Chantelle: Welcome to the latest webinar of our Rural Health Webinar Series. This webinar is Exploring Whole Person Care at End of Life and it will be presented by Dr Arron Veltre, a palliative care specialist and senior lecturer at the University of Newcastle.
The RACGP would like to acknowledge the traditional owners of the land on which this webinar is being broadcast and we pay our respects to their Elders past, present and emerging.
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Dr Arron Veltre: Hello everyone. I'm hoping you can hear me – we had some slight technical difficulties beforehand. So I'm going to keep going and assume, unless someone can get into a chat and tell me that they can't hear the audio.
Chantelle: You seem to be coming through loud and clear Arron.
Dr Arron Veltre: Excellent. Wow, fantastic. All right, so welcome everyone. Thanks for joining me on a Thursday evening and when you could probably all be looking at a super moon at the moment, so it's very good to have you all. Today's topic that we're going to talk about is whole person care, specifically at end of life.
And I'd really encourage you to, if you are joining me from some far-flung place, please when you type a chat question, can you make sure that you put in brackets where you are from because I'm just intrigued as to where people are located and I think that's always good, especially given that we're in the age of video conferencing and being very au fait with technology.
I'm currently in the mid-north coast of New South Wales and working as a palliative care specialist at Manning Base Hospital (very part time at the moment) and then also working with Newcastle University.
So, at the end of this webinar, what I'd like you to be able to do (which I'm sure you're all probably capable of doing at the moment anyway) is explaining the impact of both physical and non-physical pain in the context of palliative care, and then also to have a better definition of suffering and its implications at end of life, and then to outline a framework to assess spirituality (particularly in an end of life setting). So what I like to do is get you to possibly type in your questions. I might not get a chance to get to everyone's questions while I'm talking, but please if you do have a question you’d like to add, then I’m happy to try and answer if it's kind of fitting with where we're at, and if not, then I'll try and get it get to it at the end.
So I'm just going to need to get the next slide up and I don't seem to be able to transition that.
Chantelle: Okay, I'll take care of it
Dr Arron Veltre: Great. So I thought I'd start with a case. This case was a gentleman who I saw last year and he was a 51 year old man with a metastatic melanoma who recently ceased immunotherapy and was approaching end-of-life care. He actually had a very delayed diagnosis and part of that was because he was incarcerated (though he was recently released from incarceration after a 14-year sentence). As a result of all sorts of barriers to him getting access and things it was a very delayed diagnosis and hence he got a very bad kind of reaction to immunotherapy and didn't really get a very good response, and so the side effects ended up being a problem. He had a past history of reflux disease and chronic back pain secondary to a motorbike accident, and a past history of pretty significant anxiety and depression. He'd recently moved into a granny flat at the back of a local pastor’s house and he had also a past history of being on methadone program, opiate substitution program, as well as polysubstance use including alcohol, marijuana, and intermittent amphetamine use. Next slide please.
He had no significant family connections. He had four children to three different partners and no contact with any of those children for the last 20 years. He'd recently discovered Christianity while incarcerated. He enjoyed fixing cars (and driving them quite fast I think) – that was really all he nominated as the things he was interested in. Unfortunately he had no formal qualifications and poor health literacy, no regular income, no will, and really no advance care planning done whatsoever.
So I guess he's one of these patients that, unfortunately, I find very, very difficult. And I think there's complex issues and, usually when you have the complexity of the trifecta of an incarceration, along with polysubstance use, and then some mental health issues, that's a reasonably big barrier to overcome in any kind of life setting let alone an end of life care setting. So on the next slide, we'll talk about how he came to present to us.
He had increased pain. He was in some form of distress with that pain. He was already on really very significant doses of hydromorphone. And, as you all know, hydromorphone is five times as strong as morphine, so he was on pretty significant amounts of analgesia already. He'd had recent falls, declining mobility, and he was really no longer able to self-care independently despite getting a fair bit of help from the local pastor who he was kind of living at the back of his place with. And so from my previous webinar, some of you may recognise that we talk PCOC in palliative care and that PCOC language is the phase 3, RUG 14 and AKPS of 30. And for those people who haven't done any of the PCOCs stuff, don't worry – it's not a big deal, it just means that he was getting pretty bad in terms of his mobility and he was really deteriorating effectively.
