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BOOK REVIEW |
Division of Health Policy and Management School of Public Health University of Minnesota Minneapolis, MN 55455
Everyman, by Philip Roth. Houghton Mifflin Company, Boston, MA, 2006, 182 pp., $24.00 (cloth).
Sick to Death and Not Going to Take It Anymore: Reforming Health Care for the Last Years of Life, by Joanne Lynn. University of California Press: Berkeley. CA, 2004, 205 pp., $24.95 (cloth). online edition available at http://www.growthhouse.or/sicktodeath/index.html
Taking Care: Ethical Caregiving in Our Aging Society, by The President's Council on Bioethics, Washington, DC, 2005, 309 pp., no price listed (paper), free on request.
The end of human aging is death. Many people fear death, and most fear dying. Because most death in America occurs in old age, gerontology intersects with fields concerned primarily with death and dying. This essay discusses three books, each of which provides a particular lens on death in old age, in this case from medicine and public policy, bioethics, and literature.
Joanne Lynn's book, Sick to Death and Not Going to Take It Anymore: Reforming Health Care for the Last Years of Life, presents the perspective of a geriatrician, policy analyst, and ethicist whose practice and research has for decades dealt with the clinical nuances of how and where people die in America—and how doctors and health care providers can make death better. As her subtitle indicates, the book is propelled by her outrage that we cannot provide better endings, and that so many people die in pain, poverty, and loneliness, as victims of the lack of a reliable care system. Lynn makes a convincing case that the problems are solvable. "Nothing," she writes, "is in the way except habit and inattention" (p. 3).
Taking Care: Ethical Caregiving in Our Aging Society is a report issued by the President's Council on Bioethics. Its express purposes were to "provide a humanly rich account of the caregiving dilemmas—social, familial, and personal—and to offer some important ethical guidelines for the care of persons who can no longer take care of themselves" (p. xvii). The Council chose to make dementia, particularly Alzheimer's disease, the centerpiece example of this carefully argued and controversial treatise on what morality requires of family caregivers and a paid caregiving establishment who strive to make difficult decisions and choose the "best care" for those who cannot choose for themselves when the needs arise. The resultant report is eloquent and elegant, and in many ways a useful resource for gerontologists. But it achieves the status of a "humanly rich" account only in a narrow way. It focuses too much and too bleakly on dementia, and it pays too much attention to decision-points that might hasten death, and too little attention to issues of everyday life. Moreover, the assumptions built into framing the public policy tradeoffs are maddeningly limited.
Finally, Everyman, by Philip Roth, is a stunning fictional masterpiece about the aging, health, and death terror of an ordinary person who is experiencing the repeated assaults of serious illness, and living with the specter of looming death. This universal human predicament is faced by a nameless protagonist, Roth's "Everyman." The novel appeared in 2006 when Roth himself was 73. Gerontologists will be amply rewarded if they add this book (and for that matter, other novels) to the numerous scholarly books and articles about death and dying that are written from a social science or medical perspective.
Eventually Fatal Chronic Illness
All these books, even Roth's novel, share a factual understanding of the usual ways of dying in the United States, where death for the most part has been pushed into old age. Joanne Lynn's work has provided an influential framework for such understanding, showing that death increasingly occurs in old age, is typically due to chronic disease, and does not fit neatly into a single pattern. Indeed, Lynn is much referenced in Taking Care, as well as in a journalistic account of dying by Stephen P. Kiernan, Last Rights, which is reviewed in another essay in the book section of this issue of The Gerontologist. Let us, therefore, begin with Sick to Death, by Joanne Lynn. In the spirit of Osler (1898), who was closely attentive to the specific symptoms associated with various causes of death, Lynn devoted earlier writing to the details of how to alleviate discomfort and improve the experience of death from various conditions—a pursuit that has, arguably, been abandoned by modern physicians. She also was principal investigator of an ambitious, multi-site clinical trial of an intervention meant to help seriously ill people have their end-of-life preferences honored, known as the SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment. Lynn's prior work is extensively referenced and drawn upon in this book.
