How boundaries of assisted suicide can shift and expand
Posted January 20
A thin, spry and stylish 67-year-old with a lilting South African accent, short-cropped hair and dangling earrings, Gerda Saunders has for the past several years been planning her death.
Saunders is neither suicidal nor depressed. A retired University of Utah gender studies professor and a devoted mother of two and grandmother of three, she is cogent, eloquent and effervescent.
Her thoughts about death began in 2010, just before her 61st birthday, when she was diagnosed with microvascular disease, a close cousin of Alzheimer's. She has watched her own faculties slip — driving her into retirement, then ending her driving privileges. And she knows the disease will before long entirely rob her of consciousness.
She means not to let that happen.
Her current plan is to take a "death trip" with her husband Peter and their two adult children from their home in Salt Lake City to the Netherlands — after her condition deteriorates but while she is still herself — returning to her ancestral homeland, which will allow her, even as a noncitizen, to legally end her life on her own terms.
Europe is the destination because, while six U.S. states now have legalized assisted suicide, each of them requires that the patient be of sound mind and have less that six months to live. Saunders' disease will not allow her to fulfill both requirements. By the time her death is imminent, she expects to have long since lost her mind.
Holland and Belgium, in contrast, have dramatically liberalized eligibility for assisted suicide to include not just dementia, but also people with anorexia, the severely depressed, alcoholics and others.
The broad expansion in Europe worries many physicians, religious groups and disability rights advocates in the U.S., who fear the long term impact on social norms and question whether it is even possible to draw a line on assisted suicide that will hold over time.
They look at California, whose assisted suicide law is less than a year old, but where activists there are already pushing to expand to Alzheimer’s-related conditions. In states like Utah, where an assisted-suicide bill has been filed for the upcoming session, similar challenges will not be far off.
Answers may come from voters, legislators, or — as so often occurs in U.S. policy debates — from the courts. In Utah, for the fourth time a bill has been filed in the upcoming legislative session to legalize assisted suicide. That bill may go nowhere again, but, as with the gay marriage debate, assisted suicide is a policy frontier in flux, one that is unlikely to go away and one where changes could come suddenly and with force.
For Saunders, meanwhile, the overriding concern is to spare her family pain. She doesn’t want to drag them to Europe to see her die, but neither does she want to impose other options on them that would be more traumatic and may expose them to legal jeopardy.
Meantime, she has been actively speaking and blogging about her experiences. Her new book, "Memory’s Last Breath," to be released in June, weaves together her current dementia experiences with memories of her youth in South Africa, her marriage, her immigration to the United States and her family and career, leavened with notes on the science of memory and memory loss.
For all of Saunders' planning, details for the event remain in flux. If she had her druthers, she would wait quite a long while — in fact, until her own sense of self had utterly dissolved — to travel to the Netherlands.
“As long as I mean something to my children, and as long as I can be a 'warm body' who can hold a grandchild, and I find comfort in that, and the grandchild finds comfort in that,” Saunders said, “that to me is a level of personhood that I value.”
Saunders supports a proposal by state Rep. Rebecca Chavez-Houck, D-Salt Lake, that would legalize assisted suicide in Utah, but she’s not actively involved in lobbying for the bill. Tightly modeled on those in the other six states, the bill before the upcoming Legislature that convenes Monday does not address her dilemma.
"My issue is dementia and informed consent," Saunders said. "I've spoken to Rep. Chavez-Houck, and we both felt that adding that angle to the bill would just make it too complex."
But complexity may be the nub of the issue, not a distraction.
Saunders is not a good poster child for the Chavez-Houck proposal because assisted suicide laws in the U.S. have so far been drawn within narrow limits. It is hardly surprising that those suffering from such conditions might see assisted suicide laws, however narrowly defined, as an opening ante, not a final offer.
“I would say, very clearly, that this is not imminent,” says Chavez-Houck of any effort to expand assisted suicide beyond the short-term terminal illness window. “I can’t speak to where we will be decades from now. ... We need to operate in the now — and in the best interest of patients.”
But opposition around the country remains fierce, much of it focused on concerns from the disabled community. Most prominent U.S. disability rights groups oppose assisted suicide, expressing fear that as society comes to see loss of "dignity" and "autonomy" — the very physical conditions that often define their own worthwhile lives — as rationales for assisted suicide, that the perceived social value of a disabled life will erode.
Disability rights advocates note data from the state of Oregon showing that 92 percent of assisted suicide patients in that state cited “loss of autonomy” as a reason for their choice, while 41 percent cited a desire to not “burden” family or caregivers.
Many religious leaders also are digging in. In keeping with its longstanding tradition on the sanctity of life, which includes opposition to abortion and the death penalty, the Catholic Church is fighting assisted suicide laws wherever they are proposed. Catholics are joined by The Church of Jesus Christ of Latter-day Saints, which in October released a letter calling on church members in Colorado to oppose assisted suicide there.
