for Muslims in Lyon, located in the southeastern part of France, because about one-​third of them were French converts and, moreover, a number of the Muslims who Parvez worked with during her research were born and raised in France, but had immigrant parents or grandparents from places such as North Africa. She also discusses how class and status play important roles as well. One question she asks is, “Given this backdrop, how do Muslims, as denigrated minorities, mobilize to improve their situations through their Islamic revival?” (Parvez 2017, 2). Ali’s religious identity formed within a similar manner to what Parvez describes, as he was born in the United States to a Muslim immigrant father and his mother is White (of European descent), and converted to Islam. Growing up as part of minority groups, both religiously and ethnically, undoubtedly inflected his later decisions concerning his father’s burial in the Middle East. For Haifa, being a Muslim combined with being an immigrant was reflected in how she talked about returning to the Middle East to die, as she did not hold a strong religious or cultural connection to the United States due to the lack of a sense of belonging.

Death  135

Death, burial, and Muslim identities in the United States To wrap up this section, I want to state that I see the patients and families’ decisions to not bury a body within 24 hours of death or to die in a location outside of the United States as linked to the broader cultural and social context of American society and the ways that Muslims are located within it. I  will continue this discussion in the conclusion of this ethnography in which I also discuss how Muslims nearing the end of life could be considered to be located at the intersections of multiple, “vulnerabilities,” such as being older, being Muslim in a politically volatile time, and, in some cases, being of lower economic statuses. Unfortunately, Islamophobia and backlash against Muslim communities exist in the US, but in the conclusion, I will show that over-​stressing the role that Islam plays in my participants’ health decisions at the end-​of-​life is not productive and at times misses their real health and social needs.

Notes 1 You can read more about jaundice from the Mayo Clinic:  www.mayoclinic.org/​ diseases-​conditions/​infant-​jaundice/​symptoms-​causes/​syc-​20373865. 2 Cheang, Ko Lyn. 2019. “After Life: Muslim Deathcare in New Haven.” Yale Daily News. November 22. Accessed June 2, 2020. http://​features.yaledailynews.com/​ blog/​2019/​11/​22/​after-​life-​muslim-​deathcare-​in-​new-​haven/​. 3 Gray, Helen T. 2011. “How Different Religions Bury Their Dead.” The Wichita Eagle, May 13. Accessed June 2, 2020, www.kansas.com/​living/​religion/​article1063828.html. 4 Rahman, Rema. 2011. “Who, What, Why: What Are the Burial Customs in Islam?” BBC. October 25, Accessed June 6, 2020, www.bbc.com/​news/​magazine-​15444275. 5 Kestler-​D’Amours, Jillian. 2020. “Coronavirus: NYC Muslims Struggle to Hold Traditional Burials.” Al Jazeera April 14. Accessed June 11, 2020, www.aljazeera. com/​news/​2020/​04/​coronavirus-​nyc-​muslims-​struggle-​hold-​traditional-​burials-​ 200414163419702.html. 6 Ibid. 7 There are a few Muslim cemeteries and funeral homes in the counties surrounding DC. There are also a handful of Muslim funeral homes in Washington, DC. 8 Hegarty, Siobhan. 2020. “Coronavirus Cremations Would Be ‘Horrific’ for Muslims, but Burial Rituals Are Changing.” ABC Radio National, March 31, Accessed June 9, 2020, www.abc.net.au/​news/​2020-​04-​01/​coronavirus-​cremations-​ and-​muslim-​jewish-​death-​rites/​12105842. 9 I want to make a note here about COVID-​19 and how restrictions put in place beginning in winter/​spring 2020 to slow down the spread of the coronavirus impact how death takes place and funeral practices. This is not unique to the United States but to many countries around the world where social distancing and isolation was required to contain the outbreak. My aunt (my father’s older sister) died in April 2020. She was receiving hospice care at home in Atlanta, Georgia, and her two adult children were with her. She wished to be buried next to her husband, my

136 Experiences uncle who died in 2002, near Pittsburgh, Pennsylvania. Due to state restrictions on gatherings and social distancing requirements, a funeral could not be held as it normally would shortly after a death. She was cremated, as she desired, and her daughter took her ashes back to her home in North Carolina. When a funeral can be safely planned, she will bring her mother’s ashes to Pennsylvania and we will gather there to honor her life. This is just one example of how COVID-​19 has altered death and burial practices more generally. 10 A lumbar puncture is also called a spinal tap. A  needle is inserted in between two vertebrae to remove a sample of cerebrospinal fluid, which is the fluid that surrounds your brain and spinal cord to protect them. 11 BBC News. 2016. “Freddie Gray’s Death in Police Custody –​What We Know,” BBC, May 23, Accessed June 16, 2020, www.bbc.com/​news/​world-​us-​canada-​32400497. 12 Ibid. 13 According to the US Census Bureau, the category of White is defined as “A person having origins in any of the original peoples of Europe, the Middle East, or North Africa,” So, most likely, Ali and Haifa would have fallen into the White classification. This does not mean they would have chosen this selection or identified as White. There has been a long-​lasting movement to include the Middle East and North Africa (MENA) on the census, but the 2020 census did not include this because the bureau believed “more testing and research is needed.” See Wang, Hansi Lo. 2018. “No Middle Eastern Or North African Category On 2020 Census, Bureau Says.” January 29. Accessed June 17, 2020, www.npr.org/​2018/​01/​29/​581541111/​ no-​middle-​eastern-​or-​north-​african-​category-​on-​2020-​census-​bureau-​says.

Conclusion The important case of “a bus”—A critique and intervention

The care team was asked to see an infant who was born prematurely at the hospital. The medical director of the team did not know much about the case when she first went to the neo-​natal intensive care unit (NICU). Upon her arrival, she learned more about the infant’s condition and the parents. I was not permitted to observe patients who were infants or children at the hospital due to ethical concerns, but I was able to learn more about this case through the care team in the morning meetings and individual conversations with the medical director. I cannot lie and say that the infant’s case did not affect me at all. This infant was the youngest patient case I encountered during my fieldwork at the hospital. At times, I felt sad as well as hopeless since there was nothing that I could do given I am not a medical professional. It was difficult to hear the details being discussed in the morning meetings and to imagine what the infant and parents were going through. It certainly made me feel for them, and tested my neutrality as an ethnographer, especially because I had a toddler at home at the time and I was pregnant with my second child. The infant was born via cesarean section (c-​section) at the hospital the day before the medical director saw them.1 Their outlook was extremely poor, as they were born with what physicians believed were severe birth defects due to genetic abnormalities. The parents were from Central Asia and identified as Muslim. They arrived in the United States when the infant’s mother was in her third trimester and lived in the DC region with a distant relative, who they were not close to and they had not seen in years. The couple left their home country due to violence and poverty. The infant was listed as receiving financial assistance from the hospital. (Insurance coverage was noted for all patients listed on the care team’s roster.) The mother was also a patient at the hospital since she had given birth there via c-​section. The Newborns’ and Mothers’ Health Protection Act of 1996 (NMHPA) states that insurance carriers cannot withhold benefits for a hospital stay due to childbirth and must allow for no less than 48 hours after a vaginal delivery and 96 hours after a c-​section, which start at the time of delivery.2 The mother was officially discharged from the hospital a few days after she had given birth. She was able to visit her baby in the NICU afterward.

138 Conclusion The mother was unable to receive adequate prenatal care in her home country and so her infant’s health condition had not been discovered in utero. It was not until after the infant was born that the parents learned about the congenital disorders that would most likely prevent them from living for more than a few days or weeks. The care team was called in to make sure the infant’s symptoms and pain were controlled, as there was not much that they could do to improve the quality of life. There were no curative treatments they could offer the infant. The father split his time visiting the infant and his wife in the hospital, and then after she was discharged, they visited their newborn together. The newborn was in the NICU for more than a few days, and each day, the physicians felt it was their last. However, over the course of the infant’s stay in the hospital, the conversation turned. It was no longer focused on the infant and what could be medically done, but rather, on the parents. Again, due to ethical concerns surrounding working with minors, I was not present in the NICU, but I listened to discussions about the case in the care team’s morning meetings and talked about it with the medical director, who was tending to the infant. When the mother was discharged, she and her husband visited their newborn in the NICU and stayed for as long as they could. But then, one day, they left the NICU and did not return. When this happened, the medical director recalled that the nurses and staff in the NICU turned their attention to the parents’ religion: Islam. It was clear that they did not have a great deal of knowledge about Islam and speculated if it was something within the faith that was keeping the parents from visiting their dying infant. Did they not want to accept that their infant would likely not survive much longer? Did Islam tell them to just move on with their lives and allow others to care for their very sick child? These were the types of questions that were being asked. As the infant became sicker and it became clearer that they were not going to live much longer, these questions intensified. The focus was on religious difference. Eventually, the parents did return to visit their infant in the NICU. This case was raised at a large seminar open to the hospital staff on compassionate care and health care communication that I  attended. The care team’s medical director was also in attendance and we sat a few tables from each other, as I had the chance to sit and converse with hospital chaplains. When the conversation in the large room turned to how to address cultural differences within health care, the medical director spoke up about this case, and perhaps what went wrong. She noted that when the parents stopped visiting their infant, the staff turned their attention to their religion, rather than asking some of the more basic questions of what would prevent them from coming back to the hospital. The assumption was that the answer stemmed from Islam and cultural differences. However, once the parents returned to the NICU a few days later with their distant relative who they were living with, it came out that they just did not know how to use the public transit system to get back to the hospital. The relative worked long hours and was not available to drive them. The medical director spoke up and said

Conclusion  139 to the presenters and the audience, “It was just that they didn’t know how to get on a bus.” The parents had just arrived in the United States and spoke little English. The distant relative was not well off financially. They had little money of their own. They left their home country with only a few belongings, enough to fit in a few suitcases. It was not that they did not want to be there for their dying infant, but that they just did not know exactly how to physically get to the hospital. From what I heard during my time at the hospital, it was not uncommon for parents of infants in the NICU to leave for a few hours or even a day to return home to shower or to be with any older children, as being in the NICU can be an intensely emotional experience for parents. Lynn Doering, Debra Moser, and Kathleen Dracup (2000) found in their study that parents of infants in the NICU experienced anger, depression, and anxiety. These responses were linked to other factors, such as levels of social support and perceived control over the situation. However, this level of inquiry was not usually raised in other cases when parents left the NICU. Why was it raised in the case of these Muslim parents? Why did Islam become such focus for NICU staff ? This case has stuck with me long after I wrapped up my fieldwork at the hospital and for this project. To be honest, I  have been bothered by it and the supposition that the parents would leave their dying infant in the care of the hospital staff because of their religion. Would the reasons of a Christian couple have been questioned so strongly? As I have written this ethnography, I have often returned to a quote from Lila Abu-​Lughod (2002): “At the same time, I want to remain critical of anthropology’s complicity in the reification of cultural difference” (783). Abu-​Lughod also recalls being asked by a news reporter to provide some information for a show on Women and Islam. She writes, The questions were hopelessly general. Do Muslim women believe “x”? Are Muslim women “y? Does Islam allow “z” for women? I asked her: If you were to substitute Christian or Jewish wherever you have Muslim, would these questions make sense? (2002, 784) Keeping Abu-​Lughod’s argument in mind, I  pondered how I  could not focus solely on Islam and attribute differences in beliefs of and approaches to end-​of-​life care and death to just the religion of my participants. This case is an excellent example. The couple experienced the same problems that many people in the United States face on a regular basis, such as few financial resources and difficulties navigating public transit systems even though they may need to rely on them to get around. Their absence from the hospital had nothing to do with their religion. In the Introduction, I  alluded to the theoretical and empirical dangers of describing Muslims in the United States as being “exceptional,” a term I borrow from Peter Mandaville. In a 2017 lecture, Mandaville discussed his

140 Conclusion time serving as a Senior Advisor in the Secretary of State’s Office of Religion and Global Affairs at the State Department. He talked about a program that was being created to help Muslim entrepreneurs in the Middle East.3 When the idea was brought to him, he asked why the program was specifically targeting the development of “Muslim” entrepreneurs. Similar to Abu-​ Lughod, he responded by inquiring would the State Department create a program or dedicate funds to supporting “Christian” entrepreneurs in South America, perhaps. Why would they use “Muslim” in this instance? It makes them seem “exceptional” and requiring specific types of resources rather than true entrepreneurs. Of course, the answer to his question was, no, that the State Department would not frame a program like that if it was aimed at Christian communities. Mandaville noted in his talk that even though he was brought in to consult on programs aimed at Muslim populations in the Middle East and elsewhere in the world, he could not get behind a program targeting “Muslim” entrepreneurs and suggested they change the title and how the program was described. He commented that as someone who was supposed to be an expert on Islam, politics, and international relations, he guessed that some at the State Department were actually shocked when he suggested this revision. Building on this idea of the “exceptional,” I have two main objectives for this concluding chapter. The first is to engage with the concept of vulnerability as it applies to my research among particularly Muslim patients and their families. Referring back to examples I presented in this ethnography as well as to other sources and information, I will offer a critique of how vulnerability is usually defined and attempt to provide a more flexible and fluid definition. The second goal builds upon the first in that I want to delve more into why I chose to write this ethnography the way I did and into my framing of religious faith within end-​of-​life care in the United States. During data analysis, I struggled with how I could possibly convey all the factors that shaped my participants’ experiences stories without making Islam and being Muslim seem “exceptional.” It was not until a conversation I  had with the medical director after I had wrapped up my fieldwork that I realized I needed to write an ethnography as much about the US health care system as about Muslims’ experiences with end-​of-​life care in the United States. As I mentioned earlier in the book, I talked to her about my writing plans, and she responded with, “I like how you view death as an opening, rather than a closure.” In their meetings, the care team often talked about families needing “closure” as their loved one was dying. They were seeking some type of “closure,” whether this meant watching their loved one take their last breath, spending some time with their relative’s body after they had died, or collecting their things from the hospital room. It was at that moment that I recognized I was actually writing about how religious beliefs and identities are created or transformed through interactions with the health care system and with social and cultural factors, historical events, and national politics—​not particularly about how Islam directly influences decisions and practices about end-​of-​life care, although this

Conclusion  141 may be one part of it. This also caused me to shift my own thinking about death and dying and to focus more on the paradox of death, as I discussed in the introduction, as it is not, in fact, a passive event even though there is an end to biological life, but rather, a very productive process in which identities and beliefs are created, contested, and transformed. The end-​of-​life is not, as the medical director so rightly noted, in fact, just an end. Yes, families wanted closure, but actually, it was through the dying process and death that religious identities were produced or altered. With that said, here, I hope to offer some intervention into how religion and death are researched and written about in the future, so we do not create even more vulnerabilities for particular individuals and populations. I do not disagree that faith plays a role in health care decisions, especially during serious illness and the end-​of-​life, and I have certainly found this link in my fieldwork. However, I want to offer a caution that over-​emphasizing the role that Islam plays in my participants’ choices or behaviors—​such as the assumption that religion was the reason why the couple did not visit their infant in the NICU—​is not particularly productive and, at times, actually misses their real health and social needs and concerns.