In Sick to Death, Lynn presents three broad patterns for death in old age: (a) death after a short period of serious illness, such as is associated with an advanced cancer; (b) death from organ failure after a more prolonged period of living with the exacerbations of a chronic disease with acute flare-ups, such as is associated with heart disease, pulmonary disease, or diabetes; and (c) death from a protracted, progressive degenerative disease, which would include death from Alzheimer's disease. These prototypes are obviously not so clear-cut in real life. Sometimes the end phase of chronic disease is a generalized deterioration which resembles the third type. And sometimes the course of a person with a progressive deteriorating disease that causes gradual and inexorable "dwindling" and frailty is interrupted by a malignancy that brings death swiftly or complicated by a simultaneous chronic disease which also cuts the person's lifespan. But as a heuristic, Lynn's classification works well enough to make important points about the mismatch between the health care system in America and the needs of people who are dying. Certainly, the hospice model, which suggests a transition from cure to care, fits poorly with the facts of how most people live before their deaths. In other writings and to some extent here, Lynn argues for a Medi-Caring program wherein beneficiaries can opt to use their Medicare benefits for a caring as well as a curing program. Yet, in this book she is also explicit about the difficulties of a sharp separation between life-extending treatments and comfort care. "In most medical situations," she writes, "the goals of living comfortably, independently, and longer are not in conflict, and, quite reasonably, patients want them all" (p. 39).
Lynn makes clear that physicians and nurses are wretched prognosticators for individuals, using the phrase "eventually fatal chronic illnesses" to highlight the uncertainty of prognoses of months remaining. Rather than expecting physicians or nurses to state how close their patients are to death, Lynn endorses the "no surprise" question to identify people who need close medical management and palliative approaches with or without curative approaches. The no-surprise question is: "Is this person sick enough that it would be no surprise if he or she died within the coming year?" (p. 44), or variants of it. Lynn's premise is that many people can live well with serious, eventually fatal chronic illnesses even when the answer to the no-surprise question is affirmative. "When supportive services ensure that people coming to the end of life can count on being comfortable and comforted, we ordinarily have highly meaningful experiences in the time that is left" (pp. 1–2). Lynn's other premise, confirmed by her own and other's research, is that the United States lacks a reliable system to provide good care at the end of life, and even lacks the language to describe the needs of people with serious, ultimately fatal chronic illness.
Lynn's book is organized to array the facts about demography, illness, and health care and its financing (chapter 1), to create new concepts to classify and interpret those facts, including the classification of trajectories towards death (chapter 2), to provide examples of good care (chapter 3), to examine political forces for reform (chapter 4), and, finally to propose some immediate and longer-range reforms (chapter 5). To remind the reader that people with biographies are the focus of Lynn's policy recommendations, the book reprints poignant articles by Carol Levine on her care for her gravely disabled husband, and by Donald Berwick about the tragic quality lapses and missed opportunities in the care of his father, a retired physician with Parkinson disease, mild dementia, and finally a hip fracture.
Chapter 3, on exemplary programs—which Lynn refers to a bit preciously as "gems"—is less satisfactory than the two preceding chapters. It consists of a potpourri of programs at different levels of organization, including Hospice, PACE (Programs for All-Inclusive Care for the Elderly), various chronic disease management models, and various caregiver support programs. Perhaps necessarily, the gems are fragments of programs and ideas that are not combined in a coherent piece of jewelry given the fragmentation of health care in the United States. Lynn is clear in her view that the systems of care offered should provide for the coordination of resources needed. "People who are sick enough to die should not have to customize their own care; the care system should make it almost automatic to get services that enable people to live well through a period of serious disability before death (p. 57)."
The last two chapters suggest possible constituencies for reform and principles to guide such changes. Lynn asserts as moral premises that "very sick people should not have to be afraid of their health care system" (p. 121), and that we should "seek a set of care arrangements in which sick people do not need to be lucky to have the care and support they need, at the right time, every time" (p. 121). The final chapter is an exhortation to action, conveying a sense of urgency. One could quibble with some of the details. For example, Lynn is enthusiastic about POLSTs (Physician Orders for Life Sustaining Treatment), written physician orders which were pioneered in Oregon as vehicles to follow the patient across health care providers to avoid confusion and loss of advance directives, yet the evidence does not seem to justify her enthusiasm. (The Council on Bioethics raises a concern that the POLST may even be too efficient at times when new deliberation may be warranted.) Lynn also argues for penalties against providers who do not follow advance directives, whereas some authorities are wondering whether advance directives themselves are a flawed vehicle to guide the end of life. But the overall thrust of Lynn's suggestions is practical. She ends with a list of goals, short-term reforms to be implemented right away, and approaches to generate the professional and public will to move ahead. Foreshadowing the unfortunate aphorism of former Defense Secretary Rumsfield that we go to war with the army we have, Lynn says at the beginning of the book that "we all have to live out our days using the health system we establish" (p. 3). But she leaves no doubt by the end of the book that we have collective responsibility to change a system that she convincingly shows is simply not working to provide good care for all of us.
