— A measure Gov. Jay Inslee signed into law earlier this month will cut down the wait time between when patients first ask for life-ending medication and when they can receive it.
By Melissa Santos
A new Washington law aims to make it easier for patients to access aid-in-dying services under the state’s Death with Dignity Act.
The new law also will let more kinds of health care providers sign off on requests for a medically assisted death, and allow the necessary drugs to be mailed to patients instead of picked up in person.
Why it matters: Family members of people who have had terminal illnesses say the current requirements can be a barrier to patients ending their lives on their terms, which was one of the goals of the 2008 law.
Others saidthe law’s requirements have acted as important safeguards to make sure people are truly ready to die.
Zoom out: Ten states plus Washington, D.C. have laws allowing medically assisted death, according to Compassion and Choices, a nonprofit group that supports access to aid in dying services.
Lawmakers in Massachusetts are once again considering the latest measure introduced there this year.
Catch up quick: Under Washington’s voter-approved Death with Dignity law, patients qualify for physician-assisted death if they are terminally ill and have an estimated six months or less left to live.
To receive the drugs needed to end their lives, patients must ask three times — once in writing, and twice orally, with 15 days between the two oral requests.
Two doctors have to affirm the patients’ prognosis and that they are acting voluntarily.
Details: Washington’s new law will cut the required waiting time between patients’ oral requests to seven days.
It also will allow physician assistants and advanced nurse practitioners to be one of the medical providers who sign off on the procedure, and eliminates a two-day waiting period for prescribing the drugs.
What they’re saying: Supporters of changing the law told a House panel last month that some patients who seek physician-assisted death are dying before they can complete the 15-day waiting period, or have become physically incapable of making another request before that timeline has expired.
“Too many families, too many patients have faced great anguish and great pain in being unable to carry out their end-of-life wishes as the initiative intended,” state Sen. Annette Cleveland (D-Vancouver) said during a Senate floor speech.
The other side: Opponents expressed concerns that people may choose to end their lives to avoid being a burden to family members, or because they are being coerced.
“If it’s going to change, shouldn’t it really be changed by another initiative?” state Sen. Mike Padden (R-Spokane Valley) asked during debate on the Senate floor. “Shouldn’t we honor what the people have said?”
What’s next: The update to Washington’s law takes effect on July 23.
Thanksgiving is typically a joyous time for the Bluestein family. Their Bridgeport, Conn., home is filled with laughter, music and even a cooking competition. But last fall, the mood was somber.
“I think next year will be the year that Grandma will die,” Lynda Bluestein, 75, recalled telling her husband, children and grandchildren as they gathered in the living room.
Ms. Bluestein’s 16-year-old twin granddaughters asked if she was scared.
“I’m just happy that I don’t have to suffer endlessly,” she replied.
Ms. Bluestein, who was diagnosed with late-stage fallopian tube cancer, said that if chemotherapy stopped working, she intended to make use of a Vermont law that allows certain people to seek and self-administer a lethal dose of medication to hasten their death. The law limits the option to Vermont residents — and Ms. Bluestein was willing to move there, if need be — but this month the state waived the residency requirement for her, part of the settlement of a lawsuit in which she had argued the restriction was unconstitutional.
Now, Vermont lawmakers are considering scrapping the residency requirement altogether, making the practice more broadly available.
The debate over the proposal has parallels to the issue of abortion, in which access to the procedure now differs greatly from state to state in the wake of the 2022 Supreme Court ruling that overturned the right to abortion nationwide.
“To my knowledge, other than what is happening right now with abortion, there are no other medical procedures that are limited to people on the basis of their residency,” said Amitai Heller, a senior staff attorney with Compassion & Choices, an advocacy group that supports expanding access to end-of-life medication. The group helped file the lawsuit on Ms. Bluestein’s behalf.
“It’s just unfair, and it doesn’t really make sense to restrict some sort of medical practice just based on ZIP code or residency,” Mr. Heller said.
Vermont is one of 11 jurisdictions, including Washington, D.C., where certain patients with a terminal illness can seek a lethal dose of medication as they near the end of their lives. Oregon is the only jurisdiction without a residency requirement, after officials there agreed in a 2022 settlement not to enforce the one in its law.
