Advance care planning resources

Dr J Chesterman

We move now to our next presenter, who is Dr Barbara Hayes, who would be well-known to most people in the room. Barbara is Palliative Care Physician and Clinical Lead at Northern Health in Advanced Care Planning. Please make Barbara welcome.

[Applause]

Dr Barbara Hayes

Thank you very much. This is going to be a fairly sort of quick look at both these aspects of my topic but hopefully it will stimulate some thinking for you to go away and reflect on. There are clinical implications of this legislation, both for clinicians and health services and, ultimately, for patients and their medical treatment decision-makers and families. I very much agree with John Chesterman. I think this legislation is very much about consent. The focus being on the person who lacks capacity to consent to their own treatment or who may lose capacity in the future. So, I think that’s the way to think about it and, can I also say that I actually think that the law can be a good friend to us clinicians. We often worry about being sued. We often think that the law is something to stay away from but I think the more we understand it, the better we are able to understand how helpful it can be and I actually think that a lot of this legislation is co-defying what we probably should be doing anyway with the focus on the patient, their experience of the illness and what the person would want.

So, looking at clinician implications, I think the legislation provides clearer obligations for health practitioners when a person lacks medical decision-making capacity. Firstly, we have to provide treatment with the person’s preferences and values and not best interests. We also have an obligation under this legislation to make reasonable efforts to discover an advanced care directive or the appointment of a medical treatment decision-maker. So, we actually need to ask … we need to ask so we can use the advanced care directives. If we don’t know about them, we can’t use them. Many people won’t choose to complete a written advanced care directive, but that doesn’t mean that they don’t have identifiable preferences and values that we can actually use when it comes to making decisions and that the medical treatment decision-maker is able to use when they have to make decisions for a person. We know from the literature that it actually can be quite difficult sometimes to complete advanced care directives because it’s difficult to anticipate everything that might lie ahead for us. How severe the medical illness is, the chance of our recovery. I would recommend this article. It’s probably my favourite article in the advanced care planning world and these authors suggest that advanced care planning should be about preparing the patient and their medical treatment decision-maker for the decisions that might need to be made in the future – real time decisions, rather than trying to make every decision now for future deterioration because that can be quite difficult.
So, I think, you know, this sort of conceptualises advanced care planning much more as a process. Some people will want to identify specific treatment preferences and values. Sometimes, actually, they do this for the benefit of the family. Even though we talk about autonomy being the driver, a lot of people do complete advanced care planning documents to actually make it easier for their family in the future.

So, our instructional directive provides legally binding consent and or refusal for current and hypothetical future conditions. So, that is a big change from what we have now with our refusal of treatment certificate. They do need to be completed with caution because you don’t want to rule out treatments that the person might actually want but just hadn’t thought about occurring and I think, we would hope and expect to see a lot more values directives and perhaps a smaller number of instructional directives. Instructional directives contain implicit consent or refusal but, even though it’s not the role of the medical treatment decision-maker to provide consent or refusal, good ethical and clinical practice would still require us to talk to the medical treatment decision-maker and the broader family about what’s happening. Also, it’s very likely that there will be a lot of decision-making that isn’t covered by an instructional directive. So, there may be lots of other decisions that need to be made that aren’t covered by the directive.

I think there’s quite a few system implications. First of all, as we’ve already identified, the forms and the guidelines, both for advanced care directives and the medical treatment decision-maker, these will become available through the Office of the Public Advocate and the Department of Health and Human Services websites. We need systems for actually capturing prior appointments of medical treatment decision-makers and advanced care directives and then activating them when the person loses capacity. We also need processes for adapting our current policies and forms. A lot of our policies and forms have language that will not reflect the new legislation and, so, putting the new terminology in would be one aspect of it. Policies around consent, including consent for medical, is one we’re grappling with at Northern Health at the moment. I think one aspect that needs consideration is policies around non-medical staff and instructional directives. It’s very usual for non-medical staff to wait for medical treatment orders to act upon those but this legislation requires that all registered health practitioners act on instructional directives. So, if there’s clear instructional directive refusing treatment, nurses at the bedside are going to have to act on that if they know about it, even if there hasn’t been an opportunity for that to be put into a medical treatment order. So, I think that’s something that we need to think about. There’s also going to need to be policies written around children and capacity and advanced care directives.

Of course, this is going to require a lot of education and so that’s going to be relevant for all the clinical staff and, of course, we’re going to need to be able to provide information for our patients and families and it will need to be in an accessible – it needs to be accessible both in, you know, using simple language and also in people’s preferred language.

I think we’re having a whole forum today, trying to get our heads around this legislation. So, you know, there’s a challenge in that and if it’s challenging for us, it will be challenging for lay people to understand it and it’s important that we’re all consistent and using the same language and not giving confusing information.

There is a checklist available on the table that the Department has developed for health services to actually think about some of the issues that they might need to think about in terms of preparing for this legislation and that’s what it looks like on the table there.

Now, this legislation very specifically allows a person with capacity to complete an advanced care directive. Now, a values directive can certainly be completed by people with cognitive impairment even if that requires some support in converting preferences of values into a written statement but there will be people who don’t have that capacity to complete advanced care directives and the Department is taking the approach that in Victoria, we are going to not use the advanced care planning concept for people who lack capacity. We’re going to keep that as a separate concept for people with capacity and, so, that’s a bit of a change in thinking about how we’ve been managing this in the past and … whoops, wrong way … so, what about all those people who lack capacity? Do we do nothing for those people? Well, in fact, the legislation helps us there too. So, we have this hierarchy of decision-making. If there’s an instructional directive, it goes straight to that for consent or refusal. Can I just say I actually think it’s really helpful to not talk about binding documents? Binding… but think about … or legally binding documents. You know, people often say, ‘are these legally binding’? Instructional directives convey legally binding consent or refusal. Other documents all have – the values directive is a legislative document and it needs to be given effect to and there’s lots of other information that comes about the person’s preferences and values. That also has to be given effect to under this legislation. So, there’s legislative support for other information about the person. So, I think we need to be a bit cautious in our language.

So, after looking at instructional directive, we look at the values directive to see if there’s a valid and relevant values directive, we look at other preferences expressed by the person. Values expressed, values inferred. So, we can learn a lot about people by watching how they make other decisions. How they live their lives, even if they don’t actually articulate that. A good example, I was talking to a neighbour whose mother was in a life-threatening situation and they had to make a decision about whether to try and persist with further life-prolonging treatment or whether to in fact say no, it’s time to stop and focus on comfort and they made that decision for their mother because they had watched their mother make that same decision for their father and they had heard her reasoning and thinking. So, it was a really straight-forward decision because they knew how their mother felt from watching that decision and if there is nothing to guide us, in terms of preferences and values, then it’s really about what promotes the personal and social wellbeing of the person.

So … I keep going backwards, sorry …

So, if we could capture these particular expressions or understandings and capture them in some sort of written document that could be useful as a way to communicate what we know, what others know about a person and this is what we’re going to do. We’re in the process of developing a form to capture what is already understood about the person’s preferences and values. It may actually be capturing previously stated oral advanced care planning. It may be based on what they’ve said, how they’ve lived their lives and made decisions, observations about how they cope with their health, health issues and medical interventions. It can be completed by a medical treatment decision-maker. It can be completed by other family, carers, close friends or maybe a professional care worker. There’s some people in our community who have no medical treatment decision-maker. Nobody to make decisions for them. The people who know them best are the people who care for them professionally. They know what they like and don’t like and what frightens them. Those sorts of things. So, more than one person can write in this document. It’s a living document that can be updated as new information becomes available and, as the person’s condition changes, so that perhaps something that they were not distressed by in the past like having blood tests or going to hospital. Maybe now, that becomes highly traumatic and we need to rethink about what is actually going to be best for this person. It’s also an opportunity – having a document like this, is really an opportunity also for the medical treatment decision-maker to sort of reflect upon what the person said and the things that would be important to bring to any medical treatment at a future time before a crisis. So, actually putting that information in a document that can be communicated and transferred etc.

So, how do we put all this together into, you know, activating all this, in terms of medical treatment decisions? I think the important thing to consider too is the patients’ preferences and values are one part of the decision. They are not the total decision. There’s also another element to any decision-making and it’s about what is wrong with this person? Why have they become unwell? What is reversible? What’s not reversible? What’s treatable? What’s not treatable? and, really, so any decision-making has to start with some sort of medical assessment. Medical in the generic sense but some sort of assessment about what’s wrong and what we might be able to do. Certainly, often, that is a doctor decision but, in the community, it might be the nurse who’s visiting at home – a nurse practitioner, for example. So, that’s the first step and I would just remind everyone that the medical treatment decision-maker is the substitute decision-maker for the patient, not for the doctor or not for the health worker. So, it’s not for the medical treatment decision-maker to do the medical assessment and to determine what the options might be. That’s our duty and our responsibility and we’re obliged to do this. So, that’s the first step. Once we’ve got that sorted, we’ve worked out what the boundaries are within which we can have a conversation about the treatment options and that’s a shared decision-making discussion. It’s a two-way conversation where either clinician explains things to the patient in a way they can understand and I learn about the patient so that I can explain things in a way that’s meaningful to them and help them sort out what might actually be most suited to them and hopefully come up with an agreed medical treatment plan.

So, that first step, as I said, is the bit we need to do as clinicians and that is the everything. So, when patients and families say we want everything done, that’s the everything. It’s not everything known to medical science and, previously, this was an understanding in common law, but this legislation actually articulates that, in that there’s no obligation to provide futile or non-beneficial treatment. So, when the patient can’t communicate with us in the medical decision-making, we need to speak with the medical treatment decision-maker. We still will, of course, involve the patient as much as they are able in that decision. This is where we apply any instructional directives, including the current refusal of treatment certificate would also fit up there as well. So, once we know what’s wrong or have some sense of what the situation is, then we can work out whether any instructional directives apply. This is where values directives and other advanced planning care documents apply. These inform the medical treatment decision-maker, as well as the clinician, about the preferences and values that the person wants to really be brought to that decision. So, that could include oral, written, it could be values directives or just some other written form of document and, certainly, in the hospital setting, that concept of an agreed medical treatment plan, including overall medical treatment goals and specific emergency medical treatments and limitations to that is a common thing that we do and, at Northern and a number of other health services, we would call this a goals of care and decisions about CPR fit right at the very end of this decision-making. It’s not the starting point.

So, the other piece of work that we’re doing is to look at developing something similar to the hospital goals of care for a residential aged care setting. At Northern Health, we’ve been trialling a residential aged care goals of care form. Monash Health, the residential in-reach, have also been trialling one. We’ve been learning from each other and tweaking and adapting our forms and we’ve also had input from a working group and the Office of Public Advocate and clinicians. We’ve come up with a template for a residential aged care goals of care form so that it’s a way of documenting or translating advanced care directives or other advanced care planning documents or just known preferences and values into medical treatment orders are unequivocal and can be acted upon by health care workers. So, we’ll also make a template available for people to look at a to use if they see value in that. At the moment, we see it as particularly useful for residential in-reach because, often, residential in-reach goes into aged care facilities and do a lot of treatment planning, working out what the limits are and working out what the person would want within those limits and, certainly, I see interested GPs being able to use that as well. So, the people living at home, people have asked questions in the past about what do they do and, certainly, where people have … certainly, if they have an instructional directive, then the ambulance paramedics must act on that. If they have other preferences or the person themselves is not able to complete an instructional directive, but their medical treatment decision-maker knows a lot about this person and knows that there are preferences for treatment limitations or there are medical reasons why there should be treatment limitations, then medical treatment orders can be created either by the GP or a specialist so that those orders are in the house as well. So, that’s basically our goals of care form which you can’t see but we will make available.

I’ll stop there and just another reminder. 102 days to go, so there’s quite a bit to do in that time. I know people have been doing … there’s lots of work been happening but there’s still, I’m sure, we’ve all got lots more to do, as the 12th March approaches. So, thank you.

[Applause]

Female Speaker

Our next session is Simulation. Witnessing requirements and exploring issues in meeting the witnessing requirements for advanced care directives. So, for this session, I would like to introduce, once again, Claire McNamara, Legal Officer from the OPA, Sonia Gardiner, Senior Medical Treatment Decision-Maker, OPA and Dr Barbara Hayes, who is a Palliative Care Physician and Clinical Lead for Advanced Care Planning at Northern Health. So, please give them a welcome.

[Applause]

Claire McNamara

Thank you. I’m expecting perhaps people will keep dribbling in a little bit. I’ll just do a sort of set up explanation. Ooh, can you sort me out, I just … [Laughter]. So, feel free to come closer because I try to involve people a little bit in some audience participation. Don’t worry, nobody has to do a role play. Only these two people and they signed up for it.

[Laughter]

Okay, so I’m just going to do a little bit of background here. Who can witness these documents under this new piece of legislation? In relation to an advanced care directive by an adult, needs two witnesses. Both must be adults. One must be a registered medical practitioner. Slightly different circumstances for a child. We’re not focused on that. Whereas the appointment of a medical decision-maker, a support person – similarly, two witnesses. One must be a registered medical practitioner, or a person authorised to take affidavits. So, in terms of a policy rationale, why is it that the advanced care directive just has a registered medical practitioner and not a person and not a person authorised to take affidavits, I’m guessing it’s because the government thought that it was appropriate that there was a medical conversation that went on before these documents were signed.
So, what is a witness asked to certify? In relation to an advanced care directive, they need to certify the person appeared to have decision-making capacity, in relation to each statement in the directive, which means you have to read it. It’s not just like if you’ve ever witnessed a statutory declaration or a will or something like that, where you just put your signature on the dotted line at the end of the document, you actually have to read the document because you need to see what they’re saying.That they appear to freely and voluntarily sign the document and they appear to understand the nature and effect of each statement on the document. So, that’s the certification for the advanced care directive and that’s what we’re looking at. The certification for the other appointments are slightly less complex, appears to have decision-making capacity and appears to understand the nature and consequences.

So, there’s no difference from the legislative … from the point of the view of the legislation, it doesn’t distinguish between those two witnesses. So, if I’m a witness over the age of eighteen, but not a … not a person who’s witnessed to take affidavits or a registered medical practitioner, my task is the same as the other person. However, I think if you’re a registered medical practitioner, witnessing a document, you would see that you’ve got some other duty of care obligations. So, some of those issues will unfold as we go through the role play.

So, what I’ve designed here is four different role plays. We’ve probably just do the first two as role plays and then we’ll do the last two as case discussions. So, what’s happened is that Barbara Hayes is not Barbara Hayes. She’s just a GP I haven’t given a name to [Laughter] and Sonia is a patient who has been given some names and she’s come along to the doctor with her advanced care directive for signature. Now, you see the floor and this set-up is that we’ve got one witness. That’s the way I’ve done it, unless somebody else wants to come up and sit on a chair on a stage and be the other witness but, for the sake of the exercise, yes, you need two witnesses but we’re doing it this way.

Don’t know about anyone else here but, ordinarily, if I make an appointment with my GP, they don’t know why I’m turning up, unless it’s in the context of an ongoing particular issue. It’s … I walk in the door and “hi, how are you? What are you here for today?”. So, in relation to each of these, it starts, you know, just so we don’t go through any of the greetings, pleasantries, the role play starts at the point where whichever role Sonia’s playing, she’s told the GP I’m here because I want you to witness an advanced care directive. So, really, to emphasise here, we don’t want to say this is a demonstration of best practice. We are in no position to know what best practice would be. Nobody’s done this before, the idea of this is just to try to tease out some of the issues that people need to think about so they’re a bit prepared.

Okay, so this is what life looks like for our unnamed GP, this particular morning. Four appointments, very rushed. At one level, the timeframe we’ve got for this presentation is less than ideal to fully explore the issues but, on another level, it replicates actually what life might be like for a GP in a consulting room.

So, we’ll start with Amanda. I’ll just read it out and then throw it over to Amanda to have the conversation with the GP. So, this is sort of written from the perspective of what the doctor needs to know.

So, Amanda has attended at this general practice for about five years for various miscellaneous, minor matters. Obviously, generally been of pretty good health. She’s had skin cancer checks, management of cholesterol and so on. She’s sixty three and single. The doctors referred Amanda for a colonoscopy when she noted rectal bleeding. The result of the colonoscopy is bad news. She’s got stage four colorectal cancer. Surgeon and oncologist have recommended surgery, chemotherapy and radiotherapy. Amanda has not consented to any of those treatments. She proposes to use alternative therapies. She comes to the practice and she’s brandishing her advanced care directive. It’s an instructional directive and it says “I refuse to have any treatment for cancer. I consent to all palliative care and I consent to any treatment provided by a Chinese medical practitioner or by a naturopath.”. So, I’ll hand it over.

Acting patient

So, doctor, I just need you to sign my instructional directive because the lawyer said he couldn’t do it anymore. So, if you could do that, I’ll be on my way.

Acting doctor

Hi Amanda, I’m very happy for you to help you with your advanced care directive but, before I look at that, I need to find out a little bit more about … talk to you a little bit more about what’s in the form but even though, before that, I wonder what prompted you to write the advanced care directive, at this stage?