Dementia, Prudence, and Benefiting the Life the Person Now Has
Taking Care was meant to stimulate dialogue about moral obligations to older people nearing the ends of their lives, and in particular those with dementia. Prepared by the President's Commission on Bioethics under the chairmanship of Leon R. Kass, its conclusions are drawn from a wide-ranging literature review (from classical sources to bioethics to modern social science and health services research) and many hours of testimony and discussion. The Council's meeting notes and background papers are available on the Web and make interesting reading in themselves (see http://www.bioethics.gov/topics/end_of_life_index.html, visited on May 16, 2007; for those who don't mind reading complex material at a computer or printing out lengthy material, the full text of the report from transmittal letter to appendices and bibliography is also available on the Web at http://www.bioethics.gov/reports/taking_care/index.html, visited on May 16, 2007) Leaders in gerontology, including Robert Binstock, Thomas Cole, Robert Friedland, Charles Fahey, and Joanne Lynn herself, provided detailed testimony as did experts in bioethics and in Alzheimer's disease and its care. Although the work of these experts is used extensively to describe Alzheimer's disease, demographic trends, and long-term care, many of the prescriptive formulations of those who testified are markedly absent. Although at the end, a Presidential Commission on Aging Dementia and Long-Term Care is recommended, this book shies away from the policy world and collective solutions.
The scope of the project is broad, with aging and death situated within the life cycle. Recognizing the truism that all animals grow and die, the Council agues that human aging is not merely a biological process but "a psychological, existential, social, and religious one"—though it recognizes that organizing religious beliefs and comforting visions of an afterlife are not universal. What they find to be almost inevitable for those who age with cognitive functions intact, is the need to change one's self image, and social and family roles as one's body changes. Aging, they write, "involves looking back on one's past experiences and looking ahead to one's shortening future; it involve treasuring life and independence as long as possible and accepting dependence and death when they can no longer be resisted" (p. 21). Although they do not say so explicitly, their horror of dementia may be rooted in the way the disease ultimately prevents such self-conscious processes. The virtues and moral obligations of both the person who is dying and, even more so, because of the immediate focus on dementia, the family and professional caregivers involved with the dying person make up the rest of the report.
There is much in Taking Care to admire. The report contains a well written and argued discussion of the ethical demands on caregivers. For gerontologists who are neophytes to bioethics, it contains useful definitions of terms and clarification of principles. The report includes an excellent history of how advance directives evolved in law and bioethics.
Also helpful is a discussion of virtues of old people (including a summary of those enumerated by William F. May): "courage, including the capacity to keep one's fears in check even as one's prospects worsen; simplicity, including the capacity to ‘travel light’ on one's final journey; wisdom, including the avoidance of excessive nostalgia and excessive remorse; and humor, including the wit that sometimes flourishes when the carefulness of middle age is no longer required" (p. 23). To these, the report suggests adding gratitude and acceptance, though no case is made for their addition. I returned to the original essay by May (1986) and found the addition of patience, and integrity, among the virtues, and an elaboration on prudence, a subsidiary virtue of wisdom. The medieval moralists, May explains, divided this virtue into three components: memoria, characterizing one who is open to his or her past without "retouching, falsifying it, or glorifying it" (p. 57), docilitas, which is an "alertness, an attentiveness in the moment" (p. 58), and solertia, which is a readiness for the unexpected (May, 1986). Later in the report, the Council recommends prudence as the central moral compass for caregivers, referring to it as "that excellence of heart and mind that enables us to see deeply and wisely into the truth of things—deeply enough to discern the goods that are present, wisely enough to identify the best means available for pursuing those goods, without violating the norms of right and justice" (p. 120).
