MIC CAVAZZINI: Welcome to Pomegranate Health. I’m Mic Cavazzini. Today’s episode is a bit special. First, it comes after we received a prize at the recent Australian Podcast Awards, for best career-related podcast. It’s a real testament to the quality of guests over 37 episodes and to the RACP members who’ve provided critical feedback. Thanks to everyone who has supported this project and to the thousands of regular listeners like you.
As another example of this community’s depth, today’s show comes to you from the RACP Congress held in May. You’ll hear parts of a session hosted by the College Ethics Committee that was centred around two provocative case studies—one from the paediatrics setting and one from palliative care. Bear in mind that only a sample of possible perspectives could be captured in the time available. None of the speakers you’ll hear would presume to have the conclusive verdict, but do they push hard at each ethical premise just like you’d test a maths theorem. Unfortunately, real life is not as tidy as maths. Agonising questions are faced every day in hospital—questions about quality of life and the merit in trying to prolong it, questions about the cognitive competence to make such decisions, or questions about reasonable distribution of resources.
Before getting into the case studies, committee members Linda Sheahan and Ian Kerridge give a brief background to the growing role of clinical ethics support in practice. Linda Sheahan is a palliative care specialist at St George Hospital and has been building a clinical ethics service in the South East Sydney local health district. Ian Kerridge is a professor of bioethics and medicine at Sydney Health Ethics, U Syd, and specialist in bone marrow transplants at Royal North Shore Hospital.
LINDA SHEAHAN: I mean, I think what’s happened as, you know, technologies developed in medical healthcare over the last ten or twenty years, that question around what we can do is more and more and more stuff, right, but us trying to then critically analyse what we should do is much harder when you’ve got so many options in front of you. And, really, that’s the space of clinical ethics.
So the main things that a clinical ethics resource should deliver, I think number one is to help make values explicit. Number two is provide a rigorous process for juggling competing values—so having a rigorous and transparent way of navigating those things, to enable clinicians to provide a defensible rationale for how they’ve made judgement calls around ethically complex decisions.
IAN KERRIDGE: I’d agree with everything that Linda's just said but, I mean, there are times where in a clinical ethics consultation you provide incredibly basic knowledge, you know, a registrar or junior consultants or so forth who comes with to you with a question saying, “Oh, look, this person is refusing health care and it seems really difficult,” and, actually, you can just say to them, “Well, what you could do first is assess their capacity for decision-making, you know, there’s a range of tools that you can use if they have capacity, here is what you should do at law, here is what you could do in other situations.” That’s really straightforward, so an ethics support services can provide knowledge that’s helpful.
It can provide people skills. You know you’re just in the middle of conflict and you’re really not sure how to get out of it and if an ethics support service says, “Look, you can actually ameliorate some of this conflict by stepping back and offering people face, right, so offering these respect and options, you know, dignity, preserving options, here is a way that you can do it.” And sometimes the other thing is that ethical support services don’t provide a clear answer at all, but at least they provide an opportunity to speak, to share, to help us deal with the really difficult parts of practice, and that in itself can be incredibly useful.
LINDA SHEAHAN: Yeah, I think that’s a good reflection. The paediatric hospitals around Australia are now, almost all have robust clinical ethics services, but in the adult setting it’s been more variable. In the paediatric setting everybody knows that they want to do what’s best for that child, so that awareness, that best is a kind of values-based term and evaluating what the best thing to do is complicated with lots of stakeholders.
I think sometimes in the adult setting we forget that adult medicine is a little bit more pragmatic about things, potentially. There’s a presumption that it’s medical decision-making and that ethics is separate to that, but that’s just forgetting what our professional obligations are, what do we think is best for this person, “How do I benefit them?” And even though clinical data a small part of that, most of the judgements that are made are values based.
IAN KERRIDGE: The other thing is that it is a little bit dangerous as well, right, because if you say to somebody, “Would you like support in thinking about the moral issues of healthcare?” at times it may suggest like you’re saying to someone, you know, “You’re rubbish at thinking through the ethical issues or you’re an unethical person.” And lacking in a bit of knowledge about the physiology of gastric juices is one thing, lacking ethics, right, that’s a really challenging idea.
Now, neither of us would say that is what clinical ethics support services are suggesting. I think the key word there is ‘support,’ so the idea of clinical ethics support, at least, the way that Linda and others here envisage it, is not to actually take over decision-making or assume responsibility from doctors or impose expertise, don’t do any of those things, but to provide a resource that can assist people doing what they do and thinking through the issues.
