Sammi: Good evening everybody and welcome to this evening’s Initiating End of Life Discussions in General Practice webinar. My name is Samantha and I am your host for this evening. Before we kick off, I just 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, I would like to introduce our presenters for this evening. We are joined by Associate Professor Joel Rhee and Ms Anne Meller. So Joel is an Associate Professor 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 Anne is a nurse consultant specialising in Advanced Care Planning at the Prince of Wales Hospital. So, thank you for joining us this evening, Joel and Anne and I will hand over to Joel now to take us through our learning outcomes for this evening.
Joel: Thanks, Sammi and yes it is really great to be back and being able to facilitate a webinar. I think I was here late last year and it is great to be with Anne as well. So welcome, Anne.
Anne: Thanks Joel. Hi everyone.
Joel: So just a few learning outcomes this evening. So by the end of this online QI and CPD activity, you should be able to recognise the difference between Advanced Care Planning and Advanced Care Directives. You should also be able to identify patients with whom it would be appropriate to initiate conversations regarding their end of life planning. And demonstrate a sensitive approach to breaching the topic of end of life discussion with patients.
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. And the process involves the patient thinking about their values, beliefs and wishes, and it is best if Advanced Care Planning happens earlier in life when a patient is still well. Creating an Advanced Care Directive can be part of Advanced Care Planning. So late last year, we actually spent a little bit of time thinking about Advanced Care Planning and I understand that the recording from that webinar session is available for interested people to have a look?
Sammi: It certainly is and when we send the post webinar email around before the end of this week, we will include the link to that recording as well so anybody that wants a bit more of an in-depth idea about end of life planning and the law, which is what the previous webinar was on, you will be able to watch that recording.
Joel: Yes. There is a useful website and I think there is a link at the bottom of the slide. You can go to that and it has got useful information I think for health professionals, but also patients as well. So that is something really worthwhile having a look at if you are not aware of that resource.
There is also another resource which is available on slightly different website and you can once again have a look at the link at the bottom of the slide. But basically I think initiating end of life discussion is, well we can obviously talk about that today, and sometimes I think it is quite common for health professionals and doctors to get worried about this. And a common questions is, well is it appropriate for me to tell my patient that they may die soon? And people get worried that it might lead to complaint, or it might lead to a dispute. And I think that is definitely something that does worry a lot of people. In your experience Anne, is that a common sort of worry?
Anne: No well Joel as you know we have been working on a project together where we asked patients in outpatient clinics, I guess with the blessing of their specialist, we approached them as having identified them through some of the tools that Joel will go through. And half the people that we approached, or close to half of them, were all very interested to hear more, to get more information about planning ahead, Advanced Care Planning, thinking about who they could appoint to make decisions and things. So I think it is something that is out there topically. The planning ahead tools site that you have there is the government portal for wills, power of attorney, enduring guardianship and also have some references to Advanced Care Planning as well. So that, you know, is a one stop shop to go to. But I think people are, once you ask them in a sensitive manner, you do not say I think you are going to die do you want to do this. I think there is another way to do that, but being cognisant of their problem and raising it just to see what their issues are, it is a good opportunity and people seem happy that it has been raised by health professionals.
Joel: Yes. So something that often patients and family are more than happy to talk about, but health professionals sometimes can be a little bit too worried sometimes.
Anne: Nervous, yes.
Joel: So what is an Advanced Care Directive? So, an Advanced Care Directive is something that allows a patient to identify what healthcare treatments they would like to have or refuse. It also allows a patient to record their specific wishes regarding future care. It is really important to realise that it can only be made by an adult with decision making capacity. So Anne, what about other people such as children or people without decision making capacity? How does it work there?
Anne: Oh well for children they still, they come under, I guess their parents give consent for them until they are 16 or 18. I think there is a grey area in the 18 to 18 year olds. So I would sort of refer to Advanced Care Directive for people aged 18 years and over, but I think there is a bit of a gap there in the 16 to 18 year old group. I think the younger, you know the more mature 14 to 16 year olds, could probably have some conversations, but I would be wary about doing Advanced Care Directives without a lot of medical and legal input into you know, understanding what their wishes and concerns are. But for a directive to be valid and legally binding, it needs to be done by someone with that decision making capacity. So the other option is people doing a plan which might just be them writing a letter about what is important to them and they just want to give some guidance. But it may not be something that might be acted on in I guess a legal sense. But to be valid and that legally binding term to be used, it has got to be made voluntarily by a capable adult. It needs to be clear and unambiguous. It needs to extend to the circumstances at hand. So the voluntary is good, but the capable is probably the thorny part that often comes up. We might talk a bit about that later.
Joel: Excellent. So a few questions are coming through already, but we will probably as we go through the webinar today, tonight, we will try to get to some of those questions and try to answer them.
