As assisted dying broadens, countries wrestle with new ethical lines

Federico Redondo Sepúlveda and his mother, Martha Sepúlveda, were inseparable.

So when she fought for her right to an assisted death – to relieve her suffering from a progressive neurological disorder that she was diagnosed with in 2018 – he was shaken. She’d only heard that Colombia allowed euthanasia because Mr. Redondo happened to share with her the topic of his law school class that day.

As she pushed for her own access – after the Constitutional Court of Colombia extended the right to those like her without an immediate terminal prognosis in 2021 – he would avoid the subject, leaving the table to make a call or take out the trash. “It’s always been just me and my mom,” says Mr. Redondo, an only child. “I’d say things like, ‘Ma, you’re just going to leave me on my own? You have so many things that are worth living for!’”

Yet over time, as her illness progressed and a new reality dawned, he came to reframe discomfort from her perspective, from a woman whose core value she had long imparted to her son: “to live was to decide.” On Jan. 8, 2022, she became one of the country’s first citizens to die in a case with a nonterminal prognosis, her son at her side.

A month earlier, in Toronto, another mother and son were facing a voluntary death, but this time it was the son who wanted to die.

Sharon Danley says her son, Matthew Main, was diagnosed at birth with multiple conditions, underwent dozens of surgeries as a child, and complained of chronic physical pain into adulthood. He was eligible for Canada’s medical assistance in dying, known as MAiD, after the law was amended in 2021 to include those whose deaths aren’t “reasonably foreseeable.” 

Her son had told her in 2020 about his intention to take advantage of MAiD, Ms. Danley says. She was against it from the start. “When someone tells you that they’re going to be euthanized, it’s like it brings you to your knees. You can’t fathom it, and that waiting for the day to happen is excruciating.”

Their relationship, already contentious, deteriorated so much that, by the time his appointment to die arrived, he, along with family and friends, had shut her out completely. When the time came on Dec. 12, 2021, Ms. Danley was not at her son’s side. She was at her apartment blocks away in downtown Toronto.

Colombia and Canada sit at the forefront of the Americas – and indeed the globe – in allowing assistance in dying. While some consider the practice to be the ultimate act of compassion, others worry it’s gone too far.

Both countries are among a handful that allow it and an increasing list of those considering it – and expanding eligibility. They join Belgium, the Netherlands, and Luxembourg in allowing euthanasia for those who are not terminally ill. Canada is in the middle of heated debate as it is expected to move further in March when MAiD could become available to those with mental health disorders as the sole justifying condition. 

The notion of assistance in dying as an act of mercy is centuries old. But as it has been inscribed in state law in the last generation it has become part of the culture wars in the West, pitting right against left and the secular against nonsecular. It goes much deeper than a political wedge issue though. 

As countries continue to adopt laws or expand what they deem acceptable, they are reshaping the debate in new ways. No longer is this merely a question of how to address older people with a terminal diagnosis. What are the ethics of the state sanctioning suicide for a young person struggling with depression? What role should nations play in determining when death is preferable to pain? In other words, the debate raises questions about what constitutes discrimination and equity of rights, what makes a person vulnerable, and ultimately what a caring society truly looks like.

Euthanasia – meaning literally the good death – has roots in ancient Greece, where hemlock was used to quicken a patient’s death. In modern times, laws around assisted dying, including euthanasia, and assisted suicide first took shape in Europe. 

Today, eligibility for euthanasia, the practice of a medical practitioner ending a patient’s life at his or her explicit request, is most expansive in the so-called Benelux countries; it has been legal for two decades in Belgium and the Netherlands, and since 2009 in Luxembourg. Euthanasia also became legal in Spain in 2021 and would be in Portugal if not for two presidential vetoes. Laws on assisted dying are being vigorously debated in France and Scotland.

Assisted suicide, whereby the patient wishing to die administers the fatal dose, became legal in Austria last year and has been legal in Switzerland since 1942, although not so for euthanasia. A strong distinction between the two is also made in Germany, which is still reeling from the history of Nazi-era mass murders by involuntary euthanasia of people with disabilities. 

Worldwide at least 25 jurisdictions now allow some form of assistance in dying – including 10 countries, 11 U.S. states, and four Australian ones. But the vast majority of the world still shuns active euthanasia. It’s not legal anywhere in Asia, Africa, or the Middle East.

