| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
| ||||||||||||||
BOOK REVIEW |
Department of Epidemiology & Biostatistics School of Medicine Case Western Reserve University Cleveland, OH 44106
And a Time to Die: How American Hospitals Shape the End of Life, by Sharon Kaufman. Scribner, New York, 2005, 440 pp., $18.95 (cloth).
Last Rights: Rescuing the End of Life from the Medical System, by Stephen P. Kiernan. St. Martin's Press, New York, 2006, 304 pp., $26.95 (paper).
These two books by Sharon Kaufman and Stephen Kiernan explore how the American medical system has handled a shift in the way people die, and how bureaucracies affect peoples' experiences with the end of life and made the "good death" so elusive.
Why Have "the Problem of Dying" and "a Good Death" Emerged As Issues?
Advances in medical technology and public health measures have afforded today's Americans much longer life spans than in the past. The average life expectancy at birth in 2004 reached 77.8 years, a near decade gain since 1950. The primary causes of death have shifted from acute infections to chronic illnesses such as heart disease, cancer, and stroke (CDC, 2004). Emergency response teams, portable defibrillators, and other advances in disease management have also kept people from dying suddenly. In their study of end-of-life trajectories, Lunney, Lynn, and Hogan (2002) discovered that only a small number of older Medicare decedents die suddenly. Instead, the other three dying trajectories—frailty, cancer, and organ system failure—are much more common.
Patients confronting the medical system in these more common, chronic dying trajectories are more likely to enter into what Kaufman calls "the gray zone at the threshold between life and death" (p. 1). And they can spend much time suffering there. Kaufman contends that death has been brought "into life in a manner impossible to achieve before the recent era, and life and death have become entangled to the point that they are now indistinguishable" (p. 62). She explains that "clinical expertise, biomedical technologies, and hospital routines can sustain essential aspects of biological existence even when signs of a unique, valuable individual's life are absent or questionable" (p. 62). However, she points out that it is not just these advances and hospital routines that keep us hovering in the gray zone, but the American societal emphasis on individual rights. The Institute of Medicine (IOM) has also recognized that besides "an actively interventionist medical profession, a deeply ingrained public philosophy of individualism, and a general American unwillingness to accept limits—including aging and death" influence end-of-life care and contribute to the "problem of dying" (1997, p. 47).
So it happens that "Death today is medically and politically malleable and open to end-less negotiation," observes Kaufman (p. 3). The Grim Reaper eventually gets what he wants, however, as people now experience slow incremental dying. This "presents many opportunities for people to control the shape of their final weeks, days, and hours" says Kiernan (p. 183). However, these new opportunities are often not realized and many problems arise in their stead.
"We are a nation that desperately needs stories—perhaps even myths—about dying to provide some guides to appropriate roles and worthy behavior," says Joanne Lynn (1997, p. xvii). That is exactly what these books provide. In her ethnographic work, Kaufman (2005) weaves her stories in with results and observations from scientific publications and historical perspectives, creating a telling presentation of the problem of dying in American hospitals. Kiernan begins his book by describing the shift in dying that has occurred in this country. He then illustrates "gradual dying" through stories from several perspectives—physicians, families, and patients—adding even his own personal experiences, in order to help people understand how dying happens today.
What Is "a Good Death"?
According to the IOM, "a decent or good death is one that is: free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards" (p. 24). In a review article focusing on the concept of a good death, Karen Kehl (2006) points out that even this IOM definition, the most widely cited, is confusing:
"it gives general direction, but is rather vague. After reading this definition, it would be hard for a clinician to know specifically what to assess and how to structure care to achieve a good death, beyond relieving or preventing distress or suffering, following patient and family wishes, and meeting various standards." (p. 277)
John Anthony Tercier (2005) in his book about the contemporary deathbed suggests that there are two overarching paradigms for dying in contemporary Western culture: "the good death" or "death-with-dignity", and "the bad death" or "the high-tech death." "The hi-tech death is condemned for favouring technique over compassion, hospital over home and the patriarchal power of the physician over the feminine nurturing of the family" (p. 10–11). Marilyn Webb (1997) observes that "Medical science has become so successful that what people fear most is not death itself but a slow death—locked behind hospital doors—that prolongs life but makes it a living hell" (p. 31).
In public discourse, a good death often refers to "one that we can control, making decisions about how much intervention we want, how much pain relief, whether it's in the home or the hospital, who will be by our sides" (Henig, 2005). While researching his book, Kiernan observed that as more and more Americans experience their death approaching slowly, they desire to be in control. Similarly, Kaufman writes that there is a "new need and desire to bring about a particular conception of the ‘good death,’ that is, to plan death proactively, to express and then experience what one wants regarding it, and above all, to ‘control’ it" (p. 94). Kehl (2006) discovered in her review of studies of "the good death" that "Being in control was clearly the most important and most common attribute" (p. 281). She identified four attributes of this multi-faceted concept: (a) choices/wishes being honored including communication of wishes; (b) clear decision making; (c) options available for suicide or euthanasia; and (d) control over the death event, including location, timing, and presence or absence of others. Kehl also found these other major attributes of a good death: being comfortable; sense of closure; affirmation/value of dying person recognized; trust in care providers; recognition of impending death; beliefs and values honored; burden minimized; relationships optimized; appropriateness of death; leaving a legacy; and family care (p. 281).
