Death, Dying, Culture: an Interdisciplinary Interrogation [1 ed.] 9781848881730, 9789004371941

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Death, Dying, Culture

Probing the Boundaries Series Editors Dr Robert Fisher Lisa Howard Dr Ken Monteith Advisory Board James Arvanitakis Katarzyna Bronk Jo Chipperfield Ann-Marie Cook Peter Mario Kreuter S Ram Vemuri

Simon Bacon Stephen Morris John Parry Karl Spracklen Peter Twohig Kenneth Wilson

A Probing the Boundaries research and publications project. http://www.inter-disciplinary.net/probing-the-boundaries/ The Making Sense Of Hub ‘Death and Dying’

2013

Death, Dying, Culture: An Interdisciplinary Interrogation

Edited by

Lloyd Steffen and Nate Hinerman

Inter-Disciplinary Press Oxford, United Kingdom

© Inter-Disciplinary Press 2013 http://www.inter-disciplinary.net/publishing/id-press/

The Inter-Disciplinary Press is part of Inter-Disciplinary.Net – a global network for research and publishing. The Inter-Disciplinary Press aims to promote and encourage the kind of work which is collaborative, innovative, imaginative, and which provides an exemplar for inter-disciplinary and multi-disciplinary publishing.

All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means without the prior permission of Inter-Disciplinary Press.

Inter-Disciplinary Press, Priory House, 149B Wroslyn Road, Freeland, Oxfordshire. OX29 8HR, United Kingdom. +44 (0)1993 882087

ISBN: 978-1-84888-173-0 First published in the United Kingdom in eBook format in 2013. First Edition.

Table of Contents Introduction Lloyd Steffen and Nate Hinerman

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PART 1 Culture and Caregiving Habits of the Heart in End of Life Care Nate Hinerman

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The Dying: Individual Need or Professional Prerogative? David MacKintosh

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So Far and So Close: The Challenge of Death Abílio Oliveira and Rute Rodrigues

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Significance of Mental and Spiritual Support for Cancer Patients Suvi Saarelainen

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PART 2 Culture and Dying Lessons About Dying and Death from Disasters John F. Freie

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Death through the Eyes of Innocence: Perceptions of Death in Childhood Alejandra Freitas, Abílio Oliveira and Rute Rodrigues

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How Mortality Salience Affects Religiosity: Considering Life History Theory, Terror Management Theory and IQ Sarah Heany

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Fatum and Fragility: Mario Perniola’s Philosophy of Death Stein A. Hevrøy

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Satire’s Mirror: Exposing Death Denial in Swift’s Gulliver’s Travels Larissa Fitzpatrick

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On Kevorkian, Vivisection and Beneficent Execution Lloyd Steffen

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Determining Death: Perspectives from World Religions Susan M. Setta

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Peter Brueghel’s Triumph of Death Jean-Louis Claret

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PART 3 Culture and Mourning Exploring Funeral Fashions and Music pro defunctis in the Southern Netherlands (1600-1799) Stefanie Beghein

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Honour(ing) The Departed: How Death Facilitates Honour in American Culture Gabrielle Kristjanson

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Resisting Intimations of Immortality: Aubrey de Grey’s Science and Saramago’s Novel Susan M. Behuniak

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Death and the Maiden: Bataille, Blanchot and the Deathly Female Figure Leslie Anne Boldt

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The Death of the Author’s Mother: Postmodern Uncertainties in Contemporary Memoir Linda K. Karell

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Showing Mourning in Slow Motion Inga Schaub

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Near-death Experiences throughout the History of Art and Science: Challenges for the XXI Century Ana León

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The Film Musical as Cultural Vehicle for Dealing with Death and Dying Christina Lovey

217

Introduction Lloyd Steffen and Nate Hinerman 1. Death, Dying and Culture This inter- and multi-disciplinary volume examines how culture impacts care for the dying, the overall experience of dying, and ways the dead are remembered. Over the past three decades, scholarship in thanatology has increased dramatically. This text localizes a broad array of perspectives that research, analyze, and interpret the many interrelations and interactions that exist between death and culture. Culture not only presents and portrays ideas about ‘a good death’ and norms that seek to achieve it, but culture also operates as both a vehicle and medium through which meaning about death is communicated and understood. Sadly, too, culture sometimes facilitates death through violence. In general, the twenty authors in this volume approach their topic in one of the following ways: ‘death’ as an expression of doctrinal beliefs and/or core values, death and dying as an on-going movement between an individual and a larger socio-cultural matrix, or death as essentially a cultural construction. These investigations engage cultural studies from a variety of perspectives, and they interrogate the stability of meaning(s) assigned to terms such ‘culture,’ ‘death,’ ‘dignity,’ ‘care,’ etc. Authors included here produce conversations that engage historical, ethnographic, normative, literary, anthropological, philosophical, artistic, and political dynamics relevant to the interplay between death, dying and culture. This collection of chapters strives to (re-)produce, then, an interdisciplinary conversation about how death and dying are shaped by relevant cultural factors. 2. The Conference and the Goal of this Book The Eighth Global Conference: Making Sense of Dying and Death convened in November of 2011 in Prague, Czech Republic, asking as its orienting question, ‘How does culture impact death and dying?’ As a component of InterDisciplinary.Net’s Probing the Boundaries project, the conference brought together physicians, psychologists, therapists, hospice workers, nurses, philosophers, religion scholars, sociologists, artists and film-makers interested in researching and reflecting on how culture affects meaning- and decision-making at the end of life. The conference provided a forum for encounter, dialogue and exchange; and it sponsored a thorough interaction of ideas, research methods, and points of view regarding a wide variety of important end of life issues. As a result of this framework, the conference promoted and sponsored interand multi-disciplinary encounters by bringing people together from differing contexts, disciplines, professions, and vocations, with the aim to engender and nurture engagements that cross the boundaries of intellectual work in death studies, broadly conceived. The organizing principle of the conference involved a firmly

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__________________________________________________________________ held conviction that inter-disciplinary dialogue about end of life issues can enable people to surpass the boundaries they might usually encounter in their respective disciplines, and instead offer new perspectives to ‘try on,’ which may perhaps be novel, challenging, and lead to new frontiers of analysis, problem-solving and meaning-making. Indeed, perhaps because of its commitment to inter-disciplinary and multidisciplinary discourse, this edited compendium of conference papers illuminates crucial end of life arenas, suggests new possibilities for approaching perplexing dimensions of dying and death, and creates exciting horizons for future conversations – with persons from a wide variety of national and international backgrounds. 3. Content of the Book The editors have divided the chapters into three sections. A. Culture and Caregiving The chapters in this section explore connections between health care systems, caregivers, and matters of public policy that affect those at the end of life. It includes discussion of how, where, when, and why dying occurs, and the role culture can play in each phase. Authors in this section explore managed care settings, the role of life-extending technologies, and how culture shapes caregiving at life’s end. In his chapter, ‘Habits of the Heart in End of Life Care,’ Nate Hinerman elaborates how, given newly evolving care paradigms, caregivers might best attend to and serve a client's life narrative, cultural identity, and goals for care. After first contrasting caregivers who conduct their practice by demonstrating ‘unreflective’ care habits with those committed to seeing each client as a unique individual, Hinerman considers the relationship between habit-taking and caregiving at life's end in light of increasingly common ‘producers vs. consumers’ health care models that constantly strive for more ‘efficient’ client encounters. David MacKintosh uses his perspective as a palliative care physician to address a fundamental question at the end of life in his chapter entitled, ‘The Dying: Individual Need or Professional Prerogative?’ MacKintosh acknowledges that the palliative care movement has made a significant contribution to improving the conditions under which many die. Yet, he goes on to explore how ‘the dominance of death in the management of the life of the dying, as opposed to the relief of suffering, can be seen as a product of a diminished recognition of individual need.’ MacKintosh’s then analyzes why there is a real need to reassert the needs of the dying against possible competing demands of ‘dominant ideologies and professional power in the dying process.’ In the next chapter, Abílio Oliveira and Rute Rodrigues present results from a research study they conducted regarding how age and gender play a role in

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__________________________________________________________________ peoples’ reactions to death. Looking at the social context of death by showing short films to both caregivers and patients, they found evidence to support the idea that an individual’s reaction to death is largely shaped by whether the death was private or public, and the extent to which the death was perceived to be ‘controlled.’ In the final chapter from this section, Suvi Saarelainen explores research results derived from a study consisting of data from 13 letters and 7 interviews. By using various methods of content analysis, the results of the project supported the thesis that ‘it is possible to help cancer patients’ express their needs for support, including spiritual support.’ Saarelainen then explains how caregivers might conduct such support. B. Culture and Dying Dying occurs always in a cultural context where social structures, shared perspectives and embedded values guide the process of understanding and meaning making. Within culture are to be found the resources for critique of established patterns when political and moral problems arise in the communal dimension of dying and death. John F. Freie’s chapter, ‘Lessons About Dying and Death From Disasters,’ connects the San Francisco earthquake of 1906, Hurricane Katrina and the recent 2011 Japanese tsunami to the mutual aid that disaster survivors provide one another in the experience of physical and psychological trauma. Freie challenges the false perception that the masses are out of control during disasters and demonstrates how many of the problems that arise in the wake of disaster are actually caused by political, governmental and social elites whose fear of the masses compounds problems. In their empirical study, ‘Death through the Eyes of Innocence: Perceptions of Death in Childhood,’ three researchers in Portugal – Alejandra Freitas, Abílio Oliveira and Rute Rodrigues – present evidence for the way children represent death in thought, imagination and practice, with differences noted between boys and girls, younger and older children, and those children who have experienced death and those who have not. Their study challenges a common assumption among adults that children cannot understand death or grapple with its meaning, when, in fact, the evidence produced by this study shows how extensively they do. Taking a social psychology approach, Sarah Heany inquires into ‘How Mortality Salience Affects Religiosity: Considering Life History Theory, Terror Management Theory and IQ.’ In a thickly researched finding, Heany argues that heightened awareness of death (salience) can be correlated with various factors, including life history and IQ, to show that religion provides an adaptive and even constructive grouping behaviour for people when they are facing death. Religion, she argues can increase group coherence and cooperation, thereby improving a group’s − and each member’s − chances of survival.

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__________________________________________________________________ Stein A. Hevrøy’s chapter, ‘Fatum and Fragility: Mario Perniola’s Philosophy of Death,’ connects the insights of the Italian philosopher Mario Perniola to Nietzsche, the Zen samurai and even Jesuitical teaching, for in all of these places one can find the argument put forth that in order to live authentically and well, one must live as though dead. The idea of cultivating indifference and, as Nietzsche said, accepting one’s fate and embracing one’s situation as one’s own (amor fati), is to cultivate an ethical attitude in which loss of identity – death – becomes the very essence of ethics and living well. In her contribution to the volume, ‘Satire’s Mirror: Exposing Death Denial in Swift’s Gulliver’s Travels,’ Larissa Fitzpatrick draws on Ernest Becker’s insights about symbols, immortality and culture to argue that satire holds up a mirror to society to expose the many ways the denial of death can lead to intolerance and destructive violence. She analyzes Jonathan Swift’s Gulliver’s Travels to demonstrate how humour and satire express resistance to all that is done in culture to deny death, offering the view that becoming aware of death anxiety – and confronting its many symbols – is actually necessary for cherishing life. In the chapter, ‘On Kevorkian, Vivisection and Beneficent Execution,’ Lloyd Steffen criticizes the proposal made by Dr Jack Kevorkian that executions should be voluntary research opportunities for science made possible by live but anesthetized prisoners condemned to death. Kevorkian’s proposal represents the triumph of utilitarian thought in service to a beneficent end, and it fails because it denies any role for human rights in the execution practice and negates moral meaning in punishment itself. Susan M. Setta considers how religions address the different ways of establishing death in her chapter, ‘Determining Death: Perspectives from World Religions.’ The broad overview examines attitudes toward neurological versus heart and lung criteria of death in the traditions of Judaism, Christianity, Islam as well as in Hinduism and Buddhism, with differences on this ethics questions apparent not only between traditions but also within them.. Jean-Louis Claret examines ‘Peter Brueghel’s Triumph of Death,’ a 1560s painting that presents a variety of macabre scenes that evoke European religious conflicts and even the Black Death. Claret seeks out a deeper meaning about death in the canvas, finding clues in an actor and a woman’s smile. With Shakespeare at hand he offers an alternative view that the true subject of the painting, prior to the death that is imminent for so many, is life, art and even, ultimately, love. C. Culture and Mourning Ritual and cultural performance function to help people confront the death of loved ones and face their own mortality as well. The chapters in this section explore how the living respond to the presence of death by utilizing creative forms and cultural symbols and representations to mourn and remember and come to terms with death.

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__________________________________________________________________ Stefanie Beghein’s chapter, ‘Exploring Funeral Fashions and Music pro defunctis in the Southern Netherlands (1600-1799),’ examines music as part of funeral culture in the Southern Netherlands during the seventeenth and eighteenth centuries. Focusing on the case of Antwerp, she explores church records and the printing of funeral masses by local publishers to investigate the role of funereal musical fashion in a particular time and place, with attention given to the influence of the baroque on funerary practices. Gabrielle Kristjanson’s chapter, ‘Honour(ing) The Departed: How Death Facilitates Honour in American Culture,’ focuses on the Martin Scorsese film, The Departed, to inquire into cultural attitudes towards death in American society, especially as they are related to public and private dimensions of honour. As Americans frequently attribute honour to the deaths of public servants and to the community of public service itself, Scorsese’s film problematizes this idea by demonstrating a scenario in which these honours are constructed under false pretenses. This analysis exposes the falseness of these honours and demonstrates how social and cultural constructions are involved in the ways Americans negotiate fear of death. In ‘Resisting Intimations of Immortality: Aubrey de Grey’s Science and Saramago’s Novel,’ Susan M. Behuniak explores Aubrey de Grey’s SENS project (Strategies for Engineered Negligible Senescence), an ‘immortality’ project that supports the effort to repair all human age-related damages and ‘cure’ old age. After examining objections to this effort, Behuniak asserts the continuing value of death acceptance that is the heart of thanatology projects. She concludes with a thanatological appeal to the wisdom of José Saramago, whose imaginative and curious novel, Death with Interruptions, demonstrates the practical folly and cultural chaos that would result from actually doing away with death. Leslie Anne Boldt undertakes a literary analysis of death and its relationship to the feminine in ‘Death and the Maiden: Bataille, Blanchot and the Deathly Female Figure.’ Drawing on theorists who have demonstrated how the female protagonist can be associated with death, Boldt examines two novels, Bataille’s Blue of Noon and Blanchot’s Death Sentence, to show how these two creative literary artists depict the deathly female, which then becomes a key to literary interpretation. In her chapter, ‘The Death of the Author’s Mother: Postmodern Uncertainties in Contemporary Memoir,’ Linda K. Karell draws on Roland Barthes’ insights about the unrepresentability of death in language to investigate three authors who wrote memoirs about the deaths of their mothers. In a postmodern mood and including a reflection about her own mother’s death, Karell considers Terry Tempest Williams’s Refuge, Mary Gordon’s Circling My Mother, and Meghan O’Rourke’s The Long Goodbye to conclude that different as these memoirs are, they all reveal a psychological need to read and write narratives about death despite ever shifting meanings

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__________________________________________________________________ Roland Barthes’s classic of photographic theory, Camera Lucida, provides the starting place for Inga Schaub’s chapter, ‘Showing Mourning in Slow Motion,’ which considers the role photography plays in mourning. Schaub analyzes Barthes’s reflections on the loss of his mother, published as Mourning Diary, then goes on to examine the artistic work of photographer Seiichi Furuya, who focused camera attention on his wife both when alive and when dead by suicide. Schaub’s chapter concludes with an examination of the political dimension of mourning as it is revealed in Pia Lindman’s New York Times Project, which brought to the fore transformed newspaper images of mourners grieving losses in war and other politically related disasters. Ana León subjects near-death experiences to analysis in her chapter, ‘NearDeath Experiences throughout the History of Art and Science: Challenges for the XXI Century.’ Noting that near death experiences or NDEs have been reported throughout history, León makes a case that it is important that those resuscitated discuss their NDE with medical personnel, and while currently such communication is rare, it should be made a part of high-quality health care. These experiences can advance our understanding of the science and biology of death, León argues, since those resuscitated with NDEs seem to challenge ideas about irrevocable death and how that is determined. Christina Lovey, a video and photographic artist, considers how certain film musicals, like Carousel and A Star is Born, provide a popular and accessible cultural medium through which people can express grief and work toward the reconstitution of the grief-stricken self. When this parataxically written chapter, ‘The Film Musical as Cultural Vehicle for Dealing with Death and Dying,’ was presented at the Global Dying and Death Conference 8 in Prague in 2011 Lovey included a musical performance, 4. Conclusion Readers should be aware that the papers presented at the 8th Global Dying and Death Conference were all delivered in English, but English is not the native language of many of the participants, including some of those whose papers are included in this volume. The editors have taken some small liberties to improve the smoothness of communication at certain junctures in some of the chapters, but all such efforts were made only to increase intelligibility. We trust that this volume will offer worthwhile insights into the work of this particular group of dying and death scholars who came together in a wonderful city at a particular moment in time. We also hope that this collection will provide some further insight into – and evidence for – the importance of dialogue given the inherent difficulties and often unexpected learning opportunities that arise from serious inter-disciplinary conversation.

PART 1 Culture and Caregiving

Habits of the Heart in End of Life Care Nate Hinerman Abstract Clinical caregivers, including physicians, nurses, social workers, and chaplains, cultivate habits particular to their respective disciplines. In our medical communities, such habits naturally provide guides for caregiving and assessment. Although habits can start off thoughtful, well-intentioned, and reflective, they quickly can become routinized during implementation. Given our respective trainings, our particular care setting’s regulatory requirements, and the larger ‘culture of care’ each care setting manifests, the following challenge arises: how can caregivers keep their (inter-)actions with clients from becoming overly rigid and routine? Given newly evolving care paradigms, and in the context of current medical models, how might caregivers attend to and serve each client’s life narrative, cultural identity, goals for care, affections, and/or religious understandings sensitively, especially given overburdened care delivery environments? Caregivers who conduct their practice demonstrating unreflective care habits may be prone to overlook the uniqueness of each clinical encounter. This chapter considers the relationship between habit-taking and caregiving at life’s end in light of increasingly common ‘producers vs. consumers’ health care models. Key Words: Caregiving, habits, end-of-life, dialogue, narrative. ***** 1. Introduction In his brilliant article entitled, ‘The Military Metaphors of Modern Medicine,’ Abraham Fuks, M.D., writes: Medical discourse is replete with the language of war and such phrases as ‘the war on cancer,’ ‘magic bullets,’ ‘silver bullets,’ ‘the therapeutic armamentarium,’ ‘agents of disease,’ ‘the body’s defenses,’ and ‘doctor’s orders’ are deeply engrained in our medical rhetoric. The mindset engendered by this discourse of war renders the patient as a battlefield upon which the doctorcombatant defeats the arch-enemy, disease… Diagnostics becomes centered on the putative agent and therapeutics revolves around extirpation and conquest. Arguably, the most important effect of this framing of medicine is the eradication of the patient’s voice from the narrative of illness. The dialogic construction of the narrative of illness is supplanted by the

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__________________________________________________________________ physician’s case record of his search for the physical seat of disease and the healing effected through the development of meaning falls victim to a militarized discourse. The military metaphors that pervade medicine undermine the ability of physicians and society to deal with the burgeoning burden of chronic illness. 1 The scenarios Fuks describes demonstrate well ‘unreflective habits’ in the clinical setting. American philosopher Charles Sanders Peirce maintains that all ideas are habits, and that habits function as guides for action. Yet, communication and caregiving are habit-taking arts, not a routine science of actions, no matter how much practice one has trying to model them: Just in the degree in which a physician is an artist in his [sic] work, he uses his science, no matter how extensive and accurate, to furnish him with tools of inquiry into the individual case, and with methods of forecasting a method of dealing with it. Just in the degree in which, no matter how great his learning, he subordinates the individual case to some classification of diseases and some generic rule of treatment, he sinks to the level of the routine mechanic. His intelligence and his action become rigid, dogmatic, instead of free and flexible. 2 American philosopher John Dewey asserts that habits, no matter how thoughtful and reflective when they start off, can become ‘routine’ and ‘mechanic’ during implementation, which usually occurs in a practical context (i.e., working with an actual patient). Like any occupation, caregivers, including physicians, nurses, social workers, and chaplains, must cultivate certain habits in their caregiving activities and attitudes. How can caregivers keep their actions from becoming overly rigid, unreflective, and rote? Instead, how can conversations emerge from reflective habits of care that allow for accurate medical assessment on the one hand, and yet extend freedom in meaning-making which may sponsor important insights for the patient on the other? This article next will examine C.S. Peirce’s philosophy for clues to these challenges. 2. Human Inferences in the Cosmos: An Exercise in Habit-Taking The connective strand in C. S. Peirce’s cosmological system that links the cosmos to the human he calls mind (also referred to as ideas). Peirce presumes that from our anthropomorphic starting point, if we can trace the growth of ideas in human inquiry then we will discover something about how the cosmos grows, too. Peirce felt strongly that human ‘ideas’ functioned analogously to ideas operative in the larger cosmos.

