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An end-of-life guide’s perspectives on Advance Care Planning

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Stefanie Coutu
Stefanie Coutu, a Mental Health and Substance Use Clinician and End-of-Life Guide (Doula),

Like most people, I’ve come to appreciate death and dying as much more than medical eventualities. My experience with these natural and often profound human processes has contributed to connections with others, with my heritage, and to more spiritual connections.

Through my roles as an Indigenous (Métis) end-of-life guide (doula), social worker, and mental health provider, I’ve recognized Advance Care Planning (ACP) as a means of empowerment, advocacy, and reconciliation. ACP is both deeply personal and collaborative, promoting self-determination, respect, accountability, dignity, cultural safety, and relationships, amongst other guiding professional principles and amidst the inevitable.

Reflecting on personal experience, my stepmother’s advance care plan supported my family during the one-year period following her terminal cancer diagnosis: It served as a roadmap for navigating the otherwise impossible decisions that appeared around every corner and accompanied each treatment phase.

This one-year timeline was a sort of gift, providing her with time to explore care options, consolidate her plans, and express her wishes to key players while still capable. ACP offered my stepmother agency and control within largely uncontrollable circumstances. Knowing that we as a family were honouring her wishes brought peace and dignity to her final moments, and comfort to our grieving hearts. As a result, I understand the reassuring effect that ACP has, not only on the individual preparing for end of life, but also on others who are a part of their journey.

In 2022, I completed the Indigenous End-of-Life Guide (Doula) Training via Métis Nation BC and Douglas College, with instructor Jennifer Mallmes, co-founder of the End-of-Life Doula Association of Canada. I attended the course in Terrace, BC with 15 other Métis women to learn how to provide death- and dying-related supports to people in our Northern BC communities and beyond. Course insights undoubtedly shaped my perspective on ACP. As a group, we unpacked how broaching death, a topic often considered taboo or approached from a clinical standpoint, can include elements of joy, inspiration, humour, practicality, and honesty, regardless of one’s role in providing end-of-life care.

Jennifer advocates for normalizing death and dying as natural and unpredictable processes that people can and should prepare for. Similarly, ACP can be completed by almost everyone, irrespective of any life-altering diagnosis, illness, or anticipated life expectancy.

As students, we were prompted to contemplate our own advance care plans. Engaging in ACP, I realized that such planning requires considerable time, reflection, exploration, research, and courage. The evolution of my advance care plan, marked by several revisions, reflects my growing comfort with visualizing and preparing for my death, as well as the adaptable nature of ACP in supporting people through different life stages and events.

The course highlighted intersections of ACP and culture, such as views and beliefs about life and death, traditional customs, historical influences, and practical factors like location and available resources. ACP involves understanding and honouring people’s diverse end-of-life needs and preferences, thereby promoting cultural safety. I see potential for ACP to serve a reconciliatory role by enabling and empowering Indigenous people to uphold their rights to practice end-of-life customs and receive care that may diverge from standardized Western healthcare practices.

Course teachings revealed my misconceptions and gaps in knowledge regarding the formal, legal, and administrative components of death and dying. For example, key topics covered in ACP include the distinction between Temporary Substitute Decision Makers (TSDM) and named representatives, along with different types of representation agreements like Standard Representation (Section 7) and Enhanced Representation (Section 9). Both forms can be found in the My Voice Advance Care Planning Guide.

Did you know that Section 9 agreements are necessary for appointing representatives for personal care and health care decisions, including those related to life support and medical interventions? Have you considered who should be making these decisions on your behalf in case of an unforeseen event?

ACP holds significant relevance within my professional roles as a social worker and mental health provider. As a process, it embodies guiding principles and ethics. For example, ACP emphasizes empowering people to make informed decisions about their end-of-life care, aligning with the social work principles of self-determination and autonomy, and practice standards for informed consent.

ACP addresses social justice and inequalities by ensuring that people from diverse backgrounds have access to culturally and otherwise meaningful end-of-life care options. Social workers, with their emphasis on advocacy and empathy, play a crucial role in facilitating ACP discussions, especially among underserved populations who may face additional barriers in accessing health care and social services. Using communication skills (micro skills), cultural competence, and the ability to navigate systems and family dynamics can be invaluable in guiding individuals and loved ones through ACP. As a deeply personal process, ACP requires a person-centred, individualized approach. Using ACP as a tool, social workers may inherently promote human rights, dignity, and respect in end-of-life care decision-making.

ACP holds particular significance within the mental health field, especially for individuals dealing with risk factors such as substance use, self-harm, violence and abuse, unsafe housing, and suicidality. Encouraging clients living with these challenging circumstances to engage in ACP discussions is crucial. As health care professionals, our inherent bias toward preserving life often shapes our therapeutic approaches and treatment decisions. Yet incorporating ACP into our practices can help normalize conversations about death, dying, and grief/loss, while also reducing stigma and shame surrounding high-risk behaviours and potential outcomes.

I sometimes feel that our health care system has lost touch with the naturalness of dying and the importance of family and community involvement throughout this process. In acknowledging this disconnect, we may have also lost touch with how to best support people going through it.

Still, I believe that humans possess an innate understanding of their needs for this journey—whether intuitive or via other ways of knowing—and ACP is a powerful tool for ensuring these needs are met. I remain committed to advocating for ACP across all my roles, which includes discussing ACP with clients accessing MHSU services, and providing end-of-life guide (doula) services within my private counselling practice.

ACP Month serves as a reminder of the importance of ongoing education and dialogue surrounding death and dying for all health care professionals. I urge you to engage in ACP for yourself if you have not done so already, and to encourage your loved ones and patients/clients to do the same.