Advance Care Directives & The Law

Sammi: Good evening everybody and welcome to this evening’s Advanced Care Directives and the Law webinar. My name is Samantha and I am your host for this evening. Before we get started, I would like to make a quick Acknowledgement of Country. We recognise the traditional custodians of the land and sea on which we live and work, and we pay our respects to Elders past and present.

Okay, so I would like to introduce our presenters for this evening. So, we are joined by Associate Professor Joel Rhee. Joel works at the University of Wollongong and is a GP with a special interest in end of life care of patients living in the community and advanced care planning. And our other presenter for this evening is Ms Blaise Lyons. Blaise is a Principal Legal Officer with the New South Wales Ministry of Health. She conducts litigation, seeking judicial orders or guidance on medical treatment decisions on behalf of public health organisations, including cases relating to the withdrawal of treatment at the end of life and cases relating to providing treatment to minors when parents object. Blaise also manages New South Wales Health Clinical Negligence and Coronial Practice through its external legal panel. She advises on all medicolegal issues such as consent, advanced care directives, organ donation and all civil litigation. So, thank you Joel and Blaise for joining us this evening.

I will hand over to Joel now to take us through the learning outcomes for this evening and we will then move on with the rest of the presentation.

Joel: Excellent. Thanks very much, Sammi. Good evening everyone. Thank you for joining us and for the next 58 minutes or so, I think we will be spending a very useful 58 minutes just thinking about advanced care directives and how it relates to the law. So just a few learning outcomes. So, hopefully by the end of this activity, you should be able to discuss the role of an advanced care directive and advanced care planning with patients. Secondly, we should all be able to identify when an advance care directive will apply. We should be able to list resources that can assist in initiating end of life discussions and we should be able to assist patients with preparing their advanced care directive. So, just a few modest goals for the next 57 minutes now.

So, just moving onto the next slide. So, just a bit of a brief introduction on advanced care planning. So, advanced care planning is an important process allowing patients to plan for future care for a time when they are not able to make their healthcare wishes known. So this process involves a patient thinking about their values, beliefs and wishes and it is best done really if advanced care planning happens earlier in life when a patient is still well and creating an advanced care directive can be part of advanced care planning. So, it is clearly a very important thing to do. I just wanted to ask Blaise about her thoughts on advanced care planning and, yes, in your experience how important is advanced care planning?

Blaise: Hello everyone, good evening. Advanced care planning is extremely important. We have seen research studies which show that what constitutes a good death for patients includes feeling empowered and feeling involved and somehow in control of some of the decisions and this is really, particularly advanced care directives is a really important way that patients can do that.

Joel: Yes, definitely. And it is something that often is not done commonly in my experience. Is it?

Blaise: The feedback we have is that it is very difficult to initiate a discussion about somebody’s prognosis when it is very poor and that people are reluctant to have a very difficult conversation. But we have also seen that the benefits of doing it probably outweigh, if you can get over the difficulty of doing it, the benefits for the patient and also the benefit for the clinicians caring for the person at the end of their life, really outweigh the difficulties.

Joel: Yes, definitely. So, what we might do is we might make it interactive and ask our GP participants about their experience in advanced care directives. So, we are going to have some polling questions.

Sammi: Fantastic. That is right Joel. I am going to launch two polling questions back to back now, just to gauge I guess a bit of a feeling from our participants on line. One of the questions we will be asking you again in the evaluation survey in the hope that those who answered “no” are now answering “yes.” So I am launching that first question for you now. So that first question is, in the last six months, have you assisted a patient in competing their ACDs? Alrighty, so let us close that one off now, so that is great. I will just share that with you quickly. So you can see there that 44% of people said yes, and 56% said no. So I will launch that second question for you now. Okay, so that is now up on your screen. And this one is, do you currently feel confident in discussing the ACD with your patients? Again, a simple yes or no. So I will share those results again so you can see as well. So we have 60% of people said no, they are not currently confident in discussing the ACDs with patients. So that is great for us to know jumping into this webinar, so I will close that off now and hand back over to Joel to continue with the presentation.

Joel: Thanks, Sammi. Yes, so hopefully by the end of today’s session, we will all be much more confident about discussing advance care directive with our patients. So, I just want to draw your attention to New South Wales Health website, and there is a page on advanced care planning. So if you, I do not know whether you can actually see the link down below which is – I do not want to read that out.

Sammi: That is alright. We will post all the links. They will be in the resources in the post-webinar email. So if you cannot see it, you will get it and a copy of the presentation in the coming days.

