Advance Care Planning: Doing it right

THIS IS part 2 of 2 on the topic of Advance Care Planning, and here we consider:

• The difference that a care plan can make
• What it should include 
• What format that it can take  
• The Universal Care Plan as being an example of this.  

SPECIAL THANKS to our guest speakers: 
Dr Eva Kalmus, Interface Medicine GP Sutton Health and Care @Home Clinical Lead for End of Life Care Sutton
Jodie Grace, Paramedic, London Ambulance Service.
Sarah Fischer, Transformation Manager - Universal Care Plan Programme

USEFUL LINKS: 

Marie Curie:  www.mariecurie.org.uk/professionals/palliative-care-knowledge-zone/proving-good-quality-care/advance-care-planning?msclkid=5fe931bbf6131160d861554f74fb33c1

NHS England:  universal-principles-for-advance-care-planning.pdf (england.nhs.uk)

Universal Care Plan:   https://ucp.onelondon.online/

SEASON 2 is produced by the PCUK Team in partnership with Integrated Care Support Services supporting practices and ICBs with Projects, Training, Resourcing and back-office support. (www.integratedcaresupport.com)

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Chapters

• 0:00 What's a Care Plan?
• 5:58 Care plan vs no plan
• 9:34 The Universal Care Plan explained
• 15:51 Why involving the family can be so important
• 17:51 Final comments
• 19:33 Disclaimer

Transcript

PLEASE NOTE: THIS TRANSCRIPT WAS PARTLY AI-GENERATED AND WILL CONTAIN ERRORS!

e25 Advance Care Planning 2 of 2

[00:00:00] 

[00:00:05] Munir Adam: Welcome back to Primary Care UK. It's Munir Adam here and let's continue season two, brought in collaboration with Integrated Care Support Services. In the last month, we talked about why advance care planning is so important. Well, that's all good and well, but how do you actually go about making a care plan and does it even make any difference?

[00:00:23] Let's find out.

[00:00:24] 

[00:00:39] Munir Adam: So if last time it was about advance care planning and why it's so important, this is more about how to go about doing it, and I suppose that must be really difficult. Is that why there's three of you today, when last time there was just one? 

[00:00:51] Sarah Fischer: Possibly. 

[00:00:53] Munir Adam: Just kidding. Let's start with what might seem like an obvious question, but probably is far from that.

[00:00:58] What is a Care Plan, as in what form does it take, you know, is it a scroll that people will carry around with them? You know, I remember something some years ago about a document that used to be kept in the elderly patient's fridge. I can't remember what that was, but I think that was something similar.

[00:01:13] It's about way of communicating between different health professionals. And I also wanna you, is it a UK thing? You know, these care plans, do other countries do these sorts of things as well? 

[00:01:23] Eva Kalmus: Shall I start? So my name's Dr. Eva Kalmus. I'm a GP with a, an interest in frailty, and I have an interface role between primary and secondary care.

[00:01:33] Questions you ask are really, really valid about what does an advance care actually look like? What is it? And it can take several forms as we're gonna probably discuss in this episode. The overall idea is, saying now what you would want in the future, particularly what you wouldn't want to happen, and having a way of communicating that when you yourself, at that point in time, might not be able to answer questions directly.

[00:01:59] And it may involve really big decisions. It might be slightly more minor ones, but it's about priorities and it's, uh, a guide to the people looking after you: what to do, if. It can be paper, it can be online. And I think there are pros and cons. 

[00:02:14] I think in the past you referred to that message in a bottle. They used to sit in people's fridges. And I think from the time when most medical notes, healthcare notes were paper-based, that had some huge advantages. It was very simple and it was a piece of paper and the person themselves had ownership of that in a sense. Hmm. But times have changed. 

[00:02:34] Munir Adam: Sure. Yeah. But is, is it something that just happens in the uk or do other places have care plans?

[00:02:40] Is it a new thing that UK started or has it been going on for a long time? 