Vulnerability Previously, I  stated that when I  first started conducting research, the medical director told me that Dr.  Idrisi usually sees the Muslim patients, since he also identified as Muslim. Dr.  Idrisi definitely saw more of the Muslim patients than the other providers on the team. Early on, one person made the comment to me that Muslim families are very insular and sometimes they do not want anyone involved in care who does not have to be. I know that the intention of the team is to provide care that is attuned with their patients’ cultural and religious beliefs and needs, but at the same time, by automatically assigning Muslim patients to the Muslim provider, without adequate recognition of the potential differences between them, the team is framing these patients as “exceptional,” as put forth by Mandaville. Even though this may be true, as imams did talk about how it is preferable for Muslim patients to see Muslim doctors, in many cases, there was not a discussion with the patients and families first about their desires or support needs. In my reading of the literature, being vulnerable has traditionally been thought of as meaning you are more prone to being in harm’s way, whether it is being more susceptible to a disease or to types of violence. Vulnerability places human bodies in the path of particular social and physical forces. It can call human survival into question because it makes us think that life could be cut short by something external to us (Butler 2015, Das 2010). This attacker could be a virus, a disaster, or another human. I draw on the work of Joan Muela Ribera and Susana Hausmann-​Muela (2011) in how I think of vulnerability. In their work, which focuses on malaria in Tanzania, they describe vulnerability as being composed of “cumulative processes” and argue that frequently

142 Conclusion “research has neglected an analysis centered on the role of accumulation” (103–​104). Instead of viewing vulnerability as being static or as a binary—​ either you are or you are not vulnerable—​Ribera and Hausmann-​Muela encourage a definition that is more open and adaptable, which investigates the “confluence of adverse circumstances” (2011, 105). I connect this definition to the work of Ada Rogers, who suggests that everyone can be vulnerable at different times in their lives. A person can be placed in a vulnerable position at some point in time or in a specific context. Rogers (1997), however, recognizes that “some individuals are more likely to develop health problems than others” (65). It is our job to examine why they are more “vulnerable” and to understand the processes that have created their positioning as such. Rogers also notes that a multitude of environmental, cultural, and social factors can simultaneously influence vulnerability, and these factors are ever changing. The dying body is an excellent image to accompany discussions of vulnerability. The dying patients’ bodies in the hospital were made vulnerable to further “attack” from their disease or other tiny organisms commonly lurking in the hospital ICUs that can make them even sicker, such as C. diff. Ahmed’s wife, for example, was “actively dying” after her long battle with cancer. She was hooked up to different machines, unable to move. Similarly, Rahma’s mother could not do anything more than open her eyes for a few seconds and softly mumble her recitations of the Qur’an. Vulnerability for them comprises compound processes built upon the entanglements of biological, physical, political, social, and economic forces. While there is a push in the United States to provide care that is culturally competent, I would argue that there is a fine line between doing so and creating a space of what Mandaville has described as “exceptionalism,” which only adds another layer to the production of vulnerability. So, while patients were made vulnerable—​in the more traditional sense of the word—​due to their physical conditions, I pose that how their cases were discussed or how they were approached by hospital staff also created vulnerabilities. Ahmed and his wife were described as being “open” to prayer from everyone regardless of their religious affiliations. The practices by large groups of people that took place in his wife’s hospital room were not faith-​based, as the nurses on the floor initially thought, but were what he described to be cultural. But, the comments about the family being “open” to prayer highlights a divide that is assumed to exist between the Muslim family and the spiritual care staff at the hospital, who are Christian. (Although there were volunteer Muslim chaplains at the hospital, none of them were on the actual hospital staff at the time I conducted my fieldwork.) Likewise, Haifa was said to be “accepting” of all prayers, regardless of the religion of the person praying for her. The care team was not sure that one Muslim patient at the hospital would be open to speaking to me for this project. As for the reason, I was just told, “Oh yes, Muslim males.” While I think the person meant that it was because I was a woman, and a non-​Muslim, how it was said made it seem as though all Muslim men felt this way about speaking to women.

Conclusion  143 Even though the intention was not to make Ahmed and his wife, Haifa, or the Muslim patient be the “Other,” how they were talked about in meetings reified the “us and them” divide as well as the seeming divide between Muslim and non-​Muslim (read: Christian) patients, with Muslim patients coming to accept the standard of (spiritual) care provided by the hospital. There was often an assumption made about Muslim patients, whether it was that they would be closed off to visits and prayers from non-​Muslims or that they would prefer to see a Muslim physician. Or, as I discussed at the beginning of this conclusion with the case of the infant in the NICU, that they would approach death in particular ways. On the one hand, Rahma, whose mother recited the Qur’an while motionless in her hospital bed, was not particularly happy with the Muslim physician attending to her mother, as she felt that his religious interpretations and values were much different from hers and her family’s. This disagreement actually only helped Rahma further define herself as Muslim. On the other, Ali was highly satisfied with the care that Dr. Idrisi provided to his father and he listened to his medical opinions due to the fact that they had similar backgrounds and upbringings. As has been masterfully demonstrated in the scholarship already, Islam is not homogenous (Deeb 2006; Johnson-​Hanks 2006) and Muslims are extremely diverse in every sense of the word. It is important not to cherish the idea that there is a coherent Islamic theology, as that it not the most productive starting point, but rather, to give greater consideration to how Muslims in the United States (and globally) come to understand Islamic tenets given their individual and community contexts. Some of the assumptions made about what type of care Muslim patients and families would want or should receive given their religion, glossed over the differences among Muslims and created “Orientalist caricatures that circumscribed their realities,” which need to be justified and explained (Jarmakani 2008, xii). In my writing I have tried to avoid re-​creating “Orientalist caricatures” that Amira Jarmakani (2008) critiques and breaks down in her historical examination of the imagery of Arab women and Islam in the West. It is for this reason that I  chose to focus more so on identity and on how people’s interactions with health care (the system as a whole as well as providers) encouraged them to re-​interpret religious principles and re-​evaluate their religious beliefs and practices. Religion can guide health care decision-​making, but this does not occur in a vacuum. Religion does so only in combination with numerous other factors that are both internal and external to the health care system.

Competencies in health care and the abandonment of culture Islam is described as being legalistic in nature. There is much literature on Islamic medical ethics; however, I  want to call attention to the “practical judgments about how to live [life] wisely and well” (Lambek 2000, 315 cited in Deeb and Harb 2013, 15–​16). Deeb and Harb (2013) point out that this “underscore[s]‌the idea of consciously trying to live a good life based on a

144 Conclusion code of conduct” and emphasizes the “socially constructed and determined values” (16). Assuming anything about Muslim patients and families during end-​of-​life care can obscure their real needs, and, as I  noted, the intentions may have been good by the health care providers, but as in the case with the infant in the NICU, the patient’s and family’s true concerns were not addressed. This most likely only created more suffering amongst the parents since they could not return to the hospital. I am a proponent of offering care that is sensitive and attuned to the patient; however, I am also cautious of the idea of cultural competency in health care. There is not a universal definition of cultural competence and the process in which it is operationalized is rather ambiguous, even though it is a buzzword in US health care (Catalano 2012). It has been a “rubric most often deployed in U.S. medical education for addressing … tension … [in] clinical encounters” (Metzl and Hansen 2014, 126) that stem from so-​called cross-​ cultural misunderstandings. Literature on culturally competent health care in the United States focuses on the need to address health disparities among racial and ethnic minorities, including how the system can provide better care to those who immigrated to the US (Good, Wilen, Hannah et al. 2011). Cultural and linguistic factors must be taken into account in order for services and treatments to be successful. Anthropologists have leveled critiques at cultural competence. Kelly Baker and Brenda Beagan (2014) observe that the concept is often reduced to only including ethnic and racial minorities, which means other groups “remain relatively invisible within medicine and other health professions” (578). Kleinman and Benson (2006) argue against how “culture” tends to be used when teaching or discussion cultural competency. They note that in health care, Culture is often made synonymous with ethnicity, nationality, and language. For example, patients of a certain ethnicity—​such as, the “Mexican patient”—​are assumed to have a core set of beliefs about illness owing to fixed ethnic traits. Cultural competency becomes a series of “do’s and don’ts” that define how to treat a patient of a given background. (Kleinman and Benson 2006, 1673) They pose that culture is seen as a skill that can be mastered by health care providers, but this is not the case given the nuances and dynamics of culture: Anthropologists emphasize that culture is not a single variable but rather comprises multiple variables, affecting all aspects of experience. Culture is inseparable from economic, political, religious, psychological, and biological conditions. Culture is a process through which ordinary activities and conditions take on an emotional tone and a moral meaning for participants. (Kleinman and Benson 2006, 1673–​1674)

Conclusion  145 Rather, Kleinman and Benson suggest, “Finding out what matters most to another person is not a technical skill. It is an elective affinity to the patient” (2006, 1676). Their observation reminds me of Dr. Patel’s comments about the importance of humanity and empathy in health care. Understanding the worldviews of patients and families can help providers offer the highest quality of care, but this takes time, and, as Dr. Patel put it, sometimes time is a luxury during the patient-​provider encounter. I would like to dwell here for a minute on cultural competency and how it is conceptualized in the United States. Given the diverse population, health administrators, policy makers, and health care providers see delivering what is considered to be culturally competent health care as key to improving health outcomes (Betancourt, Green, Carillo et al. 2003). Culturally competent care requires “a commitment from doctors and other caregivers to understand and to be responsive to different attitudes, values, verbal cues, and body language that people look for in a doctor’s office by virtue of their heritage” (Goldsmith 2000, 53). Participants in my study poignantly noted the line between religion and culture, such as Dr. Bashara who noted he is more so called in to see South Asian patients due to language and cultural connections, rather than religion. At times, there is slippage between these two domains as they are viewed as synonymous. Some, of course, may disagree. Shaiesha Moore, the author of a post on the website of the Berkley Center for Religion, Peace & World Affairs at Georgetown writes, “Islam, like Christianity and Judaism, is both a religion and culture. In Jordan, the cultural role Islam plays in society demonstrates the ability for both Christians and Muslims to identify with a common culture” (2013). Others agree that there is a distinction but yet overlaps. An article from the MINNPOST reads, As an American Muslim, when I see the issues and events about Islam that get treated as “news” in the mainstream media, it bothers me that so many are portrayed as “problems with Islam,” the religion, when they are in reality problems of culture, traditions, politics, superstitions, and tribal or ethnic codes of conduct of some Muslim-​majority region … On numerous occasions authors and “pundits” have wrongly attacked the religion of Islam for the cultural practices of Muslims in certain places in the world … There are certain areas of overlap:  A people’s religion influences their culture, and culture influences how they practice their religion. But in Islam there is a clear distinction between the two. (Saidi 2008) Meryem, a volunteer Muslim chaplain at the hospital who had converted to Islam when she met her Muslim husband, talked to me about the Muslim patients and families. Meryem believes that part of her job is to help them learn about their faith. She explained,

146 Conclusion I see my role as to sort of educate Muslims about their own religion and to help them worship appropriately. Sometimes when they’re in the hospital, they’re not quite sure what they should be doing or where they should be doing it. They’ve been raised as Muslims. Their mom will say, “This is haram. You shouldn’t do it.” But they don’t really know why they shouldn’t be doing it because they don’t study the religion that deeply. Maybe they grew up a little bit more Islamically, let’s say in Pakistan, but when their family came to the United States, they lose a lot of that because they have interfering cultural things. Meryem highlighted that religion and culture are not the same, but yet, they are intimately intertwined and have a different relationship depending on the context. She also alluded to how religion is not static. One concern raised regarding cultural competence is that we may think that all Muslim patients and families hold the same beliefs, but as I have tried to show throughout this ethnography, even though Islam may be engrained within everyday life for many, there is great diversity in terms of beliefs and interpretations due to their backgrounds, including socioeconomic status, gender, heritage, education, race and ethnicity, home country (since Islam is practiced worldwide), whether or not they were born and raised in the United States or had immigrated to the country, and their level of engagement with the health care system, just to name a few. I acknowledge that these two areas are not the same, but do pose that the concept of cultural competence within the US health care system needs to be re-​tooled to include other realms of life that are traditionally left out of it. Joseph Betancourt and colleagues (2003) write that the interactions between patients and the health care system is a key part of cultural competency: Among the many root causes of disparities that have been presented and explored, variations in patients’ health beliefs, values, preferences, and behaviors have recently garnered attention … These factors are thought to influence patient and physician decision-​making and the interactions between patients and the health care delivery system, thus contributing to health disparities. (294) They note the general and nebulous nature of the term: The movement toward cultural competence in health care has gained national attention and is now recognized by health policy makers, managed care administrators … providers, and consumers as a strategy to eliminate racial/​ethnic disparities in health and health care. There is, however, an ongoing debate as to how to better define and operationalize this critical yet broad construct. (Betancourt, Green, Carillo et al. 2003, 294)

