Nancy Cruzan's Gravestone

Nancy Cruzan’s Gravestone

By Ann Neumann

And he said, I may not return with thee, nor go in with thee: neither will I eat bread nor drink water with thee in this place. 1 Kings 13:16 KJV

“How do you want to die?” has got to be the least anticipated question I’ve ever been asked at a job interview–and admittedly, I have an uncommonly large sample set. I was trying to land a marketing manager position at a media company based in Boston when my interviewer lobbed it at me. My future death was not something I had considered before. Certainly, there was no wrong answer and I did ultimately get the job, but I probably should have taken a beat or two to consider the implications of my answer. “A long fall,” I said, imagining the slip, the recognition in free-fall that this is it, the instant death, painless. Not a bad way to go, I thought at the time.

Years later, while deep into research for a book about dying, I came across a story about geriatrician Dr. Joanne Lynn that goes something like this: Dr. Lynn often opens her talks by asking the assembled audience how they would like to die.1 Raise your hand if you want to die of cancer, she says. No hands. If you want to die of heart failure. A hand or two. Alright, she says, that means that the rest of you want to die of old age, a long, slow and agonizing slide into increasing discomfort, mental and physical frailty, disability, dementia.

This anecdote about Dr. Lynn and my subsequent research made me revise my choice of death by “long fall.” Think about it: No chance to say goodbye to loved ones, to right certain wrongs you’ve let fester, to mend broken relationships, to cross something really important off your bucket list. Dr. Lynn takes all the romance out of dying in old age, the rocking chair on the porch dusted with a sunset glow. Of course, many of us will never get a chance to decide how we die. But increasingly, “How do I want to die?” is a question that Americans are asking and demanding to answer for themselves.

There are a number of well-documented reasons for this. Americans are living longer but we’re also dying longer. Between 2000 and 2050, the number of Americans over 65 is expected to increase by 135%. The number of those over 85 will increase by 350%.2 Our greater number of twilight years means a pronounced chance of living with a debilitating disease–which means more invasive medical treatment for those with fewer and fewer years to live, a long and steady loss of quality of life (however individually defined), more disability, more care-taking needs, more personal and social expense.

When we think of the scariest diseases awaiting us after the age of 65, other than Dr. Lynn’s big three, we tend to think of the ones that affect our mental abilities, including Alzheimer’s and dementia. One out of nine Americans over 65 has Alzheimer’s.3 That number rises to one in three for those over 85. Between 2000 and 2010 alone, the number of people who died from Alzheimer’s increased by 68%.4 It’s no surprise then that so many Baby Boomers accustomed to control are asking: How can I get out quick? How can I make my own medical decisions and say “goodbye” to my loved ones before I lose my mind?

Americans are living longer but we’re also dying longer.

Since the 1970s, medical ethics and the courts have well established the right of patients to informed consent, a concept that was enshrined by the case of Nancy Cruzan. Cruzan was in a persistent vegetative state when her family won the ability to remove her feeding tube. They were able to prove that Nancy would have wanted it removed. Informed consent is the autonomous right of a person to be told what all of their medical options are and their ability to decide procedures they do or don’t want–even if that decision means certain death.

Autonomy, then, is necessarily contingent on competence or on legal methods that anticipate incompetence and outline medical decisions based on a range of scenarios. Most often, advanced directives, living wills, and medical proxies are completed with the hope of not continuing treatment, of ending one’s physical existence after one’s mental existence has fled.

Sometimes, however, desperate patients have no medical treatments, like Cruzan’s feeding tube, to remove. Getting out of those painful last, lost years is a dire concern for Alzheimer’s patients and their families. Write Paul T. Menzel and M. Colette Chandler-Cramer in the latest issue of The Hastings Center Report (May-June 2014):

For people who have dementia and are no longer competent… control over the end of life is much less extensive. They may have written a clear advance directive for refusing life-saving care in specified circumstances yet subsequently find themselves living for years in severe dementia with no need for life-saving care that could be refused.

