The Washington PostDemocracy Dies in Darkness

In Oregon, pushing to give patients with degenerative diseases the right to die

People demonstrate in support of allowing doctors to prescribe life-ending medication to terminally ill patients in Sacramento in March 2015. The law passed, but it excludes people with degenerative diseases such as Parkinson’s and Alzheimer’s. Efforts are under way in Oregon to open up more avenues for people with these diseases to hasten death. (Rich Pedroncelli/AP)

LOS ANGELES — Shortly after she was diagnosed with Alzheimer’s disease at age 56, Nora Harris moved to Oregon from California with her husband, thinking it would be a place where she could die on her own terms.

Shortly after he was diagnosed with Parkinson’s disease at age 58, Bruce Yelle migrated to Oregon from the Golden State for the same reason. This was the state, after all, that pioneered medically assisted suicide in the United States when its Death With Dignity Act took effect in 1997.

As it turned out, both Harris and Yelle were ineligible: People with Alzheimer’s, Parkinson’s, Huntington’s, multiple sclerosis and a host of other degenerative diseases are generally excluded from the Oregon law.

This is because some degenerative diseases aren’t fatal. People die with Parkinson’s, for example, not because of it. Other diseases, such as advanced Alzheimer’s, rob people of the cognition they need to legally request the suicide medications.

Harris — a onetime Virginia Woolf scholar who worked as a library branch manager — died in October at 64, unable to speak coherently, feed herself or recognize loved ones. Though she had filled out an advance health-care directive instructing caregivers not to feed her if she lost the ability to feed herself, she was spoon-fed until two days before her passing.

“Nora did not have a peaceful death,” said her husband, Bill Harris, who lobbied on behalf of a newly approved bill to update Oregon’s advance-directive law.

Legalizing assisted suicide has stalled at every level

Yelle, also 64, is alive and active, trying to change laws in Oregon that would essentially open up more assisted suicide avenues for people with these diseases. He said that unless he can obtain a doctor’s prescription for a lethal medication, “I’m going to have an ugly death.”

Their efforts are among several throughout North America that highlight a quiet but concerted push to bring the right-to-die debates to a new frontier: people with dementia, Alzheimer’s and other degenerative diseases.

Relatively modest drives are afoot in Washington state and California, where organizations have launched education campaigns on how people can fill out instructions for future caregivers to withhold food and drink, thereby carrying out an option that is legal to anybody: death by starvation and dehydration. (It is often referred to as the “voluntarily stopping eating and drinking” method.)

The boldest bid is taking place in Quebec. Prompted by a 2017 murder case involving the apparent “mercy killing” of a 60-year-old woman with Alzheimer’s by her husband — who smothered her with a pillow — the provincial government is studying the possibility of legalizing euthanasia for Alzheimer’s patients. Unlike medically assisted suicide, a medical doctor would administer the fatal dose via injection. A survey in September found that 91 percent of the Canadian province’s medical caregivers support the idea.

“The process that could lead to [legislative] changes has already begun,” said Marie-Claude Lacasse, a spokeswoman for the Quebec Ministry of Health and Social Services.

Somewhere between these points is Oregon, where several lawmakers are trying to push the right-to-die envelope.

Under the current law, eligible patients can obtain prescriptions for lethal barbiturates. Qualified patients must be diagnosed with a terminal illness, have a prognosis of six or fewer months to live, and self-ingest the drug. The vast majority — more than 70 percent, according to the Oregon Health Authority — have cancer; most others have either heart disease or amyotrophic lateral sclerosis, also known as Lou Gehrig’s disease.

Washington state, Vermont, California, Colorado and the District of Columbia have passed laws modeled on Oregon’s.

Rep. Mitch Greenlick (D), chair of Oregon’s House Committee on Health Care, began looking into expanding the state’s Death With Dignity Act a few years ago, when a well-known 78-year-old lobbyist in the capital, Salem, fatally shot himself in the head after learning that he had Alzheimer’s.

“That really shook me up,” said Greenlick, a retired director of the Kaiser Permanente Center for Health Research. “I started thinking, people with Alzheimer’s should be able to have some control over how they die, rather than having to shoot themselves.”

