MENOMORPHOSIS

#108: Planning For End Of Life Care With Clare Fuller

• Polly Warren • Episode 108

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What if you could ensure your healthcare wishes are honored, no matter what life throws your way?

In this essential and practical episode, I chat to Claire Fuller, an expert in advanced care planning, to tackle a topic that’s crucial for all of us—not just for aging parents or relatives but for ourselves, too.

We dive into the often-overlooked process of preparing for end-of-life care. While it may seem like a heavy subject (don’t worry, this episode isn’t!), it’s something we all need to think about—and the sooner, the better.

Claire introduces a brilliant house analogy to help us understand the key elements of advanced care planning. She breaks it all down into clear, relatable, and actionable steps that anyone can take.

From creating a lasting power of attorney to communicating your wishes with family, we cover how to ensure your voice is heard when it matters most. Plus, we’ll share tips for making these conversations more approachable and meaningful, so you can take control of your future with confidence.

What you’ll learn:

  • Why advanced care planning is essential for everyone—not just the elderly
  • The “house” analogy: a straightforward way to understand the process
  • How to start meaningful conversations about end-of-life planning
  • The importance of lasting power of attorney (and busting common myths)
  • How proactive planning empowers you and eases the burden on loved ones

Tune in to take the first step toward making life’s toughest moments just a little easier for you and your loved ones. 💬✨


To access Clare’s website: www.speakformelpa.co.uk or website

To find out more about making your Lasting Power of Attorney or Advance Care Plan Contact Clare or https://speakforme.co.uk/contact

To find out more about Advance Care Planning go to Advance Care Planning Explained or https://speakforme.co.uk/advance-care-planning-explained You can access the infographic that Clare uses to explain the different strands of Advance Care Planning and also download a free Advance Care Planning Explained PDF (at the bottom of the page).

To find out more about Lasting Power of Attorney go to: https://speakforme.co.uk/services or Lasting Power of Attorney There is a free FAQ page and guide at https://speakforme.co.uk/faqs or Frequently Asked Questions

Access podcasts at https://speakforme.co.uk/podcast-2 or podcast   

Access blogs at https://speakforme.co.uk/blog or blog

To gift a Lasting Power of Attorney for a loved one  go to https://speakforme.co.uk/speak-for-me-shop or shop  

To find out more about my membership The Inner Space go to: https://www.pollywarren.com/theinnerspace

Email me at: info@pollywarren.com
https://www.pollywarren.com/
https://www.instagram.com/pollywarrencoaching/

Speaker 1:

Are you, like me, riding the roller coaster of midlife and menopause and eager to get back to living your best life? Are you tired of low energy, a short temper and endless self-doubt? Well, it's time to stress less and shine more. It's time to ditch the worry, reclaim your mojo and unleash your inner brilliance. It's never too late to transform, and you're certainly not too old, and, in my opinion, midlife and menopause provide the perfect opportunity to do just that. Join me each week for uplifting stories and expert insights on how to feel as good as you can and create a joyful, purpose-driven life you truly love. So, whenever you're ready, let the beautiful metamorphosis begin. Hello and welcome back to Menomorphosis. I hope you have kept safe and well this week. As I'm recording this, storm Eowyn I think that's how you pronounce it is raging outside my window. Apparently it's the fifth named storm of the season. It seems an awful lot to me, so I hope you anyway you're keeping safe, warm and cosy, because it is really seriously windy outside my window today, so you may well hear it as I'm recording this. Okay, on to this week's episode. Now.

Speaker 1:

This week I chat to the brilliant Claire Fuller, who is an advocate for advanced care planning. Now, if you don't know what advanced care planning is I didn't either it's a subject which, if I'm totally honest, I hadn't given a huge amount of thought to until I listened to Claire talk on another podcast. Advanced care planning is, very simply, planning for the end of your life, and it's something which, as midlife women, is really truly important. A lot of us still have parents who are getting older, and so it's really important to discuss with them their end of life care and if everything is in place to make things as easy as possible for when they do die and, by the way, I don't want this to be a pessimistic episode about dying, but the fact of the matter is we are all going to die at some stage, so it's really important to be ready for that, whenever that might be. But I suppose the big realisation that struck me when learning more about Claire's work was that I hadn't even considered creating an end of life plan for myself, which, after chatting to Claire, I'm absolutely 100% going to do.

