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Death and Dying in India
 0415403170, 9780415403177

Table of contents :
Cover
Title
Copyright
Contents
Preface
Acknowledgments
1 Poverty of dying in India: a comparative landscape
2 Dying in the homeland
3 Are Indian hospitals good places for the dying elderly?
4 The rhetoric of dying in home
5 Is palliative care the answer to care for the dying elderly in India?
6 The failing empirics of biomedicine in dying matters
7 End-of-life care: Retrieving death from the zone of obscurity
Index

Citation preview

Death and Dying in India

Most aged in India are experiencing a highly protracted death in hospitals, entangled in tubes and machines. Such ‘medicalized death’ entails huge psychological, social and financial costs for both patients and their caregivers. There are also many who are dying in abject neglect. However, government response to end-oflife care has been almost negligible, and there is an acute information deficit on dying matters. This book examines different settings where elderly die, including hospitals, family homes and palliative set-ups. The discourse is set in the backdrop of international attempts to restructure and reconfigure the health delivery system for aging population. It makes critical commentaries on global developments, offers state-of-art reviews of recent advances and substantiates and corroborates facts by personal narratives and case histories. The book overcomes a segmental understanding of the field by weaving various sociological, medical, legal and cultural issues together. Finally, the authors critically examine biomedicine’s potential to meet the complex needs of the dying elderly. In an attempt to bring cultural sensitivity in end-of-life care, they explore the lost Indic ‘art of dying,’ which has the potential to demedicalize death. Increasing public sensitivity to poor dying conditions of the elderly in India and facilitating changes to improve care systems, this book also demonstrates the limitations of the Western specialization of death. It will be of interest to academics in the field of Medical Sociology/Anthropology, Medicine, palliative care, Public Health and Social Work, Social Policy and Asian Studies. Suhita Chopra Chatterjee is a Professor in Sociology in the Department of Humanities and Social Sciences, Indian Institute of Technology Kharagpur, India. Her current area of interest is in the field of Death studies. She is the lead editor of Discourses on Ageing and Dying. Jaydeep Sengupta is a Doctoral candidate at the Indian Institute of Technology Kharagpur, India, and is formally trained in Anthropology and Development Studies. His areas of interest are Public Health and End-of-Life Care.

Routledge Contemporary South Asia For a full list of titles in this series, please visit www.routledge.com

71 Capitalist Development in India’s Informal Economy Elisabetta Basile 72 Nation, Constitutionalism and Buddhism in Sri Lanka Roshan de Silva Wijeyeratne 73 Counterinsurgency, Democracy, and the Politics of Identity in India From warfare to welfare? Mona Bhan 74 Enterprise Culture in Neoliberal India Studies in youth, class, work and media Edited by Nandini Gooptu 75 The Politics of Economic Restructuring in India Economic governance and state spatial rescaling Loraine Kennedy 76 The Other in South Asian Religion, Literature and Film Perspectives on Otherism and Otherness Edited by Diana Dimitrova 77 Being Bengali At home and in the world Edited by Mridula Nath Chakraborty 78 The Political Economy of Ethnic Conflict in Sri Lanka Nikolaos Biziouras 79 Death and Dying in India Ageing and End-of-Life Care of the Elderly Suhita Chopra Chatterjee and Jaydeep Sengupta

Death and Dying in India

Ageing and End-of-Life Care of the Elderly Suhita Chopra Chatterjee and Jaydeep Sengupta

First published 2017 by Routledge 2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN and by Routledge 711 Third Avenue, New York, NY 10017 Routledge is an imprint of the Taylor & Francis Group, an informa business © 2017 Suhita Chopra Chatterjee and Jaydeep Sengupta The right of Suhita Chopra Chatterjee and Jaydeep Sengupta to be identified as authors of this work has been asserted by them 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 utilised 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: Chatterjee, Suhita Chopra, author. | Sengupta, Jaydeep, author. Title: Death and dying in India : ageing and end-of-life care of the elderly / Suhita Chopra Chatterjee and Jaydeep Sengupta. Other titles: Routledge contemporary South Asia series ; 119. Description: Abingdon, Oxon ; New York, NY : Routledge, 2017. | Series: Routledge contemporary South Asia series ; 119 | Includes bibliographical references and index. Identifiers: LCCN 2017001761 | ISBN 9780415403177 (hbk) | ISBN 9781315228884 (ebk) Subjects: LCSH: Death—India. | Aging—India. | Terminal care—India. Classification: LCC BF789.D4 C495 2017 | DDC 306.90954—dc23 LC record available at https://lccn.loc.gov/2017001761 ISBN: 978-0-415-40317-7 (hbk) ISBN: 978-1-315-22888-4 (ebk) Typeset in Times New Roman by Apex CoVantage, LLC

Contents

Preface vi Acknowledgmentsx 1 Poverty of dying in India: a comparative landscape

1

2 Dying in the homeland

23

3 Are Indian hospitals good places for the dying elderly?

40

4 The rhetoric of dying in home

69

5 Is palliative care the answer to care for the dying elderly in India?

98

6 The failing empirics of biomedicine in dying matters

122

7 End-of-life care: Retrieving death from the zone of obscurity

138

Index

157

Preface

In the wake of present demographic and epidemiological changes in India, most aged are experiencing highly protracted dying, entangled in tubes and machines in acute care hospitals. Such ‘medicalized death’ entails huge psychological, social and financial costs for both patients and their caregivers. There are also many who are dying in abject neglect in the absence of adequate social-legal provisions for end-of-life care. Unfortunately, the Indian government’s response to end-of-life care has been almost negligible despite it being identified as a global public health priority by the World Health Organization. Serious academic response to death and dying of the elderly has also not been forthcoming due to preoccupation of the scholars with ‘active aging’ framework. This has led to an information deficit since factors related to improving quality of life in end of life are different from those involved in quality of death and dying. Some recent large scale comparative studies such as the Lien Foundation reports (2010, 2015) suggest that India rates poorly on the quality of dying. These reports set the context for present explorations attempted in this book. The aim of the book is to improve the evidence base, build public sensitivity to poor dying conditions of the elderly in India, facilitate changes to improve care systems, and make death and dying a public health agenda. It intends to give the reader a comprehensive understanding of international developments in end-oflife care. Yet, the limitations of the ‘Western specialization of death’ are made fairly evident in order to direct attention to the lost Indic art of dying. Although the book is primarily about dying of the elderly in India, the discourse is set in the backdrop of international attempts to restructure and reconfigure the health delivery system to meet the recent trend of aging characterized by longterm illnesses and protracted periods of functional decline before death. This is motivated by the understanding that informed decision-making could be assisted by comparing and contrasting care systems around the world. However, different epidemiological and cultural contexts do demand distinct approaches, and each country has to evolve and review its own strategy, especially since even the most efficacious model suffers from several drawbacks. We have tried to make critical commentaries on global developments, substantiated arguments with secondary evidence incorporating up-to-date research and have corroborated facts by personal narratives and case histories. Some issues are distinctly sociological

Preface  vii while others are medical and legal in nature, and demand considerable expertise in interdisciplinary research. We have tried to redress the imbalance stemming from segmental understanding of end-of-life care and have woven under one cover various sociological, medical, legal and cultural issues. To us, this represents a major advancement in the way medical sociologists and anthropologists in India are carving a new niche for themselves within more interdisciplinary forums. However, despite our best intentions, some issues have not been able to command the attention they deserve in end-of-life care because of paucity of data in the Indian context. The introductory chapter initiates the debate on death and dying by citing Lien Foundation reports (2010, 2015) that depict the poor quality of death and dying in India. As further evidence, the chapter draws attention to the plight of Aruna Shanbaug, who even at the age of 67, failed to evoke an adequate legal response to her long vegetative existence after a brutal rape in her younger days. To assist the reader’s understanding of the poor dying conditions of the elderly in India, we have presented a quick but critical overview of end-of-life care strategies adopted by western countries. This is followed by a presentation of the basic end-of-life Health Care environment and availability of related health services for elderly in India. The major arguments centre on a weak public health delivery system which makes coordinated care difficult for the elderly. In addition, limitations of existing government policies and programs for the elderly, which insufficiently address geriatric care, are also briefly covered. The contents prepare the reader for greater appreciation of challenges inherent in different care settings in subsequent chapters. Three settings  – hospitals, homes and palliative settings where elderly die  – are examined, and the complexities involved in each of them are addressed in detail. The first setting to be explored is the hospital where most elderly die. Recent developments in end-of-life care, issues and debates – clinical, ethical and social, benefits and harms stemming from innovations involving care pathways, DNR protocols, advance directives and application of bioethical principles are discussed. As one navigates through these, the contrasting and pitiable situation of elderly dying in Indian hospitals becomes distinctly clear. It is evident that service conditions have not been altered to meet the needs of people with chronic and progressively deteriorating conditions. Absence of guidelines for withholding and withdrawing life support, poor prognostication, inadequate admission and discharge policies, all serve to highlight the plight of the elderly. Many are left dying in the ‘technological wasteland of intensive care units’ which increase their vulnerability to infections. Others are discharged to family homes where paltry care provisions exist and complicate the dying experience. Family homes are the most common places where the elderly die; however, in India homes are not part of the care continuum and dying at home may be difficult and messy. The fragmented state of home care contrasts with the situation in many industrialised countries which have addressed the role of home and community care in their health delivery system to ease physical and financial pressures on hospitals, lessen dependence on institutional care and respect consumer

viii  Preface preferences for care at home. Many countries have passed national Long Term Care legislations to support ageing and dying at home and to support home carers through various programs. Ancillary support structures like assisted living facilities, nursing homes and hospices take up care tasks when dying at home becomes difficult. In the absence of such integrated home health care management, dying at home in India raises complex problems for aged and their caregivers, many of whom lack skills and resources to deal with dying issues. Absence of palliative networks complicates the situation further. Palliative care undoubtedly has the potential for meeting end of life needs of the elderly. It has made significant contribution in community care and has become an important aspect of health care worldwide. Recent advances have also been made in Palliative aged care involving the combined expertise of gerontology and geriatric care. Unfortunately, both palliative and geriatric medicine are currently insufficiently developed in India to extend their principles and practices to aged care. Barring a few exceptional success stories in southern India, it has remained limited in scope. By and large, it also reflects a predominantly western approach. A distinct specialty, often at crossroads with mainstream medicine, it appears to us to be strangely co-opted by the field of biomedicine. It is clinical in nature, mostly cancer-specific and has a poor service-mix. Moreover, its link with geriatrics and indigenous medicine has not been well explored. In short, it seems palliative strategies need considerable modification to be congruent to Indian conditions. Government support to palliative medicine in terms of advocacy, organisational strategies, statutory funding policies and linkage with the ongoing National Health Mission also needs improvement. Finally, attempts at improving quality of death and dying needs to take into account the cultural context. Death though physiological in nature, is imbued with deep cultural meanings. Biomedicine itself is a cultural construction and its trained incapacity to accept death is rooted in western philosophical perspectives on human finitude, body and its destruction. Recent scholarship suggests that its approach is more geared to acute conditions, and alternative responses are needed to meet present demographic changes involving ageing and prolonged dying. Biomedical principles and practices also need considerable modification in cultures such as India which have different notions of ageing, death and dying. Age-specific nuanced meanings of autonomy, choice and dignity among elderly need to be understood and appreciated. The critical inquiry into biomedicine is likely to set the mood for greater appreciation of Indic approaches to aging and the dying. Some of these approaches incorporate principles of indigenous medicine and spirituality, while others fall outside the medical gaze and have the potential to de-medicalize death. Deep in our hearts, we nurture the need to visualize a program for the aged and the dying in India which does justice to a person’s last journey in life, without depending on medically sanctioned methods of tackling illness, disease, suffering and death. We have briefly explored the lost ‘art of dying’ and tried to figure out how cultural sensitivity may be woven in end-of-life care.

Preface ix We hope that the book would provide a good reference for policy makers, professional practitioners and academics in the field of medical sociology/anthropology, medicine, palliative care, public health and social work. It can be a good resource for teachers and students alike by providing information and inspiration for future research. We hope that the large number of social and cultural themes addressed in this book are also likely to sustain interests of readers with diverse backgrounds. The overview of advances in end-of-life care in various countries may help provide a comprehensive understanding of complex issues on death and dying of the aged under one single cover. A comparative treatment of the theme, incorporating both western and Indian examples is likely to make comprehension easier. Complex medical issues are presented to the lay reader in simple ways so as to invite public participation on death and dying. We wish to thank the Ministry of Human Resource Development for funding the project “Improving End-of- Life care of the Elderly through Indic Perspectives.” The present work forms the initial theoretical impetus for empirical research we have already initiated in different settings. A special thanks to Prof. Joy Sen who provided the platform to activate such projects under the ScienceTechnology-Culture-Heritage interface. Suhita Chopra Chatterjee Jaydeep Sengupta

Acknowledgments

This work is part of SAndhi, a cluster of projects under the Science–Heritage initiative of Indian Institute of Technology Kharagpur supported and funded by experts and representatives of Ministry of Human Resource Development, Government of India. Our thanks to the Ministry and sincere heartfelt gratitude to Prof. Joy Sen, the Principal coordinator of SAndhi for creating an intellectual space for the subproject: “Improving End-of-life care of the elderly through Indic perspectives.” We are thankful to the team of Routledge U.K., who found our effort worthwhile and gave us the opportunity to express our ideas on this complex theme.

1 Poverty of dying in India A comparative landscape

Indians are dying poorly. Most of us know this from our encounter with human mortality in some way or the other, but it also got an academic confirmation with the Singapore-based Lien Foundation’s commissioned study on quality of death. The study based on a survey of 40 countries compared nations under four headings: End-of-Life Healthcare Environment, Availability of End-of-Life Care (EoLC), Cost of End-of-Life Care and Quality of End-of-Life Care, on the implicit assumption that the need of a dying person remains same across different locations.1 It rated India as the least-preferred nation with a low score on all four indices. India held the last position in the overall Quality of Death index – 39th position in the category of Basic EoLC, 35th position in the Availability of EoLC, 39th position in the Cost of EoLC and 37th in the score for Quality of EoLC. In a more recent study, the country rates as 67th among 80 nations based on a new version of the Index, which expands its scope to take into account global developments in palliative care (The Economist Intelligence Unit, 2015).2 For those wary of statistical evidence, Aruna Shanbaug’s case is still fresh in our minds as an illustration. While the battle to legalize euthanasia is highly debated in many discussion forums and the country awaits a deliberated law on the issue, Mumbai’s King Edward Memorial (KEM) hospital had been a witness to the slow aging and dying of a bright, young and capable nurse in their own precinct after being raped and brutally strangulated with a dog chain by a sweeper at the same hospital in November 1973. Aruna was 67 when she died with multiple morbidities, brittle bones, rotting gums and a gasping body. Her life indeed was of little worth, but she had some sort of an iconic value for the nursing staff of the hospital, prompting the Supreme Court to rule out euthanasia as a nonpermissible option in the wake of not having a direct indication of Aruna’s wishes and views. Meanwhile, many, including her biographer Pinky Virani, had considered it as one of the most gruesome stories of slow, painful dying in a country that has not yet laid down a reasoned plan of action for ensuring a dignified exit. She had filed a petition with the Supreme Court of India pleading for euthanasia as a means to terminate Aruna’s life with dignity. After much deliberation, the petition was turned down in 2011, almost a year after it was filed. The rather stoic decision of the court testifies to the nation’s inability to grant peaceful exit for a person who had exhausted all possibilities of dignified living. However, the

2  Poverty of dying in India court permitted passive euthanasia on a case-by-case basis. Recently, in February 2014 the Supreme Court also referred the matter of legalizing euthanasia to a five-bench jury in response to a public interest litigation filed by an NGO in 2008. Aruna’s case would have shocked the conscience of the Indians, as did Karen Ann Quinlan’s tragedy in the U.S. way back in 1976.3 But while the 20-year-old Karen in a comatose condition had moved the Americans to plead for euthanasia in the U.S., the deadly silence of a vegetative and semicomatose Aruna Shanbaug for 37 years has as not yet melted the Indian hearts. It was alleged by some that in contrast to the old and decaying Aruna, photographs of her youthful days were widely circulated in media to craftily hide her suffering in a hospital bed for over three decades. Aruna’s story, emotional and sentimental, also smacks of a poor end-of-life care perspective in India. It betrays an overzealous state with little concern for resources on an almost lost case, the never-to-die attitude of the medical establishment that patronizes such cases while remaining ironically immune and even a silent spectator to the agony of innumerable people dying wretched deaths in hospitals, homes and even on streets, seething with pain and nowhere to go. While it tolerates the use of expensive life-extending technologies on frail elderly in the hi-tech, sophisticated, state-of-art ICUs in acute and tertiary care hospitals in India, many young people die for want of simple remedies. However poignant the stories of such ‘other’ deaths may be, for the time being, we choose to concentrate on end-of-life care for the elderly – a term we reserve for understanding the experience of dying rather than the experience of living with aging. Before we start our explorations in India, a brief contextualization of the issues at the global level would help to appreciate its seriousness and limitations in the homeland.

Dying old in the West With life expectancy having increased to 76 years for men and 82 for women according to the World Health Statistics, 2014 and replacement fertility rate at only 2.1 births per woman in most of the industrialized nations, dying has become inextricably linked with aging as a result of this demographic shift. Global demographic data indicates that number of people aged 65 years or older is projected to grow from 524  million in 2010 to nearly 1.5  billion in 2050, with most of the increase taking place in developing countries (WHO, 2011). The category of the ‘oldest old’ constitutes 12  percent in developed nations and 6  percent in less-developed countries. In many countries, the oldest old are now the fastest growing part of the total population. On a global level, the 85-and-over population is projected to increase 351 percent between 2010 and 2050, compared to a 188 percent increase for the population aged 65 or older and a 22 percent increase for the population under age 65. The global number of centenarians is projected to increase 18-fold in 2050 from what was the number 50 years ago (United Nations, 2000). This growth is particularly significant because people accumulate long-term illnesses as they age, creating greater demand for palliative and end-of-life care services.

Poverty of dying in India  3 But care for the dying elderly is not an easy task. Elderly people die following four different trajectories that at times overlap with one another: (1) sudden – like severe stroke, myocardial infarctions or even accidents, (2) terminal illnesses with gradual decline, (3) organ failure and chronic suffering and finally (4) bedridden with frailty(Lunney, Lynn, Foley, Lipsonand Guralnik, 2003). Lengthy chronic illnesses and long periods of functional decline as in trajectory 2, 3 and 4 make dying a protracted affair. It is obvious that dying from various age-related chronic diseases and multisystemic illness, such as ischemic heart disease, cancer, stroke, arthritis, chronic obstructive pulmonary disease, dementia, depression and several others, make dying not only slow but challenging for the caregivers also. It is, as Nuland suggests, a messy affair (Nuland,1994). Protracted dying, when in hospitals, makes a disproportionate demand on health resources. Hospitals, which are already under pressure and, according to some observers, may become extinct soon due to escalating cost, are overstrained by the influx of a large population of elderly who are fast approaching their endings. An analysis in the U.K. showed that hospital-bed use increases with age, with those under 65 years using one-fifth of a bed day per year, whilst the average for over 85 years is five bed days per annum. Under such circumstances, calls for more prudent use of medical resources appear quite valid. It was 22  years ago that Daniel Callahan in the U.S. argued that expensive medical care needs to be prudently decided and rationed carefully for elderly patients. As a cofounder and President Emeritus of the Hastings Center – a nonpartisan, nonprofit, independent bioethics research institute in New York, Callahan’s highly controversial book Setting Limits: Medical Goals in an Aging Society made the case for limitations of care based on age – a topic that provoked intense, if sometimes hyperbolic, arguments in health care debates (Callahan,1995). But even earlier, Veatch (1979) had made a strong case in favor of a greater distribution of resources for the young in comparison to the elderly. Since these early warning bells, there is now a growing realization that aging of populations gives rise to new issues related to health and care services for the dying and require fresh perspectives on death and dying.

Improving the experience of dying In the first place, as mentioned above, since dying has become more expensive, there has been an expressed concern to reconfigure health policy in a way so as to make EoLC a public health agenda. One way of doing so involves strengthening primary care, which has the potential to provide people with a gateway into the health care system and ensure continuity and coordination of care provided by different levels of health system and professionals. Cross-sectional studies show that primary decision aids can be developed for chronic conditions – Type 2 diabetes, osteoporosis, benign prostatic hyperplasia or even mental conditions, and it is this aspect of its proven success in chronic diseases that suggests the need to develop primary centers in order to improve end-of-life care as a public health measure (Legare, 2009). Subsequently, health forums and organizations, such as McMaster Health Forum (2014) and Ottawa Health Research Institute (2014),

4  Poverty of dying in India have supported patient decision aids to enable them to engage with physicians to prioritize their complex and multiple-care goals. Many primary health facilities are now equipped to deliver palliative care, which is an approach that improves the quality of life of patients and their families facing problems associated with life-threatening illness. It provides prevention and relief of suffering through early identification, assessment and treatment of pain and other problems – physical, psychosocial and spiritual. In addition, it helps patient autonomy in decision-making. Its multidisciplinary approach has special relevance for the elderly who suffer from chronic ailments and multiple morbidities. Unfortunately, for a long period of time, patients received palliative care only when death was imminent, although it professes to neither hasten nor postpone it. This approach was problematic for the aging population and their families who experienced several difficulties and complexities throughout their illness trajectory, almost on a daily basis. The revised model now suggests initiation of palliative care from the early stages of illness, often along with curative treatment. However, health care systems have to be flexible enough to be able to incorporate it within mainstream health delivery (cf. Davies and Higginson, 2004). Incidentally, countries where palliative care (and implicitly end-of-life care too) is at the most advanced level of integration with the mainstream service provision, commendable work has been done within public health framework to deliver geriatric care (Alliance and WHO, 2014). In most European and Scandinavian countries, for instance, care for the elderly is addressed through Long Term Care (LTC) program that is provided through hospitals, nursing homes and social care homes. Conceptually, LTC not only addresses issues related to illness but also caters to needs during end-of-life, at least in terms of accessing high-quality medical services. But robust LTC programs can only be designed on the basis of a very viable primary health care system. Silveria and Forman’s (2012) field study show how Primary Care Providers (PCPs) in the United Kingdom play an important role during EoLC by maintaining a continuity of care for the patients. They assist in planning advanced treatments and EoLC decisions, attending to patients’ emergent needs, bringing flexibility in scheduling appointments, facilitating information-sharing with outside providers and coordinating care within primary care practice to address patients’ needs quickly, and even acting on behalf of their patients. However, in recent times, a specialized approach to disease and treatment has undermined the role and significance of PCPs in many places, and many dying elderly continue to rely heavily on hospitals. But empirical research strengthens a widely favored opinion that primary care is the most suitable option for elder care, as it deals with chronic illnesses, lifestyle issues and preventive care. Endorsing this idea, WHO has collaborated with Health Ministries of different countries, both developed as well as developing nations, to produce ‘Age-friendly PHC Toolkit.’ So far, the toolkit has received support from different agencies and forums like WONCA (World Organization of National Colleges and Academic Associations of General Practitioners/Family Physicians), IAGG (International Association of Gerontology and Geriatrics), IFA (International Federation

Poverty of dying in India  5 on Ageing), HAI (HelpAge International) and the NYAM (New York Academy of Medicine), among others. This venture nurtures the mission to make primary health centers and their caregiver staff aware, sensitive and competent to tackle the growing morbidities of the elderly population. The toolkit suggests comprehensive and integrated care, continuum of care, adequate physical and social environment and upgrading human skills in caring elderly patients as important means to make PHCs age friendly. In addition to the above measures, these countries are making attempts to cut down hospital expenses for elderly by evolving regulatory measures to curtail use of invasive technologies and by devising care pathways. It may be mentioned that by and large, many governments – even those like Britain – have not paid due attention to formal technology assessments and their distribution among different groups of population. Restrictions on the production, use and distribution of medical technologies are weak in most countries in comparison with policies regulating therapeutic drugs, and are mainly advisory rather than binding. As a result, a technology-oriented, expensive and primarily curative biomedicine has been left with little option other than freeing hospitals from the clutter of old and dying people. This is more problematic in those countries that have centralized national health care systems, or where a sizeable chunk of health expenditure is borne by the State. Many advanced countries have therefore developed improved ways of negotiating and identifying death through protocols like Gold Standards Framework (GSF), which reduce unregulated hospital admissions though not compromising on care. The GSF is considered to be a cornerstone of the United Kingdom’s end-of-life care program for letting a person die a ‘good death.’ It is also recognized as ‘best-practice’ in other countries outside the U.K., such as the U.S., Australia, the Netherlands and Belgium. GSF ensures that a high-standard care is delivered. It works through a wellcharted framework extending from primary to tertiary level of care with thrust on coordination of stakeholders at all levels. This essentially includes patients and their family and medical and nonmedical professionals. Uniquely, GSF ensures that out-of-hour care service is available even though it reduces unregulated hospital admissions. It restricts all mindless hospital admissions in the last few weeks of survival and draws all possible resources available at the primary-care level near to the dying persons that are consistent with the persons’ needs and wishes. Practicing GSF in community starts with an accurate prognostication of the person’s survival, which might be as long as few years to as short as few days only. This is followed by close assessment of the dying persons’ pain and other symptoms, and finally, it involves preparation of a care plan considering all risks that might arise in the future. Nationwide audits done periodically to assess the benefits of GSF have shown that it has indeed halved total avoidable hospitalization during end of life while giving maximum care and comfort at the person’s preferred place of dying. In one such audit of 2010 covering seven care homes of Scotland, GSF training program has reduced within a span of one year (2007–8) ‘avoidable hospitalization’ during the last two months of life from 31 percent to 24  percent, ‘related days spent in hospitals’ from 82  percent to 44  percent and

6  Poverty of dying in India ‘total avoidable hospital deaths’ from 15 percent to 8 percent (Hockley, Watson, Oxenham and Murray, 2010). The evidence also points out that by reducing hospitalization it has contributed toward cost savings of National Health Services (NHS) as much as £30–40 million/year/care home. However, the success of EoLC in many countries, particularly the U.K., which figures high in quality of dying, rests on another pivotal structure  – the Liverpool Care Pathway (LCP). Overseen by the Marie Curie Palliative Care Institute, LCP is widely accepted as a best possible model of care for dying persons in the last few hours of life. It was developed by the Royal Liverpool Hospital and the Marie Curie Hospice during the late 1990s. With time its popularity grew. LCP was identified as a model of best practice by several organizations: NHS Beacon program in 2001, the Cancer Service Collaborative Project and the National Endof-life Care Program during 2004–7. It was recommended in the National Institute for Health and Clinical Excellence (NICE) guidelines to facilitate supportive and palliative care for patients with cancer in 2004 and also got included in the ‘Our Health, Our Care, and Our Say’ white paper in 2006 as a strategy worth rolling out across the U.K. Often considered in tandem with GSF, it becomes more important when dying is irreversible. It then sets to review all clinical procedures and aligns them in accordance with the patient’s comfort and ease. This might result in discontinuation of forceful feeding (although drip is sometimes allowed on caseby-case basis), symptom control or even life support. Apart from the U.K. where LCP originated, it is practiced in 21 different nations (Murphy, 2011; Constantini, Ottonelli and Canavacci, 2011). Credibility of LCP is, however, questioned by many including Freemantle and Seymour (2012) through their empirical research in three oncology wards of a hospital in England. The case studies that the authors present show how patients suffered at the moment of dying even though the physicians and the nurses of the hospital accepted LCP. Inaccurate assessment and identification of the time of dying, poor orientation among out-of-hours doctors and constrained communication were the chief factors that caused the failure of LCP. Good end-of-life care in the West also rests heavily on Advanced Directives (ADs), which were developed in the early twentieth century as a means to consider patients’ opinions and wishes in medical decision-making. By the middle of the century, when death movement became strong, ADs in the form of ‘Living Will’ became prominent with consumer rights overtone. ADs have been formulated in different ways in many countries. In the U.S., there are three types of ADs: (1) Power of Attorney, a very strong legal document assigning a person to issue Cheques, handle business or even apply to Medicaid for nursing costs on behalf of the patients, (2) Health Care Surrogates that are exercised in making health care decisions during accidents or disease when the person is unconscious. It gets nullified as soon as the person gains consciousness and (3) ‘Living Will’ to give authority to a person to make health care decisions in the event of losing cognitive senses. This becomes applicable only if the attending physician ascertains the person to be in a vegetative state. Apart from these measures, governments in the West developed structures to deinstitutionalize dying. Unable to withstand extreme financial pressures involved

Poverty of dying in India 7 in protracted dying in hospitals, it became imperative to reconfigure the home to make aging and dying-in-place a reality. For this, the home had to be reinstated and reconfigured. Other disciplines like architecture helped to provide necessary modifications and barrier-free designs for frail and disabled older people. These homes were equipped with new technologies in assisted living, which were to substitute somewhat for lack of caregiver support to make people age and die comfortably. Since caregivers were poorly equipped for such complicated dying, and since the social fabric to support such caregiving had already eroded, ancillary structures involving Long Term Care of the elderly were developed. These include Nursing Homes, Assisted Living Facilities (ALF), Continuing-care retirement community and Residential homes for the elderly. In the U.S., the ‘National Survey on Residential Care Facilities’ by Center for Disease Control and Prevention (CDC) found that there were approximately 31,100 ALFs for elderly contributing roughly 9,72,000 beds for elderly (Park-Lee et al., 2011; Centre for Disease Control and Prevention, 2010). Many of these serve the elderly till the very end, when distinct institutions for dying – the hospices – take over their caring tasks. Started in 1967 by Cicely Saunders, hospices were, and still do, cater primarily to cancer patients but have recently started expanding their scope to include geriatric population – a move that owes much to the development of geriatric medicine. The latter’s holistic approach emphasizes psychological intervention, functional recovery, palliative treatment and hospice care through a multidisciplinary focus involving inputs from gerontology, medicine, sociology, ethics and environmental sciences. Hospices are known for providing expert medical care, pain management and emotional and spiritual support, which is in accordance with patients’ needs and wishes. In most cases, care is provided in the patients’ home but may also be provided in freestanding hospice centers, hospitals, nursing homes and other Long Term Care facilities. In 2012, an estimated 1.5 to 1.61  million patients received services from hospices in America (National Hospice and Palliative Organisation, 2013) mostly at patients’ place of residence (66 percent), followed by private residence (41.5 percent) and Hospice Inpatient Facility (27.4 percent). However, only 6.6 percent received the facilities in acute care hospitals in 2012. In the U.S., 83.4 percent of hospice patients were 65 years of age or older and more than one-third of all hospice patients were 85 years of age or older. Globally, people aged above 60 years are mostly in need of palliative care (69 percent) in comparison to younger adults (25 percent) and children (6 percent) (Worldwide Palliative Care Alliance, 2014). Surprisingly, only 1 in every 10 persons receives relief from pain and other symptoms. A recent report of 2012 from Muslim majority countries shows the huge unmet need for pain management. Out of 15 countries, only 2 have adequate consumption of opioids; for the other13 countries, the figure is virtually nonexistent. Moreover, whereas the U.K. and the U.S. have 1,397 and 3,300 hospice-palliative care services respectively, Bangladesh, Pakistan, Egypt, Sierra Leon and Saudi Arabia have 1 to 3 of such services. Malaysia is an exception with 35 services catering to a population of 685,000 (Aljawi and Harford, 2012).

8  Poverty of dying in India

Limitations of new measures However, despite all these measures, it is not clear whether the experience of dying when old has improved significantly. The elderly continue to die in hospitals and hospital-like settings. Japan rates extremely high on hospital deaths and many elderly are seeking their final weeks in hospitals. Elsewhere, too, a large number of elderly people still die in acute-care settings – the showhouse of biomedicine’s curative potential – entrapped and entangled in tubes and machines. Broad et al., 2013 compared and presented figures about the place of death of people above the age of 65 years for 21 communities. Their research shows that 69  percent of elderly in Japan died in hospitals (for the years 2000–2004); in Korea, 67  percent (2009); Malta, 66  percent (2001–2010) and Czech Republic, 61 percent (2009). Australia and Belgium have 54 percent (2005 and 2001, respectively). The U.S. has 42 percent elderly dying in hospitals and 29 percent dying in residential aged-care facilities and an equal number in ‘other facilities including private homes’ (2005). Among Asian countries, Singapore has large a large number of elderly dying in such facilities – 35 percent (2006) – but 57 percent still die in hospitals. It is evident that hospitals are still predominantly the place of death for elderly whose preference is to die at home. (Higginson and Sengupta, 2000). Unfortunately,a National Audit Office report in the U.K. in 2008 found that 40 percent of patients who died in the hospital in October 2007 did not have medical needs that required them to be treated in the hospital, and nearly a quarter of them had been in hospital for over a month (cf. Marie Curie report, 2013). Survey ratings of overall care across different services – home, hospital, care home and hospice – in the last three months of life in England showed that just 32.6 percent of those whose loved ones died in the hospital felt that their care was excellent or outstanding compared to 53.7 percent (home), 51.3 percent (care home) and 59.1 percent (hospice) (Marie Curie Report, 2013). Next to hospitals in terms of their medicalized approach to death are nursing homes, which continue to be preferred spaces for elder dying. In Canada, they absorb 80 percent of the total public spending. Residential aged-care homes that have the potential to develop as alternate places of death have the lowest shares in all the countries (Broad et al., 2013). Strangely, these countries occupy a high position in quality of end-of-life care ranking attempted by the Lien Foundation report, clearly showing that assessment methods are focused on acute-care settings. Connolly, Broad, Boyd, Kerse and Gott (2014), by analyzing data of National Health Needs for Palliative Care, show that death in hospices is far less (only 6 percent) in comparison to hospitals (34 percent). Unfortunately, while hospitals continue to be the sites of dying for the elderly, they have not been able to sustain improvements attempted in recent times. Most importantly, their ability to provide autonomy to the elderly has been suspect. In fact, the neglect of the elderly patient’s voice is evident in the use of each and every carefully scripted method devised for granting the patient autonomy, particularly the Advance Directives (ADs). Studies in the U.S. show that although

Poverty of dying in India  9 ADs for health care are widely advocated, usage rates among the elderly people are low (Betlatch, 2011). In many developed countries, educational strategies are being designed to increase their use. Over time, strategies to promote ADs have become diverse. For instance, in the U.S. they range from a simple education strategy that aims to generate awareness at the individual level (Wissow et al., 2004) to multiple initiatives that aim at large-scale promotion, completion and use of ADs in decision-making. The latter includes social marketing, communitybased collaborations, publicizing AD repositories, policies to document ADs as mandatory in clinical practice, legal reforms to make them dynamic processes and digitalizing ADs for enhancing their accessibility to caregivers across different settings during decision-making (Office of the Assistant Secretary for Planning and Evaluation, 2008). In the U.S., despite different measures, many patients were found not to participate in advance-care planning, and even when they did, it was not documented in their medical charts. In one study involving the geriatric population, although many had ADs, few found a place in patients’ medical records (Agency for Health Research and Quality, 2011). A large number of physicians were not aware that they existed, and even if they knew that these directives existed, physicians’ compliance was poor (Burkle, Mueller, Swetz, Hook and Keegan, 2012;Yuen, Reid and Fetters, 2011; Kitzes and Domer, 2003). They hardly influenced end-of-life care decisions because they were limited in applicability, were legalistic or simply physically inaccessible (High, 1993). This has provoked patients’anxiety, compelling many to tattoo the directives of ‘Do Not Resuscitate’ on their bodies (Kluger and Aldasouqi, 2013). However, Cooper and Aronowitz (2012) provide a cautionary tale of how such tattoos can actually confuse emergency responders if there is no official documentation of a patient’s values and preferences. The much flaunted care plan – the Liverpool Care Pathway, mentioned ­earlier – has also remained dubious in its intention and even withdrawn in certain places, after being seriously besmirched for hastening death behind closed doors (Devlin, 2009). Allegedly, 130,000 patients died every year in Britain when put to LCP (Baklinski, 2012). In a separate account, Prof. Patrick Pullicino, a trained physician in the U.K., held LCP as an ‘assisted death pathway’ rather than a ‘care pathway’ after one of his very elderly patients survived for nearly 14 more months when put back on life-sustaining technology (Stanford, 2012)! Ancillary structures have also suffered from vacillating outcomes. Health care management issues plague many Long Term Care facilities where elderly meet their deaths, and it seems that there is a smaller expertise in Long Term Care than in acutecare settings (Wunderlich and Kohler, 2001). In 2000, the Atlanta Long Term Care (LTC) Ombudsman Program found that in 23 nursing homes in Georgia, among 80 residents, 44 percent reported abuse, 48 percent complained of being roughly handled and nearly 95 percent witnessed others being abused (Broyles, 2000). The National Ombudsman Reporting System (NORS) provides data on abuses inflicted on U.S. senior citizens in two different set-ups – Nursing Homes and Board and Care facilities: physical abuse (29 percent in nursing homes and 25 percent in Board and Care facilities), psychological abuse (21  percent and 24  percent in Nursing

10  Poverty of dying in India homes and Board and Care facilities, respectively) and resident-to-resident abuse (22 percent in nursing homes and 14 percent in Board and Care Facilities) (Centre for Excellence on Elder Abuse and Neglect, 2012). A separate study by Ben and Ariela (2010) shows that 55 percent of the nursing home staff admitted mistreating residents by way of physical violence, mental abuse or neglect. But such abuse in institutional settings is not restricted to the U.S. alone. It is a global phenomenon now. Although country-wise data is not systematically catalogued for elder abuse in institutional settings in different parts of the world, it can be inferred from opinion surveys that abuse and neglect in LTC is ‘widespread’ (around 47 percent) with nearly 66 percent of the dependent elderly in LTC receiving inadequate care. Country-wise, abuse and neglect is highest in Romania (86 percent), followed by Greece (64 percent), Italy (63 percent) and Lithuania (58 percent) (European Union, 2007). Even in Australia, which seems to have done pretty well in end-of-life care for the elderly, thousands with dementia die prematurely each year because of widespread overprescription of powerful drugs in nursing homes (O’Neil, 2012). In the U.S., despite strict regulations of nursing homes, there are a number of reports and studies documenting low quality of care (Fernandez, 2011). Home care (private residential care), which appeared to be reinstated and reconfigured to make people age and die comfortably, has suffered equally strong setbacks. While the home emerged as an important place to care for the aging person, paradoxically, it has by now lost the distinctive features required for ­caring – presence of close-knit family ties bound by religious sentiments that make caring a moral obligation of sorts. Caregivers, too, suffer stresses of various sorts, and academic and policy concerns are raised about their declining health.4 So going back to community – whatever is meant by the term – implies that Long Term Care provisions have to be provided using a mix of health and social services. Amidst these intense struggles to make dying dignified for the elderly, governments have continued to grapple with the question, Should age be made a special case of euthanasia? In general, this remains a controversial and unresolved issue with different groups, as doctors, nurses, patients and family members all have divergent opinions on it. A  study highlighted complex ethical dilemmas faced by nurses attending terminally ill patients in hospitals. The decision as when to stop further treatment (and initiate physician-assisted suicide) and what constitutes a dignified dying for the elderly seemed to baffle most of the nurses. Many times, conflict of opinion arose between doctors and nurses as the latter helplessly watched the elderly, with no signs of life, fed by means of percutaneous endoscopic gastrostomy (Enes and Vries, 2004). Only a few countries have taken a bold approach to legalize euthanasia, including the Netherlands (legalized since 2002), Belgium (legalized in the same year and extended to include chronically ill children since early 2014) and Luxemburg (permitted since 2008). Assisted suicide is legalized in Switzerland (permitted since 1942), Germany, Albania, Colombia, Japan and in a few states of the U.S., including Washington, Oregon, Vermont, New Mexico and Montana. However, not much is known about elder-specific practices in this regard. It is also not clear how far these medical practices are supported by the public at large with respect to

Poverty of dying in India 11 the elderly. A study of 2,000 Dutch people found that only a ‘significant minority’ back euthanasia. In response to an opinion question, ‘Should euthanasia be allowed for persons who are tired of living without having a serious disease?,’ 21 percent of the respondents agreed, 52 percent disagreed and 27 percent neither agreed nor disagreed. The researchers also found that one-third of the respondents agreed that the very old should be allowed to take a pill that would effectively facilitate death if they desired it, and a further 30 percent were neutral (Ellis, 2013). In a Longitudinal Aging Study, Amsterdam (2001–9), using three samples aged 64 years or older (N = 1284 (2001); N = 1303 (2005); N = 1245 (2008)), an increasing proportion of older people reported that they could imagine desiring euthanasia or an end-of-life pill (Buiting et al., 2012). However, the Dutch experiments, claims and counterclaims make critical commentaries difficult. But it does speak of a country poised for a bold approach toward death and, most importantly, a belief that even the most excellent care cannot prevent the problem for those elderly whose purpose in life is lost. On the other side of the dignity debate, hospice and palliative care have received lukewarm response from the elderly. In 1996, a Gallup Poll, commissioned by the National Hospice Organisation, found that 60 percent of the respondents strongly desired for a comprehensive care program, including coordinated services of physicians, nurses, counselors and other professionals during dying – a service quite similar to one that is provided in hospices. An additional 26 percent were ‘somewhat interested.’ However, to utmost surprise, only 22 percent opted to be admitted to a hospice when asked to choose an institution by name. While mere unfamiliarity with the facility might be a probable reason for this poor score, it nevertheless suggests how these structures are yet to find prominence in elder choices and preferences. The scenario seems to be changing rather slowly, and as Lawton (2000) suggests, the modern hospice movement may have been too overzealous in its critique of the care of the dying in acute hospitals. For instance, in a survey of individuals in 21 European countries, it was found that specialized palliative care on geriatric wards was frequently unavailable except in Anglo-Saxon countries. Palliative care inroads into Long Term Care for dying elderly are also very limited. Palliative care was rarely found in such facilities where most elderly patients die from nonmalignant diseases (Piers et al., 2010). An equally dismal situation prevails in hospitals. For instance, one particular study conducted in a teaching hospital of Japan found that it took as long as 25 days for patients from the day they were admitted to the hospital to come in contact with the palliativecare team for the first time. In comparison, a small group of patients whose pain was accurately assessed could get palliative care within only four days of their admission (Akashi, Yano and Aruga, 2011). Similar findings are reported in studies that find physicians’ unwillingness to lose control of the patients is a major barrier to usher in palliative care within a hospital setup (Melvin and Oldham, 2009). Dr. Glasheen from the University of Colorado at Denver in the Health Sciences Center writes in his blog that ‘fallacious medicine’ unfortunately deprives many patients from receiving palliative care. While ideally one needs to have palliative care for at least six months, patients get only less than a month before they die. Even primary health facilities are found deficient. It has been a general concern

12  Poverty of dying in India among professionals working in the field of pain management and palliative care that patients with terminal illness or even those suffering from advance-stage cancers are underdiagnosed by the primary physicians. Pain and other symptoms remain unrelieved as a consequence of which patients are referred to palliation very late. Thus, the interconnectedness of care structures delivering palliative care remains problematic, although a crying need of the dying elderly.

Dying in Asia In many Asian countries, the struggle to cope with the elderly has been equally intense with an estimated 142 million people, or 8 percent of the population of the WHO SEA Region being above the age of 60 years. At the Yogyakarta interministerial meeting held in 2012, members expressed concern over the possibility of this number increasing twice by 2025, and three times the proportion of 2000 by 2050.5 Two aging Asian giants provide us a picture of the herculean struggle faced on account of this demographic shift. China has a population of over 1.3 billion people, of whom 160 million are 60 and older, the largest aging population in the world. In addition, China’s aging population is estimated to increase at a rate of 5.96 million per year from 2001 to 2020 and then at a further accelerated rate of 6.2 million per year from 2021 to 2050. By then, it is expected that the elderly population will amount to 300 million, representing 30 percent of China’s population. The cohort of oldest-old was 12 million in 2000 and, by 2030, could number over 40 million (Kincannon, He and West, 2005). According to Chinese census (2011), it was estimated that by 2015 there would be 220 million over-sixties, and within 40  years the number would rise to 437  million (Bolin, 2011). To cope with its huge population of elderly people, the Beijing Municipal Corporation since 2001 has been actively trying to adjust its health care policies by implementing a series of measures to set up geriatric hospitals and wards. A  three-level management structure attempts to cope with this increase involving prevention and treatment of chronic diseases, functional rehabilitation – Long Term Care and family attendance at rural and urban community health centers, post-acute rehabilitation, Long Term Care and palliative treatment in specialized geriatric hospitals of every district and, finally, rescue and treatment for acute and serious geriatric diseases in the geriatric sections of all general hospitals, especially in Beijing Geriatric Hospital. However, despite these strategies, researchers have lamented the slow progress of specialized care for the elderly in comparison to advanced countries, lag in medical insurance policy, poor functional management, lack of data base and geriatrics-related health support network (cf. Chen, Yu, Song and Chui, 2010). There are reported cases of elderly struggling to find a nursing home, which are few in number. Often more than 10,000 applicants wait for the 1,100 beds on offer in the capital’s Social Welfare Home, indicating a large unmet need (Moore, 2013). To cope with the increasing demand, Beijing’s 12th Five Year Plan (2011–15) has mapped out a strategy to enable 4 percent of its elderly residents who are physically or mentally challenged and unable to live independently, to be institutionalized, with the rest availing nursing at home or in communities.

Poverty of dying in India  13 Japan has also been struggling with its huge aging population. The Organisation for Economic Co-operation and Development estimates that by 2025, one in three citizens in Japan will be 65 or older, up from 12 percent of the population in 1990. But the country’s pension and national health care systems are too frugal to depend upon. It is estimated that cost for elder care will more than double by 2026, the trend for which is already set since March 2013. The country risks bearing a debt burden of as much as 19.8 trillion yen ($212 billion) on spending for care of the older persons. Failure to adequately handle the situation would result in 470,000 older persons dying a lonely death by 2030. In 2012, a growing demand from elderly for more care provisions from the Government had already instigated violence and claimed 21 lives (Matsuyama, 2013). Japan has also struggled with a high number of elderly people dying in hospitals, and to combat this has, since 2000, worked out a public Long Term Care insurance (Matsuda and Yamamoto, 2001). It owes much to many of the European nations, particularly Germany and Holland, for its health innovations. The program has allowed care managers to enroll a person after careful assessment of the need, decide the care plan and subsequently put the beneficiary into different levels of disability. However, what makes the genesis of LTC in Japan distinct from other European nations is that while in countries of the West an exclusive focus on patient’s autonomy has triggered growth of numerous alternative-care structures beyond hospital and home, Japan has considered home as the primary locus for development of Long Term Care provisions. To a certain extent, this is possible because of a strong stimulus to assisted-device industry and growth in the number of users of care equipment and people seeking home modifications through government-sponsored schemes. The success of assisted technologies is testified by such innovations as Paro, a touch-sensitive companion robot – a sort of high-tech stuffed animal shaped like a seal – for elderly people with cognitive disorders like Alzheimer’s, Nursebots that can lift elderly patients from bed right to the breakfast table and Babyloid, a baby-like robot similar to Paro  – all of which support the new ideology of elder independence. The importance of home as a locus of aging and dying is also supported by deep cultural values of enduring pain and suffering as a human virtue rather than depending on alternate care structures to manage the crisis. But there is also a section of elderly who complain of overloading homes with such mechanized care technologies, resulting in the scrapping down of the country’s biggest robot maker Tmsuk. The growing resentment against technological rather than human care explains frequent cases of lonely deaths, or kodukushi, in Japan with bodies sometimes going undiscovered for weeks or even months. The number of cases is staggering, some 30,000 a year by one estimate. There is also an increasing number of suicides. Almost 10 out of 1,000 people on an average die in Japan’s capital, the world’s most populous metropolis (World Bank, 2015), and nearly 100 commit suicide every day, a sizeable portion of which are made up by elderly (McCurry, 2008). In 2013, the number of suicides were over 27,000, of which over 8,000 were people in their sixties and seventies who took their lives unable to bear the burden of ill health and failing to decide

14  Poverty of dying in India treatment options (see Nippon.com, 2014). Following a massive increase in lonely deaths of elderly in Tokyo in 2008, the government now proposes to conduct an audit of people older than 70 who live alone and in shared households with residents and pass this information to social workers and the police. There are also reported cases of many elderly forgoing use of the traditional tatami mat (a sort of death preparation in Japanese family) and committing suicide. Unbearable agony also compels many elderly to inhale deadly form of hydrogen sulfide gas. In 2007, there were 29 elderly who died in this manner. As of June 2008, 517 people had killed themselves by inhaling the fumes. For those elderly who do not commit suicide, many force themselves to work for the sole purpose of earning enough money to pay for exorbitantly rising health costs (Matsuyama, 2012). Evidently, home dying is not the solution for many Japanese elderly, particularly those who are lonely, too frail or are subject to domestic abuse. There are many who now prefer to die in short-stay homes (tokoyu) or nursing home. Itoko Uchida, 82 years, is just one of the 420,000 Japanese who awaits admission in nursing homes because a sharply degrading social fabric has made her solely dependent on hospitals for care. Itoko has been refused care by her only nephew whom she raised. The Tokyo-born widow is now in the shelter of a nonprofit-making body for old age care (Matsuyama, 2013). Like Itoko, more and more Japanese elderly are compelled to live and die alone as family members live farther apart and as traditional Confucian values of elder care face near extinction. In those cases where elderly live with traditional households, there is a sharp increase in domestic abuse, with 16,599 recorded cases in 2005 alone (Matsuyama, 2013).

