Imagine: A serious car accident. A stroke. A nasty fall down the stairs. A life threatening diagnosis. You can’t communicate. We hear about these incidents every day. What if they happened to you, or to someone you love?
It’s hard to imagine or to think about ourselves or loved ones being seriously ill or unable to speak, and yet, every day, hundreds of Canadians find themselves in this situation. If it happened to you, are you prepared? Have you made a plan and shared it with those who could speak on your behalf?
A Substitute Decision Maker (SDM) is someone who has been named to make medical decisions and provide consent for treatment/interventions or refusal of treatment/interventions on behalf of another person when they are incapable of communicating their wishes on their own. Depending on the laws of your province, this person might also be known as a medical proxy, a health representative or agent or a Power of Attorney for Personal Care.
For some, naming a Substitute Decision Maker might seem like an easy, obvious choice- for example you automatically think of a spouse, a sibling or an adult child. For others, it may not be so obvious or easy. You need to ask yourself who can make the best medical decisions for you when you are no longer able to do so during such a difficult time.
Here are some questions you may want to ask yourself when choosing someone to speak up for you if you can’t speak for yourself:
Who do I feel comfortable talking to?
Look for someone you trust who engages in your conversations and ask for clarifications, someone who will actively listen and isn’t afraid to hear what you consider makes life meaningful for you and what circumstances might make life less meaningful when you are faced with a serious medical situation.
Who would respect and follow my wishes?
It’s important to name someone you respect and in turn respects your values and views and will follow through on your wishes, even if they may not share all of them.
Who would be comfortable speaking up for me?
Think about, speak with and ask a person who you feel would most likely be your dedicated advocate with your family members and health care professionals, even in such a stressful situation, and in the event that others would disagree with your/their decisions.
Who is physically/emotionally capable of speaking up for me?
A spouse, sibling or adult child may be a natural choice for some, however it’s important to consider whether they will be physically or emotionally able to speak on your behalf, perhaps while under great stress.
So let’s say you have been proactive and have learned about current medical treatments/interventions and their implications. You have thought about the care that would honor your values and beliefs. The next most important thing you can do is to have a conversation with your chosen Substitute Decision Maker, so that he or she can make decisions on your behalf and in accordance with your wishes, rather than having to guess what you’d want when often fast medical decisions may have to be made in an emotionally charged environment.
You should also consider writing these wishes down and sharing them with those close to you, your doctor and other health care professionals. If you wish, you can check to see if there is a document in your province or health authority that supports this e.g. sometimes called advance health care plan/directive or by another name. Ongoing conversations and regularly revisiting and reviewing your wishes and decisions with your SDM will make sure you are both still comfortable with your wishes and plan.
Research has shown that advance care planning significantly reduces stress, depression and anxiety in family members and caregivers who know your wishes and can act with confidence on your behalf. Take the time to name and have that important conversation with your Substitute Decision Maker, to give you and them the confidence to make the right decisions for you.
Laurie Anne O’Brien well known to many as a palliative care “pioneer”, assisting in forming palliative care in her home province of Newfoundland and Labrador starting in 1979, is a palliative nurse consultant, educator and advocate who has been actively involved in various palliative care work for over 32 years, is a member of the ACP Task Group and incoming president of CHPCA.
Note: Remember, legal requirements regarding the appointment of a Substitute Decision Maker vary across the country. Consult our list of provincial/ territorial resource links for more information