MIC CAVAZZINI: The paediatric case study discussed in the Congress seminar was fictional, but it reflected the tragedy of three recent stories from the UK. Charlie Gard, Alfie Evans and Isaiah Haastrup were infants with profound neurological impairment and no hope of independent survival. The parents in each case where adamant that everything be done to keep their child alive, but the doctors believed that life support would needlessly prolong suffering. This is captured in the term ‘medical futility,’ which you’ll hear a few times. The three different hospital trusts applied to the High Court to remove life support against the parents’ wishes, and permission was granted in each case.
For today’s discussion, imagine a boy of age three and half with a rare neurodegenerative condition that causes progressive paralysis. These children usually die by the age of ten, although they can be supported longer by mechanical ventilation. The boy’s parents have found out about an experimental drug. There’s no systematic research to show its effectiveness in children with this disease. But there are some published case reports showing a benefit in adults with a related and much milder condition. A doctor in the U.S. claims to have slowed disease progression in four older children, and a drug company is just starting phase 1 and 2 clinical trials.
But the $600,000 per year drug isn’t registered in Australia nor subsidised by the PBS, the pharmaceutical benefits scheme. The PBAC is the committee that decides whether a drug is cost-effective enough to warrant federal funding, but those that don’t meet this benchmark are sometimes funded within certain hospitals after deliberation by local DTCs, or Drug and Therapeutic Committees.
The child’s parents are desperate to get a hold the drug and ask the neurologist to send an application to the Special Access Scheme, through which unregistered drugs can sometimes be imported into the country.
But the doctor is uncomfortable doing so, given that the therapy is not yet proven. He is also concerned about harm to child from the regular intrathecal injections required. These target the lower spine and are often done under general anaesthetic. Headaches are common, and there’s also a chance of infection that can lead to meningitis. Possible side-effects of the drug itself include seizures and anaphylaxis. How should the doctor respond to the parents’ wishes?
The case was presented by Associate Professor Jill Sewell, paediatrician at the Royal Children’s Hospital Melbourne and Clinical Director of the Children’s Bioethics Centre. She was joined by Professor David Isaacs, Director of Ethics at the Children’s Hospital Westmead. Here they put the neurologist’s dilemma to the audience.
JILL SEWELL: So, here’s the questions: should the neurologist agree to put in an application to the Special Access Scheme, even though he doesn’t personally believe that the drug has a good chance of benefit? In some ways that’s saying, “Should the neurologist fudge the application a bit?” and “If the SAS application is not done or was refused and parents raised the money to pay for the drugs themselves, should the neurologist agree to administer it at our hospital?”
DAVID ISAACS: Jill, why don’t run with question one, your previous one? Perhaps we’ll do it by a show of hands. So, what does anyone think, should the neurologist put in the application in strongly positive terms? Nobody wants to, much. Okay, who would agree to put in the application but frame it relatively negatively? Yeah, most people. Okay, and who's not sure? All the rest, okay. Would anyone like to comment on this at this stage? Ian?
IAN KERRIDGE: To put forward an application but then turn around and say, “But I’m not going to give it,” would seem ridiculous. So, it would seem to me that the part that’s really appealing about the initial application is that, in a way, if you trust that the that the structures of decision-making work, you can make the decision about whether this drug is made available by someone else's.
So you can put forward the information and completely agree that it should be done in neutral terms, you just report the data that you have, you can address the limitations, you put it forward and then you have to be happy, though, if it comes back saying “Yes, this is something that can be given to this child,” recognising that there’s limited phase one data, but you have to think through that in advance. But all of our hospitals have hospital drug committees, directors of medical services above those drug committees, so are there clear grounds where hospitals are making these decisions as to which supplier of drug that’s not available on the PBS, is going to get funded or not?
DAVID ISAACS: Great question. In our hospital, when palivizumab would come to us I would say, “But this has been to the PBAC multiple times, and if they would drop their price it would be there for all children who need it.” And they won’t drop their price, and we said we would not pay for palivizumab because it had had its chance with the PBAC and had been knocked back. And, I mean, this comes up in oncology all the time, of course, with people wanting the latest drug and not able to afford it. Now, the difficulty comes with very rare drugs and for very rare conditions that don’t really get the chance with the PBAC.
LINDA SHEAHAN: David, I guess a quick comment on that, and that is that the idea of having hospital or district specific DTCs is exactly recognising that the PBAC processes are population-based assessments and there may be valid claims from a smaller perspective from a committee and/or individual perspective that ought to be considered with different parameters and different priorities. But there is, I guess, ethically-defensible reasons why a small scope assessment in individual cases may be appropriate.