So our next slide we're talking about the construct of whole person care. And I guess in general practice, the thing about whole person care is you guys are all actually very good at doing this already, and general practice probably presents one of the best settings to examine whole person care. So a group of researchers at the University of Queensland, Haley Thomas and Professor Geoff Mitchell, looked at whole person care and tried to describe it in terms of the various ways that it's used in the literature. It involves a whole lot of different definitions, but most of these, I think, hit the concept quite well and are already kind of being done in general practice in various ways. So it's a therapeutic relationship; its healthcare as more than just the absence of disease; it's a multi-dimensional approach which is integrated; and it's also, realistically, acknowledging that individuals have a personhood and it's their entire personhood that we're trying to treat. So nothing new for general practitioners I guess, but something I guess to think about as well in terms of whole person care at end of life.
So on the next slide, there's a bit of some definitions and the way these are interchanged in the literature as well. Some people talk about whole person, some people talk about holistic, and some people talk about biopsychospiritual, and I guess the last one of these, the biopsychospiritual, sorry the biopsychosocialspiritual model, is what we try to adhere to in palliative care. That's the model that we've been gravitating towards for a while and that involves obviously the physical symptoms as well the psychological, the social issues, as well as the spiritual issues. So I think if you're thinking about this in terms of how does this affect a patient you're seeing, and when a patient like the case we're talking about, JM, presents, one of the things that we're all trying to work out is how to manage not just the pain but then also the other aspects of his situation.
So if we go back to the pain, on the next slide, the pain is really a very difficult thing to control in a person who has a history of polysubstance use and a tolerance to medications including an opiate substitution program. But please, please, please keep in mind that pain is a subjective experience and is suffered by every single person at some stage of their life and it really kind of exists when and where the patient says it does. So as much as we all have preconceived ideas (and I do too) about whether or not we should be thinking this person requires more analgesia or what that's about (and there's obviously a whole lot of kind of history with this particular patient), we should be very mindful that we're trying to treat the pain.
And so on the next slide, this construct really comes about because of a woman called Dame Cicely Saunders, and in 1964 she wrote one of the seminal papers in palliative care talking about how there is this construct of total pain. And she's effectively the founder of palliative care or the founder of the hospice movement in in the UK. She's a pretty amazing woman if you have a look at her and have a look at some of the things she's done. She was a former social worker and then a nurse who went on to become a palliative care practitioner and commence the hospice movement. And so she talked about this case of a person coming in and she said that “One person gave me more or less the following answer when I asked her a question about her pain, and in her answer she brings out the four main needs that we're trying to care for in this situation. She said, ‘Doctor the pain began in my back, but now it seems that all of me is wrong’. She gave me a description of various symptoms and ills and then went on to say ‘My husband and son were marvelous, but they were at work and they would have had to stay off and lose money as a result of that. I could have cried for the pills and injections, although I knew I shouldn't. Everything seemed to be against me and nobody seemed to understand’ and then she paused before she said ‘But it's so wonderful to begin to feel safe again’ and without any further questioning she talked about her mental, her physical distress, and her social problems, and her spiritual need for security.” And so Dame Cicely Saunders published this in 1964 and we're still trying, I guess, to adhere to this model of the entirety of a person, because even though the pain may have begun in someone's back, it can have an effect on their entire being. And I think that's a really nice and very clever way to put that together.
So total pain, on the next slide, is defined as the suffering that encompasses five things really. And those five things are physical symptoms as well as psychosocial, psychological or emotional distress, social problems, spiritual problems, as well as practical difficulties. So for the patient in our case, JM, his practical difficulties became manifest in the sense that he really couldn't get the help that he was a requiring at home and that's what caused him to come in, but I think that his total pain construct can probably be described in the next couple of slides. And in the next slide we're looking at the visual representation of this.
So I think this is a really good way of talking about how total pain is the measure of not only the four things, but how they all feed into this construct of total pain. So, that's the visual representation of that and on the next slide we start to get a little bit of an idea about how all those things can be affected.
So, in terms of his physical symptoms and his disease, those things, and his mobility or his immobility, that's really under the physical kind of symptoms. And then his emotional symptoms – he was very scared, he was at a low mood, he was feeling helpless and very worthless because of his inability to do things for himself. And then in terms of his social situation – he was very isolated from his children along with his friends and family because he'd been incarcerated for so long and I guess this leads to the kind of spiritual pain of ‘why him’, what's going to happen to him, and how is this going to play out?
