Age Matters Episode 4. Future Care Planning

Age Matters Episode 4: Future Care Planning 

Thank you to Professor Mark Taubert, Consultant in Palliative Medicine and Chair of Future Care Planning Strategy Group, NHS Wales 

Future Care Planning - NHS Wales Performance and Improvement 

Future Care Planning - Older People’s Commissioner for Wales 

Welcome to the Advance Care Plan resource for England & Wales - Advance Care Plan 

Age Matters Pennod 4: Cynllunio Gofal y Dyfodol 

Diolch i'r Athro Mark Taubert, Meddygaeth Liniarol Ymgynghorol a Chadeirydd Grŵp Strategaeth Cynllunio Gofal y Dyfodol, GIG Cymru 

Gofal Ymlaen Llaw ac at y Dyfodol - Perfformiad a Gwelliant GIG Cymru 

Cynllunio Gofal y Dyfodol - Comisiynydd Pobl Hŷn Cymru 

Croeso i’r adnodd Cynllun Gofal o Flaen Llaw ar gyfer Cymru a Lloegr - Advance Care Plan 

Transcript

SPEAKER_00 0:11

Welcome to Age Matters, the podcast from Age Cumry that shines a light on growing older in Wales. We believe that older people deserve to be heard, respected and represented. This podcast is our way of making sure that happens by giving a platform to the voices and stories that often go unheard. In each episode, we'll explore the issues that matter most to older people in Wales. From care and community to rights, resilience, and everything in between. We'll also look beyond our borders to connect with wider conversations about ageing, inclusion and change. Whether you're aging yourself, supporting someone who is, or simply curious about what it means to grow older in today's world, age matters is for you. The future is aging. Let's get talking.

SPEAKER_01 1:11

Hello and welcome to the fourth episode of the Age Matters podcast. My name is Sam Young. I'm the policy manager at Age Cymry, the National Charity for Older People in Wales. Today we're discussing future care planning. Now, if you're an older adult or indeed an adult of any age, future care planning or a future care plan is one of the most important things you can do for yourself and for your family, friends, carers, and those around you. And yet, most people don't yet have a future care plan in place, including myself. So to tell us more about future care planning and why it's so important, we've got along Professor Mark Talbot, the consultant in palliative medicine at Bolingia University NHS Trust and chair of the NHS Wales Future Care Planning Strategy Group. Mark, welcome.

SPEAKER_02 1:55

Hello, Sam. Thank you for uh having me on the podcast. Uh it's a great honor.

SPEAKER_01 2:00

No problem at all. Thanks for joining us. I thought I'd start with a very open question then for our listeners, which is quite simply, what is a future care plan?

SPEAKER_02 2:10

That's a very good question. And I think um I mean I'll be giving a definition of future care planning, but it's a bit of an umbrella term. So it's it's not something that you can easily explain quickly in one sentence. I'll still have a stab at it, I'll still try. And so a future care plan is where you make it very clear in uh any format, writing, video, or whatever, uh with regard to what your wishes might be if you get more unwell, especially on the background of a progressive illness. So that things are there in writing so that people know healthcare professionals, social care professionals, your family, your friends, and others can see, ah, that is what he would want. And I'm going to convey that information to anyone who comes to the house or to anyone who we might see in the hospital.

SPEAKER_01 3:05

Okay. And in terms of the format then, so you've mentioned several ways it could sort of several forms it could take. Um, I wonder if you could just give a bit more information on that. So, what what what does a future care plan, what can it look like as such? What can it look like? Yeah.