DAVID ISAACS: Yeah. Look, I mean, I would say that makes for an inequitable approach, but the New Zealand approach is actually quite a lot better, which is they say, “If it’s on our drug list you can have it, and if it’s not, you can’t.” And that actually works quite well—I mean, the public sometimes throws their arms up and say, “Why isn’t it there?” but they can lobby for it. Yes, there was another comment in the middle there somewhere. Yeah?
KRISTYN LANGWORTHY: Yeah, I was going to say that if you’re the primary clinician who knows the family really well and the family's saying that they’re going to go and potentially bankrupt themselves to get this experimental drug, I think you have to be very clear that you either are going to give it or not before they go through the process of losing a lot of money that may or may not then get them something.
DAVID ISAACS: Okay, but, I mean, in the Charlie Gard case they crowdsourced the money and got a huge amount of money to pay for the treatment that nobody thought was ethical to give to him, so it’s not purely about the money, is it? Jill, would you like to keep going?
JILL SEWELL: I would like to hear from this group what they think about the third point, C, because this is something that we discuss quite a bit where I work. So, if this, let’s say they’re a rich family, they’ve got the money in their back pocket, forget about crowdfunding for the moment, but this is a rich family who’ve got $600,000 a year for the next two or three years. What are the equity issues about this rich child being able to have this treatment and that not-rich child not being able to have the treatment in our public hospital system?
No private hospital, at least, in Victoria, is going to give intrathecal injections to a child this sick, but one of the points is opportunity-cost for other patients. If that $600,000, if that place for an intrathecal injection in the day medical procedure unit is taken up by this child for a drug that has unproven effect, do you or should you take into account the opportunity cost for other children? And it’s just all there in the background and it has to be thought about, as well as the rights of this particular child and the needs of the family.
DAVID ISAACS: Absolutely, Jill, and it also comes in with intensive care if the child needs to be in intensive care. Greg, you wanted to make a comment?
GREG STEWART: Greg Stewart, South-Eastern Sydney. So, I’m a health manager, not a clinician, just to declare that, so I’m going to approach this from a kind of system approach, but first, in terms of C, Jill, if we made decisions on a day-to-day basis on that criteria we’d make no decisions, we’d do nothing because we face that all the time. Many times per year I’m sure there are examples where it’s very difficult to make the decision.
It seems to me that we have to start thinking about how we, as a system, think about processes that allow these decisions to be made. This is not about single decisions of individual people, it’s about how you come to a collective point, if you like, and it’s about how we get appropriate support from a variety of voices, how the ethical discourse proceeds such that you end up at a point.
LINDA SHEAHAN: This is—we’re talking about considerations of justice here, and as we know, people can defensibly come to different answers when dealing with the same questions, particularly around resource allocation. And if we’re always using loopholes then we’re not really doing due process. So, I’m a little bit hardcore about ensuring we’re using ethical process to defensibly arrive at answers when we’re asked these sorts of questions.
DAVID ISAACS: Does anyone—yeah?
HUGH DICKSON: We get this problem all the time, working in large hospitals. It’s always this issue between being the advocate for the child and providing what’s called reasonable advice to the parents in the child's interests. But the issue is to get consent, to get approval from your ethics committee, and if you’re going to provide this, people are going to pay for the drug, then it’s worth putting the drug in effectively and safely and to monitor the effects. Because it may be effective and there’s no reason, if they’re going to raise the money, for the child not to be involved in the trial so that you actually add to the level of knowledge about this so other people don’t go down the same path.
There’s a moral issue of what this neurologist does, if he doesn’t want to support the family he should tell them. Maybe this neurologist needs to think about shifting the care of the patient to another neurologist who might be more ... You don’t fudge applications, that’s the other thing, you don’t frame them in negative ways, you really should try and resist doing that sort of thing.
DAVID ISAACS: Okay, you’ve raised several issues there, one of them is that you should do it on the best interests of the child. But then you said about getting consent from the parents. So, does consent from the parents trump best interests of the child? I see a few people shaking their heads, so what comes paramount here, then? Cameron, do you want to tell us from a legal point of view what you think comes paramount?
CAMERON STEWART: Sure. Essentially, best interest of the child is paramount. It’s negotiated through the relationship of the consent that the doctors and the treatment team have with the parents. But the touchstone is not what the parents want, or consent to, it’s the best interests of the child. So, in offering choices to the parent, that’s where you frame up those choices.
