Death is the problem of the living. Dead people have no problems. Of the many creatures on this earth that die, it is human beings alone for whom dying is a problem…They alone of all living beings know that they shall die; they alone can anticipate their own end…It is not actually death, but the knowledge of death, that creates problems for human beings.
(, pp. 3–5)
The fact of human mortality, and the necessity to live with the constant awareness of that fact, go a long way towards accounting for many a crucial aspect of social and cultural organization of all known societies; and that most, perhaps all, known cultures can be better understood (or at least understood differently, in a novel way) if conceived of as alternative ways in which that primary trait of human existence—the fact of mortality and the knowledge of it—is dealt with and processed, so that it may turn from the condition of impossibility of meaningful life into the major source of life’s meaning.
(, p. 9)
Trying to cope with, avoid, understand or live with death and the knowledge of it is thus one of the main defining features of all human life and of any kind of social and cultural organization. The apparent absurdity of a life lived-towards-death therefore turns into the very source of meaning in life. Without death, much of what we do, say, think or plan would be incomprehensible or even downright meaningless. Hence death, just as much as life, is a defining characteristic of human existence.
Although the problem of death has been and in all probability will remain an integral part of human existence, death does not stand still. In itself, death is nothing. Even though death as such—death as an incontrovertible biological and natural fact of life—is a constant in our mortal lives, our comprehension of and attitude towards death—death as a “social construct”—continuously changes, albeit most often in ways almost invisible to the naked eye. In general, changes in our comprehension of and attitudes towards death are brought about by changes in our life conditions in areas such as historical, social, economic, religious, political and technological development. In short, we need to locate and interpret death in its historical, social and cultural circumstances in order to understand the impact of death in human life. Any adequate sociological analysis of death therefore needs to consider death as a historical, social and cultural phenomenon. One of those who have attempted to locate death in its historical, social and cultural circumstances was French historian of mentalities, Philippe Ariès (1914–1984), who in several important pieces of work proposed a potent and admirable analytical schema for understanding, categorizing and discussing historical changes in our “death mentality” [5,6,7]. By studying such “mentalities,” Ariès was not simply interested in what happened in the minds of concrete individuals, but by “death mentalities” he referred to intensive as well as extensive transformations in the very collective and cultural psychology of a given historical epoch (, p. 18). In fact, even today Ariès’s work in many social science studies of death in the Western world still remains the key citation and main frame of reference despite the by now many years since its publication.
This article will initially provide a short overview of Ariès’s much-cited, much-used and also much-abused work on the history of death and particularly his development of four stages of “death mentality” in the Western world from the Middle Ages to the present period (the late 20th century). Then the article proceeds first by critiquing certain aspects of Ariès’s stage-theory and then by proposing a fifth contemporary phase captured by the analytical term “spectacular death” (covering the late 20th century and early 21st century). Contrary to the final historical phase of Ariès’s writings (“forbidden death”), “spectacular death” inaugurates a revival of interest in death, dying and bereavement, professionally, politically, publicly and personally, which renders problematic the notions of taboo, denial and disappearance of death that was so characteristic of Ariès’s “forbidden death,” In this part of the article, different dimensions of “spectacular death” are proposed and discussed. The article is concluded with the suggestion that “spectacular death” signals a “partial re-reversal” of “forbidden death” and with a discussion of whether we are now experiencing a demise and disappearance of the death taboo of “forbidden death” or whether this fifth phase of “spectacular death” just as its historical predecessor is also haunted by a denial and sequestration of death.
The primary purpose of this article is therefore to summarize as well as to update the stage-theory of historical death mentalities as proposed by Philippe Ariès more than four decades ago in order to show that we need to add a new fifth phase to capture our contemporary social and cultural death scene. Admittedly, the article is much more suggestive than assertive, much more indicative than conclusive, much more interpretative than documentative, and much more polemical than characterized by historical “precision.” Moreover, its aim is not so much to test whether or not specific stages of death mentalities are historically accurate, “correct” or corroborated as it is to suggest an interpretative framework for understanding and accessing our contemporary state of play in regard to our attitudes towards and social practices and cultural organization surrounding death.
