Advance Care Planning: a physician and counsellor’s perspective
Advance Care Planning is usually imagined as planning for the end of life, but it’s really about planning for your life, up to and including death. It’s about sharing your wishes, especially with a person who will speak for you if you can’t speak for yourself.
April 16 is Advance Care Planning Day, and it’s the perfect time to speak with the important people in your life about your beliefs, values, and wishes.
The Victoria Hospice Education and Research team sat down with Dr. Sabrina Gustafson-Vickers, Island Health Medical Lead for Palliative Care & End of Life, and Kari Marshall, Victoria Hospice Clinical Leader of Psychosocial Services, for their perspectives on advance care planning.*
What do you think is most important about advance care planning?
Dr. Sabrina Gustafson-Vickers: Designating an individual who could speak on your behalf if you couldn’t speak for yourself. If people can speak for themselves and comprehend the medical situation, our default is to have detailed conversations with patients in the moment. It can become trickier when patients are unable to speak for themselves and a medical decision is needed.
Advance directives are useful but can be either too detailed or too vague. It is difficult to predict what medical situations might arise. It is arguably more valuable to have identified an individual who could speak to your values, beliefs, and preferences, at the time a medical decision is needed, as they can weigh the pros and cons from your perspective and proceed from there.
It’s also important for medical professionals, such as your family physician, to be aware who your temporary substitute decision maker or medical representative is, and how best to reach them.
The best advance care plan has its basis in open, frank conversations with the person chosen to represent, so they feel well-positioned to speak.
Kari Marshall: The most important piece of advance care planning is that it invites people to have conversations with their families and to reflect on their beliefs, their values and their wishes. A part of that is often identifying who would be your representative if you couldn’t speak on your own behalf.
Advance care planning gets people talking to their family physicians, and it gets them talking to their families and loved ones.
When would you advise is the best time to start ACP discussions?
Dr. Sabrina Gustafson-Vickers: Right away, for everyone, because anyone could get into a car accident tomorrow. We’re all at-risk of dying unexpectedly or sooner than expected. When you have those conversations with your support people early and often, it normalizes checking-in with them about your preferences and hopes for your future care and quality of life. It also prepares them to feel confident to advocate for you if needed, rather than relying on assumptions.
Kari Marshall: The earlier the better, but certainly if you know that your end of your life is coming, it’s very important.
What are some common challenges clinicians face when following a patient’s Advance Care Plan?
Dr. Sabrina Gustafson-Vickers: If there is a very detailed plan in place, but it does not cover a particular circumstance, it can be hard to know which direction to go if patients can’t speak for themselves, or when someone hasn’t really highlighted who would be their temporary substitute decision maker. By law, there is an order of people that we must go through, starting with spouse and moving to relatives, for medical decisions.
But there are some people that we come across where either there is a conflict among family members, or some people don’t have a spouse, children, or parents. Or maybe they have friends, but it is just not clear who we should be contacting and for medical decisions – that makes our job really tricky.
When someone does go to their lawyer and drafts documentation, they should make sure their family physician has a copy of those documents, or a copy in the home that patient holds onto, or a copy that they give to their temporary substitute decision maker or their medical representative.
Kari Marshall: I think it can cause moral distress for health practitioners. Sometimes we see people, who from our perspective, are suffering unnecessarily, but it’s based on what their goals are. When someone is really ill and close to their end of life, we normally wouldn’t recommend CPR, for example.
Can you speak to the importance of regularly reviewing goals and preferences over time?
Dr. Sabrina Gustafson-Vickers: When people are expected to have months or years to live, their goals are probably going to be different than when they have days to weeks of time. Just as people’s health changes, their priorities will change. Hope can shift too, from hoping for more time, to hoping for better symptom control. And maybe near the end, a hope for good final conversations, or spiritual closure. That makes it really important to check-in along the way. And it is really helpful as a physician to chat with patients about that, in a time of calm, not in a moment of crisis, or where symptoms are poorly controlled. When things are medically stable is an excellent time to check in with physicians and nurses around your values and priorities.
Kari Marshall: People might think they know what they want but that can change. For a lot of people, it’s really about quality of life. They may ask themselves, “do I have enough quality to want to continue living at this point?” Sometimes what people think ahead of time might not be an acceptable quality of life actually may turn out to be okay for them later.
Learn more about advance care planning from the BC Centre for Palliative Care.
*The interview has been edited for brevity.