Joel: Excellent. So it is a really useful website. And you can see that there is a range of resources there for GPs and for our patients, and this particular screen shows a bit of information about what is advanced care planning and there is a brochure that has been produced by New South Wales Health trying to explain advanced care planning to our patients as well. I think what I can see here, which is really important, is that advanced care planning is relevant not only for people with terminal illness, and it is, I mean a couple of slides ago we did discuss how advanced care planning should happen earlier in life, but it is not just about even conversations that relate to end of life care, but it is about care that happens when a person no longer has decision making capacity. So, it is relevant for many people, most people in fact. Many of us will be affected by chronic diseases or major illnesses. We might be hospitalised. We might develop dementia later on in life. We might be hit by a bus, who knows. So it is going to be relevant for most of us. So, something to think about when we are approaching advance care planning with our patients.

So, an important question I think we sort of discussed a little bit earlier, is initiating end of life discussions and sometimes it could be, we might become a little reluctant to be raising these issues with our patients. And sometimes I think as GPs we might fear that the patients may not react well to us bringing up this topic or perhaps it might lead to complaints or disputes or you know, legal issues sometimes.

Blaise: I will just jump in there. The cases that I see are where at the pointy end where there is conflict at the very end of life, and in lots of cases that is conflict between family members or family members and clinicians, and in a lot of these cases a lot of that conflict could be reduced or even avoided if there had been clearer planning and the patient’s family had been better prepared and better aware of what the patient would have wanted.

Joel: Yes, definitely. It is that certainly raising these issues and discussing it is, is preferable to not discussing it and leaving it till too late. And in Australia, patients do have a right to be informed about their condition, prognosis and treatment options. And we commonly think of this as informed consent, but I guess sometimes informed consent we tend to think of in regards to surgery or some sort of procedure, but I guess it applies to nearly all the medical practice, doesn’t it?

Blaise: Absolutely, yes.

Joel: And so, and I think it is not a matter of whether we raise these issues with patients or not, but rather how we raise it, isn’t it?

Blaise: Yes.

Joel: Yes, yes. So obviously having a sensitive and inclusive conversation does help a lot. And I trust that you know, all our GP participants here would have or they are very familiar with how to raise some of these topics with our patients and through general practice training and ongoing professional development there are opportunities for us to attend various training if you are unsure about how to communicate about these issues as well. So, something to keep in mind.

So, we are going to switch tack and we are going to focus on advanced care directives. So we have been looking at the whole wider issue of advanced care planning and end of life discussions. But now we might think about advanced care directive. So, an advanced care directive allows a patient to identify what healthcare treatments they would like to have or refuse, and also it records the specific wishes of a patient regarding future care, and importantly can only be made by an adult with decision making capacity. And it must be followed if it is valid.

Blaise: And that is different from how you might approach advanced care planning where the patient might not have capacity and the planning is done with their family members. The main difference legally between an advanced care plan and an advanced care directive, is that the directive is done because it is done by the patient. If it is valid, then it is a legal direction about their future care.

Joel: Yes, and Blaise, the third point here, so second, first point, yes first point here, talks about it allows a patient to identify what treatments they would like to have, or refuse. So, one of the participants today asked a question. Can a patient be declared NFR on medical grounds by their doctor, if family wants everything done? So, this one is not strictly about advanced care directive, but it does raise the question of, if an advanced care directive contains wishes for having certain types of treatments, then what is the obligation of the doctors?

Blaise: There is no legal obligation for doctors to provide treatment that is clinically futile, or where the burden is going to outweigh any benefits. So there are limits to what a patient can request in an advanced care directive. They cannot request treatment that is not clinically indicated.

Joel: Sure, sure. Okay, so that is good to know, isn’t it? Yes. And, so it can only be made by an adult with decision making capacity and Blaise already talked about what happens if you know, if we have to create a document for other people. So we might move on to the next slide.

Blaise: Okay, so the starting point for any discussion about law and medical treatment is always about consent. Because obviously providing any treatment without consent is going to be unlawful. Adult patients with capacity have a right to decide what happens to their own body, just as they have the right to consent they have the right to refuse any treatment, for any reason, even if that reason is irrational or seems to be irrational and even when that decision might lead to their death. This right extends to all medical treatments, including ventilation, CPR, dialysis. I will just add in antibiotics and things like artificial feeding because sometimes there is a bit of confusion about whether those qualify as medical treatments, and they absolutely do. The quote on the side there, the paramount consideration is that a person is entitled to make his own decisions about his life. That is from I guess, still one of the most important High Court cases on medical treatment in Australia. And that is one of the authorities that we must support patient autonomy.

Joel: I remember reading about that case in medical school, yes.

