Discussing end-of-life care with family invaluable, experts say

This piece was also featured in Waterloo Region Record

WATERLOO REGION — Death isn’t a typical topic of conversation at the dinner table for most families.

But in the event a person is nearing death and can no longer voice their wishes, their family is often left guessing what their loved one’s wishes would be.

Those trying to bypass the uncomfortable conversation with their families by having a living will are under the wrong assumption if they think the paperwork will guarantee their wishes.

“Really having the family members in agreement is the most important aspect, even more than having an advance care plan written,” said Nino Sekopet, client support manager for the national advocacy group Dying With Dignity.

“The problem here is nothing in the law says hospitals have to comply with an advance care plan document, only the power of attorney re-enforces it.”

In Ontario, if an individual is no longer capable of stating their wishes, a power of attorney for personal care is enacted to appoint a substitute decision-maker. The substitute decision-maker can be chosen in advance by the individual, or otherwise is determined by a hierarchy outlined in provincial law.

Health care professionals are encouraging people to choose, in advance, a substitute decision-maker who understands their desires for end-of-life care.

It may be an uncomfortable conversation for some, but it prevents conflict between spouses, children and extended family down the road.

“That’s usually when conflict happens, when people haven’t talked about it ahead of time and then it gets thrown at them when it’s so distressing and there’s a change in condition and they have to make a decision,” said Cathy Joy, a registered nurse and palliative pain and symptom management consultant in Waterloo Region.

While the conversation is key in advance care planning, having wishes written down does have its purpose. Documented advance directives — known also as a living will or advance care plan — can be a reference for families, friends and medical practitioners, reaffirming their decisions.

The directives should outline what type of medical intervention an individual does or does not want. That includes whether they want to receive artificial nutrition and hydration through feeding tubes and intravenous therapy if they are no longer able to eat.

Along with written advance directives, formal medical documents should be considered as well.

Documentation is particularly important for people who do not want to be resuscitated in the event their cardiovascular system stops. These individuals, who may know they have existing medical conditions and feel resuscitation is not in their best interest, should make their wishes clear to their family and their doctors, who can ensure the correct paperwork is completed.

“Without any documentation … emergency services must start life-saving activity,” said Andrea Martin, palliative care lead for Waterloo-Wellington.

That reason is why Martin said individuals who know they are nearing death, and particularly those who want to die at home, are encouraged to have a do-not-resuscitate form filled out in advance with their doctor.

For individuals suffering from degenerative or terminal diseases who wish to hasten their death, refusing food and hydration is a route many choose to take even if their bodies can still ingest food normally, Sekopet said.

It’s an option the medical community is obligated to respect.

“We have to understand and respect what our patients want or need,” Martin said.

“We as professionals would have to strongly document that, that we have explained the pros and cons of that choice … and work with that patient, their family and their substitute decision-maker on making that individual as comfortable as possible,” she added.

Because the circumstances of any person’s death cannot be predicted, end-of-life care advocates stress that sharing wishes with family regularly is the best way for them to make appropriate decisions.

“Even if some unpredictable scenario unravels, they can conclude or they can feel what would you do if you were able to advocate for yourself,” Sekopet said.

Those looking to start the conversation can find an advance care planning outline, designed for Ontario residents, at www.advancecareplanning.ca.

Legal options

| Power of attorney for personal care: A legal document giving someone else the right to act on your behalf regarding personal decisions such as housing and health care. A power of attorney can be drafted by a lawyer or forms can be obtained online, through some bookstores or by contacting the Office of the Public Guardian and Trustee under Ontario’s Ministry of the Attorney General.

| Living will or advance directive: A document outlining what you want to happen if you become ill and cannot communicate your wishes. It is not a legal document.

| Substitute decision maker: A person appointed or chosen in advance through a power of attorney who will make decisions on your behalf when you are not able to. This person can ensure your advance directives are acted out.

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Linda Givetash

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Linda Givetash is a Canadian-South African freelance journalist based in Vancouver, B.C. Her work has appeared in print, digital and broadcast media outlets around the globe.