Dying when old: what seems to be wrong in the modern era? The above sections show that each nation has handled end-of-life care of its elderly with varying levels of competence. While it is beyond the purview of the present text to scrutinize problems faced by different countries and make in-depth cross-country comparisons, a few broad features may highlight the gap in policy as well as in program implementation. In the first place, innovations and strategies have been guided by WHO recommendations that for a long time failed to address end-of-life care within its ‘Active Ageing’ strategies. WHO’s Aging and Health Program (1995) and the Madrid International Plan of Action on Ageing (2002) emphasized initiatives to improve the health and well-being of the elderly rather than dying issues. For instance, WHO’s philosophy of ‘Active Ageing’ involving three-fold factors  – health, participation and security– seems not to address the question of how it could meet the needs of people with the burden of cumbersome diseases and of people who eventually succumb to them. Even most advanced countries struggle to provide an environment conducive to this philosophy. Very few have been able to integrate end-of-life care planning within Healthy Aging Programs, barring few recent examples like the Centers for Disease Control and Prevention’s Healthy Aging program, which aims at developing a modular online course on Advance Care Planning to help public health and aging service professionals to better serve

Poverty of dying in India  15 older adults and families. Death remains, so to speak, segregated from the discourse of how people are meeting their ends while pursuing the agenda of Active Ageing. Even academic response has been more focused on life-centric issues, and there are many medical sociologists who decry all attempts to treat aging and dying under one rubric (Higgs and Jones, 2009) with the result that there is more data on Quality of life in end-of-life, less on Quality of life in end-of-life care and still less on quality of death and dying.6 Where more evidence has been generated, the quality indicators continue to be developed from the standpoint of a much younger cohort and the conceptual apparatus threatens to fall out of tune with the experience of the dying elderly patients in different circumstances, and with varying levels of functional decline. For instance, concepts like autonomy, independence, choice and dignity continue to be matters of concern to the investigating researchers although they lose their relevance for frail elderly. The central objective of dignity for the dying continue to bother all, while in reality it may be unachievable in the case of those elderly who experience declining physical functions and subsequent loss of self. Pain may not be the predominant part of the dying process as symptoms like delirium, urinary and fecal incontinence and sores and discharges predominate, creating great suffering  – all of which may not be readily resolved by palliative care aimed primarily at pain and symptom management. Notions of control and choice may be difficult when one succumbs to multiple pathologies. Kafetz (2002) observes that the rising expectations of dignity may be unrealistic and may have the unhappy consequence of increasing relatives’ distress and complicating the bereavement process, while the absence of a definable terminal stage often excludes older people from hospice care. As far as program implementations are concerned, most countries have end-oflife programs supported by structures like the hospitals and homes that are not still fully geared for the existing epidemiology. And while new sites of care and dying have been introduced, the corresponding mind-set to accept death has remained elusive with the result that each case of death within systems designed to facilitate it is construed as a failure and a result of system ill-functioning. At times it even raises complex questions of sociopolitical struggle over the distribution of health resources, rights and status of the elderly. The failed case of the LCP may serve as an illustration of sorts. There are more paradoxes at macro-level planning. While caregiving needs intensify for the elderly, there are few caregivers left; as the population in general ages, younger carers are difficult to locate, and as robots take on the care tasks, loneliness somehow still creeps in, leading to suicides, which in turn shakes our conscience while we continue to uphold values of choice and autonomy of elderly decisions. Again, while new Long Term Care structures emerge, lesser skills and management inputs are invested at these sites compared to acute-care settings, and though palliative-care provisions improve, its link with geriatric is extremely slow and somewhat fuzzy. But as mentioned above, the most serious paradox surrounds our entire exercise on end-of-life care without accepting death as an integral part of life. Accepting our finitude has been the single-most challenge in the altered social terrain of a

16  Poverty of dying in India postmodern society. This is most evident in the field of biomedicine. Medical professionals wish not to admit their limited success in combating the inevitable biological decline inherent in aging. To add to the growing prolongevity issues are the amazing feats that science promises to achieve by 2045. Richard Smith, a former editor of British Medical Journal, speaks of Dmitry Itskov, a 33-year-old Russian multimillionaire, whose 2045 initiative of defeating death by transferring a personality into an alternative carrier – a hologram (Smith, 2013). Biomedicine, which promises to become increasingly more technologically driven, can hardly escape the lure of these adventures, and while disciplines like palliative care are outside the scope of mainstream medicine, the element of hope that they offer to those who care for the dying bring them closer to life-sustaining concerns of biomedicine. Twenty years since Callahan asked for setting the limit, the challenge is not whether to set the limit, but how to do so without raising too many disturbing questions and inconsistencies. The task of end-of-life care provision for elderly is likely to be extremely tough for developing countries that are still struggling with infectious diseases affecting younger cohort, hospitals that are short of both equipment and health professionals, and the obligation to follow global policies that are framed primarily in Western contexts. While they struggle with Millennium Development Goals, Western countries have in the meantime marched forward, and there is no reference to how these programs, though intricately affecting the trajectory of dying, would bring into their fold end-of-life care issues and how newly introduced programs on palliative care could be supported when basic public health systems are underdeveloped. Subsequent chapters address the issues in India building on comparisons with the developed world despite clearly acknowledging the limited applicability of the models. These can at best serve not as models for emulation but as roadmaps guiding us in our journey to experiencing the last sunset, carefully avoiding the pitfalls.

Notes 1 A total of 24 indicators are distributed among four important categories: (a) Basic Endof-life Health care environment (includes macro-level indicators like Life expectancy at birth, Old age dependency ratio, GDP per head, percentage of Gross Domestic Product (GDP) spent on health, risk of political instability and human resource for health care during non-emergency admission to hospitals); (b) Availability of EoLC (including availability of hospices/palliative centers, existence of national level palliative care policies, availability of volunteers in EoLC or number of death cases that received EoLC); (c) Cost of EoLC (enlisting indicators like, economic burden at the individual level) and (d) Quality of EoLC (comprising of indicators like public awareness on EoLC, availability of painkillers, training and accreditation of health workers, doctorpatient transparency, government attitude toward EoLC and use of ‘Do Not Resuscitate’ policy). 2 In the 2015 version, the number of countries included has been increased from 40 to 80. The Index, which focuses on the quality and availability of palliative care, is also structured differently from the 2010 version. It is composed of scores in 20 quantitative and qualitative indicators across five categories. The categories are: Palliative and healthcare environment (20  percent weighting, 4 indicators), Human resources

Poverty of dying in India 17 (20  percent weighting, 5 indicators), Quality of care (30  percent weighting, 6 indicators) and Community engagement (10  percent weighting, 2 indicators). The EIU also prepared a supplementary assessment of the need for palliative care provision to enable assessment of the “demand” for such care alongside the quality of “supply” revealed in the main Index. This is based on three categories: the burden of diseases for which palliative care is necessary (60  percent weighting), the old-age dependency ratio (20 percent) and the speed of aging of the population from 2015 to 2030 (20 percent). 3 The case of Karen Ann Quinlan, decided by the New Jersey Supreme Court in 1976, is the first widely publicized right-to-die case. Quinlan was a 21-year-old woman in a permanent vegetative state as a result of an accidental overdose of tranquilizers and alcohol. She was thought to require a respirator, but when it became clear that she would never recover, her father asked to have the respirator removed. The hospital went to court because they were uncertain about their legal liability and wanted immunity. The court upheld Mr. Quinlan’s request, and the respirator was removed. It turned out that Karen was not respirator dependent, and she lived another 10 years because her parents were not willing to stop artificial feeding (see Emanuel, 1998). 4 A plethora of research papers on caregivers’ burden during end-of-life care is indicative of the seriousness the issue commands in academic discourse. Growing complexity of diseases in the modern time, a gradual evolution of multiculturalism wherein the concept of ‘care’ has varied meanings among the caregivers, intergenerational conflict within the family related to care-giving task, and an overall attempt to formalize care-giving that was otherwise an innate benevolent human behavior has led to review caregivers’ perception and experiences. While a bulk of research work is devoted to documenting type of caregivers’ burden, few have developed different psychometric tools for assessing burden of care giving. A systemic review on existing psychometric tools till 2007 revealed that there were no less than 74 such assessment tools (Whalen and Buchholes, 2009). But of the total tools enumerated, only few are developed and tested in developing counties. The bulk is developed in the U.S., U.K., Japan, Netherlands and other developed nations. In another recent review, there were a total of 105 scales available to assess impact of informal care giving on the elderly (Van Durme, Macq, Jeanmart and Gobert, 2012). A very recent systematic review of the factors that influence stress of caregivers are: type of family intervention programs, ethnicity, caregivers’ attitude toward patients, kind of caregiver, caregivers’ occupation, patient’s response, caregivers’ ability to cope, cost implications and social network (Caqueo-Urízar et al., 2014). It is interesting that while developed countries are in a way to devise welfare policies for caregivers, developing countries are still generating evidences to appraise the volume of the problem. 5 Health Ministers from 11 South-East Asian countries adopted the Yogyakarta Declaration on Ageing and Health with a view to improving national responses to the health of aging populations in WHO’s South-East Asia Region and providing policy directions for future action. The Yogyakarta Declaration comes at an important juncture in history as 142 million people – 8 percent of the population of the region – are above the age of 60 years. By 2025, the estimated proportion of the population over 60 years will be twice that of 2000, and by 2050, it would have further increased to three times the proportion of 2000. The Ministers committed themselves to a coherent, comprehensive and integrated approach to promote healthy aging, develop and strengthen national policies, formulate multisectoral national alliances, ensure provision of sufficient resources for programs dealing with aging and health, taking into consideration the economic aspects of Long Term Care of the very old both at the facility and household levels, strengthen the primary health care system to address the health needs of the elderly population including the in-service training of health professionals and finally support the creation of dedicated cadres of health and social support caregivers within the existing health and social support systems.

18  Poverty of dying in India 6 In 2009, Downey, Curtis, Lafferty, Herting and Engelberg, (2010) constructed a model Quality of Death and Dying Questionnaire. This was done after discussions with close ones of total 205 deceased who died in different settings – community, hospice and clinic at three different periods of time, from 1997 till 2007. The researchers came up with a total of 31 items distributed over six domains, namely, Symptoms of Personal Care (6 items to denote physical conditions of those who were dying), Preparation of Death (10 items mainly pertaining to individual choice), Moment of death (3 items indicating the environment that prevailed during dying), Family (5 items, all of which describe presence of loved ones near the dying person), Treatment preference (3 items that relate to openness in doctor-patient relationship and promptness with which medical needs were fulfilled) and finally Whole person concerns (4 items that reflects personality of the dying person). The team after attempting to test their model in 2011 concluded that of the 31 items, 17 are prioritized more than others. Management of pain and other physiological symptoms, having distinct opinion over use of life-sustaining support, maintaining dignity and being in peace during death ranked high on the priority list of the people who died.

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Poverty of dying in India  19 Burkle, C. M., Mueller, P. S., Swetz, K. M., Hook, C. C., and Keegan, M. T. (2012). Physician perspectives and compliance with patient advance directives: the role external factors play on physician decision making. BMC Medical Ethics, 13(1), 31. Callahan, D. (1995). Setting Limits: Medical Goals in an Aging Society with “A Response to My Critics”. Georgetown: Georgetown University Press. Caqueo-Urízar, A., Miranda-Castillo, C., Giráldez, S., Maturana, S., Ramírez Pérez, M., and Mascayano Tapia, F. (2014). An updated review on burden on caregivers of schizophrenia patients. Psicothema, 26(2), 235–43. Centre of Excellence on Elder Abuse and Neglect. (2012). Fact Sheet. Retrieved from http://ltcombudsman.org/uploads/files/issues/Abuse_of_Residents_of_Long_Term_ Care_Facilities.pdf Chen, Z., Yu, J., Song, Y., and Chui, D. (2010). Aging Beijing: Challenges and strategies of health care for the elderly. Ageing Research Reviews, 9(Suppl 1): S2–5. Connolly, M. J., Broad, J. B., Boyd, M., Kerse, N., and Gott, M. (2014). Residential aged care: The de facto hospice for New Zealand’s older people.  Australasian Journal on Ageing, 33(2), 114–20. Constantini, M., Ottonelli, S., and Canavacci, L. (2011). The effectiveness of the Liverpool Care Pathway in improving end of life care for dying cancer patients in hopsitals: A cluster randomised trial. BMC Health Service Research, 11, 1–13. Cooper, L., and Aronowitz, P. (2012). DNR tattoos: A cautionary tale. Journal of General Internal Medicine, 27(10), 1383–1383. Davies, E., and Higginson, I. J. (Eds.) (2004). Better Palliative Care for Older People. Copenhagen, Denmark: World Health Organisation. Devlin, K. (2009, September 2). Sentenced to death on NHS. The Telegraph. Downey, L., Curtis, J., Lafferty, W., Herting, J., and Engelberg, R. (2010). The Quality of Dying and Death (QODD) questionnaire. Journal of Pain and Symptom Management, 39(1), 9. Economist Intelligence Unit. (2015). The 2015 Quality of Death Index: Ranking Palliative Care across the World. Singapore: The Lien Foundation. Ellis, M. (2013, December 16). Significant minority’ of Dutch public backs euthanasia for elderly. Medical News Today. Retrieved July  4, 2014, from www.medicalnewstoday. com/articles/270136.php Emanuel, L. L. (1998). Regulating How We Die: The Ethical, Medical, and Legal Issues Surrounding Physician-Assisted Suicide. Cambridge, MA: Harvard University Press. Enes, S., and Vries, K. D. (2004). A survey of ethical issues experienced by nurses caring for terminally ill elderly. Nursing Ethics, 11(2), 150–64. European Union. (2007). Special Eurobarometer 283: Health and long term care in the European Union. Retrieved from https://data.europa.eu/euodp/en/data/dataset/ S657_67_3_EBS283 Fernandez, E. (2011, November 29). Low staffing and poor quality of care at nation’s forprofit nursing homes. University of California San Francisco. Retrieved November 19, 2014, from www.ucsf.edu/news/2011/11/11037/low-staffing-and-poor-quality-care-nationsprofit-nursing-homes Freemantle, A., and Seymour, J. (2012). Why is the Liverpool care pathway used for some dying cancer patients and not others? Healthcare professionals’ perspectives. BMC Research Notes, 524(5), 1–9. Gallup Poll. (1996). Knowledge and Attitude Related to Hospice Care. Princeton, NJ: National Hospice Organisation.

20  Poverty of dying in India Higginson, I., and Sengupta, G. (2000). Place of care in advanced cancer: A qualitative systematic literature review of patient preferences. Journal of Palliative Medicine, 3(3), 287–300. Higgs, P., and Jones, I. R. (2009). Medical Sociology and Old Age: Towards a Sociology of Health in Later Life. New York: Routledge. High, D. (1993). Why are elderly people not using advance directives? Journal of Ageing and Health, 5(4), 497–515. Hockley, J., Watson, J., Oxenham, D., and Murray, S. (2010). The integrated implementation of two end-of-life care tools in nursing care homes in the U.K.: An in-depth evaluation. Palliative Medicine, 24(8), 828–38. Kafetz, K. (2002). What happens when elderly people die. Journal of Royal Society of Medicine, 95, 536–8. Kincannon, C. L., He, W., and West, L. A. (2005). Demography of aging in China and the United States and the economic well-being of their older populations. Journal of CrossCultural Gerontology, 20(3), 243–55. Kitzes, J., and Domer, T. (2003). Palliative care: An emerging issue for American Indians and Alaska Natives. Journal of Palliative Care and Pharmacotherapy, 17(3/4), 201–10. Khatutsky, G., Ormond, C., Wiener, J. M., Greene, A. M., Johnson, R., Jessup, E. A., Vreeland, E., Sengupta, M., Caffrey, C., and Harris Kojetin, L. (2016). Residential care communities and their residents in 2010: A national portrait. DHHS Publication No. 2016-1041. Hyattsville, MD: National Center for Health Statistics. Kluger, N., and Aldasouqi, S. (2013). A new purpose for tattoos: Medical alert tattoos. La Presse Médicale, 42(2), 134–7. Lawton, J. (2000). The Dying Process. London: Routledge. Legare, F. (2009). Decisions faced by patients: Primary care. In M. Kattanand M. Cowen (Eds.), Encyclopedia f Medical Decision Making (316–8) Thousand Oaks, CA: SAGE. Liebherz, S., Tlach, L., Härter, M., and Dirmaier, J. (2015). Information and decision-making needs among people with affective disorders – results of an online survey. Patient Preference and Adherence, 9, 627. Lunney, J., Lynn, J., Foley, D., Lipson, S., and Guralnik, J. (2003). Patterns of functional decline at the end of life. JAMA, 289(18), 2387–92. McCurry, J. (2008, June 19). Nearly 100 Japanese commit suicide each day. The Guardian. McMaster Health Forum. (2014). Improving Care and Support for People With Chronic Health Condition. Ontario: McMaster University. Marie Curie Cancer Care. (2013). Death and Dying in England: Understanding the Data. London: Marie Curie Cancer Care. Matsuda, S., and Yamamoto, M. (2001). Long Term Care insurance and integrated care for the aged in Japan. International Journal of Integrated Care, 1(1), 1–11. Matsuyama, K. (2012, August 30). In Japan, retirees go on working. Bloombergbusiness Week. Melvin, C., and Oldham, L. (2009). When to refer patients to palliative care: Triggers, traps, and timely referrals. Journal of Hospice and Palliative Nursing, 11(5), 291–301. Moore, M. (2013, January 16). China’s ageing population: 100-year waiting list for Beijing nursing home. The Telegraph. Retrieved July  1, 2013, from www.telegraph.co.U.K./ news/worldnews/asia/china/9805834/Chinas-ageing-population-100-year-waiting-listfor-Beijing-nursing-home.html

Poverty of dying in India 21 Murphy, D. (2011). The Liverpool Care Pathway provides clarity and focus: Communication, care and compassion come from you. Internation Journal of Palliative Nursing, 17, 529. The National Gold Standards Framework Centres. (2012). The gold standards framework. Retrieved January 29, 2014, from www.goldstandardsframework.org.U.K./home National Hospice and Palliative Care Organisation. (2013). NPCHO’s Fact and Figure: Hospice Care in America. Virginia: National Hospice and Palliative Care Organisation. Nippon.com. (2014, September 10). Suicide in Japan. Retrieved December 13, 2014, from www.nippon.com/en/features/h00075/ Nuland, N. (1994). How We Die. London: Chatto & Windus. Office of the Assistant Secretary for Planning and Evaluation. (2008). Advance Directives and Advance Care Planning: Report to Congress. Washington, DC: U.S. Dept. of Health & Human Services. O’Neil, M. (2012, August  17). Premature deaths linked to drugs in nursing homes. ABC News. Retrieved February  3, 2014, from www.abc.net.au/news/2012-08-17/ dementia-patients-dying-as-anti-psychotic-drugs-over-prescribed/4204536 Ottawa Health Research Institute. (2014). Patient Decision Aid. Ottawa: Ottawa Hospital Research Institute. Park-Lee, E., Caffrey, C., Sengupta, M., Moss, A., Rosenoff, E., and Harris-Kojetin, D. (2011). Residential Care Facilities: A Key Sector in the Spectrum of Long Term Care Providers in the United States. Retrieved from www.cdc.gov/nchs/data/databriefs/db78. pdf on 02.09.2015 Piers, R., Pautex, S., Curale, V., Pfisterer, M., Van Nes, M., Rexach, L., et al. (2010). Palliative care for the geriatric patient in Europe. Zeitschrift Fur Gerontologie Und Geriatrie, 43, 381–5. Silveria, M., and Forman, J. (2012). End of life care from the perspectives of the primary care providers. Journal of General Internal Medicine, 27(10), 1287–93. Smith, R. (2013, October  28). Am I  behind the times in expecting to die? BMJ. Retrieved May  1, 2014, from http://blogs.bmj.com/bmj/2013/10/28/ richard-smith-am-i-behind-the-times-in-expecting-to-die/ Stanford, P. (2012, October 29). Families left grieving and angry by the Liverpool Care Pathway. The Telegraph. Retrieved December 17, 2014, from www.telegraph.co.U.K./ health/9635842/Families-left-grieving-and-angry-by-the-Liverpool-Care-Pathway.html The Telegraph. (2013, July 15). A better path to care: Baroness Neuberger’s palliative care would put the needs of the patient first. United Nations. (2002). Report of the Second World Assembly on Ageing. Madrid: United Nations. Van Durme, T., Macq, J., Jeanmart, C., and Gobert, M. (2012). Tools for measuring the impact of informal caregiving of the elderly: A literature review. International Journal of Nursing Studies, 49(4), 490–504. Veatch, R. M. (1979). The National Commission on IRBs: An Evolutionary Approach. Garrison, New York: Hastings Center Report, 9, 22–28 Whalen, K., and Buchholz, S. (2009). The reliability, validity and feasibility of tools used to screen for caregiver burden: A systematic review. JBI Library of Systematic Reviews, 7(32), 1373–1430 Wissow, L., Belot, A., Kramer, W., Compton-Phillips, A., Kritzler, R., and Welner, J. P. (2004). Promoting advanced directives among elderly primary care patients. Journal of General Internal Medicine, 19(9), 944–51.

22  Poverty of dying in India The World Bank. (2016). Health expenditure, total (percent of GDP). Retrieved December 23, 2016, from http://data.worldbank.org/indicator/SH.XPD.TOTL.ZS World Bank Data. (2015). Death rate, crude (per 1,000 people). World Bank. Retrieved December 16, 2015, from data.worldbank.org/indicator/SP.DYN.CDRT.IN Wunderlich, G. S. and Kohler, O. (Eds.) (2001). Improving the Quality of Long Term Care: Committee on Improving Quality in Long Term Care, Institute of Medicine. Washington, DC: National Academy Press. Yuen, J. K., Reid, M. C., and Fetters, M. D. (2011). Hospital do-not-resuscitate orders: Why they have failed and how to fix them. Journal of General Internal Medicine, 26(7), 791–7.

2 Dying in the homeland

The global wave of population aging has hit the Indian shores also. In 2001, people above the age of 60 years constituted 7.7 percent of the total population, which grew to 8.14 percent in the next decadal census. Demographers show that 75.93 million of elderly people will soon increase to 133.32 millions in 2021 and around 323 million in 2050 (United Nations, 2002). What makes the demographic change difficult to tackle is the fact that the increase in life expectancy at birth (currently at 66.4 years and life expectancy at age 60 being 17 years) has not been accompanied by a corresponding improvement in healthy life expectancy, which continues to be 13.3  years at 60  years, which is low compared to other Asian countries like China (15.9  years), and Japan (21.1  years). The epidemiological shift accruing from large number of chronic diseases worsens the prolonged dying phase all the more. Chronic diseases contribute to a large portion of the burden of noncommunicable diseases among older adults. In WHO SAGE Wave 1 India survey, arthritis was found to be the most prevalent chronic disease among older respondents (18 percent) followed by hypertension (17 percent) both the diseases have a higher prevalence among older women than among older men. No other chronic disease studied (stroke, angina, diabetes mellitus, chronic lung disease, asthma, depression) had a prevalence exceeding 10 percent among older adults. Symptom-based prevalence of mental illness like depression was 19  percent among older respondents, and there was also a high unmet need for medication or treatment – 64 percent for depression. Multiple comorbidities were also higher in the older age cohort. Twenty-six percent of older respondents reported having a single chronic health condition in figures, while 16 percent had multiple morbidities (Arokiasamy, Parasuraman, Sekher and Lhungd, 2013). India accounts for 40  percent of the Years of Life Lost by communicable diseases (WHO, 2012). A  recent estimate shows that chronic lower respiratory diseases (CLRD) and chronic obstructive pulmonary diseases (COPDs) take the second and fifth highest position in terms of causing years of life loss (YLL). Incidentally, these are the two diseases that elderly persons commonly suffer from, in addition to musculoskeletal disorders that also claim a high number of years lost in disability (YLD).1 Among the top ten causes of death in age 70 years and over adults in 2010–2013, cardiovascular diseases accounted for 24.9 percent, respiratory diseases, 11.6 percent, and malignant and other neoplasms, only 3.8 percent (Sample Registration System, 2011).

24  Dying in the homeland While the trend toward chronic diseases is almost a global feature, what makes it especially challenging in India is the contradiction that accrues from having such diseases superimposed on a preexisting infectious disease scenario.2 This, coupled with the fact that the Indian government has perhaps one of the lowest public spending on health, complicates the situation. India spends 4.1  percent of its GDP on health care as per 2012 information (The World Bank, 2016). According to the World Health Statistics 2013, public expenditure on health is very low, constituting 28.2 percent of total health expenditure, while according to the Government of India’s 12th Five Year Plan, public health expenditure in India was only 1.04  percent of GDP in 2011–2012 as compared to the global average of 5.4 percent. Additionally, there are pressures to align public policies with internationally set agendas like the Millennium Development Goals, which marginalize many sectors and problematize many intersectoral linkages that need optimum time, resources, political will and public awareness to operationalize. This possibly explains why an aging population has not merited serious attention from the government. There is perhaps also an assumption that despite the staggering statistics, the demographic transition would take time to complete in India; by 2020, we would be still one of the younger nations with a large population in the working-age group. However true this may be, government preparedness for the challenge needs to be in place because the larger social, political and economic scenario in which these demographic transitions are taking place in India are vastly different from the Western countries. Underdevelopment and poverty are likely to exacerbate in ways hardly discernible to the planners. Elderly, without social and economic security, poor or negligible insurance cover and without adequate palliative provision, are likely to die poorly unless major reconfiguration of health care policy takes place to accommodate end-of-life care needs of the elderly. But so far, even basic end-of-life environment has not commanded much attention from the planners, making it remotely possible that improvements in quality of end-of-life care and quality of death and dying for the elderly would emerge as important concerns. For some critical observers, reconfiguration to accommodate the needs of the elderly may not pose to be a serious task at this juncture, although further delay would make reforms much more costly in future. A Lancet study holds that India can still make good progress given the fact that its economic growth trajectory in the past few years, has been much more rapid than that in any other country, except China. The health care costs, although increasing, are still sufficiently low so as to allow major reforms at affordable cost. This combines with the fact that it still has a considerable young population (about 650  million people are younger than 30  years) compared to countries that are caught in the demographic shift (Reddy et al., 2011).3 A recent report published by IRIS Knowledge Foundation in collaboration with UN-Habitat reveals that by 2020 India is set to become the world’s youngest country with 64 percent of its population in the working-age group. Paradoxically, the ‘young and productive’ India has rising old-age dependency ratio, which stood at 122 in 1991 and increased to 131 in 2001, and further to 142 in 2011 (Census of India, 2011). The dependency figures are alarming in the context of decline of workforce

Dying in the homeland  25 participation of elderly since 1983 – from 42.2 percent in 1983 to 38.8 percent in 2004–2005 (Selvaraj, Karan and Madheswaran, 2011), and further down to 37.2 percent in 2009–2010 as per the different rounds of NSSO (Reddy, 2016). Some states of India, such as Uttar Pradesh, Bihar, Odhisa, Assam, Rajasthan, Uttaranchal and West Bengal, show relatively high levels of reverse dependency also (Prasad, 2011). Many elderly (around 90 percent of men and 65 percent of women) have family members depending on them. On an average, an economically independent rural elderly person (around 33 percent) supports four persons, while an urban elderly (36 percent) supports three persons (Ministry of Statistics and Program Implementation, 2011). With such dismal figures of age-specific vulnerability, it is difficult to share the optimism of the Lancet team. The overall unmet need for health care of the elderly is 33.1 percent as per the 2001 census (Rajan and Aliyar, 2008). Moreover, a study in Uttar Pradesh and Maharashtra finds that people above the age of 70  years have limited access to health care facilities than the younger cohorts. Among the elderly population, women are still more marginalized as reflected in comparatively less access to hospitals than men – 87 versus 67 per 1,000 aged persons (Rajan and Sreerupa, 2008). All this prompts a series of questions as assessment measures: Is the government making honest attempts at keeping the risk factors, environmental and behavioral, for chronic diseases and functional decline at a low level? Are the protective factors identified and maintained at high levels? And when functional decline inevitably takes place at old age, what are the measures undertaken for improving the quality of dying? What are the ‘windows of opportunity’ for improving quality of end-of-life care and quality of death and dying given the fact that health of the elderly and in general the state of health of the populace is on the decline? This last statement is difficult to empirically substantiate due to lack of a serious health audit, although it is subjectively experienced by most Indians. As Reddy, president of the Public Health Foundation of India, puts it, it would be difficult to reap the ‘demographic dividend’ on account of a predominantly young population if we do not check the noncommunicable diseases (NCDs) that can impact the economy in multiple ways. In a study on economic losses due to NCDs, the Harvard School of Public Health (Bloom et al., 2014) estimated that the economic burden of these ailments for India will be $4.5 trillion for the period 2012–30 (in 2010 dollars), a figure that is equivalent to nearly nine times the total health expenditure of $710 billion during the previous 19 years. Given such staggering figures, the most important challenge would be to revitalize our decaying public health system and, more specifically, the primary health care system for tackling end-of-life concerns. Reforms in public health have constituted the single most important component in the entire end-of-life care planning in advanced countries. This unfortunately invites little attention from the Indian government, which continues to uncritically promote a medicalized, technological death. Moreover, while the West has moved from the first phase of public health interventions centered on providing sanitation and potable water and eradicating infectious diseases, the Indian government is still struggling with these sticky issues. To be fair, death-centric issues do create

26  Dying in the homeland great ambivalence and avoidance among populations clamoring for basic essentials in life. Ironically, to spare resources, wasteful expenditures in invasive treatments in end-of-life care need to be rationalized and death and dying brought to the center of health planning. Good end-of-life care requires an explicit collaborative working arrangement with primary care, and this issue figured importantly in the Yogyakarta Declaration (2012), which aimed, among other measures, to strengthen the primary health care system. Any attempt to locate EoLC within a Public Health framework thus needs to address and initiate issues of competency at this level. However, the implementation of this approach has been poor, and currently health facilities at the grass-root level mainly provide services for communicable diseases and reproductive health that have well-defined population, mode of treatment and expected outcomes. There is a gross inadequacy at this level to identify population in terminal phase and their needs and capacity to access services. Constrained by serious financial and human resource crisis, primary health services lack means of coordinating referrals and communicating with higher tier of health care for Long Term Care, pain and symptom management (Rao and Mant, 2012; Reddy et al., 2011). In fact, they are not equipped to cover a broad spectrum of issues centering around end-of-life care, death and bereavement. In many Western countries, public health strategies – whether life- or death- centric or integrative in nature as in the latest Health Promoting Palliative Care – have been supported by strong and efficient data collection and surveillance system. But in India, state-sponsored, large-scale surveys on elder preferences, disability needs and assessment, pain and symptom relief, quality of death and dying and carers’ need assessment remain elusive. In other words, there is a serious information deficit on the epidemiology of the dying trajectories of persons who are chronically ill and growing old (cf. Singer and Bowman, 2002). At the primary health level, death recording is affected by noncompliance of medical personnel with the Cause of Death reporting system. Presently, the available Civil Registration System and Medical Certification of Cause of Death suffer from several limitations of underreporting narrow coverage in rural areas and poor compliance with standards of reporting, coding and classifying causes of death. Mahapatra and Rao’s (2001) appraisal of death-recording system identifies capacity-deficit of the recorders to identify death during firsthand information collection. The authors show how many of the deaths occurring from cancer are recorded as ‘senility’ due to poor diagnosis. Then, there are problems in the system of categorizing death itself. Different cases of stomach and lung cancer are reported under a single category of digestive ailments because of similarity in symptoms. Such lacunae in death-recording patterns compromise practical community initiatives for the dying elderly. Attempts to sophisticate tools to assess specific causes of death across different age groups at household level through large-scale projects like the ‘RGI Million Death Study in India’ (RGI-CGHR, 2005) also fail to contribute significantly due to lack of facilities for regular updating of data. Such uncertainty can, to a certain extent, be overcome through integration of death surveys with the existing periodic national level surveys like the Census, National Family Health

Dying in the homeland 27 Survey and District Level Household and Facility Survey.4 It may be mentioned that over 75 percent of the annual estimated 9.5 million deaths in India occur at home, and a large majority of such deaths do not have a certified cause. India urgently needs reliable quantification of the causes of such deaths. There is also a need for better epidemiological evidence about the relevance of measurements: physical (such as blood pressure and obesity), behavioral (such as smoking, alcohol, HIV-1 risk taking, and immunization history), and biological (such as blood lipids and gene polymorphisms) for understanding the genesis of disease and disease rates in populations (Jha et al., 2005). Needless to say, such ‘information deficit’ is both the cause as well as the outcome of a poorly functioning primary health system that seems to work oblivious of the demographic and epidemiological transition taking place in the country. As an illustration, there is a serious lack of information on people who live on the streets – the destitute who age and die under very dismal conditions. The Census of 2011 enumerated 1772,889 of homeless population who reside on pavements, temple courtyards and makeshift huts of whom 834,541 live in villages and 938,348 live in cities and towns. However, the actual number of homeless people far exceeds the enumerated figure – a phenomenon attributed to ‘census silence.’ This has a deep implication on the lives of these people, many of whom are migrants, refugees or abandoned by the families due to advancing age, sickness or poverty. It is estimated that around 8 million people on the streets sleep with hunger, tolerate the harsh cold on winter nights, bear road injuries and infections. They live with fear of eviction and accidents (Planning Commission, 2012). Health care service is dismally allocated and irregular (National Advisor on Homeless, 2011). Many depend on unreliable private facilities and charity-based services. Clearly, more data is needed to understand the experience of aging and dying of such destitute who spend a life course of deprivation and neglect. Due to information paucity, problems of end-of-life care, emergence, aggravation and management of chronic symptoms at the grass-root level remain underdeveloped, thereby limiting capacity of the health system to provide service continuity all through the human life course, particularly at the end of it. While some government responses are forthcoming under Active Ageing framework,5 they remain centered on improving quality of elder living to the exclusion of their experience of dying – a lacunae that has already been noticed, acknowledged and rectified in health reforms in advanced countries. However, India’s ability to learn from Western blunders has been rather limited. The existing health care models in India do not appear to be compatible with the new epidemiological challenge involving elderly people. These remain extremely clinical and disease-specific rather than patient-centric, a fact accentuated by the poor integration of medical specialties like geriatrics, which claim a more holistic approach toward senile physiology. As early as 2005, the National Knowledge Commission had suggested introducing geriatrics in medical education along with other subjects like family medicine, sports medicine, trauma care, etc. (National Knowledge Commission, 2005). However, over time the integrative and holistic potential of the discipline seems to have been lost

28  Dying in the homeland with the result that many elderly in India are dying in hospitals. The recently concluded 71st round of National Sample Survey (NSS) of 2014–15 shows that hospitalization of people aged 60  years and above, within the time period of 365 days prior to their death, is 31.98 percent, 36.74 percent and 31.28 percent for young-old, older-old and oldest-old group (above 80  years), respectively. A comparison with the 60th round NSS data conducted in 2004–05 shows that the trend of hospitalization prior to dying has increased for all the age groups, and particularly for the young-old ones. Around 49  percent of the rural people access hospitals in comparison to 51.6 percent of the urban residents. Surprisingly, over a decade of time, urban access has escalated from 38.2 percent, whereas the rural access has diminished from 61 percent. Rural poverty might be a possible explanation for this fall since accompanying a dying patient to a hospital results in wage loss, especially where hospitals are located far off as is the case generally. Although hospitalization is more prominent in urban areas, barring few highly plush five-star settings, most public-sector hospitals are too overloaded and financially strapped to deliver the promise of good care. This is confirmed by the fact that there were only 70,000 ICU beds available across all hospitals and small-time nursing homes in India to cater to 5 million patients requiring admissions every year (National Accounts Statistics, 2001). Although the situation seems to have improved at present, still ICUs are not free from severe limitations; an internal audit of the All India Institute of Medical Sciences, a premiere public institute in India, shows a range of problems from shortage of space to lack of fund flow (Chatterjee, 2013). Moreover, lack of objective criteria in planning treatment and assessing patients’ responses render hospitals unlikely places of support for the elderly, especially for cancer patients (Joshi, Ishi, Noronha and Prabhash, 2013). Overall, considerable deficit of information also prevails on the quality of care for the elderly patients in the hospitals. In a study by Kuruvila and Dhanasekaran (2015) that attempted to explore variability of satisfaction among a small sample of 120 hospitalized elderly in various departments of a public teaching hospital in Kerala, it was found that around 44 percent of the elderly patients were hospitalized for 11–15 days, and 16 percent said that the duration was only 5–10 days. A sizeable portion of 40  percent were hospitalized for more than 16 days. A  large percentage of the elderly respondents were dissatisfied with the service-related issues like addressing the needs (49.6 percent), privacy during physical examination (44.2  percent), time spent in seeking consultation with the doctor (44.2  percent), orientation at the time of admission (42.5 percent), information to family (41.7 percent) and explanation on the reason of test (39.2 percent). Regarding difficulties faced with hospital amenities, 93 percent of elderly were dissatisfied with the nonavailability of drinking water and hot water, no special consideration of their age (75 percent), not knowing whom to contact (74 percent), lack of information on different services available within the hospitals (61 percent) and outside (52  percent) and incomplete prescriptions (23  percent) (Kuruvila and Dhanasekara, 2015). Another survey in a tertiary hospital of North India shows that more than 57 percent of the elderly from peri-urban areas and 42 percent

Dying in the homeland  29 of rural elderly patients expressed their dissatisfaction with the quality of the service (Singh, Gupta, Manar, Shuklaand Chaturvedi, 2014). What makes such surveys confirmatory in nature is the general observation that Indian hospitals are poorly managed. A  study by Kaur, Pawar, Kohli and Mishra (2008) in a 13-bedded hospital revealed a colossal figure of machine errors (nearly 29 percent of the total observed events), as well as human errors (as much as 70 percent) occurring during treatment. Human errors resulted in extubation, blocked endotracheal tubes and falls from bed and improper ventilation to name a few. The study infers that many times human errors are the result of unfamiliarity and lack of awareness of ICU protocols to deal with critically ill persons, particularly during their sedation. Hospital Aquired Infections in India are also fairly common, and the elderly are obviouly the most susceptible group; one out of every four patients admitted to ICU contracts sepsis, and every second person dies of it (Indian Society of Critical Care Medicine, 2011). The poor hospitalization outcome for the elderly is alarming given the fact that the economic burden of illness for the elderly is substantial. In India, out-ofpocket (OOP) health care expenditure is one of the highest among the world; it constituted 4.8 percent of household consumption and 10.7 percent of household nonfood expenditure in the 55th round of NSSO survey during the period of 1999– 2000 (Garg and Karan, 2009), which escalated to 12.2 percent and 21.7 percent respectively in the 60th round of NSSO during the period of 2004–05 (Ladusingh and Pandey, 2013b). Hospitalization contributes to major part of the aggregate health care expenses of the elderly (UNFPA, 2011). On an average, the cost of hospitalization in government hospitals is Rs. 6,120, whereas the cost of hospitalization in private hospitals is Rs. 25,850 – much higher in comparison. A major chunk is spent on medicines, hospitalization charges and diagnostics costs. Medicines continue to account for the major share in hospitalization expenses in both private and government hospitals. It is surprising to note that even in government hospitals, inpatients have to spend a considerable amount on medicines. UNFPA (2011) notes that elderly men and women from rural areas are more dependent on government health centers and hospitals. More elderly either with lower levels of education or from lower wealth quintiles receives treatment from government health facilities. As the level of education and wealth quintiles increase, the elderly tend to seek treatment from private providers (UNFPA, 2012). Outpatient treatment is equally costly. A survey conducted by UNFPA (2012) revealed the high cost of treatment of elderly both in hospitals and other medical care settings. The study found that approximately Rs. 1,000 was spent for each episode of outpatient care. The out-of-pocket expenditure for hospitalization was also very high. It was about Rs. 11,177 per episode; private hospital expenses were nearly double that of public hospitals. The expenditure was almost entirely borne by the family. Both awareness of and access to health insurance schemes are almost negligible. For instance, only 14  percent of the total 8,960 elderly who were surveyed in one study were found to be aware about the Rashtriya Swasthya BimaYojana, a government-sponsored health insurance scheme, and only 7 percent of the elderly from families below the poverty line were registered to access it.

30  Dying in the homeland The poor availability of health insurance schemes unquestionably creates immense pressure on the elderly and their families. An analysis of the 66th round of NSS data showed that expenses for health care in families where at least one elderly member reside, is four times more than the families that have no elderly member (Mohanty, Chauhan, Majumder and Srivastava, 2014). This fact corroborates Rajan’s (2006) statement based on the NSS 1995–96 data that lack of comprehensive health care insurance for the elderly poses an immense problem particularly for the poor elderly. He argues that since most of India’s elderly are economically dependent on their children and grandchildren – more than 65 percent of the elderly (as per the NSSO 2004–5), they are inclined to dismiss and underreport many of the ailments until these become too acute to manage. Further, Rajan points out that only 32.8 percent of the elderly are able to spend above Rs. 3,000 for hospitalization. Of the 68 percent who were unable to afford costly hospitalization, 25.42 percent could barely spend Rs. 500, thereby raising doubts and speculation about the quality of services received by them. A gender difference is also noticeable among the group whose total hospitalization costs exceed Rs. 5,000, although the gap is negligible for those who could spend the least (below Rs. 500). Moreover, multiple morbidities in old age demand hospitalization for a longer time. According to FICCI (2014), increased prevalence of diseases that require a Long Term Care results in a higher health care spending by elderly compared to overall population both in terms of absolute expenditure on health care as well as percentage of total consumption expenditure. The largest part of the total out-of-pocket expenditure is borne by terminally ill or dying patients in India. A study conducted by Ladusingh and Pandey (2013a) using the 60th round of NSS data shows that cost of inpatient care for decedents is much higher than the same for the survivors, particularly for patients who were hospitalized for long in private setups However, Rajan (based on 55th round of NSS) shows that institutionalized care and medical services decrease with age: nearly 21.4 percent of the elderly in the age group of 60–69 years died in different types of hospitals as against 8.26 percent of the elderly aged above 80 years. Similarly, 38.94 percent of the elderly above 80 years died without any medical assistance whereas 24.3  percent of the people within the age of 60–69 died in a similar situation. High cost of dying might have been the reason for many to discard hospitalization during dying. The pattern of rising health care cost for the elderly until 2020, which is predicted to grow at a compound annual growth rate of 21.9 percent, is quite unsettling, creating a greater compulsion to opt out from hospital care during end stage. The scenario becomes complex given the fact that hospitals in India have not been reengineered to accommodate prolonged dying trajectories; none use age as a specific criteria in devising scientific protocols for initiating and withdrawing technologies. Strategies for eliciting patient value-histories and Advance Directives are not commonly practiced and use of Advance Directives is not yet legalized in medical practice. Only recently, Psychiatric Advance Directives (PADs) have been incorporated into India’s Mental Health Care Bill, 2013, and stands to receive legal sanction (Ratnam, Rudra, Chatterjee and Das, 2015). It provides

Dying in the homeland  31 the patient with right to decide treatment and nominate a proxy decision maker. A study on the use of PAD in a private health facility in Tamil Nadu has proved to be efficacious (Shields, Pathare, van Zelst, Dijjkamp and Narasimhan, 2013), whereas absence of all such strategies have resulted in fuzzy admission, treatment and discharge procedures that complicate dying. Once hospitalized, most elderly find themselves entangled in tubes and machines that suck up their frugal resources and that of the family and the state as well. Some prefer and manage to drop out of the treatment regime. A study covering 11 states of the country shows that most elderly withdraw from treatment citing unbearable cost of treatment (55.1  percent) followed by many who underscore their ailments (24.5  percent) (UNFPA, 2011). While out-of-pocket expenditures render death frightful, public sensitivity to wasteful utilization of scarce hospital resources on frail elderly remains low. This is evident from lack of measures to mitigate the problem of bed-blocking by devising Care Pathways of the sort mentioned in the previous chapter or by establishing a continuum with home care through ancillary support networks and Long Term Care facilities for the dying elderly. Dying elderly in India have not yet benefitted from palliative care, which forms the backbone of end-of-life care strategies in Western countries. A global estimate shows that South East Asian Region (of which India forms a part) and African Region (AFRO) are in highest need of palliative care services and aged people above the age of 60 years constitute the greatest chunk of possible recipient of these services (Worldwide Palliative Care Alliance, 2014). Unfortunately, India is categorized among 3B countries with generalized palliative care, sharing low position with countries like Angola, Bermuda, Bangladesh and Ethiopia (Lynch, Clarke and Connor, 2011).6 The country has failed to evolve a close working relationship of palliative care with public health services. As a result, palliative structures that could have provided the much-needed thrust for interlinking and intersectoral approaches seem not to have furthered the goal of EoLC as a public health agenda. Still in its infancy, there are 138 Palliative Centers spread over 16 states and union territories (cf. Khosla, Patel and Sharman, 2012). According to the census of 2011, Himachal Pradesh, Andhra Pradesh, Punjab, Odhisha and West Bengal are few of the states where percentage of elderly population exceeds the national average of 8.0 percent.7 Yet these states have few palliative centers. Himachal Pradesh has no Palliative center, Andhra Pradesh has three and Punjab, Odhisha and West Bengal have one each. The services are mostly focused on urban population. Kerala, with 83 palliative units, nine hospices and a huge network of community-owned palliative programs in both rural and urban areas, is the only state that has done well (Pallium India, n.d.). In other states, distribution of palliative services is not in parity with concentration of elderly population. Government support to palliative medicine in terms of advocacy, organizational strategies, statutory-funding policies and linkage with the ongoing National Health Mission is not adequate. Evidence of this is found in poor workforce development, poor narcotic regulations and insufficient space in medical curricula to accommodate the fledgling palliative medicine. Only recently, in 2017, the Proposal of Strategies for Palliative Care in India, developed under the guidance of the Ministry of Health and Family Welfare

32  Dying in the homeland in 2013, has been taken in the National Health Plan. But funding issues remain largely unclear. The 12th Five Year Plan has asked for 10 percent of the planned outlay for cancer care to be earmarked for palliative care in its National Plan for the Prevention and Control of Non-Communicable diseases. There are also efforts to amend the Narcotic Drugs and Psychotropic Substances (NDPS) Act of India so that the entire country has a uniform system pertaining to availability of essential opioid medicines. However, while palliative medicine’s clinical focus, professional dominance and an overtly cancer-oriented stance have invited serious criticism in the West, these remain the distinctive features of its development and growth in India. Palliative care seems to have deviated from its core philosophy to ensure holistic care for one who is dying by ensuring multisector collaboration on day-to-day basis; it has rather become an unplanned project, uncoordinated in approach and has succumbed to financial crisis and local pressures. Its borrowed concern with cancer precludes a large number of elderly in the older-old group (the aging of the aged phenomenon that comprise 11.35 percent of the elderly by 1991 census), who are subject to a higher incidence of morbidity and disability and require long-term health care. According to the Census 2011, 27.18 percent of the elderly are suffering from one form of disability or the other. Around 64 per 1,000 elderly in rural and 55 per 1,000 in urban suffer from disability. Locomotor disability is most common, as 3 percent of the elderly suffer from it (Ministry of Statistics and Program Implementation, 2011). Mental retardation is 0.36 percent, and mental illness 0.45 percent among people aged above 60 years. Epidemiological studies carried out in urban and rural Lucknow in north India with the support of Indian Council of Medical Research (ICMR) revealed that 17.3 percent of urban and 23.6 percent rural people aged 60 years and above suffer from mental health problems. The average prevalence of mental health problems in older adults in both rural and urban communities is 20.5  percent. Translating the prevalence data over the current population, it is estimated that 17,100,000 crore people above 60 years suffer from psychiatric disorders (Tiwari and Pandey, 2012). The most frequently encountered disorders were dementia and mood disorders, particularly depression. Other mental illnesses include anxiety disorders, drug and alcohol abuse, delirium and psychosis (Tiwari et al., 2013; Singh, Kumar and Reddy, 2012; Nagraj et al., 2011). To complicate issues, the country has very few hospitals with geriatric units; geriatric outpatient services are available only at tertiary care centers in cities. Moreover, mental illnesses are not covered under health care insurance schemes. As per WHO (2005), India has just 0.2 psychiatrists, 0.05 psychiatric nurses, 0.03 psychologists per 100,000 people and 0.26 beds (0.2 beds in mental health hospital and 0.05 beds in general hospital) for mental health patients per a population of 10,000. A significant percentage of dementia patients die at home and lack of specialized palliative involvement to improve family empowerment remains the biggest problem. In 2010, it was estimated that 3.7  million people aged over 60  years had dementia (2.1 million women and 1.5 million men). Among demented persons, 88 percent who have severe dementia need care. Unfortunately, out of a sample of 75 demented persons in urban centers, 4 percent were found to live alone, while in

Dying in the homeland  33 rural areas 15.1 percent out of a sample of 106 resided alone (Shaji et al., 2010), thereby showing the unmet need for care. Poor state partnership with private palliative initiatives is reflected in the few hospices that subsist mostly on foreign charities and funding. At present, there are few large hospices in India – Karunashraya (in Bangalore), Shanti Avedna (with branches in Bombay, Delhi and Goa), Ganga Prem in Uttarkashi, Jeevodaya in Chennai and smaller ones dotted in different places. However, most are funded by international charities indicating the poor end-of-life care policies of the state that fails to appreciate the need for greater dialogue and partnership in dying matters. Even the ones in Uttarkashi and Vrindavan that have overtly spiritual leanings are funded by international organizations and mostly cater to dying cancer patients – a priority agenda in the West rather than in India. Interestingly, many smaller charitable organizations caring for dying people refrain from calling their organizations as hospices, preferring to be identified as palliative centers instead, so severe and intense is the stigma of death in our country. This is clear from the fact that even the Missionaries of Charity, which has otherwise offered yeoman services to the sick and the dying destitute in Kolkata, refrains from using the term hospice since those who are dying may wish to continue living. Some do, in fact, go back to the streets after healing, although sooner or later they succumb to death from poverty and illness. One NGO in Chennai admitted having to carefully omit reference to the term hospice so as not to be evicted from the rented premises. Dying when old takes place amidst unresolved policy issues concerning the role of the state in institutional dying. The debate is reflected in the paradoxical position taken by the National Policy for Older Persons (1999), which considers institutionalization as a last resort though it aims at identifying single and homeless elderly. There is emergent need for setting up institutional support for the elderly (Rani, Palani and Sathiyasekaran, 2012; Tripathy, 2014). Some of the major reasons are lack of money, absence of family support, economic burden on children, neglect and abuse and inability for self-care (Dubey, Bhasin, Gupta and Sharma, 2011; Kumar, Das and Rautela, 2012; Panigrahi and Syamala, 2012; Thakkar, Shah and Bala, 2013; Yadav, 2014). Research shows that existing old age homes suffer from serious constraints, such as lack of care provision for the oldest-old; inability to cater to the needs of inmates with special illness like Alzheimer, Parkinson’s and stroke; paucity of skilled staff to deal with geriatric problems; refusal of admission to abandoned old; lack of authentic information about the duration of care and most importantly, absence of any monitoring body to check the quality of care provided by the management (Chakraborty, 2004). Most of the inmates suffer from multiple physical morbidities like visual problems, respiratory diseases, endocrine disorders and insomnia along with mental diseases, such as depressive disorders and dementias (Kumar et al., 2012; Panigrahi and Syamala, 2012; Rani et al., 2012). However, they do not receive regular treatment and have to be referred to public hospitals (Rani et al., 2012). Paradoxically, physical and psychological well-being (freedom from diseases or infections and ability for self-care) are considered as important prerequisites during admission to old age homes. When in need of acute care, families are asked to take them

34  Dying in the homeland away (Das and Shah, 2004). Though family support helps elderly in maintaining a positive attitude toward old age and better social relationships (Dubey et al., 2011), most residents staying in free serviced old-age homes often lack this support (Rani, 2012; Yadav, 2014). Considering the poor state of institutional care, it appears that deinstitutionalization may be a better option for the elderly. However, it may be mentioned that while deinstitutionalizing measures have worked effectively in the West, Indian demographics can hardly sustain this amidst large-scale poverty, unemployment and unhygienic living conditions of many home dwellers. A deinstitutionalized approach especially marginalizes those elderly who are living and dying alone. In 2011, UNFPA in a sample survey of 9,852 men and women above the age of 60 years from seven states found that large number of elderly from rural and urban areas stay alone – 5.9 percent and 6.5 percent respectively. The most alarming feature is the fact that 5.5  percent of people above the age of 80 years stay alone. Women constitute a large majority – 9.6 percent (Jadhav, Sathyanarayana, Kuma and Janmes, 2013). Migration – whether forced or voluntary – also creates a situation of disadvantaged dying. Even out-migration of younger members of the family impacts the dying experience of the elderly who are left behind. A visit to a village in Madhya Pradesh conveyed an initial impression of shock and disbelief on finding only old and handicapped people, a few women with nursing babies and no able-bodied men around to take care of them. Such contexts provide compelling evidence for improved institutional support for the elderly and a greater involvement of the state in welfare concerns related to dying of the socially marginalized groups. Lack of institutional support has particularity affected a large number of women. In the wake of increased feminization of the elderly, hordes of Hindu widows breathe their last, uncared for and neglected. Many die in places like Benaras and Vrindavan, and their care issues have clearly not been adequately addressed in health planning. According to one estimate, there are more than 20,000 widows, mostly elderly and impoverished, who live begging on the streets of Benaras (United Nations, 2001). More gendered responses to death and dying are perhaps needed. Homes in India are the most common sites of dying for the elderly, whether by choice or by compulsion. Although not substantiated by data (since none exits), more elderly in rural areas die in home settings since such localities remain underserved by hospitals or even primary care centers. Unfortunately, rural homes lack basic amenities to provide a caring environment for the dying. Nonintegration of homes in a continuum of care with very little assistance from state governments to support the dying or the caregivers renders them fragmented in nature. In the absence of home health aides, home carers and social workers and doctors to make post-hospitalization home visits, considerable difficulty is faced by the elderly, particularly those who are living and dying alone. Dying at home in cities is no less tedious given the unplanned chaotic urban landscape that is far from age-friendly. Many cities in India witness spurt in basic amenities but a deteriorating ‘social capital’ in Kellehear’s sense of a compassionate social network to aid the aged and the dying. State social welfare policies providing financial, medical and social support do not adequately connect to the needs of family caregivers

Dying in the homeland  35 who nurse old, dying patients and struggle to meet the expenses of medicines and episodic hospitalization (cf. Dror, Putten-Rademaker and Koren, 2008). Finally, the government’s response to the cultural tradition of natural dying has been rather lukewarm. There are few government-supported environments to facilitate the spiritual and indigenous medical practices of its culturally plural society. It is not known how far the dominant Hindu spiritual practices of conscious dying, or even willful negation of the body through yogic ascetic practices or the Jain tradition of fasting unto death could be articulated with biomedically oriented end-of-life care strategies. There are equally poor government responses to restructure and rehabilitate existing dying spaces in traditional gerontopolis like Benaras and Vrindavan and render them more conducive to present cultural needs of the dying elderly. Indeed, the current rhetoric of medicalized death has deprived most Indian elderly of a level of death preparedness, which has been a characteristic feature of the Indic culture long acclaimed for its death-accepting and -affirming stance compared to the death-negating countries dominated by the Judaic Christian tradition. In recent years, however, Western perspectives have undergone a drastic change with death emerging as an important public discourse. In fact, its openness in medical and nursing discourse as reflected in strategies for death preparation in terms of advance directives and funeral preparation, etc., testify to a shift that has taken place from the time when historians like Gorer (1965) and Aries (1981, 1974) characterized death as a taboo in the West. By contrast, very few elderly in modern India are able to affirm the presence of death in their lives. This could be either due to difficulty of translating complex Hindu philosophical concepts of body and death in actual life, or to the very erosion of these culture traits or to the fact that the death-preparation skills have not been honed and practiced in life with the result that the only option left is to fall back on biomedical help, which any way has limited relevance in addressing our finitude.

