The Death I Want

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the death i want roger kligler

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.

I am not the only one who has been through this nightmarish experience of watching a loved one die. It’s likely that you or someone you know has stood by the side of a parent, a grandparent, a partner, a sibling, or a close friend as a fatal illness worked its course. I’ve counseled countless people facing unpleasant deaths, including their families and friends. Unfortunately, having worked as a doctor in Massachusetts for more than 30 years, I know that our options for end-stage, terminally ill patients are sometimes needlessly limited and insufficient.

One available approach is palliative sedation, sometimes called terminal sedation. I have helped people die using this process, which involves medicating a patient into unconsciousness to alleviate suffering until death occurs hours or sometimes days later. This is not an optimal situation in many cases, and in my experience there is often significant unnecessary suffering for the patient beforehand, as well as for the family.

In other instances, I have removed life-sustaining treatment, such as ventilators, from people, and even agreed to it for my father after he became brain-dead. I also have had to decide when to stop resuscitating dying patients because it was a futile exercise. I have helped patients, as well as my mother, decide whether they wanted resuscitation efforts in the event of cardiac or respiratory failure. Unlike on television, few people return to their usual state of health after resuscitation.

Perhaps hardest of all was telling patients that I couldn’t help them die the way they wanted. On several occasions, terminally ill adults who were suffering asked me to provide them with medical aid in dying. Other physicians told me they have gotten the same requests. If I lived in a state where medical aid in dying is clearly authorized, I would write them a prescription for a medication that would put them to sleep and, within 30 minutes or so, shut down their respiratory system. Each time I received these requests, it seemed cruel to deny them, because doing so conflicted with my personal morals and professional ethics. Time and again, though, I put my desire to avoid prison and not lose my medical license above these patients’ medical needs. These memories still haunt me, and with good reason: They put my needs, as the doctor, ahead of the needs of the patient. It should be the other way around.

Consider the case of a man I recently counseled. I’ll call him Sam. He had terminal metastatic prostate cancer and was enrolled in hospice (which improves both quality of life and life expectancy compared with usual medical care). He was in pain. Because Massachusetts has not clearly authorized medical aid in dying, he moved to California, a state that authorized the practice in 2015. When he arrived in California, though, there was more red tape and more logistical challenges than he anticipated. To qualify for medical aid in dying, a terminally ill patient must establish residency, find a medical team (a process that takes weeks), and do it all while succumbing to cancer. Ultimately, Sam returned from California to die at his home in Massachusetts. He spent his final days in a great deal of discomfort. It’s wrong that we allow this intolerable situation to occur, especially in a state that has achieved universal healthcare and led the way on so many other important social issues.

I am not alone in my frustration. Seven out of 10 Massachusetts voters, including 64 percent of Catholics, support this end-of-life option, according to a 2014 Purple Strategies poll. I fully understand and appreciate that medical aid in dying could violate someone’s conscience or religious beliefs. In states where medical aid in dying is clearly authorized, medical personnel and pharmacists who do not support the practice do not have to participate. But freedom of religion cuts both ways. I respect their personal beliefs and right to practice them; I hope that they respect mine.

 

Time is not on my side. Terminally ill people like me cannot wait several more years and hope that this end-of-life care issue lands on a ballot and passes, nor can we wait for the legislature to act. I want this option to be clearly authorized in Massachusetts in my lifetime—for me, for you, for everyone.

While there’s no guarantee that we will win the lawsuit, I am hopeful for a variety of reasons. In Massachusetts, there is no statute that specifically prohibits physicians from providing the option of medical aid in dying, and the courts here recognize a fundamental right of citizens to make end-of-life care decisions, including the right to refuse life-sustaining treatment. At the end of the day, is there really any meaningful distinction between the withdrawal of life-sustaining treatment or nutrition to a terminally ill person, and a physician providing a prescription medicine that would afford comfort and a level of control in dying?

Even if we do prevail, it’s still too early for me to say whether I would actually take the medication to help me die—though I know I would find immediate peace of mind if I had the option. Nobody except the person who is dying can understand how painful it is to him or her. And in practice, only a small percentage of people need to use medical aid in dying. Between 1998 and 2015 in Oregon, more than 90 percent of the terminally ill adults who received the prescription were enrolled in hospice. More than one-third of these people did not take the medication. Still, nearly all of them reported great relief after obtaining the medication, knowing they could take it if their suffering became too great.

These terminally ill people did not want to die. Like me, they would have given anything to live. They just wanted the option of a graceful exit. We should all have that same right.

Source URL: https://www.bostonmagazine.com/health/2017/01/15/the-death-i-want-roger-kligler/