2. A Thousand Years of Death Mentality in Western History
There is not only one narrative to be told about the grand and protracted history of death, but rather multiple and indeed very different stories (, p. 68). However, the one story that has continued to reverberate throughout the international research landscape, the most cited and celebrated, is undoubtedly the one told in great detail by Philippe Ariès. He described himself as a “Sunday historian” because his professional research path before becoming what has been described as the “doyen of the historians of death” (, p. 88) had been so unexpected and unconventional starting out for thirty years archiving documents about tropical fruits (, p. 11). Despite this self-effacing, self-descriptive label of the “Sunday historian,” only very few publications dealing with the topic of death and dying in the social sciences or humanities within the last several decades have dared to commit the mortal sin of omitting the magisterial work of Ariès from their lists of references. Obviously, Ariès was not alone in trying to decipher the history of death. Many others, particularly French historians, also ventured into studying the longue durée of death, concerning themselves with labelling, defining, capturing and baptizing different epochs of death attitudes and practices in human history, including Edgar Morin, Michelle Vovelle, Pierre Chanu and François Lebrun [12,13,14]. Moreover, in recent years a new wave of interest in delineating and categorizing the magnificently complex history of death has also swept across the social sciences and particularly the discipline of sociology [15,16,17,18]. Therefore, although what Ariès once described as the “chorus of thanatologists” has been expanding quite substantially throughout especially the latter part of the 20th century, no other history of death has approximately achieved the same amount of attention, citation and recognition as that of Ariès himself.
His three major pieces of work on death—Western Attitudes Toward Death from the Middle Ages to the Present , The Hour of Our Death  and Images of Man and Death —all, with some minor adjustments, tell the same story of death and death mentalities being transformed throughout one thousand years of Western European (and to some extent also North American) history. Obviously, the real history of death does not have a starting point, nor does it have an end point. However, according to Ariès, it makes good analytical sense to divide the past millennium into four relatively distinct phases of different death mentalities in the West starting out with the Middle Ages. People clearly also died prior to this period, but Ariès—contrary to others who have included the Stone Ages as well as the Ancient Greeks and Romans in their history-writing [16,17]—sets off in his work from medieval practices and attitudes. Ariès’s four stages—”tamed death,” “one’s own death/death of the self,” “thy death/death of the other” and “forbidden/invisible death”—function quite well as a way to organize an otherwise complex and multi-facetted historical process. Admittedly, the four stages—and the almost unavoidable determinism in their sequential ordering—may appear reductionist and trivial, but it does the job, as it were, in arranging a tremendous amount of connected, semi-connected and seemingly unconnected details into a readable and impressive historical plot.
As was hinted at above, Ariès was not entirely consistent in his history-writing on death. In the first published work, Western Attitudes Toward Death from the Middle Ages to the Present , Ariès had originally only mentioned four major stages of death mentality, whereas in the much more detailed The Hour of Our Death , he listed five stages. Here we will consider only the four-stage version of his work because the fifth phase—the 16th century “remote and imminent death” squeezed in between “death of the self” and “death of the other”—is not particularly relevant to the argument presented in this article. Moreover, Ariès initially labelled the first phase “tamed death” thus insisting that although death, in and of itself, was perhaps not tame, people were successful in taming it. Later, in The Hour of Our Death , Ariès instead termed it “the tame death,” thereby indicating that death as such was in fact in the Middle Ages a tame phenomenon. Whether this was anything but a terminological gimmick or an accidental slip-up, or whether it should be interpreted as an important analytical statement is difficult to determine and should not concern us here; we will thus consistently use the original notion of “tamed death.”