Speaker 1:

In our culture, we don't like talking about death, despite the fact that it really is the one certainty that is going to happen to every single one of us, which is something Claire and I discuss in this conversation. We also talk about the importance of normalising these conversations. So normalise talking about death, talking about advanced care planning and Claire tells us how important it is to start these conversations as early as possible, as often in which she's seen they're often left too late and that can have a really significant impact on people's lives. Claire also introduces a model of advanced Claire planning which I really like. She likens it to a house with different strands and it just makes it really easy for us to understand. And that plan includes the importance of things like having a lasting power of attorney for your loved ones and advanced decision to refuse treatment, things that you probably only think about if you are in that situation. But, as Claire tells us, you really can plan for these things to make life so much easier, not just for yourself but also for the wider family.

Speaker 1:

Claire is a registered nurse with 30 years experience in end of life care. She's worked in hospices, the community and acute sectors as a clinical nurse specialist and she's also a consultant nurse for the gold standards framework. Claire is a cqc specialist advisor for end-of-life care and she's also a lasting power of attorney consultant. Claire is the owner and director of speak for me, which helps organizations to improve end-of-life care, and she also provides excellent professional and public education about palliative and end-of-life care and advanced care planning and has an amazing podcast called Conversations About Advanced Care Planning. This is such a valuable conversation and Claire is so patient with me and my ignorance in this area, but hopefully it will help you to understand why advanced care planning is so important. So, without further ado, please welcome the absolutely wonderful Claire Fuller. Wonderful Claire Fuller. So I am delighted today to have Claire Fuller with me. Good morning.

Speaker 2:

Claire, thank you so much for joining me on Menomorphosis. Good morning, polly, and I say thank you so much for inviting me. I'm really looking forward to our conversation this morning.

Speaker 1:

Oh well, thank you. I think. The first thing I'd love to know is you are what you call yourself, an advanced care planning advocate. For me and for the listeners, what does that mean, and how did you get into that?

Speaker 2:

So my background is in palliative and end-of-life care nursing policy. I've done that for 30 plus years, which is slightly embarrassing to admit, because it makes me feel ancient. What is quite unusual about me is I've worked across all spectrums of healthcare. So you might think of palliative care in a hospice, for example. Lots of your listeners will think, oh, palliative care means hospice. But I have worked in hospices. But I've also worked in what we call the acute sector, so general hospitals. I've worked in the community. I I've also worked in what we call the acute sector, so general hospitals. I've worked in the community. I've worked for the CQC, which is the Care Quality Commission, doing inspection work, and for a team called the Gold Standards Framework who teach advanced care planning. And I've also been a carer for a really close family member who died at home.

Speaker 2:

So you think with all that experience I sort of know what to do. And I don't know if we'll dive into this as we carry on talking, but my god, it was really hard being a carer and the dots just didn't join up. So despite being a carer, despite working across all of those different systems, I found that time after time after time, advanced care planning was simply done too late to have a positive impact on people's lives. We spoke about it too late and I also found that there is great, gross whatever word we want to use confusion, not only among members of the public, but among health care professionals. If you were to interview somebody tomorrow about advanced care planning, you're going to get a completely different podcast and a completely different answer.

Speaker 1:

So I set out to try and I we were, as we were chatting before, I said to you, just by looking through your website, listening to some of your podcast episodes, I have already learned so much about advanced care planning and I thought I knew, I thought you know, I thought I was relatively prepared, and we're going to talk about, um, lasting power of attorney on this, on this episode, because I have a lasting power of attorney.

Speaker 1:

I am a lasting power of attorney for both my parents, but what I didn't really think about was that I also need for myself to think about people who are listening. We're all midlife women mainly, and it's a time where our parents, if they're still here. It's something that I'm sure people are beginning to think about before it's too late. But I think what really hit me very hard was like it's never too early to start planning for this, and these conversations are so important yet are so taboo at the same time, and I can see that that is something you're very passionate about trying to trying to change. Let's talk about, then, advanced care planning what are the different strands of it and why should we start thinking about it right now?

Speaker 2:

so we should start thinking about it right now because it's there are so many different strands to it. If that makes sense and leaving it too late it. If you have these really important conversations some people call them difficult conversations, I call them important conversations If we start normalising them and we get used to talking about what we see on television, what we see in the media, it becomes less onerous and it becomes less scary and it's normalised. If I can give you an example, can I be slightly ashamed in admitting that I've just started watching EastEnders again. I got hooked. I watched one episode Christmas Day. I haven't watched it for 25 years, bang addicted.

