lifeline

Why it’s so hard to give dying patients what they really want

December 8, 2013
December 8, 2013

Just a few hours before his father died last month, cartoonist Scott Adams posted  a blog entry railing against the medical establishment.  “If my dad were a cat,” the creator of Dilbert wrote, “we would have put him to sleep long ago.”  Adams’ 86-year-old father had lost 98% of his mind—and all of his dignity. “If you have acted, or plan to act, in a way that keeps physician-assisted suicide illegal, I see you as an accomplice in torturing my father, and perhaps me as well someday. I want you to die a painful death, and soon,” Adams concludes.

Physician-assisted suicide, in which patients take lethal drugs prescribed by doctors, differs from active euthanasia, in which doctors administer lethal drugs.  The two processes comprise the emotional core of all end-of-life legislation. One or the other is now sanctioned in the European countries of Switzerland, Holland, Belgium, and Luxembourg and in the US states of Oregon, Washington, and Vermont.  Meanwhile, in Canada, the subject is again stirring passions, thanks to a well-known physician’s plea on YouTube.

But this time, the doctor is the patient. The seven-minute YouTube video features Dr. Donald Low, revered for saving Toronto from the scourge of SARS a decade ago. Take a look:

In February, Low learned that he had a rare, untreatable tumor strategically situated near the cranial nerves of the brain. His left eyelid taped up to counter the “droop” already evident on the other side of his face, Low calmly explains that, while not yet fully paralyzed, he knows that uncontrollable pain as well as difficulties with swallowing and breathing will soon ambush him. Amid endearing scenes of life before the diagnosis—a kiss from his wife, an “aha moment” with collaborators, a teaching moment with a grandchild—Low laments that his government will not permit him to decide how to die.  Wrenchingly, he stares at the camera and invites those opposed to that option to live in his body for 24 hours.  “I think they would change their opinion,” he declares with subdued confidence.

“Bill 52,” as the law to legalize euthanasia is known, already passed a second reading in Canada’s parliament; two-thirds of Canadians support it, according to one survey. It all comes too late for Low, who died in September.

The issue is not so much about doctors administering death as it is about patients having options. Indeed, Seattle’s world-renowned Fred Hutchinson Cancer Center implemented a Death with Dignity program for patients who fear loss of autonomy and symptoms that cannot be controlled. Authors of a 2013 New England Journal of Medicine article conclude that “…patients and families were grateful to receive the lethal prescription whether it was used or not.”

Critics, however, contend that the Seattle investigators unfairly co-opt the term “dignity” for their own agenda and, in so doing, create a rhetorical smokescreen. Although numbers of patients choosing to end their lives with physician-prescribed doses of strong sedatives steadily increase, the satisfaction of laypeople might not be the best index of success—they are rarely asked to directly assist with patient suicide.  Dr. William Toffler, professor of family medicine at the Oregon Health and Sciences University, founded a large non-profit organization opposing assisted suicide. He reminds colleagues that the central tenet of the Hippocratic tradition is to do no harm.  “That’s the solid ground we stood on for centuries,” Toffler informs the National Post readership before continuing, “We should be helping people live well with dignity and not helping them to die.”

End-of-life legislation is a prism that distinguishes proponents, who emphasize autonomy, from opponents, who underscore the sanctity of life while deriding their adversaries as “sanctifiers of autonomy.”  Bill 52 opponents frequently cite two paradoxical cases.

A hypothetical scenario: A serial murderer is sentenced to life imprisonment because society deems the death penalty to be cruel and unusual punishment.  The serial murderer screams from a jail cell that the psychological pain engendered by the court’s verdict is unbearable and meets eligibility criteria for euthanasia.

Another real-life case: Sue Rodriguez, a 42-year-old British Columbia woman, was debilitated by Lou Gehrig’s Disease.” Absent Bill 52, Rodriguez argued that she is discriminated against as a disabled person because she is deprived of the right to commit suicide, which she is physically unable to pursue without assistance from a medical doctor.

There are also the “slippery slope” arguments. Retirees who don’t want to burden their children by the dissonance that awaits members of the sandwich generation. The clinically depressed. Individuals suffering from botched cosmetic surgery. And others who receive results (which may not even be accurate) from DNA testing that predict, sometime in the future, they will contract a horrific genetic disease. Would it be tragic to deny physician-assisted suicide to these people, or in permitting it, are we abusing end-of-life legislation?

Many physicians feel ambivalent about such legislation. Some seem unaware of their stances vis-à-vis their own lives. In a study that that I published recently in the American Journal of Clinical Oncology (pdf), less than a third of Israeli physicians reported having conducted conversations with terminal patients and their family members for the purpose of determining how values and priorities should be translated into actions.  While most of the doctors cited time constraints, nearly half acknowledged that they, themselves, had not carefully thought through the issues and were, therefore, uncomfortable with the process.

A good gauge of physician attitudes might be how doctors assess data from Oregon, the state with the longest-standing American end-of-life legislation.  Since 1997, there has been an incremental rise (2-5 per annum) in the number of Oregonians seeking to end their lives. Last year, the annual total stood at all of 114. Do physicians regard these numbers as being unacceptably high or, would they agree with one peer who summarized, “these laws are rarely used but provide immense comfort to individuals who are granted the gift of options at the end of life.”

A few days after the death of his dad, Scott Adams was kind enough to correspond with me by email. He expressed relief that his father was no longer suffering, but he seemed no less angry about the authorities’ restrictions. “For me,” Adams maintained, “it boils down to whether government should have veto rights over my personal healthcare choices. Everything else is a detail or a distraction.”

We welcome your comments at ideas@qz.com. 

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