Searching For Meaning – Exploring Palliative Care

Searching For Meaning - Exploring Palliative Care

I don't think death is the end because I believe in all sorts of other things I just don't think I'll be in this body I think all too often we become accustomed to thinking of death and dying is existing in within the realm of medicine but I believe firmly that it's exists within the realm of us as human beings at the prison don't seem to show any growth or any change or anything like that so from that perspective it's really good but then there's always that nickel of but what if death and dying is the final common pathway everybody will die at some point and therefore if you like it is the one thing that affects the entire population something that was very much a everyday event it was a public experience people died at home their bodies were often taken through the streets of the village maybe to get from wherever they were going up to the place where they were going to be buried part of the everyday fabric of life when I was a child my neighbor elderly neighbor died on the street in front of my eyes I must have been 6 or 7 and the women of the neighborhood all I ran to my mum and told her that our neighbor had keeled over in the street and I was yes I thought she was dead and my mum and the other neighbors all came out and they knew what to do you know I have it's etched on my mind as a child to see these women holding a mirror over her face to see whether she was breathing nobody rushed to the ambulance and it was somehow there wasn't a panic nobody felt the need to save her life she was a very elderly frail woman who'd just died dying is something that we're all gonna have to deal with but yet here's something that's incredibly taboo and people find very difficult to talk about and I think it's something that's very wound up in in our culture other cultures in the world where it's not seen in in quite the same taboo way those conversations are much more open and and people don't fear death in quite the same way as what we do and with that I think what's been created and this is only my opinion is is almost psychological response to the conceptualization of death we work we fear it because we don't discuss it and it's taboo so we deny it to ourselves as I suppose almost protective mechanism I think the only way to get around that is to open the conversation dying matters is a fantastic campaign or really trying to open up that conversation really try and put death into into modern society in a way that makes it easier more comfortable to deal with where we on for dying matters week last week we actually ran a death cafe or for our members and we had the idea is is that you have a cake and everyone comes around just talks about death we also had some music and a choir singing just to really open up that conversation because obviously one of the things people like to talk about for their own funeral for example it is is the fact that they are what what music they're going to have what represents them and just and I've never been to one of these before but it was a really really interesting experience having all these different people from different backgrounds talking about death for the first time and he was certainly the first time I had spoken about it openly John Underwood who who first set this movement rolling I think was pretty inspired because he created a format a structure where anybody could set up a death cafe and invite people to come with it being very clearly on the agenda this is what this evening is about this is what we're doing here and the beauty I think is that people have responded there are hundreds and hundreds of death cafes all over the world now and and it's a safe held environment where people are invited to consider it from all sorts of different perspectives and it interests me a lot because this is what we find on our training to the minute people are in a room and they know it's socially acceptable to talk about it people open up and share their experiences share their fears and share their plans their dreams their wishes it's a beautiful model I think so and a lot of our dealers have gone out and do set up death cafes in their local community so it's another way of engaging the community it doesn't require an expert nobody's an expert everybody's there simply to explore and listen to each other modernization industrialization secularization there's a shift it shifts from being a pried up from being a kind of public experience you feel it might be taking place at home but with unit family named us in the room etc dying would be taking place in that kind of everyday familial community way to becoming something private rich lives even romanticize in the Western world I think there is developing and billons between what on the one hand is represented in everyday life we encounter death on a daily basis in social media in the news in our way of even using language and death is embedded but at the same time in the Western world I think we have over the past 100 years created a situation in which less and less people are actually close to death when death actually occurs and this gap this gap between immediate actual experience of death awareness and death encounter and the representation of symbolic death at the same time deeply embedded in our culture and meaning structures is creating a whole lot of anxiety in many people became something that was more about the person morning than the individual died and that's how a door so today societies filmed filled with images and stories about them and they fan are being told on television and soap operas or in films about individual sign that are very much another spectacular they're very much sensationalize it very much about a drama of an almost extraordinary person rather than the everydayness of an exception an exceptional regular individual each one of us comes to handling death is a absolute reflection of how we've lived our life and how our relationships have worked in a like you can't suddenly be speaking from your heart to somebody if you never have all your life or it's incredibly hard so actually it sort of rolls back how am i living my life and how will that then show up when I come to die I was 50 when I saw my first person with when they lowered his coffin into the grave somehow right always late clearing out the drawer of an old dresser they founded the letter is finally wishes Cremation fear of talking about death and dying he you could answer in all sorts of ways people don't want to talk about it because it's the ending of what they experienced in the here and now but I think there's something else underlying this and that's not just a worry about what happens the other side of death we have become preoccupied in the news and in the media with treatments that prolong life so you will never very seldom see anything in the news which talks about oh look at this fantastic way of looking after people who are dying that's that's not really very newsworthy however you can talk about oh there's a new treatment for dementia or cancer or cancer will be conquered in the next 10 years that's a good news story so I think the whole question of isolating out death and dying has something separate and special probably is one of the reasons why we're not good at talking about it if we talked about living lives well if we looked about if we looked at human