‘AND A TIME TO DIE

Abstract

FigureHaving spent 30 years in oncology, I am humbled by this author's insight into how people experience death in American hospitals. Sharon Kaufman, PhD, Professor of Medical Anthropology in the Institute for Health & Aging at the University of California, San Francisco, conducted two years of on-site research watching how patients, their families, and medical professionals interact around serious illness and death. She interviewed patients, their families, physicians, nurses, and social workers, and offers a compelling look at how death is approached, delayed, avoided, and planned for in the American hospital system. In the author's words, “patients only want to breathe, to escape the place, to get better, or to die.” Her research is very much enriched by compelling stories of patients and families with whom she interacted. The tensions between them and their professional caregivers are sensitively portrayed, and in them, we come face to face with our memories of our own profound ambivalence about death and the part we play in its orchestration. The rhetoric we employ—the “good death,” death with dignity, quality of life, diminished suffering, patient's rights—sets the stage for our intention to provide compassionate care to those for whom we are responsible. Patients and families also want these things, but they have the disadvantage of not knowing the territory, their emotional ties to their loved ones, and their fear of the invasive procedures that may be inflicted upon the person they are trying to protect. Timing is critical to how and when death will occur and can be experienced as a tremendous burden to all of us involved in the drama of life in the hospital. Added to that burden are the constraints imposed by how medical care is paid for, the oversight that physicians experience in how they practice medicine, and the pressures nurses and social workers feel to care for the most vulnerable as we prepare for their exit from the institution, one way or another. Desperate Families Look to Us to Guide Them Professional ethics, those principles that guide our practice, often seem impossibly compromised as desperate families look to us to guide them through the myriad and endless choices with which they are faced. Families' personal ethics, how mom or dad wants to die, collide with the cultural and economic forces that govern how hospitals operate. In the words of one daughter describing the death of her 87-year-old mother who persisted in trying to pull out her feeding tube, “an attempt to remove my mother from the ventilator failed….the hospital came to feel like alien territory intent on maintaining my mother's vital signs at all costs…my mother became increasingly frantic… my sense of being trapped in a nightmare intensified.” “I thank the author for her courage and sensitivity toward patients, their families, and to us as their caregivers. This is a riveting account of how people end their lives and what we can and must do to ease their journey.” It is my belief that cancer care professionals know how to help patients avoid deaths like this. But versions of this kind of nightmare do still go on in cancer settings: How long to go on with chemotherapy, what procedures can we plan to avoid pressure from the insurance companies, when to even suggest a Phase I study, who gets discharged prematurely when there are no more beds, and a dizzying array of situations in which we feel out of control of events. Hospital Culture & Contradictions Part 1 of this book deals with the hospital culture and the following contradictions: • Patient autonomy is narrowly defined by reimbursement constraints, hospital rules, and standards of care. • Medical care is focused on normalizing organ systems so that patients can be “stabilized.” • Heroic medical procedures exist alongside of palliative care—thus the referral to social workers for “rehab or hospice,” a stunning contradiction. • Hospitals are not set up to provide the kind of care our patients say they want. Patients swing between hospitals and nursing homes, largely driven by what will be paid for where. In the words of Dr. Kaufman, “dying people are not wanted in medical institutions, and it shows.” SUPPORT Study The author informs us about the results of the SUPPORT study (Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment), in which it was determined that much of end-of-life care was characterized by unrelenting technology. Only 47% of physicians knew when their patients did not want CPR, in spite of the fact that 79% of patients had a DNR request somewhere in their medical chart, and that 50% of conscious patients experienced moderate to severe pain. In the subsequent follow-up intervention study, the results were ominous: Interventions designed to better inform doctors about patient preferences about the use of heroic measures, DNR orders, avoiding CPR, or the management of pain were largely unsuccessful. For the physicians, choice is further complicated by the fact that patients and families do not know what to want, thus increasing the burden on physicians. The presence of a living will made no difference about whether patients were resuscitated or not, highlighting the absence of national standards of care and consensus about end-of-life care. Conversations about ‘Code Status’ Conversations about “code status” are ubiquitous among medical professionals but delayed with patients or families in the face of desperate illness. This is somewhat different for terminally ill cancer patients, where physicians feel the pressure of convincing families not to allow a patient to be resuscitated.Reviewed by Joan Hermann, LSW, Director, Social Work Services, Fox Chase Cancer Center; OT Editorial Board MemberDr. Kaufman writes that she feels that this pressure to help patients understand that if the family does not speak up against CPR, it will happen, leads to significant family guilt that they have indeed chosen their loved one's death. Families would rather not be in the position of making life-and-death decisions, and all too often we ask them to, rather than giving a clear picture of what we recommend for their loved one. We are