So why is an Advanced Care Directive important? Making an Advanced Care Directive is an important part of Advanced Care Planning and also because none of really know what will happen in the future or can predict what might happen with our health. Some patients have firm ideas about how they want to live the rest of their life, including conditions and treatment, and I think in crisis, family may find it difficult to decide what treatment is best for the patient. So Anne did you have any thoughts about some of those points?
Anne: Well it seems that it is easy enough to ask people about organ and tissue donation and this often gets wrapped up together with that. Where people think about as sort of a gift to give to people. But I guess another gift to give them is you know, family members and friends is to say look I have given this some thought and so I do not want you to be in a difficult situation or in that stressful time if I cannot speak for myself and I am at an irreversible point in my life. So you know, we talk about organ and tissue donation and we also talk about younger people unfortunately having head-on car accidents and having awful, like this is a kitchen table conversation. My children, they are adults now, but they have been pretty sick of it for a long time. But I think it is something that you can just raise at family lunch or Sunday lunch with the family, to just say this is an important discussion for me to have, and try and just not shut it down when people want to raise it.
Joel: Excellent. So GPs or other healthcare professionals can really help patients prepare to make an Advanced Care Directive. So they could provide information to patients regarding patient health and aging. They could encourage patients to think about their values and wishes for treatment, suggest that patients talk to family and friends about this issue and identify their “person responsible” and provide websites with further information. So Anne, who is the person responsible?
Anne: I was wondering if you had covered that in the last seminar. So if someone cannot provide their own consent to treatment, there is a legislated hierarchy of people that the doctor getting consent, who requires consent for a treatment to go ahead, needs to approach. So the first person in that hierarchy is an appointment guardian. And so if you ask a room of people, how many of you have got an appointed guardian, most of them will say no. But enduring guardianship is an option there that people should consider. So if you have not got an appointed guardian, the next person that you should be looking for is a spouse, and that spouse includes same sex partners and de factos. Okay, so a lot of people do not have a guardian. They do not have a spouse. The next person on the hierarchy is a carer. So a carer is not a paid carer like a nurse in the nursing home or the community nurse or the home care worker, it might be a neighbour and it could be a family member who provides support on a regular basis. But they are not paid. They can receive a Centrelink allowance, a carer payment or carer allowance from Centrelink, but it is not a paid job for them to do. So if you have not got a guardian, you have not got a spouse, you have not got a carer, the next person in the hierarchy is any other relative or friend with a close and continuing relationship with the person. Now if you talk to a room full of people, that could be for many adults, it might be siblings if they are not married or they are not in partnership arrangements and things. Or they might have adopted children. Step children. We live in very diverse family arrangements these days. And maybe the person in that hierarchy might not be the person they want to actually be having discussions. So for each of your patients that you see in front of you, if you are starting to raise this, just think about that person responsible hierarchy because knowing who that person would be, say today, and say you know the patient in front of you is a lady and she has got a husband at home. Maybe her husband is very impaired or he has got dementia himself, so she is going to need to find somebody else and often people have got one or more children or close friends. And so it is good to engage them to say, who can speak for you on your behalf if you cannot do that for yourself? So just knowing about that, I think that helps you approach it when you are wanting to look at it for all the patients in your practice.
Joel: And obviously, GPs and other healthcare professionals also have another important role in helping patients don’t they? So they could also provide them with websites for further information. So, I think we covered a couple of websites previously. I think Anne you were also going to talk about…
Anne: I will talk about the New South Wales Health funds and I will probably mention a couple of others. But the planning ahead tools site. You just google planning ahead tools. That has, as I mentioned before the information on wills, power of attorney, enduring guardianship, and there is a little bit there on Advanced Care Directives. On that site there is actually a link which is legal resources for health professionals. And that is the health law reference that you had in a previous slide, Joel.
Anne: So in terms of making an Advanced Care Directive, so this is the Ministry of Health’s site. It is basically the internet site banner. You can click on public. There are boxes of information about children and family and more generic health information. In the more information area, there is an Advanced Care Planning link so you can click in there and that brings you up to six pages with lots of side bars in it that you might have seen in a previous slide also. So as Joel mentioned before, there is a brochure available in about eleven community languages. So that is just Advanced Care Planning – Making Your Wishes Known. And this booklet Making an Advanced Care Directive is, you can just google making an Advanced Care Directive if you want to go straight to that. Joel and I were involved, have been in an ongoing project looking at reviewing this document that was developed after a lot of review from the Ministry of Health. Lots of groups looked at different documents and it was not to prescribe one particular form that everybody has to use. Not at all. People can write whatever they want in whatever format they want. It just needs to meet those validity requirements about competency, capacity, you know that it is specific and that it needs to be valid. So this is a booklet that just has some information about Advanced Care Planning. It covers sort of broad things, it is in reasonable print font. There are plenty of pictures within it and then at the back of it is the form that people can complete that just talks about who their person responsible is, have they appointed an enduring guardian? What would be unacceptable for them in terms of an irreversible illness where they are not likely to recover. And then it goes on to ask about resuscitation and treatments and if they were dying where they would like that to be. Not everybody wants to die at home. Not everybody wants to die in hospital. So we reviewed this with input from clinicians, the patients and carers that were involved in our study. And so this is the revised document. It was updated in November last year. But if you have utilised it previously, we are more than happy to accept, you do not have to go back and re-do it again with patients just because this is the revised version. There has just been some typos corrected and a bit or wording rearranged. But it has been a good resource and it has been well received by patients and families.