So on the next slide, some kind of key ideas to look at in how you can address some of these things. So for patients that come to you, how do you think about not only recognising their total pain, but then trying to document it? So I'm sure you've seen the pain scales that people can use, whether it's the numbered pain scale or whether it's the faces pain scales – there's a whole lot of different pain scales out there. But importantly, just try and get people to document their pain and then try and see if they can not just do that, but also try and keep some form of pain diary. So try and document a diary of what happens over the course of the day, a couple of days, or a week, and then you can revisit those pain diaries. And try to get people to not only nominate their physical pain symptoms, but also, if you can, educate them to start to understand how to document their non-physical pain symptoms as well. And if we're introducing that concept of total pain for them, then we can get them to possibly document that a bit more. So individualise their treatment. Try and then obtain some MDT input. So try and get physios and OTs and Allied Health people involved because these guys can be really helpful in terms of using strategies to assist with all sorts of things, especially maintaining function, which can be a very big contributor to their pain. And then obviously increased collaboration at end of life care in order to make sure that you're optimising as many things as possible.
So back to JM on the next slide. He was placed on continuous subcutaneous infusion pump of hydromorphone – so we swapped that from oral hydromorphone tablets to some sub-cut hydromorphone, as well as tried to add in some methadone to get better control of his pain. We added a neuropathic agent – as you can see we're adding lots of things in here and nothing seemed to be particularly working – and I think this is a really complex pain issue, but I'm highlighting it because it's not uncommon and people do have a whole lot of increasing need for opiates and seemingly they're not always as effective as we'd like them to be. So we added some benzos as well to his subcutaneous infusion pump and then tried to also add those in as required to try and address some of his anxiety issues. But I think what was happening for him, and what can be probably described on the on the next slide, is that his total pain was really in this setting of a terminal diagnosis.
I came across this recently and it was a term coined by Nessa Coyle in 2004 who was a nurse practitioner or who is a nurse practitioner, and she described this as the existential slap. It's that moment when you comprehend on a gut level or on a visceral level that death is actually happening. And I think that moment happens really as like an inflection point and that moment kind of marks this point at which people really start to re-evaluate how things are going for them and whether or not they are in some kind of personal crisis (and often it does precipitate a personal crisis), but what it also highlights for them is that death is going to happen and that can no longer be denied. So it’s almost like this thing that wakes you up and says, “Okay, well, this is really happening to me”. And then what that does is sometimes it causes a crisis that's more difficult to overcome than some of the physical illness because it causes social, emotional, and spiritual trauma. So how do you overcome that? I guess there's no easy way to overcome that, but we're always trying to look at ways of moving patients from a concept of denial towards more of an acceptance of their illness. And they're not destinations. So acceptance is obviously the acceptance kind of spectrum, as I like to refer to it as. And people fluctuate between the two. You don't live in one state and then not necessarily kind of go back to different states. So you can be between denial and acceptance simultaneously almost, and that continuous kind of fluctuation is quite normal and I think what we’re trying to do is just get people to be more aware of dying but also staying as engaged in life as possible. Because what we don't want them to do is get to some kind of despair and hopelessness where you might have heard people talk about the fact that ‘Why is it worth living?’ and ‘What is this about?’ And so when people do, I guess, gravitate towards that, what we're really talking about is the construct of suffering.
