ANDREW WATKINS: I've got to have the ability not so much to know what every religion and culture teaches, but to have the understanding that these are the central tenets—these are the questions I should be asking—to tease out what is important to them, in their own terms, in this situation. That's an area which is attracting increasing attention in medical education, but I don’t think we're there yet: the ability to ask the questions, and the humility to accept that we don’t know all the answers.
CAMILLE MERCEP: From the RACP, this is Pomegranate—a medical podcast by physicians, for physicians.
For the first few episodes we're looking at the challenges doctors face in end-of-life care and decision-making. The population in Australia and New Zealand is ageing, which focuses the political attention around this issue on adult children and their parents. But in the ICU it's sometimes parents who must make end-of-life decisions for their babies, often before they are born.
You've just met today's guest, Dr Andrew Watkins—a neonatologist at the Mercy Hospital for Women in Melbourne. He works with families like these as they confront the tragedy inherent in perinatal palliative care. During what he calls "the worst 8-12 months of a parent's life," he's observed how the attitudes of the medical staff can ameliorate or sometimes worsen the situation—especially when their cultural or religious backgrounds are different from that of the family.
We'll also hear from Dr Peter Saul, an intensivist at John Hunter Hospital in Newcastle, who was featured on our last episode. While the patients and families they see are different, both Dr Watkins and Dr Saul share a communication approach that might be termed "cultural humility.” In this episode, they discuss the role of family and religion in end-of-life care, and why it often clashes with a professional preference for autonomy.
PETER SAUL: The role of the family when it comes to end-of-life is very complex. A lot of people who perceive themselves to be dying are very responsive to their family, and I think the idea that the patient is somehow separable and you could have a conversation with the patient that didn’t reference the rest of the family is actually unrealistic. Even in Western families, and more so in other cultural groups, that would just be an unrealistic thing to do.
Sometimes that causes serious complications. Not uncommonly and particularly in certain cultures, not talking about dying is actually a major thing; “if you talk about it you bring it on.” And I think even in Western societies it's not that uncommon—we are quite superstitious. Some societies don’t have a word for cancer, they just call it “the evil disease."
So it's quite complex; I actually feel like we have to become a bit less brutal. We think of ourselves as being straight shooters, straight from the shoulder—we come in, we tell the truth, and we don’t care what harm that causes. I think we have to move away from that and take our cue from the patient and family as to how this is to be approached. Which is another good reason to start with open ended questions and actually ask people what they know and establish how they talk about these things.
ANDREW WATKINS: The autonomy-based model that I use as sort of a Western, leftie, reasonably powerful, reasonably well-connected person—that works for me. I make the decisions that affect my life. But if you come from a tradition for example like Islam, where one of the tenets of the Koran is “it is not given to any soul to die, save by the leave of God, at an appointed time,"—at least on the face of it, a decision about whether I live or die is actually not available to me. It’s not on the table.
But there is also an acceptance of the fact that death is a part of life, and if you explore things further, there are ways in which that is negotiated. But the family with whom you are dealing may, at least in the beginning, have that view. Or probably even more importantly, the medical team may have a view based on that, a sort of stereotype that "it is always impossible to cease or modify treatment in this situation.”
Now, further exploration indicates that it often is possible, particularly if a different communication model is needed. It might be that you have to involve the extended family in some way, which of course is anathema to conventional Western concepts of privacy and autonomy and things like that. But you often get no conversation unless you've involved the wider family—or, in various cultures, you often can get a significant unlocking of the situation if you involve an appropriate religious advisor. And if it then becomes clear that the medical opinion is that death is inevitable, it may then become possible for families to move forward.
PETER SAUL: I think when we come to having debates about anything about end-of-life, it's not primarily or solely a medical issue. I think we’ve got very confused here: dying is not medical. We get obsessed with what people die of and whether we can prevent it, but in real terms dying is social, personal, spiritual, legal, before it is medical. And I think if we're going to have discussions about end-of-life and how these things should be managed, to have it just concentrated into healthcare makes no sense. I think when you have conferences where people from a wide variety of different backgrounds get together, then we have a conversation which is very different from what we'd have if we were just talking ourselves.