the experts, no matter how well informed patients and families are, and it is to us, the experts, that people come for guidance. The author makes the point repeatedly that death can be staved off, postponed, and avoided temporarily in any number of ways, and health care professionals get too caught up in allowing too much choice, in the interests of respecting autonomy. Complicating this is the impact of organ donation and the use of the mechanical ventilator so that death is divided into the physical phenomenon associated with it and brain activity. ‘Death-in-Life’ Ventilators allowed what the author calls “three varieties of death-in-life: the brain dead, the comatose, and the inhabitants of some other location in the gray zone of indistinction.” Another observation: “The last year in which one could die of ‘old age’ or from simply being ‘worn out’ was 1913.” Death is defined by the International Classification of Diseases (ICD) so that there must be a diagnosis to explain that death has occurred, rather than from being too old to continue living. Prior to the 1980s, people stayed in hospitals for long periods of time, waiting to die. But in 1983, the Medicare Diagnostic Related Groups (DRGs) became the law of the land and “lingering” was no longer allowed. Treatments governed how long care was paid for, and treatments were determined by “watching the numbers” or the results of blood chemistries to spell out organ function and the state of the patient's medical course. Conditions that are considered life threatening “by the numbers” are now treated until they no longer respond to those treatments. Then those conditions are deemed “fatal.” Death then is “decided” rather than “waited for.” In the author's words, there is no “empty” time in the hospital. There is no longer a “deathwatch”—the time is filled with procedures, chemistries, and endless discussions of what should happen next, either to stave off death one more time or to decide on what palliative measures to put into place to ward off suffering. Ever present in this situation is the need to “move the patient along.” All hospital caregiving staff know that the “economic priorities of managed care now control the movement of patients through the hospital as rapidly and cost efficiently as possible.” The people who don't know or don't understand this are the patients and their families, who are astounded that as sick as they are, we are asking them to make plans to leave the hospital. We occasionally see the darkest side of this when patients die in the ambulance transporting them out of the hospital. Two Common Pathways: Heroic Intervention & Revolving Door Dr. Kaufman identifies two common pathways: the heroic-intervention pathway, like mechanical ventilation, and the revolving-door pathway, in which the chronically ill swing between hospital, home, or extended-care facilities, because they cannot be cured. Even when patients express the wish to die, families are often highly ambivalent about this, some being totally unable to hold their loved one's life in their hands. So procedures go on until the family is finally exhausted enough to call it quits. “Waiting” continues until the patient's body finally gives out in spite of our efforts or the physician is unequivocally clear about what is going to happen and stops offering procedures to justify the patient's continued presence in the hospital. The revolving-door pathway is what families least understand. The author identifies many factors that contribute to this phenomenon: “the diffuse fears of sick people, the specific panic caused by insufficient breath, family's lack of knowledge about what to do…doctors who do not act as guides to the end of life.…Medicare and Medicaid reimbursement rules and nursing homes and hospital discharge routines.” The latter, Medicare and Medicaid reimbursement practices, in the author's view, is chiefly responsible for putting patients and families on this pathway and is the least understood reality for patients and their families. Dr. Kaufman offers several poignant examples of this travesty of care giving, and it will be well recognized by any health professional who has ever tried to orchestrate a humane death. What results is that dying is often not acknowledged until the very end, when someone stops the tests, treatments, or procedures that characterize “moving things along.” Code-status decisions are made far too late and hospitals are criticized for an inhumane death that families are in no way prepared for. Of course, all of this happens within the reality that long-term care “is more than fragmented, it is absurd.” Every health care professional knows that reimbursement policies dictate how and when dying will take place, but unfortunately, we seem stuck with this until we decide that our system of paying for medical care needs a radical overhaul. Waiting Chapter 5 is titled simply “Waiting,” and every health care professional reading this book will understand the scenarios. The author distinguishes between the waiting of the patient and family and the waiting of the hospital staff as being radically different. For the former, “waiting is distinguished by a feeling of anticipation mingled with hope and dread. The anticipation is born of incomplete understanding on a journey of uncertainty. Patients and families are outsiders in the system as they wait for doctors to arrive, tests to be done, nurses to bring medicine, for treatment to happen, for it to work or not, for visitors to arrive and to be discharged. For doctors and nurses, waiting is entirely routine. We wait for test results, consultations to happen, for the patient's condition to stabilize, for discharge decisions to be made, for families to make decisions about life sustaining care, in other words, for things to ‘move along.’” Vividly shown is the tension between families and staff, which often results in obstructive waiting, with each side seeing the other as the culprit in the hospital dance. Physician rhetoric, the author says, is one of the problems—doctors in their desire to be kind use words like rarely, unlikely, barelyalive, which to families mean maybe. Timing is critical in this scenario. When