Notes 1 Interestingly, YLDs due to cancer and HIV/AIDS are low across all the age-groups, especially for the elderly. This contradicts Indian government’s present focus on palliative interventions for cancer and HIV/AIDS (Institute of Health Metrics, 2013). 2 Most of the infectious diseases in India are of zoonotic origin rising out from the confluence of low environmental concern and rising population, compounded by large number of people living in an impoverished condition and affected by infectious diseases (Dikid, Jain, Sharma, Kumar and Narain, 2013). India bears a substantial portion of global burden of leprosy (56 percent), lymphatic filariasis (40 percent) and tuberculosis (21 percent) (Planning Commission, 2012). Besides, diarrhea, hepatitis E, Japanese encephalitis are few of the infectious diseases that are widely prevalent in India. 3 Interestingly, while Asia’s share of elderly people is likely to increase to 64 percent from the present 53 percent by 2050, in Europe the population will shrink to 11 percent from the present 24 percent in the same lapse of time. Of the total 70 million people who are aged above 80 years, 33 million reside in less developed regions. 4 Data on morbidity is finally adopted in the fourth round of DLHS survey. The Indian Institute of Population Studies, Mumbai, has also initiated a project, Longitudinal Ageing Study in India (LASI) since 2010. The study endeavors to generate

36  Dying in the homeland information related to health and living situation of the older adults in India. It aims to cover 29 states and 2 UTs. The pilot phase has so far come up with interesting insights into living condition of aged, type of assistance they require and other health related problems. Another notable initiative is the Study on Global Ageing and Adult Health (SAGE), 2007  – a collaborative project involving IIPS and WHO. SAGE is part of global longitudinal study implemented in six countries  – China, India, Ghana, Mexico, Russia and South Africa. In India, the study is being conducted in six states – Assam, Karnataka, Maharashtra, Rajasthan, Uttar Pradesh and West Bengal – covering a sample of 10,600 households. SAGE aims to gather evidence based on socioeconomic background, health status, burden of disease, health care utilization and quality of life and well-being. Besides self-reported information based on interviews, SAGE adopts improved health measurement techniques by using a range of biomarkers – blood pressure, lung function, vision, grip strength, time walk, a battery of cognitive tests and anthropometry and blood test for anemia, diabetes, heart disease and hepatitis B. 5   WHO defines Active Ageing as a ‘process of optimizing opportunities for health, participation and security in order to enhance quality of life as people age’ (2002). In other words, the framework encourages people to realize their potential for physical, social and mental well-being throughout the life course, encourages participation in the society and optimizes opportunities for adequate protection, security and care. This framework fails to address the needs of those elderly who are sick and suffering from disabilities of various kinds. 6 The Worldwide Palliative Care Alliance in 2011 made an attempt to map the progress in palliative care in 234 countries. In summary, there are presently 136 countries that have palliative care services. The report ranks countries in one of the six categories: countries with no known hospice-palliative care activities as Group 1; countries where some sort of capacity building is going on and the service is yet to start as Group 2; countries where services are patchy, affected by irregularity of fund and morphine as Group 3a; countries where hospices and palliative care are initiated with local and regional support, multiple source of funding and morphine procurement policies, but still unintegrated with health care system as Group 3b; countries at the infancy of integration with national mainstream provision as Group 4a and finally, countries that are at advanced form of integration as Group 4b. 7 The figures for different states are as follows: Himachal Pradesh (10.4 percent), Andhra Pradesh (8.0  percent), Punjab (9.5  percent), Odhisha (9.3  percent) and West Bengal (8.2 percent).

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38  Dying in the homeland www.mohfw.nic.in/WriteReadData/l892s/Suo%20motu%20disclosure%20of%20official%20tour%20of%20MoS(SB).pdf Ministry of Health and Family Welfare. (2012). Proposal for Strategies for Palliative Care in India. New Delhi: Government of India. Ministry of Statistics and Program Implementation. (2011). Situation of the Elderly in India. New Delhi: Government of India. Mohanty, S., Chauhan, R., Majumder, S., and Srivastava, A. (2014). Out-of-pocket expenditure on health care among elderly and non-elderly households in India. Social Indicators Research, 115(3), 1137–57. National Advisor on Homeless. (2011). Report on Urban Homeless. New Delhi: Commissioners of the Supreme Court. National Knowledge Commission. (2005). Report of the Working Group on Medical Education. New Delhi: Govt. of India. Pallium India. (n.d.). Directory of palliative care services. Retrieved June 5, 2014, from http://palliumindia.org/resources/clinics/ Panigrahi, A. K., and Syamala, T. S. (2012). Living arrangement preferences and health of the institutionalised elderly in Odisha. Working Paper, Institute of Social and Economic Change, 1–21. Planning Commission. (2012). Report of the Expert Group to Recommend for the Detailed Methodology for Identification of Families Living Below Poverty Line in Urban Areas. New Delhi: Government of India. Prasad, S. (2011). Deprivation and vulnerability among elderly in India. Working Paper, 2011–13. Rajan, S. I. (2006). Population Ageing and Health in India. Mumbai, India: Centre for Enquiry into Health and Allied Themes. Rajan, S. I., and Aliyar, S. (2008). Population ageing in India. In S. I. Rajan, C. Risseeuw and M. Perera (Eds.), Institutional Provisions and Care for the Aged: Perspectives From Asia and Europe (pp. 39–54). New Delhi: Anthem Press. Rajan, S. I., and Sreerupa. (2008). Disease, disability and healthcare utilization among the aged. In S. I. Rajan, C. Risseeuw and M. Perera (Eds.), Institutional Provisions and Care for the Aged: Perspectives from Asia and Europe (pp. 39–54). New Delhi: Anthem Press. Rani, M. A., Palani, G., and Sathiyasekaran, B. W. C. (2012). Morbidity profile of elders in old age homes in Chennai. National Journal of Community Medicine, 3(3), 458–64. Rao, M., and Mant, D. (2012). Strengthening primary healthcare in India: White paper on opportunities for partnership. BMJ, 344, e3151. Ratnam, A., Rudra, A., Chatterjee, K., and Das, R. C. (2015). Psychiatric advance directives in India: What will the future hold? Asian Journal of Psychiatry, 16, 36–40. Reddy, A. (2016). Labour force participation of elderly in India: Patterns and determinants. International Journal of Social Economics. Reddy, K. S., Patel, V., Jha, P., Paul, V. K., Kumar, A. S., Dandona, L., and Lancet India Group for Universal Healthcare. (2011). Towards achievement of universal health care in India by 2020: A call to action. The Lancet, 377 (9767), 760–8. RGI-Centre for Global Health Research. (2005). Prospective Study of One Million Deaths in India:Rationale, Design and Validation Results. Toronto: University of Toronto. Sample registration system. (2011). Census of India. Retrieved December 21, 2015, from www.censusindia.gov.in/2011-common/Sample_Registration_System.html Selvaraj, S., Karan, A., and Madheswaran, S. (2011). Elderly Workforce Participation, Wage Differentials, and Contribution to Household Income (Working Paper 4). New Delhi, India: UNFPA.

Dying in the homeland  39 Shaji, K. S., Jotheeswaran, A. T., Girish, N., Bharath, S., Dias, A., Pattabiraman, M., and Varghese, M. (2010). The Dementia India Report: Prevalence, Impact, Costs and Services for Dementia. New Delhi: Alzheimer’s and Related Disorders Society of India (ARDSI). Shields, L., Pathare, S., Zelst, D. van, Dijjkamp, S., and Narasimhan, L. (2013). Unpacking the psychiatric advance directive in low-resource settings: An exploratory qualitative study in Tamil Nadu, India. International Journal of Mental Health System, 7(29), 1–10. Singer, P., and Bowman, K. (2002). Quality end-of-life care: A global perspective. BMC Palliative Care, 1(4), 1–10. Singh, A. P., Kumar, K. L., and Reddy, C. P. K. (2012). Psychiatric morbidity in geriatric population in old age homes and community: A comparative study. Indian Journal of Psychological Medicine, 34(1), 39. Singh, S., Gupta, A., Manar, M., Shukla, P., and Chaturvedi, R. (2014). Quality of services in a tertiary care hospital of Northern India: Geriatric patient perspective. International Journal of Interdisciplinary and Multidisciplinary Studies, 5(1), 234–41. Thakkar, J. G., Shah, U. P., and Bala, D. V. (2013). Health profile of elderly residing at old age homes of Ahmedabad. Journal of the Indian Academy of Geriatrics, 9, 78–81. Tiwari, S., and Pandey, N. (2012). Status and requirements of geriatric mental health services in India: An evidence-based commentary. Indian Journal of Psychiatry, 54(1), 8–14. Tiwari, S. C., Srivastava, G., Tripathi, R. K., Pandey, N. M., Agarwal, G. G., Pandey, S., and Tiwari, S. (2013). Prevalence of psychiatric morbidity amongst the community dwelling rural older adults in northern India. The Indian Journal of Medical Research, 138(4), 504. Tripathy, P. (2014). Elderly: Care and crisis in old age home. International Journal of Multidisciplinary Research in Social & Management Sciences, 2(2), 86–90. UNFPA. (2011). Report on the Status of Elderly in Select States of India. New Delhi: UNFPA. UNFPA. (2012). Report on Status of Elderly in Select States of India. New Delhi: United Nations Population Fund. United Nations. (2001). Women 2000. Widowhood: Invisible Women Secluded or Excluded. New York: United Nations Division for the Advancement of Women. Dept. of Economic and Social Affairs. United Nations. (2002). World Population Aging: 1950–2050. New York: Population Division, DESA, United Nations. World Health Organisation. (2002). Active Ageing: A Policy Framework. Geneva: WHO. World Health Organisation. (2005). Mental Health Atlas. World Health Organisation, Geneva. www.who.int/mental_health/evidence/atlas/global_results.pdf Worldwide Palliative Care Alliance. (2014). Global Atlas of Palliative Care at the End of Life. Geneva: WHO. Yadav, L. (2014). A sociological study of old persons residing in an old age home of Delhi, India. International Research Journal of Social Sciences, 3(4), 21–3.

3 Are Indian hospitals good places for the dying elderly?

In answering this question, the case of Moni Dadu may serve as an illustration. Grand Pa, or Moni Dadu as he was lovingly called, was admitted to one of the super-specialty hospitals in Kolkata when he was almost 87 years of age. Moni Dadu was diagnosed with cancer of the spinal cord. For two years following the diagnosis, he kept visiting his doctor on an outpatient basis in a hospital as and when his pain interfered with his life, not allowing him to sleep, sit upright for long or stand on his feet. Finally, when it became unbearable, the doctor saw no other option but to admit an unwilling patient to the ICU in a super-specialty care setting and later to a private cabin within the same hospital. Moni Dadu, who never missed any of the family weddings, parties or get-togethers no matter how grand or common they be, spent the last days of his life confined to this room within the plush ambience of the hospital. The room was a small one; it could only accommodate one chair – that meant one visitor at a time. Outside his room there was small board that announced, ‘Silence Please.’ For the next 40 days, he knew little about his son and his two lovely granddaughters who were struggling relentlessly to arrange for their visa to meet their ailing grandfather. Dadu was not even aware of how his old and feeble wife kept moving from one department of the hospital to another, anxiously arranging for ICU admissions, medications and payments. It was surprising how a homemaker confined to her homebound duties for almost four decades, and perhaps more, could successfully handle hospitalization procedures with none to assist her. From time to time, Moni Dadu came out of his sedated condition and pleaded to be taken back home to his own bed that remained warm with the slanting rays of the setting sun. Grandma, or Dida, was, however, not eager to allow so for two reasons: 1) her NRI son, who kept paying for his father’s medical expenses for all this while, wanted to continue the treatment, and 2) she had no one to care for her husband at home, being old and feeble herself. For her, the hospital at least had attending doctors and nurses. Notwithstanding the tireless effort of his wife to keep Dadu alive, his daughterin-law’s continuous vigil over him from the U.S. through telephonic contacts with the doctors or his son’s efforts to expedite the visa, Dadu breathed his last in their absence. He had no one to talk to. None could hear what the poor man wished to say during his final departure.

Indian hospitals and the dying elderly  41 Moni Dadu’s case draws attention to two important points. First, he did not want to die in a hospital, and second, contrary to his wish, his wife did not want him to be at home, preferring the hospital instead, due probably to lack of care provisions at home. But suppose Moni Dadu had access to alternate care structures situated at an intermediate point between the acute care hospitals and the home that would have served his needs. Alternately, if there were trained care providers at home, that might have given relief to Dida, provided the home environment was capable of sustaining such care, both physically and emotionally in terms of its likely impact on other family carers. For the time being, both these options are unavailable to majority of the Indians. Like Moni Dadu, they die a lonely death and in places they don’t want to be.

What the West might have offered to Moni Dadu Different care settings within a continuum Many Western countries have a range of care settings for people like Moni Dadu who suffer from chronic debilitating diseases like COPD, renal failure, liver disorder, advanced congestive heart failure and cancers of various types before they finally die. There are Long Term Care settings – nursing homes, care homes, assisted-living facilities, foster and day care homes, palliative centers, hospices and hospice services at home. Though still fragmented, governments are trying to work out a continuum of health care services, and most have developed endof-life care policies and programs for seniors with the growing realization that the type of medical care that elderly patients receive at the end of life has to be different. It needs be supportive rather than invasive in nature and focused on symptom management control rather than aimed at extending life. An inability to acknowledge such differences often lead to disproportionate and unstandardized care – either overcare or undercare. In recent years, a growing appreciation of the specific medical care needs of the elderly have led to development of separate set of quality indicators/measures for those most likely to die or become severely disabled in the next two years, indicated by several factors like advanced age, functional decline, disability and self-rated poor health. In 2000, health researchers in America developed Assessing Care of Vulnerable Elderly (ACOVE) indicators that reflect the most comprehensive examination ever conducted of the quality of medical care provided to vulnerable older Americans.1 EoLC within primary care Central to end-of-life care strategy has been an attempt to strengthen the role of primary care teams, which play an important role in identifying and diagnosing dying patients. Accurate and timely diagnosis of dying, a core clinical skill in all care settings, has important implications in addressing the holistic needs of the dying patients as well as the family. Primary care teams, especially in the U.K., play a particularly important role in assessing needs for hospitalization and

42  Indian hospitals and the dying elderly palliation by using different prognostic tools. While disease-specific prognostic tools may not be sensitive enough for older people, criteria based on clinical feature of different advanced illnesses prove to be more helpful. Still better approaches figure in some countries like Scotland, where the Scottish Government Action Plan advocates a person-centered approach based neither on diagnosis or prognosis, but on the needs of patients and carers in all care settings (Boyd and Murray, 2010). The information of primary care providers and GPs in Scotland can be wide ranging, from type of living arrangement of the patient to their profile on allergic reactions to any particular drug, their clinical history, type of assistance available at home and even their care plan (Scotland N.H.S, 2008)2Such detailed information facilitates appropriate medical decision in end-of-life care. Silveria and Forman (2012) provide strong and compelling reasons for including Primary Care Providers (PCPs) in the delivery of end-of-life care services. First, PCPs, owing to their continued and intense association with their patients, seem to know the person as a whole in comparison to specialists who may have profound knowledge on medicine but know less about their clients. Second, since the rapport is quite intense and at times informal, PCPs and their support staff often provide much of the nonmedical services for patients even at odd-hour emergencies. This includes answering their queries and at times referring patients to various respite centers and hospices and so on. Third, for obvious reasons, since the PCPs are easily accessible by the patients, there is a flexibility of visiting time and trustworthy relationship between doctor and patients. New care pathways Besides strengthening primary care teams, changes in acute care settings have been worked out, such as a care pathway in the U.K. – the Liverpool Care Pathway (LCP). This pathway, which starts with the identification of people approaching end-of-life, deserves special discussion for the insight it has to offer despite serious controversies resulting in its final withdrawal. Best understood not as a different set of treatment regime for the dying patient but essentially as a framework of care in the last few hours before death, it does not replace clinical treatment but ushers in more care in hospitals where it is conspicuously missing. The pathway rests on responsibility both personal as well as professional to put effective systems in place during dying. Chaos and confusion both for service providers and patients and families, pain and suffering, exorbitant cost and unnecessary hospital triage during the end-of-life is reduced with caregivers acting responsibly by shifting a terminal patient to a Care Pathway. LCP is thus accepted as one of the important pillars of EoLC in the U.K. because of its ability to regulate redundant hospital admissions and manage dying process of individuals by adhering to minimum standard of care by laying concern on proper nutrition, hydration, pain relief and symptom management. It caters to individual needs  – physical, psychological, social, spiritual, religious and cultural – across three phases: ‘initial assessment’, ‘ongoing care and treatment’ and ‘care after death.’ It has strategies of communicating decisions amongst clinicians and service recipients in the most

Indian hospitals and the dying elderly  43 conducive way possible through multidisciplinary teams (usually comprising of palliative care specialists, palliative/district nurses, an integrated care pathway manager, representatives from pastoral care team, a pharmacist and member of a hospital ward) who assess every medical measure about the patient in concern, sometimes as frequently as every four hours (Mackenzie, 2010). In fact, the continuous evolving of medical care using a multidisciplinary team on a case-by-case basis gives LCP a unique touch. During its phase of ‘ongoing care,’ a commendable practice is to keep all arrangements ready (ventilation, medication, sedatives), yet none is used against the wishes of the patient. Every decision is assessed on the ground of its beneficence for the dying patient and the family. Any change in care practice is clearly communicated to the patient (or to the family), and any disagreement between the patient and the medical team is resolved through advice from an independent third party. However, the external solicitation procedure does not stop communication with the patient/family. In fact, it goes on to support the family even after the demise of the patient. Pain and symptom management are important in LCP. Medication for symptom management is given when required and in compatible doses, but never dismissed as trivial signs of normal aging. They are regarded as crucial signs of approaching death that merit special care and attention. This identification is an important part of initial assessment in LCP. A very robust model of care practice is also evident in Artificial Nutrition and Hydration (ANH) for dying patients that is neither considered a routine task for LCP caregivers nor precludes measures for patients who need assistance. In fact, food and water are offered to patients only if they desire and if it is in their best interest. LCP understands the social and emotional power of food and, hence, respects the deep conviction of the dying patients when they willfully forsake it during their last few days of living. However, basic components of care, including symptom management, are not compromised even if ANH services are withheld or withdrawn. As Ashby and Stoffell (1995) show, for dying patients, keeping their mouth moist and applying lip balm on their dry, parched lips is more important than mere feeding them. Finally, the strength of LCP lies in putting simple but meaningful questions to the dying, such as, ‘Do you wish to contact any person during your last hours?’ and ‘Do you have any wish and spiritual requirement to be fulfilled?’ Data from the U.K. and other international sources suggest that LCP has been enormously helpful in enhancing the confidence level of nurses and other caregivers (Ellershaw and Ward, 2003;Ellershaw, Smith, Overill, Walker and Alridge, 2001). A significant reason for heightened confidence is the ability to address the burden of pain and suffering of the dying person. To understand how LCP exactly works, a case may be presented from New Zealand – one of the countries where LCP is widely practiced. The case concerns that of Isla Coddington, a 77-yearold woman suffering from metastatic cancer in her breast (Best Practice Journal, 2011). Bound to a residential care home, over a period of time Isla grew anorexic and nauseous. Her oncologist indicated to her family that given her deteriorating symptoms she would live for six more weeks. Her daughter then asked the residential care facility to put her mother on LCP. With instructions from the doctor,

44  Indian hospitals and the dying elderly the nurse in charge administered cyclizime (50 mg at subcutaneous level every 8 hours) for nausea. Additionally, a 2.5 mg dose of morphine was prescribed every 4 hours as pain relief. The nurse was clearly instructed to monitor the pain and increase the dosage if required. Over and above medications for dealing with respiratory infection, those for anxiety reduction were also given to Isla. As a result, although the cancerous growth was unhindered, her family reported that for the next two days her pain was considerably alleviated and she was able to talk to her family. On the third day, however, her family said she felt mild pain. The residential care facility then increased her morphine dosage. Also, assessments showed that the dying Isla was growing a bit restless owing to dehydration. The doctor instructed subcutaneous infusion of saline to keep Isla hydrated. On the fourth day, Isla finally died. What Isla’s family still appreciated was her ability to talk to her family till her death. Nor did she feel much pain. Her departure was rather peaceful. The above case illustrates the importance of some sort of agreed-upon definitions: transparency, shared decision-making and medical decisions in accord with patient and family wishes – central features offered, at least theoretically by the Liverpool Care Pathway. Unfortunately, since predicting death clinically remains still uncertain, decisions to withhold life-sustaining services leave many to speculate that LCP is actually ‘dangerous and fearful’ and that it hastens death. Such allegations are not scarce to find. One such allegation is made by Prof. Pattric Pullicino, a consultant neurologist in East Kent Hospitals University Foundation Trust, that LCP results in a ‘terrific abuse.’ Doctors, though uncertain of death, withhold services much early, thereby hastening death. In the case of one of his patients of 71 years, treatment was withheld, and he was put on LCP without even notifying him or the family. While the family’s persuasion to restart the medication was seriously turned down by the hospital authority, Prof. Pullicino’s request had to be conceded and the patient actually recovered. Such incidents have led critics to equate LCP with back-door euthanasia. Of the odd 130,000 patients put on LCP pathways every year, almost half of them are not informed about the shift in their treatment plans. Prof. Ahmedzai from University of Sheffield considers this as ‘unforgivable’ during end-of-life. Then, there are other allegations that consent forms are rarely used in putting a patient on pathway, and that around 60,000 people died every year in LCP in the U.K. with no trace of their consent forms (Groves, Martin and Doughty, 2012). To make matters worse, since the patients did not have a corporate insurance cover, no public inquiry was made into the misuse of the system. It was alleged to be a massive cover-up! Notwithstanding the criticism that LCP hastens death of patients by overdosage of sedatives and refusing food and water, it has proved to be robust among many other pathways (Ellershaw, 2007). A recent review by Mayland, Williams, Addington-Hall, Cox and Ellershaw (2013) has explored the wide-ranging care provisions possible under the LCP framework. The abuse of the system, otherwise theoretically promising, is unfortunate. As actually conceived, LCP does not support an irreversible shift in care in anticipation of dying if there are improvements in the person’s level of consciousness, functional ability, oral intake, mobility or ability to self-care by patient, relative or carer, or if a team member expresses

Indian hospitals and the dying elderly  45 concerns regarding the plan of care. A full team reassessment is required to ascertain if the plan of care needs to change direction. Some treatments are continued, some are suitably modified and some are terminated. And while there is a general belief that LCP prescribes deep sedation, in reality it recommends a thorough review of all medications prescribed for the patient should they be necessary. The second round of national audit of the efficacy of the Liverpool Care Pathway3 in 2008 looked specifically at prescribing of sedatives at the end of life but found no evidence of excessively prescribing benzodiazepines or antipsychotics in most hospitals. Even in their last 24 hours, 65 percent of patients needed no continuous subcutaneous infusion of drugs to control distress like agitation or restlessness; 31 percent had low doses of drugs to relieve symptoms delivered by subcutaneous infusion and only the remaining 4  percent needed higher doses (Gambles, Stirzaker, Jack and Ellershaw, 2011). Perhaps, like many other well-intentioned strategies, the LCP collapsed because of implementation problems and unrealistic expectations of the caregivers. In fact, an independent review of the Liverpool Care Pathway constituted by the Ministry of Care and Support, U.K. (2013) traces the major flaw to the very use of the word pathway leading people to believe that it is a treatment regime that has a major outcome at the end of it. Death as an outcome is less appreciated by people. However, the review team did acknowledge that better communication could have been more robustly integrated with the LCP. It agreed to phase LCP out by July, 2014. Meanwhile, the Leadership Alliance for the Care of Dying People, a coalition of 21 national organizations that was set up to lead and provide a focus for improving care of people who are dying and their families, pleaded for ‘One Chance to Get it Right’ (2014) and proposed a future road map to prioritize and ensure that decisions are made and actions are taken in accordance with the person’s needs and wishes, and that these are regularly reviewed and decisions revised accordingly. This document has independently reviewed the Liverpool Care Pathway for the Dying Patient. Its priority areas include clear identification of people’s needs during dying, sensitive communication between staff and patients and customization of care to suit individual choices. It also has a strong mandate to include family while making decisions about treatment. Despite the many limitations, the idea of a pathway does offer hope for countries like India that have neither suitable legal provisions for assisted dying nor compassionate care settings for the elderly. Specific features of the system  – clear prognostication, continuous watch with the help of a multidisciplinary team, avoidance of unnecessary life-extension – are worth nurturing to optimize resources as well as to minimize pain and suffering. How we avoid the pitfalls of the system and align it with Indian conditions and needs would remain a challenge in our quest for improving the dying experience. Improved end-of-life decision-making A major thrust in improving end-of-life care in Western countries has been on defining death in such a way that life-saving treatments are not unnecessarily prolonged for patients who have either lost the interest or the capacity to feel

46  Indian hospitals and the dying elderly and experience life. Cutting down aggressive treatment has involved certain new parameters, guidelines and improved clarity for defining death to facilitate withholding and withdrawal of aggressive treatments (Monteverde and Rid, 2012). In the U.S., the proportion of patients dying with a decision to limit life support increased from 51 percent to 90 percent over the 5-year period from 1988 to 1992. Presently, in the U.S. and in Europe, withholding or withdrawal precede death in up to 90 percent of dying patients in critical care units and 10 percent of admissions. Rates of foregoing of life sustaining treatments (FLST) among dying patients in other parts of the world are as follows: Brazil (11 percent – 36 percent), Lebanon (46 percent), Hong Kong (59 percent), China (54 percent withholding, 34 percent withdrawal), South Africa (87 percent) and Israel (91 percent). In the U.S., as many as 60 percent of deaths from strokes, heart failure and traumatic brain injury has some form of treatment withdrawal. According to a multicenter prospective observational study in Europe, decisions for limitation were related to age and diagnosis among other factors. Age, poor prognosis and poor quality of life were among the reasons cited in studies from France and Canada. In the latter series, the mean age of patients undergoing withdrawal of support was 65 +/− 14.6, most of whom had severe or extreme dysfunction of at least one organ system (see Mani et al., 2012). The gap between withdrawal and withholding decision is rather universal. Generally, decisions to withhold treatment have outnumbered decisions to withdraw treatment. A Norwegian research paper that retrospectively studied cases involving treatment limiting decisions from 2007 to 2009 found that out of total 301 patients admitted to ICU, 2 percent had made the decision for withdrawal of lifesustaining therapies and 21  percent for withholding (Hoel, Skjaker, Haagensen and Stavem, 2014). In North America, 26  percent of doctors seem to be more disturbed if they had to enact withdrawal decisions than withholding treatment (The Society of Critical Care Medicine Ethics Committee, 1992). In Europe, more physicians willed to withhold treatment than to withdraw (Vincent, 1999). Perhaps a chance of recovery, however faint that may be in the event of withholding of treatments, make physicians choose this option. In support of this argument, a European study found that following withdrawal, 99  percent of people died, whereas 11 percent of people got well during withholding of treatment (Sprung et al., 2003). It is, however, important to note that most physicians in the Western countries differentiate between withholding and withdrawing techniques and, thus, caution against using the two terms synonymously (Solomon et al., 1993). However, modern debates including those addressed by Indian practitioners consider this distinction rather fuzzy and not relevant.

The fragmented Indian landscape Returning to our core query: Are hospitals in India good settings for dying elderly? The first thing that strikes any observer is the fragmented landscape of health delivery in which hospitals are located. Acute care centers have remained disjointed from the primary health care system and receive heavy influx both for outpatient and inpatient admissions, thereby stretching their capacity for

Indian hospitals and the dying elderly  47 compassionate care. Presently, India has a huge deficit of 600,000 physicians (Deo, 2013). In comparison to the WHO standard of 4 physicians for every 1,000 patients, India has only 1 doctor to serve 1000 patients – a fact reported by IMS Health commissioned Physician and Chemist survey in 2013 (cf. India Today, 2013). This survey covered 120 Indian cities and over 300,000 doctors. Another doctoral thesis that covered two nodal centers for cancer treatment in the state of Odisha in 2000–2001, found that the doctor-patient ratio was 1:547 and 1:3,314 respectively (Mohanty, 2004). An internal report of the All India Institute of Medical Sciences (AIIMs) shows that there is a critical shortage of human resource and infrastructure in all its ICUs. Lack of space virtually creates congestion (Chatterjee, 2013). More alarmingly, in New Delhi, 41 percent of the private practitioners do not have requisite qualifications in medicine or para-medicine. Yet they relentlessly administer IV fluids and intravenous injections; many of the choices are irrational and dangerous too. Das and Hammer (2007) find that it is the poor quality of care rather than access that shoots up cost for city-based treatments. According to World Bank report (2001), 40 percent of the people admitted to hospitals have to borrow money and 25  percent even go below the poverty level in the process. In recent decades, most Indian cities and towns in India have also witnessed a mushrooming of private nursing homes. However, most of the private nursing homes/hospitals are small establishments. As for example, in the capital city, out of 700 nursing homes registered with the Nursing Home Cells of the Delhi Government, 85 percent have less than 30 beds. Similarly, Mahapatra (2003), in his observation of private hospitals in Andhra Pradesh, found that most of them fall short of standards specified by Bureau of Indian Standards, particularly in terms of bed space. Fifty percent of the large hospitals in Andhra Pradesh and 19 percent of the nursing homes have no written protocols for therapy. It is evident that these small nursing homes, unlike their Western counterparts, are not settings for Long Term Care; rather, they mimic the hospitals in their structure and organization of health delivery. Their ratings depend not on how good the care is, but on how technologically well-equipped the center is for diagnosis and therapeutics. Both inpatient and outpatient referrals to these hospitals and nursing homes are chaotic, erratic and nonlocalized because of poor link with primary care centers and the dwindling role of GPs in heath delivery. This is illustrated in the case of Mr. B. (75 years) who came all the way from a small town of Kolkata with his son and wife in a hired ambulance in the scorching heat of the mid-summer month. The elderly man was suffering from chronic lung disease and was panting heavily by the time he reached the doctor. Dr. X, after carefully examining the patient, declared that his lungs had been irreversibly damaged. But the patient was blissfully unaware of his deteriorating health and was prepared to start medications and initiate fresh diagnostic investigations. As the doctor examined the reports, the young boy narrated his father’s sad plight, which began in 2009 when he developed shortness of breath. He was treated by a local physician who could give temporary relief. The family that survives on the young boy’s meager earnings planned to come to the city and consult with Dr. X. Unfortunately, they ended up with a wrong doctor with a different specialization but holding the same name.

48  Indian hospitals and the dying elderly However, the doctor continued treatment at a plush hospital for nearly a year or more. The bills kept inflating with minimal relief till they took discharge and got admitted to a public hospital. The attending doctor finally helped them to get in touch with the right person. However, by then money had been drained and the patient’s condition had worsened a lot more. Mr. B’s case is not an isolated one. Patient case records do not travel from primary to the tertiary level, despite a well-intentioned, three-tier health care system. There are also not many medical graduates interested in pursuing Family Medicine. In a recent survey of medical interns in South India, almost 73 percent wished to pursue some sort of specialization and only 10 percent planned to join primary health care as general practitioners (Seetharaman and Logaraj, 2012). Moreover, since geriatric care is still in its infancy in many states of India, hospitals also fare poorly in prognostication for elderly patients. While in the Western countries standard prognostication tools are being developed, hospitals in India rarely have a system of improving the accuracy of formulated prognosis.4 Inappropriate and aggressive treatment of the elderly results in considerable wastage of medical resources, thereby shooting up health care costs prior to dying. It may be mentioned here that (The) National Program for the Health Care for the Elderly (NPHCE), designed and supported by the Ministry of Health and Family Welfare, is an attempt by the government to optimize health care resources for the elderly populace. In its ‘architecture of healthy and active ageing’ the program not only intends to bring large number of elderly within the gamut of health services but also intends to optimize health care resources by strengthening primary and secondary health care facilities to provide preventive, promotional and rehabilitative services, and thereby reserve the tertiary level only for curative treatment. But much depends on how judiciously the geriatric problems are screened at the primary and secondary level before they are referred to the next higher level. At present, such screening is rarely done, the result of which public hospitals experience heavy influx of elderly patients. At times, doctors and administrators find it difficult to dissuade patients from hospitalization, and many succumb to aggressive demands of the family or the patient themselves.

Inappropriate treatment There is evidence from India that a substantial amount of medical inventories for patients who are old and frail are redundant (Nayar, 2005). According to Butola (2014), lack of orientation towards palliative care, poor communication skills, a disease-focused curative approach and the unending battle against death all lead to unrealistic hope among patients and their families. Inappropriate referrals and treatment at the end of life are common and result in a lot of avoidable suffering for both the patients and their families. According to World Health Organisation’s World Medicine Situation, on an average, doctors in developing countries spend less than 60 seconds in prescribing medicines and explaining the regimen to patients (Lu, Hernandez, Abegunde, WHO and Edejer, 2011). Only half the patients receive any advice on how to take their medicine, and about one third

Indian hospitals and the dying elderly  49 of them don’t know how to take the medicine immediately on leaving the facility. In overcrowded hospitals in India, this issue assumes serious importance particularly for the elderly with multiple morbidities. Overtreatment arising due to polypharmacy and potentially inappropriate medications among elderly patients are so severe that it invariably leads to iatrogenic disorders like hemorrhage, secondary infections, weight loss and falls. Sometimes drug reactions adversely mimic symptoms of other diseases like dementia. Usually polypharmacy stems from multiple consultations with several specialist doctors. In fact, preponderance of single-organ specialists for multiple diseases among the elderly goes without restraint in India. Interestingly, a study conducted among 150 patients, all aged above 65  years, at the outpatient department of a teaching and general hospital in one of the districts of Karnataka reveals that inappropriateness of medical prescription is highest for patients in the age group of 65–74 years followed by patients in the age category of 75–84 years and still lesser for patients who are aged above 85 years (Praveen, Biradar, Hafiz, Kamaand Neelkanta, 2012). This data might be indicative of lack of physician skills for geriatric care compounded by poor and often accentuated symptom reporting by anxious aging patients. This is triggered by the current ethos of equating old age with treatable disabilities and impairments. Shah, Gajjar and Desai (2012) in their study conducted in a rural hospital of Kamsad with over 400 elderly patients conclude that patients were on an average prescribed five to seven drugs! This is true even for aged psychiatric patients, many of whom suffer from dependency anxiety (Patel and Prince, 2001). There is a general paucity of data to understand the extent of polypharmacy among them, particularly among the elderly demented patients. A  small study with only 144 patients shows that almost 60 patients were consuming medicines that could potentially exacerbate cognitive decline. Moreover, patients consumed on an average more than 8 drugs which could even step up to 11 at times (Dhikav, Sethi, Singhal and Anand, 2014). Aggravating this problem is the case with which drugs can be procured over the counter by all, including the elderly. With no other alternative structures to address their problems, both real and imaginary, the elderly, accompanied by family members taking leave from regular work, anxiously flock to the outpatient hospital wards. Inpatient hospital procedures are still fuzzier, characterized mostly by emergency admissions. Compared to an earlier generation, many elderly and their family members have now a greater knowledge of hospital life-saving procedures and some, in fact, look forward to dying in hospitals. Many consider themselves lucky to be able to avail existing life-extending services – medications, technologies and specialized nursing – as a reassurance that they are well looked after till the end. Interestingly, a trend till a few years back was to make obituary announcements in newspapers, carefully mentioning the place of death, especially if it happened to be a plush city hospital or a nursing home! In other words, these announcements served as public affirmation of the fact that the deceased were well looked after. Unfortunately, what is overlooked is the high degree of clinical uncertainty in prognostication. Given the fact that physician prognostication is an underdeveloped aspect of clinical medicine, and physicians worldwide have difficulty in

50  Indian hospitals and the dying elderly predicting death of their patients, the situation gets worse in India, where proper prognostication tools are unavailable to many doctors. An underdeveloped state of geriatric medicine complicates the situation further and invariably prolongs the dying process. This, coupled with the absence of alternative care settings, confines the dying person to hospitals for a longer time, possibly till death.5 In pursuance of a more confirmatory diagnosis, the rate of interhospital transits (emergency care in hallways, elevators and corridors) has increased, which also pose a greater risk for elderly patients in the form of Unexpected Events (UEs), which are shockingly high in Indian hospitals. In a very recent prospective study among 254 patients admitted in a tertiary hospital of India, 64 patients experienced a total of 139 UEs. The average age for the patients was 56 years, thereby indicating the risks involved for elderly patients. UEs ranged from minor accidents like oxygen probe (observed in 38 patients) or ECG lead displacement (27 patients) to some major mishaps like fall in SpO2 (observed in 15 patients), BP variation (recorded in 22 patients), altered mental status (for 5 patients) and arrhythmias (in 6 cases) (Venkatagowda, Rao, Mutkule and Taggu, 2014). UEs are largely attributed to failure of coordinated planning and synchronicity among professional caregivers (cf. Shirley and Bion, 2004; Beckmann, Gillies, Berenholtz, Wu and Pronovost, 2004). There is, indeed, a need for large-scale hospital assessment surveys to bring much-needed improvement (Sampath, 2014). Additionally, hospital procedures often make extensive use of ICUs even for very frail elderly, which in turn predispose them to attending risks of sepsis and other iatrogenic disorders. This is all the more pathetic for aged patients who live alone and after episodic visits to hospitals return home with Hospital Acquired Infections, which are very common in India. According to the Indian Society of Critical Care Medicine, only 1 in every 10 ICUs observes practices that are vital to keep it infection free (The Times of India, 2012). Most common bacteria found in ICUs are Acineto bacterbaumannii, Escherichia coli, Klebsiellapneumoniae, Pseudomonas aeruginosa, Staphylococcus aureus and Streptococcus pyogenes, causing urinary tract infection, wounds, pneumonia and bronchitis (Patwardhan, Dhakephalkar, Niphadkar and Chopade, 2008). Nasa, Juneja, Singh, Dang and Arora (2012) showed that ICU admissions cause infection in respiratory and urinary tract, abdomen, skin and soft tissues and even affect nervous and cardiovascular system. This may even render patients bedridden. Multiple intubations to patients in ICU increase manifold chance of infection accentuating the helplessness of patients. Malnutrition among ICU patients is also quite high. In a study conducted in a hospital among 500 patients, it was found that 197 patients suffered from moderately to severe malnutrition. The average age of these patients was above 60 years, which indicates that the best of medical logistics misses out comprehensive nutritional plan for the patients (Chakravarty, Hazarika, Goswami and Ramasubban, 2013). Additionally, not much research is available on the extent of use of mechanical ventilators on elderly patients. There is also sparse information for drawing comment on clinical procedures in effecting ventilator use, its withdrawal and pronouncement of death in India. In some countries, proaxiographic approaches within interdisciplinary science and technology studies have shown

Indian hospitals and the dying elderly  51 that there are ‘multiple enactments of death’ within ICUs. Kaufman (1998) shows how ICU physicians, particularly in America, do facilitate and enact death once they know of its imminence and try to reach an agreement with family members. There are no known studies of such enactments in India to facilitate death. On the contrary, as said earlier, overuse of life-extending technologies for elderly is a common-day experience in urban areas – a feature substantiated in Western studies also.6 In 2005, Dasta et al. reported that approximately 36 percent of ICU patients were mechanically ventilated at some point during their ICU stays and on the average they were 63.5 years. Although much of the treatment is ‘futile’ since the elderly are dying anyway, the financial implications of such treatment decisions are huge. Given the fact that one episode of hospitalization is enough to account for 58 percent of per capita expenditure of the family, such treatments push many below the poverty line (Ghosh, 2010). While some researchers consider the ICU costs to be much lower than in other places in the world, it comes as no comfort for a poor country like India where more than 40 percent of those admitted to an ICU have to borrow money or sell assets. Absence of protocols in medical decision-making Absence of protocols for medical decision-making in hospitals seriously impacts the dying elderly (cf. Mani, 2003). Pandya (2005) laments that age by itself plays a small role in treatment decisions regarding terminal illness, although this observation needs further substantiation since conflicting information prevails. Of the patient factors considered important in end-of-life decisions, age was considered important in a survey by Barnett and Aurora (2008). The Indian Society of Critical Care Medicine (ISCCM) in 2005 ushered in initial steps towards improving EOLD in Indian ICUs by providing a clearly stated professional position. Subsequently, Balakrishnan and Mani (2005) presented several cases that highlighted medico-legal complexities, challenges and chaos prevailing in ICUs. Two of them are specifically related to elderly patients. The first case pertains to a highly comatose 68-year-old lady who was admitted with a severe lung infection that led to multiple organ failure. For over two weeks she was put on dialysis, mechanical ventilation, artificial nutrition and large doses of several vasopressors. Much to the consternation of the family despite a hopeless prognosis, all the life-sustaining therapies were being continued in full measure. The family members reminded the doctors of the value history of the patient in favor of nonprolongation of treatment. But the doctors convinced them that withholding any life-sustaining therapies would not be possible since euthanasia is illegal. Instead, they suggested that withdrawal of these therapies would be possible only if the family takes the patient away against medical advice (commonly referred to as Left Against Medical Advice – LAMA). However, the family was apprehensive to take such step and thus requested for a second medical opinion. The hospital policy was also clearly against withdrawal of ventilator support and favored scaling down the medical interventions without adding new treatment. Antibiotic doses were reduced and dialysis support was also stopped.

52  Indian hospitals and the dying elderly Accordingly, orders were passed and recorded as a case document. The family members were allowed free access to the patient, and social workers provided emotional support. After a day, the patient passed away peacefully. According to Balakrishnan and Mani (2005), the case illustrates absence of good management of dying patient due to self-defensive attitude of the doctors and their ‘mechanical’ training to restore life by all means, oblivious to the wishes and sentiments of the patient/family. Doctors also seemed to equate holding back of inappropriate therapies with euthanasia. Further, the authors consider LAMA for dying patients as callous and inimical to caring. There is a felt need for ethical guidelines and awareness of laws on withdrawal and withholding of therapies to avoid misuse of EOL decisions. The case also illustrates lack of clear legislative provisions on withholding/withdrawing of inappropriate therapies and need for ethical standards for appropriate medical decision-making. The second case refers to a 75-year-old patient with metastatic prostate cancer who was transferred from another hospital after attempts to wean him off mechanical ventilation had failed several times. He was fully conscious, aware of his deteriorating physical condition and did not wish to be sustained on ventilator. His family supported his decisions. Despite the patient’s request not to extend his life artificially, his physician continued to postpone the discontinuation of life supports due to fear of legal hassles stemming from equating withdrawal of ventilator support to abetment of suicide. Finally, after six weeks and several failed weaning attempts, the doctor gave the patient two options: signing the LAMA form and thus refuse all treatment, or allow him to make one last attempt at discontinuing the ventilator and not reintroduce it if the attempt failed. In other words, he seemed to be more comfortable about not reinitiating support and felt that the passive act of withholding support would be viewed differently from withdrawal. The patient was assured compassionate care with adequate pain management. The patient and family chose the second option, and the patient’s end came soon and peacefully. The case highlights the need to consider the patient’s right to refuse treatment. Suicide laws confuse the issue because it concerns only a deliberate act to destroy oneself in the absence of any disease. According to the authors, Articles 217 and 148 of the Constitution of India, which emphasize fundamental right for protection of life and personal liberty, need to be restated to give a new meaning to the right to make autonomous decisions to die with dignity in terminal illness. The doctor’s moral obligations need to be taken into account rather than interpreting sections 3069 and 30910 of the Indian Penal code (IPC) narrowly. There is ethically no difference between withholding and withdrawal of life support, as both serve to stop futile interventions. The right to receive palliative treatment is essential to the implementation of forgoing life support, as it is the physician’s foremost duty to alleviate pain and distress. If embroiled in litigation, the authors suggest invoking section 88 and 8111 of IPC because while the physician has the knowledge of the consequences of his acts of omission or commission, he does not intend the same. The authors suggests that the Section  81 may be particularly invoked in relation to decisions of withholding or withdrawing treatment because these decisions are taken deliberately to spare the patient and his family the greater harm

Indian hospitals and the dying elderly  53 of unnecessarily prolonging the dying process by adding burdensome, expensive and often painful treatments. The ISCCM consensus Ethical Position Statement released in 2012 developed a framework and practical procedure for limiting inappropriate therapeutic interventions with a view to improving the quality of care of the dying patients in the ICUs. This guideline is a revised version of the 2005 article, enriched with more international examples of ‘best practices’ in strengthening palliative and EoLC in hospitals. The paper enumerated few practical measures to be used by caregivers as a ‘bedside checklist’ covering different aspects like communication, modalities of limiting life-prolonging treatment, mechanisms for shared decision-making, legal obligations, documentation of EoLC decisions and caregivers’ consensus. The report noted reluctance of the Indian physicians in initiating EOLDs and cited evidence of unintentional foregoing of life support and high rates of patients discharged terminally under LAMA. In public hospitals where services are highly subsidized, EOLD rates in ICUs are very low since both the patients and physicians are reluctant to forego sustaining treatment. Also, it appears that majority EOLDs comprise of withholding or DNR decisions and withdrawals comprise only a small number (cited in Mani et al., 2012). While advanced chronic disease, premorbid, fully dependent state and unresponsiveness to treatment were most frequently cited reasons for these decisions, EOLD was not independently associated with advanced age. The report noted several impediments to change in critical care practices in India: paternalistic orientation, a curative rather than palliative approach to disease, physician’s fear of providing suboptimal care or of possible criminal liability of limiting therapies. Legal anxieties have been the most important factor. These papers from critical care specialists offered an opportunity for the Palliative Care specialists of the Indian Association for Palliative Care (IAPC) to put forth their own Position Paper for improving care during dying and facilitate ‘good death’ through access to palliative care, pain control, symptom management and overall EoLC awareness (see Macaden et al., 2014). The paper particularly addressed needs of patients dying in hospitals. This was soon followed by an integrated care plan proposed jointly by ISCCM and IAPC involving both critical care and palliative perspectives was released as late as in 2014 (Myatra et al., 2014). The collaboration effort significantly replaced the traditional perception that these two domains are mutually exclusive. This guideline introduced certain palliative care components into mainstream medical practice. For instance, it suggested provision for separate space for palliative care, training programs, and psychological and spiritual counseling in hospital set-ups. It also emphasized patients’ engagement in medical decision-making, use of verbal and nonverbal forms of communication to facilitate patient-doctor interaction, resolving different types of conflicts and so on. All these papers drew sufficient academic response from medical fraternity in the form of editorial issues, rejoinders and review articles, the latest being an attempt to systematize end-of-life care decision-making process within hospital procedures (Kumar, Psirides, Maheshwari, Chawla and Mandal, 2015). It adopts a Wellington ICU-based format to systematize decision-making

54  Indian hospitals and the dying elderly involving palliative interventions like spiritual care, presence of family members near the deathbed, extubation procedures and stopping further diagnosis after consensus decision to forego life is made by physicians and family members. Overall, these developments in end-of-life planning appear to be still suggestive and not conclusive; suggestions are mostly at the conceptual level rather than practical, are drawn more from Western frameworks rather than addressing the Indian health care reality and rarely address the cultural context of dying in India. In many regions of the country, ICUs have poor infrastructure and services, which make implementation of a ‘centralized’ EoLC guideline difficult. Crammed noisy spaces that lack privacy limit compassionate caregiving in the sense proposed by the policymakers. It may therefore be said that the proposers have largely failed to generate context-specific recommendations to suit the Indian reality possibly on account of the prevailing information deficit on EoLC. It is also difficult to dismiss the fact that the local culture of biomedicine in India has been largely influenced by principles of Western medicine. The Indian legal system too supports Western bioethical principles. The net result is a superimposition of alien values on a vastly different sociopolitical and cultural system. Inadequate Indian legal responses to issues of death and dying make the entire EoLC debate patchy and socioculturally and politically disengaged and contribute to poor guidelines to scale down aggressive treatments, particularly for the elderly, which in turn result in ethical complexities that bog down both doctors and patients. One may, in this context, again refer to Mohanty’s study on two nodal cancer treatment centers in Odisha, where she notes that the ethical complexity in end-of-life decision-making does not arise from excessive medicalization but from acute deprivation of medical facilities and medical care during the end-of-life. Her findings suggest that while withholding/withdrawing of treatment are fairly common decisions in end-of-life, these decisions actually take place due to structural constraints (viz., technical failures in ICUs, lack of modern treatment facilities, lack of resources, etc.) and reflect the paucity of medical services rather than excessive medicalization of death. Physicians were found to routinely practice withholding/withdrawing of treatment (despite absence of specific guidelines) while paradoxically denying the exercise of such treatment options. There was also considerable ambiguity about the contexts where such procedures could be deployed and the researcher attributes this not only to lack of operational guidelines but also an inadequate medical curriculum (Sadhu, Salins and Kamath, 2010). Physicians in her sample were ill-equipped to handle debates, prevalent in the international forum about death and dying issues. Considerable confusion was reported surrounding the complex language of biomedicine – terms like medical futility, brain death, physician-assisted suicide, etc. – with majority of physicians not considering any treatment to be futile under the cultural belief that physicians are ‘lifesavers.’ This had serious implications for the quality of dying. One way of understanding the existing confusion among the physicians in her sample is to acknowledge vast differences in medical curriculum and practice between more advanced medically served centers and the less-equipped ones in different regions of India. The existing structural and operational constraints in latter settings actually do not permit

Indian hospitals and the dying elderly  55 the practical implementation of many important and newly developed concepts like brain death to ease the process of prolonged dying. In few cases, physicians were aware of these terminologies, but they rarely applied them in clinical settings due to absence of medical technologies.

