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A Better Death

Three decades ago, my grandfather attempted to end his life in the most dignified way possible. What his failure teaches us about our still-broken system of care.


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Death’s Reformers

Dr. BJ Miller, former executive director, Zen Hospice Project.

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Dr. Jessica Nutik Zitter, attending physician, Highland Hospital.

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Dr. Shoshana Ungerleider, physician and philanthropist.

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Torrie Fields, senior program manager for palliative care, Blue Shield of California.

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The Reverend Cynthia Carter Perrilliat, executive director, Alameda County Care Alliance.

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On the evening following his 80th birthday, after saying goodbye to his brothers, his children, and his grandchildren, my grandfather overdosed on sleeping pills.

He had been suffering for months. A malignant cancer originating in his prostate had metastasized to his bones. With the help of a local member of the Hemlock Society, a right-to-die advocacy organization, he decided to force the issue and take his own life. The next morning, my mother asked me to accompany her to my grandfather’s bedroom to check on his body. As soon as I entered the room, something felt wrong. He seemed to be sleeping comfortably. I put my hand on his chest. I looked up at my mother.
“He’s still breathing.”

For reasons known only to himself, my grandfather, Dr. Robert S. Morison of Peterborough, New Hampshire, had decided not to ingest the full, lethal dose of pills. Instead of taking his own life, he had put himself into a coma, where he would remain for the next several days until his organs finally surrendered and he expired, not in the comfort of his own home and surrounded by family members but attended by unknown nurses and doctors inside a small hospital 30 minutes away. The family patriarch, a man who had prided himself on his rationality and forethought, a man with a medical degree, had botched his own death.

The memory of that incident, which took place 31 years ago, has confounded me ever since. While I have always been inspired by my grandfather’s resolve to take charge of his own demise, I’ve also been dismayed by the knowledge that one of the most capable people I have ever known—a former director of medical and natural sciences at the Rockefeller Foundation, a professor of biology at Cornell and MIT, and the author of a 1973 essay in Scientific American about the underpinnings of the then-nascent palliative care movement titled, appropriately, “Dying”—managed to bungle his final act so spectacularly. The manner of his passing was a disappointment and a warning. You can’t just scribble “death” down on your to-do list. It’s not a box you can check off. Death is hard and messy. Death is unknowable.

This was as true next to my grandfather’s would-be deathbed in 1986 as it is in “good death”–obsessed California in 2018. Even though the current moment is rife with books, documentaries, TED Talks, conferences, and startups devoted to getting death right, we’re still struggling as a society with both the ethics and the economics of dying. With 10,000 baby boomers aging into Medicare every day, the business of old age, declining health, and palliative care carries enormous economic implications. By 2010, 25 percent of Medicare spending came in the last year of life. This enormous outflow of capital in the service of avoiding an event that is, so far as we know, unavoidable poses a mortal threat to the federal safety net. There is a growing consensus among both Democratic and Republican politicians, says Andrew MacPherson, a healthcare policy analyst who did work for both Obama’s and Hillary Clinton’s presidential campaigns, that solving the economics of death would constitute true entitlement reform. And yet those same lawmakers, many of them baby boomers themselves, appear unwilling to actually change the system for the better. The most self-absorbed generation in American history is preparing to meet its maker, and it seems to want to take the rest of us with it.

Into this ethical-political-fiscal quagmire has leaped a new generation of palliative care physicians, insurance company CEOs, startup entrepreneurs, and healthcare policy analysts—many of them based here in the Bay Area—who are facing up to the harsh realities of death in the same courageous way that my grandfather once did. You could not find a better snapshot of the current vanguard of death reformers than at the daylong symposium End Well: Design for the End of Life Experience, held at the InterContinental San Francisco hotel last December. In addition to the aforementioned doctors, insurance disrupters, and healthcare policy wonks, the lineup included some eclectic surprises: A Tribe Called Quest’s Ali Shaheed Muhammad spoke on faith, art, and mortality; the managing director of Peter Thiel’s investment fund talked about longevity hacking; and a psychologist from NYU presented his research on “transcendence through psilocybin” for the seriously ill.

