Who would make your health-care decisions if you couldn’t?
This article was written by a guest contributor, and the views, thoughts and opinions expressed in this article belong solely to the author.
If you are unable to make your own health-care decisions when treatments are offered, health-care providers seek to discuss your situation with someone close to you. They would talk about your current health, the risks and benefits of treatments and potential complications, and would want to know your values and goals to ensure decisions made align with who you are.
The person (or persons) who consents to proposed treatments are called substitute decision makers. You may have heard other terms such as proxy, attorney for personal care, representative, delegate, agent, and temporary or specific decision maker. Legal terminology, qualifications and requirements vary across Canada.
A substitute decision maker's role is to be your voice and make decisions you would make for yourself. The Advance Care Planning process helps to ensure your substitute decision maker is well prepared and supported for this role.
TIP: It is important that you become familiar with legal requirements for appointing substitute decision maker/s, including what qualifications are required. Each province and territory has a default list. Who is on the list and its order depends on where you live.
*See Living Well, Planning Well in our resource section below for a summary of provincial and territorial legal requirements.
When should I consider choosing a substitute decision maker?
Some of us put off thinking about and choosing a substitute decision maker. We may say or think things like:
I’m too busy.
It’s bad luck.
I’m too young.
TIP: Watch Famous Last Words: The Excuses in our resource section below.
Most of us, however, will need someone to help us or to make our health-care decisions at some point in our life. We may be unable to make decisions for a few hours, days or weeks. Others may need help for longer.
Three Canadians share their stories to illustrate the importance of thinking about and choosing a substitute decision maker before a health crisis. The first and third stories are written in their words:
Story 1: An unexpected responsibility
Last summer, a friend fell down a 100-foot waterfall. He was 21 at the time. I was 24. We all thought he was seriously injured. Some of us scrambled to get to him while others ran to get cell service and call 911. After a rescue effort and an air ambulance trip to the nearest trauma hospital, my friend had only a broken arm. But that afternoon and night, we thought he might have internal bleeding and a head injury and we really didn’t know what was going to happen. In the middle of the emergency department, my friend asked me to make his health-care decisions if he couldn’t. I said yes — but I really didn’t know what that might mean.
Photo courtesy of Getty Images.
I was very glad that he never lost consciousness and was able to communicate with everyone. But I did have to talk with doctors and nurses, help make plans for where he would stay after his surgery and understand the kind of help he would need at home. I didn’t make any health-care decisions for him, but I did need to help make plans. He could talk, but he didn’t always understand what they were saying to him. None of my friends had ever been through something like this, so we all talked a lot to support our friend and each other.
I had two distinct feelings [when asked to be the substitute decision maker]: One, surprise that out of everyone in his life I was seen as the person to be making big decisions regarding his medical well-being. Two, that he didn’t choose his parents.
[Later] my friend said his choice had nothing to do with not loving his parents. It did, however, have to do with my ability to remain calm and logical in crises.
Story 2: How do I choose a substitute decision maker?
Andrew Saunderson works in Advance Care Planning at Fraser Health Authority in British Columbia supporting the implementation into routine practice. He has facilitated hundreds of Advance Care Planning sessions and talks with health-care providers and the public about the importance of choosing substitute decision maker/s.
Photo courtesy of Getty Images.
“Choosing a substitute decision maker is not a love competition," said Saunderson. “Rather than the relationship or closeness to the person [being the deciding factor], it’s far more important to prioritize the qualities and characteristics of a good substitute decision maker.”
But what makes a good substitute decision maker? Other people have told Saunderson that they want their person to be "good in a crisis, a clear communicator, an advocate, aware of [their] values and accessible," he said. “There’s often a sense of relief … that it doesn’t have to be someone who lives the closest, is the oldest or even knows their health the best."
Once you choose a substitute decision maker, he said, "Others who matter most to you [should still be] aware of your values and preferences to help mitigate potential conflict and also to increase support for the substitute decision maker in the decision-making moment.”
