Everything End of Life.
This podcast is dedicated to talking to experts and others about all aspects of death and dying. You know, that thing we don't really want to talk about!
As a hospice carer and former psychiatric nurse as well as writer and former Theatre director, I invite guests to talk about their roles in and what to expect in the last four weeks of life. What happens to the person dying, what help is there, what to do before and after the event.
Many of the families we go in to see have one thing in common and that is that they don't know what to expect. I thought that a Podcast may help and then discovered so much to explore that is of interest to people such as alternative funerals, what do Hospices actually do, what role do religions play?
So join me for the first interview as we begin this Podcast with Clinical Nurse Specialist Becky Rix where we grasp the nettle and discuss what happens to us generally in those last four weeks.
Time to explore "Everything End of Life".
Everything End of Life.
Maxine Last: Embracing End-of-Life Care, Empowering Conversations, and Fostering Compassionate Change
After a profound encounter with death as a live-in carer, Maxine Last found her calling in end-of-life care. Join us as Maxine, a Clinical Project Lead at Suffolk and North Essex Foundation Trust, shares her transformative journey and insights into the differences between palliative and end-of-life care. Together, we unravel the emotional and practical complexities of navigating careers in this deeply empathetic field, including the valuable lessons learned and stories shared during pivotal moments in hospice and hospital settings.
Prepare to explore the critical role of communication and preparedness in end-of-life experiences. We discuss the need for open conversations about wills, power of attorney, and medical interventions, drawing on poignant anecdotes from guests like Becky Ricks and Shawn Leek. By emphasizing the importance of understanding patient wishes and the impact of having these conversations early, we aim to empower individuals and families to make informed decisions, ultimately alleviating some of the anxieties surrounding mortality.
In our discussion, we also explore the creative potential within charitable endeavours, like the Butterfly Service, highlighting how resourceful community engagement can foster positive change. By advocating for patient rapport and showcasing initiatives that bridge gaps in care, we underline the profound influence compassionate care has on patients and their families. As we reflect on our own journeys, we invite you to contribute creatively to these meaningful causes, ensuring that support and advocacy continue to enhance the lives of those at the end stages of life.
For those interested in what Palliative care looks like at home there is "The Last Kiss" (Not a Romance)
Available on Amazon now
https://www.amazon.co.uk/Last-Kiss-Romance-Carers-Stories/dp/1919635289/ref=sr_1_1?crid=13D6YWONKR5YH&dib=eyJ2IjoiMSJ9._59mNNFoc-rROuWZnAQfsG0l3iseuQuK_gx-VxO_fe6DLJR8M0Az039lJk_HxFcW2o2HMhIH3r3PuD7Dj-D6KTwIHDMl2Q51FGLK8UFYOBwbRmrLMbpYoqOL6I5ruLukF1vq7umXueIASDS2pO91JktkZriJDJzgLfPv1ft5UtkdQxs9isRDmzAYzc5MKKztINcNGBq-GRWKxgvc_OV5iKKvpw0I5d7ZQMWuvGZODlY.fqQgWV-yBiNB5186RxkkWvQYBoEsDbyq-Hai3rU1cwg&dib_tag=se&keywords=the+last+kiss+not+a+romance&qid=1713902566&s=books&sprefix=The+Last+kiss+n%2Cstripbooks%2C107&sr=1-1
Hello and welcome to Everything. End of Life with me, jason Cottrell and guests, and today my guest is Maxine Last Max. Hi, max, hello, hi, and your title, your present job title, is I've forgotten, I just had it, we were just talking about it Project Need End of Life Care. Okay, so yeah, tell me a little bit about that and then we'll talk about your journey to how you got to where you are now, what it is that you actually do.
Speaker 2:So I'm starting with what my role is. So I'm a Clinical Project Lead, friend of Life Care and within that role it's very varied Suffolk and North Essex Foundation Trust and so we span community nursing as well as our community hospitals and acute hospitals at Ipswich and Colchester. I have the privilege of being involved with projects in all of those areas and I also line manage our wonderful butterfly service who support dying people in our hospitals by the bedside through volunteers who give their most precious of resources of time. Um, and that um yeah, is is really, really super important, especially at the end of life absolutely so.
Speaker 1:Let's, uh, let's do an immediate split. So end of life care very different to palliative care so when I was working for the hospice, I was a carer in end-of-life care, which was the last four weeks and more or less the last four weeks. But palliative care is, do tell.