Conclusion  147 But what we must keep in mind here, which I did not go into great detail about in the earlier chapter on the US health care system, is that cultural competence has been described as a means to increase the quality of care that patients receive, and, in addition, it can also be deployed as a business strategy for health care organizations and health care providers to attract new patient populations. Cultural competence must include much more than just matching patients and providers. As Kleinman and Benson (2006) pose, it is the basis upon which the patient–​ provider encounter can be modeled; it can almost be thought of as a methodology. I, like other scholars, see the importance of structural competency. I am not suggesting that we abandon cultural competency entirely, but rather, revise how it is conceptualized and taught to have a stronger emphasis on practice and the interactions between patient and providers. More recently, there has been a keen awareness of “the forces that influence health outcomes at levels above individual interactions” (Metzl and Hansen 2014, 126) and on the societal structures that produce and perpetuate health inequities and inequalities. The case of the infant in the NICU is an example of this slippage, in that the parents could not make their way back to the hospital due to recently immigrating to the United States and their subsequent lack of knowledge of the local public transit system, not because of their religious or cultural beliefs. Seth Holmes (2012) has written about the sociocultural factors that shape the patient-​provider encounter between health care providers in the United States and undocumented Mexican migrant patients. As I  wrote about in Chapter  2, the health care system in the United States itself is culturally constructed and values of autonomy, progress, and individualism are deeply engrained in biomedicine. Holmes demonstrates that the structure of health care and the culture of biomedicine prevent the health care providers from identifying the social determinants of health. It was much more than just language barriers between the providers and their patients. Holmes (2012) writes, “A multi-​faceted approach will be necessary to ameliorate the barriers in the clinician-​migrant patient relationship” (880). Holmes continues, “This will require taking seriously the social history, moving beyond risk behaviors to listen to migrant patients about their occupational history, living conditions, language proficiency, and other important social factors and stressors” (2012, 880). Holmes shows that providers tended to use biology and behavior as the reasons for the migrants’ pain or illnesses, rather than uncovering the structural and social factors that put them at greater risk. Similarly, I found that sometimes Islam was invoked, such as the infant in the NICU or in the case of Ahmed’s wife, as the reason for particular behaviors, rather than looking to the broader socioeconomic context in which patients and families live and the complex relationship between religion and culture. Dr. Patel, if you recall, talked about how some Muslim patients and families are “insecure” and feel “very vulnerable” given the political climate of the United States. I want to note that we must not only consider socioeconomic

148 Conclusion factors, but also the political landscape when thinking about how to offer culturally and structurally competent health care. Dr.  Patel noted that to think that the political climate does not influence their decision making about health care or practices is naïve. Here I  think about the “collective guilt”4 experienced by Muslim communities as a result of the attacks. Some of my participants, like Ali, were children when September 11 happened, but yet, the events of that day and the world’s response continues to shape their lived experiences. Dr.  Abbasi, the physician in the Midwest I  introduced in the very beginning of this ethnography, also talked about the fear and anxiety that some Muslim patients and families face, which was sometimes why they sought her out in particular. She also talked about the misconceptions of Islam that exist in places like the United States, which is in part why she created a course on Islam and Medicine for medical students and health care providers. She said, It’s so very important if people consider that Islam is a peaceful religion. The first statement one person is supposed to speak when he sees another Muslim is “As-​salamu alaykum” that means “Peace be upon you.” And then, the person says in return, “Wa ʿalaykumu s-​salam’,” which is “Peace be upon you.” I think people have misconceptions about Islam, about who Muslims are, and how it is portrayed mostly as a very violent religion. Dr. Abbasi talked a bit more about the course (or the “mini-​module” as she put it) and why she created it: People who are most learned, more knowledgeable, they can really spread the word of Islam. And there’s no prohibition. I  don’t have to go to a special school to really talk about Islam If I  learn more, learn the Qur’an, and learn what the Prophet has said and the way of his life, I  have some knowledge. I  could talk about it. I  could clarify some of the misconceptions they have. So, the course was really created for Islam and medicine to let me people know, “OK, here is the true meaning of Islam and what the basic principles are.” We believe in heaven and hell and the day of judgement and the life after death. The main focus of the life in this world is living a good life, a peaceful life, one that contributes towards the wellness of people, of human beings. Help people have a better quality of life and not to hurt people. When I interviewed Imam Yousef, I was reminded of Dr. Abbasi’s words about her course, as he talked about how after September 11, Muslims were forced to be in the public and to clarify the public’s misunderstandings of their religion. They needed to engage with society more so than Muslim communities may had done in the past. As I have stated previously, it is common to find that being Muslim is conflated with race and ethnicity, but

Conclusion  149 no racial or ethnic group makes up a majority of Muslim American adults. A plurality (41%) are white, a category that includes those who describe their race as Arab, Middle Eastern, Persian/​Iranian or in a variety of other ways … Muslim immigrants are much more likely than U.S.-​born Muslims to describe their race as Asian (41% vs. 10%). And U.S.-​born Muslims are more likely than immigrant Muslims to be black (32% vs. 11%).5 Here, I find it useful to engage with the theory of cultural trauma. Jeffrey Alexander (2004) writes, Cultural trauma occurs when members of a collectivity feel they have been subjected to a horrendous event that leaves indelible marks upon their group consciousness, marking their memories forever and changing their future identity in fundamental and irrevocable ways. (1) Alexander argues that cultural trauma is not just a “scientific concept,” but it also calls attention to “an engaging domain of social responsibility and political cation” (2004, 1). In a similar vein, Didier Fassin and Richard Rechtman (2009) discuss trauma as being a “moral category” that may require us to abandon scientific or medical definitions. It is more about how trauma impacts lived experience and the world and how it comes to be a statement of political and social conditions. I do not intend to make overgeneralizations about Muslims or about Islam, but I would like to think about how Muslims in the US have collectively experienced trauma, and how this trauma has informed their identities and choices and practices surrounding health care going forward, as Alexander suggests. I find it significant that this type of trauma may stem from the top-​down, with restrictive national policies and anti-​Islam and and-​immigrant rhetoric being abundant under President Trump. This trauma comes to the fore as Muslim patients and families interact with the health care system during end-​of-​life care, as Dr. Patel and Dr. Abbasi highlighted in particular. If this is not recognized or included as a potential determinant of health, then again Muslim patients and families may be placed in an even more vulnerable position. However, the solution to this may not be so simple. I previously argued that it would not be productive or helpful to see Muslim patients and families as “exceptional” or in need of specific services or types of care. It is partly for this reason as to why I  tried to give more attention to the creation and transformation of religious identities within the context of the United States, rather than to how religion influences decisions about care. We have to walk a fine line. We must recognize and actively address inequities and inequalities that Muslims in the US face due to religion, culture, or race or ethnicity. At the same time, though, we must be careful not to attribute behaviors or decisions only to faith, but analyze how faith itself, and the ways that key Islamic tenets about

150 Conclusion dying and death, are shaped by social, political, and economic forces as well as how faith and beliefs are influenced by the health care system in the US along with its approaches to end-​of-​life care. Part of why I wanted to spend some time here talking about cultural competence is because as an anthropologist who worked in a health care setting with a specific population, at times I felt like I was the “bearer” of cultural competence, meaning that I could make suggestions as to how to better care for Muslim patients who were nearing the end-​of-​life. I am not unique, here. As I stated in the preface, I have had conversations with other anthropologists who worked in similar settings who felt the same, and we all agreed, we cannot provide a checklist on how to care for any patients and their families who identify with a particular group. There are too many differences within groups to make these types of generalizations. I suggest that part of what we can do as anthropologists is encourage a critical analysis of the structural factors and societal issues that impede or shape care. While Mandaville was brought into the State Department as the expert on Islam and international relations and politics, I, as a cultural anthropologist, am calling for us to abandon “culture” in this case and to look more at the US health care system itself and our society to truly find ways to enhance all care, but particularly that is provided leading up to the end-​of-​life. Culture is a loaded and confused term for many of us. In my critique here, I draw on Paul Farmer (2005), who argues that culture as an explanation often misses the root causes of suffering: cultural difference, verging on a cultural determinism, is one of several forms of essentialism used to explain away assaults on dignity and suffering … “Culture” does not explain suffering; it may at worst furnish the alibi. (48–​49) Farmer argues that using culture as an explanation for suffering tends to ignore history and power. It leads us to overlook the processes by which inequalities were created and sustained over time. Societal structures can and should change. Parin Dossa (2018) conducted ethnographic research among South Asian Ismaili Muslims who settled in Canada due to being displaced from their homes in Uganda, Tanzania, and Kenya in the 1970s and 1980s. Dossa finds they are marginalized by the health system in Canada and in society even after having “undergone traumatic displacement as refugees” (2018, 559). Dossa levels a critique of Canadian medical anthropology since it has often not engaged in research on the “margins” (with the exception of First Nations): “It is within the margins of society that localized interventions into the medical system come to light in a manner that could affect transformative change” (2018, 559). Elsewhere, she has deployed the term “entangled

Conclusion  151 emplacement” in her work with Iranians and Ismailis, Canadian Muslim minorities: “Evoking social space and temporal realities, entangled emplacement brings to light the multiple ways in which people engage with as life circumstances unfold across socio-​cultural and politicized boundaries” (Dyck 2006 and Gedalof 2007, 2009 cited in Dossa 2017, 23). “Entangled emplacement” is a theoretical and methodological framework in her research among these communities concerning their experiences with palliative care. Dossa writes, this construct enables me to capture study participants’ trajectories of migration and resettlement over the course of their lives. I use the term entanglement to reveal the workings of structural factors unfolding locally, in the context of health, illness, and the end of life. (2017, 23) Throughout my research, and in the subsequent writing of this book, I have taken seriously the entanglements of faith and “structural factors” at the national and local levels that unfold over the course of end-​of-​life care, in dying, and at death to analyze the construction of Muslim identities. I have drawn inspiration from Dossa and her use of the concept of entanglement, as I also find it to be a useful way to avoid attributing decisions and practices only to religion, but rather to show how end-​of-​life care and death and dying within a medical context—​given its neoliberal approaches and policies and its embodiment of national politics and rhetoric—​can also influence religious beliefs and identities. Dossa states, “I am interested in seeing how these groups negotiate a system that has not included them structurally” (Anderson and Kirkham 1998 cited in Dossa 2017, 20). She continues, “I take the position that the words, voices, and life experiences of racialized minorities must enter into the professional space of palliative care providers if we are to work towards a more humane and just form of care” (Dossa 2017, 20). As Dossa prompts, drawing attention to the structure of the health care system and how Muslims are situated within society is a way to provide more equitable care to all patients during the end-​of-​ life, but more so for me, is a way to draw attention to the intersections of religion and the social, economic, cultural, and political, which work together to produce Muslim identities. In part, I hope to make an intervention into how illness, end-​of-​life care, and religion especially in the United States are researched and written about in the future, as I argue for a more robust examination of experiences that relies less on investigating “culture” (see Farmer 2004) and more on how people’s interactions with the health care system—​a construct itself that aligns with particular values—​can inform beliefs, perceptions, practices, and the ways that people think of themselves.

152 Conclusion

Final thoughts: Writing about end-​of-​life care during the pandemic Though we are all human beings, we have built walls between ourselves and our neighbors through nationalism, through race, caste, and class –​ which again breeds isolation, loneliness. (Jiddu Krishnamurti, Indian philosopher) I wrote this book in part during the COVID-​19 pandemic in 2020. In late 2019, news broke of a novel coronavirus spreading in Wuhan, China. A few months later, it had become a global health crisis. Writing this book during the pandemic, when much of the world was on lockdown in an attempt to slow the spread of the virus, as well as at a time when people around the world marched in protest of the killing of George Floyd in May 2020 and other Black men and women, made me acutely aware of the racism and other inequalities that have been institutionalized within the US health care system. I  was reminded of one time sitting in the care team meeting when they discussed a patient who held a particular type of health insurance, and because of this insurance, they were unsure if they could provide care. More so, I  was reminded of the Muslim parents who were assumed not to care about their infant’s poor health condition because of their religion. As I have discussed before, there have been intersections among movements and advocacy by minority groups in the United States who are often circumscribed by Orientalism, including Muslims and African Americans (and, of course, there are a large number of African American Muslims). We have witnessed how racism and the pandemic have collided. Muslim Advocates, an organization based in Washington, DC that, according to its website, “provides expert representation in the courts, the policy making process, and in the public dialogue so that American Muslims and all people can live free from discrimination” and aims to “litigate, educate, and advocate to uphold our country’s promise of equal treatment under the law for all Americans,”6 states that COVID-​19 should prompt Muslims to fight racial and ethnic discrimination, such as that leveled against Asians given the virus first began in China; protecting the incarcerated; aiding nonprofits and mosques; and supporting essential workers and those on the front lines of the pandemic. As Dr. Abbasi stated, it is not just about Muslims improving their own lives, but about how Muslims can work towards creating a better world for all. This conclusion has taken a slightly different tone and approach from the rest of the book due to writing it at the height of the pandemic and seeing how the health care system can frequently hurt people as much as helped them—​ including the health care providers themselves, as we have seen what a toll the pandemic has taken on many of them. I chose not to write this book about Islam and end-​of-​life care per se, but about being Muslim and interacting with the health care system as a way to show the ways that multiple factors outside of religion influence decisions and practices, and people’s faith and what they believe. My goal has been for this ethnography to contribute to theoretical

Conclusion  153 debates about care, death and dying, religion, and identity and to help fill an empirical void in medical anthropology. At the same time, however, my hope is that this book can also be a type of engaged anthropology that aims to improve health care for all people.

