It’s about time for the mature youth population to be considered for the request of MAID in Canada?

Palliative care is a specialized form of healthcare for individuals and families who are living with a life-limiting illness that is usually at an advanced stage. The goal of palliative care is to provide comfort and dignity for the person living with the illness, as well as the best quality of life for both the person and their family. For more than fifteen-years, I have been working with Oncology and Palliative care patients. My role is very rewarding and comes with a lot of responsibility as end-of-life requires a different approach in nursing care. End-of-life is complex in nature. I work along the side of other disciplinarians to establish decision-making processes that reflect physiologic realities, patient preferences and the recognition of what, clinically, may or may not be accomplished. Establishing goals of are essential at end-of-life and working with a palliative care team helps make the transition for patients easier.

Palliative care in the past few years has change with the introduction to Medical Assistance in Dying (MAID). As of June 17, 2016, the Canadian government legalized (MAID) across the country by giving Royal Assent to Bill C-14. The legalization of MAID has been the most profound movement for change in healthcare in Canada. This Act made amendments to the Criminal Code and other Acts relating to MAID, allowing physicians and nurse practitioners with the support of other healthcare professionals to offer clinician administration and self-administered MAID in conjunction with pharmacist being able to dispense the necessary medications [1,2]. Bill C-14 is a federal legislation that legalized MAID across Canada and now provides more choices to Canadians in end-of-life decision-making. The individual must first make a voluntary request for MAID that is without external pressure and given consent to receive MAID after being informed of all the possible methods of relief from suffering, such as palliative care interventions [1,2].

The eligible criteria for MAD indicates that the individual:

1. Must be a recipient of publicly funded health services in Canada;

2. Be at lest 18 years of age;

3. Be capable of health-related decision-making; and

4. Has a grievous and irremediable medical condition [1].

Since the approval of MAID in 2016, more than 8,000 individuals across Canada had received MAID, with most diagnoses of end-stage cancers, or neurological or cardio-vascular illness. Currently, Canada’s government is now considering whether to expand the criteria for access to MAID to advance request for those who anticipate that they may lose the capacity to request it in the future by advance directive, mental illness as the sole underlying medical condition and mature minors [1,2]. The Council of Canadian Academies (CCA) reported to the Parliament on whether to expand access to MAID back in December of 2018 had rejected the idea that MAID should be made available to mature minors. The Parliament viewed children as a vulnerable population and are influenced and maybe pressured by adults in numerous ways. Canada’s first priority must be to provide high quality medical care for children as a first solution [2]. The committee raised the issue that the concept of a mature minor is not universal in Canada. Additionally, some provinces recognize 19 years of age to be the age of majority, whereas some provinces recognize 18 years of age. Quebec does not recognize mature minors and instead groups minors into categories of individuals between the ages of 14 and 17 years of age and under the age of 14 years. It was argued in the report that research has shown adolescents possess the necessary cognitive abilities to make decisions and age is an arbitrary cutoff for deciding competence. Finally, the committee included a warning that there may be future legal implications when a mature minor requests MAiD and that denying their request may infringe upon their rights and freedoms [1].

To consider expanding MAID to mature minors in the absence of widely available, high quality mental health services and palliative care would be unethical. Moreover, there has been no agreement about minors having a capacity to consent to MAID. The law sets an age at which Canadians may make significant decision such as the right to vote or to purchase alcohol or cigarettes. It is only appropriate and reasonable that a life-ending decision should be restricted to a similar age [2]. According to the Canadian Paediatric Society, physicians are increasingly being asked by children, adolescents and patents about medically assisted death. The Toronto’s Sick Kids hospital proposed a preliminary draft policy on the request for MAID with a group of Department of Bioethics and the medical director of Palliative Care and is composed of experts from nursing, pharmacy, psychiatry, quality and risk management, oncology, intensive care, paediatric rehabilitation and public affairs on MAID for patients at Sick Kids who continues care at the facility after they turned eighteen years of age. In most provinces, the law already allows mature minors to make decisions about their own care,such as opting for palliative sedation [2,3].