Speaker 2:

But, joking apart, they're running a storyline with early onset dementia. So we can use things like that with our friends and families. So never too early, because it's so easy to be left too late and I can throw data at you to say such a tiny percentage of us do have plans in place and it can impact the very, very end of our life. We prepare for birth, don't we? We think about birth planning, yet we don't put the same thought and care into our end of life plans. Saying that end of life care is so much more than about the last days of life and that's very much my message. So if we move on to think about strands, this is where people get really, really confused and, based on all the work that I've had, based on all the experience, I've taken all of these strands and created a model of advanced care planning to try and explain it. So if I try and talk you through it, let's see if I can make sense of it and you let me know if it makes sense yes okay, great audience.

Speaker 2:

So I'm going to draw a house with you and I'd like you to visualize the house that I draw, and each bit of the house I draw will be a strand of advanced care planning. So every house is built on a strong, firm foundation. Otherwise you can't build a house, and the foundation for advanced care planning, or the house of advanced care planning, is asking the question what matters most to you? Okay, and it sounds really simple and, um, there's actually a what matters most movement as well, and it's about shifting the emphasis away from what is the matter with you, polly, to what matters to you okay. Yeah, as a health care professional, if I ask that question of a patient or a person, it can drive the care I deliver. For example, if you've got somebody that what matters most is to see their child get to school, you know it might be a young mum with an early onset, a young mum with potentially a cancer diagnosis, and the most important thing to her will be to see that child at school. So she will want treatment over comfort, potentially. That's one example. If you ask that question of somebody else, the most important thing might be to be at home to have a 60th wedding anniversary. So that will drive the care that I deliver and that will drive the choices that I help that patient make. Does that make sense? So it's as simple as asking what matters most, because people get really scared and think I don't know how to do advanced care planning. But a simple response to that is to say ask what matters most of yourself and share that with your health care provider. If I then draw you some windows in the house, ok, the first window I'm going to draw you is to think about what you do want, and that could be a statement of wishes and preferences. There isn't one form, so I can't say Polly, all your listeners, go to this form, because then you can fill in a statement of wishes and preferences. It'll vary from healthcare authority to healthcare authority, from place to place, but it's simply about the things that matter to you.

Speaker 2:

I've done an understatement of wishes and preferences, but that will be updated throughout my life and I often joke and say if it was relating to the last days of my life, it's things like being at home is important to me. My family is important to me. My cats are important to me. Family is important to me, my cats are important to me. I love wearing pajamas, I hate wearing a nightie, that sort of thing, um, and I also put things about my character as well. So, um, being outside, being independent, all these things matter to me, so any one of us can do a statement of wishes and preferences. They're not legal, but they're really useful and if we go on, I don't know if we have time to explore things like best interest decision making, but the more we can write about what matters most to us, the more power we have, the more autonomy and the more control.

Speaker 1:

Yeah, and I think that's what it is. It's about control when you're in a situation where you perhaps have lost that capacity to be able to make those decisions for yourself, and it's not saying that you might not get that capacity back so we've diverged slightly.

Speaker 2:

So the thing that I've explained is a statement of wishes and preferences. It's not legal, it's just saying what you would like to do. Yeah, okay, just your preferences. Um, I'll answer what would happen if I'm just going to really quickly describe the other windows. If that makes sense.

Speaker 2:

so, statement of wishes and preferences, what you do want. You've then got a window I'm going to draw you that window of what you don't want, and that's an advanced decision to refuse treatment and that is a legal document that we can come back and pull apart, if that would help. Yeah, you've then got another window of who would speak for you and you've touched on that with your lasting power of attorney. And then the final window would be that of a legacy as well, and we all think about legacy, of things like wills. But you've got an incredible website, you've got an incredible body of podcasts, so have you thought about your digital legacy? So what would happen to your podcasts in the event of your death? Have you set up a digital legacy? Have you set up a digital legacy? Have you set up a digital will and these are often things that we don't think about what would happen to our Twitter account, to our Facebook, to our Instagram? They're all part of legacy.

Speaker 2:

Or, at the other end of the spectrum, is it a letter that needs to be written for a child when they reach their 21st birthday? There's a whole spectrum of legacy, and the final little window of advanced care planning is thinking about end-of-life care and that's specifically about the care of a person in the last years, months and days of life as well. But so much of advanced care planning. Advanced care planning, planning, poly, is to do with what you do want, don't want who to speak for you, and a legacy, as well as that really smaller window of end-of-life care that we associate with medications, with DNA, cpr do not attempt cardio or one of your resuscitation conversations but by viewing it as those components, what matters most what you do want, what you don't want, who to speak for you, legacy and end-of-life care. You can apply that to anybody, in any area, at any stage of any healthcare. You just pull out I think you use the word strand you pull out the strand that you need. That's appropriate to you.

