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Substitute decision-makers and the health care system

It’s a good idea to have a conversation about who will make health-care decisions on your behalf — and what those decisions should be — if you’re ever not able to decide for yourself, says Toronto health lawyer Mary Jane Dykeman.

“Sometimes people say, ‘That’s okay, I’ve got a will,’” Dykeman says in an instalment of The Power of Attorney Project Podcast, part of Caregiving Matters, called “Helping substitute decision-makers navigate the health system.”

“A will is important for many other reasons but a will kicks in once you have died. We’re talking about what happens when you’re alive and you've become incapable.”

It can be complicated for a substitute decision-maker to navigate the health-care system and ensure that health-care decisions reflect what the person would want if they were still capable, says Dykeman, partner at DDO Health Law.

“It’s tough to have that role. It’s not as though there’s a special course people can take,” Dykeman says. “If you're the person who's going to step up, you need to know what is the framework, what are the rules, what are the responsibilities in being a substitute decision-maker.”

There’s a test to determine whether a person is capable of making decisions.

“The test has to do with ability,” says Dykeman. “It’s my ability to understand the information that’s being presented to me by the health-care practitioner and my ability to appreciate the reasonably foreseeable consequences.”

In Ontario, different types of decisions are governed by different acts. And just because someone is incapable of making one decision doesn't mean they’re incapable of making others, Dykeman says.

For example, there are different tests for capacity for admission to long-term care; for retaining legal counsel; for writing a power of attorney and for making personal care decisions.

Someone can’t be found incapable based solely on age or on a diagnosis of an illness.

“I could be 12 and be capable of consenting to a treatment (or) I could be 85,” Dykeman says. “It doesn’t depend on my diagnosis — I could have a diagnosis of Alzheimer’s disease, but that doesn't determine my capacity.”

To act as a substitute decision-maker for someone, you don’t have to be named in a power of attorney document, Dykeman says.

“If a medical professional insists that there has to be a power of attorney document, just remind them that under the Health Care Consent Act, s. 20, you’re the default decision-maker,” Dykeman says.

That section contains a ranked list of who can make decisions if you’re incapable. If the person at the top of the list won’t or can’t take the job, then it falls to the next person on the list. 

“Today, even if I don't have a power of attorney written, in Ontario that ranking gives me a default person — in my case that would be my husband,” Dykeman says. “If that’s you, you might say, ‘There’s no spouse, there are no kids — I’m the brother or the nephew or the highest ranked family member.'" 

A written power of attorney is important and there should be a copy in the health record, but doctors should not be using it to make decisions about treatment.

“They should be reaching out to you as the substitute decision-maker to interpret that wish,” says Dykeman.

And if you’re making the decisions for someone, it’s important that you know what their wishes are. If the wishes aren’t known, then you have to look at their values and beliefs.

“Maybe it was a conversation with your mom, maybe it was written down,” Dykeman says.

To be a substitute decision-maker, you have to be willing, available, capable, at least 16 years of age in most cases, and you can’t be prohibited by a court order or separation agreement.

“You can say, ‘Thank you for asking, but not at this time,’” Dykeman says. “And there will be someone else in the wings because there’s a hierarchy.”

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