Despite Sweeping Aid-In-Dying Law, Few Will Have That Option

The "death-with-dignity" movement took a giant step forward this week, with 38 million people coming under its umbrella in a single swoop when California Gov. Jerry Brown signed the End of Life Option Act on Monday.

But the law still leaves out a wide range of people who might want to be covered: people with progressive debilitating diseases that don't have an obvious six-months-to-live prognosis and people with dementia, the fastest-growing health threat in the U.S. That's also true of similar laws in Oregon, Washington, Montana and Vermont.

And there might be no good way around this.

These restrictions might be necessary at this point in the history of aid in dying in this country, according to Judith Schwarz of the advocacy group End of Life Choices New York. "Opponents have many fears that such laws will be misapplied to the disenfranchised," she wrote in an email, and it's important to guarantee that for these groups — the poor, the elderly, the isolated — the "right to die" doesn't somehow morph into the duty to die "for the sake of others."

Still, there's a problem with limiting the death-with-dignity option only to those with a prognosis of fewer than six months. For one thing, prognosis is difficult, and studies show that doctors are actually overoptimistic in their assessment of how long their patients have to live. "Some doctors may wish to be more compassionate and not be as specific," Janis Landis, president of the Final Exit Network, wrote in an email, "and ironically thus deny the patient the certification that is required."

And then there are the conditions that are completely unpredictable, not only in terms of life expectancy but in terms of how, when and in what order functions will be lost. This includes progressive neurological diseases like multiple sclerosis and ALS, where those who want to avoid the most debilitating final stages might end their lives prematurely, afraid that their ability to swallow a pill might disappear without warning.

"Fear of this actually drives some individuals to act early, while they can still procure the equipment they need," Landis wrote. To her, it seems especially harsh "to force such a cruel choice on an individual already suffering so greatly."

As fraught as it is, though, the requirement that a person be able to swallow lethal medication on his own is an important safeguard, according to Mickey MacIntyre, the chief strategic officer of Compassion & Choices. "This self-administration requirement is a critical distinction between medical aid in dying and euthanasia," he wrote in an email.

"Unlike medical aid in dying, euthanasia requires a healthcare professional or someone else, not the individual, to administer the medication," he added, "So the individual loses control of the decision."

MacIntyre pointed out that people often change their minds at the last minute, and have every right to do so. In Oregon, he noted, about one-third of the people who obtained lethal drugs through the state's death-with-dignity program since 1998 ultimately decided not to take them.

This seems to be a distinctly American quandary, though. In other countries, such as Belgium and the Netherlands, there are also safeguards written into their right-to-die laws, but they are broader and more inclusive.

"The European safeguard is 'intolerable suffering,' " said Margaret Pabst Battin, a bioethicist at the University of Utah. "It's not defined in terms of the time until death, and it does include people with ALS or other conditions that wouldn't fall under our laws, which don't say anything about suffering."

Peggy Battin is a bioethicist whose husband faced the question after he was paralyzed in a bike accident.

Dese'Rae L. Stage/Courtesy of University of Utah

Battin experienced the complexities of deciding when suffering becomes unbearable in caring for her husband, Brooke Hopkins, who was paralyzed from the shoulders down in a 2008 bicycle crash and lived for five more years, until he finally decided in 2013 to withdraw the machinery keeping him alive.

Earlier this year, the Supreme Court of Canada used European-style language upholding the right to die for anyone with "a grievous and irremediable medical condition ... that causes enduring suffering that is intolerable."

A death-with-dignity bill introduced in Battin's own state tried to broaden the safeguards to include people with a wider range of illnesses. On the phone with me, Battin read aloud from the Utah Death with Dignity Act, introduced by Rep. Rebecca Chavez-Houk, which could apply to someone with an "intractable and unbearable illness," defined as "bodily disorder that cannot be cured or successfully palliated, and that causes such severe suffering that a patient prefers death." She said such broad language would no doubt be changed if the bill works its way through the state Legislature, as has happened elsewhere.

But people with Alzheimer's disease and other forms of dementia are beyond the scope of almost all these laws.

Schwarz said that maybe, very far in the future, there might be some way to cover dementia, but it's "so complicated" that she doesn't see it happening anytime soon. How, for instance, do you write legislation to deal with the question of personhood, which alters as the disease progresses? Is the demented individual — perhaps someone relatively content in her diminishment — "the same as the individual who so FIRMLY REQUESTED/DEMANDED lethal meds at a certain point in their future demented state?" Schwarz wondered. "And who are you going to get to administer lethal meds under such circumstances?"

Schwarz spends a lot of time these days with Alzheimer's patients who want to choose the timing of their deaths. She said all she can offer them is guidance about stopping eating and drinking as a way to hasten the end.

"It's a very, very hard choice to make when life still has pleasure & purpose," she wrote. But "the window can close" on a person with dementia, affecting the ability to refuse food and water once that person can no longer feed herself and caregivers enter into the decision.

This means that a self-directed death for someone with dementia might always have to mean saying farewell to life a bit sooner than she might have otherwise chosen.