Ethical complexities in end-of-life care Adhikary and Raviraj (2006) present a case, one among many, that leaves both doctors and the family of the patient in deep confusion. It corroborates the sheer unpreparedness of hospitals in end-of-life decision-making. The doctors who authored the paper narrate a situation when they witnessed cardiac failure of their patient in the ICU and were perplexed since the patient did not have a signed DNR. The attending doctors were left with no choice but to manually resuscitate the patient in a controlled environment of the Operation Room. The family, however, was unhappy with the procedure. Although the case pertains to a 45-year-old man with hepatitis and features of hepatic encephalopathy, it also deeply reflects the realities in elder care. The patient was admitted to the department of gastroenterology and hematology of a hospital in Vellore after he reportedly had disorientation, passed blood in the stool and developed a generalized swelling all over the body. He was administered antibiotics, and his central venous pressure was monitored. The medical treatment was discussed with the patient’s relatives. But, unable to anticipate a serious crisis and emergency, the doctors did not discuss the DNR orders of the patient since he was hemodynamically stable when taken to the operation room. However, on arriving there, the doctors noticed that the patient had no pulse and no signs of spontaneous respiration. In an emergency, external cardiac massage was started, and the patient was intubated and ventilated. After intratracheal and intravenous administration of drugs and resuscitative measures for 4 to 5minutes, cardiac activity was restored, and he reverted back to sinus rhythm after about 20 minutes. However, a post-crises discussion with the relatives provoked much resentment, and they declined to provide any financial support for the resuscitation efforts as well as for further terminal-care measures. The patient was shifted to the gastroenterology High Dependent Unit (HDU) and was mechanically ventilated till his family requested the doctors to stop further resuscitation. On reaching HDU, the inotropic support was withheld and the patient died after 24 hours. Unlike Isla in New Zealand who was put on LCP, this patient in India died in a rather chaotic fashion, amidst a situation characterized by lack of shared decisionmaking. Little is known about the patient’s own wishes and the level of pain and symptom management addressed by the team. Poor guidelines for terminally ill elderly complicate issues for initiating or withdrawing treatment, and it is not rare to find elderly who are kept technically alive but are functionally dead. Physicians themselves are no less uncomfortable about this situation. Pruthi Sonal (2013), a student of the University College of Medical Sciences in Delhi, recounts her experience of dealing for the first time with an old, frail lady of over 80 years for whom death was imminent but medical interventions were still continued. Doctors went on doing whatever possible for keeping the old, almost-unconscious woman alive.

56  Indian hospitals and the dying elderly Pushed to almost one corner of the ward, her tooth was ruthlessly broken to let in the endotracheal tube, her mouth was covered with the oxygen mask for days and her papery skin was perforated at various spots for intravenous intubation as she lay unconscious and tired. The frail body rejected any further fluid and the heartbeat was too slow to respond to any intervention. For other inmates of the ward, the lady was almost dead, but the young doctor was in confusion. While her years of formal medical training had built the expertise to listen to the pumping of the chest, it did not train her to interpret darkness in the eyes and the fixed pupil as a sign of impending death. When finally the old lady died, Pruthi felt guilty for not doing enough for the lady. The situation contrasts with Jennifer (2010), a senior medical student from the Department of Family Medicine, University of Wisconsin, during her rigorous attempt to revive a mid-70-year-old patient suffering from dementia. The patient’s narrow prospect of life was cut short by the patient himself whispering, ‘No, no,’ in the doctor’s ears. Thus, while Pruthi repents not doing enough for her patient, Jennifer is happy to let her patient sleep in peace at night after he was relieved of all tubes that supplied nutrition. Also, Jennifer could bid her patient, ‘Good night.’ Pruthi is not a lonely case who wished to do something for one who is dying. There are many doctors who prefer enacting euthanasia or physician-assisted suicide (PAS) for their patients suffering from pain. In a study set in one of the tertiary hospitals of southern states of India, as many as 148 doctors out of 213 supported euthanasia and PAS while few who resisted it cited chances of misuse as the reason (Kamath, Bhate, Mathew, Sashidharan and Daniel, 2011). Although the numbers are likely to vary from one survey to another, it is interesting to find an increasing number of young doctors preferring euthanasia in present times (Kamath, Bhate, Mathew, Sashidharan and Daniel, 2011; Abbas, Abbas and Macaden, 2008). However, despite doctors’ intention to do good to the patients, Barnett and Aurora (2008) show how withdrawing life-sustaining equipment even for patients whose condition is fairly moribund and are likely to die soon become difficult simply because hospital protocols do not permit this. Dr. Rastogi, a cardiologist in the U.S., recounts the sad story of how doctors in a well-reputed private hospital in Delhi were more interested in prolonging life of his 81-year-old mother who had suffered a stroke and spine fracture. She was forcefully intubated and placed on the ventilator against the family’s wishes. The doctors did not seem to have an idea of end-of-life care. To avoid further suffering, his mother was taken home after having signed a ‘Discharged against Medical Advice.’ She passed peacefully surrounded by family members within two hours after arriving at her family home (Rastogi, 2005). At times, despite being convinced of futility of treatment, life-limiting decisions cannot be implemented due to compelling social factors that take precedence over sound clinical judgments. Many times, families are unwilling to ‘let go’ of their frail elderly because their own lives precariously hang on to elderly person’s resources, particularly pension funds. In India, there are quite a few families depending on elderly earning members (Ministry of Statistics and Program Implementation, 2016). Sometimes, unmarried/widowed daughters caring for

Indian hospitals and the dying elderly  57 their parents are, in turn, financially safeguarded by their parents’ pension, no matter how meager it may be. The doctor in such cases is forced to weigh the consequences of life-limiting decisions against withdrawing succor for the surviving members. Such decisions often inadvertently result in bed-blocking caused by elderly patients overstaying in the hospitals. Praveen, Biradar, Hafiz, Kama and Neelkanta(2012) note that despite this emerging as an important issue for discussion in monthly meetings in most tertiary care hospitals, no serious estimates exist. Their study showed that the average age for being a bed-blocker was 67 years, and that 31 percent of the sample was highly dependent and had a poor score on Abbreviated Mental Test. This group is likely to require Long Term Care. About 22.6 percent of them were independent, and this group could be responsive to a rehabilitative social care program that would help them to function efficiently in the community. The authors rightly suggest community-based rehabilitation programs involving community health specialists, physiotherapists, occupational therapists and medico-social workers. Such studies, as the ones cited above, highlight the poor attempt to optimize resources in acute-care hospitals. There are other unconventional turns with respect to bed-blocking reported by the media. Many elderly are forced to stay in hospitals, as they have none to take them back home or attend to them there. Yengkhom (2012) reports how a bed in the neurosurgery unit of a prestigious hospital in Kolkata is occupied by a 64-year-old lady who had suffered a hip fracture. After a successful surgery, her relatives never returned to take her home, disowned her and turned her status almost to a housemaid. Instead of discharging the woman, she was on humanitarian grounds, allowed to continue to occupy the hospital bed. Such patients get new identity associated with their bed numbers; they help the hospital with small jobs like transporting files and also identifying and cheering patients in distress. It is understandable that in a care-starved environment these patient-turned-counselors play an important role. Indeed, many elderly step inside the hospital premises never to return back to the community. There are other complexities in end-of-life care centering on the role of the patient and family in medical decision-making. A general recommendation that flows from recent literature is the need for their inclusion to resolve much of the chaos in EOLD. However, it is not clear how and when this interface in doctorpatient relationship could be achieved in process of medical decision-making. It is indeed not possible for overworked doctors to be with the dying patient in all stages of emotional turmoil till the patients (or their family) come to terms with death. In India, death prognosis is very often not aided by shared decisionmaking because of time pressures and difficulties in translating complex biomedical terminologies to poorly educated patients. Mohanty (2004) notes that the nature and context of decision-making needs to be explored significantly before too much emphasis is placed on patient autonomy and shared decisionmaking. In her sample, 20 out of 39 physicians (51.28  percent) used a purely paternalistic decision-making process constrained by structural factors like poor doctor-patient ratio, crammed time schedules, illiteracy of patients, etc. Physicians, instead of going through an elaborate consultation process, hastily assess

58  Indian hospitals and the dying elderly the patients’ ailment on the basis of their self-reported symptoms and complications. As a result, majority of patients were not satisfied while communicating their pain experiences and appeared to be suffering from a feeling of being lost and being avoided by others. The notion of ‘competent’ decision-making has an interesting connotation in Mohanty’s study. While in the West competence is associated with the moral right of decision-making of a patient who is endowed with sound cognitive abilities, in Mohanty’s study the ability to ‘competently’ make autonomous decisions was linked to one’s role as the major bread-earner in the family and the ability to effectively manage treatment expenses. Interestingly, doctors considered paternalistic decision-making as an act of beneficence toward people who were not literate enough to comprehend the complexities of treatment decisions. Age and clinical condition of the patients played an important role in such decisions. Under such circumstances where paternalistic ethos in decision-making prevails, Advanced Directives, even if recognized, are not likely to offer solace to patients, families and doctors. It would not be an overstatement that overburdened health systems and weakening family bonds provide little hope for respecting dying persons’ wishes, particularly when they are old. In general, it is a loose patient-doctor/ patient-family relationship that ends up with at times, helpless doctors making efforts to resuscitate while the discontent and anxious family remains largely unaware of what is happening behind closed doors of the operating room. And at times the situation is reversed with callous and negligent treatment and care. This is exemplified in the case of an aged man in his mid-seventies, who suffered a mild stroke and was admitted to a plush hospital. For the next seven days, he was subjected to battery of tests, each of few hours duration. Every day, his daughter anxiously waited in the lobby to meet her father, but could hardly sneak through the security guards and attending doctors to get to his chamber. She was clueless as to what was happening to her father till the end of seventh day when doctors declared her father dead. The distressed daughter finally returned to her house only with an inflated medical bill, enlisting service charges from doctors whom she could hardly identify and recognize.

Chaotic hospital discharges: the half-way conveyer belts12 For those elderly whose lives get extended in the heroic struggle to ward off death at any cost, the acute care discharge is equally chaotic without consideration of how the patient would fare in home setting, especially when the structures that foster continuum of care are absent. In some cases, hospital discharge decisions are taken not because the medical crisis is over but because death is imminent, i.e., on grounds of futility, with the doctor saying, ‘Nothing can be done. Take the patient home.’ In India, often this is based on a backdoor policy to escape legal complexity and avoid social conflict (Mani et al., 2012). Yet as mentioned earlier, medical futility as a well thought-out strategy is not used by doctors. Then, there are cases of hospital discharges that take place on financial grounds as when patients/family members unilaterally decide to withdraw treatment, unable to pay

Indian hospitals and the dying elderly  59 for the cost (Mani, 2006). As opposed to these consensual arrangements, there are discharges, especially in the private sector, involving a bitter battle of sorts with the hospital/nursing home refusing to discharge the patient – a strategy often attributed to stealthy measures to inflate medical bills. In a recent incident from Bhopal, a man alleged that doctors of a private medical hospital continued treating his wife for days after she had already expired (Ghatwai, 2014). While the 56-year-old lady died of severe cardiac arrest, the doctors forcefully kept her on ventilation, generating fake medical records to show that she had recuperated. To further swindle the family, the doctors did not let the husband go near his wife. Meanwhile, doctors kept asking the family for money to purchase medicines. The medical bill finally became as huge as Rs 850,000! While this case is now under court’s jurisdiction, such incidents are not uncommon. This contrasts with the scenario in many advance countries like the Netherlands and Scotland, where discharges are planned and essentially based on respect of a ‘good death.’ In Scotland, the Marie Curie-Delivering Choice program launched in Tayside in 1996 skillfully handles and regulates inappropriate admission and discharges. The program also aims to create an interface between hospital services and social work. In fact, although governments are hard-pressed to regulate the admission and stay of the patients in hospitals in order to curtail the escalating cost of insurance programs, discharges do not become totally chaotic, nor do they compromise with the quality of care that the patient wishes to have during last few days of survival (Davies and Higginson, 2004). The case of Choto mama illustrates the cumulative problem arising from poor prognosis, unethical discharge and absence of alternative care settings. Choto mama was only 60 years old when one day he slipped from his commode and hurt his back. Then onward, he kept consulting several doctors – the best orthopedics and neurologists in the town. Despite subjecting him to several diagnostic investigations, doctors failed to detect that he was silently slipping into a coma. He was discharged home and remained there for five long years as a brain-dead patient. While the hospital where Choto mama was last admitted was unwilling to retain the patient, his sons, who resided in a far-off city, had an equally tough challenge in managing their father at home and made frequent visits to their old parents. Many hospitals, in their tireless endeavor to establish themselves as primarily death-defending institutes, strategically use discharge decisions to avoid tarnishing their image. This is especially so when errors in clinical prognosis take place due to physicians’ variability in understanding patients: their physiological makeup, clinical history and personal choices in addition to different procedures followed during treatment (Ghosh, 2004). As opposed to the above case, there are examples from Western countries of good discharge based on precise prognostication aided by effective communication. This is illustrated in the case of a 58-year-old woman from Netherlands who was admitted to hospital for diagnosis and debulking of a tumor that formed in her abdomen. She had a history of melanoma, breast carcinoma and cervix carcinoma. Beuks et  al. (2006) describe how on the day before the diagnostic procedure she collapsed with hypotension and tachycardia. A pulmonary embolus

60  Indian hospitals and the dying elderly was suspected, and the CT scan confirmed it; ICU admission was arranged, but on her way from the CT suite to the ICU, the patient had a circulatory arrest. She was resuscitated because there was no DNR order. After subsequent procedure, the woman became hemodynamically stable with a full neurological recovery. However, considering the complications that had arisen, the doctors conveyed futility of further treatment to the patient and her family. Subsequently, the patient wished to be discharged home. The hospital promptly carried out the patient’s wish, and within next three hours, the woman was released. She died the next night on the birthday of her daughter. Her daughter rang up the team of doctors to express her family’s gratitude toward them. This case bears the evidence of a smooth hospital discharge in accordance with the patient’s wishes. Although the outcome of the treatment was negative, the doctors did not shy away from frank and open discussions with the family. There was no attempt either to prolong the dying condition or turn the home to a hospital. The credit for this goes to both doctors and the patient and family members. Netherlands’ liberal end-of-life care philosophy also contributes to death-accepting culture. It is no coincidence that it occupies seventh position in the quality of death ranking in 2010 and eighth in 2015 by the Lien Foundation.

Poor management of death The insensitivity of the Indian health system toward these human aspects of death and loss is illustrated in the first-person narrative of a woman in her forties following the death of her husband. The case is especially illustrative of large number of issues discussed in this chapter – poor prognostication, lack of continuum of health services, poor communication and total absence of bereavement plan. In other words, the case shows the poor management of death. And as Seymour says, when death is managed badly, it leaves a scar that runs deep (Seymour, French, and Richardson, 2010). A personal encounter with death: a scar that runs deep My husband had been complaining of chest pain for a week. The ‘executive test’ did not reveal any pathology. In fact, it boosted his self-pride on his ravishingly good physique. ‘Why have you come to the hospital for a check-up? You look like a king. Maybe we shall give you some preventive medicines for the bad cholesterol.’ The doctors in the five-star hospital were fascinated by his good looks. At six-feet-six inches, he did look like a king. He too was proud of his looks and towering figure. He especially rejoiced the way people made a police officer, army man and even a zamindar of him. And when he donned the black lawyer’s coat, he was power personified. But then why this sudden pain? The next morning, his blood pressure dropped drastically. The family physician tried hard to stabilize it and kept assuring us of his sincerity in averting a visit to the hospital. ‘You know how

Indian hospitals and the dying elderly  61 ruthless and careless they are in a hospital. The infected saline bottles, the callous attitude of the nurses. They could kill him there through sheer negligence,’ he said. We felt grateful to the doctor, only to realize our mistake by next morning. He had evidently failed to detect the symptoms of an impending cardiac arrest. We had to rush him to the hospital in the wee hours of the morning. The doctors admitted him to the ICU but seemed not to take the symptoms seriously. They assured us the parameters were stable and they could take some time to locate a senior doctor, it being a public holiday. It was India’s Republic Day. It was Saraswati Puja invoking the Goddess of Learning. It was our Anniversary Day, too. By midday, the sun had set for ever on my life. . . All was over. The anniversary card, the teddy bear and the fresh orchids for celebration seemed to stare mockingly at me. Over and over. . . So handsome and so unexpected that he would die thus! A fresh hair cut, a facial massage done just the previous day and his complexion glowing. He looked ready for a date. He looked happy, peaceful and a king even in his exit as he lay inert on the hospital bed. A mask was put on his face but was not connected to any equipment. I was stunned, too stunned to cry. I tried to look for the connection to mask. There was none. And the doctors, who had assured me 10 minutes ago that all was well, all parameters were stable, began to reverse the story. ‘Look, you brought the patient in a critical state. Is it not?’ they said. I was in no mind-set to argue. The specialist doctor who just a few minutes back had assured me, ‘Madam you have been very honest in life. I know that. No harm can come to your husband,’ casually and reluctantly answered my teary call. ‘Yeah, he gave so little time to investigate. We could not even start the angiogram. We have removed the ventilator.’ Later he admitted while signing the insurance papers, ‘Everything connived against him. There were no doctors on duty.’ It was India’s Republic day. It was Saraswati Puja. I was reminded of the many occasions when people beat up the doctors and staff of the hospital establishment in desperation. I wish I too could vent my fury. But I quickly dismissed the idea. I shall not get my husband back. For several years thereafter I was left with suicidal ideations. They call it unresolved grief. Retrospectively, I wish someone could have broken the news with greater compassion. Do doctors know the art of disclosing death? Do they have the art of negotiating death? I do not think so. Death is a failure of medical rationality. It is a medical professional’s personal failure too. Friends and distant relatives had an equally trying time in deciphering the loss. But their meaning making made me more and more weak; they could not help me cope with the loss. ‘Could it be that her family members killed him? Could it be that someone wanted to take the house from them?’ The insurance agents kindled the sorrow still further. ‘How is it that he was never hospitalized earlier? Never

62  Indian hospitals and the dying elderly suffered from a serious malady? Did he then not conceal a disease?’ A new insurance broker whose policy had been purchased just a year ago declined to give us the sum assured. The doctor too looked at me questioningly while certifying Death. All accusative fingers were directed at me. Every one tried to fathom the meanings of this eventuality. None was trained to comprehended life as a whole – Death as an integral part of life. Not even me. I became a suspect in my own eyes. The survivor is, with few exceptions, always overcome with guilt. To some, my husband’s sudden death filled them with awe. They deified him. ‘He did not suffer, died so quickly, painlessly,’ said Didi. He had conquered sorrow, conquered illness and even death itself. ‘God recalls good souls early. He needs them in Swarga, too. How many really deserved such a good death?’ said my aunt. Even in his death, he seemed so larger than life. I felt all the more small before him – the undeserving partner. The survivor must be the one who is not eligible for Lord’s grace. It is difficult to be a survivor. These chaotic experiences do indeed suggest the need for an intermediary personnel who can act as a bridge between the highly technical medical team and the users, a person who could plan admissions and discharges, regulate ICU stays and, at the same time, identify the clinical markers of the patients and convey the same to the family. Current medical writings, particularly the ISCCM guidelines, are in favor of such a professional, identified as the Consultant Intensivist  – a formally trained person in internal medicine, anesthesia, pulmonary medicine and surgery, having professional experience of working at ICUs (Divatia et al., 2006). However, some of the tasks suggested by ISCCM like taking a daily round of ICUs, coordinating with other specialists, checking all the diagnostic tests done or recommended and noting any change in the condition of the patient, indicate that hospitals so far have marginalized these fundamental procedures in their daily activities. These simple measures make a great change in the quality of dying patients. Surprisingly, these now find their place in list of recommendations!

Disrespect for the dead: there is no time to grieve Indian hospitals with poor organization of health delivery rarely treat the dead respectfully. Deceased persons are often returned to the family disrespectfully. The final journey of Deenadayalan of Chennai – an octogenarian freedom fighter who died in one of the hospitals of the city – reveals an unnerving story of humiliation and harassment for the family in their hours of grief (Times of India, 6 August  2013). The family was exorbitantly charged by hospital staff and ward boys for every procedure that was supposed to be done free of cost – moving the body to the mortuary, preserving it for few hours and finally transporting the body to the crematorium. There are many cases where bodies cannot be returned and have to be sent to morgue for postmortem where an equally horrific condition prevails due to lack of maintenance funds. Masum, a human rights organization working in West Bengal,

Indian hospitals and the dying elderly  63 presents the dismal condition of a morgue in the Sreerampur Govt. Hospital, a public hospital operating in one of the relatively developed districts of West Bengal. It shows that as many as 150 bodies have so far piled in the morgue, majority of which are unclaimed and unidentified and some occupy the space for more than three years. Decomposed and rotten, the bodies are kept in a room with no door or windows, no refrigeration or air conditioner. Stray dogs, vultures and kites feast on the remnants of bodies in the compound. A large number of custodial deaths and a slow judiciary investigating into these cases make it difficult to dispose bodies in anticipation of a probable postmortem analysis (Asian Human Rights Commission, 2005). While grief and bereavement all over the world have been acknowledged as integral to death experience, hospitals in India rarely acknowledge the place of grieving. In many countries of the West, bereavement-counseling services offer support to the near and dear ones following the death of someone close to them. Many of these centers have developed multidisciplinary teams comprising of social workers, psychologists and psychotherapists to provide statewide bereavement services, as well as training for bereavement counselors by providing a supervised internship from experienced practitioners. Australia, for instance, affords a good example of Grief and Bereavement programs. The National Hospice and Palliative care Organization in America also provides committed bereavement services for both family members of hospice patients and for the community at large. For a minimum of one year following their loved one’s death, grieving families of hospice patients can access bereavement education and support. In 2014, for each patient death, an average of two family members received bereavement support from their hospice – including follow-up phone calls, visits and mailings throughout the post-death year (NHPCO’s Facts and Figures Hospice Care in America, 2013). In Hong Kong, Kowloon Funeral Parlour organizes funeral rites and offers a variety of services including advice to the bereaved family about funeral rites, arranging religious offerings, coordinating family get-together during the rites, decorating the caskets and so on.

Notes 1 Twenty-two clinical conditions prevalent among the elderly were addressed for quality measurement and the researchers developed an evidence-based set of more than 200 quality-of-care process indicators to evaluate the care provided to vulnerable elders. The latest version of ACOVE covers 392 quality indicators for 26 different clinical conditions of which major focus is given to treatment (35 percent of the total QIs), screening and prevention (31 percent), Diagnosis (20 percent) and finally follow-up and continuity (14 percent) (RAND Corporation, 2004). 2 Electronic Palliative Care summary (ePCS) is a centralized information gathering system that was introduced in 2010 across Scotland. The system collects information about patients from their respective GPs through a simple template and provides them to the staff and service providers dealing with out-of-hours (OOH) services. This enables the hospitals to provide Accident & Emergency services to the patients in palliative care. This is developed by Scottish Government as part of Gold Standards Framework Project.

64  Indian hospitals and the dying elderly 3 The First National Care of the Dying Audit (NCDA) was conducted in England (2006– 07) based on the standards of care in LCP and was followed by subsequent rounds. The latest NCDA report has been published in 2014. While previous audits had been based on the goals of care within the Liverpool Care Pathway (LCP) for the dying patient, the new audit samples the care of dying people in hospitals, regardless of whether they were supported by the LCP or other care pathways or frameworks, and includes more hospitals than the previous audits. 4 APACHE-IV, SAPS III and MPMIII are popular tools used to assess outcomes of ICU admissions in India. However, they are geared to understand aggregate scores and overlook patient subgroups. 5 Global evidence suggests that the more prolonged the stay in hospital, greater is the risk of undergoing multiple and often redundant medical tests (Braddock, Edwards, Hasenberg, Laidley and Levinson, 1999; Dawson, 1993; Zaat and Eijk, 1992). 6 Earle et al.(Earle, Landrum, Neville, Weeks and Ayanian, 2008) show that people residing in areas that are heavily concentrated with tertiary-level hospitals are at higher risk of receiving aggressive care toward end-of-life. 7 Article 21 enshrines a fundamental right of protection of life and personal liberty. Under this law, no person shall be deprived of his life or personal liberty except according to procedure established by law. 8 According to the Article 14, “the State shall not deny to any person equality before the law or equal protection of the laws within the territory of India.” 9 Section 306 of the Indian Penal Code mentions that if any person commits suicide, whoever abets the commission of such suicide shall be punished with imprisonment of either description for a term that may extend to 10 years and shall also be liable to fine. 10 Section 309 lays down the punishment for attempted suicide. The maximum punishment for a term of one year can be awarded. 11 Section 81 states that nothing is an offense merely by reason of its being done with the knowledge that it is likely to cause harm, if it be done without any criminal intention to cause harm and in good faith for the purpose of preventing or avoiding other harm to person or property. Section 88 states that an act not intended to cause death done by consent in good faith for person’s benefit is not an offense. 12 The term is borrowed from Professor Robert George, the president of the Association of Palliative Care,  who said that hospitals are acting like ‘conveyor belts and processing plants.’ He clarified, saying, ‘The problem with hospitals is that they are conveyor belts and processing plants where performance and outcomes are related to turnover rather than the quality of care’ (Swinford and Hughes, 2015). However, the U.K. government, while evaluating the Liverpool care pathway, draws an analogy with a conveyor belt that leads straight to death (Lee, 2013).

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4 The rhetoric of dying in home

We have seen in the previous chapter that a continuing concern in Western countries has been regulating the growing demand and rising costs associated with chronic care provision in hospitals. Many doctors themselves allege that hospitals are keeping too many elderly patients hooked up to breathing machines before they meet their end. Consequently, shifting the site of care to home is considered a meaningful, pragmatic strategy. Aging-in-place policies have especially prioritized the home, romanticizing its close intimate relationships and cherished memories to provide a historical continuity to older people’s lives while safeguarding and enabling self-expression and autonomy.1 The recently developing field of gerontological geography has also brought together a physical-material and cultural-symbolic view in promoting the relationship between place and elderly.2

Response to home care in advanced countries The entire focus on home care may also be contextually located in the debate on institutional versus family care. Historically, what was part of the private domain of the families is now a central political and intellectual issue for social policy. In fact, as Daly and Lewis (2000) point out, current policies associated with the giving and receiving of care provide a unique lens for viewing the changing role of the state. So far, American and European country care policies have been very responsive and have provided diversity of policies and different models for older people at home. Given the fact that caring is difficult and challenging for geriatric patients due to multiple chronic conditions, limited mobility, physical and cognitive impairments and multiple medications, these governments have offered support to families through a policy of convergence, involving cost-effective, multisector and multiplayer inputs combining health care and social services to meet Long Term Care needs (LTC). In simple words, LTC involves provision of care to suit the physical as well as emotional needs of a person over an extended period of time (National Care Planning Council, 2014). The period of assistance might be few weeks to couple of months to as long as number of years. Long Term Care might be temporary if an elderly person is rehabilitated from hospital stay or recovering from any illness or surgery. It becomes an ongoing process if the person

70  The rhetoric of dying in home is chronically ill, permanently disabled or suffering from disease like dementia. LTC services at home range from providing clinical care, nursing – both specialized and paramedical – home alarm, day and night care to even assistance with household tasks, meals-on-wheels, repair services, granny sitting, respite care, etc. According to a recent guide, services within LTC range widely from simple assistance like walking, bathing, dressing, feeding and attending phone calls, to more complex tasks like managing pain, helping with incontinence, preventing risky behavior, counseling and so on. Invariably, the tasks demand involvement of both semiskilled workers as well as skilled professionals like nurses, psychiatrists and occupational therapists. These services not only benefit the patients but they indirectly help families as well. Thus, cooking a meal or fixing an appointment with doctors relieves the family from many of the mundane tasks (Day, 2014). LTC arrangements have been worked out in different ways by different countries. For instance, in the U.S. most Long Term Care at home includes services of nurse, home care aide and/or therapist who come to the home to provide assistance with both basic and instrumental activities of daily living also known as ADL and IADL. These home services are backed by other community support services. Older Americans Act of 1965 (OAA) promotes the well-being of older individuals by providing services and programs designed to help them live independently in their homes and communities. The act also empowers the federal government to distribute funds to the states for supportive services for individuals over the age of 60. For over 35 years, (The) Administration on Aging (AOA) – the principal agency of the U.S. Department of Health and Human Services – has provided home- and community-based services to millions of older persons through the programs funded under the OAA. Services include, but are not limited to, transportation, adult day care, caregiver support and health promotion programs. In many other countries, LTC programs for the elderly include besides mix of health care and rehabilitation services, environmental modifications in the form of redesigned homes and barrier-free architecture for elder living. Australia is a good example of convergence of social care with health care. The country has two important programs: The Home and Community Care Act (HCCA) to cover both younger population with disabilities and the frail elderly and the Aged Care Act (1997) exclusively for the elderly, wherein they are offered a residential ‘hostel care’ as well as ‘nursing care.’ The HCCA program covers eleven services: nursing, personal care, home help, meals delivered at home and in centers, transport, home maintenance and modifications, allied health, in-home respite, day-center care assessment, training, information and advice. Large number of nonprofit-making agencies reenlisted as service providers. Besides, there are other programs that cater to specific population with distinct needs, like income support to aged and disabled, carer support for those engaged fulltime with caregiving duties and carer allowance. In Canada, too, there is Canada/Quebec Pension Plan that intends to work as income maintenance program rather than income security. Besides, there are Registered Retirement Savings plan, and Home Care to support people with permanent disability irrespective of age. Quebec has day hospitals that provide intensive and therapeutic care on outpatient basis in specialized geriatric units.

The rhetoric of dying in home 71 Long Term Care Home Act, Ontario (2010) is a very recent addition and a very sophisticated planned legislation. Besides ensuring that the residents are entitled to receive state-of-art care, it also seeks to bring corrective measures in community by penalizing abusers or taking strict actions against home carers if elderly are found missing or if they return with an injury or infection (Meadus, 2010). In Norway, LTC is broadly separated into Community Care to include day care, recreation clubs, alarm system, meals, etc. and home-based care that comprises of home help and home nursing. The services are in-kind rather than extending cash benefits. In Austria, the LTC Allowance Act covers separately the pensioners as well as nonpensioners. The chief criterion is disability, which enables the persons to stay at home as long as possible. In Germany, the Social Dependency Insurance Act (1994) is a mix of in-kind and cash benefits. The AWBZ Act in Netherlands even covers elderly who are foreigners. This includes variety of support ranging from homemaking, nursing to purchase of need-based services. The Public Insurance Scheme for Long Term Care in Japan includes home-based services like daily brief home-visit, housekeeping, etc., and institutionalized support in case elderly are confined to long-term geriatric wards (Broadsky, Habib and Hirchfled, 2002). China, Sri Lanka, Costa Rica, Thailand, Ukraine and Indonesia are few of the countries where LTC for elderly run. In Costa Rica, there is an interesting program of Day Hospital, wherein 10–15 elderly patients are admitted for two to three months. Most of them are patients with high blood pressure and diabetes but commonly depression. During their stay, the patients receive medical checkup in the morning followed by need-based therapies in the midday that is recommended by a geriatrician. Then in the afternoon, the patients are given simple exercises to stimulate cognitive behaviors. A lunch then follows. Post-lunch there is short discussion session on different issues of self-care like fall prevention, diet control, aging, confidence building, etc., and ends with coffee. Medical assessment is done on every eighth day to plan discharge. If there is high complexity, families are called for solution. If family is absent, then the social workers take all responsibility (Brodsky, Habib and Hirschfled, 2002). The assistance to family caregivers constitutes an important point of concern in most Western countries. In the U.S., 80 percent of elderly – many with several functional limitations – live in private homes in the community, not in institutions (Congressional Budget Office, 2013). Sixty-six percent of older people with disabilities who receive long-term services and support (LTSS) at home get all their care exclusively from their family caregiver, mostly wives and daughters. Twentysix percent receive some combination of family care and paid help; only 9 percent receive paid help alone (Doty, 2010). It is estimated that 65.7 million informal and family caregivers provide care to someone who is ill, disabled or aged in the U.S., and 14.9 million care for someone who has Alzheimer’s or other dementia (National Alliance for Caregiving and AARP, 2009). Around 6 to 7 million people (family, friends and neighbors) provide care to a person (65+) who needs assistance with everyday activities (cf. Family Care Alliance, 2015). These examples show that care work, which has been hitherto invisible in the global statistical picture of social and economic reality, is now being considered as an important

72  The rhetoric of dying in home resource. It is also being increasingly recognized that family caregivers have a differing but a complementary expertise, and hence a partnership with professionals need to be built based on user-participation principles. Also, family carers have a large role to play even when the patient is situated in settings other than the home. The International Labour Office has made a strong argument to deal with care work as a ‘decent work’ commanding economic security, recognition and respect, irrespective of whether it is provided by families, friends and neighbors or by the formal sector (Daly, 2001). It goes without saying that carers do provide a high volume of care that is important for the quality of life of the dependent person, and that government or other care services would probably neither be able to provide equivalent care, nor afford to do so. In many developed countries like the U.K., it is estimated that the state saves 87 million pounds per year on account of family caregiving. Policymakers have thus put emphasis on the need to support carers and interventions for family carers have emerged as an important area of research. Out of a sample of 32 case study countries taken up by the United Nations Population Fund (UNFPA) and HelpAge International for assessment of the progress toward implementation of the Madrid International Plan of Action on Ageing, 18 have provision for care and support for carers (UNFPA and HelpAge International, 2011). The only developed country that does not seem to have made such provisions since 2002 is Qatar. In Australia, Canada, Finland, Hungary, Japan, New Zealand, Singapore and the U.S., there are policies that aim to provide home an important status in the continuum of care. The National Strategy for Carers of U.K. allows, among other measures, changes in pension policies to give caregivers increased social security benefits, improved respite-care service programs and incentives to employers to allow flexible and family friendly employment conditions, increased consultation, planning and provision of community care services (cf. Montgomery and Fienberg, 2003). Caregivers in the United Kingdom are well-organized politically since the caregivers’ movement is intertwined with the feminist agenda of the 1960s and 1970s when legislation resulting in cash benefits for caregivers was advanced and enacted. Equally promising is the Australian government’s National Agenda for Caregivers developed by the Department of Human Services and Health, which considers them as an integral part of the aged care system and as ‘clients’ in their own rights. The government revised the Home and Community Care Act of 1985 in 2007 and the Carer Recognition Bill in 2010. It runs a number of programs like the National Respite for Carers Program, the National Carer Counseling program and provides grants for the carers. In Canada, caregivers are eligible for support services, including limited respite, but are not officially recognized as clients in the health and social service system (Guberman, Keefe, Fancey, Nahmiashand Barylak, 2001). In 2006, the Compassionate Care Benefits was introduced to avoid the serious crisis involved in choosing between keeping one’s job and caring for the family. Employment insurance benefits are provided to caregivers who have to be away from work temporarily to provide care or support to a family member who is gravely ill and who has a significant risk of death within 26 weeks. In Finland, the Act on Support for Informal Care (2006) makes provision for care allowance, services to support caregivers,

The rhetoric of dying in home  73 including respite leave. It also allows caregivers to choose service providers. In Germany, support provided by caregivers as ‘family care’ counts toward state pension, and caregivers are eligible for skills training and home visits, as well as up to four weeks per year of respite care. A major factor driving Germany’s Long Term Care reforms during the 1990s was concern about the increasing burden on families and women in particular and the potential ‘care gap’ due to rising female employment (Evers, 1998). To date, most recipients (72 percent) are cared for at home, and there is heavy reliance on family caregivers as the major care providers (Geraedts, Heller and Harrington, 2000). In the U.S., the National Family Caregiver Support program, established in 2000, acknowledges the needs of the family members who provide support to older people, while in New Zealand, Carers NZ, a national charitable trust, provides information advocacy and support to carers. Among Asian countries, an important feature of Japan’s care system is the importance it has placed on the caregivers. Caregiving has become a social policy issue since the mid-1990s, fueled by population aging that coincides with a decrease in Japan’s capacity for informal care as women join the workforce in increasing numbers. The government has integrated home services and provides day-to-day assistance and protection to caregivers through flexible respite services, cash benefits for lost employment opportunities and good access to community resources and information. Traditional caregiving needs are supplemented with professional nurses, hospice care workers and physical therapists. In other words, the conventional distinction between care in the public and private domain has been blurred. Most countries supporting carers have also financed affordable homes, modification of existing ones and better transportation to support aging-in-place. Future action strategies adopted in European countries include redesigning residences for elderly to allow them to live in barrier-free residences, introducing alternative structures between residential homes and nursing homes in the form of sheltered homes or shared housing or intergenerational homes (Stula, 2012). The assessment report of UNFPA and HelpAge International on progress made in the living conditions of the elderly, post-Madrid Declaration, found that in a sample of 32 case study countries, 6 of the 9 developed countries and 10 of the 23 developing countries had taken action on the objective to develop policies to make elderly stay at home. In order to achieve this objective, national strategies have widely ranged from offering discounts on transportation for elderly, like the one attempted by the Argentinean Government or Australia through its National Seniors Transport Scheme, to financial assistance for home modification as found in Canada by means of the country’s Home Adaptations for Seniors Independence Program. Such instances of national policies favoring aging-in-place are also found in Finland and Hungary, to name a few. In Hungary, provisions to facilitate home care are contained in the 2004 Framework on Hospice care, the Elderly Friendly Home Program of 2003 and the Safety Program of 2004. However, these measures still have not brought in optimal results. A ‘Bundesverband Freier Immobilien und Wohnungsunternehmen’ (BFW) survey in 2007 involving 13 different countries in Europe reveals that less than 1 percent of the elderly have access to a house that

74  The rhetoric of dying in home is age-appropriate and offers barrier-free living (Stula, 2012). In England, despite standards set for Decent Homes as early as 2000 by the Department of Communities and Local Governments, until 2011 only a few could let elderly move freely (Davies, 2014). Some Asian countries have also worked on home care. The Government of China promotes the construction of senior citizens’ lodging houses and barrierfree facilities in public spaces. In Japan, the Act of Stable Living for the Elderly, enacted in 2001, contains provisions to promote the supply of appropriate rental accommodation for older persons. A second act, the Promotion of Rental Housing Act (2007), aims to assist ‘persons requiring special attention in securing housing,’ which includes older persons also. There are also tax reductions for renovations to make accommodations barrier free. The Thailand Older Persons’ Act of 2003 and the Ministerial Regulation on Design and Safety of Buildings and Places for Disabled and Older Persons (2003) aim to help older persons to remain in their own homes. There are also guidelines, posters and other printed materials on appropriate supportive housing. The government is currently considering introducing interest-free loans for home modifications as part of the program of the Elderly Fund (cf. UNFPA and HelpAge International, 2011). Singapore has policies and programs to build flats specifically for older persons and to offer them priority rental schemes. Retaining the nuclear family as the basis of most household units, the government has come up with several schemes to encourage a vast population – 85 percent of the population who live in their public housing flats live in close proximity to their parents. For instance, the Joint Selection Scheme enables parents and adult children to live within the same block of public housing flats or close to each other; the MultiTieFamily Housing Scheme encourages living under the same roof with concessions such as bigger ‘jumbo’ flats, lower down-payments, maximum loans and a head-start in the allocation of the flat (basically a shorter wait period for getting the flat). Granny flats, which are more manageable in size, have also been introduced (Adcox, 2010). Designed for one or two persons, they are popular ways to accommodate aging parents in a self-contained living area usually located on the grounds of a single-family home that can be detached or attached to the dwelling. Amidst all these measures for caregivers, it needs to be borne in mind that although caregiving plays an important role, it may have serious impacts on the caregivers themselves. As mentioned earlier, governments worldwide are growing sensitive to the fact that caregivers need to be supported and nurtured to enable them to maximize the care they can deliver for a long time. Their mental and physical health may be adversely affected, and social life and employment opportunities may be severely curtailed. Research has shown that unmet family caregiver needs and dissatisfaction with the quality of care can lead to negative outcomes, such as prolonged and pathological grief, increased use of health services, caregiver burden and decreased quality of life. Given the fact that large number of carers are women who suffer from such problems, a powerful critique of community care policies has emerged in feminist writing in the last 30 years that focused on the ‘politics of care’ and sought to reveal the sexual division of

The rhetoric of dying in home  75 labor between men and women, the exploitation of women as ‘unpaid labor’ and the role of state in maintaining this inequality. The rhetoric of home care overlooks the fact that aging-in-place is a gendered question structured by genderbased division of domestic labor. Moreover, the concept of care at heart revolves around women and devaluing of their unpaid labor. By the 1980s, however, the above paradigm shifted as feminism moved against the notion of women as victims to celebration of their differences. Accordingly, the focus of care shifted to an investigation of the meanings of care for women – their identity and view of the world – caring ceased to be considered as unwanted labor foisted upon them, it was ‘the medium through which women are accepted into and feel they belong in the social world’ (Graham, 1983: 30). Within this new paradigm, Gilligan (1982) suggested that there are gender differences in the moral frameworks within which men and women operate. Whereas men’s frameworks are underpinned by a notion of rights that are subject to public and rational assessment, women’s are motivated by a notion of responsibility. She therefore posed a female ethics of care against a male ethics of justice. In doing so, she placed care within a new ethical or moral paradigm. Finch (1989) also moved away from the exploitation paradigm into the territory of social obligations to study the normative structures that influence people’s caring activities. Some recent research also suggests the need to move away from a burden model to one where carers derive satisfaction and have argued that caring is not a uniformly negative experience (National Alliance for Caregivers, 1997). Supporting this are tools that attempt to gauge and assess the stresses and strain of caregiving.3 It is often reported that satisfaction derived from caregiving outweighs difficulties associated with care tasks (Lundh and Nolan, 2003; McKee et al., 2009; Nolan, Grant and Keady,1998), and that despite feeling overburdened, many family caregivers do consider caregiving as a life-enriching, empowering experience, especially when they find that their patient is stable and comfortable and appreciates the care given (Milberg and Strang, 2003). However, older caregivers do face age-related challenges and generally suffer more adverse effects of caregiving. This needs serious attention since the number of older carers is increasing, with a large number of them being women. In many countries, they are also the least well-off group and have few social resources to support them. However, two reviews of family care research literature in end-of-life during 1998–2008 (Grande and Keady, 2011) provide a more complex picture with respect to stress and other caregiving effects like closure and satisfaction, levels of self-efficacy and perceived control among young and older caregivers, and suggest the need for additional evidence base.

Questioning the rhetoric Despite the growing enthusiasm about home care, it is still not very clear whether home-based LTC services have eased the problem of the dying elderly patients and their careers. Kane and Kane (2005) critique the existing LTC programs at home by imputing them a patriarchal nature in the sense that they bring greater confinement, thereby excluding elderly from public participation. Then, there are

76  The rhetoric of dying in home groups who outright reject home care. Michael Adams, Executive Director for the Services and Advocacy for the GLBT Elders (Gay, Lesbian, Bisexual and Transgender) of the U.S., feels that there is a growing tendency to move to other alternative settings that are like ‘home’ (KPMG Report, 2011). These include a range of institutions and organizations that provide health and social care for older people – nursing homes, assisted living facilities, retirement communities and care homes. Evidence from different countries of the West indicate that home-based, Long Term Care is combined with care in different community care settings like nursing homes, hospices and adult day care centers when caring becomes too difficult at home. These also include within their coverage traveling families, slum dwellers and people living in the streets – populations who do not otherwise fit within conventional home arrangements (Davies and Higginson, 2004). Comparing three countries  – Austria, Canada and the U.K.  – Frogatt et  al. (2011) find that the funding status of Long Term Care providers sits across the private, public and not-for-profit sector. While Austria has the highest number of public sector providers, the U.K. has the highest proportion of private providers (around 74 percent), which range from large international business firms to small individual owner manager homes. These Long Term Care settings are gaining increasing importance. Kellehear (2011) cites that less than 20 percent die at their own home and that majority of the dying people (most of whom are above the age of 65 years) die in nursing homes or hospitals. In fact, the number of people in nursing homes has tripled in the 20 years since the late 1980s. This pattern is evident more or less in most advanced countries. Many Japanese, despite a strong tradition of co-residence, also seek their last weeks in hospitals or care homes. China has four models of home care that range from providing low nursing care to high-end care, namely, high-end elderly homes, senior communities, affiliated senior apartments, high-end nursing homes and destination resort and senior sanatoriums (AmCham China, 2013). A number of business models are fast emerging – one of which is to exclusively restrict few apartments in a given residential complex for senior citizens. This allows elderly to stay independent but at a close proximity to younger generations.4 The reason for dying in nursing homes and hospitals rather than in family homes is not clear and evident. It is also not known whether family homes provide autonomy to the dying older people to carve their own scripts at the end-of-life and whether they encourage freedom in dying. Also, little is known about whether the experience of dying at home is different from the experience of aging-at-home since what home means for a dying elderly is not the same for one who is living with old age. Home – its material comforts, familiarity and even ­relationships – may assume a very different meaning when it becomes a space for dying and end-of-life care. Even caregiving for an elderly with relatively good health but with restricted functionality, and for one whose death is impending, may be different and involve altogether different challenges and meanings. It is for this reason that despite an integrated home care management, a fully supported dyingat-home has not been possible in many countries. Matsushige, Tsuisui and Otaga (2012), commenting on Japanese expertise, consider home care to be in a state of

The rhetoric of dying in home 77 imperfect development. The researchers identify some factors that appear to be necessary  – palliative care and family education, particularly knowledge about emergency care, contact information and preparing for patient’s eventual death. In addition to these, the rhetoric of home care often overlooks the meaning of home for the dying elderly when gendered personal conflicts and tensions have already been part of aging-at-home experience. The dying experience is likely to be influenced by gendered landscapes of later life, including gender differences in perception to care (Blaikie,1999). Suicide rates in many Asian countries (otherwise known for family ties) provide indirect evidence of the difficulties experienced in aging-at-home (Chen, Wu, Yousuf and Yip, 2012). It is estimated that Asian countries account for approximately 60 percent of the world’s suicides. In comparison to Western countries, Asians have higher elderly-to-general-population suicide ratios. Acute life stress (e.g., family conflicts, job and financial-security issues) play an important role in perpetrating suicides. Data are consistent with the argument that Asian elderly, especially elderly women, are currently very vulnerable in their socially constructed total dependence on their children – their sons and daughters-in-law – a fact substantiated in Indian context as well. It was also found that the invisible but essential mother-in-law and daughter-in-law dyadic relation has undergone drastic change to the point that in many families their relative positions have been reversed. In any case, there are reasons for believing that the mystification of family care may merely reproduce different forms of social inequality, and under such circumstances, many elderly prefer to stay alone or in the hospital. However, suicide risk analysis cannot elicit a full picture of the impact of social, political and cultural forces on the elderly well-being, and more direct investigations are needed. In one study conducted in the U.K., participants who lived alone or without children tended to argue that the hospital would be more suitable as a place of death since living with extended families in the limited space available in their London homes was impractical (Wilson, 2013). There is an increasing number of old patients who are living and dying alone with no family carers to provide endof-life care. A survey of 116 local councils in the England and Wales showed that 4,900 funerals in 2007–8 were paid by public funds because there were no family or friends able or willing to pay (Kelbie and Davis, 2013). A report prepared by the Social Care Institute of Excellence (SCIE, 2013), based on evidence drawn from over seventy research guidance and policy papers, shows the complexities involved in helping people to die at home. Amongst a host of measures that need to be taken before homes emerge as enabling zones for dying are good identification of the dying and effective information and support to carers on dying process and services. Carers need training to carry basic nursing tasks and issues related to managing the dying – preventing dehydration, attending to feeding, swallowing, incontinence care, access to specialist services and equipment, managing complex medications and improving general patient comfort, including positioning and lifting of the dying patient. Structurally, recognizing homes as part of the continuum of care for the dying involves developing a network and coordination of arrangements within local settings. These include

78  The rhetoric of dying in home involvement of health and social care professionals capable of providing good palliative care – both generalist and specialist palliative services, proper investment in recruitment, training and supervision of health and personal care assistants and domiciliary care staff who are well qualified to care for the dying. Finally, home care for the dying requires improvements in hospital discharge planning based on good assessment of homes in terms of environment and nursing and peoples’ access to improved health care technologies like access to Telecare services. Despite detailed guidelines, the SCIE report acknowledges certain conditions where dying at home is not possible, and surprisingly this includes the dying of older age groups. Also, the report identifies some physical conditions where palliation is not available – like COPD, stroke, Parkinson’s and dementia – all conditions afflicting the elderly. Paradoxically, for COPD end-stage patients as well as for demented patients, home is perhaps the most viable locale to reduce risks. However, the means to actually implement home care for such patients involve introducing hospital set-up at home (Escarrabill, 2009). In the process, the home runs the risk of losing its familiarity as family members become overcautious and distance themselves from the dying patient. Even the oxygen cylinder kept at the bedside of the patient alters the entire familial relationship. In other words, considering home as a space for the dying elderly is especially challenging. More evidence is necessary to understand the impact of hospital-at-home services and the effect of technological inputs on caregivers who try hard to adjust to different and changed life circumstances and modified material arrangements at home. Ten studies reviewed by Sasha et al. (2009) show that when compared to in-hospital care, hospital-at-home services may reduce the chances of dying. However, later on, admissions to hospital may increase. Hospital-at-home may not reduce or improve quality of life, function or cognitive abilities (such as mental alertness and thinking) more than in-hospital care. And while it may improve the satisfaction of patients at home, it is not known how it affects the carers. With respect to costs, hospital-at-home services may be less expensive than in-hospital care. Although these studies center around people who were on average 70 to 80 years old and thus provide good evidence, the determining effect of the overall health system of a country on such services is not clear. Alivizatos, Gavala, Alexopoulos, Apostolopoulos and Bajrucevic (2012) made a retrospective study of 31 patients, with 27 patients who underwent gastrostomy and 4 who underwent jejunostomy, all having feeding tubes inserted and discharged on long-term basis to homes. Patients were followed up for a mean of 17.5 months. The most frequent tuberelated complications included inadvertent removal of broken and plugged tube (45.1 percent), tube leakage (6.4 percent), dermatitis of the stoma (6.4 percent) and diarrhea (6.4 percent). There were 92 unscheduled health care contacts, with an average rate of 2.9 contacts over the mean follow-up time of 17.5 months. The researchers concluded that in patients receiving long-term home enteral nutrition, feeding tube-related complications and problems are frequent and result in significant health care use. Personal narratives show that not all families cope well with dying at home. The story of William Tosh (2013) reveals how tough it was for Tosh’s family to accommodate their dying father at home when he wished to return to his family

The rhetoric of dying in home  79 from the hospital. Tosh narrates how his father with excruciating pain, breathing difficulty and rapid progression of disease was hospitalized in the early 2012. Although the hospital had a palliative care team to attend to Tosh’s father, his father was adamant to return home and die peacefully. Respecting his wishes, Tosh’s father was immediately discharged home without consent of the family. The hospital’s decision to transfer his father back to home could be easily implemented because the family was connected with physicians, social workers and teachers to enable them cope with the crisis. Despite all such provisions, Tosh found their home to be suddenly invaded with hospital paraphernalia: big hospital bed complete with inflated mattress, a commode, an oxygen cylinder, carers visiting four times a day and night sitters and nurses from district nursing services. The big bed that was placed at the center of the home displaced other furniture of the family, making the residence an extremely crammed space. Tosh describes that although his father’s physical and medical needs were fulfilled, the family of four other members suffered an inexorable distress while coping with the crisis but carefully camouflaged it. While the family was desperately longing for a separate space to vent their emotion, Tosh’s father died peacefully. The narration expressed the emotional turmoil that the Tosh family underwent and the a sense of guilt while caring for their dying member, yet glad to be able to acquiesce to their father’s last wish. Tosh suggests that while offering patient-centric care is important in medical practice, it needs to encompass the total patient environment. Tosh’s story is shared by many families around the world. However, it flings up an ethical debate as to whether continuing treatment of Tosh’s father in hospital despite his wish to return home could have relieved Tosh and therefore the action was justified, or whether Tosh should not have expressed his frustration in serving his dying father the way he wanted. It also questions whether Tosh’s father should have been recommended a normal bed that fitted domestic environment and thus would have made it easier for the family to attend him. However, as he was fully bound to bed, unable to carry out daily activities, it made sense to put him in a specially designed one that at least made him die comfortably.

