Definitions
In any debate, our choice of words colours our arguments. Surely, everyone is supportive of “dying with dignity”, and against doctors “killing” patients, just like nobody claims to be “anti-choice” or “anti-life”. The following definitions should serve to clarify the arguments:
Medical Aid in Dying (MAID): when a medical doctor or nurse practitioner (NP) intentionally participates in the death of a patient, by directly administering a lethal medication, or by providing the means by which a patient can end their own life. This has been legalized in Carter. Because the law in Canada includes NP, MAID is a preferable term to Physician-Assisted Death (PAD).
Euthanasia: This is when someone (often, but not always, a doctor), intentionally ends another person’s life in order to relieve suffering, with or without consent. Carter leaves many forms of euthanasia illegal, such as euthanasia of dying infants and children. Of note, some jurisdictions (e.g. Belgium) have legalized forms of infant and child euthanasia.
“Dying with Dignity”: refers to a death that occurs within the parameters set forth by a dying individual. It is NOT synonymous with euthanasia or MAID.
Palliative Care: is an approach to medical care for people with serious or terminal illnesses. It focuses on quality of life and relief from symptoms such as pain, shortness of breath, and mental stress.
Mature Minor: refers to the legal doctrine in Canada that has existed since AC v Manitoba (Director of Child and Family Services), [2009] 2 SCR 181. This decision annulled laws restricting capacity determinations to those aged 16 and older, and said that if a child demonstrates the “ability to exercise mature and independent judgment”, their views “ought to be respected”.
“Grievous and Irremediable”: a medical illness, disease, or disability that causes enduring suffering and is intolerable to an individual.
There are few legal decisions that attract major attention within the medical community: Carter v Canada (Attorney General), 2015 SCC 5 was one of them. Around water coolers, break rooms, and across scrub curtains in operating theatres, Canadian doctors debated how the ruling would affect our patients and our profession.
Personally, I continue to struggle with my own opinions on Medical Assistance In Dying (MAID – please see the “definitions” box above), as likely a vast swathe of the physician community does. I will leave it to brighter legal minds (including those within the pages of this magazine) to debate the central question of whether or not the Supreme Court of Canada was morally and constitutionally correct in Carter. However, in a practical sense, doctors have a uniquely intimate familiarity with the dying process, with consent and capacity determination, and with safeguards of vulnerable populations. These experiences can inform valuable insights into many of the most difficult legal aspects of MAID.
I will use these experiences to argue that any law on MAID based on maximizing personal autonomy needs to extend the right to die to all competent individuals. Currently, several patient groups are excluded without a principled basis from our newly-created regulation on MAID, in contradiction of the Court’s holding in Carter. These restrictions serve only to further infantilize patients who already carry great stigma. Finally, I will argue that our laws need to include strong protection for physicians participating in MAID, and for those who wish to conscientiously object.
Who should be able to obtain MAID?
Every doctor carries within them countless memories of patients who have experienced debilitating illness, immense suffering, or death.
I remember from medical school, for example, a middle-aged woman with ALS (Lou Gehrig’s Disease, a degenerative neurologic disease). She was accepting of the fact that she would need a feeding tube, and help with cleaning herself, and that she would progressively lose the ability to breathe - on the one condition that she always be able to write the crossword in the morning. She remained generally cheerful until she lost the use of her hands, at which point she became deeply miserable.
Far be it for me to assign value to this woman’s life, or to particular aspects of it. I’m not a crossword fan, but for her it symbolized the maintenance of her independence, her dexterity, and her intellect. Similarly, each one of us has deeply unique desires, goals, and values, that allow us to define what constitutes a meaningful quality of life or, conversely, unacceptable suffering.
Respect for our patients’ autonomy to make this definition for themselves is deeply engrained within our physicians’ code of ethics, and with our evolving Canadian social landscape. Indeed, the Court in Carter explicitly avoids defining what counts as a “grievous and irremediable” medical condition, and instead defines it as any illness, disease, or disability that “causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition”. Intolerable suffering occurs broadly, across the entire spectrum of medicine; it therefore behooves us to apply MAID equally broadly if we wish to remain consistent with the overarching principle of individual autonomy.
Terminal Illness
Bill C-14, the federal legislation on MAID, restricts MAID to patients with terminal illnesses in an advanced state of irreversible decline. This restriction will be problematic for doctors to enact, and is inconsistent with the principle of patient autonomy underpinning Carter.
Bill C-14’s legislation generally leaves doctors free to determine patient eligibility for MAID, provided that “natural death is reasonably foreseeable”. I worry that doctors will struggle with defining what “reasonably foreseeable” means. For example, if I have a leukemia patient with a 50% chance of dying six months from now, is that “reasonably foreseeable”? What if it’s an 80% or 90% chance of death? What about a patient with a disease like heart failure, where they may potentially live a long time but there is a reasonable chance within any given month of having an acute deterioration that may lead to death? Asking physicians to determine when natural death counts as “reasonably foreseeable” will lead inevitably to inconsistent application or subjective cut-offs. Judges or lawyers may be more familiar with commonly-used legal terms like “reasonable” and “foreseeable”, but it is equally problematic if the regulatory system is confusing enough that doctors need to seek legal advice on a regular basis.