MIC CAVAZZINI: That was panel member Professor Cameron Stewart. He is Pro-Dean at Sydney Law School and Co-Director of the Centre for Health Governance, Law and Ethics. In a moment you’ll also hear from Professor Paul Komesaroff, endocrinologist at the Alfred Hospital and Director of the Centre for Ethics in Medicine and Society.
DAVID ISAACS: Thank you. And so from a legal point of view, at least, it’s best interests. Are there any other interests that we should bring in? I mean, we say best interests of the child, does that trump everything else, then? Are there any other issues we should be considering at this point? At the back there.
JACQUELINE STACK: Jacqui Stack from South-West Sydney. Look, I agree that the best interests of the child should be paramount, however, this is a very particular circumstance where you’ve got a family whose child is going to die. And you’re in a very important therapeutic relationship with that child and that family whose child is going to die. So, for all that you need to put the child's interests first you must also consider the family and the importance of the relationship that you have with them over the long term.
DAVID ISAACS: Thank you. Anyone disagree with that, or ... Paul Komesaroff, wanted to make a comment?
PAUL KOMESAROFF: I think I’d formulate the question a bit differently, I don’t think this is about the drug, I think it’s about helping the parents grieve and providing support for the parents, so that’s where we should be focussing here. This child is about to die, and the parents are understandably distressed, that’s where we should be focussing our activity. Now, it could be that there are issues in relation to the drug, clearly they want a miracle cure, it’s very unlikely that that will happen, and we’ll have to negotiate our way through that. You know, I wouldn’t object to putting in an application in fair and objective terms, it'll probably be rejected, but the parents can then at least have the comfort that we’re on their side and that we’re helping support them through the process.
DAVID ISAACS: So I have a slight problem with that, because if you don’t believe that the drug's going to work and you’re giving the child multiple intrathecal injections, are you not colluding with the parents wanting a miracle at the cost of the child, so should we ... ? Yeah, please.
ANTHOULA AMOHAMUDALLY: My name's Anthoula Amohamudally. So, the word we haven’t heard is hope. I think collusion is a strong, loaded term, and for me, if you’re going to go ahead and put the application there’s a degree of hope that I would have, as the neurologist. And I’m fostering their hope but it’s also an opportunity to, because if it gets rejected there'll be something else they’ll pursue, that’s the reality. But it’s how we handle their hope, and, in turn, when the child dies, it’s what the parents live with beyond that.
DAVID ISAACS: OK, if parents are hoping for this drug to do miracles for their child and you’re pretty sure it won’t, and there is some cost to this child, and cost to the healthcare system, then do we do all this for hope?
IAN KERRIDGE: But, David, hope has a subject and an object, so I think it would be very reasonable for a clinician, and I’m sure lots of people in this room have done that, which is to say, “Look, we can’t hope that with this drug you’ll be cured of your disease, but we can hope for relief of your symptoms, we can hope for delay in progression, so you can hope for something else, you can hope for a good death.” There’s different things you can hope for and not just cure.
DAVID ISAACS: In the blue and white shirt …
ROB VAN DEN BERG: Rob van den Berg from Adelaide. So, in my understanding, this treatment we don’t think is effective. But it is effective in terms of managing the patient's expectations and helping to deal with dying, and we should be managing the family in any shape or form. I mean, you do drug trials where you randomise people to a placebo or an active arm. In this situation you’re basically randomising someone to a placebo, in your judgement. I don’t see that there’s any ethical problem if you’re administering a drug that’s very expensive, but we don’t think is going to be of benefit. I think you'd be in a much more difficult place if you’re administering a drug that you knew to be effective but not available within your system.
DAVID ISAACS: I see a few people nodding. Go, Cameron, please.
CAMERON STEWART: Could I make another point, too? I think all this conversation shows us that these assessments of futility are subjective, I mean, there’s a big push to talk about futility as if it’s an objective criterion, there’s a lot of scholarship on this. Larry Schneiderman, for example, has pushed this idea of an objective assessment in futility, but even when you know the facts, and in this case we don’t, but even if you know the facts you’ve still got a question about whether a two per cent chance is worth it, a three per cent chance, it’s all about another form of assessment, which is subjective, it’s not an objective test.
