 Hello my name is Jocelyn Downey. I'm a professor in the faculties of law and medicine at Dalhousie University and a member of the Dalhousie Health Law Institute. In this module I'll provide you with an introductory overview of end of life law and policy in Canada. My goal is to help you to understand what the law is with respect to the various kinds of assisted death, to know what it is, when it is clear, when it is unclear, and to know where to look for further information if, or I should really say when, you encounter end-of-life law and policy issues in your practice. I'll cover the entire spectrum of assisted dying. This includes the withholding and withdrawal of potentially life-sustaining treatment, potentially life-shortening palliative interventions, and what is now known in Canada as medical assistance in dying. Please be sure that you have listened to the definitions module before listening to this overview module. The withholding and withdrawal of potentially life-sustaining treatment are clearly legal in Canada. The Supreme Court of Canada has stated that Canadian courts have recognized a common law right of patients to refuse consent to medical treatment or to demand that treatment once commenced be withdrawn or discontinued. This right has been specifically recognized to exist even if the withdrawal from or refusal of treatment may result in death. Indeed, physicians have a duty to respect refusals of treatment. As the Supreme Court of Canada has stated, quote, under our common law the physician has no choice but to accept the patient's instructions to discontinue treatment. To continue to treat the patient when the patient has withdrawn consent to that treatment constitutes battery. These general statements require some nuance to explain the law with respect to specific categories of patients. It is clear and controversial that if the patient is a competent adult and is making a free and informed refusal, health care providers must respect this refusal. It is clear and uncontroversial that if the patient is incompetent but has a valid advanced directive, again it is the patient's wishes that will prevail. If the patient previously expressed a treatment refusal within a valid instruction directive, health care providers must respect this refusal. If the patient has appointed a proxy through a valid proxy directive, health care providers must respect a free and informed refusal by the proxy unless the health care provider believes the proxy is not acting in accordance with their powers under the proxy directive. Provincial and territorial legislation dictates the specific requirements for valid advanced directives. Finally, the law is clear and uncontroversial with respect to immature minors that is individuals under the age of 18 or 19 who are not capable of understanding the nature and consequences of the treatment decision or lack sufficient independence. For these patients, the health care provider must respect the minor substitute decision makers refusal to consent to treatment unless the health care provider believes that the substitute decision maker is not acting in the patient's best interests. In such a case, the health care provider should seek direction from the courts. Now if the patient is a mature minor, things can get a bit more complicated. One quick note here about two different sources of law. The common law is law made by judges based through cases that come before them. Statutes or laws passed by parliaments both are relevant here. A mature minor is an individual under the age of majority, 18 or 19, depending on what province or territory you are in, who understands and appreciates the consequences of the decision to be made and has sufficient independence. Under the common law mature minor rule, their decision must be respected. If you are in a province or territory that doesn't have legislation superseding the common law, then you are governed by the mature minor rule. But in some provinces, the common law rule has been superseded by statute specifically in British Columbia, Alberta, Saskatchewan, Manitoba and Newfoundland and Labrador through their child protection statutes. These statutes establish specific ages for consent and say that you have to act in the best interests of minors under a certain age, even if they are mature minors. This apparent conflict between the common law and these statutes was addressed by the Supreme Court of Canada in a case called ACV Manitoba. The court said that the concept of best interests in these statutes should be understood to include respect for the minor's decision making if the minor is sufficiently mature and independent. The more mature and independent, the more likely it is that following the minor's wishes is what it is in their best interests to do. There's also some uncertainty and controversy in the domain of advanced directives, specifically whether an individual can refuse food and liquids as opposed to artificial hydration and nutrition. This issue arose poignantly in the case of Margot Bentley, a woman with advanced Alzheimer's who had left an advanced directive refusing all liquids and nourishment, not just artificial hydration and nutrition. The institution within which she was living refused to respect her directive and over her family's objections insisted upon feeding her. In some provinces, the issue has been resolved. For example, in Nova Scotia individuals can refuse both health care and personal care through an advanced directive and personal care can include food and liquids. Other provinces however do not provide the same clarity through their legislation. One very unsettled and very controversial issue within the domain of the withholding and withdrawal of potentially life sustaining treatments concerns whether health