PETER SAUL: I was summoned to the ward by a respiratory physician to see this poor man who had very widespread lung cancer. His family were all standing there, and the respiratory physician said, “Well, do something!”
That's all he could say to me—he kept saying, “You've got to do something, you've got to do something!” And I'm thinking, “This guy is dying.”
CAMILLE MERCEP: From the RACP, welcome to Pomegranate—a new medical podcast created by physicians, for physicians.
In this—our first program—we're starting at the end, with a look at end of life care and decision making. It's a hard topic to discuss with patients, maybe the hardest. But it may also be the most important conversation we're not having. In today's episode, we'll be speaking with intensivists andpalliative care physicians about why we need to talk about death, and how to start and document these discussions.
Whether you respond with grace, panic, black humour, or dread, dying is a part of life. And that matters. So keep listening as we discuss “Recognising Death.”
AMANDA WALKER: I think definitely the specialist can start the conversation around the time of diagnosis. So for example, if you're diagnosing someone with renal failure you can point out that this will eventually catch up with them. “Even though you're starting dialysis now, there's a point in time when you will be stopping dialysis.” And you can flag likely issues that need to be thought about.
That doesn't mean that you have to be depressing, it doesn’t mean that you have to “take away all hope.” I think a lot of the time people worry, “If I hit them with the word that they may be dying, I'll remove all hope and curse them to a terrible last months or years of life.” But you're giving them the hope of a better death—and that's not a small thing to be sneezed at. That's actually a really big thing. The hope of the best death possible is a really good outcome, and it's an excellent clinical outcome that we should be aiming for.
My name is Amanda Walker and I'm a palliative care specialist from south-western Sydney. I also work at the Clinical Excellence Commission, which is the peak quality and safety body in NSW, as the Clinical Lead for the End of Life Program.
PETER SAUL: My name is Peter Saul. I'm a senior specialist in intensive care for the Hunter Local Health District. And I work both at John Hunter and at the Calvary Mater hospitals.
My own approach to communicating about end of life is not to think of it as “breaking bad news.” I actually think that frames it badly. I think if you frame it as “telling the truth with kindness,” it probably comes over as slightly better than “breaking bad news” makes it sound like.
My own approach is to take a structured approach. I actually think that communication skills revolves around taking them as seriously as you would take anything else. But there's one key that is common to all structured approaches, and that's the dominance of listening rather than talking. I think if you find yourself listening 75% of the time, you're winning.
CHARLIE CORKE: I'm Associate Professor Charlie Corke, and I'm talking to you from Barwon Heath.
I think the important thing for everybody to do when you're talking to patients about what they're hoping for, is just to ask the next question—which is what they're hoping, really hoping, to avoid. Because that gives you some balance. And the second you have that, it's all easy.
Whenever my registrars are saying, “You know, I want some help—I'm going to talk to somebody and what shall I say?” I say, “Well, why don’t you speak to me? I'll be the husband, or I'll be the wife, or I'll be the daughter, and you talk to me and tell me what you're going to say.” And when they do that it's entirely safe, and it's very easy to stop and run back and do it again. This is the best simulation we can possibly do, it's the easiest simulation and the cheapest. So just over a cup of coffee, just do it as if you're going to do it—do it with anybody.
PETER SAUL: There's a major myth abroad in medicine, generally, about end of life care and planning, and that's that it's somebody else's problem.
Almost all the physicians that I've interviewed and that we've interviewed as part of projects have always imagined that somebody else was talking to the patient about end of life. So we did focus groups with GPs who all thought that specialists in hospital were having deep and meaningful conversations with patients in outpatient clinics, and they weren't. And when we interviewed the specialists they all thought the GPs were receiving the letters and immediately summoning the patients and having end of life conversations, and they weren't. The big myth is that somebody else out there is looking after dying patients, and they aren't. So actually, the bottom line is that it really is your job.