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__________________________________________________________________ The crucial position that enables Peirce to apply the concept of mental growth beyond the blatant context of human cognition lies in his hypothesis that ‘ideas are habits’ and ‘habits are rules of action.’ Defining ideas in this way allows Peirce the flexibility to apply the same term beyond the conversation of human beliefs to the physical realms of cosmic habit-taking (i.e. natural ‘laws’). Both the laws of nature as well as our human beliefs operate as ‘ideas’ because an idea is simply a habit of activity. What is the goal of this activity? Ideas, as they become increasingly more general, exert teleological direction over other habits. These habits range from human beliefs or the hardened regularities of matter. Growth, for Peirce, is possible only because ideas, as habits, have the capacity to change, as they are not governed entirely by necessity. Habits can change spontaneously, or in response to other habits. Change occurs when a habit becomes frustrated. ‘Developmental teleology’ describes the action that habits take upon being frustrated, as they seek to attain a new end, or augment previously held beliefs so that the same end can be accomplished through a different habituation. A belief functions as the most basic example of an idea. Peirce argued that the human mind commonly employs four ways of fixing a belief: tenacity, authority, taste, and shared systematic inquiry: • Tenacity clenches belief so tightly that irrespective of any data to the contrary, the belief will not be altered. Seen as a not-so-oblique synonym for stubbornness, Peirce felt this manner of ossifying a belief revealed problems of an obvious sort. • Authority fixes belief by privileging those who support a particular belief and persecuting those who reject it. Obviously, when holding beliefs for this reason, people often exert hurt, abuse, and destruction upon those that do not tow the party line. Peirce argued that the evidence concerning how reality behaves was not restricted to merely a few minds of people in positions of power. On the contrary, Peirce argued that truth is available to any mind that carefully monitors its behaviors (actively listens). • Taste asserts belief instinctively, predominately on the basis of some spontaneous appeal to the senses. Peirce argued that taste cannot establish the truth or falsity of any claim. It simply desires what it desires. • Ongoing systematic inquiry within a community, Peirce asserted, was the best way to fix our beliefs. This effort requires the solitary, finite mind to search for truth in dialogue with the experiences and insights of others.

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__________________________________________________________________ Beliefs, as ideas, guide our activities in the world, although not all beliefs manifest themselves in consciousness. A belief, insofar as it displays the operations of an idea, exemplifies a habit of response. A belief, then, functions as a habitual idea that responds to or guides our actions, depending on the conditions. Beliefs themselves are not the specific actions which arise from a particular belief. Furthermore, since beliefs function like rules that govern our actions, these habituated responses operate teleologically. That is, the habitual response of our actions is always directed towards some end. Habits dictate responses of action through bringing into fruition certain events that achieve a final end or cause. Beliefs foster general actions, given some particular circumstance. The ends we desire to achieve get accomplished through a sequence of causation that stems from our beliefs, which propel habituated actions. For example, the belief that eating organic produce will better one’s health may lead to a series of actions where one navigates to certain stores that sell such produce so that later these items can be prepared and consumed at home. Such activities might become entrenched and habitual should one desire strongly enough to achieve good health and also believe that organic produce genuinely supports such an end. Beliefs generate habits of action, and the desired ends inherent in a belief provide a direction and influence over the actions. When beliefs change, or grow, then the telos will change and grow (and vice versa). Inquiry, then, provides us with the capacity to reflect on possible beliefs, and compare them to other beliefs already held (we might call these actual beliefs). As actual beliefs generate habits of action, or habit-taking in the broadest sense, we tend only to revise our beliefs until a habitual action becomes frustrated (which Peirce believed results in ‘irritation’). When a habit of action becomes frustrated, the belief that generated it will probably be irritated by doubt. Doubt irritates belief when an already established habit of action cannot achieve its more general purpose, or end. Habits, each with a cause, also usually facilitate more general causes. Thus, when habits of action become frustrated, the irritation of belief tends to cause growth, i.e. a shift in the belief. A belief-habit in its development begins by being vague, special and meager; it becomes more precise, general and full, without limit. The process of this development, so far as it takes place in the imagination, is called thought. When we experience the ‘irritation of belief,’ also known as doubt, we usually commence some form of inquiry, however rudimentary. Seeking to accommodate the unexpected result that frustrated our habit-taking during action, we reconsider how new habits for action might better serve the achievement of our desired ends. 3. Challenges to Habit-Taking Caregivers who function out of rote habituation in their interactions with patients, especially those at the end-of-life, overlook the reality that not all patients bring the same life narrative, cultural identity, goals for care, affections, and

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__________________________________________________________________ religious understandings to the end-of-life experience and that these differences require caregivers to employ sensitive adjudication. Caregivers who conduct their practice by rote habituation overlook the desires and interests of their patients as unique individuals, and in addition, they run the risk of developing and engendering in others deficient medical/ethical/religious judgments. 3 Unreflective caregivers risk not only insensitive personal interactions with patients and families at the end-of-life, but may demonstrate especially troublesome habits referred to as ‘enlightened paternalism.’ 4 According to Philosopher Micah Hester, ‘enlightened paternalism’ demonstrates an effort on the part of the caregiver to provide care or offer help in a way judged by the caregiver to be best for the patient, without taking into account appropriately the following patient differences that may exist in a given context: religious beliefs, ethical positions, cultural understandings of the patient and family, and their goals for care as they understand them, etc. 5 Enlightened paternalism misunderstands the role of habit-taking by ossifying care into interactions previously or independently labeled as ‘good’ or ‘bad’ without participating in the larger process of truth gathering and truth-telling (which always entails ‘truth-hearing’) that occurs only when a patient’s and his or her family’s beliefs, feelings, and attitudes receive proper attention. Abraham Fuks puts the matter this way: These [forces] have resulted in enormous strains in the doctorpatient relationship, the arena for diagnostic and therapeutic interventions, and have cannibalized the medical interview, and perhaps the clinical relationship, without which medicine devolves to a mechanical and technical pursuit within a chaotic system of care delivery. 6 Much is at stake here with respect to habit-taking. Habits refer to the controlled adjustments of an individual in a specific environment to act, and these actions usually reveal tendencies that have been acquired over time. For Peirce, habits also include physical actions, as well as emotional habits, and even habits of thinking (i.e. ideas demonstrate tendencies). The guide Peirce reminds us to employ is that of the summum bonum, or telos of actions. The habitual response of our actions is always directed towards some end. Habits dictate responses of action through bringing into fruition certain events that achieve a final end, or cause. By reminding ourselves of the greater cause of our caregiving, which requires truthful patient/family interaction, we have the best chance of preserving and achieving the ends of care most desired by the affected parties. 7 My argument is that certain types of reflective habits can unite to support and demonstrate effective communication in the service of caregiving. Examples of reflective habits include: self-control, reflective thought that inspires reflective

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__________________________________________________________________ action, the capacity to suspend judgments, attentive decision-making inclusive of the patient’s wishes, the willingness to experiment and deliberate, and the courage to be present to the needs of others and still act while simultaneously acknowledging the fallibility of all parties involved. Micah Hester expertly points this out, and goes on to suggest that each of these habits can be broken down into smaller, more detailed habits. Suspending judgments requires more basic habits of patience and diligence. Deliberation engages the imagination by forming thoughtful reconstructions of a particular situation in new ways in order to foresee and plot new possibilities. Experimentation requires habits that help acquire intuitions that enable better abductive and deductive inferences. Reflective habits such as these demonstrate what Dewey calls ‘intelligence,’ and these reflective habits serve as a partial basis of what Peirce calls ‘habits of inquiry’ and ‘pragmatic logic.’ 8 Both philosophers saw these reflective habits as evidence of an imaginative process that helps make otherwise restricted habits flexible, expansive, and attentive to the possibilities of new data. The foundations of good care are formed by these reflective habits. 4. Conclusion If the caregiver predominately demonstrates unreflective habits to those at the end-of-life, then the patient becomes an extension of a machine, one that effectively ignores the unique aspects of personhood of the patient, including his/her hopes, fears, and wishes. Without reflective thinking that generates thoughtful action, caregivers close themselves off to the important differences that exist among individual persons nearing the end of life’s journey. End-of-life care, I contend, provides the paradigmatic opportunity for caregiving to exemplify the deepest levels of reflective habit-taking. To these ends, one must seek not only efficient habituations in practical matters of caregiving, but also cultivate the types of reflective habits that service helpful, moral encounters between caregivers and those at the end-of-life. This can be especially challenging in today’s contemporary clinical setting, as Abraham Fuks duly notes: The loss of the first person story is emblematic of the transformation of the patient from author and owner of the narrative, whose very uniqueness served as a means of explicating the mysteries of illness, to a passive, generic, and often solitary observer of care. The patient’s story, especially when validated by the attendant physician, aided in the reduction of uncertainty and served in the construction of meaning without which the experience of illness is fraught with fear and anxiety. All reflexive descriptions of illness, including those by physicians of their own experiences, describe the loss of control and the disorientation that accompany the inability to participate

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__________________________________________________________________ in the affairs of daily living and the uncertainty that attends the sudden, unexpected onset of illness. In those instances where we also expect the patient to be a ‘fighter’ who must ‘resist’ being ill, the state of sickness can be complicated by a feeling of having failed to achieve the suitable level of the ‘desire to win.’ Thus, we compound the injury of disease with the social insult of failure. 9 Some strategies for how to initiate the truth-telling process and begin to construct goals for treatment in a manner respectful to the patient were discussed previously. A few recommendations can be added here. First, one cannot simply presume that disclosing ‘medical knowledge’ about a terminal prognosis or a risky procedure will frighten the patient or overwhelm their hope or capacity to make judgments and decisions about their feelings and desires for care. A flimsy notion of ‘autonomy’ operates beneath the surface when caregivers see their ‘enlightened’ paternalistic actions as ethically acceptable, without argument, and on an ‘objective’ level. Does autonomy really just mean ‘consenting’ to the caregiver? These questions strike at the heart of reflective habits of caregiving, for they raise concerns about the way caregivers actually interact with their patients and about how easily the caregivers’ own attitudes, habituations, and inclinations can supplant the ends for care that the patient most desires. The latter should be driving the process of care. Furthermore, caregivers who ignore the patient’s desired ends of treatment (remember, Peirce argues that recalling and re-committing to the most desired ends of habit-taking must serve as the corrective for habituations run amuck) also ignore the precise nature of ‘health’ and what it means to heal. The human person encompasses more than just biological processes. Both the social and religious dynamics of personhood can be left totally neglected during situations of enlightened paternalism where a caregiver narrowly focuses on some medical intervention without asking the larger questions about the patient’s goals and overall life narrative. In a real sense, these other dynamics of personhood, especially at the end-of-life, also desperately require immediate attention. We need to recover from the impression, now wide-spread, that the essential problem is solved when chemical, immunological, physiological and anatomical knowledge is sufficiently obtained. We cannot understand and employ this knowledge until it is placed integrally in the context of what human beings do to one another in the vast variety of their contacts and associations. 10 Unreflective habits in medicine misunderstand the broader notions of personhood by focusing primarily on biological factors as the true measures of

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Habits of the Heart in End of Life Care

__________________________________________________________________ good health (i.e. good care), while overlooking the ways meaning-making at the end-of-life encompasses complex social processes amidst the vast domains of an individual’s life narrative. Abraham Fuks states fittingly these challenges when he concludes: The capacity to listen attentively and actively is a skill necessary to the proper practice of medicine and an integral part of the clinical method. In this context, the clinician’s capacities and habits, call them art or science, are crucial to curing, caring and healing. These are not the add-ons of a medical finishing school that provide a veneer of communication skills to make patients ‘feel good.’ The personhood of the physician is intrinsic and foundational to his capacity to relieve suffering. Lifelong learning is effectively the continual becoming and development of those clinical skills and not simply the accumulation of new knowledge. These needed skills are closer to the evolution of wisdom, or more properly perhaps, Aristotelian phronesis. It is through the deepening of the physician-patient relationship that the skills become rooted in the morality of medicine. It is through the recognition of the patient as a significant other, an alterity that has a natural right to respect and one whose personhood is at once at stake and the focal point of the obligations and duties of the doctor, that we finally discover the moral grounding of the profession. 11

Notes 1

Abraham Fuks, ‘The Military Metaphors of Modern Medicine,’ a paper presented at the Making Sense Of: Health, Illness and Disease 8th International Conference, Inter-Discplinary.Net, Oxford, U.K., 2009. Viewed on 4 November 2011, http://www.inter-disciplinary.net/wp-content/uploads/2009/06/hid_fuks.pdf. 2 ‘Reconstruction in Philosophy,’ in John Dewey: the Middle Works: 1899-1924, Vol. 12, ed. Jo Ann Boydston (Carbondale: Southern Illinois University Press, 1988), 176. 3 For more, see Edmund Pelligrino, ‘The Anatomy of Clinical Judgments: Some Notes on Right Reason and Right Action,’ in Clinical Judgment: A Critical Appraisal, ed. H. T. Engelhardt, Jr., et al. (New York: Springer, 1979), 169-194. 4 For a sound discussion of medical paternalism see Micah Hester, ‘Habits of Healing,’ in Pragmatic Bioethics, ed. Glenn McGee (Nashville: Vanderbilt University Press, 1999), 45. 5 Ibid.

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Abraham Fuks, ‘The Military Metaphors of Modern Medicine,’ 2. See Micah Hester, ‘Habits of Healing,’ 57; also see Micah Hester, ‘Significance at the End of Life,’ in Pragmatic Bioethics, ed. Glenn McGee (Nashville: Vanderbilt University Press, 1999), 113-128. This essay very skilfully presents the essence of habit-taking from Dewey’s perspective, and adds an insightful treatment of the relationship between health and healing. 8 Micah Hester, ‘Habits of Healing,’ 59. This is a masterful treatment of habits as they relate to habituation in Dewey’s work. 9 Abraham Fuks, ‘The Military Metaphors of Modern Medicine,’ 6. 10 ‘The Unity of Human Being,’ in John Dewey: The Later Works: 1825-1953, Vol. 13, ed. Jo Ann Boydston (Carbondale: Southern Illinois University Press, 1991), 336. Also see John McDermott, ‘Feeling as Insight: The Affective Dimension in Social Diagnosis,’ in Hippocrates Revisited, ed. Roger Bolger (New York: MEDCOM, 1973), 177. 11 Abraham Fuks, ‘The Military Metaphors of Modern Medicine,’ 7-8. 7

Bibliography Dewey, John. ‘Reconstruction in Philosophy.’ In John Dewey: The Middle Works: 1899-1924, Vol. 12, edited by Jo Ann Boydston. Carbondale: Southern Illinois University Press, 1988. ———. ‘The Unity of Human Being.’ In John Dewey: The Later Works: 18251953, Vol. 13, edited by Jo Ann Boydston. Carbondale: Southern Illinois University Press, 1991. Fuks, Abraham. ‘The Military Metaphors of Modern Medicine,’ a paper presented at the Making Sense Of: Health, Illness and Disease 8th International Conference, Inter-Discplinary.Net, Oxford, U.K., 2009. Viewed on 4 November 2011, http://www.inter-disciplinary.net/wp-content/uploads/2009/06/hid_fuks.pdf. Gelpi, Donald S. J. Peirce and Theology: Essays in the Authentication of Doctrine. New York, NY: University Press of America, 2001. Hester, Micah. ‘Habits of Healing.’ In Pragmatic Bioethics, edited by Glenn McGee. Nashville: Vanderbilt University Press, 1999. John McDermott. ‘Feeling as Insight: The Affective Dimension in Social Diagnosis.’ In Hippocrates Revisited, edited by Roger Bulger, 166-180. New York: MEDCOM, 1973.

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__________________________________________________________________ Pelligrino, Edmund. ‘The Anatomy of Clinical Judgments: Some Notes on Right Reason and Right Action,’ In Clinical Judgment: A Critical Appraisal, edited by H. T. Engelhardt, Jr., S. F. Spicker and B. Towers, 169-194. New York: Springer, 1979. Peirce, Charles Sanders. Pragmatism as a Principle and Method of Right Thinking: The 1903 Harvard Lectures on Pragmatism. Edited by Patricia Ann Turrisi. Albany: State University of NewYork Press, 1997. Royce, Josiah. The Sources of Religious Insight. New York: Scribner’s Sons, 1912. Reprinted with a new foreword and index. Washington, D.C.: Catholic University of America Press, 2001. Nate Hinerman is on the faculty at the University of San Francisco and Golden Gate University, and serves as a bereavement therapist at Pathways Hospice in San Francisco. He wishes to thank Abraham Fuks, M.D., for the enlightening discussions on health care, war nomenclature, and Charles Sanders Peirce that took place at Oxford, U.K., Summer 2009, the substance of which served as the primary inspiration for this essay.