Notes 1 I am using the singular “they” here to help protect the parents and infant’s privacy. 2 “Group Health Plans and Health Insurance Issuers Under the Newborns’ and Mothers’ Health Protection Act; Joint Interim Rule.” Federal Register 603(27), October 27, 1998. Accessed June 23, 2020, http://​cabenefits.com/​wp-​content/​ uploads/​2009/​08/​HIPAA-​Newborns-​and-​Mothers-​Health-​Protection-​Act.pdf. 3 Mandaville, Peter. 2017. “The Ambivalence of Islam in U.S. Foreign Policy.” Ali Vural Ak Center for Global Islamic Studies Lecture Series. Fairfax, VA, March 7. 4 Adhami, Zaid. 2020. “To Reform or Decolonize the Mind? Islamophobia, American Muslims, and the Dilemmas of Double Consciousness.” Ali Vural Ak Center for Global Islamic Studies Virtual Guest Lecture. Fairfax, VA, April 30. 5 Pew Research Center. 2017. “Demographic Portrait of Muslim Americans.” In U.S. Muslims Concerned About Their Place in Society, but Continue to Believe in the American Dream. Accessed July 9, 2020, www.pewforum.org/​2017/​07/​26/​findings-​ from-​pew-​research-​centers-​2017-​survey-​of-​us-​muslims/​. 6 For more on Muslim Advocates, see https://​muslimadvocates.org/​about/​.

References

Abu-​Lughod, Lila. 2002. “Do Muslim Women Really Need Saving? Anthropological Reflections on Cultural Relativism and Its Others.” American Anthropologist 104(3): 783–​790. Abu-​Ras, Wahiba, Farid Senzai, and Lance Laird. 2012. “American Muslim Physicians’ Experiences Since 9/​11: Cultural Trauma and the Formation of Islamic Identity.” Traumatology 19(1): 11–​19. Abdul Khabeer, Su’ad. 2016. Muslim Cool: Race, Religion, and Hip Hop in the United States. New York: New York University Press. Adams, Vincanne. 2016. “Introduction:  Ethnomedicine and Medical Anthropology Today, in the Case of Tibet.” Medicine Anthropology Theory 3(2): 11–​18. Ahmad, Ahmad Atif. 2017. Islamic Law:  Cases, Authorities, and Worldview. New York: Bloomsbury. Agarwal, Sabrina and Bonnie Glencross. 2011. “Building a Social Bioarchaeology,” In Social Bioarchaeology, edited by Sabrina Agarwal and Bonnie Glencross, 1–​12. West Sussex, UK: Blackwell. Al-​ Bar, Mohammed Ali and Hassan Chamsi-​ Pasha. 2015. Contemporary Bioethics: Islamic Perspective. Cham, Switzerland: Springer. Al-​Kaysi, Marwan Ibrahim. 1986. Morals and Manners in Islam: A Guide to Islamic Ādāb. Leicester, UK: The Islamic Foundation. Alexander, Jeffrey C. 2004. “Toward a Theory of Cultural Trauma.” In Cultural Trauma and Collective Identity, by Jeffrey C. Alexander, Ron Eyerman, Bernard Giesen, Neil J. Smelser, and Piotr Sztompka, 1–​ 30. Berkeley:  University of California Press. Anderson, Joan, and Sheryl Reimer Kirkham. 1998. “Constructing Nation:  The Gendering and Racializing of the Canadian Health Care System.” In Painting the Maple:  Essays on Race, Gender and the Construction of Canada, edited by Veronica Strong-​Boag, Sherill Grave, Avigail Eisenberg, and Joan Anderson, 242–​ 261. Vancouver: University of British Columbia Press. Ankeny, Rachel A., Ross Clifford, Christopher F.C. Jordens, Ian H. Kerridge, and Rod Benson. 2005. “Religious Perspectives on Withdrawal of Treatment from Patients with Multiple Organ Failure.” Medical Journal of Australia 183(11/​12):  616–​621. Anzaldúa, Gloria. 1987. Borderlands:  The New Mestiza. San Francisco:  Spinsters/​ Aunt Lute.

References 155 Arabi, Yaseen M., Abdulla A. Al-​Sayyari, and Mohammed S. Al Moamary. 2018. “Shifting Paradigm: From ‘No Code’ and ‘Do-​Not-​Resuscitate’ to ‘Goals of Care’ Policies.” Annals of Thoracic Medicine 13(2), 67–​71. Aramesh, Kiarash. 2012. “The Ownership of Human Body: An Islamic Perspective.” Journal of Medical Ethics and History of Medicine 2(4): 1–​4 Arawi, Thalia A. 2010. “The Muslim Physician and Ethics of Medicine.” The Journal of the Islamic Medical Associaiton of North America 42(3): 111–​116. Armelagos, George J. 2003. “Bioarchaeology as Anthropology,” In Archaeology is Anthropology, edited by S.D. Gillespie and D. Nichols, 27–​41, Archeological Papers of the American Anthropological Association, No. 13. Association of Statisticians of American Religious Bodies (ASARB). 2012. “U.S. Religion Census: Religious Congregations and Membership Study.” Accessed July 25, 2020. www.usreligioncensus.org/​. Attewell, Guy. 2016. “Alignments? X-​ray Diversions, Haptics, Credibility—​With a ‘Bone-​Setting’ Clinic in Hyderabad City.” Medical Anthropology 35(1): 5–​16. Baddarni, Kassim. 2010. “Ethical Dilemmas and the Dying Muslim Patient.” Asian Pacif Journal of Cancer Prevention 11(S1): 107–​112. Bagby, Ihsan. 2011. “Basic Characteristics of the American Mosque:  Attitudes of Mosque Leaders, 1.” The US Mosque Study 2011. Accessed July 25, 2020. http://​ buildingbridgeswny.org/​wp-​content/​uploads/​American-​Mosque-​2011.pdf Baker, Kelly and Beagan, Brenda. 2014. “Making Assumptions, Making Space: An Anthropological Critique of Cultural Competency and Its Relevance to Queer Patient.” Medical Anthropology Quarterly 28(4): 578–​598. Balboni, Michael, and John Peteet. 2017. Spirituality and Religion within the Culture of Medicine: From Evidence to Practice. New York: Oxford University Press. Barlas, Asma. 2002. “Believing Women” in Islam: Unreading Patriarchal Interpretations of the Qur’an. Austin: University of Texas Press. Bernard, H. Russell. 2011. Research Methods in Anthropology:  Qualitative and Quantitative Approaches. Lanham, Maryland: AltaMira Press. Betancourt, Joseph, Alexander R. Green, J. Emilio Carrillo, and Owusu Ananeh-​ Firempong. 2003. “Defining Cultural Competence:  A Practical Framework for Addressing Racial/​Ethnic Disparities in Health and Health Care.” Public Health Reports 118(4): 293–​302. Bhasin, Veena. 2007. “Medical Anthropology: A Review.” Studies on Ethno-​Medicine 1(1): 1–​20. Biehl, João and Peter Locke. 2017. Unfinished:  The Anthropology of Becoming. Durham: Duke University Press. Boucher, Nathan A., Ejaz A. Siddiqui, and Harold Koenig. 2017. “Supporting Muslim Patients During Advanced Illness.” Permanente Journal 21: 16–​19. Bououne, Saïd. 2005. La résurgence d’une pratique thérapeutique religieuse “al-​Ruqya”:  ses liens avec la salafya. PhD diss. Aix-​Marseille Université. Breault, Joseph L. 2011. “DNR, DNAR, or AND? Is Language Important?” The Ochsner Journal 11(4): 302–​306. Browner, C.H., and Nancy Press. 1996. “The Production of Authoritative Knowledge in American Prenatal Care.” Medical Anthropology Quarterly 10(2): 141–​156. Buchbinder, Mara. 2015. All in Your Head:  Making Sense of Pediatric Pain. Berkeley: University of California Press.

156 References Buchbinder, Mara. 2018. “Choreographing Death: A Social Phenomenology of Medical Aid-​in-​Dying in the United States.” Medical Anthropology Quarterly 32(4): 481–​497. Butler, Judith. 2006. Gender Trouble: Feminism and the Subversion of Identity. New York:  Routledge. Butler, Judith. 2015. Notes Toward a Performative Theory of Assembly. Cambridge:  Harvard University Press. Canguilhem, Georges. 1989. The Normal and the Pathological. Brooklyn, New York:  Urzone. Cantú, Lionel. 2001. “A Place Called Home: A Queer Political Economy of Mexican Immigrant Men’s Family Experiences.” In Queer Families, Queer Politics, edited by Mary Bernstein and Renate Reimann, 112–​136. New  York:  Columbia University Press. Catalano, Joseph. 2012. Nursing Now! Today’s Issues, Tomorrow’s Trends. Philadelphia:  Davis Company. Chamsi-​Pasha, Hassan, and Mohammed Ali Albar. 2017. “Do not Resuscitate, Brain Death, and Organ Transplantation:  Islamic Perspective.” Avicenna Journal of Medicine 7: 35–​45. Chapple, Helen S. 2010. No Place for Dying:  Hospitals and the Ideology of Rescue. Walnut Creek, California: Left Coast Press. Chéron-​ Leboeuf, Laura, Lilyane Rachédi, Catherine Montgomery, and Fabienne Siche. 2017. Death and Mourning Among Migrants: Information Guide. Montreal:  METISS. Choong, K.A. 2015. “Islam and Palliative Care.” Global Bioethics 12(1): 28–​42. Cobb, Mark, Christina M. Puchlaski, and Bruce Rumbold. 2012. Oxford Textbook of Spirituality in Healthcare. New York: Oxford University Press. Connors, Alfred F., Neal V. Dawson, Norman A. Desbiens, William J. Fulkerson Jr., Lee Goldman, William A. Knaus, Joanne Lynn, Robert K. Oye, Marilyn Bergner, Anne Damiano, et  al. 1995. “A Controlled Trial to Improve Care for Seriously III Hospitalized Patients: The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT).” The Journal of the American Medical Association 274(20): 1591–​1598. Corbin, JM, and A Strauss. 1991. “A Nursing Model for Chronic Illness Management Based upon the Trajectory Framework.” Scholarly Inquiry for Nursing Practice 5(3): 155–​174. Crowley-​Matoka, Megan, and Gala True. 2016. “NO ONE WANTS TO BE THE CANDY MAN:  Ambivalent Medicalization and Clinician Subjectivity in Pain Management.” Cultural Anthropology 27(4): 689–​712. Daaleman, Timothy P., and Larry VandeCreek. 2000. “Placing Religion and Spirituality in End-​of-​Life Care.” Journal of the American Medical Association 284(19): 2514–​2517. Danely, Jason. 2019. “The Limits of Dwelling and the Unwitnessed Death.” Cultural Anthropology 34(2): 213–​239. Das, Veena. 2010. “Sexuality, Vulnerability, and the Oddness of the Human: Lessons from the Mahabharata.” Borderlands 9(3): 1–​17 Dau-​Schmidt, Nicholas C. 2012. “Forward Contracts  –​Prohibitions on Risk and Speculation Under Islamic Law.” 19(2): 533–​553. Dawood, N.J., trans. 1999. The Koran. London: Penguin Books. Deeb, Lara. 2006. An Enchanted Modern: Gender and Public Piety in Shi’I Lebanon:  Princeton: Princeton University Press.

References 157 Deeb, Lara, and Harb, Mona. 2013. Leisurely Islam:  Negotiating Geography and Morality in Shi‘ite South Beirut. Princeton: Princeton University Press. Delaune, Jules, and Wendy Everett. 2008. Waste and Inefficiency in the U.S. Health Care System. Cambridge, Massachusetts: New England Healthcare Institute. Doering, Lynn, Debra Moser, and Kathleen Dracup. 2000. “Correlations of Anxiety, Hostility, Depression, and Psychosocial Adjustment in Parents of NICU Infants.” Neonatal Network 19(5): 15–​23 Donnelly, William J. 1996. “The SUPPORT Project and Improving Care for Seriously Ill Patients.” The Journal of the American Medical Association 275(16): 1228–​1229. Dossa, Parin. 2017. “Entangled Emplacement:  Ethnographic Reading of Canadian Muslims’ Engagement with the World of Palliative Care.” Journal of Muslim Mental Health 11(1): 19–​38. Dossa, Parin. 2018. “From  Displaced Care  to  Social Care:  Narrative Interventions of Canadian Muslims.” American Anthropologist 120(3): 558–​560. Dyck, Isabel. 2006. “Travelling Tales and Migratory Meanings: South Asian Migrant Women Talk of Place, Health and Healing.” Social & Cultural Geography 7(1):  1–​18. Egnew, Thomas R. 2014. “The Art of Medicine: Seven Skills That Promote Mastery.” Family Practice Management 21(4): 25–​30 Elsheikh, Elsadig, Basima Sisemore, and Natalie Ramierz Lee. 2017. Legalizing Othering: The United States of Islamophobia. Berkeley: Haas Institute. Eneborg, Yusuf Muslim. 2013. “Ruqya Shariya: Observing the Rise of a New Faith Healing tradition amongst Muslims in East London.” Mental Health, Religion & Culture 16(10): 1080–​1096. Erickson, Pamela Irene. 2008. Ethnomedicine. Long Grove, Illinois: Waveland Press. Espiritu, Yen Le. 2005. “Gender, Migration and Work. Filipina Health Care Professionals to the United States.” Revue Européenne des Migrations Internationales 21(1): 55–​75. Evans-​Pritchard, E.E. 1976. Witchcraft, Oracles, and Magic among the Azande. Oxford:  Clarendon Press. Faber, Roland. 2011. “Negotiating Becoming,” In Secrets of Becoming:  Negotiating Whitehead, Deleuze, and Butler, edited by Roland Faber and Andrea M. Stephenson, 1–​49. New York: Fordham University Press. Farmer, Paul. 2004. “An Anthropology of Structural Violence.” Current Anthropology 45(3): 305–​325. Farmer, Paul. 2005. Pathologies of Power: Health, Human Rights, and the New War on the Poor. Berkeley: University of California Press. Fassin, Didier, and Richard Rechtman. 2009. The Empire of Trauma: An Inquiry into the Condition of Victimhood. Princeton: Princeton University Press. Fischer, Stacy, Sung-​Joon Miin, and Jean Kutner. 2010. “Advance Directive Discussions Do Not Lead to Death.” Journal of the American Geriatrics Society 58(2): 400–​401. Flach, Stephen D., Kimberly D. McCoy, Thomas E. Vaughn, Maria M. Ward, Bonnie J. Bootsmiller, and Bradley N. Doebbeling. 2004. “Does Patient-​centered Care Improve Provision of Preventive Services?” Journal of General Internal Medicine 19(10): 1019–​1026. Forester, Alan J., Monica Taljaard, Natalie Oake, Kumanan Wilson, Virginia Roth, and Carl van Walraven. 2012. “The Effect of Hospital-​Acquired Infection with Clostridium difficile on Length of Stay in Hospital.” Canadian Medical Association Journal 184(1): 37–​42.