has enough waiting happened and when will family be able to make the switch from hope to waiting for death? What then follows are three fascinating cases of patients who refuse to give up, doctors who wanted one more procedure, and families who agonized about withdrawing treatment. Also discussed is the use of feeding tubes, especially in the frail elderly or those with dementia and the unbearable decision to allow withdrawal. The book also documents cases of patients who reject additional treatment and those situations in which it is decided to “treat the family” in order to make death acceptable. ‘Endless Choices, Unrelenting Technology’ We have all been there with endless choices and unrelenting technology and our professional need to provide the best care possible—the need to feel satisfied that we have provided the best care possible. How often do we really succeed to our satisfaction in the face of how such care will be paid for as an unwelcome intruder to our efforts? Chapter 7 addresses the removal of life support, the power physicians have in determining when that should happen and the ambivalence everyone feels depending on their personal views of what kind of life is worth living. The author says she observed in about equal numbers both families and physicians unable to let go, pushing for one more aggressive treatment, and on the other side, equal numbers intervening to stop trying for the impossible—as well as the third scenario, in which no one took the initiative to make any kind of decision. When patients were unable to speak for themselves, physicians always followed the lead of the family, even in instances when the doctor had had the “no heroics” conversation with the patient. How people define what constitutes life support is highly dependent on the patient's condition, attitudes about illness, and “quality of life,” and is less often guided by a clear notion of what the patient would want. Interestingly, there was little concrete evidence that religious faith entered much into the deliberations. The dilemma of a physician who tries to advocate for a patient in spite of a family's inability to let go is poignantly illustrated by one horrific patient death, one in which in all of its complexity the family could feel that “everything was done.” Then there is the patient who pleads with everyone he meets to be allowed to die, with his pleading continuing until he dies in spite of his care. And then, the hardest of all, the ambivalent patient who is terrified and cannot render a clear opinion until his body makes it for him. In Chapter 8, “Hidden Places: The Zone of Indistinction as a Way of Life” are those designed to sustain life, regardless of the life-support technology that is necessary to keep someone living. The impossible choices that families make are replaced by impossible conditions in which life continues regardless of its quality, until someone makes a decision to do otherwise. The consciousness of these patients is variable at best and in a fascinating turn-about, Medicare has no problem paying for this kind of care, since it is deemed cheaper than the acute care hospital. All of these patients have varying degrees of awareness about who they are and an inability to act in the world as free agents. This group consists of the elderly comatose, victims of traumatic accidents, often young people with degenerative neurological disorders, and people the author identifies as being in some sort of higher level of awareness but without functional abilities to exist on their own. Only about 25% of these patients are designated a No Code by their families. Among the nurses caring for the patients the predominant feeling is expressed this way by a nurse: “Leave these people alone. Let them live. They are not bothering anyone. Leave them here to live this way.” In contrast, physicians seem to have a totally different view, feeling there is little quality of life and that they could never make this kind of choice for a loved one. Almost half of the physicians interviewed in fact, considered these patients to be dead. Nurses, of course, must invest themselves in caregiving, so they could not survive doing their work if they felt like that. In the final chapter, Dr. Kaufman offers the following summary: Is the hospital capable of responding to change so that death is no longer considered a problem? Do we continue to offer people procedures and choices that postpone, delay, and avoid what is natural, the time for a life to end? Can medicine respond to the needs of the patient as a person and resist the efforts to defy illness and old age in the service of the overriding mission to relieve suffering? Does our future include a move into what she terms “regenerative medicine”—part cure, part prevention, and part experimental science so that the body, especially the old body, moves from a diseased entity into a site for improvement and restoration? What was once natural is now negotiable, and social and cultural forces take over and may replace what we consider to be moral, thus compromising the way we practice the art of medicine and caregiving of the most vulnerable among us. Has Nature Disappeared? Has nature disappeared and “been replaced by the right and the obligation to choose, by the specter of litigation, the desire for the pressure of time, the of and and by about Dr. this is the that needs to be by all of us to the of suffering. I cannot recommend this book highly enough as an look at how American hospitals the people end their “I cannot recommend this book highly enough as an look at how American hospitals the people end their I from my three of in are that I must and will to look at my world in a very Of course, the author's as rather than made it for her to life but I in of what she has This is a riveting account of how people end their lives and what as caring health care can and must do to ease their is the to how we and this book our personal and professional into in a way that is for us to move into in our desire to relieve suffering. This book has a to us, and I thank Dr. Kaufman for her courage and sensitivity toward patients, their families, and to us as their caregivers.