SPEAKER_02 3:19

And and and therein lies the problem because there's quite a few things to mention here. And it it's and there's as many things to mention here and as many forms to mention here as people's preferences and likes might be. So I have some patients who actually prefer to have everything set out very, very clearly, including refusals of certain treatment and maybe they're okay with other treatments. And other people try and keep it more general and generic, but would still like to convey their view on certain interventions and healthcare professionals and uh in in writing as such. But it can also involve uh other things, including your preferred place of care, your preferred place of carer, so who you would like to look after you, the settings that you'd prefer to be in under which circumstances, for instance. So there's different forms that cater for different needs in a sense. And uh there are so many that I found this very confusing initially. Um, and over the years I've sort of uh narrowed it down to several forms, which we can talk about during the program, such as there is a legally binding advanced decision to refuse treatment form, for instance. There is a more generic advanced statement form, so an advanced statement just to speak more generally about the sorts of things you would want or not want. Um, and there's other ways in which you can convey your wishes when you're less well. Because let's face it, when we're feeling less well, when we've got a progressive illness and we've developed a pneumonia, for instance, or a urinary tract infection, we've got a fever, we're feeling awful, we're feeling shivery, an out-of-hours GP who doesn't know us comes to the house, then actually having resources in place that back you up and back your wishes up is really, really important, especially when you don't feel uh able to communicate them as well as you would when you're feeling better. So that's kind of a a key point really. And good future care planning doesn't involve just that, it also involves, for instance, if you're very organized, appointing a lasting power of attorney, a person, a spokesperson for yourself for health and welfare matters, for instance. So someone who who is there who if you were to lose the ability to communicate your views on a specific topic in healthcare, such as you know, whether an intervention should be scheduled or planned, if you're unable to understand the risks or uh um the benefits of that one, you have nominated that individual or those individuals to help you decide on on your behalf and actually convey to the individual that you might be speaking to, doctor, nurse, or someone else, this is what they likely would have wanted. So as you can see, uh there's lots of different um things to consider here, which I hope we'll be able to go through. And I can actually give you a summary definition if you want of future care planning.

SPEAKER_01 6:37

Uh please do.

SPEAKER_02 6:38

So our summary definition of future care planning. Um I'll read it out to you. So it's slightly longer, but I think I hope it makes sense and we spent a lot of time thinking about it. So future care planning is an opportunity for an individual to work with health and social care professionals to consider what matters to them in terms of their well-being and explore their wishes for any future care or support that the person may need in the context of their condition, circumstances, and options. Future care planning is relevant to every stage of life, including for those who may have diminished capacity at the time of information gathering, and for whom a best interests approach should be followed. The discussions and decisions are recorded and should be shared with caregivers, families and professionals involved in their care. The output from future care planning conversations may include a plan or other document reflecting the person's preferences about the nature, type and location of such services and may include discussions in relation to a person's medical treatment and views on how their end-of-life care might look. Such output does not contain legally binding decisions, but rather helps guide decisions about treatments and care in the context of realistic appraisal of what is possible in the relevant circumstances. It can contribute to achieving a no decision about me without me approach in all eventualities, including when circumstances change, or when the person or those close to them express the need for a review. So that's the uh that's that's kind of the definition. And I can can tell you a little bit later as well of how we got there and how we how we looked into that and uh what documents we look at looked at as well, and what research we we used to come up with a definition as as well.

SPEAKER_01 8:32

Brilliant. Well, thank you very much. It it sort of sums up very nicely. Um and we've already touched a bit on this. We've touched already, I suppose, on how important it is for the individual who is experiencing those health conditions, the person going into care, the person reaching the end of their life. I suppose it'd be interested to know as well why it's important for other people. So for the people immediately around them, be them family, friends, carers, um health care professionals as well, the sort of everybody who is surrounding this individual as they as they move towards the end of their life.

SPEAKER_02 9:06

Yes, that's right. I mean, it can be a very frightening time for the people who are around the individual. I I sometimes c call them those close to the individual because that doesn't always have to be family or someone who's directly related. It can be a good friend, for instance. When something goes wrong and a person has had a terrible fall down the stairs, uh, for instance, and the other individual is calling an ambulance, then actually knowing what the future care plan might look like, having seen it, having read it, having access to it, being able to show it to the paramedics to say, yes, this is something we would want, but this is something we wouldn't want, or we wouldn't want to go here or there. Um it creates a conversation then and and and and is very important for you know staff arriving in an emergency situation, uh, for instance. Um having that very clearly set out is is quite important, and when that goes well, it it it tends to give a much much higher chance for the individual's wishes, prior wishes, to actually be respected. Uh and I would argue that kind of makes for a higher likelihood of a death or an end-of-life care that is more consistent with what the patient really wanted. But there's quite a journey to get there, and that often involves conversations with the patient and then also conversations with a person who's close to that individual. And I think that's certainly what specialist and generalist palliative care practitioners really try and do.