AMANDA WALKER: What I would love to see is for people owning the space—owning uncertainty and having conversations, even if they don’t know exactly what the answer or the outcome is going to be. Because really, most of the time, most clinician experts do have a sense of what could happen, and there's probably one, two, or three different options. But because “it's all on a spectrum,” we tend to keep working towards the best, which is that the patient improves and gets better and goes home—without acknowledging the possibility of deterioration until it has actually already happened.
Often people will comment, “But surely that's the most important thing a doctor could tell me—that I might die, or that my mum might die. Of all of the pieces of information, my blood counts don’t matter. That my mum could die of this illness, or that she is so sick with this exacerbation that she may not leave hospital—that's really important. And for most people, that's the most important thing a clinician could communicate.
PETER SAUL: A very good opening question, when you don’t know what to say to somebody who you don’t know, and you don’t know which way things are going to go, is: “In the event that you became so unwell that you were unable to speak for yourself, who would you like us to talk to?”
This is particularly important where guardianship legislation makes that a very important decision-maker. But also it seems like quite a neutral sort of thing to ask somebody, it's like an information question. But it's a way into having a discussion about, “Well, do you think I might end up like that?” And you say, “Well, you know, quite a few people do.” If they say, “Well look, I want my daughter to be my decision-maker,” then you say, “Well, have you spoken to her about the sorts of things that you might want?” So in New South Wales in particular, but probably across Australia, a very safe, unchallenging opening question is, “In the event you are too sick to speak for yourself, who would you like us to speak to?”
CHARLIE CORKE: We've done research with the Centre for the Study of Choice at the University of Technology in Sydney, and what we looked at was getting people to rank the hierarchy of their values. They weren't able to hold all the values together, they had to put the ones that they thought the most about above the ones that they didn’t. And when we did that we found that over 90% of people express limits as to how far that they want to go with medical treatment.
There's still 7% who are quite keen to go all the way and I think that for me that's terribly important because once I know who they are—heavens, we've got the stuff for them. This is a group that probably would go further than I would feel comfortable for myself, but that's part of being a doctor—doing stuff for people that may be more or less than you would want for yourself. And that's the art of medicine I think.
PETER SAUL: Probably the largest-ever study done into advanced care planning has come through the Respecting Patient Choices Program, which actually started off in the U.S. and brought over to Victoria by Bill Silvester at Austin, and was rolled out with federal government funding to every state and territory. John Hunter was the test site here.
What we did was to train about 200 doctors, nurses, and social workers to have end of life conversations—a 2-day training program—and encouraged them to try and encourage patients and their families to have conversations while they were in acute care about what they wanted to have done. The outcome was very encouraging, actually. The sorts of documents people produced were advanced care directives, advanced care plans, discussion records, statements of wishes, enduring guardianship appointments. And most importantly, when we actually identified people who had died, and then went back to see if they had written something, there was actually a 100% chance that their wishes would have been honoured. What we discovered was that doctors are very responsive to plans that they see the patients have. If patients says they want something, doctors are very responsive to that—an extremely encouraging sign.
It was interesting that when the funding ran out and the Respecting Patient Choices Program stopped, we still had the 200 trained people but they didn’t any longer feel supported in doing this. It seemed that they had to have in place support from senior staff, really ongoing encouragement to keep doing this. If you just left things to run as they normally do, the culture of not talking re-asserts itself. It's very powerful in acute care, the “culture of cure,” that you don’t actually talk about people dying, you only talk about what you can do next. And within a year I would say of finishing the training, pretty much everybody had dropped out and nobody was having those conversations anymore.
CHARLIE CORKE: Whether you write on the legal document of your state, or whether you write a letter, or whether you write a list of wishes, or whether you just say it when you're sitting watching TV to your family, or whether you make an announcement to the family over a Christmas dinner—they're all ways of communicating information, which have sort of a hierarchy of validity and importance.
When we are trying to think what to do, all of those things come into play. The difficulty for us is that each state does something slightly differently. Even within the states different people respect different things to a different degree.
PETER SAUL: I think one of the things that everybody should have a crack at is making their own plan.
