Today is National Advance Care Planning (ACP) Day – a time Canadians are reminded to consider their values and wishes and to communicate them to the people they care about, as well as their healthcare providers. It's also about considering who will make care decisions for them if they are unable.
To mark the day, Dr. Gaetan Tardif, Medical Program Director at Toronto Rehab, sat down with Ann Heesters, Director of Bioethics at UHN, to share some personal and professional thoughts on ACP.
Q: Why is Advanced Care Planning (ACP) an important issue for you personally?
A: My mom died in 2002, in Ottawa. My dad and sister were both living there at the time, and I was living in Toronto. My mom had bowel cancer and, unfortunately, the chemotherapy caused her to have another type of cancer – a blood cancer – and that's what she eventually died from. Her blood cancer caused anemia, and the only way to keep her alive was to get her to the hospital every couple of weeks for transfusions. She didn't like it, but the non-medical members of the family thought if it can be done, then why not? They wanted my mom to keep having transfusions and these transfusions became the central point of her life for months. (My wife, who is a palliative care physician, and I were able to view this in a different light.)
One day when I was visiting, my mom took me aside and asked me to "make it stop." She didn't want any more transfusions even though this would ultimately lead to her death. She said she was always tired and she was sick of being cooped up at home. You could see she was unable do things and to enjoy the things she always loved to do. She clearly said that she did not want to die in a hospital. This made a lot of sense from my perspective, and it made intellectual sense for my dad and sister, but it was difficult for them to cope with it.
A few weeks later, I called my parents' house and no one picked up the phone. I called my sister who informed me that our mom had a setback. I was on the road at 4:00 a.m. and arrived in Ottawa by 8:30 a.m. My mom was still at home and I managed to talk to her for an hour before she lost consciousness. At one point my dad had his hand on the phone to call 9-1-1 and I had to tell him not to do it because it's not what she wanted. My mom was clear about her wishes. I don't think my dad wanted to send her to the hospital because he knew what she wanted, but he also didn't know how to cope with the feelings associated with having a dying person in the house.
Q: Is there anything about your family that made your mom's passing easier or harder than it ultimately was? Were there surprises for you?
A: My family had more knowledge and support then most people in terms of care and awareness of how to do advance care planning.
After my mom's death, I realized that people were not asking their patients what they wanted and there are a whole bunch of people like my mom out there who had specific goals and values that would be important for us to know. From that point onwards, I became dedicated to advance care planning.
Q: Can you define ACP?
A: In healthcare, advance care planning is meant to capture the point of view of the patient. It is about making sure that whatever happens in the future is what the patient would want to happen. ACP is a question of being congruent with our patients' values and desires as they enter different phases of their lives.
Thoughtful advance care planning allows all patients to be equally informed about their healthcare choices and empowers them to have the same ability to make decisions that are right for them.
Q: As a medical professional, you've likely seen cases when ACP went well and when it went poorly. Is there a case that stands out in your mind?
A: There have been many over the years, but I can remember when I was a young physician and a patient collapsed in the middle of a physiotherapy session in the common gym. A code was called, but we quickly found out that the patient had specified that no CPR was to be administered in a case like this one.
Everyone was bewildered and someone asked me what to do. I said that we should just hold her hand, and we did, and she passed away peacefully. It wasn't easy at all, but I remain confident that it was the right thing to do.
Q: Do you have any thoughts about why ACP conversations are so hard? Are there steps we can take to make it easier?
A: I think the main reason people don't want to discuss ACP is because people don't like to do things that make them uncomfortable. If we could normalize ACP and give people good tools about how to initiate these conversations then that would help. We frequently ask our patients if they smoke, drink, use street drugs, etc. We ask about erectile dysfunction in order to assess the possibility of nerve damage. We ask hard questions all the time and it's normalized for patients. They are comfortable responding when we are comfortable asking.
Doctors have to be involved in these discussions, but nurses and other healthcare providers have to be comfortable too since they often spend more time with each patient and can identify moments when patients need further information or when they are signalling a change in goals or values.
Q: When should ACP discussions occur?
A: I don't think there's a hard start or a hard finish line on when advance care planning conversations should occur. Let's ask everybody about advance care planning and then continue the conversation. We need to know what to do if a patient's heart stops, we need to know who should make their decisions if they become unable to do so, and then we need to ensure that we have a process that allows us to respect our patients' decisions.
Patient preferences can't get lost in the middle of a chart. We need to know how to access that information quickly so we aren't flying blind when a patient gets into difficulty. Doing this work is non-negotiable – it's a key part of providing patient-centred care.
Q: Why do you think ACP should be more of an organizational focus?
A: It doesn't make a lot of sense to me for healthcare providers to say "my set of values must dictate what you want," but, to be honest, it took a while for ACP to evolve in rehab hospitals. People in rehab hospitals weren't terribly sick early in my career, so we didn't really think about what would happen if they had a cardiac arrest.
But now our typical patients are older and frailer with multiple comorbidities and maybe they don't want you to pump their chest if they have a cardiac arrest. Around the early 2000s, when we started working on ACP, a number of the physicians said that they were not going to have ACP conversations because it seemed to go without saying that you, as a doctor, would and should do everything that you can to save your patients. The question we asked was "Is that really what people would want?"
We must be consistent with UHN's value of patient-centered care and be clear about what we want to see happen around advance care planning. We need to provide our staff and patients with the tools to help make it happen.