Blaise: There are not many that get to the High Court, so they do tend to stand out. We have had a few cases in New South Wales, not very many, that have made it very clear, the judgements that have made it very clear, that a competent adult patient can refuse any treatment. And this case that is on this slide here also confirms that patients can refuse treatment using an advanced care directive. And this was a care where the patient had signed an advanced care directive and he was admitted to hospital. He became incompetent, was unconscious and was placed on dialysis before the hospital became aware that he had an advanced care directive. And about a week later, his friend brought it in, and at that point the hospital came to us and wanted to know whether it would be lawful for them to comply with the advanced care directive which refused dialysis, and therefore lead to Mr A’s death. And because we had not had a case on this before, we asked the Supreme Court for a declaration that it would be lawful to comply with the advanced care directive. And the Court found in this case, that Mr A’s advanced care directive was valid and should be respected, and confirmed that if an advanced care directive is made by a capable adult and is clear and unambiguous and extends to the situation at hand, then it must be respected. And in fact it would be unlawful to disregard the advanced care directive. So, this is really the authority or legal authority behind the use of advanced care directives in New South Wales. Lots of other states in Australia have specific legislation. We do not have legislation in New South Wales, but we do not need it because this is just as good as authority to back the validity of advanced care directives.

Joel: Excellent. So, Blaise, just one or two questions about that particular case. So, in that case and the advanced care directive in that case, did he use a particular official form?

Blaise: He did, actually. It was two worksheets that were prepared by the Jehovah’s Witness Church, although Mr A was not a Jehovah’s Witness, he just used that form. It was extremely detailed. It had huge lists of potential treatments and ticker boxes. So it was very, very clear what he did and did not want from looking at it. And in order be satisfied that it was still an expression of his wishes because by the time the case came around, it was about 12 months since he had signed it, the judge contacted his close friends, spoke to them by phone and confirmed that it was still his current wishes.

Joel: Sure. And the patient did not speak with the doctor or anything about those wishes? Yes. So, that is, yes, so that is a very important case that Blaise just mentioned. So, so advanced care directive is clearly an important part of advanced care planning and legally it has been basically proven to be a legally binding document. And none of us will know what will happen in the future or can predict what might happen with our health. So once again, it is an important thing to do, and some patients might have firm ideas about how they want to live the rest of their life including conditions and treatment. And you know, some people might say, I never want to have a, you know, a cardiopulmonary resuscitation, and other people might have different views on where they want to live or what kinds of treatments they wish to or wish not to have. And I think an important thing which is coming up from various research studies, is that a lot of patients get involved in advanced care directives and advanced care planning because they, as a way to look after their family and to lift the burden on their family, because a lot of family members of patients might find it difficult to decide what treatment is best for the patient and especially when there is a crisis, you know they might feel very guilty, especially if they have to withdraw treatment. So having an advanced care directive in place is actually a way to care for them. So, a number of benefits for advanced care directive.

So, I think at this stage, I think we have had a number of questions. Blaise, do you think we should have a quick look at some of those questions?

Blaise: I think some of these questions we will actually get to. Some of the questions were, can an enduring guardian or a person responsible override an advanced care directive? The answer to that is absolutely not. Is there a standard document? Yes, and we are going to talk you through one of the options, the New South Wales template, shortly. Is there an age – can a healthy person have one? Yes they can. Is there an age limit? Yes there is it. There has to be. To have a legally binding advanced care directive, you have to be an adult so you have to be over 18. That is not to say that a young person cannot have an advance care plan, it is just that it will not be legally binding in the same way a directive is.

Joel: So, I guess in medical schools we get taught that 16 is the age of consent, but that does not quite apply.

Blaise: For consenting, well, the right of a minor to consent or refuse treatment can always be potentially qualified by a court.

Joel: Sure, sure, yes. So tricky. So over 18 is probably the best, isn’t it, yes. Okay. There is a question about what is the difference between advanced care directive and advanced care planning, or whether that is care plan? So, I could try to answer that quickly. So, advanced care planning is the whole thing. It is the whole process of discussion and thinking about it, and advanced care directive is a document that arises from advanced care planning. And advanced care directive is a form of a document that is legally binding. So that is the difference. Advanced care plan on the other hand, is basically a document that can arise, it does not even have to be a document, does it, it could even be like a video recording or something like that as well, but advanced care planning can be done by the person or it can be done by someone else, so not a random person off the street, but the person responsible or the person’s enduring guardian, and it basically contains written instructions on what can or should not be done for the patient, but it is not legally binding. Is that right, Blaise?

Blaise: Yes.

