by Madeline Li MD PhD, Lead of Psychosocial Oncology, Princess Margaret Cancer Centre and Associate Professor of Psychiatry, University of Toronto, and Gary Rodin MD, Head of the Department of Supportive Care at Princess Margaret Cancer Centre and Professor of Psychiatry at the University of Toronto
“Personalized medicine” has become the new frontier in medical care, focused on ways to individualize treatment in order to maximize patient outcomes. At the University Health Network (UHN), this term ranges from individually tailored biological therapies to psychotherapeutic interventions. However, it could not have been anticipated that personalized medicine would come to include Medical Assistance in Dying (MAiD).
The movement to legalize assisted dying in Canada was largely propelled by changes in societal attitudes and demands, rather than by advice from health care providers or health care institutions. In response to this legislation, UHN developed a comprehensive framework for the delivery of MAiD, outlined in the May 25, 2017 issue of the New England Journal of Medicine. The aim of this framework was to ensure access to MAiD, to protect vulnerable patients from its unwarranted application, to support staff engaged directly or indirectly in this new clinical practice and in conversations about it, and to protect their right to conscientious objection.
The public debate about MAiD has been vigorous and, at times, highly polarized. A more nuanced and balanced view has emerged about the benefits and limitations of MAiD in clinical practice. While some feared that MAiD would be unwillingly imposed on more vulnerable and less valued members of society, those who have requested and received it have more often been amongst the more educated and well-positioned members of our society. Such individuals have often valued a sense of personal control over the circumstances of their lives and have applied this value to the end of their life. Rigorous assessments have ensured that those who are approved for MAiD have not lost the capacity to provide informed consent and that their judgement was not impaired by physical or emotional suffering. These individuals have also all had offered to them the full range of psychological, physical and spiritual interventions. Those who received MAiD had made a well-contemplated decision based on their values and their view of what would be tolerable to them in the weeks or months that lay ahead. Patients often responded to approval for MAID with relief and even with joy.
The journey to MAiD for some is by no means linear, although there has perhaps not been enough attention to the complexity and shifting nature of the decisions of patients over the course of the disease. Many who requested MAiD had second thoughts and ultimately chose not to end their life in this way. The idea of MAiD is appealing to some because of the sense of control it gives them over the circumstances of their death and the duration of their suffering. However, the direct confrontation with death that is required in order to extend an arm for a lethal injection is much more difficult than most people anticipate. Some who are approved for MAiD change their mind during the assessment process and some withdraw just prior to MAiD provision. The reversal of the decision for MAiD at the last minute has been highly stressful for families, the hospital staff involved, and patients themselves, with some even losing memory of the events leading up to the MAiD intervention.
Some patients have requested MAiD in response to a medical crisis, in part, to ensure that it would be available to them if needed in the future. These individuals wanted to know that they could choose MAiD as a “plan B”, while they simultaneously pursued a variety of other treatment options. However, their lack of readiness to pursue MAiD at that time actually made them ineligible for approval, according to the restrictions of the federal legislation for MAiD. The denial of eligibility for MAiD in such cases was often distressing, repeating the loss of control which had initially motivated their MAiD request.
Other patients have requested MAiD when they are within hours to days of their natural death. This request may be too late, as such individuals often lose capacity or die before MAiD can be provided. Further, it is questionable whether the precious time and energy remaining to them should be spent by them arranging for witnesses to sign forms and pursuing effortful MAiD assessment. Even more problematic for them is their withholding of pain medication, at the expense of increased suffering, to ensure that they would retain the mental competence to provide informed consent. With the ready availability of palliative care to ensure a comfortable natural death, the pursuit of MAiD so near the end of life may actually be a distraction that undermines rather than protects wellbeing at this time.
It is clear that a request of a patient for MAiD requires a fulsome conversation with the attending physician. These conversations should include clarification of the patient’s prognosis, the reasons for the request, a detailed discussion of alternative treatments such as psychotherapy and palliative care, and information on the MAiD process and experience. In essence, this is a personalized discussion to facilitate collaborative decision-making about whether MAiD is the right choice at this time. Some may perceive this process as a barrier or an attempt to dissuade patients from their request for MAiD, but it actually serves to protect vulnerable patients, to diminish harmful effects of MAiD and to protect health care providers. Even in the current climate in which the right of patients to access MAiD is highlighted, respect for human life should always be paramount.
At UHN and in the rest of Canada, MAiD is provided by euthanasia (i.e. clinician- administered lethal injection) in 99% of cases. Such an intentional action may be perceived to carry a greater weight of responsibility for health-care providers than when patients self-administer lethal medications. The safeguards in the federal MAiD legislation include a mandatory ten day waiting period to reflect on the certainty of intent for MAiD, the requirement for patients to be near end of life and to provide a second competent consent at the last moment. These measures are intended to ensure that MAiD will be administered responsibly and not impulsively, unwillingly, or unnecessarily. Extensive educational efforts and support for staff for the provision of MAiD and for conscientious objection have been built into the UHN MAiD framework. Further, the voluntary participation of health care providers has helped to ensure health care providers that their rights to conscientious objection will be protected.
Changing the law to include advance care directives may diminish the fear of some patients that they will be denied MAiD if they lose the capacity to provide informed consent before it can be delivered. Expanding the criteria for MAiD beyond terminal illness has been proposed by some, although where this boundary should be drawn or even what is a terminal illness remains controversial, with many unanswered questions about the implications for society and the practice of medicine. As with MAiD itself, decision-making about such matters will rest not within the health care system, but in the hands of the public, the courts and the legislature of Canada. We hope that the initial experience with MAiD will inform the conversations, debates and decisions about the future of MAiD in Canada.
Madeline Li is an Associate Professor in the Department of Psychiatry, University Health Network, University of Toronto and the Lead for Psychosocial Oncology in the Department of Supportive Care, Princess Margaret Cancer Centre. In addition to her clinical practice in cancer psychiatry, she conducts collaborative research in the areas of psycho-neuroimmunology, genetics and psychosocial cancer research. She has authored several publications, guidelines and interprofessional education resources on the topic of screening and treatment for distress in cancer patients. She is the developer and physician lead of the Medical Assistance in Dying program for the University Health Network.
Gary Rodin is the University of Toronto/University Health Network Chair in Psychosocial Oncology and Palliative Care and Head of the Department of Supportive Care at Princess Margaret Cancer Centre in Toronto, Canada. Dr. Rodin is also the Director of the Global Institute of Psychosocial, Palliative and End-of-Life Care (GIPPEC) and a Professor of Psychiatry at the University of Toronto. He leads a clinical and research program on the psychosocial dimensions of advanced and terminal disease and on the development and evaluation of novel interventions to improve the quality of life and the quality of dying and death in this population. He has published widely in these areas and is recognized internationally for his efforts to improve the rigor of research and the effectiveness and availability of psychosocial and palliative interventions.