Acting patient

Well, I don’t want any treatment for my cancer. I want to do the things I want to do, not what the doctors say. So, I’ve written down those three things and now I want the doctors to respect that but, apparently, you have to sign off on it.

Acting doctor

That’s right, yeah. So, let’s just look at what you’ve written here. So, you say that you refuse to have any treatment for cancer. Can you tell me a little bit more about that … what you mean by that? Well, I don’t want to have to be lying in a hospital bed every week, having injections and medication and then going home and having to come back in again. I don’t really like hospitals and everything I’ve seen about how you treat cancer, it all hurts, it’s painful and, well, so, I don’t want any of that treatment because I don’t want to be in any of that pain.

Acting doctor

Ok, so it’s avoiding the pain that’s the big issue for you related to cancer?

Acting patient

Yeah, yeah and, you know, I think all treatment for cancer is painful. So, I therefore don’t want to have any treatment.

Acting doctor

Ok. So, I’m just thinking you’ve had that bleeding, you know, that prompted the colonoscopy. So, if your blood count was getting a bit low and you needed, you know, some blood transfusions. That’s sort of cancer-related but, you know, would that be something that you would consider having?

Acting patient

Yeah, yes, so, I’m okay with having blood transfusions but I wouldn’t have thought that that was treatment for cancer.

Acting doctor

Well, yeah, it’s perhaps not direct treatment for the cancer itself but for the effects of the cancer.

Acting patient

Okay.

Acting doctor

I guess one of the things that worries me little bit too that I’m not sure whether the surgeon spoke to you about, you know was, because of where your cancer is, sometimes it can cause some problems, you know, with blocking the bowel and, you know, not wanting to sort of scare you with all these things, but so that we can think through – maybe things that you’ve never considered, you know. You know, if actually the cancer itself was sort of causing a blockage to the bowel and, you know, causing you a lot of pain and, you know, things weren’t going through at all, would you reconsider having some surgery then? Would that be something you would think might be actually a good thing to do? To sort of unblock the bowel and relieve that pressure and?

Acting patient

Wow, okay, I didn’t think that was about treatment for cancer. So, if that was something maybe simple and then I wasn’t going to be in any pain, like, yeah I’d probably want that.

Acting doctor

I mean, your surgery is probably going to cause some pain but it’s, you know, it’s … it would be to treat other … to sort of relieve the pain of the blockage and the nausea and vomiting that sometimes can happen. I guess I’m just trying to get you to think a little bit about, you know, when you say I don’t want any treatment for cancer, you know, what sorts of things and it sounds to me more like you’re thinking of the chemotherapy and the radiotherapy but, I guess, sometimes, you know, chemo … well, perhaps some of these treatments, you know, that they give for cancer – even though they, you know, primarily use the treatments to try and, you know, shrink your cancer and, you know, prolong your life and your health. Sometimes they also give them for just for symptom reasons. A bit like the surgery we were just talking about. You know, sometimes, you know, things like radiotherapy they can also give to the cancer to shrink it if it’s causing, say, some pressure in a particular spot and causing pain. So, it’s just that, you know, some treatments can be used … the same treatments can be used to, you know, to prolong life and to treat the cancer and shrink it but they can also sometimes actually be used to treat the symptoms and the pain, which is something that I know that you’ve already said that you’re worried about.

Acting patient

So, I mean, why did the lawyer let me write that then?

[Laughter]

Acting doctor

I guess I’m not … I can’t sort of speak for the lawyer but, I guess, part of the reason he’s asked you to come here is so maybe we can explore some of these things, you know, before we sign off on them and just see whether you need to make any sort of changes or make some additional, you know, points to maybe, you know, tease out a little bit more what you might want and also so you can just think a little bit more about what options there might be.

Acting patient

Okay, but I can still have it … I mean, this is all talking about doctors and surgery and hospitals but I want to make sure that I can have a Chinese medical practitioner and a naturopath. Am I not allowed to put that in there either?

Acting doctor

You can put that in there. I’m wondering when you say Chinese medical practitioner, what sort of medical, you know … can you explain a bit more about that?

Acting patient

Well, I like the idea of having a Chinese medical practitioner that can maybe help me with the cancer, with the pain and it not just have to be a Western doctor in a hospital.

Acting doctor

So, a practitioner who uses traditional Chinese sort of treatments, is what you’re saying?

Acting patient

Not that they’re Chinese themselves but that the practice of the medicine is Chinese.

[Laughter]

Acting doctor

Okay. So, I guess it’s just worth thinking about, you know, same as there is in, you know, Western treatment, you know, there’s a whole range of, you know, treatments you could have. You generally don’t consent to everything, you know. You sort of need to know a little bit about them. The same as Chinese herbal medicine etc, you know, you sort of … would you … are you saying you want to consent to absolutely anything or are you wanting to sort of be a bit more specific about the sort of treatments that you might want to consent to in advance because, you know …

Acting patient

Well, I mean, it’s been a stressful few weeks, obviously getting this information and, I mean, I probably haven’t thought about it enough except to think that if I wrote those down, that doctors might listen to me more but, I mean, with some of the things you’ve said, I suppose I need to think about it a bit more because that’s maybe too simple, what I’ve written.

Acting doctor

Yeah, I think it’s a good thing, you know, that you’re looking at writing down some of this information so that it is clear. The main purpose of writing an advanced care directive is, you know, preparing for … in case there’s ever a time when you actually can’t tell the doctors what you want yourself because, you know, if you’re able to speak for yourself, of course, you can tell them - they won’t need to look at the advanced care directive. It’s really trying to cover a time when perhaps you’re, you know, very sick or maybe sometimes when people are very ill, they’re a bit confused and they’re not able to, you know, make their own medical decisions.

Acting patient

I’ve got no one else.

Acting doctor

Haven’t you?

Acting patient

I mean, there’s no one that’s going to help talk for me if I do get really sick and, so, I need something that the doctors are really going to listen to but it sounds as if what I’ve written is going to be a bit confusing. [Laughter]

Acting doctor

Well, I think it may be a little bit unclear and I think perhaps it needs … you need to have a little bit more … or, together, we need to think a bit more about this and talk about it. The … what you want in this document is that, you know, if you can’t speak for yourself and you don’t have anybody else to speak for you that, whatever you write down, the doctors are going to sort of be really clear and say, oh yes, I know exactly what Amanda means and yes, it applies here or it doesn’t apply. So, the more carefully we can craft the language and help them to understand exactly what your thinking is, then I think more useful the document is going to be and I can certainly help you with that. I’d be really pleased to help you with that. So, I think probably we need to just put off signing it today and maybe, maybe we need another appointment – a longer appointment and we can really sit down and talk through this and we don’t have to get it all done at once. We can, you know, talk about it and work on it until you’ve got something that really reflects exactly what you want it to say.

Acting patient

Thank you, doctor.

Claire McNamara

Well, who doesn’t want Barbara Hayes to be their doctor?

[Laughter]

I prepared a few points about this. Some of it came out during the course of it, so I’ll just quickly talk through those and if other people have questions or observations. So, clarity of language. What is a Chinese medical practitioner? It’s perfectly explicable that somebody would say Chinese medical practitioner but it’s ambiguous. Is it a practitioner of Chinese medicine or are we describing someone’s nationality/ethnicity? Should the GP feel she has a role in questioning Amanda’s decision currently not to have recommended treatment? It’s not about questioning the autonomy of the person, it’s just being helpful and providing enough information to feel confident that Amanda has actually got to an informed decision. Are there any triggers for querying whether she has decision-making capacity, in relation to each statement in the advanced care directive? This scenario was not written to have doubts about decision-making capacity but, you know, that’s always a question.

How can the GP satisfy herself that Amanda understands the nature and effects of each statement? What might treatment for cancer entail? That’s essentially what the discussion is about. What does she understand by palliative care? Does she understand that sometimes patients have chemo and radiotherapy for palliative purposes? So, you can see here … in fact I think this is probably a good demonstration, perhaps the parliamentarians’ view that you need a doctor to sign off on one of these documents because, for me, as a lawyer, there’s no … I mean, I might have done some clarification of language, but I wouldn’t have … I wouldn’t have had that medical knowledge and people agree? Is it saying that there’s value-adding actually from having a medical practitioner? Yep, sorry, I’ve cut someone …

Female speaker

No, I was just going to make a statement really that sometimes in practice, we don’t necessarily have the time.

Claire McNamara

Yep, I’ll just paraphrase what you’ve said because most people in the room perhaps didn’t miss that, so, a couple of points. One, you know, what onus is there really on a GP to do this and that’s why I say the legislation isn’t what imposes the obligation beyond the witnessing requirement. So, really, it comes from your own professional sense. You know, are most GPs going to be sufficiently be informed and skilful to be able to, you know, do what you’ve just seen demonstrated and it’s not a vote of no confidence in all professionals but it’s a case of having exposure to all of this. So, it will take some getting used to. The other thing that comes through here is Amanda is annoyed. She’s been to a lawyer, she’s paid a lawyer to do something for her. Her lawyer sent her off with a document which maybe the doctor privately is thinking what a piece of rubbish but, you know, they’re not going to say that because, you know, professional respect etc. So, the … what ultimately is going to help people with advanced care planning is if there’s a multidisciplinary shared understanding. So, I encouraged lawyers to come to this forum because I’ve been to these forums for several years and said the lawyers aren’t here. I know it’s aimed at health practitioners but if we don’t have a dialogue going on between lawyers and health practitioners, we’re doing a disservice to people in the community.
Female speaker

Can I also add to that? I think GPs are very used to referring people and consulting with other people and, I think, if a patient comes to you with an advanced care directive as a GP, you feel, my gosh, I’m totally out of my depth. Then, I think it’s quite reasonable to say, well, look I think this would be good to talk to your heart specialist or your gastroenterology specialist or whatever. Let’s … can I … perhaps if you work out some questions to ask them together and you can take those questions and then I send a letter off and forewarn the specialist that the patient is going to come and ask some questions. To help them prepare their advanced care directive. So, I think, you know, in that sense, it has to be done right now, it’s probably better that it’s done well than it’s done quickly.

Claire McNamara

Often, with medical, I mean, people make the fit … that there’s always a … I feel like there’s often a sense of rush when you go to see a doctor but, you know, sometimes you should make a thirty minute consultation and, though, things won’t get done in one go. So, Amanda, Amanda’s lawyer, rather than … at least, the perception she has, sending her off with a document that she thinks is a rubber-stamping exercise should have made her understand that she should make a long appointment with her lawyer. Maybe even have written a briefing letter for her to take to the doctor because the doctor … the lawyer understands the legal test and the doctor doesn’t know the legal test. So, there’s a range of issues there.

We’ll just move on to. Sorry to rush people. I know perhaps you have questions, but we’ll get to some different issues by doing a couple different scenarios. So, we’ll move to this one.

Patricia has been a patient of this doctor for twenty years. She’s now aged eighty seven. The doctor has noticed over the past year or so that she appears to have short term memory problems. Her husband, Vincent, who was also your patient, died a few months ago. Patricia attends your clinic with her daughter, Eliza, and asks you to witness an advanced care directive and the appointment of Eliza as a medical treatment decision-maker. The doctor asks Eliza to wait in the waiting room. Eliza seems reluctant to do this, saying that her mother wants her there. Patricia looks confused but does not say anything. The doctor firmly tells Eliza it’s important that you meet Patricia alone. When you’re alone, you ask Eliza to talk about why she’s making the advanced care directive and what her understanding of it is.

Okay, so, I’ll hand it over. Sorry, I didn’t read out … which slide is it on?

So, the instructional directive says: “I do not want to be resuscitated. I do not want to be put on life support” and the values directive says “my daughter, Eliza, knows me well and she will know what is best for me. I do not want to suffer like my husband, Vincent, did. I want to have pain relief. I do not want unnecessary treatment which extends my life but brings me no comfort and quality of life”.

Acting doctor

Patricia, I just want to talk with you on your own. I know Eliza’s been talking to you about filling out some forms, appointing her to make medical decisions for you and another form about called an advanced care directive. Can you tell me what you understand by these forms and what you’ve been discussing with Eliza?
Acting Patricia

Eliza just, I mean, she gave me these forms and, you know, she said it would be a good idea to fill them out.

Acting doctor

Okay. So, I guess there’s the form talking about treatments for the future. What … did you write … did you complete the form by yourself or did … what form? This one here, see?

Acting Patricia

The one from Eliza?

Acting doctor

Yeah.

Acting Patricia

No, she writes better than I do, so she knows what to do. She always knows what to do.

Acting doctor

Okay. Well, there’s … the form that’s Eliza’s given you, it’s this one here that we’re looking at, it’s a form that is used for people to write down things for the future. You know, at the moment, you can tell me how you’re feeling and we can talk about, you know, your tablets and your treatment and things like that but, you know, if some time that gets a little bit harder and that gets too hard for you to actually, you know, tell me what you want and be able to explain things and be able to understand, you know, the medical stuff, maybe someone else like Eliza is going to need to make decisions for you but this form is a way of actually you writing down things that you would want Eliza and the doctors to know that might help them if they had to make decisions for you and you couldn’t, you actually couldn’t explain yourself. Does that … is that something…

Acting patient

I mean, Vincent, he did all of that for me. That was what he did for me and I did for him and now he’s not here and now there isn’t anyone to do it for me.

Acting doctor

Okay, so, is there anybody that helps you, other than Eliza?

Acting patient

Eliza helps me. She knows everything and she tells me what to do and she writes lots of things down.

Acting doctor

Does she? Is she … is she … is Eliza the person you want to help with all these things? You know, to help you with the doctor, going to the doctor and making decisions? Is the best person for that or is there somebody, do you have other people who also help with those things?

Acting patient

No, I mean, I haven’t been to the doctor recently. I’m not sick, am I?

Acting doctor

No, not so sick, no but, I guess, sometimes when you get to your age, things start to get a little bit frailer. Yeah …

Acting patient

I don’t like thinking about being old and what’s going to happen next though. Eliza likes to do that. She likes to talk a lot and she likes to write things down a lot and she likes to tell me what to do. So, Eliza does.

Acting doctor

So, what do to you want to do?

Acting patient

I just want to be at home with Vincent, look after my cats.

Acting doctor

You’re not so keen on talking about all these things?

Acting patient

I don’t want to. I mean, Eliza, she does. She says that I have to, you know, get my affairs in order because I’m old.

Acting doctor

Does she? Yeah …

Acting patient

That’s a bit mean, don’t you think? [Laughter]

Just because I’m old, I have to start talking about these things?

Acting doctor

Well, some … I guess, you don’t have to. Some people like to plan ahead and, you know, make … put things in order to try and plan for the future. I’m sort of sensing perhaps that’s not quite how you like to do things.

Acting patient

Well, what are we going to tell Eliza?

[Laughter]

Acting doctor

We might [Laughter]

Claire McNamara

Good question. So, again, I’ve just got some points here. One of the experiences we have at our office on our advice line – I don’t know there’d be a single day when an adult of middle years calls and says I want to take out a power of attorney over my mother or my father and we have to really work at reframing that. So, essentially that’s the dynamic you’ve got here. Eliza’s learnt something about advanced care planning and she’s a helpful but maybe bossy daughter and she’s taking charge. So, I don’t know how often this might happen for GPs and other health practitioners that you need to see a patient and have to reluctantly … have to shake off the person who’s come along to be their support person. Certainly, an issue for lawyers. We’ve done training for lawyers over the years around powers of attorney that they’ve got to be really clear who their client is. It’s the person making the power of attorney and, you know, certainly in getting the documents drafted by a lawyer, you wouldn’t want Eliza in the room and, similarly here, there’s already a known relationship, a twenty year relationship between this doctor and this patient and a knowledge that the person has got some mild cognitive impairment is a trigger to knowing that maybe it’s a good idea for Eliza not to be there but if you consider that they might have gone to a doctor who didn’t know them at all, how much can that doctor be onto that?

So, some questions here about decision-making capacity. Would impaired short term memory mean the person lacks decision-making capacity? I’m going to pose the questions and answer them. It doesn’t mean they lack capacity, but it is a trigger to think it to be clear about things. As John Chesterman said in the earlier session, there’s a presumption that adults have a decision-making capacity. So, that’s our presumption but is there something that creates a trigger that requires some other sort of assessment? Could decision-making capacity be affected by grief and depression? I’m guessing from a medical point of view, the answer to that would be yes. There is a sort of depression state, you know, is it the right time to be making decisions? On the other hand, maybe it is the right time to be making decisions because the person who used to be there to do that with her is now not there.

So, how would you handle … and this is where the GP would have needed to get to. If she’s going to get there, she was delicately suggesting that maybe there is a different direction we can, you know, kind of clarify exactly what Patricia herself wants to do but if, as a witness, and whether you’re the GP or any sort of registered medical practitioner or you’re the other witness, how do you handle telling someone I won’t sign this. I’m not satisfied you have decision-making capacity because my guess is that person is going to be very offended because most people are going to think you’re telling them that they’re stupid. So, that’s not what you, you know … you need to have … it’s actually a hard … it’s a hard task, which is why there needs to be at least one person, you know, with significant professional skillset.

