Death is a inseparable part of life. If we are to live life honestly and without fear, we have to also accept that death is ultimately inevitable. Death should not cause us to live in fear, but rather to live our lives in the very best way that we can. It is important to not "bury our head in the sand" and instead, to make responsible preparations including financial and legal arrangements, as well as talking about our wishes with our family and friends. By understanding the rites and rituals that accompany a death in our culture, religion or spiritual group, we can better prepare for the dying and grieving process.
Dying Well. 1998. by Ira Byock, Riverhead Trade, 320 pages.
The Needs of the Dying: A Guide For Bringing Hope, Comfort, and Love to Life's Final Chapter. 2007. by David Kessler, Harper Paperbacks, 256 pages.
On Death and Dying (Reprint Edition). 1997 by Elisabeth Kubler-Ross, Scribner, 288 pages.
How To Go On Living When Someone You Love Dies. 1991. by Therese A. Rando, Bantam, 352 pages.
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. 1997. by Maggie Callanan & Patricia Kelley, Bantam, 256 pages.
How We Die: Reflections on Life's Final Chapter. 1995. by Sherwin B. Nuland, Vintage, 304 pages.
Final Choices: Seeking the Good Death. 1998. by Michael Vitez, April Saul, & Ron Cortes, Camino Books, 72 pages.
Peaceful Dying: The Step-By-Step Guide to Preserving Your Dignity, Your Choice, and Your Inner Peace at the End of Life. 1998. by Daniel R. Tobin & Karen Lindsey, Perseus Books Group, 206 pages.
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.
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