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e23 Advance Care Planning - 1 of 2

Why Advance Care Planning is so important

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[00:00:06] Munir Adam: Hi guys. If I were to ask you, have you written your will, that might provoke a bit of a reaction, especially if you're still quite young as I was when my financial advisor asked me that question many years ago. But actually it's also because it's a bit of a taboo subject, isn't it? We don't like to talk about death, even if it's the one thing that's certain to happen to all of us.

[00:00:25] The obvious point for asking is that you won't be in a position to express your views when it actually happens. Now your patients are very unlikely to ask you to write their will for them, but what about the health and care they receive while they are still alive, but if they end up in a situation where they're unable to express their preferences? That important for all of us to know about? It's called Advance Care Planning, and we're gonna be covering this over two episodes. 

[00:00:48] It's Munir Adam here, let's continue season two of Primary Care UK, brought in collaboration with Integrated Care Support Services.

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[00:01:09] Munir Adam: I'm now with Dr. Eva Kalmus, who's a GP, but she's into advance care planning. Eva, I'll let you say a bit more about your role in a minute, but tell me why are we discussing this? I mean, don't we already have enough to contend with in primary care? 

[00:01:23] Dr Eva Kalmus: I can sympathize with that one. I. I want to tell you a story first of all about Jane.

[00:01:29] Jane is 90 and most of the last five months she's been in an acute hospital bed, and by the end of this, she was refusing to speak to anyone. She wasn't eating or drinking, and the physiotherapist, very smart physio thought, she was talking to me a few weeks back, why doesn't she even want to acknowledge I'm here?

[00:01:50] She was considered for a fast track application for N H S funded care, and they decided she couldn't contribute to any decisions about what happened next. She had no next of kin. She'd gone in with a serious fall previously, very independent, slow recovery. In that five months, they tried four times to get her out of hospital, and each one had only lasted a few days.

[00:02:10] Each time she came back, she was more frail but still trying desperately to maintain some independence. And they diagnosed things like falls or infection or carer concern. She wasn't eating or drinking very well. Each time 999 was called, she spent many hours in the emergency department. Lots of moves in hospital.

[00:02:28] On this last occasion, meals on Wheels find her at home very breathless. They call 9 9 9 completely understandably, the paramedics arrive. There was no defined advance care plan. She starts that whole cycle again.

[00:02:41] Ah, Jane was asked what would she want, and the only thing she said was not this 

[00:02:46] Munir Adam: Gosh. Well, it's a sad story really, isn't it? But if you don't mind me asking, what's it got to do with primary care? 

[00:02:54] Dr Eva Kalmus: All the people who saw her in hospital, they don't know Jane. They know nothing about her likes, her dislikes. What was motivating her? How she felt about what was happening to her. I know that primary care nowadays, it's really hard to find time to find these things out, but I think in primary care we do know much more about people in a whole context because we see them at home. This woman wanted to get back home.

[00:03:20] Jane really wanted to get home. May not have been realistic, but we might've, you know, knowing her at least had that as a priority, and it might've helped all those people who looked after her over that very long period of time, try and prioritize what they were doing for her, if before that, we'd looked ahead and we planned for the future as far as we can. It's never gonna be perfect, but we could have an attempt at knowing what was important to her. What would she choose between comfort, dignity, and care against all the technologically possible interventions that modern medicine now offers. 

[00:03:58] Munir Adam: I think it's certainly true that we do have an insight into both their medical and social or psychosocial aspects of their life, don't we? Particularly for if we're involved in taking part in home visits and things like that.

[00:04:09] Okay, fair enough. I can see the contribution that primary care could make. So is that something that you are trying to achieve? Is that part of your, your role, because as well as being a GP, you've got a bit more in of an involvement in this, haven't you?

[00:04:20] Dr Eva Kalmus: Yes, very much so. So over a lot of years now, a, alongside being a GP, I've developed an interest in frailty and older people's medicine. And one of the things I was seeing was people who were coming for rehabilitation weren't making progress or people who, as they got older, found themselves with so many different drugs, with loads of conditions, loads of problems on their problem list, and they, it was a, it was a full-time job to attend all the outpatient appointments they were meant to and the nurse clinics and this and that, and everybody was doing the best they could. This is not a criticism. 