You can also get hard copies from the Better Health Centre. I do not know, Sammi might be able to forward that, but the Better Health Centre we have got an email address or you can phone them on 9887 5450. That is a Sydney number if that helps.
Joel: Great. Excellent.
Anne: So, where is an Advanced Care Directive kept? Well, we would like to know that it is not in the top drawer or that it is with their will. Because oh yes, I have done that or I have done enduring guardianship and my solicitor has got it. We need it when the time arises. So where do we keep them? We suggest people give copies of their directive. You might find that if you do not ask, that patients have actually done this before and they thought oh, I did not talk to my doctor about it so you might wonder about what health information they have got or what it is based on, or it might just be on their values in terms of their beliefs and things. So we suggest that patients give their GPs, their person responsible, if they have got a guardian or a family member a copy. And if they come to hospital, to being a copy with them to hospital or to outpatients, those sorts of appointments when they come.
In our health district as part of the project we spoke about and we became aware of these documents, and if the patient agreed we scanned them and uploaded them into the medical record, and then we create an alert for that so that continues once they are discharged as well. And this process is being rolled out subject to some policy sign off that we are doing in our area, which is South East Sydney Local Health District and we have worked in partnership with Sydney Local Health District and Concord Hospital. It is also an accreditation item for the National Standards Safety and Quality of Healthcare. So it is going to be on every hospital’s agenda if it is not already, as looking at asking for patients for these, looking do they want to change them? Do they want to revoke or revise them? Giving them that opportunity and then following that through hopefully with their discharge summaries so that if there has been discussions around these things then the GPs are aware once they go home. So on a hospital inpatient flow chart, we use Powerchart. There is actually a tab that has Advanced Care documents there so staff can see the Advanced Care Directive and enduring guardianship documents. Were we know about them, we upload them and then are aware. So if we do not know, we do not know. So it helps if we know that they are available.
So this is still part of the Ministry of Health site. So this is the health professional information. Dignity, respect and choice: Advanced Care Planning for end of life for people with mental illness. That is the health professional’s guide. There is an introduction for patients themselves. It is not a consumer wellness guide or a mental health plan, but it goes into more detail regarding patients who are under the Mental Health Act or community treatment orders, who are involuntary. Just some of that crossover between the guardianship and Mental Health Act. But it does not have an actual form or anything on that. But it basically supports all those principles of encouraging people to provide, you know have a say in their treatment around, and it is probably more geared towards the end of their life for patients who have mental illness. Not to just write them off because they have a mental illness to try and include them in their support person where possible.
End of life decisions, the law and clinical practice. This was developed as part of the Ministry of Health’s five year action plan. Because clinicians worry about the law in end of life, like can you override a directive and what if the family is objecting and what if everyone is fighting? So legal academics from Sydney University and Queensland University of Technology, as well as senior clinicians and myself were involved. It can be accessed by the Planning Ahead tool site and there is a bar at the top that is information for health professionals. That brings you to the health law planning ahead tool. So they are sort of a little bit interchangeable but a little bit clunky. But just by googling health law, will just bring you to academic faculties. Queensland University of Technology also has a great porthole on end of life law and they have got clinician online training and workshops.
So anyway, back to New South Wales. The New South Wales Department of Justice Capacity Toolkit. This a really good resource but it was developed about 10 years ago and since then we have seen a push given the United Nations convention on the rights of people with disability. We are talking more about supported decision making rather than people are competent versus incompetent. It is not black and white. It is more on that spectrum and doing everything we can to support people in making their own decisions. And that might just be they are able to say who they want to make decisions for them, or to think about that stuff. So language is more around supported decision making. The Guardianship Act will be replaced by 2021 but it is still what we work with currently. And so the Guardianship Tribunal. Sorry, the capacity toolkit. You can order hard copies from the Department of Justice or you can just download the link and it takes you to that capacity toolkit. But it is a very good ready reckoner around all the different types of capacity required around wills, power of attorney, testamentary capacity and explains all that in sort of fairly easy language.
The Guardianship Division of NCAT, who used to be the Guardianship Tribunal, and it is now a much longer name. They have got really good fact sheets on the person responsible so that you gives you a bit of an outline of the rights and responsibilities of the person responsible and it also talks about the levels of treatment like urgent treatment, minor, major and special treatment, and they have also got good information on substitute consent. So that is just some good other links that are probably worth exploring should you see fit.