Speaker 1:

Okay, that's really nice and clearly explained. I love that. The foundation in all the different windows that really makes it really useful and helpful at the end of your life and I just want to reiterate that doesn't necessarily mean when you're old.

Speaker 2:

No.

Speaker 1:

Does it. I mean, we all think, oh, I don't need to do that now because I'm you know, I'm in the middle of my life. I don't need to do that now. We don't know what's around the corner and you know, I'm someone who always tries to look on the bright side of life and is a very positive person. So I suppose maybe I've slightly shied away from these conversations and from looking at the end of life, because it feels quite negative, but it's gonna. It's not a matter absolutely, and I suppose that's probably what you're up against a lot of the time in terms of trying to get your work out there yeah it.

Speaker 2:

you mentioned the word taboo earlier and there is a tremendous taboo around um talking this. But you know, I hope by saying, thinking about things like a lasting power of attorney, any one of us could lose capacity, and you've alluded to it at any point in time. It's not older age and we've had the example of COVID, haven't we, With that sudden, unexpected, tremendously shocking health event that we all went through. Who's to know how many things around the corner? Who's to know we've had a recent spell of ice down here? Who's to know if I get in my car and drive, I won't have an accident and lose capacity?

Speaker 1:

I heard you say on on one of your podcasts. It's about it's not about kind of always thinking about death and dying, it's about life and living, and that's. I absolutely loved that, because that's a totally different way of looking at it. It's about how can you live as well as you want to, as okay, let's talk about lasting power of attorneys, because, um, I think this is something which is which I I know just a very small amount about, but can you maybe for the listeners to say, you know, tell them what is a lasting power of attorney? Um, and and again, why is it so important to have it in place?

Speaker 2:

yes, so really good questions. So a lasting power of attorney, or an LPA, is a legal document that enables you to nominate a person or people to support you to make decisions or make decisions on your behalf if you lose capacity and you can lose capacity through those three things that we've mentioned yes, a long-term illness like dementia, a sudden accident or a sudden illness as well, so any of us could lose capacity at any moment. Lots of people think roundabout I think it's 73% of people think oh, I don't need a lasting power of attorney because my husband could support me with my bank, for example, but you have to consent to allow somebody else to use your joint bank account. So if you, if you're not, if you don't have capacity, you lose the ability to consent.

Speaker 2:

Um, similarly, around about I think 72 percent of people think well, I don't you know, that doesn't apply to me because I've got a partner or a child or an extra kin, but probably an extra kin has no legal authority, no legal status. It's just somebody there's a nurse that I'd know who to ring at three o'clock in the morning. So a lasting power of attorney enables you to consent ahead who could support you or make health care decisions on your behalf. So you've got an lpa for health and welfare, you've got an lpa for property and finance.

Speaker 1:

So I I mean this was new information to me. I did not realize that you I kind of thought it was more about you know, for my parents, you know I've got and I understand that my mom's got Alzheimer's. My dad is her main carer, so if anything happened to either of them then obviously I just you know it was. I've really understood why that was so important. I've really understood why that was so important. But what I didn't realize is that me, as I'm married with my kids, if something were to happen to me, that no one would be able to access my bank accounts or anything like that without an LPA. That really struck home because in a way, it's in in a crisis. If something awful did happen, it's just leaving even more confusion and difficulty and challenges for the people who are left to pick up the pieces.

Speaker 2:

So really it's something which we need to be doing for the other people around us, not, you know, not just for ourselves it's an act of kindness, it's an act of love to do it um lots of your, your listeners, will know kate garroway and the story with her husband um derrick wasn't he he sadly died and kate has been so powerfully public about lasting power of attorney because they actually didn't have derrick, didn't have an LPA, right.

Speaker 2:

So you know, you think, an incredibly powerful public woman and a public voice, but she couldn't access the money and I can't remember if it was for mortgage or for insurance or something, but she was really vocal about. You know, this was the impact on their life because they did not have an LPA in place so if you don't have an LPA in place, can you eventually access the money?

Speaker 1:

You can eventually, but you have to go through a lot of loopholes.

Speaker 2:

Yeah, good question. So if you don't have a lasting power of attorney in place and lots of I didn't mention in the intro that also workers that are lasting that they didn't have the ability to sort of coach themselves and do it, so I've tried to a great lasting power of attorney service what happens if you don't have an LPA in place is that you have to apply to the court of protection to be a court appointed deputy. There's so many words and syllables. We're doing this right. So you apply to the court of protection to be a court appointed deputy for somebody who's lost capacity. So you can only make an LPA once you've got capacity. Once you've lost capacity, you can't make a lasting power of attorney, and it's there for a point when you've lost capacity. Does that make sense? Yes, that does make sense.