Joel: Okay. Sure. So we might move on. So helping patients prepare to make an advanced care directive. So I think GPs and other healthcare professionals and other healthcare professionals can obviously include people like practice nurses in fact, and also specialists and social workers. So a lot of people can actually assist in this process, but we have an important role in providing information to patients regarding their health and their condition, because although people can prepare advanced care directive on their own without any help from anyone, it makes sense for them to actually get healthcare advice, doesn’t it?

Blaise: It is also much more likely that an advanced care directive will be found to be valid and the clinician interpreting it at the end will be comfortable implementing it if it has been prepared with some professional advice. It will give an extra level of comfort and it will be more likely to apply to the patient’s particular disease process or their particular circumstances.

Joel: Yes, definitely. And it, involvement of GPs and other healthcare professionals can, other than just providing information, they can also encourage our patients to think about their wishes and their values. So it is about encouraging them to have a think about it and talk to their family and friends about it. And I think another important thing that GPs can also do, is getting the patient to also basically identify the person that they would like to make decisions for them if they were to lose decision making capacity. So basically the person responsible, and I think that is really important because, especially if that the person the patient identifies, is different to what the law says is the person responsible.

Blaise: This slide here, I find there is a lot of confusion about what a person responsible is, and working out who a patient’s person responsible is, and a lot of people still use the term next of kin, which is very, you know, just adds to the confusion. The person who will make medical decisions for a patient that does not have capacity is going to be the person responsible. So that is an enduring guardian if they have appointed one. If they have not appointed one, and most people have not done that, then it is going to be their spouse. That includes de facto and same sex. If there is no spouse, it is a carer and if there is no carer, it is a friend or relative. So everyone needs to take a minute or be encouraged to work out who their person responsible would be on that hierarchy and if they do not like who they come up with, then they need to go an appoint an enduring guardian so that they can basically override this and have the person of their choice making decisions for them.

Joel: Sure. So, when it comes to unpaid carer, if a person, the carer receives Centrelink benefits for?

Blaise: A carer’s allowance is okay, but if the person is receiving payment under a commercial arrangement then no, they cannot be the person responsible.

Joel: Sure, sure. And the patient’s doctor can obviously be the person responsible.

Blaise: Yes, you would have a conflict of interest there potentially.

Joel: Sure, sure. Blaise, a question here is, if it is a relative or friend. Most people have more than one relative or more than one friend, hopefully. Or some people may not. In that case, who is the?

Blaise: This does cause us problems in hospitals. For example if somebody has three children and no spouse and then if those children disagree, then we go to a huge effort with family meetings and conferences to try and build consensus which is always the preferred option. But if there is real conflict between two people at the same level in the hierarchy, then the legal solution is to make an application to the guardianship division of NCAT and ask the tribunal to decide who should make the decisions.

Joel: Yes. Sounds like a bit of a process there. Okay, so obviously it is better to avoid that situation isn’t it, yes. So by encouraging the patient to complete an advanced care directive and to share their wishes with their family, and their close friends they could hopefully avoid this situation.

Blaise: Absolutely, yes.

Joel: Yes, excellent. So we have got a scenario here just to apply what we just learnt. So, it is a scenario of Sue. Sue is an 82-year-old woman living in a nursing home with advanced dementia. So, she is not able to communicate verbally. So she probably does not have decision making capacity anyway, but she cannot communicate. But, she has got a reasonable quality of life, and you expect her to live for another couple of years. And you are concerned about a swelling in her left leg and you suspect a deep venous thrombosis and you recommend the duplex ultrasound scan. And obviously depending on those results, you may decide to treat it. But at this stage, you decide that look, it is important to notify someone of the situation and get consent for the investigation and possible treatment. So according the front sheet of her notes, you see three next of kins listed, and obviously as Blaise mentioned, next of kin is not the best way to go about it, but some nursing homes will still use that. So Jake, who is listed first and Jake is the son, then Deborah and Kate. Now, there is a copy of the enduring power of attorney form, which is signed by the patient and her solicitor in the notes, so you can see that and Jake is enduring power of attorney. And the nurse sort of tries to be helpful and tells you that Sue used to live with Kate, who is the youngest daughter before coming to the nursing home, and Kate does visit her once a week. Jake lives interstate, so he really cannot visit more than about once or twice a year. But Deborah, we are not really sure where she is or what she is up to. So, the question is, who are we going to contact?