Connecticut, where Ms. Bluestein lives, is not among the states where medical aid in dying is legal. Bills have been introduced repeatedly, starting in 1994, and have failed each time, most recently in 2022. That is when Ms. Bluestein looked to Vermont.
“I thought, I can’t wait any longer for Connecticut to get its act together,” she said.
“We had heard from advocates and our health department that this aid in dying is a medical health care,” said Representative Golrang Garofano, who is known as Rey and is a sponsor of the bill. “There’s no other restrictions around residency requirements for other types of health care.”
Oregon was the first state to pass a medical aid in dying law; it took effect in 1997. Its residency requirement was included to “neutralize the myth that terminally ill people would flock to Oregon to use its medical aid-in-dying law,” said Barbara Coombs Lee, a co-author of the measure. The requirement was also meant to ensure that the law would be “tightly controlled and limited to test safety and effectiveness.”
Vermont modeled its law after Oregon’s, said Ann Pugh, a former lawmaker who worked on the legislation. Ms. Pugh said she now supports the effort to drop the residency requirement. “When someone comes to Vermont, they follow the rules of Vermont, they follow the laws of Vermont, they get the care, they get the services, and this should be no different,” she said.
But opponents do not consider the practice medical care.
“This isn’t a medical treatment,” said Jennifer Popik, the director of the National Right to Life Committee’s Robert Powell Center for Medical Ethics, which opposes such laws. “This is a medical professional abandoning their patient and giving them the tools to end their life.”
Detractors include the Catholic Church and disability rights groups, which worry that physicians and insurance companies may steer people with disabilities toward life-ending measures. Instead, those groups tend to favor improving palliative care, which is focused on easing the symptoms and side effects of disease and treatment.
Brian Kane, a senior director of ethics at the Catholic Health Association, said he was concerned about states’ expansion of access to the practice by dropping residency requirements. “Rather than trying to address the needs of vulnerable people, we offer them the possibility of killing themselves,” he said.
Anita Cameron, a disability rights activist, said that if patients reach the point where they would rather die than live in pain, their doctors are not properly managing their treatment. She said she feared that if the practice became more widespread, it would come to reflect the inequities in the broader health care system.
“There’s just no place for it, especially when we have such a long history of racial disparities in health care and disability discrimination in health care,” Ms. Cameron said.
But proponents of the practice say there are safeguards in the laws to prevent abuse. In Vermont, for example, patients must be 18 or older with a terminal condition and a prognosis of six months or less to live. They must be able to self-administer the medication and be capable of making their own health care decisions.
In Vermont, 173 patients participated in the “Patient Choice at End of Life” process between May 2013 and December 2022, according to the Vermont Department of Health. Many of those patients had cancer, and others had amyotrophic lateral sclerosis, or A.L.S.; neurodegenerative conditions; and other diagnoses.
Dr. Diana Barnard, a physician in Vermont who filed the residency lawsuit jointly with Ms. Bluestein, said she spends significant time with terminally ill patients discussing which options might be best for them.
“This really is all about patients,” Dr. Barnard said. “It’s about patients who are wanting to live, wanting desperately to live, but having to accept that they are living with an illness that is going to end their life.”
Dr. Barnard said her patients want a say in what happens at the end of their lives. They are thinking deeply through a number of ways to be physically and emotionally comfortable during their last days.
Dr. Barnard has patients from New York whom she sees regularly and said it had been difficult to tell them they were ineligible for medical aid in dying because they didn’t live in Vermont.
“It seemed unjust and unfair,” she said.
Ms. Bluestein hopes that the Vermont residency requirement will soon be lifted. She said she was glad she would not be “at cancer’s mercy” and could instead make her “own decisions about when I have had just about all I intend to take from this latest cancer.”
The practice had been at the forefront of Ms. Bluestein’s mind decades before she got sick. Her husband, a physician, had done advocacy work with Compassion & Choices over the years.
Ms. Bluestein thought deeply about the option when her mother died. In the weeks before her death, her mother had a full course of chemotherapy and was fatigued. She didn’t even want Ms. Bluestein or her brother to visit.
