Family rights and patient autonomy must be balanced in MAID reforms

In November 2024, the Government of Alberta announced it’s considering changing the medical assistance in dying (MAID) program. Central to the possible reforms is an effort to enable families to challenge end-of-life decisions and access private medical records. This announcement departs from the current guidelines of the College of Physicians and Surgeons of Alberta (CPSA), which prioritizes patient autonomy. Critics warn Alberta’s changes could lead to privacy violations and compromised rights. Ultimately, medical professionals must put patients’ rights to privacy and autonomy before family involvement in their care.

Since 2016, over 4,000 Albertans have enrolled in MAID under the CPSA framework. The current framework prioritizes autonomy and self-determination and thus allows patients to choose whether to and how to involve family. The reforms the province is considering could set a precedent for greater family involvement in medical care, which might improve emotional support and advocacy for patients. However, the potential negative impacts on patient autonomy, privacy, and Alberta’s health care system outweigh these positive aspects. 

Part of the reforms the government is considering include creating a second oversight agency, a dispute mechanism for families, and a framework for accessing confidential MAID information. This would allow families to contest approved decisions and access the private medical records of a patient opting for MAID. 

The debate over the proposed reforms centers on whether increased family oversight protects patients or infringes on their rights. Two recent cases in British Columbia (B.C.) illustrate these tensions. In both cases, the patient’s family raised concerns about the patient’s eligibility and the evaluation process. These cases highlight the need for assessment processes with meaningful family engagement, particularly for requests made by vulnerable individuals with concurrent mental health conditions. However, reforms in Alberta could pose significant operational and ethical challenges for health care providers. Alberta’s health care system is already strained, with over 650,000 Albertans without a family doctor. These changes could burden an already strained system with another level of bureaucracy. Adding more bureaucracy could just lead to unnecessarily prolonging people’s suffering.

Furthermore, research indicates that managing complex family dynamics in end-of-life care, as proposed in the reforms, contributes to physician burnout. Ultimately, this compromises the quality of patient care. Moreover, health care providers could encounter ethical dilemmas when balancing patient privacy with new information-sharing requirements when families request confidential medical information. Fear of repercussions for noncompliance could further burden physicians, as highlighted by recent cases where families legally challenged MAID approvals. Proposed reforms may harm providers’ well-being and increase burnout, jeopardizing patient care. 

Introducing new family dispute mechanisms and information sharing would complicate MAID protocols. This could lead to delayed care decisions and prolonged patient suffering. In addition to delayed care, expanded family involvement could pressure patients to change their end-of-life choices to satisfy their family’s wishes. Families may prioritize their emotional needs over the patient’s wishes, undermining the physician’s duty to uphold non-maleficence. 

Considering the complexities of expanding legal family involvement, the province should explore alternatives to improve the MAID process. Alberta could establish dedicated MAID counselling or mediation programs to preserve patient autonomy while providing emotional support for families. Within this, patients can determine their level of family involvement in these activities, maintaining control over their decisions and privacy. 

It’s still essential to provide support for family members, as they may experience prolonged grief or trauma following the death. The province could implement palliative care teams to assist patients and families throughout the process, similar to successful hospice care models. Additionally, the province could expand mental health supports for families coping with a loved one’s choice. These measures would address concerns without infringing on a patient’s right to choose. Health care facilities could implement optional family liaison positions to enhance communication without burdening medical staff.

The MAID reforms debate is relevant for University of Alberta students, especially for those in health care and law programs. As future providers, they will navigate complex protocols and patient autonomy requirements, while future policymakers and lawyers will shape legislation and family involvement. Besides, many students will encounter these issues in personal contexts. The U of A can streamline health care education to equip providers with ethical decision-making and encourage discourse about these potential reforms so students can become contributing members of the knowledge society. Altogether, U of A students are in a unique and progressive position to impact end-of-life care in Alberta.

As Alberta advances these reforms, it is crucial to balance family involvement with patient autonomy. Families provide valuable support, but their role shouldn’t compromise individuals’ rights to make end-of-life decisions. The success of these changes depends on protecting patient rights, addressing family interests, and enabling the healthcare system to implement them effectively.