Watching Myself Die

Why legal end-of-life options are essential to dying with autonomy and dignity.

Imagine that you were diagnosed with a terminal illness. Not only will it inevitably kill you, but you will suffer incredible pain as your body deteriorates to the point where you cannot function independently. There is no cure. There is very little treatment. Eventually, you will be unable to walk, talk, move, or even swallow without machines.

In that state, would you still want to live? If you answered “yes,” rest assured that the medical community will try to keep you alive as long as possible.  If you answered “no,” I have disappointing news for you. In most states, you cannot intentionally end your life before you become incapacitated, even if your death is imminent and you are in intense pain.

My mother, Dr. Karen J. Warren, was recently diagnosed with such an illness. As she confronts the truth about her medical condition, she is also confronted with legal issues around death and dying. This blog, written by her, articulates the personal, philosophical, and medical issues that arise when discussing end-of-life options.

The truth is that dying is a reality that many of us don’t want to think about, talk about, or have feelings about.  Yet, dying is a part of living.  Having the courage to face the truth about our mortality before we are in a position where we can’t communicate what we want matters. And each and every one of us should have the right to die with autonomy and dignity.

 —  Dr. Cortney S. Warren, Ph.D.

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A guest blog by Dr. Karen J. Warren, Ph.D.

On February 22, 2016, my life changed forever. I was experiencing an odd array of physical symptoms for almost sixteen years: dangerously low blood pressure, slight tremors, a sleeping disorder, frequent falling, and intense nerve pain.  Test after test. Doctor after doctor. Nothing made sense—until my phone rang.

Neurologist: “I’m sorry that I haven’t called. I have been trying to figure out how to tell you this. It’s not great news.
Me: “Please, just tell me the truth.”
Neurologist: “You have MSA. Multiple Systems Atrophy.”

 I had never heard of MSA, but I wanted to know the truth. Even if the truth was terrible. So I asked him:

– Is MSA a degenerative brain/neurological disorder?   “Yes.”
– Is MSA progressive?   “Yes.”
– Is MSA fatal?  “Yes.”
– Does MSA have a cure?  “No.
– Is there any treatment?  “No. Only medicine to try to help with the pain.”

As I listened and learned, I felt both relief and terror—I was relieved that there was a diagnosis and terrified at the reality of the disease.

My first phone call was to my 38-year-old daughter, Cortney.  I told her the little I knew about MSA. She paused and asked, “Mom, are you afraid of dying?” I didn’t hesitate in responding: “No, I am not afraid of dying. But, I am afraid of dying this way. There is no treatment. No one—no doctor, no caregiver, no loved one, not even I—can do anything to prevent the illness from progressing irreversibly.  Eventually I won’t be able to walk, talk, swallow, or move.”

This was the start of my personal journey confronting death. As a philosophy professor for nearly 40 years with an expertise in ethics, I often lectured about euthanasia. So, I am quite aware of arguments for and against various end-of-life options. But I never anticipated that my academic expertise would turn into a lived experience. Every day I watch myself deteriorate from a fatal and excruciatingly painful disease. And every day I do so knowing that I cannot legally choose to end my life before I become immobile.  Because in my home state—Minnesota—it is illegal to help someone die.

The crux of the debate about aid-in-dying options centers around medical ethics. Physicians take an oath to help their patients and “do no harm.” Many interpret this oath as requiring that patients “be kept alive at all costs.” The goal of the medical community is to make us live as long as we possibly can—even when our body would stop functioning without medical equipment and our quality of life is next-to-nothing.

Consistent with the compelling messages of Dr. Atul Gawande, I think this interpretation of “doing no harm” is harmful. For it is in direct conflict with what makes us human.  According to the philosopher Immanuel Kant, rationality, dignity, and autonomy are three attributes that distinguish humans from animals.  To be rational is to be capable of acting in accordance with moral principles.  To have dignity is to always treat oneself and others as having intrinsic worth and never simply as a means to an end.  To be autonomous (literally, “self-regulating”) is to recognize that we are free only to the extent that we act in accordance with moral principles–one’s we have freely, voluntarily and rationally chosen. Contrary to mainstream medical practice around death and dying, the basic ethical responsibility to “do no harm” requires that we treat rational persons—ourselves and others—with dignity and autonomy. This includes honoring how people choose to die when faced with illness.

Politically, legislatures throughout the country are grappling with issues raised by compassionate dying proposals. As someone who wants aid-in-dying options, it is horrifying to know that I do not have the final—perhaps any—say in how I die. Do any of us really want this for ourselves? When it comes to clear “life-and-death matters,” do we really want it to be illegal to determine our own end?

California Governor Jerry Brown, a former Jesuit seminarian, answered that question for himself when he recently passed California assisted-death legislation. Brown said, “I do not know what I would do if I were dying in prolonged and excruciating pain… But I am certain that it would be a comfort to be able to consider the options afforded by this bill. And I wouldn’t deny that right to others.”

This brings me to the main reason I am writing this blog. If I live long enough, I know how I will die. And it won’t be pretty. And if it were up to modern medicine, I will still be alive as an immobile shell of a human. My quality of life—including my dignity and autonomy—will be long gone. But, in most states, there is no legal way to die with my dignity and autonomy intact. What I want requires legislation that provides legal end-of-life options—options—for people with fatal illnesses and excruciating pain who want to die before becoming incapacitated

Probably none of you want to think about your own death. Or the death of those you love. And, as so articulately outlined by my daughter in her book, all of us lie to ourselves in characteristic ways. It is likely that many of you tell yourselves, “It would never happen to me—I won’t be diagnosed with a disease that will slowly kill me.” I am here to encourage you to confront the truth. You are going to die. So is everyone you love. So think about it now. Think about whether you want a voice and a choice. And, if you are like me and believe that it is a basic human right to die with ones dignity and autonomy preserved, please contact your legislators. Organizations like Compassion & Choices exist to fight for your rights. This is for you, for me, and for everyone you love for whom having their dignity and autonomy honored is the most important end-of-life right we have.

 —  Dr. Karen J. Warren, Ph.D.