The Dying: Individual Need or Professional Prerogative? David MacKintosh Abstract In 2009 The Telegraph, UK, published a letter criticising the use of the ‘Liverpool Care Pathway’ as part of the NHS ‘gold standard’ in care of the dying, by implying that its use ensured that ‘the inevitable outcome… is death.’ The letter was generally dismissed by the palliative care community. Two outcomes of this event, however, are worthy of note. First, the assessment process in the Liverpool Care Pathway (Version 12) was amended to provide a more considered approach to the diagnosis of impending death; and secondly, The Telegraph published, online, close to 450 replies, the vast majority from the general public. Of these, 35% seemed to be in agreement with the concerns expressed in the article and letter, 15% disagreed, and in 50% it was not possible to discern a clear opinion. The response of the health professions in dismissing the letter and online replies fails to acknowledge the social importance of the document as an expression of the feelings and beliefs of the individuals we serve. It is suggested that the dying continue to be processed in a manner dominated by the professions’ views of what constitutes an appropriate dying rather than listening to their wishes. Furthermore, it can be argued that the palliative care movement has made a significant contribution to this, particularly in inappropriate normalisation of death – other people’s death, that is. The dominance of death in the management of the life of the dying, as opposed to the relief of suffering, can be seen as a product of a diminished recognition of individual need. This chapter discusses some of the influences involved and the need to reassert the needs of the dying individual against the competing demands of dominant ideologies and professional power in the dying process. Key Words: Liverpool Care Pathway, suffering, death denial, individualising care. ***** 1. Introduction In September 2009, The Telegraph newspaper in the UK published an article entitled ‘Sentenced to death on the NHS. Criticising the Liverpool Care Pathway for the Dying Patient (LCP). 1 Under NHS guidance introduced across England to help doctors and medical staff deal with dying patients, they can then have fluid and drugs withdrawn and many are put on continuous sedation until they pass away. But this approach can also mask the signs that their condition is improving, the experts warn. 2

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__________________________________________________________________ The basis for the article was a letter (the Letter) published in the newspaper on the same day under the heading ‘Dying Patients.’ Included in the signatories was a professor of geriatric medicine and a palliative care physician. 3 … Forecasting death is an inexact science. Just as, in the financial world, so-called algorithmic banking has caused problems by blindly following a computer model, so a similar tick-box approach to the management of death is causing a national crisis in care. The Government is rolling out a new treatment pattern of palliative care into hospitals, nursing and residential homes. It is based on experience in a Liverpool hospice. If you tick all the right boxes in the Liverpool Care Pathway, the inevitable outcome of the consequent treatment is death. As a result, a nationwide wave of discontent is building up, as family and friends witness the denial of fluids and food to patients. Syringe drivers are being used to give continuous terminal sedation, without regard to the fact that the diagnosis could be wrong. It is disturbing that in the year 2007-2008, 16.5 per cent of deaths came about after terminal sedation. Experienced doctors know that sometimes, when all but essential drugs are stopped, ‘dying’ patients get better. 4 The thrust of the article was an assertion that use of the LCP was responsible for the untimely death of patients as a consequence of the inappropriate withdrawal of life sustaining treatment implying that the LCP is an inherently dangerous tool. Furthermore, it was alleged that the LCP encouraged a professionally non-critical, ‘tick-box’ approach to the diagnosis of dying and that starting a patient on the LCP was a ‘self-fulfilling prophecy’; that is regardless of the real diagnosis the patient would die. 5 Neither the letter nor article was greeted with much support or sympathy by the professional palliative care community known to the author, at that time working in New Zealand. Overseas, or at least in the United States, the story clearly struck a chord, coming as it did at a time when the United States was deep within its own debate about ‘statist health’ and ‘death panels’; this was reflected in the comments posted on The Telegraph’s website. 6 In the meantime while the Marie Curie

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__________________________________________________________________ Palliative Care Institute, the source of the LCP, maintained its professional dignity, support gathered. 7 While the publications of the 2nd of September created the greatest response, other articles, both before and after that date, identified a variety of concerns about end-of-life care in the United Kingdom. 8 Although much of the writing was designed to sell newspapers there was also valuable comment from highly regarded palliative care professionals. 9 However, professional posturing was soon to be overtaken by the voice of the people and within one week of publication of the letter and article over 400 individuals had emailed comments to The Telegraph website. Healthcare professionals did contribute to the debate but represented the minority of correspondents who, overall, seemed to be ordinary people, the people who believed they would have most to lose should The Telegraph have uncovered a truth. 10 As a healthcare professional it is easy to become defensive when challenged about your practice. In groups, ranks will close in mutual support against criticism and that undoubtedly happened to some extent in response to the attacks of September 2, 2009. The question that the remainder of this chapter will address is whether or not The Telegraph had indeed uncovered a truth. The answer, it will be argued, is a qualified yes, although it is not straightforward, as might be expected. 2. What the People Said By September 9, 2009 The Telegraph web site had posted 443 comments which, after removing duplicate comments, represented 431 individual comments. A small number of individuals commented on more than one occasion so the number of correspondents is less that the number of comments. The comments were subjectively categorized as being either ‘Considered’ or ‘Reactive’ and as being either ‘Supportive’ of or ‘Disagreeing’ with the tone of the article or letter. A comment was regarded as being ‘Considered’ if it looked as though some thought had been given to the content. For example: This is indeed a difficult issue. I am surprised, however that people would believe that such things only occur under the British NHS. Doctors and hospitals (and families) must make such decisions in the US and everywhere there are dying patients though they do not have a name for the policy.

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__________________________________________________________________ And: When I first read about Liverpool Pathways I was appalled… I had serious misgivings yet I would never have believed how bad it would all be… She was eventually dispatched using ever increasing doses of morphine… she had been taken off food and water for some days before. ‘Reactive’ included comments such as: ‘What’s next… round up all, the homeless, put them in a room and deny food and water’ and: ‘This is why we don’t want Obamacare in the USA. No eugenics please.’ ‘Supportive’ comments, in that they agreed with the concerns expressed in the newspaper, included: Those who have chronic conditions like MS [Multiple Sclerosis]… are particularly vulnerable… They can live a long time though there is very little they can do, and who among us has the right to say it is time for them to die. And: Yes, ‘helping people die, as you state is EUTHANASIA!... We, the general public are not stupid, Sadly we only really understand exactly what has happened after we have lost a loved one to LCP,… Views contrary to those expressed in the Telegraph were categorized as ‘Disagreeing.’ These included comments specifically relevant to the LCP and also about the inevitability of death: This article misses the point of what palliative care is about and the ethos of the LCP… a piece of paper which ensures best care to all patients at the end of life… The LCP won’t make a person die And: … The criteria for use is that ALL possible causes for current condition have been considered… The LCP is not a tool for euthanasia. It is merely a tool to help people die with dignity and without the discomforts usually associated with death.

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__________________________________________________________________ Specific reference was made to the LCP as the ‘LCP,’ ‘Liverpool’ or ‘Pathway in a relatively small number of comments, 37 out of 431. Other significant concerns mentioned were ‘euthanasia’ 21, ‘dignity’ 15 and ‘murder’ 33. Overall, in the comments which could be categorized, 35% expressed concerns about end-of-life care, what they had witnessed or what they feared might happen, and 15% seemed to believe that the system had served them or would serve them adequately. In the other half it was not possible to discern a clear opinion. Clearly the categorization of the responses was made on very subjective grounds and considerable caution should be exercised with the numbers quoted. However, the tone of the complete body of comments, if read in that manner, is undoubtedly one of concern; while the quality of correspondence and debate was often not high there were numerous expressions of distress and fear. The considerable contribution from the USA was also a reflection of concerns about the developments in the healthcare system in that country at that time. The fact that people might be poorly informed or bigoted should not detract from the significance of the correspondence as an important social document reflecting the concerns of the population healthcare professionals serve. The people have had their say, but were there any grounds for their concern? 3. The LCP and the Dying Process The Liverpool Care Pathway for the Dying Patient was developed more than a decade ago in an attempt to bring some of the skills of specialist palliative care providers to generalist services that lacked some of these skills and had limited or no access to specialist palliative care providers. 11 It is essentially a system of documentation to ensure that all elements of care required by the dying patient are provided. It is intended for use in the last 2 to 3 days of a person’s life and is currently in its 12th version. Central to that process is making the diagnosis that the patient is actually dying. Up until version 11, which was current in September 2009, the initial step was: The Multi Professional Team have agreed the patient is dying, has two of the following symptoms and all other reversible causes have been ruled out: Please tick those that apply [only 2 required]. The patient is bed bound Only able to take sips of fluids

Semi-Comatose No longer able to take tablets 12

It really was as simple as that; a process that, with hindsight, seems to be incredibly naïve and open to poor interpretation. It would seem that the public might have had some grounds for concern.

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__________________________________________________________________ As a document, the LCP is under constant review; review of Version 11 had started in 2007 and in September 2009, Draft 10 of Version 12 (dated September 10) was circulated for scrutiny. Among the important changes presaged in the draft was a significant enhancement of the process of diagnosing that the patient was actually dying and that there was nothing that could or should be done to alter the course of the disease. Version 12 included an extensive algorithm for reaching that conclusion, replacing the tick-box method with a more searching and rigorous assessment process. 13 The Letter and a number of Comments in the Telegraph made reference to and expressed concern about the withdrawal of fluids when starting on the LCP. The Draft contained the following caution: The use of the LCP does not preclude use of antibiotics or artificial nutrition or hydration but it does ask the professional to consider an appropriate decision for that moment in time and the health professional is asked to document the reason for decisions made. 14 By the time the final version of Version 12 was released, December 2009, that had been further modified: The LCP does not preclude the use of clinically assisted nutrition or hydration or antibiotics. All clinical decisions must be made in the patient’s best interest. A blanket policy of clinically assisted (artificial) nutrition or hydration, or of no clinically assisted (artificial) hydration is ethically indefensible and in the case of patients lacking capacity prohibited under the Mental Capacity Act (2005). 15 The shift in attitude from version 11 to the Draft was significant but the shift from the Draft to the final version of Version 12 was enormous. The Draft had certainly moved from Version 11 but still required the clinician to justify, in writing, why the decision had been made. It had been a struggle, but by the time Version 12 was formally released the LCP had found a form of expression that looked as though it was serving the needs of individuals rather than a requirement to conform to a preconceived ideology. To try to understand why it had been such a struggle some attention should be paid to the history of palliative care and its philosophical approach. The LCP had indeed been trapped by an ideology. Palliative care rightly recognizes that dying is a normal process and maintains that it neither hastens nor postpones death. Historically, the palliative care movement grew in an

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__________________________________________________________________ environment where the dying were poorly served, often ignored and inadequately treated. The modern palliative care or hospice movement grew in response to a perceived need to provide care where previously there had been little. However, at some point in its evolution the emphasis changed. The movement continued to provide good and compassionate care but the concept of normalization of death and a need to fight against death denial grew in importance until pursuit of this ideological goal became the dominant force in care provision. Patients were being required to fit the ideological goals of the palliative care movement, a thesis addressed by Zimmermann who argues that the goal of care is relief of suffering and not the ideological struggle against death denial – if it exists at all. 16 This therapeutic disenfranchisement of ordinary people is reflected, but not directly recognized, in the fears expressed by the letter writers to The Telegraph. At its worst, the palliative care movement can be said to have lost sight of its real goal and the declaration made in version 12 of the LCP is a testament to that. However, there is another element to be considered, that of medical power, and it is this topic the chapter will now address. 4. Influencing the Time of Death It would be unfair to condemn the LCP. The concept of a structured pathway is a sound one and the principles it promotes are good and honorable, and there is no doubt that its intention was and is to improve the care of the dying. The tool itself is not responsible for outcomes although its structure can, and probably has, influenced how it is interpreted and used and as a consequence affected outcomes. The author has worked with both Version 12 and some of its predecessors over a number of years in what he believes to have been a considered and ethical way that gave precedence to the needs of the dying and their care-givers, that he did what was right, and there’s the rub, as they say – we all believe we are doing what is right. Palliative care finds itself in a difficult position in this regard. In a curative model the goal of care is clear, to cure or control disease. There are certainly nuances of decision making regarding competing approaches but, in general, the curative model is not significantly challenged ethically until questions of risk versus benefit, or treatment withdrawal arise – decisions where the outcome may influence a person’s life expectancy. In the palliative model, the die has been cast; both the patient and healthcare providers understand that the patient’s death will occur in the near future, but how and when? One cryptic answer is – at the right time and for the right reason; and one of the challenges of end-of-life care is to deliver care under these terms. As noted above, however, we all believe we are doing what is right; sometimes it comes down to ‘my ideology is better than yours’ and how doctors, in particular, can act to influence the time of death is one aspect of this.

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__________________________________________________________________ Seale, in 2009, reported the results of a survey exploring medical end-of-life decision making in which little evidence was found to suggest that doctors were acting deliberately with the intention to end or significantly shorten life, although continuous deep sedation was used in 16% of deaths, a higher proportion than in other countries. 17 However, this situation is not uniform. In Australia, Kuhse and colleagues reported that in 30% of deaths a medical decision was made with the explicit intention of ending life of which 4% were at the patient’s direct request. This was used as part of an argument in support of legalizing euthanasia – it’s happening anyway so it might as well be legal. 18 In New Zealand, Mitchell and Owens’ survey of general practitioners revealed that 63% of responding GP’s had made an end-of-life decision that they considered would shorten the patient’s life; these decisions were made in the belief that the decision would probably shorten life (61.8%), or partly or explicitly hasten death (32.6%). 19 What can be concluded from these reported findings? Taken at face value these figures appear quite alarming but in practice it is difficult to know what influence the medical decision actually had in determining the timing of death. What is alarming is that, regardless of the clinical reality, so many doctors appear willing to act with the intention of shortening life. Although Seale’s findings are less alarming in regard to intention to shorten life the use of continuous deep sedation is a cause for concern. Loss of capacity to communicate, an inevitable consequence of successful deep sedation, ensures social death regardless of its influence on physical death. How has medical practice come to this point? Is this new? Has the palliative care movement influenced the process by its emphasis on normalizing death? The answers to these questions are not readily available but there is no doubt that medical practitioners personal views about what constitutes a ‘good death’ or ‘the right time and right reason’ are highly influential. Furthermore, Kaplan, although writing about medical murderers such as Shipman, alludes to the personality profiles of doctors and their narcissistic tendencies, suggesting that the power to influence the timing of death is attractive to some or possibly many. 20 Although the medical profession is not populated by serial murderers, perhaps, at times we are all sufficiently narcissistic. 5. In Conclusion Do the fears given voice in The Telegraph articles and correspondence reflect the true state of affairs in end-of-life decision making? On the basis of the information presented in this chapter, the answer is probably yes, and the redrafting of the LCP (Version 12) would seem to confirm that. For a variety of complex and contentious reasons, the dying are particularly vulnerable to manipulation and disregard from both health professionals and family members or care-givers; adding to this mix a care system, palliative care, driven at least in part

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__________________________________________________________________ by ideology, risks further reduction in our regard for individual need as opposed to professional prerogative. However, despite apparent professional indifference to lay communication in the press it seems likely that, in this case, real and significant change has come about.

Notes 1

Kate Devlin, ‘Sentenced to Death on the NHS,’ The Telegraph, http://www. telegraph.co.uk/health/healthnews/6127514/Sentenced-to-death-on-the-NHS.htm. 2 Ibid. 3 ‘Dying Patients,’ The Telegraph, http://www.telegraph.co.uk/comment/letters/ 6133157/Dying-patients.html. 4 Ibid. 5 Ibid. 6 ‘UK’s NHS Liverpool Care Pathway Looks an Awful Lot Like a Death Panel From Here,’ NewsBusters.org,’ http://newsbusters.org/blogs/tom-blumer/2009/ 09/03/ uks-nhs-liverpool-care-pathway-looks-awful-lot-death-panel-here. 7 ‘Care Not Killing: Liverpool Care Pathway,’ http://www.carenotkilling. org.uk/ ?show=842. 8 Nigel Bunyan and Rebecca Smith, ‘Pensioner Died after being Wrongly put on Death Pathway,’ The Telegraph, http://www.telegraph.co.uk/news/uknews/ 6311473/Pensioner-died-after-being-wrongly-put-on-death-pathway.html. Chris Irvine et al., ‘Daughter Claims Father Wrongly Placed on Controversial NHS End of Life Scheme,’ The Telegraph, http://www.telegraph.co.uk/health/healthnews/ 6156076/Daughter-claims-father-wrongly-placed-on-controversial-NHS-end-oflife-scheme.html. Kate Devlin, ‘Families being Wrongly Burdened with Life or Death Questions over Loved Ones,’ The Telegraph, http://www.telegraph.co.uk/ health/healthnews/6174296/Families-being-wrongly-burdened-with-life-or-deathquestions-over-loved-ones.html. 9 Ibid. 10 Devlin, ‘Sentenced to Death on the NHS.’ 11 John Ellershaw and Carol Kinder, ‘How to Use the Liverpool Care Pathway for the Dying Patient?’ in Care of the Dying. A Pathway to Excellence (Oxford: Oxford University Press, 2003), 11-41. 12 ‘download78.pdf,’ http://www.yacpalliativecare.co.uk/ documents/download78. pdf., 2. 13 ‘LCP_V12_Core_Documentation_FINAL,’ http://www.liv.ac.uk/mcpcil/liver pool-care-pathway/Updated%20LCP%20pdfs/LCP_V12_Core_Documentation_FI NAL_%28Example%29.pdf., 6. 14 ‘LCP-v12-for-consultation.pdf,’ http://www.mcpcil.org.uk/pdfs/LCP-v12-forconsultation.pdf., 3

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__________________________________________________________________ 15

‘LCP_V12_Core_Documentation_FINAL_(Example).pdf., 5. Camilla Zimmermann, ‘Death Denial: Obstacle or Instrument for Palliative Care? An Analysis of Clinical Literature,’ Sociology of Health & Illness 29.2 (March 2007): 297-314. 17 C. Seale, ‘End-of-Life Decisions in the UK Involving Medical Practitioners,’ Palliative Medicine 23.3 (April 2009): 198-204. 18 H. Kuhse et al., ‘End-of-Life Decisions in Australian Medical Practice,’ The Medical Journal of Australia 166.4 (February 17, 1997): 191-196. 19 Kay Mitchell and Glynn Owens, ‘End of Life Decision-Making by New Zealand General Practitioners: A National Survey,’ The New Zealand Medical Journal 117.1196 (June 18, 2004): U934. 20 Robert Kaplan, ‘The Clinicide Phenomenon: An Exploration of Medical Murder,’ Australasian Psychiatry: Bulletin of Royal Australian and New Zealand College of Psychiatrists 15.4 (August 2007): 299-304. 16

Bibliography Bunyan, Nigel, and Rebecca Smith. ‘Pensioner Died after being Wrongly put on Death Pathway.’ The Telegraph. Viewed 17 August 2011. . ‘Care Not Killing: Liverpool Care Pathway.’ . Devlin, Kate. ‘Families being Wrongly Burdened with Life or Death Questions over Loved Ones.’ The Telegraph. Viewed 17 August 2011. . ———. ‘Sentenced to Death on the NHS.’ The Telegraph. Viewed 17 August 2011. http://www.telegraph.co.uk/health/healthnews/6127514/Sentenced-to-death on-the-NHS.html>. ‘download78.pdf.’ Viewed 17 August 2011. . ‘Dying Patients.’ The Telegraph. Viewed 17 August 2011. .

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__________________________________________________________________ Ellershaw, John and Carol Kinder. ‘How to Use the Liverpool Care Pathway for the Dying Patient?’ In Care of the Dying: A Pathway to Excellence, 11-41. Oxford: Oxford University Press, 2003. Irvine, Chris and Kate Devlin. ‘Daughter Claims Father Wrongly Placed on Controversial NHS End of Life Scheme.’ The Telegraph. Viewed 17 August 2011.

Kaplan, Robert. ‘The Clinicide Phenomenon: An Exploration of Medical Murder.’ Australasian Psychiatry: Bulletin of Royal Australian and New Zealand College of Psychiatrists 15.4 (August 2007): 299-304. Kuhse, H., P. Singer, P. Baume, M. Clark and M. Rickard. ‘End-of-Life Decisions in Australian Medical Practice.’ The Medical Journal of Australia 166.4 (February 17, 1997): 191-196. ‘LCP_V12_Core_Documentation_FINAL_(Example).pdf.’ Viewed 17 August 2011 . ‘LCP-v12-for-consultation.pdf.’ Viewed 17 August 2011. . Mitchell, Kay and Glynn Owens. ‘End of Life Decision-Making by New Zealand General Practitioners: A National Survey.’ The New Zealand Medical Journal 117.1196 (June 18, 2004): U934. Seale, C. ‘End-of-Life Decisions in the UK Involving Medical Practitioners.’ Palliative Medicine 23.3 (April 2009): 198-204. ‘UK’s NHS ‘Liverpool Care Pathway’ Looks an Awful Lot Like a Death Panel From Here,’ NewsBusters.org. Viewed 17 August 2011. . Zimmermann, Camilla. ‘Death Denial: Obstacle or Instrument for Palliative Care? An Analysis of Clinical Literature.’ Sociology of Health & Illness 29.2 (March 2007): 297-314.