Dying at home in India Given the complexities mentioned in home care, one can now turn to dying in India where home care is neither supported by the state (except in a small way in Kerala), nor considered as part of the continuum of care. What does it mean to be old and dying at home? What does home mean when older adults get into end-of-life situations? Not much is really known about the challenges, but indirect evidence of dying at home being extremely difficult may be drawn from the following positions. Poor level of support for aging-at-home First, is the poor level of support for aging-at-home, which is likely to be accentuated in end-of-life. Although India, like many other Asian countries, is held as a model of emulation for filial piety, it is no longer an important component of life

80  The rhetoric of dying in home in modern times. While the family still continues to be an important source of care, it is definitely dwindling as a support structure and often harbors abusive, exploitative and damaging relationships that may not support older people in endof-life. A 2013 survey report released by HelpAge India, ‘Elder Abuse in India,’ brought to notice that nearly 23 percent of people above the age of 60 years experience abuse. This was nearly one-fifth of the total 6,548 respondents that the survey covered from 24 cities across 20 states. These respondents chose to break the silence and report violence compared to those who didn’t confide despite being guaranteed confidentiality. According to the report, sons were the primary perpetrators of violence (around 34 percent) followed by daughters-in-law (24 percent) (Hindusthan Times, 2013).5 Violence was in the form of disrespect (41 percent), verbal abuse (32  percent) and even went to the extent of beating and slapping (27 percent). These figures are significant for our arguments that intend to show that quality of death and dying at home may be very poor under such conditions. What makes the elderly so vulnerable in the end-of-life is their growing dependency status. The 2011 census of India shows that old-age dependency ratio has risen from 122 in 1991 to 131 in 2001 and finally to 142 in 2011. It ranges from 196 in Kerala to 63 in Dadra and Nagar Haveli. Looking at the high dependency of elderly in Kerala and Tamil Nadu – two progressive southern states of India that have made high progress in palliation and home care – it is doubtful if the elderly are actually empowered to choose their preferred place and ways of dying. The situation is more alarming for women. Dhillon and Ladusingh (2013) estimated that old-age dependency ratio for women is likely to be 7.2 for females in 2015 and 9.0 in 2025. An ever-increasing old-age dependency among women could be attributed to very few age-specific opportunities for them. Even if there were, it is uncertain if improved workforce participation would improve their access to health care facilities, particularly in the last phase of their life. What makes such evidence alarming is the fact that the family can no longer be relied on as the principal support agency. The Potential Support Ratio is expected to decline rapidly from 12.4 in 2000 to only 4.4 in 2050, thereby, showing how helpless elderly are likely to grow in the coming decades (United Nations, 2002). Moreover, an increasing number of adults are maintaining very old and fragile relatives. The Parent Support Ratio is also expected to increase to 6.7 in 2050 from 1.9 in 2000. Vulnerability stemming from such conditions finally reflects in a rising rate of elderly suicides. Using verbal autopsies, a study by Abraham, Abraham and Jacob (2005) document very high suicide rates for the years 1994–2002. In 2012, the National Crime Records Bureau data shows that although elderly suicide is lower than younger population, it has claimed more than 11,000 lives for those above the 60 years of age. Also, the number of males who committed suicide exceeded the females; the ratio of male to female suicides was 1:0.66. Illness constitutes a major cause for suicide followed by problems in the family (NCRB, 2012). The suicide rate for men and women increased with age. The average annual suicide rate was 189 per 100,000 for people over 55 years of age. However, some scholars hold that computed as a percentage of the general population, suicide figures are still low; out of a total 6,312 cases of attempt to suicide over a period of 5 years,

The rhetoric of dying in home 81 only 47 cases were in the elder-age group (Rao and Madhavan, 1983). Low suicide rates among elderly is supported by another study in northern India by Sharma, Gupta, Relhann and Singh (2007), where the incidence of elderly suicide (age group above 60 years) was 2 percent and by Mohanty, Sahu, Mohanty and Patnaik (2007) with reported incidence of 2.7 percent owing to illness (51.16 percent) and family problems (20.93 percent). Commenting on suicides of two elderly people in one single day in Chennai, Dr. Natarajan, a noted geriatrician, considers such suicides to be a result of loneliness and perceived dependence on children for medical help. In most cases, chronic ailments lead to loss of hope and suicidal ideations (Times of India, 2012). There are also reported cases of suicide of seriously ailing elderly killing their spouse, and at times even children, unable to shoulder their family responsibilities due to poor health (Times of India, 2010). Such love-borne violence arising out of the pathos of neglect in end-of-life and poor welfare measures directs our attention to the need for more serious involvement of the state. So far, the Indian state’s role in social security has proved to be a great deterrent in providing adequate support to the elderly despite it being recognized as the concurrent responsibility of the central and state government. Different ministries under the Union Government like Health and Family Welfare, Finance, Home Affairs, Railways, Civil Aviation and Road Transport and Highways, have formulated strategies for the elderly. The strategies include reservation of seats in public transport, monetary concessions in rail travel, separate ticket counters in railway station, income tax exemption, separate queue in public health facilities, provision for geriatric clinics and special vigilance cells to track elder abuse and crime. In addition, the National Program for the Health Care of the Elderly (2010–11) needs special attention for its proposal to address affordable, high-quality, community-based health care for all aged. Besides, specific programs are designed for elderly subgroups who are poor, homeless, ill and abandoned. These include pension schemes (Indira Gandhi National Old Age Pension Scheme under the National Social Assistance Program), and health insurance policies (Rashtriya Swastha BimaYojna) for senior citizens living below the poverty line; free food grain distribution to poor elderly not covered by any pension scheme (Annapurna Yojna implemented by Ministry of Rural Development and Food and Civil Supplies in 1999); legal rights for maintenance from children (Maintenance and Welfare of Parents and Senior Citizens Act, 2007, developed by Ministry of Law and Justice); provision of old-age homes, respite care homes, continuous care homes, and mobile Medicare units, especially for women who are homeless, destitute and widowed (Integrated Program for Older Persons, developed by the Ministry of Social justice and Empowerment in 1992and was subsequently revised in 2008 and in 2016); day care centers; physiotherapy and mental health care for elderly in need of special care and state-assisted hospice and public charity for the chronically ill elderly who are deprived of family (National Policy on Older Persons 1999 and National Policy for the Senior Citizen in 2011). However, none of the above programs and policies sufficiently meets the needs of the elderly. Most are not fully operational; many lack proper monitoring and supervision.

82  The rhetoric of dying in home Meanings of home for those living with aging and dying There is a need for greater evidence on the often-reported older people’s frustration of not being able to live and die according to their self-created scripts. Do all older people find their own script within family homes in India or does embodiment of identity with home provide an important reason for further social isolation of the dying elderly? Do the dying consider home as a place wherein they can seek their cultural and spiritual needs before they exit? What are the implications of gendered conflicts on the dying elderly? Finally, would dying at home carry the same meaning for these elderly who already find it distressing to be at home? What does independence and autonomy mean in end-of-life when daily schedules, activities, social contacts and information are regulated by others? Not much is known about these issues; however, it may be assumed that the already patriarchal gender arrangement in India is likely to make aging and dying a difficult experience for elderly women. Also, given the relational settings dominated by persistent conflict with mother-in-law and daughter-in-law, even perceptions of care are likely to be negative. In a study in Dharwad, in comparison to 90 percent of the sample who said that treatment and care accorded to them was cordial, only 41 percent of the females said so. In yet another study conducted in Dharwad, a comparison of the subjective well-being among two groups of elderly, institutionalized and noninstitutionalized, showed that noninstitutionalized elderly were more dissatisfied with their lives than those who were institutionalized (Patil, Itagi, Khadi and Havaldar, 2013) In those cases where the elderly wish to dissociate themselves from home, do they have greater latitude to exercise their choice and maximize their capacity to live autonomously despite multiple age-related morbidities? And are there sufficient health and financial provisions to support their decisions. Care for many elderly in India is often a matter of joint responsibility for the children. In the name of filial piety, aged parents are virtually tossed between children’s residences, often far away from one another. Personal anecdotes show how they become a victim of such joint responsibility, often having to pack up their belongings to move to the next residence of the offspring. Thus, frail octogenarians are often reduced to a bundle of bones in an unending sojourn. A Bengali phrase ‘bhagermaa ganga paynaa’ (a mother who is jointly owned by many sons finds none to offer holy water of the Ganges on her deathbed) speaks of the difficulty faced by such aged widows who receive home care in multiple settings. Deficient role of the state in end-of-life care The National Program for the Health Care of the Elderly (NPHCE) launched by the Ministry of Health and Family Welfare in 2010–11 does speak eloquently on the need for a new ‘architecture of ageing’ by recasting health facilities at different levels but misses any special reference to institutional Long Term Care arrangements or the need to consider family-home as a distinct care setting. Lack of institutional support for the dying elderly especially impacts women, given

The rhetoric of dying in home  83 the rising evidence of the demographic feminization of the aged. As per the 2011 census, women aged above 60 years represent 5.7 percent of the total population in comparison to men who represent only 5 percent. Inverse to the child sex-ratio that is biased toward males, elderly sex-ratio is in favor of the females. There are 1,022 elderly women for every 1,000 men. Problems of destitution and isolation are quite prevalent. Around 280,000 of rural elderly women stay alone, whereas 802,000 elderly live alone in urban centers. Absence of alternative arrangements renders home as the only available option for many, rather than one of preferred choice. Considered from this standpoint, normative expectations of home care seem merely as measures to absolve the State of its duty toward such population. In 2007, the Union Cabinet approved a new law, the Maintenance and Welfare of Parents and Senior Citizens Bill 2007, which includes provisions to protect the country’s senior citizens, and places a legal obligation on children and relatives, whether residing in India or abroad, to maintain them by providing sufficient maintenance. According to the proposed law, any senior citizen who is unable to maintain himself on his own earnings or property shall have the right to apply to a Maintenance Tribunal for a monthly allowance from his child/relative. The Maintenance Tribunal may also, on its own, initiate the process for maintenance. It is proposed that state governments set the monthly maintenance allowance, which is capped at a maximum of Rs 10,000 per month. According to the Ministry of Law and Justice, 2007, punishment for not paying the required monthly allowance is proposed at Rs 5,000 or up to three months imprisonment, or both. In view of the increasing number of cases of harassment of elderly citizens, the bill has a provision for a tribunal to hear within 90 days senior citizens’ complaints against their children or any external agency about issues of neglect, physical injury, mental cruelty, separation from families and their restoration. Unfortunately, a widescaled survey amongst 56,000 elderly people conducted by HelpAge India across 20 cities found that very few elderly knew about the bill and still lesser about the tribunal (TNN, 2012). The bill also proposes to provide old-age homes in every district – a feature that may somewhat compensate for measly responsibility of the state in elder care. Recently, private initiatives in Senior Homes and Retirement communities have come up.6 However, concept of special housing for the elderly still carries a social stigma in the country. According to one estimate, only 0.0001 percent of the elderly reside in these senior housing projects whereas it is 12 percent in the U.S. and 4 percent in Australia. Many of these housings provide age-friendly architecture like corridors with handrails and anti-skid floors. They even have networks with doctors and ambulance to provide round-the-clock service and emergency buttons, amenities that shoot the prices up. However, living in these apartments is not easy for many. There are accounts of couples who feel overly depressed living with moribund neighbors complaining about health problems (Business Today, 2013). Among those who continue to stay in family homes, there are many single elderly who have none to care for. Data show that while 94 percent of the aged have children, only 33 to 34 percent live with them and rural-urban differences are negligible in this regard (Ministry of Law and Justice, 2011). All this points to

84  The rhetoric of dying in home new challenges in the organization of home-care services particularly for women, many of whom live alone in old age as a result of widowhood, poverty and ill health. How do these women die? There is also lack of information for the section of elderly for whom the street is the only ‘home.’ As per 2011 census, 0.14 percent of India or 1.7 million people are homeless. While there has been a 28 percent decline reported from rural India since the last census, a 20 percent increase in homeless people living in the cities has been reported. Of the top five metros, Mumbai, Kolkata and Delhi have a major problem of homelessness (Kumuda, 2014). Many of the homeless suffer from serious and persistent mental illness (SPMI) but are mostly undiagnosed and beyond the purview of government programs and policies. Prasad (2011) in her dissertation on adult street dwellers in Delhi found that assessing health care is one of the major challenges for the homeless. While many seek care in nearby government facilities, absence of permanent residential address and lack of community trust due to social stigmatizing status causes delay in receiving care. They shunt from one organization to another for days together in search of medical care. While local healers, religious charities and few philanthropic services in the vicinity provide care in case of minor ailments, little is known of care provision for people who encounter serious problems like cancer, mental illnesses and burns and fractures arising out of street scuffle. A  high proportion of homeless people suffer from serious respiratory ailments, including tuberculosis, acute and chronic infections, skin diseases and diarrheal diseases (HIGH, 2003). While Mander (2008) finds that chronic poverty remains the main cause of homelessness, Prasad (2011) suggests that mental illness, mental retardation and stigmatizing illnesses are also contributing factors that precipitate homelessness. Persisting social inequality in end-of-life care provides compelling evidence to carve out a larger community role for such elderly living and dying alone under varying levels of deprivation. Paltry care provisions for dying at home There is very little research on the provisions needed for dying at home in India. As discussed earlier, evidence indicates considerable care deficit even in agingat-home although no precise estimates are available on what the deficit means for different aging groups, of different social classes and with varied living arrangements. For instance, a retired corporate and professional elite who has had access to consumer-directed care throughout his life would require professionally trained people to harmonize health care with assistance in living. Others who are financially compromised might desperately require, in addition to informal care workers, social security and public support. In other words, the dying elderly comprise a highly heterogeneous group in terms of their needs. Urban and rural variations in care needs are no less important but poorly documented in access and barriers to end-of-life care research. In rural areas that witness heavy outmigration of the young and able-bodied, home care may be a poor substitute for institutional care of the dying. Evidence indicates that there is dearth of health infrastructure and financial support needed to enable people to die at home. A weak or nearly absent

The rhetoric of dying in home  85 palliative network fails to come to the rescue of families supporting elderly dying at home. This combines with the fact that the entire health system is uncoordinated and fails to officially recognize family homes as part of the continuum of health care. As a consequence, the carers are left helpless with no single named professional point of contact in case of emergencies. The gradual decline of the role of the GPs further accentuates the problems. This is best illustrated in the case of West Bengal, one of the rapidly aging states in India, where the general health infrastructure is deficient (Alam, Majumder, Chakravarty and Yadav, 2014; Arokiasamy, Parasuraman and Luhngdim, 2013) and palliative network is underdeveloped. The state has so far not evolved a policy on palliation nor implemented the recent amendment to narcotics and drug policy with respect to availability of morphine. None of the government hospitals have yet worked out a home-based palliative program. As a result, many homes supporting the dying patients are found to be in a chaotic condition. An ongoing project supported by the Ministry of Human Resource Development, Government of India, shows private homes in the state capital of Kolkata to be architecturally inadequate. Caring at home is deeply gendered, and caregivers are overburdened in the absence of supportive networks. But despite having wellnetworked palliative care program, home dying in Kerala is no less traumatic. A survey of two-gram panchayats in resource-stricken areas raised serious questions on family home as the locus of aging and dying for marginal populations. A mere clinical-oriented palliative program without service-mix could not ensure dignity in aging and dying at home for those without adequate shelter (Jayalakshmi, Chopra Chatterjee and Chatterjee, 2016). Although modest progress has been made in the field of telemedicine and assisted-living technologies, they are still unable to address the pathos of dying in homes for marginal population. Many otherwise well-off Indian homes are also not technologically networked with services, which have made care for dying at home possible in the West. Homes are rarely assessed for their ability to care for the dying post-discharge from hospitals. This was clearly illustrated in the case of a retired elderly lady who was living alone after an active life as a social worker. She was diagnosed with ovarian cancer and cardiac problems and had to undergo multiple surgeries. Having led a fiercely independent existence, she had none to help her on her discharge to home. In fact, there was no help around for the three years that she survived after her surgery; she kept requesting people for a trained domestic worker who could at least help her prepare the food and oil and comb her hair. Such cases provide ample ground for appreciating the urgent need for a strong end-of-life care strategy, lacking which dying at home clearly presents complexities not experienced in Western countries. The social worker died lonely and uncared for in the end. A survey commissioned by HelpAge India in 2008 has three touching stories to share about the pathos of dying at home when alone. One narrates a case from Delhi when neighbors complained about a foul smell emanating from an apartment occupied by a very elderly couple in their mid-eighties. The couple lived alone after their only son settled in London. On breaking through the locked doors,

86  The rhetoric of dying in home the neighbors found that the frail couple had already died many days earlier. There was no food; the couple possibly died of starvation. The only edible substance found in the apartment was salt. The second story is also about an elderly couple who was murdered, and their bodies kept decaying for 11 days. The neighbors hardly cared to inquire about the couple, even though they were not seen for a long time. The couple did not interact much and had no domestic help. It was a washer man who grew suspicious after noticing that the lights in the couple’s apartment were continually lit for days together. The last story is all the more tragic. It was one morning when a counselor at the HelpAge India office picked up the phone to find a rather distraught old woman at the other end. She did not disclose her identity or her address or any other details. All she could manage to say amidst sobs was that she had dialed at random just to hear a voice! With a bit of coaxing, she revealed she lived alone; her children had moved away and lived independent lives, leaving her to her own devices. She lived in a community where the neighbors, too, kept to themselves. She was virtually a prisoner within her home. For days together, her only contact with the outside world was the voice at the other end of the line! As mentioned, promoting home care in advanced countries has necessitated the introduction of multilevel structural changes so as to cause least disturbance to the carers. There is now increasing realization that physical characteristics of care settings influence the quality of care and its delivery. Some physical environments are particularly responsive to end-of-life care. By contrast, locational problems involving the elderly and the carers, deficits in home arrangement and unhygienic home surroundings make mockery of dying at home in both middle class and underprivileged locations of India. This was especially illustrated while accompanying a home care team at Tata Medical Hospital. The person being visited was an elderly cancer patient. Few members of the team could muster enough courage to climb the makeshift, rickety staircase leading to his tiny, oneroom accommodation in Bombay’s slum settlement. The single-room housed the patient, other young members, the kitchen and the store. It was evident that keeping a patient with a foul-smelling fungating wound would have further compromised the quality of life of an otherwise famished family. When the team visited the patient, other members who were day laborers had already left for work. The patient was at ‘home’ but without the proverbial care attributed to home setting. It could hardly maximize his independence, encourage social interaction and enable self-expression; in other words, serve as a therapeutic element in end-of-life care. Probably, a quick death would have ensured greater dignity than the sporadic help provided by the palliative team, and at least some of team members were honest to admit that. In such cases, family support programs actually need to be harmonized with poverty prevention program to make any sense of home care. The dismissed caregivers Unlike the developed countries that are supporting and nurturing caregivers at home, the Indian government is yet to recognize the importance of caregivers.

The rhetoric of dying in home 87 So far, a national assessment of burden of caregiving has not been attempted, and this prevents an understanding of the reality of aged care and the possible role that the state needs to play in the future. Does caregiving lead to a feeling of freedom or entrapment for the caregivers under poor levels of state social support? As mentioned earlier, home care has so far not been understood as part of the continuum of care system. Caring for dying elderly with diseases like dementia may be especially challenging for the caregivers. In India, over 50 percent of people with dementia require caregivers’ support. However, as indicated in the Prince, Albanese, Guerchet and Prina (2014), caring for such patients is not easy. Caring is a full-time job – an average of around 8 hours per day for a relative with moderate to severe dementia. Forty to 75 percent caregivers looking after such patients develop significant psychological illnesses, and 15 to 32 percent develop clinically diagnosable major depression. Given the fact that much of caregiving in India is provided by women, home care may emerge to be truly oppressive for them (Prasad and Rani, 2007) and result in overburdening of the already overworked women, particularly in rural communities (Kulkarni et al., 2014; Prakash, 1999;Jamuna, 1997). Such estimates of caregiver burden have to be taken seriously and provide scope for considerable social and political intervention. The following case is of a doctoral student in the department where Chopra Chatterjee works. The student’s situation illustrates the stresses and strain in urban India that accrue to the entire family for want of adequate Long Term Care arrangements and lack of end-of-life care strategy to support home dying. The story also illustrates the forces of social transformation arising from the demands of caregiving, the changes that accrue in the space of home environment and how these are experienced by the family members. Caring needs: spatial and relational transformations A new doctoral candidate in her fifties had joined the department. She was already a college teacher but did not have a doctoral degree, which had obviously come in the way of her career advancement. However, having registered for the doctoral program, she was unable to complete her work on time despite intellectual maturity and academic competence. Inviting her to a dinner of simple food cooked in her presence, we tried to probe the reason. She ate as one starved of a healthy meal and, restraining her tears, spoke about the stresses and strain at home. Academically speaking – caregiver’s burden and burnout syndrome. Her father, over 90 years of age, was ailing since many years. Lately, he had developed mental problems – memory loss and depression. Her mother had also developed serious cardiac problems. To take care of the elderly parents, she shifted them to her home in the campus. But meanwhile, her fatherin-law was in trouble with age-related problems. So to make room for all the three sick elderly patients, she quit the residential college accommodation and moved along with her husband and two grown children to their spacious ancestral house. Her father required oxygen and ventilator support, and

88  The rhetoric of dying in home his room was equipped with all medical technologies resembling a nursing home. Professional help was arranged for all three parents: six nurses on two shifts. But the nurses that she recruited were not highly professional and trained; it was obvious they were working on low pay with poor motivation. They too had to be monitored, accommodated and provided food. A cook and an errand boy were recruited, in turn. As the couple ran short of finances and manpower, the nuclear family had to be dissolved; her brother also decided to join them in the ancestral house with his family of four. He pooled his resources while his wife (a homemaker) volunteered to supervise the entire team when the employed members went to work. But obviously such large structural changes brought their own problems. Kids suffered and tempers ran high as each family member tried to adjust to the demands of an altered living and a radically transformed home environment resembling a mini-hospital. ‘We have not laughed for months, nor slept well for days, or taken a meal together,’ she said. ‘But why oxygen and ventilator support for years?’ I asked rather sheepishly. ‘My mother cannot accept the idea of being widowed.’ ‘And what about your father in-law?’ ‘My husband is too attached to his father.’ Is this a problem of not ‘letting go’ of life – the lost ‘art of dying in India’? The narrative shows the nature of organizational changes resulting from caring needs and its potential to tilt the burden of caregiving especially to women carers. Do the positive meanings of home sustain for older persons and their caregivers when the home undergoes changes to support terminal care? Are the associations of home obscured or changed by the increasing medicalization of the home environment during the dying process? What happens when the home is transformed into a mini-intensive care unit with the import of medical equipment and personnel? The above narrative suggests that home care may change the very meaning of home involving cherished values, such as privacy, close relationships, comfort and dignity. As mentioned earlier, what is often overlooked in the discourse of moral responsibility to care is the fact that caregivers are not always able-bodied and young in body and mind. There is very little scope in caregiving discourse to examine the complexities arising in situations where caregivers themselves are old, ill, suffer from functional disability and financial constraints. The following case illustrates the interplay of such forces in urban Kolkata. Who cares for the (old and poor) caregiver? Kampa’s husband was dying for the last 10 years. She did not know what he was dying of. He was around 80 years. He forgot what he ate, kept asking for

The rhetoric of dying in home  89 more, soiled his food after eating and yet asked for more in the most abusive, filthiest language. Physically too he was stinking all the time but refused to have a bath. At times, Kampa forced a bucket of water over him. His abuses became louder and nastier then. She dismissed them just as she ignored the growling and barking of the smelly stray dogs domesticated as pets by her nephew. She threw buckets of water on them to keep them clean. At times, Kampa wanted to be left alone. But she could not, for she was a mere cook for a measly 2,000 rupees a month. She had two small rooms – one of which she shared with her husband despite the stink and the abuses. The other room was occupied by her son and his wife and two children. They have a term for it – overcrowding. It was not only the physical space that was overcrowded; the mental space was equally cluttered with hate abuses and disgust for the life she was leading with her husband and an insensitive daughter-in-law. She was around 60 and desperately clamoring for some rest. Actually, it was difficult to trace her age – she could have been around 70 too. She had a plump, matronly figure and dark hair that was always oiled and tightly put in a bun. ‘When I joined for work as an Aya, I had already reached menopause,’ she said in an effort to provide a biological marker. The infant was now a handsome lad of 21  years! When he was 13, she switched her role from Aya to a cook to avoid unemployment. She did not change her employers, though. But the problem with being a cook is that while the rest of the family members for whom she cooked for all these years were now all over 65 years of age, took rest and remained indoors, they hardly forsook their gustatory pleasures. She continued to toil, or at least was expected to toil, like a 20-yearold. Months and years rolled by with the same grinding routine – getting up from bed, cleaning the soiled clothes of her husband, drawing water from the well and taking a bus, in fact, three of them to save cost to reach her place of work. She rarely got any appreciation at her workplace. But one day, she fell too sick to move. Instead of cleaning the soiled clothes of her husband, she found her own bladder leaking. She had to be hospitalized for a gall bladder surgery, and her sick husband was left to the mercy of her daughter-in-law. The above case does indeed raise serious issues about the need for Long Term Care strategies for the underprivileged working in the unorganized sector. Many paid caregivers for the wealthy have a double burden of providing care to their own sick and dying family members at home. The excessive burden of caregiving has a bearing on their health and socioeconomic condition. Thus, while the aged employers of Kampa, who are comparatively well-off, can be relieved after assigning Kampa their household work, Kampa herself cannot afford to spare few moments to pay attention to her own needs due to her dying husband at home. What if Kampa’s own financial mechanisms weaken further? What if she is rendered ill like her husband? Then how would she handle her life amidst the deteriorating relationship with her son and daughter-in-law who could hardly be

90  The rhetoric of dying in home considered as a family in need? Presently, there are no government program to abnegate such disparities. As a result, poor women are in a serious disadvantageous position. Another feature to note in the case study is that many of these women like Kampa have no specialized training to nurse people who are ailing and dying. Since there are poor provisions to develop their capacity as caregivers, they continue to be tied to meager paybands. Overlooked needs of paid caregivers What makes dying possible at home in India despite absence of a formal homesupport program is the availability of good paid care and a designated caregiver. However, little government investment has been made in recruitment, training and supervision of health and personal care assistants and domiciliary care staff. Scanty workforce development activities and poor application of the discipline of social work in home care has resulted in considerable care deficit for the dying and the carers. Traditionally, social workers have served an important role in facilitating communication at the end-of-life and resolving ethical dilemmas associated with end-of-life treatment. Unfortunately, social work curriculum in India has failed to create front-line service providers despite the field’s enormous potential to contribute to end-of-life care (Popli, 2010). Recently, more than 300 institutes have started social work specializations in geriatric care. However, their relevance in facilitating home care for the elderly and empowering the care workers at home is not yet known. Most domiciliary staff lack relevant skills and knowledge to support patients and family carers and are not well qualified for providing good responsive care to the elderly. In large cities where centralized hiring services are introduced, they rarely ensure that the clients receive familiar staff in terms of continuity of care. But looked at from the perspective of women in care jobs, however ill-trained they may be, the conditions of employment are equally oppressive. Scholars concerned with recognizing the ‘informal sector’ of welfare and the need to give it greater role in the development of social policies have drawn attention to the plight of such women. Ungerson (2004) has shown how the reorganization of care work has drawn women to work in care jobs where the hours and skills that are demanded fit with existing domestic responsibilities. Most of these jobs do not offer women the necessary benefits to provide for security in their own life. In many Indian hospitals, these women, known as ayas and mashis, also work as hospital domestics during night shifts – a feature found in many poor countries that suffer from staffing problems. Their caring practices reconfigure the domestic space within the hospital and bring divergent nursing practices, very often poor in quality. Overtired from the day’s work, many merely sleep the night off, leaving the patients complaining and grumbling, but are nevertheless tolerated often as psychological source of comfort. In family homes, they are a poor yet important source of caregiving for those who cannot appoint professionally trained nurses. How would future old age look for the ayas and the mashis who would not have the resources to pay for their own future care needs? There is no accurate estimate

The rhetoric of dying in home  91 of the number of such informal carers and the quality of life they lead. But clearly a deficit in terms of commitment and training exists, and it appears that the economy of care locks its lower-paid employees, mostly women, into a marginalized role. Despite oppressive conditions, many such women also form part of the global care chain, providing care for individuals and families in richer countries. It is in this sense that researchers have suggested that the ‘costs of care’ are not just a question of the changing relationship between the state, market, family and community but of geopolitical inequalities between states affecting individuals in gendered and racialized ways. In this sense, the contemporary social processes of care are multirelational and have implications for a political ethics of care.

New initiatives in home care New beginnings in home care are being made amidst glaring ambiguities and complexities. Drawing clues from Western experiments, hospital set-ups have begun to intrude into home ambience with the promise of providing skilled care at home by doctors, nurses and physiotherapists. However, what is provided only includes technical-medical help; most service providers carefully avoid inputs like meals-on-wheels either because of their inability to do so or to retain the traditional practice of preparing food at home. It remains to be seen how traditional caring practices oriented to need-based support to the elderly make way to taskbased activities. One such initiative is the Health Care at Home India (HCAH), a joint venture of the Burman family, promoters of Dabur, the consumer goods major and Gareth and Charles Walsh, founders of the U.K.-based Healthcare at Home. The company seeks to offer health care in oncology and postoperative and palliative care while ensuring that right kind of treatment is executed to perfection at home. In other words, it complements the services of hospitals or clinics. It even claims to set up an ICU arrangement within 24–36 hours and other noncritical care services within 2 hours. Nearly 70 percent of its business comes from ICUs-at-home, chemotherapy, physiotherapy and postoperative care at home. Portea is an in-home health care service that mainly benefits elderly, disabled and bedridden persons. Its services include doctor visits, post-hospital care, laboratory tests, nursing, attendants for sick and disabled and physiotherapy. While nursing care includes postsurgical care, fitting tracheostomy, urine catheterization, suture removal, wound care, injections, oxygen administration, IV infusion and more, trained attendants are delegated to administer oral medications, oxygen and stoma care, manage feeding tubes, assist in ambulation, monitor vitals of patients and provide personal grooming. Besides, Portea also offers a wide range of medical equipment on rent, like beds and mattresses and products for cardiac care and respiration. While nurses and trained attendants are hired after rigorous screening and orientation, junior doctors are supervised by specialist physicians. Started in 2012, it now has centers in 18 major cities of the country, including Delhi, Mumbai, Kolkata, Chandigarh, Goa, Jaipur, Ahmedabad and Hyderabad. It has relieved many working people caring for their elderly parents at home.

92  The rhetoric of dying in home Another effort at bringing professional care for elderly at home is provided by Tribeca Care in Kolkata, the city’s first professionally managed, one-stop health care platform at home. Founded by five NRI friends who have come together to address a need to look after their parents while managing a career, Tribeca Care offers a range of geriatric care services to cater to both physical and emotional well-being of patients and short-term home care for those recovering from surgeries or suffering from chronic health conditions. It is conceived as a one-stop solution to health care at home. The Tribeca patient management system includes trained care workers, homecare devices, pharmacy products, therapy support and psychological care. Still in its infancy, the caregivers are likely to be professionally trained in dementia services, physiotherapy and maintaining health charts by professionals from abroad. This would create a new cadre of skilled Ayas equipped with good soft skills, including nonverbal communication. Tribeca Care hopes to assign a relationship manager who would ensure through home-assessment trips that service standards are maintained. It also intends to tie up with big hospitals and is already catering to around 80 patients. In Kolkata, the organization Deep Prabeen Porisheba provides multiple, needbased services to elderly at their doorstep. The services range from simple ones like providing companionship to specialized postoperative services. The services listed include companionship in reading the newspaper or playing chess; assistance with simple gadgets like laptop, mobiles and e-mail; guidance during morning walk and yoga; dealing with banks and post offices; managing appointments with doctors, relatives, friends and counseling; organizing social gatherings and picnics; visiting religious places; car booking; and providing handyman services in forms of mending leaked pipes, changing lights and other maintenance jobs. The organization has linked up with hospitals to provide emergency services, arranging doctors’ visits for general health checkup, providing advice on nutrition, special postoperative care, physiotherapy and so on. Services are offered through sahayaks who are formally trained. The package of services, though extensive, indirectly illustrates how families may be falling short of care for the elderly. However promising such models might appear, they are urban-centric in nature and based on pay-in-service mode. Moreover, the anchoring of hospital set-up in home excludes large number of elderly people because of architectural incongruence of their homes to end-of-life care. In India, 3.6 to 4 percent of the population reside in houses with more than six rooms. Many elderly who live alone might fall into this category, which adds to their sense of helplessness. On the other hand, there are 17.5 percent of population who share one room among nine members (Census of India, 2001), and this group is likely to face serious problems in home care. Most of these home care agencies run services without any effective guideline by the government. However, in order to strengthen home care for elderly, an effective guideline needs to be developed that can regulate the quality of services as well as avoid excessive bureaucratization. There are reports of a heavy bureaucratic structure, managed by low-educated nurses performing fragmented services even in many well-developed health systems abroad. In the Netherlands, often a

The rhetoric of dying in home  93 single patient is looked after by no less than 30 nurses in a month with nobody having the ‘total picture’ of the patient! Operational guidelines for home care in India while standardizing services also need to have an implicit understanding that each home is unique in its structure, orientation and practices. While a centralized control might improve structural appropriateness, it may not result in good death in terms of spiritual fulfillment, death preparedness, oneness with others and other important criteria for quality death and dying.7 One, therefore, needs to promote home care with the caveat that the purpose of home care during end-of-life is to scale down medicalized treatment, carefully avoiding their transformation into hospitals and nursing homes. When homes turn into hospitals, the fractures in familial relationships and mental peace may be deep and devastating.

Notes 1 The concept of ‘ageing-in-place’ has been popularized since the 1990s. In 1994, OECD countries agreed on taking measures to enable older persons to continue living in their own homes, and where this is not possible, they should be enabled to live in a sheltered and supportive environment that is as close to their community as possible in both the social and geographical sense (OECD, 1994). Finding that conventional homes do not always prove to be convenient for caregiving to elderly, OECD in 2003 agreed that living with dignity is more important criterion for ‘ageing in place’ than the location. Many elderly of developed countries prefer to live independently in residences that suit their growing age and physical infirmities. These are equipped with in-built assistive technologies and barrier-free architecture. 2 In a paper that seeks to explore the interaction of home-dwelling elderly with physical, social and symbolic environment, it was found that pleasant weather, adequate light and feeling of safety has a great bearing on the morality and psyche of the elderly. Places where spiritual and religious exercises can be done are considered as safe places by many elderly (Elo, Saarnio and Isola, 2011; Eells, 2004). 3 Some important tools and measurements include: Carer Assessment of Satisfaction Index (Ref: www.fas.nus.edu.sg/rg/doc/family/family_wp2.pdf); Modified caregiver strain index (MCSI)(http://consultgerirn.org/uploads/File/trythis/try_this_14.pdf);Caregiver Burden Assessment (CBA) (www.nysaaaa.org/Caregiver_Forum/CaregiverForumErieHandout09.pdf);Zarit Burden Interview (www.aafp.org/afp/20001215/2613.html); Carers’Assessment of Managing Index (CAMI) (www.fas.nus.edu.sg/rg/doc/family/ family_wp2.pdf). 4 The Songjiang Shanghai CCRC (Continuing Care Retirement Community) Project, currently renamed as Shen Yuan (Shanghai Garden), is one out of several other senior citizen living projects in China. The community has different types of housing facilities to enable individuals to choose one that suits their lifestyle, personal and medical needs. There is, however, an option for one to change residential type as the perceived needs for caregiving change. The project also encourages community interaction from the surrounding Songjiang area with the residents in its open public spaces. The project provides post retirement lifestyle care, health care, education and other comprehensive services in a uniquely designed environment that secures strong bonding with nature. Besides landscaped walking paths and recreation areas, there are hospital and health care facilities, professional care units, memory disorder units, assisted care units and shopping, dining and entertainment amenities, including a health club with a swimming pool. 5 A commissioned study of HelpAge India ‘Elder Abuse and Crime in India’ in 2011, shows that there is a considerable inter-city variation in elderly abuse. Conducted in nine cities of India  – Delhi, Mumbai, Ahmadabad, Kolkata, Bhopal, Chennai, Patna,

94  The rhetoric of dying in home Hyderabad and Bangalore – data show elder abuse is more rampant in Bangalore (44 percentage), Hyderabad (38 percentage), Bhopal (30 percentage) and Kolkata (23 percentage) than elsewhere. This report also finds that there is a socioeconomic difference in forms of abuse. Verbal abuse is most common among the poor, whereas neglect is high among the richer (Sigma Research and Consulting Pvt. Ltd., 2011). Also, people who are relatively rich and aged 70 years experience more abuse than younger cohorts, which confirms that dying is not easy at home for many. 6 Presently, most elderly Non-Residential Indian couples who return to India seek these types of apartments. Only a handful of companies have invested in the senior housing venture of which Paranjape Schemes Ltd., Max India Ltd. backed by Goldman Sachs Group Inc., LIC Housing Finance Ltd., The Covai Group, Tata Housing Development Co Ltd. and Ashiana Housing Ltd. are important. These housing projects have come up in Mumbai, Delhi and Bangalore. Real estate consultant Jones Lang LaSalle estimates current annual demand for senior homes across 135 Indian cities at 312,000, far outstripping supply of 10,000 to 15,000 new homes now in the pipeline. These housing projects are solely meant for urban, middle and upper-income buyers who can afford to pay between 3 million and 6 million rupees ($50,200 and $100,400) for an apartment, which is cheap by Western standards but beyond the reach of the average Indian. Max India is building a project in the north Indian hill resort town of Dehradun that aims higher, with villas priced above 10 million rupees. These houses provide luxury and security, which ordinary houses fail to provide. The Athashri retirement community in Pune offers Western-style amenities, such as a clubhouse, gym, library and pool to Indian elderly. The unit has a temple built within the residential area to let residents offer homage to their deities. The 180unit retirement community is located much away from the city bustle to overlook open fields, hills and lush gardens. Another initiative is the Association of Senior Living India (ASLI), creators of Senior Homes under UTSAV (www.asli.org.in/pageseniorlivingindia.html#). 7 As per Curtis and his team (2002), there are 6 domains and 31 parameters to ascertain quality death and dying. They are (a) symptoms and personal control, (b) preparation for death, (c) moments of death, (d) family time, (e) treatment preference and (f) whole person concern.

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5 Is palliative care the answer to care for the dying elderly in India?

As a distinct approach to care for terminal patients, palliative care in the West has been quite cancer-focused, primarily because a scientific stage-wise prognosis of the disease makes delivery of end-of-life care easier and cost effective.1 But given the fact that an overwhelming majority of deaths now take place among people above 60 years of age who suffer from multiple morbidities, there is globally a felt need for palliative care for geriatric population (Futureage, 2011; Hall, Petkova, Tsourus, Costantini and Higginson, 2011; Davies and Higginson, 2004; United Nations, 2002,1983). A report compiled from 28 European Union countries (2004 to 2010) has shown that more number of elderly people die from ischemic heart, cerebrovascular and respiratory diseases than cancer of any type (Eurostat, 2016). The National Institute on Ageing (2011) confirms that this phenomenon is relevant not only in Europe but has global significance too. There are also numerous examples in the literature to advocate the need to extend the end-of-life care support that palliative care offers to the aging population (cf. Brazil, 2012). Unfortunately, some studies like the one conducted in Nova Scotia find that people aged above 60 years were referred in less numbers to palliative centers than those below 60  years, thereby, showing fall in palliative-center admission rate with increase of age (Burge, Johnston, Lawson, Dewar and Cumings, 2002). Burt and Rayne (2006) also arrived at the same conclusion after conducting a systemic research that identified total 14 literatures published between 1966 and 2005. They summarily conclude that referral to specialized palliative care for elderly cancer patients who are aged 65 or above are significantly low. However, most researchers agree that providing palliation in end-of-life for elderly is likely to be difficult. The cumulative impact of a long trajectory of dying with chronic and multiple diseases may lead to greater impairment and need for care – even episodic acute care. Studies suggest that dying trajectories of the elderly now include an average of two or more years of disability severe enough to require assistance with activities of daily living. Care for such conditions need high degree of preparedness of the health care system, involving coordinated care management and health surveillance by reinvigorating the primary health care system. Pain and symptom management at the primary level, availability of trained nurses and highly coordinated health care planning may be required to reach out to old people suffering from complex diseases like dementia, heart

Palliative care  99 failure and stroke. Neurological degeneration in later life also throws extraordinary challenges on account of complex trajectory and manifestation of symptoms  – muscular dystrophies and sudden loss of senses and function. Efficient management may require non-pharmacological approaches unknown to many physicians who willy-nilly resort to unnecessary invasive treatments. So far, there is little evidence to support the idea that practices developed mainly in relation to cancer can be successfully translated into feasible practices for old patients with a long trajectory of dying from diverse multisystem pathology (Boland, Martin, Wells and Ross, 2013; Falon and Foley, 2012; Department of Health, 2012). In a recent study in Europe, it is found that only 20 percent of the patients suffering from noncancerous diseases receive palliative care (Zheng et al., 2013). Researchers have subsequently identified that there is a marked paucity in research related to non-pain symptoms of elderly patients arising at advanced stage of illness like anxiety, anorexia-cachexia and cognitive impairment. Instead, there is more focus on ailments arising from specific interventions like chemotherapy-induced nausea (Boland and Johnson, 2013; Boland et al., 2013; Combs, Kuggler and Kutner, 2013; Fallon and Foley, 2012). Further, older people have greater risk of adverse drug reactions, and iatrogenic illness and problems of acute illness may be superimposed on physical or mental impairment, economic hardship and social isolation. Thus, the need for palliation, at least in the terminal stage, cannot be dismissed. In fact, the Japanese Geriatric Society for the Terminal Care for the Elderly issued a position paper that suggested that terminal care be regarded as a sub-specialty made up mainly of palliative medicine and guided by patient’s values and preferences (Uemura, 2000). The extension of palliative principles to dying elderly may be best considered as a challenge rather than an impediment. In fact, in the last 10 years or so, palliative care has been trying to extend its caring zone through the collaboration and combined expertise of the fields of gerontology and geriatric care, just as other disciplines have also explored aligning themselves to palliative care. It is claimed that gerontological nursing has common and parallel grounds with palliative care – humanistic person-centered care and multidisciplinary knowledge backup – and many other facilitating-care processes that are consistent with the patient’s needs. In problems related to dementia care, stroke rehabilitation and falls treatment, there is increasingly a felt need for greater exchange of knowledge, skills and expertise. But mere transfer of palliative care principles to aged care don’t work because specific needs of the cohort have to be kept in mind. Unfortunately, palliative care for the geriatric patients has not been thought as distinct from general palliative care, even in international guidelines like the one provided by WHO (2004). One serious challenge that emanates from WHO’s definition of palliative care is that it still continues to hover around a disease paradigm, more specifically ‘life threatening diseases,’ whereas many elderly die naturally and not from any terminal diseases. An attempt to overcome this problem and embed palliative care principles in the language and practice of older persons and outside the restricted biomedical paradigm got a boost with Allan Kellehear’s (2005,1999) systematic attempt to

100  Palliative care look at palliative care through the public health lens. Drawing attention to dominance of clinical priorities, he wished to redress this imbalance by bringing in social science and public health inputs, spiritual aspect of care and early stage care for those with life-threatening illnesses. Singer and Bowman (2002) too had argued in favour of Public Health Palliative Care (also known as Health Promoting Palliative Care or HPPC).2 Rumbold (2011) finds the public health approach exemplified by Health Promoting Palliative Care to be especially effective in improving existing services for the aged, dying people. Building up his commentary, he shows how historically Health Promotion and Palliative Care have not been dialogue partners in Western countries during the 1970s and for much of the 1980s when palliative care was often equated with hospice care. But during the 1990s when most Western health services moved to incorporate palliative care as one of the services delivered by the public health systems, the application of palliative care philosophy and strategies to aged care contexts became stronger. Tracing the routes in different countries, he finds great variations. Australia published Guidelines for a Palliative Approach in Residential Aged Care (Dept. of Health and Ageing, 2004) following a two-year consultation process. Primary care providers drew upon their own supplementary training and experience in palliative care to provide end-of-life care informed palliative principles. Canada and the U.K. have chosen not to focus overtly on aged care but prefer to pursue a general transfer of the principles and practices into primary care systems using a palliative and end-of-life care approach. HPPC asserts that dying is a matter for community management and that health service providers need to respond to rather than direct the experience of dying. It brings into focus the social contexts of beliefs and practices surrounding death; the tradition of good death; role of health education, including death education, social support and interpersonal reorientation and finally, exploration of policies that do not separate dying from living (Rumbold, 2011). Accordingly, this approach also pays attention to expressed needs of the elderly with respect to settings in which they wish to die, the ways in which health services should meet those needs and strategies to prevent distress and minimize harm to the dying, their families and caregivers. The HPPC strategy of Kellehear can be put to practice to achieve clear cut goals – promoting noninstitutional services, encouraging openness about illness and dying, enabling older people to exercise choice and control over caring interventions, minimizing their fear of death and maintaining family and other networks. HPPC may thus have the potential to overcome some of the problems encountered with palliative care by scholars and practitioners uncomfortable with its direct health services approach where dying people – whether dying of cancer or frailty – are viewed as sites for more services. They have been critical of its focus on a narrow end of behavior like physical symptoms of illness, psychological problems related to depression or pain control (Robinson et al., 2005; Seymour, Clark and Philip, 2001). The focus on this ‘bedside’ approach to care means that ‘care’ is nearly always formulated in face-to-face, patient–clinician style encounters suitable for professional or institutional interventions. Symptoms related to diagnosed disease become the focus of palliative interventions

Palliative care 101 without much thought on how the management of symptoms themselves affects the dying people. Thus, tumors might reduce in size and pain might be relieved, but suffering remains untackled. In principle, palliative care is yet to imbibe the essence of holistic care. It remains essentially disease-oriented, and disease and symptoms need to be conceptualized. A systematic review conducted by Pasman and colleagues (2009) revealed a number of quality indicators referring mostly to palliative care outcomes and processes. Interestingly, psychosocial and spiritual aspects were scarcely represented. However, many new initiatives have occurred in the last few years as reflected in the revisions made by De Roo et al. (2011) on the quality indicators of palliative care. Eight domains were identified3 but the authors conclude that the major focus still remains on the process and outcome of care than on other aspects like spirituality or culture; the focus is still very cancerspecific and tailored to suit specific health care settings only. In other words, palliative care is still much formalized and does not step beyond institutional care. In many parts of the world, the social approaches to care are simply omitted, and this becomes extremely problematic for diseases like dementia where the community has a significant role to play and nonclinical, social interventions, such as environmental modifications, may also have a possible value in caring. WHO estimates that by 2050, 22 percent of people above the age of 60 years will live with dementia, one-fourth of whom would be from Asia, Latin America and Africa (Duthey, 2013). Demented persons suffer from cognitive impairment, mood inconsistencies, pain, loss of appetite and urinary inconsistencies. Nonclinical interventions like communication and assistance can go a long way in comforting such persons. The ‘NHS Choices’ (2013) suggests range of caring tasks and assistance for a demented person while taking a meal, bathing, dressing or staying in room. Maintenance of safety and peace at home becomes top priority. Eliciting help of doctors might be occasional or need-based. In his book Rethinking Palliative Care: A Social Role Valorisation Approach, Sinclairs (2007) echoes this thought by suggesting that ever since palliative care has carved out a definite and predesignated template of care regimen, it has become a specialized treatment all together – a cadre of formally trained nurses, a group of skilled physicians, a separate space and a different set of behavior – to which many of the affected persons are not accustomed. Curer (2001) notices how palliation for a cancer patient ends up altering the living pattern of the ailing person. Caregiving in itself loses all spontaneity and becomes an artificially discernible and overtoned approach. Do such patients react, revolt and bargain as much as their families before they succumb to a sort of sedative-based treatment called palliative care? There are very few elderly patients’ stories where the disease is acknowledged to be terminal and yet they are not receptive to choices offered by palliative medicine and hospices. What are their experiences like? In a study of the dying process in a hospice in the U.K., Lawton (2000) noted that physical degeneration that happens commonly when elderly people die causes an inevitable destruction of the self. This renders the very goal of hospices, namely, to enable patients to retain control over their lives until death, difficult to achieve in practice.