There are scales available to measure the concept. The Quality of Dying and Death Instrument (Patrick et al., 2003), the Concept of a Good Death Measure (Schwartz et al., 2003), and other scales have been developed to capture the attributes of a good death (Steinhauser, Christakis et al., 2000). However, studying the concept of a good death presents many difficulties for researchers. Just some of these, identified by Patrick et al. (2003) are: difficulty in interviewing patients at the end of life; relying on already burdened and stressed surrogates who have varying opinions, and biases from sample selection). In the pursuit of understanding this important topic, they recommend that "Individualized assessments, item banking, and dynamic interviewing strategies" be developed in order "to match the personal, specific nature of the quality of dying and death" (2003, p. 414)
Indeed, Steinhauser, Clipp, et al., (2000) found that "There is no single formula for a good death" (p. 830). It seems that this is the conclusion of many in the field. In an interview about training new physicians in end-of-life care, Dr. Pippa Hall says "There are people who die fighting. They sort of live their life fighting, and you admire them for it. But for some people, they don't want to die that way" (Tam, 2005, p. E1). As Kiernan notes, "Health-care professionals who have witnessed many deaths say that people's manner of dying often mirrors their lives" (p. 60). Similarly, Steinhauser, Clipp, et al, (2000) reported that "our data suggest that the quality of dying is related to acknowledgement of that lifetime context" (p. 830). And finally, in her review, Kehl (2006) observed that "The most obvious and notable finding of this study was that the concept of a good death is highly individual and dynamic" (p. 280).
Why is "the Good Death" Elusive?
Many people taught Kiernan that "They did not fear death, but they feared dying badly" (p. 275). What are the barriers to experiencing the good death? Kaufman and Kiernan can name several.
During her two years conducting her field research, Kaufman discovered that "One of the hospital's primary tasks within [the larger health care system] is to move things along" (p. 96). She noticed that very ill or old patients were commonly placed on two common pathways that operate within "the strictures" of managed care: the heroic intervention pathway; and the revolving door pathway (p. 97). On the heroic intervention pathway, characterized by aggressive life-sustaining medical procedures, seriously ill patients can be held in "the zone of indistinction" until death is "facilitated," occurring after the medical team and family decide it is time to withdraw life-sustaining treatment (p. 99). Physicians and hospital staff have developed routine ways of "moving things along" when they believe the patient should not continue on heroic intervention pathway. But choosing death now or death later are just "simply impossible" decisions for patients and families in Kaufman's view.
The revolving door pathway is less recognized but just as, if not more, common. It involves repeated hospitalizations for a terminal chronic illness. According to Kaufman, this pathway "usually first moves toward aggressive treatment to sustain a precarious condition – even though the patient is in decline and is approaching the end of life" (p. 100). She says that:
"Many factors commingle to foster the revolving door—the diffuse fears of sick people, the specific panic caused by insufficient breath, families' lack of knowledge about what to do for their ailing relatives, doctors who do not act as guides to the end of life because they cannot prognosticate well and do not want to discuss death, Medicare and Medicaid reimbursement rules, and nursing home and hospital discharge routines. But Medicare and Medicaid payment policies bear the brunt of responsibility for shaping this pathway in the first place and for placing patients on it" (p. 132).
Significant changes in Medicare reimbursement policies took place in 1983, the year that Medicare Diagnostic Related Groups became law. The hospital would not permit patients to stay in the hospital unless they were being actively treated because as Kaufman was told, "Dying is not billable"(Kaufman, p. 91, 2005).
It is easy to get caught up in either of these pathways. Robin Marantz Henig (2005), the author of a New York Times article about the good death, wonders "why do we often feel so blindsided by death, even the death of an elderly person suffering from a long-term condition?" Kaufman writes that "the problem of dying" is emerging "because, while many claim to want that elusive ‘good’ death for themselves and their loved ones, they also want—equally or more strongly—that their loved ones not die" (p. 4). Marantz Henig (2005) cites James Hallenbeck, who observes in his book Palliative Care Perspectives that many people have "trouble breaking the cycle" in the revolving door pathway. People "say they despise the miserable roller-coaster ride ... yet they often act ‘as if they were addicted to it.’" Kaufman, herself, despite all this research and gained knowledge of the process, admits that she'd be equally caught up in the pathways if something happened to her or her loved ones.