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__________________________________________________________________ David MacKintosh is a Palliative Care physician working in New South Wales, Australia. The presentation uses a short (5 minute 20 second) audiovisual presentation, ‘Leaving.’

So Far and So Close: The Challenge of Death Abílio Oliveira and Rute Rodrigues Abstract Birth and death awaken in us enormous curiosity and apprehension. To know that one day we'll die contributes to death being feared, hidden, silenced or ignored. We may try to escape or push it away, but death remains (uncomfortably) close by. Most likely, dying takes place away from family at hospital, where, despite the scientific advances and good health care, fear of death still reigns. We associate death with images of funerals, pilgrimages, worships, tombs, wills or mourning. Its representations are anchored in knowledge, culture, religion, ideology and person concepts. We investigated the representations of death among future health professionals (medical and nursing students) who try to avoid the death of others in a public context (hospital); and we investigated those who question life through death (biology students) in a population of approximately 300 participants. In a first study, we determined the dimensions of thoughts, feelings and images about death, then analysed them according to the course and sex. Subsequently, we conducted an experiment focused on the influence of the social context of death (with short films showing the death of someone in private or in a hospital surrounded by family or by health professionals) and on the way death is perceived, considering two experimental conditions and a monitoring condition (without film). All participants answered a questionnaire. We found a strong similarity in representations of death between women and nursing students as they evidenced emotional involvement, closeness to the other and a practical/ritualistic sense; and also between the representations of men and future doctors, who showed more emotional distancing and resistance to death, as if death were controllable. Particularly in the private context, death evokes a strong sense of malaise. By contrast, in the control condition, death is it is viewed with detachment, as if it were deferrable and impersonal. Key Words: Death, representations

dying,

life,

health

professionals,

social

context,

***** 1. Introduction Birth and death awaken in us great curiosity and apprehension. Death is the ultimate challenge. Its power is overwhelming, inevitable, omnipresent, and undeniable. Someday we will die. 1 Not knowing when or how, combined with the common idea that in a merciless way death separates us from life and from those whom we love increases our overwhelming fear of mortality. Oddly enough, the

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__________________________________________________________________ more science progresses, the more we deny death, realizing that even medical science can only postpone it. 2 We live in a fast-paced consumer society that, on the one hand, presses us to look young, active, healthy and inviolable in a relentless pursuit of an unachievable happiness, yet, on the other hand, denies us our own death, ashamed at what cannot be prevented or controlled. In Western societies, until the beginning of the 20th century, all people faced their mortality with acceptance and calm, preparing in advance their final moment, a ‘familiar death,’ surrounded by friends and family according to the ars moriendi. 3 Although it was a public ceremony, it used to occur in the bedroom of the dying, in a private social or family context. Over the centuries, we came to terms with the idea that death was an individual rather than collective event, and the notion of ‘death of oneself’ emerged. In the18th century, particularly during the romantic era, with the promise of eternal love, the ‘death of the loved one’ generated a great fear of separation, a profound sadness and an extensive mourning. Death became omnipresent in mourning, rituals, memories and pilgrimages to the cemeteries. We are so close...and yet so far from death. With the improvement of medical care and technology, the family has been set away from the dying person. 4 But the family itself tends to detach from loving one who may be in real suffering. It is always difficult to deal with our emotions, because we didn't learn how to do it. In most cases, we are not prepared to discuss feelings or even to stay close in giving comfort. So we hesitate to act in ways that express the best options for all involved in the dying process. Once we realized that death can equalize us, no matter our status, age, position or class, it became a lonely and impersonal process, a taboo, forbidden from our daily life. 5 The western dominant representations of death mainly derive from the perspectives of science and the Judeo-Christian tradition (Catholic). Younger people especially seek out logical reasons in reincarnation and other spiritual perspectives. Dying, as showing or sharing feelings, like pain, became shameful. The medicine and new technologies offer us greater hope of living but can't save us. 6 In this fast-paced world, which hides or flees from what threatens it, the most common death occurs by accident, sickness or old age, in an intensive care unit or a hospital ward where we are identified by numbers, not as beings who think and feel, losing all power of decision in the hands of nurses and physicians. 7 The closing of a curtain may indicate that behind it, someone feels alone, confused, insecure, sad, angry, disrespected or desperate, hidden in his last moments from other people’s looks and feelings. Despite progress, particularly in palliative care, this is still a typical situation, which makes it very difficult to face death calmly and honestly. Even though death happens in a social public (hospital) context, it is lived in privacy or isolation.

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__________________________________________________________________ The way how we (don’t) face death, also reveals the failure of our project of modernity. We hesitate to stop and look at death, acting as if we were immortal. It is hard to understand or accept that someone, even if it is our family or friend, could confront us with their emotions of sorrow or grief after the death of someone close. This contrasts with the noise of the media and the seventh art, which emphasizes the spectacular and the banal, reporting the abstract deaths of dozens or hundreds of people in some far country... Paradoxically, in the case of a public figure’s departure or a hero, especially if he (or she) dies young, death is glorified, immortalized, 8 as if the dead person was still alive. Reflecting on death involves values, beliefs, attitudes, positions, cultures, and ideologies, and it requires us to consider how we think, feel and act in everyday life. It is important to compare the death representations among biology students 9, and medical and nursing students. These health professionals in various ways work against death and try to avoid the death of the other as they deal with dying in a public social context. 2. Research Plan, Main Objectives and General Hypotheses This research, framed on the social representations 10 theory, 11 encompasses two studies – the first is exploratory, and the second is experimental – and aims to: • identify the ideas, emotions and images that structure the representations of death in a population of university students of both sexes – first study; • verify how these representations vary according to gender and university course (medicine, biology and nursing) – first and second study; • verify if the representations of death are sensitive to different social contexts: public (hospital) or private (family) – second study. In general, the death of a patient generates greater emotional response from nurses than from doctors, although both try not to reveal emotions or feelings. 12 This is in part because nurses’ provide hands-on health care and are in general closer to patients than the physicians. 13 So, we expected that nursing students and women would reveal greater affective-emotional involvement with death than the others. 14 3. Method 1) Exploratory Study A population of 131 college students of medicine, nursing and biology, women and men, with the average of 20 years old, participated on the first study. Sex/gender and university course were the main (independent) variables.

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__________________________________________________________________ We presented a questionnaire with several open questions, including: ‘Death makes me think of...’; ‘Death makes me feel...’; ‘Death makes me think about the following symbols/images….’ These statements corresponded to different stimuli, to which the participants responded individually and anonymously by the free association of words, especially simple words or phrases (in a free text). All responses were reduced in terms of occurrence and took into account any verbal or semantic similarities. 15 Thus, in every sentence, there were selected the words that are really meaningful for the study, with others being ignored; 16 all nouns and adjectives were set to the masculine singular, and all words found both in singular and plural were adjusted to the singular, 17 with only a few exceptions 18 where this reduction did not make sense. 19 The data was processed through factorial correspondences analysis (FCA). 20 The factors obtained after this procedure were interpreted as (significant semantic universes or) the main dimensions, constituting our dependent variables. 2) Experimental Study A population of 169 college students of medicine, nursing and biology from Lisbon participated on the second study. A questionnaire was distributed that posed closed questions (opinions, beliefs, emotions, sentiments, behaviours, images and symbols associated with death), 21 including a list of 44 items 22 (cf. Table 1) where participants were asked: ‘To what extent does death make you think, feel, imagine or symbolize…’ 23 Other items in the questionnaire were designed to evaluate how a death situation influences the thought about dying; 24 and still other items inquired about dying as each subject imaged it in reference to religiosity 25 and beliefs. 26 Each student participated in one of three situations before responding to the questionnaire: in the private (or family) condition context (where there was a short film showing the death of a person surrounded by family); in the public or hospital setting condition (with a film that shows the death of a person surrounded by doctors and nurses), 27 or in the control condition, with no film, where participants just answered the questionnaire. Here, the experimental context was another important independent variable. The data obtained from all these items was subjected to principal component analyses (PCA) in which we extracted the significant dimensions that corresponded to the dependent variables. The effects of independent variables – experimental context, college course and sex – on the dependent variables related to emotional dimensions, cognitive, consequential, ideological/sacred, religious, imagery, symbolic and ritualistic - were analysed using analysis of variance (ANOVA).

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__________________________________________________________________ Table 1: Classification of some words, by alphabetical order, on the questionnaire. Consensual words 28 1. Ideas or 2. Emotions or Thoughts Feelings crying anguish ending anxiety life confusion mourning curiosity tears depression unknown despair evil fear impotence lost peace revolt small thoughtful

3. Images or Symbols church cross devil fire flowers god grave hell sickle skeleton skull sky

Not consensual words 1. & 2.

1. & 3.

empty loneliness longing loss pain sadness suffering

black cemetery coffin darkness land/dust

4. Main Results 1) Exploratory Study The thoughts the subjects most mentioned about death (ending, solitude and sadness) invoke the idea of a sad and lonely end. 29 The one who stays feels the loss of the loved one. Men, positioned as outside observers, represent death in a concrete way, while women appear to be more directly involved. Students of biology, like good spectators, anchor their observations in science, whether in respect of death or the after death. The future doctors also react like viewers of the emotions that they observe, not getting personally involved, contrasting to future nurses, and women in general, who reveal themselves as more emotionally involved. All stated emotions or sentiments that emphasize malaise and negative attitudes towards death (cf. Table 1). Death not only causes great sadness, 30 but also fear facing the powerlessness, distress or anxiety to what we cannot predict or control. Women subjects expressed emotions in a more intense and internalized way than men, who were revolted by the uncontrollability of death (and life). The biologists are the more interrogative, in contrast to future nurses, who clearly denote malaise and despair. Future doctors, and men, felt angry, alone and powerless in the face of what transcended their knowledge and capacity to control. The most frequent words concerning images or symbols (cross, cemetery, coffin, skull and flowers) lead us to ideological universes, symbolic and religious rites and cemeteries. This reminds us of the importance of funerals and burial

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__________________________________________________________________ rituals in the awareness of the death of others and one’s own mortality. Women and future nurses attended to dimensions of the sacred, religiosity and social practice. Instead, men and future physicians used concrete images, while biologists express a more profane view. 2) Experimental Study The differences observed among university students (cf. Table 2), and between men and women (cf. Table 3), are even clearer than in the exploratory study. There is a strong similarity between the representations of women and nursing students, as well as between the conceptions of men and of medical students. The social groups who deal closely to death, working directly with people/patients 31 (medicine 32 and specially nursing), 33 are those who reveal more emotions. Biology students 34 became curious, but not emotional or personally involved. Their perceptions are closer to those of medical students than to nursing students. The future nurses also gave evidence, as in the case of women subjects, 35 of a sense of practice and a religious/ritualistic dimension. 36 The future physicians clearly deny death, perceiving it is an interdiction (cf. Table 2). 37 How do we explain this? 38 Table 2: The influence of the university course in perceptions of death Nursing Medicine

Biology

Reveal an intense emotional involvement. Reveal a strong discomfort. Dimensions of social practice, ritualism and religiosity. Relative indifference to the death (of themselves). Seem to observe the emotions that others express. Feel alone, powerless and angry, before the uncontrollability of death. Curious observers but emotionally distant from death. Questioning life and death. Dimension of the profane.

In short, women bind to the social perception more than men, 39 showing a practical and emotional involvement facing death. Men perceived crying or tears a weakness or exaggerated sensitivity. Considering the university course, we find that future doctors 40 are most frequently those who look at death with a certain personal detachment (cf. Tables 2 and 3).

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__________________________________________________________________ Table 3: The influence of the sex/gender in perceptions of death Men Women

Relative indifference to the dying and death (of themselves). Represent the externalization of pain for the loss of a loved one. Revolt against the inevitability, or uncontrollability, of death. Reveal an intense emotional involvement. Represent the internalization of pain for the loss of a loved one. Dimensions of social practice, ritualism and religiosity.

Among the main results we verified on this experience, the most important relates to the influence of the context (cf. Table 4). In the absence of context 41, death is represented as a distant possibility, remote and abstract, without causing considerable emotional distress. This is the typical scenario of death as a social interdiction. Here, participants firmly ask why we have to die, but consider their own dying as something very improbable, imagining they are protected from this underlying reality and thinking that it only happens to others 42. A strong sadness or malaise is the only dimension 43 that was just evidenced in the two experimental contexts. The short films have truly unveiled death, exposing it as an undeniable reality. The situation of death in private, within the family, more than the death in the hospital, induced an intense emotional reaction, giving death a familiar face and revealing it as a close event, an undeniable phenomenon. Table 4: The influence of the context on the perceptions of death Experimental condition - private or family context Death as a very close and real possibility to the participants, or to those who are closest to them. Great emotional involvement and deep feelings of uneasiness/sadness. Very strong sense of helpless and uncontrollability. Death is viewed in an acceptable way. Representation very personal and not merely abstract, unlikely or distant. Experimental condition - public or hospital context Death as a close and real possibility to the participants. Emotional involvement and deep feelings of uneasiness/sadness. Strong sense of helplessness and uncontrollability. Death is viewed as something undesirable and uncomfortable. Representation personal and not merely abstract, unlikely or distant. Control condition - without experimental context (no film) Death as a remote possibility, controllable and unlikely or deferrable. Emotional detachment. Abstract questioning of the meaning or purpose of death. Abstract representation, symbolic or impersonal. Death as a social interdiction or taboo!

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__________________________________________________________________ The images enhanced the reactions of uncontrollability, incapacity and powerlessness before death, in particular in the private context. The film showing someone dying accompanied by close family emerged as a much sadder situation than the other in the hospital context, where someone, equally anonymous, dies surrounded by healthcare professionals, who are trained to cure and save lives, but who are also powerless in this case to prevent death. The first situation was considered to be more acceptable and natural than the other. It evoked a deeper sense of human solidarity and of sharing of feelings. 5. Conclusions The majority of participants 44 prefer not to think about what can disturb them, so, in a first talking, they said they don’t consider death as a problem. When we ask them about various items regarding dying and death, however, the fear appears. They try to ignore or hide death by avoiding the emotions that are contrary to the social appeal to stay young, healthy, active, productive, beautiful and happy, hoping for a long and pleasant life. 45 In addition, we noticed that thoughts and feelings of uneasiness, end, loss, grief, sadness, pain and suffering, are very common as other central representations of death. 46 Anguish, depression and despair, associated to loneliness (in the moment of dying or when someone approaches death) are other very relevant perceptions. As well as revolt, tears or crying, viewed as ways of observing or expressing suffering or sadness. We also determined several emancipated 47 representations 48, characteristic of certain social groups, as we described before. It is easier to imagine a symbolic or impersonal death than to reflect on our own death. In a hurry-up society, always in the vertigo of emotions, information, and easy consumption, we tend to search on the outside for something that we can only find in the inner self. We all tend to hide the death that occurs in the hospital but none of us want to go there or stay there as a patient. Nonetheless, no matter how well we veil our fears or distress we can really expect to die someday in the hospital or on the way there. Death, pain, disease, and aging, clearly demonstrate our bodily fragility, and our psychological susceptibility. They reveal that we are unable to rule our destiny and reflect the failure of our ‘modus vivendi’ or ‘paradigm of modernity.’ We seem to live with the illusion of physical immortality, but is this what we want? Is it life or death that we fear the most? 49 Perhaps by acknowledging death we might diminish the sadness, decrease pain and overcome the suffering that erodes us inside. Maybe then we can recognize in life a magnificent sense and completely devote ourselves to the present tense, to better communicate, learn and teach, without fearing the designs of fate that we are building. Perhaps one day we will have a broader view of our reason for ‘being,’ of the role we have to play and we will acknowledge, without hesitation, that all of us are

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__________________________________________________________________ linked together in nature on this indivisible Earth. Death will no longer be a forbidden reality, and life will not frighten us, anymore. Maybe then, as in a mild sunrise, we shall encounter, within ourselves, the longed-for eternity. 50

Notes 1

Philippe Ariès, História da morte no ocidente (Lisboa: Teorema, 1989); LouisVincent Thomas, Mort et pouvoir (Paris: PBP, 1978). 2 Elizabeth Kübler-Ross, On Death & Dying (New York: Simon & Schuster, 1969); Robert Kastenbaum and Ruth Aisenberg, Psychology of Death (New York: Springer Publishing Company, 1976). 3 Ariès, História da morte no ocidente. 4 Robert Kastenbaum, Death, Society and Human Experience (Boston: Allyn & Bacon, 7th ed., 2001); Edgar Morin, O Homem e a morte (Lisboa: Publ. EuropaAmérica, 1988). 5 Mary Bradbury, Representations of Death (London and New York: Routledge, 1999); Abílio Oliveira, O Desafio da Morte (Lisboa: Âncora editora, 2008). 6 We live for the immediate pleasure, appearing to be active, powerful, beautiful, young… wrapped in concerns and obligations, hiding, delaying, or running away from disturbing situations, and death seems to destroy everything without mercy. 7 Mary Bradbury, Representations of Death; Robert Kastenbaum, Death, Society and Human Experience. 8 Abílio Oliveira, O Desafio da Morte; Abílio Oliveira, Ilusões na Idade das Emoções (Lisboa: F. C. T. / Fundação Calouste Gulbenkian, 2008). 9 These students investigate the life and death. 10 Serge Moscovici, La psychanalyse, son image et son public (Paris: P.U.F., 1961); Serge Moscovici, ‘Notes towards a Description of Social Representations,’ European Journal of Social Psychology 18 (1988): 211-250. 11 Serge Moscovici, ‘On Social Representations,’ in Social Cognition-Perspectives on Everyday Understanding, ed. Joseph Forgas (London: Academic Press, 1981), 181-210. 12 Robert Kastenbaum, Death, Society and Human Experience; Abílio Oliveira, O Desafio da Morte. 13 Caring is more identified with the female role, given the prevailing values and tasks that society has assigned (historically) to women. 14 Lígia Amâncio, Masculino e Feminino: A Construção Social da Diferença (Porto: Afrontamento, 1994); Abílio Oliveira, O Desafio da Morte. 15 E.g. sad and sadness were reduced to sadness. 16 Such as some articles, for example. 17 E.g., skull and skulls were considered as skull. 18 It is the case of flowers instead of flower.

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__________________________________________________________________ 19

With this treatment, and since we didn't proceed to any categorization or classification, it may have remained as words with similar meanings. 20 Abílio Oliveira, O Desafio da Morte; Abílio Oliveira, Ilusões na Idade das Emoções. 21 Each item was measured from 1 (nothing, meaning that the subject didn’t agree at all with that item/question) to 5 (very much, when a participant agrees, very much with what he was asked for). 22 Items derived from the exploratory study, and considered as: 1 – thoughts or ideas associated with death; 2 – feelings or emotions; 3 – images or symbols, and words considered in both 1 and 2, and in 1 and 3. 23 This (big) question was accompanied by a list of items (one for line), such as anguish, crying, darkness, ending, pain, sadness, pain, etc. (each of these items was also measured from 1 to 5). 24 ‘In what extent a situation of death makes you think on...’ Then there were several items associated with this question, for example: death in itself, death of myself, death of a near friend, a parent, etc. 25 Mary Bradbury, Representations of Death; Robert Kastenbaum, Death, Society and Human Experience; Edgar Morin, O Homem e a morte; Edwin Shneidman, ‘You and Death,’ Psychology Today 5.1 (1971): 74-80. 26 As an example, we asked this young population if they believe in some kind of life after death, if they considered whether we have soul and spirit, if they feel disturbed when someone shows grief or mourning signs, etc. 27 This short film was shown in our presentation in the conference. 28 Words that were referred to only as ideas or thoughts, emotions or feelings, images or symbols. 29 With a sense of separation from ‘the other.’ 30 Mentioned by 65% of the participants. 31 Lígia Amâncio, Masculino e Feminino: A Construção Social da Diferença. In a hospital, the main role assigned to nurses is to care for and treat patients, according to the physicians’ recommendations and prescriptions. 32 This identity of nursing – the dominated group – is deeply associated with the gender functions historically attributed to women (and to attributes/values that are typically interpreted as feminine), to which society assigns a minor importance. 33 The more socially valued qualities are associated with male gender, such as knowledge and power, and these are also attributed to physicians – the dominant group. 34 They are positioned between the medicine students and nursing. 35 Although women are the majority in all courses (77% of the population) is only in the nursing vocabulary that we find typically feminine dimensions.

