Canadians are likely to have many important conversations with their loved ones over the holidays, but probably most won’t talk about what should happen in the event they could no longer speak or make medical decisions for themselves. It’s what’s called Advance Care Planning, and while experts say most of us should do this well before our senior years, too few Canadians bother until it is too late.
One study found that a surprising 70 percent of individuals nearing end of life were not able to make decisions for themselves. Yet the results of a recent opinion poll found that only 52 percent of Canadian adults had discussed Advance Care Planning with family or friends, and only a mere 10 percent had discussed the topic with their health care provider.
Why are these conversations so important? Studies have shown that people who have end-of-life conversations with their doctors and family members are much more likely to be satisfied with their care, and their caregivers are less likely to suffer from depression, or left wondering if they made the right decisions for their loved ones.
Advance Care Planning involves reflection and communication on your values and wishes, and lets the people around you know what kind of health and personal care you would want if you were not able to make those decisions. It means having honest discussions with family and friends, especially your selected “substitute decision maker.”
Your substitute decision maker is the person(s) who will make medical decisions for you if you are unable to do so; make sure it is someone you trust to make health care decisions that reflect your wishes. So how do you choose the right person?
Your substitute decision maker should be someone who could communicate effectively and clearly with your health team. Ask yourself, could they make difficult decisions during stressful times? Are they willing and available to speak for me if I cannot speak for myself? Legal requirements regarding the appointment of a substitute decision maker vary across the country and some provinces require you to complete certain legal forms.
When advance care planning has been done, the families of people who died in hospital were more than twice as likely to say that their loved one’s wishes were known and followed, and the family members were significantly less likely to suffer from depression several months later.
Ideally advance care planning happens before a person ends up in hospital. Why? Because research has found that conversations with doctors about the care goals and wishes of seriously ill patients near end of life typically don’t happen in Canadian hospitals.
Along with my colleagues, I’m undertaking new research to try and get more Canadians talking to their healthcare team and their families about advance care planning, especially with their primary care providers. The Improving Advance Care Planning in General Practice (i-GAP) research project, funded by governments and University partners, is now taking place in family doctor offices across Alberta, British Columbia and Ontario.
Initial research surveys and interviews with patients and healthcare professionals already indicate why it is so difficult to have end-of-life conversations.
Around 60 percent of Canadians want their healthcare provider to give them information on advance care planning, but only 26 percent of primary care physicians feel comfortable doing so, according to previous studies. Most doctors it turns out – around 67 percent — say they need more resources and information to have these discussions with their patients.
With this in mind, the i-GAP study is evaluating and sharing several tools to help individuals, families and health care professionals have the important discussions. One tool being evaluated is an online workbook – myspeakupplan.ca – that features resources, videos and conversation starters to help families think about and talk about their wishes. People can record their values, objectives and name their substitute decision maker – then download and share with others. Other tools will also be targeted at primary care providers.
Many patients in our i-Gap study indicated that they were planning to talk about their advanced care plans with family members over the holidays. Maybe it’s time we all made time for this conversation?
Michelle Howard is an Assistant Professor, Department of Family Medicine at McMaster University and the lead investigator for the iGAP study, funded by the Technology Evaluation in the Elderly Network (TVN), a national non-for-profit network. She is also an advisor with EvidenceNetwork.ca.