With an aging population, more and more Canadians need to start thinking about how they want to spend their final days. It's a subject that many patients don't want to talk about. To change that, a McMaster University professor has written a conversation guide to urge doctors and patients to begin to talk about the end of life.
The new guide, authored by associate professor John You, was published in the Canadian Medical Association Journal.
CBC house doctor Brian Goldman suggests doctors could begin the end-of-life conversations with the following questions:
- "Tell me how things have been going."
- "I'm concerned about your overall health."
- "Have you thought about how your health has gone in the last year or so?"
- "Do you have a living will or advance directive? Do you know what these terms mean?"
In an interview with CBC Radio, Goldman talks about the sensitive issue of end-of-life discussions and McMaster's new conversation guide.
CBC: What should doctors be doing that they may not be doing right now?
Goldman: Research from the Canadian Researchers at the End of Life Network, based in Kingston, Ontario, and McMaster University say doctors should approach all patients who are admitted to hospital with serious illnesses and a high risk of dying. If you can't approach the patients, you approach their family members.
The aim is to give them options to help them figure out what kind of care they want and, if they want care, to identify their wishes. The process might resolve in patients making some decisions as to what they want or what they don't want, signing an advanced directive which states their wishes when they can't speak for themselves, or designating a surrogate or substitute decision maker to speak on their behalf if they become unable to do so.
You talked about encouraging doctors to begin this conversation when patients are admitted facing life-threatening situations. It seems like there are other opportunities to begin this conversation as well.
Yes. I would say that theoretically the best time to have the conversation is when the patient is well. They talk about the 40-70 conversation when the adult children are 40 years old and their parents are in their 70s . It's a great time to have the conversation but we live in a death-denying culture and the problem is a lot of people don't want to talk about it. They think the purpose of doctors is to fight death until the end. In fact, the researchers here are saying the next best time is if the patient is seriously ill and admitted to hospital. So they've developed some criteria to tell you that you are closer to the end of life than you think.
One would be 'are you age 55 and older and have one of five serious diseases: metastatic cancer, end-stage dementia, severe heart failure, severe chronicle obstructive lung disease and severe cirrhosis of liver?' In addition to those, for any patient over the age of 80 who's admitted to hospital with an acute medical or surgical condition like pneumonia, stroke and heart attack, you are closer to death than you think. People don’t like to talk about it.
You are right. It doesn’t come across as something that's polite conversation. How do you begin to have it?
You start with a script and you actually learn your practice. If you are a doctor, the whole idea is you just want to get this whole conversation started. You can start with "Tell me how things have been going," "I'm concerned about your overall health," and "Have you thought about how your health has gone in the last year or so?" Another question you might ask is "do you have a living will or advance directive? Do you know what these terms mean?" You don’t ask all of them, you just ask one. The idea is to start the conversation and listen very carefully how the patient is responding.
How does the doctor determine when it's the right time to have the conversation if the patient is reluctant?
This is late in the game, but this is the second best time to have it. When you are listening to the family, you are listening for trigger phrase like "we'll cross that bridge when we get there" or "we'll wait until it's really necessary to have the conversation." They are telling you they don't want to have this conversation right now or the patient is saying "I don’t plan on getting sick." You can drop the conversation at that time.
If you know the patients really well, you might explore why it is they are reluctant to continue the conversation. You are not going to push it. But maybe the issue here is they might have a magical belief that talking about it means it's going to happen next week. You may be in a position to ease some of their anxieties, but if they don't want to talk about it, you are not supposed to push it.
It must be difficult for the doctors on the other side of the conversation as well to begin this conversation.
Yes. There are complex reasons. We function in the same death-denying culture that the rest of us are in. So we don't like talking about it because we may think we are wishing it on our patients or they may get the wrong idea about why we are talking about it. Or we are afraid the patient may interpret that as a failure. Human nature being what it is, doctors avoid the conversation if they can. It may be that they don't know how because they haven't had a good mentor.
So to that end, one of the things that can be done is teach people. There's a new idea that's out there. It's a checklist in the same way we have a pre-operative checklist to identify the correct patient, the right operation on the correct side of the body and the complications. Use that same approach with end-of-life issues to make sure you are covering all the right topics in the right order that you'd given the patient and family an opportunity to talk about the issues. These are the early stage of this kind of effort. It's been developed in Boston at the Dana-Farber Cancer Institute. It's not ready for prime time yet but it may well be.
This interview has been edited for length and clarity.