102  Palliative care

Palliative care in India In India, the escalating figures of elderly patients with Long Term Care needs indicate the urgency for palliative care. It is obvious that concern is raised in many quarters about the capacity of the present health system to meet their needs. The issue is serious given the fact that many states do not have adequate palliative or aged-care program and virtually no operational end-of-life care strategy at all. A weak and an almost defunct public health delivery system results in a deficient care structure for elderly. Government statistics show that across the country there is still a need for 7,954 primary health centers, 43,776 subcenters and 3,044 community health centers. Furthermore, the ratio of doctors to population is dismal – 1:2,000 – and the country is yet to achieve the target set by the High Level Expert Group on Universal Health Coverage of 1 doctor per 1,000 people (Sachan, 2014). This slow progress in improving the public health system is attributed to poor public expenditure on health that, in turn, results in poor infrastructure and low degree of public health education (Das, 2012; Chauhan, 2011). As a result, communicable diseases, reproductive health and nutritional deficiencies are still an unfinished agenda. Over and above, management of chronic diseases has begun to demand attention. Promoting palliative care for dying patients, especially the geriatric population, seems a distant dream. In this context, Singer and Bowman’s (2002) review on the global genesis and evolution of end-of-life care (EoLC) programs is relevant. The authors opine that EoLC research has three distinct phases: clinical approach wherein pain control and symptom management are addressed as ‘jigsaw’ puzzle, organizational approach in the form of initiating hospice movement where death and dying is acknowledged with dignity and, finally, a public health approach wherein palliative care does not involve a different specialized service but gets integrated with holistic care. For public health approach, the authors suggest that a major bulk of care for terminally ill patients has to be dealt at the primary level whereas specialized medical attention may be restricted for only few cases that are unmanageable without expert intervention. Developed countries have already passed these two phases and are currently in the final lap. In comparison, developing countries lag far behind in making palliative care a public health agenda. Despite these problems, since the 1980s, a few NGOs in India have started engaging themselves in palliative care with help from international donors and individual agencies. Different models have developed – stand-alone facilities, hospice-cum-palliative care training centers and a few scattered examples of palliative units situated within acute-care centers. In 2003, the International Observatory on Death and Dying identified 23 free-standing hospices located in 12 states/provinces in India. These provided inpatient facilities and, in many cases, a homecare service also. Most of the hospices were only for cancer patients but a minority did also care for people with AIDS, tuberculosis or other life-limiting illnesses. However, the focus on elderly as a distinct category had then eluded systematic consideration. Presently, after consistent lobbying, a National Program on Palliative Care has been proposed and as a result the National Health Policy (2017) has

Palliative care  103 considered palliation as an essential feature of primary health care. This would hopefully help the swelling population of elderly people also. The 12th Five Year Plan has a provision to implement palliative care activities through the National Health Mission as part of the Non-Communicable Disease or NCD Flexipool.4 The National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke has been test launched with National Programme for Health Care of the Elderly in 100 districts of the country from 21 states (Ministry of Health and Family Welfare, 2011). But as of now, these new initiatives have not ensured an efficient charting out of advocacy, capacity building and organizational strategies to match resources to user, circumstances and needs. There has been little attempt at identifying pockets where help is most urgently required, i.e., states where demographic profile manifests the largest concentration of elderly with palliative needs. Some states have more than the national percentage of elderly (8 percent) as per 2011 census – Andhra Pradesh (8.8 percent), Gujarat (8.3 percent), Himachal Pradesh (10.4 percent), Jammu and Kashmir (8.4 percent), Karnataka (8.4 percent), Maharashtra (12.6 percent), Odisha (9.3 percent), Punjab (9.3 percent), Tamil Nadu (9.5 percent), West Bengal (8.2 percent) and Kerala (12.6 percent). Surprisingly, the state-wise distribution of palliative centers in India seems to be quite incongruent with this demographic picture. According to the Directorate General of Health Services, Ministry of Health and Family Welfare (2012), there are four palliative centers each in the state of Andhra Pradesh, Maharashtra and West Bengal; two each in Gujarat and Punjab; one each in Jammu and Kashmir and Odisha; 12 each in Karnataka and Tamil Nadu; and no palliative center at all in Himachal Pradesh. This means a huge chunk of elderly population in these states/union territories are likely to have an unmet need for palliative care. Barring Kerala, which has 184 centers, most states have not fared well. Government policy and support, narcotic regulations, community involvement and awareness of doctors remain poor. Of the states mentioned earlier, Andhra Pradesh, Gujarat, Punjab and West Bengal have not amended the Narcotics Law. It thus seems that Dr. Rajagopal’s (the founder of the movement) observation made in 1996 remains relevant in the present situation. According to him, there are many states that do not have any palliative care services, oral morphine reaches less than 1 percent of the needy and ‘the medical and nursing profession at large, have not accepted palliative care as an essential part of health care’ (Rajagopal, 1996). A  recent data shows that Indian consumption of opioid, in milligrams consumed per capita, is still very low compared to global standards. While the Global Opioid Consumption in Morphine Equivalence (ME) measured in milligram (mg) per person rose from 1.82 in 1980 to 61.66 in 2011, the morphine consumption in India (in mg/capita) was only 0.12 in 2012, having increased from 0.07 in 2001 (Pain and Policy Studies Group, 2013) A health ministry report corroborates the unmet need for palliation; less than 15 percent of people in India die suddenly, but it is estimated that less than 2 percent people have access to palliative care that can relieve the suffering at the end of life. In many cancer patients, late screening and diagnosis delays the initiation of palliation, which is received very close to their life’s endings (Raghavan, Palat and Rajagopal, 2005; Pradhan, 2007). By a rough estimate, nearly 80 percent of the

104  Palliative care patients with cancer are diagnosed at the terminal or advanced stage when barely around 90 days remain for these patients to receive palliation. The Lien Report in 2010 also substantiates the point about poor access to palliative care across India, with the exception of Kerala, which provides two-thirds of India’s palliative care services despite having only 3  percent of India’s population (Economist Intelligence Unit, 2010); 841 of the total 908 palliative centers are situated in Kerala. The state has also extended the definition of palliative care to include the long-term chronically ill and even the mentally incapacitated. There are about 4,000 trained volunteers, about 25 doctors, 15 staff nurses and 50 trained nurses working full time in palliative care in the state. In addition to this, there are many health care professionals who contribute part of their time for palliative care. The state is also credited to have a formal palliative care policy in place, and its government provides funding for community-based care programs. It is also one of the first states to relax narcotics regulations to permit use of morphine by palliative care providers. Since 2001, the project on Neighborhood Network in Palliative Care (NNPC) has transformed traditional, institutional-based palliative care experiment, and has employed an army of volunteers that deliver services to patients who largely remain in their own homes. The system is run by the community, operated and funded largely through local micro-donations, sometimes of as little as Rs 10 per month. In recent years, local governments have become increasingly involved as the project gained prominence. The NNPC’s volunteers identify and supplement the work of health care professionals linked to the state’s 230 local palliative care units. Globally, such regional palliative care networks (PCNs) that have a community development approach and are cost effective and responsive to patient needs have commanded great interest. A  report by Canadian Hospice Palliative Care Association confirms from its extensive review of globally successful palliative care models the importance of such regional palliative care networks (cf. Hodgson, n.d.). However, a more incisive analysis needs to be done. For instance, data on drop-out rates in palliation paint a rather dismal picture. A prospective study done by Unni and Edasseri (2012) in a palliative clinic at Thrissur, Kerala, found that on an average the drop-out rate is 25.06  percent. Nearly 37  percent of the patients dropped out due to unavailability of medicines from the clinic and unwillingness to be transferred to specialty hospitals. Financial crisis was not a major factor and neither was their distance from home. Middle-aged people, completing secondary level of education and from poor socioeconomic background tended to drop out more than others. The study inferred that people with poor social support did not return to the clinic, raising perplexing concerns about the level and type of care available to them. However, the study did not take into account the length of time people stay or receive treatment at the clinic before they decide to drop out. In yet another study conducted in two Gram panchayats of Kerala, the palliative program as perceived by the respondents was characterized by poor doctor visitations and poor frequency of visiting teams. Home-based palliation – clinical in approach, without a service mix and provided at irregular intervals – did not promote good end-of-life care for the community of rural people engaged in fishing and other manual labour. The study found elderly living under extreme financial

Palliative care  105 distress with inadequate shelter and poor social security provisions. The health profile was characterized by high level of functional dependence and need for assistance with activities of daily living. Many widowed women were completely dependent and some were living alone without appropriate food and care. There were few without shelter, and the agony of homeless existence was compounded by serious multiple morbidities, particularly locomotor and speech problems. The study raised serious questions on the nature of palliative program for marginal populations. (Jayalakshmi, Chopra Chatterjee & Chatterjee, 2016)

Palliation: outside the domain of biomedicine and within it Barring a few exceptional success stories in India, the field of palliative care has remained limited in scope. Field visit to a cancer hospital in Eastern India conveyed the marginalized status of palliative units in the state. A four-story building in the hospital premise was reserved especially for palliation and housed patients who had already undergone several rounds of chemotherapy with no prior palliation. They were mostly aged and were admitted to the palliative ward after acute interventions had failed to yield sufficient results, but had already taken a heavy toll on their health. There were also many patients who were using the palliative premise as a sort of short-stay arrangement between two sessions of radiotherapy or chemotherapy. These patients, having come from distant villages and unwilling to return without completing their treatments, found it convenient to stay in the palliative care ward. The next day visit to the IPD further lend credence to the isolated domain of palliation. There were many patients whose summary records by the attending nurse indicated that they had come from different ‘specialty’ clinics; almost all them were wrongly diagnosed and treated, by which time the cancer cells had spread beyond control. For instance, a lady with pain in her pelvic region was mindlessly operated in an orthopedic surgical unit. Later, when the surgeon met for a tumor board conference with oncologists of another specialty center, it was found that the lady was suffering from breast cancer with bone metastasis. It was too late at the orthopedic hospital. Moreover, it was not equipped for diagnosis and treatment of breast cancer. The patient was finally transferred to the palliative unit of the cancer specialty hospital under reference. It thus emerges that given the fuzzy nature of cancer treatment in many hospitals in India, provision of palliative care at the far end of disease prognosis is a consequence of poor treatment provisions rather than a planned strategy. However, broaching the issue with a doctor-in-charge of the ICU of the hospital, the query elicited an arrogant reply that suggested that the doctor belonged to the genre of ‘definitive treatment,’ and that palliation was considered a separate domain when all medical options were exhausted and nothing more remained to be done. There was no indication of the possibility of providing palliation as the main goal of care or along with curative treatment. Such marginalization has been a source of continuous irritation for some palliative specialists aspiring for greater recognition of their field. In fact, a recent editorial in the Indian Journal of Palliative Care bears the title, ‘Time for Change:

106  Palliative care Integrating Palliative Medicine to Mainstream Medicine’ (Salins, 2014), thereby, conveying the trend in palliative medicine to discard the traditional model, wherein palliative interventions were made only after acute interventions failed. In the emerging acute palliative care unit model, all clinically indicated interventions are provided in addition to symptom management measures, which at times creates considerable confusion as to whether it should be perceived as ‘treatment’ or care. Very often, palliative units also pursue treatments that are likely to be aggressive. This is illustrated in the case of a lady in her late seventies who, affected by lung cancer, traveled a distance of over 280 kilometers to reach the cancer hospital. The lady had so far received a total of 17 chemotherapy sessions and had withstood the side effects well. She became an illustration of the doctor’s valorous attempts to recuperate her from the deadly lung cancer – a story that was shared in every classroom – with the patient unable to identify her own source of strength and courage in enduring the tedious train journey. It was difficult to ascertain whether she could understand the implications of 17 chemotherapies administered to her, or whether a full range of information was available with her to let her exercise her own choice about the future course of treatment. Anyway, this case, which treats chemotherapy as synonymous to palliative care, is likely to be dismissed by others as a sign of poor management, especially when patient information to facilitate decisions on life course are not available (cf. Rabow, 2014). What constitutes an ideal palliative care also remains nebulous. By and large, it reflects a predominantly Western approach to EoLC. Although a distinct specialty often at crossroads with mainstream medicine, it appears to be strangely co-opted by the field of biomedicine  – itself an alien system of healing in India. There are different models of palliative care in India, and one does not really know how effectively these models respond to pain and suffering of the elderly and their families and the competence of different caregivers, both paid and unpaid, to respond to end-of-life care. Referring to the cancer care hospital mentioned earlier, it was found that as opposed to the patients who somehow stayed in palliative units to complete their treatment, there were also many who literally ‘fled’ away to their native places to die in the presence of family and familiar settings. Some informed their physicians about their choice of local healers, but majority just went absconding. These point to another component of palliative care rarely addressed in Indian settings  – death in culturally familiar settings. In an overenthusiastic response to pain management, both biomedicine and palliative medicine often push people to unfamiliar zones, transforming pain to mental suffering and anguish. Such application of Western ‘specialization’ of death has been looked upon skeptically by leading bioethicists like Singer and Bowman (2002) who seem critical and apprehensive of this approach and even consider this as a possible contributing factor to why traditional Western approaches to EoLC have had so little effect in the developing world. They consider the direct application of traditional hospice/palliative care programs to the developing world as problematic. Unfortunately, as recipients of such a system, Indians seem to be blissfully unaware of the contradictions arising from this approach and have done little to integrate local, culturally based perspectives of health, illness and dying in palliative care and EoLC in general.

Palliative care 107 The impact of Western approach to death is fairly evident in annual conferences in the field of palliative medicine, which attract high level of participation of international experts in an effort to ‘train the indigenes,’ so to speak, in meeting a good death. But this is not to give the reader the impression that the Western model has no inherent advantages. In fact, it would be somewhat precocious to state whether it needs to be replicated or discarded. So far, there has been no systematic large-scale audit on service outcomes, and Quality of Death and Dying (QoDD) domains remain untested for palliative care in general and its application to elder care in particular.

Rural urban variations in palliative care There is also little evidence base in India to suggest the nature of inputs that need to be incorporated in palliative care when rural-urban variations are taken into consideration and the delivery modes best geared to such variations. A number of studies on elder population from rural India point to a picture of total neglect. Low income, hunger, disjointed family, loss of familial love and support, multiple morbidities and episodes of acute illnesses contribute to poor mental health of the elderly. Kamble, Ghodke, Dhumale, Goyal and Avchat (2012) show that dying in rural India may not be easy and delivery of palliative care challenging, especially due to lack of relevant information. Mahapatra and Rao (2001), in a review of the death reporting system in rural India, reveal poor coverage and compliance with Guidelines for Cause of Death Reporting system. The situation remains almost unchanged even after a decade with underdeveloped primary health care centers, which render care to the dying impossible. Absence of community-based cadre of nurses makes it difficult to provide out-of-hours services in emergency. While in Kerala Accredited Social Health Activists (ASHAs) in rural areas are trained to facilitate palliative care services, it still appears as a pilot project (Geetha, Ligesh and Remya, 2014) lacking the merit to be scaled up at the national level. Moreover, since Kerala has low burden of maternal and infant mortality than many other high-focus states, it is easier for ASHAs there to spare time for palliative care services in addition to their mandatory maternal and child health services. However, this might not be feasible in other states where reproductive health situation is far from satisfactory. While urban India has done relatively better with palliative care, paradoxically it has served mainly the needs of the poor and those from the urban fringes. In two institutional settings in Maharashtra, people who sought admission there belonged to urban fringes rather than the city as such. And contrary to the idea that these facilities are used by the urban elite (as posited by the International Observatory on End of Life Care, 2003), most were quite poor. In the Palliative Care and Training Centre, Pune, the sole affluent lady who happened to be the spouse of an elderly patient, seemed to be extremely uncomfortable about her stay in an organization that was mostly charitable in nature. Her husband was down with cancer at an advanced age and having been turned down by her family and hospitals, she had nowhere else to go and came to the center. Nurturing a marked sense of hurt and neglect, she found even innocent queries about the patient to be extremely annoying and as invading her privacy.

108  Palliative care At present, home-based palliative care services are run by few NGOs. There are also few serving in inpatient units of acute care centers. Preliminary field observations show that constrained by shortage of workforce, home visits are few and sporadic in nature. The team is not always constituted by a doctor, and large distances are involved in covering each enlisted family so that eventually only a few benefit at the end of the day. The cost of operating home visits per day is also high. In the case of one NGO in Kerala, it ranged from around Rs 13,235 in 2012 to Rs 17,723 in 2013, which was high in comparison to cost of operating outpatient facility for one day, which worked out at Rs 6,627 in 2012 and Rs 6,669 in 2013. Moreover, in case of odd-hour emergencies, there is no way of locating the palliative team. The situation is made difficult on account of poor linkage with GPs and the almost-defunct urban local bodies. The difficulties encountered in home visits to cancer patients were reported by one of the staff working with a very reputed cancer treatment hospitals of south Kolkata. A huge number of hospitalized cancer patients are discharged to their respective family homes in terminal conditions, and attending to all of them makes home visits difficult. While the service is extended to only those who stay at a radius of 25 kilometers around the hospital, there are many in distant places who are left unattended. Moreover, given the poor logistics – lack of dedicated transport and escalating cost of deputing doctors and nurses – only one to two home visits per family are possible in a month, rarely exceeding three. To optimize resources, families that exist in clusters are visited. Thus, geographically scattered families are left out – vulnerable and helpless during emergency situations. It thus appears that a sound territory-wise referral and treatment is necessary to obviate the crisis. It also needs to be borne in mind that enabling people to die at home is a complicated task that needs to devise ways of empowering families to improve home-based models of care. There is a sheer need for public education balanced with early and continuous risk assessment and training for specialists, primary care professionals, informal carers and community volunteers. Also, many patients in India, due to suboptimal conditions at home, would be still better cared at hospital – an issue tackled in chapter 3. In fact, in many cases a sense of abandonment results among the elderly when discharged from institutional settings without adequate care provision at home. More research is necessary to investigate elderly patient’s preferences in India and factors that could indicate directionality or cause for such preferences – illness, individual characteristics or health care inputs, nature of home setting and availability of carers at home. There is also need to find more concrete evidence of whether home-based palliative care in its present form meets the needs of the dying elderly as well as their carers. Demographic evidence indicates that the very perquisite for home care – existence of family carers – may be difficult for the elderly. A recent estimate on old-age dependency ratio in India predicts that dependency would increase from 13 percent in 2000 to 32.8 percent by 2050 (Bhattacharya, 2005). Paradoxically, in the context of changing social scenario, many aged people are likely to live either single or with their elderly spouse, thus, compounding their dependent status. For such elderly living and dying alone, ‘care’ in the statistical sense to cover frugal

Palliative care  109 remittances sent by their children is mostly insufficient to meet their multiple needs. There is clearly a need for institutional Long Term Care facilities for those who do not have adequate care at home. So far, institutional schemes are limited to old-age homes only. A number of senior citizens’ homes on payment basis have recently cropped up as a private initiative in major cities of India. However, their services remain fragmented, palliative inputs to such facilities are limited in scope and coverage and a centralized, strong monitoring system is lacking. Palliative care for destitute elderly poses still another challenge. Studies in the West suggest that street dwellers usually die suddenly and unexpectedly. However, those who live experience several morbidities obviously on account of poverty and unhygienic living conditions. Government programs have been especially designed for their needs.5 This contrasts with abject neglect of the homeless in India, estimated at around 78 million by Action Aid in 2003. With time, this figure might have escalated several times as many grow old on streets, without food, shelter and care. It is not rare to find elderly clustered around street corners, station premises and other public spaces, yet little is known of the epidemiology of death and dying and the challenges involved in providing palliative care to such people. A day at ‘Nirmal Hriday’ – a care home of the Missionaries of Charity for the destitute  – illustrates the unmet need for palliation. The center was started in one of the abandoned structures near the famous Kali temple at Kolkata – a famous spiritual landmark of the city where hundreds of beggars are drawn for alms. Since 1952, it has been extending services to the elderly destitute. The Sisters in the home identify the sick and poor from several places of the city, transport them to the care home in a special van and tenderly look after them till they die or get cured. However, modern methods of palliative medicine are not available to them. They rely solely on spiritual methods to ease pain. Likewise, the gerontopolis in India – Kashi and Vrindavan – have huge unmet need for palliation even among those who embrace the spiritual route to death and dying. The issue of gender and ethnicity also needs special consideration in any unified policy on aging and palliative care. Many countries, particularly Australia, have shown exceptional cultural sensitivity in providing appropriate palliative and end-of-life care for people from culturally and linguistically diverse communities since historical legacy and social injustice negatively impact people’s perception to issues related to withholding and withdrawing acute treatment and receptivity to palliative care. In the U.S., minorities underuse palliative and hospice services even when they have access to such provisions. In other words, each community has a unique need for EoLC, and models of care need to be assessed for their capacity to meet these needs. Such sensitivity is rarely reflected India with respect to the different immigrant groups, and very little data is available to assess their cultural needs at end of life.6

Palliation without a service mix Palliative care in India has a poor service mix  – a feature otherwise necessary for care of the elderly. Unlike many Western countries where medical and

110  Palliative care social welfare approaches have been well integrated, palliation in India remains extremely clinical oriented and fragmented in nature. Structurally too it remains regimented as a distinct care zone or a as a service, both within acute settings and outside it. Very few integrated models exist with free flow of patients from one care structure to another, using well-developed protocols to identify their needs and status. However, in elder care, the importance of integrated approaches has now been well appreciated even by apex organizations. WHO policy framework on Active Ageing is itself multisectoral and multidimensional in nature. Taking cue from such interventions, a greater service mix in palliative care is needed as well. Admittedly, developing integrated models would require enormous organizational reshuffle, the most important of which would involve replacing a fragmented model of health delivery with one that encourages a continuum of care that respects elder choices and needs. Perhaps an area where service mix is urgently required is in aging and disability. As mentioned earlier, the prevalence of disability among people over 65 years has enormously increased. This includes both people with lifelong disabilities who are living into their later years and people who are living longer and acquiring disabilities. These trends – aging with disability and disability with aging – suggest a convergence in disability status in later life. Lightfoot (2007) suggests that historically there have been different approaches to services for older adults and people with disabilities. Aging programs through social action assist and compensate elderly people who experience age-related decline in functioning. Services focus on financial support, disease management, assistance with adaptive functioning and promotion of social well-being. On the other hand, disability programs focus on education, job training and residential services. But now greater attention needs to be given to overlapping needs and constituencies of the elderly persons and those with disabilities since many key issues are common to both  – accessible transportation, consumer-directed services and different residential options. But he suggests there is a need for more evidence-based proactive standards in the area of health care for older people with disabilities. Somewhat different in terms of care requirements are the needs of the aged with mental illnesses. Many elderly succumb to mental health problems as they lose close and confiding relationships and are left with limited social networks. There is a dearth of community studies in India investigating geriatric depression and its associated risk factors. Many aged people with psychiatric problems do not receive any formal institutionalized support as they die. In fact, Indian sensitivity to psychological and psychiatric needs among the elderly is differently developed. Cohen (1998) shows how people in India comprehend the aged body and its behavior outside the pathophysiologic terms like dementia and Alzheimer used in the West. But in an estimate by the Working Group constituted by the Ministry of Health and Family Welfare in 2012, almost 25 percent of India’s elderly suffer from some sort of depression (Planning Commission, 2011). When psychiatric disorders combine with other morbid conditions, more efficient doorto-door health delivery strategies are needed, and conventional services of private practitioners and poorly equipped health centers are likely to be inadequate.

Palliative care 111 An area that is woefully neglected in discourses on palliative care in India is the special needs of aged with intellectual impairments. The advent of middle and old age for such people is a relatively new phenomenon globally. Some of them, like those with Down’s syndrome, have higher prevalence and earlier onset of agerelated sensory and musculoskeletal problems resulting in additional disability, as well as risk of developing dementia. So far, government responses to the challenges of this group are negligible. There is a need for aging/disability-supported accommodation with multisectored help. The government is also oblivious of the challenges involved in palliation for a huge elder population with speech and hearing impairments. Of the 1.2 billion population in India (as per 2011 census), an estimated 18 million people have such impairments. But data disaggregation by age is not available for this population. In contrast, sensitive projects have been devised in the West like the End-of-Life Care Education Project of the Minnesota Deaf Community, which has created special provision to train their palliative carers in understanding sign languages and thereby effectively attend to such populace with special needs (Allen, Meyers, Sullivan and Sullivan, 2002). Volunteers are specially trained to listen, estimate and provide assistance to people requiring pain relief and other help. In short, one does agree with Pandya (2005) that palliative centers play an important role, but their patterns and practices need considerable modification from those adopted in Western countries. A proper situational analysis is necessary to align resources to needs. Stjernswärd, Kathleen and Foley (2007) identify a host of factors, such as population statistics, health care system, disease demographics, socioeconomic statistics, community resources, social action network, policies and regulations, manpower training and distribution, funding of health care delivery systems, health care personnel, medications and therapies, equipment and supplies, medication usage (opioid and essential medicine availability), laws and regulations governing prescriptions and opium quota and usage. Lacking a proper situational analysis, experiments in palliative care are likely to be frustrating. A founder president of a palliative center in Tamil Nadu spoke of a continuous stress induced by paucity of funds. While donors looked for some visible indicators for outcome assessments, there were none, she said, since her program was mostly home- rather than institution-based, and people whom she served were dying. In order to boost credentials for her organization, she worked in a partnership mode with the government to set up a palliative unit in a primary health center. But the government, while allocating a spacious accommodation for palliative care, failed to assist her with other infrastructural inputs like a hostel for nurses, transport, etc. The end result was a unit without the capacity to deliver care to the rural masses!

Is the nation prepared for a full-fledged palliative approach to EoLC? It has been noted in the previous section that there are glaring gaps in the provision of palliative care. This prompts the query: Is the nation prepared for a

112  Palliative care full-fledged palliative approach to EoLC? It is evident that many of the structural factors that have served as propeling forces for introduction of palliative care in the West are located differently in India. Some are, in fact, non-existent, and others cannot be overcome with the same strategies as adopted by the West. It is difficult to overlook the fact that the new specialty approach has been introduced in India’s health care system, which has the lowest health spending in the world. India spends only 4.2 percent of its total GDP on health care. In the Union Budget 2015–16, the government has introduced some welfare provisions like Senior Citizens’ Welfare fund, assistance for physical aids and devices, lower tax deductions, low health insurance premiums and special deductions for treatment of specified diseases like cancer, AIDS, etc. However, these provisions are paltry and as HelpAge India’s report on ‘State of India’s Elderly 2014’ shows, there are no dependable community support systems and government schemes. In such a scenario, a system geared toward enhancing quality EoLC, particularly for the very old and frail elderly, is likely to raise uncomfortable ethical issues. Garrard’s (1996) observation, although contextually in a different space and time frame, is still relevant to India. A reasonable choice, he says, has to be made between alleviating one person’s distressing symptom and actually saving another person’s life. Attributing moral propriety to quality rather than quantity is well nigh difficult. Even if one succeeds in resolving this dilemma, improving EoLC as a priority concern in India without bringing about structural improvements in the existing health care delivery is impossible. For instance, as mentioned earlier, quality palliative care services require an integrated health care planning involving hospital care, home care and palliative facility/hospices – a feature lacking in India. In the absence of a continuum, palliative care is likely to remain an isolated strategy of healing. To establish a continuum, a proper identification, referral and assessment system is necessary. This would be possible only when Primary Health Centers are strengthened and the role of the General Practitioner (GP) at each level of health delivery is acknowledged. Unfortunately, the recent trend in India towards ­disease-specific patient care has marginalized the role of the GP so crucial to noncurative aspects of therapeutics. Broad-based structural changes in this respect require change in the present medical education, which remains extremely skewed in favor of specialized, technological medicine. To redress this imbalance, the National Programme for Health Care of the Elderly (NPHCE) plans to open two post-graduate seats for palliative care in each of the eight Regional Medical Institutes of India. Although some such changes are being made to accommodate this field, more thrust is required to develop relevant guidelines to help medical practitioners make a transition from cure to care with corresponding education and awareness among both patients and families about the importance of palliative care. At present, doctors are poorly inducted into EoLC issues, especially pain and symptom management. This is evident from the considerable uncertainty that surrounds adequate dosage of sedatives that are often administered in lieu of analgesics. This is unfortunate given the fact that even smaller nations like Israel have exhibited great sensitivity by palliative teams in reevaluating drugs prescribed

Palliative care  113 to older adults and reduce chance of polypharmacy. Such attempts have merited appreciation from caregivers, family members and even older adults in improving their life. Needless to say, a rational drug policy is very important for palliative care. Persons within curable and other chronic illnesses need medicines for prolonged periods, which may not be affordable through out-of-pocket expenditures. Hence, such medicines for palliation need to be included in the Essential Drug List of the Government hospitals. In a recent initiative, Indian doctors practicing palliation, in association with the WHO Collaborating Center, Madison, Wisconsin, were able to persuade the Government of India to simplify narcotic regulations. As, a result, 13 out of 28 states in India now have simplified and amended narcotic regulations (cf. Pallium India, 2012). But there is still need for adequate guidelines for procuring, storing and dispensing medicines.7 There is also a need for rigorous structuring of medical curriculum; even social science inputs need to be streamlined and new ways of incorporating research in policy measures have to be devised. This requires a critical examination of the existing conceptualization of both aging and palliation within a unified framework that takes into account both macro- and microlevel social analysis to understand the context and dynamic process of aging and its needs. Such socially congruent perspectives necessitate a relook at aging and dying from a politico-economic framework, focusing on socioeconomic and political constraints that shape the experience, and structural factors like class, gender, race and ethnicity that get institutionalized and reinforced by economic and public policy. A sensitive theorization to this effect is currently not available in India to facilitate EoLC. In addition, the Government needs to spell out a strong National Palliative Care Policy and standards. Many countries abroad have well-defined palliative care structures, protocols and liberal funding strategies. As mentioned earlier, most early organizations in India have been based on charities and donations. Recently, a draft policy has been formulated addressing nearly 280,000 cancer patients (reported anytime in India) and 50,000 patients dying mostly with pain and suffering. It also responds to nearly 270,000 patients affected with AIDS. The policy aims to fulfill certain objectives like developing service components for palliative care within existing national program – particularly the NRHM, easing opioidrelated legal constraints for medical and scientific purpose, sensitizing health care professionals, bringing behavior change in the community, setting standards for palliative care and involving private health institutions in this effort. It advocates recruiting one physician and two nurses at 150 Regional Cancer Centers and government medical colleges and 200 district hospitals, one nurse in every 700 selected community Health Centers across 100 districts and train human resource to ensure competent staff availability. As a strategy to improve infrastructure, there are recommendations to reserve proportionate number of beds for palliative care at the tertiary level. It is proposed that CHCs provide palliative care through OPDs at least three times per week and also home-based care in the 25 kilometer radius. Referral and mass awareness generation are directed at the primary level. As a capacity-building strategy, introduction of palliative care in an existing national level training program is required. Advanced level training programs

114  Palliative care are also planned for senior health professionals on a periodic basis in different settings. There is a system for motivating students and faculty to take it up as distinct topic for specialization. To encourage community response, there is a greater emphasis on roping in civil service organizations and existing rural health workers like ASHAs for generating public awareness. Also, there is an attempt to train as many people as possible in basic nursing courses, improve skills in communication and in providing emotional support. Popular broadcasting media like radio, television and print is also proposed to be engaged in IEC activities. Finally, it is proposed that through the national steering committee, periodic assessment of the progress of palliative care in the country be measured following WHO guidelines. For this, reorienting Health Management Information System (HMIS) may be necessary to collate data related to transition between care set-ups. The need for continuum of care for dying elderly in any given community can be obtained with minimal data loss. The proposed plan has also spelled the need for quality control on palliative drugs and encourages nonmedical treatments for pain. Despite these ambitious plans, the 12th Five Year Plan has no special budgetary allocation for palliative care. The impact of this is likely to be felt in a country that has 22 percent of population living below the poverty line (Planning Commission, 2013) with health risks, 36 percent who are illiterate (Census of India, 2011) and only 17  percent covered by an insurance sector that has so far failed to either improve coverage or devise regulatory policies to meet the needs of the elderly for Long Term Care (Deloitte, 2014:9). Needless to say, palliative care may run risks of inefficiency if there is no proper framework on these matters and if it is left to individual enterprise only. An important issue related to funding for the elderly is deciding what aspects of palliation need to receive the greatest thrust. Should the aim be to provide the best possible services for a limited number of patients of a specific age group, or should there be an excellent pain and symptom control for everyone? In case the latter is a preferred option, the broad-based goals of end-of-life care would require a more direct role of the state. A National Palliative Policy framework would then need to spell out state provision and formal mechanisms by insurance providers for meeting the needs of the elderly for Long Term Care. So far, the state in India has played a very limited residual responsibility in both palliative and end-of-life care for the elder. Even in Kerala where palliative care has received state support, the dependence on community initiatives for raising funds is evident. In one small town at the local bus station, for example, the bus crew collectively raise money, each person donating five rupees a day. The total amount collected helps to buy free drugs for poor people. In another town, fund collection boxes are kept in individual households for buying palliative medicines for the poor. Although these are impressive examples of community support, they also expose the paltry involvement of the state in such activities. Also, the shrinking role of informal caregiving in present times compels a greater role for the state in institutional care for the elderly who are poor and living and dying alone. Advocacy strategies are evidently necessary to change policies, legislation and resource allocation for development and improvement of existing palliative services so that the elderly

Palliative care  115 can benefit on a sustained basis. This does not, however, translate into a unicentric welfare system in which the state remains the only dominant service provider for elderly and those needing palliative care. But worldwide experiences confirm that in essential services, such as health and education, government support augments many grassroots experiments. Even in poor resourced countries like Uganda, government action has resulted in effective coverage of palliative care and in removing barriers in access to morphine. Provision of palliative care in India also needs to carefully look at the issue of manpower, given the fact that the country is already facing an acute shortage of trained health workers. At present, the scarcity of skilled workers, particularly nurses (who consider it a low-profile job), severely constrains palliative care services. Personal field observations in several states (other than Kerala) show a serious shortfall of health workers in palliative services often caused by a huge turnover of nurses. The situation is made worse by the fact that the government has no well thought-out strategies for curbing the exodus of trained nurses to Western countries, which mitigate their own crisis through outsourcing professionals from India and other Asian countries. It may be mentioned that Asian countries are the largest supplier of nurses to the West, especially to the U.S. and the U.K. Thailand contributes 25 percent of nurses to global workforce followed by India (Matsuno, 2009). Percot (2006) estimates that around 60,000 nurses working in Gulf countries are migrants from Kerala. In the year 2000, India ranked as the sixth highest country to supply nurses to OECD countries (Zurn and Dumont, 2008). However, such outflux of nurses from India poses severe scarcity in the homeland (Gill, 2011). Currently, India ranks high on the list of South and South East Asian countries that have the greatest shortfall of health professionals. Apart from shortage of nurses, there is dearth of physicians too. This is reflected in a poor doctor-patient ratio that stands at 0.5 per 1,000 population (Planning Commission of India, 2012). According to the 12th Five Year Plan document, availability of health care services in both public and private sectors is quantitatively inadequate. At the start of the 11th Plan, the number of doctors per 100,000 of population was only 45 against the desirable number of 85 per population. Similarly, the number of nurses and auxiliary nurse and midwifes (ANMs) available was only 75 per 100,000 population, whereas the desirable number is 225. Rural areas are especially poorly served. This, combined with mismanagement of existing facilities and manpower, make it difficult to sustain care-intensive health settings. Finally, while palliative medicine’s enormous potential to provide holistic endof-life care remains unearthed, it has unfortunately also failed to workout linkage with indigenous medicine, possibly due to the monopolistic onslaught of biomedicine. While there is a growing scholarship that supports a relook at several indigenous practices of death and dying, linkages with folk and traditional systems of medicine are still superficial in our country. It is possible that this lack of inclination stems from limited expertise for integrating the diverse findings of indigenous medicine with palliative medicine. But if WHO’s guideline for palliative care that lays special attention on multidisciplinary teams, including traditional healers and

116  Palliative care spiritual leaders, has to be adhered to, a deeper look into alternative healing systems has to be considered. Indigenous medicine in India weaves spirituality in ways difficult to decipher in the Western framework, which is struggling to locate it within mainstream medicine as a mere service input. But the precise meaning of spirituality within the modern health system remains fuzzy and unclear. Spiritual healing involves engaging the dying person’s consciousness. But how does one achieve this? Can spiritual care be delivered from within the structure of professional care or outside it? How does one integrate a spiritual care plan with medical care? Do we deliver it independently or with the nursing and medical care plan? Can the patient in the grip of pain really draw solace from spiritual discourses that are meta-body in nature? Do the meanings attributed to illness by the spiritualists on the one hand and the doctors on the other create contradictions in meanings for the patient? In some cultures, it may even juxtapose the almost fatalistic doctrine of life and death (as in Buddhism) with the awesome optimism of Western medicine to cure all diseases. It may also contradict the basic philosophical underpinnings of indigenous systems of medicine like Ayurveda, which clearly admit the limitations of physicians in healing all complex diseases. There is not much empirical research in Indian as well as Western explorations of spirituality to substantiate all this. We also don’t know the nature, mechanism and delivery of spiritual care in different settings. A particular hospice, for instance, may consider a quiet, companioning presence, just listening to the dying, an expression of love and companionship, a humorous or friendly chat and prayers as constituting spirituality. Others may lay primacy on excellent interpersonal skills and communication (Buckman, 2000). The variations in meanings can be immense. Finally, the efficacy of spirituality in nursing practices, as Peberdy (2000) has rightly pointed, depends also on structural and organizational factors. Spiritual matters are not only matters of relationships between individuals; the ethos of the institution and morale of the carers are equally important. This might involve improvement in the employment conditions of nurses and caregivers and increase in the amount of support and recognition to informal caregivers as well.

Notes 1 Recently, efforts have made in Western countries to overcome the distinctly cancerspecific approach of palliative care. For instance, the Marie Curie Cancer Care in U.K. has shown high level of stewardship by establishing linkage with the British Heart Foundation Scotland and NHS-Greater Glasgow and Clyde for patients with heart failure. Officially known as ‘The Caring Together,’ the program aims to deliver palliative care in different settings. It covers 1.2 million people. (Available at www.mariecurie. org.uk/professionals/commissioning-our-services/partnerships-innovations/current/ caring-together). 2 This is based on the public health concept of a population approach linking the World Health Promotion guidelines provided by ‘The Ottawa Charter.’ Among the many goals of Public Health Palliative Care are building public policies that support dying, death loss and grief, creating supportive environments (in particular social supports), strengthening community action, developing personal skills in these areas and reorientating the health system (Kellehear, 1999).

Palliative care 117 3 These are (a) structure and process of care (e.g., organizing training and education for professionals, providing continuity of care); (b) physical aspects of care (e.g., measuring and documenting pain and other symptoms; assessing and managing symptoms and side effects); (c) psychological and psychiatric aspects of care (e.g., measuring, documenting, and managing anxiety, depression and other psychological symptoms; assessing and managing the psychological reactions of patients/families); (c) social aspects of care (e.g., conducting regular patient/family care conferences to provide information, discuss goals of care and offer support to patient or family; developing and implementing comprehensive social care plans); (e) spiritual, religious and existential aspects of care (e.g., providing information about availability of spiritual care services to patient or family); (f) cultural aspects of care (e.g., incorporating cultural assessments, such as the locus of decision-making and preferences of patient or family regarding the disclosure of information and truth telling, language and rituals); (g) care of the imminently dying patient (e.g., recognizing and documenting the transition to the active dying phase; ascertaining and documenting patient/family wishes about the place of death; implementing a bereavement care plan); and (h) ethical and legal aspects of care (e.g., documenting patient/surrogate preferences for care goals, treatment options and the care setting; making advance directives; promoting advance care planning). 4 Fund allocation for different programs under the National Program for the Control of Cancer, Vascular Diseases and Diabetes, Health Care of Elderly (Geriatrics Care) and Mental Health are as follows: National Cancer Control Program, outlay of Rs. 731.52 crores; National Programme for Prevention and Control of Diabetes, Cardiovascular Diseases and Strokes, Rs. 499.38 crores; National Mental Health Programme (district component),Rs. 600 crores; National Programme for Health Care of the Elderly, Rs. 288 crores. Each of these programs strategizes to improve the infrastructure, expand coverage to include city fringes and hinterlands, and enhance capacity of all types of health workers. It aims at reducing unnecessary out-of-pocket expenditure and patient flow to city hospitals by giving thrust on preventive and promotional strategies of health care. The National Program for Health Care of Elderly (NPHCE) is a recent addition to the list of these programs which was made in 2010–11. 5 In the Balm of Gilead, poor people receive all sorts of support ranging from physical examination, pain relief and emotional and religious support. Health Care Program for Homeless (HCH) is one such program where the service providers cater to various health needs (primary health care, dental care and behavioral support) of the homeless whose access to institutionalized services are limited by their inability to travel up to health facility points and pay for the services (Post, 2007). 6 As per the 2011 census of India, around 80.5 percent of Indian population are Hindus, 13.4 percent are Muslims, 2.3 percent Christians, 1.9 percent Sikhs, 0.8 percent Buddhists and 0.4 percent are Jains. A very small portion of 0.1 percent said to practice no religion at all. 7 On 21 February 2014, the Parliament of India approved amendments to the Narcotic Drugs and Psychotropic Substances Act, 1985. The amendments were aimed at eliminating barriers associated with storing and dispensing the drugs. Earlier, hospitals had to undergo a cumbersome process of obtaining separate licenses for procuring, stocking and transporting morphine. Each of the licenses was issued through different government departments. Due to this administrative hassle, hospitals discouraged doctors from prescribing morphine that left patients in pain and suffering. Through this amendment, interstate variation in handling narcotics is also reduced. Instead of state government, Govt. of India is now authority to endow license to medical institutions through a single window. All that the medical institutes have to do now is to acquire a status of RMI (Recognized Medical Institution) that will allow them to deal with narcotics. Drug Controller in each state is empowered to monitor narcotic use in each of the licensed institute.

118  Palliative care

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Palliative care  119 Economist Intelligence Unit. (2010). The Quality of Death Ranking-End-of-Life Care Across the World. The Lien Foundation. Eurostat. (2016, June 16). Causes of death statistics - people over 65. Retrieved from http:// ec.europa.eu/eurostat/statistics-explained/index.php/Causes_of_death_statistics_-_people_ over_65#Main_statistical_findings Fallon, M., and Foley, P. (2012). Rising to the challenge of care for non-malignant disease. Palliative Medicine, 26(2), 99–100. Futureage. (2011). A Roadmap for Future Ageing Research. Sheffield: Futureage. Garrard, E. (1996). Palliative care and the ethics of resource allocation. International Journal of Palliative Nursing, 2(2), 91–4. Geetha, M., Ligesh, K. T., and Remya, P. (2014). A structured palliative care training program for ASHA. Indian Journal of Palliative Care, 20(1), 66–87. Gill, R. (2011). Nursing shortage in India with special reference to international migration of nurses. Social Medicine, 52–9. Hall, S., Petkova, H., Tsourus, A., Costantini, M., and Higginson, I. (2011). Palliative Care for Older People: Better Practices. Copenhagen: WHO. Hodgson, C. (n.d.). Cost-effectiveness of palliative care-areview of literature. Canadian hospice Palliative Care Association. Retrieved December 1, 2014, from http://hpcintegration.ca/media/24434/TWF-Economics-report-Final.pdf Jayalakshmi, R., Chatterjee, S. C., and Chatterjee, D. (2016). End-of-life characteristics of the elderly: An assessment of home-based palliative services in two panchayats of Kerala. Indian Journal of Palliative Care , 22 (4), 491. Kamble, S., Ghodke, Dhumale, G. B., D. G., Goyal, R., and Avchat, S. (2012). Mental health status of elderly persons in rural area of India. Indian Journal of Basic & Applied Medical Research, 309–12. Kellehear, A. (1999). Health Promoting Palliative Care. Oxford: Oxford University Press. Kellehear, A. (2005). Compassionate Cities: Public Health and End-of-Life Care. London: Routledge. Lawton, J. (2000). The Dying Process. London: Routledge. Lightfoot, E. (2007). Disability. In Blackburn, J. and Dulmus, C. N. (Eds.) Handbook of Gerontology: Evidence-Based Approaches to Theory, Practice, and Policy (pp. 201–29). Mahapatra, P., and Rao, P. C. (2001). Cause of death reporting systems in India: A performance analysis. National Medical Journal of India, 14(3), 154–162. Marie Curie. (n.d.). Caring together. Retrieved November 12, 2015, from www.mariecurie.org.uk/professionals/commissioning-our-services/partnerships-innovations/current/ caring-together Matsuno, A. (2009). Nurse Migration: The Asian Perspective. ILO/EU Asian Programme on the Governance of Labour Migration Technical Note. International Labor Organisation. Ministry of Health and Family Welfare. (2011). National Programme for Health Care of the Elderly. Retrieved from http://mohfw.nic.in/index3.php?lang=1&deptid=36 National Instute on Aging. (2011). Global Health and Aging. Geneva: WHO. NHS Choices. (2015, January 23). Looking after someone with dementia. Retrieved January 31, 2015, from www.nhs.uk/conditions/dementia-guide/pages/dementia-carers.aspx Pain and Policy Studies Group. (2013). Opioid consumption data. Retrieved September 3, 2014, from www.painpolicy.wisc.edu/opioid-consumption-data Pallium India. (2012, March 19). Pallium India flagship program named WHO collaborating center. Retrieved November  2, 2014, from http://palliumindia.org/2012/03/ pallium-india-flagship-program-named-who-collaborating-center/

120  Palliative care Pandya, S. K. (2005). End-of-Life Decision Making in India. In R. H. Blank and J. C. Merrick (Eds.), End-of-Life Decision Making: Across-National Study (79–97). Cambridge, MA: MIT Press. Pasman, H., Brandt, H., Deliens, L., and Francke, A. (2009). Quality indicators for palliative care: A  systematic review. Journal of Pain and Symptom Management, 38(1), 145–56. Peberdy, A. (2000). Spiritual Care for Dying People. In D. Dickenson, M. Johnson and J. Katz (Eds.), Death, Dying and Bereavement (pp. 73–81). London: Sage Publications. Percot, M. (2006). Indian nurses in the gulf: Two generations of female migration. South Asia Research, 26(1), 41–62. Planning Commsision of India. (2011). High Level Expert Group Report on Universal Health Coverage for India. New Delhi: Government of India. Planning Commission of India. (2012). High level Expert Group Report on Universal Health Coverage for India. Retrieved from www.planningcommission.nic.in/reports/ genrep/rep_uhc2111.pdf Planning Commission of India. (2013). Press Note on Poverty Estimate 2011–12. New Delhi: Government of India. Post, P. (2007). Mobile Health Care for Homeless People: Using Vehicles to Extend Care. Nashville: National Health Care for the Homeless Council. Pradhan, S. (2010). Cancer management at the regional cancer centre in Orissa (Unpublished doctoral dissertation). IIT Kharagpur, West Bengal. Rabow, M. (2014). Chemotherapy at the end of life. British Medical Journal, 348, 1529. Raghavan, B., Palat, G., and Rajagopal, M. (2005). Are our patients getting palliative care too late? An audit. Indian Journal of Palliative Care, 11(2), 108–10. Robinson, L., Hughes, J., Daley, S., Keady, J., Ballard, C., and Volicer, L. (2005). End-oflife care and dementia. Reviews in Clinical Gerontolohy, 15(2), 135–48. Rumbold, B. (2011). Health Promoting Palliative Care and Dying in Old Age. In M. Gottand and C. Ingleton (Eds.), Living with Ageing and Dying (pp. 75–86). Oxford: Oxford University Press. Sachan, D. (2014). New government gears up for India’s health challenges. The Lancet, 383(9935), 2112. Salins, N. (2014). Time for change: Integrating palliative medicine to mainstream medicine. Indian Journal of Palliative Care, 20(2), 97. Seymour, J., Clark, D., and Philip, I. (2001). Palliative care and geriatric medicine: Shared concerns, shared challenges. Palliative Medicine, 15(4), 169–70. Sinclairs, P. (2007). Rethinking palliative care: A social role valorisation approach. Bristol, UK: Policy Press. Singer, P., and Bowman, K. (2002). Quality end-of-life care: A global perspective. BMC Palliative Care, 1(4), 1–10. Stjernswärd, J., Foley, K. M., and Ferris, F. D. (2007). Integrating palliative care into national policies. Journal of Pain and Symptom Management, 33(5), 514–20. Uemura, K. (2000). The terminal care in the elderly: A position statement from the Japan Geriatric Society. Nippon Ronen Igakkai Zasshi, 37(9), 719–20. United Nations. (2002). Political Declaration and Madrid International Plan of Action on Ageing. Madrid, Spain: United Nations. United Nations. (1983). Vienna International Plan of Action on Aging. New York: United Nations.

