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why end-of-life care needs a plan
4 minute read
it’s not the most uplifting topic for a heart-to-heart talk, but making plans and talking about your wishes now will reduce the stress and emotional turmoil that comes with situations where there's pain, disability and death.
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“death isn’t something that we should avoid talking about. it’s a part of life. it’s something that everybody’s going to experience,” says kelsey goforth, director of programs at dying with dignity canada. it’s a key message that underlies the work she does to help people feel comfortable making important end-of-life decisions and discussing them with loved ones.
“we’re all going to go through it ourselves. we’re all going to experience the death of people that we love. so i always felt that it should be something that we discuss as part of our life. and then the other part of it is related to bodily autonomy and really believing in people’s rights to choose what their deaths look like.”
it’s not the most uplifting topic for a heart-to-heart talk, but making plans and talking about your wishes now will reduce the stress and emotional turmoil that comes with situations where there’s pain, disability and death. having plans in place and written down can ease the distress of loved ones.
“at the end of the day, we are talking about end of life. we’re talking about grief,” goforth says. “we’re talking about a time when somebody might lose capacity and might not regain it and might end up dying. and there’s a lot of emotion that comes with that, too. but i think the whole point of advanced care planning and why it’s so important is we want to make that future situation a little less difficult.”
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not only are people dealing with grief, but they may also be trying to navigate the health-care system, looking at placement in a care home or palliative care, depending on the circumstances.
the reality is that people are living longer but not necessarily living well. according to statistics canada, in 2023, canadians had an estimated number of healthy years of 66.9, a decline of nearly two years from 2019 and 2020, despite the fact that life expectancy is increasing. life expectancy for women was 84 years, compared with 79.6 years for men, with women experiencing 67.7 years in good health and men experiencing 66.4 years. while we’re living longer, a growing number of those years will be spent with health limitations.
dying with dignity canada advocates for medical assistance in dying (maid) so that individuals can have the choice to die when their quality of life has diminished. maid is only available for people people suffering from serious and incurable illnesses, disease, or disability, provided they meet all safeguards required by law.
the organization also has free resources, including videos and downloadable kits for advanced care planning, last updated in 2024. the kit offers a guide to walk you through medical decisions and treatments, and what you may want or not want, which is critical when you can’t speak for yourself.
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the kit includes explanations of all the components that a person needs to think about, along with different scenarios to consider.
“it gives people the tools to write down and document what those thoughts, plans and directions are. and it also gives some tips and prompts and things like that so that you have a bit more direction when you’re sharing those wishes and beliefs with your substitute decision maker, your loved ones, your health-care team and anybody else you want to have those conversations with,” she notes.
what do you need to reflect on? goforth talks about what you enjoy doing or prioritize in your life, like social activities, making art or spending time in nature. as well, what do those things represent? physical health, independence, autonomy.
“so having people really think about these bigger values and belief-based pieces and what does my day look like? what do i want my life to look like? and then we get into the medical scenarios, looking at treatments that are available, so antibiotic use, tube feeding, palliative care, but also looking at the medical situations where a person may want those things or might not want those things.”
there is also an advanced directive available to download, which is a document specific to each province and territory. this is a signed and witnessed document that outlines what you want for future health care and who you would want to make those decisions for you if you can’t speak for yourself. there are wallet cards to let people know you have documents completed and where to find them, which is helpful for paramedics and other health-care providers.
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while advanced care planning in this vein is not outlining finances or powers of attorney, the planning is invaluable for loved ones and your care team. another key point is that the documents should be revisited from time to time, goforth says.
“this is something that is a bit of a lifelong exercise. things are going to change over the years. people are going to have new medical conditions. they’re going to have different levels of frailty as they age and as diseases or illnesses progress. so, it’s important that this is something that people look at and potentially revise if needed. and people might also have changes in their family structure and might assign a different substitute decision maker at different points in their life.”
as well, she says people can sit down and hash it all out in an afternoon or start the kit and give themselves time to think about things and come back to it. bottom line is you’ll be glad you did.
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