Ep3: Law at End-of-Life
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In the final of our three-part series on end-of-life decision-making, we're integrating perspectives from the law.
For dying patients, their families, and their medical staff, the majority of decisions are reached without contention. But law in this field is complex, and varies by jurisdiction. As a result, doctors may possess knowledge gaps around end-of-life care. This episode features interviews with Prof Ben White (QUT) and A/Prof Colin Gavaghan (University of Otago). Links to resources mentioned on the show and other tools for continuing professional development (CPD) are provided below. View the RACP’s curated collection on end-of-life care for an expanded guide to CPD tools.
Fellows of the RACP can claim points for listening and further reading on this topic via MyCPD.
RACP Position Statements and Media
Improving Care at the End of Life: Our Roles and Responsibilities [RACP]
Fact Sheet: Where the College Stands on End-of-Life Care [RACP]
Policy and Advocacy Priorities: End of Life [RACP]
Books and Journal Articles
Doctors’ Knowledge of the Law on Withholding and Withdrawing Lifesustaining Medical Treatment [MJA]
Causing Death and Saving Lives [Penguin]
Elder Law in New Zealand [Thomson Reuters]
Advanced Care Planning e-Learning and Workshop [Respecting Patient Choices Australia]
Our Voice (To Tatou Reo): Advanced Care Planning e-Learning [ACP New Zealand]
Palliative Care: Getting Started [Centre for Palliative Care]
Legal Aspects of Ageing [Victorian Department of Human Services]
Advance Care Planning: A Guide for the New Zealand Health Care Workforce [NZ Ministry of Health]
New Zealand Palliative Care Strategy [NZ Ministry of Health]
ANZICS Statement on Care and Decision-Making at the End of Life for the Critically Ill [ANZICS]
End of Life Law in Australia [Australian Centre for Health Law Research]
The Law of Advanced Care Planning in Australia [ACP Australia]
Be My Voice [ACT Government]
End of Life Decisions, the Law, and Clinical Practice [NSW Health]
Advanced Care Planning for Northern Territorians [NT Government]
End-of-Life Care: Legal Framework and Clinical Considerations [QLD Health]
Clinical Resources for Advanced Care Directives [SA Health]
Advanced Care Planning for Healthy Dying [TAS Government]
Advanced Care Directives: The Legal Issues [VIC Health]
Advance Health Directives: Resources for Health Professionals [WA Health]
This episode was produced by Anne Fredrickson, with music from Lucky Dragons (“Open Melody”), Studio Noir (“Clarine Seymour”), BOPD (“New England Is Interesting”), and Satellite Ensemble (“Agnes”); photo by Julia Manzerova (via Flickr).
Editorial feedback was provided by RACP Fellows Dr Bruce Foggo, Dr Martina Moorkamp, Dr Christian Lueck and Dr Marie-Louise Stokes.
BEN WHITE: Sometimes when people think about law, and sometimes when doctors think about law, they think of lawyers—and lawyers sort of, you know, beavering away behind closed doors to come up with complex legal issues. But really, law is about community values. And so because law is a reflection of community values, it's appropriate it has a role in end-of-life decision-making. It's not just questions of medicine that are involved when decisions about end-of-life treatment are made; there are significant value judgements. And those are ones for which community views and community wishes are central.
CAMILLE MERCEP: From the RACP, this is Pomegranate—a medical podcast by physicians for physicians.
In this, the final of our three part series on end-of-life decision-making, we're integrating perspectives from the law.
High profile court cases on euthanasia dominate headlines. For dying patients, their families, and their medical staff, the majority of decisions are reached without contention. But law in this field is complex, and varies by jurisdiction. As a result, doctors may possess knowledge gaps around end-of-life care which place them and their patients at risk—legally and physically.
Professor Ben White teaches at the Queensland University of Technology School Of Law, where he directs the Australian Centre for Health-Law Research. Colin Gavaghan is Associate Professor in the Faculty of Law at the University of Otago, and heads the Centre for Law and Policy in Emerging Technologies. In this episode they review the legal frameworks for end-of-life care in Australia and New Zealand, and how they differ when a patient lacks capacity. They also debate a fundamental question: why does law play a role at end-of-life?
BEN WHITE: Ben White's my name. I'm the director of the Australian Centre for Health Law Research at the Faculty of Law at QUT.
The focus of my research is on optimal end-of-life care for patients and their families. That's what drives my interest, my passion in this field. I'm interested in good end-of-life care, and I think law has a role to play.