All these factors are leading to an increased interest in VSED, Voluntarily Stopping Eating and Drinking. While VSED can be uncomfortable-to-painful for patients if they are not supervised by medical staff, it can be an easy way to end one’s life. Usually after 5 to 20 days, patients die of dehydration. If you know you’re at the tail-end of your mental competence, if you know that soon Alzheimer’s will take away what you consider you, if you have no more interest in sticking around while your family wipes your chin, while they become strangers to you, perhaps, patients are beginning to say, VSED isn’t a bad way to go.

In 2010 lawyers Thaddeus Mason Pope and Lindsey E. Anderson wrote in “Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life,” that VSED is legal but untested in the courts. They suggest that VSED should be commonly considered as an “exit option” for a patient who has outlived what he or she considers to be a meaningful quality of life. They write that “the legality of VSED remains uncertain in the United States. Consequently, it remains an underutilized and almost underground treatment mechanism. Moreover, the dearth of legal direction includes not only primary but also secondary authority.” What they mean is that VSED hasn’t yet been adequately addressed by the courts or by other secondary authorities, like the healthcare industry.

Pope and Anderson aren’t the only ones having this discussion. In 2011 Compassion & Choices, the nation’s largest aid in dying advocacy group, issued a booklet that outlines VSED, listing it as one of several ways that patients can hasten their deaths. And the current issue of The Hastings Center Report is chock full with articles that examine VSED and dementia.

This increased attention on VSED has, of course, caught the attention of “pro-life” groups who also advocate for an end to abortion and aid in dying. Their commentary highlights a number of issues that are prominent in the discussion of VSED.

The Patients Rights Council, which opposes a host of legal and accepted end of life rights for patients, including aid in dying and VSED, published a paper last year that targets VSED by categorizing it as suicide, blaming the media for aggrandizing death by VSED, by proclaiming it as a painful way to die, and by expressing concern that broader public discussion about VSED will lead to elder abuse and coercion.

In January, conservative (and anti-aid in dying) columnist Wesley J. Smith asked another question: “I understand that doctors and nurses may not be able to force feed in such a case, or put in a feeding tube against the patient’s desires. But should they help make it easier? Doesn’t this make them complicit?” Smith implies that VSED is not like any other medical decision a patient is entitled to make–and an attending doctor is entitled to comply with while keeping the patient comfortable. Complicit in what? would be my retort.

VSED’s challenges to doctors are evident in commentary by Timothy W. Kirk that follows a case study, “A Fading Decision.” The article, written by Kirk and two others, Ross Fewing and Alan Meisel, appears in the new Hastings Center Report and concerns a woman, Mrs. F, who decides to stop eating and drinking but then enters a new phase of dementia that makes her forget that wish. Her family and caregivers struggle to know what to do when she asks for water and food. Kirk writes, “Voluntary oral feeding is not medical treatment that requires the informed consent of a patient with formal decision-making capacity.”

Kirk’s is a point worth considering in Mrs. F’s case and one that echoes contentions other groups have legally grappled with since the 1970s. While the courts have consistently considered intubation, feeding and hydrating with an inserted tube (whether in the nose or surgically, through the stomach), to be a medical procedure subject to informed consent principles, the Catholic Church and its allies refuse to consider nutrition and hydration anything other than “comfort care,” medical or non-medical care that must ethically be provided to all in order to relieve pain and keep a patient comfortable.

Conflating intubation with VSED methods is almost like calling an apple an orange, I acknowledge. And of course every end of life situation requires a unique decision-making process. Yet, as the case of Mrs. F shows, provision or denial/removal of food and water is again and again an area of care that is hard to generalize.