DAVID ISAACS: Well, there was this intensivist who came up with the idea of futility, and sometimes even ventilating a child who's drowned and is braindead for a day or two can help the parents in the grieving process, and we often do it in intensive care units. And yes, it’s futile in any objective sense, but it isn’t for the parents. There’s a comment at the back and then here at the front.
AMIRA MAHBOUB: My opinion is if the initial neurologist thought that it was of no benefit, so I would actually put forward why not a second or a third neurological opinion. If all of them had a same opinion that it wasn’t going to be of any effect, that would probably actually help the parents accept that, you know?
DAVID ISAACS: Okay. Do you see any problem with second opinions?
AMIRA MAHBOUB: No, I don't, at all.
DAVID ISAACS: Does anyone see any problems with second opinions? Because interestingly, I mean, this case is not a real case, but it’s a case based on Charlie Gard, and there was a problem with second opinions, in that if you got a second opinion your own country, and if you went overseas, particularly if you were going to pay for it, you got a very different opinion.
AMIRA MAHBOUB: Well, we have that Ryan's Law thing in Queensland, don’t we, where a second opinion is the norm, I mean, it’s their right, it’s a parent's right, so ...
DAVID ISAACS: I’m not talking against second opinions in general, but you can get the second opinion you want. I think we’ll go back—thank you very much for that comment. So, look, I’m just going so sum up one or two things from this. I think this case brings up a lot of really interesting issues. One of them is how do we make decisions, some people have talked about the harm principle, looking at what’s truly harmful to the child and we should never be doing it. Lynn Gillam has championed a really interesting concept called the Zone of Parental Discretion for children where she’s saying, “Look, most of the time we allow parents to make decisions. And quite rightly so, because they should be ones to be trusted to make the best decisions for their children. But there are just some that shouldn’t fall within their purview, and those that when the treatment has very little chance of success and is very burdensome on the child, and does this fall into that category, we should be thinking to ourselves, perhaps.”
So, thank you very much, Jill, and thanks everyone.
MIC CAVAZZINI: The second case study discussed at Congress was drawn from a real-life referral to clinical ethics support. This was a 65-year-old man identified as JW. He first presented a year ago reporting blood in the urine. Investigations revealed a large adenocarcinoma in the bladder and another tumour in the sigmoid colon. The tumours would require urgent resection, but three days before surgery JW decided not to go ahead with the procedure and doctors couldn’t convince him to change his mind.
Four months later JW re-presented to emergency with blood not just in the urine but also from the rectum. He had lost 24 kilograms and scans showed that the tumors had grown to invade the ureter and caecum.
JW had extensive parts of the bladder and small intestine surgically removed, followed by ten rocky days in intensive care. He was to be left with an opening in his intestine where a colostomy bag could be attached. But this stoma was dying off, and JW went back to theatre several times.
At three weeks there was leakage of bowel contents through his midline wounds. Scans confirmed there were abnormal connections or fistulae between parts of the bowel, and for the next eight months, JW stayed in hospital with very high care needs. He was producing huge volumes of urine that could only be drained by insertion of a catheter directly into his kidney. With all this fluid loss, JW was on a life-sustaining saline drip of five litres a day. Total Parenteral Nutrition, or TPN, was also provided intravenously and blood pressure was unstable. The fistulae weren’t healing and along with his stoma required three hours of wound care a day. There were recurrent infections and sepsis requiring antibiotics.
Another biopsy showed that the cancer had returned. Doctors explained to JW and his family that further surgery would be futile and suggested a focus on palliative management. Three different nursing homes said that JW’s medical needs were beyond them, so he remained an inpatient. He wanted to continue treatment and expressed a strong religious faith that he would be healed. But JW’s understanding of his condition and the surgical journey were poor, and he chose not to involve his family in decision-making. This is where we take up JW’s case.
He now remains in bed for most of his waking hours and he’s become more withdrawn. Palliative care staff are anticipating the next acute event and make a referral with questions about what limits to medical care they can ethically set down. Linda Sheahan presents the case and Paul Komesaroff moderates the discussion.
LINDA SHEAHAN: So, the first question is JW wants to live and says he wants to continue all treatments that are offered to him. Presume he’s a capable decision-maker. Should we continue to provide IV fluid to JW? So, the options; A is yes, we should, life sustaining treatment should not be withdrawn; B, yes, we should, if he wants to continue; C, no, it’s essentially a futile treatment, and D, not sure.
PAUL KOMESAROFF: Cameron, would you like to comment? Are all these choices available to us equally, under law?