Okay, and so, coming back to where it was sort of left, what are we going to tell Eliza? Should the GP now say well, let’s hold on. Let’s bring Eliza in and perhaps let her know where we’ve got to. Does she feel she’s got an obligation to say anything to Eliza because if she doesn’t and she just sends Patricia out and Eliza says what’s going on? You haven’t got this document witnessed, Eliza might well take her off to another doctor. So, what’s your responsibility to that person? I’m not saying there’s easy answers to this. This is … in any situation, there’s always more information than is going to be in a made-up scenario and then the document itself. Is the instructional directive clear to a health practitioner? I don’t want to be resuscitated. I don’t want to be on life support. Is that clear? In the advanced care directive, after all, what it’s saying is that Eliza knows best. Well, maybe that’s exactly what Patricia thinks. I don’t know that that’ such an unusual attitude for a person of eighty seven to think, perhaps about a child they have immense confidence in. That they’ve known for sixty plus years of their life. I mean, it wouldn’t be the way I personally would phrase it but, essentially, for me, I would think the person who is my medical treatment decision-maker in this circumstance would know what’s best for me, but it does seem a little bit paternalistic, especially when you know Eliza wrote it.

So, they’re some of the issues that that was designed to draw out. Does anyone want to ask a question or make an observation?

Female speaker

With regards to the second witness, do both witnesses have to present for signing?

Claire McNamara

Yes.

Female speaker

So, who could be the second witness? Anyone? Or it could be a family member or …

Claire McNamara

Yeah, it can be anyone … anyone over the age of eighteen.

Female speaker

So, it can be another family member and if they don’t have any obligation to …

Claire McNamara

In fact, if the doctor had got to the point of wanting … being satisfied to sign off the advanced care directive, she might have needed to get Eliza to come back in the room because the advanced care … she wouldn’t be able to get Eliza to be a witness to the appointment to the medical treatment decision-maker, though, because Eliza is named as that person.

Female speaker

Another relative could do that …

Claire McNamara

Yep, so it is difficult. You need to … I mean, this is a practice issue for GP clinics. They don’t necessarily have someone sitting around who’s got time to sit in on a consultation. So, at our office, generally when we send people off to a JP to get powers of attorney witnessed, we tell them you probably have to take someone with you. The JP won’t have somebody else there. So, it’s a bit of a practice issue.

Okay, I’m …

Male speaker

I’m tyring to see what the ulterior motive can be for the medical treatment decision-maker. Why would we then try to [Unclear 32:56]

Claire McNamara

Well, it may not … the question is – is the medical … in what way is the medical treatment decision-maker trying to be exploitative? Now, it’s not so obvious. It’s … I don’t think Eliza is evil here. It’s just that she is … she’s stepped up into that space of being the daughter who’s, you know, taking responsibility and supportive in one way but could look a little controlling in another way but, if I was to give you a different sort of scenario, where I trod along with my mother and say “here she is. She’s got an instructional directive and she doesn’t want the administration of anti-biotics for pneumonia and, really, I now my Mum is going to get pneumonia. She’s got COPD. It’s going to happen. It’s going to happen this winter” and between her and anti-biotics is my inheritance”. That’s really … and, there is an offence in the Act for inducing someone and I’m not saying these facts circumstances give rise to that, but there is an offence for inducing someone to do an advanced care directive. Yep, yep.

Speaker

[Inaudible]

Claire McNamara

Every, each of the laws has different witnessing requirements. So, yep. All I can say in this one – the witnessing required for the advanced care directive – two witnesses, over eighteen, one must be a doctor. Whereas for the medical treatment decision-maker or a support person, the witness couldn’t be the person that you’re appointing but, yes, it can be … they haven’t done all those exclusions in the way that they’ve done in the Powers of Attorney Act.

What I’m going to do is, with this next example, rather than do it as a role play, I’ll just talk it through and then we’ll see how we’re going for time, in terms of the fourth one and I’ll explain, in particular, why I wanted to explore this as an issue.

So, the scenario is that Cara is going to a doctor, a new patient. So, she’s not seen this doctor before. She’s aged twenty three. Her reason for making the appointment with this GP is she wants an advanced care directive witnessed and she wants to appoint her friend, Samantha, to be a medical treatment decision-maker and a support person. So, there’s a lot of language here and it says “I have a mild intellectual disability. Sometimes, I need things explained to me several times and in simple language. If you take time with me to make sure I understand, then I’m able to make decisions. Sometimes it will help me if my health practitioner speaks to my support person. My support person wrote this document for me, but I do understand it. I can read. I do not want health practitioners thinking I can’t make decisions, just because I have an intellectual disability. However, if a health practitioner thinks I can’t make a decision for myself, then I want my medical treatment decision-maker to consider the following: I want the same medical treatment that a person with an intellectual disability would be offered. I’ve got private health insurance, I prefer women doctors, I’m scared of injections, I need to have a friend with me. Sometimes I suffer from anxiety and depression. I’m on a low dose anti-depressant. I want to stay on this, otherwise I do not have any health problems. My mother sometimes thinks I can’t make decisions for myself and she likes to make decisions for me. This is why I want to appoint my friend, Samantha, to be my support person and medical treatment decision-maker. I do not want my mother to make medical treatment decisions for me. Samantha is allowed to speak to my mother to tell her about my health problems.”

So, the reason I wanted to particularly introduce this sort of scenario is because I’m aware at these conferences, very often is about the end of life and advanced care planning is not only for people nearing the end of their life. I’ve got a twenty three year old woman with no real significant health issues. I spoke recently at the AGM of Reinforce, which is an organisation of people with intellectual disabilities and I went to speak to them about what they would like communicated on their behalf to health practitioners about how they should be treated and I said I had a platform to do that and I would use it. So, one of the things in this legislation is it does not refer to disability. The question is decision-making capacity. The Reinforce AGM I went to, it was an ordinary AGM. They produced accounts, they read reports and I said to them at the end, some of the experiences they were telling me they’ve had with health practitioners, if we could have rounded up those health practitioners and watched them run an AGM, there would have been no doubts whatsoever about their decision-making capacity. So, should somebody with an intellectual disability have to do this? No. Would it be helpful? Possibly because, in a sense, you go forth and you’ve got a piece of paper which his already cut through to the start. Are people with intellectual disabilities not offered the same treatment as other people? Sometimes. That’s a question … that’s an advocacy question that, you know, Sonia would have put to health practitioners any number of times. You know, when treatment’s not been offered, would you offer this treatment to a person without an intellectual disability? Because there is an unrecognised prejudice and bias on this point. And, of course, fundamentally what Cara is trying to do here is express her autonomy as an adult. When I was twenty three years old, my mother wouldn’t have thought to attend a medical appointment with me. A doctor wouldn’t have thought to call my Mum and tell them the reasons I’ve gone to a doctor for and, yet, these are the experiences of people like Cara. So, what she’s saying is my Mum is not my medical treatment decision-maker. I didn’t choose her. I’m an adult like anyone else and I’ve chosen someone I trust. So, of course, it’s the same task for the GP here, as for anyone else. They’ve got to satisfy the usual set of certification requirements.

Does anyone want to comment? Has anyone done advanced care planning with a person with an intellectual disability? Are we making … yes … and the other. I could have done a case scenario around mental health too. Like, just don’t forget the community is full of people who have all sorts of different life experiences.

Okay, now even though I said to Sonia and Barbara we wouldn’t do a role play for the fourth one, are you up to doing that because we have a bit more time than I probably thought. Yep? Okay.

Number four is Terri. Terri has been your patient for many years. She’s been on dialysis for six years. She’s now aged seventy seven. She tells you she’s decided to stop dialysis. She says that she’s decided to complete an advanced care directive so that her decision-making is clearly documented and removes any burden from her family. She has three adult children. Her husband died many years ago. In her instructional directive, she says “I refuse any further dialysis and dialysis treatment. I understand that I will die within days or weeks of discontinuing dialysis. In her values directive, she says I have appointed my friend, Randolph, to be my medical treatment decision-maker. I’ve chosen him because I do not want any of my children to be burdened with having to make any decisions for me. I’ve spoken at length with Randolph. He attends the dialysis clinic with me and well understands medical issues associated with dialysis and my current preference not to continue with this treatment. I am ready to die. If, for any reason, my instructional directive is not considered relevant and binding, then I ask my medical treatment decision-maker to refuse dialysis for me. I ask my family members to respect my decisions, preferences and values.”

So, this is what she’s brought to her appointment.

Acting Terri

So, doctor, I’ve put a lot of thought into this and wanting to do this instructional directive and I think I’ve been clear in what I want and what I don’t want and I now need to have you witness that for me. You know, I know that this means that by stopping or getting to a point of refusing dialysis, that that means I’m going to die. I’m more worried about my daughter, Bethany, because she’s not coping with this. So, I think that writing something down allows my views to be respected and not get too caught up in doing just what Bethany wants because, I mean, I’ve been on dialysis for six years now and it feels like the last year or so has just been because Bethany has wanted me to.

Acting Doctor

So, this is something you’ve been thinking about for a quite a while?

Acting Terri

I would say the last year or so and I’ve talked a lot about it with Randolph. I met him at dialysis, so he knows what I’m going through and Bethany, I don’t think that she does. She doesn’t come every three days a week with me. She doesn’t see what it’s like, see what it feels like but, you know, she’s also told me that if I do something like this, it’s essentially, I’m committing suicide but I don’t think that’s what it says.

Acting doctor

How does that make you feel?

Acting Terri

Well, I suppose that’s why the last year, I’ve kind of got along with what she’s wanted but it’s too burdensome for me now. It’s not something that I want to do continue to do. Not only Bethany, but the other doctors, I think struggle with the idea of me saying no and what that means because they’re used to just people agreeing and consenting and I want to now know that I can refuse something and that doctors, as much as my family will have to respect that, that they won’t be able to argue with me with what I’ve written here.

Acting doctor

You certainly can refuse treatment if you don’t want it. So, and I can see why you … you’re wanting to write this down. I see that you’ve appointed Randolph to be your medical treatment decision-maker, in place of the family. Have you told Bethany and the other family about that? Are they aware that you’ve appointed Randolph?

Acting Terri

I’ve started that conversation and, you know, Bethany and the other kids know that I’m coming to see you today. I don’t know what I then do with this piece of paper, with the instructional directive, though. If I have to … do I have to … do I have to give it to Bethany? Do I have to give it to my doctor? I don’t know what to do about that though?

Acting doctor

The form itself – it’s really documenting the sorts of conversations it sounds like you’ve been having and the purpose of writing it down in the instructional directive and your values directive is so that you’ve probably aware that, you know, that as your kidneys start to fail, you’re likely to get a bit more, you know, a bit confused and so other people might need to be making decisions for you and it’s at that point in time, it’s this form comes into effect because, at the moment, while you’re clear and you’re thinking and you can tell the doctors what you want, the form doesn’t really matter but it’s a way of making your thoughts clear in a way that people now how to respond, you know, as you become more unwell which, as you say, is going to happen.

Acting Terri

So, if I do this with you today, I just leave it with you and you’ll tell the doctors and you’ll tell the family?

Acting doctor

Well, [Laughter] there’s a few questions in there. Firstly, once we’ve, you know, we’ve witnessed, and the document is complete, you would keep the original of that document. It’s important that you have it, but we would need to make some copies. Randolph would need a copy and I can help you – we put a copy in our file here and I can also help you – we can send copies, you know, with your permission, off to the hospital where you have your dialysis so that, you know, if you do have contact with the hospital, that they’ve already got that there but it will be important, you know, for Randolph to have a copy and to know that, you know how to speak up for you.

Acting Terri

Okay.

Acting doctor

In terms of the family, I think it probably would be, you know, good for them to have a copy then at least they’ll know what you’ve said and what you ask … how you’re asking Randolph to advocate for you in those decisions. It sounds …

Acting Terri

And if Bethany turns up to the hospital and says that she’s my daughter and she can make decisions for me, this means that she can’t?

Acting doctor

Well, this says you’ve appointed Randolph to be your medical treatment decision-maker. Have you actually done that formally? In a written document that actually appoints him? Has that been done?

Acting Terri

No, but I’ll go away and do that now.

Acting doctor

Yeah, because that will be very important to do because, you know, the law … in the law, there’s sort of people that can be medical treatment decision-makers if you can’t speak for yourself and Randolph wouldn’t be those people. Your children would be the first point of call and they’re the people that the doctors would actually speak to but, if you want someone other than your family, then that’s going to be very important that we do that. So, I would think that perhaps doing that … you know, that’s something that we need to do perhaps even pretty much the same time. Sounds like you’ve spoken to your children about that, so at least they’re aware that you’re going to appoint Randolph. So, that won’t be a surprise and you’ve had some discussion about this, your wishes here. So, that’s, you know, it’s not going to come as a total surprise and you’ve also spoken to the hospital doctors – the kidney specialists, haven’t you?

Acting Terri

Yes, yep.

Acting doctor

So, have you got … so you’re … so, has the decision already been made that you’re not going back to dialysis or is it sort of decision that you’re contemplating still about when you have your last dialysis.

Acting Terri

No, I think once I have all this paperwork in place, this has been signed off and I formally appoint Randolph for the medical treatment decision-maker, at my next session, I’ll be giving all that paperwork and allowing my decision to be enacted from then.

Acting doctor

Yeah, I guess the other thing would be, you know, if it’s at all helpful, I’m very happy to meet with you and Bethany and maybe help you have some of that conversation as well.

Acting Terri

That would be great, thank you.

Claire McNamara

So that, to me, that looked like a really fantastic demonstration of advanced care planning so that patients come in with an advanced care directive for witnessing but Barbara has conceptualised it more broadly with all the elements of advanced care planning and, so, you know, that’s got to be more helpful for someone. They don’t just walk away with a signed document – that they walk away, having contemplated some of the communication issues.

So, in this one, what I was sort of wanting to explore is how you can create a good dialogue between your instructional directive and your values directive and, you know, she’s got a back-up plan. She’s made her decision, but she’s got a back-up plan with her values directive. Is it an effective way of communicating preferences and values to family members? Well, depends when they read it. If it’s a starting point for sitting around the family table, probably it is, but Randolph, a guy who maybe no one in the family has ever met but Terri knows very well because she sat in a chair next to him three times a week for the past couple of years. They might see him as a blow-in, so managing all those relationships is really important.

So, look, we’ve got a couple of minutes for any questions or observations.

Male speaker

[Inaudible]

Claire McNamara

That’s it – the situation anyone always need to be thinking about but if … if then, if it’s not Randolph, then it’s going … it could be Bethany. So, if you don’t want it to be Bethany, one of the other things I might put, you know, as a lawyer, I would suggest to someone “sounds like you don’t trust Bethany to make a decision for you, so the best thing to do would be to say in your values directive that you do not want her to be your medical treatment decision-maker. You don’t have a relationship with her that empowers, you know, that makes that possible, so you’d look to appoint an alternative perhaps. You always need to be thinking about … yep, that’s right, he’s on dialysis too but I’m no expert on dialysis. I did look up a website, just to get a sense of how long it takes to die once you stop … it’s pretty quick, you now, so [Laughter] and, so the response that Terri has about, yes, once I have the paperwork in order, that’s when I would stop, is sort of pretty sensible because, once you stop, I don’t know that you can really restart it anyway.
Any other … there’s lunch out there. So, far be it for us to keep you from your lunch but I think you’ll agree, most people don’t like doing role plays but they did a fantastic job.

Thank you very much.

[Applause]

The new legislation that comes into force in 102 days. Alright, so that commences on the 12th March next year. Unfortunately, that’s a public holiday. [Laughter] Presents a challenge but, nonetheless that’s when it comes into force. So, what I’m talking about here –are two things, really, and this has been a big challenge in getting information out about this legislation. One is that it deals with advanced planning and, so, you’re here today to do advanced planning forum. That’s not too much a problem. The other is that it has significant implications for the process by which medical consent is given to medical treatment by people that aren’t able to consent to the treatment themselves and that’s the other element. So, it’s not just about advanced planning. So, we’re not going off to talk to health services and other places and having to keep making the point – it’s not just about advanced planning although it is an element. Alright, an important preliminary point to note is this legislation overrides the Medical Treatment Act, which is no longer in force from the 12th March and subsumes almost all of the provisions – the medical treatment provisions and the Guardianship and Administration Act. Importantly, legal documents made under those Acts prior to the 12th March next year, remain valid. That’s one of the constant queries we’ll get at the Office of the Public Advocate about whether someone’s enduring power of attorney medical treatment remains valid and the short answer is if it’s valid when it’s created, then it remains valid.

