How to Die in America: A Conversation with Ann Neumann

"As She Lay Dying," courtesy of Flickr user A.D. Wheeler via Creative Commons

Nobody likes to talk about death. And when we do talk about it, we romanticize it, or veil it in mystery. “The way we talk about dying and the way we die are two very different things,” writes journalist Ann Neumann.

Grounded in a narrative of her own experience caring for a dying parent, Neumann’s new book, The Good Death, joins a spate of excellent books about dying published in just the last few months.

The Good Death traverses a wide range of issues surrounding death and dying in America, from the frequent overtreatment of elders, to health inequality, to the role of religion in making end-of-life decisions.

Neumann argues, in the course of an eloquent and powerful exploration, that we need less of the mystery surrounding death, and that we need to not only think and talk about it in all its terrifyingly messy realness, but also prepare for it.

We talked with Neumann recently via email.

RD: Why is it important for us to have a conversation about death right now? 

Ann Neumann: There are a few reasons why we are necessarily discussing death now. For several generations, death has been institutionalized, hidden behind curtains and managed by professionals. So those of us who are dying or caring for the dying have no idea what’s coming. We’ve grown accustomed to seeing death all the time, in movies, in books, but those versions are romanticized.

The Good Death: An Exploration of Dying in America
Ann Neumann
Beacon Press
February 16, 2016

This lack of knowledge of how death comes is now compounded by a general health care crisis. The American population has grown older than ever before; our heath care system has not taught itself to address pain and suffering at the end of life or even conversations about terminal diagnoses and death. There are not enough gerontologists to meet the needs of elders. And seniors are being financially devastated by the costs of end-of-life care.

I joke that my generation may be the last to inherit wealth from our parents, but it’s not funny. Social security is not enough to live on and elders are finding that they can’t afford their medications.

At the same time, we’re not preparing for the future. An epidemic of futile care is ravaging seniors, putting them through one more round of chemotherapy, one more experimental treatment, one more test, simply because our culture has taught us to fight, fight, fight or be shamed. Too, doctors have been taught to “do everything.” So overtreatment has become the mantra of end-of-life care, whether these treatments can cure an illness or pain or not.

Health inequality is built into our school system, our incarceration system, our food delivery system, our public housing. I could go on. In other words, we’re having this public dialogue about disparity and end-of-life care because we’re in crisis. We don’t have a choice. Too many people are suffering.

Your book asks questions about what we mean when we say that a person is “alive.” As you point out in the case of Nancy Cruzan, for example, there were two camps: “One saw ‘alive’ as having some form of consciousness; the other saw it as a beating heart, not a working brain.” What makes this distinction more complicated than it might first appear? 

When respirators and defibrillators were introduced in the early 1970s, they were miraculous in their ability to save lives. But they also changed the definition of death as something reliant on the brain. The brain, however, is still a mystery to us. And so there remain some groups, whether religious or political, that believe that the heart is still the final indicator of life or death.

But what if that heart is kept functioning by a machine? Or to come at it another way: how much brain function do you have to have to be alive? Just your brain stem (which controls sleep patterns, yawning, swallowing)? Must you be conscious? Must you recognize your mother?

We’ll always disagree on what amount of brain functionality makes us human, alive, who we are. And so we may always have a conflation of some levels of brain damage with mental disability. Terri Schiavo‘s brother, Bobby Schindler, for instance, says his sister was mentally disabled.

And could you talk about the distinction, too, between longevity versus good care as the main goal of medical treatment? 

If you had the choice between two more months of life or six more months of life—but in excruciating pain (whether it be existential or physical), which would you choose? Some elders, who are watching their friends’ deaths drag on for unpleasant months and years are saying, hey, no thanks. They’re pressing doctors and legislators to give them a way out of that prolonged dying process by advocating for legal aid in dying, for do not resuscitate orders, for advance directives and living wills that clearly state what treatments they do and don’t want. Quality of life is what they want and the medical industry is slowly, so slowly, responding to their fears of a long and painful death.

