Dr. Debbie Selby, MD, FRCPC, Staff Physician in the Palliative Care Unit at Sunnybrook Health Sciences Centre.
Sally Bean, JD, MA, Director, Ethics & Policy, Sunnybrook Health Sciences Centre; University of Toronto Joint Centre for Bioethics; Adjunct Lecturer, Dalla Lana School of Public Health; Adjunct Lecturer, Institute of Health Policy Management & Evaluation; Associate Member, School of Graduate Studies.
Medical Assistance in Dying (MAiD) has been a legally available option for patients meeting eligibility requirements since June 2016. In February 2015, the Supreme Court of Canada ruled in Carter v. Canada (Attorney General) that a criminal prohibition on assisted death violated the Canadian Charter of Rights and Freedom (1). Bill C-14, which amended the federal Criminal Code, outlines the eligibility and procedural requirements an individual must satisfy in order to be eligible for MAID (2). Drawing on our experience in an academic teaching hospital in Ontario, we will provide an overview of the eligibility and procedural requirements, discuss the clinical provision of MAID to eligible persons, highlight some common characteristics of those choosing MAiD, and identify challenges faced by both patients and healthcare practitioners related to access and provision of MAiD. Read More
The Criminal Code requires a patient to satisfy all of the following eligibility criteria: eligible for health coverage from a government in Canada; 18 years of age or older; have a grievous and irremediable medical condition; make a voluntary, written request for MAiD; and give informed consent to receive MAiD. The legislation further defines a grievous and irremediable medical condition in four subparts: i) a serious and incurable illness, disease or disability; and ii) the individual is in an advanced state of irreversible decline in capability; which iii) causes enduring physical or psychological suffering that is intolerable to the patient and cannot be relieved in a manner they consider acceptable; and iv) 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 they have remaining (2).
In terms of procedural requirements and safeguards, the voluntary request must be written and witnessed by two independent witnesses (i.e. persons not involved in the provision of clinical care nor financially benefitting from their death, e.g. inheriting from patient’s estate or life insurance beneficiary). Provision of informed consent must include a discussion of alternative options for both ongoing and end-of-life care, including choices around treatment options such as palliative care. It is important to note that there is no requirement for any therapies to be accepted by a patient, including options as basic as antibiotics, and ranging to more complex interventions such as chemotherapy, respiratory support, and dialysis to list just a few.
The requirement for a “reasonably foreseeable natural death (RFND)” has been one the assessors and providers of MAiD have struggled to interpret since the Criminal Code amendment. However, in 2017, an Ontario Superior Court Judge elucidated in AB v. Attorney General (Canada) that there is no requirement that death be expected within any particular time frame and when determining eligibility an assessor does not need to opine on the length of time an individual may have remaining (3). Therefore, RFND does not imply a time-based prognosis. Rather, if a patient is on a trajectory towards death and meets all other eligibility criteria, they are likely to be found eligible. For non-malignant illnesses such as COPD, this is particularly relevant as time-based prognosis is exceedingly difficult for such patients, yet as they experience an ‘advanced state of … decline in capability’ with progressive loss of functional capacity, they may quite readily meet criteria for RFND.
A patient requesting MAiD must be assessed and found eligible by two independent practitioners, and must have capacity to make health care decisions both during the assessments and again immediately before MAID is provided. A further procedural safeguard outlined in the legislation is the need to wait ten ‘clear’ days following completion of the written request (the day of signing and day of provision are not counted as part of the 10 days). Should a patient be felt to be at high risk of imminently dying, losing capacity, or both, this wait period can be shortened; however, if capacity is lost, a substitute decision maker (SDM) is not legally allowed to consent to MAiD on the patient’s behalf, irrespective of the previously signed request. Additionally, advanced directives cannot be used to request MAiD.
The law allows either patient self-administration (via oral medications) or provider administration (via intravenous medications). In Ontario, as of February 2019, only one of 2789 completed MAiD cases has been self-administered (4), in part due to a higher complication rate as well as the unpredictable time course for death to result following oral administration. Intravenously administered MAiD can generally be provided in the patient’s home, in long-term care homes, retirement facilities, hospitals or palliative care units, though the province of Ontario permits faith-based institutions to institutionally opt out from providing MAiD. In contrast to the oral route which takes a longer time frame to cause death, with intravenous provision, death occurs within minutes.
