Speaking for the Dying tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result.
Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.
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Holding Life and Death in Their Hands
It is 6 A.M. The critical care resident checks on one of his patients before morning rounds and encounters ten angry family members encircling the unresponsive patient's bed, livid that he had been intubated (had a breathing tube inserted into his airway) and attached to a ventilator in the middle of the night. The patient, a seventy-six-year-old white man and former purchasing agent, had been admitted to the hospital for a relatively minor stent (drainage tube) procedure and to explore his eligibility for a liver transplant. He had previously designated his wife power of attorney for health care and documented that he did not want to be resuscitated or intubated.
The previous day, tests had revealed that the patient had liver cancer and would probably not be eligible for a transplant. Late that night the patient experienced breathing difficulties, and the medical team asked for his consent to be intubated and placed on a ventilator. At 3:25 A.M. the patient, alone in his room in the intensive care unit (ICU), had consented.
Two hours after the hostile encounter in the patient's room, the critical care team — an attending physician, fellow, and two residents — arrived for morning rounds. As he examined the patient, the attending physician spoke to the assembled family.
CRITICAL CARE ATTENDING: I'm going to look at his heart and lungs, and then I know you have concerns about the vent [ventilator].
WIFE: Pull the plug.
DAUGHTER-IN-LAW: This is not what he would have wanted.
CRITICAL CARE ATTENDING: Would he feel differently if he was able to potentially get a transplant?
CRITICAL CARE ATTENDING: If the cancer is confined to his liver, they wouldn't rule him out as a transplant candidate. It's a long shot, I'll be honest. But they haven't ruled him out yet.
WIFE: I thought they found fluid in his abdomen and so he can't get a transplant.
CRITICAL CARE ATTENDING: They haven't told us that he's definitely not a candidate.
WIFE: Just pull the damn plug!
CRITICAL CARE ATTENDING: See, we're in a bit of a bind. He told the nurses last night that he wanted to be intubated, and in effect retracted his living will. But sometimes when people are in distress they'll make decisions differently. You don't think this is what he wanted?
WIFE, DAUGHTER-IN-LAW, DAUGHTER, AND TWO SONS: [In unison] No.
DAUGHTER-IN-LAW: He talked about this at length with me in the last three months. He told me in detail what he wanted. It's not this.
WIFE: I think he was just frightened.
DAUGHTER-IN-LAW: Yes, I think he was scared. He thought he was just coming here for stents for his liver. Now he's on pressors and Levo [life-supportive medications].
CRITICAL CARE ATTENDING: We'll have to consult with our ethics committee to make sure that we're doing the right thing — that we're following his wishes.
DAUGHTER-IN-LAW: Yes, we understand.
CRITICAL CARE ATTENDING: We'll talk to Ethics and the nurses who were here as soon as possible to get their thoughts. Unfortunately, during the night, things sometimes are complicated because the primary team and the family aren't around.
The critical care team then consulted the chair of the hospital ethics committee to determine whether the patient's wife was permitted to reverse the patient's decision made just hours earlier. The physicians and nurses who had cared for the patient overnight and had secured his consent to be intubated were consulted as well. Physicians also reviewed instructions in the patient's power-of-attorney document. At 10:30 A.M. the critical care team removed life support and initiated comfort measures. The patient died around midnight.
It is unusual to hear the expression "pull the plug" in a hospital, let alone observe loved ones demand so quickly and decisively that physicians do so. More often families beg physicians to do everything possible, even when all hope is gone. The family of a second ICU patient shows the lengths to which loved ones may go to ensure that the plug remains securely in place. The immediate and unequivocal insistence of the first family to remove life support is matched by the unrelenting and fierce resistance to doing so by this second family. And the justifications for their decision look entirely different from those articulated by members of the first family, who stood in the patient's shoes and reprised his instructions and conversations.
The second patient is a fifty-five-year-old Middle Eastern man from a Christian denomination who immigrated to the United States in his late teens. He works in real estate. While doing pushups at home, he collapsed and had a seizure. He was taken to a small neighborhood hospital, which found that an aneurysm (a weak bulging in the wall of an artery that supplies blood to the brain) had ruptured. Initially talking and moving, the patient suffered another seizure and lost consciousness. He was airlifted to a second hospital, which administered life support and other interventions, but an exam suggested possible brain death. The patient's family transferred him to a third hospital, seeking a second opinion and a lifesaving intervention. Arriving at 1 A.M., the neurosurgeon on call explained to family members that an intervention was not appropriate and that another brain-death exam would be administered in the morning. The next morning the senior neurosurgeon on the case explained to the patient's family that the results were consistent with brain death.
NEUROSURGERY ATTENDING PHYSICIAN: The doctors have done an exam and I have reviewed all the scans. His brain is dead. His heart is only beating because we are giving it medication. He cannot think, cannot talk, cannot see, cannot hear.
SISTER: Give it more time to see if it comes back.
NEUROSURGERY ATTENDING PHYSICIAN: It cannot come back. It is destroyed. There is no blood going into the brain. ... If there was a one in a million chance, I would do something. ... Twenty to fifty percent of people with aneurysms do not survive. I do aneurysms, hemorrhages, brain trauma. This is what I do. If there is anything I could do, I would do it. If there was a one in a billion chance, I would do something.