“We had no time with her at the end of her life,” Ms. Bluestein said. “I don’t want my children, who are now 45 and 47 years old, to have those memories of me at the very end.”
Ms. Bluestein’s diagnosis of late-stage fallopian tube cancer in March 2021 was her third bout with cancer. She had been diagnosed with breast cancer in 2018 and had a double mastectomy. As she recovered, she was diagnosed with malignant melanoma.
For now, Ms. Bluestein is undergoing chemotherapy, and it appears to be working. If that changes, she is likely to end the treatment, which will quickly make her eligible for hospice. And that is when she is likely to request the lethal dose of medication.
In the meantime, she has been curating 50 years of photographs and putting them into boxes. She hopes to spend her final day, whenever it is, with her family sifting through the photos — ones of her children playing T-ball and soccer and of the family’s many trips to Disneyland — peacefully trading memories.
In the weeks leading up to his death, Craig Mackie’s breathing mirrored the short, sharp strokes he was making on his laptop keyboard, documenting his final days.
“At this point in my fading life, I’m struggling to breathe every day,” Mackie said from his kitchen table in Charlottetown, in early October 2022.
A rapid decline due to pulmonary fibrosis had left Mackie, 71, endlessly gasping for air, requiring near-constant support on oxygen. For months, he used his remaining energy to writeat length about his health, drafting dispatches from the confines of his home and sometimes a hospital bed. Then he shared these thoughts publicly, on a blog and through social media.
“The feedback I’ve been getting is that the way I write is — it seems to speak to a lot of people. So I’d like to keep that going,” said Mackie.
The writing continued as he looked into the possibility of a medically assisted death, determined not to die the way his mother had. She too had pulmonary fibrosis.
“She literally suffocated to death,” said Mackie. “And I thought, if I ever have the choice, that’s not what’s going to happen to me.”
Throughout his life, Craig Mackie used his voice to help others. And he decided to do the same as he faced death, and his choice of medical assistance in dying. A documentary by Jessica Doria-Brown.
Medical assistance in dying, or MAID, has been legal in Canada since 2016.
Mackie’s application was approved in September, and having that option offered him comfort. Throughout his life, he had taken on leadership roles — including at CBC Prince Edward Island and as the former head of Immigrant and Refugee Services Association P.E.I — and sharing his thoughts online about MAID became a way to continue using his voice and connecting with others.
“I wanted… to have people understand that in Canada we have this choice and it’s very special, that it could easily be taken away,” said Mackie.
“As we know from [Roe] v Wade in the States, these things can be legislated and they can be taken away. So I want people to understand that it’s — it’s a compassionate, human choice.”
MAID remains contentious in Canada. Proposed legislation to extend access to people with severe mental illness has come under fire, with changes now delayed until 2024 as the federal government, provincial and territorial partners, and medical communities assess the best way to move forward.
On P.E.I., only a handful of doctors and nurse practitioners work in this area of health care. Dr. Megan Miller, a family physician with extra training and experience in palliative care, said the focus is on helping patients who want to learn more about MAID understand their options.
“It’s a very rigorous, extremely careful process that, as practitioners, we take extremely seriously. And we do that work in a very, careful and considerate way,” said Miller.
“There is never any pressure for patients. They can withdraw their request or change their mind at any time and we would all 100-per-cent support those decisions.”
We are born. We live. We die. It’s what you do with the middle part of that sandwich that matters to me.
— Craig Mackie
In P.E.I., there were 111 MAID deaths between 2016 and 2021, with the numbers growing each year. Miller describes it as a complex and immensely personal choice, with more people applying for it than actually going through with it.
But either way, she says, talking more openly about death — and MAID — helps us all.
“I think it can be an isolating experience for some patients and people experiencing it,” said Miller.
“I think there are a lot of people in the public who don’t know how to support those patients or talk to them because of the awkwardness around it, and we are all better off if we can share some vulnerability and share the uncertainty and have conversations about it.”
Opening people’s eyes
By early October, Mackie was ready to set a date for MAID. Just as he had been open about his medical journey so far, he continued to write about his final choice.
“I’m not afraid of death. It is a natural part of the cycle of life. We are born. We live. We die. It’s what you do with the middle part of that sandwich that matters to me,” he posted on Oct. 21.
