Dr. Smith wants to go over his medication and to check how he’s feeling these days. It is quite possible that Joe will soon be in hospital, perhaps even using a breathing machine. She would like to ask about the type of care Joe wants to receive if his treatment doesn’t work. This information could make a huge difference in the quality of care he receives if he does enter hospital, and to his end-of-life experience.
However, Dr. Smith is not sure how to have that conversation without frightening him, and so she says nothing.
Research shows that Dr. Smith is not alone. Numerous studies indicate that health professionals don’t feel comfortable having these conversations. However, 86 per cent of Canadians are interested in discussing their wishes with their family doctors. Most want to have that conversation when they are healthy.
This process allows those who are ill to reflect on their wishes for future health and personal care. It should include conversations with others. Advance care planning also involves choosing a Substitute Decision Maker. If you become unable to speak for yourself, this friend or family member would speak and make decisions on your behalf.
While talking about death isn’t easy, it is very important. Canadians who are seriously ill, and those who love them, need to have this type of chat with their doctors. So why isn’t it happening?
A recent study suggests that family physicians feel very limited by time. Regular check-ups are becoming less standard. Instead, family doctors only see patients about specific issues and plan their schedules accordingly. Another issue is that health professionals need more resources and information to prepare for these discussions.
A new research project aims to improve advance care planning conversations between family doctors, nurse practitioners and their patients. The Improving Advance Care Planning in Primary Care (i-GAP) study is working with family practices across Canada to better understand why these conversations aren’t happening, and testing tools to make the process easier.
Dr. Carrie Bernard, a family physician and founding researcher for the study, knows firsthand the struggle that many patients and their families experience.
“Too often I’ve had to support patients who were, for example, in conflict with siblings over the care of an aging parent,” Dr. Bernard says. “I knew the importance of advance care planning, but I was struggling to make it work in my practice. I wanted to find out why patients weren’t following up after being provided with information materials related to advance care planning.”
Researchers for i-GAP have surveyed family doctors and nurse practitioners in Ontario, Alberta and British Columbia. A number of different advance care planning aids, such as workbooks and websites, are being tested in family health practices in those provinces.
Those who are seriously ill and their doctors both have questions about how to approach this type of conversation. The Advance Care Planning in Canada Initiative has created a toolkit including posters, handouts, videos and a Just Ask conversation guide. Two sets of questions are included – one that doctors can ask patients and another for patients themselves.
The suggested questions in the Just Ask card are straightforward and open the door to reflection and discussion. All of the questions on the card can be asked, or a few chosen as time permits. Questions for doctors revolve around several key topics – such as whether patients clearly understand the illness, or feel they have enough information about their illness and treatments to make decisions about care.
A critical question about advance care planning involves who will speak and decide for you if that becomes necessary. The choice of a Substitute Decision Maker is not always as easy to answer as one might think. Your spouse might seem like a natural choice. However, if your spouse is unwell or emotionally challenged by the illness, you might make a different choice. You may need to choose between several adult children, or your siblings. Clearly identify that person, and have a conversation about what the role will involve. Making this decision in advance helps give the information and confidence your Substitute Decision Maker will need to act, if that step becomes necessary.
April 16th is National Advance Care Planning Day. This is an excellent time to reflect on your wishes and share them with others – especially your Substitute Decision Maker.
Visit advancecareplanning.ca for more information on National Advance Care Planning events taking place across the country.
Visit myspeakupplan.ca to access online resources for advance care planning.
Another tool you can access is an interactive workbook, available online at ⊇myspeakupplan.ca. It uses five steps to help you learn more about advance care planning, reflect on your beliefs, and communicate your wishes to others. The workbook includes a Frequently Asked Questions section, and explanations of medical terms and treatments. Conversation starters and videos can also assist those needing help to communicate their wishes to others.
Once the workbook is complete, it can be downloaded or e-mailed as a document that can be shared with others.
The next time Joe comes to see Dr. Smith; she makes time for a short discussion with him about his wishes for care. She uses the Just Ask questions to learn about his understanding of certain medical treatments, and whether he’s thought about who might speak for him if he couldn’t speak for himself. The conversation is difficult at first and Joe is reluctant to talk. Dr. Smith gives him a website link and a workbook that he can look over with his family. She also explains that they can talk again at the next visit, once he’s had a chance to consider.
Dr. Smith makes a note in Joe’s chart to keep the conversation going, and to learn as much as she can about his wishes to ensure that she provides him with the best care possible.