Joel: Thanks Anne, that is really useful and an excellent overview of the various resources available for GPs and health professionals. So we just going to move on to identification of patients. So I think a lot of us at this point will probably be convinced that Advanced Care Planning is important. The next question that forms in my mind at least is, well you know, which patients do we do it on? And in the previous slide I think we said that Advanced care Directives can be completed by any adult. But I think that sometimes it is worthwhile thinking about resource allocation perspective that we can see ourselves as precious, valuable resources and sometimes we want to you know, sort of cover patients who are probably, you know, cover patients where Advanced Care Planning would be much more relevant and important. And I think there are certain groups of patients where that is the case. So the first group of patients are older. Older patients. So for instance, people who are 75 years or older and people with life-limiting or progressive disease and the reason for those patients is that they are just more interested and end of life decision making is more relevant for them. And also they are more likely have end of life care needs. So that is really important. The second group of patients are people who are suffering from illnesses that are likely to lead to loss of decision making capacity. So dementia, neurodegenerative conditions et cetera. People who have uncommon treatment preferences. So an example we have here are people of certain faiths who are against the administration of blood products. And so other people may not have particular religious beliefs but they might have strong and uncommon treatment preferences. And finally people without any close relatives or friends who could make decisions for them. And I think Anne sort of mentioned sometimes you do have close relatives or close but sometimes you do want a specific person to make decisions for yourself. So I think it is a pretty broad sort of number of groups, but that sort of narrows down the field somewhat. But obviously any adult who is interested in having a discussion about these issues, it would be relevant for them. Yes.
So, there are several approaches to identifying patients who are more likely to have end of life care needs. And the first approach really is just using the clinician’s intuition and that is just your gut feeling. And that is when you sort of think about a patient and you just feel, well I think this patient might benefit from having discussion about end of life care needs. But that is often people with more experience. You know they rely on intuition and it works well for them. But people who are just sort of starting out might need a bit more guidance. And a useful tool that has been developed and it has sort of become quite common place even in Australia, it was developed in the UK, is the surprise question. And that surprise question is, would I be surprised if this patient died in the next six to twelve months? So you do not have to ask this question to anyone. You do not have to actually physically, you know literally, ask it to your patients. You just, it is something for the clinician to consider. And if the answer to this question is no, I would not be surprised then that actually means that that patient might have end of life care needs and might benefit from having these discussions.
There are even more structured tools, you know which go beyond the surprise question and we are going to have a look at a few of them. So one tool that has also been developed in the UK, in Scotland, is Supportive and Palliative Care Indicators Tool. It is called SPICT. It does not quite sound, I think the C and the I are switched over, but it makes, it is easier to pronounce this way. If you, you can actually go to the SPICT website and you can actually download free copies of it. There are several versions of it, but a commonly used version, I will just put it up on the slide. And it is really useful because it has got, it allows the doctor or the health professional to think about general indicators of poor or deteriorating health. So the use of things like hospital admissions, unplanned hospital admissions, just unexplained weight loss, et cetera et cetera. And then there are specific clinical indicators as well. So things like metastatic cancer, heart or vascular disease, kidney disease, liver disease, dementia, frailty et cetera. So it gets you to think about the disease, but also about the whole person. And that is quite a useful tool to supplement or compliment clinician’s intuition or the surprise question in identifying patients.
Something else that has been developed, this time in Australia, is something called CRiSTAL. I think CRiSTAL might actually, yes it makes sense. But it’s Criteria for Screening and Triaging to Appropriate Alternative Care. CRiSTAL tool was originally developed for the acute care setting in Australia. It is a fairly recent development, so you may not be, the listeners may not be necessarily aware of it. But because it was developed for an acute care setting, it looks at things like age, recent hospital admissions, past medical history, frailty, level of consciousness, vitals, urinary analysis, ECG results et cetera. So, whether you could apply this to a patient right in front of you who walked into the surgery and you are speaking to, you know, there can be challenges to that. But definitely for instance in nursing homes and other places there may be a role for it. So if you are interested in having a look at this tool, you could go to the link which is provided there and I think it is an open access publication so you can just have a quick look at that. But it is something that is recently developed in Australia but has not yet been widely used in general practice.
Something else that has been developed. This one is Canadian. We are sort of doing a whole quorum or rest of the world, the globe. So this one is called MONR. So people are coming up with different acronyms which are, yes. And this one is Hospital-patient One-year Mortality Risk Model. So you could, just from reading the title it sort of looks at, gives you, attempts to predict the mortality risk in 12 months. And it can be calculated using hospital admissions data. So it is quite attractive to hospital-based clinicians in particular because you do not even have to see the patient. You could basically just look at the routine data that is collected in the hospital admission and you could actually work out that person’s mortality risk. So you know, whether you can apply this in your general practise, I think you know, that is a question. But if you are interested in this then you could have a look at the link which is on the slide as well.