[00:04:55] But somehow that whole person seemed to almost get lost in that. So I'm a GP. My title is Interface Medicine GP. I work officially for an acute trust and a community service alongside that. And part of my role is looking at how we can record in some form what matters to them, what matters to this patient or those around them speaking on their behalf, and sharing that information across the great divide between primary and secondary care. So to try and do better, not always get it completely right. 

[00:05:28] Munir Adam: Right. Okay. Taking an interest in it will allow you to get it right more often than perhaps somebody who's not so involved with something like this. And I like the idea of having people who are taking an interest in it. And in fact, it would be good to have somebody from each practice leading on this.

[00:05:40] But having said that, perhaps the rest of us at least need to be aware of it a little bit. 

[00:05:45] Dr Eva Kalmus: I think that's incredibly, incredibly important, what you're talking about there, that we all need some awareness, and it isn't only, obviously the doctors. In the case of Jane, it was actually the physiotherapist who felt that having a a conversation with her that was different from the immediate goals of the medical team might be helpful. And I think for individuals, this makes such a difference feeling they're listened to. Because I think Jane showed that she'd just kind of given up because, and she was actually angry that she wasn't being heard.

[00:06:17] And I think if we look wider than just Jane. Okay. In her case, she didn't have next of kin, although she might have had some some friends or something for her neighbors who might have been interested in what happened to her, but many people have someone who actually, more or less closely is involved in what happens to them.

[00:06:35] And I also speak to huge numbers of very distressed husbands, wives, children of how their role as the person who knows this patient best, feels undermined and they knew when you ask them, what would your mom or dad or brother or sister have wanted, they can often tell you and they can quote to you from previous examples of what's happened. They need a space to do that. And when the patient does die, the bereavement experience of families is very different. 

[00:07:10] The evidence says, with an advance care plan appropriately shared, people have a hugely greater chance of achieving something nearer to what they want at the end of life, but also the bereavement experience for their families can be much better because they feel that what matters to this person was heard and that their efforts, for example, many of them would've been carers for a long time, will also have been respected and appreciated.

[00:07:37] So advance care planning really gives us an opportunity to put the health of this person into the context of who they are as a person. 

[00:07:46] Munir Adam: So that's really important what you're mentioning , that it's not only the individual and that's very important, but also the family and how the impact is on them if there isn't an advance care plan in place.

[00:07:55] But on the other hand, isn't it creating an extra work for the system, isn't it a burden on the system having to organize and arrange these sorts of things? 

[00:08:03] Dr Eva Kalmus: I would disagree with that in the sense that it is work, but it feels very worthwhile because in order to draw up an advance care plan, you have to make some sort of relationship with that individual.

[00:08:15] This is why I think the skills of primary care are ideally suited to drawing up advance care plans because, I think in primary care we're much more used to that equality of relationship between the patient and the doctor or the nurse or or whoever. Mm-hmm. And in that relationship, you have to have some degree of trust.

[00:08:35] If someone's gonna say, when I'm coming to the end of my life, I want you to keep me comfortable, but I don't want you to try and get my heart restarted like resuscitation, for example. That is a huge decision. So firstly, there is the relationship aspect that's needed, but there is another big area of this.

[00:08:53] Think of what that five months that Jane spent in hospital, it wasn't what she wanted. So five months, more or less of acute hospital ambulance transfers. The costs are, they really are eye watering. Ah, and if you look in an acute hospital, I think the figures quoted are 30 to 40% of people will have significant frailty.

[00:09:13] They are one group, for whom advance care planning is incredibly important. We have a, an overlapping group of people with severe dementia. Again, hospitals don't always do them good, and it's hard to understand that, and actually avoiding those inappropriate, unhelpful, and very often detrimental hospital attendance is really gonna save the... To me, it feels almost as though this is the only thing that's gonna save our system from collapse. 