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__________________________________________________________________ 36

For the dictionaries to become more feminized, there should be not just more women, but also a professional context that evokes feminist dimensions. 37 Given their academic/professional training, the denial of death can be a form of protection against future failures (where you cannot cure or prolong life), which instead of being seen as natural facts are first regarded as failure. 38 If doctors keep some emotional distance from the dying, they will not feel their problems with regard to pain, anxiety, grief and fear. This is not a comfortable situation for a physician, a patient or for any person in general. 39 Society doesn’t facilitate the externalizing of emotions, especially to men, because that behaviour is not seen as ‘masculine.’ 40 With the richer and more diverse vocabulary (among all students). 41 On the control or monitoring situation, with no film. 42 Others that are not close to us, emotionally. 43 This emotional dimension is the most important in the representations of death. 44 With the age average of 21. 45 About 70% think a lot in life. The majority (64%) also believes that every human being has a soul and a spirit, and that we continue to live beyond death (some of them admitting reincarnation). 46 Moscovici entitled these representations, shared by the majority or the society, as hegemonic representations. 47 Serge Moscovici, Notes Towards a Description of Social Representations. 48 Serge Moscovici, ‘The Phenomenon of Social Representations,’ in Social Representations, edited by Robert Farr and Serge Moscovici (Cambridge: Cambridge University Press, 1984), 3-70. 49 Abílio Oliveira, O Desafio da Morte; Abílio Oliveira, O Desafio da Vida (Lisboa: Coisas de Ler, 2011). 50 Abílio Oliveira, O Desafio da Morte. Abílio Oliveira, Passagem (Lisboa: Âncora Editora, 2007).

Bibliography Amâncio, Lígia. Masculino e Feminino: A Construção Social da Diferença. Porto: Afrontamento, 1994. Ariès, Philippe. História da morte no ocidente. Lisboa: Teorema, 1989. Bradbury, Mary. Representations of Death. London and New York: Routledge, 1999.

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__________________________________________________________________ Kastenbaum, Robert. Death, Society and Human Experience. Boston: Allyn & Bacon, 7th ed., 2001. Kastenbaum, Robert and Aisenberg. Psychology of Death. New York: Springer Publishing Company, 1976. Kübler-Ross, Elizabeth. On Death & Dying. New York: Simon & Schuster, 1969. Morin, Edgar. O Homem e a morte. Lisboa: Publicações Europa-América, 1988. Moscovici, Serge. La psychanalyse, son image et son public. Paris: PUF, 1961/1976. ———. ‘On Social Representations.’ In Social Cognition-Perspectives on Everyday Understanding, edited by Joseph Forgas, 181-210. London: Academic Press, 1981. ———. ‘The Phenomenon of Social Representations.’ In Social Representations, edited by Robert Farr and Serge Moscovici, 3-70. Cambridge: Cambridge University Press, 1984. ———. ‘Notes towards a Description of Social Representations.’ European Journal of Social Psychology 18 (1988): 211-250. Oliveira, Abílio. O Desafio da Morte. Lisboa: Âncora Editora, 2008. –––. O Desafio da Vida. Lisboa: Coisas de Ler, 2011. ———. Ilusões na Idade das Emoções – Representações sociais da morte, do suicídio e da música na adolescência. Lisboa: F. C. T. / Fundação Calouste Gulbenkian, 2008. –––, Passagem. Lisboa: Âncora Editora, 2007. Schneidman, Edwin. ‘You and Death.’ Psychology Today 5.1 (1971): 74-80. Thomas, Louis-Vincent. Mort et pouvoir. Paris: PBP, 1978. Abílio Oliveira is an Assistant Professor at Instituto Universitário de Lisboa (ISCTE-IUL), Lisboa, Portugal, and a Researcher, at Centro de Investigação em

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__________________________________________________________________ Sistemas e Tecnologias de Informação Avançados (ADETTI-IUL), Lisboa, Portugal. He is the author of several books, namely, O Desafio da Morte (The Challenge of Death), O Desafio da Vida (The Challenge of Life), Ilusões na Idade das Emoções (Illusions in the Age of Emotions) and Passagem (Passage). [email protected] Rute Rodrigues is a Social Psychologist currently working on suicide symbolisms and Rrpresentations as a Research Assistant at Centro de Investigação e Estudos de Sociologia (CIES-IUL), Lisboa, Portugal. [email protected]

Significance of Mental and Spiritual Support for Cancer Patients Suvi Saarelainen Abstract A diagnosis of cancer usually arouses fear of death. It seems that patients are often left alone with their anxieties. This statement is supported by research on cancer patients conducted in Finland in 2008, which stated that cancer patients were not given the support they needed unless they were active in seeking out that support themselves. This article introduces groups of cancer patients with attention given to how they think about spiritual and mental support as well as about death and dying. Almost 80% of Finns are members of the Evangelical Lutheran Church of Finland. However, according to the Patient Information Law, the personnel of hospitals in Finland are not allowed to inform congregation personnel about their patients’ need for mental or spiritual support. The article answers to two specific questions: 1.What kind of a mental and spiritual support do people suffering from cancer need?; and 2. How do they experience the possibility of dying? It is important to find answers to these questions in order to evaluate the efficiency of the current support system and to assess possible difficulties arising from the formal situation facing patients. I will also provide information about religiosity in Finland and discuss the conflicts between the Freedom of Religion Act and the Patient Information Law. This research utilizes a narrative method with data consisting of 13 letters and 7 interviews. By using narrative holistic-content analysis and holistic analysis of form it was possible to bring out cancer patients’ voices while identifying their individual need for support and their thoughts about religion and spirituality. Key Words: Mental support, spiritual support, cancer, patient, spirituality, narrative. ***** 1. Introduction Cancer diseases are considered to be relatively common among the Finnish population (5.4 million). Every fourth Finn has been affected by cancer in his or her lifetime and approximately 24,000 new cases of cancer are diagnosed each year in Finland. 1 This article concentrates on cancer patients’ experiences of mental and spiritual support during their illness. In Finland, there has been no earlier theological study of cancer patients’ mental and spiritual support. From an historical and international point of view, Finnish religiosity has been homogeneous. In the 1950’s, 95.1% of the population were members of Evangelical Lutheran Church of Finland. 2 Today the number has decreased down to78.1% 3. Furthermore, the state of Finland is trying to take a more neutral

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Significance of Mental and Spiritual Support for Cancer Patients

__________________________________________________________________ approach to church, which is visible also in legislation. According to the Finnish Patient Information Law, the personnel of hospitals are not allowed to inform the hospital pastors or congregation personnel about their patients’ need for mental or spiritual support. 4 Pargament brings out that there have been numerous attempts to define religiousness and spirituality. 5 He reviews various studies 6 and states that there is one agreement for these concepts – their multidimensionality. Traditionally, religious phenomena are seen from two perspectives: substantive and functional. 7 Religion nowadays can be seen as a rigid structure and spirituality is viewed positively as contributing to personal growth. 8 Post-modern religiosity has changed the meaning of institutional churches and communities and it seems that some kind of a feeble spirituality is gaining popularity. 9 Individual people have individual meanings when defining religion. 10 This article mainly uses the concept of spirituality simply because it entails the diversity of individual views of religion and one’s own conviction. 11 In the beginning, the concept of mental support was defined as psychosocial support without spiritual aspects. Spiritual support was defined as involving discussions about God and religion including possibly religious acts. It became clear at an early stage, however, that this division was not so simple. Participants had their own definitions and thoughts about the concepts. These understandings will be introduced in the Results. 2. Aims of the Study This article concentrates on two specific areas. The first focus is the support methods: what helped through difficulties and what would those participants who were left without support have needed. The second focus is the possibility of dying. The article discusses experiences and thoughts about the possibility of dying and how the participants managed to make sense of it. It is important to find answers to these questions in order to analyze the functioning of the current support system and to assess possible difficulties arising from the Patient Information Law. By using narrative methods of research, it was possible to reach individual experiences and life stories of people with cancer. The holistic views of Lieblich, Tuval and Zibler on narrative analysis 12 as well as Polkinghorne’s way of constructing a new story 13 worked as the main inspiration within this wide field of narrative research. To analyze interviews and letters I used a narrative holisticcontent analysis and holistic analysis of form. Data consists of 13 letters and 7 thematic interviews. Data was coded and numbered so that letter L stands for letters and letter I for interviews. They are also coded with a number, ex. L1 and I7. The interviewees’ age distribution was wide; the youngest participant was 21 years and the oldest 80 years old when the research was carried out. Only one participant was male.

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__________________________________________________________________ 3. Results Experiences and hopes for mental and spiritual support were the main factors that divided the examinees into four different categories. In this chapter, I will introduce these categories. The first group was named Supported. The group consisted of eight persons (L5, L6, L7, L9, L10, I1, I3, I6) who had positive experiences of spiritual and mental support. The extent of the support varied depending on the individual’s needs. They had different kinds of needs but they still had what they wished for. It is notable that some examinees had both negative and positive experiences. To get the support they needed they had to be active themselves and look for it. Nonetheless, people in this group felt that support helped them to cope with cancer. The lack of the spouses’ support was characteristic to this group. Two of them (L5, L10) reported that the mental and physical distance of their husbands was extremely hurtful. Something permanently broke in their marriages when spouses could not accept the changes in life brought by the cancer. These problems showed how important it is to have the support of the families and the loved ones. Being diagnosed with cancer was a great shock. The supported subjects did not describe being scared but focused rather on how they conquered their fear and anxiety. The Supported felt that their spiritual life strengthened during the illness. Praying was a significant part of the spirituality. Some of them prayed several times a day, some prayed when in pain. Generally, it can be stated that that they prayed when they were scared of dying. They also felt that intercessions gave comfort. During the time the research was carried out, the Supported still thought often about the disease, but at the same time they were very optimistic about the future life. Some of the participants had mixed emotions about the future. However, one of them had a very different state of cancer at the time (L7). She only had some weeks or months left when she sent her letter. In that letter she told that she gained great comfort from her conviction and hopes of eternal life. She also had plenty of fears and questions for God. She described her communication with God as an ‘exchange.’ She had conversations with her friend, who was religious, and the friend’s husband, who was a pastor. These talks offered consolation and answered difficult questions. She described that it was a challenging process when trying to accept her own mortality. The only thing that could bring a sense of security in this situation was God. God would take care of her family after her death and she herself could find peace in eternal life. The second group, the Yearners, consisted of four patients who needed support but did not get what they desired (I5, L1, L2, L8). They all had a strong feeling of being alone with the disease. A common feature for these four was that they needed someone to listen and to share their emotions, and they hoped that this spiritual support would have come from congregation. It is notable that none of these persons needed support right after the diagnosis. Even though one of them (I5) described that the diagnosis was extremely shocking,

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__________________________________________________________________ she also indicated that her need for support came at the stage when she got better, since she did not know how to go on with her life after the treatments. Two of the participants (L1, L8) told that the need for support developed when the treatments went on. It also seemed that these two went into deep shock and could not react. Both of them had problems understanding that they had cancer. After the state of numbness, the burst of sorrow emerged. The fourth member (L2) of this group had problems understanding the cancer as well. She told that she started processing emotional distress a year after the diagnosis with cancer. She had ostomy after the surgery and other physical changes after the radiation therapy. It was difficult to learn how to live with her changed appearance. She tried to adapt and took part in the adjustment camp. In that camp, she received plenty of information but had a disturbing experience with the pastor, who had said that people with ostomy are a burden for environment. He said repeatedly that no one has to stay in here (in this life) and it only takes ten minutes to end one’s life. After these comments, she felt really guilty and bad. She did not choose to suffer from cancer. She also experienced disappointment in small group meetings where a nurse just passed her situation over and told her to ‘get professional help’ for her depression. After all these events, it is understandable that it took a year to survive the changes in the body image, the guilt and the hurtful comments. When conducting the research, she was still was very sad about these experiences and felt alone. Every one of the Yearners had thoughts and wishes about the support and how it should have been given. This shows that it is extremely important to see every patient as an individual with their personal needs and hopes. By examining the Yearners’ forms of life, two interesting points were revealed. They all had a significant negative experience during their childhood or youth, and they all had doubts about their future. They had uncertain feelings and mixed emotions about getting better and coping with normal life. The third group was called the Individuals consisting of four examinees (L3, L4, L13, I7). For this group it was important to be able to cope with their disease without any specific help from outside. One of them told that she was fatalist (I7) thinking that cancer was a trial given by God and one just has to deal with it. This fatalism was so powerful that it helped her to manage through the disease. She strongly believed in angels and their guidance. Two of them (L3, L13) had opposite opinions about cancer. L13 felt it was very contradictory that God is good yet bad things happen in the world. She also told that before getting ill she believed in the Christian God but the experience of cancer made her faith impossible. Nonetheless, she hoped that she still could believe in heaven and life after death. L3 thought that the idea of God’s omnipotence was absurd. She had negative memories about religious gatherings from her childhood and adolescence. Narrowmindedness bothered her and she had resigned from the Finnish Lutheran Church after the passing of her mother. L4 had very strong views: she described herself as

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__________________________________________________________________ a pagan and an atheist. Yet she told that her own God is loving and nurturing. She saw the Christian God a punisher. All of these interviewees had created their own belief system which was traceable back to Lutheran traditions but also entailed clear signs of New Age spirituality. They expressed a willingness to resign from the Evangelical Lutheran Church of Finland and they had their own definition of God and conviction. They all considered the teachings of the Finnish Lutheran Church about God wrong. The diagnosis of cancer was described as a disappointment. Humor and the ability to cope independently were important factors. L4 end L13 told that humor helped them to cope with the illness giving them new perspective and strength. They also told that it was extremely important to pull through on their own. They did not want any outside help or conversational support. When discussing their future views, they appeared to be highly optimistic. But still, three of them (L3, L4, I7) thought that cancer would relapse. The fourth group examined was called the Believers. These four examinees (I2, I4, L11, L12) expressed that they did not need any extra support as they had their own faith and community by their side. They felt that their Lutheran convictions would hold them up during the illness. They felt that God took care of them and things would turn out fine. Each one of them had a different story to tell about religion as a coping method. Emphasis was put on spirituality and its meaning, and less on cancer. I2 had a strong spiritual community by her side. L11 told similar feelings about her Bible study group. She also told that her own spirituality was the main thing that helped her through the experience. I4 reported changes in her religious life after being diagnosed with cancer. Religion had always been part of her life and one day she felt that God was calling her. Cancer changed her spiritual life – it became deeper and more intimate. L12 shared her story of becoming a Christian during a prayer session. During illness she strongly felt God’s care, and the experience of cancer had changed her priorities in life. The crisis that the Believers experienced was described more significantly than in other groups. They lost their hair, went through an identity crisis, and had to give up many things. They posed many existential questions. This group also talked very openly and honestly about their own emotions and thoughts with their family and friends. Reactions to diagnosis differed from one another. Even though the first reactions were diverse, all of them had thoughts and fears of dying. Sincerity and openness played an important role in coping with their everyday life. Even though their spouses, children and friends stood constantly by their side, the fear of death was present. But as time went by, fear loosened its grip. It is notable that this group did not need any outside support. They had their own Lutheran convictions, and some had their own community by their side. Praying was the most powerful factor for the Believers.

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__________________________________________________________________ When the forms’ of their lives was compared, it was indicated that within this group the diagnosis had only a short-term negative impact on their lives; and future was viewed as positive. It is evident that it is not possible to provide a universal definition of mental and spiritual support. It is important to maintain a certain level of discretion and to recognize the patients’ needs or their possible unwillingness to discuss religious matters. Every patient comes with an individual background and distinctive thoughts. The only way to meet with their changing expectations is to listen carefully to what each one has to say and to try to find the ways to meet the level of required support. 4. Conclusion In the Finnish perspective, legislation raises questions and points to a conflict. The Patient Information Law states that the treatment should respect patients’ human rights, convictions and privacy and thus forbids contacting outside support personnel. 14 The Freedom of Religion Act asserts that every individual has a right to decide one’s own status as a member of religious community. 15 It was surprising to note that in real life the change in hospitals has not been so dramatic so far and in many hospital pastors are working like before. 16 The results indicated that there is a gap between pastoral workers and patients. According to a research conducted in the Netherlands, existential crises may occur as a result of approaching death. 17 Similar justification for pastoral visitations has been searched in Switzerland. When hospital patients were questioned at a general level, they reported lack of support and spiritual struggles, and they felt that their faith was on trial. 18 It seems that somehow the pastors need to ensure their own presence as a necessity so that they can help the people in need. Nonetheless, it has been researched that the health care providers have an important role to cancer patients as emotional supporters. 19 In my research, some of the participants mentioned having a ‘great doctor’ or a ‘kind nurse,’ yet they had a deeper need for support than what the hospital personnel could offer. Already in 1988, Watson et al. created a Mental Adjustment to Cancer to describe cancer patients’ feelings about their disease. 20 There have been studies which indicated the importance of social support and support methods. 21 Furthermore, it has been stated that lack of life control and different developmental age stages are a challenge for psychosocial advancement. 22 People suffering from cancer feel stigmatized due to the illness. This has impacts on several areas of life. 23 When the cancer survivors’ social relationships and social support were examined, it was suggested that the extent of the illness and the cancer side effects affected social relationships and the need of social support. 24 There is also a suggestion that the ability to find meaning and peace in life contributes to favorable adjustment during cancer survivorship. However, it seems that faith is uniquely related to cancer-related growth. 25

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__________________________________________________________________ Fitchett and Risk (2009) reported that a growing number of studies indicate harmful effects of religious or spiritual struggle among hospital patients. They suggested that 7% of the patients can be identified with these struggles. 26 The variety of the hospital patients’ situation must be regarded when interpreting these results, since this percentage seems extremely low when examining cancer patients. If the target group of Fitchett and Risk study would have cancer patients, the percentage would have increased remarkably. Although there is research information and collected data about the cancer patients’ need of support there has not been any real actions to make improvements. Pastoral workers have extensive knowledge and the needed skills to help people in need. It would be important to examine why this knowledge and help does not reach those who most need it.

Notes 1

Information about Cancer, http://www.cancer.fi/tietoasyovasta/, Accessed September 22, 2011. 2 Harri Heino, Mihin Suomi tänään uskoo (n.p., 2002), 23-24. 3 Official Homepage of Evangelical Lutheran Church of Finland, http://evl.fi/ EVLUutiset.nsf/Documents/E2584652A435801BC225711C0038CB73?OpenDocu ment&lang=FI, accessed September 22, 2011. 4 Patient Information Law: 4. chapter, §13 Confidentiality of information in medical report. Healthcare personnel only are allowed to see patient documents. If patient gives written permission documents can be shared with justified person. 5 Raymond F. Paloutzian and Crystal L. Park, ‘Integrative Themes on the Current Science of the Psychology of Religion,’ in Handbook of the Psychology of Religion and Spirituality, edited by Raymond F. Paloutzian and Crystal L. Park (The Guilford Press: New York, 2005), 15. 6 For example: Peter C. Hill et al., ‘Conceptualizing Religion and Spirituality: Points of Commonality, Points of Departure,’ Journal for Theory of Social Behavior 30 (2000): 51-77; David. O. Moberg, ‘Assessing and Measuring Spirituality: Confronting Dilemmas of Universal and Particular Evaluative Criteria,’ Journal of Adult Development 9 (2002): 47-60; Kenneth I. Pargament, ‘The Psychology of Religion and Spirituality? Yes and No,’ Journal of Psychology of Religion 9 (1999): 3-16; Brian J. Zinnebauer, et al., ‘Religion and Spirituality: Unfuzzing the Fuzzy,’ Journal for the Scientific Study of Religion 36 (1997): 549564; Brian J. Zinnebauer, Kenneth I. Pargament and Allie B. Scott, ‘The Emerging Meanings of Religiousness and Spirituality,’ Journal of Personality 67 (1999): 889-919. 7 Brian J. Zinnbauer and Kenneth I. Pargament, ‘Religiousness and Spirituality,’ in Handbook of the Psychology of Religion and Spirituality, edited by Raymond F.