The power of food in our culture–from the farm table midday meals of my ancestors to the bee-keeping, fish co-op members of my adopted Brooklyn–is undeniable. What we eat at mealtime, where it comes from, and whom we share it with determines who we are and what social and cultural groups we identify with. What we eat defines us; it makes us human. “Feed a cold,” we say, indicating that eating well is the best way to stay healthy. “Break bread,” we say, to denote kinship, cooperation, reconciliation. “Manga,” we say, like mothers all across the globe who show they love us by feeding us. Eating is both an interaction with food (culture, production, connoisseurship) and our communities; a natural and necessary activity imbued with ritual, sacred meaning, social status, identity. “He won’t eat,” dozens of family members have told me as they hovered over their dying loved ones, as if the patient has given up, with the recognition that their loved one is slipping away from life when they don’t eat. To give up eating is to many a denial of the self rather than the assertion of the self that proponents of VSED claim it to be.

I’ve written often about the right of hunger striking prisoners to not be force-fed5; like Alzheimer’s patients, such prisoners aren’t terminal (meaning six months or less to live) or suicidal (in this context, meaning mentally incompetent to make rational decisions). But they have decided that their pain and poor quality of life make life no longer worth living. Hunger strikers claim that stopping eating is an exercise of their first amendment rights–their only remaining means of protest. Those who choose VSED have determined that their pain, their days, their bodies are their own. What right–and I don’t mean this rhetorically–do we have as a society to tell people how they must die? If at all possible, I think I’d like to make that very decision for myself. If you could, wouldn’t you?

The long fall is no longer an appealing way to die to me. Let’s just say, when death is immanent, there are a few people I would like to see one last time, a few hands I want to touch. Maybe even, like my Dad who died of cancer in 2005, I’d like a last chance to eat ham loaf made from my grandmother’s recipe. I’d like to look my nieces in the eye and tell them how amazing they are. I wouldn’t mind one last good laugh with my beloved sister. But I also know that few of us get to choose our death. To be able to do so would be a rare privilege–perhaps one that few of us could say “no” to.

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1. Paula Span at The New York Times’ Old Age Blog retells this story here: http://newoldage.blogs.nytimes.com/2008/07/08/how-many-of-you-expect-to-die/?_php=true&_type=blogs&_r=0

2. From the International Journal of Epidemiology, 2002: http://ije.oxfordjournals.org/content/31/4/776.full

3. “Alzheimer’s disease is the most common type of dementia.‘Dementia’ is an umbrella term describing a variety of diseases and conditions that develop when nerve cells in the brain (called neurons) die or no longer function normally. The death or malfunction of neurons causes changes in one’s memory, behavior and ability to think clearly. In Alzheimer’s disease, these brain changes eventually impair an individual’s ability to carry out such basic bodily functions as walking and swallowing. Alzheimer’s disease is ultimately fatal.” For this and subsequent information on Alzheimer’s, see “2013 Alzheimer’s Disease Facts and Figures” at http://www.alz.org/downloads/facts_figures_2013.pdf

4. Liz Seegert summarizes the “2014 Alzheimer’s disease facts and figures” at the Association of Health Care Journalists Covering Health blog: http://healthjournalism.org/blog/2014/05/incidence-of-alzheimers-disease-continues-to-rise-as-boomers-age/

5.http://www.guernicamag.com/features/the-longest-hunger-strike/ and http://www.nylslawreview.com/wordpress/wp-content/uploads/2014/01/NYLS_Law_Review.Volume-58_Issue-2_Neumann-article.pdf

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“The Patient Body” is a monthly column about the intersection of religion and medicine. Prior columns can be read here:

Wakeful Awareness

Faith, a Chronic Condition

A Special Sustaining Power

Your Ethical and Religious Directives

Hospitals and the Pretense of Charity

A Closely Held Business

What’s a Kidney Worth

An Irresistible Force

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Ann Neumann is a Visiting Scholar at the Center for Religion and Media at New York University and contributing editor at The Revealer and Guernica magazine. Neumann‘s book about a good death, SITTING VIGIL, will be published by Beacon Press in 2015.