Speaker 1:

So to define what losing capacity means, can we just dive into that a bit? So where, when, when has someone lost capacity?

Speaker 2:

these are such chunky questions you're asking me and I haven't answered much about the quarter protection, so I can come back to that. But these are such chunky questions. Capacity is probably one of the most um complex questions to answer I can imagine it is so complicated in an.

Speaker 1:

I mean I, I'm sorry, I'm really landing you in it, but yeah, you'll be mean to me this way, sorry.

Speaker 2:

So if I was to say that capacity is, I can't give you a binary answer. So it's not as simple as saying you've either got capacity or you've lost capacity. And we like things tidy in our society, don't we? But?

Speaker 1:

you can't sorry.

Speaker 2:

The bad news is you can't. It's hard to say you've got it or you haven't. So capacity is defined by the Mental Capacity Act 2005. And to have capacity, a person's got to be able to understand the information they're given, to weigh it up, to think about the pros and cons and then to communicate a decision back to you. Capacity can fluctuate from day to day. From time to time a person with dementia, you'll know you might find the afternoons are great, but the mornings are not.

Speaker 2:

So great so, coming back to your example, if you're acting as an attorney, it's your responsibility to say when can I give the information at the time that my loved one is most receptive? That's your job to do that, not to think. Well, we're going to have a conversation in the morning, but that's a difficult time. So remember that capacity can fluctuate. And the other really important key message I'd say is that it's decision-specific as well, and this is often lost in translation. So a person can have capacity to decide what clothes to wear, to maintain that autonomy, what breakfast to have, but they might not have capacity to sell the family home. So I can't give you a quick and easy answer, but it's really important to remember it's time specific and decision specific, so each one is taken on its own.

Speaker 1:

Um, yeah, I mean, I suppose, ultimately, all of this is done with love by your loved ones, and you want the best for somebody. I suppose, though, sometimes there are occasions where that isn't the case, and it can be very difficult amongst families if they don't agree if someone is making decisions. I mean, how does one deal with that? That's another difficult question. I know.

Speaker 2:

So I would. I would um upstream that question a little bit. And it's really important, when you set the lasting power of attorney up, to have the conversations at the beginning. Yeah, okay. So it's very easy to think of it as a tick box and it's oh yeah, must do an lpa, but it's conversations you have when you do the lasting power of attorney that are so important.

Speaker 2:

So, to avoid, um the the challenges that you you've mentioned, um, first of all, start at the beginning. So you know, when I work with a family, I'm really clear that you may you, you mentioned your case you've got two. There's two of you acting as an attorney. Yeah, there could be two of you, there could be four of you. But what's really important to say? To mention this sounds really brutal, but your opinion doesn't matter, your sister's opinion doesn't matter. What matters is your mum's wishes, preferences, values and beliefs. So that's taking us right back to that advanced statement of wishes and preferences that I mentioned earlier. So it's about having the discussion right at the beginning of a lasting power of attorney and reminding attorneys that they're acting for the donor. So you and your sister may have completely different worldviews, that's fine. So when you draw the document up, be really about, um, what it is, and it's about supporting your mum to make decisions, not giving your your view, and that sounds brutal, but that's what the law tells us, um. Secondly, it's about having as many conversations, um, between you as a family as well, and it hasn't got to be family members. You can have friends as well, so have conversations that matter.

Speaker 2:

Again, going back to the soap operas and things, have conversations that matter. So these are all the things to prevent problems. Um, yeah, think about how it's drafted. Are the attorneys acting jointly or jointly and separately as well? That they're really important things that you need to discuss when you're setting up. If you do hit a point and let's take it to the extreme where there are disagreements and potentially issues of abuse or safeguarding, then it is a question of going there at this, something called the court of protection, and cases can go to the court of protection where there's anxiety that there is abuse or safeguarding. Anybody can go and listen to cases at the court of protection. Protections one, and it's highly recommended. The learning I've done through that is phenomenal okay, that's brilliant, thank you.

Speaker 1:

When having these conversations I mean, we, you know, we all know we need to be having them and they are important conversations, but I suppose, as we alluded to at the beginning, it's something which we don't openly have. So someone who might be listening to this episode is going gosh. I didn't know any of this and actually this is something I really need to talk about, but finding it hard to actually have that open conversation with their partner, with their parents, have you got any tips on how they might start having these sorts of conversations?