[00:02:44] Eva Kalmus: So in some form or another, it's been going on for many, many years now. The, the message in a bottle is always there. the changes that have come about. Just part of a formalizing things that were understood, I think without documentation in the past.

[00:02:59] So the idea of letting somebody go peacefully, I think was known about many years ago. I don't think that's perhaps acceptable now, partly because we've lost some of the continuity of care when that was perhaps an easier thing to do. But also I think the understanding that these decisions need to actually be formalized in their form and need to be recorded in a readily shareable form.

[00:03:23] Resuscitation decisions go back at least 40, 50 plus years since resuscitation became a sort of identifiable thing, then the idea that it might not be appropriate for people crept in gradually. So it's been around a long time. Is it done elsewhere? Absolutely. I think all healthcare systems are looking at doing the right thing for that person.

[00:03:44] I think the vast majority must be. Whether it's seen in exactly the same light, I think some of this reflects on how we've moved on with palliative care in this country. But certainly in the states they have equivalents. It's definitely around elsewhere as well, but I think we are setting an example in many ways of how to do it. And it's an ongoing development too. 

[00:04:06] Munir Adam: What about the rest of the uk? 

[00:04:08] Eva Kalmus: It very much is happening countrywide. Okay. Um, the form, how to do it is different. Mm-hmm. London has chosen the universal care plan with the intention that ultimately it will deal with other areas than just end of life. And that's being developed now.

[00:04:24] I think in many parts of the country there's the respect paper-based forms, which cover some of the same areas and is replacing the not- for- resuscitation forms, which were around previously that we all would recognize from healthcare. Yes. Because putting resuscitation into a slightly bigger context, which is right, and the guidance tells us we should do that, that discussions on rescuscitation are part of a slightly wider discussion straight away.

[00:04:52] So that's a paper base. There are other electronic palliative care coordination systems as well. Fundamentally, those also have to cover the same issues. Who's making the decision, how it's being made, and how it's recorded and shared. 

[00:05:07] Munir Adam: It certainly makes sense to have this in whichever form, but covering all those key elements. So theoretically, that sounds like a really important thing being done. 

Care plan vs no plan

[00:05:14] Munir Adam: Without meaning to sound too negative, one does wonder, does this end up just being a tick box exercise, or are there examples of where this has really made a difference? 

[00:05:24] Jodie Grace: Hi. Yeah, so my name's Jody. I'm a paramedic with the London Ambulance Service, and yeah, I can really highlight numerous cases where it makes a tremendous difference.

[00:05:33] I can share with you two cases that I've, I've recently attended. 

[00:05:36] Munir Adam: Brilliant. Yeah, I like examples. 

[00:05:38] Jodie Grace: Really. Yeah, I've got plenty of them. So, yeah, this first case I'd like to share with you is this is a situation we often find ourselves in, where patients haven't had any advance care plans put into place at all.

[00:05:49] It was 5:00 PM on a Monday afternoon. A nine nine, nine call came in from a home address to a 77 year old lady who was in cardiac arrest. So I was first to arrive on scene as a solo responder. I was met by the patient's son and husband. The patient was in a hospital bed. Fortunately she wasn't in cardiac arrest at the time, but she was unresponsive, had an irregular respiratory rate, a slow pulse, and my first impression appeared that she was actively dying.

[00:06:13] And she clearly had a really close like supportive family network around her. This is my first encounter with this patient. Mm-hmm. So we have to sort of very quickly glean from information and signs from on scene, to guide us with what's going on. And it's really difficult gaining history because as you would expect, the people on scene are often really emotional, they're frantic, they're confused. We are bombarding them with questions about the patient's past medical history, what's gone on today, what's gone on before, the medications they're on, their allergies. You're placing a lot of pressure on people on scene. And, um, we, we scramble though, we scramble for this information because we will look at anything that's available to us to arrive and reach this relevant information that we need. It's, it's a scramble to get, to get this information together at the time. 

