A year-long series looking back on the most significant moments of the past 25 years, how they changed our world, and how they will continue to shape the next 25.
Stefanie Green is a MAID practitioner and the Founding President of the Canadian Association of MAID Assessors and Providers (CAMAP). She is medical adviser to the B.C. Ministry of Health MAID oversight committee, moderator of CAMAP’s national online forum, and has hosted several national conferences on the topic. She is clinical faculty at the University of British Columbia and the University of Victoria, and is the author of This Is Assisted Dying: A Doctor’s Story of Empowering Patients at the End of Life.
In 1992, I was a medical student in Montreal taking a mandatory course in biomedical ethics. In our class, we explored thorny clinical scenarios and discussed precedent-setting legal decisions, but thanks to a woman named Sue Rodriguez, there was a riveting and equally relevant story unfolding in the Canadian headlines in real time.
Ms. Rodriguez was only 41 years old when, in 1991, she was diagnosed with amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease. After learning what lay ahead for her, she wanted a doctor to be able to give her medication to end her life when she felt the time was right, so that her death could be quick and certain.
She captured the world’s attention, along with that of this young medical student, when she asked a simple but powerful question: “If I cannot give consent to my own death, whose body is this? Who owns my life?”
I had never really considered the notion of assisted dying before this, and her questions were profoundly challenging.
Sue Rodriguez is supported by MP Svend Robinson as she gets out of a car on the way to a press conference in Victoria, B.C., on Sept. 30, 1993.Ward Perrin/The Canadian Press
Ms. Rodriguez’s lawyer, Chris Considine, tells the story of a memorable moment that happened along her journey to the Supreme Court of Canada. After a press conference following a loss at the British Columbia Court of Appeal, Ms. Rodriguez rolled out of a downtown location in Victoria, only to be greeted by an astounding public reaction. Traffic stopped. Pedestrians stood still. People spontaneously started clapping. “The echo of the applause along the street was extraordinary,” said Mr. Considine. “It was an extraordinary moment, realizing how much people cared about what Sue Rodriguez had done.”
As many readers will know, in 1993, Ms. Rodriguez narrowly lost her challenge at the Supreme Court for the right to an assisted death, but her story captivated Canadians and sparked a national discussion that – eventually – led to profound change when, 22 years later, the Supreme Court of Canada ended the prohibition on assisted dying.
Formally known as Carter vs Canada, more simply referred to as Carter, Canadians will remember the case as one initiated by the family of Kay Carter, a woman with severe spinal stenosis who went to Switzerland to have an assisted death in 2010. The family returned to Canada inspired to fight for a change in the law so others might not need to travel abroad to obtain the care they believe they require, and in recognition that not everyone is able do so.
Lee Carter, red scarf, and her husband, Hollis Johnson, in Switzerland with her 89-year-old mother, Kathleen "Kay" Carter, who suffered from spinal stenosis. Kay Carter's family accompanied her there in January, 2010 to end her life.BCCLA photo
They were joined by Gloria Taylor, another woman with ALS, who understood the progressive, terminal nature of her diagnosis and wished for the right to end her life peacefully, with the assistance of a doctor, at the time of her own choosing and when she felt her life was no longer worth living.
Gloria Taylor, who won a doctor-assisted suicide challenge in B.C. Supreme Court, smiles during a news conference at the B.C. Civil Liberties Association in Vancouver, B.C., on June 18, 2012.DARRYL DYCK/The Canadian Press
On Feb. 6, 2015, the Supreme Court of Canada ruled unanimously that existing laws unjustifiably infringed upon the rights of certain individuals under Section 7 of the Canadian Charter of Rights and Freedoms. The Court determined that individuals, specifically competent adults who are suffering intolerably with a grievous and irremediable medical condition, should have the right to choose to end their suffering through an assisted death. This landmark case paved the way for legislation allowing medical assistance in dying (MAID) in Canada.
I remember where I was when the Carter decision was announced. Like many Canadians, I had followed the case from the beginning, but as a practising clinician, I viewed it through a different lens. I had witnessed deaths that were well supported, but just as many that could have been better. I understood the legal ruling, and could see its potential to ease suffering, yet I wondered who would take on the work. My long-standing interest in the intersection of medicine, ethics, and law drew me further in. To me, assisted dying represented the essence of patient-centred care. After 22 years as a family physician, with a strong focus on maternity and newborn care, I chose to shift my practice and began working in assisted dying.
