The Death I Want
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.