flourishing which was just as important for somebody who is frail and elderly and coming to the end of their natural biological life maybe even if we had a different way of seeing older people then that would somehow change the way in which we engaged with these things because modern society is prioritized with people looking young and staying young and by definition that means not dying so the whole thrust of society now is about pretending that we're not dying so it's not surprising that people don't look at this until it's almost too late and when they do they're so terrified that there's been a whole life as lead that has not prepared them for this time so it's kind of denial big time guess the other thing that has shocked me I must say is some of the stories about the degree of denial that people encounter the sort of desperate desire to open some kind of dialog with a family member and it really being impossible to do so I've had people you know in tears talking about this to me and though I do come across it in my work here perhaps some of the people that have chosen to come to a green burial ground are making a few steps in certain ways in the way they think about things and that's that's really shocked and saddened me and I was diagnosed in 2014 with bowel cancer which was a real shock had surgery keyhole surgery thought that was it going back for tests because they just keep an eye on you and I was fine for Oh 18 months nearly two years and then they found some marks in my liver so that was in 2016 so I had to go and have my liver removed or part of it anyway which was fine thought nothing more of it and then in the November 2016 I found or they found that I had lesions what do they call him on my lungs which was basically incurable they said they can treat them but they all won't ever get rid of them and basically I was now imperative care long-term palliative care I think that most people get the to conflate the two terms so many people think palliative care is end-of-life care and vice versa without realizing that one is about treating symptoms and managing pain and the other about dying with dignity I think that people need to be more aware about what's those two types of care are that their functions are but also how they can be provided as well so many people aren't aware that your end of life care can be provided at home as a person in a hospital many people just think it's about pain management and not about the other aspects of care and many people don't realize that family members can also receive recipient receipt of that care as well to increase the quality of life for everyone in and around the person who's received a diagnosis the only way that can happen is by opening that conversation up in society and looking for those opportunities rather than being responsive when people are but when they received their diagnosis recently I attended a conference at the Uganda Constance tissue and a range of different speakers they were celebrating ten years of being in operation so that's you know for cancer services and a low resource setting that's great and there's one speaker there dr. Rajagopal he's seen as the father of palliative care in in India made massive strides in terms of making it accessible to people and he he made the point about what is actually what what his health care providing people at the moment and there was a statement he made that was quite nice that the poor people died in died misery from neglect middle-class people die in misery from ignorance and rich people die in misery on ventilators and the idea that healthcare throws everything at people for cure and that's and that's kind of something at a societal level maybe we've come to expect in terms of cancer treatments they are getting better and for certain cancers and people want cure there's a whole military metaphor that's emerging around cancer you know sort of we can be the fight you know fight cancer you know win the war and those types of things are often there's there's it there well there's there's there's good intention behind them but the impact that might have on a patient particularly when a cancer is no longer eatable you move into an incurable stay what impact that has on ER on the patients are very difficult so dr. Rajagopal was was questioning what health care tries to deliver and and I guess palliative cares put forward as a model for what health care should look like not just focusing on a physical illness that so many areas of health care do but thinking more broadly about what's the psychological impact of this illness what's the social impact what's the spiritual impact you know what what do we class as healthcare and sort of use in palliative care as a model for guiding healthcare delivery in in all areas not just looking at patients with the progressive and terminal illnesses a lot of people confuse palliative care and end-of-life care and palliative care is the overarching approach it's almost a philosophy of care our focus is to help people get from chaotic situations to some sense of containment to managing uncertainty to getting some control back and to help them so far as we can deal with the fiscal consequences of their illness distress pain breathlessness other types of symptoms many of which are actually affected as much by what a person is feeling then what actually is happening in their body in terms of what palliative care should provide and does provide in many cases is support for a patient with a progressive illness and I see it as a a patient experience in that process of dying and being supported well or surrounding the patient you know you have the family you have caregivers and equally their needs are so crucial particularly in conditions such as dementia where a patient's condition might progress the state stage where families and caregivers become the the main form of communication and an advocate for for a patient in terms of once death happens that is ultimately experienced by families and caregivers live care is a phrase in in the UK it was it was really developed in terms of the end-of-life care strategy the working definition of that is about people who are likely to be in their last 12 months of life obviously depending on what condition you're in that 12 months as it were is more or less relevant and more or less applicable but also in the last year of life it sort of is a way of thinking about well might this person die in the next 12 months and therefore is their death if you like that kind of clothes and it's a way of thinking about planning for it however some people think of end-of-life care as being the very end of life as in last days hours of life we tend to refer to that period as the dying period and therefore to try and make that clear that clear distinction last phase of life is a phrase that some people have introduced it isn't that widely used it just introduces yet another terminology into it trying to get away from the 12-month definition but still meaning pretty much the same thing so I think it is more helpful to think of palliative care in terms of the approach to care and then to think of end-of-life care certainly in this country is thinking about the last year of life ish quite a hard subject I mean I do talk about it off handily so they've done they know about no project but they know that I'm not going to go quietly and I my son has always said if I don't take stuff he