And so on the next slide, Friedrich Nietzsche’s famous quote was that to live is to suffer and to survive is to find some meaning in that suffering. So I guess, as a way to potentially look at how to overcome some of this non-physical pain, what we're trying to do is to get a better understanding of the suffering that people are experiencing. And in particular for our patient JM, I guess look at what the suffering he endured and trying to find some meaning in amongst that, and trying to understand his form of suffering. Because I think we all make assumptions about the fact that we understand suffering because we have a personal attachment or we have a personal definition of suffering, and that's great because everyone suffers, and if you look at the next slide, Viktor Frankl in his book Man's Search for Meaning, very eloquently said “If there is meaning in life at all, then there must be meaning in suffering and without suffering and death human life cannot be complete.” So everyone suffers is the deal, it's just unfortunately, how do we precipitate or facilitate the finding and meaning in amongst that
So in 1982, Eric Cassell wrote a paper called The Nature of Suffering and the Goals of Healing, and what Eric Cassell did I think which was very, very pivotal at the time, was he talked about the obligation of doctors to not just relieve suffering in medicine, but he also argued that we should be able to spend equal amounts of time addressing non-physical suffering. I guess what he's saying is effectively we're quite good at trying to relieve nausea, we're good at relieving pain in those cases, we're good at relieving all those physical symptoms, but we spend very little time (often) trying to address the non-physical suffering. And I think that's where his paper was really helpful, and also a really nice reminder of one of the, you know, the difficulties with suffering. And he actually talked about the Paradox of Suffering as well. And this is pretty pertinent for our patient JM, because Cassell talked about this idea that even in the best settings and with the best physicians and the best form of treatment, it's not uncommon for suffering to occur, not only during the course of the disease but also as a result of its treatment. And particularly for this patient, JM, he was a patient who had some immunotherapy as I've said earlier and in that he had a very bad reaction to that immunotherapy treatment and he actually stated that that was some of the worst time of his life, and, interestingly, we're thinking well, this is his only chance – we have to give him immunotherapy therapy treatment. And I'm not saying that immunotherapy treatment is a bad idea because as most people probably know it's been an absolute game changer, especially in metastatic melanoma and it's probably one of the most important treatment modalities in the last 10-15 years. And so immunotherapy has been fantastic, specifically for metastatic melanoma, but this patient didn't get a very good response, and in fact probably had what we're now referring to as a rapid acceleration of his disease, which happens in a small percentage of patients as well. And so, unfortunately for him, he had a whole lot of side effects of that treatment and actually felt like the treatment was making him sicker than not having the treatment. Now that doesn't happen all the time, but when it does happen, it's quite distressing because we're trying to actually fix something and we're potentially making that worse.
So in Casell’s paper, he has really kind of three main points to make, and the first is that suffering is experienced by all persons. And the second thing is that suffering occurs when an impending destruction of the person is perceived and it continues until this threat of disintegration has passed or until the integrity of that person can be restored in some other manner. So what he's talking about here really speaks to the stuff that we were talking about at the start, which is that the disintegration of that part of that person needs to be restored in order for them to be intact or to maintain their entire personhood or that whole person aspect of themselves. And then the last thing is that suffering can occur in relation to any aspect of the person, whether it is in the realm of their social role, their group identification, their relationship to themselves, their body, their family, or in relation to any kind of transpersonal transcendent source of meaning.
So suffering is not just relative to the physical, but also relative to cultural as well as social roles. And I think that's really important to keep in mind as well, because in medicine – and this is really kind of what Cassell also spoke a fair bit about – that medicine is traditionally concerned with trying to treat the body and physical disease and then we do that but unfortunately the disease is not separate to the person who suffers with that disease. And then unfortunately patients themselves and their friends and family don't really make any distinction between the physical and the non-physical sources of that suffering in the same way that doctors do. So, in a sense, what we do is we compartmentalise that. And we say, Okay, well I fixed this stuff, obviously, you've got a list of things that you feel like you're suffering with it the moment. And so, for instance, with our patient JM there was a whole lot of things that potentially were sources of his suffering, but would anyone like to offer some suggestions as to what they think his possible sources of suffering were – I'll give you a couple of moments to write some answers. We’ve had a pretty minimal response so far in terms of questions, but hopefully people are still awake.
Chantelle: You can type answers into the question log.
Dr Arron Veltre: Excellent. I’ve got some great responses. Thank you. Perfect. So, “He aches over the lack of relationship with his children” – yes, I'd agree with that. “Lack of psychosocial support” – yes, I'd also agree with that, yeah, absolutely. “Isolation from others” – yes, definitely. “Missed opportunities” – yeah, I think he did probably have a fair bit of a missed opportunity given his kind of incarceration. “Problems with family relations, reconnection with family” – yep (and thank you for writing that you’re from Magnetic Island – very nice to hear from you). “Lack of family support” – absolutely. “Regret over his life”, “The stigma of his incarceration history” – absolutely. “Guilt of using substances”, “The aches of thinking you found God, but God is letting him suffer” – wow, yeah, that's pretty interesting too. “Worried about death”, “Lack of work-related satisfaction”, “Hopelessness”, “Fear of unknown”. Well, you guys are great. Fantastic. Yep, all of that. “Anger at late diagnosis” – I think that's a definite issue. “Why is this happening to me?” – that’s a really common thing. “He's probably got very limited coping mechanisms” – I'd agree as well. Yeah. Fantastic. Thank you for all of those.