Jean Hill, government liaison for the Catholic Diocese of Salt Lake City, sees no stopping point once the assisted suicide door is opened. “In this case we’re saying assisted suicide is the compassionate thing. How is it not compassionate for the terminally ill 17-year-old? Or for the 93-year-old who is just ready to go? Or for the person in a vegetative state?" she said.
Recent opinion polls, as well as voter behavior, suggest that Americans are increasingly open to assisted suicide liberalization, and even the American Medical Association now appears to be reconsidering its longstanding strong opposition.
There is a chance that the U.S. Supreme Court could, as it did with gay marriage and abortion, decide the issue instead of voters and the states. The Canadian Supreme Court did just that in 2015, overturning criminal law and forging one of the most liberal assisted suicide regimes among Western democracies.
Sorting out the politics and the long-term implications of this policy is not going to be easy. Tradeoffs and unintended consequences are inevitable, and those making decisions will need to look beyond their own borders for clues about how today’s policy choices might evolve down the road.
Evolving in Europe
The sister states of Holland and Belgium have long been at the forefront of the assisted suicide movement, and are thus a likely destination not only for those who, like Saunders, are looking for palatable legal options, but also for those looking to discern likely future directions of the movement.
One of Belgium's widely noted cases occurred in 2013, when two deaf 45-year-old twin brothers who were losing their eyesight took their own lives because, they said, they could not accept the pain of not being able to either hear or see each other.
In another widely noted case last year, a Belgian woman in her 20s suffering from PTSD and anorexia, both stemming from childhood sex abuse, took her own life under physician supervision. In recent years, Belgians have also ended their lives for autism, chronic fatigue, partial paralysis, depression and bipolar disorder.
Last year, a 41-year old Dutch father of two, an alcoholic, took his own life under a doctor's supervision. His brother told a Dutch magazine that the man had argued that his life was now “a hopeless cocktail of pain, drink, loneliness and suffering.” The doctors agreed.
These cases are unusual, said Peggy Battin, a medical ethicist at the University of Utah Medical School who specializes in the ethics of dying. Roughly 80 percent of assisted suicides in Belgium and Holland continue to be cancer cases, with most occurring shortly before natural death.
Still, the boundaries continue to shift. The Netherlands currently allows assisted suicide only for those who have “unbearable suffering” and no prospect of improvement, a category that includes extreme mental suffering.
But in October, Dutch government officials proposed a law that would create a new category, permitting assisted suicide for healthy, elderly people who feel they have "completed life."
In a letter to the Dutch Parliament, Reuters reported, health and justice ministers said that people who "have a well-considered opinion that their life is complete, must, under strict and careful criteria, be allowed to finish that life in a manner dignified for them." The proposed policy would be limited to the elderly, but it did not suggest a specific age limit.
These Dutch and Belgian precedents strike many Americans as extreme, which is one reason that all state legislation so far has drawn a line at terminal disease and a death expected within six months.
But Saunders looks more tolerantly at European standards, saying she is “generally sympathetic to people who feel that they do not have the quality of life they desire.”
Saunders is not alone. Battin is likewise sympathetic to European cases that would currently be seen as extreme and troubling in the United States.
Like many people, Battin has a wrenching personal story. Her husband's spinal cord was severed in a 2008 bicycle accident, leaving him paralyzed and dependent on life support systems for nearly five years, even returning to teaching English from his home using remote technology. But in 2013, as his medical complications increased, he had had enough. He asked to have his ventilator turned off and died legally by his wife's side.
Informed both by her research and personal experience, Battin looks with favor at the current state of Dutch assisted suicide policy, which includes those who wish to die for conditions such as chronic fatigue syndrome, severe depression or anorexia.
“The Dutch say they don’t need to fear dying as much as we Americans do,” she said, paraphrasing what a Dutch physician told her years ago.
Regarding those who seek assisted suicide for conditions like chronic fatigue syndrome, severe depression or anorexia, Battin said she does not think we should be “forcing people to endure conditions that are intolerable to them and cannot be relieved, and that would be the effect of drawing lines too narrowly.”
“Keep in mind the degree of distress and suffering that those suffering may come with these conditions,” Battin said.
“But we do want to be careful to prevent abuse,” she adds. Battin co-authored a 2007 study of the Dutch and Oregon experience, published in the Journal of Medical Ethics, which found no evidence that vulnerable populations such as the poor, minorities or the disabled were more likely to use the assisted suicide option.
But to some disability rights advocates, those findings are not reassuring.
Disability rights advocates on both sides of the Atlantic have long expressed fears that assisted suicide will diminish social respect for the disabled. But for many disability advocates, concerns hover less on being hurried toward death than on social attitudes toward living with disability.
