Why I decided to provide assisted dying: it is truly patient centred careBMJ 2019; 364 doi: https://doi.org/10.1136/bmj.l412 (Published 30 January 2019) Cite this as: BMJ 2019;364:l412
The introduction of legal assisted dying and voluntary euthanasia in strictly defined circumstances in Canada in June 2016 represented a fundamental shift in the medical profession’s role, and in doctors’ understanding of what it really means to alleviate patients’ suffering (box). As a palliative care physician in Canada, I faced the reality of this shift: would I be a conscientious objector or a provider of medical assistance in dying (MAID)?
The debate among physicians and the public continues. The Canadian Medical Association (CMA) adopted a neutral stance in 2013, enabling it to support both conscientious objectors and providers. This helped me to decide to become a provider, because I knew the profession would support my choice.
Deep personal reflection
MAID’s complexities pose ethical challenges for the profession and for individual physicians. I began deep personal reflection. What are the goals and values of medicine? Can hastening death be an ethical and legitimate goal? What is the nature of suffering? What is the role of the physician in relieving suffering? What does it mean truly to respect patient autonomy?
I continue to reflect on these questions. I make the choice to provide assisted death to my patients because I believe it is a compassionate response that fully respects patient autonomy.
It was not an easy decision. I had been a family physician for more than 35 years, and a palliative care physician for the past 11 years, before MAID became legal. My education and beliefs had led me to seek to extend life whenever possible and appropriate, and certainly not to hasten a patient’s death.
This was anathema to me. It took me the better part of two years to sort through my deepest emotions, my values, and the tenets of my faith to decide that I would help my patients die. Ultimately, helping eligible patients who wanted choice over the manner and timing of their deaths is consistent with what I have always done: relieve suffering.
The first patient I helped to die
My first experience of providing MAID was in July 2016, less than a month after it had become legal. Gordon Froggatt was a 79 year old professor emeritus of medicine and a cardiologist. He gave me written permission to share his story because he believed in the option of medical assistance in dying and wanted the profession and the public to learn from his experience. He was an ideal partner with whom to venture into this unknown territory—a fellow physician who was determined to take control of his own end.
He had advanced Parkinson’s disease and very early Lewy body dementia. He understood his fate all too well. He had become unable to feed and toilet himself or even to roll over on his own in bed. He had profound uncontrollable torso and head shaking. As a proud family man and respected member of the medical community, he found the loss of independence and inability to care for himself unacceptable. He had sunk into a deep depression.
He received compassionate care and treatment from his geriatric psychiatrist, his devoted neurologist, and his family physician. Finally, I provided his palliative care. He knew MAID had just become legal in Canada, and he asked me if we could talk about it. When I agreed, it was as though a huge burden was lifted from his shoulders.
How the light gets in
The Canadian poet Leonard Cohen wrote, “There is a crack in everything, that’s how the light gets in.” When I told Froggatt that I might not provide MAID but would explore the option with him, he became illuminated. I had provided him with a crack of light, a glimmer of hope that he wouldn’t have to continue to suffer intolerably to the end, through total physical disability and dementia.
I also spoke with his wife and daughter. They too, of course, had witnessed his struggle with Parkinson's disease over the years and understood his suffering on an existential level. With mixed emotions—wanting to support his wish while experiencing anticipated grief—they fully supported his decision. I told them exactly how MAID would occur, that it would be patient and family centred and carried out exactly as they specified: in their own home, in Dr Froggatt’s own bedroom, with them there, and so on.
A palliative care colleague and I each undertook an independent assessment of Froggatt’s eligibility given the legal criteria (box). His death was judged to be “reasonably foreseeable,” not only by us but also by his attending neurologist, an expert in Parkinson’s disease. This means that his medical conditions ultimately will end in death, without specifying an exact life expectancy or prognosis but implying that he was terminally ill. Froggatt demonstrated full capacity to understand the decision he was making and fully appreciate the consequences. I asked his psychiatrist to review him, and he too found him no longer to be depressed and to have full capacity to make a decision to undergo MAID.