care providers have the authority to withhold or withdraw treatment without the knowledge or against the wishes of a patient or the patient's substitute decision maker. This issue is hotly contested with cases going all manner of ways. Some say that physicians do not have this authority, some say that they do, some say that the law is unsettled on whether or not they have this authority and still others have remained silent on the issue. On October 18th, 2013, some clarity was brought to the issue when the Supreme Court of Canada released its decision in Cuthbertson v. Razuli. Here a majority of the Supreme Court of Canada found that Ontario's health care consent legislation requires consent from a patient substitute decision maker prior to the withdrawal of potentially life sustaining treatment. If the health care provider disagrees with the patient substitute decision maker and persists in the desire to withdraw treatment, they must go before the consent and capacity board to seek an order to withdraw treatment. While there was initially some confusion as to whether the Ontario legislation only required turning to the CCB in cases of withdrawal, that is not for withholding, it has since become clear that the consent and capacity board engagement is required for conflicts about both withholding and withdrawal. Unfortunately, the Supreme Court's decision in Razuli provides little guidance for promises in territories other than Ontario as it was based on an interpretation of the Ontario legislation which others do not share. More litigation or preferably action by provincial and territorial legislatures is needed to resolve the ongoing confusion and controversy. Potentially life-shortening opioid use is legal in some circumstances for some patients in some conditions. In the Supreme Court of Canada case of Rodriguez some 20 years ago, reference was made to the practice of giving potentially life-shortening treatment to alleviate a person's pain and suffering. While the real issue in that case concerned assisted suicide, Justice Sipinka for the majority of the court indicated that potentially life-shortening palliative interventions are not illegal. Now while I would argue that Justice Sipinka's reasoning here was flawed, practitioners took comfort in its conclusion that potentially life-shortening opioid use is legal. More recently Justice Lynn Smith addressed this issue in the Carter case in BC, a case in which the prohibition on assisted suicide and the criminal code was challenged. She said, quote, since Rodriguez it has been clear that potentially life-shortening symptom relief is permissible where the physician's intention is to ease pain. This is a clear and simple statement of law, however it leaves much uncertain at the margins. How much is too much? Who can receive this care? Only the terminally ill? Only those facing physical pain? Also those facing psychological suffering? And when can this care be given? Only when the patient is imminently dying? Turning now to terminal sedation. The legal status of terminal sedation is somewhat unsettled in Canada. Withholding and withdrawal is clearly legal. Deep and continuous sedation is clearly legal but is withholding or withdrawal paired with deep and continuous sedation legal. There's no legislation that directly addresses this issue nor have there been any court cases that have directly tested it. There are some guidelines that have been adopted by regional health authorities, for example the Fraser Health Refractory Symptoms and Palliative Sedation Therapy guideline, and professional groups, for example the framework for continuous Palliative Sedation Therapy in Canada endorsed by the Canadian Society for Palliative Care Physicians. You can find these online. Albeit in exceptional circumstances, the Fraser Health Guideline permits terminal sedation in patients for whom death is not imminent and whose suffering is existential. It also permits terminal sedation without the explicit request of the patient. Consent can be given by the patient substitute decision maker. Similarly, again in exceptional circumstances, the framework permits terminal sedation in patients who have more than two weeks to live and in cases of severe existential distress. The framework also provides the consent can be given by a patient substitute decision maker. As noted by Justice Smith in the Carter case, quote, so far as I am aware Palliative or terminal sedation has not been the subject of judicial consideration in Canada. It seems, however, to be a practice that may fall within the principles already described with regard to informed consent and potentially life-shortening symptom relief. And so we can conclude that terminal sedation is probably legal where the patient is imminently dying and is suffering physical pain. Terminal sedation may or may not be legal where the patient is suffering intractable physical pain but is not imminently dying and the total sedation is the cause of needing artificial hydration and nutrition and the withholding withdrawal of artificial hydration and nutrition will be the cause of death. Terminal sedation may or may not be legal where the patient's suffering is existential rather than physical. Unfortunately, the Supreme Court of Canada did not address this issue when it ruled on the appeal in Carter so we are left with considerable uncertainty at the margins. A note about Quebec is warranted here. On June 5th, 2014, the Quebec government passed an act respecting end-of-life care. This legislation addresses a range of end-of-life issues including what is referred to in the bill as continuous palliative sedation. It establishes a right to continuous palliative sedation, criteria for its use, including the fact that it must be with free and informed consent