As I settled in to hear the symposium’s keynote speaker, Dr. BJ Miller—former executive director of San Francisco’s Zen Hospice Project and coauthor of a forthcoming book tentatively titled How to Die: A Field Guide—my grandfather’s untidy death was far from the top of my mind. The passage of three decades had long since worn the sharp edges off my shock. I was mainly curious to see what the Bay Area’s suigeneris blend of New Age philosophy, culture hacking, and technological hubris had to say about the final frontier. But then Miller started exploring, in his trademark calm, mellifluous style (nearly seven million people have watched his TED Talk on death), the many reasons why “ending well” is both a personal and a social imperative. As he talked about this fraught universal passage, the spigot turned, and memories of my grandfather started flooding in. Suddenly I was back in his bedroom, feeling all over again both my love for him and my confusion at his disturbing exit.

Ten hours and many speakers later, I left the conference shaken and moved. The organizer of the symposium, 37-year-old California Pacific Medical Center (CPMC) doctor and philanthropist Shoshana Ungerleider, later told me that her goal for the gathering had been to spur an “interdisciplinary” dialogue about the end of life. But what she achieved was much more than that: It was not just a platform for discussing how we might die better. It was a living memorial to those who had died in preventable misery and at unnecessary expense. Numerous speakers brought to the stage their own personal stories of loss and death done wrong. Invocations of the Buddha melded effortlessly into discussions of Medicare reimbursement codes. A standing ovation erupted after Torrie Fields, Blue Shield of California’s point person for palliative care, recounted for the first time in public how two separate diagnoses of cervical cancer had inspired her to spend her life fixing the way the healthcare system deals with the seriously ill. I came ready to mock; I left inspired to reexamine my grandfather’s death and intrigued by whether the current “end-of-life movement” could explain how such a mistake had happened—and perhaps keep the rest of us from repeating it.

In 1973,
13 years before his passing, my grandfather wrote what turned out to be an eerily prophetic article for a special issue of Scientific American whose subject was “Life and Death and Medicine.” In the piece, he discussed the merits of hospice care, advance directives, and physician aid in dying. But his central point zeroed in on a dawning realization about death in American society. The medical profession’s stunning success at deploying new technologies to cure disease and extend life had, my grandfather argued, outstripped doctors’ ability to act appropriately in the best interest of their patients. In the quest to keep people alive, doctors were inadvertently prolonging suffering. “The past few years,” he wrote, “have seen a growing awareness that the big general hospital is not a very good place to die…. Only very recently has the general public or even the medical profession begun to realize that the attitudes and techniques developed in the battle against untimely death may not be entirely appropriate in helping the aged patient adapt to changed physiological and psychological circumstances.”

As a summation of some of the core arguments of today’s end-of-life movement, my grandfather’s essay could hardly have been more prescient. I was startled to see how many of his observations were echoed and reinforced at the End Well symposium. Chief among them was this: It is not just more humane to give patients the deaths that they say they want (usually at home, free from suffering, and in the presence of their loved ones) rather than the deaths they all too often receive (isolated and in pain in an ICU or longterm care facility). It is also far cheaper. “Recent studies of home care for seriously ill patients,” he wrote, “suggest that in many cases it can be not only more satisfactory emotionally than hospital care but also considerably less costly.”

Forty-four years after my grandfather opined on the dysfunctional relationship between the American healthcare system and the care requirements of the seriously ill and dying, that relationship has become only more broken. Medicare, which in 2016 was used to pay for the deaths of 80 percent of Americans, works on a fee-for-service model: Hospitals and doctors are paid for specific procedures that are carried out on patients. The logical result is that the medical system is financially incentivized to maximize expensive interventions. There have been baby steps toward a “value-based model of care” that makes patient quality of life the primary criterion for compensation, but progress has been slow.