Blaise: So, I think in this scenario, a lot of people might think that perhaps the eldest sibling would be the person that would have the authority over the others, which is not necessarily correct. Or perhaps think that Jake as the power of attorney would be the person to contact. But it is important to remember that a power of attorney only gives somebody decision making power over financial and legal decisions, it does not appoint, it does not give them power to make medical and lifestyle decisions. So those decisions need an enduring guardian appointment. So that is really not relevant to this situation. So, ultimately, because Kate used to be the carer, she really trumps her siblings as the most appropriate person responsible, because she is the one that has the most involvement with Sue’s life, and the reason why she will be the person responsible, she is the carer in the hierarchy, but also she is going to be the person with hopefully the best idea of what Sue would have wanted, because she has had that closer involvement.

Joel: Absolutely, yes. So, Kate in this situation is definitely the one to go for. Yes, so one thing that sometimes I think can be confusing for GPs is, especially when they are talking to their interstate colleagues, enduring power of attorney in some states might mean something different. Is that right, Blaise?

Blaise: Yes, sadly the terminology can be very confusing. And just to throw a spanner in the works, there are moves afoot to reform the guardianship act which might change the terminology for New South Wales as well.

Joel: Sure.

Blaise: Watch this space.

Joel: Just to make it more confusing for us. Yes. Okay. Just a question, Blaise, is an enduring guardian appointed in New South Wales, how does it translate interstate? Is it a thing that goes across states?

Blaise: It generally should, but it would depend on the legislation in other states.

Joel: Sure, sure, no worries.

Blaise: And conversely, if a person has completed an advanced care directive in a jurisdiction that has specific advanced care directive legislation and a legislated form, and then they come into New South Wales, we can accept – if it is valid – we do not care what form it is in, we do not care what legislation it has been created under, it can be valid in New South Wales.

Joel: Sure, good to know. Excellent. So, when does a valid advanced care directive apply? And I think just looking at the questions which are being asked by some people, a lot of questions are about this question. So, basic rule of thumb is that, not a rule of thumb but the rule, is that advanced care directive only applies when the patient loses capacity and is unable to express their healthcare wishes. So, it is not something that a person basically, I mean, if a person is able to communicate their wishes and they are able to make their own decisions, they do not have fear, they can override it can’t they?

Blaise: Yes, you do not need the document because they are there and they can tell you what they want directly.

Joel: That is right. And a person responsible for a patient or the enduring guardian or the guardian, they cannot override a valid advanced care directive.

Blaise: No, no.

Joel: Yes, yes. So hopefully that clarifies a lot of things. I guess sometimes there can be situations where the advanced care directive may be written for a situation which is slightly different to the current situation isn’t it, but that is a different story, isn’t it?

Blaise: Yes, if there is doubt for some reason about the validity of an advanced care directive or how it is to be applied, then you might end up getting consent or discussing with the person responsible, but that is not because they are overriding the direction, that is because the direction is not valid.

Joel: Yes, sure. That is good to know. So, scenario. We have got a new scenario for you. So hopefully everyone can see this picture. Not everyone? Everyone can? We will just wait for the graphics to catch up with a few people. So, a man with diabetes. So that could be a lot of people. He is admitted into a hospital and you see this tattoo. It says DNR. So, Blaise is this a legally valid advanced care directive?

Blaise: This is a really good example, and I think what we need to do is look at this in relation to the criteria for validity that we will get to in the next slide, but if I saw this in Emergency, then I would be, I do not think I would be confident to follow it, no.

Joel: Yes. So, in fact it seems like this patient according to the newspaper that we got this from, this is a patient that had got DNR tattooed on his chest after losing a bet, so it did not reflect his wishes.

Blaise: A very dangerous thing to tattoo if that is not what you want.

Joel: That is right, yes. So obviously, you know, I think it underlines the importance of not relying on a tattoo and the fact that sometimes it is difficult to work out if someone’s documents or their written down wishes are valid or not, isn’t it?

Blaise: Yes, absolutely. So if we go to the next slide, this is the criteria for validity which comes out of the case of Hunter New England and A, and those are the three main things that we look for in deciding whether an advanced care directive must be followed. Firstly, it has to be made, have been made by someone who was competent or had capacity, but we are entitled to assume that someone has capacity unless there is some reason to doubt that. The advanced care directive also has to be very clear and unambiguous, so if you are going to tattoo DNR you probably want to at least spell out the full words. And then the one that is often the most difficult to understand, it has to extend to the circumstances at hand. So, the best way I can explain that is with examples. So if you had a cancer patient, a terminal cancer patient who prepares an advanced care directive about how they want to be treated over the next six months as their disease progresses, including that they do not want CPR at a certain point, and then the next day they get hit by a car, and if they were given CPR they would be expected to recover from the car accident with virtually no issues, then in that scenario you might decide that because the advanced care directive was intended to apply in relation to the progression of the cancer, it was not intended to apply to the circumstances of the car accident, in which case it would not be valid for that situation. How do you know? We do not have many cases yet where hospital doctors have had to interpret advanced care directives, but we are expecting as the uptake improves, we are expecting to get quite a bit more which will give us more guidance. But, one of the ways that we can, if time permits, try and confirm the validity if there is doubt, is to call the GP. Particularly if the GP has been involved in preparing it. If there was a witness to the document and we can contact the witness, then that can be very helpful. If the person has discussed the advanced care directive with their person responsible or their enduring guardian, they can provide very useful information about the validity as well. And ultimately, if we cannot contact any of those people and there is still doubt, then we can go to court and we can ask for guidance from the court.