Speaker 2:

Yeah, and that's a really important thing to talk about and at the forefront of so many people's minds. It will depend where somebody is in their journey in their health care illness, if you like. The tips are going back to reflecting on social media as well, so reflecting on the things that I've spoken about earlier is really useful to say. You know, I watched this episode and it's made me think. I'd like you to know this about me. It's made me question this Can we sit down and talk? So that that's a really nice, easy answer.

Speaker 2:

If you're talking about having conversations with the people that we love and they can be really challenging, can't they? If you've got elderly relatives that you know, oh, my goodness, I need to have this important conversation, not difficult, important conversation. Um, dr katherine manix talks beautifully and I'm going to sort of paraphrase some of her work about appealing to somebody as a daughter. Okay, so you're not asking to take control, you're not trying to take control away, but you're saying things like mum, you know, you, you went to hospital last week and it really made me think I'm worried because I don't know what to do responsibility around.

Speaker 1:

It's not just, you know. I think we're all like, no, I don't want to talk about it, I don't want to. Actually, it's kind of trying to make your loved ones realize it's not just about them, it's about it's about, yeah, the rest of the family as well and what might happen if, and it's it's just, yeah, trying to be as frank and open. I mean, we've had the same. You know, I've talked a lot about this with menopause. It's the same thing. You know, the more we can be open about it, the easier it becomes, and that now we can see is out there and everyone's talking about it and it's just, it's great, we can all be very frank and open and honest.

Speaker 1:

And I think the same needs to happen with this and with death, because we just don't talk about it and we just need to be prepared. I suppose that's what it is, isn't it? Let's talk about another one of your strands. So you mentioned the. It was the advanced decision to refuse treatment. So again, could you just explain what that is claire, yeah, and what, what decisions it allows you to make? Okay?

Speaker 2:

so an adrt is an advanced decision to refuse treatment. So if you think about a lasting power of attorney, that's a really broad um funnel, if you will. So come back to your example. Your mum has given you authority to support her, to make decisions, but she hasn't told you exactly. You sing for me. It doesn't say you must say this and you must do this, you must do this. There is space that you can put preferences and instructions down, but most people leave that blank. She's just given you that authority, yeah, and you then have the conversations behind it to know what to do.

Speaker 2:

So if you imagine that really broad panel, an ADRT an advanced decision to refuse treatment enables you to refuse a specific treatment in a specific circumstance at some point in the future. So to put it in easy terms, it's about protecting your future self, okay. So, for example, if I was to you give an example, like um, long-term illness, like motor neurone disease, we know that people with mnd might face the position of having to have a feeding tube at some point in the future. They have the ability to refuse that tube through an advanced decision to refuse treatment. It only kicks in if you've lost capacity.

Speaker 2:

So sometimes people say to me look, I'm really worried about doing an adrt because if I have that road accident? We've seen examples of people that are paralyzed from neck down, that have a meaningful life, learning to paint through their mouth or or communicate otherwise. If you've got capacity, absolutely fine. You carry on saying what you want. This only kicks in without capacity, so it enables you to refuse a specific treatment in the future. You have to be over 18. Say what you're refusing and you have to say I'm refusing that treatment even if my life is at risk because of.

Speaker 1:

That could be typically intravenous antibiotics, cardiopulmonary resuscitation, feeding tubes are an example of the things you might want to refuse okay, because again, that is something I think many of us believe that if you tell somebody, a loved one, that that's what you would want, you think that that's enough, but it's obviously not so. Is that? Is that legally binding, then, that document?

Speaker 2:

Yeah, so an ADRT, if it is drawn up correctly, is a legally binding document. So the lasting power of attorney has to be registered with the Office of the Public Guardian to make it legal. An ADRT does not have to be registered by anybody, but you do have to write it and fulfill that strict criteria that I've briefly mentioned right, and if you don't do it, then who makes those decisions for you?

Speaker 2:

just if you don't do an adrt. Decisions are made in what's called your best interest. The best interest is a formal statement. It's not for the best you know, as we would term. Oh, it's for the best for our children. Yeah yeah yeah, that's ben nine for the best. Best interest is a formal term within the medical capacity act and it means taking into account and listening to the person's wishes, values and beliefs.

