Talking Palliative Care: Normalising the conversation

Colm Cunningham: 0:12

Hello to you and welcome back to The Dementia Podcast. I'm your host, Colm Cunningham. And our episode today is focusing on palliative care and dementia. It's so important that we have this conversation because dementia is a second leading cause of death, for example, here in Australia, and the leading cause of death for women. A survey by Palliative Care Australia in 2017 showed that people believe it's really important to have those conversations with family and friends about of end of life care. And so you'll hear in our conversation today about many of the important issues we need to be talking about as we consider and support the palliative and end of life needs of people with dementia. We're delighted to be joined on the panel today by Helen Reeves, head of special services at St. Giles Hospice. Now she is joining us in her busy day over there in the UK, so you may hear some noise in the background. It's great to have you with us. And secondly from New Zealand is Professor Rod McLeod. He works for Hospice New Zealand, but has had many roles over the years, including working for the Dementia Centre at home and care. It's great to have you both with us. Now with our international guests, you will hear them talk about hospices. And it's important to recognize in the UK and in New Zealand, that's a familiar term here in Australia, a hospices are equivalent to those specialist palliative care services that will be more familiar language to people listening in Australia. Thank you both Rod and Helen for joining us, particularly because here in Australia, it's palliative care week. So an important conversation to be having. Rod, what is palliative care?

Rod McLeod: 1:55

Well, the formal definition is that it's an approach that improves the quality of life of patients and their families who are facing issues related to a life threatening illness. So it's simply providing compassionate care to people who have an illness, which is not going to go away.

Colm Cunningham: 2:18

And is the concept of palliative care different to end of life care, because that's one of the things that often gets confusing.

Rod McLeod: 2:24

Well, I think when palliative care started over 50 years ago, in Britain, it was called terminal care. And there was a confusion then because it really was involved with just the last few weeks or days of life. But as we've learned more about these sort of illnesses, we recognize that that this sort of care, this sort of approach can be very effective, quite a long way out from the end of life. So palliative care encompasses end of life care, but it generally starts Far, far sooner than the last days or weeks of life, or it should do.

Colm Cunningham: 3:06

Helen, it was actually the hospice you Kay's report on palliative care for people with dementia that led me to know St. Giles hospice, and I know that you've been doing work to support people with dementia, when they're palliative is it different from supporting other people with, you know, without dementia?

Helen Reeves: 3:25

It's different in the fact I think that a lot of the time they're diagnosed, they're not informed. It's a palliative diagnosis, and that can become a shock later on. As part of the work we've been doing with St. Giles and Walsall is trying to get people accustomed to the fact that dementia is a palliative diagnosis and how they can help prepare for that, and what the monitor, you know, what they might be wanting to expect.

Colm Cunningham: 3:49

And I guess that is one of the things that we know, because dementia can be a long condition that that tipping point to that last six or so months can sometimes be a real surprise to families and that is that something that you find in St Giles?

Helen Reeves: 4:07

Yeah, absolutely. What we find and work with the care homes is that element of surprise, sort of trying to get care homes used to is if someone's being admitted to hospital if they had exacerbations of infections there are cues they can look out for that might indicate that they're progressing through their disease, and then it just gives them some nice tips to help prepare both the home and the families of what to expect going forward.

Colm Cunningham: 4:31

Rod, is there ways that we need to think about diagnosing dying and a person with dementia?

Rod McLeod: 4:38

Well, yes there are. But I think the other thing that clinicians, the doctors and nurses mainly have to think about is would I be surprised if this person died within a year? I mean that that is a fairly blunt question. But if the answer to that is no, I wouldn't be surprised then we should be involved. Palliative care is a supportive mechanism. Now diagnosing dying is, I was gonna say is more of an art than a science. I mean, there are some scientific ways of looking at that. But you just get the sense that the life is coming to an end, when when you begin to see evidence of repeated infections, you begin to see, perhaps more confusions more agitation. And people may begin to exhibit some other symptoms like pain or breathlessness, which indicate that their systems are slowing down. So I think it behooves the clinicians to look very carefully and one of the aspects of palliative care is that you have to have impeccable assessments. And so impeccably assessing time and time and time again, not just wafting in and wafting out and saying, oh, you're getting on fine. I think it's it's looking for those cues that Helen was talking about, and acting on them.