Before writing this book, did you start out having a strong opinion either way about physician-assisted death? Can you talk about one particular event that strongly affirmed or contradicted your beliefs about end-of-life care?

After caring for terminal patients as a hospice volunteer and after my subsequent research, I found that the aid in dying movement was a symptom of a host of other problems with our end-of-life care systems. Hospice is not adequately used. It is limited by Medicare requirements to only six weeks when so many need long-term care but are not immediately terminal. Our doctors are often untrained in how to talk to patients about the ends of their lives or even how to give terminal diagnoses. Our social systems have shifted in such a way that women, those who have traditionally cared for their elders, are either far away or lack the time and resources to do so.

Even after the Affordable Care Act, 30 million Americans still lack health care coverage—and therefore have limited or no medical care, even preventative. Not to mention the millions of undocumented people in the country! Those who can afford to hire caregivers are lucky; but those caregivers are often inadequately paid under the table. From beginning to end, I began to get a picture of how poorly we care for elder and terminal patients. So my understanding of the Death with Dignity laws was of course clarified by this.

But once I began to compare what the Death with Dignity laws make legal—after receiving multiple requests from a patient, verbally and in writing, a doctor may prescribe a lethal dose of medication to that terminal patient who may, but is not required to, take it themselves—the laws and their popularity made perfect sense to me.

Considering the gross lack of other care, the epidemic of medical over-treatment of elders, after comparing the popular (and often tainted) language about aid in dying to the solace that it gives patients and their families, yes, my opinion changed.

What I once thought was drastic became familiar. Doctors medicate patients to the ends of their lives all the time; it’s called terminal sedation. And it is humane. The patient is dying, they are in pain, the doctor gives them enough morphine to end that pain, even if it slows their breathing to an end.

Comparing my initial understanding of these issues, aid in dying, poor end-of-life care, and terminal sedation, to what I was learning is in part what made writing this book so compelling for me.

One particular event that changed my mind? There are so many. But meeting the daughter of Robert Baxter, the man who successfully brought the case in Montana, moved me greatly. Roberta King didn’t want her father to die. She wasn’t at all supporting killing or elder abuse—as so much rhetoric from those who oppose legalization might characterize her position or that of other advocates.

She was a daughter, like me, who loved her father desperately. And who supported his desire to not suffer any more.

You paint a scenario in the book that I’m going to quote: 

Let’s say I get hit by a bus on the streets of Manhattan. A bystander calls 911 and I am rushed to the nearest hospital, which happens to be Catholic. On the way, the paramedics are able to restart my heart, they are able to restart my lungs, but I was without oxygen for more than four minutes. At the hospital, a few days after I’m admitted, I’m given a feeding tube (all of which would happen at any hospital in the country). After a few weeks, let’s say I’m diagnosed as being in a [Persistent Vegetative State]. My brain stem still has some functionality, I can maybe open my eyes, I move, I sleep, and I open my mouth. But significant parts of my brain are gone, never to return. My sister drives up to the city, a copy of my advanced directive in her hand. As my medical proxy, she should, according to standard medical ethics, be able to have me removed from that feeding tube, now surgically embedded in my stomach. But if the hospital staff agree that the tube is not an undue burden (I’m so far resistant to infection) and I’m not terminal (I’m strong; my body could be kept “alive” by the feeding tube for years to come), my sister would not be able to remove the tube.

You’ve now passed this on to me—and I’m sure many others who have read your book—as a very real nightmare that could happen to any one of us or our loved ones. This is a terrifying situation—terrifying in the sense of us not having as much control over decisions made about our own bodies as we might have thought, also in the sense of burdening our family members who would likewise have very little control in that situation. 

Sorry to keep you up at night! The scenario that I’ve played out above is not common. Most of us will have long slow deaths at the ends of our lives, characterized by physical and mental decline, disability, and incapacitation. Feel better?

But seriously, yes, this scenario of being kept on a feeding tube long after our brains have left us is statistically small. But that’s a statistic, right, something that happens to other people? There’s no estimate of how many persistent vegetative state patients (like Terri Schiavo) there are in the US, and I’ve looked long and hard.

