Families should plan for end-of-life care
Troy Media – by Laura Wershler
Over a year ago, when my elderly mother experienced a week-long delirium brought on by an infection, I was panicked into action. After her delirium subsided, but before she’d left the hospital where she was treated, she signed Power of Attorney and Personal Directive documents naming me and one of my brothers as agents who can make financial and personal decisions for her in the event she becomes incapacitated.
This panic scenario might have been avoided if I’d known more about advance care planning. Today, April 16, is National Advance Care Planning Day, the aim of which is to help Canadians avoid the harsh wake-up call my family received.
Talking about end-of-life care
As part of the Speak Up Campaign to talk about end-of-life decisions, National Advance Care Planning Day is designated as a day to start conversations with loved ones about our wishes for end-of-life care. Events will be taking place across the country to build awareness of the importance of advance care planning.
According to a March 2012 Ipsos-Reid poll, this awareness is badly needed. It seems Canadians aren’t doing much to communicate with loved ones about their personal care preferences in the event that they can no longer make decisions for themselves. Of those polled, 86 per cent had not even heard of advance care planning. Over 80 per cent of Canadians do not have a written plan and only 46 per cent have designated a Substitute Decision Maker.
Those polled in the Fraser Health region in British Columbia, where there has been a formalized advance care planning program since 2005, were more likely than those from other parts of the country to have heard of advance care planning and to have talked about health-care related decisions with family, friends and healthcare providers.
Good for them, because research published by BMJ in March 2010, found that “advance care planning improves end-of-life care and patient and family satisfaction, and reduces stress, anxiety and depression in surviving relatives.”
Today, first-year results from a Canadian multi-year study examining how advance care planning impacts elderly patients and their families will be presented in Calgary. In face-to-face interviews, the ACCEPT study asked 283 hospitalized patients with advanced illness and 229 family members about their pre-admittance advance care planning and in-hospital end-of-life communication and decision-making.
Principle investigator Dr. Daren Heyland says, “One would think that the patients in our study, most with about six months to live, would be more engaged in advance care planning. But only about 20 per cent had been informed by their doctors about their prognosis, and 44 per cent weren’t actually sure what the goals were for their current treatment.”
I suspect many of us learn about advance care planning, as I did, through the process of caring for an elderly parent. But elderly people and the seriously ill are not the only ones who should be doing it. An accident or unforeseen illness could impact any of us at any time. As I learned on the Speak Up Campaign website: “If you are an adult, you should have a plan.”
Advance care planning is about taking time to reflect and talk about my wishes and values about end-of-life concerns, not just regarding medical issues, but in other areas that matter to me. I’ve realized that not only should my husband and I have a written plan, but so should our son. In his late 20s, he recently travelled in South America and Southeast Asia for a year. What if something had happened to him while he was thousands of miles from home? Or what if something happens to him much closer to home?
Make a plan
Although legislation for designating substitute decision makers varies in different jurisdictions, the basics of advance care planning are the same for everyone: Determine who will make medical decisions on your behalf should you become incapable of doing so and talk with them about your wishes for end-of-life care. Then make a written plan and review it regularly.
The Speak Up Campaign was developed by the National Advance Care Planning Task Group. The website provides information for individuals, community organizations and professionals including tips and videos on how to help people start the difficult conversation about end-of-life decisions. It also includes links to provincial and territorial legislation.
A few months after my mother, now 93, appointed me as one of her substitute decision-makers, she ended up in hospital again with a month-long delirium brought on by withdrawal from a medication. I was grateful we had the Personal Directive in place. My mother recovered, and the directive has yet to be invoked, but knowing it’s there, and that we’ve talked about her end-of-life preferences to ensure her wishes will be honoured, is a huge relief.
Troy Media Columnist Laura Wershler is a women’s health critic and veteran sexual and reproductive health advocate. She blogs regularly at re: Cycling (www.menstruationresearch.org/blog ).