Based on his experience in Advance Care Planning and as a social worker, he offered this advice:
“Remember that once you have formally chosen a substitute decision maker, that is not the end of the process, but actually just the beginning.”
TIP: See videos in our resource section: How to Decide on a Substitute Decision Maker and Talking to My Community.
ACP Canada's tips for choosing a decision maker
ACP Canada offers these questions to help you choose a good health-care decision maker if you become unable:
Will this person serve your best interests when you are unable to make decisions for yourself?
Is the person a capable adult (18 or 19 years old, depending on the province)?
Do you trust this person to make decisions regarding your life, comfort and well-being?
Are you comfortable talking to this person about sensitive and difficult issues?
Will this person understand your wishes and be willing to make difficult decisions on your behalf?
Can this person handle differing opinions of family members and health-care professionals and come to a decision that reflects your wishes and discussions?
Is this person available and able to make the time commitment that may be required?
Will this person collaborate well with your Power of Attorney? *Your substitute decision maker will make your health and personal care decisions but your attorney may be called upon to exercise their powers to fund them.
Story 3: How can I be substitute decision maker?
My mum had a major health event in her mid-60s. Until then, she was healthy and active. At the time, my two brothers and I talked together regularly and made decisions based on what we thought she might want us to do. Did we know for sure? No. But we did the best we could, given the situation. She recovered, which we were so thankful for.
Photo courtesy of Canva.
It wasn’t until about four years later that mum said we were going to the lawyers and she wanted me be the person to make her health-care decisions in the future if she could not. She was diagnosed with dementia shortly after this, and in the years that followed I had to decide many things — where she lived, when to start and stop different medical treatments, what pills she needed [and] when she received palliative and comfort care. Did I include my brothers? Yes, I did. But it wasn’t always easy. Sometimes I felt like the go-between — between the doctors and my brothers. But I kept thinking, "What would mum want?"
Here is some advice for others:
Talk more to your family and friends about what matters and what health-care decisions you might make, when and why.
Nudge your family and friends to tell everyone in the family about the decisions you’ve made so everyone knows and can support each other.
ACP Canada's tips for decision makers
ACP Canada offers the following questions to ask yourself if you become someone’s substitute decision maker:
Do I understand what’s important to my loved one? Do I know their health and personal care wishes?
Am I willing to communicate those wishes, even if they aren’t what I would choose?
Am I able to communicate clearly with health-care professionals and ask questions?
Can I make difficult decisions, even during stressful times?
Do I know what the legal requirements are in my province/territory?
Make Advance Care Planning part of life planning
For many of us, planning is a part of daily life. We plan what to do with our days, be it taking a walk outside, dancing, watching a show, attending ceremonies, sharing knowledge or practicing our faith.
We also plan for our finances and our estate — let's not forget to plan for our healthcare, too.
Life Planning Model
Image credit: Sandy Abley, JD, CFP, TEP, Money Coach and Consultant, www.thewealthdoc.ca. As published in the Advance Care Planning Pan-Canadian Framework, 2020, Canadian Hospice Palliative Care Association (CHPCA).
*Stay tuned for the next Advance Care Planning article: How is my planning helpful to “in the moment” decision-making?
Over the last two decades, Cari Borenko, BA BSW, MHS, has contributed to the Advance Care Planning (ACP) movements in Canada, New Zealand, Singapore and Japan. Presenting at conferences sponsored by ACP-international, Singapore Ministry of Health and Agency for Integrated Care, Health Quality and Safety Commission New Zealand and ACP Canada, has provided Borenko the opportunity to share her experiences and learn about international initiatives.
In her roles as ACP Lead Manager at Fraser Health Authority in British Columbia, founder and chair of the Canadian National ACP Community of Practice of Educators and an appointed member of the National ACP Task Group, Borenko has championed the development, implementation, delivery and evaluation of ACP policies, systemic processes, educational resources and promotional materials for Canadians. She is proud to be leading a trailblazing six-member ACP team with a focus on systems level implementation.