doesn't have to worry about it so when I'm in hospital he means to Syria how I am always but and comes up but he doesn't he doesn't he doesn't like to know the nitty-gritty whereas my daughter wants to know everything absolutely everything and my husband doesn't talk about it very much he's them I think a couple of weeks ago I was in hospital and I came out and then two days later that called an ambulance because I obviously wasn't well enough to come out and the infection hadn't cleared up and he thought I was gonna die he literally thought I was going to die I don't remember much of it but he did say afterwards I thought that was it I literally thought that was it so I think that's getting quite a bit it's a case of you know we have to carry on we carry on for each other we carry on for the children you know to give up you want just sort of curl up in the colon and die yourself I mean you know there is life you know you have to be positive there have been so many advances you know in in recent years for medical science and particularly in a certain the cancer field that miracles do happen you know miracle believing in something you know it could turn it up tomorrow you know they I think because I'm so positive and I think I've got years to go I must admit that the the pass it out and having an ambulance come terrified to me thinking back on it and at the time when I when I felt myself collapsing I just thought I don't want to go yet I haven't finished when I live with her just so I'm there but obviously I'm married I have a child it's not really the normal thing today but I would try and spend all of my time with her it's like I don't I don't care no I'd rather spend the time of her now they don't have it even if we do argue what mother and daughter relationship doesn't argue he tries like we all keep it as normal as possible so if someone's annoyed with someone we're gonna say it we're not gonna be what we can't say that because because mom's got cancer she doesn't want it like that at all like her having cancer I think personally he's just like a word she she doesn't look he'll she doesn't feel ill but obviously she is ill so people find it really hard when she goes into the hospital and she looks normal and I'm like you're not my point of view is regardless of whether she has looks like she's got cancer she has got cancer and people need to know that if they're not going to treat her as if she's got cancer then there's gonna be issues and I know that sounds aggressive but you know I would walk to the ends of the earth to kill her I think I have to be humble in the role of being a professional and hospice and palliative care I cannot talk about preparation for death I think our prerogative and remedy is to help other people in their dying process and I think it's a very important distinction because death is implying a lot of transcendental questions a lot of questions about route spirituality and religiosity it has a lot to do with what type of symbolic immortality ideas a certain person has and it's an ultimately extremely intimate and personal question so although we can facilitate conversations around it and we can as professionals try to be as open as possible about another person's understanding of death I guess where we and I are much better at is finding a way of communicating about and around the dying process so what kind of thoughts and ideas do you have around your own dying process how do you imagine your own death what kind of fears and anxieties do you have but maybe also what kind of hopes and wishes do you have how would you like to prepare your own dying process or do you not want to prepare it at all do you want to have a fulminant and very intense dying process or do you feel like you shouldn't be talking about this at all because by the end of the day a force much bigger than you will make the decision for you I'll talk about how look at the regale but I just think because we're so close like if anything was to happen she would be there in me and I think with me like where she says I'll be the one to look after dad because she's dad's world I think there's a huge responsibility on service providers to ensure that the patients and staff and families working in around palliative and end-of-life care are really aware of the services that are available to them well I've been on dialysis now for about 12 months I have them two daughters new thanks to them enable me to dialyzer huh it was it was hard every to go to the hospital virtually every other day three four times a week thankfully her they helped a lot and it makes it much easier to bear I stopped working about six months ago I was aware that this this may happen and some while back so I prepared myself to leave work early and then now I'll concentrate on dialysis and um generally um been happy really ideally I need to lose another seven kilos if I lose seven kilos then I make the list with the other $5,000 on the list I mean it's irrelevant that there's five thousand because you're called at random and suddenly when something becomes available that's suitable for you then you're called in but generally the prognosis in while I stay on dialysis it's not great I mean I believe it's something like a maximum of ten twelve years if I don't get kidney if I do get kidney eventually I would live a relatively normal life palliative care as an approach was initially developed to cater for the needs of patients with certain severe illnesses for example advanced cancer and motor neurone disease over the past few decades it's been increasingly recognized that palliative care can be of benefit for people with a range of conditions this includes cancer but also lots of other serious illnesses such as those affecting the hearts the lungs or the nervous system we know from our research that the need for palliative care is set to increase significantly over the next few decades this is for a variety of reasons including the fact that people are generally living for longer but also linked living with multiple illnesses it's therefore vital that palliative care services are supported to expand as required and also that that we continue to provide education and training for colleagues in other specialties my ian urse told me about them and you know i knew about the is their loss listen but i didn't know that they had other things i thought they were just a hospice and it was just end-of-life care I didn't realize they had all these other functions that they could help with they had all these other little departments I mean I've had therapy through them and you know they've been really helpful and really there and you know I put micelle be poor when my time comes because I don't want to put my family through me dying in their home I don't think I don't think I could do that to you and I know you know I know people that have being cared for with is vilasa sand I know that they've been cared for magnificently and not just the patients the family as well and I'm hoping that when my time comes that's all happening for me so how did how did things start us on Christopher's well Cicely Saunders her story is well known within the movement and to a degree aspects are known more broadly but essentially Cicely Saunders was a woman who started life in nursing she encountered was troubled enormous Lee by the suffering that she was seeing particularly pain that was uncontrolled and the care of