CAMERON STEWART: They are, but I think the futile pathway's a bit more difficult, so you might say, “Oh, it’s futile because he’s going to die.” Yes, but it’s also keeping him comfortable and he does have capacity and he’s able to still have conversations with his family and other things, so just because something's difficult doesn’t mean that it’s futile. So, we might be going, “Oh, it’s a lot of care, it’s a lot of fluid that we got to take care of.”
I mean, there’s a case called JT's Case from Canberra, where there was a sort of untreatable mental illness, he was a forensic patient, and he kept throwing himself down sets of stairs and he wouldn’t eat, and this would happen all the time. And John Paul II would appear in ghost form and tell him not to eat and they would have to force-feed him, and so at about the eighth time this had happened they sort of said, “Look, I think we’ve done it enough,” and they asked the court of say that it was okay for them not to force-feed him anymore. And the judge said, “Well, look, it’s difficult, but the treatment itself is working, you know, what’s the point of artificial nutrition and hydration? It’s to keep you fed and hydrated. Does it work? Yes, it does.” So, I think this is very similar. Again, futility is a subjective assessment here, so I think it would be tough, especially if the person is asking for it and it’s not very expensive, it’s not that difficult.
LINDA SHEAHAN: So, I guess this goes to the ceiling of care question and whether or not we want to get too deep into this we’ll see. But in your opinion, which of these opinions is the most appropriate ceiling of care? So, I’m going to presume they’re in escalating order.
PAUL KOMESAROFF: Could I just slightly reformulate the question, leave out the ceiling of care and just say which of these things would you do, is that okay?
LINDA SHEAHAN: Perfect.
PAUL KOMESAROFF: And then we can have a conversation about whether there is such a concept as ceiling of care. So, who would do analgesia? Okay, basically everyone. High volume IV fluid replacement that’s life sustaining? So fewer people. Antibiotics for treatment of sepsis? Right, a relatively small number, but still a few. Albumin and blood product replacement? A small number now. TPN? No one. Surgery? And HDU or ICU? Okay. Would anyone like to comment? And just say your name first, if you don’t mind?
ROBYN TOOMATH: So Robyn Toomath from Auckland. I think that the effort's all going in the wrong direction. This is a guy who needs to be counselled over and over and over again, if need be. He needs to be supported to make decisions to achieve the best quality of life he can have. We shouldn’t be talking about limits to treatment or ceilings of care, we should be talking about goals of care. Somebody needs to be honest and say, “You are not going to survive this illness, I estimate that you will have three or six months left, let’s talk about how you can live these remaining three or six months with the best quality of life you can achieve.”
PAUL KOMESAROFF: Okay, thank you. Yup?
HUGH DICKSON: Yeah, I just—what I don’t know with this patient is, so he looks like he’s one of those people who can’t survive outside a hospital environment, and we’re getting more and more of that type of patient. The question is how long is it for him to survive? What’s he going to die from? That’s the underlying issue, because withholding some of these treatments means he’s going to die from, say, cardiac failure because he’s profoundly anaemic. Is that what you want?
PAUL KOMESAROFF: Thank you. I think there’s a comment down here?
ANTHOULA AMOHAMUDALLY: It’s Anthoula Amohamudally again. So I think the cultural safety element to this is vital, because his decision-making may not be driven by health literacy. Is he orthodox?
PAUL KOMESAROFF: Strong religious beliefs, we heard that.
ANTHOULA AMOHAMUDALLY: He does have strong, and you’ve highlighted that. I think it would be important to try and understand what the drivers are for him. Because what we frame as quality of life may not be actually be what’s driving him to survive. I think it would be helpful to get counsel from a member of his religious community, that would be my suggestion. Because I’ve been in this situation many, many times and it doesn’t matter how many times we talk about goals of care or how many times we try and explain pathophysiology of someone is heading towards the end of their life, at the end of the day the reason that they want to live is not related to any of those factors.
PAUL KOMESAROFF: Okay, thanks, Anthoula. A comment behind?
ROB VAN DEN BERG: I would agree entirely. It’s not about making him understand, it’s making us understand him. We have to understand him to be able to help him, we have knowledge about medical outcomes, if we understand him we can then assist him in terms of what we can reasonably achieve. I mean, we have been doing things to this man for nine months now, on what basis are you going to stop doing things? I don’t have the authority or the moral ethical basis to say “I can judge for this person what I’m not going to do, given all the things we’ve been doing in the past.” I need to have a conversation with him, I need to understand him. If after that conversation we agree that this is what we’re not going to do, that’s fine. Until that conversation is had the trajectory is we’ve done everything, so what’s changed?