A date was set
According to Canadian legislation, once a person signs a formal request to undergo MAID, witnessed by two independent witnesses to ensure no coercion at this stage, a 10 day reflection period ensues. During this time, patients can consider whether they really want to proceed. They are told that they can withdraw consent at any time, up to the last moment, and their medical care will not change. The MAID procedure can occur only on the 11th day or thereafter from when they signed the formal request.
A date was set. I prescribed and ordered drugs. I’d discussed with Froggatt whether he’d prefer self administration (lethal ingestion) or intravenous administration by the physician (lethal injection), both of which are options in Canada—except in Quebec, where only intravenous administration can take place. Froggatt chose intravenous administration because his tremors would have made other options nearly impossible. A nurse visited him the night before the procedure and started two large bore intravenous lines. The drugs must be transferred from the pharmacy directly to the physician performing the procedure. Leftovers and additional backup drugs must be returned directly after the procedure.
The most peaceful death
The usual drugs are midazolam for initial sedation, then propofol and rocuronium at lethal doses. Froggatt gave his fully informed consent the night before, with his capacity to do this confirmed once again. On the morning of the procedure, I asked him directly if I had his consent to proceed, and he responded yes, he wished to do so. He then expressed his gratitude to me for performing this procedure. I then injected the drugs and within a few minutes he quietly passed away.
He died the most peaceful death I had ever witnessed, in the arms of his daughter, in his own home, surrounded by people who loved him.
I realised, then, that this procedure was the most patient centred service I could offer. I alleviated his suffering in a way that wasn’t possible through any other means. This experience exemplified for me the reason I went into medicine: to alleviate suffering. I know that’s what I did for Gordon.
MAID continues to raise many complex questions. Should advance consent to undergo MAID be permitted before the onset of dementia and loss of capacity, for example. Or should a patient have complete capacity at the time of the MAID procedure as is the case now, giving their informed consent the moment just before drug administration? Should mature minors under the age of 18 who have capacity to make healthcare decisions be eligible for MAID? Can intolerable suffering from mental illness be the sole criterion for eligibility?
The Council of Canadian Academies was tasked by the federal government when it introduced medical assistance in dying legislation to consider these matters. Experts from all over Canada met to explore these challenging questions. Although recommendations were not made, evidence was gathered from around the world, analysed, interpreted, and reported to serve as a foundation for future discussion, likely later in 2019.1 It is critical that the CMA is an active participant in these discussions, representing the diverse voices of physicians in this national discussion.
High quality palliative care
Discussions around MAID must be leveraged to ensure that all patients have timely access to high quality, specialist palliative care as an integral part of end of life care. Medical organisations such as the CMA and the Canadian Society for Palliative Care Physicians must continue to advocate for better access, because, unfortunately, as many as two thirds of Canadians lack this.2
Patients must have a choice from the full range of options of end of life care. Being able to explore suffering and the reasons for requests for assistance in dying is a competency that every health provider should have. This will improve the quality of care we provide, whatever the setting. Tackling physical, psychosocial, and spiritual suffering, as is done in palliative care, can reduce the wish to hasten death.3
Tackling suffering, however, will always be insufficient and unacceptable for some patients. Despite our best efforts, palliative care can’t do it all. Some patients receiving the highest quality palliative care will still want an assisted death. For them, it is the only way to relieve their suffering, as Dr Froggatt’s experience showed only too well.
Respect for autonomy
Respect for patient autonomy is the key reason I accepted MAID as a legitimate option for patients, and why I have chosen to be a provider. Patients must to be able to make their own choices, with the best possible quality of life until they make a choice to die.
Physicians also have a right to choose whether to participate in providing MAID. Canadian law recognises physician autonomy, and does not compel any physician to be involved in an act or procedure that would violate their values or faith.
In my experience, fears that vulnerable populations might be over-represented in receiving MAID just aren’t materialising. And, in my experience, it’s availability has only increased trust in doctor-patient and doctor-family relationships, as I have explored suffering and offered a legal and ethical end-of-life option in a compassionate and sensitive way. Countless people have appreciated simply being able to have an honest discussion with a physician.
