Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Research aim

To examine how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspectives of older patients and key service providers and commissioners.

Research objectives

1. To explore the extent and current management of palliative care need within acute hospitals.

2. To identify patient factors that are predictive of key aspects of palliative care need and, in particular, physical and psychological symptom load.

3. To examine the circumstances under which transitions to a palliative care approach occur within acute hospitals, with a particular focus on the influence of age and disease type on decision-making.

4. To explore how decisions to move to a palliative care approach are made and who is involved in decision-making.

5. To examine if and how information about a transition to a palliative care approach is communicated to patients and their families and how they are involved in decision-making.

6. To explore the perspectives of patients, service providers and commissioners regarding acute hospital admissions and discharges associated with a transition in care.

7. To identify those hospital admissions amongst people with palliative care needs that were avoidable but which occurred because of a lack of alternative service provision or support in the community.

8. To identify patient factors predictive of avoidable hospital admissions.

9. To quantify the cost of avoidable acute hospital admissions amongst those patients with palliative care needs.

Study settings

Ethical issues: the retrospective case note review (phase 6)

We were unable to obtain patient consent to collect data for the retrospective case note review as we were examining notes of patients who had died. Therefore, additional ethical approval was sought from the NIGB ECC under section 251 of the NHS Act 200643 for use of identifiable patient data without patient consent. We recognised this as an ethically contentious issue and as such undertook significant consultation with our service user group and experienced academics and clinicians to inform our application.

Commenting on whether research in this area is important

A discussion was had about the value and the merits that the group members found in the proposed research. Members gave examples of both positive and negative experiences of end-of-life care. It was emphasised that a good death should be seen as a success in medical terms. The group feedback was incorporated into the study’s application for ethical approval, and facilitated the approval process.

Developing project information leaflets for distribution to the public and assisting with distribution

The group designed and agreed content for a project information leaflet. Members encouraged a more positive style of language and pointed out areas in which more explanation about the research was needed. The group identified places where the leaflet could usefully be distributed (e.g. day centres, local council offices and Age UK) and many members were involved in distribution.

Identifying ethical problems with or concerns about the study

One of the most important contributions of the advisory group has been in negotiating the ethical challenges of the study. All ethically contentious issues were discussed with the group to inform the study design and to assist with applications submitted to the research ethics committees. The most ethically challenging issue related to gaining approval from a specialist ethics committee to undertake a retrospective medical case note review of patients who had died. An initial application made by the project researchers was rejected on the grounds of the contentious ethical issues. A dedicated meeting of the advisory group was held to gain detailed feedback on the issues raised, which was then incorporated into a revised application. Additional written support from one member of the group was also supplied and a second application to the ethics committee was approved. It is worth highlighting how crucial the input of the advisory group was in securing this ethical approval; without it it is extremely unlikely that a key component of the project would have been able to go ahead.

Commenting and providing feedback on the project website and suggesting content

The group agreed that a project website (see www.transitionstopalliativecare.co.uk; accessed June 2013) was a very good idea as it would help to disseminate information about the study to a wider audience, especially younger people. Suggestions for content included links to other related websites and regular updates on the input of the advisory group.

Contributing to dissemination and distribution of the research findings

To see the results of the research being implemented, the group was keen to play a part in disseminating findings from the study in different forums. Some wanted to do so informally through face-to-face encounters with their peers and with people they came into contact with on a regular basis: ‘That’s far more effective than reading it in a written report in the funder’s office.’ The group also agreed that it was important to see findings disseminated through the mainstream media.

Background

The transition to palliative care can be a confusing and traumatic time for patients and their families, and may trigger fears of helplessness and abandonment. 52 Although traditionally a sharp transition point has signalled the beginning of palliative care, more recent therapeutic models have described an approach incorporating gradual transitions, emphasising palliative input and QoL considerations during the active phase. 53 A phased transition or simultaneous care approach recognises that treatment goals evolve and that concurrent curative and palliative care may be most appropriate. 25

A scoping review by Marsella54 identified three key elements that complicate the transition to palliative care. First is the nature of the transition and what it means to patients. Second, transitions can be difficult because of a lack of time to appropriately prepare patients and families. Lastly, a lack of information regarding the goals of palliative care can lead to confusion and complications. Schofield and colleagues55 undertook a literature review as the basis for outlining steps for facilitating the transition to palliative care. Although these steps provide useful recommendations, the authors acknowledge a paucity of research in the area and fail to address the impact of variations in health-care systems and resources in cross-national literature.