Following provision of MAiD, providers in Ontario are required to notify the coroner’s office, and submit the required documentation for review, as the coroner’s office provides oversight to ensure the legal process has been appropriately followed. The death certificate is completed by the provider that administered MAiD and lists only the underlying illness which made the individual eligible. There is no mention of MAiD on the certificate and Ontario legislation was passed categorizing MAiD as a natural death (versus suicide) wherein there can be no denial of life insurance benefits.
In Ontario, similar to other jurisdictions that permit aid-in-dying, the significant majority of those choosing MAiD have an underlying cancer diagnosis (5,6,7,8,9). As of February 2019 in Ontario, 63% of those completing MAID had cancer, 16% had cardiac/respiratory disease and 12% had neurologic illnesses. Demographics are also quite consistent across different jurisdictions showing an equal gender split (50/50 in Ontario) and an average age in the 70’s. In Ontario the age range has been 22 to 105 years with a mean of 72 years (4). Locally we have noted that most patients who go on to complete a formal written request and are then found eligible do go on to receive MAiD, with only a tiny minority ultimately choosing a different path.
The vast majority of patients that choose MAiD cite loss of independence and declining functional capacity, which has diminished or eliminated their ability to participate in activities associated with quality of life, as their motivating reason. Intractable physical symptoms (such as pain or dyspnea) are rarely identified as an important driving factor in choosing MAiD. Studies out of Oregon (7,8), where assisted death via self-administration has been legal since 1998, have shown that approximately 90% of patients have cited loss of autonomy or a decreased ability to participate in enjoyable activities as their reason for choosing hastened death (8). This is in keeping with the finding that most patients accessing assisted dying both in the US and Canada have been receiving palliative care services (5,8, 10), and that physical symptoms are generally being addressed. Locally, at our tertiary care institution, our experience mirrors the motivating reasons patients have identified for seeking MAiD from other previously noted jurisdictions. Our local institutional metrics demonstrate that over 80% of those choosing MAiD are followed by palliative care, and only rarely has a physical symptom been the driving force behind a MAiD request. Additionally, our data reflects that those choosing MAiD frequently have a long-standing life philosophy where autonomy and independence have been of paramount importance to them. Therefore, any erosion of autonomy and independence signify an intolerable decline in quality of life.
MAiD remains a relatively new option for patients, with ongoing evolution in both process issues and interpretation of the legislation. Some anticipated barriers seem to have been more minimal than expected, whereas others have proven to be an ongoing challenge. Access, for example, remains difficult for many, particularly in small communities where there may be no practitioners willing to provide MAiD, or only a very small number of assessors/providers, who have time constraints limiting their accessibility. To address potential access barriers and facilitate the referral process for healthcare practitioners that conscientiously object to participating in MAiD, the Ministry of Health of Long-Term Care in Ontario established the MAiD Care Coordination Service which can be access by patients directly or via their healthcare practitioner.
Locally, many of our patients have commented on their frustrations of needing to raise their request for MAiD several times before being ‘heard’. Patients may be uncomfortable directly asking about MAiD and it is incumbent on all health care providers to be alert to more subtle messaging from patients, including phrases such as ‘this is getting too hard for me’ or ‘I am not sure I can take this much longer’ or even direct questions around ‘how much longer do you think I have’ (11). Indeed, any of these questions could well prompt an exploratory conversation about goals of care and end of life preferences, with openness that patients who do want more information about MAiD can receive it (11, 12).
One anticipated barrier that locally has been quite rare is that of family members strongly dissenting when a patient has requested MAiD. We have found family members overwhelmingly supportive of their loved one’s choice, even if appropriately saddened by the impending loss, often noting that this has been the patient’s long-expressed philosophy. In instances where conflict or disagreement has arisen, the availability of an inter-professional team including ethics, nursing, chaplaincy and social work has been important. We have found that being able to talk through the reasons for diverging opinions, focusing on validating each parties’ beliefs, but maintaining the autonomy of the patient to act on their own values and beliefs, has been helpful. In over 100 cases to date, rarely has there remained significant family dissent by the time of provision.