Speaker 1:

So it goes to best interest decision making oh, my goodness, there's so much to um to think about. What I particularly loved is when you say that actually the most important part of it all is thinking about what matters most to me and I suppose anybody listening. That is something to really consider and to think about, because, again, it's not something where we do think about it. We might say it in passing, oh I wouldn't want that or I would want this, I wouldn't want that or I would want this, but actually it is worth spending a little bit of time actually thinking about it, having conversations about it and then getting something drawn up. If then someone goes right, they've listened to this conversation Brilliant. Thank you, claire, for all the information. What do I do now? How do I even start? Because it can feel quite overwhelming to start and draw up an advanced care plan or getting um a lasting power of attorney.

Speaker 2:

So what? Where do they start? Okay, I'm always going to give you multiple answers to these questions. So, again, it's going to depend on who they are and what they want and where they are in that state of life as well. So I I work with clients to do a full advanced care planning. So I'll sit down with people that are well, people like touchwood, you and me, that just want to get everything pulled together. So that's one extreme of the spectrum you can. You know that's something that I do and I work with clients. Just they like to get things pulled together and tidy. I would recommend that you just think about that house I've drawn and start thinking about how could that apply to you. You're never going to do it. Everything in all of my go, are you? None of us have that organized. But think about. Have I thought about open donation, for example? Have I thought about a will? So just think about that model and think about what you can chip off can I just ask?

Speaker 1:

you mentioned there a will, so where does that fit in with all of us? Because that's, I suppose, the one thing which most of us do think about is right, have I written my will?

Speaker 2:

I'm going to talk about making a will, so imagine that house that I've described yeah so many people have got a will yeah let's back on and let go to the sister and make a will, but why don't we do all of this other stuff that matters? Yeah, it's strange isn't it?

Speaker 1:

yeah, it is. I mean, I'd love to know your thoughts. I suppose what's coming up now is like when we are in that state and you said that you at the beginning that you cared for a relative. How far down the line can you state in any of this that you would you know you're ready to go, or keeping within the the law? Sorry, I don't know if I made that very clear at all, but I suppose a lot of us would think right, if I'm in a situation where I'm being, I'm back at home, I'm being cared for and I'm ready to go, what do I? You know? How do I state that in this? Um, I don't know if you know what I'm trying to say.

Speaker 2:

I do, I do. I'm trying to look at you, I'm trying to sort of think am I thinking what you're thinking? Um, so it's a really chunky question. I'm just going to digress slightly and say that a lot you've asked me slightly a moment or two ago about when we should think about this and and what I should have said was think about all long-term health conditions as well. So I think that's really important to frame advanced care planning when a really good point to think about is if you have a diagnosis with something like COPD, if you have a cardiac diagnosis. So I'm just going to take one step back before I go forward, because I think that's really useful to people to think about framing it within an illness and then thinking about beginning, middle and end stages of that illness and appropriate planning along that journey.

Speaker 2:

To come back to the question that you aren't asked, probably, um, it's a hard, hard to answer in some ways but easy in others. So, arguably, right from the very beginning, what matters most to you will drive the care okay, and it's really important to think it's not an either or situation, and we're very poor at society at doing what I call parallel planning or walking two roads. So my work is very much about saying it's not an either or approach. We can care for a 96 year old lady that's fallen on the ice and has got a fractured fractured hip, fractured neck of femur. We can do everything we can to rehabilitate. But we can also walk the path, so to speak, and think what would happen if it didn't get better. Does, does that make sense? Yes, so I think breaking it down into we're either doing this or this and a lot of public discourse recently has supported this binary either or nature, whereas if we, if we view it as parallel planning, walking two roads with a long-term illness, it's you don't suddenly hit a point where you think, well, this is what's happening to me. Yeah, does that make sense? Um, to answer in more detail, all the things we've spoken about can be done at any point in time.

Speaker 2:

So I've done my lasting power of attorney. I'm happy to share, and you've shared with listeners. You've done yours, lasting power of attorney. Um, polly, I'm happy to share with your listeners that I've also done my adRT. I've done an advanced decision to refuse treatment because I know there are situations that I would not wish to live my life in. So I've done it. So you say to me when can you do it? You know I've done it. Now, coming back to the example you said about caring for a family member at home, to drill down in that example, it comes down to what matters most. Now, if somebody has said to you what matters most is to stay in my family home because I've been married for nearly 60 years and that's where I want to stay put, then if you explore that, that means that you don't want to go into intensive care, you don't want to have cardiopulmonary resuscitation, because if you have cpr you then have to go to hospital.

Speaker 2:

So it it's as gentle and as subtle as that it's not about saying, well, you're going to reach the end of your life and we're going to do that. It's about saying, okay, so if I'm hearing you right, you want to be at home. Yeah, let's wrap the care to enable that to happen. Yeah, does that sound a bit more palatable than saying, right, yeah.