A bioethicist friend tells me there’s a facility in New Jersey that’s full of bodies on machines. It’s an alarming prospect—and it should make us all pay closer attention to how end-of-life decisions are made, to how laws about machine removal are made, to the forms that can clearly document our wishes (and their efficacy), and to conversations with our families and friends.

I’m glad that you mention “burden.” There are many who argue that being a financial, emotional or physical burden to our families and friends is an illegitimate fear. They argue that our families benefit from giving us such care, that we are better people by accepting and being a “burden.” Many of those in the disability community throw their hands up and say, wait a minute, “What about me? I have no choice but to rely on others and that’s what a compassionate society must do, care for those who need it.”

They’re absolutely right. And yet, we often use the rewards of caretaking as a blind to mask the emotional and other challenges that caretaking demands. Much as we extoll the glories of parenting to cover the trials of, say, a single working mother of two children. So one’s burden can be a very legitimate reason to fear incapacitation for some but not for others.

Do you think people who find themselves facing death without a plan are more vulnerable to unjust and unethical decision-making, and in what ways? 

People will continue to die without a plan, however we want to define “plan,” either from accidents or traumatic medical experiences or choice. But we do know from studies that discussing the medical and financial choices a patient would like makes dying easier for most. Too, they have time to talk with their families and friends. This kind of leave-taking also makes it easier for loved ones, not only because the burden of decision-making is lifted from them, but because grieving is eased by conversation.

The knowledge of a parent or spouse’s impending death doesn’t make it easy, but it can make the space for discussing and resolving a lot of emotional and pragmatic issues.

Those patients who find themselves suddenly facing a terminal diagnosis have time to acknowledge what is happening. Making clear to their doctors and loved ones what decisions they would like to be made can be a relief and can prevent unwanted treatment. Ultimately it can prevent prolonged death experiences.

But I anticipate there will always be cases when a family or patient disagrees with doctors or hospital staff over the best course of action. A good mediating board should help with these discrepancies but so will public conversation about how we are dying. By making end-of-life care more present in our daily lives, we can address the challenges patients face—and most importantly, we can reshape the laws and social systems that got us here.

You’ve pointed out that Catholic hospitals “serve a pluralistic society and are funded just like any other non-profit hospital.” What place should religion, and our religious history, have in shaping the policies and laws that govern our health care system?

One’s faith should play as much a role in life and health care decisions as one decides. The problem with Catholic hospitals is that they are deciding what options a patient is informed of and has access to, essentially making these important decisions on patients’ behalf. That’s a violation of conscience.

Even if that patient is Catholic, we all know that members of faiths deviate from their faiths’ doctrines all the time (98 percent of Catholic women use birth control during their reproductive years, for instance). So the Catholic Church’s application of current Catholic doctrine to one in six hospital beds in the country is really a violation of religious conscience—and patients’ decisions.

Of course, in this country, our moral framework is predominantly shaped by Christianity—we see it in our laws, our education, our attention to social issues, and our medicine. So we’ve long shaped our national morality around a Christian ethos. I compare aid in dying and removal of physiological support (as was central to the Terri Schiavo case) to abortion in that some Christians have shamed particular medical actions or treatments, and our laws (and our national and political rhetoric) have grown to represent that.

By claiming to be the keepers of our moral selves, the Church has made it very difficult for some to counter their soft power (faithful and compliant believers) and their hard power (religious exemptions to provide only the care they want to).

It is unjust to require that patients comply with the dictates of a faith that they may or may not ascribe to. And yes, Catholic hospitals are non-profit, funded 50 percent by state and federal funds and 50 percent by insurance. Few receive more than 3 percent of their funding from donation. And they serve a very diverse nation. Their treatment should reflect general medical practice, not religious doctrine.

It is quite possible for our laws and practices to reflect the needs of all of our citizenry. Yet we continue to favor a particular and privileged kind of morality, one infused with a nostalgia for “traditional” roles and behaviors. That’s a poisoned conflation of ideology with real medical challenges, a conflation that leaves too many of us underserved.