Speaker 2:So palliative care is the support to people over however long.
Speaker 2:So it could be right from the very start of a diagnosis with people who have serious life-threatening or life-shortening illness and to help people to live as well as they can up until the point of dying.
Speaker 2:So that could be with physical symptom control, that could be with emotional support, counselling and things like that. It could be spiritual support and things like that. So it's much broader and it's sort of an umbrella term that end of life care sits within it. So end of life care is also varied in that in the community, end of life care is very much viewed as the last year of life or the last phase of life, and so the last year of life we try and preempt and prompt people to think about would you be surprised if this person was to die in the next 12 months? And that is sort of, yeah, one way of identifying that sort of thought. Within the hospital care settings and, like you say, within the hospice care settings, it's much more focused around, as you say, those last weeks and days of life, but essentially we still want to be identifying and recognizing those people who are in their last year of life as well okay, well, I'm just going to uh give the book a plug.
Speaker 1:I just normally have a copy, I have a copy just, and then here it is, look there, really unprepared today, clearly so it's. When I joined, uh, the hospice, uh, as a carer, it was because of COVID and because nobody wanted cooking oil and that's my mainstay business is being a cooking oil supplier. So I went back to the nursing side of things and became a carer. But I was so amazed about the work that you folks do and in that last four weeks I just had to write a book about it because it was a sign of life as a former charge nurse I'd never seen and I knew very little about, and I think that's very telling of a lot of nurses doctors we have.
Speaker 1:We're very good at trying to get people better. We're not really that great understanding when that time is coming to an end. No. So the book I wrote was called the last kiss, not a romance. You can find it on amazon. So there you go, and it covers 15 visits of what it's like going to people's homes and their stories. Really so, and the stories that you will have come across will have been wide and varied.
Speaker 1:I've no doubt. So let's just jump out of the narrative for a moment and go right back to the beginning. How on earth did you get into this line of work?
Speaker 2:Well, back in school when I did my health and social care that I actually ditched halfway through ASA level because I thought it was an absolute load of rubbish. I told myself I'll never be like working in a care home or anything like that, and then naturally I ended up doing that. So home life was quite turbulent for me a lot of the time I ended up doing that. So home life was quite turbulent for me a lot of the time. My parents did struggle with alcohol use and you know, yeah, it was you know it could be quite difficult.
Speaker 2:Yeah, it could be quite difficult at times. So I did leave home fairly early and I became a living carer. I just took an opportunity that presented itself, and so I became a living carer. I was just turned 18.
Speaker 1:Turned 18 and straight out of not doing health and social care at all.
Speaker 2:But having said that, whilst I was a teenager, I was very much acting as mum to my younger brother and sister for a large number of years.
Speaker 1:So you're actually living health and social care basically already.
Speaker 2:Yeah. So I've always wanted to help others and primarily that was born out of helping my brother and sister and myself to cope through some difficult times. So I kind of find it quite natural to be there for people, I suppose, and be the person that they would like me to be at that time, what they need. And so I was a living carer for a lovely lady called Mary and she, after three years, died in her sleep through a heart attack. Okay, and um, I found, I found her in the morning. Um, and I was only like 21 and she, uh, yeah, she'd been, she'd been dead a while, but that was the first time I'd seen a dead body really and and certainly, like obviously I'd grown to love her.
Speaker 2:So, um, it was yeah. Anyway, the paramedics, when they came in, were like step away from the body, leave Mary to rest that really is um yeah it's phenomenal, isn't it?
Speaker 1:and I think for a lot of people actually, you know, even though you've seen a lot of that since oh yeah, you know up until 30, 40, 50 years old, quite often nobody has seen somebody else die, you know no, and it's really important, jason, to say that that actually in most cases dying follows the sort of a natural process, and there's a really good video by Catherine Mannix that anyone could have a look Just to plug that.
Speaker 2:I think just from an educational perspective, it's a really gentle way of explaining what normal death looks like, what most people go through, and that it is a very natural process. So, but obviously my line of work now has sort of like gone into the more sort of um, more complex death and dying, whilst also supporting those more natural deaths also yeah, that's brilliant.
Speaker 1:I mean, we were. I was lucky enough to have becky ricks on uh a little while ago. So we went through that last four-week stage of slowing down and the markers that you start to see of losing appetite drinking tired and sleepy. I mean it's okay For 99% of us. I think it's not that bad a thing. It's just. I think none of us want to leave the party, you know.