In Latin America, the conversation is starting to shift, as societies move away from both the dominance of the Roman Catholic Church and the authority of doctors over patients’ rights. When Colombia legalized euthanasia for terminally ill patients in 1997 in a court-driven move, it was a regional outlier. It wasn’t until 2015 that the first procedure was approved, after a court ruling ordered the Ministry of Health and Social Protection to regulate it. 

Between 2015 and October 2022, more than 329 patients in Colombia died by euthanasia. In more recent years, Argentina, Chile, and Uruguay have tested legislation to make it legal.

For Shanthi Van Zeebroeck, a researcher in interdisciplinary law and biomedical sciences who has conducted qualitative research on the euthanasia practices in Belgium, it is no surprise that the Benelux countries, which boast high quality of life, pioneered euthanasia. She sees culture as a key reason for the split between the developing world and wealthy nations on the subject.

“People think you oppose or support it based on [religious commands], but it has nothing to do with it. It’s based on the way you are raised,” she says.

In many Western countries, citizens are accustomed to freedom, autonomy, and convenience. “As soon as your quality of life is compromised, [many ask] then what is the point of living?” 

But in developing countries, she says, most are raised to accept sacrifices. That in turn shapes notions of what constitutes dignity and compassion. If a person is nearing death with a health issue, the expectation is they should suffer through it. 

Canada has quickly become one of the world’s most permissive jurisdictions on assisted dying.

Assisted dying in Canada is rooted in a 2015 Supreme Court decision that reasoned that to deny the possibility of an assisted death to someone whose illness is “grievous and irremediable” and whose suffering is “intolerable” would deny those citizens protections under Canada’s Charter of Rights and Freedoms. A 2021 Ipsos poll, found that 87% of Canadians support that decision.

The MAiD legal framework was created to regulate the ruling, though the law initially was more restrictive than the court’s criteria because MAiD as first written required a “reasonably foreseeable natural death.” A 2019 court ruling in Quebec deemed the “reasonably foreseeable” criteria unconstitutional however, and so the federal government removed that requirement in March 2021 with Bill C-7, opening up the procedure to patients like Mr. Main, even though he wasn’t imminently dying.

Bill C-7 excludes those whose mental health disorder was the sole underlying illness – an exclusion that was set to expire in March 2023. But the federal government announced in December it will seek to delay the expansion. 

In 2021, there were 10,064 MAiD provisions in Canada according to government figures, bringing the total number of medically assisted deaths since 2016 to 31,664 – the vast majority older Canadians with terminal diagnoses. A 2020 study found that MAiD recipients in Ontario tended to be wealthier, less likely to be in institutional care, and more likely to be married than the average Ontario decedent.

Dr. Stefanie Green calls Canada a global leader today because it frames MAiD as a rights-based issue, guaranteeing the possibility of care for all eligible Canadians. 

“This is about wanting to help someone who is in a dire situation,” says Dr. Green, who is the president of the Canadian Association of MAiD Assessors and Providers and author of the book “This Is Assisted Dying.” While each case is different, she says, the one constant is the relief she sees when her patients learn they are eligible. “They feel emboldened, empowered ... the power of that possibility is something I am struck with over and over again,” she says. Sometimes that’s enough to make them forgo the provision.

In comparison, in the United States assisted suicide has been enacted by popular vote or legislatures in various states. That makes assisted dying vulnerable to “societal mood,” she says. And euthanasia remains illegal across the U.S. – putting assisted dying out of reach for those unable to self-administer treatment.

Dr. Green was a family practitioner on Vancouver Island with a strong focus on maternity and newborn care for over 20 years, delivering babies whose photos still decorate her office. But she sees parallels in her end-of-life work. She was one of the first clinicians in Canada to provide MAiD, in 2016, and to date, has helped around 300 patients die.

“Assisted dying is less about death than it is about how we want to live,” she says.

But where she sees world leadership, other doctors worry Canada is moving too fast and too far. Dr. Sonu Gaind, incoming chief of psychiatry at Sunnybrook Health Centre in Toronto, calls Canada a “cautionary tale for the world.” 

Dr. Gaind, the former president of the Canadian Psychiatric Association, says he is not a conscientious objector to MAiD. He is the physician chair of his current hospital’s MAiD team assessing eligibility. But he announced he would be stepping down when Canada expands eligibility to psychiatric patients.

