A proposed law threatens to be a ‘stunning reversal’ of the medical profession’s duty to respect the standard of care.
By Trudo Lemmens, Mary Shariff and Leonie Herx
As [the Canadian] Parliament discusses Bill C-7’s expansion of the Medical Assistance in Dying (MAiD) Act, one issue has been conspicuously absent from public debate, even though it has major implications for medicine and for patients: the impact of the bill on the role of the medical profession in determining the standard of care, as it applies to MAiD.
The government introduced Bill C-7 in response to the decision of Quebec Superior Court Justice Christine Beaudouin (in the Truchon case), who ruled unconstitutional the current law’s limiting of MAiD to those whose natural death is “reasonably foreseeable”.
Bill C-7 addresses Justice Beaudouin’s finding — which in our opinion should have been appealed instead — by introducing a second track of access to MAiD for people with chronic illness or disability whose death is not reasonably foreseeable.
For the second track, Bill C-7 imposes a 90-day assessment period, which can be shortened when deemed appropriate; a second eligibility assessment by a medical practitioner with expertise in the condition that is causing the person’s suffering; and two strengthened “informed consent” provisions, including an obligation for physicians to ensure that their patients have given “serious consideration” to other options.
The ableist assumptions behind C7
The most often-voiced serious criticism, which we endorse, is that the bill’s second-track access system violates the right to life of people with disabilities and chronic illness, and discriminates against them. If implemented as written, Bill C-7 will expose only people who have a chronic illness or disability to a higher risk of premature death as a result of medical system-organized MAiD, even when they are not approaching death.
The current “reasonably foreseeable” death criterion functions as a safeguard to protect the right to life. Under C-7, this is now removed for people with chronic illness and disability, while others will not have access to a medically-hastened death and instead will normally receive suicide-prevention interventions if they express a desire to die.
As two UN rapporteurs and one independent expert on human rights warned in a recent official communication to Canada, Bill C-7 thereby appears to violate several provisions of UN conventions on human rights related to the right to equality and the right to life. While reflecting understandable empathy for often-severe suffering, the bill thereby conforms, in our opinion and that of the UN special rapporteurs, to an ableist presumption that a life with disability or chronic illness has less quality or is less worth living. Only for them, MAiD is transformed from a procedure to facilitate dying into a terminal therapy for life’s suffering.
It is understandable, therefore, that this has been the main focus of the debate. But there is another key issue that so far has received scant attention: how the bill undermines the crucial role of the standard of care, and what this will mean for medicine and for patients.
Displacing the Standard of Care rule
If implemented as written, Bill C-7 will allow physicians to end the life of people with disabilities or chronic illnesses at their request and will require the system to ensure it happens even when physicians are convinced, based on their expert knowledge, that medicine offers options and even when the patient may have years or decades to live with a good quality of life if other options are explored and tried first.
In short, Bill C-7 displaces the long-standing professional rule of the “standard of care” — which obligates physicians to apply their skills and intricate knowledge to a patient’s particular clinical circumstances — and replaces it with patient choice.
The profession’s silence about Bill C-7’s impact on the standard of care is surprising. It is, in fact, an issue that already raises concerns in the context of Canada’s current MAiD law, since some people are already receiving MAiD as a result of a flexible interpretation of the “reasonably foreseeable” death criterion, while they may have had years to live if adequate treatment had been provided. We would have expected that also health professional organisations or scholars who endorse in principle the bill’s expansion, would have raised questions about this component of Bill C-7, since the concern will be so much more magnified.
Granted, there are other qualifying conditions in Bill C-7 than informed consent for access to MAiD. Patients must be capable of decision-making; must have a grievous and irremediable medical condition, which is defined as a serious illness or disability, which causes “enduring and intolerable suffering” resulting in an “advanced state of irreversible decline in capability.”
But there is no definition of what counts as “serious” illness, or of what is an “advanced state of irreversible decline”. Many, if not most, disabilities would fall under it. Severe hearing loss, significant loss of vision or of mobility, for example, are disabilities that can be associated with an irreversible decline of specific capabilities and would qualify. Such conditions, and even chronic tinnitus, have been the basis for MAiD in the few jurisdictions that allow MAiD outside the end-of-life context. The criteria of “suffering” is already interpreted entirely subjectively — completely determined by the patient in current MAiD practice.
Standard of Care and consent
That physicians need to obtain “informed” consent from the patient before engaging in MAiD is obviously key. But they must also generally act according to the “standard of care” which is based on evidence-informed standards, shared among professionals and in line with their acquired clinical expertise.
The fact that a patient ultimately consents to a treatment proposed by a physician does not dislodge this a priori standard. It is part of medical practice that physicians can present only those medical treatment options that are reasonably and objectively indicated based on the “standard of care”.
While shared-decision making and patient-centred care are rightly emphasised as vital to decision-making, these important concepts do not mean that patients can insist on procedures that violate the standard of care, including how the standard of care stages different procedures as first, second or subsequent lines of treatment.