Speaker 2:No.
Speaker 1:That's you know, especially at our age. Well, you're around your half my age, but um, but uh, you know at any age. Really, I kind of you know, don't go gently into the night. Actually I think I do, really do go gently into the night. It's much nicer than struggling yeah, absolutely.
Speaker 2:I think it's.
Speaker 2:None of us know when it's coming to us, and we're of an age where we see so many young people being diagnosed with various illnesses not just cancer related ones that you know are likely to shorten someone's life.
Speaker 2:And I think, you know, whilst there's loads of advancements to try and keep people being treated and potentially curing things, that's not always possible, and so we all it, I know for myself, like knowing that I've got a will and last and power of attorney sorted, knowing that I know who my funeral directors are, and things like that brings me comfort because I know my family aren't going to have to worry about it and my friends and you know, um, you know my, my partner, aren't going to have to worry about any of that.
Speaker 2:If I get hit by a bus tomorrow and they don't know what to do, there's no scrambling about. So, and I think if we were able to live in a world where everybody had, you know, wherever possible and whoever felt able to, to be signposted to that kind of mindset, yeah, yeah, just to get it done whilst you're well, whilst you don't have to worry about anything else, then when you're really unwell, you can focus on what really matters, because you've already planned ahead and thought about those things that you know in an emergency situation are the last thing you want to be thinking about absolutely.
Speaker 1:You know, I was talking to uh, sean Leak, the mental health runner, about this, you know, and we were.
Speaker 1:Yeah, he's a lovely guy so he's great we were saying the same kind of thing. You know it's um, being prepared, being organized, you know it's. There's a thing where we say to each other oh, people don't like talking about death, but I don't think that's really entirely true, because it's quite academic for us unless we're faced with it. Yeah, we don't like talking about what's going to happen way off in the future, just as I'm not gonna. I was saying to Sean I'm not going to be worried about organizing the holiday.
Speaker 1:I've got 10 years time because it's in 10 years time absolutely and we all think it's going to be in 10 years time or 20 or 50 years time. You know so absolutely.
Speaker 2:But the thing is, with death and dying, that is one thing that is certain the same with losses is you know, you know it'll be going to happen to all of us, through you know, a relative dying or a close friend or a neighbor, anyone, um, so we, so we're all affected by death, dying and loss all of the time.
Speaker 1:But we don't know when We've just got really sidetracked there. There you were with Mary. Oh sorry, that was my fault. I went off on a tangent, I think, and the paramedics came in and said step away from the body. That's where we kind of left off.
Speaker 2:But yeah, sorry. Yes. So Mary had died and at that point I needed somewhere else to live. So I relocated to Ipswich and I've never really gone straight too far from Suffolk and where I had found to live was very, very close to St Elizabeth Hospice, and so I took that opportunity to apply and see if I could start working there, because it kind of with Mary dying, I think it lit a flame within me to know that I could deal with that kind of scenario. Now I feel like I can do this.
Speaker 2:So I joined the St Elizabeth Hospice and I stayed with them for five years and during that time I did my nurse's training. I absolutely loved working there. But whilst I was doing my nurse's training I fell in love with the hospital care, setting that busy, fast pace, but also still within me thinking how can I make end-of-life care in hospital the best it can be, considering they're not at the hospice or whilst we're trying to get them home, you know, and those sorts of scenarios and and equally as well with palliative care like how do we break bad news and how do we make that better for people and their loved ones and you know well, most of the time it's down to communication and and how we do that, and making sure that that is actually done in the first place, and being honest with people when they want to be, you know, told honestly about a situation yeah, I mean, and that's that's difficult conversations to have, isn't it?
Speaker 2:very difficult.
Speaker 1:And yet, as I was saying with Becky, she had a particular conversation with a fellow who didn't want to have a DNAR, but he was getting really close to the end and she was trying to explain to him. Well, if you do have resuscitation, it's not as pretty as it looks, it might leave you more damaged than and these are things that are quite hard to hear, but best to be said if you can catch it in the right way, because then he he understood that his wife might be left looking after him in a really poorly way instead of just the poorly way he was. And you're right, those conversations and I think you know when you've worked in this field for a while the conversations get a little easier, but not for the recipient, no.