158 References Foucault, Michel. 1974. The Archaeology of Knowledge and The Discourse on Language. New York: Pantheon Books. Foucault, Michel. 2003. “Society Must Be Defended” Lectures at the Collège de France 1975–​1976. New York: Picador. Fox, Christopher, Roy Porter, and Robert Wokler, eds. 1995. Inventing Human Science: Eighteenth-​Century Domains. Berkeley: University of California Press. Frank, Gelya, Leslie J. Blackhall, Vicki Michel, Sheila P. Azen, and Kyeyoung Park. 1998. “A Discourse of Relationships in Bioethics: Patient Autonomy and End-​of-​ Life Decision Making among Elderly Korean Americans.” Medical Anthropology Quarterly 12(4): 403–​423. Frush, Benjamin W., John B. Elberly Jr., and Farr A. Curlin. 2018. “What Should Physicians and Chaplains Do When a Patient Believes God Wants Him to Suffer?” AMA Journal of Ethics 20(7): 613–​620. Gatrad, A. R. 1994. “Muslim Customs Surrounding Death, Bereavement, Postmortem Examinations, and Organ Transplants.” British Medical Journal 309(6953): 521–​523. Gaylin, Willard. 1996. “Worshipping Autonomy.” Hastings Center Report 26(6): 43–​45. Gedalof, Irene. 2007. “Unhomely homes:  Women, Family and Belonging in UK Discourses of Migration and Asylum.” Journal of Ethnic and Migration Studies 33(1): 77–​94. Gedalof, Irene. 2009. “Birth, Belonging and Migrant Mothers:  Narratives of Reproduction in Feminist Migration Studies.” Feminist Review 93(1): 81–​100. Goldsmith, Oliver. 2000. “Culturally Competent Health Care.” Permanente Journal 4(1): 53–​55. Good, Mary Jo DelVecchio, Sarah S. Wilen, Seth S. Willen, Seth Donal Hannah, Ken Vickery, and Lawrence Taeseng Park. 2011. Shattering Culture: American Medicine Responds to Cultural Diversity. New York: Russell Sage Foundation. Goodman, Alan H. 1998. “The Biological Consequences of Inequality in Antiquity.” In Building a New Biocultural Synthesis: Political-​Economic Perspectives on Human Biology, edited by Alan H. Goodman and Thomas L. Leatherman,147–​170. Ann Arbor: University of Michigan Press. Greenhalgh, Susan. 2008. Just One Child:  Science and Policy in Deng’s China. Berkeley: University of California Press. Greenhalgh, Susan. 2015. Fat-​Talk Nation:  The Human Costs of America’s War on Fat. Ithaca, New York: Cornell University Press. Gremillion, Helen. 2003. Feeding Anorexia: Gender and Power at a Treatment Center. Durham: Duke University Press. Grosz, Elizabeth. 1994 Volatile Bodies: Toward a Corporeal Feminism. Bloomington:  Indiana University Press. Haddad, Yvonne Yazbeck. 2011. Becoming American? The Forging of Arab and Muslim Identity in Pluralist America. Waco, Texas: Baylor University Press. Hahn, Robert A., and Arthur Kleinman. 1983. “Biomedical Practice and Anthropological Theory:  Frameworks and Directions.” Annual Review of Anthropology 12: 305–​333. Hall, Stuart. 1994. “Cultural Identity and Diaspora,” In Colonial Discourse and Post-​ Colonial Theory: A Reader, edited by Patrick Williams and Laura Chrisman, 222–​ 237. London: Harvester Wheatsheaf. Hamdy, Sherine. 2012. Our Bodies Belong to God:  Organ Transplants, Islam, and the Struggle for Human Dignity in Egypt. Berkeley:  University of California  Press.

References 159 Haraway, Donna. 1988. “Situated Knowledge: The Science Question in Feminism and the Privilege of Partial Perspective.” Feminist Studies 14(3): 575–​599. Herbst, Laurel. 2004. “Hospice Care at the End of Life.” Clinics in Geriatric Medicine 20(4): 753–​765. Holmes, Seth M. 2012. “The Clinical Gaze in the Practice of Migrant Health: Mexican Migrants in the United States.” Social Science & Medicine 74(6): 873–​881. Holmes, Seth M. 2013. Fresh Fruit, Broken Bodies: Migrant Farmworkers in the United States. Berkeley: University of California Press. Holmes, Seth. 2016. “Migrant Farmworkers and the Pain of Picking.” In Cultural Anthropology: Contemporary, Public, and Critical Debates, edited by Keri Vacanti Brondo, 277–​286. New York: Oxford University Press. Hughes Rinker, Cortney. 2011. “The ‘Amazing’ Fertility Decline: Islam, Economics, and Reproductive Decision Making among Working-​Class  Moroccan Women.” Medical Anthropology Quarterly 25(4): 417–​435 Hughes Rinker, Cortney. 2013a. Islam, Development, and Urban Women’s Reproductive Practices. New York: Routledge. Hughes Rinker, Cortney. 2013b. “Responsible Mothers, Anxious Women: Contraception and Neoliberalism in Morocco.” Arab Studies Journal 21(1): 97–​121. Hughes Rinker, Cortney. 2014. “Creating Neoliberal Citizens in Morocco: Reproductive Health, Development Policy, and Popular Islamic Beliefs,” Medical Anthropology, 00: 1–​17. Hughes Rinker, Cortney. 2019. “Islam, Medicine, and Practice:  The Manifestation of Islamic Moral Values in Everyday Aspects of the U.S. Health Care System,” in Treating the Body in Medicine and Religion:  Jewish, Christian, and Islamic Perspectives, edited by John Fitzgerald and Ashley Moyse, New York: Routledge. Hui, David, Zohra Nooruddin, Neha Didwaniya, Rony Dev, Maxine De La Cruz, Sun Hyun Kim, Jung Hye Kwon, Ronald Hutchins, Christiana Liem, and Eduardo Bruera. 2014. “Concepts and Definitions for ‘Actively Dying,’ ‘End of Life,’ ‘Terminally Ill,’ ‘Terminal Care,’ and ‘Transition of Care’: A Systematic Review.” Journal of Pain and Symptom Management 47(1): 77–​89. Hunt, Linda M., Hannah S. Bell, Allison M. Baker, and Heather Howard. 2017. “Electronic Health Records and the Disappearing Patient.” Medical Anthropology Quarterly 31(3): 403–​421. Inhorn, Marcia, and Carolyn Sargent. 2006. “Medical Anthropology in the Muslim World:  Ethnographic Reflections on Reproductive and Child Health.” Medical Anthropology Quarterly 20(2006): 1–​11. Inhorn, Marcia, and Gamal Serour. 2011. “Islam, Medicine, and Arab-​ Muslim Refugee Health in America after 9/​11.” The Lancet 378(9794): 935–​943. Inhorn, Marcia, and Soraya Tremayne, eds. 2012. Islam and Assisted Reproductive Technologies: Sunni and Shia Perspectives. New York: Berghahn Books. Ishak, Mohammad Isyraf, and Basri Ibrahim. “Form of Rukhsah for Prayer in Critical Situation.” International Journal of Academic Research in Business & Social Sciences 10(4): 359–​370. Jarmakani, Amira. 2008. Imagining Arab Womanhood:  The Cultural Mythology of Veils, Harems, and Belly Dancers in the US. New York: Palgrave Macmillan. Johnson-​Hanks, Jennifer. 2006. Uncertain Honor: Modern Motherhood in an African Crisis. Chicago: University of Chicago Press. Joseph, Suad. 1993. “Connectivity and Patriarchy among Urban Working-​Class Arab Families in Lebanon.” Ethos 21(4): 452–​484.

160 References Kaufman, Sharon. 2005. And a Time to Die: How American Hospitals Shape the End of Life. Chicago: Chicago University Press. Kaufman, Sharon. 2015. Ordinary Medicine: Extraordinary Treatments, Longer Lives, and Where to Draw the Line. Durham: Duke University Press. Keimig, Rose Kay. 2020. “Chronic Living and Delayed Death in Chinese Eldercare Institutions.” Anthropology & Aging 41(1): 17–​30. Kellerman, Natan P.F. 2013. “Epigenetic Transmission of Holocaust Trauma:  Can Nightmares be Inherited?” Israel Journal of Psychiatry and Related Sciences 50(1): 33–​39. Kleinman, Arthur. 1988. The Illness Narratives:  Suffering, Healing, and the Human Condition. New York: Basic Books. Kleinman, Arthur and Peter Benson. 2006. “Anthropology in the Clinic: The Problem of Cultural Competency and How to Fix it.” PLOS Medicine 3(10): 1673–​1676. Kobeisy, Ahmed. 2004. “Care for Muslim Seniors.” Islamic Horizons. January/​ February: 18–​21. Kochar, Mahendr S. 2006. “Professional Demands and Religious Observance.” AMA Journal of Ethics 8(5): 335–​336. Kreps, Joel Ibrahim. 2009. “The Search for Muslim Near-​Death Experiences.” Journal of Near-​Death Studies 28(2): 67–​86 Krout, Robert E. 2003. Music Therapy with Imminently Dying Hospice Patients and their Families: Facilitating Release Near the Time of Death. American Journal of Hospice and Palliative Medicine 20(2): 129–​134. Kurth, Laura, and Pieter Glasbergen. 2017. “Serving a Heterogenous Muslim Identity? Private Governance Arrangements of Halal Food in the Netherlands.” Agriculture and Human Values 34 (1): 103–​118. Laird, Lance, Mona M. Amer, Elizabeth D. Barnett, and Linda L. Barnes. 2007. “Muslim Patients and Health Disparities in the UK and the US.” Archives in Disease in Childhood 92: 922–​926. Lamb, Sarah. 2019. “On Being (Not) Old:  Agency, Self-​ care, and Life-​ course Aspirations in the United States.” Medical Anthropology Quarterly 33(2): 263–​281. Lambek, Michael. 2000. “The Anthropology of Religion and the Quarrel between Poetry and Philosophy.” Current Anthropology 41(3): 309–​320. Langdon, Esther Jean, and Flávio Braune Wiik. 2010. “Anthropology, Health and Illness: An Introduction to the Concept of Culture Applied to the Health Sciences.” Revista Latino-​Americana de Enfermagem 18(3): 459–​466. Lawrence, R.E., and F.A. Curlin. 2009. “Autonomy, Religion and Clinical Decisions: Findings from a National Physician Survey.” Journal of Medical Ethics 35(4): 214–​218. Leong, Madeline, Sage Olnick, Tahara Akmal, Amanda Copenhaver, and Rab Razzak. 2016. “How Islam Influences End-​of-​Life Care: Education for Palliative Care Clinicians.” Journal of Pain and Symptom Management 52(6): 771–​774. Lipka, Michael. 2017. “Muslims and Islam:  Key Findings in the U.S.  and around the World.” Pew Research Center. Accessed July 25, 2020. www.pewresearch.org/​ fact-​tank/​2017/​08/​09/​muslims-​and-​islam-​key-​findings-​in-​the-​u-​s-​and-​around-​the-​ world/​. Lock, Margaret. 2001. Twice Dead: Organ Transplants and the Reinvention of Death. Berkeley: University of California Press. Lock, Margaret, and Vinh-​Kim Nguyen. 2010. An Anthropology of Biomedicine. West Sussex, UK: Wiley-​Blackwell.