At the heart of his concern is whether mental illness can accurately or scientifically be assessed to be “irremediable,” and whether offering a death service to those with suicidal ideation is ever a compassionate way forward. “We will be providing MAiD to people who are in their darkest periods of despair, who can’t see a reason to live,” he says. “We will be providing death under false pretenses, and I can’t participate.”

In countries where patients are already able to access assisted dying for mental health reasons alone, such cases remain a small fraction of all assisted deaths. Of 7,666 assisted deaths in the Netherlands in 2021, for example, the vast majority were people with terminal diagnoses, and only 115 cases involved those diagnosed with severe psychiatric disorders.

Still, Dr. Gaind points to a 2016 study of euthanasia and assisted suicide of patients with psychiatric disorders in the Netherlands from 2011 to 2014. Although the sample size is tiny with just 66 cases, that study indicated a gender disparity: 70% of recipients were women.

Cases for minors and psychiatric patients, where the judgment of the patient is called into question, have sparked the fiercest ethical debates – and legal scrutiny. In October a Belgian woman in her 20s was offered assisted dying due to a mental crisis after having lived through a terrorist attack at the international airport in Brussels in 2016. The Netherlands’ first criminal court cases over euthanasia concerned women suffering from mental disorders, though the cases did not result in convictions of the doctors involved. 

For the past two years in Canada, a parliamentary committee has been exploring a number of contentious issues related to assisted dying. A separate expert panel has reviewed the issue of MAiD and mental health with respect to the safeguards that are in place (including that no patient can seek death in a crisis). The government’s last-minute effort to delay it has been called disappointing and discriminatory by right-to-die advocates.

While Dr. Green has already assisted people with mental health disorders with concurrent physical illness, she says in some ways Canada is entering new territory – she feels as she did in 2016, knowing she will be searching anew for her own comfort level and balance. 

“It is contentious, and it should be contentious,” she says. “But nobody does this lightly; nobody takes this as a tick, tick, tick, tick, tick box. We do it cautiously, carefully, and compassionately.”

For Dr. Gaind, however, no safeguards are enough when the country offers assisted dying to those not dying. The very name MAiD today, he says, has become a misnomer, and could attract the most marginalized in the name of autonomy. 

“We haven’t had a slippery slope in Canada. There’s been no slope at all, there’s been a cliff, and we have fallen over that cliff,” he says. “This is what I call false autonomy and false compassion.” 

Part of the challenge for Canada as it tests the tolerance to assisted dying is that it is dealing with patients who do not look like what society might expect: older or frail.

When Canada introduced Bill C-7 for those whose deaths are not “reasonably foreseeable,” the new legislation received harsh rebuke from many advocates of disabled people. Three United Nations experts, including the special rapporteur on the rights of persons with disabilities, condemned the move for creating or reinforcing an assumption that “it is better to be dead than to live with a disability.”

And in the past year, as media outlets have highlighted people who say they are seeking MAiD because they can’t live on their disability checks, many have conflated Canada’s safety net and its assisted dying laws. British magazine The Spectator asked over the summer: “Why is Canada euthanizing the poor?”

Amir Farsoud, who was born in Iran but left with his family amid the Iranian Revolution and eventually landed in Toronto, answers plainly that he’d rather be dead than homeless.

Mr. Farsoud has chronic pain from a back injury and a series of other medical issues that he says have gotten progressively intolerable. But he only started to seek the first of two required signatures from a clinician to die on Oct. 4, after receiving a notice from his landlord in St. Catharines, Ontario, that he was going to sell the building where Mr. Farsoud currently resides. With a disability check that hardly matches housing inflation across Canada, Mr. Farsoud says he refused to die on the streets.

Mr. Farsoud says since MAiD expanded he has known – and still knows – that he will seek it one day. When he received the first approval, he felt “a mixture of fear – and relief,” he says. “The relief was that at least I could make that choice, I could at least have the control that I had been denied in life.”

But he had to wait 90 days for a second signature, as required by Canadian law when death isn’t “reasonably foreseeable” – a waiting period that Mr. Farsoud fully supports. In that time, the local news ran his story. It generated an outpouring of sympathy, including from an anonymous woman who launched a GoFundMe page that has since raised tens of thousands of dollars. 

That was enough to make him forgo pursuing the second signature – for now. “What changed really is hope,” he says.

When Alex Schadenberg, executive director of the Euthanasia Prevention Coalition, hears cases like this, it’s not the Canada he recognizes. “We talk about this progressive, caring society that we live in in Canada where everyone has equality,” he says. But he says in reality it can be quicker to seek MAiD than access proper psychiatric care or find affordable housing. “I just don’t see how this can lead to what we see as a caring society.”

