Are UK primary care teams formally identifying patients for palliative care before they die?

Setting and recruitment

The study recruited six general practices — two from each of three Scottish NHS boards — representing a range of practice sizes, urban and rural settings, and sociodemographic data. Six general practices were recruited through the local lead GP for palliative care in each of three Scottish NHS Boards.

Data collection

In each practice a mixed-methods approach was adopted. A retrospective analysis of all deaths in a recent 6-month period captured data on:

• date and place of death;

• primary diagnosis; and

• when, or if, patients were entered on the practice palliative care register before death.

Semi-structured interviews were conducted with GPs, district nurses, and practice administrators. The researcher observed a multidisciplinary palliative care meeting and had informal contact with other practice staff. Semi-structured interviews were also conducted with patients currently on the practice palliative care register and relatives of those who had been on the palliative care register and had died in the previous 4–12 months. Appendix 1 outlines the interviewees by practice.

Definitions

The following four categories described in the Gold Standards Framework14 were used to classify the deaths in each practice:

• ‘sudden and unexpected’ meant the patient had not been under regular care by the practice, or only for care such as blood-pressure checks, and had not been expected to die;

• ‘cancer’ was used if this was the major cause of death (remitted or quiescent cancers were not included if not contributory);

• ‘dementia or physical frailty’ included those with a clear record of progressive dementia and/or where frailty was recorded and there was no other specific diagnosis; and

• ‘organ failure/chronic disease’ included those recorded with progressive heart, respiratory, renal and/or liver failure, and those with other chronic progressive conditions.

‘Place of death’ was categorised into home, care home, hospice, community hospital, and hospital.

Inclusion of patients on the palliative care register

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.

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.

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)

Summary

In total, 29% of patients who died were recorded as being on the practice palliative care register before death. Of patients dying of cancer, just over two-thirds were included on the register before death, compared with only around 20% of patients with other diagnoses.

When deciding whether patients should be included on the palliative care register, GPs placed a higher emphasis on personal intuition, clinical knowledge, and subjective judgment of the patient than on current guidelines. In general, GPs saw only limited benefits to patients of inclusion on the palliative care register, and were reluctant to raise the topic of dying early because they did not want to destroy hope.

Practices were more likely to register patients with cancer as being in need of palliative care; in addition, both palliative care services and documentation tended be designed more for patients with cancer than for those with non-malignant conditions.

For patients who did not have cancer, the unpredictable course of their illness led to particular difficulties in deciding when to talk to them. Level of support, which was perceived as being less available for these patients, also made them less likely to be included on palliative care registers. Most patients on the register died at home or in a hospice; in comparison, more of those who were not identified as eligible for palliative care died in hospital.

Strengths and limitations

The six practices were diverse, but are likely to have been confident in their palliative care provision to agree to participation in the research. The views of self-selected practice staff interviewees may not be representative of other colleagues within the practice or across the UK. Practices were more likely to select bereaved relatives for interview whose loved ones had died at home. On the whole, these factors are likely to increase the identification of patients for palliative care, so barriers described may be even more evident in other practices.

The data presented here reflect where practices have documented a patient as being on the palliative care register using an approved framework. Extrapolation from national uptake data for the Scottish Palliative Care DES in the financial year 2009–2010, combined with data on deaths in Scotland, suggests that around 24% of people were on a palliative care register at death: close to the 29% found in this study (Appendix 2). It is recognised that other patients not on the palliative care register may have received holistic care that was entirely consistent with palliative care. One GP spoke about the similarity of care before and after a patient was put on the palliative care register — that particular practice's approach was holistic for all their patients with chronic illnesses.

It is unlikely that all patients, even excluding those whose deaths were sudden and unexpected, could be included on a palliative care register. For example, in this study, several patients newly diagnosed with cancer died before they left hospital and never returned to the care of their GP. The observation that patients on the palliative care register before death were more likely to die outside hospital cannot be interpreted as causative. Practices may select patients for the palliative care register whom they expect to care for at home. In addition, place-of-death data for home and care homes was combined as usual place of residence, but this may not be the case for patients who are admitted to care homes directly from hospital specifically for palliative care purposes.

Comparison with existing literature

In line with this study's findings, a comparison of patients dying of cardiorespiratory and malignant disease in two general practices in England found that patients with cancer were more likely to be recorded as being in receipt of palliative care, although both groups were equally likely to die at home.15 A qualitative exploration of the experiences of those dying with lung cancer and cardiac failure found that those with lung cancer were provided with more information about their illness and experienced a more predictable decline.16 Boyd et al also found that late recognition was common in general practice — there was a tendency for ‘planning for dying, rather than planning for living and dying’.17 Practical advice on how to recognise when a patient might benefit from the supportive and palliative phase is available;18 this may help address the reluctance this study found clinicians have to introduce the subject of end-of-life care.

This study found a higher proportion (25%) of sudden unexpected deaths than in previous estimates. The Gold Standards Framework Prognostic Indicator Guidance14 and the National Audit Office report of 200819 outlined an estimated 5–10% sudden deaths, although GPs in the Gold Standards Framework's 2009 National Snapshot reported that 42% deaths were unexpected.20 This variance may, in part, be definitional or may be due to the population studied. Some of the difficulties of providing comprehensive palliative care in the OOH period in Scotland, previously identified,21 have been addressed by the national availability of summary palliative care information to OOH providers. GPs in this study who worked for OOH services found this summary information invaluable, but other GPs interviewed were not convinced it was being used fully. The proportion of patients dying in hospital in this study was similar to that previously reported.19,20

Implications for practice and research

Including more patients on the practice palliative care register increases coordination and communication, and has the potential to decrease the proportion of patients dying in hospital. This policy and practice initiative needs further support and continuing priority. The benefits of including patients on the practice palliative care register should be highlighted to practice teams to encourage them to do so.

There are differing views among health professionals regarding the appropriate time to include a patient on the palliative care register. District nurses want the opportunity to register patients before they become too ill, but GPs are reluctant for patients to be on the palliative care register for >1 year. Delayed identification of patients needing palliative care contributes to the low proportion identified, as patients may die suddenly. An intervention study addressing these barriers is needed so that more patients can be systematically identified.

Palliative care services and supporting documentation have often been designed with patients who have cancer in mind, such that other patients have to be ‘fitted in’ and services adapted to support them.22 End-of-life services should be reviewed and transformed to meet the needs of people dying on the three main trajectories of physical decline routinely, not just the more acute (typically cancer) trajectory.23 Practices also need to use pointers such as frequent OOH calls or hospital admissions, rather than a cancer diagnosis, to identify patients with potentially life-limiting conditions for inclusion on their register. Practices should also audit patient inclusion on the palliative care register, in addition to cause and place of death, and discuss results in multidisciplinary meetings.