Ok, so let me talk firstly about advanced care planning under the new legislation and then I’ll look to medical consent. So, from the 12th March, as you can see on that slide, people can make an advanced care directive. They can appoint a medical treatment decision-maker. That’s the new term for person responsible. Going back further and further – next of kin and they can appoint a support person and that’s a new role that I’ll talk to you a little about. So, of course there are formal requirements for the making of an advanced care directive and there’ll be forms available from the 12th March on the health website – you can see there – and on the Office of Public Advocate website and in our revamped Take Control book and of our OPA new forms on your table there – the flow chart for providing consent. So, there are some formal requirements. One of the – for creating the advanced care directive. One of the two witnesses must be a registered medical practitioner. Interestingly, in an earlier draft of the Bill, there is a requirement that one of the witnesses be either a registered medical practitioner or someone able to take Affidavits, like a lawyer. Now, the lawyers have been removed as authorised witnesses of an advanced care directive and, in part, I think that’s because we’re mindful that, not only does someone have to have the ability to – the capacity to know what they’re doing in creating their directive, and there’s no doubt a lawyer in a Collins Street office could gauge that, but the implication can be for one of the kinds of advanced care directives that I’ll talk to you about, an instructional directive, it is binding. So, the concern, I guess, has been that this instrument might be fine now but it might be put into use in ten years’ time. In scenarios that even perhaps the lawyer in the Collins Street office may not foresee how this might be utilised. I think that’s part of the thinking why one of the witnesses has to be a registered medical practitioner. There are no specific obligations on the medical practitioner, in terms of how they witness it but the hope is, I imagine, that they would be aware of the types of scenarios in which such a directive might be put into use.

Ok, so, in terms of – that’s one of the witnessing requirements for advanced care directives for the appointment of a medical treatment decision-maker and the appointment of the support person has a lower witnessing threshold. So, you need two witnesses, one of whom must be either a medical practitioner or able to take affidavits. So, there’s different witnessing requirements for the reason that I’ve just gone into.

Alright, so, advanced care directives are legal documents that set out either a person’s preferences and values, which is a values directive, or binding instructions, which is the instructional directive. It’s in relation to the medical treatment of the person and in the event that the person doesn’t have decision-making capacity to consent to or refuse medical treatment they’re offered. So, you might have an advanced care directive but if you’ve got the capacity to make your own medical treatment decision, you make your treatment decision that can differ from your directive. The directive comes into play if you don’t.

Ok, there are two kinds of directives – the values directive is a statement of a person’s preferences and values as the basis on which they’d like any medical treatment decisions to be made on their behalf. So, this has to be considered by a medical treatment decision-maker and you’ll see in a moment. In making any treatment decisions, medical treatment decision-maker, we’re moving to a new paradigm, away from best interests, where a medical treatment decision-maker might make a decision based on what they think is in the best interests of the person. We’re moving to a situation that we call substituted judgment, where that decision-maker is required to make the decision that the person themselves would likely have made. So, how do you know what decision the person themselves would likely have made, a values directive will be very important in that regard.
Alright, the other kind of advanced care directive is the instructional directive, which is a statement of a person’s medical treatment decision that is directed to the patient’s health practitioner. It takes effect as if the person who made it has consented or refused the commencement or continuation of the medical treatment. Now, it’s very important, of course, if people take up this option of completing an instructional directive, that they bear in mind the kinds of scenarios in which this might be utilised. For instance, a person might say, ‘I never want any life support, should I be unable to make my own decisions’ and that might sound like an important exercise of the person’s preferences. However, as many people in the room would know, there may well be scenarios where otherwise routine operations might require a person to be on life support for twenty minutes and expected to make a full recovery. If your binding advanced instructional directive saying ‘I don’t’ want this’ and they’re not able to make a decision themselves, then that’s what happens. So, in the development of the forms, there’s no prescribed form but in the development of the form, the Department of Health and Human Services and OPA assisting in this, were wanting to put flags all over the place on the instructional directive to bring to people’s attention the situations in which they might find an instructional directive being put into play.

Important point to note, as we go through, where ever there are concerns about the validity of an advanced care directive or indeed a medical treatment decision-maker or a health practitioner wants advice on what they should do on XY and Z situations, the Victorian Civil and Administrative Tribunal is the umpire in those situations.

Ok, let’s look at medical treatment decision-makers. So, a person can appoint a medical treatment decision-maker with the authority to make medical treatment decisions on their behalf if they don’t have decision-making capacity to make the decisions. A patient’s medical treatment decision-maker must make the decision as I say that they reasonably believe is the one that the patient themselves would have made. This is a paradigm shift away from simply empowering the person to make the decision that they think is the best one in the circumstances to making one – the decision that they believe the person themselves would have made. That’s why advanced care planning is so important because it’s through that process we all know that the process is more important than any document. Through that process, we get to understand what the person’s wishes are.

There’s also a new role in the legislation of support person. So, one of the signature developments in the field of human rights, especially when we look at the rights of people with cognitive impairments comes under the heading of supportive decision-making and the believe that people should play greater roles in the decisions that affect them and that even where they might have some limitations on their ability to make decisions, they should be supported to make their own decisions. This development is a bit of a nod in the direction of supported decision-making and there’s equivalent nods in legislation in Victoria, particularly in the powers of attorney legislation. Anyway, so this is a new role of support person and the role, as you can see there, is to support the patient to make, communicate and give effect to their medical treatment decisions and represent the interests of the patient, in respect of the patient’s medical treatment, including when they don’t have decision-making capacity. So, the idea here is a person can appoint a support person but the decision still rests with the individual, not with the support person. The support person, however, is thereby legally enabled to get, for instance, information that health and privacy legislation would otherwise inhibit them from getting. That’s one of the legal implications of this role. So, it’s a way in which a person can appoint someone else to assist them to get information and to assist them in making a decision.

That’s all I wanted to look at with the advanced planning element. So, now I want to turn to the medical consent elements and they are, of course, related but there are specific provisions that simply relate to medical consent. Right, a general observation, of course, health practitioners need the patient’s consent before providing medical treatment unless they’re providing emergency treatment. The new legislation sets out from the 12th March, the medical consent process for a patient who does not have decision-making capacity to make the medical treatment decision. Right, so how do we define decision-making capacity? The legislation adopts now a pretty standard definition of capacity that’s in place in other countries in the world, particularly draws from the UK’s Mental Capacity Act. So, a patient has decision-making capacity for medical treatment decision if they’re able to do four things - understand the information relevant to the decision, retain that information to the extent necessary to make the decision, use or weigh the information as part of the process of making the decision and communicate their decision in some way. It doesn’t have to be by speech. It can also be by gesture or other means. Importantly, adults are presumed to have decision-making capacity, unless there’s evidence to the contrary. Oftentimes, it will be important to allow people to have more time to make a decision if they have, for instance, some degree of cognitive impairment but the simple fact of having some degree of cognitive impairment doesn’t automatically mean they don’t have decision-making capacity.

The legislation applies to registered health practitioners in those professions you can see listed up there. Now, this is a much broader group of professionals than under previous medical treatment laws. Also broader is the definition of medical treatment, which has two parts. So, medical treatment is treatment by a health practitioner for one or more of the purposes listed there and for one of the forms of treatment listed there. So, the purposes are around diagnosing, preventing disease, restoring bodily function, improving comfort and quality of life. The form of treatment includes physical or surgical therapy. Treatment for mental illness – I’ll come to that in a second, treatment with prescription pharmaceuticals. Now that’s an important development because our guardianship legislation currently, which is the most important legislation concerning the provision of medical consent for people who aren’t otherwise able to consent currently excludes pharmaceuticals and regular dosage levels from the definition of medical treatment. Pharmaceuticals are now included. That has significant practice implications for the provision of pharmaceuticals for people who aren’t able to consent to their provision and consent on that person’s behalf will now be required. So, that’s a signature change here.

The legislation adopts, what you might say, is a much more everyday definition of medical treatment. There’s also treatments – dental treatments included in palliative care and I’ll say something about palliative care in a moment. Importantly, special procedures which term the guardianship legislation still in the guardianship legislation includes things like sterilisation and abortion for people who aren’t able to consent to that. They stay in the guardianship legislation and consent there has to be provided by the Victorian Civil and Administrative Tribunal. Just for those special procedures.

Alright, emergency treatment. Now, emergency treatment – the term ‘emergency’ exists in the one of the headings in the legislation but the term itself isn’t in the body of the legislation. Instead, there’s reference to urgency. So, medical treatment or a medical procedure that is necessary as a matter of urgency to save the patient’s life, presents serious damage to the patient’s health or prevent the patient from suffering or continuing to suffer significant pain or distress can be provided without consent. So, it’s an important last phrase there – significant pain or distress. So, where treatment comes within that exception, it can be provided without consent. However, if the health practitioner is aware that the patient has refused the treatment in an instructional directive, they mustn’t proceed with treatment.

Now, I’ll say a bit more about the obligations on health practitioners to search for advanced care directives. In short here, if emergency treatment is needed, a health practitioner is not required to search for a directive that is not readily available. Point being, though, if they are aware there is one, then that has to be observed. If a health practitioner is aware that the patient has refused treatment in their instructional directive, there are limited other circumstances where they can refuse to comply and these cover where circumstances have changed so that they believe their directive is no longer consistent with the preferences and values of the person or where a delay caused by an application to VCAT would lead to a significant deterioration in the person’s condition and in those circumstances, the instructional directive doesn’t have to be followed. Now, that, I know, raises questions about what comes within and how do you get advice about whether something comes within those exceptions and that’s something that indeed has to be worked through as the practice implications for this legislation being considered.

Alright, obtaining a medical treatment decision the Act sets out three steps for the health practitioners to follow when a patient doesn’t have decision-making capacity to make their own medical treatment decision and I’ll go through those. So, step 1. Is there advanced care directive with an instructional directive? So, health practitioner must make reasonable efforts in the circumstances to find out if the patient has an advanced care directive with the relevant instructional directive. What’s reasonable in the circumstances – of course, that’s not defined in the legislation. it depends on the situation and on the time-frame in question. Largely, in the person’s ability later to … if they’re able perhaps to regain capacity, of course, that’s something that has to be borne in mind as well but is there an advanced care directive with the relevant instructional directive? If yes, give effect to that. So, if the patient’s refused the particular medical treatment in their instructional directive, then the health practitioner withholds or withdraws the treatment. They’ve consented to it then they administer it. So, this instructional directive is advanced consent or refusal.

If there’s not an instructional directive, we go to step 2. Is there a medical treatment decision-maker? So, there is a hierarchy in the legislation, as there is in the current guardianship legislation. Interestingly, it’s a smaller hierarchy now. So, at the top is the person’s appointment medical treatment decision-maker. Next, is the guardian appointed by VCAT who has relevant powers to make medical treatment decisions and there’s the automatic hierarchy of these people – spouse, primary carer, adult child, parent of the patient, adult sibling of the patient. Importantly, there’s the qualifying phrase that whoever is at the top of that automatic hierarchy under point 3, has to have a close and continuing relationship with the person. So, the distant Aunty can’t fly in from Darwin and just make a medical treatment decision. The person has to have a close and continuing relationship and where there are debates about does this person have that – such a relationship – or are there others who are claiming that they are higher in the hierarchy, VCAT ultimately is the decision-making authority. So that if there are more than one in that particular category, for instance, an adult child of the patient, the eldest of those persons makes the decision. I usually drop in a personal anecdote at this stage, which I apologise if people have heard me say before – I’m the father of identical twins. Who is the older of my identical twins is a matter of some debate in our house? One was plucked first but I say that they were conceived at the same time. Anyway, that would be a question for VCAT but for the fact that I have an older son. [laughter]

Ok, so, is there a medical treatment decision-maker? If yes, they make the decision and bearing in mind, if they make that decision, it is on a substitute of judgement, based on what the person themselves would likely have wanted, not what I simply think is best. Alright, so, the medical treatment decision-maker makes the decision. If there’s not a medical treatment decision-maker, then we go on and this is where we divide proposed treatment into two categories: significant treatment and routine treatment. So, if it’s a significant treatment and there’s no instructional directive, there’s no medical treatment decision-maker, then the decision falls to the Public Advocate or her delegate to make a decision and this is a variation on a current authorisation process we have, known as the Section 42K process, which is a registration of a document process, it’s not so much a decision by the Office of the Public Advocate, so we are moving to an actual decision now. In situations where we are talking about signification treatment, the legislation pretty briefly defines significant treatment with a mix, you’ll see, of objective and subjective elements. So, significant treatment means any medical treatment of a patient that involves any of the following: a significant degree of bodily intrusion, a significant risk to the patient, significant side effects and significant distress to the patient. That last one, of course, is a very subjective element. So, an example here would be someone who has a morbid fear of dentist. Any operation by a dentist might be significant treatment for them but it might not be significant treatment for Ian, over there, who I see – an old friend of mine. Might not be significant treatment for him. So, there is a subjective element there. So, if it is significant treatment, then the decision is made by the Public Advocate. If it’s not, then the health practitioner may provide treatment without consent and, so, if it’s routine treatment – routine treatment is treatment that is not significant.

So, you have on your table, a guideline to what is significant treatment, which goes in rather more depth than those four dot points. It extends to 20 pages on what is significant treatment and that’s an important guide that’s been developed in the lead-up to the 12th March.

Right, there are provisions around acting in good faith. A health practitioner who, in good faith, without negligence, reasonably believes they’ve complied with the medical consent process set out in the act is not guilty of an offence or liable for unprofessional or professional misconduct. This is a helpful kind of summary of the steps for the health professionals to take. So, these slides will be publicly available. So, you can see there – is there advanced care directive with the relevant instructional directive? If yes, give effect to it. If not, is there a medical treatment decision-maker? If yes, they make the decision. If not, is it significant treatment? If yes, the Public Advocate makes the decision. If not, the treatment may be administered without consent.

Alright, the Act also provides for a process for health practitioners, where the patient is likely to recover within a reasonable time. If the person is likely to recover in a reasonable time, the treatment can only go ahead if it’s consented to in an instructional directive or if the medical treatment decision-maker consents and delay would lead to a significant deterioration in the person’s condition.

Palliative care – now this is a very important point. Anyone who purports to refuse palliative care in an instructional directive, that becomes effectively a values directive. So, it’s only suggestive for a medical treatment decision-maker and, indeed, there is another provision that enables a health practitioner to go against the desire of the medical treatment decision-maker to refuse palliative care. So, palliative care can be provided. There is no obligation on health practitioners to provide futile or non-beneficial treatment. It’s an important statutory provision that really just brings to the fore the common law position prior to the 12th March and there is a consent process for the provision of medical research. There is a similar procedural authorisation process where medical research is [Unclear 23:08] for someone that is not able to consent to it, as currently exists under the guardianship legislation, known as Section 42T process.

Importantly, with this legislation, we’re getting rid of a bizarre distinction in Victoria between – a bizarre distinction that most lawyers can’t even tell you what the distinction is between withholding consent to treatment and refusing treatment. We’re getting rid of that distinction now, which is good, and the way we’re doing it is essentially by empowering all medical treatment decision-makers to refuse treatment on behalf of a person. Now, you’ll understand there are ethical issues involved that perhaps distinguish a situation where I point someone – I point Joe to become my medical treatment decision-maker. I can do that, knowing that I’m empowering Joe to make decisions. It might be different, though, if I’m not authorising someone but someone has that role, simply on a statutory hierarchy. We’re empowering both to refuse treatment on my behalf. There’s an important safeguard there that, largely, we think we will apply with people with lifelong and significant and cognitive impairments, whereby if a health practitioner is away that a person’s medical treatment decision-maker is refusing treatment and they – the health practitioner – reasonably believe the preferences and values of the patient aren’t known or are unable to be known by the medical treatment decision-maker, they must tell the Office of the Public Advocate which can then decide whether to make a guardianship application in those situations.

Alright, you see there, the websites for further information and, just to reiterate on the obligations of health practitioners, there are broad settings where urgent treatment can be given without consent, including to prevent significant pain and distress. As I said before, health practitioners can’t treat if they know there’s been a refusal of treatment in an instructional directive but the obligation to search is only what is reasonable in the circumstances. Again, the general obligation to find a medical treatment decision-maker also is what’s reasonable in the circumstances. Importantly, in terms of finding an instructional directive, of course, there’s no compulsory register at the moment. We’ll be hearing later on about the My Health record facility and there will be the possibility of people uploading their record onto My Health record, but, of course, registration is not compulsory. So, you have the operational question of I completed an instructional directive. In five years’ time I’m presented to emergency, how does anyone know I’ve got an instructional directive? That’s an operational challenge that will … in short, what we’re saying to people is if you have an instructional directive, you really need someone to know about this, other than in the context of the current relationship with the health practitioner.

And, that’s all I wanted to say, at this stage. So, you can see those websites. There are a range of materials on your table and we are looking forward to hearing your thoughts as we go through the day about the practice implications of all of these significant changes.

Thanks for your attention.

Dr J Chesterman

Our next presenter is also well-known to most of the people in the room, Associate Professor Charlie Corke. Charlie is a leading intensive care specialist and author of an upcoming book. We don’t have a copy here, do we, but author of an upcoming book called ‘Letting Go’. I’m disappointed. It was going to be called ‘Way to go’ – that was your running title, which I quite liked but it’s called ‘Letting Go’. He’s had marketing discussions with his publisher, I’m sure, but it’s a great pleasure to welcome Charlie to the stage.

[Applause]

Associate Professor C Corke

Well, John, thank you very much. Thank you everybody. We’re at that sort of stage in the afternoon after a day of fantastic talks, where you’re probably thinking that it’s all really difficult and, so, my job is to show you that it isn’t. So, I’d like just to share some early results from a study that we’re doing. The study’s not just concluding but I felt like it was so interesting that it was something that I’d like to share with you today. I hear so often from patients – my family and my doctor will know what to do. That’s my advanced care plan. They’ll all know and upstairs, we had in the session, we were asked would our family know what to do and we all agreed they would. So, let’s have a look at that.

