We Need More - and Better - Ways to Die in America

A series of cases surrounding the shifting definition of death were brought before the public in the 1970s, including that of Karen Ann Quinlan. Quinlan was twenty-one when she collapsed after drinking alcohol and taking Valium. She had been unconscious and not breathing for more than fifteen minutes by the time paramedics arrived and resuscitated her. How much of her brain was still functioning was a mystery. After she had been kept alive on machines for a year, her parents “began to ask a question never really asked before in human experience: Should they turn off the respirator, which could not return their daughter to ‘living’ life, and allow their daughter, Karen Ann Quinlan, to die?” writes lawyer William H. Colby in Unplugged: Reclaiming Our Right to Die in America. The hospital feared homicide charges and refused. The Quinlan case, which flooded national and international headlines, was taken to the New Jersey Supreme Court, which side-stepped the “is Karen alive?” question. The court determined that a patient and her family had the right to privacy and could deny medical treatments, even if that denial meant certain death. Americans in their living rooms watched the media drama the Quinlan family lived through and en masse decided that being artificially kept alive on machines was not their idea of a good death.

In 1969, Elisabeth Kübler-Ross, a Swiss American, published a study on the five stages of grief, On Death and Dying. The book focused attention on patients at the end of their lives and began the grassroots movement to improve end-of-life care in the United States. The first modern hospice was opened here in 1971. Now, nearly 1.5 million deaths (out of a total of 2.5 million) occur in hospice each year. The number is misleading though. While patients can be admitted to a hospice program if they are diagnosed with six months or less to live, the average stay is less than two weeks. More than a third die after only seven days in hospice. One challenge is the requirement that patients’ end curative treatment before being admitted; some are not ready to give up the hope for recovery. While the focus of hospice is to keep dying patients as comfortable as possible, financial, familial, cultural, and ethical variables continue to make the hospice experience different for every patient. Some have families with enough resources—money and time—to care for them as they die at home (Medicare typically only covers four hours of in-home care a day, not enough for those who are immobile or alone). Still others are moved to in-hospital hospice wards when they or their family finally acknowledge that their illness can’t be cured. Others finish out their days in an elder home, with a hospice nurse paying visits to the facility. There are also designated hospice facilities, like the one my father died in.

Alongside the growth of the hospice movement came the autonomy movement, which pursued another route in its search for a good death: the law. Forms such as advanced directives, medical proxies, and living wills have been developed to help us make our final decisions; laws have been enacted at the state and federal levels to protect those decisions. After my father’s death, I went straight to our family lawyer and had him draw up my own will and medical proxy. Everyone who knows me well knows where these documents are kept (in a manila envelope in the gray metal file box to the right of my desk, the numbers for my sister and my lawyer on a Post-it note stuck to the outside). Yet the existence of laws that protect my end-of-life wishes doesn’t mean I’ll get what I want should a bus hit me on the busy streets of Manhattan tomorrow. Routinely, law is thwarted by practice: an ambulance crew, say, that must resuscitate me and has no way of knowing what my living will says or even if I have one; an estranged relative showing up at my hospital bed to demand that everything be done to “save my life”; even my grieving family’s inability or unwillingness to request that life support be stopped.

Depending on what factions of the hospice and autonomy movements you look at, they’ve overlapped and learned much from one another over the last forty years. An emphasis on community and family relations imbues each with a focus on support structures and joint decision making. The well-being of the patient is rightly primary. Yet both movements are still without power in the face of endless medical advancements, uninformed legislators who shape end-of-life laws, “pro-life” activists who eschew choice for saving “life” at all costs, and general ignorance of what dying is like. Neither movement has fully grasped the meaning (and variability) of its own resounding principles: dignity and a good death. Dignity and a good death, just as death itself, continue to be terms that are ill defined. They’re concepts that are unique for each one of us, depending on our age, culture, faith, interests, and a host of other factors. How can hospice, with its intentional and specific idea of a good death, and how can the autonomy movement, with stacks of legal documents, ever anticipate the variety of death experiences?

Furthermore, because of the institutionalization of death—our removal from it and our inability, through experience, to know how it happens—and the numbing effects of grief, we often don’t so much make decisions as drift into passive indecision and acquiescence to authority, whether it be that of doctors or nurses or a hospital board. It’s what Joanne Lynn, a geriatrician at the College of Medicine at Ohio State University, called the “glide path.” Patients are encouraged by medical staff to comply with a phalanx of tests and treatments that bring hope but don’t improve their loved one’s health, and that often increase pain and suffering. The next thing they know, ninety-five-year-old grandma is prescribed a new drug for her Alzheimer’s (that costs the family’s savings and may or may not react with whatever drugs she’s already taking) or eighty-two-year-old Uncle Ben is headed into surgery for a new knee, his stage-four cancer notwithstanding. Bereft families who are left feeling helpless look to medical staff to do something. It’s hard for them to know when there’s nothing beneficial left to do, particularly when hope is so often considered to have benefits of its own.

Hope is prayer’s second cousin, darkly dressed and hovering around the outside edge of the family photograph. If prayer is a plea to the Almighty for a precedented miracle—prayer’s memory is long—hope is a plea to nothing, to everything, to any possible refutation of the facts. It is tethered to the dreadful single-digit percentage, the medical equipment humming, the long sleepless night. Prayer can (or once could) deliver a miracle; hope can only give a body another week, maybe another month. Sometimes the dying can set goals and reach them: just let me see my son get married, my granddaughter turn ten, my family carve into the Thanksgiving turkey. Hope can outlast dress fittings, gift wrapping, and potato mashing, but it can’t deliver anything more. What hope does best is make plans. Sometimes those plans are to desperately avoid the worst.

