Our experts explain the importance of advance care planning for people of all ages and highlight how research is improving the process.
Advance care planning is the important process of thinking about what matters most to you when it comes to future health and personal care decisions. This involves sharing your values, beliefs and wishes with your care partners and loved ones and recording them so that if you cannot speak on your behalf, a representative is able to share your wishes with health care team members.
Vancouver Coastal Health Research Institute (VCHRI) researcher Dr. Amrish Joshi, along with palliative care experts Lara Musa and Monica Kelly, explain the process of advance care planning in British Columbia and share how research is helping to improve end-of-life care for people from all cultures and backgrounds.
Q: Who should consider advance care planning? Is it something that I need to think about even if I’m young and healthy?
A: All capable adults are encouraged to have an advance care plan. Unfortunately, accidents can happen to any of us. An advance care plan empowers you to predetermine who health care providers will connect with to ensure the care that you receive aligns with your personal values.
Speaking to important people in your life about your health preferences is a gift that you can offer them to ensure that they understand what you would, or would not, want when it comes to medical interventions. If you do not assign a representative — such as a trusted family member or friend — a health care provider will select a decision maker from the order that the B.C Ministry of Health has outlined in the Temporary Substitute Decision Maker list.
Q: What tools or resources are available to help me have these conversations with my loved ones or health care team?
A: My Voice is a great book that can guide you in communicating your highest priority preferences for health care. It includes forms that can support you in identifying your advance directives and your chosen substitute decision maker. There is no cost to complete these forms, and they can be updated at any time. The Nidus Personal Planning Resource Centre is another great resource that provides education on personal care planning.
Q: How do cultural or personal values shape advance care planning?
A: There are a number of factors that need to be considered when having advance care planning discussions. One’s culture, social and personal beliefs can significantly affect one’s comfort level and perspective when it comes to these types of discussions. For instance, a person’s cultural and personal values may influence how they define concepts like quality of life, suffering or dignity. Some individuals may find advance care planning empowering, while others may find it emotionally distressing or taboo.
Q: Why is it important to tailor advance care planning approaches to the unique needs and experiences of diverse populations?
A: Research shows that considering a person’s wishes, goals and values in the context of health care can improve their quality of life outcomes. Advance care planning discussions are deeply personal, and without taking in to account the cultural context of each individual, a health care provider may struggle to effectively understand an individual’s values and preferences for care. Thus, tailoring the approach can help to ensure that people feel seen and heard — not just as a patient, but as a human being with unique values, hopes and fears. When advance care planning is approached with humility and curiosity, it can lead to care that aligns more closely with the individual’s definition of comfort and meaning.
Q: How is research helping to improve serious illness and end-of-life care for people from all backgrounds?
A: Research is helping to uncover the systemic and cultural gaps that can prevent meaningful conversations about serious illness. Several standardised tools, such as the Serious Illness Conversation Guide, are available to help clinicians discuss a patient’s preferences for medical care should the patient’s condition change in the future. There is a growing awareness that these tools need to be able to support an exploration of the values and beliefs of people from diverse backgrounds. Approaches to better corporate cultural awareness and sensitivity into health care delivery may include ensuring that the language that is used aligns with that of the individual and involving family members in conversations surrounding care options or decisions.
Research is also shaping clinician training, including approaches to support moving beyond using rigid scripts to guide patient conversations and toward more relational, culturally sensitive approaches that can honour the human experience at the end-of-life.