For Mackie’s friends, following his regular posts became a way to stay connected in his final weeks, and add their own comments, photos and music. His Facebook page became a daily destination for those wanting to read his latest account and see what others had shared.
“I think by Craig being so open about it, it’s opened a lot of people’s eyes to the process,” said Peter Murdoch, a friend and former competitive curling teammate of Mackie’s.
“By Craig doing this, I think it’s going to make the conversation, at least among his circle, a heck of a lot easier for people.”
— Christian beliefs seem to underpin the views of many people opposed to assisted dying in the UK. As Prue Leith appears in an illuminating documentary about the practice for Channel 4, Kate Ng argues that allowing others to experience ‘good death’ is the most Christian thing you can do
My mother and I had a conversation about death recently. It wasn’t awkward or prolonged. In fact, it was a very brief exchange in the middle of a Christmas market in Germany while we waited for our bratwurst. “I think people live too long these days,” she told me. “I don’t want to live till I’m 100. And if I get sick, I don’t want to get to a point where it’s not worth living any more.” I agreed with her, we got our bratwurst, and went about our day.
I know many people will think this is morbid, but I’m glad that my mother and I are able to have casual conversations about death. Not because life isn’t precious, but because it’s too precious to dance around subjects like this. We all deserve a good death, just as we deserve good lives. Why not talk about it?
So when Prue Leith announced her new Channel 4 documentary about assisted dying, I was intrigued. Assisted dying, also known as assisted suicide, is defined by the NHS as the act of “deliberately assisting a person to kill themselves” and is illegal in the UK. The British Medical Journal says it is usually used in the context of “giving assistance to die to people with long-term progressive conditions and other people who are not dying, in addition to patients with a terminal illness”.
In short, if someone with a terminal illness or a condition that gets progressively worse wants to end their life, assisted dying would enable them to do so on their own terms. The alternative is to wait days, weeks, or even months to die. Leith argues that assisted dying is the most humane scenario here. I think she’s absolutely right about this.
However, Leith’s son Danny Kruger, the Tory MP for Devizes, strongly opposes his mother’s views. A staunch Christian, Kruger is the chair of the all-party parliamentary group (APPG) for dying well, which “promotes access to excellent care at end of life” and campaigns for better resources for hospice and palliative care services. This is an important and necessary cause. However, the group also “stands against the legalisation of doctor-assisted suicide in the UK”.
This puts Kruger head to head with his mother. Their documentary, Prue and Danny’s Death Road Trip, tackles this difficult discussion between mother and son, and sees them travelling across Canada – where assisted dying is legal – to speak to people who bolster both sides of their argument. At one point in the show, Leith hits the nail on the head when she asks her son if the root of his objection is because of his faith’s belief that “suffering is good for the soul”. Kruger replies: “I think suffering is part of life, but I don’t think we should suffer unnecessarily.” He doesn’t seem to grasp the irony of what he’s saying.
I would like the option to have a good death of my own choosing
Leith also points out that “a lot” of the APPG for dying well’s membership is made up of Christians, yet the individual members seem to avoid acknowledging the influence of their beliefs. They also seem to decline to admit that assisted dying goes against Christian beliefs. “Nobody would use that as their argument,” Kruger says in response. “We don’t go around saying, ‘God says don’t do this,’ I mean, that would be mad.”
But as long as assisted dying remains illegal in the UK, unnecessary suffering will continue. Perhaps he doesn’t want to believe it, but what Kruger is essentially saying – with all his religious bias – is that even if you’re already dying, you shouldn’t be given the choice to leave this mortal plane unless God decides it’s time for you to go.
As someone who grew up in a born-again Christian household, I know exactly how much Christians think suffering is crucial to the human experience. The idea is that the more you suffer in the name of God, the better your chances are of getting into heaven. So it’s hypocritical of Christians like Kruger to say they don’t think people should suffer unnecessarily.
