This presentation discusses the role of witnesses in relation to creating an advance care directive (for both adults and children) and appointing a medical treatment decision maker or support person. The presentation provides scenarios where the role of a witness may be unclear or complex.

Presented by Claire McNamara, Senior Legal Officer at the Office of the Public Advocate; Dr Barbara Hayes, Clinical Lead - Advance Care Planning at Northern Health; and Sonia Gardiner, Senior Medical Treatment Decision Maker at the Office of the Public Advocate.

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]