One final challenge that continues to need ongoing attention is that of changing capacity, given the legal requirement for consent immediately prior to administering MAiD. Within our acute care institution roughly 50% of cases need the wait time shortened due to risk of loss of capacity. Across Ontario, the rate is just under 25% of cases. This can pose logistical challenges if urgent provision is needed, but also causes significant anxiety for patients, who worry that the ‘window of opportunity’ may be lost. Indeed, our experience has been that family members are typically just as worried as patients about potential loss of capacity with many advocating to shorten the wait period. When loss of capacity has precluded MAID eligibility and/or provision, family members have felt quite distressed, feeling that they failed their loved ones by not ensuring they received the death they had wanted. Such worries speak to the need for patients to be heard and addressed promptly when they inquire about MAiD.
Despite some of the challenges and barriers described, the trend is for increasing numbers of patients to both choose and be provided with MAiD. Feedback from families where MAID has been provided is strongly positive (13), and as programs continue to develop and accessibility issues continue to be addressed, it is anticipated that MAiD deaths will likely continue to rise, from the current approximate 1% of all deaths nationwide to between 1 and 2% of all deaths.
In summary, we have provided an overview of the MAiD process, identified emerging trends including ongoing challenges that we have observed within an Ontario acute care setting. While we are almost three years into MAiD being a legally available option across Canada, we are still in the relative early days and more data, shared experiences and the ability to compare data across provincial and territorial jurisdictions in Canada will facilitate additional insights.
- Carter v. Canada (Attorney General) 2015 SCC 5
- Criminal Code, R.S.C., 1985, c. C-46.
- AB v Canada (Attorney General) 2017 ONSC 3759
- Office of the Chief Coroner/ Ontario Forensic Pathology Services. MAID Data Statistics as of Feb 28, 2019.
- Rosso A, Huyer D, Walker A. Analysis of the Medical Assistance in Dying cases in Ontario: Understanding the patient demographics of case uptake in Ontario since royal assent and amendments of Bill C-14 in Canad Acad Forens Pathol 2017;7:263-87.
- Emanuel IJ, Onwuteaka-Philipsen BD, Unwin JW, Cohen J. Attitudes and practices of euthanasia and physician-assisted suicide in the United States, Canada and Europe. JAMA; 2016;316:79-90.
- Public Health Division, Center for Health Statistics. Oregon Death with Dignity Act 2017 Data Summary. Released: February 9, 2018.
http://public.health.oregon.gov/ProviderPartnerResources/Evaluationresearch/deathwithdignityact/Pages/index.aspx. (accessed Feb 1, 2019)
- Hedberg K, New C. Oregon’s Death with Dignity Act: 20 years of experience to inform the debate. Ann Intern Med 2017;167:579-583.
- Ball IM, Hodge B, Jansen S, Nickle S, Sibbald RW. A Canadian Academic Hospital’s Initial MAID Experience: A Health-Care Systems Review.
J Palliative Care. 2019;34:78-84.
- Wales J, Isenberg SR, Wegier P, et al. Providing Medical Assistance in Dying within a Home Palliative Care Program in Toronto, Canada: An observational study of the first year of experience. J Palliative Medicine. 2018; 21(11): 1573- 1579
- Selby D and Bean S. Oncologists communicating with patients about assisted dying. Curr Opin Supp Pall Care 2019; 13:59-63.
- Spence RA, Blanke CD, Keating TJ, Taylor LP. Responding to patient request for hastened death: Physician aid in dying and the clinical oncologist. J Onc Practice 2017;13;693-99
- Hales BM, Bean S, Isenberg-Grzeda E, Ford B, Selby D. Improving the Medical Assistance in Dying (MAID) process: A qualitative study of family caregiver perspectives. Palliat Support Care 2019 Mar 19:1-6. doi: 10.1017/S147895151900004X. [Epub ahead of print]