My choice to provide MAID is right for me. For some physicians, it is not. Physicians should never be expected or compelled to participate in this procedure if they feel it is contrary to their values and beliefs. This matter of conscience, to become a conscientious provider of, or a conscientious objector to, the provision of MAID, should unequivocally be respected. This matter is not black and white, however, and physicians may choose to provide eligibility assessments, prescribe drugs, or even be present at a MAID event to support the patient and family, without actually participating in the administration of lethal drugs.
Supporting conscientious objection and conscientious provision in the context of respecting physician autonomy is the essence of the CMA’s approach to MAID. Thus, the medical profession as a whole could participate actively throughout the drafting of the law and in the governance of medical assistance in dying. Respecting autonomy, for patients as well as for physicians, is the essential element in finding compromise to one of the most challenging question of medical ethics of our times.
Canada’s law for medical assistance in dying
The law in Canada, Bill C-14, An Act to Amend the Criminal Code and to Make Related Amendments to Other Acts (Medical Assistance in Dying), states that a person may be eligible for medical assistance in dying only if they meet the following criteria:4
They are eligible for health services funded by a government in Canada
They are at least 18 years of age and capable of making decisions with respect to their health
They have a grievous and irremediable medical condition
They have made a voluntary request for medical assistance in dying that in particular was not made as a result of external pressure, and
They give informed consent to receive medical assistance in dying.
In criteria (c), “grievous and irremediable” means:
They have a serious and incurable illness
They are in an advanced state of irreversible decline in capability
That illness, disease, or disability, or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and cannot be relieved under conditions that they consider acceptable, and
Their natural death has become reasonably foreseeable, taking into account all of their medical circumstances, without a prognosis necessarily having been made as to the specific length of time that they have remaining.
Two independent physicians or nurse practitioners must perform eligibility assessments to determine if the patient meets all the specified criteria. The legislation also states that to be eligible for assisted death, people must be informed of ways to relieve their suffering, including palliative care.
Definitions under dispute
Proponents and opponents of assisted dying do not all agree on the terminology used to describe the process.
Assisted dying—Proponents of the Assisted Dying Bill 2015 in England and Wales argue that this term best describes prescribing life ending drugs for terminally ill, mentally competent adults to administer themselves after meeting strict legal safeguards. Assisted dying, as defined like this, is legal and regulated in the US states of California, Colorado, Hawaii, Montana, Oregon, Vermont, and Washington, and in Washington, DC. In 2017, similar legislation was passed in Victoria, Australia.
Assisted suicide—This term is often intended to describe 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. The drugs are self administered. Some opponents of assisted dying do not accept that it is different from assisted suicide. Assisted suicide, as defined like this, is permitted in Switzerland.
Voluntary euthanasia—This term describes a doctor directly administering life ending drugs to a patient who has given consent. Voluntary euthanasia is permitted in Belgium, Luxembourg, and the Netherlands. In 2016, Canada legalised both voluntary euthanasia and assisted dying for people whose death is “reasonably foreseeable,” in what it calls “medical assistance in dying” (MAID).
Sandy Buchman practices community, home based palliative care in Canada. He also provides palliative care to homeless people in hospices, shelters, and on the street. He is president-elect of the Canadian Medical Association. After more than two years of personal reflection, when medical assistance in dying (MAID) became legal in Canada in June 2016, he decided to become a provider. He believes that respect for patient choice and autonomy in controlling the timing and circumstances of death is a patient centred, compassionate end-of-life option to tackle human suffering in all its domains. In December 2018 he appeared before committees in the House of Lords and the Scottish parliament discussing the proposed legislation on assisted dying in the UK.
Competing interests: I have read and understood BMJ’s policy on declaration of interests and declare the following: As an elected member of the board and as president-elect, I receive honoraria from the Canadian Medical Association.
Provenance and peer review: Commissioned; not externally peer reviewed.