Although Ariès was well aware that the history of death dates much further back than merely the last one thousand years, the analytical starting point for him was nonetheless the “tamed death” of the medieval period. To him, “tamed death” thus served at the all-important yardstick—analytically as well as normatively—for all the subsequent changes in death attitudes documented and discussed in his work. “Tamed death” was in almost every possible respect different from death in contemporary modern society—it was the, at least at times, relieving and not too upsetting culmination of an often relatively short and unpleasant life (the average life expectancy being around 30 years) lending support to Thomas Hobbes’s famous description of premodern life as “nasty, brutish and short.” Despite this, the period of “tamed death” for Ariès embodied an undisguised familiarity with death and a physical and spiritual proximity between the living and the dead evident in the danse macabre in many medieval paintings and woodcuts. Ariès wrote of these medieval people that “they were as familiar with dead as they were familiarized with the idea of their own death” (, p. 25). Death—and the buried and decomposing remains of the dead—was never far away in everyday life as people lived and died close together and hence life was lived in the conscious and inescapable shadow of death. The medieval deathbed would constitute the scene for the final farewell around which the local community would gather and communicate with the dying, who in religious imagery and iconography was also surrounded by angels and demons. Dying, death and mourning were thus public events. Religious sentiments and proscribed rituals (predominantly Catholic at that time in Europe) ensured that the sting of death was removed. Death was a prepared, accepted and solemn event without theatrics in which the dying presided. Although some of Ariès’s data material to document and describe the period of “tamed death” may seem somewhat dubious and limited in scope, he provided important insights into a death which—although undoubtedly feared and ferocious—nevertheless was an integral part of social life and an event with which one was made familiar throughout the short lifespan.
Cutting a potentially long story of death short, and without unnecessarily delving deeply into the wonderful nooks and crannies of Ariès’s treasure trove of historical detail, “tamed death” was throughout the late Middle Ages gradually replaced by the crystallizing of “death of one’s own.” This period marked a shift in death mentality that instead of focusing on death as such was more concerned with the individual and with the time of death as a moment of “maximum awareness.” The familiar ceremony of the deathbed now increasingly “became a spectacle reserved for the dying man alone and one which he contemplates with a bit of anxiety and a great deal of indifference” (, p. 34). Death, in short, became much more personal and it was now the individual’s own responsibility to secure a positive outcome of the final balancing of the books determining whether celestial peace and reconciliation or the sulfurous flames of purgatory waited in the end. Moreover, individual graves and sepulchers became much more common and tombstones became more individualized with personalized inscriptions. “Death of one’s own,” as indicated by its very denomination, was therefore about how the individual could prepare for, confront and reconcile himself with the inevitable. In the more voluminous The Hour of Our Death , Ariès mentioned a short period of interregnum described as a “turning of the tide” during the Renaissance as a metaphor for the landslide in our death mentality from familiarity with and proximity to death during “tamed death” and “death of one’s own” to increasing alienation and distance that was inaugurated by the end of “the death of one’s own.” This phase was then replaced with the arrival of what Ariès alternatingly termed “death of the other” and “thy death” or what has elsewhere been described as “beautiful death” . Whereas “death of one’s own” had centered on the importance of witnessing the actions and beliefs of the person who was about to meet his or her maker, attention in “death of the other”—coinciding with the great romantic period in European literature and art—now shifted to the experience of losing someone loved and to “a new intolerance of separation” (, p. 59). Hence mourning culture became much more elaborate and elegiac, etiquettes for prescribed mourning periods were enforced, and behavior and ceremonials were directed towards showing the deep sadness and despair associated with the loss of a beloved. Pietistic and spiritualistic “cults of the dead” testified to just how much death was now seen as a rupture and as greedy, therefore making mourners desperately seeking contact with the deceased. Victorian-style theatrics and strong and paroxysmic emotions took the role of simple ritual as the expression of sorrow increasingly became an exalted public spectacle. Graveyards were turned into monumental celebrations of the dead, while slow-moving mourning processions all dressed in black paraded the streets. Ariès partly ascribed this transformation to changes in our comprehension of the family from predominantly a financial unit to an emotional entity tied together by powerful affective bonds. Although the Victorians celebrated death, the period of “death of the other” eventually signaled the beginning of the end for death and mourning as public events and ushered in a relentless privatization and denial of everything associated with modern death, dying and mourning.