Speaker 1:No, it's very important to remember that I love seeing people have that conversation because it's beautiful in a way, to see how well the professionals go in there softly, softly and do it really beautifully. And that's not always the case. Because having my GP saying to me well, your mum's probably got about, you know, the weekend to live and that's the end of it. I went, oh okay, and then he went off to play golf and he was just telling me about it. Well, I don't know if he thought he was just being trying to soften the blow that way, but it's like your lungs gonna die. Let's see into that. So I don't think we always get the best bedside manner from people, but if it's a repetitive industry, like worked in the hospice, you'll know. You know what to say and you know how to couch it.
Speaker 2:I think that's a beautiful thing to actually watch yeah, and it's how we best share that with others, so that our clinicians and well all our colleagues know how to sort of approach those sorts of conversations with a bit more confidence in their abilities and really not underestimating the importance of listening to somebody and just allowing time for information to be processed and just not rushing into something like just taking a bit of a step-by-step approach. Um, it does always help to have a bit of a warning shot as well of information. So you know, to start on a conversation with, I might have some bad news to give you. Is there anyone that could be with you, you know, for when I sort of come back, and those sorts of sort of yeah, little warning shots are really useful.
Speaker 1:So there you were, I've done it again, sidetracked you and done your nurse training.
Speaker 2:Yep.
Speaker 1:And you've chosen what sort of area to work in, because you had to stay at the hospice, didn't you?
Speaker 2:Well. So actually I did get a lot of say where I went and I knew that I wanted to be somewhere very general because I just love everything. In fact, a lot of people say you're either a surgical nurse or a medical nurse, but I think I'm an everything nurse. I love every single bit and I could have quite easily have gone into theatre to be a scrub nurse, but I ended up choosing a medical short stay unit, which I absolutely loved. It was, I used to say it was organised chaos and, and I am a very organised person so it fitted me perfectly and it was very fast and so many different conditions and things coming in that we were treating and supporting and the team on on the ward that I was on were just phenomenal. And then, yeah, but I was I was a linked nurse on there for end-of-life care, naturally, and kept still being drawn back to that every step, really.
Speaker 2:So pursuing a career that was around end-of-life care in some way or palliative care was always where I was going to end up, and so it was just navigating the stepping stone. So I didn't take the traditional route of spending loads of time within a hospice care setting and I actually found it an advantage to be within the acute medical sort of area of care to where I am now. So then a job came up with acute oncology, which I thought having some cancer experience is probably not a bad shout. But I didn't want to pigeonhole myself into working on a cancer or oncology ward, although I had done some additional shifts like bank shifts, they call them on that ward of the oncology ward and some other wards around the hospital, like care of the elderly and gastroenterology, looking at, you know um, abdominal tummy issues, stuff like that.
Speaker 2:So getting a one a one experience absolutely yeah, because, like you know yeah, like any one of us could, you know require end-of-life care for any number of reasons. It's not just cancer and there are so many non-cancer related conditions that you know are absolutely just as deserving of having good palliative and end-of-life care. So, and it's probably about 50-50% split.
Speaker 1:My sister. She went down with COPD and she had that thing where she got ill and then went down a bit and then didn't quite come up to where she was, went, got ill and that traveled that down over a few years and, um, that was complicated by the fact that she wouldn't give up her fags.
Speaker 2:So you know, but you know it's patient choice and you know if that has brought quality to her life. You know, I know there's an element of of um, you know trying to promote healthy lifestyles but equally, if you're being faced with, you know your last year of life. At the end of the day, it's what's important to you, what matters most to you.
Speaker 1:And sometimes Her role is definitely what matters to her.
Speaker 2:Yeah.
Speaker 1:Yeah, she loved that. Yeah, she was never a great one for exercise, but she was a great little artist, so she would sit and smoke and and paint and uh that's lovely yeah, that's so nice, that's better yeah. I was very inspirational to a lot of quite a few other artists as well, so which was lovely, you know yeah, there we go. So you're, and then you're in the hospital setting. How did you get from there to here so acute?
Speaker 2:oncology. I stayed with them a little while, so, um, we visited wards um in the hospital setting how did you get from there to here so acute oncology? I stayed with them a little while, so, um, we visited wards um in the hospital and sort of triaged patients that were having acute um cancer issues either relating to treatment or their disease or their condition deteriorating. And so that's where, again, I was using my passion for good palliative and end of life care, making sure that palliative care referrals were done early and being able to facilitate that discussion. Change from active treatment to this is no longer curative, but this is what we can do. So there are still things we can actively do, but it's not going to cure you from the condition that you have.