Two years before he died, Dad mentioned that he was thinking of shooting himself or hanging himself out behind the shop. When things got bad, he hoped to find a painless way out. I was terrified I’d be the one to find him, his body swinging somewhere or bloody and mangled. I told this to a friend who brought me a copy of Final Exit: The Practicalities of Self-Deliverance and Assisted Suicide for the Dying, the New York Times best seller first published by Derek Humphry in 1991. Humphry, a brusque and controversial figure, was a principal founder of the Hemlock Society in 1980. Final Exit outlines the ways in which a person can kill himself, without legal ramifications. I read it and read it again, then gave it to my father. I was certain that, if I ever had to make the decision to end my life, I knew exactly how I would do so (sleeping pills, turkey basting bag over the head, loose rubber band around my neck to keep the carbon dioxide in), and my father would find his way, if he wanted to. I wanted him to know that whatever he decided, I supported him. Instead, he found death, good or not, in a hospice facility far from his beloved hollow.

When I finally left Africa for home, I quickly realized that all the hurt I thought I was working out on the road was still there, where I had left it. The divorce papers, the job search, the house that Dad built—my memory’s catalog of images consistently fell open to the same one: my father, almost naked, pale, lean, and contorted. I realize that in many ways, my memory’s recall of this image was my need for what Susan Sontag called, in her 2003 book Regarding the Pain of Others, “the pleasure of flinching.” It’s an easy memory to access because it hurts so much, but also because it made me feel close to him again. Yet it was crowding out all the good memories I had from our life together, like when we’d catch each other’s eye some golden afternoon while cutting wood on the farm. Or the comforting intimacy of his voice when I’d call him out of the blue to talk about the rain. His twisted body, arranged in a way it never would have been had he been alive, was crowding out all the things I loved about him. I replayed the last hospice scenes in my head. Did everyone die this way, fighting with both arms and legs until the needles came? I wanted to know if his had been “a good death.” And if so, might it come for me the same way?

It was clearly time for me to find another way to deal with my grief. Like my decision to get out of the country after he died. But this time, instead of running away from it, I had to get closer to it. I had been unmoored by my own grief for so long that I had no alternative but to finally make sense of it, to wrestle it to the ground and know it. To function in the world again, I’d need to understand what had happened to my father, to my family, to me—to all of us. I didn’t grasp the nature of this work at the time, but I was doing what Peter Trachtenberg describes in The Book of Calamities: I was launching myself into an investigation with all the raw energies and emotions I had put into grieving. “Before suffering people can form a coherent picture of their suffering,” he writes, “they must first ask questions about it, or maybe of it. In doing so, they are performing the work of science and philosophy, interrogating their reality in order to derive a thesis about it.”

Finding a good death seemed about as likely as finding the fountain of youth. What was good about dying? I had no idea where to begin, but since my reality of death began with hospice, I became a hospice volunteer. Most anyone can volunteer, and training is fairly brief, but hospice programs are constantly in need of more willing participants. Volunteers are warmly welcomed. I learned how to sit with other peoples’ dying. And I kept going. I followed my pain-filled curiosity to conferences and clinics, to academic lectures and to grief sessions in church basements, to isolated prison cells and to pale-blue hospital wards where every hushed word could be the last. I didn’t care if it was a morbid inquiry or a vain self-improvement project. I asked questions, yes, but mostly I listened to the stories of others who were close to death, their own or a loved one’s. I pursued an expert’s knowledge of how we human beings, in this time and country, slide into death or thrash at the end, and how those of us left behind stumble around in the absence. I told myself that this investigation was something that my father, who never let a loose chair leg or a broken appliance go unfixed, would have appreciated, if not encouraged. Something was rattling around, and I was going to set it right.

From my very first days as a hospice volunteer, I learned that I could help individuals to have better lives and deaths by doing little things like listening, being present, and understanding their experience. But I also quickly found that improving deaths was not simply a matter of telling patients what their options were and letting them choose. Improving deaths involved more than the little things. Educating doctors to talk to patients about their ends is vital, yes, and so is educating patients on what to expect, but doing so will not better the way all people die, just the ones that message reaches. Helping one family to remove an unwanted ventilator wasn’t going to prevent the next from having to make the same decision, nor was it going to change a process that had developed over time to default to ventilators. It wasn’t going to address the complicated needs of a vast number of elders approaching end of life in the next few decades, an elder population we aren’t prepared to care for. It wasn’t going to correct the desperate financial challenges that individuals and the country face, that particular demographic groups—economic and financial minorities, for instance—struggle with every day. And it wasn’t going to answer the question of how we got here, to a place and time where the dying are misunderstood, ignored, underserved, and ill informed.

A larger understanding was necessary: of why we die the way we do today; of the development of medicine and concepts of choice, autonomy, informed consent; of how hospice and hospital cultures were formed and perpetuated; and of what our regard for the dying has become in broader society. Too, the laws that regulate what is available to the dying had to be considered, along with their purpose and origin. As well, the financial systems that had locked us into the untenable way we currently die. Religious and other cultural forces also play a role in how we die. I had to ask myself how all of these interactions influenced end-of-life care. By focusing on individual lives and deaths, it became clear to me that changing the way we die would be a project of depth and breadth, one that involved loving care for patients as well as a fearless examination of the social, legal, and institutional systems that governed the end of our lives.

Excerpted from The Good Death: An Exploration of Dying in America by Ann Neumann (Beacon Press, 2016). Reprinted with permission from Beacon Press.