SPEAKER_01 10:53

I suppose I say it's very important, not just for the for the individual, but all these people who who care about them and who are around them. But the fact is that an awful lot of people don't have a future care plan in place, a lot of people hadn't heard of it. Um so I suppose I'd be interested to know how what the barriers are and what stops people getting future care plans when it seems like such a logical thing to do. Um what what is it that is stopping it from becoming more common among just the sort of general population? Yeah, I mean you you're right.

SPEAKER_02 11:25

Uh I and I think um it's a complex area, it's a sensitive to area, it's a it's an area, deaf and dying, that is often uh shouted down at the Sunday lunch table, you know. You know, it's it's sort of oh, don't talk like that. It's not happening yet, uh kind of conversation. Um maybe summarizes our approach towards this topic, uh Sam. I think, you know, I think if if if you started talking to your family uh about your will, for instance, um you might get a few raised eyebrows. And why is he talking about that? You know, if if if you even have a will, because lots of people don't. And I think I think that's quite a good cross segment there from future care planning to wills, because of course we s support people and suggest to people that they ought to have the house in order and a will is a good starting point. I don't know how many people at last count had a will, but I think it's many years ago I heard the number 11% bandid around. I mean, that doesn't sound like very much to me. So maybe it's maybe it's actually better than that, but uh that was a statistic, I think. I think that just summarizes our approach to the topic um overall. Interestingly though, when you kind of feel you have a bit of an artistic license, uh in my job certainly, to to bring up the topic, and when you do, uh people have a lot to say about it. They might initially kind of say, Oh, is he talking about that now? I'm feeling quite well, actually, thank you very much. And he's talking about what I would want when I'm less well. That doesn't quite make a lot of sense to me. But then I kind of say, Well, isn't it much better now when your brain is super clear to actually talk about these things, just get a bit of an idea of your views and opinions about certain things, maybe write them down, and then your future self might thank you when you're feeling too exhausted, too tired, too confused, too delirious to actually discuss that with the paramedic or the out-of-hours GP. Put it down, you know, in in whatever format, usually written format, but some of my patients are actually doing videos, you know. So uh that's all sort of part of the big umbrella of future care planning, I think. So yeah, you're you're right. It's a it's a sensitive topic, but uh I think the more you work in our line of of work, I think the more you kind of maybe become quite hopefully adept, natural at talking about it. I think I sometimes still maybe have some consultations where maybe I've rubbed people up the wrong way, or I've had a perfectly good conversation with an elderly person in my clinic. They then go back and speak to their son, who's maybe in London or something like that, say, Oh, I had a lovely conversation with with Mark about um uh that I probably wouldn't want certain things, including that CPR business. I don't think that would work for me. And the son in London on the phone just explodes and then directly phones my hospital and says, Why did you talk to my mother about do not attempt cardiopulmonal resuscitation decisions? I can't believe you did that. And then we have a conversation about that, and most of the time they then say sort of say, Well, I completely understand it. It's probably the way my mum actually transmitted it to me. Uh, that that was the issue. But it's a it's a sensitive topic, it's a topic that doesn't necessarily always get the justice it deserves in the media and the press. And um everyone has a diff everyone has a different view on it and a different approach to it. And say to my patients sometimes, you know, don't take this the wrong way. I just talk to everyone about this.

SPEAKER_01 15:04

So in a sense, it's a matter of people's uh views and a sort of emotional response to it, a sort of cultural thing, I suppose, rather than an institutional thing. It's very in a sense, it's very easy to put one together and it it doesn't cost anything, and you can do it at any age. It's more uh that the main barrier really is having the conversation in the first place.

SPEAKER_02 15:26

It is, yeah. I mean, I I must say sometimes the administrative part is also quite uh uh something, you know. I I've got an advanced decision to refuse treatment, and I'm happy to talk about through the different types of documents. So my advanced decision to refuse treatment, you know, I I think there's something in there about if I'm 14 days plus on ITU and non-responsive, switch everything off. Um don't quote me on that. I think I've used better wording. Don't worry. Uh but actually getting that uh written down and getting the right boxes ticked and getting that countersigned, you know, that also takes a bit of time, you know, and and doing doing that properly, and then having in the right place and then conveying to my wife and family where exactly and in which folder it is, you know, that kind of thing. Uh lasting power of attorney for health and welfare. I know that you have a lot of resources with age cumri in terms of how to do these sort of things for as little money as possible, but you know, it's it's it is quite administrative, and you have to fill in several pages and get signatures and witnessed signatures and things like that. And then you have to log it with the office of the you know public guardian as well, which comes with an administrative fee. Um yeah, again, and and like a will as well, you know, that has to also be logistically planned. So the administrative part I think is also something that puts people off uh sometimes. Certainly uh made me delay it quite a bit. But once you've once you've done it, I mean it's a huge relief as well, because you kind of think, well, that's a lot less uh stress and hassle if I do fall off my bike, you know, and something terrible happens and I'm I'm not able to respond anymore. It just makes life easier for those I love and those I care for. So it is it is quite a good feeling when you've actually done them.