Palliative care 121 Unni, K., and Edasseri, D. (2012). A prospective survey of patient drop-outs in a palliative care setting. Indian Journal of Palliative Care, 18(1), 27. WHO. (2004). Palliative Care: Symptom Management and End-of-Life Care. Interim Guidelines for Firstlevel Facility Health Workers. Geneva: World Health Organisation. Zheng, L., Finucane, A., Oxenham, D., McLaughlin, P., McCutchio, H., and Murray, S. (2013). How Good Are We at Identifying Patients Who Need Palliative Care? Scotland: University of Edinburgh. Zurn, P., and Dumont, J.-C. (2008). Health workforce and international migration: Can New Zealand compete? OECD Health Working Paper, 33.

6 The failing empirics of biomedicine in dying matters

In the previous chapters, we have examined the environments of dying for the elderly in India – hospitals, family homes and palliative settings. We now revert to the case of Aruna Shanbaug once more because in addressing it, we find all three settings converging into one, so to speak. Aruna lay in Mumbai’s KEM hospital for 37 years and was in the biological age group of the elderly when she died. For her, the hospital had served as a home of sorts in terms of its familiarity since she belonged nowhere else; no relative had ever come to visit or claim Aruna. It is at the hospital that she received the most sensitive palliative care by the nurses, many of whom knew her as a colleague. Aruna symbolizes what empathetic care means and what a caring staff can do to humanize dying in hospitals. But this still does not deflect attention from more serious issues, such as, What were the elderly Aruna’s own needs and concerns in life? How did she experience her dying? Did she die a good death? On March 2011, the Supreme Court of India ruled out active euthanasia in the case of Aruna Ramchandra Shanbaug vs. Union of India (Writ petition no. 115 of 2009), citing it as criminal offense.1 Nevertheless, the court rendered a landmark judgment approving passive euthanasia subject to certain safeguards and conditions. Passive euthanasia involves withholding of medical treatment or withholding life support system for continuance of life, e.g., withholding of antibiotics where without doing it the patient is likely to die or removing the heart-lung machine from a patient in a comatose condition. Passive euthanasia is legal even without legislation provided certain conditions and safeguards are maintained (vide para 39 of SCC in Aruna’s case). The core point of distinction between active and passive euthanasia as noted by the Supreme Court is that in active euthanasia, something is done to end the patient’s life while in passive euthanasia, something is not done that would have preserved the patient’s life. In other words, ‘the doctors are not actively killing anyone; they are simply not saving him.’ The court graphically said that while we usually applaud someone who saves another person’s life, we do not normally condemn someone for failing to do so. While one can debate whether active euthanasia should be legal, there cannot be any doubt about passive euthanasia as ‘you cannot prosecute someone for failing to save a life.’ What complicated the issue in Aruna’s case is the fact that hers was a case of a nonvoluntary type since she was in a persistent vegetative state, i.e., unaware of self and environment. So the substituted judgment test could

The failing empirics of biomedicine  123 not be used because there was no clear evidence of her preferences when she was ‘competent.’ However, the nurses attending to her felt that Aruna responded to situations – a meal of chicken made her happy while overcrowded days got her agitated, emotions that sustained a caring attitude and justified overruling Physician Assisted Suicide (PAS) and Active Euthanasia. But what if the same arguments were turned around to ask, Did not a ‘sentient’ being who was pinned to bed for years after a brutal rape deserve at least mercy in dying? Past 65 years of age, did her case not merit a fresh reconsideration when she was aging and there were no signs of her ever coming out of her irreversible condition? The unresolved questions about Aruna figure similarly for millions of elderly in India who are dying a slow death, though not with such brutal tragic histories. Some are in fact dying for years with declining cognitive capacities involving variety of dementias, some with losses associated with declining physical conditions like breathlessness. They appear like Aruna in that they are incapable of reasoned decision-making. And even if they were, the medical structures to support patient autonomy are simply not present in India. Without entering into the endless ethical, legal and medical aspects of international debates questioning the validity of the distinction between active and passive euthanasia (cf. Singer,1993) or whether the aged need to be isolated as a special case for such interventions (Battin, 1987; Francis and Smeeding, 1987), it would be prudent to ask, Could euthanasia for the dying Aruna (and many elderly experiencing a prolonged painful dying) be also argued from the standpoint of resource optimization? What are the consequences of rising health care costs for the public sector hospital? If costs were central to decision-making for a government that is already resource-strapped and struggling for distributive justice, would it have reconsidered her case more seriously? And would this have served as compelling evidence against life prolongation, whether by aggressive treatment or palliative care, the latter would have prolonged dying anyway? Does not one bed in a government hospital occupied for years by dying elderly deprive many others for whom living a normal span of life is necessary? Could the principle of maximization of benefits be invoked under such circumstances so that health care resources are distributed in a way that would benefit the larger population? Thus, resources freed from overtreating Aruna could have been diverted to other people who might have needed it more. In fact, in the 1980s, the Bombay Municipal Corporation did try twice to shift Aruna outside the hospital in order to free the bed she was occupying but acquiesced to demands of the nursing staff after growing protests (Times of India, 2015). In fact, such questions involving rationing strategies are being raised globally since the Jack Kevorkian2 days with the growing realization that medical ethics and medical economics are two sides of the same coin (Mathews, 1998). It is being argued that if countless people suffer while resources are spent on patients who can never really live an interactive life, a serious economic case for PAS and euthanasia needs to be made. But this is not crass utilitarian ethics; utilitarianism needs to be judiciously used where patient conceptions of life and death and issues of quality of living (and dying) support such decisions. In Aruna’s case, it

124  The failing empirics of biomedicine certainly does. So is the case with many dying elderly for whom some reasonable course of action and response is awaited to ease them from the pangs of a slow, painful dying, often stretching for years. Passive euthanasia would not serve their purpose; they need something more to help them (Times of India, 2014). In any case, the term passive euthanasia has been considered by some doctors in India as complicating the matter further and as being no longer used in the medical or legal world. Dr. Mani in an interview considers the term euthanasia as problematic and suggests replacing it with end-of-life decisions (Nagarajan, 2014). In this ongoing debate, it would be important to remind ourselves once again of Callahan’s arguments in the U.S. for setting the limit of medical treatment for the elderly population at a cut-off point of 70 to 80 years. Although instigating to the world of medicine, the compelling evidence of escalating cost of Medicare in his country seems to lend support to the arguments. An analysis based on data from a 5 percent sample of Medicare claims from 2000 to 2011 shows that Medicare spending per person rose steadily with age, more than doubled between ages 70 and 95 in 2011 and peaked at age 96 before declining for the relatively small number of beneficiaries at relatively older ages. As adults live into their eighties and beyond, there is a greater likelihood of emergency department visits and inpatient hospitalizations as well as higher Medicare spending for inpatient hospital, skilled nursing facility and home health services. Thirty-three percent of total Medicare expenditure was spent on people aged 80 years and older who comprised 24 percent of the Medicare population. In contrast, beneficiaries between the ages of 65 and 69 comprised 26 percent of the traditional Medicare population, but just 15  percent of total Medicare spending. Average Medicare per capita spending doubled between the age 70 ($7,566) and age 96 ($16,145). In 2011, Medicare per capita spending on hospital inpatient services increased more than 2.5 times from $1,848 among 66-year-olds to $4,799 among 89-year-olds before declining among older beneficiaries. Medicare per capita spending on skilled nursing facility services increased by more than 50 percent (from $2,043 to $3,149) while per capita spending on hospice tripled (from $706 to $2,299) (Neuman, 2015). Despite the rising expenditure, the U.S. government is neither able to provide fully the health care expenditure for the elderly population nor ensure favorable outcomes. The pattern of increasing per-capita spending until beneficiaries are in their mid-nineties also raises questions as to whether beneficiaries are actually getting the appropriate mix of services as they age and whether more could be done to improve the management and delivery of medical care for them. In fact, despite all measures, dying seems to be getting more difficult, and many elderly fear a painful death entangled in invasive tubes and machines – the technological, medicalized dying. Some suspect that the very high suicide rates in the older population in many advanced countries may be partly due to the concern that they would be unable to stop treatment if hospitalized and would become prisoners of technology. In other words, the fear of living thus looms larger than dying. Such fears have been compelling physicians to take a serious look at the futility of treatment. But determining futility requires medical consensus, which is not easy to come to. Often delays in assessing futility in hospitals actually impede

The failing empirics of biomedicine  125 care in the last few hours of dying (Ellershaw, Neuberger and Ward, 2003). There are often varying perceptions of futility among different cadre of health professionals, and some even impose treatment on elderly prompted by a ‘duty of care.’ This is well illustrated in a blog posted by David Lock (2013) in the BMJ blog site. Lock narrates an incident that described how an autonomous decision made by a cognitively coherent elderly lady, Mrs. R, not to be kept alive artificially was overridden by care staff who erroneously equated their ‘duty of care’ with the duty to administer treatment. In this case, Mrs. R, in her late eighties, lost cognitive capacity due to dementia, stroke and other age-related comorbidities. Respecting her wish to die a nonmedicalized death, the lady was transferred from hospital to a care home to die a peaceful death. However, at the care home, when Mrs. R developed breathing difficulty, the care staff tried to actively treat her. Her DNR order was not known to the care staff, and her daughter and the consultant who witnessed her order were not present at the odd hour. So when her labored breathing did not improve, the care staff called for an ambulance to transfer the lady back to the hospital. Mrs. R’s daughter strongly objected against the care home for not letting her mother die in peace. When the ambulance staff arrived, there was a heated and somewhat unpleasant standoff between Mrs. R’s daughter and the ambulance care staff. She attempted to prevent ambulance staff from actively treating her mother and transferring her back to hospital. Amidst all this chaos, Mrs. R died. The ambulance staff called the police, and the place was declared a crime scene. Mrs. R’s daughter was interviewed by the police for the suspected crime of assisting a suicide because she had refused to permit the ambulance staff to administer treatment to her mother. Later, when shown the DNR documents, the ambulance staff accepted and justified the daughter’s stance. The police also accepted that no crime had been committed. Locke finds the unfortunate death of Mrs. R as imparting several lessons. The incident shows that the hospital discharge summary needed to prepare a care plan that clearly explained treatments that should and should not be administered. For the GPs who operate the care homes and the ambulance staff, Locke recommends evaluating an ‘emergency treatment’ plan in accordance with patient’s best interest. At times, caregivers need to swerve from their default position of providing medical treatment. In summary, the incident goes beyond advocating DNR. It indicates that provision of DNR orders, although impressive, is often not effective in upholding patient’s autonomy. It makes an urgent call for sensitivity and informed view among the caregivers to discern treatments that are likely to benefit a patient from those that are medically futile and not in accordance with a patient’s wishes. Ironically, the duty to care is often mechanical in nature and fails where it is needed most  – in tackling suffering for those with chronic illnesses and slow, prolonged dying. Internationally, the curative potential of biomedicine has now been found to be hopelessly inadequate for elderly and dying people. Since the SUPPORT study in 1995,3 the biomedical concern has been on treating pain and promoting DNR orders; however, conceptually, a very small leap has been made to understand suffering. This may be due to the fact that the central tenet of biomedical epistemology rests on the assumption that all knowledge is objective

126  The failing empirics of biomedicine (Kleinman, 1995; Cassel, 1991;Illich, 1975). Kleinman highlights biomedicine’s extreme insistence on materialism as the grounds of knowledge and discomfort with dialectical modes of thought. This has resulted in a particular way of looking at a body as a material entity, which in turn marginalizes the patient’s suffering. The latter has no objective measure; it predominantly concerns subjective feelings and emotions. But medical anthropologists show that suffering is much more expansive than pain. It goes beyond unpleasant sensations or distressing symptoms that doctors and nurses handle. Perceived helplessness and exhaustion of coping resources are key elements of suffering (Gavrin and Chapman, 1995). In dying patients, it encompasses anguish, terror and hopelessness that they experience. Cassel (1982) suggests that a symptom or feeling becomes suffering when people perceive it as a threat to their continued existence, not merely to their lives but their integrity as persons. Such perceptions may have significant emotional and spiritual dimensions related to self-image, family relationships, past experiences, caregiver attitudes and other circumstances of a patient’s life (Byock, 1997). However, the empiric of biomedicine marginalizes all these due to its excessive concern with the body as merely a materialistic entity. Longino and Murphy (1995) show that the assumptions of the biomedical model are invariably violated as persons become older; most health problems are then not directly related to physiology. In this context, they find Kleinman’s distinction between illness and disease to be especially important. Chronic and degenerative problems cannot be treated as diseases; aches and pains are implicated in a matrix of social and cultural conditions and difficulties in managing the environment, emotional crisis, family relationships and so on as one ages. Illness thus requires a different paradigm of understanding involving psychosocial issues, a field or constellation, whereby the physiological body is understood within an existential field. It also requires establishing experience as the center of medicine. This alternative way of framing medical problems is especially needed in end-of-life care, which requires new levels of inclusion and expansion of theories of causality to include even strange variables pooh-poohed by medical science. Deathbed phenomena and visions and near-death experiences  (NDE)  are paranormal  experiences of the dying that need greater inclusion and explanation – psychological, and transcendental. Nuland (1996) feels that the concern with the physical self and the pathophysiology of the disease so keeps the physician involved in the Riddle of the Disease that the problem of relieving human tragedy often takes a backseat. Narrating his experience in the medical school, he realized that by the time he was a senior, he no longer thought that the greatest good was the relief of human suffering; he became fascinated by matters of diagnosis and therapy instead. Hinshaw (2002) in an attempt to reclaim the spiritual dimension in dying feels that spiritual distress is at the core of suffering. There is a threat of disintegration and loss of integrity. Suffering can happen in relation to a transcendent source of meaning or any other aspect like the relation with body, family, group or social roles. Physicians tend to focus only on a narrow range of issues while patients and families tend to view endof-life within these broader psychosocial and spiritual needs (Steinhauser et al.,

The failing empirics of biomedicine 127 2000; Singer, Martin and Kelner, 1999). Singer in his exploration as to what people want during their end-of-life finds that in addition to relief from pain, being with family and friends and spirituality are important concerns. Preserving one’s dignity and being a burden on others weigh heavily on people’s minds. In an insightful empirical research in two care homes in London, Hall, Longhurst and Higginson (2009) suggest an important dimension of ‘dignity’ among elderly. It is not the approaching death that makes them anxious or the medical uncertainty or the failing health they sometimes jocundly dismiss. They are more worried about their failing capacity to carry out their daily living and crumbling cognitive senses. Proulx and Jacelon (2004), in an attempt to understand the notion of dignity among the dying, find that there is a societal pressure for being a good patient. However, what is important is a good death involving issues of dignity that incorporate not only the internal aspects of intrinsic, unconditional qualities of human worth, but also the external qualities of physical comfort, autonomy, meaning, usefulness, preparedness and interpersonal connection. Much of this is unattainable in hospitals, and Spiro’s (1996) frank observations on hospital dying appear to be relevant in major parts of the world even today. He writes, Few can turn quietly to the wall to go peacefully. For one thing, hospitals are too expensive a place to await a quiet death. For another, we doctors and nurses are not good at waiting. Our house staff is young and confident, eager to prove their mettle. In intensive care units the dying find no rest, but are kept in motion by machines blowing up their lungs and beating their hearts; electrical connections sometimes seem more important than the bodies they serve. There are few last words from dying patients because most have tubes in their throats; the staffs are too busy shouting orders to hear them anyway. There hardly seems room in these crowded cubicles for the rest that the Angel of Death brings. The image of Prometheus, the eagle gnawing at his eternal liver, might serve as a more fitting emblem. (Spiro, 1996: p. xvii) It is understandable, therefore, that neglect of the underlying meanings of suffering have considerably affected biomedicine’s success in arriving at a good, humanistic end-of-life care plan for the elderly as well as in resolving controversial issues on aid-in-dying. Although the most widely supported justification for PAS and euthanasia is mercy for intolerable pain, fear of lost dignity and other issues mentioned above are also important. The dying discourses have also failed to generate age-specific and nuanced meanings of autonomy, choice and control among the elderly, many of whom are too incapacitated to exert their choices or appreciate these concepts that have relevance for a younger cohort. Equally problematic has been the biomedical conceptualization of death as a physiological event – merely a moment in time rather than as a process. Death is considered to occur with the last breath of life and the entire focus is to prevent it. Doubts center around medical definitions, criteria and tests for postponing death. Overall, there is little physician training in acceptance of human finitude; it is mostly considered

128  The failing empirics of biomedicine as a professional failure that always needs to be hidden – an idea hugely responsible for the persistent avoidance of issues where the doctor has to play an active role as in euthanasia or PAS. A  recent survey among 1,465 Asian physicians spread over 466 ICUs and 16 countries found that nearly 70 percent were said to withhold treatment when there is no chance for recovery, and 20 percent were said to withdraw treatment. A small 2 percent of the physicians were said to administer large doses of morphine and barbiturates to hasten death (Phua et al., 2015). As far as PASs are concerned, Switzerland has emerged as a favorite place for people worldwide who visit the country for terminating life. A recent study conducted by Gauthier, Mausbach, Reisch and Bartsch (2015) finds that within a period of four years (2008 to 2012), there were around 600 cases of assisted suicides of which 150 to 200 were tourists from Germany, France and the U.K. Canada4 is the most recent entry among other countries – Switzerland and New Mexico, Oregon, Vermont, Washington and Montana of the United States – where PAS is permissible. Despite such acceptance of life-terminating strategies, there is uneasiness among physicians in revealing truth about their life-limiting decisions. This can be exemplified with a survey done by Farber et al. (2006) to understand physicians’ view on life-limiting decisions involving withholding and withdrawing of treatment. Of the 1,000 American internists targeted for the survey, only 407 returned a completed questionnaire, thereby maintaining secrecy around these issues. However, considering its high prevalence, the debate at this point of time needs to veer away from whether we should legalize euthanasia or not but to a clearer assessment of why some modern societies, including India, continue to resist it. While slippery slopes are difficult to avoid, it goes without saying that resistance is likely to be strongest in those societies where health systems are weak and are characterized by lack of trusting relationships and transparency in health establishments. Only those that support mature, honest healing relations can do justice to the dying.

Death and dying in the local biomedical cultural landscape Presently, the local culture of biomedicine in India is characterized by poor organizational structure, weak financing policy and governance. The traditional paternalistic doctor-patient relationship is fast eroding and so also is the element of trust. In a study in Pune involving mostly patients from urban areas, while physician-patient concordance and patient enablement, i.e., patients’ ability to cope with illness after consultation were both around 85 percent, trust in the physician was just above 60 percent and constituted the weakest link in doctor-patient relationship (Banerjee and Sanyal, 2012). Women patients tended to have significantly lower trust (50 percent) in their physicians than male patients (75 percent). There are several cases of allegations of medical negligence that also reveal lack of trust as well as poor system functioning. A study conducted using Delhi District Consumer Dispute Redressal Commission’s judgments of alleged medical negligence cases for the year 2009 to 2014 showed several allegations attributed to degree of damage (physical disability and suffering) and high cost of treatment for surgical interventions (Yadav and Rastogi, 2015). According to a 2013 study – the

The failing empirics of biomedicine  129 Global Burden of Unsafe Medical Care – India records approximately 5.2 million cases of adverse effects of medical injuries a year, ranging from incorrect prescription, wrong dose, wrong patient, wrong surgery and wrong time to wrong drug. Approximately 3 million years of healthy life are lost in India each year due to injuries and unsafe medical care (see Jha et al., 2013). Death and dying in India takes place within such a weak therapeutic relationship characterized by lack of trust and poor doctor-patient communication. The situation is made worse by biomedicine’s inability to adapt itself to the Indian cultural ethos. Indian conception of the body, life and death are largely dismissed and replaced by Western views that form the basis of biomedical knowledge. While the Western construction of the body based on Cartesian dualism somehow lends credence to the growing scientific medical technical rationality, it nevertheless fails to give solace to the dying. It may be mentioned that death, though a physiological phenomenon, is imbued with deep cultural meanings. Most societies have evolved their own cultural constructions and culturally sanctioned methods of death and dying, particularly with respect to frail and elderly people. Taking a look at developing societies, some scholars (Seale, 2000; Justice, 1997) find general dependency on medically delivered solutions deeply problematic. So far, biomedicine, including biomedically oriented distinct new specialties like geriatrics and palliative medicine (the latter remains ambiguously both within and outside it) have failed to help Indians to cope with the reality of dying in old age. It may be mentioned that although from the second half of twentieth century visible changes have taken place in Western relationship with mortality as a result of which death denial, avoidance, fear and grief have led to increasing medicalization of death in hospitals, in recent times a countermovement to demedicalize death has taken place with greater openness toward issues and concerns of dying. Adequate long-term structures for care and humanistic care plans have been evolved to deal with the dying rather than sequestrate them in hospitals wards. Unfortunately, this trend seems to be reversed in India. Although the ancient Indian civilization has long supported a greater openness and acceptance of death as a natural phenomenon, modern India evinces a death-negating attitude borne out of its dependence on biomedicine, with the result that many are left dying in the technological wasteland of intensive care units. In other words, while developed countries are trying hard to demedicalize death, India seems to be encouraging hospital deaths of the elderly. But high cost and severe time pressures in chaotic clinical settings of India leave little place for comfort care by doctors and nurses. Poor development of palliative medicine, hospices and other Long Term Care establishments shuts out the possibility of alternative caring options for majority. There is also little data and cultural input to guide and clarify the ethical and legal arguments surrounding mercy killing with the result that cases like that of Aruna have to be debated using English and American case law. It is not surprising, therefore, that the case proceeding of Aruna Shanbaug vs. Indian Union and Others on 7 March 2011 drew insights from Western cases of Quinlan, Conroy and Airedale to base its decision for ruling out the possibility of legalizing active euthanasia in India.

130  The failing empirics of biomedicine The tragedy of dying in India is illustrated in a blog by Jo Chopra (2015), who makes a comparative assessment of the dignified death of his loved ones in America, Dubai and the mismanaged ending of his aunt in India. His depiction of his aunt’s death brings out the glaring inadequacy of a biomedically oriented health system. He writes that not only are most hospitals abysmal in quality and affordability and many nurses and doctors are callous and lacking in any kind of bedside manner, there is also a reluctance to discuss or even acknowledge death, even when it is staring us in the face. The dying person must be protected at all costs from any awareness of her condition in India. This makes it difficult, if not impossible, to imbibe the spirit of projects like ‘The Conversation’ initiated by Gawande (2015) and ‘Death café’ that are dedicated to help people engage with dying issues and talk about their wishes for end-of-life care. Jo’s aunt was rushed to the hospital after she had a stroke. The emergency doctor on duty seemed incapable of making quick medical decisions and afraid of contacting the attending physician. Although the neurologist was on rounds, his phone was switched off. Precious hours were thus lost and the ‘window of opportunity’ closed. For the next few days, Jo’s family helplessly watched their aunt lie in a comatose condition in the ICU with a feeding tube inserted and a drip set up without the family’s consent. In fact, they were allowed limited access to the ICU for fear of ‘infection.’ Paradoxically, the hospital itself was dirty. Even though the doctors considered her condition to be hopeless, they could not officially discharge her. Then, over the next few days, with long-distance support from family doctors and hospice team from the U.S., Jo and his relatives decided to make Auntie’s final journey a tribute to her long life of independence and dignity. Friends and relatives came to whisper messages of love and comfort, and a granddaughter slept beside her every night. Trained in pain management, Jo secretly procured medicines from a ‘sympathetic’ local doctor. The hospice team guided him and his traumatized family and helped them to accept death. When Jo’s auntie finally slipped away, they felt it was right and natural. Jo pondered as how difficult it would have been if his family had lacked the support of a hospice team. Jo’s auntie would possibly be one among countless Indians who die alone in an ICU in an overcrowded, ‘smelly’ corridor far from family and friends. He advocates hospice care as an inexpensive and simple approach requiring compassionate knowledge and willingness to accompany a dying person on the final journey in a spirit of openness and trust. The insensitivity toward the dying in India is compounded by absence of culture-specific data on dying elderly. Do they like to enlist or reject biomedical help when close to life’s ending? How do elderly themselves wish to die? What are their own expectations and perceptions of life when they face end-of-life situations? It is reasonable to expect that those who in their life course have suffered from different losses – job loss, loss of bodily functions, declining hearing and vision – may have perceptions that are likely to be different. Amma, in her nineties, equates her old age with sheer indignity and dependence, irrespective of whether she is cared for in home or in the hospital. As a young woman,

The failing empirics of biomedicine  131 she had learned many skills – reading, writing and even driving. By her midnineties, all were rendered redundant and useless because of her frail health. With her hearing and vision both impaired and motor reflexes extremely slow, she became dependent on her son and daughter-in-law with whom she, unfortunately, shared a very strained relationship. Every time one met her, she would quote a single line of wisdom borrowed from an ancient saying but now was part of her own lived experience: Paradhin such sapnohe nahi (‘A life of dependence cannot bring joy by any stretch of imagination’). For another 80-year-old widow who stayed with her son, the sheer fatigue of living a life on the bed made her yearn for death. She had pulled down a huge clock from the wall and placed it by her side on the bed (a strange companion!) to suit her failing vision. Her life was spent watching the hand of the clock tick from midnight to seven in the morning when everyone else slept. Then, after a couple of hours, she would repeat the counting again – tick, tick, tick. Time stood still for her as insomnia and an aching skeleton of a body excluded her from all social participation in daily life. She had suffered at least three serious falls, and the anxiety over another impending one discouraged her from even having a hearty meal, lest her weak digestive system prompted hurried use of the toilet without her walker and home-aide. Then, there are cases when upon being discharged/turned down by hospitals, dying at home becomes an unbearable agony for the elderly and their caregivers. In many resource-strapped households where more urgent issues of sheer survival demand great energy and time, where hungry mouths have to be fed and suckling babies quieted, the living find it difficult to accommodate the dying elderly. In such situations, biomedicine’s ability to develop and encourage people’s own capacity to care and heal the dying without external assistance from the government or civil society organizations is poor. The agony of elder dying is recounted by one of the volunteers who went on a home-based palliative visit in the city of Kolkata. Dying old at home can be abusive Dr. M (75 years), an ex-physician, and his wife (around 70 years) were found tied to their bed with cords (both hands and legs were tied) in separate rooms. The old man was suffering from kidney and various other age-related issues while his wife was suffering from breast cancer. He was in a state of depression while his wife was in a delirium. Both were under the care of their son and daughter-in-law and a paid carer but were poorly nursed. The palliative team noticed that the old lady’s wounds were not cleaned and dressed properly, and she had developed a bedsore. The old man was equally neglected but was not willing to share his sorrows with the palliative team in the presence of his son and daughter-in-law. There was an undercurrent of conflict and hostility between the sick elderly and their carers. The couple’s daughter, who was married and resided in a different locality, had organized the home visit.

132  The failing empirics of biomedicine The daughter-in-law confessed that she found the burden of continuous caregiving for two severely sick persons as very challenging, exhaustive and at times depressing and stressful. She also tried to rationalize the act of strapping her in-laws to the bed as part of a risk-avoiding strategy. She appeared unfamiliar with caring tasks and was also somewhat frustrated on account of her poor care skills. Comparing the sad, undignified dying of Dr. M and his wife at home, it appears that the withering Aruna Shanbaug had at least professional caregivers around her in the hospital. Had she been dying a prolonged death at home, it is probable that she might have been exposed to similar neglect and abuse. Many elderly in India, unable to draw sufficient help from biomedical establishments, lack an inner equilibrium and well-being and find the shortest way out through suicide. Some, in fact, embrace death by overdosing, poisoning and jumping. When the elderly are not killing themselves, caregivers kill them often out of loving desperation and sheer frustration of not being able to meet the demands of caregiving due to rising health and social costs. The young family members of Virudhunagar – a small industrial town in southern Tamil Nadu – push their infirm elderly dependents to death. Thalaikoothal it seems is a long-established practice in many other southern districts in Tamil Nadu. Elderly, often bedridden and terminally-ill, are given a ceremonial oil bath followed by tender coconut water in the belief that it would induce pneumonia, leading to their eventual death (Magnier, 2013). It is not uncommon that some drugs may also be added to hasten death! Is death not a reasoned choice for these elderly and their caregivers? However horrendous our reactions to such actions be, nevertheless they do stem from reasoned decision-making and judgment of competence to forego life and may well be considered as the last rational act of many autonomous elders and their caregivers. Considered thus, even Thalaikoothal cease to reflect the callousness and indifference of society or even the selfishness of younger generations hastening the death of their elderly. Should we not consider these cases as suggesting the need to move away from medically dependent solutions in the last phase of life – solutions we have tried to depict as clearly oppressive in many cases or even as legitimate methods of dealing with death when other biomedically dominated solutions are unavailable? But there are many families who are not part of the death-performing culture who wait in sheer agony for the death of their elderly while the latter desperately cling to their lives. Biomedicine in India, unlike its counterpart in the West, has little to offer to them; with no alternative care structures around, caring loses its humanitarian touch and becomes burdensome too. An educated, well-placed professional recounted the story of how his grandmother refused to die. My grandmother refuses to die At 88, her birthday is a week away. Three years back, we celebrated it for the last time, when I was accidentally around and could meet her briefly for a few

The failing empirics of biomedicine  133 minutes. That was also perhaps one of the last few occasions when we carried on a meaningful, coherent conversation where I could share with her and she could relate to her overwhelming loneliness, the loss all around her and the vast emptiness that was just beyond her cataract-coated eyes. My grandfather lost his will to live when he was 82. Behind him were two dead sons. My second uncle had not been able to face life beyond his 38 years or the hormone-imbalanced, bearded face of his wife. He preferred a quick exit with a yellow nylon rope. My youngest uncle died of liver cancer and left behind two young kids and a devoted wife, who was soon wedded to the old couple for the rest of their lives. My grandfather who did not believe in a god, who tearlessly saw the bodies of his two dead sons being carried away, lost his smile and stared into blank space. The postcards we used to send one another lost their ways and came far in between. When Dadu slipped and broke his femur, he refused to heal. There was nothing to live for. But my grandmother lived on. Fragile of bones, delicate and a sensitive writer, she continued to write with her cataract-stricken eyes with my gifts of notebooks, pens, emergency lights and magnifying glasses. On my visits to her, she would read one of her pieces, sometimes for the second or the third time, waiting for me to respond – like a child. Anxious that she might die any day, we compiled her pieces and brought out a book that she clung to like it were a toy. Then she broke her leg, and we waited for it all to end. When people know someone is dying, they fuss around her as if she is a bride or having a baby. Births and deaths, strangely, elicit similar reactions. Precious moments to cling to, for the days will pass quickly. There is as if the burden of memory to be carried on in the ritual of living. Stories to tell. How the baby used to smile or how the old woman was fading. Dramatized narratives to be told with a smile or a sigh. But that was not to be. The old woman clung on. We watched, first with wonder, then with dismay. The living slot only an allotted time for the dying. After that, the living have to get on with their jobs, the petty days that move on incessantly and endlessly with little time for thoughts. They lose all sympathy for the dying. Memories slotted for tales of dying revolt with irritation. Soon fond memories fade, for the dying has by now far exceeded her time like a delayed train at an insignificant railway station. My grandmother lost her memory, suffered from sodium deficiency, had a catheter inserted into her and roared and fretted and fumed. She refused to cooperate, and she refused to die. She ranted against her daughter-in-law, accused her of not feeding her, abused her and forgot all about it and started again. Recognized us or glared at us with unknown animal eyes. Decided to speak or reserved the right to silence for days and hours. Sank and rose again. Three days back when I left her bedside and kissed her forehead, the skin over her skull was cold, her nod of recognition clinical. The stories that held magic between us had bleached in memory. The little money that I push into my aunt’s hands for her have long lost its purpose and meaning  – a mere ritual. Just like my visits as I wait for her to die.

134  The failing empirics of biomedicine Many elderly, unable to come out of the radical, monopolistic onslaught of biomedical conception of death and dying, not only cling to their lives but also seek aggressive treatment in hospitals and eventually die entangled in tubes and machines. Few are willing to die a natural death these days; self-determination – an important feature of the Indic approach to dying – is lost. Implicit in our everincreasing attempt at professionalizing hospital settings and devising new care structures is the lost personal responsibility of dying well. In her book Graceful Exits: How Great Beings Die, Blackman cites many cases of spiritual masters of different faiths who made such exits without depending on biomedical means to manage their deaths – the lost art of dying, which was especially perfected in ancient India and still continues to be considered by a few as an adequate societal response to death in old age. The author speaks of masters who made conscious yogic withdrawal from the body, refused any major medical treatment and died absorbed in transcendental vision – calm, reposed with no struggle, spasm, pain or visible signs of death. The case of Sri Ramana Maharshi is especially illustrative. When the doctors suggested amputation of his arm above a cancerous tumor, the master asked them not to be alarmed and refused to mutilate the body. He was like a spectator watching the disease waste his body. The external self experienced ravaging effects of the disease, but the inner self was totally at peace and joyous. In other words, the master cultivated a readiness to die and embraced a death minimally mediated by professionals. Late in 1950, Shri Aurobindo too refused any major treatment or to exercise his own therapeutic power when he developed an extreme uremic condition that subsequently resulted in a deep coma. Many believe that the coma coexisted with a conscious yogic withdrawal of the body. Such readiness to die has been noticed till very recent times even amongst the not so spiritually inclined. Vatuk (1996) during his research in 1970s in India found that despite less than comfortable circumstances people seemed more equipped – cognitively and emotionally – to face the inevitability of aging, death and dying and ‘letting go’ of life deliberately and willingly. Parry (1981), too, noticed a preparation to die one’s own death – considered a ‘good death’ among the Hindus. In a recent personal visit to Kashi, several inmates of old-age homes like Mumuksha Bhavan appeared to have developed great resilience in the face of pain and suffering, had detached themselves from their near and dear ones and were living in isolation, single or as couple, preparing for their exit with no apparent anxiety over their failing health. The tragedy of modern dying in old age stems from the fact that we have ceded this right to the medical system, which is both alien and chaotic for most elderly in India.

Notes 1 Active euthanasia is illegal in India and a crime under section 302 or 304 of the Indian Penal code. The Constitution Bench of the Indian Supreme Court in Gian Kaur vs. State of Punjab, 1996(2) SCC 648 held that both euthanasia and assisted suicide are not lawful in India. The case proceeding of Aruna Shanbaug on 7 March 2011 that overruled the plea for euthanasia, however, acknowledged the pitiable condition of Aruna; her cognitive senses were minimal, she had no awareness about her surroundings, could not chew her food,

The failing empirics of biomedicine  135 neither was able to see nor hear. She could not communicate or express herself in any manner. The medical examination done on her following a writ petition filed by Pinky Virani on behalf of Aruna came up with a report that bore evidence of an excellent nursing care but could not confirm physiological and neurological functions. 2 Jack Kevorkian (1928–2011) was an American pathologist and a well-known euthanasia activist. He is remembered for publicly championing terminal patient’s right to die through physician-assisted suicide. It is widely believed that he assisted at least 130 patients to end their lives. He was often portrayed in the media as “Doctor Death” (Green, 2008). 3 The SUPPORT Study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) in USA had shocked the Americans by revealing that 50 percent of the thousands of patients in the five major tertiary care hospitals it studied were reported to have suffered moderate to severe pain at least 50 percent of the times during the last two to three days before they died. That the empirics of pain management fails was also conceded by the National Academy of Sciences, Institute of Medicine’s report on Pain and Disability, which showed that there can be no objective measure of pain – no pain thermometer – because the experience of pain is inseparable from personal perception and social influence. Emanuel (1998) candidly acknowledges that there has been, in fact, a discrepant development; one in which research and development in medicine moved ahead but progress in pain management lagged behind. Not much seems to have improved since his observation. 4 In a unanimous ruling, the Supreme Court on 6 February 2015 said that the existing law should be amended to allow doctors to help patients who are suffering from grievous and irremediable medical conditions to die. The court has given the Parliament a year to respond with a new law. It considers an individual’s response to a grievous and irremediable medical condition a matter critical to their dignity and autonomy.

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7 End-of-life care Retrieving death from the zone of obscurity

June 2013. Disaster at Uttarakhand. The holiest of all holy pilgrim centers of the Hindus in Kedarnath devastated by floods and landslides. Hundreds killed and thousands missing. Many of them were elderly who died a slow death of hunger and starvation and were perhaps devoured by the Himalayan beasts even before the Indian army could rescue them. What made the story brutally poignant was that among those who took shelter inside the eighth-century temple, many hundreds died much to the embarrassment of devout Hindus. Anxious family members hoping for the return of their parents spoke of limited stocks of medicines on them. The media had photos of elderly – ill and tired, begging the jawans to help them jump the cue for a helicopter – lift back home. A perverse thought gripped the mind. Leaving aside the able-bodied and the kids, could this be constituted as a tragedy of sorts for the elderly? Or were they the chosen few for the great sacrificial offering at the altar of Lord Shiva? Many in their desperation and some in their wisdom would have asked for a merciful quick death before it really happened. What if the Lord had actually conceded their prayers with the faithful form of Nandi,1 untouched by the deluge, overseeing the cosmic tandava?2 Whatever the truth, it is evident that there was total unpreparedness for death as part of the Hindu pilgrimage and no readiness for the final exit – the sort of mind-set that makes the elderly so vulnerable in hospitals. The ancient Hindus who meditated atop the mountains in solitude and isolation (kaivalya) were cut off from the world and perhaps would have rejoiced their dream-end – quick and without pain and suffering. Convinced of the immortality of the soul, death of the body would not have been of much concern for the mas as well as for their loved ones. For others, who practiced renunciation in the Sanyasa phase of life, there would have already been preparation for such travails without food, water and, of course, the medicine kits. Some would have reached the high tops, physically and metaphorically; others would have withered away and lost in the silence, absorbed in the woody Himalayan ranges and the misty skies. Well, this need not, by any stretch of imagination, be the sort of ending that one would aspire for oneself or for our loved ones in modern India. And yet the tragedy (?) smacks of the total unpreparedness for loss, death and dying. The elderly Tirtha yatris of ancient India probably would have never thought of a safe

End-of-life care  139 journey back home.3 Pilgrimage was always in this sense a hazardous, dangerous enterprise (Fuller, 1992) as opposed to its modern version within a packaged tour. Interestingly, many pilgrim centers like Varanasi (also called Kashi), Allahabad (Prayag) and Gaya had a strong association with death, Kashi being even referred to as Muktishetra in Agastaya samhita (c. ad1200) (cf. Sarkar, 1887). Every pilgrim who embarked on a journey to Kashi and such places asserted the idea of Mukti from Janam Maran Chakra (i.e., liberation from the wheel of lives and deaths), and this involved a shift in consciousness from the transient nature of life to the more enduring and undying nature of Self. Modern India is witnessing the loss and demise of these meanings. The Uttarakhand tragedy brought to the surface an ongoing contradiction of sorts between the deeply ingrained cultural beliefs and the reality of an extremely medicalized death. This contradiction accounts for the misery of aging and dying in present times despite persistent efforts for an improved management of end-of-life care. In a way, the present text also provides a testimony to such intellectually constrained arguments geared toward the understanding of both body and its dissolution (i.e., death) as a physical reality alone, leaving aside deep cultural meanings of an immortal soul. But cultural meanings are important to endings, irrespective of the settings in which we find ourselves. In fact, the spirituality movement in medicine in the last two or three decades in the West incorporates perspectives that bear remarkable similarity to the Indian ancient wisdom. WHO strongly supports the need to integrate spiritual care during palliative and end-of-life care. Countries that have well-designed hospice care have adopted multiple strategies to assess spiritual needs. This ranges from using standard tools of assessment, such as Functional Assessment of Chronic Illness Therapy, Spiritual Well-being, Scale Religious Coping Mechanism (RCOPE), HOPE, etc., to simple approaches involved in talking freely with the dying one at the bedside. Other philosophical components of palliative medicine  – accepting the limits to cure, recognizing the inevitability of death and hence, embracing not denying it, experiencing the inner strength and feelings of liberation that come from such acceptance and providing holistic care – are elements also deeply ingrained in Indic tradition that seem to have been dismissed in our hurry to modernize ourselves. There is, therefore, a need to revive this philosophy of death and dying and care structures based on such alternatives. The Indic approach, it may be pointed out, is distinct from the orthodox JudeoChristian tradition, which considers death as an absolute offense to life and which forms the basis for entire biomedical knowledge that supports the modern medical system. Health workers, training programs, equipment, pay and incentives for medical staff are all oriented to keep life going and never to ‘let go’ of the body. Even in countries like India where death acceptance was once part of the culture, it has now become difficult to face it. Indian physicians trained in the Western paradigm continue to apply Western philosophical principles even when they operate in their own cultural settings that support a vastly different value system. Beneficence thus gets equated with saving life at any cost even when the patient is old and frail and his/her physical resources have dwindled to a point where

140  End-of-life care recovery is not possible. The consequence of such high-minded medical commitment has been detailed in chapter 3 as leading to entanglement in a technological web of tubes and machines with little regard to the quality of living as well as dying. Unfortunately, some elderly in India too support this form of dying since this is the only prevailing one they are attuned to. They so earnestly believe in this Western orientation to aging and dying that the influence of hospitals penetrates their home settings as well, transforming the home to a hospital. In other words, they gradually come to accept hospital procedures in resuscitating life and grow speculative over natural dying and care structures that support it. Modern India can merely lament the loss of the art of ‘letting go’ of life in the face of natural death, just as it mourns the demise of the craftsmanship of caring for the dying person. Both the elderly and their caregivers are anxious over the impending death, having little understanding of the undesirability of life-prolongation and no prior training in setting limits in accordance with the governing values of the ancient Indians. Family members grow overtly anxious and stressed, homes become unfamiliar with gadgets and medical devices, even the dying appear alien, compelling the hiring of professionally trained carers. At the root of this lies the anxiety to restore the person back to health with the power of modern medicine. As almost a consequence of this overgrown belief in medicine’s curative powers, alternative care settings for dying in India have never shaped due to low demand. Death whether in the hospital or in the home or even in the few newly introduced hospices and palliative centers is always an extraneous event, not linked to life, culture and philosophy. And sadly, it is mostly considered a tragedy, never a necessity; always denied, never justified. This is illustrated in a short study by Ghosh and Dey (2009) on the elderly of Kolkata with a sample from different socioeconomic groups. While failing health capacity bothered all elderly irrespective of their socioeconomic background, elderly from the poorer strata had an additional anxiety of being a burden on their family with advancing age. Despite this, none of the elderly from even poor strata were prepared to die (100  percent). They feared dying as much as the elderly who were financially well-off (97.5  percent). Further, the researchers found that they wished to live more and die late – as late as 70–80 years in contrast to the well-off group who felt 60–70 years was the best time to die. Elderly from poor families even performed religious rites to ward off death, whereas their richer counterparts engaged themselves in social services to overcome the fear of aging and dying. It is obvious then that a society so estranged from its cultural moorings would have people aging and dying poorly, and nothing could be more unfortunate and awkward given the fact that Indian civilization has been, unlike the West, deathaffirming rather than death-negating. Death was considered as an integral process of life, not as annihilation or destruction or reduction into nothingness. The best illustration of this is to be found in the Upanishadic teachings and in the Bhagvata Gita wherein Lord Krishna considers death of one’s physical body as inevitable and, therefore, not a cause of prolonged grief. Death assumes a new meaning from a deep understanding that the subtle dimension of the person (jiva) does not die at death; rather it takes on a new body while the eternal Self (atman) is birthless

End-of-life care  141 and deathless and cannot be destroyed. This philosophical understanding further encourages people to realize the eternal Self since such realization ensures merging with ultimate reality, or Brahmn. In many modern renderings of the Upanishadic doctrine, death is considered almost as a necessity of sorts, in some senses even fulfillment because eternal change of form is the sole immortality to which the finite living system can aspire and eternal change of experience, the sole infinity to which the finite mind involved in living body can attain (Aurobindo and Mother, 1959). Thus, whenever someone or something changes in state, then death takes place. Characterizing this, Filippi (1996) says that death (Mrtyu) is not opposed to life (jivan) but rather to birth. At present, this profound philosophical understanding remains mostly textual: it is at best excerpted and read out in funeral (Shradha) announcements and encoded on memorial walls. Rarely does it ensure socialization into the core Indic values of nonattachment to the body and its incorporation in the lived experience of the dying. In fact, most of our concerns in modern India centers around the gross body, dismissing the ancient Indian philosophical distinction between the gross and subtle body (lingasarira). The gross physical form of the body has no real existence on account of its changing character, impermanence and destruction with death. The soul – the permanent entity in the gross body – having enjoyed certain pleasures and desires leaves the gross body and manufactures another. The lingasarira is the one which after cremation accompanies the transmigrating spirit and is the essential link in the continuity of life and is not destroyed by the death of the individual but continues to activate it throughout until it merges with the Atman, the True Self (Swami Abhedananda, 1971). According to Sri Aurobindo, the soul takes birth each time, and each time a mind and life are formed out of the materials of universal Nature according to the soul’s past evolution and its need for the future. When the body is dissolved, the vital goes into the vital plane and remains there for a time, but after a time the vital sheath disappears. The last to dissolve is the mental sheath. Finally, the soul or psychic being retires into the psychic world to rest there till a new birth is close (Aurobindo and Mother, 1959). The idea of continuity ingrained in such conceptualization did not always ensure an anxiety-free old age. On the contrary, Hindu spiritual literature is also replete with references to suffering in old age, or jara  – a term derived from Panini’s Sanskrit root Jrs vayohanou, implying loss in period of life span. In fact, the Bhagvad Gita uses the underlying meanings of loss to actually invoke feelings of renunciation. Old age’s association with time (Kala) and fear (bhaya), both anxiety provoking, figure prominently in several other texts, as in the episode of Puranjana in the fourth skhanda of Srimad Bhagvatam and the Bhajgovindam strotra. But this anxiety itself has been a motivating force to take the auspicious path to the Self before the eventual loss of vitality takes place. This realization figures early in the young boy Nachiketa’s inquiry about the secret of death from Yama – the king of death (see Katha Upanishad translated by Whitney, 1890). However, Yayati, the indulgent king, had to trade his old age with one of his son’s youth (see Mahabharata-Adi Parva and also Bhagavata Purana) and endured pain

142  End-of-life care only to later realize that sensual pleasures enjoyed for even a ‘thousand years’ lead to futility and sense-pleasures, if not removed, are aggravated by indulgence. In strict adherence to this understanding, many ancient Indians practiced a life of restraint according to the ashramadharma. Many elderly finding their duties adequately fulfilled, body decaying with age and disease and life having no further appeal, preferred active dying by one of the sanctioned modes practiced by the sages. Without trying to put voluntary dying within the existing conceptualization of suicide (which evokes notions of violence to self), we find ‘conditions’ for such dying spelled out in the Manusmriti. These include incurable disease (beyond the possibility of the doctors’ cure), inability to perform daily hygiene (sauca) and loss of memory. Such attempts at willfully quitting life, despite upholding its sanctity, figure in the concept of Mahaprasthana in the Smritis  – the great journey as a path to liberation. In the epic Mahabharata, after the great battle of Kurukshetra, the Pandavas along with Draupadi went for Mahaprasthana, dying one by one on their way to the svarga. Mahabharata also records that Bhishma chose the time and manner of his dying. Called Svecchaamrityu / Icchamrityu, or self-willed death, it is one of 26 siddhis that form part of the Kundalini Yoga whereby the Yogi derives the power to die at will. More recent anthropological literature on death and dying in Benaras suggests the practice of ‘letting go’ of the body on the banks (ghats) of Benaras and annihilation of the body in the Kashi karvat temple existed in recent history. Such spiritual deaths were indeed an occasion for celebration since they exalted the dead to the world of Brahmn and freed them from sorrow and fear. In fact, many Hindu monks mastered the art of dying, which involved, in the first place, mastering the art of a good living (Swami Prabhananda, 2008). Others considered death as a sacrificial offering of the self to the God ensured that the offering be a complete act of renunciation with the help of a flawless body – an indicator of a flawless soul. They perfected the yogic route to conquering disease, pain and suffering till the very end and tried to attain yogic perfection, which bestows a power to exit one’s life willfully – the unique Indian art of dying. In fact, many trained themselves to die gracefully by not clinging to life endlessly. Long years of such training in self-denial and meditation made it easy to deny life-prolonging treatment, forgo food and water and weaken the body such that the vital breath may leave it easily. The yogic account of pain presents a fascinating multipronged philosophical strategy of facing death and its actual transcendence. Sage Patanjali in his Yoga Sutras clarifies that there is no distinction between pleasure and pain (cf. Woods, 1914). All is, as it were, painful on account of everything bringing pain either as consequence, or as anticipation of loss of happiness, or as fresh craving arising from impressions of happiness, and also as counteraction of qualities. We must therefore learn to control all the dualities – good-bad, heat-cold and all the pains of opposites – including that of pain and pleasure. Yoga also aids the actual transcendence of all bodily processes through control of sensory receptors, which have an effect similar to hypnosis. This idea finds a strong acceptance in more contemporary renditions of Yoga, which is strongly equated with mental concentration and restriction of the fluctuations (Vriti) of mind and calming of the

End-of-life care  143 affective states through regulation of breath and withdrawal of the sense organs. In a state of high concentration, consciousness (of an object), including that of the body, ceases (cf. Swami Vivekananda,1896). For those who reach such high levels of yogic concentration, the state of Samadhi is almost akin to being ‘bereft of the body.’ This facilitates wisdom (Prgynaa) wherein all fear of death dissolves, freeing the person from bondage and transporting to a state of nothingness, or alternatively, merging one’s identity with the whole (Purna), resulting in Moksha or liberation. Rested in such a state, the yogi not only conquers the dualities of nature (like pain and suffering) but also the will-to-live live (abhinivecha), considered as one of the five-fold hindrances to Yoga.4 In a living being, this craving for one’s self ceaselessly arises. ‘May I not cease to live,’ ‘May I live’ (bhuyasam). Although this craving is also nurtured by the wise, it is eradicated by knowledge achieved by spiritual practice (sadhana).