Speaker 1:

Yeah, it's so empowering I hope so. It's really choosing what you want, and it feels very much sometimes that we are choosing for what we think is best for that person and actually often that isn't best, because we want to keep them alive for as long as possible because of our own attachment with them. But ultimately this is much more empowering for us because we can, if we've got it written down, it's what we want and we have actually given it thought, we've discussed it and everyone is clear. So, yes, it does make.

Speaker 1:

It really does make sense and, um, I'm definitely going to be contacting you after this um, to be to be setting mine up and I and I really hope that the listeners kind of actually will give this some serious thought that actually don't leave it till till it's actually too late or until you are in crisis, because when you're in crisis, this is the last thing you need to start thinking about. For anybody listening, is there anything else you feel like? I know we haven't got much time and there's so much in this, but is there anything which you feel is important also to talk about, which we haven't talked about, or to mention about advanced care planning?

Speaker 2:

I think I would just come back to the parallel planning as well. So I would just encourage people to think about parallel planning, encourage people to think about parallel planning, and I would encourage anybody listening that is at the beginning, middle or end of their journey to have a conversation with their doctor, with their consultant, to say things like and a really strong phrase is things like I'm the sort of person that likes to know the next steps. Can you help me understand what's coming? And I'm using work from an incredible team for the waiting room revolution here, and there are hints and tips that we can give to invite yourself in to be part of your healthcare journey with your provider. So what I would like to say is that for people to feel empowered. You know, advanced care planning is a public right and a professional responsibility.

Speaker 2:

So I'd encourage people to feel empowered. You know advanced care planning is a public right and a professional responsibility, so I'd encourage people to invite themselves in to discussions with their healthcare providers. What can I expect to happen next? What does the middle stage of this illness look like? What does the next stage? So don't just focus on the immediate results. Think about the longer term as well. Yeah, amazing.

Speaker 1:

Thank you so much, so claire. If anybody wants to, they feel after this right. Yes, I want to come in. I need to sort this out. How could they find out more? How could they get in touch with you? Please do share all thank you.

Speaker 2:

So, um, my website has got a wealth of free information and I disseminate that through blogs. So if any of your listeners have got a question about advanced care planning or lasting power of returning, feel free to contact me and I can anonymise it and make it into a blog, because I learn I'm learning all the time. I've said I've done this for 30 years, but my I'm learning every single day. So let's learn from each other. Yes, absolutely. Um, you can listen, you can read my blogs, you can access my podcasts. So I podcast about, um, all elements of advanced care planning. So all of those windows or strands I explore through um my podcasts, and you can access them at wwwspeakformeelpacouk Great.

Speaker 1:

I will put that in the show notes. And can I just say how long have you been doing your own thing for your own business, for after your, you know, after being a nurse for so long?

Speaker 2:

yeah, so I'm still a registered nurse. I started my own business when, back in 2021, I think it was so moderately, it doesn't feel long ago, so I'm still learning.

Speaker 1:

Absolutely yes so I love that. So this podcast metamorphosis. It's all about reinvention at midlife, and it's never too late to to start something new and, you know, use all your wealth of experience and put that out in the world. So, yes, it's a real celebration of all of that. So, yeah, thank you so much, claire, for coming on the podcast and sharing all your wealth of knowledge and experience, and I'm really hoping hoping that, if you are that this is going to really spur you on to at least start having those conversations at home with your loved ones and to put something in place. So, thank you so much.

Speaker 2:

Perfect. It's been great talking with you this morning, thank you.

Speaker 1:

I hope you found this conversation as interesting and as helpful as I have, and it is something I am absolutely going to action and urge you to do that too. Get in touch with Claire. All of her details are in the show notes of this podcast. So, yeah, it should be as easy as possible for you. Thank you again for listening to my nephroposis. I really do appreciate you showing up and listening to these podcast episodes. If you've enjoyed it, please do rate and review, and hit that subscribe button if you haven't, as it makes a big difference to me.

Speaker 1:

When people subscribe, it means that this podcast is going to be more visible to other people who might benefit from hearing it. If you would like to receive my free weekly newsletter, which is a dose of inspiration every week, you can sign up for it at polywarrencom. Do come and follow me on Instagram at polywarrencoaching. I would love to collect, and if you want to sign up for a free inner space session, you'll also find the link in the show notes. Have a fantastic week and I can't wait to chat to you next time. Lots of love, take care Bye.