COLIN GAVAGHAN: I'm Colin Gavaghan, I'm an associate professor at the Faculty of Law at the University of Otago, which is in Dunedin.
My interest in this field started back in the early 90s. When I was an undergraduate student at the University of Glasgow, I discovered a book that—probably it sounds a bit melodramatic—but probably changed my life in some ways. It was a book called Causing Death and Saving Lives, and it's by an English philosopher called Jonathon Glover. And what Glover does in a really clear, nice, accessible way, is to kind of explore some of the categories and some of the distinctions that we apply to end-of-life choices. So for instance: why do we feel so differently about killing from about “letting die?” In a kind of philosopher's perspective he asks, "What's so different about these situations, and are there differences that really ought to be reflected in law?”
That really got me thinking about this from a kind of intellectual point of view.
BEN WHITE: Law protects rights. And the rights here include the right to self-determination, so to refuse treatment. But there are also rights to have appropriate decisions made by substitute decision-makers, and by doctors too.
I think law also has an important role to play in facilitating dispute resolution. So sometimes there's a dispute that can't be solved, there's intractable disagreement. And our society has said when that happens one of the vehicles to resolve that is recourse to law. And a final reason why I think law matters and why law has a role in end-of-life care is that it exists—it's there, it regulates medical practice. I think engaging with it is important because that's the nature of law.
COLIN GAVAGHAN: The situation in New Zealand, the legal situation, is very much influenced by English law in particular—so all of our categories are the same. We have a prohibition, for example, in assisting suicide, but we do have an allowance for other kinds of decisions and other kind of measures that would result in the end of somebody's life.
New Zealand is very much like Scotland as well, in the sense that it's a small country and not a very litigious one. So we don’t have a huge amount of case law to go on. We don’t have very many judges’ decisions to clarify in some cases precisely what the law would be. So that creates an interesting situation for lawyers and for doctors because quite often we're operating in kind of slightly murky zones with regard to legality.
BEN WHITE: We recently published a study in the Medical Journal of Australia looking at doctor's knowledge of law relating to end-of-life decision-making, for adults who lacked decision-making capacity. The partner organisations who supported this ARC-funded research were the seven guardianship bodies in the three states—Victoria, New South Wales, and Queensland—which we looked at.
Four key points that emerged from that study. The first is that doctors do play important legal roles at the end-of-life—not just clinical roles in terms of providing care. There are decisions about when treatment should stop, and does the decision-maker have legal authority to make that decision—or if it's an advance directive, does it have to be followed?
The second point is that despite that role there are significant knowledge gaps in law. We asked a series of seven questions about law, and across the sample the result was about about three and a quarter—so less than half the questions were answered correctly and known.
Thirdly, I think this can have serious consequences for patients. Treatment can be stopped or given unlawfully outside of the law. And of course for doctors themselves.
Finally we concluded this pointed to the need for more education, especially CPD training, to address these knowledge gaps.
COLIN GAVAGHAN: What I would like most to see in this area is an approach that is consistent as between different end-of-life decisions—but also one that keeps the focus on the most important issues. I think everyone's concerned about respecting patient choice at the end of life, but we’ve got other considerations as well. I mean, it's very valid to be concerned about patients’ being pressured or coerced into making decisions. It's very valid to make sure that patients are properly informed about their prognosis and about the range of options available to them. It's very important to satisfy ourselves that the patient is mentally competent and not suffering from some treatable mental disorder—transient depression or something like that.
But the thing is that this is equally important across the whole range of end-of-life choices—those that we currently allow and those that we currently prohibit. It's not obvious to me that a Jehovah's Witness declining a blood infusion is at less threat of being coerced than a dying patient who wants active assistance in the form of a lethal injection. The same kinds of dangers and the same kinds of risks seem to present in all of those cases. The kind of ad hoc development of these fairly arbitrary lines in the sand isn't really offering either the choices, or the protection, perhaps, that patients really need in this context.
BEN WHITE: We asked a range of questions on our survey about the law that governs end-of-life decision-making—so withholding life sustaining treatment for adults who lack capacity.
There were questions looking at the powers of substitute decision-makers, when could the substitute decision-makers refuse life sustaining treatment? And there were also questions about advanced directives—when did advance directives have to be followed, in what circumstances would they be valid?
And one of the challenges in developing a survey instrument that was legally accurate across all three states was that the law is different in each of those three states. So for example, there were some questions where the wording was exactly the same across all three states, but the true or false answer was actually different depending on where you lived. One of the challenges of looking across the country when you're talking about law at the end-of-life is the variation. There is a significant difference across each of the three states that we looked at, and indeed across the rest of the country.