References 161 Lucchetti, Giancarlo, Mario Fernando Prieto Peres, and Rodolfo Damiano. 2019. Spirituality, Religiousness and Health: From Research to Clinical Practice. Cham, Switzerland: Springer Mahmood, Saba. 2005. Politics of Piety: The Islamic Revival and the Feminist Subject. Princeton: Princeton University Press. Malinowski, Bronislaw. 1922. Argonauts of the Western Pacific: An Account of Native Enterprise and Adventure in the Archipelagoes of Melanesia New Guinea. London:  Routledge. Mambu, Joseph. 2017. “Restoring the Art of Medicine.” The American Journal of Medicine 130(12): 1340–​1341. Marx, Karl. 1982. Critique of Hegel’s Philosophy of Right, translated by Annette Jolin and Joseph O’Malley. Cambridge, UK: Cambridge University Press. Massignon, Louis. 1941. “Le « Hadith al-​ruqya » musulman première version arabe du « Pater».” Revue de l’histoire des Religions 123: 57–​62. Mattson, Ingrid. 2019. “ ‘The Believer is Never Impure’:  Islam and Understanding the Embodied Person.” In Treating the Body in Medicine and Religion:  Jewish, Christian, and Islamic Perspectives, edited by John J. Fitzgerald and Ashley John Moyse, 64-​83. Abingdon: Routledge. Merriam-​Webster, s.v. “active.” Accessed May 25, 2019. www.merriam-​webster.com/​ dictionary/​active. Merriam-​Webster, s.v. “dying.” Accessed May 25, 2019. www.merriam-​webster.com/​ dictionary/​dying. Metzl, Jonathan M., and Helena Hansen. 2014. “Structural Competency: Theorizing a New Medical Engagement with Stigma and Inequality.” Social Science & Medicine 103: 126–​133. Mikkelsen, Henrik Hvenegaard, Nete Schwennesen, and Aske Juul Lassen. 2019. “Energy and Aging in the Danish Welfare State: Ethnographic Explorations of an Omnipresent but Forgotten Concept.” Anthropology & Aging 40(2): 1–​9. Mir, Shabana. 2014. Muslim American Women on Campus: Undergraduate Social Life and Identity. Chapel Hill: University of North Carolina Press. Moore, Shaiesha. 2013. “The Culture of Islam.” Berkley Center for Religion, Peace, & World Affairs, November 22. Accessed June 15, 2020. https://​berkleycenter.georgetown.edu/​posts/​the-​culture-​of-​islam. Moore, Katrina Louise. 2017. “A Spirit of Adventure in Retirement: Japanese Baby Boomers and the Ethos of Interdependence.” Anthropology & Aging 38(2): 10–​28. Mousavi, SM, A Akbari, F Lotfi Kashani, ME Akbari, and Najd Sepas. 2011. “Euthanasia in Cancer Patients, Islamic Point of View.” Iranian Journal of Cancer Prevention 2: 78–​81. Mulligan, Jessica. 2016. “Insurance Accounts:  The Cultural Logics of Health Care Financing.” Medical Anthropology Quarterly 30(1): 37–​61. Nelson-​ Becker, Holly. 2017. Spirituality, Religion and Aging:  Illuminations for Therapeutic Practice. Thousand Oaks, California: Sage. Newman, Jess Marie. 2019. “‘There is a Big Question Mark’: Managing Ambiguity in a Moroccan Maternity Ward.” Medical Anthropology Quarterly 33(3): 386–​402. Nichter, Mark. 1992. Anthropological Approaches to the Study of Ethnomedicine. Yverdon, Switzerland: Gordon and Breach Science Publishers. Norwood, Frances. 2009. The Maintenance of Life: Preventing Social Death Through Euthanasia Talk and End-​of-​Life Care  –​Lessons from the Netherlands. Durham:  Carolina Academic Press.

162 References O’Brien, John. 2019. Keeping It Halal:  The Everyday Lives of Muslim American Teenage Boys. Princeton: Princeton University Press. Owczarzak, Jill, Michelle Broaddus, and Steven Pinkerton. 2016. “Audit Culture: Unintended Consequences of Accountability Practices in Evidence-​Based Programs.” American Journal of Evaluation 37(3): 326–​343. Özyürek, Esra. 2015. Being German, Becoming Muslim: Race, Religion, and Conversion in the New Europe. Princeton: Princeton University Press. Padela, Aasim, Katie Gunter, and Amal Killawi. 2011. Meeting the Healthcare Needs of American Muslims: Challenges and Strategies for Health Settings. Washington, D.C.: Institute for Social Policy and Understanding. Parker Pearson, Michael. 1999. The Archaeology of Death and Burial. College Station, Texas: Texas A&M University Press. Parvez, Z. Fareen. 2017. Politicizing Islam: The Islamic Revival in France and India. New York: Oxford University Press. Pizzi, Michael A. 2015. “Promoting Health and Well-​ Being at the End of Life through Client-​Centered Care.” Scandinavian Journal of Occupational Therapy 22(6): 442–​449. Porter, Dorothy. 1999. Health, Civilization, and the State: A History of Public Health from Ancient to Modern Times. London: Routledge. Puchalski, Christina, and Betty Ferrell. Making Health Care Whole:  Integrating Spirituality into Patient Care. West Conshohocken, Pennsylvania:  Templeton  Press. Rassool, G. Hussein and Chandbi Sange. 2014. “Health Behaviours in Islam.” In Cultural Competence in Caring for Muslim Patients, edited by G. Hussein Rassool. New York: Palgrave Macmillan. Ribera, Joan M. and Hausmann-​Muela, Susana. 2011. “The Straw That Breaks the Camel’s Back Redirecting Health-​Seeking Behavior Studies on Malaria and Vulnerability.” Medical Anthropology Quarterly 25(1): 103–​121. Riggan, James. 2019. That Which They Write: Qur’Anic Healing and Material Agency in Morocco. PhD diss. Florida State University. Riley, Krista M. 2009. “How to Accumulate National Capital: The Case of the ‘Good’ Muslim.” Global Media Journal: Canadian Edition 2(2): 57–​71. Rivers, W.H.R. 2001[1924]. Medicine, Magic and Religion. New York: Routledge. Rogers, A.C. 1997. “Vulnerability, health and health care.” Journal of Advanced Nursing 26(1): 65–​72. Sachedina, Abdulaziz. 2005. “End-​of-​Life: the Islamic View” The Lancet 366 (9487):  774–​779. Sachedna, Abdulaziz. 2009. Islamic Biomedical Ethics. New  York:  Oxford University Press. Saeed, Fahad, Nadia Kousar, Sohaib Aleem, Owais Khawaja, Asad Javaid, Mohammed Fasih Siddiqui, and Jean L. Holley. 2015. “End of Life Care Beliefs Among Muslim Physicians.” American Journal of Hospice & Palliative Medicine 32(4): 388–​392. Saidi, Tamim. 2008. “Islam and Culture:  Don’t Mix Them Up.” MINNPOST, February 15, 2008. Accessed June 15, 2020. www.minnpost.com/​community-​ voices/​2008/​02/​islam-​and-​culture-​dont-​mix-​them/​. Salmoirago-​Blotcher, Elena, George Fitchett, Katherine Leung, Gregory Volturo, Edwin Boudreaux, Sybil Crawford, Ira Ockene, and Farr Curlin. 2016. “An

References 163 Exploration of the Role of Religion/​Spirituality in the Promotion of Physicians’ Wellbeing in Emergency Medicine.” Preventative Medicine Reports 3: 189–​195 Salmond, Susan W., and Estrella Guitérrez David. 2005. “Attitudes toward Advane Directives and Advance Directive Completion Rates.” Orthopaedic Nursing 24(2): 117–​127. Scheper-​ Hughes, Nancy. 2009. “Death and Dying in Anxious America,” In The Insecure American:  How We Got Here and What We Should Do about It, edited by Hugh Gusterson and Catherine Besteman, 317–​344. Berkeley:  University of California Press. Seale, Clive. 2010. “The Role of Doctor’s Religious Faith and Ethnicity in Taking Ethically Controversial Decisions During End-​of-​Life Care.” Journal of Medical Ethics 36(11): 677–​682. Shuriye, Abdi O. 2015. “The Veracious Construal of Halal Cosmetic Products and its Relation to Taharah (Cleanliness) and Nadhafa (Hygiene and Sanitation) in Islam. Mediterranean Journal of Social Sciences 6(6 S1): 266–​270. Siddiqi, Muzammil. 2004. “Life and Death Issues.” Islamic Horizons. January/​ February: 34–​37. Shore, Cris, and Susan Wright. 2015. “Audit Culture Revisited: Ranking, Rating, and the Reassembling of Society.” Current Anthropology 56(3): 421–​444 Sökefeld, Martin. 1999. “Debating Self, Identity, and Culture in Anthropology.” Current Anthropology 40(4): 417–​447. Solimeo, Samantha. 2009. With Shaking Hands:  Aging with Parkinson’s Disease in America’s Heartland. New Brunswick: Rutgers University Press. Speight, R. Marston. 2000. “A Look at Variant Readings in the Hadīth.” Der Islam 77(1): 169–​179. Stewart, Moira, Judith Belle Brown, Allan Donner, Ian R. McWhinney, Julian Oates, W. Wayne Weston, and John Jordan. 2000. “The Impact of Patient-​Centered Care on Outcomes.” The Journal of Family Practice 49(9): 796–​804. Strathern, Marilyn, ed. 2000. Audit Cultures: Anthropological Studies in Accountability, Ethics, and the Academy. London: Routledge. Tayeb, Mohamad A., Ersan Al-​Zamel, Muhammed M. Fareed, and Hesham A. Abouellail. 2010. “A ‘Good Death’: Perspectives of Muslim Patients and Health Care Providers.” Annals of Saudi Medicine 30(3): 215–​221. Taylor, Janelle. 2008. “On Recognition, Care, and Dementia.” Medical Anthropology Quarterly 22(4): 313–​335. Teno, Joan M., Andrea Gruneir, Zachary Schwartz, Aman Nanda, and Terri Wetle. 2007. “Association Between Advance Directives and Quality of End-​ of-​ Life Care: A National Study.” Journal of the American Geriatrics Society 55(2): 189–​194. Torres-​ Rouff, Christina. 2011. Hiding Inequality beneath Prosperity:  Patterns of Cranial Injury in Middle Period San Pedro de Atacama, Northern Chile. American Journal of Physical Anthropology 146(1): 28–​37. Unruh, David R. 1983. “Death and Personal History:  Strategies of Identifying Preservation.” Social Problems 30(3): 340–​351. Van Den Branden, Stef and Bert Broeckaert. 2008. “Medication and God at Interplay:  End-​of-​Life Decision-​Making in Practicing Male Moroccan Migrants Living in Antwerp, Flanders, Belgium.” In Muslim Medical Ethics: From Theory to Practice, edited by Jonathan E. Brockopp and Thomas Eich. 194–​ 208. Columbia: University of South Carolina Press.

164 References van Meijl, Toon. 2008. “Culture and Identity in Anthropology: Reflections on ‘Unity’ and ‘Uncertainty’ in the Dialogical Self.” International Journal for Dialogical Science 3(1): 165–​190. Vig, Elizabeth K., and Robert A. Pearlman. 2003. “Quality of Life While Dying: A Qualitative Study of Terminally Ill Older Men.” Journal of the American Geriatrics Society 51(11): 1595–​1601. Vivanco, Louis. 2017. Fieldnotes: A Guided Journal for Doing Anthropology. New York:  Oxford University Press. Waitt, Gordon R. 2005. “Doing Discourse Analysis.” In Qualitative Research Methods in Human Geography, edited by Iain Hay, 163–​191. Oxford: Oxford University Press. Wang, Hao, Richard Robinson, Carlos Johnson, Nestor R. Zenarosa, Rani D. Jayswal, Joshua Keithley, and Kathleen A Delaney. 2014. “Using the LACE Index to Predict Hospital Readmissions in Congestive Heart Failure Patients.” BMC Cardiovascular Disorders 14(97): 1–​8. https://​doi.org/​10.1186/​1471-​2261-​14-​97. Wennberg, John E., Elliott S. Fisher, Thérèse A. Stukel, Jonathan S. Skinner, Sandra M. Sharp, and Kristen K. Bronner. 2004. “Use of Hospitals, Physician Visits, and Hospice Care during Last Six Months of Life among Cohorts Loyal to Highly Respected Hospitals in the United States.” BMJ 328(7440). doi:10.1136/​ bmj.328.7440.607. Wentzell, Emily. 2017. “Medical Research Participation as ‘Ethical Intercorporeality’:  Caring for Bio–​Social Bodies in a Mexican Human Papillomavirus (HPV) Study.” Medical Anthropology Quarterly 31(1): 115–​132. Williams Jr., John W. 1995. “Sinusitis—​Beginning a New Age of Enlightenment?” Western Journal of Medicine 163(1): 80–​82. Wilson, Michael, Lori M. Rhudy, Beth A. Ballinger, Ann N. Tescher, Brian W. Pickering, and Ognjen Gajic. 2013. “Factors that Contribute to Physician Variability in Decisions to Limit Life Support in the ICU: A Qualitative Study.” Intensive Care Medicine 39(6): 1009–​1018. Yi, Michael S., Sara E. Luckhaput, Joseph M. Mrus, Caroline V. Mueller M, Amy H. Peterman, Christina M. Puchalski, and Joel Tsevat. 2006. “Religion, Spirituality, and Depressive Symptoms in Primary Care House Officers.” Ambulatory Pediatrics 6(2): 84–​90. Zaidi, Danish. 2018. “Influences on Religion and Spirituality in Medicine.” AMA Journal of Ethics 20(7): E609–​612. Zhang, Yan. 2020. “Debating ‘Good’ Care:  The Challenges of Dementia Care in Shanghai, China.” Anthropology & Aging 41(1): 52–​68. Zimeri, Saed. 2015. “A Prolegomena to an Emancipatory Reading of Islam,” Crisis & Critique 2(1): 95–​113.

