From Fraser Health. Steve isn’t sure how his family is going to take this news. His kidney disease is beginning to progress, and his doctor is preparing him for the possibility of dialysis. Steve is 43 and married with two young kids. Since being diagnosed five years ago, Steve has worked hard to improve his diet and exercise regime, in the hopes of avoiding what seems to be a family legacy – almost all the men have suffered from kidney disease and have needed dialysis. It doesn’t look like he will be any different.
He knows he needs to talk to his family about his future health care needs, but he’s worried this will upset them and they will be too afraid to have the discussion.*
Steve is not alone.
April 16 wass National Advance Care Planning Day. A new Harris/Decima poll indicates that while six in ten Canadians believe it is extremely important to talk to someone about their end-of-life care preferences, only 45% have done so. The poll also provides some interesting reasons why Canadians are dragging their heels on this important issue.
“It appears that while Canadians seem to know that it’s important to talk about end-of-life preferences when they are healthy, they are also quick to find excuses for not doing it,” says Cari Borenko-Hoffmann, Advance Care Planning Coordinator for Fraser Health. The poll states that 39% of us are simply too ‘creeped out’ to have those tough conversations about end of life decisions. Borenko-Hoffmann encourages these conversations to be about living and living well. “The reality is that they are critical for your family and your health care providers. Only you can decide what gives your life meaning. These are personal, individual choices that everyone makes to ensure that now, as well as at the end of your life, you receive the care you want. Advance care planning ensures your voice is heard even when you can’t speak for yourself. “
Advance Care Planning, a process of communicating your wishes for end-of-life care and naming a Substitute Decision Maker to speak for you if you are unable to do so, offers a way to start the conversation. Fraser Health is a national leader in Advance Care Planning, having a formal program for eight years with monthly education and information sessions for health care providers and the public. In addition, the Advance Care Planning in Canada Project provides a number of tools and resources through its Speak Up campaign, including workbooks, videos and wallet cards.
Borenko-Hoffmann notes that health professionals, particularly in Fraser Health, are doing a better job of asking about patients about their care decisions, but emphasizes that individuals should also take control of their own future. “This isn’t surprising considering nurses, doctors, social workers and other healthcare professionals have been engaging in advance care planning conversations for years. What is different is how we package it —making the conversations more focused and purposeful, supporting the on-going involvement of loved ones and medical practitioners in the process, and finding ways to document decisions,” she says. “It’s clear that we all understand that it’s important to have these conversations. Now it’s time to stop making excuses and start talking. Speak up and make your voice heard.”
*Fictional story to illustrate the importance of Advance Care Planning.
Podcast about Advance Care Planning with Cari Borenko-Hoffmann, Coordinator for Advance Care Planning at Fraser Health.
What is an advance care plan?
An advance care plan describes your wishes, in the event that you cannot speak for yourself. Your plan may include information about your values, goals and preferences for procedures that you do or don’t want to have as well as other information about your care (for example, religious rituals, being able to see a family member). One of the most important aspects of advance care planning is ensuring that the person(s) who would be your Substitute Decision Makers—someone who will speak on your behalf and make medical decisions for you if you are not able to do so yourself – knows your values and beliefs and could honour your choices. Click here for details.
Who should have an advance care plan?
Every healthy capable adult should have a plan, along with those with chronic or terminal illnesses. You can’t predict how or when your health will change, so having a plan ensures that others know your decisions and that your voice will be heard if you cannot speak for yourself.
When is an advance care plan used?
Your plan is only used if you are unable to make your own health care decisions (e.g. you are in a coma or your illness has impaired your ability to make decisions). Your substitute decision makers can use it to guide your care and to express wishes on your behalf.
Can an advance care plan be changed?
Yes. Our lives—and the people around us—change over time. You will want to review your advance care plan regularly and revise it to be sure it reflects your current wishes and reflect your current health. Remember, it will only be used if you cannot speak for yourself.
For BC resources, click here.
For national information about advance care planning and a number of tools and resources to make a plan and start the conversation, click here.