Even more importantly, patients without terminal illnesses can suffer immensely, and it robs them of their autonomy to restrict them from MAID. What purpose does it serve to force a patient with heart failure, for example, to experience months or years of extreme shortness of breath (described by one of my patients as “drowning all the time”), until they eventually become close to death and thus eligible for MAID? MAID is legal on the basis that competent individuals should have the autonomy to determine when their quality of life is outweighed by intolerable suffering – a determination that can occur regardless of how close one is to death.
Requirements for patients to be near the end of life are also inconsistent with Carter itself. Kay Carter suffered from spinal stenosis, a disease which can cause debilitating pain, but which is not lethal and does not lead to a reasonably foreseeable death. I am no lawyer, but I think it would be unfitting for the regulation brought about by Carter to be created in such a way that the plaintiff herself would not qualify.
Mental Illness
Bill C-14 restricts MAID to individuals with physical illnesses - this discriminates against people with mental illness. Diseases like depression or psychosis can cause profound suffering, preventing people from being able to work or enjoy any quality of life. Doctors presume that patients with these diseases have actually departed from their normal selves, and may return with appropriate treatment.
But what happens when they are completely unresponsive to treatment? I have seen patients involuntarily admitted to hospital for their twelfth episode of depression, refractory to drugs, counseling, and electro-convulsive therapy. For patients like this, at some point the suicidality of an acute (and presumably reversible) mental illness becomes a reasonable desire to die rather than continue to suffer intolerable symptoms of that same mental illness (such as worthlessness, guilt, and self-loathing). Teasing out this fine line will undoubtedly remain a challenge for doctors, however we already have extensive frameworks for diagnosis and capacity assessment in psychiatric patients. These ought to be reasonably applied to patients seeking MAID.
Dementia
Physicians routinely allow competent patients to make their wishes known in advance for times when they may be incompetent to make medical decisions. This “advance consent” is such a common part of medical care that it is used in routine situations (e.g. consent to remove the appendix of a patient when they are anesthetized) and in issues of of life and death (e.g. “Do Not Resuscitate” or DNR orders).
It is therefore inconsistent to exclude advance consent for MAID. The legislators who created Bill C-14 worried that these patients would not be able to change their minds, but this concern is common to all advance consent. I don’t have to wake a patient up periodically to ask them if I should proceed with surgery, and I can remove an unconscious patient’s breathing tube based on a DNR order created months before.
We already thoroughly scrutinize patients’ understanding when it comes to advance wishes for issues of life and death. With DNR orders, for example, a family doctor might confirm multiple times, over a period of years, that their patient knows what it means to have a breathing tube removed. The same doctor might demand that wishes for DNR’s be made without family present, or in writing. If there is any doubt that the patient fully understands the finality of a DNR order, the doctor can (and often does) refuse to enact it. These same safeguards can be reasonably applied to advanced consent for MAID.
If we don’t allow advanced consent, we also force patients with dementia into a terrible choice: to end their lives early when they are of sound mind, or to wait too long and then later be found incompetent to consent to death.
Mature Minors
If MAID is legal, it should be available to all capable individuals with grievous and irremediable medical conditions, including mature minors. Nobody doubts that children and teenagers can experience immense suffering - as a resident doctor in pediatrics myself, I see this far too often. The question is whether or not minors under 18 are capable of understanding the consequences of their decisions, and have mature personal values that can inform those decisions. Minors also need special protection from external influences, such as their parents or peers.
Pediatricians navigate these issues on a daily basis. Assessing a child’s development and growing level of intelligence might involve using standardized tests or questionnaires, confidential interviewing with parents absent, or consultation with a psychiatrist or specialist in adolescent medicine. It should involve probing deeply into a youth’s understanding of death and disease, and the consequences of decisions. This understanding evolves as children mature, and along with it we can reasonably give children a growing role in decision-making.
For example, I won’t let a five year-old who needs antibiotics refuse an IV, but I will let him choose which arm I’ll insert it into. I won’t let a twelve year-old decline a life-saving leg amputation, but I might let her delay it a couple of weeks until after her middle school graduation. At the far end of the spectrum, I might let a 16 year-old with leukemia refuse life-sustaining chemotherapy. This child may have already undergone years of treatment, affording him a mature understanding of pain, suffering, quality of life, and death. He might very well be more mature than the average 21 year-old, and should be capable of fully consenting to treatment. He might be allowed to attend clinic appointments on his own and he might take an active role in treatment decisions.