So I guess we can also then see that extrapolating from that (with that whole list, and you guys had a very extensive list), so I think, based on that, that's very much likely to have an impact on his end of life care. Because if we're only really addressing his physical pain and we're not really kind of being able to have a huge impact on all those other things (because it's pretty hard to fix 20 years of disconnection, it's pretty hard to kind of, you know, fix any of that stuff about whether or not he was late in his diagnosis, the stigma of his incarceration, his regrets all, of that stuff). But, what can we do? I guess what we can do is ask them questions and what we can do is try and get an insight into what his meaning is – because it's kind of, in a way, it's also one of those things that we assume that this the personhood stuff for him. But I guess it's really interesting, and especially teaching medical students, I'm constantly reminded that in medicine we teach people too often give answers to stuff without really asking questions as much as we should and listening for answers (and I think that's something that I always try to remind myself through teaching medical students). So I think the pathway for this is to really try and get an insight into his form of meaning and how to understand how his spirituality can impact his dying process.
Dying can precipitate a really contemplative and reflective state. People often are reflecting on the meaning of their life, they're reflecting on the purpose of their life (or the lack thereof in terms of their suffering), they’re often reflecting on the values and connections that are important to them (which I think most of you already kind of alluded to in your answers, which was really good), and then also I think in the case of JM, he's also reflecting (or he was reflecting) on some of those disconnections. And the sources of some of those disconnections can be described as a form of existential distress.
So lots of terminology in pal care – we like words and we like to bring up all these wonderful phrases and stuff, but I think existential distress is probably one of those terms that is overly complicated and doesn't need to be necessarily. It really just means that there is some form of kind of disconnection and that has an impact. And so I think what this Viktor Frankl quote was talking about is really trying to not pathologize that. So, “A man's concern, even his despair, over the worthwhileness of a life is an existential distress, but by no means a mental disease.” So it normalises in the context of end-of-life care and I think this is something that we should also keep in mind – that people will have these things and that's not necessarily a problem that's unexpected. Yeah sure it can cause a whole lot of distress for them and we should look at trying to address that, but by no means is that a pathology.
I was hunting around on the web to try and find images that described existential distress and I stole this image from the New York Times (so apologies to them for that), but I think it's a really good way to have a look at it. One of the things I guess about this image for me that really resonated was this idea that bits of this person's life is really kind of in pieces and spread around outside on the floor, and they look very kind of concerned and almost a shadow figure, but you can see images of people and possible families and possible kind of mess, like a Christian kind of cross sitting up there somewhere – and I think what this really kind of highlights for me is that often when we're asking people at end of life to start thinking about some of the things that give them meaning, often what we do is we ask in a way to go into their cupboard, we ask them to pull out all the things that are in their cupboard, and they lay them all out on the floor or on the table. And sometimes we don't really stay long enough to give them a chance to clean up that mess afterwards. And I think this is what end of life care can precipitate for people, and that is one big great kind of mess of stuff on the floor that they're kind of sitting in and sitting with, trying to contemplate and make sense of.
So, I guess, when we're talking about spirituality (because that's what we're really kind of talking about in the in the background here), it's a highly subjective term and it's also really, really distorted with links to religion. And what I'd like to do today is to try and maybe separate that understanding for some people. Yes, it encompasses some faith, but that's only really one component or a component of understanding spirituality. I think the more that we can talk about this comfortably without trying to necessarily define it in terms of a particular faith it is much easier. I think there's a whole lot of literature about this, and look this is a separate talk in itself, but what I would say is if you are interested at all, there are some amazing papers around and one of them, one of the really interesting ones, is by Christina Puchalski who talks about the dimensions of spirituality. And, in particular, I think that's an article worth looking at.
So where do we get this word ‘spirituality’ from anyway? The origins of the word – it’s actually a Latin word (no surprises there). Apparently, it means breath or breathing. And the idea was that in Hebrew there's this word called ‘Rhoah’ which is considered the Breath of God and in the Book of Genesis God blew into the nose of a human and then that brought about life because of this Rhuah, which was the kind of breath of life. And so, in a sense, spirituality has this non-tangible kind of inference, and unfortunately, sometimes I think what happens is that when we say spirituality people freak out and think “Oh my God, this is getting way, way too much and all too complicated and we really shouldn't be talking about this stuff.” But I liked the Christina Puchalski article in particular because that really broke it down to the kind of five dimensions of spirituality. And her dimensions are really easy to follow and they’re much more tangible than some kind of really weird out-there theory.