Index

Abbasi, Dr. 12–​13, 102, 148, 149, 152 Abu-​Lughod, Lila 139, 140 Abu-​Ras, Wahiba  23 ACA (Affordable Care Act) 22, 45–​6 ACP (advance care planning) 18, 46, 57, 58 active aging 3 actively dying see also death; end-​of-​life: and Catholics 2, 87; a comfortable death 11, 124–​7; defining 1, 4–​8; end-​of-​life care and Muslim identities 1–​26; impact on identities 8–​14, 111; paradox of xv, xvii, xviii, 4, 10, 14, 21, 141; patient examples 58, 108, 117, 118, 123, 124, 142; and Psalm 23 2 Adams, Vincanne 37 Adhami, Zaid 98 advance care planning (ACP) 18, 46, 57, 58 advance directives xviii, 41, 45, 89; Five Wishes program 78; and Muslims 42–​3, 59, 107, 110, 112 Affordable Care Act (ACA) 22, 45–​6 African Americans as practitioners of Islam 18, 152 Agarwal, Sabrina 14 aging 3, 14, 44; aging parents and children’s decisions 65, 69–​70, 95–​116; in Denmark 4; in Japan 47; in the US 3 Aging with Dignity (organization) 78 Ahmed (wife actively dying) 58, 117–​20, 125, 142, 143 aid-​in-​dying (AID) or medical aid in dying (MAID) xiii, xiv, xv, 38 Alaoui, Dr. 54–​5, 63–​5 Al-​Bar, Mohammed Ali 54 Alexander, Jeffrey 149 al-​Haj, Hatem  49–​50

Ali (end-​of-​life choices for his father) 59–​60, 80, 86, 110, 113–​14, 116, 133–​4, 148; dealing with the burial 127–​9, 131–​2; praise for Dr. Idrisi 75–​6, 112–​13, 143 Allah (God) 63, 65, 86, 91, 112, 120; all things coming from 58, 66, 96, 113–​14, 119, 124–​5, 126; causing or curing disease or illness 43, 54–​5, 71, 82; forgiveness of 83, 124; judgment of 82–​4, 124, 126; our bodies belong to 119–​20, 124; prayers to 70, 118, 119 Allow Natural Death (AND) 19, 115, 120 Al-​Qudah, Dr. Main Khalid 49, 63–​4 AMA (American Medical Association) xv American Academy of Hospice and Palliative Medicine 77 American College of Physicians 34 American Heart Association 103 American Medical Association (AMA) xv American Society for Bioethics and Humanities (ASBH) 63, 67 AMJA (Assembly of Muslim Jurists of America) 16, 49, 63–​4, 82 AND (Allow Natural Death) 19, 115, 120 ….And a Time to Die: How American Hospitals Shape the End of Life (Kaufman) 44 anthropology 13, 14, 21–​3, 38, 139, 153; see also cultural anthropology; medical anthropology Anthropology & Aging (journal) 3–​4 Appalachia and end-​of life care xvi, xviii, 41, 45 Aramesh, Kiarash 120

166 Index Arawi, Thalia A. 84 Arlington Innovation Center for Health Research (Virginia Tech) xvi ASBH (American Society for Bioethics and Humanities) 63, 67 Assembly of Muslim Jurists of America (AMJA) 16, 49, 63–​4, 82 Attum, Basem 81–​2 “authentication” 21 autopsies 121 Baker, Allison 22 Baker, Kelly 144 Bashara, Dr. 42, 43, 67, 84–​8, 92, 145 Basyouni, Shaykh Waleed 82–​3 Baxter v. Montana xiv Beagan, Brenda 144 becoming, concept of 13, 15 Bell, Hannah 22 Benson, Peter xvii, 144–​5, 147 Berkley Center for Religion, Peace & World Affairs 145 Betancourt, Joseph 146 Biden, Beau xiv Biehl, João 14 bioarchaeology and cultural anthropology 14–​15 bioethics 67 biological death xix, 4, 8, 120–​2 biomedicine in the US 25, 36–​9, 55, 147 “Black lives matter” protests 132–​3, 152 Boucher, Nathan 57, 58 Breault, Joseph L. 103 Broeckaert, Bert 54 Buchbinder, Mara xiii, 38, 39 burial practices see Muslim burial practices “bus,” when a person doesn’t know how to get on a 137–​9

China 46, 68, 152 Choong, K. A. 69, 71 “closure” xix, 140, 141 CMS (Centers for Medicare and Medicaid Services) 47 collective guilt 97–​8, 148 Colorado and End-​of-​Life legislation xiv comfort care 6, 35, 78, 86, 92–​4, 106, 120 Compassion & Choices (organization) xiv “connectivity,” concept of 11 Corbin, Juliet 100 Counseling American Muslims: Understanding the Faith and Helping the People (Kobeisy) 66 COVID-​19 46–​7, 121, 152–​3 cremation 128 Critique of Hegel’s Philosophy of Right (Marx) 91 cultural anthropology 14–​15, 36, 150 cultural competency xvi–​xvii, 142–​51 cultural differences (Muslims treated differently from Christians) xvii, 138, 139, 150; see also “exceptional,” use of term for Muslim patients “cultural trauma theory 23, 149 culture xvii, 10, 36, 60, 90, 144–​5; audit culture 40–​1; clash of Muslim and American cultures 110, 122, 149; cross-​cultural misunderstandings 137–​9, 141, 144, 147, 152; cultural determinism 150; cultural trauma 149; as an explanation for suffering 150; and identity 24; and interpretations of Islam 5, 6, 56, 89, 99, 102; religion and culture 145–​7 curative treatments xv, 6, 34, 37, 78, 86, 92–​3, 115, 120, 138 Curlin, Farr 77, 79

California and End-​of-​Life legislation xiii Canadian Muslims 100, 151 Canguilhem, Georges xv Cantú, Lionel 96–​7 caregiving preferences of Muslims 67–​71 Carilion Virginia Tech School of Medicine xvi Catholics and actively dying 2, 87 Centers for Medicare and Medicaid Services (CMS) 47 Chamsi-​Pasha, Hassan  54 Chapple, Helen 43–​4

Daalemann, Timothy 11 Damiano, Rodolfo Furlan 77 Danely, Jason 47 Dau-​Schmidt, Nicholas  48–​9 death see also actively dying; dying bodies; end-​of-​life; terminally ill: adult Muslims caring for dying parents 95–​116, 117–​35; American perceptions of 2, 7; biological death xix, 4, 8, 120–​2; challenges for immigrants going through mourning and death 130–​1; comfortable death 11, 69, 71, 93, 117, 124–​7; coming from Allah

Index  167 (God) 58, 66, 96, 113–​14, 119, 124–​6; constructive nature of 8; decisions made by Muslims 57–​71; denial of 91–​2; dying and defining faith 107–​10; as a failure of modern medicine 4; “good” death 69, 123–​4, 126; Islam on 8, 16–​18, 25, 54, 58, 149–​50; most Americans wanting to die at home 46–​7; Muslims’ relationship to 1, 9, 66–​7, 69; needing death to be painful 91; not the end to identity 12; as “an opening” xviii, xix, 7–​8, 140; paradox of xv, xvii, xviii, 4, 10, 14, 21, 141; processual nature of 7–​8; quality of dying in the US 45; and religious identities 115–​16; timing of 123–​4; as a treatable condition in the US 3; unwillingness to talk about xviii, 89 “death panels” 46 Death with Dignity (Montana SB 167) xiv Death with Dignity National Center xiv Deeb, Lara 21, 63, 143–​4 Denmark, aging in 3–​4 discourse analysis 16 District of Columbia see Washington, DC Doering, Lynn 139 Do Not Attempt Resuscitation (DNAR) 103–​4, 106, 118 Do Not Resuscitate (DNR) orders 19, 31–​2, 87, 94, 106; change to DNAR (Do Not Attempt Resuscitation) 103; examples with patients 35, 45, 95, 101, 103, 107, 115; relying on God’s will instead 43, 120 Dossa, Parin 150–​1 Dracup, Kathleen 139 dying bodies, 1, 2, 87–​8, 93, 120; see also death; end-​of-​life: illness trajectory model 100–​1; and Muslim patients 13–​15, 20, 22, 94, 105, 107, 116; physiological changes 9, 10, 20, 120; and vulnerability 142 Eberly, John Brewer 77 economics in medicine: high cost of health care in the US 53–​4; long-​ term care 68–​9; paying for end-​of-​life care in US 48–​50; used for making decisions 39–​42 Egnew, Thomas 78–​9

electronic health or medical records (EHRs or EMRs) 22, 34 empathy, role of in end-​of-​life care 88–​93, 145 end-​of-​life see also actively dying; Ali (end-​of-​life choices for his father); death; dying bodies; Khalid (a “good” Muslim child and a dying father); palliative care; terminally ill: adult children caring for dying parents 95–​116; and advance care planning 19, 46, 57, 58; caregiving preferences of Muslims 67–​71; characteristics of end-​ of-​life care in US 25, 31–​50; comfort care 6, 35, 78, 86, 92–​4, 106, 120; creating end-​of-​life discussions 45, 57, 58, 89; definition 4–​6; empathy and humanity, role of in 88–​93, 145; end-​of-​life care in Saudi Arabia 31–​2; Five Wishes program 78; Islam and end-​of-​life care 53–​71, 107–​10; “learning how to live while dying” xv, xvii; Muslim doctors on 31–​3, 75–​94; during the pandemic 152–​3; paying for end-​of-​life care in US 48–​50; spirituality and religiosity associated with 78; as a waste of resources 33–​4 End-​of-​Life legislation xiii–​xiv, 38 End of Life Option Act (Maryland HB 399 and SB 311) xiii–​xiv End-​of-​Life research project 10, 15–​21; choosing to focus on Muslim patients and physicians 24–​6; conclusions 137–​53; location of 17–​18; looking at identity creation and transformation 20–​1; looking at institutional practices 18–​20; prelude to xviii–​xx; writing during the pandemic 152–​3 Eneborg, Yusuf Muslim 83 “Energy and Aging in the Danish Welfare State” (article in Anthropology & Aging) 3 the Enlightenment 36–​9, 48 “entangled emplacement” 150–​1 epigenetic inheritance of stress 24 ethnography 22 ethnomedicine 36–​9 “exceptional,” use of term for Muslim patients 9–​10, 13, 24, 139–​42, 149; see also cultural differences Extremis (Netflix documentary) 9

168 Index family unit, importance of in Muslim culture 81–​2, 84, 90; adult children caring for dying parents 95–​116; “good” Muslim child, conception of and expectations for 101–​7 Farmer, Paul 150 Fassin, Didier 149 fatwas 16; on DNRs 32; on insurance 49; on judgment by Allah 82; on secular knowledge 63–​4 FCNA (Fiqh Council of North America) 16 Fernando, Mario 77 Ferrell, Betty 77 The Fiqh Acaemy (Majma al-​Fiqh al-​Islami)  49 Fiqh Council of North America (FCNA) 16 Five Wishes (Aging with Dignity) 78 Floyd, George 152 Foucault, Michael 15, 39 Frank, Adam xviii Frush, Benjamin 77 Fudadin, Dr. 32–​3, 36, 53, 56, 65, 68, 69, 126 Full Code 19, 43, 95, 107, 117, 125, 129, 130; changing from Full Code 101, 103, 118, 120 funeral practices see Muslim burial practices Furedi, Frank 24 The Future of Health and Care of Older People (Tayeb et al) 123–​4 Gaddafi, Muammar, death and burial of 120–​1 Gaddafi, Mutassim 121 Gatrad, A. R. 124 George Washington University Institute for Spirituality and Health (GWish) 77 Ghambou, Mokhtar 76 gharar (risk or uncertainty) 48 Glasbergen, Pieter 55–​6 Glencross, Bonnie 14 Glimm, Carl xiv God see Allah (God) “good” death see death “good” Muslim child 101–​7 Gray, Freddie 132, 133 Greenhalgh, Susan 39 Gunter, Katie 113–​15

GWish (George Washington University Institute for Spirituality and Health) 77 Haddad, Yvonne Yazbeck 99 Haifa (dealing with her own death) 129, 131–​4, 142–​3 halal (permitted) 49, 56, 102 Hall, Stuart 12 Hamdy, Sherine 119–​20, 124 Hamed, Dr. 31–​2, 36, 59, 69 Hannig, Anita 6–​7 Haraway, Donna 113 Harb, Mona 21, 143–​4 Hausmann-​Muela, Susana  141–​2 Hawaii and End-​of-​Life legislation xiii–​xiv healing rituals 118, 119 health care in other countries see China; Denmark, aging in; Japan, health care in; Saudi Arabian end-​of-​life care health care in the US 152; and anthropology and Islam 21–​3; characteristics of end-​of-​life care in US 25, 31–​50; compared to Saudi Arabia 31–​2; and cultural competency 143–​51; as a cultural construct 25; decision making process 57; ethnography of 140, 143–​51; ethnomedicine, biomedicine, and the Enlightenment shaping 36–​9; high cost of health care 48–​50, 53–​4; interactions with impacting religious identities 8, 11, 20–​2, 123, 140, 143; lack of research on financial side of 23; Muslim interactions with 5, 20–​2, 57–​8, 97, 100–​1, 110, 114, 123, 149–​52; and Muslim medical providers 31–​3, 75–​94; over-​usage of technology 53; patient autonomy in 82; patient-​ centeredness 84; relationship to Islamic law 53–​71; roadblocks to health care 41–​2; spirituality and religiosity in 77–​80; use of statistics and economics to make decisions 39–​42; and waste of resources 33–​4, 36 health insurance see insurance Health Services Research 44 Hippocratic Oath 55 Holmes, Seth 44, 147 hospices 2, 40, 43, 104, 115; “anti-​ hospice” feelings 7, 60, 67, 109; as the

Index  169 facility for end-​of life care 6, 35, 46, 47, 68, 69, 87, 106, 117, 125; fining for patients having extended stays 33–​4; at home hospice care 6, 47, 68, 88, 93, 109, 117; within hospitals 34–​5 hospitalists 40–​2 hospital stays: families desiring family member to stay in the hospital 104–​7; LACE score used to determine 107 Howard, Heather 22 Huffington Post 76 Hui, David 5 humanity, role of in end-​of-​life care 88–​93, 145 Hunt, Linda 22 identity formation 24; see also Muslim identities; religious identity: dying body, becoming, and identities 11–​14; fluid nature of 96–​7; as a life-​long process xviii–​xix; and transformation 20–​1 Idrisi, Dr. 59, 61, 92, 93, 95–​6, 107–​10, 130, 131; Ali’s praise for 75–​6, 112–​13, 143; seeing Muslim patients 10, 79–​80, 107, 141 Ige, David xiv imams see also Mahmoud, Imam; Suleiman, Omar; Yousef, Imam: on assisting families of dying patients 133; on caregiving preferences of Muslims 69–​70; on choosing a “believer” physician 118; on end-​of-​ life care 60–​5, 110–​12; on home health care rather than hospital care 81; on not over-​utilizing resources 65 IMANA (Islamic Medical Association of North America) 17, 58–​9, 62, 69, 102 immigrants 58, 133, 134, 146, 150; children of Muslim immigrants 85, 99, 100, 111–​12, 128, 129, 134, 149; example of premature infant and cross-​cultural misunderstandings 137–​9, 141, 144, 147, 152; and identity construction 134; mourning and death 130–​1; and “structural entanglements” 151 infant in neo-​natal intensive care unit 137–​9, 141, 144, 147, 152 Inhorn, Marcia xvi, 10, 22 insurance 22, 23, 39; see also Medicare: and hospital stays due to childbirth