and only when the patient is quote at the end of life and an oversight system for monitoring its use. It must be noted here however that the Quebec legislation does not address terminal sedation that is where the patient is not at the end of life. Now until very recently, assisted suicide was very clearly illegal in Canada. It was an offense under the Canadian criminal code. Euthanasia was also clearly illegal in Canada. It was murder under the criminal code. However, both assisted suicide and voluntary euthanasia are now clearly legal throughout Canada under the umbrella term of medical assistance in dying. Three recent developments must be canvassed here. First, the case of Carter v. Canada. Kay Carter was a woman with spinal stenosis who made the decision that her suffering had become too much and she asked her family to take her to Switzerland for an assisted suicide. They did and they also became the first named plaintiffs in the case that would change the law in Canada. Then Gloria Taylor, a woman with ALS who wanted an assisted death, joined the case and the British Columbia Civil Liberties Association representing suffering Canadians more generally effectively carried the case. The argument was that the criminal code prohibitions on assisted suicide and voluntary euthanasia violate the Charter of Rights and Freedoms. The plaintiffs were successful at trial, lost on the appeal but only on a technical point about whether the trial judge could overturn the 1993 Supreme Court of Canada decision in Rodriguez and then they were successful again at the Supreme Court of Canada. The court ruled nine nothing that the criminal code prohibitions violate the Charter and avoid. Insofar as they prohibit physician assisted death for a competent adult person who clearly consents to the termination of life and has a grievous and irremediable medical condition including an illness, disease or disability that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition. Irremediable they added does not require the patient to undertake treatments that are not acceptable to the individual. This decision took effect June 6, 2016. The criminal code no longer prohibited assisted dying where the Charter criteria were met. The second development hails from Quebec. On June 12, 2013, following a truly extraordinary process of expert and public consultation, the Quebec government introduced an act respecting end-of-life care discussed earlier in the section on palliative interventions. This act would allow medical aid and die. It is important to note that it does so in the context of addressing a range of issues on the spectrum of end-of-life care. The act establishes a right to end-of-life care, care that includes both palliative care and medical aid in dying. Under the legislation, medical aid in dying is defined as a treatment consisting of the administration of drugs or substances by a physician to a person at the end of life at that person's request in order to relieve his suffering resulting in his death. The act permits medical aid in dying for patients who meet all of the following criteria. Is an insured person within the meaning of the Health Insurance Act is of full age incapable of giving consent to care is at the end of life suffers from an incurable serious illness suffers from an advanced state of irreversible decline in capability and suffers from constant and unbearable physical or psychological pain which cannot be relieved in a manner the person deems tolerable. Considerable safeguards were built into the legislation. These include the patients must meet the criteria for access outlined above. The patient must request medical aid in dying themselves in a free and informed manner. Only physicians may provide medical aid in dying. Physicians must ensure provision of information, confirmation of conditions being met, independent opinion and recording of all information. Physicians must report medical aid in dying. Institutions must report on continuous palliative sedation and medical aid in dying. There are inspection powers and there's a commission on end of life care to provide an oversight system. This legislation has been enforced in Quebec since December 2015. The final development is of course the passage of new federal legislation on medical assistance in dying. The legislation was passed and immediately came into force on June 17, 2016. The key elements of the federal legislation are as follows. Medical assistance in dying is the umbrella term that includes both voluntary euthanasia and assisted suicide. It means the administering by a medical practitioner or nurse practitioner of a substance to a person at their request that causes their death or the prescribing or providing by a medical practitioner or nurse practitioner of a substance to a person at their request so that they may self-administer the substance and in doing so cause their own death. Recognizing the scarcity of physicians in Canada, especially in rural and remote communities, as well as the competencies and accountability of nurse practitioners, both physicians and nurse practitioners are allowed to provide medical assistance in dying. Recognizing that healthcare is provided in teams and few physicians or nurse practitioners would be acting completely alone and also recognizing that some patients would want their loved ones to be the ones to help them at the end. Any person is permitted to assist the providers. So pharmacists, nurses and friends and family members are all permitted to assist. Recognizing that patients may well ask a whole range of healthcare providers about assisted dying and that these providers could be very appropriate sources of information, information can be provided by social workers, psychologists, psychiatrists, therapists, medical