So how to identify patients in a busy clinical practice. So think we have talked a bit about three or four different approaches to identifying patients. But how to we actually use that in a busy clinical practice where you know every 15 minutes you have a new patient. And I think the key message here is that there is no right or wrong approach. We are not mandating, I do not think either Anne or myself would think that you have got to use a particular approach. It is what works for that practice and your patient group. And how I thought about this is really two ways. One way is opportunistic. So basically, when a person is in front of you and often you sort of finish your consultation and you might have a couple of minutes to spare and you are thinking of doing some preventative activities or other activities, then there might be an opportunity to quickly screen the patient using the surprise question or using SPICT. And if they, if you feel that they could benefit from having some discussion about end of life care needs and Advanced Care Planning then you could actually provide some information about that and get them to come back. So that is one approach. The second approach is really much more systematic and that is sort of incorporating it into existing systematic approach to assessing patients and a good example which you know, a lot of GPs do nowadays is 75 and over health assessments, or when you are actually reviewing a care plan. That is a good opportunity once a year to go through with patients you know, their healthcare needs and it might be a good time to provide some brief information about Advanced Care Planning and if they are interested they can come back for a longer discussion. So Anne, what do you think about these two approaches and yes?
Anne: I think similarly. When I talk with community teams and community service providers I sort of put it to them similarly, like we are just trying to update our records or do you do a mail out to everybody. I think we did similarly previously with practice nurses and one nurse said, I am just going to mail everybody who is 75 and over, and I think she got one grumpy letter back saying take me off your mailing list, how dare you? So that is sort of just one way. Do you do a blanket mail out or do you, I do not mean cherry pick, but some people you know them a lot better than they are coming to you for the first time. And that was what we found in the clinics as well. The doctors said this patient, they might be positive for say the SPICT or another tool, that we should have this conversation, but this is the first time they have ever been to see me. Or I have seen them several times and there is a whole lot of chaos going on in the family at home and now is not the right time. And we saw them six months later or they have come back to clinic. Yes, now is the right time. So timing is important and you can have that opportunity or as you say put it into your existing health assessments. Or if you want to be really lazy, or not really too engaged, you could just have brochures in the waiting room about making your wishes known. That is pretty passive, but it does indicate that you are happy for them to approach you about that. That is probably another option as well.
Joel: Yes. I mean Anne there was a recently published study wasn’t there in Australia where they found the prevalence of Advanced Care Directive documents in general practice was 3% wasn’t it. So I guess the fact of the matter is, not many patients have it. So even if we cherry pick, I mean no one has it then just doing it on any patient is going to help.
Anne: Increase your stats. That is a national prevalence study that hospitals, GPs and nursing homes have been involved in. It would be interesting to get this year’s data for that, so yes.
Joel: And I think we sort of talked a bit about opportunistic and incorporating into existing assessments and I think Anne sort of mentioning about a much more systematic approach where you might want to do a mail out and things like that. You could really get sophisticated, so I mean if you, mail out ease is all the rage isn’t it where you actually, a lot of primary health networks are doing it and a lot of other people are doing it, where they are interrogating the clinical database to identify patients. So you could actually do an interrogation and you can identify a certain group of patients and then you could basically either do a mail out or you could even decide to insert a reminder into their medical record to discuss when they might come in next and to discuss Advanced Care Planning. So that is another potential approach.
So, in terms of, we talked a little bit about how we identify patients. But let us say we identified someone, so in your mind you want to actually have a discussion. So Anne, what do we do?
Anne: Yes. So I think sort of, I get asked this question from senior nurses and clinicians who are all like GPs, you know really busy clinics and practices going I have not got time to into this in big detail. But I think the trigger question I would ask would be, who would you want to make decisions for you if you could not do that for yourself. If you have got in the back of your head, that person responsible hierarchy and you know that patient, you are going to say, well who you want is not going to be who you might get. Or if you want someone in particular, you might want to think about enduring guardianship. And we will send you the links for the enduring guardianship. And then, or you might just want to say, look I am just wanting to get my records straight here, have I got the right person about who I should be contacting if something happened to you? We find in hospital, the person that comes in is the person with the mobile phone and the car. They might not be the person you want making consent decisions for you if you cannot speak. Or even asking, have you appointed an enduring guardian. That leads into that. Have you done an Advanced Care Directive? Usually you get, “no, what is that?” and that leads you to say, “Well this is just some information. I raise this with all my patients.” You might also feedback from the patient saying “oh my sister is in a terrible situation. She cannot speak. I would hate that.” And it just gives you the opportunity to drill down a little bit more as to what it is about having a stroke that is so bad. Because you could have a little stroke or a Big Bertha stroke and 500 shades of grey in between.
