Values at the End of Life

The Logic of Palliative Care

Roi Livne

• Editorial: Harvard University Press
• Año: 2019
• ISBN:
  9780674239876
• Categoría: Sciences sociales
• Categoría: Mort en sociologie

This insightful study examines the deeply personal and heart-wrenching tensions among financial considerations, emotional attachments, and moral arguments that motivate end-of-life decisions. America's health care system was built on the principle that life should be prolonged whenever possible, regardless of the costs. This commitment has often meant that patients spend their last days suffering from heroic interventions that extend their life by only weeks or months. Increasingly, this approach to end-of-life care is coming under scrutiny, from a moral as well as a financial perspective. Sociologist Roi Livne documents the rise and effectiveness of hospice and palliative care, and growing acceptance of the idea that a life consumed by suffering may not be worth living. Values at the End of Life combines an in-depth historical analysis with an extensive study conducted in three hospitals, where Livne observed terminally ill patients, their families, and caregivers negotiating treatment. Livne describes the ambivalent, conflicted moments when people articulate and act on their moral intuitions about dying. Interviews with medical staff allowed him to isolate the strategies clinicians use to help families understand their options. As Livne discovered, clinicians are advancing the idea that invasive, expensive hospital procedures often compound a patient's suffering. Affluent, educated families were more readily persuaded by this moral calculus than those of less means.Once defiant of death—or even in denial—many American families and professionals in the health care system are beginning to embrace the notion that less treatment in the end may be better treatment.

CHAPTER 1

The Palliative Care Gaze

At the end of the spectrum is Dr. Pashutin. He has the reputation of a guy who would dialyze a corpse.

—A palliative care physician

I WAS WALKING WITH SCOTT (a palliative care physician) to see a patient, when he spotted in the adjacent room a pale, elderly woman breathing heavily and appearing minimally conscious. Nearly bumping into us, the woman’s bedside nurse asked if Scott had come to see her, and Scott responded, ‘No, but it looks like I will be called soon.’ ‘It would make sense,’ the nurse agreed, ‘but they’re discharging her to her nursing facility today.’

About an hour later, sitting at the nurse station, I noticed Scott was splitting his attention between writing a note on his own patient and following two heavy men wearing emergency medical technician (EMT) badges, who had come with an ambulance to drive the woman to the nursing facility. One of them asked the nurse if the patient had a Physician Order for Life-Sustaining Treatment (POLST) form—a bright pink paper that instructs clinicians on whether or not to resuscitate, intubate,^a provide artificial nutrition, and rehospitalize a patient if her or his condition declines. Scott interrupted him assertively and said that asking whether the form existed was not enough. ‘You should make them do a POLST!’ he said emphatically. The EMT stepped closer to us and said Scott was completely right, but Scott was still unsatisfied—he insisted that the EMT should demand that everybody be clear about what would happen in any situation that developed. As they continued to talk, the EMT’s colleague waved a white piece of paper at him, saying, ‘It’s okay, this is a legal form.’ The EMTs moved the woman to a stretcher and disappeared down the elevator on their way to the ambulance parking.

Some fifteen minutes later, the bedside nurse walked into the station and informed everybody that the ambulance driver called and said they thought the patient was decompensating. ‘They’re bringing her back to the ER.’ ‘But they just left!’ said another nurse. Scott’s loud guffaw could probably be heard in other units, too. ‘What did I just tell you?’ he asked. ‘I always say, don’t say what you’re not going to do if X happens; say what you are going to do.’

This chapter analyzes how Scott’s way of looking at patients—his medical gaze—developed historically and how this gaze affects clinical practice in U.S. hospitals today.¹ Peeking in at an open door of a room he was not called to visit—and without conducting a physical examination, reading the woman’s medical chart, or knowing anything about her diagnosis—Scott recognized that she was nearing death. A cardiologist once told me that in 95 percent of the cases, she could recognize cardiac problems just by looking at her patients and listening to their stories; the more elaborate laboratory tests and imaging she used only to formalize her intuitions and fine-tune the diagnosis. Scott exhibited a similar ability within his own expertise when he identified a patient who was at the end of her life just by looking at her. Had he been called to see the patient, he could have also supported what he saw with clinical tests.