So she talked about the fact that dimensions of spirituality can be Relational – that is connection to other people and other things. That there was this Essence component – as in the core of one's being. That there is a Meaning component – as in the meaning of your life or your purpose. That there was also this Awareness of a higher power – and I kind of put all the faith and religious stuff in that one. And then the Values and Beliefs and Morals. And so I think that the most useful construct out of that, especially when you're trying to talk to a patient population who may not have the best kind of level of education and may not have the best understanding of health literacy, I think one of the best ways to try and capture this from a patient population is to look at the relational connection component.
And so in the relational connection component, what she describes in that paper is talking about how spirituality is the construct of the relational connections to these four main components – and that is your connection to yourself, connection to others (or family and friends), connection to nature (that is whether you kind of get a connection going for a walk at the water or going in the mountains – whatever that connection to nature is for you), and then your connection to a higher power. So based on those, the argument could be that ‘All right, well, so each of those is 25%, so I could potentially spend 25% of each of those every day.’ But actually that's not what happens, so obviously it's not necessarily a percentage thing – it's more about saying ‘Well how much time would you really allocate to each of these things every day in terms of connecting with your spirituality?’ So, for me, I'm pretty self-absorbed – so I'm going to spend a fair bit of time trying to connect with myself. I connect with others in terms of family and friends a fair bit as well. So that probably takes up about forty to fifty percent of my time. We live by the water, so I'm fortunate enough to get to connect with nature on a regular basis, and I probably spend less than 5% of the time connecting with some kind of higher power. So as you can see it's not necessarily just prescriptive in that sense, it's also going to change on a day-to-day basis.
And when we're trying to adapt this model to our patient population, I think it's really important to redefine what we see as a relational understanding, especially in terms of general practice because you guys have a very, very good knowledge of your patients – you have a knowledge by acquaintance, because you get to see them regularly, and then you also have very good knowledge by description, because you have a whole list of descriptions in terms of their symptoms and their past history. And so you have all this really, really great grounding for relational understanding, but unfortunately that can change very, very quickly at end of life. And because this context, we're talking about end of life care, what we need to do is revisit that kind of relational understanding for patients that are contemplating their own death and are kind of looking at their end of life care.
So what I’m going to get you to do now is maybe get a piece of paper if you can (a blank piece of paper) and you can just simply take a moment to contemplate your own connections. So you can simply draw a cross on a piece of paper and at the top of that cross, or let's say the north-facing cross, then you can put Yourself, and then if you go around that clockwise, the next point of that cross will be Others, the bottom-most cross will be Nature, and then the last one will be Higher Power. And so as you label the four points of that cross, start to think about listing the things that you do, whether that's activities that you do or whether that's names of people that you connect with, or whether that's connections about places. But if you can start to think about some of those things that can be a really useful way to try and get a sense of how much of the time you spend connecting with these different aspects of your spirituality. And what we're trying to do here is get a way to make this more accessible for patients. Because, again, I was teaching some medical students a couple of weeks ago and how do you get them to ask questions about spirituality when they're not really sure necessarily about how they contemplate it for themselves? So it's all very good to have a nice way to make sure that people address these things, but unfortunately as a practical application it can often get a little bit lost. And I think the default option for a lot of medical students, and myself for a long time, was to say, ‘Okay, do you have any particular religious beliefs?” And then that was it – so we were done because as soon as someone said they have a religious belief – yep, great, tick, that's done – and if they say they don't then you're like, all right, cool, let's move on because I don't know what else to say now. So I know that I'm not speaking to a bunch of medical students and I know I'm not saying that it's the same audience, but what I am saying is that it's very helpful to have a simple construct that is applicable to a wide variety of patient populations and that way in particular you can get a better sense or understanding.
So back to JM. I'm going to ask for audience participation here as well (just to check in that we're still awake). What do you think were his sources of connection or which sources of connection do you think that he would try and utilise? And consider the possible sources of his disconnection. So we've kind of talked about some of the things that, you know, we think could have been sources of his non-physical suffering, and there's going to be some overlap. And maybe some kind of comments around who we can enlist to address some of this disconnection and distress – so ideas from the floor would be great.
Okay, “We need to enlist the pastor” – very good idea. Yep. So lots of people have said the pastor – fantastic. I agree. Absolutely. I think that's a possibility and I think, you know, in this case with JM we definitely did get the help of the pastor and, unfortunately, he didn't really have any other friends, other than the pastor, that we could kind of ascertain. “He had recent connection with Christianity, living close to the pastor.” Yes, agreed. Someone else was offered “Friends from incarceration” – yep, I think that's a good idea because often people who spent many, many years in incarceration or in correctional facilities will develop friendships. So yeah, we can consider his source of connection as “religion” and possibly some of the disconnections as “his substance use.”