The application of the standard of care to a particular patient’s situation is determined by a complex process involving medical research, evidence-informed experience, and standards and rules set by regulatory agencies and professional organisations. Less-invasive options are usually required to be tried first, with higher-risk procedures as last resort.
The integrity of the “standard of care” is what keeps physicians accountable and holds them to the highest level of medical practice. It is key to keeping patients safe in the hands of their physicians. It is from within the standard of care exercised by physicians that patients exercise their consent to treatment proposed. Not the other way around.
For example, hip or knee replacements for arthritis require that non-surgical interventions be tried first, such as lifestyle modifications (diet, exercise) and pain medications. Surgery is the last resort, and clearly not only because of cost considerations. Similarly, a neurologist who would offer deep brain stimulation to a person with epileptic seizures without trying less invasive treatments first would violate the standard of care — even if the patient insists and “consents” to it.
In our view, since physicians cannot offer treatments that run counter to the standard of care, then surely they cannot, pursuant to the standard of care, offer and provide to the patient the ending of their life — an ultimate and irreversible harm — if they are convinced that other medical procedures or support measures will provide relief. The importance of this is, for example, particularly clear in the mental health context, if mental health is accepted as a basis for requesting MAiD. Imagine what it will mean for the standard of care in mental-health care practice and suicide prevention if a severely depressed person, who is assessed as capable of decision-making, refuses all available treatment and support measures and insists on obtaining MAiD instead.
Misapplication of the doctrine of ‘informed consent’
To understand how we got to the point where “informed consent” is replacing the standard of care in the MAiD context, we must look at the Supreme Court’s 2015 Carter decision. The court ruled that patients suffering unbearably from a medical condition should be able to have some form of access to MAiD and invited Parliament to create an exemption to the remaining criminal law prohibition to allow this. It also reiterated, in passing, a patient’s right to refuse treatment, even in the context of a request for MAiD.
But it is important to keep in mind that the court’s decision was in the context of the case of Gloria Taylor, a person with ALS, who was approaching her natural death. In Carter, the court emphasised (and it bears repeating): “The scope of this declaration is intended to respond to the factual circumstances in this case. We make no pronouncement on other situations where physician-assisted dying may be sought.”
The court thus reaffirmed the “right to refuse treatment” within the factual context of an approaching death. Recognition and protection of the right to refuse an intervention in a general context is entirely different from the connections and analogies that can be made in the end-of-life context between treatment refusals and obtaining active assistance in dying. Even if the death of a patient with diabetes, for example, can become “reasonably foreseeable” in the event the patient refuses treatment, the “ethical distinction” is exceptionally clear when viewed from the standard of care perspective, since the physician is obligated to comprehensively explore with the patient the treatment options that will indeed save their life. In the non-end-of-life context, combining treatment refusal with a request to active ending of life raises the stakes.
Yet, the Supreme Court’s reiteration of the right to refuse treatment appears to be translated in the context of Bill C-7 as a confirmation that MAiD should always be the standard of care when MAiD is what a patient wants.
We believe this is a misapplication of the doctrine of “informed consent.” To accept this constitutes a wholesale abandonment of the idea that the medical profession has a responsibility to make considered medical determinations based on evidence, unique knowledge and expertise.
This is a stunning reversal of the central role of the medical and legal concept of the standard of care. It lifts “informed consent” up to the status of the sole arbiter of what constitutes proper medical practice. This development is also internationally unprecedented. Even the three most permissive MAiD regimes in the world — Belgium, the Netherlands, Luxembourg, the only ones that currently permit physician-provided ending of life outside the end-of-life context — treat MAiD rightly as the last resort, available when no other options are seen to remain.
It is thus astonishing that the Canadian Medical Association and some other medical organisations expressed support for C-7. If regulatory colleges follow the CMA’s lead, the medical profession is undermining the very reason why our society has provided it with self-regulatory powers. Physician self-regulation is based on the premise that physicians possess special knowledge and expertise, and that determining what constitutes proper health care is therefore best left to them, even if external scrutiny and oversight are appropriate.
By supporting Bill C-7, medical organisations are handing over to patients the determination of professional standards. They are thereby also abandoning their commitment to patients to provide the best evidence-informed care, based on the concept of “informed consent” that we also know is rarely if ever fully realised in practice.
We cannot believe that this is what our Supreme Court intended. While we believe that the very foundation of Bill C-7 is already discriminatory, the failure to properly respect and uphold the interaction between informed consent and the standard of care makes the potential impact of an expansion outside the end-of-life context so much more problematic.
The least we would expect is that the new bill explicitly confirms that MAiD is an irreversible last-resort option when all other reasonable options available according to the standard of care have failed.
There is no other country in the world that has elevated MAiD as a first-line medical treatment on demand, as an unmodified Bill C-7 would do.