Evidence also suggests a lack of concordance with respect to triggers indicating the appropriateness of a transition to palliative care. Although policy guidelines advocate the use of the ‘12 months’ question as an indicator that patients may require palliative care input, recent evidence suggests that this question may not be appropriate for patients with non-cancer diagnoses. 56

The Gold Standards Framework (GSF)57 suggests the use of a prognostic indicator guide to identify patients predicted to be in the final 12 months of life who might be in need of palliative care. However, implementation is variable and the direct impact on patients and carers is not known. 58

Review methods

A systematic review of qualitative and quantitative literature was undertaken to explore evidence relating to transitions to palliative care in the UK. The review was undertaken in the following five stages: (1) search strategy, (2) inclusion criteria, (3) assessment of relevance, (4) data extraction and appraisal and (5) data synthesis using a descriptive thematic model.

Assessment of relevance

Study selection was conducted in a systematic sifting process over three stages: on the title, abstract and full text. Details of the study identification and selection process are shown in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) flowchart in Figure 2. At each stage studies were rejected that definitely did not meet the inclusion criteria. Each paper was independently assessed by CG and one of the other authors (CI, MG or TR); in cases in which there was disagreement between researchers, consensus was reached by discussion.

FIGURE 2.

Flow chart of included literature.

Results

Of 1464 citations initially identified, 12 articles61–72 (relating to 11 studies) met the inclusion criteria. Articles that were excluded (n = 1452) were not relevant to the research aim or were not UK papers (Figure 2). One paper included both UK and European data and was included. 61 Eight of the included articles were qualitative studies of patients, carers or health professionals. 61–67,72 One study was a mixed-methods comparative cohort study,68 one a case study report,69 one a critical discourse analysis70 and one a non-empirical discussion piece. 71 Transition to palliative care was the main focus in only two of the included papers;61,72 the remainder referred to transition only as a minor theme or as a component of the discussion.

Most papers scored satisfactorily on assessment of methodological rigour, with no paper scoring < 28 out of a maximum of 36. One paper71 could not be scored as it was a non-empirical expert opinion piece; therefore, findings from this paper should be considered with caution. Details of the 12 papers and assessment scores are provided in Table 1.

The thematic synthesis of evidence led to the emergence of four main themes: (1) patient and carer experiences of transitions, (2) recognition and identification of the transition phase, and criteria for making transitions, (3) optimising and improving transitions and (4) defining and conceptualising transitions.

Conclusions

Recent UK policy has stressed the importance of managing and facilitating the transition from curative care to palliative care. This review of the literature suggests that, within a UK context, little is known about this potentially complex transition, and literature relating to the optimisation of the transition is sparse. As such, the review attempts to identify important issues for the conceptualisation and optimisation of transitions to palliative care. It is clear that such transitions can be a confusing and distressing time for patients and their families. They can leave patients and their families feeling abandoned and lacking a clear understanding of their future care and treatment options. Facilitating a sensitive transition is therefore imperative for improving the experiences of patients and their families at this difficult time.

The current review identified only four papers that include suggested criteria for identifying the transition to palliative care, and none has been formally evaluated or validated. Further indicators have recently been proposed by Boyd and Murray,30 taking into account a review of prognostic models and guidelines. They propose that clinical judgement informed by evidence, rather than more refined prognostic accuracy, is the key to an earlier identification of patients with palliative care needs. There is a clear need for further formal validation of proposed indicators if a model of best practice is to be identified. Internationally developed indicators such as the US National Hospice and Palliative Care Organization tool should also be considered. However, the organisation and resourcing of palliative care services in the USA and elsewhere may define a sharper transition to palliative care accompanied by an immediate cessation of curative care, thus reducing the appropriateness of US models for a UK health-care system.

Recommendations for optimising or improving the transition to palliative care are similarly sparse, despite recognition that patients and their families often experience a poor transition in their care. A key challenge is sensitively managing the often abrupt change in care provider, care location and care goal that has traditionally accompanied a referral to specialist palliative care services. The abruptness of these changes can lead to patients and their families feeling confused and abandoned, and recommendations highlight a need for collaborative working and continuity of care during the transition. 62,67,68 Evidence suggests that continuity of care is crucial to achieving a sensitive and well-managed transition. UK strategies currently place emphasis on improving the palliative care that is delivered by generalist providers (primary care teams, hospital staff, social-care services),30 who are often well placed, because of their long-standing relationships with patients, to provide high-quality palliative care whilst retaining continuity of care. However, it is likely that they will need support from specialist palliative care services and close collaborative working between care providers is necessary so that patients with a need for palliative input are identified whilst disease-modifying treatments continue.