I think one of the major weaknesses of the medicalisation of dying has been that doctors have such a narrow level of interest in what's going on. We're all fascinated by whether this is streptococcal pneumonia, stuff like that—but that isn't what the family is bothered about. They don’t care what germ this is. They see this life—this trajectory, this narrative—that's just being curtailed.
ANDREW WATKINS: It's very important not to make assumptions about what people believe, or what people might believe, and it's very important not to make assumptions about what the preferred communication and support models may be. Because they may not be the same as I might use in my own situation.
It's interesting if you look at narrative studies, where people have interviewed families who've had babies die in intensive care. And one of the things that comes out fairly consistently is that while we doctors talk about percentages, and chances, and risks; and death and disability and X percent chance of this and Y percent chance of that—very commonly the parents report that: a) they couldn’t remember them; b) they weren't listening; and c) they were irrelevant to them anyway.
So the question is whether we doctors use those percentages as a protection or as the analytical tool that we use to analyse problems, or perhaps as protection for ourselves when they're of little meaning to the parents. The things that come out in the narrative studies is that parents consistently want to maintain hope; they don’t like a completely negative prognosis. They need to feel that they have some choice about what is going to happen, or perhaps how it is going to happen, and they need to feel listened-to, they need to feel that their grief is respected and that their baby is respected as a person.
PETER SAUL: I do recommend a structured approach to dealing with people from different backgrounds; the one I most recommend is Marjorie Kagawa-Singer’s “ABCD approach”— don’t make any assumption that just because they’re from a particular culture that this is the way they will behave, but ask them things like "So how in your family do you normally make decisions of this type?" and "How in your family do you normally have conversations like this?”
These are useful questions to get people to tell you how to approach them, which is in the end the most successful way. Rather than just seeing somebody through a cultural lens—you know, “If you are wearing a hijab, I talk to you in a particular way”—I mean, clearly that is wrong. What you have to do is establish how that particular individual makes the decisions, and how that particular family makes decisions, which may or may not be consistent with their particular culture.
And I think if we start to think of ourselves as being "culturally competent" that's just pure hubris. I think what we need to teach is "cultural humility," which is: we don’t understand your culture and indeed, you may not. What we can hope to understand between us is how you and your family make end-of-life decisions and have conversations about end-of-life in a way that you feel comfortable with. And that's what we're trying to establish.
ANDREW WATKINS: Many years ago we had a baby who was very prem, very sick, who had been somewhat mishandled elsewhere, and where the mother was young, Aboriginal, very disadvantaged, and was clearly not travelling well. There was real difficulty engaging with her. She was in the unit, sitting by the bed quite a lot but wasn't talking, and in terms of conventional one-to-one conversation we were unable to get much progress.
But the thing that unlocked it was when, in conjunction with our Aboriginal Liaison Team, got in the mother's sisters, the mother's aunties, the granny, a few uncles, and started from scratch with the whole group.
And the mother was transformed. She was able to talk vividly and powerfully about how she'd been treated really very badly at the referring hospital, and really vividly and powerfully about what the experience meant for her, and was able to participate in decision-making around the baby very effectively and powerfully. This was a person whose every exposure to institutions had been bad, and was simply not empowered in a way that she could, as a person on her own, stand by the bedside and advocate for her baby. But by creating a slightly different model in which she was part of a group, she could advocate for her baby very powerfully, and it was very clear that she loved her baby better than anybody else.
To come to grips with the different religious and cultural meanings placed around death and decision-making, it's difficult to deal with that by interviewing families. Because the numbers you can deal with in intense interview studies are inherently small, you get a view that’s representative of that particular person. And that's valuable, but you need a massive dataset to get a truly representative view.
So in the course of sort of working up a teaching package, we decided that what we would do is interview pastoral carers from different traditions, or community representatives who've got exposure to these sorts of decisions, from the different traditions and cultures, in the hope of getting a view of the spectrum of belief and practice within each tradition.
It's very easy for there to be a stereotype view of what Catholics believe and Muslims believe etcetera, but not all Catholics believe what the Church tells them that they have to believe. Or certain strands of the Church tell them that they have to believe. Islam is incredibly diverse—similarly within the Buddhist tradition, there's a wide range of views. So what we were trying to do is to interview pastoral carers from a variety of different traditions and we ended up with 11 big interviews.