But Scott’s expertise went beyond clinical diagnosis—it also involved organizational astuteness. Knowing the U.S. health care system, he correctly predicted that without unequivocal instructions stating otherwise, the ambulance staff would turn back to the hospital’s emergency room (ER) if the woman’s condition declined. What would happen next was harder to predict, and Scott did not want to take the chance. The woman could be assigned to ER physicians who had met her in past hospitalizations and knew her medical problems, but she could also be treated by a team who would see her for the first time. Like Scott, this ER team would not know the woman’s medical history, but that team would most likely see a completely different patient than the one Scott saw: a patient in acute medical distress, who required emergency measures to stabilize her condition and save her life.

“If all you have is a hammer,” a palliative care nurse who worked with Scott once told me, “everything looks like a nail.” Seeing a sick person, nephrologists would tend to think of their medical problems in terms of kidney function, cardiologists would tend to attribute them to the heart, and hepatologists would focus on the liver. From the perspective of emergency medicine specialists working in the ER, a woman whose organs are decompensating needs emergency interventions. They would resuscitate her, intubate her, and connect her to the respirator. They would use vasopressor drugs to sustain her blood pressure. By the time they examined her chart to learn about her preexisting medical problems—which could involve terminal cancer or other incurable and irreversible diseases—the woman would already be connected to life-sustaining machines.

Holding a different “hammer,” Scott saw another “nail.” Having trained and worked daily as a palliative care specialist, he saw an elderly woman who was at the end of life and needed a specific set of clinical and organizational interventions that would be appropriate to this condition. She needed a POLST, a form that would set clear and legally binding boundaries on the treatments health providers would give her. At the end of her life, medical discussions should focus on when to phase out and how to moderate life-sustaining and life-prolonging interventions. I characterize this medical gaze that takes the end of life as its main object of interest as an economizing gaze because it represents a regime of valuation, which questions the moral and clinical value of medical interventions. The economizing gaze delimits and checks the abundance of medical interventions that medicine can offer. Palliative care clinicians, the economizing gaze’s main carriers in hospitals, have gradually anchored themselves in the U.S. medical profession, in the organizational environments of a record number of hospitals, and in the intuitive moral sense of numerous clinicians, policymakers, and laypeople.

This chapter analyzes how four qualities of this gaze developed. First, the economizing gaze has gradually become formal, professional, and institutional. This means that clinicians today can familiarize themselves with the economizing gaze through formal education and training; advocates of the gaze can rely on established organizations, rules, and laws; and scholars and practitioners can have careers in the area that the medical profession recognizes and rewards. It also means that a growing number of clinicians accept economized dying as morally virtuous; economization has become the gold standard for treating patients whom physicians identify as approaching the end of life. A second quality of the economizing gaze is its tendency to expand. At first the economizing gaze restricted itself to dying people, like the woman Scott noticed. Later, it reached toward broader populations to include people suffering from diseases that might kill them in the non-immediate future, and healthy people who want to prepare for the inevitable. Third, the economizing gaze has influenced the general public. In an era of commercial health care, in which patients are turned into consumers, advocates of the economizing gaze have tried to create a popular demand for economization. Fourth, for some clinicians, the economized gaze has become an embodied quality. Training as a palliative care physician made Scott capable of seeing that a patient was at the end of life. Palliative care is therefore not just a set of professional ideas and moral beliefs, but a concrete capacity to look at patients, notice certain qualities and properties that they have, and treat them accordingly.

In this chapter’s first section, I will trace the origins of the economizing gaze in hospices, which were the first comprehensive medical approach to define limiting life-prolonging care as virtuous. I analyze the development of U.S. hospices, which emerged as a grassroots movement from the margins of U.S. medicine and became institutionalized (not without resistance) as a medical specialty during the 1970s and 1980s. The second section examines the expansion of the field’s boundaries during the 1990s and the 2000s, when several philanthropic funders invested in developing the palliative care expertise. They extended the economizing gaze’s breadth from hospices into hospitals; they trained clinicians like Scott and facilitated hospital environments that would accept them. The third section outlines the efforts of palliative care advocates to popularize their approach and communicate economized dying to the general public. The fourth section draws on ethnographic and interview data to examine how palliative care clinicians internalize the economizing gaze, make it part of their routine practice, and train other clinicians in applying it.