[00:06:59] So we can be very busy making an assessment. We're administering any care and treatment that's required. Yeah, it's frantic! 

[00:07:05] For this lady. She had MS (multiple Sclerosis). Recurrent hospital admissions, and over the last three days, she'd been becoming sort of increasingly less responsive.

[00:07:13] There was no previous advance care plans discussion that had occurred. No D N A C P R in place. So we were making critical clinical decisions based on the information we'd have at hand, which was very limited. I was able to sit with the family and then approach the really difficult and sensitive conversations about what their mom's wishes were.

[00:07:31] Watch two siblings look at one another and not know what to do for the best. We know that they will look back and question if their decisions were the right decisions. 

[00:07:40] Munir Adam: That's clearly an example of how we don't want the system to be. Mm-hmm. I'm assuming that there's a, a more positive example of how things can be delivered better, right?

[00:07:48] Jodie Grace: Yes, most absolutely. So, yeah, the second case in comparison was to an 80 year old female who was having a seizure, and it was a near identical situation. We was met by the son, the lady was in a hospital bed in the living room with family and carers on scene. This lady had a history of advanced dementia, and immediately the family said that there had been plans and discussions had already, though she was under the palliative care team.

[00:08:11] There had been district nurses involvement and discussions had been had with them. And there was a U C P, which really is music to our ears, because we can instantly access this plan via our iPad, all the information I need, including notes, guidance from specialist teams that I wouldn't otherwise have at two o'clock in the morning.

[00:08:29] There is no frantic scramble. There is no pressure on friends or family to recall any information. I literally, I can just read it, and the atmosphere on scene is entirely different. 

[00:08:40] Munir Adam: Yeah. And when you say U C P, you're referring to the Universal Care Plan, which we're now gonna speak about. Thank you for that.

[00:08:45] And it, it sounds like a much more organized way about going about doing the right thing. 

[00:08:48] Jodie Grace: Most definitely. Yeah. 

The Universal Care Plan explained

[00:08:50] Munir Adam: It's great to have the opportunity to learn more about the Universal Care Plan. What is it? 

[00:08:55] Sarah Fischer: Hi, Sarah, here. I am from the Universal Care Plan Program. So the U C P is a digital care planning platform; and it's used to record in individual's personalized care and support information, so what matters to them. 

[00:09:07] And this is also the information that is contained in an advance care plan. So the aim of A U C P, uh, is to create a single central place for a person's wishes and preferences for their care to be documented. And this forms the core of the care plan. 

[00:09:22] Then as the care plan's digital, it's available to be accessed by all the health and social care professionals involved in their care. And as we have the clinical and information governance structures in place to support this sharing of information, the care plan is then accessible by those who care for that person, when it's needed.

[00:09:43] Munir Adam: But how is that, for example, how would I access it in primary care? 

[00:09:47] Sarah Fischer: We embed within a lot of different local electronic patient record systems. So we have a link within EMIS and System one, as well as electronic patient record systems in acute services as well. And we also have a, a standalone portal for those that don't have those electronic patient records available to them.

[00:10:04] Brilliant. And the technology behind the U C P actually gives us the ability to adapt the care plan template to meet the needs of different conditions as well. So we're really creating one overall universal care plan for a person. 

[00:10:16] Munir Adam: Okay. So I don't necessarily need a separate username, password and go into a separate website to access it then?

[00:10:21] Sarah Fischer: No. No. It's all linked to your smart card. 

[00:10:24] Munir Adam: Brilliant. That's great to hear. Um, one less password to try and remember. So I guess the obvious next question is, what sort of information should it hold? 

[00:10:32] Sarah Fischer: The care plan is broken down into different sections, and these sections can be edited based on user's roles.

