Prelude

One February night, my father and I were waiting at a commuter train station in the suburb where he lived. We were waiting to pick up a friend coming to visit, and though we normally waited outside, the bitter winter winds and piled snowdrifts kept us in the warmth of the car. My father had been following the Terri Schiavo case for weeks, and though I knew the lawyer in him was enmeshed in the case, the father in him had stayed quiet. As we waited in the small parking lot near the tracks, my father turned to me. He didn’t mention Schiavo’s name, but I knew her story was there in the care with us. “Just so you know, if anything ever happens to me, and my ability to think—my ability to reason is gone, that means I’m gone.” I tried to respond, but the sound of the train horn interrupted. We sat in silence as the train barreled past us, and he got out to greet our visitor, leaving the conversation somewhere on the floor of the car.

As human beings, so much of who and what we are is tied to our minds.

 Introduction

In August, Nathan Hershey, with the help of Alicia Ni’Tracy, wrote an essay detailing his life with Alzheimer’s disease “I need this help around the clock, to know when and how to reach the dining room in my memory-care assisted-living building, to shower safely…to take my medication and to continue writing—including this essay.” Hershey’s reflection on his life, his illness, and his struggles is a rare look at the daily experiences of someone who is suffering from Alzheimer’s disease. He writes about memory losses and lapses, about moments of lucidity, about the dread of losing more of himself to the disease.

Hershey also speaks candidly about his desire to die, to use physician-assisted suicide to take his own life. However, Hershey is aware that “Even if my physical health declines to the extent that I become likely to die in the following six months, due to my brain injuries and disease, I will never pass the cognitive requirements to qualify for aid in dying in any state.”

Hershey’s experiences point to a particularly contentious issue in bioethics: The right to die for individuals affected by Alzheimer’s disease and other forms of dementia.

Physician Assisted Suicide and Euthanasia

Physician-assisted suicide for patients with dementia is a controversial issue, even amongst proponents of the practice. A candidate for physician-assisted suicide must meet certain criteria in order to proceed through the process: The patient must be diagnosed with a terminal disease; the patient must have less than 6 months to live; and the patient must be competent to make medical decisions about herself.

However, patients with Alzheimer’s disease or other forms of dementia are ineligible for physician-assisted suicide as the laws are currently written. At the time when patients are competent to make the decision to end their lives, they often have significantly longer than 6 months left to live. By the time they have less than 6 months to live, they are often no longer competent by legal standards.

This has led some to argue that euthanasia should be legalized as well. Euthanasia—in the context of medical ethics—lacks some of the physician-assisted suicide’s requirements. Specifically, euthanasia can be performed at any time during a patient’s lifecycle to minimize or avoid intractable suffering.

Euthanasia is viewed by many who support the right to die as a necessary companion to physician-assisted suicide because it would allow patients diagnosed with diseases such as Alzheimer’s to end their lives before their conditions progressed to a point of non-competency. Specifically, proponents of the practice refer to it as Active Voluntary Euthanasia, which is legal in Belgium, Luxembourg, and the Netherlands.

A Contentious History and Tumultuous Present

The realities of this debate became viscerally real to millions of Americans in 1990, when Dr. Jack Kevorkian assisted a 54-year-old woman named Janet Adkins with self-termination. Adkins decided to end her life when she received a probable Alzheimer’s diagnosis. The Alzheimer’s Association mentions Adkins specifically in their report on suicide and assisted-suicide as ethical issues in the Alzheimer’s community “We are very saddened by the tragic case of Janet Adkins. We believe that hers was a very personal decision; however, we must also affirm the right to dignity and life for every Alzheimer patient and cannot condone suicide.”

The Alzheimer’s Foundation of America estimates that over 5 million Americans have Alzheimer’s disease, and that the prevalence of the disease will increase as the population ages. The American Administration on Aging estimates that by 2030, nearly 20% of the American population will be over the age of 65. And while innovative solutions are being proposed to reform foundational social structures of American society to better integrate older populations, as the number of individuals over the age of 65 rises, so too will the incidents of Alzheimer’s and dementia.

Where, then, does this leave us? Undoubtedly, we need to think critically about both the medical and social infrastructures of care, especially for our most vulnerable populations. Additionally, research directed at finding a cure for Alzheimer’s and dementia must continue if progress is to be made fighting this disease. Care facilities—and professionals—must be expanded, and medical institutions must focus on delivering quality care to both patients and their families, care that respects each patient’s wishes and humanity. This much is certain, and non-controversial.

What is less certain is what role, if any, physician-assisted suicide and euthanasia can and should play as an option for patients diagnosed with Alzheimer’s and dementia. Even amongst proponents of physician-assisted suicide (myself included), there is something intuitively different about dementia cases. Where are we to draw the line of competency? How do we know that decisions made are truly legitimate expressions of someone’s will? And how do we ensure that physician-assisted suicide will not be misused, or abused, either by patients or by others?

Conclusion

What Hershey’s story—and what the millions of untold stories like his—illustrate is not that we need to immediately legalize euthanasia, but that we need to think critically about how we define care for our aging population. How do we ensure that our aging population, particularly its most vulnerable members, are afforded both protection and autonomy? If physician-assisted suicide is legalized broadly, then do we have an obligation to allow for euthanasia as well, or for provisions that grant patients in the early stages of dementia access to this option? These are questions with no easy answers.

Which brings me back to my father, to that unanswered declaration in the car. The debate about assisted-suicide—both specifically to this case and broadly—is a debate about how we define our humanity. Is the loss of the cognitions that make us “us” the real end, or is it something else? How does agency define humanity? How do we define and truly live our humanity? And most importantly, how do we support that endeavor in others, throughout their lifetimes and ours?

Meghan Guidry (Harvard University)
Meghan is a Masters of Divinity candidate at Harvard Divinity School, where she studies bioethics, humanist philosophy, end-of-life care, and health policy. Her research focuses on the disconnection between ethics and technologies, assisted suicide, and other cheery subjects. Her interests include creative writing, swimming, language philosophy, medical sociology, and coffee. You can check out her books at Empty City Press, find her on Facebook, and follow her on Twitter @monocrescent.