Speaker 2:And then a job came up with the palliative care team and specialist palliative care team at Ipswich, and I absolutely seized that opportunity, more so because I wanted to make sure that they were aware that I was interested and that I had an absolute passion to be within that area of care and to remain within the hospital doing that and, to my absolute surprise, I just about got an interview and then, yeah, went to the top of their list and was handed the job and I was absolutely gobsmacked and just couldn't believe it. But the difference that I feel that I've made to people's lives in the time that I was a palliative care CNS is immeasurable. The team and and you know all all special palliative care um teams will will know just what sort of complex situations that we're invited to to support and give recommendations and you know, yeah, just help in any way that we can and it's just an amazing feeling to be able to help somebody from one of the darkest moments in their lives to bring a little bit of light to a very dark place.
Speaker 1:You know that is really well put, because one of the things and I've talked about this before one of the things that was really lovely when I was just when I was doing caring because we'd go in in the morning for an hour with somebody and then to help them get up, and then an hour in the evening to get help them, you know, get settled for the night.
Speaker 1:And, um, when we'd go in to some places, there'd be one relative had been looking after someone for ages and their shoulders would be up here and they'd be, oh, I don't know what's going on. And then, because they then knew that there was going to be somebody coming in to support them in the morning and in the evening they weren't on their own anymore and there's a wealth of expert teams and there is single point, which is somewhere they can contact 24 hours a day, their anxiety levels would just kind of sink and by the time we went in in the evening they would be coming up. Yes, have a good day. Would you like a cup of tea? Should we have a chat? And it's you know, to watch that transition so rapidly. You know it gives you such a great feeling and you know you must get that all the time by seeing the change in people and also helping them through those really difficult moments.
Speaker 2:Yeah, and it's building rapport with people and being an advocate for somebody and being a person that they can come to and know that they're met with no judgment and know that they're being taken seriously, and their concerns are going to be escalated if somebody else isn't doing that. I think, yeah, I really take pride in being an advocate for my patients and you know, when I was certainly in that role now I really, really, really value being an advocate in a more broader sense of the term, but also for our colleagues to, you know, highlight all the really good stuff that's going on with end of life care in our hospitals and, yeah, lots of initiatives and projects that wards are, um, you know, leading on in response to previous poor end-of-life care experiences that might have been had I mean it's fair to say that when you go into hospitals, quite often outside of the ward they'll have, uh, what are we really good at and what do we have to do better at?
Speaker 1:and quite often end-of-life care will be that what do we have to do better at, and quite often end-of-life care will be that, what do we have to do better at, and that'll be on the outside of the ward. I've seen that in a few hospitals and you know I wonder sometimes how, how they, how do you, how do you make that better? How do you identify why it's not as good as it could be?
Speaker 2:I mean that's a really yeah. It's such a difficult question, that one, because it's got so many different variables as to what's impacting that particular thing and it could be a particular person. It could be a difficult dynamic, it could be a particularly challenging situation. It could be just on that particular day they had short staff, or it could be on that particular day they had short staff, or it could be on that particular day that a relative was maybe unhappy for some completely unrelated reason, you know, and it just takes one downfall to make the dominoes fall. And so it's important to say that actually there's so much good going on and not to lose sight of that and focus on the negatives and things like that that we do have in our hospitals and to try and create a culture of of seeing what's good and how do we job, isn't it?
Speaker 1:because and this is what I've seen, generally speaking is it's a continual on when those, when I see those signs outside, there's a continual striving. When you go into that ward and you talk to the nurses there and you say, well, you know what are you doing about um, improving, and like the one thing that always comes out is we're trying to improve our communications that I think will always be.
Speaker 2:Yeah, I think in terms of communication, it's difficult when you've got like lots of new staff coming in and staff leaving, so you get like lots of really good staff upskilled and things like that, and then you have like an influx of newer staff and it kind of is a revolving cycle.
