Factors influencing inclusion on the palliative care register
The interviews and observation of practice team meetings revealed a number of themes critical to patients being included on the palliative care register.
Professionals' approach to identifying patients
Health professionals did not tend to use specific suggested guidance to identify patients eligible for inclusion on the palliative care register in a systematic way; instead they relied on a mixture of intuition, clinical knowledge, and subjective judgement. The most commonly mentioned trigger for identifying the patient for inclusion on the palliative care register was increased input from GPs and district nurses, in response to their deterioration in function and progression:
‘We know who our cancer patients are and we know the ones that we're needing to involve the district nurse so … You know, largely speaking, it's when there's nurse involvement or team involvement that that's sort of palliative care … I think it is very much when there's a team because it's about sharing information and making sure everything's done so it's very much when there's going to be somebody involved other than just me … because then you're wanting the district nurse involved, you're maybe wanting other services and that's when the out-of-hours should know what's happening …’ (GP 4)
Some GPs found the ‘surprise question’ (‘Would you be surprised if this patient were to die in the next 6–12 months ’), in particular, of limited help and over-inclusive, especially if the practice had a large population of older people:14
‘… you can see it happening and you can see people suddenly beginning to not function the way they should have been functioning. When it gets to heart failure … dementia is a real hopeless one, and respiratory failure, I think if you did the “Do you expect this patient to be dead in a year”, we're 100% wrong … All my patients have been on for over a year.’ (GP 2)
Talking about end-of-life care. Some GPs would not add a patient to the palliative care register before they were fully aware of the patient's prognosis, whereas others were comfortable with a less-overt patient understanding. Many did not like to use the word ‘palliative’ with patients and found ways of working around this:
‘… you may not actually say “You are on the palliative care register”, but I do say to my patients, “The whole team is aware of what's going on, so you mustn't be frightened. You know, if there is a day, you know, I don't work and you need help, call, because the doctors and the nurses all know what's going on”. So I may not call it a palliative care register, but they know that the team knows about them.’ (GP 8)
GPs acknowledged that they themselves might be reluctant to talk to patients about their terminal condition. They were concerned about destroying hope, even if they thought the patient probably already knew he or she was dying. It was easier to avoid this conversation for as long as possible, despite the possible consequences of not formally including the patient on the palliative care register:
‘And they were keeping up hope because they felt he needed it, and yet telling people they're dying when they all know they're dying, in one sense, isn't actually destroying hope, it's actually the professionals preserving themselves as well … It's easier to keep on jollying people along sometimes than actually to sit down and have that very uncomfortable experience or even one conversation saying, “That's it, there's no point”.’ (GP 2)
Clarity on the benefits of including a patient on the palliative care register
GPs expressed uncertainty regarding the benefits to patients of being included on the palliative care register. They felt it did not change clinical care but did acknowledge that there were improvements in supportive aspects of care, especially with regard to information sharing and access to services. For example, patients would be discussed at the multidisciplinary meeting and the whole practice team became aware of their situation; they would have quicker phone access to GPs and district nurses, and a sensitive hearing at reception:
‘I, and I'm sure my partners as well, tell the patients right up front, “Don't worry about appointments, phone anytime, you know, leave a message, we can phone you back; relatives as well”. So we try and take any barriers down that might have been there from before.’ (GP 5)
In Scotland, when patients are included on the palliative care register, an electronic summary is sent to OOH services with the permission of the patient. GPs expressed additional concern that the information sent to OOH services was not being used. In one case, this resulted in an avoidable admission of a patient who died within hours of arrival:
‘I look at local out-of-hours sheets and, even on people for whom we know we sent in [a palliative care summary], they [OOH services] don't seem to have used that information sometimes to do what they want to do. So I'm not entirely convinced that the system works as we think it does …’ (GP 6)
Conversely, GPs who worked for OOH services were very positive about having this information available:
‘I experience it because I still do out of hours … and that's the bit that's really useful is having information about people you went to see on somebody else's palliative care register and having a good chunk of information about them there.’ (GP 1)
In contrast to GPs, district nurses saw more tangible patient benefits of the palliative care register: once included on the register a gateway opened to services such as specialist palliative care, carer support, sitter services, and priority access to other services, such as district nurse OOH services:
‘… [Palliative care] community nursing is one of the kind of gateways to services for patients. It's not always about what we can supply but, quite often, what we know and how we can direct them to get other services. So we are an information system. Also things like equipment that can make life easier in the home, referral onto other agencies like social services, housing, social work, voluntary agencies. It's endless really.’ (District nurse 7)
Patients and relatives also spoke of the personalised care and improved access to the practice when on the palliative care register:
‘… The receptionist got to know us, and I would phone up and say, “Oh it's about Mr X”, and they would always get somebody. And if I phoned again and said, “Look, I'm really, really worried”, you know, you never felt that you were too much trouble, and somebody always came.’ (Relative 2)
Patients who did not have cancer
Particular difficulties were reported in deciding when, and if, a patient who did not have cancer should be included on the palliative care register. Patients with, for instance, heart or respiratory failure might deteriorate markedly only to regain function, for example, after adjustment of medication or treatment of infection, often after admission to hospital; as such, a palliative phase was harder to define.