WIFE: I believe in miracles.
NEUROSURGERY ATTENDING PHYSICIAN: I believe in miracles too. But I deal in facts. His brain is completely dead.
WIFE: They said something about a nuclear flow study [a scan that measures the amount of blood flow in the brain].
NEUROSURGERY ATTENDING PHYSICIAN: If you want that, we can do that.
WIFE: If there is even minimal flow, there is still hope. I was a doctor for four years. I know that things can happen. You don't always know what will happen.
About a half hour after the meeting ended, a senior neurologist arrived to perform a different kind of brain-death exam in the presence of the family. As he performed each step, he told the witnesses what he was doing. He shined a flashlight in the patient's eye and explained that he didn't see any reaction to light. He asked for permission to turn the patient's head to see if his eyes move. He explained that they didn't. He said that he will pinch the patient's fingers to see if he responds to pain. He noted that the patient didn't. He explained that he will put some cold water in the patient's ear to see if his eyes move. The neurologist inserted the water and said that it can take as long as a minute. Everyone in the room was riveted, staring at the patient's eyes, but they don't move. The patient's mother began shaking her head no. The neurologist put cold water in the other ear, again with no response. He then sat down beside the patient's wife and explained that, once again, the exam indicates brain death.
As they await the results from the nuclear flow study, fifteen family members begin filing in and out of the patient's room. Many are in tears. Others are screaming at the patient to wake up and commanding, "Don't do this to us!" As the hours tick away, visitors continue to implore the patient to wake up and open his eyes. "C'mon, it's time to wake up!"
The results from the flow study finally come back. The critical care attending physician escorts the family to a conference room. He hands a copy of the report to the patient's sister, who passes it to her brother and then to the patient's wife. They each slowly read the report. The physician explains that the report is absolutely clear; you can see it for yourself. "The scan shows that there is no flow to the brain. It is unequivocal. This confirms what we have known all day from the various tests that we have done — that he is brain-dead. Brain dead means that we can no longer treat him." Family members begin to protest that they need more time, and the patient's brother explains that they believe everything the physician said, but they need to be sure. They need to know that they have done everything that they can for him. As the resistance continues, the neurosurgery attending enters the room and declares, "I have just reviewed the last set of scans. The brain is entirely dead and the blood vessels in the brain are all empty." As the family files out of the room, the critical care attending tries negotiating with the patient's wife: the team will continue to treat the patient, but there will be no escalation of treatment, including resuscitating the patient if his heart should stop. The wife agrees.
The next morning the patient's sister arrives to rescind the do-not-resuscitate agreement, request that physicians give the patient Ambien (a sleeping pill touted on the Internet to reverse brain damage), ask for the name of the hospital's lawyer, and explain that the family hopes to transfer the patient to another facility and a better neurosurgeon. The nurse manager of the ICU responds that he will arrange a family meeting.
SISTER: We did that yesterday and we weren't happy with it.
NURSE: The patient is brain-dead. That means he is dead. Because he is dead. We cannot in good conscience send a dead patient to another facility. He is dead. He has passed. There is no blood flow to the brain.
AUNT: We don't believe it.
SISTER: People come back.
NURSE: But he has no blood flow to the brain.
SISTER: We know of another situation exactly. No blood flow and the guy comes back.
Some family members tell the hospital chaplain that the patient's fate is in God's hands and that they wish to give God every opportunity to restore the patient to health. God will decide. Others continue to argue with various members of the health care team that they do not believe the diagnosis. They cite anecdotal stories of individuals written off as brain-dead who are now alive and fully functional. Their goal is to keep the patient alive while they locate another specialist or institution that can perform a lifesaving intervention, a miracle. They will not give up until they find someone — whether at the Mayo Clinic or in London — able to do the intervention of which physicians in this hospital are incapable. They bring a lawyer to the hospital to ensure that physicians do not remove the patient's life support before they have an opportunity to transfer the patient elsewhere. Dubious that the family can arrange a transfer, the medical team nonetheless agrees to give them time to try to do so, although nurses and other physicians privately complain to one another about their discomfort and moral distress in treating a dead patient.
The next day, to the amazement of the health care team, an outside neurosurgeon agrees to treat the patient, and a local facility agrees to a transfer. (Just hours earlier an ICU nurse had confidently declared to his colleagues that, if any facility agreed to take a dead patient, he would quit his job.) ICU doctors prepare the brain-dead patient, his organs rapidly failing, for the risky ambulance ride to the new facility. A few days later, a death notice for the patient appears in the local newspaper.
Many of you probably cannot imagine yourself standing in the shoes of a member of either of these two families — deciding as they decided, as quickly or resolutely, or for the reasons they expressed. Some of you may not even realize how very likely it is that someday you too will stand at the bedside of a loved one facing wrenching life-and-death decisions on his or her behalf. And perhaps others of you are horrified to think that what happened to one or both of these patients could happen to you.