“Are people getting care that is actually consistent with their goals?” asks Dr. Jessica Nutik Zitter, an attending physician in critical and palliative care at Oakland’s Highland Hospital and the author of 2017’s Extreme Measures: Finding a Better Path to the End of Life. “That’s something that a doctor should be measured on, and not just ‘How many cardiac catheterizations did you do?’ and ‘Did people survive for 30 days?’” But perhaps the biggest sticking point holding back progress is the lethal minefield awaiting anyone who tries to make a costbenefit argument for palliative care. Woe to those who give any seriously ill person the slightest whiff that budget crunching might be affecting the quality of their care.

If an insurance company or government agency has a financial interest in avoiding paying the huge expenses associated with the end of life, patients and their families will naturally be skeptical of any suggestion that a feeding tube or full-code cardiac resuscitation might be inadvisable. Such sentiments are especially prevalent within communities of color, which have a long history of shoddy treatment by the medical establishment, says the Reverend Cynthia Carter Perrilliat, executive director of the Alameda County Care Alliance, a nonprofit that works to coordinate end-of-life services for primarily African American communities in the East Bay. “Atrocities have occurred and still occur,” Perrilliat says, citing the example of the Tuskegee Institute’s notorious syphilis study involving rural African American men. The mindset, she says, is “If I am in a situation where my heart stops beating, give me everything, because I don’t trust that you are going to do the right thing for me.”

The distrust manifests in other ways as well, ways that translate fluently into politics. The palliative care and end-of-life communities are still scarred by the “death panel” battles that exploded during the war over the Affordable Care Act in 2009. Sarah Palin’s devastating attacks on a proposal that would have compensated doctors for talking to patients about advance directives were something that no one saw coming. “At the federal level, you could not utter anything end-of-life for six or seven years,” Miller says.

Long after the dust settled, at the end of 2015, the Centers for Medicare and Medicaid Services did finally end up authorizing a new Medicare billing code that allowed doctors to file for a reimbursement fee of $86 for a 30-minute consultation with patients about advance directives. Doctors were quick to take advantage. In the first six months of 2016, 14,000 healthcare providers billed $35 million for end-of-life counseling sessions with 223,000 patients.

But Nutik Zitter snorts when I ask her if $86 for a half-hour conversation is enough to counter the financial incentives that influence how death happens in hospitals today. Talking with patients about advanced care, she says, is extraordinarily difficult. Leading a conversation in which the possibility of death must be acknowledged calls for the skills and sensitivities of a therapist, a social worker, and a spiritual guide all rolled into one, qualities that the current medical school training curriculum doesn’t emphasize. (A study published by the Journal of the American Medical Association in 2016 reported that 70 percent of doctors haven’t been trained to have difficult conversations with patients.)

When questions of mortality are raised within a hospital setting, Nutik Zitter says, it is not uncommon for “patients and families to scream you out of the room, start crying, to look at you like you are the worst doctor in the world, to say they want a second opinion. I mean, it’s hard.”

“Over 50 percent
of Americans die in pain,” Nutik Zitter wrote in Extreme Measures. “Seventy percent die in institutions. And 30 percent of families lose most of their life savings while caring for a dying loved one.” Reading those sentences, written nearly half a century after my grandfather’s warning decrying exactly such a scenario, it’s easy to think that little progress has been made in the quest for a good death. But a closer look reveals a more complex narrative, thanks in no small part to a tradition of activism and research in the Bay Area.

Palliative care distinguishes itself from other fields of healthcare by focusing primarily on quality of life—on treating symptoms and on managing pain—and not on locating a cure. Starting in 1999, the Advanced Illness Management program at Sutter Health provided some of the first quantitative proof that quality home-based palliative care for patients with late-stage chronic illnesses could be provided at lower cost than hospital-based acute services while also resulting in greater patient and family satisfaction. UCSF is home to one of the nation’s first hospital-based palliative care programs. Before the arrival of the antiretroviral drugs that made living with HIV infection manageable, the devastation inflicted on San Francisco by the AIDS crisis starkly clarified the necessity and value of palliative care and hospice services.