Speaker 2:So end of life care will always be a priority and something to work on, because it always has been and it always should be, you know, because it's just as inevitable as coming into the world and, you know, delivering babies and such like. So, but you know, we try and promote healthy, transparent, honest conversations with people, obviously after finding out their information preferences in the first place and just telling people you know that this could happen. So using a phrase such as you know your loved one is so sick they might be dying sort of softens that blow, as we were talking about earlier, and is a useful tool that we're promoting the use of in hospitals at the moment and we're seeing it used so much more now, which is absolutely brilliant that people are being identified as being so sick they might be dying.
Speaker 2:To try and action that gap, yeah, that that need for people being identified earlier than the point that they're taking their last breaths, so that they can have all the support available to them and offered to them, such as, like you know, car parking permits or a comfort blanket or butterfly volunteers to sit beside and for companionship, and signposting, and, you know, the chaplaincy team, and to make sure that we can prioritize side rooms so that somebody could have a private room. All of those things are born out of being identified at the earliest point.
Speaker 1:That this is what could be happening?
Speaker 2:yeah, because otherwise you've just got no time to put all of these things in place. If you're identifying someone and we within our hospital acute hospitals have got a digital platform called watch point last days of life, and so currently that's how we make visible in a an electronic format. So wherever you know, for instance I, wherever I am in the hospital, I can see who is dying within the hospital. But that's only as good as the people putting it on there, putting somebody on there at the time to ensure that you know patients and their loved ones and their carers have all the support available to them that they need.
Speaker 1:So that's going back to that being organized thing, isn't it? And saying you know, the better experience you somebody's going to have depends upon how well organized the system behind that, that whole area is organized, and I think that's you know. That seems to be what your main focus of your job is to coordinate and make sure that all of those, uh people are pulling together to make that service.
Speaker 2:You know, soft at the point of delivery and, yeah, I, I mean I certainly have an influence over a lot of things that are going on in the hospitals. A large part of my job is communicating things that we're doing through end of life steering groups. So whether that's within our ESNEFT end of life steering group or whether that's other ones that are, you know, a bit more to do with Suffolk and North East Essex wide or things like that, I have a lot to do with data collection and reporting and have influence over sort of, you know, highlighting needs for education and areas that need additional support and any projects that are up and running. That either I can sort myself with obviously lots of people, stakeholders and collaboration with other colleagues involved too, but then also to support those that are trying to get a project off the ground as well and to celebrate that too.
Speaker 1:Well, one of the projects that is getting off the ground at the moment is the Compassionate Communities.
Speaker 2:Yes.
Speaker 1:Initiative that Sean and Greg Cooper, I think, have put together and been really pushing forward, which is just creating great connections out there between people and identifying people as being compassionate champions, if you like. So it's a little bit of recognition, and you've been quite involved in that, I think.
Speaker 2:I have, yes, so I'm part of the network. So the network is sort of the initial group that we were pulled together to achieve compassionate city accreditation, for colchester and suffolk are now starting their journey into that accreditation as well. So, um, yeah, it's really awesome to sort of see how things are progressing and how different the two are. But yeah, as you say so, compassionate communities is all about that 95% of time that people living with dying experience and death and loss are not spending with healthcare professionals, so that 95% of the time is spent within the community with our friends, with our family, you know, with the local shop and the pub, and you know our community centres and our churches and all of these other things. You know voluntary groups and charitable organisations and all of that other support that's out there other than just your GP or doctor at the hospital and your nurse, specialist and those sorts of things. So, yeah, so we play a vital part in meeting Ambition 6 of the Palliative and end-of-life care national ambitions, preparing each community to be able to help, and so obviously our community come into our hospitals. We need to be able to sing from the same hymn sheet and make sure that that information and signposting is given back to the community so that they are empowered to be able to stay at home for as long as possible. And one of the ways in which I'm doing that with the service that I line manage is through the butterfly service, because we are unique within our end of life volunteer service that we have centres at Ipswich and Colchester hospitals so people can just drop in and say hi, they're supporting the last phase of life within those centres, so they can signpost to treasures within our communities and they can refer as well to services. They've got a lot of skills behind them themselves. So all of our coordinators are dual trained as compassionate companions. So the compassionate companion service in the community of Suffolk is supporting people with advanced care planning conversations in their own homes.
Speaker 2:So my vision for the future is that our volunteers will be able to support, if they feel like they would like to be upskilled in that area, to be able to support with the non-clinical elements of advanced care planning, which is just that human-human interaction of understanding what matters most to somebody. And we can do that just through a cup of tea and you know, just having a chat you know that you'll find out, you know, interesting and important information to what matters to that person and their family. So it doesn't need a doctor or a consultant or a nurse to do that. So, but that conversation has to have been started by a clinician that this is what might happen. Would you like to prepare for that or have conversations that plan for that?
