How do you want to live your life at the end?
Advance care planning is about more than just planning your death; it’s about understanding how you want to live your life. It’s often a deeply personal experience that involves reflecting on what is important and meaningful to you and sharing your desires, values and beliefs with those around you so that they are aware of your health care wishes should you become incapable of communicating them in the future. It’s not a static process; instead, it changes over time as you enter various life stages and your priorities change.
It’s not always easy, but taking the time to reflect on and discuss these issues can lead to better experiences at the end-of-life. Yet, despite the importance of advance care planning, a 2012 study done by Ipsos Reid for Canadian Researchers at the End of Life Network (CARENET) and Fraser Health showed that 86% of Canadians are not familiar with the term, less than half have talked to a family member or friend about their wishes for care if they become ill and are unable to communicate, and only 9% have ever spoken to a healthcare provider about their wishes.
Last year we at the College of Physicians and Surgeons of Ontario hosted a forum of experts in the end-of-life care field and learned that if we wanted to help make meaningful improvements to end-of-life care, there was work to be done to break down communication barriers and replace misunderstandings and assumptions with informed discussion. With this in mind, we have started a conversation about end-of-life care that I hope you will join.
As part of this conversation we’ve talked with some doctors, advocates, and patients about advance care planning to try and identify some of the specific challenges faced by both doctors and patients. These interviews helped to shape my thinking and made it clear to me just how important communication is when it comes to advance care planning.
Naturally, doctors and patients alike may be uncomfortable discussing mortality. Doctors may not want to alarm their patients or take away their hope by broaching the topic, patients might not be ready to ask themselves some tough questions, and families may not be ready to confront the death of their loved one. But just taking the time to ask some questions and get the ball rolling can be really helpful.
For example, if doctors just asked a patient whether they’ve ever talked to anyone about their treatment wishes, it can be a big step forward. Asking this question allows a doctor to extract the information they need if the answer is yes, or encourage their patients to start thinking about advance care planning if the answer is no.
The benefits to patients are clear as well. Reflecting on these issues and having conversations with those around you will help to avoid situations where families are confronting the death of a loved one, with no real sense of how to proceed. One patient we spoke to recounts the deaths of both her parents, commenting that advance care planning helped both of them spend their final days in a way that was consistent with their wishes and gave everyone “a sense of peace.”
Moreover, choosing a substitute decision maker can actually help people to think about and reflect more deeply about what’s important to them and what they value most in life. And while it’s true that nobody can anticipate exactly what might happen in the future, when the people you trust have an understanding of what your health care and life wishes are, it’s far easier for them to make decisions on your behalf.
We need to normalize these conversations and make them a part of our everyday practice. Doing so will give us ample time to think through and consider the issues, as opposed to merely reacting at the time of crisis. By taking these steps and following through with advance care planning, it has been shown that we can increase the quality of end-of-life experiences for both patients and their families.
Ultimately, we all have a role to play in ensuring that appropriate end-of-life care is provided. Doctors in particular have a role to play in breaking down communication barriers, engaging with our patients, and encouraging them to think about and discuss these issues so that we can act appropriately.
Rocco Gerace is the Registrar of the College of Physicians and Surgeons of Ontario.