practitioners, nurse practitioners and other healthcare professionals. According to the new legislation, only those who meet the following criteria can have access to medical assistance in dying. Must be eligible for health services funded by the government in Canada or would be but for a minimum period of residence or a waiting period. Must be at least 18 years old. Be capable of making decisions with respect to their health. Have made a voluntary request. Have given informed consent to receive medical assistance in dying after having been informed of the means available to relieve suffering including palliative care. And you must have a grievous and irremediable medical condition. This is further explained as requiring that they have a serious and incurable illness, disease or disability. They are in an advanced state of irreversible decline and capability. That illness, disease or disability or that state of decline causes them enduring physical or psychological suffering that is intolerable to them and that cannot be relieved under conditions that they consider acceptable. And that 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. Turning now from eligibility criteria to key procedural safeguards. A medical nurse practitioner must be of the opinion that the person meets all of the eligibility criteria. A request must be made in writing signed and dated after the patient has been informed of their grievous and irremediable condition. There must be two independent witnesses to the request. A second independent medical practitioner or nurse practitioner must confirm that the eligibility criteria have been met. There must be a 10 day waiting period between the day the request was signed and the day medical assistance and dying is provided unless death or loss of capacity is imminent. And the patient must be given the opportunity to withdraw consent and indeed must explicitly reconfirm the consent required immediately before medical assistance and dying is provided. Now conscience was of course the subject of enormous debate in relation to the legislation as some healthcare providers want to be able to entirely opt out of medical assistance and dying including not providing any information or referrals to willing providers. Patients and patient advocates in turn worry about lack of access if opting out is allowed. The legislation itself does not resolve this conflict as it says only the following nothing in the legislation affects the charter guarantee of freedom of conscience and religion and nothing compels an individual to provide or assist in providing medical assistance and dying. Now the legislation also establishes the foundation for retrospective oversight. Providers have a duty to file information on every written request for made not yet enforced though. There are penalties for non-compliance with the legislation and there will be a parliamentary review of the provisions of the act and the state of palliative care in Canada to start June 18th 2021. The legislation also imposes some obligations on the minister of health as she must make regulations on the provision collection analysis and reporting of data and after consultation with the provinces and territories establish guidelines on information to be included on death certificates. The legislation also provides that the ministers of justice and health must by December 17th initiate one or more independent reviews of issues relating to mature minors, advanced requests, and requests where mental illness is the sole underlying condition. And no more than two years after the initiation of these reviews they must present reports including findings or recommendations to both houses of parliament. Finally while not in the legislation itself the federal government has also promised to increase support for palliative and end-of-life care and to work with the provinces and territories to establish a pan-canadian system for access to facilitate transfers of care and to protect the conscience of objecting providers and to protect the privacy of willing providers. So that's where we are from a legal perspective. Now what you may reasonably be wondering comes next. Well next we have to face the challenges of implementing the legislation and dealing with several outstanding legal issues. We still need to sort out data gathering for example what goes on medical certificates of death and what information needs to be reported and to who. Medical assistance and dying protocols for example what drugs dosages who's going to pay for the drugs for the services of the health care providers how will the promised system for transfers of care in the face of conscientious objections be managed and education of health care professionals lawyers and the public. There's clearly lots to be done. There are also two key outstanding legal issues to be resolved specifically conscientious objection and the eligibility criteria. First we're going to have to get clear on whether health care providers have a legal obligation to inform patients about medical assistance and dying transfer care to a provider willing to conduct an assessment and provide assistance to a patient if eligible and or arrange an effective referral. We're going to have to figure out whether publicly funded health care institutions have a legal duty to transfer patients allow the provision of medical assistance and dying within their walls or provide medical assistance and dying. The battlegrounds for these issues will be health professional regulatory bodies revising their guidelines. Provincial territorial governments deciding whether to introduce legislation to create statutory obligations for providers and whether to insist upon provision by institutions through their MOUs ensuring access to medical