Taking Care develops many convincing positions: e.g. that aging is not a problem to be solved or avoided; that over-reliance on autonomy and independence as a principle is problematic given conditions, such as Alzheimer's disease, that render people dependent; that advance directives such as living wills can at best be a partial guide to decision-making; and that adult children are not ethically compelled to put the needs of their elderly parents beyond all other competing demands. Decision-makers are encouraged to consider the person with Alzheimer's as he or she is now, rather than the person he or she might have been when cognitively intact.
Two of the conclusions are controversial, although I find both have merits. The first of these controversial stances is that an advance directive to limit life-sustaining treatment under circumstances such as incurring dementia can and in some instances should be over-ridden by caregivers to benefit well-being of that person in the present. Similarly an advance directive requiring heroic treatments could also be overridden in the interests of the person in the current situation. The Council finds some limited wisdom in advance directives as one guide to action, but provides many arguments against relying on them exclusively—beyond the obvious limitation that most people do not have them in place. The Council sees more value in the appointment of a proxy decision-maker for health decisions than in living wills prescribing and proscribing directives on specific treatments in specific circumstances. In contrast to a review in the Hasting Center Report (Jennings, 2006), which finds the chapter on advance directives to be an odd digression offering nothing new, I find that chapter particularly interesting, including its discussion of why advance directives fail to achieve their own objectives. However, the process of acting to benefit the self that a person has now become is at best an endeavor fraught with peril, and adds the values and preferences of the current decision-makers to those that the person now with Alzheimer's disease might have held at the time the advance directive was crafted.
The other controversial position is the call for "firm and permanent safeguards against inhuman solutions like active euthanasia or promotion of assisted suicide, or proclaiming some lives not worth living" (p. 47). Euthanasia surely should be beyond consideration. But many have argued in favor of physician-assisted suicide, which is permissible under Oregon law. The Council's report offers one place to find compelling arguments against physician-assisted suicide, one of which is the distortion of the role of healing professions.
Since Taking Care appeared late in 2005 it has been greeted with enthusiasm by many gerontology educators and adopted as a course text or reading. Notwithstanding the praise I have for many of its arguments, I would be saddened to see this report adopted wholesale by gerontologists for several reasons. First, it is replete with overblown negative rhetoric about aging and dementia—almost contradicting its own constantly expressed opinion about the worth of people with dementia. For example, we read of "protracted dotage and feebleness" (p. 14); "a lengthy twilight of disability and dwindling (p. 19);" the "ravages of incurable and progressive dementia and the prospect that our life's drama will end with final acts marked by gradual descent into mindlessness" (p. 38); and that "essentially all aspects of human mental capacity are first disordered and then destroyed, with the patient at the end bedfast, helpless, and mute" (p. 35). Alzheimer's disease in a family, we are told is "often experienced as a terrifying and stigmatizing curse" (p. 41). But it is not only Alzheimer's disease that horrifies! Elsewhere, the report says that "Alzheimer's disease is not the worst human affliction, nor is it the only condition that oppresses the frail and feeble elderly" (p. 44).
On the same theme, even those with mental capabilities and physical incapabilities, although seen as "still able to savor some of life's joys—experiential, interpersonal, and intellectual—still are tortured. ... The grave imbalance of physical and mental power also often brings its own special misery—including the feeling of being trapped inside a body that does not respond to ones desires, needs, and efforts at control" (p. 30). The report describes "the inability to control one's bowels, with enough awareness to be embarrassed by it" and "the heartache of watching loved ones sacrifice so much on one's behalf" (p. 30).
The family predicament is also conveyed in overblown language: "The depression, the outbursts, the loss of self-command, the disappearance of civilizing inhibitions, the incontinence, and the inability to recognize or interact with love ones tear at the heart of spouses, children and friends" (p. 44). The report suggests that "there is a powerful temptation to believe that elderly persons' lives are so limited that human fellowship insignificant, a temptation to regard being with them as little more than sitting awkwardly in small room in a smelly nursing home" (pp. 25–26). We can give the report's authors high points for conveying the horror and degradation associated with Alzheimer's disease and other aging-related problems. But this repeated strong language distorts the full reality of the family members and clients that gerontologists can recognize over the whole trajectory of Alzheimer's disease. Such pains have been taken to vividly depict decline and decay and family despair, that the caveats about more positive pictures seem perfunctory. With this sour vision of aging and degenerative diseases, it is no wonder that the Council worries about and warns against abandonment and betrayal of frail older people.