[00:10:37] So there are clinical sections that clinicians can update. And then there are non-clinical forms, which non-clinical health and social care professionals can also contribute to. So a key feature of the U C P is the urgent care summary page, and that shows the most important information for urgent care services to provide the best personalized care for the patient.

[00:10:57] And this information's built by the information entered into the different sections by the health and social care professionals working with their patient. So things like a person's preferred place of care and preferred of death. Emergency care and treatment plans, so c P R status. Key contact information.

[00:11:13] So personal information such as family or friends, and professional information such as hospice or GP details. There's also places to document advance decisions to refuse treatment and lasting power of attorney for health and welfare. There's management plans for any symptoms, and we have, what's called key alerts So if someone has two large dogs or they're a high intensity user, or they're currently on dialysis, all information available; and the care plan also has a full audit history of who has accessed the care plan, when, and what parts they accessed..

[00:11:44] Munir Adam: Is there a method of keeping this updated, so that it's relevant and useful when the time comes and you need to use it? 

[00:11:49] Eva Kalmus: I think doing advance care planning is very challenging, actually. To keep up to date. But I have to say if it's done well in the first place, it already gives you a guidance to things.

[00:12:00] 'cause you've got space in, for example, the Universal Care Plan to add comments; and you can say at the moment, this is what this person would want. You can actually say that the future might change that. Mm-hmm. You know, there, there's space for some a flavor of the conversation you had because it is about documenting a conversation.

[00:12:17] Okay. It also opens up that conversation in doing it with the family, because this is very important. They need to know that this was discussed. You don't want in that emergency situation for the family suddenly to hear, for the first time that the person had a not- for- resuscitation, for example. Ideally they should have been involved earlier on. And if it's recorded, hopefully that bit was prompted as well because it asks you that question.

[00:12:42] So it provides some real prompts to that. People do change their minds, and I think one always has to be very clear, this is not legally binding. It, it's in the same category as a D N A C P R. It is advisory, right, but you'd need to think carefully about not following the guidance on it and make a professional judgment if you didn't, because it's a, a reflection by a fellow healthcare professional on a conversation that they will have had.

[00:13:09] Munir Adam: You'd have to be quite brave to do that, wouldn't you? To actually go against the wishes that are on the care plan. 

[00:13:14] Eva Kalmus: You would, I think most of the time they're really helpful and I think things can be documented mean. The most important one, for example, I think sometimes is the advance decision to refuse treatment because that is legally binding and it can be recorded there.

[00:13:26] Right. You don't want to ignore one of those, you know that it's there, it, it's a, it's a way of getting all that information Jody was talking about. It's so, so important when you're short of time. So actually it's a time saving opportunity really in many ways really, if it's done. Well.

[00:13:43] Munir Adam: Yeah. You mentioned a few minutes ago about involving the family and others and the carers in reaching decisions about what should be included in the Universal care plan.

[00:13:53] Can they access it? 

[00:13:54] Sarah Fischer: So, at the moment, patient access has not been enabled. However, in the case of the U C P, we will shortly be enabling patient view access to their information through the N H S app. 

[00:14:06] Munir Adam: Okay, fantastic.

[00:14:07] Eva Kalmus: I think that's an incredibly important development that we do have this as part of that accessible record. 

[00:14:15] Munir Adam: I'd like to ask a couple of little bit more tricky questions, and I hope that's okay.

[00:14:18] One is whether there's actual real hard evidence of the benefit of having a care plan. I. And how popular they actually are -the Universal care Plan. How many people have actually made use of this? Generally, who's been doing them? 

[00:14:31] Sarah Fischer: I can. I can come in here. So, of course, aside from, you know, Jody's story that she told us where there was a clear benefit to the person with the U C P and those around them, we've seen from the data that around 30% of people with a U C P die in hospital compared to around 51% is the London average currently. So we definitely see a decrease in, in hospital deaths with people with an advance care plan in place. 

[00:14:54] Munir Adam: Can I interpret that in, in the sense that this is because they wanted to die at home?