His 2015 attempt to expand the terminally ill window from six months to a year failed. Next year he plans to float another bill that would open up the state’s Death With Dignity law to dementia patients by doing away with all stipulations about terminal time limits.

Some of the efforts have faced opposition from an unlikely adversary: the national right-to-die movement. In particular, groups such as Compassion & Choices, the nation’s largest right-to-die organization, and the Death With Dignity National Center, a main author of the original law, have little appetite for widening access to lethal drugs in the states where medically assisted suicide already is legal.

Such meddling, they fear, could give ammunition to critics and frustrate their efforts to bring the narrowly defined statute to as many states as possible.

But it’s not all about tactics for them.

“It’s really important that the person is the decider of how they die,” said Kim Callinan, chief program officer for Compassion & Choices. “And for that reason we would not expand the eligibility criteria for medical aid in dying for somebody, for example, who has advanced dementia. Because when a person has advanced dementia, they’re no longer able to speak for themselves.”

The national movement is at a critical juncture: Public support for medical aid-in-dying laws has surged, with a 2017 Gallup poll showing that 67 percent of Americans support doctor-assisted suicide, up from just more than half in 2013. But 2017 wasn’t a great year for right-to-die advocates legislatively. Though about 30 states saw efforts to legalize medical aid in dying, not a single bill became law.

Bill Harris sued his wife’s care facility for spoon-feeding Nora, but he lost. The judge wrote in the ruling that the possibility couldn’t be ruled out that she had changed her mind about feeding because she opened her mouth when a spoon of food was put to it. Since then, elderly patients across the state have been adding written statements to their advance directives explicitly demanding not to be spoon-fed if they lose the capacity to feed themselves, said Harris’s attorney, Jason Broesder.

He said that at least 50 of his clients have recently made or requested the change in their advance directives. “Clients are saying, ‘I want you to make sure the state is not going to make me eat from a spoon when I don’t want to,’ ” he said.

In late February, Oregon lawmakers passed legislation — in a party-line vote, with Democrats prevailing — that would study how to improve the process of creating and carrying out advance directives. Gov. Kate Brown (D) is expected to sign it.

Supporters such as Harris and Yelle hope it will lead to a new advance-directive form enabling people to check a box instructing future caregivers to withhold spoon-feeding — also known as “assisted feeding” — so as to hasten death, should they become incapacitated by dementia. This would probably put Oregon on the national forefront of advance directives, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University School of Law in St. Paul, Minn.

“Advance directives are normally used to opt out of . . . feeding tubes, mechanical ventilation, cardiopulmonary resuscitation, antibiotics and surgery,” he said. “To be very explicit and tackle [spoon-feeding] head on, that, I think, would be a novel move.”

The bill has stoked the fury of Oregon Right to Life, whose leaders fear the legislation would, if signed into law, “endanger Oregonians with dementia and Alzheimer’s, allowing their health-care representatives to remove their access to food and water.”

Lois Anderson, executive director of Oregon Right to Life, says Alzheimer’s patients often have more capacity than meets the eye.

“They might not be able to get in a car and drive to Seattle, but they maybe have agency to decide what movie they want to watch, or if they want to go to the sunroom, or do they want to eat,” Anderson said. “We believe that that agency, that ability to make those decisions, should be respected. That’s part of human dignity.”

Yelle is working with state Sen. Arnie Roblan (D) to advocate an expansion of the state’s Death With Dignity law to include sufferers of not only Parkinson’s, but also Alzheimer’s, dementia, multiple sclerosis, and any “incurable condition that will result in unbearable physical or mental pain.”

The phrase “unbearable suffering” is a term also used as the eligibility threshold in Belgium and the Netherlands, which have the world’s most liberal euthanasia laws. Lethal injection by a physician is available to terminally ill children and clinically depressed adults, as well as people with dementia, in those countries.

Roblan says he plans to introduce a bill in 2019, during the next full legislative session. In Oregon, the sessions during even-numbered years are brief.

“It’s a conversation I think we need to have, and I think Oregon is a place where that can happen,” Roblan said.