SPEAKER_01 17:26

Yeah. I but I I and I I suppose as we're moving on to the next question, really I was going to ask, is to do with in encouraging people and how we can encourage people. I know you've outlined um a method there is simply by telling people how much easier it will make their their lives and the lives of those they love in in when the worst case happens. Um but are there any other ways we can encourage people to go out and get future care plan in place?

SPEAKER_02 17:53

I mean, this podcast, you know, hopefully is one way of encouraging them. Um hopefully people, even if one person listens to this podcast and then clicks on the resources and says, Okay, of the different future care planning resources, I'm gonna pick this one. You know, start small if you want to. I'm gonna um have a have a go at that. I'm gonna have a look at it. If there's any bits that I'm not so sure about, maybe I'll speak to my palliative care community nurse or my GP or my palliative care consultant or my oncologist, for instance, and and and go through it with them. I'll print it out and I'll show it to them and I'll say what do you think. Um and and then hopefully they'll have a receptive person. I mean, sadly, I've spoken to uh a friend of mine recently who actually printed out an advanced decision to refuse treatment and the the the GP she visited really I think was a locum GP and hadn't really seen those before and uh and got very spooked and didn't want to have anything to do with it. So I sadly sometimes you have to also find the right um care professional to help you with that. But um I would hope that people would take a look at this. A lot of people are quite organized. I think people who'd naturally listen to this podcast would probably be also the sort of people who you know might be quite organized in their in their life more generally and would want their maybe their their affairs put put in order. And then they might sort of say, okay, Marx talked about different forms of future care planning. I'll look at the different formats that are available. Is an advanced statement for me? Or is an advanced decision to refuse treatment something that's better for me? You know, you can have a choice, you can do them all together, or you can have have different ones basically. And we actually did a scoping review of the literature before we embarked on on some of this, and we looked at future care planning because uh Wales are future care planning and it's uh adopted as part of Welsh government policy as well, uh, within their six goals of emergency care as well. And Scotland have it as well. So Scotland moved from anticipatory care planning to future care planning, and Wales moved from advanced care planning to to future care planning as an umbrella term and as part of our policy direction. But what we found when we did the the literature review um together with the research team, a research team here with Mary Curie and Cardiff University, was that there was uh there are lots of different constituent parts basically, which we sort of have filtered down. So we found uh just under 200 studies basically looking at future care planning, and and we sort of filtered down what was relevant to uh England and Wales audience, so in particular Wales. Um and there we sort of found you know advanced statements are probably the most the closest thing to what people more generally uh understand as an advanced care plan. But yeah, an advanced statement is sort of non-legally binding um document that puts forward your your wishes, is is you know is not particularly prescriptive, but you can really put your ideas and wishes in it and you can fill it in if you want with a healthcare professional who can explain some of these things. And we've got something called an sort of ACPA here in Wales, which is in the resources that you'll get with this podcast. So on Wales.nhs.uk forward slash AFCP, um you have uh an example of an advanced statement. Have a little look at that. It's a few pages long, you can fill that in. And you know, I I think on page four or so you have a whole host of potential treatments that you might sort of say uh would want, would absolutely not want, or I'm not sure about that one, let you know the healthcare professional decide if I didn't have um you know capacity at the time to to make that decision. And you can go sort of through that, but it's it's it's not Of particularly legally binding to the reader. But you might also say, you know, within that review, we found that advanced decisions to refuse treatment featured a lot. So that's slightly different. That's that's something that is sort of enshrined within the Mental Capacity Act for England and Wales and is mentioned there as well as a sort of legally binding uh document where refusals that you put in there need to be respected. So if you if you have an advanced decision to refuse treatment and you say in there, if if if someone came along and I I was in a nursing home and I was non-resnonsive, for instance, and um and someone came along and said we have to put a feeding tube in that person's stomach, then my ADRT covers that I do not want anyone you know piercing through my abdomen and putting a feeding tube in, or uh putting a nasogastric tube into my nose and into my stomach. I wouldn't want that. Some people have very strong feelings about that, and they would put that into their ADRT and state within it, even if my life uh were in danger from not having that recommended procedure, I would not want it. Yeah? Okay, so that's uh that's one of