A really good question – “Is it worth connecting with family or risk of leaving him feeling worse?” And I think this is really quite the dichotomy in palliative care. For me, both on a personal and a professional level, I think it's really difficult to say, ‘Okay, well if there has been a significant source of family distress, is this a time in which this person would like to nominate to reconnect with that family member, or is it kind of going to cause more distress?’ And I think this is a really, really difficult grey area, and there are a lot of grey areas in palliative care, and I think that's one of the reasons I'm attracted to it. I think it's always a very difficult thing to contemplate, but I think what we need to do is make sure that we're giving JM (or whichever patient that you're seeing) the opportunity to try and understand which is going to be the biggest form of harm. And I often enlist the help of an ethicist there – they're not always available, but I have spoken to an ethicist in Queensland on a regular basis about some of my more challenging patients. And the thing I love about ethics is that ethics can really kind of cut through all the noise and filter through to the really important stuff. And I think, in an ethical framework, what we're trying to really do here is establish, ‘Is this going to cause him more harm or is this going to cause him more benefit?’ And I think that's the kind of way to approach that – but yes, very good question and very good comments.
Yes, we could get “Case Management”. And yes “Community support workers” are also a good idea. Yep, absolutely the “Treating team” and the “GP and the palliative care teams – Get the treating GP to talk to the palliative care team” – absolutely. I agree with that. I think having the background from a GP can be invaluable in these situations. Other suggestions are “Consider whether he may wish to attempt a reconciliation with his family.” Well, yes, absolutely – I think we covered that a little as well. “Enlist the psychologist to explore this further” – absolutely. So I think a psychologist can be really helpful – again not always available at every kind of facility, but I think a psychologist would be a very, very valuable contribution (to especially JM – we did try and do that but unfortunately he deteriorated more quickly than we anticipated). And I agree with your comment Michelle, that social workers are very helpful. They are – in fact, most of the time, the work of trying to understand the connections, including important things like their documentation, is done by a social worker, and they are amazing. And yes, the earlier you can get a social worker involved in this, is very, very helpful.
So in the case of JM, we weren't really able to get him to reconnect with any of his family members in the time frames that we kind of allocated. He had a capacity assessment and was able to give his enduring guardian or enduring power of attorney to his pastor friend. So that was good and I think that was a very helpful thing to ensure that his needs and his end of life care wishes were adhered to – so I think that was the most logical conclusion for that, I think that works quite well. I think, unfortunately, often we run out of time and that's not because we're not trying to do all these things, but often patients have complicated disease and that complicated disease (as we all know) can really do things of its own kind of volition and we don't really get a chance to halt or to stop that from happening necessarily in the time frames that we like.
And so, I think, if we can get to possibly just addressing four really, really simple things – I'd like to leave this with you because I think in the end every person at their end of life has four things that they really need to get out. And that is: Please forgive me; I forgive you; Thank you; and I love you. And if and if you can get a person to the point at which they get to express these things, maybe not always verbally, maybe written, depending on the person, I think you're doing pretty well in terms of trying to at least get this important stuff out.
So unfortunately for JM, it doesn't always end on a great note, and in his case, his death was a lot quicker as I said than we thought – he deteriorated very rapidly. His distress was quite significant and he required I guess the really high-end palliative care medications and he required in the end terminal sedation. And that was because of a mixture of things in terms of his lack of response to medications, and which we kept escalating, and you know, we could debate the kind of pros and cons of terminal sedation for another day perhaps, but I think the point of this this case was to say that the complex life situations often result in complex end of life situations. And so keep that in mind because as General Practitioners you guys have the best snapshot of the complexity of people's lives and therefore you're probably able to start anticipating and predicting some of the ways in which the complexity of their end of life care is going to play out.
So, in summary, I think the take-home points for today would be that total pain is a really, really useful construct developed by Dame's Cicely Saunders who's often referred to as the founder of the hospice movement in palliative care, and it's the sum of both the physical and the non-physical symptoms. So please ask about it, please try and get patients to document it, and please try and think of ways to address that. And then the second take-home point is that suffering manifests in both a physical and a non-physical form. So yes, it's pain, but then also the suffering is both a physical and a non-physical form as well. And then last, but not least, spirituality is something that is very, very describable and very useful to think about in a relational connection setting and I think it's a really valuable way, at least for me in my job, to try and get people to be a bit more comfortable about describing what they value and what they connect with and how those connections play out and also to try and elicit possible sources of disconnection.