According to Health Canada’s annual reporting, since 2016 more than 60,000 Canadians have received an assisted death. The choice has been of profound importance to each and every one them, and there’s been a ripple effect touching a great many more; their family, friends and loved ones. All of the people I have worked with have expressed tremendous gratitude for this care, and many others have expressed their relief in simply knowing the option exists.
The Carter decision has also had an impact around the world. At the time of the Carter decision, there were six other countries where the practice of assisted dying had already been legalized. Today, there are 18 countries with court decisions or legislation, either implemented or pending implementation, allowing some form of medically assisted dying. Many have been profoundly affected by the lessons learned in Canada.
But there is another, arguably more pivotal moment I know of without which Carter would not have happened – a less obvious but still momentous event in the Parliament of a different country.
The Netherlands was not the first country to permit assisted dying. It’s been legal in Switzerland since 1942. The Northern Territories of Australia briefly became the first jurisdiction in the world to legalize assisted dying in 1995 before the federal government overturned the legislation in 1997. Meanwhile in Oregon, voters passed the Death with Dignity Act in 1994, making Oregon the first U.S. state to allow assisted dying, although it took until October, 1997 to implement the practice. But I believe that the day that the Dutch Parliament legalized assisted dying was the most significant moment in assisted dying of the past 25 years.
Societal debate around assisted dying in the Netherlands is often traced to the case of a physician, Dr. Truus Postma, who, in 1973, agreed to help her own mother relieve her intolerable suffering and end her life after repeated requests for an assisted death. While the court found the physician guilty under the law, it imposed a short suspended sentence and acknowledged that a physician does not always have to keep a patient alive against their will when faced with pointless suffering. This decision reflected a modern understanding of the limits of medical care and the value of a patient’s self-determination.
There were other influential cases, but the one heard by the Dutch Supreme Court in 1984 appears to have been the most noteworthy. The Court concluded that a physician, Dr. Piet Schoonheim, who had offered an assisted death to a suffering 95 year old had acted in a situation of “necessity” – that is, the physician had been confronted with a conflict of duties: the duty to relieve suffering and the duty to not do harm.
Around the same time, there was a growing number of health care providers confronted with similar conflict, as the AIDS epidemic was creating a growing number of young patients facing certain and painful death. Dr. Schoonheim was acquitted from prosecution, and this recognition of duelling duties remains at the heart of the rationale for the Dutch legalization.
Meanwhile, the Dutch Medical Association took an affirmative position regarding the legalization of the practice, and they strongly encouraged a framework where physicians would report any such life-ending acts and called for the elimination of legal barriers for any who agreed to do so.
And so we saw a seemingly inevitable but nonetheless pivotal moment in global healthcare. After nearly three decades of societal discussion and debate, after multiple court cases establishing case law, with the support of the national medical association and their suggested framework for practice, and in accordance with increased public support – from nearly 50 per cent in 1996 to 90 per cent in 1998 – the Dutch parliament decided to act, and assisted dying was legalized in April, 2001.
The Termination of Life on Request and Assisted Suicide Act came into effect on April 1, 2002, to regulate the ending of life by a physician at the request of a patient who was suffering unbearably without hope of relief.
Some might consider it a whimper after the bang because it was the formalization of a practice that was, to some extent, already happening in a society that had by that time evolved in its sentiment, attitude and acceptance of the care. But in laying out one of the first legal frameworks, by establishing strict eligibility criteria and robust safeguards, by mandating oversight, the gathering of evidence, and the promotion of research about the practice, this less obvious moment – the legalization of assisted dying in a small country in Europe – became one of the most significant moments in healthcare of the past 25 years. Its outcome changed the perspective and eventually the possibilities for millions of people around the world, and it will certainly help shape the deaths, and the lives, of many more in the next quarter century.
The effect was immediate and cumulative. A comprehensive legal framework was determined, and this became a reference point for other countries considering similar legislation. Belgium followed suit in 2002, and Luxembourg in 2008.
Personal testimonies and media coverage of patients advocating for their rights had created empathy and understanding. This took conversations about end-of-life choices more mainstream, reducing stigma and fear around the topic.
Legalization ignited global ethical debates surrounding the principles of autonomy, dignity, and the definition of suffering. It challenged traditional views on medical ethics and the very role of healthcare providers in end-of-life care. It prompted changes in healthcare practice, particularly in how end-of-life care should be approached.
