The Coalition of Persons with Disabilities-Newfoundland and Labrador wants to help people make some difficult choices.
Tuesday it released a booklet that guides people through advance health-care directives (forms for which are also included in the booklet), urging people to make decisions about the level of health-care and treatment measures they’d want to receive should they ever be unable to communicate those wishes — and who will be allowed to speak for them in that situation.
Michelle Murdoch, the coalition’s president, said the information is to help people say what they want to happen to them, rather than letting others make those decisions for them.
“We should be telling the medical system what as individuals we want, not presuming that everybody wants the same thing,” Murdoch said after the coalition announced the information booklets at the Fluvarium on Tuesday.
Murdoch said people might find it difficult to discuss with loved ones what sort of treatment they’d want, but it’s a necessary conversation to have.
“We need to carry the conversations on, to get over that reluctance to talk about it,” she said.
Dr. Rick Singleton, regional director of pastoral care and ethics for Eastern Health, said it’s important to do it while people are still competent and able to make decisions about what they want to have done.
“The individual can give the direction for themselves, but it gives the direction for those who have to take on the burden of making the decision. And that’s a big burden when it’s a loved one,” he said. “Particularly when it’s the burden of having to decide about not continuing treatment.”
Often, said Singleton, a proxy decision-maker unsure of what his or her loved one would want will decide on more complicated and extensive treatments than they would want.
“Many people will request health services, heroic measures, for loved ones, that they wouldn’t request for themselves. Most of us have a sense of when we would see it as reasonable to discontinue (care). But it’s much more difficult to make that decision when it’s going to bring the end of life to a loved one, and it’s certainly much more difficult when there’s disagreement among family members about when and what that time is.”
Advance health-care directives allow people to ease the burden on family members who have to make those decisions, he said.
Advanced health-care directive forms are available online at the coalition’s website: www.codnl.ca.