The end-of-life activists who headlined End Well are building on that tradition while also reflecting the values of a generation that is all too familiar with how death happens in the modern hospital and wants no part of it. (In a survey of 1,100 young doctors conducted in 2014, 90 percent said they would choose a “do not resuscitate” advance directive near the end of life.) The symposium’s organizer, Ungerleider, is a case in point. As a resident doing her ICU rotation, she witnessed the suffering experienced by elderly patients with terminal illnesses who were being subjected to extreme medical interventions, incidences that caused her “personal frustration and moral distress.”

But unlike most young doctors, Ungerleider had the wherewithal to do something tangible about her frustrations. Philanthropy runs in Ungerleider’s family. Her great-grandfather, D. Samuel Gottesman, a pulp and paper tycoon and successful banker, purchased the Dead Sea Scrolls and gifted them to the state of Israel. Her grandmother, Joy Ungerleider-Mayerson, was a generous supporter of the New York Public Library and the director of New York’s Jewish Museum. In 2014, Ungerleider, a self-described “type A psycho-perfectionist,” established a foundation committed to furthering palliative care education. Among the foundation’s projects have been a lecture series at her hospital, CPMC, in Pacific Heights; two well-received documentaries tackling end-of-life issues; and the End Well symposium.

For Ungerleider, the main reason that palliative care advocates haven’t made more progress since my grandfather’s day is a simple lack of awareness. A survey carried out by the Center to Advance Palliative Care found that 70 percent of respondents did not have a clear understanding of what palliative care was. But when it was explained to them, upward of 90 percent expressed a desire for it. Ungerleider’s overriding mission is to spread the gospel, to ensure that patients know that they can get care that “honors their goals and values.” “Far too many people are suffering in their last moments in life,” she says, “because they haven’t been given options, and discussions haven’t happened to make sure that the care that they receive is care that they really want.”

Compounding the awareness problem, Miller says, is a basic paradox of modern existence. The pace of technological change in medicine keeps accelerating, but our ability to understand and act upon the changes—a kind of sociocultural coming to grips with new, life-extending implements—progresses much more slowly. “The steam that technology gained in the early ’70s has only sped up,” Miller says. “There is nothing that has reversed the rate of technological advance. The gap between our technology and our ethos is only widening.”

And even those of us who are willing to accept, talk about, and prepare for our own inevitable demise still must do battle against fundamental biological survival imperatives, the “hormonal fight-or-flight responses,” Miller says, that often overrule our rational decision-making when our lives are threatened. “Sometimes I hear myself and others berate people for being in denial—like, ‘What’s wrong with you, you don’t think about your own death?’” Miller says. “Well, actually, I think that there is a lot in us to overcome to get ourselves to think about death and to look at it in some real way.”

Doctors can do wonders with immunotherapy drugs and organ replacement and yet still be confounded by the basic human challenges of talking and listening. This, too, was something my grandfather anticipated in “Dying.” “Physicians have been seduced,” he wrote, “if not actually betrayed, by their very competence. They can do a great deal for their patients at a purely technological level and at the same time they face nothing but uncertainties when they confront the ineluctable ills of the spirit. Is it any wonder they rejoice in the one and neglect the other?”

So combine it all: A broken healthcare financing system, the legitimately astonishing life-extending wonders of modern medical technology, gridlocked politics, a basic lack of awareness of what palliative care is, the imponderables of the spiritual crisis of faith inevitably associated with the final reckoning… maybe our stunted progress isn’t so befuddling after all.

But maybe, if we stay focused on the paramount objective that the palliative care evangelists all take pains to emphasize—the fostering of an environment more conducive to informed conversations about end-of-life goals and treatment options—we can start to speed up the pace. And maybe, if I had paid closer attention to the full story of my grandfather’s death, I would have grasped this essential point much sooner.