Unfortunately, the realization of the pathway's end comes far too late to allow for alternative pathways such as hospice. Instead, according to Kaufman, choices are constrained, and "dying is organized around the insidious power of bureaucratic imperatives to bring death into life in ever-expanding ways" (p. 326). Tercier (2005) discusses how "the Revivalist movement ... seeks to counter the invisibility of death and what it perceives as modern medicine's abuse of the dying patient. ... Revivalism seeks not to cure, but to palliate—that is control—pain, anxiety, fear and suffering so as to allow the patient to die ‘in character.’" (p. 16)
Why else is it easy to get caught up in Kaufman's pathways? Kiernan describes many barriers to a good death in his book. He points out, for instance, that medical education and physician training haven't caught up with the changes in the way Americans are dying and don't provide for the new needs associated with gradual dying. Medical schools generally do not require their students to rotate through palliative care or a hospice program, but instead offer these as electives. "And young physicians still learn largely by observing more senior members of their field. ("‘See one, do one, teach one’ remains a guiding maxim at medical schools"; Groopman, 2007, p. 41). This is what is referred to as "the hidden curriculum" which "has a powerful influence in shaping medical students' attitudes and behaviors toward patient care" (Haidet et al., 2005, p. 44).
Marilyn Webb (1997) asserts that "Medical training must change" (p. 401). Tulsky, Chesney, and Lo (1996) "recommend that communication about end-of-life treatment decisions be treated as a medical skill to be taught with the same rigor as other clinical procedures" (p. 1285). But Kiernan remarks that "Remaking medical-school and residency programs to accommodate gradual dying will not happen easily" (p. 109). He cites the IOM's (1997) report, Approaching Death: Improving Care at the End of Life, as saying that "Departments have turf to protect, individual faculty have habits that are entrenched, and academic administrators bear scars from previous attempts at major changes" (p. 109). Kiernan also notes that competition for resources and the appeal to students of high-profile disciplines such as genetic medicine and surgery are other barriers to changing the curriculum.
In addition, Kiernan says that one of the largest obstacles in improving care at the end of life is attitude. "Physicians' own apprehension about death and their professional emphasis on science combine to powerful effect" (p. 115). Kiernan describes how medical training affects physicians:
"From the beginning of their training to the decades of their long careers, medical professionals are not taught to treat dying. Instead, they are hardened to it. The laudable scientific emphasis of their profession focuses them on treatments and cures at the expense of compassionate care. And the emotional isolation they experience, despite encountering intense human difficulties every day, forces them to seek numbness and withdrawal—when that is the opposite of what patients and families need and desire and deserve" (p. 120).
Contrary to our desire to die at home, many Americans die in a hospital. However, many people aren't familiar with the dying process and the accompanying physical complications, and the emotional stress and pain. Webb (1997) points out that "We have few traditions to guide us through this unprecedented, and greatly protracted, dying process" (p. 32). Doctors should be trained to provide patients and families with some foreknowledge about the process of dying. As families are increasingly a part of care due to changing reimbursement and discharge policies, this is especially important. Kiernan emphasizes that knowing what to expect can allow for an easing of the process into a gentle passing. Shock and distress set aside, patients and families can comfortably share the moments before death. "End-of-life care is less about science than about humanity, the human connections among patient and physician and family" (pp. 115–16). Physicians should be trained to have the power to make the important time not the moment of death, but the time that leads up to it, a lesson that Kiernan learned from the fall season and calls "the lesson of the leaves" (p. 274).
Concluding Thoughts
Hospitals can stave off the Grim Reaper until the "appropriate time" for death. However, Kaufman (2005) notes that while "Struggling to find ways to either stave off death or arrange for ‘good deaths,’ hospital staff, together with the powerful technologies that are part of hospitals today, can also allow a third possibility—a prolonged hovering at the threshold between life and death" (p. 4). These choices confronting patients, families, and healthcare providers along the pathways will most likely become more difficult to make. William Colby (2006) warns "That line, elusive today, will likely grow harder to find as technology continues its march forward" (p. 107). The IOM (1997) recognized that there is a temptation to continue to ignore the limits of medical technology. However, the path to a good death requires that each of us finalize negotiations and face out fates.
Webb (1997) acknowledges that even though "Modern medicine may have made dying harder ... it has also given us the gift of time. ... if we can take advantage of it, it has given us something unique in history: the time to tie up loose ends and orchestrate a death that is good" (p. 407). Emanuel and Emanuel (1998) outline several initiatives, in research, training, system design, and reimbursement areas, that could help in "making [a good death] the standard of care" (p. sii27). The framework they provide for understanding and implementing practices for a good death can help us understand how to empower all stakeholders with the right tools to fix the problem of dying.
These two books provide an inside look into how American hospitals shape dying and the underlying reasons why the good death can be so elusive. This is a pertinent topic for everyone, as most of us will likely be negotiating to die in the spirit of how we lived our lives. Prepare yourselves with this foreknowledge before entering an American hospital.
References
| ||||||||||||||
| HOME | ARCHIVE | SEARCH | TABLE OF CONTENTS |
|---|
