The Personal Health Navigator is available to all Canadian patients. Questions about your doctor, hospital or how to navigate the health care system can be sent to AskPaul@Sunnybrook.ca
The question: I have been following the news about the Supreme Court of Canada’s ruling involving Hassan Rasouli, the patient who has been on life support for three years. The case has made me think that I should create some instructions about my medical treatment if I am ever in a situation in which I am unconscious. I’ve heard of living wills. Is this my best option?
The answer: A living will is basically a written document outlining your wishes for your medical care if you are unable to speak on your own behalf.
For instance, if you’re living with an incurable illness — or even if you’re perfectly healthy but want to be prepared for the unexpected — you might state you don’t want to be put on feeding tubes or mechanical breathing that could prolong your life.
While it can be helpful to write down your wishes, medical professionals who specialize in end-of-life care say it’s far more important to select someone who can make decisions on your behalf if you cannot; and to have conversations with this person about what is important to you. This process is called “advance care planning.” It also involves communicating with other key loved ones and your health-care providers.
Why, you might wonder, do you need to engage in these conversations if you have a living will?
A major reason is that you can’t possibly anticipate all the various things that might happen to you, explains Dr. Jeff Myers, head of the Palliative Care Consult Team at the Odette Cancer Centre of Sunnybrook Health Sciences Centre.
As a result, a living will may be either too vague or too rigid to provide meaningful direction for an evolving medical condition. And this is true of any written document expressing wishes or preferences for future care.
It’s also important to know that the legislation governing these documents, sometimes called advance directives, varies from province to province. Depending upon where you live in Canada, your caregivers may not be legally bound by your written instructions.
However, if your loved ones and health-care professionals know your values and wishes, they can make difficult decisions accordingly.
Advance care planning “gets people to think about the things that bring meaning to their life,” explains Dr. Myers. “What do you believe in? What do you value? What do you worry about? This exchange begins to shape a person’s goals for medical care.”
Dr. Myers points out that various studies have found people aren’t very good at guessing what others may want – even when it involves a very close relative.
One person may want to live long enough to see a grandchild graduate from university. Someone else may value physical independence above all else. And yet another may have a strong desire to die at home.
Dr. Myers adds that a person’s wishes for their medical care can change or evolve. “As an example, a young individual may consider dialysis to be a worthwhile life-extending treatment, whereas an older person with a number of medical conditions may consider dialysis to be overwhelming and something not worth pursuing,” he explains.
“That’s why it is a conversation that needs to take place over a period of time.”
The Canadian Hospice Palliative Care Association has launched Speak Up, a national campaign to increase public awareness about end-of-life advance care planning.
You may want to check out the campaign’s website, advancecareplanning.ca It contains resources and a workbook to help frame your discussions.
The legal process for selecting a surrogate, or substitute decision-maker, varies across Canada. The website includes an overview of these jurisdictional differences.
Of course, it’s critically important to pick a surrogate whom you can trust to abide by your wishes, says Louise Hanvey, a nurse and project manager for Advance Care Planning in Canada. “They have to understand that these are your wishes … even though they may not fully agree with them.”
Going through advance care planning eases the emotional burden on families at those times when a loved one can’t communicate. It eliminates second-guessing, and the potential tensions that can arise within a family faced with such decisions.
“The research shows that when people have had these conversations, they have a better quality of death, their families are less stressed, and the grief process is usually better following death for the family members,” says Ms. Hanvey.
With this background in mind, let’s return to your question about living wills. You may still feel a need to write down your wishes. But Dr. Shelly Dev, a Sunnybrook critical-care physician who has witnessed many families in the throes of making decisions for an incapacitated relative, says having a conversation beforehand is what matters the most.
“They need to hear it from you,” says Dr. Dev. “A piece of paper is very abstract.”
Paul Taylor is Sunnybrook’s Patient Navigation Advisor. His column Personal Health Navigator provides advice and answers questions from patients and their families, relying heavily on medical and health experts. His blog is reprinted on healthydebate.ca with the kind permission of Sunnybrook Health Sciences Centre. Email your questions to AskPaul@sunnybrook.ca
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Albertans can access information on personal directives and forms (http://humanservices.alberta.ca/guardianship-trusteeship/planning-ahead.html). The personal directive can be registered online so healthcare providers can check to see if you have one and then contact your agent (the content of the directive itself is not available).
%featured%As a family, we have found this helpful for advance planning, although it is not entirely smooth yet within the province’s healthcare system. We experienced a situation where a personal directive did not travel with a person at end of life from one hospital to another and we were unaware of this for several days.%featured%
Thank you, Allan K, for your thoughtful question.
Your assumption is correct — the target is “you” the reader. I also think the comment you make is correct — most people don’t want to think about their own death.
But if we are unwilling to help ourselves, maybe we can at least help others. For instance, maybe the Speak Up campaign will prompt some people to start a conversation with their elderly parents about end of life care. That way the offspring will be prepared when the time comes. That would be a good thing.
That said — you could do yourself a favour and start the conversation for your own care.
Paul Taylor
Good article. But one question that is floating around my mind while I read it and the Speak Up website is not the what, when, why, or how, but the who. Who should have the end-of-life conversations? Who should choose a substitute decision maker? Who should make an advance care plan?
I think the answer is “You” (i.e., the reader, at least this is what this article and the Speak Up website imply); however, I sense that most people think that talking about end-of-life means it is going to happen tomorrow or next week. Naturally, people may think, “This business is for another reader, not me – I’m only 24 and don’t have a terminal illness,” and put it off. So the question remains, but let me rephrase it: Who is this article and the Speak Up website directed to? Who is the target audience? Chronically ill people only? People with terminal illness?
On White Coat Black Art, I heard Dr. Goldman say that anyone over the age of 80 with an acute medical or surgical condition and any person over the age of 55 with one of the five most serious diseases and the stage of that disease is serious should have the the end-of-life conversation. He also implied that the BEST time to have this conversation is when people are well and made reference to the 40/70 conversation, that is, the adult children are in their 40’s and the parents are in their 70’s. It is the 70 year old parents that are having the discussion with their 40 year old child(ren) who will be their decision maker(s).
Thoughts?