people who were dying not being treated with respect and dignity and over the course of her own development and professional life she was a nurse than she was a social worker than she was a doctor and in in that sense she did that in order to have the experience but also the authority to speak into this situation and she then sent to set up in 1967 that the hospice here at st. Christopher's and that essentially was to look after people who were dying palliative care has got much broader now than that and so this is considered the place where the modern hospice movement started there were actually institutions before that some Joseph's for example in East London was going for substantially longer but if this really was the place for the beginning of the modern hospice movement and the priority of those times was people who were dying with cancer who were in pain and so probably the most unique contribution that Cicely Saunders made was actually to define or articulate what she called total pain and what she meant by that was the the way in which pain was just not an expression of a physical problem but it was the output or the integration of the distress that was associated with suffering in this case suffering that was going to lead to death and so she described it as physical pain emotional pain and spiritual pain so physical pain whatever the pathology is that's going on causing the problem emotional pain which is the pain of passing the pain of not having resolved your relationships the pain if you like of not having said the goodbye sorry's and thank-yous the pain associated with alive relationships with people who have already died or the pain associated with processing relationships that have failed but the people are still alive and you can't resolve them and then the third part of the pain was the what in those days was described spiritual pain we'd probably call it existential pain now too as it were remove the religious connotation but essentially it's the same thing and that is the question of whether my life is amounted to much what as what I have done well and what I've done badly how I've failed myself how I failed others and of course for all human beings the question of whether death is the end or whether there's something beyond death and that for many people depending upon the cultures they come from expresses itself in a variety of ways so one of the ways in which it may be expressed in what is historically a Christian nation like this one is is that is the question of meeting my makeup linked to this also within total pain is the question that we all ask which is why is this happening to me is this a consequence of what I've done is this a consequence of what's been done to me or is this just some horrible mishap and it's all of those things meshed together that leads to total pain at the moment it seemed as chaplaincy services perhaps perceived by the public is something that is wholly religious but we know that our chaplaincy service is there to provide pastoral spiritual and religious care it's really important that patients in particular are informed about how inclusive that service is what spiritual and pastoral care is and how it can benefit them there's an onus on the providers to ensure that individuals who are who are receiving positive and end-of-life care and those around him are fully aware of what the services and the support that it can provide um so um we provide pastoral care in much the same way as chaplains which as religious chaplains would we meet people where they're at we we don't go in with an agenda or to promote humanism or or or to just to give advice or or or trying to cheer people up we're there to provide a listening year to walk alongside the person whilst they're working through their difficult times and and facing these difficult points in their life and remember someone just recently well they were telling me about a gay man that they've met and the hospital Awards he was he was just about to die he did actually come from quite religious community when he was young and and went when he came out as gay he'd had some quite challenging experiences with that community and being shunned by that community as well and when he was offered support by the chaplaincy team he felt he really wanted someone to speak to but again that he didn't feel like it was appropriate for him because of the experiences that he'd had and when he found out was someone non-religious he could speak to we were able to go down have meet with him on several different occasions and in those final days of his life really give him a little bit of comfort and obviously we it's never as much as the pain relief as what a doctor or a nurse is providing or or anything that but it's it does give people some level of well-being and yeah and gave him some comfort in those final days and that's really important for us is that when we are providing support is that it's you know you're meeting the person right where they are and yeah taking them on a journey together and going with the monitor in it's a bit well an end of life doula is a companion really fundamentally and somebody who doesn't have a medical background so a doula might come from any walk of life and they would have a particular feeling of connection perhaps with death and dying they might have had an experience of caring for a relative or a friend that's either been fantastic interesting people don't think death can be fantastic or awful and sometimes people have an impulse or a feeling that I can I can be with people who are dying and I don't feel bad about that so our training is is really drawing on all kinds of people who have a normal ordinary life not medically trained not trained as carers even sometimes who feel they have a contribution that they'd like to make to support someone to die well and to be a consistent companion someone who can respond on a practical level emotional spiritual level even if that's what's required this burial ground is one of over 360 in the United Kingdom now which is astonishingly exciting when you think that the first one was in Carlisle in 1993 and here we are in 2018 with that number existing and many more coming on each year and what's really exciting about the green burial ground movement to me is there's no one-size-fits-all so you can see looking in this picture a little bit what our site looks like and you would go to another one it would look much more formal or you might go to one where it's just got sheep grazing over the top of it and you would have absolutely no idea it was a very ill ground what's exciting about being part of this movement is seeing people responding to the freedom that they can experience here and the opportunity to connect with nature that there's so much comfort from experiencing the cycles of nature of coming to the site through the seasons in the autumn the winter the spring in the summer to see the tree that got planted getting bigger to see the wildflowers that come out at the different times of year that there's so much healing and beauty in that and and if I had a pound for every time somebody came to a funeral and then sort of cycles up to me at the end and says something like you know when I heard was gonna be up here I really wasn't sure that I was gonna like it but actually now I think this is what I want it's just about people getting to understand what's available and it's not