But right-to-die advocates say that those who have been against MAiD all along on moral or religious grounds have sensed an opportunity to sow doubt while changes are afoot and society is jittery. 

“I think it’s important that this has brought a lot of attention to the fact that there are not enough social supports or disability support,” says Helen Long, the president of Dying With Dignity Canada. “But you can’t get assisted dying because you don’t have social supports. You can get assisted dying because you meet the entire eligibility criteria.”

Mr. Farsoud says the outpouring of support for his individual case has shown him true compassion. But he bristles at the hypocrisy he sees among those caring so fervently about the sanctity of life but not a person’s life.

“Society has decreed that we’re not human enough; they don’t wish to care about how we live,” he says. “But when you get to the point where you choose that you’re going to die, it becomes, am I going to die well or poorly? And when somebody allows you to pick the well over the poorly between those two choices, if that’s not an act of compassion, I don’t know what is.”

Compassion is the last word that comes to mind when Ms. Danley considers her last year. She does hold some views rooted in conspiracy theories including that euthanasia is part of a larger eugenics movement and cost-savings plan by the government. Still, her son is gone and she says she felt abandoned by a government and medical community that took him away but did nothing to support a mother left behind. “Nobody called to say, how are you doing? Would you like to partake in a program? It doesn’t come with any grief counseling.”

Until the end, she says she really didn’t think it was going to happen. Her son had a history of suicidal ideation, she says. She was used to his highs and lows. Recently he had redecorated his downtown Toronto apartment, she says, and weeks prior to his date he asked her for money to go to New York City – both signs to her that he was doing well.

Throughout that year, she told him if he changed his mind, she was there to talk. But that never came – and she’s been left without closure, and with a rift in her family. “This is the fallout that nobody’s talking about.”

In Canada, support groups have arisen to help families navigate the process. Signy Novak, a nursing educator in Vancouver, launched the MAiD Family Support Society, formerly known as Bridge 4 You, in April 2021 after her father received MAiD and she realized there were few resources for families to ask the simple – or difficult – questions.

Today, her nonprofit counts 30 volunteers across Canada who have guided about 150 families in the past year. Most of them support their loved one’s decision, but sometimes one family member won’t on religious or moral grounds. Some have given little thought to MAiD previously and have to come to terms with their own ethics. Others simply aren’t ready to let go. 

“Families are carrying all this stress leading up to the death, and if someone goes through with it but a few family members don’t agree, that grief understandably becomes more complex,” she says. 

In Colombia, Ms. Sepúlveda wasn’t supported by her mother. And then her case became a lightning rod within Colombian society – with the Catholic Church speaking out about it and the public debating whether she was too happy to die.

The court-driven right in Colombia, like is the case in Canada, is rooted in human rights. “This isn’t about providing an option to end one’s life, it’s much bigger than that,” says Dr. Julieta Moreno Molina, a bioethicist who has served on the Health Ministry’s committee on assisted dying for the past six years. “In 1997 [the court] said that to die with dignity was part of living with dignity.”

But a true understanding of that case is lost amid polarization, she says. 

“When the topic comes up in the media because of a new resolution or because there’s a case like [Ms. Sepúlveda’s], you find a very divided, uninformed society taking on two opposing positions: Either the patient is in charge of their own life and their rights, or the patient isn’t in charge of their own life and their rights,” Dr. Moreno says.

Ms. Sepúlveda was featured in various news coverage for what would have been the first case of a Colombian dying under the 2021 court ruling. In one broadcast, she and her son were filmed at a restaurant, smiling. Society began to debate: Should someone so content be choosing death?

But they misunderstood the smile, says her son, Mr. Redondo. It was one of relief: the very kind Mr. Farsoud articulates. “The ideal is that no one will ever have to make such an extreme decision,” Mr. Redondo says. But not everyone has that privilege.

Nearly a year later, he travels across Colombia for work, practicing law and building his life as a young adult. But sometimes he will still pick up the phone and start dialing his mother’s number before he remembers. 

“I wouldn’t say I’m happy. Or comfortable with her being gone,” he says. “Because life was so much easier for me with her in it. But at least I feel calm.” 

Sara Miller Llana reported from Toronto, Whitney Eulich from Mexico City, and Dominique Soguel from Basel, Switzerland.