[00:09:39] Munir Adam: Yes. Yeah. Very convincing point there. So not only is it not doing what they actually want or benefit from, but it's all that unnecessary burden on the system.

[00:09:48] Dr Eva Kalmus: We know that healthcare utilization and costs in the last year of life increased with proximity to death. There's lots of data, particularly in the last month of life, that is expenditure that is not benefiting that individual Well, a lot of it, not none of it, but a lot of it will not be. So there is a system perspective that's very important here.

Do clinicians and patients feel ready for it?

[00:10:09] Munir Adam: Okay. In theory, this sounds great. How practical or easy is it? First of all, do people want to plan ahead necessarily and to think about these sorts of things? Do they know what they want. Surely in hospital at least you can have a chance to get C P R and would you want to deprive somebody of getting that opportunity to be resuscitated 

[00:10:28] Dr Eva Kalmus: Loads to say about this? I mean, the one thing is there are no blanket decisions. I'm afraid, and I know this makes it harder to count the benefits, but every time this is an individual personalized conversation. However, the role of the healthcare professional is to make sure that that's an informed conversation. 

[00:10:46] The outcome of resuscitation with frailty. One study showed no one with significant frailty survived to discharge following an in-hospital cardiac arrest. Nevermind a community one where the figures are even worse, right? We know that resuscitation, it's the wrong treatment. It's right for some people of course it is. And I do think we have to be very, very cautious that this is not seen as rationalizing healthcare.

[00:11:13] Anything that will benefit that patient, if that's what they want as well, shouldn't be taken off the list. But we do need to be clear about what they want, or particularly what they don't want. 

[00:11:25] When you ask people, what do you not want? There's a huge list. Loneliness, isolation, loss of dignity and control, dependency, becoming confused, causing distress. Being in pain, lots of investigations which are not helping and, and hopelessness. Now we can, you know, think about all these things that people don't want. We cannot ever guarantee that this won't happen.

[00:11:46] No, of course. But we can try and avoid a few of them. 

[00:11:50] Munir Adam: From the things that you're mentioning, it looks like that at least the patient or the person does often want to be involved in planning ahead and thinking about these sorts of issues. 

[00:11:59] What about the other side of this? People who actually have to have those conversations? I. Do they feel confident healthcare professionals? I'm thinking about, you know GPs and other primary care staff, and do they have the time to discuss this sorts of thing? 

[00:12:12] Dr Eva Kalmus: It, it will be right for some people. There will be people in primary care who will not feel this is what they can do comfortably.

[00:12:19] I. Because it's not a one-off thing. It's very much a process, an ongoing conversation. And luckily our recording systems, which we're gonna talk about more later, allow us to take that conversation in bit so we don't need to get to the end point in one go. And there is some training. There's communication skills.

[00:12:37] As I say, a lot of people in primary care have already worked up to a very good level of ability to communicate and to listen. Most importantly, listen. If you explain to somebody that, that this is the chance to say what's important to them when in the future they're too sick and have lost capacity to be in control of things, I think for a lot of people it's a reassurance. 

[00:12:58] There will be some individuals who are absolutely adamant, they do not want to discuss it, and that is fine. There is no issue with that. There've been trials of doing advance care planning outside of offering any other interventions. And I don't think by and large they've been very successful if you just send someone to do advance care planning.

[00:13:18] But what you can do is offer it as part of a package. So, for example, for people with frailty, the comprehensive geriatric assessment includes a section on advance care planning. It's making the offer to somebody as part of a holistic assessment. I think a lot of our social and voluntary sector colleagues can do some of the first steps of this without concluding the discussion, which does need a healthcare professional to inform.

What if the patient has lost capacity to decide?

[00:13:43] Munir Adam: That all sounds good. But what if you come across a patient like this and they've already lost capacity? What do you do then? 

[00:13:49] Dr Eva Kalmus: So we do what we do in all other decision making situations in healthcare. We try and find out as much as we can about this individual.