In some of the most compelling parts of your book, you compare aid in dying and removal of physiological support—specifically the Catholic Church’s reactions to such actions and the laws that have been shaped to govern them—not only to abortion, but also to the practice of force-feeding prison inmates who choose to protest via hunger strike.

Why is it important to see the connections among these different movements? Have these comparisons gotten you into trouble?

You know, the book has been out for about three weeks and I really anticipated a lot of controversy about some of the issues I take up, including the force-feeding of prisoners. While I did my best to assess various care and advocacy positions, I was steeling myself for some serious pushback. America magazine, a Catholic publication, printed an unfavorable review, but it was more misinformed than it was scathing.

I hope that the lack of evisceration from “pro-life” groups means that they’re reading with an open mind. And thinking about these issues as hard as I did. But I’m not holding my breath.

As I recently heard said, “the Catholic Church thinks in centuries.” They have clear positions that they won’t likely abandon any time soon… but as Catholic hospital administrators grapple with these issues in real time, I suspect there will be a growing chasm between Catholic medical practice and Catholic doctrine.

It was important to me that I put various health care or patient autonomy issues in contrast because it helped me to break down the assumptions that we make in our public dialogue. Some pretty stark questions came out of these comparisons, for instance, why is abortion still, though legal, under attack from legislators and approved by only a close majority of Americans while aid in dying is approved by about 68%? Or, with the comparison of removal of feeding tubes from patients to the force-feeding of prisoners, I was able to identify places in society where autonomy is limited not just by access but by law.

The larger ethical and moral challenges this exploration presented were compelling to me. I think because they allowed me to get behind common thought and reasoning. I got to the point where I began tracking the various uses and meanings of terms like “consent,” “choice,” “dignity,” “autonomy,” even “hope,” and the work—political, cultural, medical—that these terms do.

Your book made me think a lot about hope. You say, in a really powerful way, that people who decide on physician-assisted death aren’t necessarily people who have lost hope (a common assumption). Can you tell us how you see this changing the notion of Christian hope? 

It’s also commonly said that those who enroll in hospice are giving up hope. Or that families who decide to discontinue physiological support are giving up hope. I think there are all kinds of hope. I can hope that it won’t rain tomorrow. I can also hope that the sun won’t set tomorrow. Neither will change what tomorrow is like; yet one hope is more probable than the other.

Some kinds of hope—and doctors have long relied on this—seem to sustain patients. They hope to see their granddaughter get married or they hope to live until their birthday. But the larger false hope of defying mortality, of beating a terminal cancer, of witnessing a miracle, can be debilitating to a patient and their family. It can prevent them from stopping painful and ineffective treatment so they can be comfortable for whatever time they have left. We’re enamored with a “do everything” misunderstanding of medicine’s capabilities, as if we think doctors can cure death.

The body is and will likely remain a mystery to us, so predicting what it will do is difficult. But death in some cases is quite certain. Helping a patient to understand that is sometimes the very best medicine.

This is going to sound contrarian but I’m quite sincere: I’m not sure what Christian hope is, really. Some may look forward to a heavenly life after death, yes. But we all have our own vision of what that afterlife will be like. Some may believe that they are required to endure a particular amount of pain and suffering as they die. Christians, like other believers or non-believers, encounter dire health situations with a vast range of hopes and fears. By leavening those hopes with medical honesty and forthrightness, we allow patients to make the decisions that are best for them.

It is very possible, I now know, to be hopeful, to be in the company of family and friends, and to still acknowledge that death comes.

Ann will be at the speaking about The Good Death at the following events this month:

Mar 22 – San Francisco, CA: Booksmith, 7:30 pm. A reading with an introduction by Katy Butler, author of Knocking on Heaven’s Door. Details.

Mar 24 – Portland, OR: Powell’s Books, 7:30 pm. Introduction by Peg Sandeen, PhD, MSW, Executive Director of Death with Dignity. Details.

Mar 29 – Los Angeles, CA: Annenberg School for Communication and Journalism and The Center for Health Journalism, USC