them. Uh another form or policy or uh discussion that comes under future care planning is do not attempt cardiopulmonary resuscitation discussions and forms. So DNA CPR forms, or some people just call them DNR forms. I actually prefer the whole word DNA CPR, do not attempt cardiopulmonary resuscitation, which is just about one procedure, which is CPR, which is highly unsuccessful in people with severe progressive illnesses or palliative illnesses. Um and if successful, often leaves you with significant brain damage, organ damage, and uh can be very, very difficult uh pain-wise, and and in terms of recovery as well. And often people don't survive for particularly long. So that's why it's one of those things that we doctors and nurses and healthcare professionals do like to discuss with people in terms of their views on that particular topic. And we have a policy here in Wales, an all-Wales DNA CPR policy, which makes it very, very clear that that having such a form in place relates only to CPR in the context of an advanced illness, such as lung cancer with widespread metastatic spread, and it doesn't refer to any other treatment at all. So I have plenty of patients who have a DNA CPR form with them at all times and on their notes, but they were having you know experimental chemotherapy, immunotherapy, they're on trials, they're having all sorts of other treatments. But that procedure, if they if they fell over and their heart and their breathing stopped, uh, and if someone tried to sort of pedal them back into life again against the odds, they would not want that. So that's something that we've got lots of resources for because that's a very, very sensitive topic, and lots of people really find that very hard to discuss and and even bring up as well. I I must say, every single time, and I have the conversation several times per month uh quite often, um I I feel my blood pressure rising a little bit, and I feel it's a you know it's a it's a topic that can sometimes cause offense to patients as well, but it still is something that we need to under the umbrella of future care planning discuss, uh, and it's very important. Um then another uh form or um something that is of interest for people who have maybe diminished capacity or who've who've lost capacity is a record of best interests decision form, so an RBID form, which we've made um available in our uh future care planning resources. And and what is that? It's it's really let's say you've got someone and best interests decision making according to the Mental Capacity Act is really eliciting and finding out as much as you can as a healthcare professional what that individual might have wanted or how they might have solved the problem. So let's say you're you you're kind of trying to do that in a in a nursing home setting, and you've got someone in a in a care home who's got you know you know advanced, say uh an advanced breast cancer that is spread throughout the body with lots of lung metastases, they've got a degree of of dementia as well, and uh you've done a mental capacity assessment with regard to escalation of treatments or future treatments, and they've not been able to engage with that fully. And then you might say, well, okay, I I really need to speak to the the family now. I need to speak to those who are close to the patient, or uh an independent independent mental capacity um advisory person who can act as their proxy. And I want to sort of really elicit as much as I possibly can what this individual would have wanted, how they might have, for instance, uh approached the topic of having CPR. And it's interesting really because a lot of people have lots of people have quite strong views on things, but I think uh once you once you break it down, once you talk to the relatives or the family members or the um the the the proxy person, uh they often will sort of say, well, yeah, I mean, would consider antibiotics for sure, might even consider going to hospital if they fell over and dislocated their shoulder, for instance, or fell down the stairs and broke their wrists. Yeah, absolutely, would want to go in. But they might say, No, I think trying to get them back into life and then risking even further organ damage and further brain damage and actually likely not surviving that and the indignity of someone tearing open your shirt, removing your bra, putting electric pads on your chest, pushing down into the chest, dislocating the ribs, you know, having internal bleeding, you know, having further significant brain damage because the heart and breathing have stopped, uh would not want that, you know, and I think a lot of people when when faced with that and described in such graphic form as I have just now, would would not want that. So an Rbid can really help, an Rbid form can really help. And uh uh lots of colleagues in Wales use the all Wales RBI that we've made available on the site that I just mentioned, the Wales.nhs.uk forward slash AFCP site, to record such decisions and actually elicit from close family members and others what the individual might have thought and what their views might have been. And then it's there in writing and then it's very clear. And together with an RBIT form, for instance, after good discussions have happened, you could also place uh into the notes, for instance, a DNA CPR form, if that's all been discussed. We do have a duty to consult on these things either with the individual or if the individual is unable to with those who are close to the patient. So that those are all sort of really important aspects of it.