[00:13:57] If they've got a lasting power of attorney for health and welfare, that's the obvious place to go to. We will make a best interest decision based on that involving the senior healthcare professional. So obviously in primary care, that's the patient's GP. Very often I found relatives tell me my mom said when she saw my dad so unwell, please don't ever let get like that.

[00:14:21] Now you can't do anything about that. But you can say, well, I think from that at least we can conclude that certain interventions are not what you would've wanted in this situation, and we don't think it's beneficial. So from all points of view that makes sense and we can record that in our advance care planning system. And there is room for that so you can identify that you've been doing this. This is a best interest decision for all the stages along the way. 

[00:14:47] I think we've got the ability though, to make decisions as we always do in healthcare, and we need to hear what the person says as well, even if we've believe they don't have capacity. So if someone is for refusing to take all their tablets as we find very often in general practice, it may be for all sorts of reasons, but one of them might be actually, I'm ready to see what happens when nature moves on. 

[00:15:13] And we know that there are these ways of communicating. People with dementia,- there are individuals out there with amazing skills to interpret what that person's telling you. So again, they may not be the decision maker for an advance care plan. They are contributing to it, and they should. 

[00:15:29] Personalized care is one of the principles from the government down in, in healthcare. And I think that, uh, advance care planning sits as one of the really important elements in this. It's looking ahead, it's hoping for the best, but planning for the worst or for some people the reality.

[00:15:48] Munir Adam: I like the fact that this is now being seen as part of the personalized care approach and also what you said earlier, which is worth repeating about the advance care planning discussion to not necessarily be a standalone activity, but to be part of a holistic approach. Perhaps that's less scarier. I find I, often normalize a lot of tricky discussions in this kind of way.

The Social dimension

[00:16:07] Munir Adam: You remember back in the day, even when somebody say, wanted to have an H I V test, it involved such extensive counseling that a lot of people are scared away from it. And actually, if we say, look, this is the norm, this is what we should all be doing, then uh, perhaps people aren't gonna be you know, it's, you just don't wanna think about those sort of stages in, in your life often.

[00:16:23] Dr Eva Kalmus: Do you, I think you've touched on a really important point actually, which is there's a societal dimension to this beyond what healthcare is offering. Um, we don't want to talk about it, but interestingly, it turns out that a lot of us are thinking about it. Mm-hmm. So perhaps we just need to change a little bit, a tiny bit in the direction of the ability to talk about those later stages of life.

[00:16:48] Because what people think is gonna happen, it turns out, is a long way from what is actually now happening to many people towards the end of life, and I think they need to think about that and then think about what decisions we are able to make. And these are much bigger questions and healthcare on its own can answer.

[00:17:04] Mm-hmm. That's true. 

[00:17:07] Munir Adam: So what actually happened to Jane? 

[00:17:09] Dr Eva Kalmus: Ah, yeah. It's actually a good outcome. I have to, or I felt it was. After the last time when Jane came in, she got to a point of some stability and had a conversation in which she realized she was getting a bit anxious at home and so she decided that, although she'd always said no to a nursing home, she changed her mind and you are always allowed to do that, and there's a reassurance there. So she went to a nursing home this time with an advance care plan , and therefore available. So if they call an ambulance, London Ambulance Service will look at this as can the nursing home staff sometimes, her own GP and the hospital can see, that she wants symptomatic care only. She wants treatment for how she's feeling for pain, distress, shortness of breath, but she doesn't want to go back to hospital and she does not want attempts at resuscitation; or she just wants to be comfortable, and last heard of that's exactly what was happening for her.

[00:18:09] So not a bad outcome. 

[00:18:10] Munir Adam: Hmm. It's very convincing about the importance of having an advance care plan. , I'm convinced, and I'm sure other listeners will be convinced as well, and I suppose the obvious question then is going to be, well, how do you go about making one? And that's what the next episode's gonna be. We're gonna continue our discussion here. Eva, you're doing a great thing. I'm sure that listeners are gonna look forward to the next episode and join our conversation here as well. 

[00:18:33] But guys, that's it for now. Do reflect on the discussions that you've heard as well. And until next time, keep well and keep safe.

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