Time for school education on death, end-of-life care, and serious illness

Dr. Michael Wong is a senior emergency medicine resident and ultrasound fellow at The Ottawa Hospital and University of Ottawa, Canada. Here he discusses his Age and Ageing paper, Does the public feel prepared to be substitute decision-makers? Gaps in preparedness and support for a high school curriculum: a national survey. Follow on Twitter via @mchlwng @emergmedottawa

HIV/AIDS taught us the importance of public sex education. Now, COVID-19 teaches us the need for public death education.

Factories churn out ventilators by the thousands, but it is up to health care professionals and families to communicate and ensure we use those ventilators appropriately, in line with the patient’s values. Are we ready?

As a society, we have promoted the use of “living wills,” and advance care planning for decades. Yet in our nation-wide survey, only 23% of Canadians have participated in advance care planning. This is similar to several other studies over time, suggesting progress has been slow.

While 75% of our participants report understanding their loved one’s values, only 56% have actually had that conversation. It’s difficult to truly represent someone’s wishes without discussing them ahead of time. More concerning, 38% were unaware that in acting as a substitute decision-maker (SDM), one must act in the best interests of the patients and in-line with the patient’s known wishes, values and beliefs. These are big gaps.

We as a society must be better prepared for serious illness. Maybe it’s time for a new approach. In addition to asking people to write their own advance care plans, we should also be teaching each other to prepare to be substitute decision-makers on behalf of loved ones.

Other studies have shown how difficult it can be to be an SDM, with feelings of loss, grief, and guilt over decision-making. In our survey, only 53% of Canadians feel prepared to be an SDM even though 71% felt it was likely they would have to act as an SDM in the future.

High school education is needed around this issue for several reasons. First, in Canada, the law bestows the right to act as an SDM at the age of 16-19, depending on province or territory. Although most people forced to become SDMs are older, we must prepare our youth for this responsibility. Teaching the underpinning principles will have a lasting effect later in life, and echo through families because of the discussion students will have with loved ones.

Our survey suggests that maybe society is ready for this. In our survey, 61% of Canadians supported the idea of preparing young people for their future responsibilities around serious illness and end of life care, with 28% neutral and only 11% against the concept. Pilot programs in Italy, California, and Canada are already underway.

Although COVID-19 has taken so much from us, we must remember that the legacy it leaves is up to us. Teaching our youth about serious illness and end-of-life care will change our society for the better.

Read the Age and Ageing paper Does the public feel prepared to be substitute decision-makers? Gaps in preparedness and support for a high school curriculum: a national survey