Similarly, for patients with dementia, who were often in care homes, good physical care had resulted in increased longevity and subsequent difficulty in predicting their death. The care of these patients may effectively be palliative in approach for several years, but GPs were reluctant for patients to be on the palliative care register for such a long time:
‘… it's much more difficult with people who have more unpredictable diseases like COPD [chronic obstructive pulmonary disease] and heart failure and dementia because [for] people with malignant disease it tends to be very intensive when you're actually doing it but it's a short period and, to some extent, that's relatively easy to cope with. But delivering palliative care to people who are slowly dying of something like heart disease can be much more difficult, because it's very difficult to be very specific with them about what the future holds for them. You know, they might die in a month or they might die in 3, 4, or 5 years…’ (GP 1)
Emphasis on cancer diagnoses
All patients on the cancer register were reviewed and considered for inclusion on the palliative care register at the practices' multidisciplinary team meeting. Other disease registers, such as for heart failure, COPD, or dementia were not routinely used in this way:
‘I think the problem is, we tend to see this as a cancer thing and it tends to get used as a cancer thing. And even though there may be a small handful of people who might well benefit from it or fit with it, we don't often tend to use it for that.’ (GP 6)
Emphasis on the needs of patients with cancer
Health professionals felt the documentation, guidance, and specialist palliative care was designed primarily with the needs of patients with cancer in mind:
‘I think I struggled with [the summary form] a little bit with my man who didn't have a diagnosis of cancer. Trying to work out whether it would show enough information was my main struggle with it, and he hadn't had any radiotherapy or chemotherapy so there's like boxes, swathes of boxes, that go unfilled, but I don't know if there was anything, I mean, maybe a box to just type something. I think it is quite geared towards cancer but, you know, there's space to put things but it just takes a wee bit more looking around.’ (GP 11)
This meant that patients who did not have cancer did not necessarily fit in with the systems and, therefore, possibly did not receive such a good service at the end of life. District nurses felt that patients who did not have cancer were missing out because they weren't identified formally for palliative care:
‘It does make a difference, though, to what care that can get if they are on the palliative care register. They would get free personal care, which they would get anyway, but … we can organise it for these patients. You don't have to go through social work. We, as care managers, can organise that … But it would mean that a non-cancer patient who has palliative care needs would get everything provided so much quicker than if they weren't on the register, as such, and classed as palliative care … We can make sure they get the benefits they are entitled to. They get [an] out-of-hours number, an out-of-hours form would be completed.’ (District nurse 5)
One GP felt that, ethically, patients' expectations should not be raised if services were not available:
‘… especially for non-cancer patients, there aren't always [the] support mechanisms available [as] for cancer patients. It's all very well to say we should treat end-of-life care the same way for everyone but, the fact is, the services available are not the same for everyone. So you have to ensure that there is some benefit to the patient in being in this process.’ (GP 7)
Patients who did not have cancer were often identified at a very late stage — in the last days and weeks of life — with district nurses flagging up patients whom they had been visiting and whose condition had deteriorated. District nurses tended to look out for certain signs of deterioration such as:
‘Indications like being bed bound, not eating, not taking medications, thinking about … reviewing their medications at that stage, withdrawing unnecessary interventions. These kinds of things’ (District nurse 7).
Patients and bereaved relatives also accepted cancer as life limiting more readily than non-malignant conditions. The deterioration of patients who did not have cancer was generally less clear, making it difficult for them and their carers to accept their outlook:
‘But then sometimes there's you and you're saying …“Oh … I wish they could do something for this cough”, but they keep telling you there's nothing they can do. And then it's difficult — you can't accept it.’ (Relative to patient 5 who did not have cancer)
Place of patients' death
Using the data on patients in the study practices who had died, place of death was examined in relation to inclusion on the palliative care register before death. Patients on the register before death were less likely to die in hospital: about a quarter of patients on the palliative care register died in hospital compared with around half of those not on the register (Table 3). Sixteen of the 18 deaths that were not sudden and occurred at home involved patients on the palliative care register.
Table 3 Place of death for patients and inclusion on the palliative care register before death
All of the patients who died in a hospice were on the palliative care register before death and all had cancer. One practice was geographically very close to a hospice, which increased specialist palliative care input:
‘I don't know whether that's because of our proximity to [the hospice] — there's a lot of familiarity now with the hospice. People are very aware of it and family or friends and so they're quite clued up with what they can do and then if they are seeing a nurse from the hospice and the community … The sort of barrier's not there anyway, they're already sort of used to it, seeing someone from it, and they'll discuss it.’ (GP 3)