Then too, the Council's account of care systems lacks precision and, at times, accuracy. The report presents the image of women caring for their "enfeebled parents or in-laws while holding down jobs and caring for their own small children" (p. 45), despite that typically no small children remain in the picture and the caregiving women are themselves over age 60. Or in another example, "the differentiation of Alzheimer's disease by name has successfully launched effective and focused research enterprises, but it has done so at the price of human disquiet and even terror, often inducing depression in the worried well and sometimes even leading them to suicide" (41–42). Despite the well-publicized case of Janet Adkins, one of the first Kevorkian "patients," who ended her life after a diagnosis of early Alzheimer's, data do not seem to suggest a frequent suicide response in those with early Alzheimer's, let alone among the worried well. Data would have been desirable also to support the statement that "preoccupation with individual fulfillment has weakened many intergenerational attachments, and the privileged place of gainful employment and career advancement in our notions of self-worth has diminished the time available for and the value we place on caregiving" (p. 46). As I read the literature, the value placed on caregiving is largely unabated. Also unsupported is the statement that "with new nursing practices that emphasize cheerful and responsive environments, patients often do better in nursing facilities than they do at home" (p. 43). In general, the report seems to have a hazy idea of home and community services, at one point referring to meals on wheels and home health care as its main planks although a less-medically oriented personal attendant service is more important than either of the former services. And the book takes note of the indignities of living with physical restraints in nursing homes as part of the consideration of an ethical decision-maker judging the quality of the persons current life, as if physical restraints were a given instead of a misguided care practice slated for elimination. Several times, long-term care insurance is mentioned as a positive possibility, despite the fact that testimony on it contained in the Council's records ranges from mixed to highly pessimistic. Finally, more than once the report pits old against young and suggests strife in an aging society "if older people increasingly vote their class interests as elderly" (p. 11). Ignoring the word if and the strong evidence of solidarity across generations, the report envisages the "unwholesome possibility" of intergenerational warfare "as people insist on securing their own advantage with little regard for the generational common good and with no organized voice for the rising generations" (p. 11).
The report is at its most troubling when it discusses the common good. Readers are frequently admonished "to avoid allowing long-term care for the elderly and medical care in general to crowd out every other civic good—such as educating the young, promoting human excellence in the arts and beyond, and providing for our common defense" (p. 47). The final chapter returns to this theme, suggesting that we should aim for best care for the elderly people while avoiding the danger of intergenerational conflict over scarce resources, meeting obligations to children, and avoiding a drain on the economy. The report acknowledges that wealthy societies may be able to afford "nursery schools and nursing homes," but its conditional acknowledgment is immediately qualified by a leap to the obvious point that no society can afford absolutely everything that may be desirable. True, but the wealthiest society in the world could surely get closer to a full range of desired services for all age groups, and need not trade-off nursery schools for a wide range of long-term support programs (even including some improved nursing homes).
While framing the problem, the report discusses the difficulties of paid long-term care jobs, including "minimum wage, difficult relationships with patients, language barriers, lack of health insurance and hindrances to immigration" (p. 18). Yet, minimum wages and lack of health insurance for workers are not immutable conditions, even though this report takes them as given. Justice might require improvements in wages. Perhaps it is unreasonable, given the composition of the Council and its stress on personal ethics, to have hoped that it would have more thoroughly addressed income distribution and social benefits for the common good as ethical issues. Even in proposing a federal Commission for Aging, Dementia, and Long-Term Care, the recommendation is that the commission should consider long-term care in the light of other civic goods, make sure public benefits go to the "truly needy," and avoid "any temptation to propose a complete reworking of the entire American health care system or wholesale reform of Medicare or Medicaid." This seems to be a political viewpoint rather than ethical analysis, as well as cramped aspiration to guide our future. Many of us would like to engage once more in reforming the American health care system, not excluding Medicare and Medicaid. Yielding to "temptation" is a poor way to characterize that endeavor, though contemporary politics sometimes make health reform efforts seem as futile as the futile care ethicists so often discuss.