right for everybody absolutely not but for the people it's right for it is so right so they often that the phrase which is stated when you see a chaplaincy team in one of these institutional settings is where they're for all faiths and none but the reality is that the research that we conducted on it and a London hospital was that only about 4% of chaplaincy visits were for were to non-religious people now this is not because the chaplains were refusing to go and speak to the non-religious it's because non-religious people haven't been trying to access support from the chaplains I think many non-religious people see the service as a religious one as opposed to a pastoral spiritual and religious care service which is what it actually is and and I think the only way to reach out to that group which aren't accessing the service is to make people aware of the broadness of the service and what it's there for and also how it can help the other aspect of that is by having like-minded providers in the service so we really want to see not just non-religious people but Christians and Muslims and Jews all working together to offer a complete pair care package to patients and families I think it's really important that when faced with these difficult existential questions at end of life and in other parts of people's journey in hospital that those Christians are able to speak to Christians and Muslims to speak to Muslims Buddhists can speaks the Buddhists etc etc and in the same way it's important not normally just people have the opportunity to speak to a like-minded or just person as well and I think that's the only way to guarantee that everyone will access that the service that's available I don't think any service any organization any locality sets out to provide inequality so I think that's an important sort of thing for us to remember it's nobody sets out to do that however when groups are either smaller or less visible or less vocal or has less efficacy then inevitably their access to the provision and quality of health care can suffer and I think all those groups that were in the CQC report at different ending remain groups that we need to look at really closely I think we've done some work on some of those groups so for example in the prison setting there is now a dying well in prisons charter and that's a relatively new sort of thing for people with homelessness we're looking at ways of trying to improve palliative and end-of-life care for people in that situation we've also done some work around people with learning disabilities so there's quite a lot but what we can't do is adopt necessarily the same measures for all of these groups and so what we've got to do is think about what are the adjustments are needed for a particular group what kind of actions interventions reaching out that we need to do that may be very different from one group to another but unless we pay attention to the fact that there are groups who are not getting equal access then we won't be able to address those my nurses have always said you know Macmillan Isabelle Hospice that they have always said that it's not just for me if the family want to talk then they can if the family want to know anything and they can I remember saying to my my nurses at one point I don't I don't ring you I never ring you for anything you know am i doing something wrong should I be talking to you more and they said well no because you've got a good family support that you don't need to ring her so if you you know if you want to ring us and ask question or you know whatever then you can but she said you've got a really good family network so they're there to help and I think they all know that they can talk to someone the first diagnosis for the colon cancer you know the nurse was there and we were very much taken in as as a family yeah when we found out I mean it was from you know three was three of us in the room you know Laura talked to Sean on me and it's God he said you know a real shock yeah but right from that you are you are considered it's I don't know it's a bit like yeah maternity I think when I was born yet husband no way in the world as one would turn up – yeah it's not mince work but you know similarly impressed not absolutely under present similar though I mean it's yeah it is inclusive the support is there you know I have the numbers on my phone of the various nurses and I know I can you know I could call them if I felt I needed needed a chat saying basically I mean without GPA we yeah we actually share the the same GP on the register yes obviously she's known well aware of the family and you know well aware the stress that it actually causes to people other than the person is suffering so ya know means it's there if you need it as he's an awful lot of other other support I mean January's and family groups friend groups office groups you know in personally I'm sort of we're the company I work for a very supportive as well through various charitable things that they do so you know you don't need to be alone yeah there's it's it's really true that how people die stays with the people who left behind and that can be both positive because it was an enormous ly beautiful and close experience for those that were there and it can be incredibly painful my own father was tortured by the way his mother had died she died in New York late at night she was in enormous pain and he couldn't get morphine to her and he was winging people and nobody brought morphine so he just watched her in intense agony finally dying and that stayed with him all of his life the guilt that he felt there was something he could have done and he found it very hard to forgive himself about that but then you know these things come full circle so when he was dying I thought right I must really make sure that we have morphine and we had morphine and he couldn't stand them awful in it it gave him illusions and he felt out of control and we had to get it out of his system as quickly as we could so there's no one there's no one way and I think we have to learn to be kind with ourselves you know we there's that wonderful phrase of winnicott's you can only be the best kind of parent you can be a good enough parents well I think we can only be a good enough accompany er of the dying you know we're not experts one thing I think we can all try to do is learn more about it so that we're not lost and ill-informed when the time comes but it's never going to be perfect and we have to just let that go let that be there's obviously a very now famous piece of qualitative research by an Australian nurse who who asked patients exactly about that at the end of life she was a palliative care nurse and she she sat down with them and documented what they said after she asked what is your main regret looking back at your life and and and trying to make sense of what what's been happening what do you regret the most and the interesting top 5 answers were I wish I had lived a life much more authentic and honest to myself and not a life that others had expected of me which I always find a very powerful one I think many people can really relate to this this constant struggle between social expectation and personal individual inner voice of your own life narrative and your own ideas the second one is I wish I had allowed myself to be happier I'm a third one is something many people will be able to relate to is I wish I hadn't worked that