Where do I have to point this at? Sorry, it’s being a bit annoying. Am I going the wrong way? Here we go.

So, I mean, when the papers come out, they substituted judgement. You know, you can’t decide for other people and these papers – it’s not the one I put up there for you but there are a number of others but they basically say that you give someone a terribly difficult problem and ask them what they’d like and then you give their substitute decision-maker the same terribly difficult problem and they don’t get it right and then you say, geez, they’re hopeless, aren’t they? Well, you know, I can’t choose off a menu for my wife, you know, I’d get it wrong. So, that doesn’t mean that we’re completely incompatible. It just means that, you know, it’s difficult, and when I choose for her, she says I’m wrong but then she eats it. She’s happy. [Laughter] So, let’s just move the reality into this sphere. So, we did an online survey, a snowball recruitment. So, people who did it invited others and invited others and got ethics approval from Barwon Health and, at the time of the data I’m showing you today, we had 420 subjects complete the survey. We gave them a hypothetical situation, and this is the situation where I worry, where I look for an advanced care plan. Ok, so we’ve got a 70% chance of death. So, its’ not good, they’re unconscious. A 70% chance of death, 25% chance of a horrible outcome and about a 5% chance of a good outcome. How do we react to that? Because, this is the time. You know, when you have 100% of a good outcome, we hardly look for advanced care plans. You know, occasional people say I won’t have it and you go, oh heck, but when there’s 100% chance of death, we don’t look for the plan. We just look for a plan when they’re unconscious and we know it’s terrible and we just don’t know which way to go. So, this is what we’re talking about. So, let’s have a look. Let’s see what happens. So, the age range of the people who did it – so, we got a reasonable number of older people doing it but, as I show you later, younger people are much more socially networked and more willing to do it but we’ll do a sub-analysis and we’ve got enough elderly people to look and see if they’re thinking differently and the religion is much the same as the Australian religion profile, so we haven’t got madly religious or madly unreligious in our survey. So, the question is – what do you think people want? So, we gave them the things – certainly want, probably want, so you remember this is the 95% bad, 5% good. Probably want, don’t know, probably don’t want, certainly don’t want. So, what do you reckon we’re going to find? I mean, it’s cheating when I just show you the results because it takes away the effect. So, do you think it’s going to look like this? Who thinks it’s going to look like this? You know, of course 5% is bloody fantastic! I mean, that’s what you do when you work all the time. You save everybody. 5% is bloody wonderful? You go much lower than that, I know you do. So, everyone wants it? Hands up! Oh dear, ok.

[Laughter]

People divide between those who really want it and those who really don’t want it. This is the Advanced Care Plan I did. Just ask people and they can separate. Tell you yes, I do, no, I don’t. Is that what they want? Is that what we’re going to find? No? Ok, this is what we found. So, it’s right all over the place. You can’t predict. So, this is the people before we started asking people individually what they want. So, we’re not trying to do advanced care planning now. We’re actually asking people who are actually conscious, thoughtful, able to answer them and they don’t know what they want because there’s a lot of people in the probably want and probably don’t want. Well, you know, that’s awful for us. We hate that. We want nice clean things. She definitely would never want it. That’s what we’re looking for. We got all this probable stuff. It’s really hard and don’t know at all. So, fundamentally, we don’t know what we want when we’re in this situation. So, why on earth can we ask people to do advanced care plans? It’s stupid.

[Laughter]

Ok, so, I’m sorry, you know. It’s sort of been a long day and it’s all gone [Laughter] but, actually, let’s take the question that I would’ve liked the others to ask about that’s the reality – we don’t know what we want. So, we go into this awful space and doctors and relatives make decisions for us. Let’s see how people respond to the decisions that are made for them. These same people who don’t know what the hell they want.

Ok, so first one – imagine your family and your doctor just tried to save you. So, we’ve got three choices here – angry, upset, understanding, pleased, relieved. Because, for me, I want to know who’s going to be angry. It’s anger that I don’t like. Patients who are angry that we treated them. I mean, the ones who died – it’s hard to tell that they’re angry that you didn’t treat them [Laughter] but the ones who survive, I always ask them and, you know, and this is really representative. The vast majority sound understanding, that’s ok. A few are really angry with you and I feel really upset about that when you put them through a whole load of treatment, they’re angry with you. That’s what we’re trying to avoid, isn’t it? So, there’s not too many that are really pleased that they got saved and it’s interesting that some of the people who said in the first one that they wanted treatment were then angry that their relatives treated them. [Laughter] So, you know, it’s hard. So, what about the other way? Imagine your family and your doctor decide not to save you? Well, that’s fewer who are angry, so that’s good. Actually, a lot of people are relieved. So, if you don’t know what people want, probably not doing it in a 5% survival might be better. [Laughter] You know, our default is … certainly, we can listen to it. So, actually, the message is that people are incredibly forgiving. So, all this stuff about I’m in awful agony, I might’ve done the wrong thing for relatives and for doctors and for nurses and for everybody medically who’s involved with it and the ambos have this moral distress. Perhaps our moral distress is far too big. It’s hard as well and we’re just trying to make the best decision and I think that’s the message I’d like you to take away. That maybe we’re being too hard on ourselves. Too high expectations on patients and too hard on ourselves as decision-makers. We’re trying to make a reasonable decision that doesn’t anger people.

So, we went on and said how confident are you … I mean, already, you know, they didn’t know what they wanted so how confident were they that their family would make the right decision? [Laughter] And, they have amazing confidence. It’s lovely – we’re really, really, really trusted. Completely unrealistically trusting of our families. So, this is the reality, but have you completed it. Of course, they haven’t done an advanced care plan. [Laughter] So, nothing to help them. Amazingly confident they’ll make the right decision with no information. [Laughter] Have you appointed a decision-maker? A lot will say yes but I think they might not realise what it actually involves to appoint them but a lot more think they’ve done it. Certainly, the lawyers encourage you to appoint a medical enduring power of attorney, particularly in Victoria, where you get about $500 for doing it. So, a lot of people do it but without the plan. So, as far as I’m concerned, giving them some information to work with would be good.

So, the limitations of the study, other than the social network may not be completely representative, female – about twice as many females as men in the sample. Obviously, computer literate, well-connected, socially-connected and fit, because they are functioning and their social network, so not ill. Active participant, participation by motivated individuals in every study you do, you get motivated individuals. Trying to get, you know, completely unmotivated, unconnected people is hard as heck. [Laughter] Hypothetical may not reflect what is in reality, although I think, certainly, you know, the psychologists would say decisions made when you’re not stressed are actually better than ones that you make when you’re stressed but, medically, we always think that the one in stress is better and chances are not that certain in reality. So, our scenario might be a bit too clean.
So, the conclusions – ten minutes. That was mean giving me one. So, few of us … so, I think few of us have firm choices about the sort of situations that we’re worrying about for advanced care planning. So, don’t expect perfection. Most of us are forgiving of choices made by others. We trust our families to make a good choice for us and we should build on that because that’s what everyone is expecting. We should just help them. So, the idea of helping your family to make a good choice is a good strategy and surrogate decision-making. Surrogate decision-makers can generally be reassured that whatever they’ve chosen, they’re probably right. [Laughter]

That’s very important because we now have people with Post Traumatic Stress Disorder because they decided not … and I had a letter after I did something on TV, where this lady wrote to me and said 8 years after her Mum … she decided not with the doctor, not to move her Mum from the nursing home to hospital and she said for 8 years, I’ve worried every night about it. Isn’t that terrible? She said I saw your film and now I feel alright, which was nice. [Laughter] So I was very pleased about that. So, I don’t think surrogates are terrible decision-makers. I think they’re given terrible decisions to make. I think the values directive is fabulous and is what we want to do. People are not that determined that they’re going to write instructional directives. Over the years, the refusal of treatment form has been amazingly pathetically used in Victoria and I … clinicians, most clinicians have never seen one. It’s not a tool that’s been widely used in a useful way in this space. So, getting the values directive sorted out is really good and shared decision-making … we need, for families and doctors, is valued and important and we need to … but I don’t think we do it very well. I don’t think families understand shared decision-making. I don’t think doctors understand shared decision-making and I rarely see excellent shared decision-making at the moment and we need to focus on how to do it and, interestingly, we have a lot more values in our goals of care process and the nurses are saying, because it’s not a tick box saying no CPR, we’re doing CPR. So, they can’t cope with it at all and we’re getting a lot of kickback that it can’t be done and the doctors are the same, saying because it’s not a yes/no, absolute refusal, it’s a maybe and a maybe means yes.

So, thank you very much and [Applause] I’m sorry to do the marketing push but the ‘Letting go’ is all lots of stories about it, which I’ve written with a view that it can help people to understand what the issues are because the general public, as Danny has so beautifully shown us this morning, haven’t got a clue. So, stories are helpful and, so, there’s personal stories and there’s stories of masses of patients that I’ve looked after over the years that, illustrate, why letting a … why on earth do we have such difficulty letting go. What are all the pressures and how can we do it well? So, it’s a guide to how to do it well and there’s a little … it’s out in February. So, it’s a little marketing thing. Is that enough of a spruik for that?

And I’ve got to go, so ….

Dr John Chesterman

We do have some questions, if that’s alright? Charlie is happy to take questions. So, we do have a couple of minutes for questions and, otherwise, I’ll be starting to charge through some of the slide out questions but some questions, particularly for Charlie and his presentation. Let’s look around the … surely, someone’s wanting to ask a controversial question of Charlie. Charlie was being controversial up here. Someone put a controversial question for him. Right up the back – that’s a stretch. I’m not taking that as a question. Anyone? I’m going to look up on the open table and require one. Jenny … good. We’ll just get a microphone so others up the back can hear you. Jenny … thanks Sarah. Find your way around. I’m looking for other questions too. We’ve got about time for three questions.

Jenny

Charlie, when you say you’ve observed that there isn’t good shared decision-making, do you think we tend to err too much on putting it on families or too much on erring on being paternalistic?

Associate Professor C Corke

Well, we do both. We just depend on how we feel. We do both of those things badly and, so, on occasion, you don’t put … you know, so, the doctor can easily put “she needs to go to theatre and I need consent”. That’s the process. That’s not much shared there and, equally, we very frequently say, “what do you want” to the family. So, both of those are shocking and there’s everything in between. So, for me, watching a … what I think is a really good shared decision-making is a rare pleasure.

Dr J Chesterman

Other questions … I’m going to ask a Slido. We got one here … yup.

Female Speaker

Charlie, the Refusal of Treatment Certificate – was that a throwaway line or is there actually some data that we can look at about … the uptake?

Associate Professor C Corke

The data. Yes, it’s been very small, the uptake …

Dr J Chesterman

A little over a hundred a year Refusal of Treatment Certificates lodged with VCAT.

Female Speaker

John, where would we find that data?

Dr J Chesterman

Sorry, where?

Female Speaker

Where do you find the data?

Dr J Chesterman

From VCAT …

Associate Professor C Corke

The law said you had to lodge them with VCAT, so you know, so they’re all collected up and, of course, a number of those are Jehovah’s Witnesses, who use them quite actively but, in terms of, you know, I will not have ventilation, I will not have dialysis it’s very rare and you can see why it’s rare because it’s illogical.

Dr J Chesterman

Also, as people know, a Refusal of Treatment Certificate is in relation to a current condition, not some future condition. Other questions? I’m going to ask a slido question here of Charlie. I’ll get you Charlie’s view on this. This is a very popular question. Where does responsibility lie for the gap in advanced care planning completion in the health care system?

Associate Professor C Corke

Everywhere. It lies everywhere. I would hope that patients can do it and access it directly or people, not patients, people can access it and do it directly. GPs should be fabulous at doing it. It should be so central to what general practice is and does but it doesn’t fit with the timing. It doesn’t fit with the workflow and it’s not got an item number and it just doesn’t really, hasn’t really fitted in. Coming into hospital is the worst time to do it. I think we’ve worked that out. It’s all too confronting. So, it’s always been very difficult to work out. My attitude has been that, like everything, getting a ground swell of demand will make everything else come right. So, again, that’s the reason to write the thing. That’s the reason I do a lot of the stuff I do. To try and get people to understand why they’ve got to do it and, again, I’d go back and if everything integrates together and, you know, Danny’s patients – people outside Flinders Street, you know, it was horrific for me, you know. They haven’t got a clue, have they?

Dr J Chesterman

Any other questions? A last question from someone in the audience? Right at the back? We’ve got one over here. Just while the microphone comes over, another question from slido – what do you think Joe’s teddy bear is called?

Associate Professor C Corke

[Laughter]

Dr J Chesterman

Don’t answer that. We’ve got a question there?

Female Speaker

I’m curious why GPs find it so difficult to arrange advanced care plans for their patients and they refer them to the Office of the Public Advocate and they tell them to do it online and then bring it in and they’ll sign it.

Associate Professor C Corke

Well, I don’t know, I’m going to speculate. I mean, I think if I was a GP, I would be worrying that the specialist will think that I’m, you know, that they’re better than me and I’m not really good and that, you know, the idea that the GP is the one who mediates your death is sort of confronting, if you’re in general practice. You want … and you look at the adverts that I have to walk past in the airport. You’ve seen them – your GP, your doctor for life, specialist for life. You know, it’s not saying your specialist for advanced care planning, is it? [Laughter] So, it is a bit confronting. It’s about the fact, you know, I’m here to save and cure and heal you. So, if you layer this stuff on top, it’s hard and then specialists, of course, have it even worse because they’re definitely not in the dying business, you know. So, it’s really hard to actually embed this with doctors. It’s really against exactly what we do – the whole healing, saving, being wonderful stuff is not really sitting very well with this. So, I think the rest, you know, everyone else has to do it and push it on doctors, as opposed to getting doctors to do it and, as far as advanced care plans are concerned, I’ve had a bit … I’ll answer my own question. I have a worry that a lot of this is about the relatives. That the Advanced Care Plan is for the relatives. No, the Advanced Care Plan and the values directive is for the doctor and the relatives. It’s for both of them to look at. It’s not … and to come to choose wisely. So, the whole idea that the doctor wants to impose treatment and the relative needs to give consent and they’re difficult because they won’t and it’s … this is not the model. The model is about how we work together to come up with the best idea, the best thing for the patient in a horrific situation and my final point would be this thing with the doctors - it really upsets me when a patient has an Advanced Care Plan that has a whole load of information in, which you could discuss with the patient because they’re conscious, but in the hospital, we choose to leave it and not look at it until the patient is unconscious and then we query everything in it.

[Laughter]

[Applause]

Ann-Marie Fabry, Program Manager, Advanced Care Planning, Northern Health

My name is Ann-Marie Fabry and I’m the Program Manager of Advanced Care Planning at Northern Health and it’s my pleasure to introduce Claire McNamara as your speaker this morning. Claire has worked at the Office of the Public Advocate since 2005, initially in the role of Advocate Guardian and in the role of Legal Officer since 2008. Claire has delivered many presentations on Advanced Care Planning and the legal framework of medical substitute decision-making to healthcare professionals. Please join me in welcoming Claire McNamara.

[Applause]

Claire McNamara

Good morning, everyone. When I designed this workshop, my plan was for it to be an interactive workshop because, in my imagination, it would be a small room with about thirty people. [Laughter] So, instead, basically what I’m going to do is take you through a series of scenarios. At the end of each one that I’ve got time for, I probably won’t have time for all of them, there’ll be a chance then if people do want to make comments or observations. So, the idea here, really, is not to have all the answers. It’s to start bringing some of the issues up so people can keep thinking about it.

So, firstly, just to sort of set a bit of a framework here. Terminology – if you’re a lawyer, terminology is really important. Words have meanings and sometimes people use the same words but they mean different things. So, I’ve tried to set this up. It may not be that obvious but, just those first three bullet points about future planning, advanced care planning and advanced care directives in slightly descending size of font. So, future planning is our big thing and, in that, health issues video that we were looking at a bit before, when people are asked about advanced care planning, they were really talking about future planning. They’re talking about wills and insurance and etc. So, many of us, in fact, do all sorts of future planning. Most people in this room probably have insurance of some description, have a will, have thought about a will, might have done an enduring power of attorney for financial matters. To bring it to what we’re talking about today, then we’ve got a sub-set of advanced care planning, which is what I see as health and then one option within advanced care planning is an advanced care directive. So, whilst you’ve all chosen to come here to learn about or to start thinking about how to draft and interpret advanced care directives, I wouldn’t want you to have the impression that everyone has to do an advanced care directive.

Come the 12th March, I won’t be doing an advanced care directive. I don’t need to do one but that’s an informed decision. So, and especially picking up again from that health issues forum video, we shouldn’t be telling people they need to do these things because, essentially, this is all premised on a notion of autonomy because we sometimes hear stories from people who go into hospitals and they’re sort of presented with paperwork and they think they have to do this advanced care planning. It’s meant to be for them. It might help hospital efficiencies. It may or may not. I don’t know. That’s not actually my interest. My interest is in making sure people know what their rights are and you could make a very informed decision not to do an advanced care directive. So, I think that’s a really important thing to start with and understanding about. It’s simply an option.

