Is assisted suicide a ‘clear and present danger' to people with disabilities? A new film asks tough questions

The Guardian

27-01-2025

In 1983, Elizabeth Bouvia, a 26-year-old woman in California with a non-terminal but debilitating illness, tried to starve herself to death in a hospital. 'I've made a confident, rational decision,' she said.
Doctors began force-feeding her, which she resisted. The ensuing legal case turned her into a focus of intense public attention. A headline declared: 'Elizabeth Bouvia is young, pretty, smart – and ready to die.'
Bouvia, who had cerebral palsy and severe arthritis, could live 15 or 20 years with treatment, according to her doctors. But she maintained that life did not feel worth living and that she found life in a hospital intolerable. She lost her case; a court ruled that she did not have the right to die.
After Bouvia lost her case, she disappeared from public view. Reid Davenport, a documentary filmmaker, wanted to know more. Life After, his feature documentary premiering this month at Sundance, looks at Bouvia's story and asks larger questions about euthanasia and assisted dying.
Davenport also has cerebral palsy, and his documentary research left him with a sense that disabled or chronically ill people who request assisted dying are often reacting to a lack of support or believe that the world does not want them.
'Assisted suicide presents a clear and present danger to disabled people,' Davenport told me during a recent video call. 'I take that position from a leftist point of view.'
Today, in some jurisdictions, Bouvia would have the right to die. In 2019, Canada expanded its Medical Assistance in Dying program (Maid) to allow applicants with chronic illnesses to request euthanasia by medical overdose even if their deaths by illness are not 'reasonably foreseeable'. Canada plans to begin allowing applications from people with solely mental illnesses in 2027.
More than 13,000 Canadians died through assisted dying in 2022 – 4.1% of Canadian deaths. This marked a 30% rise over the year before, according to reporting by Leyland Cecco for the Guardian.
Ten US states and the District of Columbia allow 'medical aid in dying', though with stricter requirements, which usually require a diagnosis of natural death within six months. California, which has a population size similar to that of Canada, had only 853 assisted dying deaths in 2022. The UK is currently debating legislation to legalize assisted dying.
One of Davenport's previous films was a documentary, I Didn't See You There, that sought to convey life with a disability not by turning the camera on himself, but by pointing it outward, from the vantage of a roving wheelchair, at the rest of society.
Bouvia's life, Davenport says, is a 'touchstone for all these other issues disabled people face'. Her story is complicated and doesn't necessarily lend itself to partisan conclusions. In 1986, three years after she first addressed the court about her wish, a judge reversed the earlier decision. By that time, Bouvia was on treatments that would have made death by starvation excruciating. She chose to keep living, but told the press that this was a practical decision and she still would have preferred to die.
In Life After, Davenport and Colleen Cassingham, one of the film's producers, track down Bouvia's sisters with the help of a private investigator. They learn that she died in 2014, about a decade later than doctors had predicted.
The interviews, plus home-video footage supplied by the family, paint a picture of a woman who benefited from technological advances and better support, was a voracious reader and seemed content, even happy. Rather than in a hospital, she was living in her own apartment, with a live-in nurse.
'I would say she was in a better place than she was in the 80s,' Davenport says, though he acknowledges it is difficult to say because Bouvia can't speak for herself.
'Everybody wants to know, did she change her mind?' her sister, Teresa Castner, says in Life After. She sighs and throws out her hands. 'Who the fuck knows? I don't think she changed her mind per se. I think she accepted her fate. I think she came to the realization that this was not how she wanted to die.'
Bouvia's sisters say that she was happiest when she had the most autonomy. She was crushed when she was discouraged from pursuing her dream of being a social worker, despite her college education – one of the incidents that seems to have precipitated her original request to die.
'I think there are a lot of parallels between Elizabeth Bouvia and the arguments disabled people are making about [Maid],' Davenport says. In the documentary, he travels to Canada. Although the overwhelming number of Maid deaths there are related to terminal illnesses, activists and reporters have identified cases and practices that call the system's guardrails into question.
The patients and doctors who speak to Davenport express concern that non-terminal euthanasia requests have a lot to do with the limits of Canada's overstretched healthcare and welfare systems, plus the fact that people with disabilities – including Bouvia, in some of her public remarks – are often fearful of being a 'burden' on their families or on society. During a protest in Canada, a critic holds a sign: 'Assisted Suicide: The World's Cheapest Healthcare.'
Advocates for assisted dying view it as 'having control over your life', Davenport says, but 'the decision is not truly free choice in many cases. There are other factors dictated by external forces', like poverty, a lack of in-home support or months-long waiting lists for specialist doctors.
Davenport believes the enthusiasm for assisted dying has 'a lot to do with cost savings'. The Canadian parliamentary budget officer, the documentary notes, estimated that expanding Maid would save $149m in healthcare costs.
Some experts have called fears about Maid overblown. They note that most patients are people with terminal illnesses choosing to die on their own terms. 'You have to meet rigorous eligibility criteria,' Jocelyn Downie, a law professor who studies end-of-life policy, told the Guardian in 2022.
The exact number of Canadians who have died through Maid, as well as the breakdown of types of patients, is difficult to know – in part because medical authorities in Ontario and Quebec 'explicitly instruct doctors not to indicate on death certificates if people died from euthanasia', according to the AP.
According to available data, about 3.5% of the people who died through Maid in Canada in 2022 were people with chronic, non-terminal illnesses.
'I work in the healthcare system and see people with severe chronic medical conditions all the time,' Mona Gupta, a psychiatrist at the University of Montreal and the chair of a panel studying Maid and mental illness, told the Guardian last year. 'The idea that 400 of them – in a country of 40 million people – had reached the point where they had exhausted all treatment options, and wanted to access Maid, does not seems extreme to me.'
Davenport worries that society encourages people with disabilities or chronic medical conditions to view life as not worth living. Life After discusses the case of Jerika Bolen, a 14-year-old in Wisconsin with spinal muscular atrophy who in 2016 was allowed to end medically necessary treatment. She died in hospice care after the community threw her a prom, widely celebrated in the media, called 'J's Last Dance'.
Bolen's mother has said: 'My only words to anyone questioning this is that I love that girl with every cell in my being [and] no one in their right mind would let someone suffer like she was.' An anti-euthanasia group, Not Dead Yet, questioned the 'one-sided applause for her suicide', however, asking a local newspaper: 'If she were a 14-year-old diabetic refusing insulin, would the reactions be the same?'
In reviewing footage of Bolen's 'prom', Davenport says, 'it seemed to me like Jerika was surrounded by people who thought she would be better off dead … No one, much less a child, should be told that ending her life would be an admirable decision.'
I ask Davenport if adults with terminal illnesses should be able to end their lives voluntarily. 'Theoretically, I think assisted suicide could be safe,' he says. But he feels that it is inherently unsafe in a 'neoliberal' society where doctors and patients are subject to tremendous social and economic pressures. 'Let's have that discussion when it is safe.'
Although some leftwing publications have expressed concern, most skepticism of euthanasia so far has come from disability activists or conservatives, with the subject treated as 'cut-and-dried in liberal circles', Davenport says. He worries that progressives will dismiss his documentary as cynical or alarmist.
'The 'slippery slope' is considered fear-mongering,' he says. 'But there are instances where it's a valid argument.'
In the US, you can call or text the National Suicide Prevention Lifeline at 988, chat on 988lifeline.org, or text HOME to 741741 to connect with a crisis counselor. In the UK and Ireland, Samaritans can be contacted on freephone 116 123, or email [e-mail] or [e-mail]. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at befrienders.org