PAUL KOMESAROFF: Alright, thank you. Cameron, did you want to say something?
CAMERON STEWART: I was just going to say, I mean, a lot of this is dependent on, you know, we were talking about goals of care. So if the son was coming from Perth tomorrow maybe that would change things a little bit. It’s about, I want to see my son before I die, so maybe you'd be prepared to do some of the treatments that are further up the list just to get him to the point where he can finalise the things that he needs to get done.
PAUL KOMESAROFF: Yeah, so context is everything. So, Linda, would you like to comment on how you would approach this, and then we’ll go onto the next question?
LINDA SHEAHAN: I mean, I confess I put the palliative care hat on when I asked this question rather than the clinical ethics hat. It’s always go back to the patient and find out what are their goals and preferences and how is this particular intervention trying to achieve those particular goods. And you always wonder how well those conversations have been conducted and whether, regardless of health literacy and religion whether or not we can come to some sort of common space in trying to facilitate the next steps. May I just ask Cameron one quick question?
CAMERON STEWART: Sure
LINDA SHEAHAN: So I guess one of the tensions from a clinical ethics perspective we’re trying to tease out here was whether or not there’s any difference legally between withholding certain types of treatments and/or withdrawing certain types of treatments. So because he was already on life-sustaining fluid it was a withdrawal question. But if it was a withholding question which was already sort of made around not escalating therapies, what’s the legal status there, or the distinction?
CAMERON STEWART: The legal status in Queensland and Western Australia, South Australia and Victoria, it doesn’t matter at all, it makes no legal difference at all in terms of causing death, it’s all considered not to cause death. In the Commonwealth states it probably is not considered to make much of a difference either. But we don’t have a case that talks about that yet. Most of us would assume that it’s Bland's Case that applies, and we call it an omission even though all of us are really troubled by the acts and omissions distinction and how it works here.
PAUL KOMESAROFF: And presumably that would also apply to the specific instance where he’s attached to a machine and to withdraw that you’ve actually physically got to turn off the machine?
CAMERON STEWART: Yes. But, again, there’s been no specific consideration of that under our Crimes Act. When a patient's competent obviously their assessment of their best interests is really authoritative, and we have to respect that. But they can’t demand a treatment that you don’t honestly believe should be offered. Whilst the Medicare Act says that everyone can expect treatment, that’s not a legal right, so there’s no demand for treatments. Patients have a right to choose from the treatments that are offered, so the question about what is offered then is left up to the medical profession and there’s very few cases where courts would ever look at that.
PAUL KOMESAROFF: David, do you want to make a quick comment
DAVID ISAACS: Yeah, I do, because is it ethically the same? I mean, legally it’s the same, okay, but ethicists often tell us it’s ethically the same, but it doesn’t feel the same for us as clinicians to say when I’m going to take someone off the ventilator rather than say we’re never going to put them on the ventilator.
PAUL KOMESAROFF: Ian, can you quickly tell us whether it’s ethically the same? Can we go onto question two now, I know there were some other comments, but I’d like to just move onto a different issue. And we’re not going to vote on this, but if you don’t mind reading it out?
LINDA SHEAHAN: So I guess the question put to us was how should we understand quality of life and the burdens of treatment in this context? JW has a poor quality of life and his treatment burden is unacceptable; JW believes he has an acceptable quality of life and that is what matters; or not sure?
PAUL KOMESAROFF: So, Ian, could you define for us the term quality of life?
DAVID ISAACS: You get the easy questions, Ian.
PAUL KOMESAROFF: And then I’d be really interested in the comments of everyone here.
IAN KERRIDGE: Look, I think the fact that there’s more than 1,500 different measures of quality of life tells us something about the complexity of the idea. And it’s certainly more than functional capacity and the absence of pain, which is often how the more community-based or population-based measures of quality of life are. The key thing, I think, is coming to agreement about what it is that gives a life quality for a particular person and then who's making that judgement and how much those judgements are adhered to by others or honoured by others or understood by others, so I think that’s more the issue.
PAUL KOMESAROFF: And, David, do you use this concept in your practice?
DAVID ISAACS: So, of course, children often can’t tell you what their quality of life is going to be, and the question then comes up ... I’ll give you an example. So, when a child's born with spinal muscular atrophy, in the days before nusinersen was around, there was the possibility of putting them on long-term ventilation knowing that they would be totally paralysed and intellectually normal by the time they were one, and almost no one in Australia would do that. But it is done in some countries. I mean, Henry Killum described this very well, that just imagine you’re lying in bed and there’s a crease that’s pressing into your back and you can’t move to get out of the way of it and you can’t tell anyone. Is it presumptuous for us to try and judge what the quality of life of a child would be like? Or is it ethically mandatory for us to do that? And we would argue that you must.