The argument against assisted dying claims that legalising it would result in a “slippery slope that could lead to widespread abuse and distress” of vulnerable people. Members of the dying well group say that placing restrictions around who can access the service would not work, and the net would become wider and wider, even allowing people with no health conditions to qualify. Certainly, these are questions that need to be answered, and any policy drawn up should consider how vulnerable people will be protected. But, given that three-quarters of Britons support assisted dying for people who are terminally ill, MPs must begin having open and constructive conversations about changing the law.
I think about dying a lot. Not in a morbid or harmful way, but I think about how I want to die and what kind of memories I want to leave behind. And if it turns out that I should wind up with a terminal illness or a progressively chronic condition, then I would like the option to have a good death of my own choosing. I want my loved ones to remember me with joy, not with sadness or trauma at having watched me suffer till the end. It would be far more humane than any of “God’s work”.
— Canada’s Assisted Dying Program Exposes Fault Lines in Healthcare
Changes to Canada’s assisted dying program have garnered international controversy. New amendments extend access to assisted death to those with non-fatal conditions. These changes have resulted in dozens of patients applying to escape not illness, but poverty.
Canada’s assisted dying program, known as MAiD (Medical Assistance in Dying), has become an object of international attention in the past few months. Last fall, dozens of stories came out about patients who applied for MAiD not because of sickness, but because of poverty. Disability activists have warned for years about the dangers of making death accessible while social services remain inaccessible. They were largely ignored. But now, this criticism is finding an echo among healthcare professionals and activists, as well as within the broader population.
The MAiD program was enacted in 2016 when the Supreme Court of Canada ruled that it was unconstitutional to deny assisted suicide to persons with a foreseeable cause of death. This measure was welcomed by a large majority of Canadians, who saw it as giving greater autonomy to people facing the end of life and allowing for a compassionate option. But in 2021, the bill was controversially amended to drop several safeguards on access to MAiD, allowing for those whose deaths are “not naturally foreseeable,” qualifying everyone with “a serious illness, disease, or disability” to access MAiD with a separate set of requirements.
Canada’s image in the U.S., particularly among liberals, is of a country that is like America but with something like a welfare state. Unfortunately, this image is sharply divorced from the reality: social reforms earned in the past have been clawed back and gutted through decades of economic crisis combined with austerity, privatizations, and counter-reforms from neoliberal governments. Canada ranks lower on spending and service than most OECD countries and scores even lower than the U.S. on social spending. This austerity inevitably impacts the marginalized the most, One of the groups most victimized by austerity and privatization has been the disabled population.
Conditions for the disabled population in Canada are nightmarish: over 40 percent of disabled people live below the poverty line, and there is no province in Canada where disability pays above it. In the most populous province of the country, Ontario, disability is $1,228 CAD per month, while rent in Toronto averages at $2,500 CAD per month. Disabled people are also overwhelmingly represented in unemployment statistics, with 36 percent of those with a “long term condition or disability” reporting unemployment in the immediate aftermath of the pandemic. Disabled people were even cruelly denied from accessing the CERB program, which paid $2,000 a month — nearly twice what disabled people earn on assistance programs. As author Nora Loreto wrote:
Over the course of the pandemic, expanded MAiD was the most significant change in federal healthcare policy. There have been no permanent significant social supports established for disabled people, guaranteed income projects, financial supports or rent controls, or creation of new financing programs for assistive devices. Instead, the government has said: We will make it easier for you to choose to die, but we won’t give you what you need to have a fulfilling life.
Many stories have come out about people seeking MAiD who would have continued living if not for the circumstances poverty had created in their lives. A woman in Winnipeg received assisted suicide because, as her conditioned worsened, she could not afford the increasing costs of at-home care and the public system was no longer able to support her needs. She wrote to her loved ones in her obituary, “Ultimately it was not a genetic disease that took me out, it was a system.” Two women in Ontario, both with Multiple Chemical Sensitivities (MCS), a condition in which one or several common chemicals create a severe, debilitating reaction, applied for MAiD after both fighting and failing to find accessible housing. One woman, Denise, said to the media that she applied to MAiD “because of abject poverty” while living on disability payments as well as her inability to gain accessible housing after seven years of applying. The other woman, Sophia, said in a video eight days before receiving MAiD that “the government sees me as expendable trash, a complainer, useless and a pain in the ass” after two years of attempting to access smoke- and chemical-free housing.