Now, if you’re going to write a document, no matter what document you write, you need to know what’s effective writing. Now, I’m not suggesting people need qualifications or they need to go to university etc but writing – you don’t start by writing something. You start … before you get to writing, you think. You discuss and then the writing … or, for some of us, the writing might be the process that actually gets us to the document that sorts out our thinking process. Because, in our office, we’ve been working with this piece of legislation very intensively all this year. I’ve given a lot of thought to advanced care directives and how they might work for people, why somebody might want to do them and my thinking, at this stage, is that, essentially, you need to have a reason. You need to have a story and you need to communicate that story in some fashion in your advanced care directive because, if you imagine this, if I’m a person currently with decision-making capacity and a doctor has told me I need certain sort of medical treatment or any other health practitioner, I’m going to sit down with that person and have a conversation in real time. They’re going to give me real information. I’m going to make a decision based on that.

When I’m doing an advanced care directive, it’s like I’m creating a piece of paper that will be my advocate for me in the future. It will be my decision-maker for me. My piece of paper will be my decision-maker if I’ve made an instructional directive and, if I do a values directive, it’s empowering my medical treatment decision-maker. So, what I’ve done in this next slide, is to talk about writing for an audience and, on reflection, after I typed this up, I thought I left out an important and the preliminary audience, which is the self. If I’m writing an advanced care directive, I’m really writing it for myself because it’s a process of crystalising what I think and, particularly, if “And then I take control” publication at OPA, which will be available by the 12th March, we recommend to people that they review these documents every two years. So, that makes it very clear I’m writing it for myself. I’m going to review it, I’m encouraging people if they do it, that they review it. I might look at that down the track and think, what was I thinking? You know, something else has happened in life, I thought life wasn’t that precious to me. I’ve just had a life-threatening diagnosis. I have a really different attitude.

So, the first audience is the self and the second audience is health practitioners. So, when you’re writing your advanced care directive, who are you writing it for? Are you writing it for a health practitioner you’ve got visualised in your mind? Your current doctor, your dentist, your chiropractor. Are you thinking about the possible doctors in the future who don’t know you and, in your imagination, you think they’ll just treat you like a number? Because, really, what I think you’re trying to do is say something unique about yourself. I’m not just another 85 year old woman with dementia. I’m me. This is something about me, so that’s what I think you’re trying to communicate and the way people write is a form of showing something about themselves, which is why I’m not suggesting these need to be written by people with sophisticated writing skills but there does need to be some thoughtfulness.

You’re also writing for your medical treatment decision-maker. Well, if I was asked who my medical treatment decision-maker is, I would be able to tell you who that person is today but what if that person was involved in a car accident with me and also became incapacitated? It’s not that person, it’s someone else. What if it’s not someone for twenty-five years and, you know, so I can’t just be writing something to the person I think is my medical treatment decision-maker. I have to be writing it for anyone who could be and, ultimately, that could be the Public Advocate, a statutory office, somebody you’ve had no contact with, never heard of, don’t understand how they operate. So, you need … who are you writing for? Audience is really important for any writing task.

If you’re appointing a support person, similarly, family members, maybe there are things that you want to communicate to family members. I think I heard in that video, somebody saying, ‘I don’t want to be a burden’. So, what does that mean to people? Are they trying to take away a burden of decision-making from family members? Are they trying to communicate something that they know would be an inconsistent value with what a family member holds etc?

And, finally, VCAT. This might not be so obvious but, particularly if you’re doing an instructional directive, if a health practitioner is unclear as to whether or not that instructional directive is relevant in the particular circumstances, then the health practitioner may take it to VCAT and then VCAT is looking at that document and trying to make some sense of it too. So, I’m not suggesting literally people go through this process quite in that methodical way but I’m just trying to impress it, if you are working with someone who is writing something up, ask some questions that might get them to contemplate how is this document going to be read because, I mean, I know myself even though I take great care with when I write emails or I communicate, sometimes people … their response is clear to me that they didn’t understand what I said or they interpreted it quite differently to what I meant and that might be because I didn’t express myself well enough or because there was ambiguity or the person doesn’t read clearly either.
So, what I’m going to do now is take you through these scenarios. I’ve got eight of them and each one tries to pick up on something slightly different.

So, in this one, it’s about examining an instructional directive in the context of emergency treatment. So, just to reiterate what was said in the earlier session. Ordinarily, in an emergency, consent is not required. Emergency iis justified to provide treatment without consent but if there’s an instructional directive readily available and it refuses treatment, it will be binding. In what circumstances would an instructional directive be readily available in an emergency? So, this situation is perhaps, at some level, a little bit unrealistic but it provokes the discussion. So, an ambulance has been called to attend upon Martina, following a road accident. She’s 73 years old and was driving her mobility scooter across the road when she was struck by a car. A bystander, who was sitting beside Martina when the ambulance arrives, explains to the paramedics that she looked in Martina’s handbag to see if she had something to indicate her name and, unbelievably, discovered a document titled, ‘Advanced Care Directive’. [Laughter] The car driver is in shock and kept saying she just deliberately drove into oncoming traffic. Martina is unconscious, her left leg looks broken and she has abrasions to her head. The instructional directive in the advanced care directive reads as follows: “I have Multiple Sclerosis. I have been in poor health for some time. I have little quality of life. I cannot tolerate anymore suffering. I do not want to live. Under no circumstances, do I want to be resuscitated or intubated or given artificial nutritional hydration. I refuse categorically such treatment, even if it means that I might die. I have communicated these views consistently and persistently to my doctors, to my carers and to my family members.” So, obviously, this is not something somebody can do until the 12th March but, for the sake of the exercise, we’re in a future point in time and, so, the advanced care directive that Martina has written is very recent. So, leaving aside the improbability that somebody has fished an Advanced Care Directive out of a bag in those circumstances, I’ve got a few questions for us to look at. So, a health practitioner includes an ambulance paramedic. As I said before, if there is an instructional directive readily available, if it’s relevant, it’s going to be binding. So, really, our question is, is it relevant to whatever treatment seems to be necessary? The health practitioner can reasonably … because there is an instructional directive, if it was relevant, the next stage for a practitioner would be to consider even though there is an instructional directive, do I have time to go to VCAT to get some clarity about this instructional directive or clearly not in this situation. So, if they think that it’s going to cause a significant deterioration of that person’s condition, they would still be able to go ahead, notwithstanding the instructional directive. So, I can throw this to someone who is brave enough to try to answer the question – does this instructional directive seem relevant to the paramedics? Are they going to look at that and say, that seems relevant to any of the treatment we might provide right now, or just think, no?

Do you want to stand up and if you call out, I might be able to hear and repeat to everyone else?

Female Speaker

[Inaudible talking]

Ann-Marie Fabry

Alright, so you can see why people aren’t that thrilled that they’re going to have to make all these types of decisions in a difficult moment. So, you don’t want to be learning about the law as a crisis is unfolding. Health services need to be making sure that people feel equipped to be able to deal with this. So, the broken leg issue – one would presume, I would think, that if somebody has a broken leg, is in a lot of pain and, so, that is palliative care. So, even if you had it in your instructional directive, you don’t want palliative care, it’s not an instruction. It would be a values directive. It doesn’t seem to … it doesn’t necessarily read on the facts that she needs to be intubated at the moment. So, if we go back to the story, it seems to me … I’m sort of guessing how people might try to write these documents and I’m inclined to think people think, if they use very emphatic language, that they’re making their point really clearly but I’m not entirely sure that emphatic language always makes things clear and people have quite often said, ‘It would be pretty convincing, wouldn’t it, if you had a tattoo on your forehead which said NFR’ and I’ve always thought, no, that’s emphatic of something but it’s actually very unclear communication. It just leaves me with lots of questions. So, because I think writing up an advanced care directive, of course, I could sit alone in a room by myself and write something up and it would be a document that stands the test of anyone else’s comprehension but, by and large, most people are going to need to do this as a back and forth process of seeking clarity. So, if I was to sit down with Martina who has written this in, you know, under no circumstances I’d say, “Can I just explore that with you what you mean by ‘under no circumstances’?”.

So, I’ve got Charlie Corke sitting in the front row here and it reminds me because, I did a … a couple of neighbours of mine who are in their seventies don’t have children, their doctors have said they should do some advanced care planning, so I had them around for morning tea and got them to do the My Values and, because they started off full of “we wouldn’t want this, we wouldn’t want that” but we went through My Values and, in fact, their answers were really inconsistent and then I said “what about if you choked on this lovely piece of cake I’ve made for you today, do you want me to call the ambulance?”. “Yes”, which was sort of not what they’ve actually been saying because it struck me, really what was going on was, they still had a sense of decline would be a future thing and the immediacy – the attachment to life in the immediacy is a different matter altogether. So, if we … but one of the other issues that Martina’s story raises is, does it look to anyone in the way this reads, in your imagination, do you see this as a suicide attempt because the driver’s looking to … considering his culpability? So, isn’t that what most people say when they run somebody over? They came from nowhere. Anyway, the potential is that somebody will think it’s a suicide attempt and that puts any health practitioner into a real bind. So, is a health practitioner not able to provide treatment for someone in furtherance of a failed suicide attempt? I would imagine for health practitioners here, that would make you feel ethically quite uncomfortable and, so, legally, what’s the answer? Fortunately, the Department of Health and Human Services have put out a one-pager on this point and, rather than me going on about this further at the moment, if that is an issue that holds attraction to you, in the next workshop, you might want to go to the one that Phil Granow is doing, because he’s built this issue into it as well.

So, ultimately, really what I would want, you know, if we could bring Martina back from her state of unconsciousness and have a bit of a feedback session about how effective her advanced care plan was, what you really want to know is – is it serving her purpose because she’s written it for a reason and is it being applied for the reasons that she wanted? So, an expression like “under no circumstances”, I might … because it seems to me the story is in the context of her MS. It’s not in the context of unpredictable things that happen in life and that’s the sort of thing I’d want to try to explore with her. You know, often when people say, “I wouldn’t want resuscitation” and, you know, you start using those examples about what if you were choking on a sandwich and, you know, there’s a room full of – there were 350 health practitioners in a room, would you like someone to try to do something about it and, mostly, people probably do. So, that’s Martina. As I said, I want to get through each scenario is meant to raise slightly different issues. I’ll just keep pounding through them, even though none of the discussion is going to be absolutely complete.

So, we move to Loretta, who has dementia and has been residing in aged care for the past eighteen months. She’s still able to walk, using a walking frame. Can toilet herself, feed herself, go on outings but needs assistance with showering, dressing and medication. In general, she seems to be of good cheer and participates enthusiastically in activities. She develops pneumonia and her niece, Paula, who is her medical treatment decision-maker, is called to make a medical treatment decision about her being administered anti-biotics. So, this is one of the new thing about this about this piece of legislation that now the administration of pharmaceuticals is medical treatment. It’s not today but it will be on the 12th March and, so, it requires the consent of a medical treatment decision-maker. This is what Loretta’s advanced care directive says … she’s got a values directive. “I observed my beloved partner, Sue, suffer the cruelty and indignity of dementia and live long beyond what she would have wanted. I do not want this for myself. do not want my life to be a burden to me and to others. If I’m demented and develop health conditions from which I might die, then my preference would be not to receive treatment which might be life-saving. For example, resuscitation, tube feeding and anti-biotics.”

So, bring Paula into the picture. She’s the niece. She was appointed some time ago as a medical agent. In 1989, Loretta was an early uptaker of these powers. When she was significantly younger and her life was completely different and, by implication, before her relationship with Sue, let alone through the period of time when Sue lived with dementia and then died from it and Paula has never met Sue. So, here’s … so the question is, of course, from Loretta’s point of view, is this helpful? Does this advanced care directive help her or does it just make everything very, very confused? Because, you read the document and you get one sense of Loretta and then you speak to the care staff and you’ll get quite another perception of Loretta. So, is Loretta’s previous values directive speaking effectively for her current self? It might be the best she could do eight years ago but it’s the nature of our ability – human adaptability – that the things that we thought we couldn’t stand, we might be able to and that Loretta’s experience of dementia is proving perhaps to be quite different from her observations of Sue’s experience of dementia.

So, I said there that the advanced care directive seems to hint at a story but would more detail have been helpful? So, I guess my own thinking about this area has been that, in the legislation itself, they give examples of instructional directives and values directives and apologies to anyone who is involved in drafting the legislation but I think they’re really poor examples. [Laughter] The one about values directive is, you know, ‘if I can no longer recognise family or friends’ and the one about instructional is ‘not for resuscitation’. They’re blunt statements and what I’m saying to you is I think you need to move beyond a blunt statement and you need a story because if I was to sit down with a doctor and they said to me, you know, I’ve got pneumonia and they say “you should have anti-biotics” and I say “I don’t want anti-biotics”, they’re probably going to have a conversation with me about it. They’re not just going to say, “oh that’s your common law right, now enshrined in legislation”. [Laughter] I’m not saying that they’re going to, you know, they might just … they’re going to want to know why? Why don’t you want anti-biotics for pneumonia? They’re want to go to have a conversation. So, when a medical treatment decision-maker is trying to make sense of a values directive, it’s like they’re having a conversation with a piece of paper. So, it needs to have quite a lot of information there.

So, perhaps just a show of hands – how many people, if they were Paula – are going to consent to anti-biotics? Nobody’s prepared to put their hand up. [Laughter] Some are, but does that suggest that most people would say no to the anti-biotics? Did you want to say something again? [Laughter] Ah, because it’ a very … does anyone want to make a comment or an observation about their thinking about that? I’m not even going to tell you what’s right or wrong because there’s not enough information. This is a scenario. In real life, there’s more information. You keep asking to get more information. Does anyone want to … yeah?

Female Speaker

How do you [inaudible]

Claire McNamara

So, I’ll just paraphrase because, you know, most of the people in the room wouldn’t have heard that. So, essentially, Paula is the medical treatment decision-maker. She’s not just got that piece of paper. She has more than that. She can do some more data collection. She can speak … after all, Loretta’s been in care for eighteen months. The question might be well, most aged care facilities, upon admission, get people to fill out some advanced care planning documents. Was this reviewed at the time? So, even though it was made eight years ago, maybe Loretta’s, you know, been put to her in more recent times and she has said that’s what I want. So, you keep gathering some data. The other thing for Paula is and for anyone who’s in the position of being, from the law’s point of view, the medical treatment decision-maker, if you feel it’s a decision you cannot make, you do not want the burden of making, you are not obligated to do so. It would be perfectly legitimate for Paula to say, “I accepted this appointment so long ago, I can’t even remember it”. As you might be aware, under the Medical Treatment Act, the medical agent doesn’t even need to sign a statement of acceptance. It might be she was never told, or she felt honoured that her aunt trusted her over and above anyone else in her life and she says now, “I care about this person and I want to have some input into a decision but I don’t want the burden of the decision and I’m happy for the Public Advocate to do it.” [Laughter]

Sorry, obviously for us, we will follow a process. It’s not to say we don’t find decision-making burdensome but it’s not the same burden that a family member has to live with. So, it’s a perfectly legitimate thing for someone to say, “I thought I could do it but when it comes down to it, I can’t. I’m confused. I don’t get it. I don’t know what the person wants, and I can’t live with the consequence either way”.

Ok, so, Francesca. So, imagine this is from the point of view that you’re an advanced care planner, sitting down with her. She gives you a little bit of information about herself. Sixty-eight years old, her husband died last year, she has a son who lives in Bangkok and they Skype regularly. She has a daughter who lives a chaotic life, a history of drug use, petty crime, dubious boyfriends and Francesca has reluctantly ceased contact with her. Her daughter is older than her son. She has a brother, John, who has been a great support. So, that’s her family situation. Her health situation is she’s got metastatic stomach cancer. Over the past several years, she’s had many rounds of chemotherapy and immunotherapy. She might be eligible for medical research trials but her prognosis, at this stage, is that there is no further active treatment. She’s not ready to give up on life yet but she’s a realist, whatever all that means. These are the sorts of things people … these are the sort of coded expressions people use. “I’m independent.” “I’m fiercely independent.” Most of us are. What does it mean to you, if you’re independent and what does it mean to me if I’m independent?