Speaker 2:Those conversations take time and clinicians and really busy hospital staff certainly don't have that time to spend what's needed. So the community is where that really sits is. We need our community to be able to. First of, community is where that really sits is. You know, we need our community to be able to, first of all, know that that resource is there and then to feel able to use it to the best of their ability for their own benefit, um, you know, and for their family's benefit I love this idea of having a bank of people.
Speaker 1:If you like, like that you can call upon.
Speaker 2:Yeah.
Speaker 1:Somebody just needs to talk about. You know what they think their journey might be, what is important to them. We had, didn't we have in the hospice, I think we had a pamphlet where you could write down what you want your preferences to be, but not necessarily just about end-of-life care, but all the way up to leading to there, and that's an amazing thing. I also I'll just flag up a little booklet that a friend of mine, lady the um, a local shop, showed me and it was an american thing and it's just a little book. This you know, that you can write in, and it's got little titles at the top.
Speaker 1:Have you thought about insurance? Have you put all your passcode numbers down, have you? You know, doctors, don't even get me started. It says have you talked all your passcode numbers down, have you? You know, doctors don't even get me started. It says have you talked to your doctors about this, that and the other? And it's really quite humorous, but it's beautifully put together so that you can start thinking about that sort of thing and something like that, to be able to take that in to have that conversation and say it's not happening yet, but you know.
Speaker 2:Yeah, that's it. But, and there's so many resources like that available, and I mean obviously through colchester and northeast essex we try and promote wherever possible the my care choices register and that is in, uh, yeah, in the. In the future it is agreed that suffolk will also be having MyCareChoices register coming across to them, but the timeline for that is uncertain. But that's a really what. The MyCare yeah.
Speaker 2:So the MyCareChoices register is again a digitalisation of identifying somebody in the last year of life and shorter and being able to, well, hopefully at the earliest point, get them onto the register and being able to see what matters most to that person, whether they want to, you know, for instance, be at home for their death or primarily for their care, or whether they would prefer to be in a hospice, for example.
Speaker 2:Some people do choose to die in hospital as well. So it's important to note that, and so it's just sort of making those decisions visible to not only the hospice who host the platform, but also to hospice, to gps, to community nurses, to the ambulance service, so anyone who is caring for that individual can check that register to see what somebody would have wanted or just check that it's up to date with what the current situation is with their condition and whether they've had a significant deterioration, and making sure that that information is still relevant and correct, and that could well. It's hoped that that prevents people from coming unnecessarily into hospital because they've got their preferences clearly documented and understood by anyone involved in their care.
Speaker 1:I mean that's. It's an amazing thing to think that that's actually a linked up thing. People can actually professionals can access it and say, right, um, john Florida, groats or whatever your name is he specifically doesn't want this type of care, he doesn't want to come into hospital. My father-in-law is a lovely fella and he just didn't want to go to hospital and he was dying slowly, possibly over a year in weight, and he didn't want to know what the diagnosis was. He didn't care, he just wanted to carry on his own sweet little way until for the last four weeks I think it was five weeks, maybe I was going up to sudbury, uh and um, give him a wash down, did his teeth, for lost so much weight. I could just lift him up the bed yeah but that was.
Speaker 1:That was what he wanted. He didn't want the fuss of a hospital. Some people love the reassurance of having the buzz of a medical staff all around them absolutely but his, and that wasn't on any particular register because he didn't want to even have that conversation. So and it is then looping back, isn't it, to having that conversation? And if we can encourage people to have that conversation years before they're even into a diet, yeah, it really helps yeah you know, because you've already gone over that really difficult hurdle of saying the D word.
Speaker 2:you know death and dying that's sometimes one of the biggest things is just that fear of saying out loud that that is potentially going to happen much sooner than we think out of the way is, you know, really really helpful in guiding conversations going forward.
Speaker 1:I have a friend who I've known for a number of years, one of my customers, and he's recently well, I hadn't seen him for a couple of months. And then I went to the shop to just drop off some oil and he caught me because the shop was shut. So how are you doing? He said, oh well, I've got a terminal illness. I went well, that's a bit of a bummer. And he said yeah, no, don't worry. He said, apparently I've got about a year, but I don't know, Nobody really knows and you can see his color had changed in his face and he might come on the show.