Throughout this protracted historical development of these three different and successive death mentalities over a thousand years in the West, processes of individualization, secularization, urbanization, the rise of humanism and the advancement of natural science were some of the main driving forces behind the gradual shift from one phase to the other and in many of the changes taking place in the planning, use and appearance of cemeteries, burial and disposal practices, relations between the living and the dead, eschatological beliefs, the time and place of dying and everything else associated with what is referred to as the “domain of death” (, p. 595). The final phase of Ariès’s writings was the “forbidden death” or “invisible death” so characteristic of the 20th century with its two life-wrecking world wars, its groveling admiration of any scientific and especially medical advancement, its significant expansion of our average life expectancy, its methodical questioning of theological and religious cosmologies and its increasing reliance on and spreading of information and communication technology—all of which have also had a tremendous impact on our current death mentality. Let us look a bit more detailed into this phase of “forbidden death” as it stands as a testimony of Ariès’s own time, age and death.
The confluence of two factors—major medical advancements in treatments that extend life in confluence and the unparalleled growth of our aging population—yields both great challenges and opportunities for changing the culture of dying in America. Presently, more older adults are alive than at any time in our society’s history (Xu, Kochanek, Murphy, & Tajada-Vera, 2010). With age, most older people develop one or more chronic illnesses before they die and experience a period of progressive functional dependence, frailty, and increasing needs for assistance. The continued growth of the older population, coupled with their increasing need for health care as death approaches, presents one of the largest public health challenges in history (Morrison, 2005).
When asked, the most people express the desire to die at home rather than in a hospital or nursing home, but the majority still die in an institution (National Center for Health Statistics, 2008). Estimates suggest that 56% of Americans will spend some time in a nursing home, and of those who stay longer than two weeks, 76% will die there (Kiernan, 2010). People who are terminally ill identify their top priorities as avoiding suffering, being with family, having the touch of others, being mentally aware, and not becoming a burden to others (Gawande, 2010). The SUPPORT Investigators (1995) demonstrated that death in the U.S. health care system is still characterized by ignorance of patients’ treatment wishes. We have yet much to learn about the care people want at life’s end (Institute of Medicine, 1997).
Continued improvements in medical technology fuel the temptation to ignore its limits and elude the distress of facing these limits (Cassel, 1997). The possibility for technological rescue from death supports denial and creates a defiant attitude about death and dying. People have many concerns about life-prolonging treatment, but our system of technological medical care fails to meet these needs. The cost of failure is measured in far more than dollars (Gawande, 2010). Medical technology can obscure humanistic compassion for people who are dying and those who love them.
Dying, which once was viewed as natural and expected, has become medicalized and unwelcome in medical care (Aries, 1981). Acceptance of the naturalness of dying directly conflicts with the medicalization and legalization of death that characterizes the culture of dying in 21st century America. The progressive movement of dying from the home setting to institutions may indicate that medicalization is an irreversible process (McCue, 1995). Although hospice and palliative medicine have improved the care that is potentially available, changes in attitudes have been limited.
Three recent books address the modern culture of dying. Each is aimed at a different audience, but when considered together, they deepen our perspectives on the current culture of death and dying and on opportunities for change. This review essay examines the orientation of the health care system toward care for people who are dying through the lenses provided by these books: Final Acts: Death, Dying and the Choices We Make, edited by Nan Bauer-Maglin and Donna Perry and No Place for Dying: Hospitals and the Ideology of Rescue by Helen Stanton Chapple; and Hospice and Palliative Care, by Stephen R. Connor. Each book identifies particular aspects of the health care system that contributes to a culture that both denies and defies death.
Final Acts is a collection of essays on death, dying, agency, and choice. Nan Bauer-Maglin and Donna Perry sought to inspire people to have conversations about final acts that can ease their deaths or those of loved ones. This book illustrates both how people can make informed and caring choices about dying and what can happen in the absence of planning. Although myriad statistics can be used to illustrate the numbers of people who live with comorbid chronic illnesses and those who care for them, Part I of this book brings our focus to an “N = 1” perspective and the individual lived experiences of people (with their tears) who are facing death or the need to give care. Ten personal stories spanning a variety of issues illuminate how unique and distinct each death is. Part II includes 10 perceptive and persuasive essays that illustrate the complex issues that influence end-of-life decisions.
The personal stories are engaging and illustrative of the intimacy, sorrow, joy, meaning, and pain that accompany death. Particularly for those who are involved in the study of, education about, or practice of geriatrics, these deeply moving stories remind us that dying and caregiving are not about “them” but about all of us.