Colm Cunningham: 6:10

I think it's quite powerful. What you said at the start, which is the idea of me asking somebody that question about would you be surprised if this person died in the next year? is one if you feel like drawing in breath before you actually say it? Because it obviously creates a whole other cascade of things that then need to happen? Do you think that's one of the reasons why perhaps it doesn't get asked?

Rod McLeod: 6:35

Yes, I think I remember when I was doing my PhD. 20 years ago, I asked, I asked hospice patients, what was different between me as a palliative care doctor, and the doctors that they met in hospital? And the commonest response to that was, well, you're not afraid. And I think what happens is that palliative care staff, people who are involved with caring for people with dementia, aren't afraid to ask those questions. Generally speaking, the fear of asking the question is that you're going to unleash some sort of uncontrollable emotion. But of course, that's very rarely the case. So I think you do need to draw the deep breath and be prepared for what people might say. But but it bears fruit every time.

Colm Cunningham: 7:25

Helen, in terms of people being prepared, one of the things I was reading in the literature is that staff often fly get that they don't feel well trained, and well supported. And that's another reason why it often can sometimes not be well planned. Does that seem familiar? And does that ring a bell about why we need to start talking about this, not just from a point of view of hospices, but how we support residential facilities?

Helen Reeves: 7:53

Yeah, I think it's about normalizing it. So I mean, my own experience, I'm an ex district nurse, and, and the death and dying pressure assessments was always the one that was put in as not applicable or not today. And it wasn't not applicable for the patient, it was just not applicable for me because it was going to be difficult conversation, I was very lucky during my training to go and spend some time at a local hospice. He said exactly that, it's that it's your own fear. And actually, you're preventing someone from telling them their story. And the best outcome I had was I'm gonna I gave a warning shots. And that was what I was taught to do is say, this may be difficult, and it may not be something you want to engage in with right now. But I'm going to ask the questions about future planning and what your thoughts are. And this lady said, Thank God, you've asked me, I'd love to have white horses and a white carriage when I die to take a funeral and have never heard that. So we were able to do something that and that changed my perspective, then. And that was before I came to hospice care, because I realized it's not about me, and as long as I give a warning shot, that it might be difficult, it's going to be okay.

Colm Cunningham: 8:54

I imagine it's not always easy for people who are professionals who feel they've been trained to have these conversations, do you think it requires an element of bravery? in those conversations?

Helen Reeves: 9:06

I think there is an aspect of brave because what you're doing is you're dipping your toe into the unknown. And a lot of us don't like doing something where you're not sure what the answer is going to be because you're not sure how to respond to that. So you could open a whole can of worms and think, Oh, my gosh, what am I going to do with that information? And actually, it's okay, so I might have all the answers today for all the things that you've raised. But I will either go away and find out or refer you to someone that can help you with the things that you've raised. But that that does come with experience and a touch of bravery. I agree.

Rod McLeod: 9:34

I think that's really important Colm. What Helen's just said, because the idea that you're expected to know the answers to everything is is just not right. And so many of the staff working in residential facilities will not have the answers to everything, but they'll know somebody who does. And even us who've been around for decades doing this work, there are still times When you say, gosh, you know, that's that's a response I haven't expected, you know, because everybody's different, everybody responds in a different way. And some people will be, as Helen said, really relieved, others will be sad, others will, might be angry. But we've trained to deal with all those strong emotions. And if it was, if it was easy, then everybody would be doing it a long time ago.

Colm Cunningham: 10:28

I do agree with you because even the work you're doing Rod with Dementia Centre's team in this very area, it's the the thing people have enjoyed enjoyed or I guess benefited from is perhaps the right word is that you have not come in as the expert you've come in as part of the team helping to explore and talk about the issues. And that does seem to be part of the fundamentals are where we need to start.

Rod McLeod: 10:56

Absolutely right. Yeah. We, when I'm teaching medical students, I always say, you know, you can't do palliative care on your own. There has to be an interdisciplinary team, who know about each other who respect each other whose roles overlap. But you can always ask for help from other members of the team and nobody, nobody kind of looks down on you because you you don't know the answer.

Colm Cunningham: 11:23

It's interesting what you say, Rob, because we know the prevalence of complex needs such as dementia, in aged care, residents have increased fivefold over the last decade. So does that have an impact in the way palliative care specialists are having to address the needs of people providing care for those living with dementia?