You are in good company. This book shares the very different stories of roughly two hundred other intensive care unit patients and how their families and friends negotiated medical decisions on their behalf. Like the first patient, many had preexisting medical problems, some of very long standing. Some patients were in the ICU for an elective procedure or second opinion; a few flew across the country when local physicians offered little hope. Others experienced complications — infections, respiratory problems, cardiac arrests, strokes — from unrelated medical procedures performed elsewhere in this or another hospital. And, like the second patient, for many the symptoms came out of the blue. They were at home, at work, in a public place, or engaged in sports when they collapsed, suffered a seizure or the worst headache of their life, or exhibited slurred speech, weakness on one side, or confusion. And others were transported to the ICU after a fall, accident, or assault.
The unfortunate patients in these stories are current or former doctors, nurses, lawyers, teachers, bus drivers, farmers, bookkeepers, construction workers, factory workers, business owners, musicians, performers, security guards, architects, salespersons, homemakers, honor students, and likely drug dealers. They are celebrities and street people. They are young and old, male, female, and transgendered, rich and poor, gay and straight, someone's parent and another's child. They are black and white, Hispanic and Middle Eastern, East and South Asian, Protestant and Catholic, Jewish and Muslim, Jehovah's Witness and Hmong, evangelicals and agnostics. Some live blocks and others thousands of miles away. Some are attended by round-the-clock vigils of family and friends; others languish alone in their room, day after day, without a single visitor.
The patients are as diverse — literally — as the American census. Yet what they have in common is so much more fundamental than mere demographics or the circumstances of their visit. Whether comatose, nonresponsive, unconscious, sedated, or suffering cognitive deficits or dementia, they cannot speak for themselves. Denizens of intensive care units offering the highest-tech interventions that modern medicine has invented, they lack the capacity to direct their care — to embrace or refuse surgeries, procedures, medical devices, medications, or life-sustaining treatments that might cure their disease or relieve their symptoms, extend their lives or their suffering, restore their quality of life or destroy it, cheat death or sentence them to a fate worse than death. The biggest life-and-death decisions of their lives — literally — had to be made by someone else.
Hospital records will tell you that more than half didn't make it out of the hospital alive — nine in ten of them, because someone directed physicians to stop aggressive measures. They will document what procedures were performed or tally the many millions of dollars collectively paid for that care. This book will tell a different story. I look beyond the hospital bed and gaggle of white coats administering to unresponsive bodies secured with a tangle of lines, tubes, and monitors — activities methodically documented in the medical record and in many other books and articles — to the anxious faces of loved ones hovering nearby, and to waiting rooms and conference rooms and hallways. I tell the stories of these others, without the white coats, who also hold life and death in their hands, however reluctantly. It is easy to forget, in the drama of saving lives, that their stories are often the most decisive. After all, for every patient who died despite their doctors' best efforts, nine others did so at the behest of their loved ones.
Loved ones hold life and death in their hands because Americans' constitutional rights of autonomy and self-determination to make decisions regarding medical treatment are so sacred that they are extended by law to proxies or surrogates authorized to decide on patients' behalf when the latter cannot. Intensive care units represent ground zero for surrogate medical decision making because of the gravity of the illnesses and injuries they attract and the aggressive interventions they offer. Two studies found, for example, that because so few ICU patients have decision-making capacity, 96–97 percent of decisions to withhold or withdraw life support were made by someone else. Although impaired capacity may be commonplace in intensive care units, it is not uncommon elsewhere, especially near life's end. One study found that 70 percent of Americans aged sixty or over requiring decisions about care and treatment in the "final days of life" lack capacity to make these decisions. Because these numbers are so large, most of us will someday be called on to act as a health care surrogate on behalf of another and perhaps need one ourselves.(Continues…)
Excerpted from "Speaking for the Dying"
Copyright © 2019 The University of Chicago.
Excerpted by permission of The University of Chicago Press.
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Table of ContentsOne / Holding Life and Death in Their Hands Is This for Me? Two / The Intensive Care Unit Personnel
Conclusion Three / Actors Patients
Friends, Family, and Significant Others
Health Care Professionals
Conclusion Four / Decisions Informed Consent
Conclusion Five / Prognosis Evidence
Conclusion Six / Decision-Making Scripts The Legal Script
Conflicts of Interest
Law at the Bedside
Conclusion Seven / Improvisation: Decisions in the Real World The Patient Should Decide
Reprising Patient Instructions
Standing in the Patient’s Shoes
It’s God’s Decision
What We Want
Denial, Opting Out
Conclusion Eight / Making a Difference? The Role of Physicians
Opting for a Trajectory
I Thought the Law Would Take Care of This
Does Any of This Matter? Nine / The End Implications
Before It’s Too Late
When It’s Too Late
When “This” Happens to Me
Appendix A: The Research
Appendix B.1: Patient Occupation
Appendix B.2: Patient Age, Gender, and Marital Status
Appendix B.3: Location and Purpose of Observed Meetings
Appendix C: Relationship between Multiple Trajectories Traversed
Appendix D: Decision Trajectory by Patient and Surrogate Characteristics
Appendix E: Advance-Directive Status and Aspects of the Decision-Making Process, Outcome, and Impact