SPEAKER_01 29:12

Okay, brilliant.

SPEAKER_02 29:12

And then another another form within future care planning, but a sort of more temporary form, more sort of short-term form in hospitals and inpatient settings that can sort of for that episode of care. So let's say you're getting admitted for uh severe pneumonia, a treatment escalation plan can set the agenda for for that episode of care, for instance. And then that treatment escalation plan sort of expires when you leave the hospital or that care episode as well. So that's another thing that we've made available, and there's an all-wheles treatment escalation plan as well.

SPEAKER_01 29:48

Fantastic. Thank you for for going through the different uh aspects, I suppose, of future care plans. Um I know we've sort of touched on this already, particularly when we're talking about the the ABID form um around the the other people that support it, the support supporting family members, friends, carers of the person who is going through treatment. Um and I know ideally we'd like people to get future care plans when they are healthy, when they are have full mental capacity, when they're able to think clearly about it. But what if somebody, if if somebody is perhaps getting towards the end of their life, they maybe uh are not not sort of not able to really put one together without help from a carer, help from a family member, but they they they still want to have something in place. Is there any way that we can support carers, caring family members, friends, uh to help that individual get a future care plan in place?

SPEAKER_02 30:45

Absolutely. I mean, and and I hate nothing more than a situation where I'm discuss discussing future care planning with a patient who feels terribly weak and frail, has been through lots of treatment, is absolutely fatigued, and you're not entirely sure where their understanding lies. I always much prefer having a family member or several family members in the room at the same time. So we're all talking from the same page. And yes, that's not always possible because the patient has sometimes specified that they don't want the family involved and don't want to burden them or bother them or they don't get on with them. But I much, much prefer when they are there and when they are involved because then everyone has in the same is is talking is singing from the same hymn sheet or and talking from the same page, really, as well. So I think I think that's really important. Of course, what we do here uh in in the hospital and in the community settings as well is you can sometimes make assumptions that someone isn't understanding something or won't understand something. But I mean, I I was in Slandok hospital not too long ago with a a lady in her 90s and she was profoundly deaf. But once she had her hearing aid in, she could really absolutely understand everything. But I think you know, some carers have maybe gotten the impression that because she was deaf, she couldn't understand anything. Of course, that's nothing to do with capacity. She had full capacity once you put those hearing aids in. She was sharp as anything, you know, and she was was able to really engage in her care planning, and she wanted quite a lot done, you know, so great. So uh then we knew that. But number one is make sure the individual has all the opportunities to fully engage in those conversations, visually, uh auditory, you know, and uh and sometimes it's the time of day as well, you know, if if they've you know been through upteen th the upteenth procedure, just had radiotherapy, spoken to 16 people, and then you trot up at 6 p.m. in the evening, uh they won't have their dinner, and you say, Oh, can I have a conversation with you about um future care planning, they might not be at their best. Whereas if you you know get someone early in the morning when they've had a good night's sleep, that might be much better for them, you know. So it uh lots of things like that. But then I mean if you've really established that they're gonna really struggle to have that conversation and engage in that conversation, then having family members or proxy or people who are close to them or an MK in the room is really, really essential. And going through everything and discussing it, you know, is is is is really key. And then having actually an RBID form and record of best interest decision-making form uh there to guide you through the process. I mean it should be a good conversation, and then it should be a good documentation of that good conversation as well, in an ideal world, you know. We don't we think we know things aren't ideal uh these days, and we're giving corridor care at the moment uh in you know in NHS England and NHS Wales, and you know, it's waiting lists are huge and and and healthcare professionals are you know working extremely hard. Uh but um if if you can ideally have a good conversation about the topic and then not too so not too late afterwards have it documented as well, ideally at the same time as you're having the discussion and actually put it down on paper when everyone's on the same page. And an ABIT form can help that, an advanced statement can help that, advanced decision to refuse treatment, ADRT uh form can help that, and actually having a lasting power of attorney for health and welfare in place can help that as well. All these different things. We've got a plethora of things you can choose from. If you're listening to this blog, have a look at the website wells.nhs.uk forward slash AFCP. Scroll through it and have a look at those documents. There's one that says advanced statement, there's one that says advanced decision to refuse treatment, uh, there's one that says record of best interest decision making, and there's also a link to the treatment escalation planning form. So all those different things can can help make your understanding better and your future planning a little bit better, which is what we're hoping to do.