Helen Reeves: 11:42

It does, because I think if you take dementia as the primary diagnosis out of it, we care for people with dementia who have cancer. And that's always been okay when you switches, that it's just someone with dementia, for some reason, that seems to frighten us more. And again, I think it says Rod said it's, it's okay not to be the expert in the area, we have a wealth of information and knowledge in supporting people with symptoms, specific to end of life. But also we have colleagues who can help us with the aspects of dimension that we may not be so familiar with, I think if you work together in a blended approach, that we've got that covered

Colm Cunningham: 12:15

Rod, I'm interested in from the work you have done in dimension palliative care, what are some of the stories that have sort of changed your practice when it comes to caring for people with dementia and meeting their palliative needs?

Rod McLeod: 12:31

Well, I think, I think as Helen said, you know, we've been used to dealing with people with cancer, which is more overtly something which is going to end somebody's life. And I think the challenge when looking after people with dementia is that there's an uncertainty at times about whether we're actually reaching the end of the life. I remember having a really quite challenging meeting with a with a man who had Lewy body dementia, and his wife and his daughter who was actually a GP. And I thought that this man would really benefit from some intensive palliative care in an inpatient unit. And when I went back to my colleagues, they said, Don't be ridiculous, you know, we don't have people with dementia in here. And I thought, No, this is absolutely wrong. And we brought the man in, because I, you know, played the heavy card. And and it was one of the most beautiful endings to a life that I can remember. Because the weight of care was taken off his wife, the weight of responsibility was taken off his daughter. And they were able to just sit there and sing to him and read to him and they got involved in the care. But I think recognizing that he was dying, and that they needed more support than they could get without us. What was the trigger? And since that moment, people have thought, Well, actually, we can do this. But you know, when I went over, we're just discussing earlier whether it was four or five years ago to look around to Giles and some other places in Britain, Northern Ireland hospice, and I came back to my colleagues in Sydney and said, Look, you know, this is something that we should be doing, and they just looked at me as if I was mad because they haven't been done before. But now four or five years on, it's part of the norm and both in Australia and New Zealand palliative care services are working more with residential care homes. They're working more with primary care, to provide predominantly education but also to ensure that the people with dementia don't get shortchanged which they have done in the past. You know, it's the second leading cause of death for women in Australia. So, you know what happened to them before?They got left out?

Colm Cunningham: 15:10

Yeah. Helen, was that the experience that St. Giles had when you decided that you were going to change the narrative of what you did?

Helen Reeves: 15:20

Yeah, I think there was some uncomfortableness about does that mean we were changing what the hospice was about? And actually, when when we started to work with care homes and water with dementia, it's absolutely what we do. It's about advanced care planning. It's about upskilling our workforce, it's about collaborating. So it doesn't matter what the diagnosis is, take the mentor athlete that should be with anyone where you've got a skill that you can help share and improve patient's journeys and their relatives. That's actually the right thing to do

Colm Cunningham: 15:44

And so to Rod's point, have you changed the way you deliver because most people with dementia will not die in the hospice, they'll die in residential or nursing home care. So have you adapted your delivery to be more of an outreach?

Helen Reeves: 16:01

Yeah, because I think I have becomes that place a place of residence isn't it. So the worst thing to do is to move someone at the end of life into an unfamiliar setting, which which could exacerbate their symptoms. So what we want to try and do is to provide them with the support in their home with the people around them that they're used to. So I think we've adapted that way.

Colm Cunningham: 16:21

And what about a New Zealand Rod? What would the experience be there?

Rod McLeod: 16:26

Well, I think it's similar. I know in Auckland, we've got a big project. I mean, Auckland is New Zealand's biggest city. And we've got a big project across the whole city where palliative care teams, usually a doctor and a nurse, go into residential facilities and go through all the residents with the staff and say, you know, ask that question, would you be surprised. And they help with the advanced care planning, they help with setting the goals of care. And they help with managing symptoms. They don't, I think the important thing is a lot of palliative care people think that palliative care should be a bit like a hammock, you know, you encoding things, enclose somebody in a nice, warm blanket. Whereas, to my mind, Palliative care is more of a safety net. So we're not having to do all the care. We're not the experts in dementia care. So we won't be doing all the care. You know, there's always this fear that palliative care people have always you know, we're going to be overrun with people, we won't be able to cope, well, you won't be able to cope. If you hang on to everybody and think you're the only ones that can do it. But you certainly will be able to cope if you provide a kind of consultation and advisory service, and work with the people who live with these residents day in and day out and know them far better than we do.