The "Raging Grannies" sing a euthanasia-themed song while demonstrating outside the B.C. Court of Appeal in Vancouver, on March 4, 2013. Underway inside the court was a hearing into the federal government's appeal of the B.C. Supreme Court ruling that struck down the laws making physician-assisted dying illegal.DARRYL DYCK/The Canadian Press
The Dutch system emphasized the importance of palliative care and the value, the necessity, of open, honest discussions about patient preferences, needs and goals. And of course legalization inspired advocacy for improved end-of-life care in general and for assisted dying in particular. Perhaps most significant, however, was that systematic empirical data-gathering was mandated, and ongoing research was encouraged.
From the earliest days of practice in The Netherlands, an annual review of every case of assisted dying has been conducted by regional committees. Research on the frequency and characteristics of the practice of assisted dying, as well as other end-of-life decisions, is also required. It was this data, carefully gathered and analyzed, which was presented at an international conference I attended in Amsterdam in May of 2016. By then I was a physician with more than 20 years of clinical experience, having witnessed both the successes and the failures that modern medicine was capable of generating. That data helped convince me that assisted dying is a legitimate field of healthcare when nestled within a strict legal framework and buttressed by robust safeguards, careful oversight, and objective, reportable outcomes.
Beginning in 2000 and for every five years since, a research group in the Netherlands also conducts a death certificate review. Essentially, a representative sample of death certificates where euthanasia was cited as the cause of death is reviewed, and medical records for those cases are analyzed. Reviewers consider if the assisted death adhered to legal requirements. Reports summarize trends, compliance rates, and recommend any potential improvements. From this work, an impressive knowledge base has now been generated.
By the time Justice Lynn Smith was considering the Carter case in Canada in 2011, she had access to data from over a decade of practice in both Oregon (more limited) and the Netherlands.
Lynn Smith of Vancouver is invested as an Officer of the Order of Canada by Gov. Gen. Mary Simon on Feb. 22, 2024. Smith, a lawyer, academic and former justice of the Supreme Court of British Columbia, has advanced Canadian law, notably with respect to Charter equality rights and medically assisted dying.Justin Tang/The Canadian Press
She had details, data, and evidence to weigh and a framework she could evaluate. There was now evidence that public control and transparency of the practice of assisted dying was possible. There was data to confirm that the legalization of assisted dying in the Netherlands did not result in a “slippery slope” for medical end-of-life practices. There was no evidence of any increase in nefarious practice (such as an increase in involuntary deaths), and there was no feared expansion of law. She concluded assisted dying could be implemented in a safe and successful manner.
This data-driven conclusion, alongside new jurisprudence and increased societal support for the practice, is what allowed for her original decision of the Carter case. And that changed everything for Canada.
Canada now has nine years of its own data to share. Opponents of MAID will try to debate the meaning of this data, and I will leave that for other forums, except to say that objective information from various regulatory bodies, oversight authorities, Canadian research, and from Health Canada’s annual reports confirm that MAID is safe, that regulatory compliance is high, that it is felt to be a valued service by all of those involved.
Moreover, when compared to people who die naturally or those who live with chronic illness, the people who receive medical assistance in dying in Canada are, by any objective measure (such as income, material resources, education, ethnicity, palliative care access) primarily the socio-economically advantaged. Canada’s experience has now joined that of the Netherlands and helped inform other countries which have considered and have now legalized changes to allow for this care, such Australia, New Zealand and Spain.
As more countries consider or implement assisted dying laws, the Dutch model, with its foundational legal framework and valuable data-generation, will likely continue to serve as a reference point. Newly implemented programs in Canada, Australasia and Europe, which have been heavily influenced by the Dutch model, will add to our understanding and perhaps acceptance of this compassionate care. The concurrent push to improve palliative care services in all of these same countries, of which there is much data – on the increased funding for and the increased utilization of palliative care services – and the recognition that the integration of assisted dying and palliative care best serves our common patients will hopefully lead to an overall improvement in end of life options regardless of one’s personal choice.
As a practitioner of assisted dying for nine years now in Canada, I can tell you that one of the lessons I have learned is that the mere possibility of this option is therapeutic. After a rigorous assessment, if I can tell someone they are eligible for an assisted death, regardless of if they ever pursue one or not, I see their suffering reduced. Rather than feeling helpless, they become empowered with choice. And in that remarkable moment, I watch them almost immediately stop focusing on how they are going to die, which is something they have been so fearful of, and begin to concentrate instead on how they plan to live for the time they have remaining.
That the possibility of an assisted death is now available to Canadians, and millions of others around the world, is something the public has embraced. Along with the tremendous courage shown by the patients and their families who fought for this change, we should be grateful for the legalization of assisted dying in the Netherlands and the carefully documented experience of the Dutch, without whom none of this might have been possible, and because of whom many more might have this option one day.