The greatest contribution of this book is in the area of the ethics of caregiving, and its development and application of principles for decision-making in hard cases. The hard cases all involve death and dementia, including decisions about initiating or withholding life-sustaining care, and treating or refraining from treating concurrent illnesses that, untreated, might shorten life expectancy. Although these discussions are important, it is somewhat disappointing that the work is so focused on decisions on death itself. They wisely try to get beyond legalistic and formulaic approaches, a wisdom that calls to mind the views of gerontologist, Monsignor Charles Fahey as he discusses ethical approaches to being with people experiencing intermittent progressive frailty in their later years, including those in nursing homes.
When I first became drawn to the nexus of aging and bioethics in the mid 1980s, most of the dilemmas, difficult cases, and ethics discourse in the bioethics literature concerned the end of life. Questions about the kinds of duties and responsibilities we have to each other in families and communities, and the nature of a good old age most often were reduced to discussions about the initiation, refusal, or withdrawal of life-sustaining treatments, and the morality and utility of procedural and legal vehicles such as living wills, health proxies, and do-not-resuscitate orders. Ethical issues related to care of Alzheimer's disease and other conditions accompanied by cognitive impairment, were concentrated on defining competence and decisional incapacity, and determining how decisions should be made for those who lack decisional capacity. These discussions were ordinarily framed by examining what the principle of respect for human autonomy would require, as well as the duties of beneficence and fidelity on the part of health care professionals attempting to honor autonomy, do good and first do no harm, and faithfully perform fiduciary duties to patients.
Although end-of-life decision-making is undoubtedly fraught with import, and despite the anxieties for practitioners and organizations who must act (or decide not to act) amidst ambiguity, old people at the end of lives deserve a change of bioethics subject. Moral implications abound for health care and social service personnel in the everyday lives and care of older people and their families who are served by and must cope with health care policies and institutions of the United States. Even when death does not hang imminently in the balance, many small decisions of health care providers have ethical import, and would benefit by prudent discernment. So far only a few writers have concentrated on life in nursing homes or as home care clientele from the perspective of relationships among the living, or have questioned the fairness and morality of the institutions and public benefits created to serve frail older people, or have concentrated on the dilemma arising from the impulse to protect older people while refraining from interfering with their autonomy (Agich, 1993; Holstein & Mitzen, 2001; Kane & Caplan, 1990, 1993; Lidz, Fischer, & Arnold, 1992; McCullough & Wilson, 1995). Although the President's Council urges that the quality of life of the person with dementia be the basis for end-of-life decisions, little attention is given to dilemmas on the way to improving their existential condition or ways that care practices and policies can lessen burdens for families.
Finally, important as Alzheimer's disease and dementia are, this book conflates dementia with aging itself in a worrisome way. And the book is deliberative and solemn but lacks a sense of anger or outrage for the treatment of many elderly people, particularly those with Alzheimer's disease and no close kin. Whatever passion is found in these pages is devoted to describing Alzheimer's disease as a state of horror and to the specter that frail older people might have their lives deemed worthless and deliberately curtailed by assisted suicide or euthanasia. The term betrayal is employed more than once to depict this type of infrequently occurring abandonment, while the Council largely ignores the common abandonment of people to life and death in age-segregated institutions. For all these reasons, we should consult Taking Care and benefit from some of its analyses, but refrain from making it a mainstay of ethics resources used by gerontologists.
The Inevitable Onslaught
In the New York Times Sunday book review section, an essay by Jerome Groopman, author of How Doctors Think, recently described his seminar for freshman at Harvard College where students read a dozen literary works about health care and dying. "It is in literature," Groopman concludes, "that they will find the sharpest revelations about the dilemmas of physicians and the yearnings of a patient's soul" (Groopman, 2007). He planned his spring semester to end with Everyman, by Philip Roth. Everyman is an anonymous hero—or perhaps anti-hero—who faces illness, system deterioration, and death without religious consolation. At the cemetery, he speaks to his parents' bones in a passage quoted by Groopman. In the voice of the author, Roth adds, "The bones were the only solace there was to one who put no stock in an afterlife and knew without a doubt that God was a fiction and this was the only life he'd have" (p. 179).