hard and I use this a lot in my own lectures and my own talks I give around the world when I talk about palliative care another one is I wish I hate had stayed in contact with my friends and family I guess this this is one that is particularly relevant for those who have been working very hard in their lives who sometimes happen to find themselves in these situations where situation were both regrets become relevant all of a sudden we've not necessarily spoke about what would happen but she says she's made a list and she's wrote it all down and she knows what she wants and I mean sometimes we joke about it so for instance she'll say that she wants this particular song played and I think and then I'll just go well now I'm gonna play this one she's like if you play that one I'm gonna come to haunt you so I think it's all done a bit there's the hope though formality there which i think is quite nice because with if there was too much formality there then it would be like she was bowing to it and she was acknowledging because as far as we're concerned yes she's got it but she's a fighter um laura is one of those extraordinary people she is an organizer you have a spreadsheet for everything including and when the time comes she has a project book and in that project but his arrangements that she wants followed for a funeral she has arranged insurance policies to cover the cost of the funeral we have a list of the music that will be played at her funeral that much as I dislike simply read that will be Laura's wish and even to the point of you know she doesn't want a headstone he doesn't need a headstone she wants her ashes sprinkled on the mercy so we can do it we can go on the mercy ferry listen to Jerry miles turn left yet again and Chuck her over the side which they will be groggy great celebration of you know of Laura as sad as it may be and his emotional paint be yeah we talked about it what rather mean I talked about it we listen to what Laura wants and would our best to to follow please set in the book but I'm also I've always had choices throughout my life I've had choices with the way I live and I'm always going to have choices about why I die I hope because I don't ever want to be a vegetable I don't ever want to be dependent on people looking after me I never want to be like that and if I have anything to do with it I will not pay that I'm hoping that you know when my time comes I just go but I don't want to end up being dependent on other people as I've got a project but and my project but that's gonna have everything in it that I want the way my funeral where I wanna be you know my will that's gonna have everything in it so that people can go to it and it's not finished because I'm not going anywhere yet but it's getting there and that's you know I've always said I'm organized I like to organize things that's why I am and you know if there's a party I'll do it you know I recognize my daughter's wedding I love doing things like that but possibly I'm a bit controlling but if I'm going to die and I'm going to have a funeral and everything they know it's gonna be my way and also if they tell me beforehand that I've got a few months I'm having the party first because I don't see why I should be dead and they should have a good time so I'm having a party beforehand if they give me you know a few months so that's what's gonna happen I mean I'm gonna live I'm gonna live until the very last second because that's all you can do the concept of a good death for an individual person is a very subjective one and should ideally be discussed with that person and those important to them we know from our experience and also the research base that there are several factors which can contribute to someone experiencing a good death these include a sense of the person feeling that they're involved in their care and that their preferences and wishes are respected as far as possible for example this can be achieved by ensuring that their looks after in their preferred place of care and that they have access to high quality symptom control in order to ensure that they feel safe and comfortable for many people a sense of legacy is important and it's vital that they are provided with the time and space to sort out their personal affairs many people feel a degree of comfort from knowing that their family and friends are being looked after both during their illness and also after they die I think it's really interesting this whole thing about a good death and somebody that I work with on my Fester we used a wonderful phrase which is she said we have to be careful of the tyranny of a good to death and I think that was very very wise it's just like birth you know the tyranny of a good birth we have this idea of how we want it to be and in reality we can make plans and we can prepare and that's incredibly important in all sorts of ways but when the process finally unfolds we cannot be completely in control of what that looks like and I think sometimes people suffer enormous lees because they have this idea of what it should look like and it doesn't necessarily look exactly like that that doesn't mean that I don't think there are things we can do to ease the process of dying both for the person who's dying from people around them and that of course you know if you ask somebody what they imagined a good death would look like they talk about pain control they took that nausea control they talk about people being able to breathe well and then they talk about the emotional stuff that the right people were with the person at the time that the things that needed to be said had been said and these things are incredibly important and we also have to just live with the imperfection that in reality maybe that person wasn't there for some reason something wasn't said and we have to be able to move forward and and not beat ourselves up about it they sound quite hard subject I mean I do talk about it off handily so they don't they know about my project books they know what I want now or at least have it down in paper so that if anything like that happens to gain which hopefully won't for a long time don't know what to do but it was very scary it was very scary and I yeah for it for all of them for you know it was scary for me and and but it was happening to me so it's a bit different for my family for a bash in Charlotte and Declan and and their partners it was I think terrifying and probably more terrifying for them because all they can do is watch whereas it was happening to me and you know but they they're helpless and I think that's the most terrifying thing for families they're helpless to do anything they just have to watch and and just be there and and and for me that that was just horrible was horrible putting them through that and luckily it was at the end but to you know finally come through and you know find out where I was and what had gone in and their face is not nice I don't want her to like have to worry about anyone else it's not about anyone else it's about her so so long as she's peaceful and she's she's at ease with what is happening then I think that's all wedding one could ask for and Salam is obviously she's got me and my dad's and my brother and our partners around her then I think that's all it can be it just need that you can't you can't have palliative care if it's not calm yes I mean it's all about the end of life so it's all about making that