Joel: Sure. So there is, yes, that is good advice if we as GPs are, not many of us would be in a situation where we have to act on advanced care directives, but nursing home patients do come to mind, especially when we are thinking about transferring to hospital or sometimes even, you know, giving them antibiotics and things like that. So, it is just useful advice. I think the first point here which is that it is valid and legally binding if it has been made voluntarily – so voluntarily I think that is pretty clear, I mean if someone is trying to coerce someone into creating an advanced care directive against their wishes, so that maybe they have got ulterior motives, then that is easy for us to understand. So a capable adult with decision making capacity. That is sometimes I think GPs can become a little bit concerned by that especially if they are asked by the patient or the form to witness that they have decision making capacity. So, do you have any tips on what GPs could do to, or should GPs be concerned about signing those things?

Blaise: I do not think so. Capacity is usually in most cases, I do not think it is very difficult to determine if someone has capacity. You could ask them to repeat back to you know, just simple things like that to check that they have understood and ask other basic questions too to orientate et cetera. If there is doubt about whether a patient has capacity though, then they might need to go off to a specialist to have a formal test done.

Joel: Sure, sure. And I guess the situation where you might doubt, or there is a question mark, might be someone who has moderate dementia, someone who does not seem to understand what you are telling them, someone who, yes, those kind of things, isn’t it?

Blaise: But you also need to, there are also some things that will affect capacity like medication or fluctuating mental health and in those cases if you are working with a patient to try and help them with an advanced care directive, it might be worth trying to bring them back on another day, because not having capacity on one particular day might not mean they do not have capacity at all. They might on another day be better able to make the decision.

Joel: Yes. Excellent.

Blaise: Just, sorry, just had a question about what to do or it does not leave much time if you are in an emergency situation and you have got concerns about the advanced care directive and you need to know whether you can administer CPR or not. The court has said, in that situation, you can provide the treatment until the situation is clarified. So there is a presumption in favour of patient autonomy where they have clearly expressed their wishes, but if you do not have a clear expression of their wishes, then it is absolutely fine to treat them under the emergency provisions until that can be clarified.

Joel: Excellent. And somewhat related to that issue, is one of the participants asked the question about would it apply for patients who are socially isolated with none of the listed above. So, I guess someone who might not have any family, someone who basically has chosen to disassociate themselves with you know, other people. What would happen to them?

Blaise: In some cases if someone is needed to consent to treatment, then the public guardian can be appointed, or the public guardian will appoint somebody to fulfil that role.

Joel: Sure. And I guess in the emergency situation, doctors would have to use their judgement to basically?

Blaise: Yes, in an emergency obviously you do not need, unless you have a valid refusal, you do not need consent to treat.

Joel: Yes, sure. Okay. We have got a view frequently asked questions from patients. And I think we have covered some of these before, so we might skip over some of them. But, number one, what is the difference between advanced care directive and an advanced care plan? So, I think we have covered that before. Second one is, is an advanced care directive permission or consent for euthanasia? And the answer is, no.

Blaise: No. No. We have had some cases where people have attempted suicide with an advanced care directive in place saying that they do not want to be resuscitated after the event. But we have not had, an advanced care directive itself cannot be used to direct suicide. This is a really complicated situation though potentially, and so my usual advice to hospital doctors is if there is any doubt that somebody is trying to use an advanced care directive in this situation, to get legal advice.

Joel: Sure. And I guess, first aid treatment administered in good faith until, while seeking legal advice, that would be considered okay?

Blaise: Absolutely fine, yes.

Joel: Yes, yes, okay. Sure. Can I record my wishes regarding future healthcare in my will? So the answer to that is no, because the will is only read after your death, and probably sitting in your lawyers office. So, yes, so may not be too useful when you know, the doctor is trying to make decisions. I have advanced care directive but have decided that I would like my enduring guardian to make decisions they can at the time. Can I revoke my advanced care directive? So, the answer to that seems to be yes.