As in medieval morality plays that depict the journey to death, the protagonist has no name, and the experience is made universal. Yet with the descriptive particulars that characterize all Roth novels, this Everyman's circumstances, life course, family, personality, relationships, thoughts and feelings, and his medical ordeals are offered in great detail. The short potent novel begins with the protagonist's burial where many of the named characters in the book are present. These persona are later more fully identified as the novel moves backward and forward across all his experiences with illness and near-death. We come to know this protagonist, an artist in an advertising agency, three-times married, alienated from two of his children, imperfect and prone to self-indulgence, yet for all of it striving to be a good man, one who sacrificed his dreams of living as an artist to meet material responsibilities to his family. The final years of his life play out in a retirement community on the Jersey shore where he paints and teaches art, both pursuits that he abandons as futile at the end. His desire for life in the face of imminent dying is highlighted by the fact that fears of another 9/11 propelled him to flee to the Jersey shore.
Everyman's health problem would fall into Lynn's second category of ultimately fatal chronic disease, marked by dramatic quintuple bypass surgery at age 56 and, after a stable period of nine years, annual surgeries every year thereafter. The protagonist lives in the world of stents and arterial bipasses and surgical repairs of former surgical repairs. In his sixth annual sequential surgery, a defibrillator is implanted, making him even more agonizingly conscious of his mortality. "I must, I must, he thought, my six stents tell me that I must one day soon fearlessly say goodbye" (p. 164). And he rails against this impending fate. "Life's most disturbing intensity is death. It's because death is so unjust. It's because once one has tasted life death does not feel natural" (p. 169). Under the impetus of these successive blows, he remembers a hospitalization for a hernia when he was a child, and near-death from an infected appendix and peritonitis as a young man. After recovery, he had put these traumas aside. "Twenty-two years of excellent health and the boundless self-assurance that flows from being fit—twenty-two years spared the adversary that is illness and the calamity that waits in the wings. ... he would worry about oblivion when he was seventy-five" (p. 169). When he began living with heart disease, putting his worry into the future became increasingly more difficult. Thinking of his parents, he muses: "No hocus-pocus about death and God or obsolete fantasies about heaven for him. There were only our bodies, born to live and die on terms decided by the bodies that lived and died before us" (p. 51). In his stance, we see many of the virtues laid out by the Council for one living near the end of one's days: courage, humor, prudence (in the sense of discernment), and integrity. He knows death is inevitable, but it does not feel natural to him.
Everyman faces his fate and his final surgery literally alone. He is considerably brave in his anxiety—though at one point he thinks to live with his adult daughter, and at another time, reaches out again to his adored older brother from whom he had withdrawn in fury because of Howie's relentless good health, even while despising his own hatred and while longing for his brother's solace.
But though the nameless hero is alone with his own experiences, he is one of a lonely crowd, living out a variation of a theme for almost everyone around him. In his retirement complex, others, including some of his art students, are gravely ill. At the art classes, health status is the major subject: "their personal biographies having by this time become identical with their medical biographies and the swapping of medical data crowded out nearly everything else" (p. 80). One of Everyman's most promising students, after succumbing to physical pain in class, confides her unbearable agony and her shame at being unable to hold the pain at bay. A few weeks later she commits suicide. In rapid succession as the novel comes to a close, his second and most beloved ex-wife is felled by a stroke, and the next day he learns of the illness or death of three of his former colleagues. As he telephones two of these friends to participate in what he knows is false reassurance, and the widow to offer condolences, he reflects that "old age isn't a battle; old age is a massacre" (p. 156). Our hero's mantra in facing this massacre was the same as his words of comfort to his young daughter in an early crisis. "[T]here's no remaking reality. Just take it as it comes. Hold your ground and take it as it comes. There is no other way" (p. 79).
Finally, death takes the protagonist unawares. He fails to wake up from the seventh of the annual surgeries. As Roth concludes, "He was no more, freed from being, entering into nowhere without even knowing it. Just as he had feared from the start" (p. 182). Jerome Groopman has it right—this slim novel is enormously instructive about the yearnings of the human soul. It belongs with other resource books on living in the shadow of death derived from philosophy, psychology, anthropology, and the health professions.
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