Anne: So, are they fearful about mobility or swallowing or recognising their family or their speech? So, while not being nihilistic about it, try and talk them through what those things are.
So in identifying about who will speak for them, who that will be you are just trying to understand who that person responsible is. It is maybe it is going to be your wife, is that okay? And they might go, “no we lock horns on this issue all the time and we have got very different ideas,” although they might be very happy with their spouse or their adult child. We have got a question there. We have got a couple who are same sex partners who have been together for 20 years and the hospital disregarded that. Well, that is actually the person responsible for those same sex partners, for one of the GPs, so for same sex partners who are not married but together for 20 years. When one had breast cancer the hospital excluded the partner and later they got married so they can be next of kin for each other. So they were actually next of kin, they did not have to marry just for the purpose for the hospital. I hope the marriage was a happy one and a good one. Yes, but the hospital did the wrong thing in that regard. Yes, yes. This is something that hospitals, the Guardianship Act has been out since 1987 and health professionals are still trying to get their head around it. So just in terms – I do not want to run out of time or talk for too long, but I am just talking about who that substitute decision maker might be, and then just reflecting on recent health issues, have they been in hospital lately, or had an admission? How did that go? Sometimes it is awful but other times they go, “no that was all good and yes I would do all that again, it was worth the difficulties that I went through.” I think just phrasing these things, look we are living longer so we need to know a little bit more about this.
So yes, brochures and booklets and pamphlets are available so there are a lot of resources out there. Patients probably want your advice about their medical condition and possibly they need referral on to other specialists for other opinions as required. And they do not have to do an Advanced Care Directive, but it helps to know in the suite of things like to ACAT and services, that you know an Advanced Care Directive might assist them or might meet their needs.
I will just go on now to talking about capacity assessment. I try to avoid doing a capacity assessment. It is not really within, as a nurse, I am a senior nurse but it is not really in my scope of practice. But any time I am looking at any conversation, like I am having quite a nice conversation here with Joel and Sammi, but if Joel or Sammi started saying some unusual things I would have a bit of a trigger to go, hang on, something is not quite right here. So while we are having a conversation and we know this person, they can understand the facts and the choices involved, they can weigh up the consequences, they can communicate that decision, then they pretty much have capacity. The Ministry of Health document for nurses, that was an issue. They did not want to sign off capacity assessment. We left that for neurologists and geriatricians and GPs and people who know the patient. But if we are assisting a patient, we might think they have got capacity. The signature is on the back of that document. If we are witnessing it, we are saying I have got no reason to doubt the person’s capacity at the time it was signed. So you need to have fairly, capacity assessments probably now are you know a webinar in itself. You need to have a very valid trigger to go off and assess someone about their mental capacity. But education, you know looking at their environment, reversing reversible effects of medications, delirium, depression. Putting them in a good space and giving them the opportunity to have a say in their own welfare, that is the aim of sort of enhancing that. I have had patients say to me, “well what would you do?” and I think okay, we are not doing any more Advanced Care Directive here because… so these patients are often quite motivated and they want to fill things in and they want to write notes and they want to tell us what they think. That probably provides a nice segway. Some people do not want to do a directive, they just want to write a plan that is more about their values and what is important to them to give a bit of guidance.
Joel: And I think obviously, I think what most GPs including myself, we probably feel a bit uncomfortable about doing a formal assessment of capacity either, so I think once again as what you said Anne, if we have reason to doubt someone’s capacity, in that case we will raise a flag and probably refer at that stage. Yes, I think that is probably the sensible way to do things.
Anne: Yes. I mean there are tools to screen mental capacity, but it does not mean that they cannot, often people, their mini mental score might not be very high but they still know their values and their beliefs and their wishes and what is important to them in their life. So those sorts of scores, we do not go there. They give you an indication and a screen but it is not preferable.
Joel: Sure. So we have got a case study.