137; impact on patients 42, 92, 105, 152; Islamic debate about 48–​50 ISIL (Islamic State of Iraq and the Levant, or Daesh) 76 Islam see also Muslim identities; Qur’an: and anthropology and health care 21–​3; “authenticated” Islam 21; as both a religion and culture 145; culture and interpretations of Islam 5, 6, 56, 89, 99, 102; on death and dying 8, 16–​18, 25, 54, 58, 149–​50; debate over health insurance 48–​50; and end-​of-​life care 53–​71; on end-​ of-​life care 107–​10; heterogenous and diverse nature of 55–​7, 143, 146; and the honoring of elders 67; “Islamic point of view” 113; legalistic nature of 143; misconceptions of in the US 148; no coherent Islamic theology 22; permitting medical interventions to alleviate suffering 125; “as a way of life” 13 Islamic Horizons (magazine) 62, 65–​6 Islamic law 53, 110; on burial practices 120–​1; on health insurance 48–​9 Islamic Medical Association of North America (IMANA) 17, 58–​9, 62, 69, 102 Islamic medical ethics 84, 143–​4 Islamic Society of North America (ISNA) 62, 65–​7 Islamophobia 98, 134, 135 “Islam Question and Answer” (website) 16 ISNA (Islamic Society of North America) 62, 65–​7 Japan, health care in 4, 47 Jarmakani, Amira 143 Joseph, Suad 11 Journal of Pain and Symptom Management 5 Kaufman, Sharon 35, 43–​4 Keimig, Rose Kay 68 Kennedy, Ted xiv Khalid (a “good” Muslim child and a dying father) 101–​7, 116 Killawi, Amil 113–​15 Kleinman, Arthur xvii, 144–​5, 147 Kobeisy, Ahmed Nezar 66, 67 Kochar, Mahendr 79 Koenig, Harold 57, 58

170 Index Kreps, Joel Ibrahim 43 Krout, Robert 5–​6 Kurth, Laura 55–​6 LACE score (length of stay, acuity of the admission, co-​morbidities, and emergency department visits) 107 Laird, Lance 23 Lamb, Sarah 3, 6, 44 Lassen, Aske Juul 3–​4 Lawrence, R. E. 79 “learning how to live while dying” xv, xvii Leonardo da Vinci 38 life-​support 15, 35, 78 “Living Will” 59 Lock, Margaret 4, 36, 37 Locke, Peter 14 long-​term care facilities, Muslim views on 67, 68, 71 Lucchetti, Giancarlo 77 Mahmood, Saba 122 Mahmoud, Imam 127; on “Black lives matter” protests 132–​4 MAID see aid-​in-​dying (AID) or medical aid in dying (MAID) Maine and End-​of-​Life legislation xiv Majma al-​Fiqh al-​Islami (The Fiqh Academy) 49 Making Health Care Whole: Integrating Spirituality into Patient Care (Puchalski and Ferrell) 77 Malinowski, Bronislaw 55 Mandaville, Peter 10, 139–​42, 150 Marx, Karl 91 Maryland Against Physician Assisted Suicide coalition xiv Maryland and End-​of-​Life legislation xiii–​xiv Mattson, Ingrid 22 McCain, John xiv medical aid in dying see aid-​in-​ dying (AID) or medical aid in dying (MAID) medical anthropology xvi, 14–​15, 22, 36–​7, 153 medical decision making and religious beliefs 75–​94 medical insurance see insurance Medicare 19, 33–​4, 45–​7, 49, 104, 105, 106

Merriam-​Webster definitions of active and dying 4–​5 Meryem (chaplain) 64–​5, 120, 145–​6 Mexico, medical research in 38–​9 Mikkelsen, Henrik 3–​4 MINNPOST (newspaper) 145 Mir, Dr. 42–​3, 55, 57, 60, 81 Mir, Shabana 99, 134 Montana and End-​of-​Life legislation xiv Morocco and reproductive health research xvi, 23, 39, 76 Moser, Debra 139 Mulligan, Jessica 23 Muslim Advocates (organization) 152 “Muslim ban” 13 Muslim burial practices 120–​2, 127–​35; impact of COVID-​19 on 121; place of burial 127–​31, 133–​5; preparing the body and timing of burial 127 Muslim Council for Religious and Racial Harmony 121 “Muslim” entrepreneurs program as example of “exceptional” treatment 140 Muslim identities see also Islam; Muslim burial practices; Qur’an; religious identity: adult children caring for dying parents 95–​116; Canadian Muslims 100; caregiving preferences of Muslims 71; challenges for families of dying patients 117–​35; changing landscape of caregiving preferences 67–​71; children of immigrants who came as adults 99; choosing the place of burial 135; creating and transforming of 11–​12; and crisis of faith 98; debate over health insurance 48–​50; and decision making process 57; dying body a central part of formation of 13–​14; and epigenetic inheritance of stress 24; example of premature infant and cross-​cultural misunderstandings 137–​9, 141, 144, 147, 152; factors that produce identity 151; fluid nature and forces that shape 96–​8; “good” Muslim child, conception of and expectations for 101–​7; health care having different assumptions about Muslim and Christian patients 142–​3; high cost of health care 48–​50, 151; importance of family unit 81–​2, 84, 90, 95–​116, 101–​7; and interactions with US

Index  171 health care system 5, 8, 20–​2, 50, 57–​8, 97, 100–​1, 110, 114, 123, 149–​51; Muslim Americans trying to find identity 99; and Muslim healthcare providers 10, 12–​13, 20, 75–​94; and Muslim interactions with US health care system 8, 20–​2, 57–​8, 97, 100–​1, 110, 114, 123, 149–​51, 152; race and ethnicity statistics 148–​9; and relationship to death 1, 9, 15, 66–​7, 69; September 11, 2001, impact of 1, 2, 10, 12, 99, 100; what it means to be Muslim in the US 8, 26; women’s practices that impact on self and identity 122 Muslim physicians see also Bashara, Dr.; Doctors Abbasi, Bashara, Fudadin, Hamed, Idrisi, Mir, Nasr, and Patel: on advanced directives 59; on caregiving preferences of Muslims 67–​70; on categories of actions in Islam 53, 56; choosing a Muslim doctor 10, 12–​13; discrimination felt by 23; on end-​of-​life care 31–​3, 42–​3, 57, 60–​1, 81; on health care and Islamic law 53–​71; Muslim medical providers religious beliefs shaped by their practice 75–​94; on not over-​utilizing resources 65; religious identities among Muslim physicians 20; teachings of Islam on illness and death 54–​5 Myers, David xiv–​xv, xvii, xviii Nasr, Dr. 80–​4, 89, 92, 93, 130 Netflix 9 Newborns’ and Mothers’ Health Protection Act of 1996 (NMHPA) 137 New Jersey and End-​of-​Life legislation xiii Newman, Jessica 39 New York Times (newspaper) 33–​4 Nguyen, Vinh-​Kim  36, 37 Nichter, Mark 37 NICU see infant in neo-​natal intensive care unit NMHPA (Newborns’ and Mothers’ Health Protection Act of 1996) 137 Nnamdi, Kojo xiii, xv nursing homes 93, 108; deaths in 46, 47; long-​term care facilities 67, 68, 71; and Muslims 67–​9, 70, 71, 102–​3; skilled nursing facilities 47, 102, 123, 125

Obama, Barack 22, 45–​6 O’Brien, John 122 OCOCA (Our Care Our Choice Act (Hawaii) xiii–​xiv OIC (Organization of the Islamic Conference) 49 Oregon and End-​of-​Life legislation xiv Organization of the Islamic Conference (OIC) 49 organ transplants 119–​20, 124, 130 “Orientalist caricatures” 143 Othering of Muslims 24, 143; see also stereotyping patients Our Care Our Choice Act (OCOCA) (Hawaii) xiii–​xiv Padela, Aasim 113–​15 pain control, Muslim views on 62, 125–​6 Palin, Sarah 46 palliative care 5, 7, 18, 43, 69, 77, 103, 151 Parvez, Fareen 134 Patel, Dr. 43, 88–​93, 96, 97, 99–​100, 145, 147–​9 Patient Centered Medical Home (PCMH) 34 “Patient Choice and Control at End-​of-​ Life” Act (Vermont) 38 PCMH (Patient Centered Medical Home) 34 Pendergrass, Shane xiii, xiv Peres, Prieto 77 Permanent Committee for Islamic Research and Issuing of Fatwas (Saudi Arabia) 32 “Physician Imprisonment Act” (HB 284) (Montana) xiv Pope, Thaddeus xiii Porter, Dorothy 39 “Protecting the Nation from Foreign Terrorist Entry into the United States” (Executive Order 13769) 13 Psalm 23 2 Puchalski, Christina 77–​8 quality of life 33, 69, 77, 87, 95, 124, 138, 148 Qur’an 54, 55, 60, 61, 67, 76, 83, 84, 142, 148; see also Allah (God); Islam: on bearing another’s burdens 97–​8; on beginning and ending of life 59; on burial practices 120; on care of aging parents 69–​70; finding comfort

172 Index in 1, 64, 109, 123, 142, 143; God not wanting to burden anyone 65; on life, death and suffering 58; on mercy 70; and sacredness of life 54; and seeking knowledge 63; on vulnerability 66 Rahma (adult child’s faith and care of dying mother) 107–​10, 112, 142, 143 Rechtman, Richard 149 religiosity see spirituality and religiosity and health care (S/​R) religious identity xvii, 8–​10, 26, 115–​16; see also Muslim identities: challenges for families of dying patients 117–​35; death not the end of religious identity 12; dying and defining faith 107–​10; generational differences 112; interactions with health care system impacting 8, 11, 20–​2, 123, 140, 143; intersection of race and ethnicity with religion 114; Muslims and Christians treated differently (see cultural differences) Ribera, Joan Muela 141–​2 Riley, Krista Melanie 100, 101 Rivers, W. H. R. 36–​7 Rogers, Ada 142 R/​S see spirituality and religiosity and health care (S/​R) ruqya (Islamic healing) 83–​4 ruqya shariya (lawful incantation) 83 Sachedina, Abdulaziz 55, 66, 67, 125 Saeed, Fahad 94 Sajid, Dr. Abduljalil 121 Salafism 76 Salmoirago-​Blotcher, Elena  79 Sargent, Carolyn xvi Saudi Arabian end-​of-​life care 31–​2 Scheper-​Hughes, Nancy 2–​3, 7, 42 Schwennesen, Nete 3–​4 Seale, Clive 20 Seattle, Washington, end-​of-​life research 6 Senzai, Farid 23 September 11, 2001 10, 12–​13, 23, 24, 99, 100, 148 Serour, Gamal 10 Shamoon, Zafar 81–​2 Shari’a 110 Shi’a (Shi’i) Islam 17, 63 Shore, Cris 40–​1 Siddiqi, Muzammil 62

Siddiqui, Ejaz 57, 58 “situated knowledge” 113 skilled nursing facilities see nursing homes Smith, Will xiii social determinants of health 147 Society Must be Defended (lectures by Foucault) 39 sociocultural anthropology 15 Sökefeld, Martin 11 spirituality and religiosity and health care (S/​R)  77–​80 statistics in medicine, used to make decisions on patient care 39–​42 stereotyping patients xvii, 10, 13, 97; see also “exceptional,” use of term for Muslim patients Strauss, Anselm 100 structural competency 24–​5, 147 “structural factors” 22, 100, 150, 151 Study to Understand Prognoses and Preferences for Outcome and Risks of Treatment (SUPPORT) 45 “successful” aging 44 suffering 44, 77, 125; Dr. Bashara on meaning of 84–​8; Islam on 32, 58, 62, 69, 71, 126; Islam permitting medical interventions to alleviate suffering 125; prolonging of pain and suffering 3, 19, 35, 66; using culture as an explanation for 150 Suleiman, Omar 98 Sultan, Maryam 59 Sunni Islam 17, 76 SUPPORT study 45 Tayeb, Mohamed 123–​4 terminally ill xv, xviii, 5, 7, 11, 60, 110–​11, 115; see also end-​of-​life: and hospice care 6, 35; legislation about xiii–​xiv, 38; and removal from life support 16, 35, 43, 59, 62; and waste of resources 33 TFHCOP (The Future of Health and Care of Older People (Tayeb et al)) 123–​4 trauma, impact of 24, 38, 44, 108; “cultural trauma theory 23, 149 Tremayne, Soraya 22 Trobriand Islands study 55 Trump, Donald 13, 24, 149 “Two Views of the Skull” (Leonardo da Vinci) 38

Index  173 Unruth, David 112 US News & World Report (magazine) 41 VandeCreek, Larry 11 Van den Branden, Stef 54 Vermont and End-​of-​Life legislation xiv Virginia Tech xvi, xviii Vivanco, Louis 20 vulnerability, defining and applying concept of 26, 135, 140–​2, 147; Qur’an on 66 Waheed, Abdul 81–​2 Wahhabism 76 Waitt, Gordon 16 “wall of faith” 91, 96 Washington (state) and End-​of-​Life legislation xiv

Washington, DC 17; see also End-​of-​ Life research project; End-​of-​Life legislation xiv waste of resources 33–​4, 36; over-​usage of technology 53 Wentzell, Emily 38–​9 Wilson, Michael 20 Wright, Susan 40–​1 xenophobia 23, 134 Yale Daily News 120 Yaqeen Institute for Islamic Research 98 Yousef, Imam 54, 110–​12, 148 Zaidi, Danish 78 Zhang, Yan 68 Zimeri, Saed 56–​7 Zitter, Jessica 9