The Disability Rights Education & Defense Fund, a Berkeley, California-based advocacy group, notes in a lengthy white paper that Oregonians who choose assisted suicide do not cite pain as their motivation, but rather dignity: "loss of autonomy (89.9 percent), the loss of the ability to engage in activities that make life enjoyable (87.4 percent), the loss of dignity (83.8 percent), and the loss of control of bodily functions (58.7 percent)."
"But as many thousands of people with disabilities who rely on personal assistance have learned," the DREDF paper argues, "needing help is not undignified, and death is not better than reliance on assistance. Have we gotten to the point that we will abet suicides because people need help using the toilet?"
"Instead of creating a culture of competent palliative care, I fear we will, as time goes on, choose an easier route — not just for the patient, but for the provider and for the state,” said state Rep. Edward Redd, R-Logan, a physician who has served for years as the medical director of a hospice. Redd fears that as social norms shift, any safeguards erected to protect vulnerable populations, including the mentally and physically disabled, will erode.
Redd projects that the real damage from the resulting shift in rhetoric and social mores will become evident in 25 or 50 years, after his lifetime. “These are shifts that happen gradually,” Redd said, “but policy is not only a result of public opinion — policy changes also help reshape public opinion into the future.
"When you have single-payer or managed health care," Redd said, "society will be looking at financial costs. Here you have a large group of people with mental or physical disabilities, and you'll start to see a shift from 'I don’t want to be a burden' to "it is my duty to not be a burden.’”
Disability advocates point to the case of Laura Latimer, a severely disabled 12-year-old girl in western Canada who in 1993 was killed by her father, who used carbon monoxide in a garage. A 1999 poll found that 73 percent of Canadians believed Latimer acted from compassion and should receive leniency, and 41 percent believed “mercy killing” should be legal.
The last person prosecuted in the U.S. for assisting in a medical suicide was in 2013. Barbara Mancini, a Pennsylvania nurse, had handed a full vial of morphine to her 93-year-old father who was dying of kidney failure and heart disease. Her father had requested it. He drank it, and the daughter was charged with murder. After a year of legal trauma that left her family emotionally scarred and financially destroyed, the case was thrown out of court.
Mancini's story haunts Saunders, even though such prosecutions are now rare. Her driving concern is to spare her family both legal jeopardy and emotional trauma.
She’s seen up close what progressive dementia can do to loved ones. Her mother went through dementia in South Africa, supported by Saunders’ siblings with intermittent visits by Saunders.
Here in Utah, she also helped a neighbor couple as the husband went through the entire cycle of dementia. For years, Saunders would drive the neighbor woman shopping, and then she added visits to her husband in hospice.
One of the poignant moments Saunders describes in her book is the day her own creeping dementia forced her to stop driving, so she could no longer drive her neighbor to visit her husband.
If there is any common ground on this polarizing issue, it may center on the need for more attention to the trauma endured by both patients and their families, both for those with terminal diseases and for those with chronic long-term disabilities.
For Battin, this begins with being honest about the kinds of options we do allow. She points to a range of sometimes traumatic exit paths used in the U.S., including do-not-resuscitate orders, refusal of treatment, overuse of opioids ostensibly for pain, refusing artificial nutrition and hydration, and voluntarily ceasing to eat and drink.
Then there is “terminal” or “palliative sedation,” a common practice in the U.S. by which sedating medications are used to render a patient unconscious and on a glide path to death — a point the patient can no longer eat or drink and standing DNR orders can then lead to withholding artificial feeding and hydration.
“Often these measures do not involve robust consent,” Battin said. “Before we worry too much about the personal choices made by twins in Belgium, we need to look at what we do here, at the kinds of obfuscation we engage in.”
Saunders continues to worry about the effects of dying on families, both her own and others. And in her mind, that means much more robust social welfare support for patients facing protracted death and the loved ones who care for them.
Her concerns are also shared by many opponents of assisted suicide, including most notably the Catholic Church, which has always paired its insistence on protecting life with an equal emphasis on supportive social welfare policies.
In his 1995 Encyclical, The Gospel of Life, Pope John Paul argued that "to fulfil its vocation as the 'sanctuary of life,' as the cell of a society which loves and welcomes life, the family urgently needs to be helped and supported. Communities and States must guarantee all the support, including economic support, which families need in order to meet their problems in a truly human way."
Although she is an atheist, the Catholics get no argument from Saunders on this last point. She knows firsthand the financial, logistical and emotional burden a lengthy and traumatic death can impose on surviving family.
"My neighbor’s wife was nearly dead by the time her husband finally died of dementia," she said, describing the years of solitary grind her neighbor endured.
"By the time he was finally in the hospice, she had pneumonia and was on oxygen, attached by a long tube to a heavy tank in her basement. She could not leave the house to visit him. Medicare took two weeks to approve a portable oxygen tank. By then he was in a coma and had only days to live.”
"If you want people to not want to die," Saunders concludes, "you have to make it less burdensome for them to stay alive and for their loved ones to care for them.”