Anne: Yes. So Barry here, Barry has been known to me since about March 2016. He was referred by his community nurse who attended his wound care. His mother had died about six years ago and so he had clearly sort of outstayed his welcome in the family home. So part of the agreement in the mother’s will, the father had previously died, was that he could stay in the house for a year after she died, providing he was independent. That was the condition. So this is the parent’s home. He was the carer for the mother until she died and he has got six siblings and he has got a lot wrong with him. So yes, he has got vascular problems. He has had bypass surgery to his legs. He has persistent leg ulcers with multi resistant infections. He has had osteomyelitis, osteoarthritis, hypogonadism, hydrocephalus as an infant, diabetes, peripheral neuropathy and morbid obesity. So yes, there is a lot wrong with him. But he also had a lot right. You know, when I got this referral, I am like, oh gosh, where do we go here? When I visited him at home, he was a 120 kg and but he was 180 kg a couple of years prior, so when I first saw him in March 2016 he was 120. He had stopped drinking 11 years previously and stopped smoking two years prior to that. But he really missed that social contact at the club. He thought his community nurse who did his wound dressings three times a week was the best thing since sliced bread and they compared notes on travel. His recurrent infections had left him with MRSA. In October 2015 he was admitted with hypothermia. He has got supports at home. But he recognises the limitations of all his multiple diagnoses, and that they might have a domino effect at some point. So his supports at home are the community nurses. He has a suprapubic catheter, and the spinal nurses come and change that, or he gets the ambulance to come. He has personal care, Meals On Wheels, house work assistance and he mobilises with a roller frame indoors. So I got the referral from the nurse and when I rang him, he said “I want to do an Advanced Care Directive.” He was a bit anxious at first because I think my first reaction was, you are pretty young. He was only 62. I think he thought I was going to talk him out of it, so he was ready to put up a fight, because he was pretty determined to do it. He was convinced that he was not going to see another winter. His fibro house was pretty cold and when he was hospitalised, there was a lot of talk of nursing homes and amputations which he refused categorically. He wanted an Advanced Care Directive because he just did not want that leg amputated. He had a few stints in rehab. He did not like most of the doctors. They tended to be a bit obsessed with his gonads and his genitals. So instead of talking to his face, unfortunately on ward rounds they go and pull the sheets back. And he just found that quite demoralising and dehumanising. He was not a text book test, but he was pretty sick of hospitals.
The tasks from my perspective, process wise, so I tend to call it Advanced Care Planning 101: Person responsible, power of attorney. Let us just clunk through all those things. Have you got it? Do you want to do it? Let us get some help in that. But he wanted to stay in that house. So we worked through those things and he could do his plan or directive eventually and he seemed certainly capable and competent and very engaged. He was very clear. He was a good story teller and he narrated his own life. He was not expected to live past the age of six. He had had a shunt for hydrocephalus removed in his teens. He worked full time in the town hall until his 50s. He travelled but had never married.
So what are the risks here? During the day he could get sick and die. Am I implicit in this process of letting a vulnerable human being die? It is his right. He can refuse treatment sure, but what if he is depressed?
Joel: So we have got just a polling question. We are not going to do a formal poll here, but these are the options. So, listeners could actually have a think about these options. So the first option is advising the patient that he is not palliative and therefore Advanced Care Directive does not apply. The second is referring the patient to hospital to discuss Advanced Care Planning. The third one is providing a copy of Advanced Care Directive form for him to complete and sign. And finally, find out more about what he knows about Advanced Care Planning, why he wants to do it and his understanding of his condition. So these are the different options. So Anne is going to continue telling us what happened.
Anne: So, I guess I was a bit worried that this man might have been a bit depressed. So we have got a few rules that we developed some years back, about and flow charts sort of stemming from an overview. So depression along with infections and delirium is often reversible. So we want people to have the best say in their lives. You know, mood wise he seemed okay. He slept well. He did not have any suicidal ideation, no intention from what I could see or know. I spoke with his GP and his mood was generally okay. He had been on an antidepressant longer term, but his GP felt that there was not any need for any psych referral or medication. He was just being sensible, planning ahead. So my role was there was to just check what was reversible for him. And we look at sort of pain, and delirium, depression, what sorts of things are impacting on this person that are potentially reversible, relevant, irreversible conditions so that we want to put them in the best position so that they can have a say. So you know, process wise you might be doing a few things at the time, but I had no reason to doubt his capacity so I did not formally screen it. There was a little bit of light and noise impairment. Those things happen. But I wondered about undue influence as well, and maybe it was the hospital treating him that he felt sort of forced, that no one, you know people were only interested in you know, his genitals rather than him as a person. You feel so disempowered. And maybe all he really needed was a heater and some extra blankets for winter, and along with his community nurse we got that organised.
So does he know the risks and benefits of treatment? Can he weigh them up? Can he make a choice? At this point I did not know if had thought much about the alternatives, as in prosthesis and what it would mean. If he was adamant that he did not want to think about it, then I could not force him, but just because someone decides to do something that I think is a bit unwise or impulsive or irrational, does not mean it is wrong or it is impaired or incapable. So I bit the bullet and asked, what about a prosthesis, what would that mean for you, Barry? And I was a little bit taken aback by his reply. No one has ever spoken to me about a prosthesis, he said, what it involves or what it would mean. I was just gobsmacked that he had never sort of gone there, maybe he had been so adamant that he did not want to do that, that he had not got to talk it through. So I just said, “Look would you like some information on that?” so he could make an informed decision and get the facts involved. As I said, he did not like doctors very much but he did like one of the rehab specialists so we linked to outpatients and I met him at reception. He said I could come in too and apparently the appointment was all my idea and he was going in for my benefit, so he certainly had a sense of humour. And we explained to the specialist the background and he agreed it was a complex situation. The amputation would need to be higher, not below knee, meaning he would not be able to transfer without assistance, and you know was this assistance such a big deal? He already had help at home. No, but his siblings would be pressuring him to move and that would be the final straw. So, I will just go on.