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__________________________________________________________________ Paloutzian and Crystal L. Park (New York: The Guilford Press, 2005), 22; Anthony Geels and Owe Wikström, Uskonnollinen ihminen (Helsinki: KotimaaYhtiöt Oy / Kirjapaja, 2009), 20. 8 Paloutzian and Park, ‘Integrative Themes on the Current Science of the Psychology of Religion,’ 15-16. 9 Anthony Geels and Owe Wikström, Uskonnollinen ihminen (Helsinki: KotimaaYhtiöt Oy / Kirjapaja, 2009), 18. 10 Kenneth I. Pargament, The Psychology of Religion and Coping (New York: The Guilford Press, 1997), 23. 11 See more: Brian J. Zinnbauer and Kenneth I. Pargament ‘Religiousness and Spirituality,’ in Paloutzian and Park, eds, 24. 12 Amia Lieblich, Rivka Tuval-Mashiach and Tamar Zibler, eds, Narrative Research: Reading, Analysis and Interpretation (Thousand Oaks, London, New Delhi: SAGE Publications, 1998). 13 Donald Polkinghorne, ‘Narrative Configuration in Qualitative Analysis,’ in Life History and Narrative, edited by J. Amos Hatch & Richard Wiesniewski (London: Falmer, 1995), 5-23. 14 Patient Information Law: 2. chapter, §3: Right to have proper healthcare and nursing and related treatment. 15 Freedom of Religion Act: 1. chapter, § 3: Every individual has a right to decide one’s own status as a member of religious community by joining one or resigning one. 16 Maria Lappalainen, Potilaslain vaikutus sairaalasielunhoitoon: sairaalapapin roolin ja aseman muutos, 1993-2010 (Helsinki: Helsingin yliopisto, 2011). 17 William Yang, Ton Staps and Ellen Hijmans, ‘Crisis and Awareness of Dying: The Role of Meaning and Spirituality,’ OMEGA: Journal of Death and Dying 61 (2010): 53-69. 18 Urs Winter-Pfändler and Christoph Morgenthaler, ‘Who Needs Chaplaincy Visitation in General Hospitals? Evaluation of Influencing Factors to Assess Patients with Psychosocial and Religious Needs,’ The Journal of Pastoral Care & Counseling 65 (2011): 1-10. 19 Christine Dunkel-Schetter, ‘Social Support and Cancer: Findings Based on Patient Interviews and Their Implications,’ Journal of Social Issues 40 (1984): 7798. 20 Maggie Watson et al., ‘Development of a Questionnaire Measure of Adjustment to Cancer: The MAC Scale,’ Psychological Medicine 18 (1988): 203-209. 21 For example: Christine Dunkel-Schetter. ‘Social Support and Cancer: Findings Based on Patient Interviews and Their Implications,’ Journal of Social Issues 40 (1984): 77-98; Shelley E. Taylor, Roberta L. Falke, Steven J. Shoptaw and Rosemary R. Lichtman, ‘Social Support, Support Groups, and the Cancer Patient,’

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__________________________________________________________________ Journal of Consulting and Clinical Psychology 54 (1986): 608-615; Maria Kangas, Jane L. Henry and Richard A. Bryant, ‘The Course of Psychological Disorders in the 1st Year After Cancer Diagnosis,’ Journal of Consulting and Clinical Psychology 73 (2005): 763-768; Siroj Sorajjakool and Bryn L. Seyle, ‘Theological Strategies, Constructing Meaning, and Coping with Breast Cancer: A Qualitative Study,’ Pastoral Psychology 54 (2005): 173-187; Brad Zebrack, et al., ‘Assessing the Health Care Needs of Adolescent and Young Adult Cancer Patients and Survivors,’ Cancer 107 (2006): 2915-2923; Brad Zebrack, ‘Psychological, Social, and Behavioral Issues for Young Adults with Cancer,’ Cancer 117 (2011): 22892294. 22 Brad Zebrack and Kathrine Walsh-Burke, ‘Advocacy Needs of Adolescent and Young Adult Cancer Survivors: Perspectives of Pediatric Oncology Social Workers,’ Journal on Psychosocial Oncology 22 (2004): 77. 23 Barbara Hoffman ‘Employment Discrimination: Another Hurdle for Cancer Survivors.’ In Cancer Investigations 9 (1991): 589-595. 24 Kathleen Ell, Robert Nishimoto, Linda Mediansky, Joanne Mantell and Maurice Hamovitch, ‘Social Relations, Social Support and Survival among Patients with Cancer,’ Journal of Psychosomatic Research 36 (1992): 531-541. 25 Thomas O. Blank, Lorna Kwan, Patricia A. Ganz, Anette L. Stanton, Crystal L. Park, Bettina Yanez and Donald Edmonson, ‘Facets of Spirituality as Predictors of Adjustment to Cancer: Relative Contributions of Having Faith and Finding Meaning,’ Journal of Consulting and Clinical Psychology 77 (2009): 730-741. 26 George Fitchett and James L. Risk, ‘Screening for Spiritual Struggle,’ The Journal of Pastoral Care & Counselling 63 (2009): 1-12.

Bibliography Blank, Thomas O., Lorna Kwan, Patricia A. Ganz, Anette L. Stanton, Crystal L. Park, Bettina Yanez and Donald Edmonson. ‘Facets of Spirituality as Predictors of Adjustment to Cancer: Relative Contributions of Having Faith and Finding Meaning.’ Journal of Consulting and Clinical Psychology 77 (2009): 730-741. Constitutional Law, 1999. http://www.finlex.fi/fi/laki/ajantasa/1999/19990731. Viewed September 22, 20011. Dunkel-Schetter, Christine. ‘Social Support and Cancer: Findings Based on Patient Interviews and Their Implications.’ Journal of Social Issues 40.4 (Winter 1984): 77-98.

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__________________________________________________________________ Ell, Kathleen, Robert Nishimoto, Linda Mediansky, Joanne Mantell and Maurice Hamovitch. ‘Social Relations, Social Support and Survival among Patients with Cancer.’ Journal of Psychosomatic Research 36 (1992): 531-541. Fitchett G. and J. L. Risk. ‘Screening for Spiritual Struggle.’ The Journal of Pastoral Care & Counseling 63.1-2 (Spring-Summer 2009): 1-12. Freedom of Religion Act, 2003. http://www.finlex.fi/fi/laki/ajantasa/2003/ 20030453. Viewed September 22, 2011. Geels, Anthony and Wikström Owe. Uskonnollinen ihminen. (Org. Den religiösa människa. En introduction till religionpsykologin). Helsinki: Kotimaa-Yhtiöt Oy / Kirjapaja, 2009. Heino, Harri. Mihin Suomi tänään uskoo. Juva: WSOY, 2002. Hill, P. C., Kenneth J. Pargament, Ralph W. Hood, Jr., Michael E. McCullough, James P. Sawyers, David B. Larson and Brian J. Zimbauer. ‘Conceptualizing Religion and Spirituality: Points of Commonality, Points of Departure.’ Journal for the Theory of Social Behavior 30.1 (March 2000): 51-77. Hoffman, B. ‘Employment Discrimination: Another Hurdle for Cancer Survivors.’ Cancer Investigations 9.5 (1991): 589-595. Information on Cancer. http://www.cancer.fi/tietoasyovasta/. Viewed September 22, 2011. Kangas, Maria, Jane L. Henry and Richard A. Bryant. ‘The Course of Psychological Disorders in the 1st Year after Cancer Diagnosis.’ Journal of Consulting and Clinical Psychology 73 (2005): 763-768. Lankinen, Juha. Syöpäpotilaan pastoraaliset odotukset. Helsinki: STKSJ 228, 2001. Diss. Lappalainen, Maria. Potilaslain vaikutus sielunhoitoon: sairaalapapin roolin ja aseman muutos 1993–2010. Helsinki: Helsingin yliopisto, 2011. Lichtman, Rosemary R. ‘Social Support, Support Groups, and the Cancer Patient.’ Journal of Consulting and Clinical Psychology 54 (1986): 608-615.

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__________________________________________________________________ Lieblich, Amia, Rivka Tuval-Mashiach and Tamar Zibler. Narrative Research: Reading, Analysis and Interpretation, edited by Amia Lieblich, Rivka TuvalMashiach and Tamar Zibler. Thousand Oaks, London, New Delhi: SAGE Publications, 1998. Moberg, D. O. ‘Assessing and Measuring Spirituality: Confronting Dilemmas of Universal and Particular Evaluative Criteria.’ Journal of Adult Development 9.1 (2002): 47-60. Official Homepage of Evangelical Lutheran Church of Finland, http://evl.fi/ EVLUutiset.nsf/Documents/E2584652A435801BC225711C0038CB73?OpenDocu ment&lang=FI. Viewed September 22, 2011. Paloutzian, Raymond F. and Crystal L. Park. ‘Integrative Themes on the Current Science of the Psychology of Religion.’ In Handbook of the Psychology of Religion and Spirituality, edited by Raymond F. Paloutzian and Crystal L. Park, 320. New York: The Guilford Press, 2005. Pargament, Kenneth I. The Psychology of Religion and Coping. New York: The Guilford Press, 1997. ———. ‘The Psychology of Religion and Spirituality? Yes and No.’ Journal of Psychology of Religion 9 (1999): 3-16. Patient Information Law, 2007. http://www.finlex.fi/fi /laki /ajantasa/2007/ 20070159. Viewed September 22, 2011. Polkinghorne, Donald. ‘Narrative Configuration in Qualitative Analysis.’ In Life History and Narrative, edited by J. Amos Hatch & Richard Wiesniewski, 5-23. London: Falmer, 1995. Sorajjakool, Siroj and Bryn L. Seyle. ‘Theological Strategies, Constructing Meaning, and Coping with Breast Cancer: A Qualitative Study.’ Pastoral Psychology 54 (2005): 173-187. Syrjäläinen, Eija et al. Avauksia laadullisen tutkimuksen analyysiin. Tampere: Tampere University Press, 2007.

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__________________________________________________________________ Taylor, Shelley E., Roberta L. Falke, Steven J. Shoptaw and Rosemary R. Lichtman. ‘Social Support, Support Groups, and the Cancer Patient.’ Journal of Consulting and Clinical Psychology 54 (1986): 608-615. Winter-Pfändler, Urs and Christoph Morgenthaler, ‘Who Needs Chaplaincy Visitation in General Hospitals? Evaluation of Influencing Factors to Assess Patients with Psychosocial and Religious Needs.’ The Journal of Pastoral Care & Counseling 65 (2011): 1-10. Yang, William, Ton Staps and Ellen Hijmans. ‘Existential Crisis and Awareness of Dying: The Role of Meaning and Spirituality.’ OMEGA: Journal of Death and Dying 61.1 (2010): 53-69. Zebrack, Brad. ‘Psychological, Social, and Behavioral Issues for Young Adults with Cancer.’ Cancer, 117 (2011): 2289-2294. Zebrack, Brad, Archie Bleyer, Karen Albritton, Sandra Medearis and Julia Tang. ‘Assessing the Health Care Needs of Adolescent and Young Adult Cancer Patients and Survivors.’ Cancer 107 (2006): 2915-2923. Zebrack, Brad and Katherine Walsh-Burke. ‘Advocacy Needs of Adolescent and Young Adult Cancer Survivors: Perspectives of Pediatric Oncology Social Workers.’ Journal on Psychosocial Oncology 22 (2004): 75-87. Zinnbauer, Brian J. and Kenneth I. Pargament. ‘Religiousness and Spirituality.’ In Handbook of the Psychology of Religion and Spirituality, edited by Raymond F. Paloutzian and Crystal L. Park, 21-42. New York: The Guilford Press, 2005. Zinnebauer, Brian J., Kenneth I. Pargament and Allie. B. Scott. ‘The Emerging Meanings of Religiousness and Spirituality.’ Journal of Personality 67 (1999): 889-919. Suvi Saarelainen is Master of Theology and Graduate Student of Pastoral Theology at the Helsinki University. She is also a pastor of Evangelical Lutheran Church of Finland. While interested in cancer studies and narrative approach of analysis, currently her research and writing is devoted to young adults as cancer patients.

PART 2 Culture and Dying

Lessons About Dying and Death from Disasters John F. Freie Abstract The scholarship on death and dying is concerned primarily with issues and problems related to the experiences of individuals. How individuals experience the death process and how medical professionals and family can best be involved have become subjects of examination and policy recommendations. This chapter takes a different tact – it focuses on instances of numerous, collective, and simultaneous deaths resulting from disasters. The chapter focuses on three disasters: Hurricane Katrina, the Japanese tsunami, and the 1906 San Francisco earthquake. In examining these tragedies what stands out is the divide between how elites interpret and respond to disasters as opposed to how the masses respond. Elites view disasters as challenges to order, viewing the masses as irrational, panic-prone, and likely to loot and even murder. Based on these assumptions they attempt to assert control, often in a brutal and arbitrary fashion. However, this view runs contrary to the actual behaviour of the masses. In fact, during and immediately after disasters ordinary people tend to react calmly, cooperate with each other, and assist others (often strangers) in need. While the media sometimes note instances of cooperative mass behaviour, they attribute it to unique cultural factors or aberrations. These findings are significant for scholars of dying and death for several reasons. First, the cultural interpretation that the danger of disasters is to be found in mass panic–and therefore elite control is necessary – can be extended to individual dying experiences where elites are more concerned with control than developing policies sensitive to humane dying experiences. Second, the concept of mutual aid, which often informs mass behaviour, can act as a model for dying experiences. Finally, the study suggests the utility of expanding the study of dying and death from the micro to the macro level. Key Words: Disasters, elite panic, mutual aid, community disruption, San Francisco earthquake, Hurricane Katrina, Japanese tsunami. ***** One of the leading texts on death and dying runs almost 600 pages, yet only 5 pages are devoted to a discussion of disasters. 1 The scholarship on death and dying is primarily concerned with issues and problems related to the experiences of individuals. Topics commonly include the treatment of individuals in hospitals, nursing homes, and emergency rooms, the appropriate role of health care providers in the death and dying process, and the empowerment of individuals who are experiencing the dying process. Consequently, the fields of psychology and social psychology are frequently relied upon to analyze behaviour. Even where research

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__________________________________________________________________ has examined the policy-making process and sociological dimensions of the death and dying processes there has been a tendency to focus on how those systems affect individuals. This chapter will provide a different perspective. Instead of focusing on the issues related to individual deaths this chapter examines the experiences associated with instances of simultaneous, multiple, collective deaths resulting from disasters. While it would be inaccurate to claim that in such crisis situations people – stripped of social niceties – are governed only by their fundamental human natures, disasters do allow people to reveal what they believe is most important to them. To some extent those responses vary from person to person. Yet, we cannot ignore the fact that disaster behaviour occurs within a social and political context. In studying disasters I hope to examine those aspects of the search, recovery, and rebuilding processes that can provide insights into the death and dying process. This research will focus on disasters that have been triggered by natural rather than unnatural (human-made) causes, although in some instances the two become intertwined. The social dynamics surrounding natural disasters are more similar to the individual dying process – even when individual deaths have occurred as a result of a human-caused accident – than unnatural disasters. At the same time unnatural disasters often produce in survivors profound and lasting feelings of a loss of self-esteem and faith in institutions, heightened senses of dread and vulnerability and destruction of communities. 2 Such reactions are far more rare in instances of individual deaths. This leaves us with hundreds of documented and well-researched disasters. Yet, the patterns of behaviour during and in the aftermath of disasters are strikingly similar. Although the points that will be made are reflective of behaviours that occur in most disasters, I will illustrate these patterns by commenting on three well-known disasters: the 1906 San Francisco earthquake, Hurricane Katrina that devastated New Orleans in 2005, and the 2011 earthquake and subsequent tsunami in Japan. 1. Behaviours Disasters, because of their dramatic nature, are inherently interesting. Even those that have occurred in the distant past remain the subject of research in the academic community and fascination in the popular media. In fact, many of the beliefs we have about how people behave during disasters come from popular fictionalized accounts of earthquakes, tsunamis, volcanic eruptions, nuclear power meltdowns, and even meteor impacts. The narratives of such presentations are strikingly similar: the hero (commonly a scientific maverick) identifies the early signs of the impending disaster; authorities are warned of the impending doom but ignore or downplay the threat; when the disaster strikes people panic, trampling each other and losing all sense of concern for the fellow human beings and sometimes acting selfishly until the authorities – who finally acknowledge that the

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__________________________________________________________________ hero was correct – belatedly respond to make the best of a bad situation and save the day. Not surprisingly those who systematically study disasters find very different patterns of behaviour. In this chapter I identify several of those behaviours that have the most significance for scholars and professionals in the area of dying and death. 2. Elite Panic Although the commonly accepted image of panic is often associated with masses of individuals running pell-mell through the streets, a more refined definition views panic as an insufficient time to make an informed decision that leads to a breakdown in the social order and a breaking of social bonds that leads to greater danger. 3 Although the popular image of mass behaviour is one of panic, the accumulating research about human behaviour during disasters is quite different. What emerges in disaster studies is the finding that if panic occurs it tends to be elite rather than mass panic. Ironically, elites often fear mass panic and as a result frequently panic themselves. One of the earliest and most extensively documented instances of elite panic occurred in the immediate aftermath of the 1906 earthquake that destroyed San Francisco. The earthquake destroyed over 28,000 buildings and killed about 3,000 residents. Fearing looting Mayor Eugene Schmitz authorized the police and federal troops to ‘shoot-to-kill’ anyone found engaged in looting. There were numerous instances of troops under the direction of Brigadier General Frederick Funston who mistook the behaviour of citizens trying to recoup their property, or digging through crumbled buildings to rescue someone trapped in the rubble as looting, and shot them dead. In other instances there were reports of soldiers shooting people merely for disobeying even the slightest order. Accounts vary, but the director of the San Francisco earthquake virtual museum estimates that at least 500 people were shot and killed by the military. 4 Many of the buildings that were destroyed were actually destroyed not by the earthquake itself, nor by the fires that the earthquake triggered, but by the military using inappropriate explosives to create firewalls to prevent the spread the fires. Rather than using dynamite they often used black powder which had the effect of contributing to the spread of the fires rather than creating firewalls. Almost 100 years later New Orleans experienced its own version of elite panic in the aftermath of Hurricane Katrina. Although no official ‘shoot-to-kill’ order was issued, Governor Kathleen Blanco’s public statements were tantamount to such a declaration. In response to unsubstantiated media reports of looting, mass raping, rooftop snipers, mass murder, and a general orgy of brutality Governor Blanco responded to a question from a CNN News reporter in the following way: ‘When hoodlums victimize and inflict suffering on people at their wits’ end, they’re taking away our limited resources, whatever resources we have to save