end of someone's life as peaceful and as happy and as non but don't worry about it don't hold back just literally cherish every single moment you've got with that particular person like don't let any silly arguments stop you from have the argument forget about it move on expend as much time as you can with that person include them in everything that you do bring them every day tell them you love them it's it's the little things because if I didn't say to mom I love you and then something happened that wouldn't have been my last gift to her so I always say I love her and I always get out the states to happen I would have won by last word to not be that I love you stay if any way else is known for it just tell me you love time flies it's unlikely that hospitals or even hospices will know how to refer on but people can contact living while dying well and now we have the end of life doula UK association which is the the professional body for end-of-life doulas and there's a referral process that they handle to introduce stool as if there's somebody in that geographical location at the moment there's the the service that's available or obviously mote all stuff within a hospital or hospice or institutional settings are tasked with providing some level of pastoral spiritual care but often a lot of medical stuff of too busy to be able to ride that so the chaplaincy team are the ones who step in to provide that service now we have a population of people who are becoming increasingly non-religious and we have a service which is provided almost entirely by religious providers and they do an excellent service and and might really like to highlight that but what's important is is that there's an availability of people who are also non-religious so those who find religion a barrier to accessing that care are able to are more likely and more readily than it and have gonna access that service recent recently over the past couple of years we've seen a growth in a number of paid staff in chaplaincy teams who are non-religious there's now around ten nationally but this is only a very small amount compared to the large numbers of people who are working in that area it's also worth remembering as well that a lot of the pastoral services have propped up by volunteers who to again do a fantastic job but similarly we only have around 200 volunteers who are out there in these different institutional setting and supporting people compared to the massive amount of religious providers so what we really want to see is a service which is being responsive to patient needs and the changing demographics in British society the the access to end-of-life care and providing good end-of-life care also means that it looks after a population that going through a very vulnerable time and if you look after if you think of ways in which you can improve care and access for your most vulnerable population then inevitably that will also improve care and services for everybody else so if you know it's a good way of focusing the thinking about the group that is if you like yeah most vulnerable really NHS England's role is about setting the direction of what we believe should be commissioned well how we believe it should be commissioned in order to achieve their care now exactly the detail of that commissioning happens locally but what we have done in NHS England is worked with our national partners so in in 2015 we published we produced together with our partners and published the ambitions for palliative and end-of-life care which I shall now show you and the ambitions for palliative and end-of-life care is different perhaps from previous strategies in that it is for all age groups it is very much thinking about what are the outcomes we're looking for and the outcomes we're looking for is that everyone has seen us as an individual that everyone has fair access to care that we maximize comfort and well-being that care is coordinated so the joined up nurse that we were talking about earlier on and to achieve that we need staff who are prepared to care and that means being prepared not just in terms of their skills and training which is important but also in terms of attitudes behavior and support from their employers from their organisation from their managers to be able to develop the resilience and and support and supervision to be able to deliver that and most of all all of that sits within the community so each community is prepared to help so the ambitions framework is very much aimed to saying actually we all have a role in this and the great thing about it too was that it was developed in partnership with organizations that not just in healthcare but across with social care as well and not just from the statutory organizations but also the voluntary organizations with patients but you know who bring the patient and public perspective to it so it's a very wide kind of partnership approach which I think has allowed us to think in a very broad way and I think as energizing that we're very proud to be to be part of that so what we now need to do is to continue driving that forward there is another element of NHS England's work which I think fits really well with this – which is the whole emphasis on personalized care and that of course is not just confined to end-of-life care but end-of-life care is a great exemplar for what personalised care means and personalized care means people having the opportunity to have shared decision-making to have personalised care and support planning to have choice but choice that is informed and supported possibly to access personal health budgets if that is what is suitable for them and it will be suitable for quite a lot of people to have the supported self-management and community supports so that they can actually do a lot out there and themselves and be supported by the community and also social prescribing which is really becoming something that is you know that is that is proving to be very helpful and useful because really what we're trying to do with everybody is to try and support people who are going to be who are facing the last year or years of their life to live as well as they possibly can until they die because that is what we all would want for ourselves really in order to deliver high-quality and effective palliative care it's important that all staff in health and social care have access to education and training those of us that specialize in palliative care have accredited training programs and we keep ourselves up to date with the latest advances in the specialty it's also a core commitment from us to deliver education and training to our colleagues working in other disciplines this education and training can be tailored to their individual needs for example based on the setting that they work in and the types of people that they look after mankind is growing in number and in age by 2030 there will be 8 billion of us with 1 in 8 over 65 in developed countries the elderly make up a quarter of the population medicine and technology continuously hack the code of life so that we're not only living longer but also better but this demographic time bomb poses challenges for foresee makers with growing pensions and healthcare bills we are seeing much more complicated mixtures of social need intellectual need and capability and practical and physical need and I think the thing that probably frightens people most of all these days is