“Notes on my Dying” by Ruthann Robson takes us inside the stark naked angst that can accompany serious illness and the emerging recognition of one’s terminality. Her words, “I want nothing of your good death,” illustrate the intense emotions and anguish of losing control. In contrast, “Live Longer or Live Better” by June Bingham is a poignant account of the lived experience of terminal cancer, told from the perspective of someone who is actively dying and working on life closure. This story illustrates how the knowledge of terminality can be transformative.
“Life which is Ours to Know Just Once” is the story of Nancy Barnes’s mother who as “a healthy forceful woman in full command of her faculties” had signed a living will indicating that she would not want any of what actually happened to her. Barnes identifies two truths: Whatever happens at the time of our deaths may well involve others we love as deeply as it does ourselves, and the possibilities of choice about one’s own death can silently and swiftly slip away.
“Caregiving Beulah—A Relentless Challenge” by Susan Perlstein depicts the personal and professional conflicts that are inherent when a geriatric professional is thrust into the role of caring for a parent. Perlstein writes, “Mother-daughter relationships are at best complex” and illustrates the challenges that occur with conflicting perspectives about treatment. This book also illustrates some of the complex relationship dynamics that can accompany protracted dying.
In “Emails to Family and Friends,” Sara Evans chronicles the journey of caring and caregiving that is nested within an enduring marriage and dense network of social support. Describing her parents’ tandem decline, she writes, “All of this is just another step on the path she has been on for some time, though I think for those of us who love her and who see her intermittently—it comes as a bit of a jolt.” This story clearly illustrates that the caregiving journey is full of twists and turns.
Two stories illustrate the family dynamics that accompany suicide in terminal illness. “Whose Death is it Anyway?” is written by Carol Oyster whose father decided on suicide and investigated a manner that would be quick and painless. Oyster raises the questions: “Does anyone have the right to choose death? Always? Under what circumstances?” In “The Family Tree,” Jean Levitan describes both an aunt and an uncle who committed suicide in light of chronic conditions that left them devastated from the decline. This story underscores the concept of death with dignity while recognizing that for many, dignity is taken away. “Graceful exits” can be facilitated in part by sharing with family how one feels, but they are complicated because assisted suicide is illegal.
“Elegy for an Optimist” by Mimi Schwartz raises the issues of provider communication and choice. When diagnosed with stomach cancer, her 84-year-old father-in-law was told that “without treatment he would starve to death and that isn’t a pretty sight.” Schwartz articulates the difficulty in conveying reality and hope simultaneously. People may be unable to hear both at the same time. She proposes communication with empathy, honesty, and the straightforward discussion of options.
“Buddhist Reflections on Life and Death” by Alan Pope illustrates through the concepts of Tibetan Buddhism how emotions can obscure our view of reality and how death diminishes illusions. Pope’s mother’s death allowed him to see her as if for the first time, beyond the veil of concepts that had shaped his perspectives. This story illustrates transitions in our relationships with those who have died.
“Death as my Colleague” by Mary Jumbelic is written from her multiple perspectives as a medical examiner, physician, daughter, and caregiver. Although the experience of death is universal, it paradoxically remains unique and personal to each individual not only in the terminal physical manifestations but also in the ramifications for those left behind. Jumbelic integrates the physical–spiritual connection as she writes, “My experiences have led me to believe that we should not limit our understanding and experience of death to the physical, as seen through the eyes of criminal death investigation, or the spiritual through the theories of religious beliefs. The choice does not have to be either/or’
Part II of Final Acts provide the reader with persuasive and enlightening views on the controversial complex issues that were illustrated in the personal stories. The essays address issues about which there are passionate arguments on all sides.
“The Transformation of Death in America” by Stephen Kiernan portrays how dramatically death in the United States has changed over the past generation. In the past, life ended swiftly, but today most people die incrementally. Too often, conventional health care fosters the belief that when there is no possibility of recovery, nothing more can be done. Kiernan argues that America needs to establish a responsive system for summoning excellent end-of-life care and a way to teach people how to seize the opportunity presented by slow dying.