MAID can be reasonably extended to mature minors using this same robust system of capacity assessment in children. Indeed, our courts have struck down laws1 that impose arbitrary age cut-offs for consent, and instead have granted children the right “to a degree of decision-making autonomy that is reflective of their evolving intelligence and understanding”. To do otherwise flies in the face of the personal autonomy central to Carter, and only serves to trap mature minors in intolerable suffering until they reach their 18th birthday.
Who will provide MAID?
With MAID legal, there need to be strong protections and supports for the physician community who will be providing this service. Carter has made death a right, and therefore we as physicians collectively have a corresponding obligation. I worry that without proper safeguards and supports, there may be an erosion of the doctor-patient relationship, and there may be problems for doctors who wish to conscientiously object.
First, we will need to protect the special relationship between people and their doctors. Patients reveal their secrets, fears, and core beliefs to doctors in ways that are uniquely honest, on the basis that doctors always have their patients’ best interests in mind. This close relationship has immense value, and allows doctors to help people navigate complex health decisions. It’s easy to think of doctors as merely providing a menu of treatment options from which competent patients choose, but the reality is very different. People often rely on their doctors for advice, asking “what would you do?” If MAID is part of that conversation, I worry that patients might fear the opinions of their doctors, or that unscrupulous doctors might coerce their patients into choosing MAID. Experience from Belgium and the Netherlands shows that fear of these “rogue doctors” is indeed a risk. Strong safeguards – e.g. requiring a neutral second doctor to approve every case of MAID – will be necessary to prevent this from happening.
Furthermore, we will need to support doctors through the emotional burden of participating in MAID. Doctors aren’t abstract legal concepts, but individuals with lives and emotions. Our profession will have to learn how to humanely end patients lives (needless to say, current medical school curricula are silent on how best to cause death in humans), and individual doctors will have to actually perform the act. I suspect that there exist a great number of doctors (myself included), who support the idea of PAD, but would be emotionally unable to participate. In the Netherlands, 8 out of 10 doctors participating in MAID experience anxiety or more serious mental illness. Canadian doctors will have increased need for mental health services, and these support programs should be made widely available through physician health programs.
Finally, physicians must be allowed to refuse to participate in MAID. Nobody is proposing that unwilling physicians be forced to end their patients lives, but there is disagreement on the thorny issue of “effective referral”. If a patient asks their doctor to refer them to another physician willing to end their life, is their doctor obliged to do so? For physicians comfortable with the idea of MAID, but not able or willing to do it themselves, this shouldn’t be a problem. However, for physicians who object to MAID on moral or ethical grounds, a referral is functionally equivalent to performing the act itself. In the words of one Conservative Member of Parliament, “this is akin to being a country that doesn’t perform capital punishment or torture, but extradites people to countries where they will face capital punishment or torture”.
These conscientious objectors need a system that supports them, while still allowing Canadians the right to die under the conditions set out by Carter. Ideally, health regions, clinics, and hospitals would compile information of willing providers, and these would be publicly advertised so that patients would not require their own physicians to make a referral.
This system should not lead to decreased access. As evidence, until quite recently doctors in Canada were not obliged to refer patients for abortions if they conscientiously objected, and there is little evidence that this led to limited access. By far, the most important factor affecting access to abortion has been the availability of willing providers, not the presence of unwilling objectors. MAID access can be similarly safeguarded by ensuring there are sufficient participating doctors within every region of Canada.
Conclusion
We have now crossed the Rubicon, and MAID is legal in Canada. It now falls on the legal and medical communities to create laws that maximize patient autonomy while protecting physicians and vulnerable patient groups. If we wish to live up to this ideal of personal autonomy, and to Carter, then access to MAID must include individuals with non-terminal diseases, mental illnesses, dementia, and mature minors. The federal government’s legal framework (Bill C-14) fails to include these groups, and will likely face legal challenge and amendment by future governments. Further, it provides insufficient support for physicians participating in MAID, and insufficient safeguards for conscientious objectors.
Ultimately, the legality of MAID comes down to a choice between different visions for Canadian society. We can choose to have a society that maximizes personal autonomy, and allows individuals to live and end their lives in the manner that they desire. Alternatively, we can choose to have a society that protects the intrinsic value of all lives, including the most vulnerable, and protects the traditional role of doctors. We cannot have both. As Carter continues our inexorable march towards the first vision, we will need to work hard to ensure that all Canadians share in the benefits of this increasing autonomy, and nobody is left behind.
1 AC v Manitoba (Director of Child and Family Services), [2009] 2 SCR 181.
Dr. Tom McLaughlin is a resident doctor in pediatrics at the University of Toronto. He is one of the chief pediatrics residents at the Hospital for Sick Children in Toronto, and is the Past President of Resident Doctors of Canada (the national organization representing over 9,000 resident doctors in Canada). Follow him on Twitter at @mclaughlin_tom.