PAUL KOMESAROFF: Okay, thank you. Over to you.
ROB VAN DEN BERG: I’ve encountered this similar scenario in a number of occasions but it’s in the context of someone who every clinician would judge as having a very poor quality of life and neurologically has severe damage, but the family members are completely adamant that they wish the sustained therapies. And once they’ve been on that track for a period of time and the family cannot move from that belief system no matter what you do, there’s little opinion other than to continue therapy, because who are we to judge what is quality of life?
If the daughter says, “Look, she blinked, she’s talking to me,” I mean, legally, morally, I don’t think we can do any different. We’re making judgements about what the probability of an outcome is or we’re making a judgement about what we judge to be the quality of that outcome—they are subjective, and that’s what’s being referred to. I think we’ve got to stop talking about futility as if we know what it is.
PAUL KOMESAROFF: Thank you. Yes, at the back?
STEVEN BUCKLEY: Steven Buckley in Sydney. There’s considerable research into the locked-in syndrome in Belgium and France, and they roughly have the same psychology as everybody else and the same percentage of locked-in people think that they’re having the best time of their lives as for a room full of physicians of the same percentage are depressed.
PAUL KOMESAROFF: That’s a great comment. Can I just ask the panel members for some final comments? Jill would you like to add anything?
JILL SEWELL: Look I just want to make a point that perhaps I should’ve made before, and that is we’ve been talking about it from our own perspective as physicians, but it’s very often the nurses who carry the distress of daily caring for patients in this sort of state. And it’s something that we often talk about with children—the moral distress that the nurses feel in some situations, so let’s keep considering their perspective as well as our own perspective when we think this through.
DAVID ISAACS: I quite agree, Jill. I’ve only got a very brief point, and that is, when we’re talking about quality of life, we didn’t really go into all the aspects of quality of life. But by and large if you talk to children with disability they rate the quality of their life much higher than their parents who rate it higher than the physicians and the nurses. So we tend to underrate what the child thinks of their quality of life.
PAUL KOMESAROFF: Okay, thank you. Cameron, you mentioned best interests before, and we’re talking about quality of life, are the two connected as legal concepts?
CAMERON STEWART: They are. When the patient's not competent then that’s when the best interests really comes forward to the fore. But then the patient still might’ve been able to speak about that through something like an instructional directive or an advanced care directive which limits treatment, so there'd be other ways for the patient to speak. Most of the time, though, we don’t have those, and 99 per cent of the time they don’t exist, so then we would go to, again, this qualitative assessment. So, yes, qualitative assessments are really important but they’re not the only thing, we have to take into account the wishes of the patient. The more competent the patient is the more the subjective wishes of the patient need to be taken into account.
And I’d just go back to autonomy and encourage people to look into this. There’s a whole heap of new laws that are coming in around Australia, looking at substitute decision-making, advanced-care directives—all this stuff is coming through. So please get yourself up to speed with all the new laws that are coming in.
MIC CAVAZZINI: Many thanks to all the contributors to this session who agreed to share it for Pomegranate Health. The panellists were Jill Sewell, David Isaacs, Cameron Stewart, Paul Komesaroff, Linda Sheahan and Ian Kerridge. From the audience you heard Kristyn Langworthy, Greg Stewart, Hugh Dickson, Jacqueline Stack, Anthoula Amohamudally, Rob Vandenberg, Amira Mahboub, Robyn Toomath and Steven Buckley.
The views expressed are their own and may not represent those of the Royal Australasian College of Physicians. Feel free to continue the discussion in the comments section for this episode. You’ll find this at the website racp.edu.au/podcast.
There you’ll find an excellent interpretation of the Charlie Gard case and the ‘zone of parental discretion,’ published in the Internal Medicine Journal. You can learn more about the work of the College Ethics Committee, such as their upcoming Guidelines for Ethical Relationships with Industry. There are also great resources like the NHMRC Clinical Ethics Capacity Building Resource Manual, and links to clinical ethics support in New Zealand and Australia. And to find other inspiring lectures from Congress, have a look at the College Youtube channel, RACP1938.
That’s all for today’s show. Thanks for listening, I’m Mic Cavazzini.