This article was written by Susan Blacker, Provincial Clinical Palliative Care Co-Lead, Ontario Health.
Talking about serious illness and end-of-life care decisions is uncomfortable for a lot of people, even health care professionals. But during the pandemic, many of us saw the realities of how quickly someone’s health status can change. There is now a sharper focus on the kinds of care decisions those who are seriously or critically ill, and those who care for and about them, may face.
Advance care planning is a process of having conversations that are intended to help people and their substitute decision-maker(s) prepare for future health care decisions in case the former are unable to make their own decisions. This could happen because they are too sick or unconscious, during surgery or as the result of an accident. If the individual recovers and becomes mentally capable again, they will make their own decisions again.
Asking “What If…”
Advance care planning is not consent for any treatment in the future. But it can help patients, their caregivers and health care providers prepare for future health care needs.
Health care providers can encourage their patients who live with chronic or life-limiting illnesses and their caregivers/essential care partners to start these conversations with prompts such as:
- If you became seriously ill or your current condition deteriorated, who would be your substitute decision-maker?
- What would you want to have happen in terms of your care if you could not make decisions for yourself?
- What worries or concerns do you have about your future health?
- What information about your illness would be helpful or important for you to know? What don’t you want to know?
Values and Beliefs
It can be difficult to anticipate what specific decisions might need to be made at a future point in time. However, health care providers can encourage patients to think about their values, beliefs and what quality of life means to them, and to talk about those views with their family and their substitute decision-maker. These conversations provide direction when making health care decisions and help provide clarity later about what people want and don’t want in terms of outcomes of treatment.
Substitute decision-makers need to know this, as it is an extraordinary responsibility for someone to make such decisions without prior understanding of what matters to the ill person. Being able to refer back to such important conversations and convey this information to health care providers at the time of a crisis – and when a decision needs to be made – is very helpful and can significantly decrease the burden and stress experienced by the substitute decision-maker. These conversations are vital to ensuring patients receive high-quality care that honours their values, wishes and goals.
Added Resources
To learn more, see FAQs about advance care planning. Speak Up Ontario offers a downloadable workbook that helps people identify their substitute decision-maker, think about their priorities and values about their health, and start to have these very important conversations.
Ontario Health’s Palliative Care Quality Standard addresses palliative care for adults living with a serious, a progressive life-limiting illness, and for their family and caregivers.