The Death I Want

Photograph by Webb Chappell

I recently followed through on one of the toughest choices I have ever made: I sued the state of Massachusetts for the right to die peacefully in my sleep, aided by a prescription medication, should my suffering become too great. Let me explain.

I’m a 65-year-old doctor from Falmouth who has lived for nearly 15 years—almost a quarter of my life—with prostate cancer. As a primary care physician who sometimes treated patients with the same disease, I know all too well that my type of cancer is often painful and debilitating at the end. It spreads to tissues and bones, devastates the immune system, and slowly but steadily shuts down major organs. It can affect every aspect of a patient’s existence, from memory to the ability to walk across a room.

For a long time, I did not experience any cancer symptoms, although I suffered serious and life-changing side effects from my treatments. But last spring that started to change: I developed excruciating pain from cancerous cells that had moved into my pelvis. It was a dull agony that bore deep into the bone and regularly brought me to tears. The pain, my doctor said, confirmed our worst fears: My incurable Stage 4 metastatic prostate cancer could no longer be controlled without exposing me to even-more-toxic drugs with far worse potential side effects, such as seizures or liver failure.

All told, three different cancer treatments have failed. Doctors have removed my prostate and the cancer within it; treated me with radiation after my cancer returned; and administered multiple rounds of hormone therapy. I recently received immunotherapy to help my immune system slow the cancer’s growth. Obviously, it’s been an emotional roller-coaster ride over the past 15 years for my wife, Cathy, our three children, and me. Together we have had to reckon with the knowledge that from this point forward, any additional treatments will almost certainly be less effective and induce more of the painful and exhausting side effects that I have already withstood for so long.

I don’t know when death will arrive. It could be a few months or a few years. In all honesty, that part doesn’t really scare me anymore, and I don’t devote much time or energy dwelling on it. What does scare me, however, is the strong likelihood that I will spend my last days on Earth unable to do the normal things that make life enjoyable, losing my autonomy and dignity, being barely alive yet in severe pain, drifting in and out of a morphine-induced haze while my loved ones take shifts on a deathwatch. That is not how I want to die. Would you?

I should have the freedom to say how much suffering is too much during my final days. So this past fall, I found myself in a unique situation to do something about it: Along with fellow physician Alan Steinbach, of Woods Hole, and a national nonprofit called Compassion & Choices, I filed a lawsuit in Massachusetts Superior Court. My reading of our current state law and the state constitution is that mentally capable, terminally ill adults have the right to receive medical aid in dying. Our lawsuit is seeking to clarify the law. If we’re successful, terminally ill people would be able to get a prescription for a medication that they can then decide to take to ensure they die peacefully in their sleep should their suffering become intolerable during the last six months of their life.

This concept, of course, is not a new one. Similar medical practices are already authorized in five states—Oregon, Washington, Montana, Vermont, and California—and voters in Colorado approved a ballot measure in favor of it this past November. Yet somehow, Massachusetts, the world’s hub of medical innovation, lags on this critically important right. To date, the state has failed to explicitly authorize medical aid in dying; in 2012 a ballot initiative narrowly failed after opponents outspent proponents by a 5-to-1 margin, and legislation has repeatedly floundered despite a growing number of bill cosponsors each year. From my vantage point, not only is it immoral to forbid physicians from offering this option to terminally ill adults, it’s also bad public policy that makes one of the most difficult experiences a dying person and his or her family will ever have to work through exponentially harder.

I have been wrestling with the decision to stand up for my rights and file a lawsuit for some time now. The stakes couldn’t be any higher, knowing that it could help terminally ill people who are already suffering or one day will be—myself included. Still, I hesitated and had concerns about airing the details of my illness in such a public way. Since learning of my cancer in 2002, I had kept my diagnosis private. Many of my friends and patients did not know I was living with a terminal illness. And then there was the sound advice of my late father, an attorney who told me to avoid lawsuits at all costs. I have to trust, though, that I’m making the right decision.

Throughout my life I have been forced to confront cancer from a variety of perspectives: as a doctor, as a patient, and as a son.

When I was 40, I watched my mother die of pancreatic cancer, an ailment that kills more than 90 percent of people within five years of the initial diagnosis. During her illness, I would do doctor-y things to make her comfortable and can still hear myself saying, “Mom, do this” or “Mom, do that” to help her along as the cancer progressed. At night, she’d close her eyes and try to visualize her white blood cells overtaking the tumors and eradicating her disease. The son inside of me hoped my mother’s positive thinking might yield a miracle, but as a doctor, I knew death was imminent.

One year after my mother died, my father-in-law succumbed to sarcoma, cancer of the body’s connective tissues. Both of these close family members suffered a great deal of physical and emotional pain despite receiving the best medical care available, including hospice. I decided I did not want to die that way. The objective of medical care is to improve one’s life experience and, when possible, to abide by the individual’s treatment wishes. I had seen many patients die, but the prolonged and agonizing deaths of family members allowed me to view the issue of medical aid in dying in a new and more urgent light. Then, a mere 10 years after my mother died, I received a cancer diagnosis of my own.