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advance care planning: who is going to take care of you if something happens?
6 minute read
in canada, family or friend caregivers provide 70 to 80 per cent of care to people with a chronic health problem or disability.
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karine diedrich talks openly about death, grief and planning for care during our final days. as director of advance care planning for the canadian hospice palliative care association, it’s part of her job to normalize those topics people tend to shy away from. it may feel uncomfortable, but there’s a critical need to start having open conversations with your loved ones so they won’t be left hanging and uncertain.
“in society generally these are things we don’t talk about,” she says, aiming to create awareness around the services available for planning decisions for advance care planning day on april 16, 2025.
she explains that these decisions are not just important for aging seniors (and our aging population), but for every adult to be prepared in case of unexpected illness or injury. you need to have a framework for your expectations around your care and who you want making decisions for you about your life, health and care if you aren’t able to do this for yourself.
“covid shook us up,” she says of the death and disability that came with the pandemic. “you couldn’t avoid it and we realized ‘if i don’t think about this, what’s going to happen to me?’ if i want to go into a long-term care home, what does that look like for me? what does that cost? do i want to stay home? do i want to move in with my kids? do my kids want to help me out? do i want to have a nurse come in? there are all these questions. and we can actually start thinking about these things now. we don’t have to wait.”
‘planning is putting you in the driver’s seat’
there’s a growing recognition that all this makes a lot of sense, she says, adding a poll by her association found that a resounding 82 per cent of canadians agreed with the statement that there is a need for more acceptance around sickness, death and expressing health and personal care needs in our society. the same poll also revealed that while 77 per cent agree having an advanced care plan gives them a sense of relief that their wishes are understood, only 17 per cent have documented their wishes in an advanced care plan.
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diedrich says the time to take action is now: “planning is putting you in the driver’s seat to make sure you get the care that you want. if ever you’re not able to express yourself, it is something that benefits everybody involved because people will know what you want. it’s very stressful to make a decision for a loved one when you’re not sure,” she says. “don’t wait until there’s a crisis, like an unexpected accident or you’re at the end of your life because there’s a lot of emotions in those rooms.”
she also talks about the benefits to your doctor, nurses and the healthcare team who want to be guided by the patient’s values, preferences and wishes, but in many cases are surrounded by family members arguing over next steps.
advance care planning is about getting the care you really want
at the end of the day, advance care planning is about getting the care you want. one man who reached out to the association explained that he had been diagnosed with als, a nervous system disease that progressively reduces many body functions. he knew that some decisions would need to be made and he benefited from the illness trajectory information on the association website that outlines how specific conditions unfold to understand timelines, types of choices and conversations to pursue with healthcare providers and loved ones.
but it’s not only talking about death and disability that people tend to avoid, there’s also perceived barriers of cost that stops people from looking into making plans. diedrich explains that in many provinces designating a specific person to take charge of your affairs when you’re not able doesn’t require a lawyer and associated costs. it might be as simple as downloading a form and filling it out yourself, she says, adding her team is always there to help and works closely with provincial hospice palliative care associations across canada.
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“a lot of people don’t realize is you can choose who that person is. if you’re a single parent, for example, you don’t have to default to your children who are under 16-years-old, you need to choose a person you trust. if you are new to canada, who do you want to make those decisions for you? some of that can be really helpful to just think through,” she says.
and then tell people in your circle about it. “you can fill out that paperwork, but if you don’t have a conversation with the person you put down or people you put down, it’s not going to help them out.”
start with available resources to understand the process
so, the best place to start is advancecareplanning.ca, the national website that is free to use and download the advanced care planning guide. the guide walks you through questions and is offered in several versions for ease of use, including a mini-version and an online interactive version that uses images for accessibility.
they also have card games to help with discussion and make broaching specifics a little more playful. “so you’ve got cards and they might say humour, outdoors, pets, friends or music. and then you just decide if you’re going to put them on the not important, important or very important pile. it just starts those conversations around those values and wishes and beliefs because people are not sure where to start,” diedrich says.
she mentions the book being mortal by surgeon and author atul gawande, which includes the story of a daughter and father, where the daughter asked her dad what she should do if something happens to him and he needs life-changing surgery. the dad told her that as long as he can eat ice cream and watch football, he’ll be happy. something did happen to the dad and when the surgeon came out in the middle of the operation for a decision, the daughter asked him if the intervention would still allow him to eat ice cream and watch football, diedrich says: “and he goes, ‘oh, yeah, for sure,’ and she says, ‘ok, go for it.’”
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advance care planning is about what each person wants according to their culture, their beliefs and their preferences—which is why having those conversations is so important.
you have a conversation, you write something down and then review it once a year or when you mark big life milestones where circumstances could change, she adds about revisiting the guide documents. advance care planning is not “one and done,” so if you get married, divorced, have a baby or move, for example, start another conversation and review your plan.
option to consult a financial planner
she compares advance care planning to saving for retirement where you wouldn’t start at the last minute when you’re ready to retire (although that happens). many financial advisors are champions for advanced care planning because there is a financial impact, and that provides an entry point to those important conversations.
the association has also launched a new public education course called last aid to raise awareness about palliative care, death, dying, grief and bereavement. the aim is to boost skills and confidence. there’s a growing need for this kind of information and support. worldwide, 95 per cent of the time spent managing a life-limiting illness occurs with family, friends and the community, with only five per cent involving healthcare professionals, the association notes. in canada, family or friend caregivers provide 70 to 80 per cent of care to people with a chronic health problem or disability.
bottom line, diedrich urges, is to get started on your own plan. “it can be as simple as downloading our guide and reading it through on your own. you don’t even need to fill it out, just read it.”
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