Institutionalizing: The Ascent of U.S. Hospices

Origins of the Field

In 1974, Hospice, Inc., in New Haven, Connecticut, formally admitted the first U.S. hospice patient. Less than forty years later, U.S. hospices were serving an estimated 1.65 million people, and 44.6 percent of all deaths in the country happened under the care of a hospice program.² This growth was no less than a revolution: hospice has become the main designated medical institution that manages dying in the United States. The revolution is particularly significant because unlike other medical disciplines that grew during the period (such as intensive care and oncology), hospices did not introduce new technologies or treatments. Hospice is a medical philosophy, not a treatment per se. Although hospice care has not achieved complete dominance in U.S. health care, it has certainly gained much ground remarkably fast.

The origins of hospice can be traced back to “homes for the dying poor,” which were mostly founded and run by religious organizations in the nineteenth and twentieth century. Care in these organizations included nursing with “little medical involvement” on the part of physicians.³ Cicely Saunders—universally recognized as the most prominent early pioneer of modern hospice care—began her career at two of these organizations, Saint Luke’s Hospital (opened 1893) and Saint Joseph’s Hospital (1905) in London. Saunders trained as a physician in 1951–1958, when, as she wrote, “many of the drugs, whose use we now take for granted, were introduced,” making doctors assume an ever-growing agency in treating sick bodies and prolonging people’s lives.⁴ This was the period that the historians of medicine Harvey McGehee and James Bordley called the “period of explosive growth,” in which antibiotics, early chemotherapies, polio vaccines, antipsychotic drugs, and later pacemakers, open-heart surgery, cardiac catheterization, and hemodialysis became part of the medical toolkit.⁵ Upon her graduation from medical school, Saunders began a decade’s work at Saint Joseph’s, a 150-bed hospital that reserved forty to fifty beds for “patients with terminal malignant disease.”⁶ In this position, she became an active, articulate advocate for dying patients, arguing that their treatment required a distinctive approach to care that was at odds with the direction modern medicine was taking. Medicine’s goal was to postpone death as long as possible; when this goal became impossible, doctors saw no reason to continue treatment.⁷ “It appears to me,” Saunders wrote in 1958, “that many patients feel deserted by their doctors at the end.”⁸ For one thing, Saunders wanted to guarantee that doctors remained responsible for their patients, even when hope for recovery was lost. For another, she wanted these doctors to provide medical care that suited dying patients’ unique needs.

While she was still working at Saint Joseph’s, Saunders began preparing her preeminent life project: the foundation of Saint Christopher’s Hospice, a free-standing institution located in London that was fully dedicated to the care of the dying. Already a known hospice proponent, Saunders traveled to the United States in 1963, where she divided her time between soliciting donations for Saint Christopher’s, lecturing at multiple universities, visiting eighteen medical institutions, and meeting with academic, religious, and medical figures who were interested in the hospice idea. Saunders’s charismatic appearances drew hundreds of clinicians and academics to her lectures. Some of them continued to correspond with her, visited Saint Christopher’s when it opened, and invited her for subsequent visits in 1965 and 1966.

These lectures outlined the principles of hospice care as Saunders practiced it. First, Saunders defined hospice as focusing on the patient as a person, and she criticized medicine’s impersonal and technical character, best epitomized in the image of the “specialist without heart” who mechanically treats body parts, not people.⁹ Second, Saunders challenged medicine’s tendency “to go on pressing for acute, active treatment at a stage when a patient has gone too far and should not be made to return.”¹⁰ This, she argued, “is not good medicine. There is a difference between prolonging living and what can really only be called prolonging dying.”¹¹ Instead, Saunders advocated for accepting death as integral to life. Death should be thought of as “life’s fulfillment,” she said, an event that “helps us find ...

Índice

• Cover
• Title Page
• Copyright
• Dedication
• Epigraph
• Contents
• Abbreviations
• Introduction: The New Economy of Dying
• 1. The Palliative Care Gaze
• 2. Financial Economization
• 3. What the Dying Want
• 4. Making the Dying Subject
• 5. Goat Taming
• Conclusion: Toward a Sociology of Economization
• Methodology
• Notes
• References
• Acknowledgments
• Index