Blaise: Yes, I mean you can, people can change their mind any time. They can change their advanced care directive. They can revoke it. They can make a new one. The only difficulty with that is making sure that the people around you know that you have done it, and that you have destroyed other copies so that you do not end up confusing people.

Joel: Yes, definitely. You do not want different versions floating around. No, that would be bad. Yes. So, the question about preparing an advanced care directive interstate, I think we have addressed it before, and changing, the person changing their mind about advanced care directive I think we have covered just then.

Blaise: Yes. The recommendation there is that it is a good idea to review an advanced care directive every year to make sure that it still reflects your wishes, and that will also potentially give people that have to implement it that it still does reflect your wishes. But, in theory you could have a very old advanced care directive, years and years old and it could still potentially be valid. It is just that the chance, or the level of comfort people will have implementing it will obviously increase the more recent it is.

Joel: Yes, and I guess when there has been a significant change in someone’s condition, you might want to revisit advanced care planning and directive with them because they might have some different ideas about their wishes, don’t they?

Blaise: Absolutely. Their clinical condition changes or new treatments become available or they have children or any of those future big changes happen, then that is a really good trigger to have another look at it.

Joel: Excellent. So, this is an example of an advanced care directive form which is available in New South Wales. So this particular one, Blaise is the one created by the New South Wales Government Ministry of Health, isn’t it?

Blaise: Yes. And the reason we created this was because clinicians were asking for some guidance about what types of forms to use. There are a huge number of forms and templates floating around. Lots of organisations have their own forms. This is just one form that can be used. If you do not use this form, you can still, it does not mean your advanced care directive will not be valid, but if you create one that has some of the features in this, I would like to think that it would increase the chances that doctors will be able to follow it at the other end.

Joel: Yes, and this is the one that hopefully everyone across the healthcare system would be familiar with, isn’t it?

Blaise: Yes, and this will eventually be able to be uploaded into the eMAR, hospitals et cetera.

Joel: Yes, so it is a good place to start, this form. So, maybe we will just spend a little bit of time explaining the form in detail. Not in huge detail, but a little bit. So it has got places where the patient can put in the details, and if they have appointed an enduring guardian they can actually put their names down as well and their contact details. And there is also a section in the form where the patient can actually put down their values. So these are broad sort of values, these are not specific decisions about you know, lifesaving treatments, but these are what the goals of the patient are.

Blaise: These will be very helpful to guide the person responsible or the clinicians in treating the patient or making decisions for the patient.

Joel: Yes, so especially when the yes, the treatment decisions are not the standard ones, isn’t it? So, it is not CPR or the usual things like ICU& admission or you know, these sorts of personal values could be really useful. Yes.

So that is just another example of personal values, you know, which the person can complete in the advanced care directive form. And then, we have got a section where the patient can express their specific wishes. So, the example here is about CPR. So, that is quite useful. And then we have got other options including artificial ventilation, artificial feeding, renal dialysis and then there is a spot where patients can put down other things below that. And for patients who do not want specific treatments, as in under any circumstances they do not want certain medical treatments and certain religions come to mind, then there is actually a place where the patient can put that down in free hand. So it is very useful.

So, and finally there is a section on organ and tissue donation. So, Blaise did you have any comments about organ donation in this, is this something that is legally binding as well?

Blaise: It is something, well, it really, I would like to say that it was legally binding but decisions about organ donation may be overridden for compassionate reasons if the family is very distraught at the prospect. Although we find that where the family knows about the person’s wishes and their desire to be an organ donor, that hardly ever happens. And the rates of that are actually, the rates of the family refusing are reducing very pleasingly really.

Joel: Yes, yes. So, obviously, having this signed and documented is important but also communicating these with their family is also important isn’t it, otherwise you know, family might see it for the first time after the patient had died and felt a bit of shock.

So, obviously the patients who want to register their donation decisions can actually do it on a website, so Human Services website, and basically after the patient had died, and there are specific circumstance and situations in which organ donation can be considered, the doctors may ask the family about treatments which may be given before that person dies. So, it can get…

Blaise: Yes, and that is one advantage of filling out this section of the form, because there are treatments, for example administration of heparin that are good to give to an organ donor before they die in order to make the organs as viable as possible, but those treatments are not to further the health of the dying patient. So legally, consent for those is actually quite difficult and the cleanest and easiest way for us to be sure that we have consent to provide treatment to patients that is for the benefit of a future organ recipient, is for the patient themselves to consent specifically to that when they have capacity. So that is one reason why it is in this form.

Joel: Excellent, yes. Very good.