In “Unintended Consequences: Hospice, Hospitals, and the Not-So-Good Death,” Kathryn Temple describes the ways in which neither hospital nor hospice can meet all needs. She describes an inhospitable hostile hospital environment, made worse by what may be the inevitable inadequacies of the hospice system—its inability to meet the expectations that its very existence creates. She questions the ideals that are at the core of its identity: “choice,” “care,” and “the good death.”
Two essays address medical ethics and choice in dying. “The Hospital Ethics Committee Solving Medical Dilemmas” by Natalie Hannon explicates the role and functions of these entities as working to reach consensus on recommendations to protect the rights of patients. Ethics Committees’ work is guided by the principles of beneficence, proportionality, respect for persons, justice, self-determination, and best interest. If a person wants everything done to be kept alive, including ventilators and feeding tubes, Hannon states that we must follow the patient’s wishes, but if a person wants to shun such treatments, then we must respect that preference. In her chapter on ethical principles for decision making at the end of life, Candace Cummins Gauthier addresses difficult end-of-life conflicts that arise around the question of ineffective interventions or medical procedures that are unable to achieve recovery and only postpone death. She recommends that people must be permitted to make their own medical decisions, even if it results in death, and she argues for voluntary euthanasia with requirements such as those in the Oregon Death with Dignity Act.
Assisted dying is tackled in two essays. Cherylynn MacGregor examines the definition of “a good death” and decisional jurisdiction about end-of-life decisions, which have been at the center of discussions about euthanasia. Kathryn Tucker raises the question: Is a state sufficiently compassionate to allow the choice of aid in dying to terminally ill competent people who are receiving end-of-life care but continuing to suffer? Both MacGregor and Tucker grapple with such decisions in the context of intolerable pain, futile treatment options, fears of becoming a burden to family members, and the small number of people who experience intractable suffering, even with pain and symptom management, such that they determine that hastening an impending death is the least bad alternative. They summarize the living–dying experiences of Karen Ann Quinlan, Nancy Cruzan, and Terri Schiavo that clearly have shaped public discourse on the issue of the right to die.
“Dying Down Under: From Law Reform to Peaceful Pill” provides an international “comparative other” that deepens our perspective on assisted dying. Philip Nietschke and Fiona Stewart chronicle their experience with Australia’s voluntary euthanasia law, their work with Exit International, and their development of a homemade Peaceful Pill, stating “there is no more important human right . . . than deciding when and how you will die.” Currently, discussion of assisted dying and the Peaceful Pill Handbook have been determined to be unacceptable by the Australian government.
“Ageism and Late-Life Choices” by Margaret Cruikshank clearly implicates ageism as a vehicle that inhibits choices. Older adults who want active care may be subtly coerced into forgoing the possibility by relatives who are in favor of advance directives. She identifies the cost of care as a possible motivation but argues that “the idea that old people should die to reduce medical costs signifies deep, naïve, and unquestioned ageism by unfairly seeing old patients as undeserving of such attention.”
“Physician Assisted Suicide: Why Both Sides Are Wrong” by Ira Byock underscores how the factors that make older adults who are sick and dependent on others may make them decide that they would be better-off dead. Although a seriously ill or debilitated person’s decision to commit suicide may seem entirely rational, Byock argues that a responsive community would enable people to retain a sense of self-worth through the very end of life. Moreover, he posits that public policy should support social structures that make it possible for communities to respond to those who are facing the end of life in comprehensive caring ways.
In “End of Days,” Margie Piercy asks, “Why are we more rational and kinder to our pets than with ourselves or our parents. Death is not the worst thing: denying it can be.” Final Acts, is filled with recurring themes of choice in dying. The mixture of personal experiences with persuasive and well-written essays is highly effective in creating a snapshot of dying in 21st century America.
No Place for Dying
No Place for Dying provides an extraordinarily well-written critical analysis of the current culture of hospital care for people who are dying. Helen Stanton Chapple conducted ethnographic research in two hospitals: a Catholic community hospital and a teaching hospital as well as a pilot study in the hospital where she was employed. She interviewed clinicians from a variety of disciplines about 211 patients who had died. She presents an unwavering look at the stark realities of dying in a hospital and a compelling argument for the need to change the culture of dying in this country.