Speaker 1:He's thinking about it. And he was so positive, he's such a positive guy. He was saying I don't know how long I've got. They don't know how long I've got. I mean, I can't. You know, I've had a great life, it's been good. I think he's about my age. He's about 62, 63. So he's not an old man by any talk of the mouth. But he's so accepting for the fact that none of us know. You know how long we've got and it's no point in getting all upset and fighting it for him. You know, but other people can be different.
Speaker 1:But for him it's such a positive attitude and, yeah, and he's still working, you know, working his restaurant things yeah amazing guy, amazing guy, and, uh, I must introduce him to the my care register, actually.
Speaker 2:So yeah, that's a very good idea, just in case, because you just never know when somebody might lose their voice and lose that ability to be able to I don't mean physically lose their voice, well, I kind of do but, like you know, but you know at a state of of where you are unconscious or maybe do not have capacity anymore.
Speaker 2:Those decisions that you know, you definitely know in your heart you want, at least you know, that those will be respected as much as possible and unknown. You know, because that's one of the more challenging things is when somebody you know like say, for instance, loved one and you know and their own grief and you know being there for that person up until that point, and then you know also juggling their own you know lives and family and whatever. So, yeah, it's just yeah, really important that people have their voice heard before there's a chance that it might not be wherever possible.
Speaker 2:It's not always possible, we know that no no, and there is so much uncertainty about sort of you know trajectory of somebody deteriorating. There'll often be signs or you know, like more recurrent admissions into hospital or um, you know things like that, um but. But sometimes there isn't. Sometimes it can all happen quite suddenly and quickly. You know um, that's just how it is. But wherever we can preempt, then I think that is something that you know can only be of benefit to people and a good thing job.
Speaker 1:It's such an amazing job it's very diverse.
Speaker 2:I'm gonna say it's all over the place, yeah yeah, I was told, yeah, a lot of workbooks is that how you do it?
Speaker 1:yes, well done god. You were told by someone.
Speaker 2:Yes, pardon you said you were told by someone something, but you were going to just oh, I was told that I could do whatever I wanted with this job, so I hope I'm doing it justice well, it sounds like you almost definitely are.
Speaker 1:There's. No, I don't think anybody listening to this podcast is going to go. Well, she's slacking, isn't she? She's just sitting around doing much. You know it's a male, you should just sit and do it. So listen. I'm going to sign off by a big thank you for coming on and explaining what you do and that whole area of a difference between palliative care and end of life care and the choices that we've got. Going on, I was just wondering.
Speaker 2:Yeah, I was wondering if I could also do a bit of a selfish plug to something I'm working on at the moment.
Speaker 1:Yeah, sure, of course.
Speaker 2:So one of the things that I'm working on is an appeal for ensuring that our butterfly service can continue, and that does require £100,000 a year to continue, I know right, but we have an appeal that myself and the End of Life Care team the charity team here. We have an appeal that myself and the End of Life Care team the charity team here, colchester and Ipswich Hospitals charity have worked so incredibly hard to develop to ensure that we can continue to support for those things that the NHS are unable to provide dedicated funding to. So anyone listening, perhaps, if you want to buy like a metal butterfly that's been made by Suffolk Ironworks or donate it or raise money in any way possible, then yeah, we'd all be super grateful and you'd be supporting your local hospital, hospitals and end-of-life care of for yourself, potentially, and everyone in your community now.
Speaker 1:So let's get practical. How do they get in contact with somebody to do that?
Speaker 2:just go on Colchester and Ipswich hospitals charity website or type in the butterfly appeal into any search engine. Yeah, the butterfly appeal yeah, yes, well, absolutely thank you. So so, so, so much no, no, no, it's good.
Speaker 1:I mean all of these things. It's. The crazy thing is is, if we had all the money in the world with you, know, I know it would be amazing, but we don't know right, we don't we have to be creative and our charity are oh they're incredible. Our charity team so okay, so go online, look up the butterfly service for suffolk and essex and um see what you can do. All right, max thank you very much, so so much for coming on it's been amazing.
Speaker 2:Yeah, it's been awesome talking with you, jason, okay take care.
Speaker 1:Good luck in the future. I'll hope to catch up with you soon yeah, absolutely take care. Thanks a lot bye.