“What then,” wrote my grandfather,
“can be done for that large number of people likely to slip into an unanticipated position of indignity on a deathbed surrounded by busybodies with tubes and needles in their hands, ready to substitute a chemical or mechanical device for every item in the human inventory except those that make human life significant?” It seems clear enough that my grandfather overdosed on sleeping pills because he did not want to slip into that “position of indignity.” It is a little more perplexing that in his article, after discussing euthanasia (whether doctor-assisted or self-induced), my grandfather concluded that, ultimately, since only a tiny fraction of the seriously ill would opt for such a drastic outcome, it wasn’t worth society’s attention. “The overwhelming majority of physicians and certainly a substantial majority of laymen instinctively recoil from such active measures as prescribing a known poison or injecting a large bubble into a vein,” he wrote. “There seems to be a point where simple human reactions supersede both legal sanction and rational analysis.”

How did his own actions fit into that framing? Did the pain of bone cancer change his calculus? I’ll never know. I’ll also never know why he didn’t swallow all his pills. My mother speculates that he might have feared gagging on them and taken the fewest he thought were necessary to complete the task. I also wonder whether he just flinched. Even Miller is on record admitting that he’s not absolutely sure how he will react when he faces death—and this from a survivor of a near-death experience that left him without three of his limbs. My grandfather was a beloved man in the bosom of his family who had just shared wrenching farewells with the people he was closest to. Who could blame him for stumbling at the finish line?

Well, I did, for many years. But then I refamiliarized myself with exactly what happened in the days after my mother and I entered his bedroom. I had a plane to catch back to Taiwan, where I was then living. My mother contacted my grandfather’s younger brother, a successful businessman in southern New Hampshire who was aware of my grandfather’s wishes. My great-uncle contacted a close friend of his who was a locally prominent doctor and explained the situation. My grandfather was then moved to a small hospital in a town not far from his home, where the caregivers were instructed not to engage in any life-extending measures. “All they did was moisten his lips with a wet towel,” my mother recalls. Less than a week later, without ever regaining consciousness, he passed away.

Funny, that. For decades, I’ve carried around a sense of disappointment in my grandfather, tied to the moment when I put my hand on his chest and recoiled at the feel of his heartbeat. But the unvarnished reality—he was simply unconscious for a few days before his death—hardly qualifies as a tragedy. The story might have been different if we had called an ambulance and sent him to the nearest hospital, where we had no personal relationships to leverage in the service of his care. But to borrow Ungerleider’s mantra, we knew his “goals and values.” So we were able to make sure he avoided “unanticipated indignity.”

I recall another conversation that took place the day before he died. My grandfather was sitting upright on his four-poster bed, his back supported by pillows, books and periodicals strewn by his side. His owlish face was paler than usual, but his mental acuity was intact. I cannot remember the exact subject we were discussing, but I’m pretty sure it was some event or person from ancient history. What I do recall is that he asked me to retrieve from his study the corresponding volumes from two different editions of the Encyclopedia Britannica, separated by nearly 30 years, and bring them to his bedside. He then had me read two articles on the same topic, one from each encyclopedia.

The passage of three decades had resulted in a starkly different interpretation of something that had happened thousands of years earlier. My grandfather mused on how the state of the art of our knowledge about ourselves and our world is constantly evolving, constantly constructed anew. This seemed to please him.

I like to think he would be pleased to see how much broader the conversation about death is today than it was in his time, how what seemed radical and visionary in the 1970s is becoming more commonplace in the 21st century. My grandfather’s death, I’ve come to realize, was the opposite of a disappointment. Instead it was the clearest possible demonstration of the benefits of ensuring that those around you know what you want.

The honor and respect that the Bay Area’s leading end-of-life activists aim to bring to the moment of death gave me an unexpected opportunity to come to terms with my grandfather’s passing. After reengaging with his spirit and contemplating his critique of 20th-century medicine, I’ve come to believe that he did as good a job with his own death as he could. And that’s all one can really ask. We may blink when the moment of truth comes, but that is no disgrace. It is a final testament to our love of life.

Originally published in the April issue of
San Francisco 

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