No Place for Dying explores the “battle against death” and the culture of heroism and rescue, which support the common belief that hospitals rescue us from dying. Dazzling flashy technology is particularly germane in U.S. society as is interest in overcoming rather than submitting to the inevitable. Chapple argues that rescue has become the gold standard for the delivery of acute care in the United States because it resonates with ideologies of heroism, technology, individuality, and universality as well as the dramatic win over death. This priority profoundly influences how death occurs in hospitals. Three key strands of U.S. culture are identified as central to the argument: (a) ideologies involving technology, individualism, equality, and heroism; (b) growing instability of the concept of death itself; and (c) the pivotal role that hospital clinicians play in drawing lines. U.S. hospitals have become an incarnation of the society’s hope: a technological bastion standing between itself and death.
Chapter 1 presents an important backdrop for the book by incorporating the stories of five people who were dying in hospitals. In four cases, hospital demands that necessitate rescue influenced patients’ dying experience. In each instance, the person’s dying became a management problem, and the social contract for quality care ended before the person died. The fifth person had a “goldilocks” or “just right” experience. These cases focus the reader on the lived experience of dying in a hospital today and are used for illustration of important points throughout the book.
No Place for Dying addresses “appropriate” places for dying and illuminates the difficulties inherent in dying in an environment where rescue is the predominant focus. “Safe” places for dying such as hospice and palliative care are available, but they also can bring wider social invisibility and dismissal. This seclusion has been characterized as offering “privacy” to people and their families. However, the book raises important questions about how the distinction between “living with” and “dying from” is made and how American culture benefits and reinforces removal of the dying experience.
No Place for Dying conceptualizes the “Ritual of Intensification” as a core aspect of the ideology of rescue that is undergirded by the assumption that “everything” should be done. The ritual of intensification involves one or more life-saving measures: stabilizing blood pressure, placing intravenous lines, treating infection, surgery, intensive care unit care, and the management of complications. The ritual of intensification yields more time alive and fosters hope that healing will occur. Stabilization rights the wrongs of fate and focuses on more time as an unquestioned priority. The human drama of medical rescue contributes to the ideology that death can be defied.
Helen Stanton Chapple does a masterful job of portraying the ways that rescue minimizes death and contributes to death denial in our culture. In hospitals where almost every aspect of care has a code or label, dying patients are uncategorized. Moreover, dying does not have an International Classification of Diseases Clinical Modification, Ninth Revision (ICD-9-CM) code. Clinicians in the acute care setting often feel helpless when a person is dying and see themselves as being held hostage to the dying instead of feeling a sense of honor. Acute and high tech care can support vital signs and delay death, but it also promotes the illusion that death can be infinitely postponed. Chapple argues that society’s complacent confidence in its agents’ ability to perform life-saving miracles distracts us from death’s inevitability. When hospitalized dying patients are minimized, each member of society is shortchanged.
Hospice and Palliative Care
Hospice and Palliative Care is a comprehensive and authoritative text that provides an overview of the hospice and palliative care movement in the past, present, and future. In addition to providing thorough information about all aspects of hospice and palliative care, this book is seasoned with insights about changing the culture of dying in the Unites States. Stephen Connor describes the hospice and palliative care movement in the United States as once a “small rebellion” that has become a “small health care industry” and that has been a response to the previous reality of end-of-life choices.
The book begins with a comprehensive informational overview of how hospice care in the United States is organized and delivered, including the history of hospice, hospice philosophy, and the standards for care. Interdisciplinary team functioning and roles, symptom management, psychosocial and spiritual care, and community education are described in a clear and informative manner (Chapters 1–6).
The presentation of information on all aspects of hospice and palliative care is strengthened by use of conceptual frameworks. The delivery of hospice and of palliative care is discussed in the context of, and situated on, different trajectories of dying. An important link is made between individuals’ reactions to the knowledge of imminent death and stage theory, which illuminates for us the issues and process that people experience along the course of an illness and when facing death. Bereavement care, which is a fundamental aspect of hospice and palliative care, is presented within the conceptual models of normal grieving, pathological grief, and depression, all of which are used to underscore the risks that contribute to poor outcomes.