At a macro level I guess it's possible to draw out some broad themes as to what the law is: if there's an advance directive which is valid and applies to the situation that will generally govern treatment. And if not, the question then is "Who is going to be the substitute decision maker who will step in the shoes of the adult who lacks capacity?" That's generally going to be a tribunal-appointed guardian, or an enduring guardian appointed by the adult, or an enduring attorney—there's different terminology across the state.
Mostly all jurisdictions have a default decision-maker—a person responsible—or a statutory health attorney who can step in if there's no specific decision-maker appointed. So there is, I guess, some overarching similarity across the broad framework, but as soon as you start to scratch beneath the surface, as soon as you start to drill down to particular decisions and how things might work—for example, when decisions can be made, what powers the decision-makers have, when are advance directives binding—that's when it gets tricky.
COLIN GAVAGHAN: The status of advance directives in New Zealand, legally speaking, is I have to say a little bit unclear. We have a provision in our Code of Health Consumers’ Rights that says advance directives have the same status as refusals in common law.
Now, as a non-lawyer you'll be wondering what that means—as a lawyer, so am I.
It's not entirely clear what “in common law" means. It means what's happened in case law—what the courts have decided. But the courts haven't decided anything about advance directives in New Zealand. We really aren't entirely sure what to make of that.
What I can say about them is that they have a role to play. They can be very helpful in a situation where a patient has something in particular that they're very keen to avoid. But when you move away from very simple decisions about straightforward treatments it does get trickier. And there's a danger that people either express in their advance directive preferences that are too vague. On the other hand they can be too specific, and people can provide lists of precisely what they would and wouldn't want in very specific situations. But then the situation in which you find yourself may not fit into any of those categories exactly. So it can be difficult.
Some of the most promising advance directives and advance statements that I've seen didn’t really make any attempt to be legally binding at all. They actually included a more board statement of the patient's values and priorities and hopes. So if you're the kind of person that worries a great deal about your independence, for example, you can set that down in this document. If you're someone that's more concerned about physical comfort, likewise. Now that won't be legally binding, because it's far too wide in scope. But it could genuinely help inform a decision if one ever has to be made when you're not in a position to make it.
BEN WHITE: I think criticisms of advance directives overlook at least two key issues. The first is that most of the criticisms of advance directives try to conceptualise them as making very specific decisions about "Yes I want this medical treatment" or "No I don’t". But the reality is that most advance directives also have information about goals of treatment, about quality of life, about the person's values—which are very, very important.
The second I think is to ask what the alternative is. The argument put forward is that we shouldn’t regard advance directives as binding, because there's too many risks or issues associated with that. But where that leads us to is a world where advance directives are legally binding…only if the treating doctor happens to agree.
And people are different. People have different views as to how they want their end-of-life to happen. And to say that there is one right view or that “treatment must be accepted in this instance" I think is dangerous, and inconsistent with individual choice.
This is not to say there aren’t challenges and difficulties with advance directives, but I think the better response is to acknowledge those problems, acknowledge those challenges, and engage with them. And indeed that's broadly what we have in Australia—we have a framework where advance directives are legally binding, and there are limits and safeguards when it might not be regarded as appropriate for those advance directives to hold.
COLIN GAVAGHAN: I've actually contributed chapters now to two books on elder law. It seems to be probably the biggest growth area in academic law. And it's not surprising because the demographics are such that the populations in the developed world are getting considerably older.
The first thing I'd probably flag for people working with elderly populations is the question of competence, because the patient's ability to make a choice is very much dependent on them possessing the requisite mental capacities to do so. In New Zealand, we don’t have a very clear definition for all purposes of what “mental competence" consists of. But broadly speaking, what we're looking for is that the patient can understand the information that's being conveyed to them, they can understand the nature of the choice they're faced with and what the outcomes are likely to be—and that they can communicate that to us in a meaningful way.
When you're dealing with elderly patients I think one of the concerns is that their mental competence may be somewhat fluid and fluctuating. If you have someone with the early stages of dementia, for example, they may have good days and bad days.
So what I'd say is from a legal point of view, capacity might be fluctuating, and it's not a once-and-for-all decision. Because the other important thing to think about is that someone may lack the mental capacities to make a really important technical complicated decision about a lifesaving treatment, but they may very well retain sufficient capacity to make decisions about what they want to wear that day, or what they want for lunch. So it's not a once-and-for-all decision.