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__________________________________________________________________ babies, to save children and to save good people. I have one message for these hoodlums. These troops know how to shoot and kill, and they are more than willing to do so, if necessary. And I expect they will.’ 5 Yet even more disturbing was the behaviour of the FEMA-directed federal response of the use of troops. Partly in reaction to similar media reports that Blanco heard and partly in response to a Homeland Security internal report (FEMA had recently been transferred to Homeland Security) that theorized that terrorists could take advantage of disasters such as hurricanes to slip, undetected, into the country, FEMA created ‘Camp Greyhound,’ an outdoor jail constructed at the New Orleans bus terminal. Made of wire fencing resembling dog kennel runs and concrete floors, hundreds of residents who had refused to, or could not, evacuate were arrested, handcuffed, never informed of why they were being arrested or informed of their rights, strip searched, made to wear orange prison jumpsuits, physically and mentally harassed, and imprisoned–first in Camp Greyhound and later at a maximum security prison 70 miles away. Denied access to the outside world and even access to attorneys, some spent as much as eight months in solitary confinement. Hearings were considered ‘private’ with the public barred and the media was never informed of what was happening. Eventually, all charges against them were dropped. 6 3. Elite Control While there is an element of truth in the idea that natural disasters strip away social status differences because all suffer at the hands of Mother Nature, nonetheless, it usually does not take long until elites reassert their control and reestablish social hierarchies. While it is necessary for leaders to emerge to direct the search and recovery phases in response to the disaster, too often the response of elites is to exploit the opportunity and pursue their own self-interests rather than the interests of the broader community. After the earthquake in San Francisco and after the brutal response of the military and police forces Mayor Schmitz appointed a group of prominent citizens, the Committee of Fifty, to coordinate the rebuilding of the city. One of the first actions was to attempt to remove the Chinese from their homes and open the area in which they lived for real estate speculation. But the Committee was also a source of mismanagement and embezzlement of relief donations and some of its members were accused of illegal speculation of relief supplies. Their actions so angered people that an anonymous group sarcastically calling itself the ‘Committee of the Whole, People of San Francisco’ circulated a flyer stating: ‘We, the refugees and citizens of San Francisco, denounce these men as traitors to their trust.’ 7 In other instances elites often try to control disaster situations by controlling information, often operating on the basis of the belief that if people knew the actual extent of the disaster they would panic. This control usually takes one of two forms. First, based on the previously discussed panic myth, information about the

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__________________________________________________________________ extent to which the military and police have been mobilized is emphasized and widely disseminated. Second and also based on the panic myth, elites skew and withhold information about the true nature of the disaster. In the Japanese earthquake/tsunami and subsequent nuclear power meltdown the government and Tokyo Electric Power executives consistently gave confusing accounts that downplayed the severity of the crisis. 8 Issues of political and economic power cannot be ignored in times of disaster. While there are some examples of altruistic elite behaviour and close cooperation between elites and masses (e.g., the 1917 Halifax explosion) the more common pattern of elite behaviour is that which occurred in San Francisco, New Orleans, and Japan. In the aftermath of natural disasters elites use their power to maintain, re-establish and even expand the boundaries that protect their social and political power. This is accomplished by linking their actions to the accepted myth of mass panic that is prevalent in popular culture. 9 4. Mutual Aid The common image of mass behaviour is often illustrated in popular movies. In the midst of the disaster at least one person behaves in a shockingly self-interested manner attempting to save himself at the expense of others. This person then dies (sometimes in a freak accident) because of his own moral failure. Not surprisingly the myth of self-interested behaviour runs counter to the way individuals actually behave during and immediately following disasters. While disaster research raises concerns about the behaviour of elites, it reveals, on the other hand, an amazing degree of cooperation among the citizenry. Not only do citizens not panic but ‘rather than helplessly awaiting outside aid, members of the public behave proactively and pro-socially to assist one another; that community residents themselves perform many critical disaster tasks, such as searching for and rescuing victims; and that both social cohesiveness and informal mechanisms of social control increase during disasters, resulting in a lower incidence of deviant behaviour than during non-disaster times.’ 10 Instead of panic, the behaviour of the masses can best be described as a relationship of mutual aid. Mutual aid is a recognition of regard, respect, understanding, and appreciation of other people. It is not so much altruistic as it is a recognition of the interconnectedness of people and how helping other people gives one’s own life meaning by helping work toward a common good. 11 Mutual aid – which characterizes the behaviour of individuals during disasters – is horizontal rather than vertical. In other words, it provides direct linkages among citizens on the basis of needs and it is not based on expertise, authority, or social status. 12 Virtually all disaster situations elicit cooperative behaviour. Japanese novelist Banana Yoshimoto (who often writes about bereavement) said this in response to what she saw at the time of the 2011 tsunami: ‘They have been so respectable – unlike the sensationalism of the media and the ambiguous responses of the

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__________________________________________________________________ government. Evidence of strong unity, kindness and strength of the Japanese people on that catastrophic day was among the many moments that impressed me.’ 13 In the San Francisco earthquake thousands of refugees were fed in makeshift soup kitchens created by average citizens while others stitched together blankets, carpets, and sheets to make tents to shelter the homeless. Mutual aid behaviour during disasters performs several important functions. Most obviously, the needs of the displaced are addressed in a caring, albeit not wholly satisfying fashion. One early study found that in the immediate aftermath of disasters almost a third of the survivors engaged in searches for the missing, 22 percent took an active role in rescuing people and almost a half performed emergency relief functions. 14 In addition, mutual aid behaviour often functions to alleviate psychological trauma. When people caught up in disaster are confronted with the immediate reality of death purposive activity directed at helping others can function to ameliorate negative psychological consequences. ‘Studies have found that the effects of trauma depend greatly on whether those wounded can seek comfort, reassurance, and safety with others. Strong connections, with trust that others will be there for them when needed, counteract feelings of insecurity, helplessness, and meaninglessness.’ 15 5. Community Disruption Disasters have devastating consequences for communities. Substantial portions of the population are killed, thousands of homes are destroyed, businesses are closed and people lose their jobs. In hurricane Katrina, for example, nearly 1,500 people died, approximately 275,000 homes were damaged or destroyed, and 400,000 jobs were lost. Thousands of residents were re-located and never returned. 16 Although exact figures may never be known upwards of 20,000 people were killed in the Japanese tsunami and some villages and towns were totally obliterated. Immediate responders focus on rescue and then collection and disposal of bodies. Because the normal systems used to process the dead and provide bereavement services are overwhelmed survivors must cope with not only the loss of their loved ones but with make-shift procedures that are often insensitive to their concerns. There is often no time for individual funerals and people are asked to provide private information in order to identify the dead. Body handling becomes an ad hoc process and families often feel powerless. This kind of devastation has serious consequences for the ability of people to recover not only physically but psychologically as well. The benefits of having the security of having a home–a neighbourhood and a community–are critically important for the recovery of people from trauma associated with disasters. 17 Resilience to the devastation that accompanies disasters can best be addressed by building community and enhancing social connectedness – by actively engaging

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__________________________________________________________________ people to tell their stories, by re-establishing the routines of life, and by developing a positive communal vision of the future. 6. Conclusion Although disasters involve the deaths of large numbers of people the suddenness and unexpectedness of deaths eliminates the early psychological and physical stages of the dying process that individuals usually experience. Nonetheless, behavioural patterns that occur during disasters and in their aftermath highlight several aspects of the death and dying process. 1. The fact that panic occurs among elites who fear mass panic suggests the importance of the role of average citizens in playing significant roles in the dying process. In many respects non-professionals are those in the best position to understand the immediate needs of the dying and of others directly affected by the disaster. 2. In times of crisis people have a desire, and even a need, to assist others. This type of assistance – mutual aid – applies to victims as well as those attempting to provide aid to victims. It is important to recognize that the dying process is a twoway street. 3. Disasters disrupt and in many instances totally destroy the social, economic, and political systems. People lose the resources to replenish their communities. This often leads to psychological problems for survivors. While the death of a loved one disrupts relationships it seldom destroys the resources needed to rebuild a sense of connectedness as disasters often do. Our brief examination of disasters emphasizes the importance of relationships (in the case of disasters entire communities) in coping with loss.

Notes 1

Lynne Ann DeSpelder and Albert Lee Strickland, The Last Dance: Encountering Death and Dying, 9th edition (New York: McGraw Hill, 2011). 2 Kai Erikson, A New Species of Trouble: Explorations in Disaster, Trauma, and Community (New York: W. W. Norton & Co., 1994). 3 Lee Clarke and Caron Chess, ‘Elites and Panic: More to Fear than Fear Itself,’ Social Forces 87 (2008): 993-1014.

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__________________________________________________________________ 4

Gladys Hansen and Emmet Condon, Denial of Disaster: The Untold Story and Photographs of the San Francisco Earthquake of 1906 (San Francisco: Cameron & Company, 1989). 5 CNN, ‘Law and Order Breaks Down in New Orleans,’ Transcript September 2, 2005. 6 Dave Eggers, Zeitoun (New York: Vintage Books, 2009). 7 ‘The San Francisco Earthquake and Fire,’ The Regents of the University of California, Viewed 15 September 2011, http://bancroft.berkeley.edu/ collections/ earthquakeandfire/exhibit/room04_item05.html. 8 Hiroko Tabuchi and Matthew L. Wald, ‘Japanese Scramble to Avert Meltdowns as Nuclear Crisis Deepens After Quake,’ New York Times, March 12, 2011, Viewed 15 September 2011, http://www.nytimes.com/2011/03/13/world/asia/13 nuclear.html?pagewanted=1&_r=1&sq=japanfloodsnuclearreactorwald&st=cse& scp=1. 9 Kathleen Tierney, Christine Bevc and Erica Kuligowski, ‘Metaphors Matter: Disaster Myths, Media Frames, and Their Consequences in Hurricane Katrina,’ Annals of the American Academy of Political and Social Science 604 (2006): 5781. 10 Ibid. 11 Peter Kropotkin, Mutual Aid: A Factor of Evolution (London: William Heinemann, 1908). 12 Dominique Moyse Steinberg, ‘The Magic of Mutual Aid,’ Social Work with Groups 25 (2002): 31-38. 13 Guy Haydon, ‘Japanese Writer Draws Faith from Tragedy,’ South China Morning Post, May 29, 2011, Viewed 14 September 2011, http://0-www.lexis nexis.com.library.lemoyne.edu/hottopics/Inacademic/. 14 Charles E. Fritz and Harry B. Williams, ‘The Human Being in Disasters: A Research Perspective,’ Annals of the American Academy of Political and Social Science 309 (1957): 42-51. 15 Froma Walsh, ‘Traumatic Loss and Major Disasters: Strengthening Family and Community Resilience,’ Family Process 46 (2007): 208. 16 Robert L. Hawkins and Katherine Maurer, ‘You Fix My Community, You Have Fixed My Life: The Disruption and Rebuilding of Ontological Security in New Orleans,’ Disasters 35 (2011), 143-159. 17 Froma Walsh, ‘Traumatic Loss and Major Disasters: Strengthening Family and Community Resilience,’ Family Process, 46 (2007), 208. See also, Robert L. Hawkins and Katherine Maurer, ‘You Fix My Community, You Have Fixed My Life: The Disruption and Rebuilding of Ontological Security in New Orleans,’ Disasters 35 (2011): 143-159.

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Bibliography Clarke, Lee and Caron Chess. ‘Elites and Panic: More to Fear than Fear Itself.’ Social Forces 87 (2008): 993-1014. CNN. ‘Law and Order Breaks Down in New Orleans.’ Transcript 2 September 2005. DeSpelder, Lynne Ann and Albert Lee Strickland. The Last Dance: Encountering Death and Dying, 9th edition. New York: McGraw Hill, 2011. Eggers, Dave. Zeitoun. New York: Vintage Books, 2009. Erikson, Kai. A New Species of Trouble: Explorations in Disaster, Trauma, and Community. New York: W. W. Norton & Co., 1994. Fritz, Charles E. and Harry B. Williams. ‘The Human Being in Disasters: A Research Perspective.’ Annals of the American Academy of Political and Social Science 309 (1957): 42-51. Hansen, Gladys and Emmet Condon. Denial of Disaster: The Untold Story and Photographs of the San Francisco Earthquake of 1906. San Francisco: Cameron & Company, 1989. Hawkins, Robert L. and Katherine Maurer. ‘You Fix My Community, You Have Fixed My Life: The Disruption and Rebuilding of Ontological Security in New Orleans.’ Disasters 35 (2011): 143-159. Haydon, Guy. ‘Japanese Writer Draws Faith from Tragedy.’ South China Morning Post, 29 May 2011. Viewed 14 September 2011. http://0-www.lexisnexis.com. library.lemoyne.edu/hottopics/Inacademic/. Kropotkin, Peter. Mutual Aid: A Factor of Evolution. London: William Heinemann, 1908. ‘The San Francisco Earthquake and Fire.’ The Regents of the University of California. Accessed September 15, 2011. http://bancroft.berkeley.edu/ collections/ earthquakeandfire/exhibit/room04_item05.html.

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__________________________________________________________________ Steinberg, Dominique Moyse. ‘The Magic of Mutual Aid.’ Social Work with Groups 25 (2002): 31-38. Tabuchi, Hiroko and Matthew L. Wald. ‘Japanese Scramble to Avert Meltdowns as Nuclear Crisis Deepens after Quake.’ New York Times, 12 March 2011. Viewed 15 September 2011. http://www.nytimes.com/2011/03/13/world/asia/13nuclear.ht ml?pagewanted=1&_r=1&sq=japanfloodsnuclearreactorwald&st=cse&scp=1. Tierney, Kathleen, Christine Bevc and Erica Kuligowski. ‘Metaphors Matter: Disaster Myths, Media Frames, and Their Consequences in Hurricane Katrina.’ Annals of the American Academy of Political and Social Science 604 (2006): 5781. Walsh, Froma. ‘Traumatic Loss and Major Disasters: Strengthening Family and Community Resilience.’ Family Process 46 (2007): 207-227. John F. Freie is Professor of Political Science at Le Moyne College in Syracuse, New York, USA. His most recent book is The Making of the Postmodern Presidency.

Death through the Eyes of Innocence: Perceptions of Death in Childhood Alejandra Freitas, Abílio Oliveira and Rute Rodrigues Abstract Throughout human history, death has been represented in various ways, depending on the customs, culture, ideology, and the way we look at life. We note that in general adults hesitate to let children get close to someone who is dying or is dead. For adults, death and children appear to be contradictory terms, but in fact, children realize very early that death exists, and thinking otherwise is a mistaken idea common among adults. Providing children with incorrect information about death leads them to feelings of anxiety, fear, imprecision and distrust. This study aimed to realize how death and life are understood by children between 8 and 11 years old. Through free associations of words, we asked the children – one hundred boys and girls – to tell us what they think, imagine and feel about death and life. The data were processed by factorial correspondence analysis. The findings indicated that girls, more than boys, represent death with fear and in a ritualistic way, while boys mostly perceive it as a feeling of uneasiness and impotence. Regarding life, boys show a more hedonistic perception than girls; girls give relevance to the interaction with others, and to the affective and emotional issues. The perceptions of girls are close to those of the 10-11 year old subjects, while the representations of boys are close to those of the 8-9 year old children. We hope to contribute to the understanding of the child’s universe, so symbolically rich in its various forms, and especially to the way that children represent death. We may also contribute to an education for death (and pain) as well as for life (and pleasure). Key Words: Death, life, children, perceptions, education. ***** 1. Introduction We do not comprehend the essence of death, and that is a good reason for us to fear it, to express unease and repulsion towards it. 1 Still, life and death are merely two different versions of a single reality, because everyone is born and we all die. 2 Although aware of death, children cannot always express their thoughts, feelings and emotions, taking into account the banning, the make-believe and the silence imposed on them by family and society. 3 Given that even adults cannot process the concept of death, they avoid the subject and keep it as far as possible away from children, conveying mysterious or fanciful ideas disguised in beliefs, values and opinions. The loss of a family member, or someone close or very important (as a pet), arouses the use of euphemisms or fantasies, because parents and other adults

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__________________________________________________________________ believe that these kind of strategies may somehow protect children, causing them to feel less pain and thus offering a coping mechanism. However, these will only generate uncertainty and deception on children and might leave them with no one to talk to. 4 If we don’t comprehend the essence of death and life, how can we explain it to a child, always so curious? Adults say that they do not wish to bother children with death but maybe they really are not prepared to deal with such a cruel reality, when they know that children are going to ask many questions about it. And it’s hard for adults to admit their fear or that they have no consistent and logical answers to give them. Through the loss of a loved one, children become aware of the inevitability of death and of their own mortality, and when an opportunity arises, they will be able to build a system of ideas, symbols and representations in this regard. The projections, fears, uncertainties and sadness of adults – their attempts to explain death, which can wind up being confused or inconsistent – can transmit to children, as they grow up, that some subjects are taboo. Given the social relevance of the topic and its role in the successful development of any child, it is essential to clarify what are children’s representations of death and life, and to what extent these representations vary according to gender and age. The present research is framed on the social representations theory proposed and developed by Moscovici. 5 The representations are created and shared by social groups, shaping their behaviour and giving them a meaning. They emerge in a specific social context and are based on values, ideologies and a categorization system, which is common to various social groups, reflecting their interaction and contribution to these representations. 6 Knowing how children think and feel in the face of death and life is a valuable tool that allows us to understand their perceptions, thus giving us a better way to deal with them and contributing to a more complete and honest education. 7 2. Main Objectives and Hypotheses The objective of this is twofold: to identify the thoughts, emotions and feelings that structure the representations about death and life in a population of school children (attending the 3rd, 4th, 5th or 6th year) aged between 8 and 11 years; and to analyse the differences and similarities of these representations in this population, depending on age group, gender, and closeness to a situation of death. The general hypotheses of this study is that given that girls tend to express more clearly their feelings or emotions towards death, 8 and the stereotypes male and female, 9 we expect that girls reveal a greater emotional involvement with death. For the children who lost a loved one, death is felt more intimately, 10 so it is expected that children who have experienced the death of a loved one in the past six months will emphasize their loss and present an affective-emotional dimension in their behaviour.