Stated by the Toronto Hospital for Sick Kids, “As a paediatric hospital, it would of course be possible to refer patients aged 18 years who request MAID into an adult care setting. However, our working group felt that it would be antithetical to our philosophy of care to transfer patient most of whom have long-standing relationships with our hospital—into a new and unfamiliar care setting for a procedure that could be safely and effectively performed at this institution. For this reason, and with an eye to a future when MAID may well become accessible to capable minors, the hospital undertook the process of developing a policy for managing MAID in our paediatric setting [3].” To date, the Netherlands and Belgium are the only countries to include policies around MAID services to minors in their legislation, whereas all other jurisdictions limit MAiD services to individuals over the age of 18 years. The Netherlands also passed legislation to allow individuals at least 12 years of age to request MAiD themselves, requiring parental consent until they reach 16 years of age. Minors aged 16–17 years are permitted to request MAiD without parental consent. It is important to note that it is required under Dutch law to consult the parents, although the parents do not own the right to override the decision made by the adolescent. Under some circumstances, individuals between the ages of 12 and 16 years whose parents do not consent to MAiD services for their child may be granted MAiD if they are deemed competent of making the decision and vulnerable to intolerable suffering. Recent articles have argued that the extension of MAID services to individuals under the age of 12 years is appropriate and necessary based on the argument that 12 years is an arbitrary age limit. Furthermore, parents of children under 1 year of age are given the option to request MAID for there suffering child. For this reason, assuming there still exists a systematic, formal decision-making process between the child, parents, and physicians, it is possible that age limits are unjustified [3,4].

A question to ask oneself…Is it fair to allow an 80-year-old with terminal cancer the choice of a peaceful death but deny a 17-year-old who has been given the same prognosis and who demonstrates as clear a capacity to make the decision as an adult does?

An extensive and inclusive national discussion on MAID eligibility is currently under in Canada. Access to high quality palliative care is an essential prerequisite for children or youth facing death, including those patients or parents who may be considering or exploring MAID. The Canadian Paediatric Society recommends that clinicians advocate within healthcare system to:

1. Design, fund and deliver child/youth focused palliative care, equipped to serve children and families in setting of they're choosing, while improving access to palliative care services in homes and communities [4];

2. To better understand the risks and benefits of extending MAID to mature minors in the Canadian context;

   1. Evaluate and learn from current MAID policies and experiences for adult patients, both in Canada and elsewhere [4].

   2. Undertake a comprehensive consultation involving: the parents/guardians of children and youth who are terminally ill; youth who are terminally ill; and healthcare professionals who care for children and youth who are terminally ill [4].

3. Governments at every level develop policies and procedures to safeguard young people from possible risks, harms or abuses of MAID, given their unique vulnerabilities [4];

4. Procedures for assessing a minors personal capacity to make health decisions rest with the patients’ clinical team and parents, in consultation with other designated experts (bioethicists, psychologist, psychiatrists) [4].

While there is still much work that needs to be done in order to consider allowing Canada’s legislation to pass a bill for MAID for mature minors, I am optimistic that this will be achieved in the near future. Mature minors should have the right for MAID when a terminal illness is present and to allow the end of any kind of suffering. MAID truly needs to be recognized as apart of palliative care as a whole.

Reference

[1].Council of Canadian Academies. (2018). The Stats of Knowledge on Medical Assistance in

Dying for Mature Minors. Retrieved October 1, 2020 from, https://cca-reports.ca/wp-content/uploads/2018/12/The-State-of-Knowledge-on-Medical-Assistance-in-Dying-for-Mature-Minors.pdf

[2] Davies, D. (2018). Medical assistance in dying: A paediatric perspective. Paediatrics & Child Health, 2, 125. https://doi.org/10.1093/pch/pxx181

[3] DeMichelis, C., Shaul, R.Z., & Rapoport, A.(2018). Medical Assistance in Dying at a paediatric hospital. Journal of Medical Ethics 0(1), 1-8. doi:10.1136/medethics-2018-104896

[4]. Patton, M., & Dobson, K. (2020). Proposal for the extension of rights to medical assistance in dying (MAiD) to mature minors in Canada. Canadian Psychology/Psychologie Canadienne. https://doi.org/10.1037/cap0000219