[00:14:58] Sarah Fischer: Yes. So they, they document their preferred place of care and preferred place of death in the universal care plan. 

[00:15:04] Munir Adam: Right? Well, yeah. That's convincing. 

Why involving the family can be so important

[00:15:08] Eva Kalmus: I'd like to add something about people using this: involving family and those close to the patient is incredibly important because particularly people with a, a long end of life trajectory such as those with frailty and dementia, it is a very long time that they gradually declining with little ups and downs.

[00:15:28] Munir Adam: Isn't it just, yes. 

[00:15:30] Eva Kalmus: And that's something we see so, so, so often. And we know the figures tell us that the number of people in that situation is going up. And I think having a direction in which that's going and some honesty in the conversations actually helps families a lot. And knowing that there's a record of, of how far you're gonna go with interventions, I think is really helpful for, for a lot of families and carers that they've been involved in that discussion; and there is an appetite for that makes the decision making easier.

[00:15:58] I would back up the statistics that Sarah's mentioned. I think away from London, there've been similar statistics showing that people achieve their preferred place of death, which is the easiest one to measure in a much higher percentage with an advance care plan. And part of the reason for that is probably because having an advance care has precipitated those important conversations, not just with the healthcare providers, but also with the wider family.

[00:16:24] Advance care plan is just the opportunity to start to think about it. 

[00:16:28] Munir Adam: I gotta say that I feel better as a healthcare practitioner if I'm involved and able to have those sort of honest discussions that you referred to a couple of minutes ago, because there's no shortage of patients that get discharged from hospital and they say, well, actually nobody really even said that I'm heading in a certain direction, and I would like to believe that we're doing that better in primary care, but certainly it's something that we as frontline clinicians should be thinking about. 

[00:16:51] Well look, that's really incredible to hear all of this, and it sounds like Universal Care Plan is a really good example of how advance care planning can be done in a way that's shareable and in a way that's positive and covers the kind of things that need to be covered.

Final comments

[00:17:07] Munir Adam: I just wanna ask each of you now to give one take home point for the listeners, Sarah. 

[00:17:13] Sarah Fischer: So I think from the technology side, a digital platform really enables that information sharing quickly and easily, and it gives that single point of truth for a person's personalized care and support wishes. 

[00:17:26] Munir Adam: Jody, what would you say?

[00:17:28] Jodie Grace: I would say that from ambulance clinicians, we attend patients with no prior knowledge. So documenting wishes provides peace of mind for patients and for us as clinicians. And it is vital that these conversations are had, and had early. 

[00:17:40] Eva Kalmus: Thank you and Eva? I think I'd summarize it probably with something along the lines of: just listen. Allow people to tell their story and tell it a few times, but not many, many times and people can change their minds. So just listen. I. 

[00:17:57] Munir Adam: Just listen, thank you very much. I've certainly been listening to all of you. Lots of useful stuff that I've heard as well and I'm sure everybody who's listening will agree with that. You know, guys, for some of us, it's a case of continuing the great stuff we're doing. For others, it may be a case of stop pretending that this doesn't matter or it's not something for us to do. It doesn't matter how busy we are, let's not hide behind that. We've covered already a number of episodes about how to manage time better, but this is an important area that we do need to prioritize. Let's do our bit. Sarah, Jody, Eva. Thank you all for joining and carry on the great stuff you're doing.

[00:18:26] 

[00:18:49] Primary Care UK was developed by Therapeutic Reflections Limited to inform, educate, support, and unite the primary care workforce. Specifically, it is not for the general public or patients. All information and advice contained therein is time, location, and context dependent and general advice only. No guarantees are provided with respect to the accuracy of the content.

[00:19:09] The hosts, contributors, and the organizations they represent. Do not accept liability for any actions, consequences, or effects that result directly or indirectly from content provided. Please refer to the episode description for more information. Thank you for listening.