MCS as a condition is largely manageable; both women said that when they were not exposed to the triggering chemicals in their daily lives, they could function and live happy, healthy lives. They also would likely not have applied to MAiD if not for poverty and lack of access to the support systems they need. Rather than increasing the freedom and dignity of patients, MAiD has exposed the deep fault lines within Canadian social infrastructure. The system in place for these vulnerable patients is so inaccessible and underfunded that death becomes the preferable — and easier — choice. Effectively, MAiD has replaced access to public systems for the most “burdensome” patients. Critics say that the ambiguity and permissiveness of MAiD laws are encouraging this situation. Trudo Lemmens, a professor of health law and policy at the University of Toronto, argues that Canada’s laws have become the “most permissive in the world:”
In the context of medical assistance in dying, we’re getting rid of this idea that we will first try the least interventionist measures. There is no jurisdiction in the world other than Canada that frames this as just a medical intervention.
This framework has led to several disturbing cases, such as Roger Foley, a man with Degenerative Brain Disorder who was hospitalized in London, Ontario. He became so alarmed at how frequently he was being asked about euthanasia, he began recording the conversations. In one of these conversations, the hospital’s director of ethics mentioned while “discussing” MAiD with him that continuing his care to live would cost the hospital “north of $1,500 a day.” Defenders of MAiD will defend that the lack of regulations give autonomy to patients when, in reality, they only offer the choice of death while accepting that the choice to live is denied. As Lemmens stated in the same interview, “We’re basically sending the message that persons with disabilities who are not dying have an understandable reason to end their life. And this is discriminatory.”
In a concession to rapidly growing pressure from psychiatric and medical experts, the Canadian federal government delayed the expansion of MAiD to include those suffering from psychiatric illnesses until 2024. While it is a good thing that disability activists and experts were listened to, there is no amount of legal or ethical tinkering with legislation that can do away with the systemic discrimination against disabled and poor people built into the capitalist system. As the current crisis of social services across the whole of North America shows, without the proper resources needed to function, having a “right” to healthcare or welfare is just words on paper: the extra costs needed to accommodate the sick, poor, disabled, and marginalized groups through social spending are expendable. When a crisis hits and profits are threatened, these are the first costs to be cut. It is easier — and cheaper — for the capitalists to administer the right to death, framing it as “dignified dying” and “compassionate,” than providing funding for the right to live.
As socialists, we are not opposed to assisted suicide, which in the majority of cases is a dignified alternative to prolonged suffering. But as long as disabled people are denied the means to a dignified life where their needs are met by society, assisted suicide programs will inevitably be coercive and discriminatory. The only way to ensure that the right to death does not come at the expense of the right to life is through a universal, accessible, fully-funded healthcare system under the democratic control of the working class and inclusive of everything from disability to psychiatric illness. But the crisis of the capitalist system has shown the inability of this system to provide for the needs of society, pushing these services to the brink of destruction — it is only through the socialist reconstruction of society that the resources of the whole economy can be mobilized to meet the needs of all, rather than the private riches of a few wealthy capitalists.
— The proportion of donors who chose MAiD increased by nearly 15 per cent last year, according to Transplant Québec.
By La Presse Canadienne
Quebec saw a record number of referrals for organ donations in 2022, including a significant increase in donations made in the context of “medical aid in dying” (MAiD) cases, according to the latest annual report from Transplant Québec.
The organization announced Wednesday that the proportion of donors who chose MAiD increased by nearly 15 per cent last year. Most of the cases involved patients who had a neurological or neurodegenerative disease.
Transplant Québec noted that the number of donations made in the context of MAiD has tripled over the past five years. About 10 per cent of cases of MAiD in Quebec represent potential donors, a proportion based on diagnoses compatible with organ donations, which translates to the equivalent of 366 donors.
“This is not only an opportunity to increase the number of organ donors in Quebec, but also an incredible opportunity to see more people benefit from a transplant,” Transplant Québec director Martine Bouchard said in a statement. “In addition to increasing the number of transplant recipients through the generosity of their gesture, these (donors) also gave meaning to their condition by allowing other lives to be saved.”