SPEAKER_01 35:07

Thank you. And and just for our listeners, we'll be including the link to that in our show notes. And on a similar, similar topic, I suppose, are there any you've mentioned these resources already, but any other resources, campaigns, training, things available for people who are interested in future care planning, whether they are care or healthcare professionals or or people who are just general listeners who are interested in it, that they could go out and uh and check out.

SPEAKER_02 35:31

Yeah, I mean we've a few years ago we recorded lots of videos. They're on advanced careplan.org.uk. Um, so lots of videos about the different formats that I've just mentioned, and you can click on one of the short videos uh that you can have a look at, and people talk about advanced decisions to refuse treatment, advanced statements, advanced care planning more generally, future care planning. So you can you can uh certainly have have a look at those. The older people's commissioner for Wales has published uh a document on future care planning. So you could Google Older People's Commissioner website, and I'm sure you'll put a link in in the podcast site as well. And then they've got um everything I just said in in written format and and probably not as verbose as I've been. So uh, you know, you've got all the different formats, the advanced statements, the ADRTs, the discussion about what a DNA CPR form um and conversation should look like. All those things um should be there. So there are resources, there's plenty of resources. When I started off in this, there was hardly any resources. You couldn't actually get an all-wells advanced decision to refuse treatment form, which one of my patients with motor neuron disease said, you know, this is terrible, really. All right, I really want to have one of these and I want to put it in my notes and I want to give it to my GP to log on my record, but there isn't one. I have to go to Alzheimer's, which I don't have. I have to go to Alzheimer's.org.uk to download one of these forms, and then it has the Alzheimer's logo at the top of it, but that doesn't pertain to me. So um together uh because of what she said, together with some patient and carer groups, we we actually created an all-Wales advanced decision to refuse treatment form, which is available via the site as well. So all those things are explained, all these resources are there. There's now nearly too many resources uh across England and Wales and Ireland and other places, but whatever your preferred format is, maybe you like to listen to these sort of things via a podcast and then you learn your things there, or maybe you prefer videos, have a look at YouTube as well. If you type talk CPR into YouTube, you'll see my face again talking about do not attempt cardiopulmonary resuscitation decisions and why they might be important on that topic. So there's there's plenty of resources, whatever format you prefer. Uh I think we've sort of gone away from the just the very bland blue NHS patient information leaflet that people always give out in clinic. We still have those as well, if you want those, but uh I think people source the information in myriad ways, and we we just have to adapt to that. In fact, you know, what would be good is if you could have have some sort of app that everyone can use uh that asks a few key questions about future care planning and then guides you towards what sort of documentation or planning you you should ideally make. You know, that that sort of app I think um probably exists already and I don't know about it, but um you know there's uh certainly ones like um I think my wishes is uh a friend of mine actually James Norris has has set that up as a website, My Wishes, where you can actually document your future care plans and I'm sure I'm pretty sure he's amplified as as well that you can actually access it on your on your mobile phone and and go through it quite systematically as well.

SPEAKER_01 39:01

Fantastic. So plenty of stuff out there for people to check out. And as I say, we will be including uh some of the links in in the show notes to this. But we are more or less out of time. So thank you very much, Professor Mark Talbot. Mark, thank you for joining us. Um really, really enjoyed our conversation and and hopefully plenty of stuff there for people to get their teeth into if they're interested in future care planning. Um thank you. Thank you very much, Sam. I've really enjoyed it. Thank you. Brilliant, thanks very much. And to all our listeners, goodbye, Will Vauer. Bye-bye.

SPEAKER_00 39:44

Thanks for listening to Age Matters, the podcast that shines a light on growing older in Wales. We hope today's conversation got you thinking, smiling, or maybe even talking. If you enjoyed the episode, please leave a review, share it with friends, and hit subscribe so you don't miss out. You can follow us on social media by searching for Age Cymry. Head to our website to find out more about the work we do and how you can get involved, or give us a call on 029-20431555. All the links are in the show notes. Until next time, because age matters, let's keep talking.