- 04 March 2018
- Duration: 51:51
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.
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?
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?
How do you [inaudible]
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”.
Could be a doctor Australia has [Unclear 32:53]
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
Can I just … going back to our earlier discussion about attempted suicide. If he actually attempted suicide, you know that would change the circumstances.
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.
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.
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.
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?
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?
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 …
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 …
Maybe a couple of questions.
Okay, maybe if we have time for one or two questions and then everyone is meant to be somewhere else very quickly.
In regards to organ donation, is there a conflict with [Unclear 49:17] as well as medical treatment [Unclear 49:21]
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.
Can I take you back to the first case? So, the woman on her scooter …
On her scooter?
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.
The Office of the Public Advocate doesn’t give legal advice [Laughter]. That’s how we’ll deal with it.
[Inaudible] Who would you criticise the most? The practitioner who treats her or the practitioner who doesn’t?
I think, if a practitioner is acting in good faith ..
Both of them are in good faith.
… 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 …
So, we can conclude that both the people that treat her and the people who don’t treat her are reasonable.
I … in that particular example, it seems to me she doesn’t need …
She does, unfortunately need to …
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.
[Inaudible] is it reasonable if I don’t?
Well, let’s leave … let’s leave that one for lunch. Okay, everyone go! You’ve got to go somewhere else. [Laughter]
This presentation provides a series of scenarios discussing how a person's advance care directive should be interpreted in certain circumstances.
Presented by Claire McNamara, Senior Legal Officer at the Office of the Public Advocate
Reviewed 04 March 2018