So again it's a small dataset. But what that showed and what the literature also shows is that within each tradition there's considerable diversity of opinion, based usually around the fundamental tenets of each particular tradition but interpreted differently. In other words, the lived reality on the ground has a spectrum.
And also the thing that came out interestingly in the interviews that we did, and also comes out in the literature, is that the further down you go into most religions and traditions, the more overlap there is. Any religion that's survived a few thousand years has had to find ways of coming to terms with death—there's a lot of it around. And also with decisions around death.
So all of the three main religions of the book have clearly an understanding of death as part of life, all have various degrees of proscription about intentional ending of life, but all make the distinction between intent and acceptance, the double effect distinction—it’s illegal or proscribed to intentionally end life, but if you undertake an action for good reason, such as for example sedation or pain relief at the end-of-life, and if the foreseeable but unintended consequence of that is a shortening of life, your motive for doing it was licit, it achieved a good thing for the patient, and the shortening of life is not proscribed: the “doctrine of double effect.”
That basic doctrine is sort of most clearly formulated in Christianity but you can find the essentials of that in most other traditions. In other words, an acceptance of the fact that sooner or later we all die, we arrive there by different paths, and that there are things which are important as well as prolonging life—like ensuring sentience, ensuring pain relief and things like that. Once you've got that sort of understanding it can then unlock a lot of discussion.
PETER SAUL: I think we consistently over estimate people’s wish to plan, and the idea that they have goals and preferences pre-set and that it's our job just to find out what those are. That isn't how people are—people don’t come to you with a way, what they come to you with is: reactions to what you tell them, reactions to what's wrong with them, responses to things that you say.
So unless we frame what we're trying to do as a conversation we get nowhere, and it's an ongoing conversation. This is not a one-off "Oh, once we've established who you are and what you prefer, then everything else will flow from that and it's all plain sailing." It's not like that at all. People are very inconsistent; everybody knows that they keep changing their minds.
What I think we have to do is continue to have a conversation which is real, and honest, and transparent, and invite people to make choices that are available at that time—realistic choices. We don’t offer a smorgasbord of unrealistic choices as well, but when there are realistic choices to make, that's when people get to make a choice.
But it isn't anything like the way it's framed, it's not, “Oh you have a conversation, you establish what people want, and you do it and everybody's happy.” It just isn't like that at all.
ANDREW WATKINS: Years ago I was dealing with a Buddhist family who had a baby with a severe neurological injury, who were able to logically see that this baby had no prospect of meaningful survival. And they could logically see that the only humane and sensible way forward for their baby was to stop treatment.
But they were deeply religious and very theologically literate, and for them the sticking point—particularly for the father—was that this child in this incarnation had had no ability to acquire merit, so was thereby compromised in the next incarnation. And any shortening of this incarnation would increase the risk of his subsequent reincarnations being compromised.
And of course I had all the answers to that [laughs].
I'm no expert on Buddhist theology and I couldn’t provide an answer for them. All we could do as a team was to keep the conversation going around those things, and to tease them out a bit. And in the end the father found the solution. He went to the temple and made a promise in his son's name to build a temple back home. And, having acquired merit for the son, was then able to come back and make very conventional decisions around end-of-life care. And he then had to go home and build a temple, which he duly did, and they made a good adaptation.
So sometimes—well, very commonly—our job is not to provide the answer. Our job is to sort of hold a space and to ask the questions and to keep the conversation going so that the answer can fall out of the process. The most that any of us could do in that situation was to acknowledge our own ignorance and keep the conversation going.
CAMILLE MERCEP: We'd like to thank Andrew Watkins and Peter Saul for speaking with us for this episode. The views expressed are their own and may not necessarily represent those of the Royal Australasian College of Physicians. Links to the narrative studies they mentioned, and some recommended tools for "cross-cultural communication," are on our website: racp.edu.au/pomcast.
While you're there you can listen to our first episode, or let us know what you'd like to hear on future podcasts. Get in touch 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 concluding our series on end-of-life care, with legal experts from Australia and New Zealand. They'll be talking about how an understanding of the law can support doctors and families facing hard decisions.
BEN WHITE: Who decides whether or not someone is able to say “No” or “Yes” to treatment, and in what circumstances; and if a person lacks capacity who should be able to decide for them, and how they should decide—these aren't exclusively, or even mainly, clinical issues.
CAMILLE MERCEP: Please join us.