We talk about advanced care planning and advanced care directives—I think if you haven't had a try at it you don’t really appreciate what the problems are. It's informative in all sorts of ways to do it, and you can go to myvalues.org.au and try and do your personality—this is Charlie Corke's website. You can go to starttotalk.org and actually try registering and filling in an advanced care directive yourself. I think this would be enormously educative for people to have a crack at. It would show something about yourself but it also shows something about how other people are trying to wrestle with this as well.
AMANDA WALKER: I think we can borrow from our obstetric colleagues in the sense that they work with uncertainty all the time. Very few people are born on their expected date of delivery—people are born some time around then. But the important thing is that we talk to potential parents and we say, “These are the signs to look out for: if you start having contractions, if your waters break. These are all of the things to watch out for and you will see changes. Let us know when you're seeing those changes. When these things start to happen, that's the time to come and see us.”
And in the same way we can actually start to identify with patients with this condition, “These are the signs that things arse starting to change, and that's when you will know that time is getting shorter.” And you actually can have some sense of what the future will hold for that person, or what it's most likely to hold, at least. And that actually allows patients and families to have a much stronger sense of control as things are starting to change. Because I think control is actually one of the hardest things with an advancing disease.
CHARLIE CORKE: In terms of resources I would suggest The Next Steps, which is on the Victorian government website. I would recommend Vital Talk on the Vital Talk website, which is vitaltalk.org. And in terms of a book, I would recommend Mastering Communication with Seriously Ill Patients: Balancing Honesty with Empathy and Hope, by Back, Arnold, and Tulsky. I think it's really excellent—it's only a little book, but it's really good.
PETER SAUL: There are reliable tools for identifying people in the last year of their lives, and one of the things that we can do that would make the biggest difference is to use them. In any setting where you see somebody—somebody sits across the table from you in a consultation, your thought is, “Could this person be in the last year of their life?”
There are simple tests—frailty scores, gold standards framework, the SPICT tool—they're known to some but not many, but in fact they're widely applicable. If we were able to identify people who only had a year or less to live, we could attend to their special needs in a timely way. So if they hadn't thought these things through—a lot of people want to have their affairs in order, but we cheat them of that if we don’t tell them that they may be dying. Just presenting three times to an ED in a year may be a simple screening tool. So I think we owe it to our patients to try and identify those who may be dying in the next year.
A second resource is to go looking for a structured approach to having these discussions. There are mnemonics—there's the VALUE mnemonic from the U.S., there's Charlie Corke's system. I actually feel like no matter how experienced you are, you're always better if you go in there knowing how you're going to introduce the subject and how you're going to conclude the conversation, and something about what might happen in between.
AMANDA WALKER: Death is a human experience, and it's going to happen to absolutely everyone. It's the one universal health outcome. And it's kind of—well you could say sad, but you could also say pathetic—that we pretend that that's not the case. Because when you stop to think about what patients most need from their clinicians, it's realistic information that gives them fair warning, that gives them an opportunity to prepare for their dying. People often worry that that's depressing, that that's going to be negative, that that person will lose hope, but in fact the evidence seems to suggest that having open good conversations about this opens up opportunities for people to live better, and to better savour every moment that they have.
CAMILLE MERCEP: Many thanks to Charlie Corke, Peter Saul, and Amanda Walker for the insights shared on this program. The views expressed are their own and may not necessarily represent those of the Royal College Australasian College of Physicians.
You can find more information and links to all the tools and research mentioned on today's episode—including advanced care planning forms by state and country—on our website, racp.edu.au/pomcast. Let us know what you thought of this episode, or share what you would like to hear on future shows, by emailing firstname.lastname@example.org.
Pomegranate comes to you from the Learning Support Unit at the Royal Australasian College of Physicians. The program is presented by Camille Mercep and produced by Anne Fredrickson. On the next episode we'll be continuing today's discussion, looking at social and cultural aspects of end of life decisions—including medical culture itself.
ANDREW WATKINS: We are dealing with families, and the label that they come attached with—culturally or religiously—does not necessarily define them. The critically important thing is to find out what their beliefs mean to them, and the terms in which they can negotiate them.
CAMILLE MERCEP: Please join us.