Dying outside the medical gaze: the cultural world of the dying in India Could there be a program for the aged and the dying in India that does justice to a person’s last journey in life without depending on medically sanctioned methods of tackling illness, disease, suffering and death? This is at the root of the query on aging and dying in India. Admittedly, this would be difficult under present circumstances where culture itself is undergoing drastic transformations and the power of modern medicine has begun to play an unquestionably important role in our lives. Few would dare to experiment with the Indic model at an individual level, however exciting it is philosophically speaking. At best, weaving the culture might involve the need to veer away from a single blanket policy that may govern dying to examining the full range of acceptable choices, some of which bear close resemblance to the ‘art’ mentioned earlier. The range need not be limited to active aging vs. disengagement (as per Indian scriptural pronouncements), euthanasia vs. palliative care, but could include other distinct choices and modes of ending life, upholding specific Indic values and preferences. Very surprisingly, during the course of the study, enormous variability in choices were found that suggest that some taken-for-granted notions like nursing and care-receiving do not comprise universal needs of all dying patients. Many elderly value their suffering in privacy and hate to be nursed to avoid feelings of dependence on others. In other words, ideally the exit has to be customized distinctly according to personal choice since autonomy is important to all endings. This would be clear if one were to scrutinize suicide practices among the young: there are distinct preferences and choices in the way the act is committed – by drowning, jumping, overmedication and so. It goes without saying that the issue of personal choice becomes stronger as people age. It thus becomes important for the government to respect the rights and sentiments of its citizens in the last lap of their life journey, particularly when the methods chosen are sanctioned by their religion. There are minority religious sects like the Jains, for instance, who opt for choices distinctly outside the medical framework, with many even foregoing medical treatment,

144  End-of-life care food and water as part of a consciously planned decision to end life. Santhara, as this practice is called, is not merely to overcome suffering or pain but is believed to help one attain salvation as well and is followed by both religious heads and ordinary householders. It represents a way of life and encompasses a way of dying as well. When a Jain feels that he/she has entered the final stage of life, with no meaningful work left to complete, he/she may seek the permission of friends, family and guru to take up the practice of Santhara. Once approved, the Jain is permitted to gradually give up food and liquids. During this time, the person must learn to give up all worldly attachments and make peace with death. Babulal Jain Ujjwal, editor of the Jain publication All India Jain Chaturmas Suchi, claims that the 2,000-year-old practice continues to be idealized as a graceful way to embrace death within the Jain community, and that every single day throughout the year a Jain somewhere in the country takes up this holy vow.5 Recently, the Samayaka Sangathan’s head, the 74-year-old Guru Amarchand Kasawan, gave up food and water after remaining ill for more than a month. Elsewhere, there are reports of even householders having embraced this form of dying. Sixty-year-old Shwetambar Jain woman Vimla Devi Bhansali died while on terminal fast in the Pink City, and 93-year-old Kaila Devi’s death in the old Walled City had the world’s media debating whether this could be construed as an infringement of rights of the elderly. Human rights activists and lawyers filed a public interest litigation denouncing Santhara as a social evil and pleaded for its consideration as suicide under Indian law, especially because it is the old people who usually resort to it, a majority of them being women. It is argued that allowing them to suffer without medical assistance, food and water is inhuman. In August  2015, the Rajasthan court’s Jaipur Bench ruled on public-interest litigation (PIL) filed in May 2006 against the practice. It held that Santhara would henceforth be treated as ‘suicide’ and accordingly, made punishable under the relevant sections – Section 309 (attempt to commit suicide) and Section 306 (abetment of suicide) of the Indian Penal Code. It made its absolute rejection of the Jain philosophy underlying the practice unequivocally clear. An appeal challenging the order has now been filed in the Supreme Court. Many have contested the simplistic, casual, superficial and perfunctory approach of the court and believe that the judgment has mixed up the philosophical origins of Santhara and its fundamental conceptual difference with suicide, sati or euthanasia (Singhvi, 2015). Santhara is best considered as a voluntary act of rational thinking and marks the beginning of a journey of understanding the inherently painful and flawed nature of earthly existence. It is an ultimate renunciation of life through a cheerful, stoic and positive outlook on death and has none of the depression, despair, anxiety and violence associated with suicide. Also missing is the passionate attachment to a departed relative associated with Sati. For millions of Jains in India, the public interest litigation and the court’s ruling was a direct violation of the Indian constitution’s guarantee of religious freedom in matters of life and death. Vishwanath (2015) laments that in an abortive act of comparative sociology, the ritual dignity of Santhara has been lost. In recent ethnographic writings of dying practices among the Hindus, voluntary forsaking of food and water is reported widely among the dying in Kashi (Justice, 1997).

End-of-life care  145 Many subaltern communities in modern India even today celebrate death of the elderly. Menon (2014) reports a festive funeral procession in Tamil Nadu bearing the corpse of an old man sitting upright on a wooden chair, spectacles perched on the tip of his nose. There was gaiety all around.6 It thus appears that an overreaction to elderly people’s deliberate choice in dying by refraining from food and water may be an unwarranted intrusion in their lives. A  paternalistic overprotection on the part of the State, overlooking the interface between culture and physiology, may be rather frustrating for some and may clearly conflict with the autonomy of the elderly, especially when the choice is made by those who are still competent. Understandably, the distinction between a competent and a noncompetent patient is often blurred in the case of the very old or demented people, but the cases cited above obviously do not belong to such a category. However, one needs to be on the guard that in a poor country the mantle of paternalism may also hide self-interests in keeping frail persons alive, especially when they are recipients of pension grants from the government, however frugal the amount may be, and the family’s survival depends on it. But overall, paternalistic overreaction in India is unfortunate and out of tune with the current medical understanding. Medical associations in the West are beginning to acknowledge the scientific fact that withdrawal of nutrition and hydration could be a humane way to die. The Dutch Medical Association, for instance, does not regard these as assisted suicide but considers them more akin to patients exercising their right to refuse life-prolonging treatment. New professional guidelines have been designed to ensure that such patients nevertheless have a right to appropriate care from their doctors (Sheldon, 2014). In any case, even if one does not subscribe to this viewpoint, it may still be easier to accept that individual decisions when they become a matter of public scrutiny, speak rather poorly of the way we die. Scholars (cf. McLean, 2000) have considered the emphasis on law in ethics as an outcome of extreme medicalization of death – an overdependence on the expertise of the doctor and underrepresentation of other value systems. It goes without saying that in countries with weak judicial systems, such conjoining of law with medicine can prove to be a deadly phenomenon. Lomasky (1994) accepts the position that the state does have legitimate interests in such legal matters – preventing homicide, establishing standards in informed consent and contractual obligations. But beyond staking out legal terrains, within which concerned parties can take their bearing, governments may move in either of the two opposing directions – they can issue detailed regulations pertaining to the application of life-saving technology, or within broad guidelines, return ­decision-making prerogatives to the individual patients, their families and physicians. For two reasons, the author prefers the latter course since individual decisions promote autonomy. He argues that persons differ in their judgments concerning conditions under which life is no longer worth living. They also vary in their willingness to forego possible satisfactions in life for the sake of securing incremental health gains. Given such variations, a liberal society is one that values the ability of individuals to direct their own lives and allows people to determine for themselves what course their medical treatment should take place. In other

146  End-of-life care words, all citizens have a fundamental stake in how they and their loved ones will die. Admittedly, decisions do not come easily under the best of the circumstances. But he warns that the burden would be exacerbated if matters of personal decision were transformed into public policy concerns. Lomasky’s arguments may have a direct bearing in India since excessive governmental role in mandating standards may pose the same danger of political disruptions that were experienced in the case of publicly funded family planning strategies in India during the Political Emergency (1975–77), which is still remembered with dread for widespread compulsory sterilizations to limit population growth. As opposed to this apparent ethical conflict between secular state policies and individual religious considerations, there are also glimpses of a peaceful resolution of the contradiction ingrained in choices of dying. This came to light in the case of an 88-year-old Jain monk, Munisree Yasawai Sagarji Maharaj, of the Digambar community who abstained from food and water for 51 days, and in a rare honor, the Kolkata Municipal Corporation reserved the wooden pyre of a crematorium for his last rites. Ironically, while Indians continue to debate, reject and at times acknowledge such indigenous dying practices, many outsiders impute a magical quality to such dying. Bangkok-based writer Richard Rubacher portrayed it as a weird, ‘magical’ death ritual for his book-in-progress, Kissing Death. He claims that Santhara supposedly releases ‘magical energy’ in the body and purifies the mind and soul so that the person can die in a state of total bliss. The dying person experiences joyful hallucinations in the process and falls into a permanently ‘delightful daze’ leading to a euphoric exit. Rubacher believes people who choose to go this way die with a smile on their face – literally dying happy.7 Many other Western commentators find such indigenous dying practices that are outside the purview and dependency of medically delivered solutions as equally blissful (Justice, 1997; Eck, 1981; Parry, 1994). Parry’s exciting anthropological study Death in Benaras unearths the underlying meanings of death rituals in the abode of Lord Shiva, where life is lived in perpetual presence of death. In fact, death in this city ensures not only liberation, Kashyam maranam muktih, but is considered as pleasant as birth. Kashi also affords glimpses of one of the earliest attempts at carving distinct spaces for elder people – a gerontopolis in Cohen’s terminology (1999), which also serves as a space for the dying. The city has some indigenous versions of hospices and care homes that provide accommodation to people who come to live here until they die. The cultural world of the dying is supported by many NGOs who help the elderly overcome feelings of alienation and abandonment on leaving their families. Justice (1997) provides an eloquent description of Kashi Labh Muktibhavan, which has been serving people for several decades. It accommodates only those people who are on deathbed, have firm belief in liberation (moksha) and come especially for the grace that reaches the seeker in Kashi (Kashi-labh). Established in 1958 by the Dalmiya Charitable Trust, thousands have enjoyed‘ Kashi-labh’ at the Mukti Bhawan. Another such home is Mumukshu Bhawan, looked after by Kashi Mumukshu Bhawan Sabha established in 1920. Old persons who want to spend their last days in Kashi (‘Kashi vaas’) rent accommodation according to

End-of-life care  147 their paying capacity; others are accommodated free of cost. A  sacrificial altar (yagyashala) and four temples where religious programs and functions  – puja, arti and bhog – are held, lend dying a unique cultural flavor. Admittedly, such alternative structures may not be readily endorsed by the majority owing partly to their unhygienic setup, cluttered rooms and poor amenities. It is also hard to dismiss the fact that some elderly are forced by circumstances to stay there. However, many such institutions could be modernized with government help and serve to popularize cultural sensitivity in end-of-life care.

Ensuring a cultural passage under medical gaze: the meeting of culture and physiology Ensuring a cultural passage to the final journey in medical settings is a difficult task for all multicultural societies. Many hospices all over the world, especially in countries with a large ethnic mix as in the U.S., the U.K. and Australia, struggle to integrate cultural values in terminal care. The matter is complicated by the fact that death in these countries is a matter of physiology and science and thus gets embroiled in issues of public policy and debates over rights and justice, especially for the minority communities. The real challenge for governments is to protect universal rights while providing a facilitating environment for the minority, particularly the immigrants, which may remind the dying of their familiar cultural roots even in alien environments. In Australia, for instance, the Department of Health and Ageing has set out specific goals to streamline palliative and EoLC services for the elderly belonging to aboriginals, the Torres Strait Islanders and other culturally and linguistically diverse groups. This includes recasting the health care system such that it is sensitive to minority issues, capacitate the system to respond to their problems, develop a comprehensive monitoring and evaluative mechanism for quality assurance and generate demand among the minority groups. Unfortunately, cultural sensitivity in end-of-life care is a highly neglected area in India, and mechanisms for integrating it systematically in terminal care have not been explored either in hospitals or in palliative care practices. How, for instance, does one integrate the cherished Hindu ideal of voluntary dying and relinquishment of the body in palliative care settings? How does one ensure conscious dying and integrate a controlled evacuation of the body in end-of-life care – issues so valued in Indian scriptures as an element of ‘good death’? The Garuda Purana provides some rare glimpses of controlling the vital air (prana), being fearless and alert during dying and lays down elaborate rituals at end-of-life based on the understanding that where the soul goes in the astral plane at death is highly dependent upon the quality of the mind at death, and that the thoughts at death are the next samskaras (unconscious memories) of the astral body. In the Buddhist Vipasana meditation techniques special care is taken to observe all bodily sensations with equanimity and with the understanding of their impermanence, and this practice is supposed to help at the time of death when one is very likely to experience unpleasant sensations. The meditator weakens the reactions, or bhava-sankharas, to avoid

148  End-of-life care birth-producing Kammas. Relatives and friends also help maintain a good Dhamma atmosphere, free from lamenting and gloom and by generating vibrations of compassion (metta), which is favorable for a peaceful death. Although providing such bedside rites is difficult in modern Indian hospitals, still minor modifications in terminal care could be made to accommodate cultural values. For instance, the cultural ideal of conscious dying could be facilitated and nurtured through careful regulation and administration of sense-deadening drugs or through avoidance of surgery for terminal patients and by giving importance to the last moments of death (cf. Chatterjee Chopra, 2011). But all this is possible on the ground that the patient and the family members have a clear understanding of the prognosis of death. Unfortunately, there are too many complexities involved in clinical prognostication, and much needs to be done to assist patients by way of correct disclosure – a practice often avoided by Indian doctors. Jindal (2008), an Indian medical practitioner, considers the art of telling the truth to be an important aspect of terminal care. He believes that a clear message from the doctor about the inevitability of death helps in finding timely and adequate solutions to both spiritual and material concerns, especially those related to distribution of property as part of inheritance. But false assurance of hope or wearing a mask of inaccessibility in front of the dying only adds to the anxiety and depression of the dying person. Unfortunately, the issue of death disclosure is mostly problematic among Indians. The complexities and difficulties of open disclosure among both physicians and family members is evident from a case cited in Lancet (Firth, 2005) of a Gujarati man, Suresh, and his son, Ramesh in the U.K. The Hindu family practitioner warned Ramesh that his father was terminally ill with prostate cancer and tuberculosis. Ramesh resisted this idea and did not want his father to be told of this prognosis. Unfortunately, the hospital staff kept assuring Ramesh that Suresh would recover, and his impending death was never discussed with Suresh. As often happens, the father was clearly aware that he was dying; he gave his books away, talked about dying and obtained a gold chain for his granddaughter’s marriage, but he colluded with his son’s silence. When he died unexpectedly in his son’s absence, Ramesh was racked with guilt because he had not been present to perform the last rites or to say goodbye to his father. Breaking bad news is universally considered a tough matter by doctors and other caregivers. It ends up with chaos and heart-wrenching response from the family. Often, family members thwart an open and truthful communication between doctor and patient and a spiritual acceptance of death in medical settings is strangely lacking. The situation contrasts with its calm acceptance in religious organizations. A short visit to a local temple in one of the rural districts of West Bengal illustrates this. There is a temple devoted to Maa Sitala – a local deity worshiped for prevention of small pox. Over time, the small temple has become quite popular for curing fatal diseases, even cancer. Neighboring villagers in huge numbers are seen flocking to this temple for remedy. They believe that the blessed priestess of the temple, a woman in her mid-fifties, has acquired certain mystic powers to offer remedy for ailing persons. With a hope for cure, people form a long,

End-of-life care  149 swirling queue in front of the temple portico and wait there patiently for hours till the priestess in her Trans calls the patient inside her small thatched room. Some are given charms and talisman, and there are reports of many miraculous cures. However, not all are lucky to get the blessings of the mother. ‘Mother returns a blank look if she foresees that death is inevitable for the person. Such patients return empty handed,’ said a young volunteer. Patients emerge out of the room disheartened, but not in frenzy or in despair. Some whimper, some offer prayers to the Goddess for a while and others shed drops of tears but silently return. It is evident that spirituality offers good coping mechanisms in end-of-life care. Conjoining medicine with culture and spirituality is an urgent need of the day. In India this is especially needed since multiple therapeutic and healing modalities exist in the country that integrate spirituality in many complex ways. For example, the use of basil leaves for the dying is a spiritual practice but is also deeply ingrained in the cultural understanding of the medicinal properties of the plant. Such an understanding among doctors and caring staff may suggest the need to veer away from a single biomedical treatment and caring plan in end-of-life and substitute it with an integrated approach that allows multiple caring and therapeutic modalities, especially in pain management. It has often been seen that when the biomedical model of treatment fails, many families show noncompliance with its governed plans of action and resort to indigenous methods of healing, nutrition and dietary habits to comfort the patient or even to counterbalance the disequilibrium caused by prolonged use of Western medicine. Many Indian patients fear and dread the ‘heat’ produced in the body as a result of consuming allopathic medicines. Even in Western countries where availability and access to alternative medicine is far restricted, noncompliance to mainstream medical treatment is common and poses a serious problem to service providers. In one survey of nurses from 67 hospices in the U.S., the most common barriers to effective symptom management were identified as inability of family care providers to implement or maintain recommended treatments (38 percent) and patients and families not wanting recommended treatments (38  percent) (Johnson, Kassner, Houser and Kutner, 2005). This data clearly indicates the need to change expectations of compliance and points to a room for greater appreciation of the healing traditions and magico-religious rites of the people who are dying. This has an important bearing on the plural, multicultural social reality of India where one needs to acknowledge the diverse practices among the minority communities as an appreciation of the underlying spiritual unity subsumed under the label ‘Indic.’ An overt emphasis on primarily Hindu way of dying may mask the danger of propagating a pan-Indian model of end-of-life care. At present, little is known of the cultural variations in the dying practices of its minority communities, especially the tribals. Currently, there are as many as 646 Schedule tribes, and 75 of them are considered as Particularly Vulnerable with distinctive cultural traits, belief systems, social norms and language. Bearing in mind the diversity of healing systems, an integrative system of health and end-of-life care needs greater attention from the government. Unfortunately, attempts at mainstreaming AYUSH8 have been very slow despite the fact that

150  End-of-life care most experts confirm its important role in noncommunicable diseases, particularly for older persons. Ayurveda, as one of the components of AYUSH, is probably among the few systems of healing designed to prolong life and not merely prevent disease. Vridhopacharaneeyam is a special treatment category that handles various structural changes in the body that come with the degeneration of the dhatus (constituent elements) in old age, through rejuvenating therapy or Rasayana – one of the eight major clinical disciplines of Astanga Ayurveda (cf. Tiwari and Upadhyay, 2009). This emphasis on health and healing has in a way contributed to lack of information on death and dying. However, there are indications that the palliation of symptoms was permitted even for incurable patients through changes in diet and skilled nursing (Kaviratna & Sharma, 1913). Ayurvedic techniques provide relaxation, manage stress and anxiety and create feelings of peacefulness and upliftment for both patients and caregivers. Further research is needed to pave the way for medical-spiritual interface in end-of-life care. As opposed to Ayurveda, which is centered on extending life, Yoga has a more important role to play in end-of-life care. Daily yogic practices of breath control (Pranayam), postures (Asanas) and meditation involve withdrawing consciousness from the body in a sort of preparation for death. Yogis try to renounce the body in several ways and at the moment of final exit are able to gather their life force through the central spine (Sushumna) channel into the head, open the fontanel, then leave through that opening. The yogic perspective and practice of death is now being increasingly explored in end-of-life and palliative care in many Western hospice programs, though not yet seriously implemented in India. Moreover, Ayurveda has been mostly promoted as a curative medical therapy and fails to achieve medicine-spirituality interface with Yoga for best therapeutic results. Yoga also has been promoted more in terms of its ability to address the issue of body, illness and physical health rather than as a philosophy that aims to spiritualize the consciousness and harmonize the four-fold paths of Jnana (Wisdom), Bhakti (Devotion), Karma (Duty) and Raja yoga (self-discipline and practice in everyday life) to attain final liberation. Recently, in a renewed attempt to acknowledge AYUSH’s role in health care, the 12th Five Year Plan has taken bold steps at mainstreaming it by integrating it in medical education, health research and in health services, particularly in public health facilities  – primary and community health centers and district hospitals. A proposal mooted for universal coverage under the country’s National Rural Health Mission (NRHM) stipulates that AYUSH doctors be posted in these centers along with their allopathic counterparts. However, due to implementation failures, so far only 24.6 percent of the public health facilities have availed central assistance for AYUSH medicines and 8.7 percent PHCs; 5.8 percent CHCs and 13.9 percent district hospitals used the centrally sponsored scheme for setting up the infrastructure required for colocation of AYUSH facilities (Sinha, 2012). As per the Planning Commission Working paper, 2011, so far AYUSH facilities have been collocated in only 18,222 health care facilities covering 416 district hospitals, 2,942 CHCs and 1,246 other subdistrict hospitals, 9,559 PHCs and 4,059 equivalent primary care facilities (Ministry of AYUSH). The slow implementation of

End-of-life care  151 AYUSH is also a result of poor acceptance by the masses. A NSSO survey (2015) found that 90  percent of the people both in rural and urban India are inclined toward allopathy treatment; only 5 to 7 percent favour AYUSH. The neglect of Ayurveda and Yoga in India contrasts with the growing interest in Western countries that have been increasingly exploiting their potential in promoting successful aging – aging with enhanced health rather than aging with disabilities. In America, national policy-making organizations like the Institute of Medicine and the Department of Health and Human Services, as well as gerontologists like Rakaowski (1992) and Schmidt (1994), have been trying since long to promote more research on such medical paradigms that address the cause of disease rather than mere symptoms and are more holistic, cost-effective and constitute natural alternatives or complement pharmacological/surgical procedures. Accordingly, Yoga and Ayurveda have been put under extensive research scanner and empirically investigated to exploit their potential. For instance, Maharishi Vedic Medicine (MVM), which is drawn from a broad range of Vedic literature, is one of the systems highly researched in the U.S. for its effect on different correlates of aging – physiologic, neurophysiologic and cognitive. It is believed that MVM addresses the ultimate causes – disruptions of the body’s ‘inner intelligence’ that structures and governs the human body and is seen as a lively and orderly expression of the same intelligence of Natural Law that structures and governs the entire universe (cf. Schneider et al., 2009). Schneider mentions more than 600 scientific research studies conducted over the last 30 years on various MVM treatment and prevention modalities at more than 200 research institutions and universities in 33 countries – staggering figure indeed compared to the neglect in India! Recently, however, Patanjali Yogpeeth has done revolutionary work since 2006 to define Yoga and Ayurveda on the parameters of modern medical science.9 Considerable published scientific evidence has been generated on the positive effect of Yogicasanas and Pranayama on sympathetic nervous system, stabilizing glucose levels, combating mental ailments and improving physical strength (Balakrishna, 2015; Patanjali Research Foundation10). Barring such exceptional efforts in Northern India and some pockets in the Southern India, especially Kerala, the development of AYUSH remains very fragmented. At present, some ayurvedic practitioners do serve a few palliative centers in India, but they are mostly vaidyas practicing like allopathic physicians. In one center in Maharashtra, some were found anxiously waiting for better opportunities in their own fields (which are few), while others were in the process of completing their doctoral theses and appeared to be using their present assignment as a mere stop-gap in their career aspirations; none used Ayurvedic principles in pain and symptom management for the dying. In other words, they hardly served to complement the practice of biomedicine. Finally, while most countries in the West have evolved culturally sensitive grief and bereavement programs, this aspect has been marginalized by biomedicine in India. Many hospices and health care institutes globally have well-designed death and bereavement support programs customized to counsel different types of clients – spouse, family, parents, close friends and children. Countries like the U.K., the U.S., Canada, New Zealand and Japan have made significant progress in

152  End-of-life care institutionalizing bereavement and grief support. However, a major critic to such a program in the U.K. is that they are mainly centered in the context of palliative and acute care hospitals (Arthur, 2010), and that there are not many provisions in nonspecialist care settings. Hindu inputs to bereavement counseling present some fascinating features drawn from its central conceptualization of life and death. Grief is considered as a form of ignorance of the true facts of life and death, and the Gita clearly refrains grieving over the inevitable. Even the funeral mantras in the Garuda Purana caution against mourning near the deceased and the need for remembering and meditating on the Lord (cf. Translation by Wood and Subrahmanyam, 1911). Parry’s (1994) ethnographic account in Benaras shows that ancient Indians had the art of ‘creating life out of death’ through proper propitiatory rituals that transformed the deceased into friendly ancestors, so to speak. The erosion of these rituals emphasizing acceptance of loss and death has changed the character of grieving in India, which has become extremely individualistic in nature and, at times, pathological too. Loss of community support following death and demise of underlying philosophical and spiritual meanings in propitiatory rituals have rendered grief a very complicated process. Most death rituals are merely enacted within a time-saving perspective with the result that there is no culturally tuned strategy of coping with loss or even a fair assessment of its need. Kakar (1987) writes that little is known on how family members cope with the loss of their parents. Such loss may rupture the extended family system by bringing a sense of insecurity in a worldly social sense and also disrupt the sense of sameness and inner continuity of the self. Far less is known on how elderly, who are themselves left alone with multiple morbidities, face loss and grief without family support and no alternative structures for grief resolution. In one encounter involving a middle-aged woman who had lost her husband, the conversation drew on the suggestion that the death of her husband need not be construed as a sudden tragedy but a blessing for her to embark on a different journey in life that was hitherto being spent on mundane affairs. To everyone’s surprise, this suggestion was received as extremely empowering by the woman. She wiped her tears and said, ‘All friends console, none boosts my sagging spirits. I see the point. Thanks for a new direction.’ Such philosophically grounded bereavement strategies suggest the need to revisit Indic culture without nurturing the usual guilt that lurks in reviving matters spiritual in nature. The important thing is to note that spirituality cannot be incorporated and treated as merely a service input as done in the West under palliative medicine. In fact, most scholars are clueless about the ways in which it can be integrated with medical care. Whereas according to Hindu and Buddhist principles, spirituality incorporates an art of living and dying under the implicit understanding that the level of control one needs in the final moment of exit can be effective only when it has been part of a lifelong training in renunciation and mind control that eventually facilitate detachment from the body. In other words, there is no magic wand to wrap up the mysterious story of life and death. As one faces the final sunset, much depends on how the life’s journey was traversed in the first place.

End-of-life care  153

Notes 1 A Hindu mythical ox on which Lord Shiva mounts. He is the gatekeeper of Lord Shiva and his wife, Parvati, in Kailasha, their chief abode. 2 A divine and graceful dance of Lord Shiva that is believed to mark the onset of dissolution of one cycle of creation and beginning of another. 3 Tirtha in Sanskrit means a holy place that is forded by river. There are only six holy places in India that are mentioned in the sacred scriptures of Hindu. The earthly rivers of these places represent the dangerous ethereal Vaitarani river, which souls cross to reach Yamaloka – the place of dead. Vaitarani is both perilous and unclean because it carries urine, blood, pus, rotten flesh and filth of rotting carcasses. Monsters live in this river. However, one who can cross the holy rivers of the earth and reach safely to Tirtha kshetras (holy places) can also safely cross Vaitarani after death. 4 The other hindrances are undifferentiated consciousness (avidya) and the feeling of attachment, egoism, personality, passion and aversion. Undifferentiated consciousness involves ‘The recognition of the permanent, of the pure, of pleasure and of a self in what is impermanent, impure, pain and not-self’ (cf. Woods, 1914). 5 Interesting clips about this practice can be found herewww.youtube.com/watch?v=j DsTGVPw1tM. 6 However, not all deaths end with a peaceful funeral. Death of an iconic and veteran elderly film actor of South India following a massive cardiac arrest made his fans go berserk. People were so distraught upon getting the news of demise that police had to be posted across the state of Karnataka to disperse the mourning crowd. Shops were razed, parked vehicles were set ablaze, several people attempted suicide and many were severely injured before people could be pacified. Television channels that were broadcasting the funeral of the actor had to be unaired, fearing they might blow up the riot many times more (The Hindu, 2006). 7 Prof. Shekhar Hattangadi’s documentary titled Santhara captures the Jain practice of starving till death as a religious practice that sanctions individual freedom to selfannihilate. The documentary film is made in the context of a PIL in the Rajasthan State High Court, which called for a ban on the practice as it surmounts to the act of suicide. The film received awards at the Bangalore Short Film Festival (2015) and the Kolkata Shorts International Film Festival (2015). 8 The Indian System of Medicine & Homeopathy (ISM&H) was created in March 1995 and later renamed as AYUSH to include Ayurveda, Yoga and Naturopathy, Unani, Siddha and Homeopathey in 2003. It now has its own separate Ministry, formed on 9 November 2014, for strengthening its services. As of 2012 the ministry declared having 3,195 AYUSH hospitals in the country with 2,421 dedicated to Ayurveda services; 58,321 beds of which 43,722 from Ayurveda hospitals; 720,937 doctors, with 438,864 trained in Ayurveda; and 24,392 dispensaries with 15,072 providing Ayurvedic services (source: Ministry of AYUSH accessed on August, 2015). 9 This multiservice unit located in about 20 acres of land houses Patanjali Ayurveda Chikitsalaya, which has the world’s largest O.P.D. of the capacity of 6,000 to 10,000 patients per day, an I.P.D. of 100 beds, Panchkarma & Shatkarma clinics and Research Centres, Ayurvedic Surgery  & Research Centre, Diagnostics  & Research Centres (Pathology, Ultrasound, X-Ray & E.C.G., etc.). 10 The foundation headed by Shirley Tellis has compiled scientific research publications on Ayurveda and Yoga (September 2007–2015), and the document has a special section on geriatric population (pp. 333–366). Yog Gram, inaugurated in 2008, is another center by Patanjali Yogpeeth that has done extensive research on Naturopathy, Yoga and Diet plan under Dr. Nagendra Kumar Neeraj. Several books authored by him on Naturopathy are published by Popular Book Depot, Jaipur.

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References Arthur, A. (2010). Bereavement Care Services: A Synthesis of the Literature. Notingham: The University of Notingham. Aurobindo, S., and Mother (1959). A Practical Guide to Integral Yoga. Pondichery: Sri Aurobindo Ashram. Balakrishna, A. (2015). Dainandin Yogabhasyaskram. Hardwar: Divya Prakashan. Chatterjee Chopra, S. (2011). Hindu Perspectives on End-of- Life-Care. In K. J. Doka and A. S. Tucci (Eds.), Living With Grief: Spirituality in End of Life (pp. 191–205). Washington, DC: Hospice Foundation of America. Eck, L. (1981). India’s “Tirthas”: “Crossings” in sacred geography. History of Religions, 20(4), 323–44. Filippi, G. (1996). Mrtyu: Concept of Death in Indian Tradition. New Delhi: D.K. Printworld. Firth, S. (2005). End-of-life: A Hindu view. Lancet, 366, 682–6. Fuller, C. J. (1992). The Camphor Flame: Popular Hinduism and Society in India. Princeton, NJ: Princeton University Press. Ghosh, P., and Dey, A. (2009). Views on ageing and dying of elderly persons of differing socioeconomic status. Indian Journal of Gerontology, 19(3 and 4), 27–44. Hindu. (2006, April 13). Two-day mourning: Funeral today. Jindal, S. K. (2008). Old Age, Disease and Terminal Care: A Hindu Perspective. In S. C. Chatterjee, P. Patnaik and V. Chariar (Eds.), Discourses on Aging and Dying (pp. 217– 224). New Delhi: Sage Publications. Johnson, D. C., Kassner, C. T., Houser, J., and Kutner, J. S. (2005). Barriers to effective symptom management in hospice. Journal of Pain and Symptom Management, 29(1), 69–79. Justice, C. (1997). Dying the Good Death: The Pilgrimage to Die in India’s Holy City. New York: State University of New York Press. Kakar, S.(1987). The Inner World: A Psychoanalytic Study of Childhood and Society in India. New Delhi: Oxford University Press. Kaviratna, Avinash C.; Sharma, P. (1913). The Charaka Samhita. New Delhi: Sri Satguru Publications. ISBN 81-7030-471-7. Lomasky, L. (1994). Ventilating issues of life and death: The case of Helga Wanglie. Public Affairs Quaterly, 8(2), 153–68. McLean, S. (2000). Old law, new medicine: Medical ethics and human rights. Journal of Law and Medicine, 7(3), 324–6. Menon, P. (2014, August 5). No dead beats here, just beats for the dead. Times of India. Ministry of AYUSH. Govt. of India (n.d.). Retrieved August 1, 2015, from www.indianmedicine.nic.in. Parry, J. P. (1994). Death in Benaras. New Delhi: Cambridge University Press. Patanjali Research Foundation. (2015) Research Publications 2007–2015. Haridwar, India: Patanjali Yogpeeth Haridwar. Rakaowski, W. (1992). Disease Prevention and Health Promotion Amog Older Adults: Perspectives on Health Behaviour Research and Community Interventions. In M. Ory, R. Abeles and P. Lipman (Eds.), Ageing, Behaviours and Health (pp. 239–75). Newbury Park, CA: Sage. Sarkar, S. (1887). Agastya Samhita. Calcutta, India: Sri Chunilal Bandyopadhyay [Bengali script]. Retrived from https://archive.org/details/AgastyaSamhita Schmidt, R. M. (1994). Preventive health care for older adults: Societal and individual services. Generations, 18(1), 33–38.

End-of-life care  155 Schneider, R., Alexander, C., Salerno, J., Robinson, D., Fields, J., and Nidich, S. (2009). Disease Prevention and Health Promotion in the Aging with Traditional System of Natural Medicine-Maharshi Vedic Medicine. In K. Walton, R. Schenider, W. Morehead, J. Kernis, D. Llewellyn and C. Pearson (Eds.), Consciousness-Based Education: A Foundation for Teaching and Learning in the Academic Discipline (pp. 273–301). Iowa: Maharshi University of Management. Sharma, H., and Alexander, C. N. (1996). Maharishi Ayurveda: Research Review. Alternative Medicine Journal, 3(1), 21–8. Sheldon, T. (2014). Doctors should care for people who choose to die by starvation, says Dutch Medical Association. British Medical Journal, 348, 331. Singhvi, A. (2015, August 28). Santhara is not suicide. The Times of India. Sinha, K. (2012 August 8). Boost for traditional medicine. The Times of India. Retrieved from http://timesofindia.indiatimes.com/india/Boost-for-traditional-medicine/articleshow/15396590.cms Swami Prabhananda. (2008). The Art of Dying with Dignity. In S. C. Chatterjee, P. Patnaik and V .M. Chariar (Eds.), Discourses on Aging and Dying (pp. 60–82). New Delhi: Sage. Swami Vivekananda. (1896). Raja Yoga or Conquering the Eternal Nature. Kolkata: Advaita Ashrama. Tiwari, B., and Upadhyay, B. (2009). Concept of ageing in Ayurveda. Indian Journal of Traditional Knowledge, 8(3), 396–9. Vishwanath, S. (2015, August 24). A reductive reading on Santhara. The Hindu. Wood, E., and Subrahmanyam, S. V. (1911). The Garuda Purana (Vol. 9). Alexandria: Library of Alexandria. Woods, J. H. (Tr. 1914). The Yoga Sutra of Patanjali. New Delhi: Motilal Banarsidass.

Index

Abraham, S. 80 Abraham, V. 80 absence of protocols in medical decision making 51 – 5 abuse, elder 10, 80, 93, 94n5, 131 – 2 Accredited Social Health Activists (ASHAs) 107, 114 Active Ageing 14 – 15, 27, 36n5 Activities of Daily Living (ADLs) 70 Adam, Michael 76 Addington-Hall, J. 44 Adhikary, S. 55 Advanced Directives (ADs) 6, 8 – 9, 30; psychiatric 30 – 1 Albanese, E. 87 Alexopoulos, P. 78 Alivizatos, V. 78 All India Institute of Medical Sciences 28, 47 Apostolopoulos, A. 78 Ariela, L. 10 Aries, P. 35 Aronowitz, P. 9 Arora, V. 50 Artificial Nutrition and Hydration (ANH) 43 Ashby, M. 43 Assessing Care of Vulnerable Elderly (ACOVE) 41 Assisted Living Facilities (ALF) 7 Association of Palliative Care 64n12 Aurobindo, Shri 134 Aurora, V. K. 51, 56 Australia 71, 100 Austria 71, 76 Avchat, S. 107 Ayurvedic traditions 116, 150 – 1, 153n11

Babyloid 13 Bajrucevic, S. 78 Balakrishnan, S. 51 – 2 Barnett, V. T. 51, 56 Bartsch, C. 128 Ben, N. M. 10 Beuks, B. 59 biomedicine 16; death and dying in local cultural landscape of 128 – 34; inadequacy of curative potential of 125 – 6; palliation and 105 – 7; underlying meanings of suffering and 126 – 8 Blackman, S. 134 Bowman, K. 100, 102, 106 Boyd, M. 8 British Medical Journal 16 Broad, J. B. 8 Buddhism 152 Burt, J. 98 Butola, S. 48 Callahan, Daniel 3, 16, 124 Canada 70 – 1, 76, 100, 104 caregivers: caring for family 86 – 90; overlooked needs of paid 90 – 1 Cassel, E. 126 Center for Disease Control and Prevention (CDC) 14 China 12, 23, 74, 93n4 Chopra, Jo 130 chronic diseases: increase in 23 – 4; years lost to disability (YLDs) and 23, 35n1 Coddington, Isla 43 – 4 Cohen, L. 110 Connolly, M. J. 8 Cooper, L. 9

158 Index Cox, T. F. 44 cultural context of death and dying in India 139 – 40, 153nn1 – 4, 153n6; meeting of medicine and 147 – 52; outside medical gaze 143 – 7 Curer, C. 101 Curtis, J. 18n6 Daly, M. 69 Dang, R. 50 Das, J. 47 death and dying in India 12 – 14, 23; Artificial Nutrition and Hydration (ANH) during 43; cultural context of 139 – 40, 143 – 52, 153nn1 – 4, 153n6; demographics of 2, 12 – 13; disrespect for the dead after 62 – 3; gaps in policy and program implementation regarding 14 – 16; grieving after 63; high cost of 30, 62; at home 34 – 5, 78 – 91; in hospitals 40 – 1; improving the experience of 3 – 7; as least-preferred nation 1; limitations of new measures for 8 – 12; local biomedical cultural landscape of 128 – 34; poor management of 60 – 2; protracted 132 – 3; quality indicators 1, 16n1; recording practices 26 – 7; settings for 8, 41; spiritual beliefs related to 35, 138 – 43; by suicide 13 – 14, 77, 80 – 1; trajectories of 3; see also end of life care (EoLC); euthanasia Death in Benaras 146 decision making, improved end-of-life 45 – 6 Deep Prabeen Porisheba 92 deinstitutionalization approach 33 – 4 dependency ratio 24 – 5, 108 – 9 De Roo, M. 101 Desai, S. 49 Dey, A. 140 Dhanasekaran, G. 28 Dhumale, G. B. 107 DNR (do not resuscitate) orders 55, 125 Downey, L. 18n6 East Kent Hospitals University Foundation 44 Edasseri, D. 104 elderly, the: abuse of 10, 80, 93, 94n5, 131 – 2; deinstitutionalization approach to care of 33 – 4; deliberately refraining from food and water 145 – 6, 153n7; demographics of 2, 12 – 13, 23;

dependency ratio 24 – 5, 108 – 9; hospital outcomes for 28 – 9; inappropriate treatment of 48 – 54; increase in India 23, 35n3; out-of-pocket expenditures for 30 – 1; poor level of support for aging-athome by 79 – 81; prevalence of disability among 32, 63n1, 71; protracted deaths of 132 – 3; suicides by 13 – 14, 77, 80 – 1; trajectories of death in 3; unmet need for health care 25, 32 – 3, 35, 36n4, 46 – 8 Electronic Palliative Care Summary (ePCS) 63n2 Ellershaw, J. E. 44 end of life care (EoLC): absence of protocols in medical decision making in 51 – 5; Active Ageing and 14 – 15, 27, 36n5; deficient role of the state in 82 – 4; deinstitutionalization approach to 33 – 4; ethical complexities in 55 – 8; Gold Standards Framework 5; improved decision making in 45 – 6; improvements in 3 – 7; Liverpool Care Pathway (LCP) 6, 9, 42 – 5; meeting of culture and physiology in 147 – 52; new care pathways for 42 – 5; pain and management symptom management in 43 – 4, 98 – 9, 127; palliative approach to 111 – 16; within primary care 41 – 2; quality 17n4; reforms in public health policies and 25 – 6; spiritual practices and 35, 138 – 43; see also palliative care Engelberg, R. 18n6 ethical complexities in end-of-life care 55 – 8 euthanasia 1 – 2, 10 – 11, 17n3, 56, 128, 134, 135n1; passive 122 – 4 Farber, N. 128 FICCI 30 Filippi, G. 141 Finch, J. 75 Finland 71 – 2 First National Care of the Dying Adult (NCDA) 64n3 foregoing of life-support therapy (FLST) 46 Forman, J. 4, 42 Freemantle, A. 6 Frogatt, K. 76 Gajjar, B. 49 Garrard, E. 112 Gauthier, S. 128 Gavala, V. 78

Index  159 Gawande, A. 130 George, Robert 64n12 Germany 71, 73 Ghodke, Y. D. 107 Ghosh, P. 140 Gilligan, C. 75 Gold Standards Framework (GSD) 5 Gorer, G. 35 Gott, M. 8 Goyal, R. 107 Graceful Exits: How Great Beings Die 134 grieving 63 Guerchet, M. 87 Gupta, M. 81 Gupta, N. 81 Hall, S. 127 Hammer, J. 47 Harvard School of Public Health 25 Hastings Center 3 Health Care at Home India (HCAH) 91 Health Promoting Palliative Care (HPPC) 100 HelpAge India 80, 85 – 6 HelpAge International 71, 73 Herting, J. 18n6 Higginson, I. 127 High Dependent Unit (HDU) 55 Hindu spiritual beliefs related to dying 35, 138 – 43, 153nn1 – 4, 153n6; apart from the medical gaze 143 – 7; combined with the medical gaze 147 – 52; cultural contexts and 139 – 40, 143 – 7 Hinshaw, D. B. 126 home 7, 10, 33 – 5, 78 – 9; ageing-inplace at 93n1; caregivers 86 – 91; care response in advanced countries 69 – 75; dying at home in India and 78 – 91; meanings for those living with aging and dying 82; new initiatives for care at 91 – 3; paltry care provisions for dying at 84 – 6; see also Long-Term Care (LTC) Home and Community Care Act (HCCA), United States 70 hospices 7, 11; funding of 33 hospitals 8; chaotic discharges from 58 – 60; fragmented Indian landscape 46 – 8; human errors in 29; inappropriate treatment in 50 – 5, 64n12; intensive care units (ICUs) 50 – 1, 53 – 4, 62; protracted dying in 3, 30 – 1; quality 28 – 9; rural and urban access to 28 human errors in hospitals 29 Hungary 73

inappropriate treatment 48 – 55 India: death recording in 26 – 7; disrespect for the dead in 62 – 3; dying at home in 79 – 91; fragmented landscape of health care in 46 – 8; health insurance in 29 – 30; hospice funding in 33; inappropriate treatment in 48 – 55; increase in chronic diseases in 23 – 4; lack of access to palliative care in 31 – 2, 36n6; life expectancy increase in 23, 35n3; narcotics regulation in 112 – 13, 117n7; need for new health care models in 27 – 8; new initiatives for home care in 91 – 3; palliative care in 102 – 9; poor level of support for aging-at-home in 79 – 81; poor management of death in 60 – 2; spending on health care 24; spiritual beliefs in 35, 138 – 43; yogic traditions in 142 – 3 Indian Association for Palliative Care (IAPC) 53 Indian Council of Medical Research (ICMR) 32 Indian Journal of Palliative Care 105 – 6 Indian Society of Critical Care Medicine (ISCCM) 51, 53, 62 Indonesia 23 infectious diseases 24, 35n2 information deficit in India 26 – 7 Instrumental Activities of Daily Living (IADLs) 70 intensive care units (ICUs) 50 – 1, 53 – 4, 62; at home 91 IRIS Knowledge Foundation 24 Israel 112 Itskov, Dmitry 16 Jacelon, C. 127 Jacob, K. 80 Japan 12 – 14, 23, 73 Jindal, S. K. 148 Juneja, D. 50 Justice, C. 146 Kafetz, K. 15 Kakar, S. 152 Kamble, S. 107 Kane, R. 75 Kane, R. 75 Kashi Labh Muktibhavan 146 – 7 Kaufman, S. 51 Kaur, M. 29 Kellehear, A. 76, 99 – 100 Kerse, N. 8

160 Index Kevorkian, Jack 123, 135n2 King Edward Memorial (KEM) hospital 1 Kissing Death 146 Kleinman, A. 126 Kohli, J. 29 Kuruvila, S. 28 Ladusingh, L. 30 Lafferty, W. 18n6 Lawton, J. 11, 101 Leadership Alliance for the Care of Dying People 45 Left Against Medical Advice (LAMA) 51 – 3 Lewis, J. 69 Lien Foundation 1, 16n1 Lightfoot, E. 110 Liverpool Care Pathway (LCP) 6, 9, 42 – 5 Lock, David 125 Lomasky, L. 145 – 6 Longhurst, S. 127 Longino, C. F. 126 Long-Term Care (LTC) 4, 9; in advanced countries 69 – 71; questioning the rhetoric surrounding 75 – 9 Madrid International Plan of Action on Ageing 71 Mahapatra, P. 26, 47, 107 Maharishi Vedic Medicine (MVM) 151 Maharshi, Sri Ramana 134 Mander, H. 84 Mani, R. 51 – 2 Marie Curie Palliative Care Institute 6 Mausbach, J. 128 Mayland, C. R. 44 McMaster Health Forum 3 Medicare 124 Menon, P. 145 Millennium Development Goals 16 Mishra, S. 29 Mohanty, M. 81 Mohanty, S. 57 – 8, 81 Moni Dadu case 40 – 1 Murphy, J. W. 126 narcotics 112 – 13, 117n7 Nasa, P. 50 National Health Services (NHS), UK 6 National Institute for Health and Clinical Excellence (NICE) 6

National Institute on Ageing 98 National Knowledge Commission 27 National Ombudsman Reporting System (NORS) 9 National Policy for Older Persons 33 National Programme for Prevention and Control of Cancer, Diabetes, Cardiovascular Diseases and Stroke 103 National Programme for the Health Care for the Elderly (NPHCE) 48, 82, 103, 112 Neighborhood Network in Palliative Care (NNPC) 104 Netherlands, the 71, 92 – 3 New Zealand 43 – 4, 55, 73 Non-Residential Indians (NRIs) 40, 92, 94n6 Norway 71 Nuland, N. 3, 126 Nursebots 13 nursing homes 7 – 8; management issues and abuse in 9 – 10 Older Americans Act of 1965 (OAA), United States 70 Ottawa Charter 116n2 Ottawa Health Research Institute 3 out-of-pocket expenditures 30 – 1 paid caregivers 90 – 1 pain and symptom management 43 – 4, 98 – 9, 127 palliation 105 – 7; rural urban variations in 107 – 9; without a service mix 109 – 11 palliative care 11 – 12; approach to end of life care 111 – 16; complexity of providing 98 – 9; components of 117n3; for destitute elderly 109; funding 117n4; improvement of 4 – 5; in India 102 – 5; lack of access to 31 – 2, 36n6; for mental illnesses 110; palliation and 105 – 7; potential benefits of 100 – 1; public health system and 99 – 100; in the West 98, 116n1; without a service mix 109 – 11; see also end of life care (EoLC) Pandey, A. 30 Pandya, S. K. 51, 111 Parry, J. 134, 146, 152 Pasman, H. 101 passive euthanasia 122 – 4 Patanjali, Sage 142

Index  161 Patnaik, M. 81 Pawar, M. 29 Peberdy, A. 116 Percot, M. 115 physician-assisted suicide (PAS) see euthanasia Portea 91 Prasad, V. 84 primary care, end-of-life care within 41 – 2 Prina, M. 87 Prince, M. 87 prognostication tools 49 – 50 Proulx, K. 127 Psychiatric Advance Directives (PADs) 30 – 1 Public Health Foundation 25 Pullicino, Patrick 9, 44

Silveria, M. 4, 42 Sinclairs, P. 101 Singer, P. 100, 102, 106, 127 Singh, H. 81 Singh, O. 50 Smith, Richard 16 social capital 34 Social Care Institute of Excellence 77 – 8 Sonal, Pruthi 55 – 6 Spiro, H. M. 127 Stoffell, B. 43 suicide 13 – 14, 77, 80 – 1

Quality of Death and Dying Questionnaire 18n6 Quality of Death Index 1, 16, 17n2 Quinlan, Karen Ann 2, 17n3

Ungerson, C. 90 United Kingdom 72, 74, 76 – 7, 100; see also Liverpool Care Pathway (LCP); Scotland United Nations Population Fund (UNFPA) 29, 71, 73 United States, the 51, 63, 70; Medicare in 124 Unni, K. 104

Rajan, S. I. 30 Rakaowski, W. 151 Rao, M. 26, 107 Rashtriya Swasthya Bima Yojana 29 Raviraj, R. 55 Rayne, R. 98 Relhann, N. 81 Resich, T. 128 residential care facilities 7 Rethinking Palliative Care: A Social Role Valorisation Approach 101 Riddle of the Disease 126 Rubacaher, Richard 146 Rumbold, B. 100 Sahu, G. 81 Sasha, S. 78 Saunders, Cicely 7 Schmidt, R. M. 151 Scotland 42, 59 Setting Limits: Medical Goals in an Aging Society 3 settings, death 8, 41 Seymour, J. 6, 60 Shah, R. 49 Shanbaug, Aruna 1 – 2, 122 – 4, 129, 132, 134, 135n1 Sharma, B. 81 Sharma, S. 81

tattoo directives 9 Thailand 74 Tosh, William 78 – 9 Tribeca Care 92

Vatuk, S. 134 Veatch, R. M. 3 Virani, Pinky 1 Vishwanath, S. 144 Walsh, Charles 91 Walsh, Gareth 91 West, the: death and dying in 2 – 12; facilitation of imminent death by physicians in 51; grieving programs in 63; palliative care in 98, 116n1; public health strategies in 26; response to home care in 69 – 75 Williams, E.M.I. 44 World Bank 47 World Health Organization (WHO) 4, 14, 32, 36n5, 48, 99; on palliative care 110, 114 – 15 years lost to disability (YLDs) 23, 35n1 Yengkhom, S. 57 Yogic traditions 142 – 3, 153n11 Yogyakarta Declaration 17n5, 26