Two things you should be thinking about now
Many caregivers feel uncomfortable talking about end-of-life planning or advance care planning with the person they care for but it’s an important conversation to have. It can also be a very meaningful conversation when the focus is on how the care recipient wants to live in the later stage of life.
When it comes to advance care planning, caregivers may wish to consider two steps to prepare themselves, their care recipient or other family members:
- Identify your substitute decision-maker
If there comes a time when a person is not able to make decision for themself, someone else will need to make those decisions on their behalf. This person is called a substitute decision-maker (SDM). In Ontario the Health Care Consent Act outlines a default substitute decision-maker according to a hierarchy beginning with a spouse or partner, parents or children, siblings or other relatives, and if needed, a public guardian or trustee. Anyone can choose their substitute decision-maker by legally appointing them
2. Prepare your substitute decision-maker
Once you have identified a substitute decision-marker, or if you are the substitute decision-marker, you may wish to reflect on your care recipient’s values such as:
- What is important to you?
- What makes life worth living?
- What kind of living would you accept?
- What trade-offs would you make?
- What does suffering mean to you?
- What makes it good to be alive?
Substitute decision-makers and their care recipient, and other family members or caregivers, may wish to engage in discussions around these questions, and review over time. As the law says that every medical decision requires consent from a capable person, written documents cannot be used in lieu of making those decisions; that’s why it’s important to understand that writing down notes from these conversations can guide you but cannot be used in lieu of making decisions when the time comes.
Some tips for approaching Advance Care Planning may include:
- Take your time to reflect on your values as a caregiver, and your care recipient’s values
- Have the conversation more than once
- Review the information with your care recipient
- Focus on values, not treatments
For more information on how to approach these conversations and examples of how they may apply in the context of caregiving, you may wish to watch our webinar on Advance Care Planning led by Dr. Leah Steinberg and Dr. Jeff Myers, which covered the fundamental aspects of advance care planning (ACP) for caregivers, and the important concepts in caring for people with advanced illness, such as resuscitation status (including DNR/DNI status), CPR and the meaning of palliative care.
Some useful resources were shared during the webinar, that may be of assistance to caregivers who are preparing Advance Care Planning for their care recipient, or for themselves:
- Tuesdays with Morrie by Mitch Alboom
- Being Mortal by Atul Gawande
- “My Own Life” Op-Ed by Oliver Sacks
- The Last Lecture by Randy Pausch
- Cardio-Pulmonary Resuscitation (CPR): A Decision Aid for Patients And Their Families
- Speak Up Canada: Advance Care Planning in Canada