He started writing down his thoughts. And so on the back of an envelope, they say you can write an Advanced Care Directive on the back of an envelope. So this was his attempt. He had a couple of envelopes. Sometimes his writing, it is hard to see there, but it is easy to read if you have the actual bit of paper in front of you. So he would work through. He had gone through the Enduring Guardianship booklet and written questions. He had notes. He was very motivated. So Barry wrote on the front and back. But he let me clarify and re-write his thoughts in a Word document and we went along. We started writing a plan. It was more a narrative. We went back and forth. A solicitor read it. The solicitor visited him at home. He had done an enduring guardianship appointment to appoint his sister and he put those thoughts and wishes into directions with an enduring guardianship appointment. Which means the guardian is bound by it.
So these are some of the… do we have a polling question now?
Joel: We might skip the polling.
Anne: We will skip the polling. We are probably running out of time.
Joel: We are running out of time.
Anne: I am talking too much.
Joel: Oh, no, no. It is good.
Anne: And besides these are sort of ideas. This was not Barry’s but you get the idea. We all see these types. The one on the left was attached to a walking frame. Death is quite okay. No CPR. PTO. And people often mention a retired nurse who had her chest tattooed. Anyway, I digress.
After all that he did an Advanced Care Directive. He did not want to just do the enduring guardianship appointment. We emailed several versions to the specialists and GPs so that the wording was really clear and OT saw him at home. He has got an electric wheelchair which he now has and he goes out. He goes to the club and he does not drink or smoke there. He has had a social worker discuss final housing options with him. He is a bit resigned to moving but he is making his siblings squirm and making them do a bit more work around it as well. He rings me every few months to see how I am going because I think he tends to befriend healthcare staff. I think things are looking a lot better for him than they did back in 2016. He just wants to live on his own terms and I feel like Advanced Care Planning is actually a health promotion or insurance exercise. While you are planning for the worst, you hope for the best. And once it is done, you get to refocus on the good things in life. So that is Barry.
Joel: Yes, thank you Anne. I mean it sounds like it is something that sort of is a real process, isn’t it. So it is not just about you know, someone just filling out an Advanced Care Directive form, but it sort of ended up involving so much giving information to Barry and getting new perspectives and new opinions. Getting Barry to think about his health and what he wants to do. And he is still obviously –
Anne: Travelling along.
Joel: Travelling along, yes. So that is I think a really good example of Advanced Care Planning. And just because we are a little bit short on time, we will just move to a certain slide.
Yes. So, we talked a bit about some tools you could actually use to help you end of life discussion and you could use the link on the slide to download the brochures and template. There is a conversation guide as well. So this one by Dying to Talk is actually geared towards family and patients to have a bit of a discussion. But just something that would be worthwhile noting is that that particular one is heavily focussed on death. So it is not, I do not know whether that may be something that some of your patients might want to talk about or you know, but there is another package that has been developed by TheAdvanceProject.com.au. So that is something that I have been involved in. It actually is a really nice project that is funded by the Australian Government. It provides online training for nurses, GPs and practice managers. It is designed to be applied to the whole practice, and it actually includes a lot of tools and resources including a discussion starter which does not actually mention death and things like that. It is still very relevant for end of life care and it does not shy away from that, but it does not start off by talking about death right from the beginning. So that is something else which might be useful.
So in conclusion, Advanced Care Directive is a key part of the Advanced Care Planning process, but it is not the same thing, isn’t it? So, Anne what is the difference between Advanced Care Directive and Advanced Care Planning?
Anne: Well the planning as you say is the process. Not everyone is going to do a Directive. Some will just say, have a conversation with those close to them. Some will appoint someone to be their decision maker, their enduring guardian in New South Wales. Power of attorney is finances only so do not get me started on that too late. But a Directive and a plan. A plan will give you guidance but a Directive has to meet those validity requirements before it can be acted upon. And we would assess how applicable it is when people are in hospital or at the time decisions need to be made.
Joel: Excellent. Sure. And we have also talked about various tools and resources to assist patients and health practitioners, and also we have talked about how it is important for GPs to be involved in providing kindly support and awareness to patients and their family.
So learning outcomes. I think we just revisit. So by the end of this online activity, you should be able to:
One, recognise the difference between Advanced Care Planning and Advanced Care Directives.
Secondly identify patients with whom it would be appropriate to initiate conversations regarding end of life planning.
And finally, demonstrate a sensitive approach to breaching the topic of end of life discussions with patients. So hopefully we have covered all of those three areas.
Sammi: So that does bring us to the end of our webinar this evening. So we would just like to say a big thank you to Joel and Anne for joining us here and also to everyone on line who has taken time out of their evening to come and listen in tonight. We do hope you have enjoyed the session.