Patients can also be helped to develop the capacities to make decisions. I mean, it would be a mistake to write someone off because they're struggling to understand and we're having to work with them to try and help them to do so. It's also worth bearing in mind that in New Zealand law and in the UK and in Australia there's a presumption—a legal presumption—that a patient is competent. So that should be your starting position.
The second thing I think I'd say about elder patients is about their own families, because very often that's going to be an important consideration for them. The situation we have in law is that families by-and-large—relatives, next of kin—cannot make decisions for a patient unless they have been specifically appointed in that role. So they can either be appointed as an enduring power of attorney by the patient herself, or they can be appointed as a welfare guardian by the court. In either of these two situations the family member, or whoever it might be, has limited powers to make decisions on the patient's behalf.
But even then it's limited: they can’t demand a patient be given treatment if the medical staff form the impression that the treatment would be futile or overly burdensome. And equally, they can't demand the treatment be discontinued if it's a standard treatment that's intended to save the patient's life. So the role of families is something we're going to have to think very hard about.
BEN WHITE: Health departments, generally in most states, have some kind of policy which deals with end-of-life decision-making, and a majority of them have specific sections
dealing with law. For example, NSW Health has released a website which deals with law at the end-of-life which tackles some of these issues.
There's human resources as well. Most hospitals have access to a hospital lawyer or other support like that. Medical defence organisations are often a good source of information about specific queries. And indeed one of the things we looked at in our survey was the extent to which doctors ask other doctors about law at the end-of-life. And that was interesting because one of the concerns we had was if there are gaps in legal knowledge that doctors have…asking other doctors, there's risks in relying on that information.
COLIN GAVAGHAN: The hospital here in Dunedin has a bioethics centre adjacent to it, and I know that our medical staff has had recourse to get advice from these people when they face difficult decisions. But depending on where you work there may be an in-house legal advisor of some sort that you could approach and seek help from. I think it's very much context-dependent.
Certainly if you feel you're facing a decision that may be getting quite close to the bounds of either ethical or legal problems there should be mechanisms in place at your place of work to assure yourself that what you're doing is actually appropriate from both of these perspectives.
In Glasgow I spent ten years teaching a masters’ degree to medical practitioners, and I can truthfully say I learnt as much from them as they did from me…although the money all went in one direction. That's very, very important for us to listen to because lawyers can get a very skewed and jaundiced view of what these kind of situations are like. Because really the situation only lands with us when it's gone really terribly wrong. So we tend to see the worse cases of miscommunication.
But it's very valuable for us to see what happens in the more typical cases so that we don’t end up proposing some kind of law change that responds only to a very small minority.
BEN WHITE: One of the interesting findings from this research was that experience can change the level of knowledge of doctors. So those involved in making these end-of-life decisions more frequently were likely to have better legal knowledge. And particularly important is that recent CPD training within the last year was predictive of a high level of legal knowledge—and that's significant.
The other interesting part of the mix is that we found when we asked doctors to assess their self-knowledge of law, there was a trend that doctors seem to have a better understanding of their own legal knowledge. So those doctors who said, “Look, I don’t have a great deal of knowledge in this area,” tended to perform less well than those who said they had considerable legal knowledge in this area.
So again, that's interesting because it means doctors may have a good sense of their own legal knowledge. They may be in a position if they think, “Look, I'm interested in knowing some more about the law,” this research suggests that doctors are able to accurately assess, to some extent at least, whether or not they do need more legal knowledge.
And with the finding that recent CPD training can in fact increase that—I think the combination of those results presents an opportunity to advance this issue.
CAMILLE MERCEP: Professor White's research is linked on our website: racp.edu.au/pomcast. If you're interested in completing CPD training on end-of-life decision-making, we've also provided a list of courses and tools, as well as guides to the relevant legal frameworks in all Australian states and territories, and in New Zealand.
We'd like to thank Ben White and Colin Gavaghan for appearing on this episode. The views expressed are their own and do not represent legal advice, or the views of the Royal Australasian College of Physicians. Please let us know your thoughts about the program, and our end-of-life series, by emailing firstname.lastname@example.org
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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. Next month, Professor John Rasko of the Centenary Institute provides an update in stem cell therapies—and why it's become his life's work.
JOHN RASKO: When we reflect that one day stem cell research may offer us the capacity to be able to provide for new organs, new tissues, 3D-printing, perhaps, even for the possibility of organ transplantation—frankly, it makes me skip to work, every day.
CAMILLE MERCEP: Please join us.