assistance and dying may be made a condition of the transfer of federal funds through the upcoming health accord negotiations and of course litigation has already started as the Ontario College guidelines requiring effective referral are being challenged by consortium of religious groups. Patients too may litigate if it turns out that access is being severely hampered by the exercise of freedom of conscience by individuals or institutions. The second major outstanding legal issue concerns the eligibility criteria. The government chose to exclude mature minors requests made in advance of loss of capacity and individuals whose sole condition is a mental illness. They also bake some exclusions into the legislation by saying that medical assistance and dying is only available to those whose conditions are incurable who are in an advanced state of irreversible decline in capability and whose natural death has become reasonably foreseeable. There will be workarounds for one of the to be determined issues specifically advanced requests. We will see those who can that is where provincial territorial legislation allows refuse food and water through advance directives and others will seek medical assistance in dying or commit suicide without assistance earlier than they would otherwise desire to die but before they lose capacity. There will also be workarounds for the baked in exclusions. Individuals will commit suicide without assistance. Those with money will travel to Switzerland where there is a less restrictive law. Some will request and be given terminal sedation. Others, as we have already seen in Quebec, will stop eating for long enough to get close enough to death to qualify or to make death certain enough to qualify. There will be battlegrounds as well specifically over the next two and a half years. There will be independent reviews of the exclusion of mature minors advanced requests and mental illness as the sole underlying condition. Advocates on all sides of these issues will attempt to persuade parliament to ensure that the legislation reflects their positions on these issues. Then if any of these three exclusions remain in the legislation after this review process, there will without a doubt be charter challenges launched on the grounds that the exclusions are discriminatory. For example on the basis of age or mental disability and also that they violate the right to life liberty and security of the person. There will also be charter challenges to the baked in exclusions. Specifically to the requirements that the patient's condition must be incurable, the patient must be in an advanced state of irreversible decline in capability, and their natural death must have become reasonably foreseeable. Recall that the Supreme Court of Canada with one voice declared that the criminal code prohibitions on medical assistance and dying are void because they violate the charter. Insofar as they prohibit medical assistance and dying for a competent adult person who clearly consents to the termination of life and has a grievous and irremediable condition including an illness, disease, or disability that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition. Irremediable, they added, does not require the patient to undertake treatments that are not acceptable to the individual. Contrast this with the federal legislation. There is no incurable in the Carter Declaration. No advanced state of irreversible decline in capability in the Carter Declaration. No reasonably foreseeable in the Carter Declaration. So included in the Carter Declaration and as will be argued in court required by the charter but excluded by the legislation are the following. Someone who has had three unsuccessful rounds of chemo refusing a fourth. Not incurable. A traumatic injury five years ago. No degeneration. COPD. Death is too uncertain. Parkinson's, ALS, MS, Huntington's. Death is too far off. And even a K Carter at 60 instead of 89. Death is too far off. The charter challenge has already been launched in Lamb v. Canada by the same legal team that argued and won the Carter case. This case will focus on those people who the Supreme Court of Canada said in Carter must not be prevented from having access but who will not have access under the legislation. Thus it can be seen that some aspects of end-of-life law and policy are well settled while others are in a state of flux. Some open questions may get answered and some controversies resolve through legislative action. For example areas to watch for legislative reform include advanced directives and unilateral withholding and withdrawal of potentially life-sustaining treatment at least in some provinces or territories. In addition the independent reviews commissioned by the federal government may result in legislative changes to the federal legislation about mature minors, requests made in advance of the loss of capacity, and inclusion of individuals whose sole condition is a mental illness. Some of the questions and controversies will require litigation. For example court challenges to the College of Physicians and Surgeons of Ontario duty of effective referral and to the eligibility criteria in the federal medical assistance and dying legislation that has already been launched. It's difficult to predict where we will land with respect to all of these issues but it is certain that the description of end-of-life law and policy that will be described in this module in five years time will be very different from what you just heard today. For more information about matters introduced in this module and to keep up with developments as they happen I recommend visiting eol.law.dow.ca where we explain end-of-life law and policy in Canada, provide links to useful resources, and offer updates as the law is reformed.