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__________________________________________________________________ 3. Method A. Population One hundred school children – girls and boys, aged from 8 to 11 years old (attending the 3rd, 4th, 5th or 6th year), in Lisbon – participated in this research. 11 B. Variables We considered gender, age and proximity to death as independent variables. The dependent variables resulted from the different representations of death and life we found in this population. C. Procedure The data was gathered collectively in the classroom. Each child responded in writing to a questionnaire comprised of four open questions: Death makes me think of...; Death makes me feel...; Life makes me think of...; Life makes me feel.... Each child expressed his or her ideas, thoughts, feelings or emotions about each of the concepts, using words, phrases, images or symbols. Initially, all words associated with each stimulus were reduced without making any categorization. The adjectives and nouns were put in the masculine and singular and verbs in the infinitive, using etymological root as a criterion. Simple Factorial Correspondence Analyses were conducted in order to identify the representations for each of the stimuli considered (as qualitative variables); and each of these stimuli was then crossed with the independent variables. 4. Results A. Ideas, Thoughts, Emotions and Feelings about Death The words most frequently mentioned for the stimulus ‘Death makes me think of...’ were sadness, melancholy and hurt. Thus, death is perceived with strong negative feelings and thoughts of malaise. Children feel very sad in front of death, showing strong discomfort, loneliness and pain; they fear the loss of someone close and an eventual separation, especially from their parents. At the same time, they also believe in some kind of life after death. We also found answers that highlight a ritualistic sense, with words as darkness, skull, coffin or cemetery (cf. Table 1). Girls show greater awareness of death than boys, associating it with the states of decomposition of the body, funeral rituals, and with the dark side of life (black, skull). The boys reveal more fear from the separation and the inevitability of death (separation, person, evil). The younger children (8-9 years), more than the older, emphasized death as something that causes discomfort, while the older (10-11 years), as well as the girls, tend to represent its ritual dimension. Those who already experienced the death of a family member or close friend, described it as strongly associated to funeral rites (darkness, black or coffin), and as something that causes great distress (agony or evil). For the other children, death generates dissatisfaction and unrest, but also the hope of immortality (or life after

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__________________________________________________________________ death), which contradicts the sense of abandonment, loneliness and loss (immortality, separation, loneliness and loss) mentioned before. In regard to the stimulus, ‘Death makes me feel...’, most words obtained from it refer to deep negative feelings or emotions towards death (sadness, sorrow, melancholy, dissatisfaction, discomfort and fear). These terms are associated with a sense of loss, longing, alienation, pain and fear of what may happen after death to the children, who would be left alone, or to their significant ones, from whom they might feel separated (cf. Table 1). Table 1: Classification of the main words from the answers to: ‘Death makes me think of...’ and ‘Death makes me feel...’ Thoughts/ideas and Emotions/feelings sadness hurt / sorrow melancholy dissatisfaction malaise separation loss agony loneliness

Thoughts/ideas

Emotions/feelings

family dead immortality end person lifeless die darkness wickedness black / skull coffin / cemetery

fear longing loneliness agony cry unhappiness separation indisposition discontent pain / distress bored / abandonment

Girls appeared to be very upset, unhappy and discontent with death, more so than boys, who emphasized the fear, agony and malaise behind death. The youngest boys feel profound sadness, or even agony, in front of death. Older boys experience more discontent, and feel unprotected and alone just as do girls. Those who experienced the death of a relative or a friend represent death as a great sadness, dissatisfaction, discomfort, loneliness and fear (or apprehension). The others evidenced, in particular, the loss, abandonment, loneliness and anguish. B. Ideas, Thoughts, Emotions and Feelings about Life For nearly three quarters of these children, life is joy, satisfaction, well-being, friendship and affection. This perception is derived to a great extent from relationships with peers and parents (friends, play, family, love, etc.) who give them reasons to laugh, and who create peace even in moments of sadness and hurt. The younger children, like the boys in general, display a more hedonistic way of representing life (satisfaction, laughter, happiness and well-being), while the older children, and girls in general reveal some dimensions associated to the

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__________________________________________________________________ interaction with others and with an affective-emotional way of living (family, laughter and love). Children who already dealt with the death of a friend or a relative showed, more than the others, a strong love for life, well-being, friends and to the family as an essential emotional support for the achievement of peace of mind. For all the other children, life has a cultural dimension (learning), taken in a hedonistic sense (laughing), and is also associated to affective-emotional dimensions when represented as difficult or unpleasant moments (for example with grief). Table 2: Classification of the main words from the answers to: ‘Life makes me think of...’ and ‘Life makes me feel...’ Thoughts/ideas and Emotions/feelings satisfaction wellbeing joy / happiness friendship sadness love hurt / unhappiness play

Thoughts/ideas

Emotions/feelings

contentment emotion

family study learn laugh peace live

When we focus on the feelings, we verify that, boys and the youngest children are those who present a highly entertaining and joyful perception of life, which is linked to the will to play and have satisfaction. Girls, like the older participants, show greater awareness of the various dimensions of life, namely satisfaction and inter-relationships with others, but also discontentment, sadness or suffering. Those who experienced the death of a close relative or friend are those who value most the single fact of being alive. They point out the importance of emotions and joy as a compensation for the loss suffered or as a way to embrace life. All the children, along with their joy to feel well, emphasize the importance of the interactions with significant others in their day-to-day living. 5. Conclusions Thinking about death raised awareness and directed attention to the end of physical life, pain and sadness. When related to a loved one, death implies unbearable uneasiness and often awakens the contradictory feeling of physical separation versus the idea of immortality. In face of the death of a loved one, what emerges is the fear and suffering for the loss, and fear of separation and loneliness coupled with the hope or belief in life beyond death. The ritualistic dimensions are also represented, expressing moments of pain, sorrow and melancholy.

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__________________________________________________________________ The feelings aroused by death exposed awareness of human fragility and the certainty of mortality. The representations that emerged highlight the pain and fear of children regarding the uncontrollability of their own deaths as well as fear of the loss or separation of those who are emotionally close to them. Life emerges, mainly, in a hedonistic perspective. The affective and emotional dimensions are extremely relevant, despite the clear recognition of the difficulties and unpleasant moments that cause discomfort. The results obtained validate the hypotheses stated for this investigation. Girls, more than boys, revealed a strong emotional involvement with death, which is associated to malaise and sadness. The children who recently have experienced the death of a close friend or a parent emphasized the loss and sadness, evoking the funeral rituals and negative feelings over the departure. Those who have never dealt closely with death denote greater hope in the afterlife or in immortality, emphasizing the interactions with others and the dissatisfaction associated to loss. Death continues to be an embarrassment in our civilization. Its presence (or imminence) generates discomfort, sorrow, agony and suffering on those who have to cope with the departure of a loved one. 12 Thus, the social representations of children about death are mainly focused on pain, agony, suffering, separation and loss. These representations generate the idea of uncontrollability, fear, anguish and sadness, which are often ignored, repressed or fed by the fanciful or incoherent ideas of adults. It is necessary, then, to listen to children, to explain or help them to discern the reason for this sadness, to make them feel safe and to recognize that they are able to understand what is going on with them and around them. Age and gender do influence the social representations of death. 13 Older children tend to share cognitive dimensions and a ritualistic perspective of death, while the youngest highlight, in particular, the feelings of malaise. Girls point out more symbolic aspects, especially practices and rituals of death, while boys express greater fear of separation around the ideas of uncontrollability and the inevitability of death. We also found, above all, a hedonistic perspective of life. The older children, as well as girls, emphasized affective and emotional dimensions associated to life, while the youngest children and the boys refer primarily to well-being and a cheerful side of life. The social representations of life and death of girls are similar to those of older children, while the representations of boys resemble those of the younger ones. This research allowed us to reflect on ourselves, on the way we perceive death and life, and on how these realities are represented by children. We must learn how to talk to children and, above all, we need to listen to them. Maybe we can also learn from their words and reactions. We can talk to them in various moments or situations in ways that are sensitive to their development and

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__________________________________________________________________ personality, helping them to express their own perceptions of life and death. Respecting their integrity, we may help them better to grow up with free minds. With this work, we hope to broaden understanding of the childhood universe, particularly regarding the way children represent death in connection to life, and thus contribute to a better education about life in its plenitude. 14

Notes 1

Abílio Oliveira, Ilusões na Idade das Emoções: Representações sociais da morte, do suicídio e da música na adolescência (Lisboa: Fundação Calouste Gulbenkian, 2008); Abílio Oliveira, O Desafio da Morte (Lisboa: Âncora Editora, 2008). 2 Philippe Ariès, História da morte no ocidente (Lisboa: Teorema, 1989), 13. 3 Robert Kastenbaum, Death, Society and Human Experience, 7th ed. (Boston: Allyn & Bacon, 2001); Elizabeth Kübler-Ross, Sobre a morte e o morrer (São Paulo: Livraria. M. Fontes, 1991). Juliana Vendruscolo, ‘Visão da criança sobre a morte,’ Medicina 38 (2005): 26-33. 4 Brenda Mallon, Ajudar as crianças a ultrapassar as perdas (Porto: Âmbar, 2001); Abílio Oliveira, O Desafio da Morte; Abílio Oliveira, O Desafio da Vida (Lisboa: Coisas de Ler, 2011). 5 Serge Moscovici, La psychanalyse, son image et son public (Paris: Presses Universitaires de France, 1961/1976). 6 Denise Jodelet, ‘Les représentation sociales: phénomènes, concept et théorie,’ in Psychologie Sociale, ed. Serge Moscovici (Paris: PUF, 1984), 357-378; Serge Moscovici, ‘On Social Representations,’ in Social Cognition-Perspectives on Everyday Uunderstanding, edited by Joseph Forgas (London: Academic Press, 1981), 181-210; Serge Moscovici, ‘The Phenomenon of Social Representations,’ in Social Representations, ed. Robert Farr and Serge Moscovici (Cambridge: Cambridge University Press, 1984), 3-70; Serge Moscovici, Social Representations: Explorations in Social Psychology (Cambridge: Polity Press, 2000). 7 João Santos, Ensaios sobre a Educação I (Lisboa: Livros Horizonte, 1991). 8 Abilio Oliveira, O Desafio da Morte; Soraia Borralho and Abílio Oliveira, 'Sentimentos das Crianças Face aos Professores,’ Revista de Educação, VII (2) (2010): 119-143. 9 Lígia Amâncio, ‘Género e assimetria simbólica. O lugar da história na psicologia social,’ in Temas e debates em psicologia social, ed. Luísa Lima, Paula Castro and Margarida Garrido (Lisboa: Livros Horizonte, 2003), 111-124. 10 Abílio Oliveira, O Desafio da Morte; Abílio Oliveira, O Desafio da Vida. 11 The number of girls (N = 67) is higher than that of boys (N = 33); the age groups (8-9 years and 10-11 years) are more balanced.

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José Rebelo, Desatar o nó do luto (Lisboa: Notícias, 2004); Robert Kastenbaum, Death, Society and Human Experience; Abílio Oliveira, O Desafio da Morte. 13 Abílio Oliveira, O Desafio da Morte. 14 Carol Melo, Viva a Vida! (Lisboa: Climepsi, 2007); Abílio Oliveira, O Desafio da Vida.

Bibliography Amâncio, Lígia. ‘Género e assimetria simbólica. O lugar da história na psicologia social.’ In Temas e debates em psicologia social, edited by Luísa Lima, Paula Castro and Margarida Garrido, 111-124. Lisboa: Livros Horizonte, 2003. Ariès, Philippe. História da morte no ocidente. Lisboa: Teorema, 1989. Jodelet, Denise. ‘Les représentation sociales: phénomènes, concept et théorie.’ In Psychologie Sociale, edited by Serge Moscovici, 357-378. Paris: PUF, 1984. Kastenbaum, Robert. Death, Society and Human Experience. 7th ed., Boston: Allyn & Bacon, 2001. Kübler-Ross, Elizabeth. Sobre a morte e o morrer. São Paulo: Livraria. M. Fontes, 1991. Mallon, Brenda. Ajudar as crianças a ultrapassar as perdas. Porto: Âmbar, 2001. Melo, Carol. Viva a Vida! Lisboa: Climepsi, 2007. Moscovici, Serge. La psycanalyse, son image et son public. Paris: PUF, 1961/ 1976. ———. ‘On Social Representations.’ In Social Cognition-Perspectives on Everyday Understanding, edited by Joseph Forgas, 181-210. London: Academic Press, 1981. ———. ‘The Phenomenon of Social Representations.’ In Social Representations, edited by Robert Farr and Serge Moscovici, 3-70. Cambridge: Cambridge University Press, 1984. ———. Social Representations: Explorations in Social Psychology. Cambridge: Polity Press, 2000.

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__________________________________________________________________ Oliveira, Abílio. Ilusões na Idade das Emoções: Representações sociais da morte, do suicídio e da música na adolescência. Lisboa: F. C. T. / Fundação Calouste Gulbenkian, 2008. ———. O Desafio da Morte. Lisboa: Âncora Editora, 2008. ———. O Desafio da Vida. Lisboa: Coisas de Ler, 2011. Rebelo, José. Desatar o nó do luto. Lisboa: Editorial Notícias, 2004. Santos, João. Ensaios sobre a Educação I. 2ª ed., Lisboa: Livros Horizonte, 1991. Vendruscolo, Juliana. ‘Visão da criança sobre a morte.’ Medicina 38 (2005): 2633. Alejandra Freitas is a Professor of the 1st cycle of basic education, teaching in Lisbon, currently working on the representations of death and dying among children. [email protected] Abílio Oliveira is an Assistant Professor at Instituto Universitário de Lisboa (ISCTE-IUL), Lisboa, Portugal, and a Researcher, at Centro de Investigação em Sistemas e Tecnologias de Informação Avançados (ADETTI-IUL), Lisboa, Portugal. He is the author of several books, namely, O Desafio da Vida (The Challenge of Life), Passagem (Passage), Ilusões na Idade das Emoções (Illusions in the Age of Emotions) and O Desafio da Morte (The Challenge of Death). [email protected] Rute Rodrigues is a Social Psychologist currently working on Suicide Symbolisms and Representations as a Research Assistant at Centro de Investigação e Estudos de Sociologia (CIES-IUL), Lisboa, Portugal. [email protected]

How Mortality Salience Affects Religiosity: Considering Life History Theory, Terror Management Theory and IQ Sarah Heany Abstract This study aimed at assessing the effects of mortality salience on religiosity, while considering life history strategy and IQ as additional predictors. After a mortality salience or control prime, 104 participants’ religiosity was recorded. Significant interaction effects were found between life history strategy, IQ, and mortality salience when predicting religiosity in multiple regression analyses. While religiosity varied drastically in the control condition − due to individual differences − in the test condition religiosity levels converged. This seemingly unified reaction to mortality salience may reveal a type of adaptive, religious grouping behaviour when facing death. Key Words: Mortality salience, terror management, religiosity, IQ, life history theory, evolution. ***** 1. Literature Review Terror management theory (TMT) suggests that human action is driven by a combination of an awareness of mortality and an instinctual will to survive, and research has focused on assessing the coping methods associated with existential anxiety brought on by mortality salience (MS). 1 TMT posits that humans employ a two-prong defence against the anxiety that MS brings, in the form of an internalized cultural worldview and self-esteem. Adopting a cultural worldview provides a sense of meaning and order to the experienced world as well as a sense of either literal immortality, with the promise of an afterlife, or symbolic immortality through consensual affirmation of norms within one’s culture. Selfesteem is gained by personal adherence to cultural norms and the perceived group approval in doing so. People generally show uncertainty and anxiety after MS manipulation, and exhibit a typical TMT response by engaging in increased worldview affiliation. TMT studies have predominantly measured a secular worldview defence outcome which may symbolise cultural immortality such as nationalism and xenophobia, 2 as well as affiliation with a sports team. 3 A tendency to favour people affirming one’s own cultural worldview has been detected, as well as the converse − negatively judging those countering one’s worldview. 4 Ingrouping and outgrouping is a common response; MS increases behavioural avoidance of outgroup members to retain consensus on the dominant worldview, showing an increased conformity to cultural norms. 5 Other worldviews are perceived as threatening to one’s own

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__________________________________________________________________ death-defying one which instigates a defensive reaction. 6 It follows that after MS people are less likely to identify with socially undesirable groups. 7 Additionally, people identify with their own group less if it is portrayed negatively. 8 The need for increased affiliation with socialised identities is unconscious and automatic and is apparent only once death awareness is no longer in conscious attention. 9 Distraction tasks, strategically placed after MS and before the outcome measure, are introduced into TMT studies to remove MS from conscious thought and allow the unconscious coping mechanisms to operate. 10 A. Religiosity and Mortality Salience Numerous researchers have conducted TMT studies with religiosity as a predictor variable, although comparatively little research has been done into the religious reactions to MS. 11 Burling measured religiosity (specifically a quest for spiritual knowledge) as an outcome after MS but did not find a significant affect, 12 however, the validity of his methodology has been questioned by Norenzayan and Hansen who provide the only other available study, 13 finding a significant increase in belief in an afterlife and in God after MS. B. Religiosity and Intelligence In what appear to have been pioneering studies in the 1920s, Howells and Sinclair each published correlations of -.27, -.29, and -.36 between degree of religious beliefs and intelligence among American college students. 14 In contemporary research, higher levels of education have shown to be positively associated with IQ scores, 15 and negatively associated with religiosity. 16 IQ is also negatively correlated with religiosity. 17 IQ has therefore been included in this study due to its documented relationship with religiosity. It is noted, however, that IQ tests have been criticised for ignoring psycho-social contexts, being culturally biased, and operationalising intelligence without a definitive theoretical model. 18 Richardson states that IQ results merely indicate a level of socio-cognitive preparedness as an effect of social class, that they test our socially accumulated knowledge which is affected by, for example, how children are spoken to by their parents. Despite the criticism, IQ tests continue to be used ubiquitously and provide the standard of measurement of general human intelligence. 19 C. Life History Theory Life history (LH) theory, originally developed for interspecies research in evolutionary biology, has more recently been adapted to form a framework for intraspecies study of human behaviour. 20 Each organism’s LH strategy is a heritable trait, conditional on environmental development, which largely determines the reproductive strategy of that organism. 21 The stability of one’s environment, the apparent risk of mortality, and the availability of resources determine how urgent an organism’s efforts regarding reproduction need to be. In

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__________________________________________________________________ an unpredictable, high-threat environment, prioritizing reproductive effort produces an increased likelihood of genetic survival, whereas turning one’s focus to long term planning and relationship building at the expense of immediate reproduction may be futile. A predictable environment, however, is conducive to designating effort towards more long term endeavours such as focused child rearing and relationship and community building. In such an environment, the reduced emphasis on reproductive effort also allows for delayed, planned parenthood and the development of novel and specialized cognitive skills. 22 The strategy employed by an organism is given the term LH speed, with a fast LH speed indicating the behaviours considered adaptive in a high risk environment, and slow LH speed indicating the behaviours more appropriate to a stable, low risk environment. In psychological research a K factor has been detected which effectively measures LH speed on a continuum. 23 This multivariate factor indicates slow LH strategy and is correlated with variables such as altruism towards family and community, religiosity, future planning, and parental investment - all cognitive and behavioural products of the somatic effort possible in a low risk environment. 24 Religiosity may flourish in a slow LH environment as a product of community cooperation. It may fulfil a function of maintaining a sense of environmental predictability in attaching meaning to experienced phenomena. In a fast LH environment it may not be a priority due to lack of emphasis on community building and altruism. The expectation of higher religiosity in more stable environments seems somewhat contradictory to what may be expected with TMT. Fast LH environments contain an ever-present risk of mortality, which is comparable to the measure of MS used in TM studies. With TMT one might expect a fast LH strategist, aware of his own mortality, to show more religiosity for the purposes of easing MS-induced anxiety. Therefore TMT and LH theory seem to generate conflicting predictions regarding which social conditions are more likely to encourage religiosity. D. Specific Research Questions: 1. What effect does MS have on personal religious beliefs? 2. How might life history speed and IQ influence these results? 2. Methods A. Participants One hundred and four students (67 women and 37 men) with an average age of 21.6 years formed the sample for the study. The sample was randomly divided into a control group of 50 participants and a test group of 54.

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__________________________________________________________________ B. Measures and Procedure Participants completed the Shipley-2 measure of cognitive functioning and the Mini-K Life History Strategy Short Form to generate IQ and K scores. 25 The test group then participated in a MS task. They responded to the following open ended requests: ‘In the space below write a paragraph or two about what will happen to you when you physically die and once you’re dead. Also write in detail about the feelings that the thought of your own dying arouse in you.’ The control group responded to: ‘In the space below write a paragraph or two about what will happen to you when you go to the dentist. Also write in detail about the feelings that the thought of going to the dentist arouse in you.’ Similar tasks have been used in much terror management research as the MS manipulation. 26 Religiosity was them measured using Revised Religious Fundamentalism Scale, 27 the Intrinsic/ExtrinsicRevised scale, 28 and the questions ‘How strongly do you believe in a God?’ and ‘How strongly do you believe in the afterlife?’ These questionnaires and single item scales have been used effectively in previous studies. 29 3. Results One overall religiosity score for each individual was calculated using unitweighted factor scoring. 30 A general linear model (GLM) was run hierarchically in order to include the relevant control variables and to test for interaction effects. In the inclusive model the control variables (sex, socio-economic status (SES), race, language, and age) were entered first followed by the main effect of IQ and the experimental condition as a dummy coded variable. Sex, SES, language, and age were not significant predictors of outcome differences and so were excluded from the final model (Table 1). The race categories White/Race3 (n=51, B=-.86, t=-4.17, p