Blaise: The last part here is the authorisation, and here, this is really, none of this is legally necessary. You can have a valid advanced care directive without a witness. You can have a valid advanced care directive without even, in fact Mr A’s advanced care directive I do not think was even signed. But these again are things that will absolutely increase the chances of the person that is having to implement it being confident that it is valid and it does meet the criteria for validity. And the next section is asking if it is done with a health professional. It is asking that person to confirm that the person had capacity. Which again, makes sure, well will enable the people that implement it to be comfortable that there was no issue about capacity at the time.

Joel: Every bit helps, basically.

Blaise: Absolutely.

Joel: Yes. So, we have obviously we went home after today and tomorrow we became very excited about advanced care directive and we encouraged our patients to complete one. So, the question then becomes, where do we keep the completed advanced care directive? And I mean, I guess the advice regarding that is really to keep it somewhere that is easy for the patient or someone else to find. And in fact, patients are encouraged to keep a copy with them or a card in their wallet to let others know, that they have got an advanced care directive and the location, and also it is a good idea to give a copy to the person responsible or the family carer, the GP and the healthcare facility. And I think New South Wales Health just wanted us to, you know, let people know that it is not held centrally.

Blaise: No, we do not keep medical records centrally but the local health districts and the facilities do. So, particularly for patients with chronic illness that are undergoing dialysis for example, those facilities and those units will take the advanced care directives and store them there. And there will be flags on medical records hopefully to alert people that they are there.

Joel: Ye, definitely. So, and I guess the other thing is the My Health Record has a little place where you can keep a copy of advanced care directives, doesn’t it? Yes.

Blaise: Yes, but again at the moment that is still very new so in an emergency or a time pressure situation, I am not really sure what we are going to expect people, doctors in emergency to do you know, in relation to accessing patients personal health records.

Joel: Yes, sure. So it is best to keep it on them basically. Yes.

Blaise: This slide here which is taking a while to load is a list of some really good resources. The first one is a guide for advanced care planning for people with mental illness, and the main principal here is that just because you have a mental illness, does not mean you cannot participate in advanced care planning or even potentially make an advanced care directive. And this document goes through some of the specific issues for people with mental illness. The next one there, end of life decisions, the law and clinical practice, is a really, really good website that has been endorsed by the AMA and the nurses association and it has got some really good information in a pretty easy to follow Q&A format, about not just advanced care directives, but when you can refuse treatment, whether you have to provide futile treatment to patients just because they are asking for everything to be done and issues like that. And it has some really good case studies running through there as well. The capacity tool kit is an Attorney General’s Department of Justice document, and that has some good advice on how to assess capacity for different types of decisions, because capacity is going to be slightly different for different decisions. And then lastly, the guardianship division of NCAT has some useful fact sheets and information about making applications when you have got a person responsible that is not acting in the person’s best interests and you need to have potentially a public guardian appointed in their place, or there is some other dispute between persons responsible about appropriate care. It has also got some information about general information about who can consent to different types of treatment for someone who does not have capacity.

Joel: Excellent. And I assume all of these links will be sent to the participants as well, Sammi?

Sammi: Correct, yes.

Joel: Yes, excellent. So just, I think just looking at the questions which have come in, I think we have answered most of them.

Sammi: Yes and if there is any that we have missed, I will be posting an email address shortly where you can send them through to as well.

Blaise: I am happy to go through and answer any that have been missed.

Joel: Yes, excellent. Sure. So, in conclusion, advanced care directive is a key part of the advanced care planning process, and there is a difference between advanced care directive, advanced care planning and advanced care plan, and there are various tools and resources available to assist patients and health practitioners and also it is really important that GPs are involved in providing kindly support and awareness to patients and their family.

So, just revisiting the learning outcomes for today. So these were the learning outcomes which is to discuss the role of an advanced care directive and advanced care planning with patients, identifying when an advanced care directive will apply, listing resources that can assist in initiating end of life discussions, and assisting patients with preparing their advanced care directive. So, I think we have covered all of those areas. Yes, Blaise, did you have any last comments before we finish?

Blaise: Only to say that we would really, I mean I think advanced care directives are a really important part of end of life care, and we are really hoping that this is going to be, and this template form in particular, is going to be a practical way of helping, making them more accessible to people, and making sure that we do not have such a difficult time for patients and families at the end of life. Make the whole journey more smooth.

Joel: Excellent, yes.

Sammi: Wonderful. Thank you Joel and Blaise for joining us this evening, and thank you to everybody online as well. We hope as Joel said, that we have now covered those learning outcomes. Just a note that this is a CPD activity. You will need to complete the evaluation to receive your points. That is it. Thank you again, Joel and Blaise and everyone on line for joining us. Enjoy the rest of your evening.