not so I mean most people will say them the thing I don't want to suffer is pain that's true but I think in the background there's also a fear of losing one's mind and so dementia and the emergence of dementia as a recognizable entity is something that's a great source of worry to people and also looking after folk who don't have a specific diagnosis but are just becoming weaker and weaker or frailer and frail a is another challenge so palliative care and hospice is having to move into different areas like this and certainly one of the things that's in christopher's that we see as an important pioneering work is being able to attune passive care to the age of the people we're looking after the type of passive care you provide to the frail elderly may be different from the type of policy can provide to people with cancer or people teenagers who are coming into adulthood so that's that's taking things on where 50 years now since some some christopher's opened so there's a new chapter there's a new generation almost thing one of the aspects that we are looking at particular is how we look after the frail and the elderly I guess I have two thoughts about the aging population one that were in a very unsustainable what's the word situation really when we you know when there are surveys done probably over seventy percent of people say that they would like to die at home and that isn't happening probably 20% of people achieve that i I think every possible effort needs to go into and finding ways of supporting people to die at home and that needs rethinking in terms of you know care packages that can support that obviously in terms of the doula role we think we think that's pretty crucial as a consistent presence for that person or maybe even to duelers working together I think there needs to be a change of thinking about how we manage acute situations when somebody is frail and elderly or terminally ill who may be at home and have what we would call an acute situation where they might have a collapse of some kind and and the the current protocols around that for paramedics and medical staff are that they need to resuscitate somebody at this point with very little consideration for their overall condition and the kinds of resuscitation that we're talking about are CPR which is you know quite brutal chest compressions you know electric shocks and it's not the kind of way you would want to see your mum and dad die at the end of their life as a frail elderly or terminally ill person so I really want to see a change in our thinking around how we support frail elderly people to have a natural death without any kind of critical intervention there's a group of doctors in North Wales who are geriatricians they're so concerned about this issue they've started a campaign where they're encouraging people to sign up for what they call I want to die in my own bed form they've couched it in beautiful simple language ordinary everyday language no no terminology and they are trying to encourage and educate people but CPR is not a solution for ordinary dying CPR is a great solution if you're younger and you've had a heart attack or you've had a cardiac arrest but CPR is being employed when somebody is simply dying from many many different what they call morbidities many different conditions that are leading them into frailty and potentially death so this and I think it has to be radically rethought because why are we doing this what is the motivation and I don't want to be callous at all but this is costing the house millions of pounds and the success rate is extremely small less than two percent of people will come through that procedure and live for longer than a couple of months so I don't understand why we do this because I can only talk about my experience and my contact I don't know you know how it is in other places omote I would hope that every area has its own form of hospice care or end-of-life care and I suppose that all depends on the area you live in the generosity of other people how the fundraising is done it all depends on who's running it and who's you know you know the general share for people in the area which although you know poverty exists class differences racial differences gender differences people say that death is the great leveler well it is everybody dies nourlangie death but depending on who you are or race you are where you are or caste you are actually living you'll have a very different experience of of your life so when when palliative care started when the hospice movement started this was done exclusively through charity there was a small amount of money that came from the government to support institutions like the one I'm in at the moment some christopher's and across the country and across the world much of the care of the dying has been driven by charity by the charitable sector the Health Service doesn't invest very much and what's happened is that in local communities people have been dissatisfied with the the deaths that their loved ones have had and so they have started up charities in their localities to support and build hospices or to provide services in the community and the government really is quite happy I suspect to leave them to it because it means that there's a lot of care that's provided which doesn't cost anything to the NHS for example the majority of hospices get about a third of their income from the NHS the rest of it is raised by local giving by the community and by grant giving organizations of one thing or another of one sort or another and that's that because what it means is that you don't have a consistent level of quality across the country where you're in a rich community that rich community can afford to fund Hospice if you go to the inner city or you go to the deprived areas around the country where people don't have the money they can't pay for those services and so if you have services that are only available are largely available from charity it's unjust and one of the important things to say as well is that the amount of income that goes into providing care for the end of life it's fractions of a percent of the money that goes into the provision of the health service in general I can't give you the exact figure others will but around one percent at the most of provision in research and certainly fractions of a percent in terms of the provision of health care actually goes explicitly to look after people who are known to be dying and I think that that's a travesty I think that's wrong and I think that if society heard that that they would be ashamed and of course many people who give to their local hospices do it for that very reason but it needs to be up there it needs to be discussed as part of how we as a society are healthy and compassionate and how we look after our own we can't do it all through the health service I agree with that but it seems rather odd so that the health service looks after people who are sick and sickness and dying is part of being human and yet the Health Service does not prioritize the care of that group of people he has it dawned on me Sydney you angry with me but then you came close and told that old fellow you said you were proud of me we can all forgive it's all of our love the love of the father spirit and son know we can all forget it's all about love but we've been forgiven imperfect we'll be you

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