Colm Cunningham: 17:53

Helen, you're nodding your head there. It's obviously a similar experience.

Helen Reeves: 17:57

Yeah, absolutely. You can't be everything to everyone and actually to provide the best care is, as Rod said, it, it's to be that almost an expert friend, and we have expert friends that we would call in as well to help support us. And that's the right thing to do not all patients.

Colm Cunningham: 18:16

And are there things in terms of advice that you would give that is worth calling out here in terms of some of the things you commonly see when you go in to help support a facility?

Rod McLeod: 18:26

Well, I think the first thing I would give advice on is to look for pain, because we know that that uncontrolled pain or unmanaged pain is a is a major issue in the care of people with dementia. And so the staff have got to be trained in in a different way to look for Symptoms And Signs of of pain and manage that appropriately. But you also need to look for evidence of other symptoms, you know, that other organs failing and not just the brain that's failing you know, you get a lot of people with dementia get breathless because they get fluid overloaded. And, as you said, minimizing the medications that are that are being used is really important. Notice that the days of drugging people up because they might be a bit over agitated, I hope, are going away quite fast and looking for different ways of managing agitation or distress. One of the things that I learned very early on when I was going round some of the facilities HammondCare run is the staff are very well aware that there are reasons for people being agitated and they look for those reasons. And so what I learned was that that the the benefit of having staff who know the residents was paramount. Really,

Colm Cunningham: 19:53

Helen Are there any particular tools that's in jowls, use or any processes that you've put in place to Pick up on some of these things that rods talking about?

Helen Reeves: 20:03

So one of the things we do with with the direct support workers in Walsall is they go and do it an observation in a care home. So we don't know the care home. And they will just sit and spend a couple of hours just watching what happens. And I think what they found what the home found really beneficial is having someone external come in, who's not there to judge, but will also pick up on things that you become almost blindsided to, because it's just normal, that's what happens in your place that you work really helps them. And they can just then provide really helpful tips that won't cost money doesn't involve big changes, but maybe improve an ink, you know, a better increase to what they're doing with people.

Colm Cunningham: 20:38

And to both of you are there any limitations and barriers and providing end of life care in a residential setting

Rod McLeod: 20:45

I don't see why they should be it's quite interesting that we we've just an elderly lady that we visit has just had to be admitted into a residential facility. And I was interested to note that they, in that facility, have a program where they that and they call it nobody dies alone. And I think I don't think it's unique to that facility. But they make sure that if people are nearing the end of life, there is always somebody, a volunteer, not a staff member necessarily, who can be there with them. And I think that's really important for families to know that people won't won't die alone. residential facilities, nursing homes, often hugely under resourced in the in the way that staff are involved. But one of the things that, again, we did at HammondCare was to train care workers who could go into residential facilities in the community and provide that extra bit of support in the last resort days. I think having having confident people who can help by just being there is is really important.

Helen Reeves: 22:02

Yeah, I think I'd agree, I think one thing we found work with the care homes is they're actually quite surprised that the research shows that if you're admitted to a nursing home, the life expectancies approximately 18 months, so most of their patients are actually very poorly. And they don't see that. So that they're quite surprised when you start those conversations saying, actually, we should be doing this advanced care planning almost from the off. And that's been a really interesting switch, because we're so used to it in hospice care, I suppose looking looking ahead.

Colm Cunningham: 22:29

Maybe my other question is, what do we need to do to change the narrative and support those staff? I mean, is it a different type of education, that need we need to be providing?

Rod McLeod: 22:40

I think we need to be sure that they understand the principles of palliative care, and they feel confident that they can make assessments and pass things on if they're not sure themselves. But I think above it all is that we have to be sure that we that we care for the staff, because they build strong relationships with these residents, and they will grieve when they die. But if you've been looking after somebody for two or three years, every day of the week, that you're on duty, and they die, then of course, you're going to feel grief. And so having mechanisms to ensure that those staff are supported, one of the things that I spoke to the dementia consultants about was doing an after death audit to know what things went, well, what things could we have improved on? What What were we carry from this person's dying to the next family? And how do we feel about it? You know, how do I feel personally about it, and make sure that people are allowed that the team is confident enough in itself, to to be able to offer support for those people who might be experiencing a more profound loss than the others.

