When Richard Brandon Ulrich died in June at age 84, the 6-foot-1 Morgan Hill man weighed just 90 pounds.
The Alzheimer’s disease that slowly crept up on the retired San Jose middle school teacher had strengthened its grip in the last three years. By the end, Ulrich was unable to talk, eat or drink.
Watching his heart-wrenching decline, his wife, Patricia Ulrich, wondered with distress why California’s right-to-die law — which took effect three weeks before his death — couldn’t be expanded to allow people like her beloved husband a more dignified end.
“If he had been able to determine the point at which he would no longer be around, it would have been a whole lot earlier,’’ said Ulrich, 75. “As he stated to me, his uncle had Alzheimer’s. And it was clear that he did not want that path in his future.’’
Since California’s controversial new law went into effect in the late spring, it has allowed approximately 150 state residents suffering from terminal illnesses to get physicians to prescribe a lethal prescription drug. But for many Californians who fear wasting away slowly over years, the law falls short. The reason: The law requires someone to make a competent decision to die, which patients with dementia clearly can’t do.
“We all regard this new End of Life Option Act as just a baby step,” said Salinas resident Barbara Parrish, who belongs to a Central Coast discussion group whose members meet monthly to talk about end-of-life options. Most of the group’s members joined after watching loved ones die slowly while suffering, she said.
Parrish, a 77-year-old hospice worker at Community Hospital of the Monterey Peninsula, is grateful for the new law. But she said she believes its narrow eligibility requirements do not address some of the group’s major fears — including a drawn-out death complicated by a debilitating stroke or dementia.
“All of us in the group hope if we have a stroke it kills us,” Parrish said. “But more times than not, it doesn’t. It leaves you in an incapacitated state, which is for most of us more scary than just outright dying.”
California’s new law details strict criteria for eligibility, including a diagnosis of less than six months to live — which in the case of even severe stroke often isn’t applicable. Patients must also be able to self-administer a lethal prescription and be mentally competent at the time they request the drug — ruling out dementia victims and often people who have had serious strokes.
But as Americans live longer, strokes and Alzheimer’s disease are becoming more common. In 2013, stroke was the fifth-leading cause of death in the U.S. and Alzheimer’s the sixth. While recovering from a stroke is possible, Alzheimer’s causes progressive mental deterioration and has no cure.
The question of how to apply right-to-die laws to someone with dementia is a sticky one, said Donna Cohen, a psychologist at the University of South Florida who specializes in geriatric mental health and aging. Even if someone now feels strongly that they would not want to live with advanced dementia, they might not feel that way as the disease progresses, she said.
“It gets really dicey,” Cohen said. “But it’s still worth a thoughtful discussion with a panel of experts.”
In Palo Alto, Dr. Michael Turbow, a retired oncologist, has already had that discussion with his family. He even adopted a dementia provision for his advance directive: “If I am not me, I do not want to be.’’
While not binding legally, it was the impetus he used to sit down with his wife, son and daughter-in-law to talk about his family’s history with the disorder and what Turbow wants if he should be diagnosed with its symptoms.
The document states that if he is unable to safely swallow food and water and is not mentally competent to make his own health care decisions — and it’s unlikely that his condition will improve — he is not to be fed intravenously or through a feeding tube.
“Delaying death is not the same as prolonging life,” Turbow said. “If I’m not aware of who you are or who I am, that’s not life.’’
Canada recently wrestled with the issue before its lawmakers in June passed a law allowing physicians and nurse practitioners to assist patients who want to end their lives. Some Canadian lawmakers had sought to expand the eligibility criteria to include degenerative diseases such as Alzheimer’s, but that provision was ultimately dropped, despite popular support.
In an Ipsos Reid poll of more than 2,500 Canadians released in February, 80 percent supported allowing patients with a diagnosis of “grievous and irremediable medical conditions” to make an advance request for physician-assisted death, even if the patient is no longer competent when the request is carried out.
While Canada’s new law doesn’t address such requests, Shanaaz Gokool, CEO of Dying with Dignity Canada, warned in a recent interview with the Bay Area News Group that “there are still going to be people who don’t qualify for an assisted death and are going to take measures into their own hands.”
She cited the example of Jean Brault, a 61-year-old Quebec resident who long suffered from a brain clot. In mid-February, he starved himself for 53 days to be close enough to death to meet the eligibility requirements for Quebec’s end-of-life care law, which enabled him to die in April.
In San Jose, a 65-year-old woman named Judy said she understands that sentiment. For years, she has been caring for her often- physically abusive 91-year-old mother, who was diagnosed with dementia in 2003. Sometimes the agitated woman recognizes her daughter, who bathes and dresses her, but often she does not.
“If someone is trying to tell me that she has a quality of life, I beg to differ,” said Judy, who asked that her last name not be used to protect her privacy.
“My children already know that if anything like this should occur to me that I will be taking my own life if I cannot find a legal way” out, Judy said. “They know I don’t want them to have to be in a position like I am now. I want my children to live and enjoy their lives.’’
Opponents of right-to-die laws argue that there is a high risk of elder abuse or coercion. The laws “simply put pressure on people who may not fully want this at a time when they are perhaps beginning to lose their capacity and are being pushed into a decision,” said Marilyn Golden, senior policy analyst for the Berkeley-based Disability Rights Education & Defense Fund. “We opposed this law for many reasons — it already poses very significant dangers, and any expansion would only increase those dangers.”
Even many advocates of right-to-die laws argue that “advance consent in dying” provisions would leave patients too vulnerable.
Compassion & Choices, a Colorado-based nonprofit that led the fight for California’s law, says it would not support any bill that would allow people to request aid in dying for themselves if they become mentally incompetent in the future.
One law “puts the power in the hands of the dying patient; the other would put the power in the hands of someone else,” said Matt Whitaker, a spokesman for the group.
Some opponents of adding such provisions to right-to-die laws also fear a slippery slope. They point to Belgium, which has gotten international attention for euthanizing patients who weren’t terminally ill. The cases have included severely depressed but physically healthy patients and a pair of 43-year-old deaf twins who asked to be euthanized when they learned they were going blind.
State Sen. Bill Monning, D-Monterey, who co-sponsored California’s new law, said he’s heard from many residents who believe the law doesn’t go far enough to prevent suffering and loss of dignity from slow, progressive ailments. And Monning says he’s sensitive to their concerns. “But this is not that law,” he said.
Still, he feels the hard-won law represents a huge step forward for many terminally ill Californians. The legislation, he said, was carefully crafted to avoid coercion and to ensure that even well-meaning family and friends could not overstep the will of the patient.
“It may be that in the future there would be an evolution of the law,” Monning said. But “I have no plans to do that at this stage.”