Community engagement is described as the function by which hospice programs “tackle the continuing pervasive avoidance and denial of death and dying.” Through work that includes support and counseling after traumatic community and school events, as well as community and volunteer education, hospice programs demonstrate and model acceptance of death. Direct experience with a hospice community program seems a key to deconstructing illusions about, and denial of, death and dying.
Hospice and Palliative Care provides an in-depth look at the challenges facing the hospice and palliative care community. The unique and distinct management issues are captured by the phrase, “We don’t make widgets,” which characterizes the challenges “inherent in running a business that at the same time must function as a vehicle for the noble expression of humanity.” Similarly, hospital-based palliative care programs have to justify a cost-avoidance model with fiscal administrators who may be more supportive of revenue streams from new technology for cutting edge procedures.
Physician attitudes are a significant challenge. Most physicians view the cure or control of major diseases as primary and the relief of suffering as perhaps secondary. The health care system does not value palliative care. As a corollary, Stephen Connor notes that hospice and palliative care providers suffer from arrogance, thinking that they know what is best for the person when choices are made for many complex reasons. Provider attitudes are symptomatic growing pains of this movement.
Pervasive societal denial of death is underscored as a challenge to hospice and palliative care. Death, once a home-based experience, has evolved to be a far-removed event that happens in hospitals and institutions. Hospice has become a modern reminder of death. There is debate about the use of the word “hospice.” Some argue that the name is limiting and has a negative connotation that equates to the perception that hospice = death. However, whatever the care is called, it will be associated with dying.
In sum, the hospice movement began as a revolution against the way the health care system treats those who are dying. It is now a positive force for excellence in the care of those facing life-threatening illnesses. However, whether hospices will succeed in changing the culture of dying in the 21st century is uncertain. Stephen Connor argues that public policy currently limits reimbursement for hospice care so that many who could benefit are unable to do so. Moreover, it also will be incumbent upon hospices to stretch beyond their own limitations to improve access for people of color and those with limited resources for caring.
Conclusions and Recommendations
Death is inevitable, but severe suffering is not. We must all look toward the day when compassionate and skilled end-of-life care becomes so much a part of the fabric of American communities and the American health care system that it is not necessary to request it—it is simply offered when needed (Foley, 2003).
The culture of dying in 21st century America is in flux. The three books reviewed in this essay reflect on both the current challenges and the opportunities for change. Each identifies aspects of our medical system that have become barriers to compassionate and skilled end-of-life care. These books deal with issues of choice and dying, where we die, and the care we receive. Each provides illustrations of how our death-denying and -defying culture has contributed to the ideology of rescue and death avoidance that currently prevent compassionate care at life’s end from being part of the fabric of health care. Each presents hope that one day this care will simply be offered when needed.
The books that have been reviewed in this essay can each be of great value for educators and students. Final Acts provides a collection of moving stories and compelling essays that would enrich courses in aging as required reading or to generate classroom discussion and debate. No Place for Dying presents challenging views of hospital care for people who are dying that can enlighten students in the health professions. This book also would add value to courses on health care policy and could be used as an example of ethnography in courses on research methods. Hospice and Palliative Care provides a well-organized and synthesized primer on the delivery of hospice and palliative care that could be used in courses for health care professionals, on death, dying and end-of-life, or to help prepare new employees on a hospice or palliative care team. Finally, it is important to note that each of the three books incorporates case material that always enriches education and each includes lists of additional references (e.g., books, movies, articles, and websites) that can be useful in planning courses and facilitating student learning.
The hour of our death,
Preface. In Approaching Death,
National Academy Press
Transforming the culture of dying,
Institute of Medicine,
National Academy Press
The transformation of death in America,
Final Acts: Death, Dying, and the Choices We Make,
New Brunswick, NJ
Rutgers University Press
The naturalness of dying,
Journal of the American Medical Association,
Health care system factors affecting end-of-life care,
Journal of Palliative Medicine,
National Center for Health Statistics,
Deaths by place of death, age, race, and sex: United States, 2005. Worktable 309,
A controlled trial to improve care for seriously ill patients,
Journal of the American Medical Association,
Deaths: Final data for 2007,
National Vital Statistics Reports,
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