Colm Cunningham: 24:02

And interestingly, that sounds more about culture than about training. It's about giving people permission and making them feel safe, to be able to have those conversations and recognize how they're feeling.

Rod McLeod: 24:15

Yeah, absolutely. And, and that comes from the top down and from the bottom up.

Colm Cunningham: 24:20

Helen what other things would you say is important in terms of how we empower the staff?

Helen Reeves: 24:24

So I my, my biggest bugbear is advanced care planning and that it's been over medicalized. So I think we've created a fear in having these conversations, because it seems that it has to be done by an expert. And actually, as Rob said, it's about normalizing it, you know, unfortunately, at some point in my life, I will die that that's inevitable. And actually, people should know what's important to me today. And so if anything catastrophic happens to me, they can start to put those plans in place that shouldn't have to be that now I've got a palliative diagnosis, it now means that this now all kicks in. So I definitely think it's about normalizing some of these conversations.

Colm Cunningham: 24:59

And on that note I guess I'd love to ask you, Helen first. What would be for those listening both in the UK and other countries? What would be your challenge? I obviously don't want you to be St Giles are busy people. I don't want you being bombarded. But we have a certainly linked some of the great materials that have come from your work. But what would you say to our listeners, it is important to think about going forward.

Helen Reeves: 25:25

I think what we mentioned, I think it's about having those advanced conversations and just normalizing it. It's not something to be scared of. It's not simply frightened of it's a normal part of life and actually, to let your people around, you know, what's important to you. And we'll just make decisions in the future much easier for everyone. What we don't to be left with them. I mean, I did it runs in my parents and said, you know, do you want to be buried or cremated, it's a showstopper, I'll tell you that. knife or fork down. But what I said to them was, I don't want to get it wrong, you know, I want to be left as the eldest of three girls, I know that responsibility will come to me. And I will feel like I've got it wrong. And that's what I don't want to be left with. I want to make sure that I've made those decisions that that will emulate everything about you. And then we have those conversations. Now it's been an easy like, say, a showstopper, but an easy conversation, or is it just normalize that normalize that

Colm Cunningham: 26:16

Rod? What about yourself?

Rod McLeod: 26:18

Well, I would hope that everybody who's listening to this will think about dementia as a terminal illness, we'll talk about dementia as a terminal illness. And will will encourage their colleagues to do the same so that those people who have dementia aren't shortchanged in the sort of care that they get, because historically, they have been the poor relation. And there's absolutely no reason for that to continue, where we're moving on, we're learning all the time. We're pushing boundaries. But I would hate to think that if I or anybody I loved got dementia, that they wouldn't have the advantage of at least having some consultation with a palliative care service. So that they're the team that was caring for them, felt confident that they knew what they were doing. Well, I count myself very lucky that for us at the Dementia Centre at HammondCare, we will continue the relationship with St. Giles, I'm with you Rod, which allows us to continue to push those boundaries. And I want to encourage people who are listening to think about how ultimately that, for me has been about the friendships and relationships have formed and the determination and the brave conversations that have been had through that. So I encourage you to think about who your St Giles and who your Rod's going to be as you go forward and thinking about this very important issue. But for now, Helen and Rod, thank you so much for sharing your time and wisdom.

Helen Reeves: 27:51

Thank you.

Rod McLeod: 27:52

I've really enjoyed it. Thank you very much Colm.

Colm Cunningham: 27:54

Thank you so much, Rod and Helen and thank you for listening to the dementia podcast. It's been so important to have this crucial conversation and to acknowledge that dementia is a terminal illness, and that we need to develop and enhance our palliative support to people and particularly in a week like this in Australia in national palliative care week. We appreciate this conversation is complex. And we've linked a number of resources that we hope you will find useful. Finally, it's important for us to hear your feedback on this and future podcasts. And we really appreciate your ideas and your thoughts. So please do email us with your ideas to hello@dementiacentre.com Thanks for listening and bye for now.