In total, Transplant Québec received 854 organ donation referrals in 2022 and 483 people received organ transplants. The organization noted that 78 lung transplants were carried, an “unmatched” number, for the second consecutive year.
More than 170 donors in Quebec allowed 584 transplants to be carried out.
The waiting times for lung or kidney transplants has shortened considerably over the past 10 years, according to the report. As of Dec. 31, 2022, 913 people were on Transplant Québec’s waiting list.
In proportion to their population, Montreal, Saguenay—Lac-St-Jean and the Eastern Townships are the regions with the highest number of potential donors, according to Transplant Québec.
In September 2019, Alain du Chemin was diagnosed with a brain tumour.
At the time, he was living with his partner of eight years, Paul Gazzard. The pair had met on Grindr in 2011 – Paul was such a novice to the app that he couldn’t get his profile picture the right way up, and Alain sent him a cheeky message saying he had neck ache from trying to look at his upside-down face.
“For some bizarre reason I thought it was hilarious, and we just got chatting, met up, and then the rest is history. Very quickly I moved in with him,” Paul recalls.
Their life together was a happy one, but after months of suffering with headaches and disorientation, Alain was told he had a tumour, and that it was terminal.
He was a pragmatic person, Paul says, and immediately started researching his options.
“As he was reading more and more about what the end game might be, he discovered a lot of things – that people with brain tumours, towards the end, may not have all their faculties, can’t speak properly, can’t do a lot for themselves, become really confused, and so on. And he decided at that point that wasn’t really something he wanted to go through.
“That’s when he started looking into the whole assisted dying process and what it entails.”
Assisted dying describes the act of a terminally ill person being prescribed drugs, at their request, that end their life. A UK parliamentary briefing uses the term to cover instances where the patient self-administers the drugs, and where healthcare professionals administer them on request.
By that time, Alain was living back in Jersey, where he was from originally. The problem was that assisted dying was illegal there, as is the case in most European countries.
One of the few places where assisted dying is possible is Switzerland. Many people from across the world flock to the country so they can die on their own terms.
It took a while for Paul to realise just how serious Alain was about dying in Switzerland.
“He started saying, ‘I want it to be a celebration, I’d like to have certain close friends go with me, we’ll have a great party before I go off’. It was quite a lot to take in.
“Previously I had no view on assisted dying at all. I mean, thinking about it, why would you unless you or someone you loved were in that situation?
“You could tell he was absolutely adamant this was what he wanted to do… I think what I struggled most with was timing, really. When do you know now is the right time to go?”
‘Laws must change to a more humane model’
In order to undergo assisted dying, you must be considered competent to make that decision at the time of death. That presents specific challenges for people with terminal illnesses like brain tumours – for Alain, it meant he would have to die when he was still relatively healthy.
“He was fully supported by me, close friends, his family – we knew the sort of person he was and if he had something in his head, it was going to happen.”
While Alain explored his options, he and Paul worked on making the most of their time together. On Valentine’s Day 2021, they got married with around 20 guests in attendance.
Shortly afterwards, Alain’s condition started to deteriorate rapidly.
“At that time, I think he was feeling things were changing quite a bit, and the planning really had to be kicked up a bit,” says Paul.
“We have a friend who’s a pilot and he was able to get a private plane to take us to Switzerland, which was pretty much one of the only ways during that time [at the height of the COVID-19 pandemic] that we were going to be able to get there.”
The cost of hiring a private plane was going to be tens of thousands of pounds – and it caused “an enormous amount of stress”.
In the face of all those pressures, they ran out of time. Alain reached the point where he would no longer be considered competent enough to choose to undergo assisted dying.
On 1 May, 2021, Alain passed away in a hospice after a period of rapid deterioration.
Alain never had the chance to go through assisted dying – but Paul says he might have if the law was more humane.
That’s why Paul is now a campaigner for better assisted dying laws. He’s working with Dignity in Dying, a campaign group that believes everybody should have the right to a good death.
YouGov polling shows there’s broad support in the UK for a change in the law. Three out of four people believe terminally ill adults should be allowed to choose when their lives draw to a close.
“It’s about choice,” Paul says.
“I think it’s only right people should have the option available to them.”