So, as an advanced care … I could take it there are people in this room who are advanced care planners. Does anyone who is an advanced care planner want to talk through what they might do with Francesca? I’m not an advanced care planner, but I’ll do it. [Laughter]

The first thing I’d really be exploring with her is does she understand the law about medical treatment decision-makers? Does she understand who would be her medical treatment decision-maker? Is that going to work for her? Because, her daughter is older but is her daughter the one she wants to make decisions? Is her daughter even going to be available in any sense? Is it just going to hold everything up, as people try to track down the daughter, who is an unreliable personality and she might think that yes, she’d prefer it not to be her daughter. Maybe she’d like it to be her son. Is that a problem he’s in Bangkok? Not from my point of view. It’s a global world, these days. She’s Skyping him but it depends very much whether somebody is in Bangkok or whether they’re in Melbourne. How available and willing they can be. That’s the real question. Is her brother John the person who might be best to do this? So, some of you might be familiar with a product we have on our website called, ‘You decide who decides’, which we developed some years ago. I guess, as an antidote to people just rushing out and doing powers of attorney without doing some of the preliminary thinking first and considering issues of trust and what trust means to them? So, what does trust mean to Francesca? That it might mean that somebody is up for making a hard decision. It might mean that they’re, you know, that she can trust that they will advocate hard with health practitioners. That they won’t be really passive in a system that sometimes is more responsive to a squeaky wheel? What does it all mean to her? So, I’m not saying she should appoint a medical treatment decision-maker, it’s perfectly fine if she doesn’t and she just leaves it to chance in the way that some of those people in that video said that they would. When it happens, it will happen. That’s okay. That’s an informed decision. It may not be the decision that you would make but I asked a … when I did training with staff at work recently, there were about twenty-five people in the room. I said, “who here has made a power of attorney?”. I was the only person out of twenty- five people in that room. This is the office of the Public Advocate which, when I started working there in 2005, had publications saying everyone should make a power of attorney, which is not what we say now. [Laughter] We say everyone should consider making a power of attorney and this is … I don’t … the shoulds aren’t about what you do, the shoulds are about giving information to people so they can come to their own conclusion.

I guess what I’d really want to explore with Francesca is, does she having any concerns that somebody is going to come running in and make different decisions at the end to what she wanted? How are they going to possibly understand what she means that she’s a realist? Sounds to me like she’s saying that she accepts that, at this stage, there’s no further treatment. Would she jump at a medical research trial? Would she … I’ve seen TV shows where people were prepared to have treatment that possibly was only going to buy them another three or weeks of life and go through chemotherapy for it. I’m standing here – I don’t think I would but, you know, that’s what somebody else would. So, where’s Francesca on that page?

So, I guess there’s a series of questions that might help elicit this for her. She has had this cancer for several years, so she’s thought about things. She’s sat in a chair in a chemo ward and she’s chatted to other people. So, but she may have had her head in the sand about that. I don’t know but these types of questions – what is she enjoying about life now? What’s meaningful? What would take away meaning? What does suffering mean to her? I think if you had to go through all those questions, you might then ultimately get to the question of do you want to make an advanced care directive? I wouldn’t start with that question. I would finish with that question and that would be my first session. Then I’d say go away and think about it. Here are some materials and come back and we’ll have another chat. That’s Francesca.

Okay, Nathan. It wouldn’t be an advanced care planning forum if we didn’t have a case scenario about Jehovah’s Witnesses and I do apologise to anyone who might be a Jehovah’s Witness or have somebody in their family about this because probably, often, the discussion is very uninformed truly about the belief. Anyway, I’m using it because it’s a short card example.

Nathan is twenty three years old. He’s a cyclist courier. He’s been involved with the local Jehovah’s Witness temple for the pass several months and he’s just been baptised. He’s disappointed that his parents and siblings do not accept his beliefs and lifestyle choices, is in good health and he has no medical conditions. He decides he’d like to prepare an advanced care directive with an instructional directive, refusing any type of blood transfusion for any medical purpose whatsoever. “I refuse blood transfusions for any purpose whatsoever, regardless of the reason for the transfusion being recommended. If any health practitioner ignores my clear and unambiguous instructional directive, then I request a member of my spiritual community to make a complaint to APRA about serious professional misconduct and to make a complaint to the Police for the health practitioner to be charged with assault.” He means business. What does Nathan’s Mum think about all this? [Laughter] So, it’s a pretty interesting story because you’ve got somebody who’s twenty-three. When does a male brain finish its full development? [Laughter]

Never? [Laughter] I thought, anatomically, twenty-five. Is it? Yeah. He’s a cyclist courier, he’s going to get hit, isn’t he? At some point, some time, there’s going to be blood. So, it’s a bit similar to the discussion that’s been had before about the children’s hospital. To what extent does a health practitioner equip a child with information that would be about them expressing their autonomy? To what extent if you think, say you’re Nathan’s GP, he’s come in and he’s got this advanced care directive signed and it needs to have been witnessed by a registered medical practitioner because it’s an instructional directive and he certainly means business here. You know, what sort of conversation might you have with him about all of this? Because it’s not for you to talk him out of his belief system or to form a judgement about his decision but it’s hard not to think that he’s twenty-three, he’s engaged in an activity on a daily basis, where the likelihood … and he’s new to this belief … but, this is, ultimately, the respect of autonomy of an adult and there’s nothing in this scenario which suggests that he lacks decision-making capacity at the time he’s made it.

So, does anyone think there would … because he said under no … he doesn’t want a blood transfusion in any, for any purpose whatsoever. So, does anyone think there would be a circumstance where a health practitioner might look at that instructional directive and think, “I’m not sure it applies to this time”.

Speaker

Could be a doctor Australia has [Unclear 32:53]

[Laughter]

Claire McNamara

To provide treatment with. Would you take it to VCAT? Would you make it VCAT’s problem? Or, do you just feel confident that you … yep
Speaker

Can I just … going back to our earlier discussion about attempted suicide. If he actually attempted suicide, you know that would change the circumstances.

Claire McNamara

Well, I had that conversation … yeah, Phil and I did have that conversation yesterday. Yeah, the follow-up was let’s say, he’s not going about his life not actually wanting to die, he just has a strong belief system but if we change it somebody perhaps who is wanting to commit suicide and the way they choose to commit suicide is to slit their wrists and have serious blood flow issues, it takes us back to the discussion we were having before about suicide.

So, it’s always a case of what you know and you can only do what you can with what you reasonably know and, quite often, information will only come to light after the event.

Speaker

The difference with this situation is, as opposed to [Unclear 33:59], usually advanced care planning is about outcomes and we try to remember [Unclear 34:05] outcomes this one is about beliefs. The belief around the treatments.

Claire McNamara

Yes, and that’s with the Jehovah’s Witnesses because, for those people who … not all Jehovah’s Witnesses, but those … they have been at the forefront of advanced care planning because they’ve needed to use the legislation as it’s been a Medical Treatment Act, it’s only been about a current condition and, so, I would think it’s been quite welcomed within that … not that I’ve spoken with anyone but I imagine that they’re very satisfied that the legislation has gone in this direction and give some possibility to do clear instructional directives.

If we just go back to this idea that somebody’s threatening legal action in an instructional directive, it’s not the instructional directive that’s going to give the grounds for the legal action but if you … I’m sure it’s the case that health practitioners often threatened with being sued, when you’re trying to stand your ground and you think that what you’re proposing to do is clinically appropriate and consistent with the law. Any one of us can threaten to sue anyone else. Easy. The question is whether there’s any grounds to it. So, if somebody if threatening to sue you, you don’t then do their bidding, you just reflect upon what they’re saying, whether there’s any merit to it whatsoever, you get someone else to provide a second opinion to support your clinical judgement and then you write very good file notes and then you just hold your breath and hope that you don’t get a subpoena.

[Laughter]

Ok, let’s move on from Nathan to Bradley. There’s Huntington’s Disease in Bradley’s family. He decides, at aged thirty-five, that he’ll get genetic testing, as he and his girlfriend are thinking of starting a family. He tests positive. He’s witnessed how this disease affected his grandmother and his father. He’s scared of what lies and wants to manage the possibilities as best he can. He knows he can trust Arlene, his partner, to be supportive of any decisions he might make but he also knows some of his families holds different views to his own. Spoke at a Huntington’s conference a few years ago and found it really interesting to learn, you know, of course, family members all have very different views. Surprise, surprise. So, it’s not all that … it’s not that straightforward.

So, he does an advanced care directive with a values directive, saying this, “I have lived my life to now, in the shadow of knowing I might develop this disease. However, I determined not to get tested until age thirty-five, on the basis that I did not want a diagnosis to stop me living. I feel I’ve lived my life to the fullest and I hope there’s plenty of good life ahead of me. I do not like to be dependent upon others for anything. No thirty-five year old would. I’m very self-reliant, a life of complete dependence upon others is an intolerable prospect to me. If I’m dependent upon others for activities of daily living, then my preference would be to be allowed to die of natural causes. For example, not to be treated with anti-biotics for pneumonia. I do not want to end my days as my Nanna did, living in aged care, distressed, confused, agitated or as my father did – in trouble with the police, alienated from family. I am aware that as the disease progresses, I might form different views to those communicated above. I therefore propose to review this document on an annual basis and confirm that these remain my preferences and values.”

Now, if you’re an advanced care planner, you’d just love somebody like Bradley. [Laughter] What a reasonable lovely, thoughtful man he is, doing all the things that advanced care planners would say that he should, which is to talk …. to think about the views of people who care about him but whose views might be different. To entrust the person who is closest to him in life, with information that will best equip her to see that it’s a dynamic process. He’s not symptomatic. That’s not what … he’s not been diagnosed because he was symptomatic. He simply knows that this is his fate ahead. Don’t know what decisions he’s making about having a family now but, you know … these are the … as if anyone could do an advanced care directive in the light of that information but it’s different to a diagnosis of a different sort of disease for the very reason he’s lives his life, knowing there’s a 50% chance he could of … this was going to be his fate. Sorry, I didn’t have that up before when I read it.

So, imagine that you’re Arlene. Is this helpful for Arlene?

Male Speaker

Yep.

Claire McNamara

Because, not only did she have this document that he’s troubled himself to go to get two witnesses to certify that he had decision-making capacity at the time. He understood what it all meant. He’s also indicating, you know, he’s going to review it and he’s talking to her. So, in the legislation, it does allow somebody to have an expiry date in an advanced care directive. Why would you do an expiry date? If you have an … if it expires at a point when you’ve lost decision-making capacity, then it’s expired and maybe that’s when it needs to be in operation but it’s an option because it depends a bit on the circumstances that you might be doing an advanced care directive. I might do an instructional directive because I’m going into hospital for surgery, I’m going to have … I’m expecting rehab for a period of six weeks or so and I think I only want it to last for the duration of this issue, so I’m going to make it last twelve months. I don’t want it to actually be something that lasts forever.

Ok, let’s move onto Vlad. I changed the names around afterwards and I realised afterwards that the least convincing thing about this is that Denise and Malcolm, his parents, have called him Vlad. [Laughter] Anyway, Vlad was diagnosed with Motor Neurone Disease in November 2016. He’s immersed himself in medical literature about the likely trajectory of this disease. He’s spoken at length with his GP and neurologist. He’s spoken with his partner, Stan, about his fears, hopes and values. He’s alienated from his parents, Denise and Malcolm, who don’t recognise his relationship with Stan and voted no. He appoints Stan as his medical treatment decision-maker to avoid giving his parents the opportunity to contest that Stan is his domestic partner, when he can marry. There’ll be no contesting. He also completes an advanced care directive. He makes an instructional directive, as follows. So, his instructional directive is: “I refuse the following medical absolutely in all circumstances: artificial nutritional hydration administered via peg or nasal gastric tube and a tracheostomy”. More importantly, I think he goes on and say, look, I know obviously read red font. It wasn’t a great idea. It’s just our corporate colour. [Laughter] “In relation to medical treatments, other than those specified in my instructional directive, I consider that my partner, Stan, would be best placed to make decisions for me. I know that my condition is terminal. Although I currently value my life, I do not want treatments that might prolong my life, at the expense of my comfort. I fear many of the likely consequences of the trajectory of my disease – incontinence, loss of verbal communication skills, double incontinence, in my ability, I recognise, however, I may adapt better to these consequences than I currently anticipate. If I lose decision-making capacity, then I trust that Stan will assess my ability to manage these stages of the disease progression and to make medical treatment decisions accordingly. Unlike my parents, who hold a firm religious view that life is sacrosanct and all life sustaining treatment should be accepted, I think there are limits. I think it is difficult for me currently to set those limits, except for those matters detailed in my instructional directive, but trust Stan to do so. Knowing that we will continue to explore these matters over the coming months and years. I consent to Stan sharing news about my medical condition and any decision he makes with my parents but I do not consider that my parents can meaningfully contribute to any discussion about what my preferences and values are. I hope, ultimately, that they can respect my life and death choices.”

Okay, so what I have tried to do here, in my imagination, is create a story that becomes a respectful way of communicating with his parents because nothing in here to say that he doesn’t love his parents. They hold different views but it is incredibly difficult for family members when medical treatment decisions are made, which are inconsistent with their own and the person might think they’ve go to fight, fight, fight for them because that’s what a parent should do and so, what he’s doing in a very respectful way, is taking charge of managing his relationships and expressing his autonomy.

Do people agree? You don’t have to.

[Muffled responses from the audience]

That’s what I think is more helpful, than just saying something like, you know, I don’t want treatment if I don’t recognise family and friends because, for me, I haven’t learnt anything about that person and as somebody who visits a person with advanced dementia on a weekly basis and people always say, “does he recognise you?”, I don’t know. I mean, it’s just not possible to know and doesn’t matter. I mean, you know, people think that’s the question but it’s not necessarily.

Okay, so my last bullet point there is does this have the feel of being a product outcome of an ACP process? Well, to answer my own question, I think it does because what you can see is he’s got the diagnosis. He’s worked through the shock and horror of the diagnosis. He’s done some reading. He’s informed. He’s spoken with his partner and he’s really left most of it in a values directive. Now, there might be some question about the instructional directive still not being … I would still … that expression, “in all circumstances”, I’d probably still want to say to someone can we imagine a situation where a health practitioner is going to have to look at this instructional directive and wonder whether, when you said, “in all circumstances”, you actually meant this circumstance?

Okay, Maude.

Claire McNamara

[Inaudible]

Claire McNamara

Yep

[Inaudible]

Claire McNamara

Well, the other part of the formulation in the medical … as a medical treatment decision-maker, firstly, you take into account a person’s advanced care directive and, if they don’t have an advanced care directive, then you take into account their values and preferences expressed any other way and you still do need to consider other matters but that’s the highest order. It’s actually quite a complex decision-making process if you’re a medical treatment decision-maker.

Okay, so Maude. Maude is seventy-seven, widowed for five years, as a son, Angus, who has a moderate intellectual disability, her older sister recently died, she has no other siblings. She has no one to ask to be her medical treatment decision-maker and is concerned there’ll be no one … there won’t be anyone to speak for her if she loses decision-making capacity. Lately, she has noticed problems with her memory, otherwise, she’s in good health. So, what I’ve put in Maude’s advanced care directive is what I pretty much think people are going to do if they don’t get a little bit of support along the way to tell more of a story. So, she doesn’t want to be resuscitated. She doesn’t want to be sedated, she doesn’t want to go to a nursing home. Well, she can put that in this but, obviously, it’s not a decision for a medical treatment decision-maker. She doesn’t want to be kept alive if she can’t walk, talk, toilet herself or feed herself. Well, we don’t kill people because these things happen, you know. [Laughter] So, that’s unclear. So, what is she really saying? That she doesn’t want certain treatment and I do want to donate organs for transplantation and my bodily remains to medical science. So, I realise the vast majority of people in this room haven’t seen the advanced care directive template form that the Department has been putting together, although, I’m sure many of you have been consulted about it but it does include the option for people to indicate whether they are in favour of organ donation. So, in my view, you can use your advanced care directive for purposes that are broader than the Medical Treatment and Planning Decision Act because it can be a place where you can communicate all sorts of other things in the way that people clearly do in wills. It’s not very helpful in your will to have information about what sort of medical treatment you want because it’s all just a bit late but people do put things in their wills, you know, like their preferences about who would be the guardian of their children. You can’t give your children away but, you know, like all those things you can put in wills and, similarly, people can be a bit creative about what they put in an advanced care directive. So, we’re just about done. I’ll let … perhaps I’ll just do this last one, if anyone … then we can use those last couple of minutes for questions.

So, the last one is trying to think about it from the point of view of my colleagues at OPA who make decisions for people who don’t otherwise know. So, Chau had a stroke, had a naso-gastric tube put in as an emergency procedure. Now, a peg feeding tube is recommended. So, she doesn’t have anyone to make decisions for her. We’re making the decision. She says, “I don’t want to be kept alive by machines and have tubes and needles coming out of me. I could not tolerate life if I could no longer enjoy eaingt healthy foods, bushwalking, gardening, reading. I don’t want to have a lingering, long dying process like my brother, Ang, endured. I fear lack of independence. I am a fiercely independent person.” Now, I don’t find that especially helpful but the next sentence, “I think doctors sometimes offer treatments when it would be better not to do so. I don’t want treatments, where the burden of the treatment results in a loss of my independence and functions.”. That’s much more explanatory. When I put this example to my colleagues at work, Advocate Guardians, and said, “if you had something like this, would it help you make a decision?” and they all nodded furiously because, often, they don’t even have this much. So, this isn’t even the world’s greatest advanced care directive but it’s better than probably generally, you know, what most people. Sorry, I cut of …

Speaker

[Inaudible]

Claire McNamara

You can write as much as you want. I mean, the problem, the problem … my concern about forms is that people think that the form drives the process, whereas I think the form should be the outcome of the process but, yes. I mean, essentially, it asks … it asks some open questions but you can put in as much as you want. Be as verbose as you want. Make your point as clear as you can but, as these examples show, at least the position I’ve got to, is that emphatic language isn’t always clear language and that’s really what you’re trying to test with anyone.

So, I’m about to finish because everyone is actually meant to be in another … are we finishing now or do we still have questions … yeah …

Speaker

Maybe a couple of questions.