So thank you for your attention. I might give you some opportunity to ask some questions or if you have comments please feel free to type them in, and please if I missed any questions or comments from earlier, I'm happy to address those – but I'm just looking through the list and there wasn't really any questions I don't think that I that I didn't see or I didn't speak about.
So does anyone have anything they'd like to comment about this case of JM? Have people had similar experiences? Is this like a case that is similar? Or have people found that they've had a really difficult time trying to control non-physical and physical suffering?
So, a comment from Hannah – “Simply asking people what is important to them is a great way to start exploring spirituality.” Absolutely. I think you're right. And I think that's probably the best leading question – as in how do you get to that stuff about what is important – yeah, absolutely, please ask them what gives them meaning, what's valuable to them. All of those are very, very useful.
Question from Catherine – “How much do you involve ministers or rabbis?” Well, absolutely, I think they're always valuable to get involved and I think that it really depends. I guess there's two parts of that question. Chaplains are often a service that a public hospital will have access to and then in terms of accessing people's particular faith in terms of a particular Catholic minister, or a priest, or a rabbi, usually that would be on the basis of a patient request or a family requests. And in terms of how much do we involve them, very commonly people are requesting that and we will involve them.
“Which ethics contact do you recommend?” Well, look, I don't want to necessarily say that you can you can contact Sarah but I speak to Sarah sometimes on Twitter. Sarah Winch is her name. She's actually written a book which I’ve got a copy of here – it's called The Best Death. She's on Twitter if you have a look at her it’s ‘WINCH’, Sarah Winch, and I think that you can definitely try and speak to her through Twitter – she's pretty responsive to that. But yeah, I think that ethics is a really, really interesting area and I think the more you can explore this at end of life, the better.
Question from Ali or comment – “Sorry, what was it about forgiving?” I'm not really sure, Ali, perhaps you can clarify your question for me. I'm not really sure what you meant by that.
And Jeffrey has said that “It reminds me of a similar man who's living on the edge of morbid illness. He has no insight that death is nearby.” And, I guess, yeah, that's a really common thing Jeff, and I guess it's about that kind of point at which people kind of get that existential slap almost, or that point at which they hit that inflection point of understanding that it's going to happen.
Ali's question was the last slide. And the last slide was beginning… Yeah, so I guess to me, I think there's always this conversation about trying to talk to someone… A lot of people who are dying, in my experience Ali, have an experience where they feel like they're being a burden on the people that love them, and so often even though they may not have done anything wrong (it's not about necessarily saying that they've done something wrong or acknowledging that), it's more about trying to say to them that this is not like what I wanted to happen, and this is not necessarily about my choice and my disease, this is something that happened to me. And the stuff about forgiving someone else, I think, you know, it's really a very powerful construct – it really kind of says that as people we're all flawed and that you're equally contemplating your humanity at your end of life. And I think that's what it speaks to in terms of the forgiveness, if that makes sense.
Thank you Jenny for sharing your story about your father who had a similar experience – you don't think his non-physical pain was addressed adequately, but he was also a stubborn man who was perhaps ashamed of showing and admitting spirituality. Yeah, and look I think that's really very common and I think that people are scared of connection and vulnerability and death is probably the most vulnerable space you can be, and so, yeah, it's very, very difficult.
Question from Georgina – “How do you use the language of dying and death with people versus passing/deteriorating in ways to support or address the existential slap?” Really good question Georgina. I think, just quickly, Kathryn Mannix is a UK palliative care specialist who also wrote a book called With the End in Mind and I think that she summarises it best by saying, “It is death. Please use the language. Please don't use euphemisms. Please talk about death and use the words, because I think the more we can do that the more we can normalise the process and the more people can get comfortable with that.”
I think we're about to cut off with time, but once again, I'd really like to thank everyone for participating and I hope this was of some value and I very much would like to hear some feedback about what you'd like to hear for the next one. So, thank you.
Chantelle: Great. Well, thank you Arron. And RACGP Rural would again like to thank our sponsor Ochre Health and Recruitment. And, finally, just a thank you to all of our attendees for joining us this evening. Also, just a reminder to complete the evaluation form that will pop up in a new window in just a moment once the webinar session closes – it will take no more than a minute to complete. And finally your certificate of attendance will become available in your CPD statements within the next few days, but for any non-RAGCP members who would like a certificate of attendance, please email email@example.com.
Thank you again and good night.