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Viewpoints

It’s Time to Talk About Serious Illness

by: Cindy Dumba and Dr. Allan Grill

Canadians with serious or progressive chronic illness are feeling especially vulnerable during the COVID-19 pandemic. It has underscored how quickly circumstances can change.

Talking about a serious illness diagnosis and the impact on life expectancy is difficult.

Many Canadians are uncomfortable having these conversations, even though they know it is important.

Surveys have uncovered this paradox: while 93 per cent of Canadians think it is important to have discussions about goals and values related to their health, only 36 per cent have done so and only 18 per cent have documented them.

As a doctor and a patient, we know these conversations can make a difference to ensure that patients get the care that they want, and avoid what they do not. Research shows that early discussions about goals, values and wishes can improve the quality of life and reduce pain and suffering for a person who is seriously ill. The tools that health care can offer to prolong life, like CPR (cardiopulmonary resuscitation) or a feeding tube, often do not contribute to improved quality of life, especially for those who are frail and have reached the end of curative treatment options for serious illness.

Many Canadians are uncomfortable having these conversations, even though they know it is important.

While most Canadians do not want aggressive medical interventions in these situations, many still receive them because their wishes were not known. They may even become unable to speak for themselves, either because of physical or cognitive impairment. Knowing what patients would want can help guide medical decisions that respect their wishes.

Knowing what to say and how to say it can help people get started.

That’s why Choosing Wisely Canada, a national campaign to engage clinicians and patients about what they need and what they don’t when it comes to medical tests, treatments and procedures, is sharing resources to help support this conversation.

So, as a doctor and a patient we are urging you to have these conversations with your care providers and your loved ones.

Receiving a serious illness diagnosis is life-changing for patients. Their plans and ideas of what the future holds suddenly become uncertain. Too often patients are unprepared for what comes next. Serious illness conversations can help patients plan for the future and better understand what to expect.

Doctors and other primary care providers are often the ones who initiate these conversations after the diagnosis of a serious illness, or when they are concerned that their patients have a life-limiting condition.

Here are three things you should know about these important conversations:

First, talk about your understanding of the illness. Having a sense of what a patient’s disease trajectory looks like can help set health priorities in order to better deal with the uncertainty that accompanies it.

Second, discuss your goals and wishes. In the context of serious illness, this can be things like exploring sources of strength and support, as well as fears and worries. Patients often express concerns about how certain medical interventions will impact their independence, and what possible outcomes might result from tests or treatments.

Third, explore your values that can inform decision making and talk about trade-offs. For example, we talk about how much someone is willing to go through for the sake of added time. Discuss what to expect from treatments that might prolong life at the expense of quality.

These conversations take time, and we strongly encourage people to start talking with their health-care providers as well as their loved ones. Having a trusted person who knows your wishes means that they will be honoured and communicated, even if you can no longer speak for yourself.

Don’t wait until it’s too late. It’s time to talk.

Allan Grill is a family physician in Markham, Ont., and an associate professor in the department of family and community medicine at the University of Toronto.

Cindy Dumba is a patient and family adviser for Choosing Wisely Canada and Choosing Wisely Saskatchewan.

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