Guessing what you want vs. knowing your real wishes: New urgency for advance care planning in pandemic
Pick a substiute decision maker and share what you believe is acceptable quality of life says Dr. Kevin Miller
Advance care planning (ACP) has taken on special significance as people across the country deal with the reality of the COVID-19 pandemic, said Dr. Kevin Miller, a palliative care physician at the Thunder Bay Regional Health Sciences Centre.
ACP is about preparing for future health care decisions by determining who should speak on your behalf if you can't, and by giving your loved ones directions about "what is most important to you" in order to save them from being stuck in that space between guessing what you might want, and knowing your real wishes
He likens it to buying travel insurance before heading out on that dream holiday.
"We hope that nothing's going to happen on the trip and you won't need it, but in this case we're looking at a pandemic where there's a significant risk of us becoming infected and becoming ill,' he said. "It's essential for us to have the conversation to make sure things are done the way we would want them to be done."
Discussing these issues now is critical said Miller because the very nature of the coronavirus and the way it attacks the respiratory system means many patients with COVID-19 end up on a ventilator.
Share 'what's important to you'
"If one of these machines is breathing for you, you can't speak. so it's important that we've had these discussions with the person who is designated to make decisions for you so that our loved ones don't have to struggle with understanding what you might want and rather can speak from what you've discussed about what's important to you."
Miller noted that during this pandemic we need to be prepared for which emergency personnel could be called, whether it's doctors, nurses or emergency medical services (EMS).
As well, there is always the possibility of limited resources, which could mean full medical treatments will not be available to everyone.
Where do you want to be when you die?
It's a situation that presents some gutwrenching choices, said Miller.
"As hard as it may be, if you are not able to recover from an illness, or not able to access life prolonging treatments, where do you want to be at the time of your death? Alone in a hospital, with caring staff of course, but very busy staff, or at home? If you were at home, who can care for you? How will those people protect themselves from getting sick too?"
Miller said discussions around ACP should focus less on specifics – having a stroke versus being injured in an automobile accident or contracting COVID-19 – and more on the general question of what you consider quality of life.
What is acceptable quality of life?
"If I had a medical condition that made me unable to work, or if it made me unable to speak, if it meant I wasn't able to be independent. So thinking about what is most important to us about our lives and our living," he said. "It's more about what is acceptable to us in the quality and the ability to live our lives."
By law in Ontario, everyone has a designated substitute decision maker (SDM), whether it's a spouse, parent, adult child or other family member or a public guardian if none of those people can be found, said Miller. It is also possible to designate Power of Attorney for personal care, and that person speaks on your behalf, if you can not. Their authority would supercede that of other family members.
Resources to help start the discussion around ACP can be found at the Hospice Palliative Care Ontario (HCPO) site Speak Up Ontario.
The organization is urging people in the province to confirm their SDM and share their three values via social media on Thursday April 16, which is Advance Care Planning Day across Canada.
You can listen to the full interview with Dr. Kevin Miller on CBC Superior Morning here.