When my husband was diagnosed with metastatic cancer in February, he asked physicians whether they would provide him the means to end his life quickly if he chose. They either evaded the question or said they were unable to comply. They then hastened to assure him that he would not suffer.
But that was not his question. My husband, Arnold S. Relman, was a distinguished physician who had been chairman of the department of medicine at the University of Pennsylvania and editor in chief of the New England Journal of Medicine; he knew very well what lay ahead of him. His concern was not so much with suffering as with having his mind affected by the drugs he would need to prevent suffering. He was asking for the option of ending his life in the way he chose.
In June, he died at home in Massachusetts, with hospice care, but not in the way he wanted. I see no reason he should have been denied that final measure of control.
The case of Brittany Maynard, however, may finally signal a shift in this debate. Whereas hastening an inevitable death was once regarded almost exclusively as a medical issue, we are beginning to focus on what patients want, on their right to self-determination. And people are increasingly asking why anyone — the state, the medical profession, religious leaders — would presume to tell someone else that they must continue to die by inches, against their will.
Maynard, the 29-year-old with incurable brain cancer, is the new face of the movement to give dying patients the choice to end their lives faster and more humanely. Her youth and attractiveness have helped make her a national media story. She also represents, and seems to have had a particular impact on, a generation that tends to support the rights of individuals to make personal choices, in matters such as same-sex marriage and marijuana use.
When Maynard learned she had a fatal disease that would rob her of control over her body and mind, she and her husband decided to move from California to Oregon — one of five states where she could legally obtain a prescription for a barbiturate to end her life peacefully before the cancer destroyed who she was. This was not a matter of choosing death over life. Indeed, Maynard and many other people prefer the term "assisted dying" to "assisted suicide." Oregon's Death With Dignity law applies only to patients who are close to death, and Maynard was told in April that she had six months to live. The question was simply how she would die.
The Supreme Court has twice maintained that that's a medical question and as such should be left to the states, which regulate medical practice. The medical profession, meanwhile, has been among the main obstacles to more laws like Oregon's. The American Medical Association's official policy is that physician-assisted suicide is "fundamentally incompatible with the physician's role as healer." Sixty-five percent of New England Journal of Medicine readers who responded to an online poll last year were against it. One possible explanation for this opposition, particularly among palliative care specialists, is that assisted dying underscores their limitations in dealing with suffering at the end of life.
But that stance puts the focus in the wrong place. This is not primarily about physicians or their self-image; it's about patients — specifically patients for whom healing is no longer possible. We give patients the right to hasten their deaths by refusing dialysis, mechanical ventilation, antibiotics or any other life-sustaining treatment. Why deny them what is essentially the same choice, especially since it is limited to terminally ill patients? Moreover, there is no requirement in any state for physicians to participate if they do not wish to do so. The laws simply provide one more choice for physicians and patients as they deal with terminal illness.
In 2012, I was among the lead petitioners to put a Death With Dignity law on the ballot in Massachusetts, and I campaigned hard for its passage. Until a month before the election, polls showed overwhelming support. But in the final weeks, the Catholic Church, both nationally and within the state, began pouring money into TV ads implying that people would be coerced into killing themselves, and physicians and pharmacists would be required to help them. After opponents outspent proponents by about five to one, the referendum lost.
However, as people learn more about the real impact of these laws, and take notice of stories like Maynard's, it will become harder to sway public opinion like that.
We know, for instance, that the law in Oregon is rarely used. From 1998 through 2013, it accounted for 752 deaths — 71 last year, or one out of every 500 deaths in the state. Most of these patients were suffering from cancer, and the prognosis was clear. Far from being disadvantaged — a concern when the law was first proposed — they were relatively affluent, well-educated and well-insured. Nearly all were receiving hospice care, and nearly all died at home.
One common objection to these laws is that patients who request an earlier death may simply be depressed. It's extremely difficult to diagnose depression in dying patients because the symptoms overlap almost entirely with those of terminal illness. But studies from Oregon — which requires referral for counseling if a physician believes that depression is impairing a patient's judgment — show that depression is no more common in patients who request assisted dying than in other terminally ill patients. And a recent study showed that dying patients who receive a prescription for lethal medication become less depressed and anxious than those who don't.
Of great importance, about a third of those in Oregon who obtained prescriptions didn't end up ingesting any lethal medications.
Many patients say that just having a prescription at hand provides peace of mind and a sense of control. "Now that I've had the prescription filled and it's in my possession, I have experienced a tremendous sense of relief," Maynard wrote in a recent op-ed for CNN. Although she had planned her death for Nov. 1, on Wednesday she released a video saying, "I still feel good enough, and I still have enough joy, and I still laugh and smile with my family and friends enough that it doesn't seem like the right time."
Maynard's imminent death (whether she takes the medication or not) is tragic, but in making her story public with such grace and dignity, she has greatly helped future patients who want the same choice.
Marcia Angell is a senior lecturer in social medicine at Harvard Medical School and a former editor in chief of the New England Journal of Medicine.