Claire McNamara

Okay, maybe if we have time for one or two questions and then everyone is meant to be somewhere else very quickly.

Speaker

In regards to organ donation, is there a conflict with [Unclear 49:17] as well as medical treatment [Unclear 49:21]

Claire McNamara

Yep, the question is about organ and tissue donation, which sort of goes across a few pieces of legislation, actually. So, the Human Tissue Act is the main piece of legislation that governs tissue donation. So, no, the Act still applies. The reason that you would want to put in, you know, in my case, I’m a registered organ donor but I might just want to write on my medical … if I was doing an advanced care directive, I might just want to write it again to cross-reference it because it’s an expression of my autonomy. There’s also … yep.

Tissue donation, live tissue donation is governed by the Guardian for people lacking capacity to consent, governed by the Guardianship Act still. Yep. One last question, yep.
Charlie Corke

Can I take you back to the first case? So, the woman on her scooter …

Claire McNamara

On her scooter?

Charlie Corke

That goes into the road and gets run over. To me, that was a pretty clear instruction not to try to resuscitate her because she’s seriously … she looks like she’s going to die. What would be the attitude of the Office of Public Advocate [Laughter]. So, medical practitioners who don’t treat her or medical practitioners who do treat her because we’re in trouble both ways here, it looks like.

Claire McNamara

The Office of the Public Advocate doesn’t give legal advice [Laughter]. That’s how we’ll deal with it.

Charlie Corke

[Inaudible] Who would you criticise the most? The practitioner who treats her or the practitioner who doesn’t?

Claire McNamara

I think, if a practitioner is acting in good faith ..

Charlie Corke

Both of them are in good faith.

Claire McNamara

… and [Laughter] … there’s always a … a decision reached can … the decision I reach reasonably. You could reach a different decision reasonably. You need to be able to establish that you reached your decision reasonably, even though … yep, that’s how I think I would see it but …

Charlie Corke

So, we can conclude that both the people that treat her and the people who don’t treat her are reasonable.

Claire McNamara

I … in that particular example, it seems to me she doesn’t need …

Charlie Corke

She does, unfortunately need to …

Claire McNamara

Oh, she does … she has to be intubated. It’s incredibly difficult but I still think you could read into … I think there’s the possibility of ambiguity to say I’m reading that in light of her saying that she has MS, not in the light of her being in a road accident.

Charlie Corke

[Inaudible] is it reasonable if I don’t?

Claire McNamara

Well, let’s leave … let’s leave that one for lunch. Okay, everyone go! You’ve got to go somewhere else. [Laughter]

[Applause]

Dr J Chesterman

We move onto our next presentation, which is from Dr Jenny Hynson and Professor Lynn Gillam. Jenny is an Associate Professor and Consultant Paediatrician with the Victorian Paediatric Palliative Care Program at the Royal Children’s Hospital in Melbourne and Lynn is the Academic Director and Clinical Ethicist at the Royal Children’s Hospital of Children’s Bioethics Centre in Melbourne and an important point to note about the new legislation is, of course, that children can create instructional directives, where they have the capacity to do so. So, with that note, I’ll hand over to our guest speakers. Please make them welcome.

[Applause]

Dr J Chesterman

Sam, if you could just call up the …. just push the right one. That’s it.

Dr J Hynson

Technology is not my thing, I’m afraid [laughter]. Alright, so I’m going to speak for the first half and then Lynn will join us and talk about some of the challenges that this presents. So, my role is to give you a bit of an overview about what the Act provides for people under the age of 18, which we’ll refer to as young people, whether they be in a paediatric setting or an adult setting. The circumstances in which this new capacity can be useful and, as I said, Lynn will share with us some of the challenges that we’ve thought of.

So, I just wanted to do some reflecting on the paediatric context. Just to provoke some thought about the differences and none of what I’m going to say to you is exclusive to paediatrics but it’s some of the things that we come across when we’re dealing with parents and young people. This is a photo of a very well-to-do Mum, middle class Mum from Notting Hill in London, whose little boy had a brain tumour and she basically wanted to try some alternative therapies with him, but he had a brain tumour that had a reasonable chance of cure. So, there was some fighting and discussion, and, in the end, she ran away with him and hid but the courts ruled that he should be brought back and have treatment. So, I’m really just highlighting and it’s a harsh reality in paediatric practice that the needs of parents and needs of children are not always aligned or the same and it does make it difficult sometimes for parents to make good decisions for their children. At the core of what we deal with, I think, is social models of what a good parent is when a child is very sick and what I see in my work, is parents wrestling with this question. Do you mortgage the house and go and seek that alternative therapy in Mexico or do you prioritise your child’s comfort? What is the right thing to do? What does the community expect of you? What do you expect of yourself and there’s not really social models around that and every parent has to work that out for themselves and you can only imagine the conflict that must go on in their mind. We now can rescue a lot of children from death and we can delay death by setting up little mini ICU’s at home and encouraging parents to become life support systems for their children or to extend that role and that becomes very difficult later on when perhaps that role needs to change or there needs to be different priorities for the child. This little baby will grow up, at some stage, and parents will have to make a decision. It’s very hard to turn yourself off, if you’re the life support for your child.

We deal a lot with notions of hope, as I’m sure many of you do in your work but also, miracles. Certainly, the institution I come from is very keen to talk about miraculous therapies and I don’t begrudge that at all but sometimes there can be an unbalanced message about what’s possible. So, miracles play on families’ minds a lot and then finally, to bring a sort of more into the world of advanced care directives, we’re dealing with children who are growing up and developing autonomy and, often, these children have a lot of experience with illness and losing friends to the same illness and observing what goes on in a big hospital ward. So, they’re very knowledgeable about what’s going on and have a lot of experience of being unwell. So, they really do need to have a role in the decision-making and, of course, any of you who are parents of adolescents will know about sometimes they just want to make a decision because you don’t like it. So, we have to think of that as well. Realistically, in the paediatric context, even with adolescents, most of the decision-making through an advanced care planning process, where parents and children and doctors and nurses and allied health teams sort of work it out together and they may or may not document decisions if they’re reached and those documents, importantly, are part of the medical record and they’re a communication tool but they’re not enshrined in any sort of legislation and they’re not enshrined in this new legislation either but there is an important piece that is now enshrined and I’ll talk about that in a second.

The other concept that is really important is that parental decisions about medical treatments are not binding and can be challenged and overwritten. So, the new Act provides for a young person, regardless of age, who has capacity to actually make a directive, just like the ones that John has been discussing. So, a values directive or an instructional directive that is legally binding and would be binding ahead of anything that a parent wanted. So, this is a really huge change. A very big deal for us and we have to be really careful about how we operationalise this. There is no lower age limit but, just to give you a sense, realistically, we would not be expecting a young person under the age of 14 to have capacity.

So, the other thing that can be provided for is that a young person can appoint a support person, just like John described, who may be another young person, which is interesting, but they may not appoint an alternative medical decision-maker. That role defaults to the parents if the young person loses capacity. So, the most crucial aspect of the legislation from our point of view hinges on the assessment of capacity and it’s a very, as I say, I want to emphasise what a huge thing this is - what a huge responsibility this is and, if we assess that a young person has capacity, they can make very significant and binding decisions. So, we have to be very careful and we’ve thought very hard about who should be able to do this, and I’ve just really sketched out the kinds of professionals that can do it. There are obviously a lot more details in the regulations but, essentially, a child and adolescent psychiatrist or a neuropsychologist, working in a paediatric setting.

So, the things to think about are that the young person needs to have capacity to think ahead, to project forward and to make a decision that will be binding in the future which, again, is a really big thing and sometimes adolescents have unstable decision-making processes. What I’m saying is they can change their mind and they need to understand the significance of each individual decision.

So, I’m going to hand over to Lynn now. She’s going to talk about under what circumstances this might be useful and some of the challenges.

Professor Lynn Gillam

Sorry, I’m just getting instructions on the zapper and I’m not very good at left and right. So, one of the things we’ve been thinking about is when might this provision for a young person to make an advanced directive actually be helpful in their care. So, we’re thinking … and we tried to think about that, in terms of particular scenarios and features of a scenario. So, it seems likely to be of use where, as Jenny was pointing out before this, there’s a situation where we might expect some sort of misalignment between what the young person would want and what the parents might want and, I guess, Jenny’s aware of some situations in which you can see that that is coming or that might exist at the moment and, also, whether the young person currently has a life-limiting or a life-threatening condition. So, we’re probably not talking about young people who are currently well because there would be no particular reason for them to anticipate needing an advanced directive. It would also have to be a situation in which there’s reason to think that that young person would potentially have capacity to make the advanced directive and this is going to be one of the tricky things. There’s no point in offering an advanced directive to a young person if it looks like they’re not going to have capacity to make it when they’re formally assessed and it would also need to be a situation in which it is reasonable to envisage that the young person might lose capacity probably in the relatively short-term future before they become, essentially before they become an adult and have the opportunity to make an advanced care plan in an adult type setting. So, guess we’re mainly envisaging a paediatric setting but we’re also very aware that many adult facilities have patients who are under the age of 18 who may have come through a paediatric setting or who may not have. So, there’s a number of different ways, I guess, that we can get to this position. So, with those general features in mind, here’s a possible scenario. So, we’re thinking about a 16-year-old who has a cancer, who has had treatment for that – a brain tumour and had surgery, chemotherapy, radiotherapy. The tumour is progressing and, as is often the case these days, the next thing to try is an experimental treatment which has not very good evidence of benefit, so it’s very much a last resort but the young person’s parents are very very keen to try everything to keep their child alive as long as possible. The young person, on the other hand, is already saying explicitly, for example, to nursing staff who are looking after her that she has really just had enough, and this is someone who has been through a lot and has seen other young people die around her. So, very aware of what the circumstances are and what it means to say I’ve had enough and, also, is in the situation where she may lose capacity at any time. So, a brain tumour puts her at risk of having a bleed into the brain at any point and, if that happened, she may be rendered completely unable to communicate or, at least, that may affect her cognitive functioning so that she could actually lose capacity.

So, that might be a situation in which it would be helpful and beneficial for Rosie, that young person, to have the opportunity to make an advanced care directive if she wanted to and that could be a values directive, just saying this is what’s important to me, these are the things I value, these are the things I don’t want or she might even want to make an instructional directive where she says, ‘I do not want any further chemotherapy’.

Does that make sense? Yeah? But that’s probably going to be a fairly rare circumstance. We’re not really sure and this is one of things that we’re trying to think through at the moment. The other thing we’ve been thinking about is whether there might be a place for this provision for advanced care directives in our hospital standard transition program. So, we have young people with chronic long-term illnesses, you start off in the paediatric setting and then go through a formal transition process into adult care. So, some example might be young people with cystic fibrosis with muscular dystrophy, diabetes, a number of other conditions that are going to essentially to be life-long. So, we could think about whether talking about advanced care directives, as part of talking about learning to manage your own care and preparing for life in an adult hospital. Perhaps, advanced care directives could be part of that discussion, which wouldn’t necessarily mean that the young person would make them at the age of 16 but to start thinking about that and being aware that it’s one of the options that are open to them.

So, there’s two sorts of circumstances in which we can see that this option for under 18s to make an advanced care directive could be relevant and useful and helpful but there are clearly going to be some challenges and Jen’s alluded to some of those already. One of things that’s different here is from the adult setting is the question of who to offer this process to. So, if we’re thinking about adults and I think John said before, we assume every adult is competent or has capacity, unless demonstrated otherwise but we don’t assume that of teenagers. So, the question of who to offer it to becomes a much more difficult question and we’ve got the parents there, in a way that we don’t have someone in the position of the parent, for an adult, feeling that essentially, they should be in control of the decision-making process. So, by the time Rosie got to be 16 with her brain cancer, her parents have been making decisions for her all along. To now broach to her the possibility that she could make an advanced directive, which would set in place a decision that her parents don’t agree with, is quite a big step to take. Is it okay to do that directly to Rosie? Can Jen talk to Rosie? Or, does Jen need to talk to Rosie’s parents first and say is it okay to discuss this with your daughter, knowing that they might say no but she has a legal right to … she presumably has a right to have access to that thing that is legally available to her and, related to that then, as Jen has already alluded to, is this very complex question of how to assess capacity of a young person who doesn’t have a life history of stable values but is still growing into their own lives. So, there’s a question of on what basis are they going to make a plan for the future, when they don’t necessarily have a really good sense of what their future would be.

We can envisage situations in which parents would strongly disagree with an advanced directive that a young person has made and might want doctors to disregard it. We already know that the legislation has provisions for disregarding an advanced directive. It’s possible that there would be lots of pressure and we need to really think through how we would manage those situations and then there’s questions about how much effort to put into looking for the advanced directive of a young person if there’s not an expectation that every young person is likely to have one, in the same way that there might be for an adult and how the support person would work in practice and how they would relate to the parents, particularly if the support person appointed by the young person is another young person or even potentially a child. There doesn’t seem to be any requirement to assess the capacity of the support person. So, that could be the 10-year-old sibling. So, how is that going to work? So, those are a lot of implementation challenges about how it’s actually going to work in practice but, I guess, our main message today is that this is a really big change and something that we can see benefit for, but we also need to think through very carefully. So, thank you very much for your attention and, I guess, we’ve got time for a couple of questions, do we?

Speaker 1

Yep.

Professor Lynn Gillam

Great, thanks.

Dr J Chesterman

We’ve got a roving mic, I think. Any questions for Jenny or Lynn? There’s one right down the front here. Thanks, Sarah.

Speaker 2

Hi, I’m from the Mt Beauty Hospital. Would there be a legal obligation for you to offer this to the child?

Professor Lynn Gillam

That is a really excellent question. Shall we ask John? I don’t think that the legislation says that there is a legal obligation for us to offer, does it? The opportunity to make an advanced directive.

Dr J Chesterman

That’s a kind of a … I mean, you can ask the same thing about the general population. Is there an obligation to offer? There’s no duty to offer this but you have to think about it as kind of a professional obligation in providing care for someone, whether this is something that falls within in that. It’s not in the legislation.

Professor Lynn Gillam

So, that’s exactly what we’re wondering. Is it our professional obligation in all circumstances or only some circumstances and who decides on the circumstances?

Dr J Hynson

I’m leaping up to the stage because sometimes these things can take on a life of their own and everyone feels like they need to rush in and start offering advanced care directives to young people. I think you have to be very very careful and I think, you know, parents don’t always get it right, but they do know a lot more about their child than we do. I think we have to be very careful about leaping into a family culture and doing something because we think that we have an obligation to do it. You might really mess things up quite a lot. [Laughter] I think it requires exquisite judgement and not a blanket kind of …

Dr J Chesterman

We just have two more questions. Bear in mind, you can also be texting your question and come to it later on during a whole panel session. So, just these two questions and then we’ll move on.

Speaker 3

I’m from Western Health. Isn’t this, though, a question of Gillick competence? I mean, you would assess as a Gillick competence issue and, if there is evidence of an advanced care directive, that to some extent might be during considering whether or not they may be judged as having competence under the Gillick competence test.

Professor Lynn Gillam

So, I’m very conscious that there are lawyers in the room, so let me try and answer.
[Laughter]

So, competence … Gillick competence is your idea of capacity to make a decision by a young person and that is in the context of agreeing to recommended medical treatments. So, having the capacity to agree to recommended medical treatment is potentially different from and less than capacity to make a decision to refuse treatment in the future. So, I think the bar is going to be higher if we accept the idea that judgement of capacity relates to the type of decision that you’re making.

Speaker 3

I don’t disagree with what you’re saying. If they have an advanced care directive in place, it’s the fact that it can be taken into account in a similar way that you might assess competence under the Gillick competence test. They may actually have the competence to make those decisions in their own right. That’s what I’m saying. I mean …

Professor Lynn Gillam

The fact that they have an advanced directive is evidence that they’re competent.

Speaker 3

Not only, it’s one of the factors you might take into account if they’ve shown some ability to take into account their own care needs and make a judgement about that. I’m just asking that question [unclear]

Professor Lynn Gillam

Can I think about it a bit more and get back to you because they would have to be formally assessed as having capacity, in order to make the advanced directive?

Dr J Chesterman

And, indeed, Lynn is on the panel later on. So, there’s an opportunity for you to have another say later on and people can ask questions about this. Just quickly, that last question. Just if it’s a quick question, we might take it on notice otherwise,

Speaker 4

It is a quick one. I’m from South West Health Care in Warrnambool and I’m just thinking that, from a regional or rural perspective, we’ve got a lot of young people with life-limiting illness, who don’t even make it down to the Royal Children’s or it was years ago that they went to the Royal Children’s and their main care is now a general paediatrician in Warrnambool and, if that young person, that 16 year old, wants to make an advanced care directive, will they have to come all the way down to Melbourne to see a Neuropsychologist or a Paediatric Psychiatrist of the likes that we don’t have in regional Victoria to make this advanced care directive?

Professor Lynn Gillam

Great question. We’re really mindful of it and, clearly, if it’s going to work, they have to be accessible in a way and my short answer is telling that … yes, Jen’s nodding at me. So, there’s got to be some way to make that possible.