Many patients may stand to benefit from better identification, assessment and management of the transition to palliative care. Research is required to further explore these issues, particularly in light of evidence which suggests that some patients may be reluctant to receive information relating to a poor prognosis or ‘bad news’. 74,75 A phased transition incorporating palliative care in parallel with disease-modifying treatments appears the most appropriate model for optimising transitions. This model is particularly relevant for patients with non-cancer disease, whose condition may be more slowly progressive, or with fluctuating trajectories. Within this phased transition, continuity of care and multidisciplinary collaboration are crucial. An agreed consensus of definition, and potential refinements to the concept of ‘transition’, may also be necessary to enhance consistency. Further research is required, taking into account UK policy and guidance, to maximise current resources and develop appropriate guidelines and care models for managing the transition from curative care to palliative care.

Background

The need to more fully understand the economics of palliative care provision is widely acknowledged. 76 One area in which it has been suggested that costs could be saved, or at least more appropriately distributed, relates to place of care in the last 12 months of life. For example, the second annual report on progress in implementing the end-of-life care strategy for England notes that maximising scarce health-care resources must be a priority given the current economic climate. 77 It is also suggested that, in end-of-life care, such economic rationalisation is linked to improving quality because most people would prefer to die in their own home, and, it is suggested, high-quality community-based services cost no more, and can cost less, than hospital-based care. Currently, around 90% of people spend time in hospital in their final year of life, and the total cost of non-elective final finished consultant episodes ending in death amounts to around £750M per annum. By improving or expanding community services to allow more people to be cared for and to die at home, a proportion of these costs could be avoided.

However, such assumptions should be considered within the context of the increasing body of work being undertaken on ‘avoidable hospitalisations’. In the international health policy literature, the terms ‘preventable hospitalisation’ and ‘avoidable hospitalisation’ are used interchangeably to denote an admission or readmission relating to an exacerbation or acute illness episode associated with a chronic health condition that could otherwise have been avoided through health promotion, preventative measure, or timely access to primary health care. 78

A recent systematic review of the literature aimed at identifying factors predicting preventable hospitalisations within the context of chronic conditions identified a lack of clarity relating to both scope and solutions, therefore limiting its ability to inform practice and policy. 78 However, the evidence base regarding the extent of potentially avoidable admissions for patients in the last year of life, and in particular the link with reducing/redistributing overall costs for end-of-life care, has not previously been systematically evaluated.

With this context in mind, we present a narrative literature review, systematic in nature, of UK evidence regarding the potential economic impact of reducing hospital admissions amongst patients with palliative care needs.

The review aimed to identify studies that estimated or directly calculated the economic impact of avoidable admissions, or which reported the impact on hospital admissions or inpatient usage of introducing new palliative care services to support patients in the community. The review focused on evidence from the UK on the basis that international variations in health systems and funding are likely to influence the economic consequences of avoidable admissions and therefore conclusions drawn from other countries may not be generalisable to the UK setting.

Methods

The literature search included a search of 10 electronic databases using search terms devised in consultation with a specialist librarian; examination of a number of papers that had been recommended by colleagues; and a hand search of reference lists from relevant papers. Databases searched were MEDLINE, EMBASE, CDSR, Cochrane Central Register of Controlled Trials, Health Technology Assessment (HTA), NHS EED, BIOSIS, Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO and Web of Science. The databases were searched from inception to April 2010. Key search terms used to identify studies reporting on avoidable hospital admissions included ‘hospitalisation’, ‘length of stay’, ‘hospital stay’ and ‘inpatient’. Palliative care was identified using terms including ‘palliative care’, ‘hospice care’, ‘life support care’, ‘terminal care’ and ‘home care services’. End-of-life care was identified using terms including ‘end of life’, ‘terminally ill’ and ‘last year of life’. These terms were combined with an economics filter to identify studies reporting the economic consequences of avoidable admissions.

Results

The electronic search identified 346 unique papers of which 339 were excluded at the title and abstract stage. Of the remaining seven papers only one79 met the inclusion criteria. Four studies80–84 were identified through other means. A total of six papers describing five studies were therefore included within the review.

A summary of the studies is given in Table 2. Two80,81 of the five studies were randomised controlled trials (RCTs) comparing the addition of new services to support patients in the community at the end of life with the existing standard service provided for these patients. These papers reported on the impact on hospital admissions and/or inpatient usage of the provision of these additional services for terminally ill patients and hence indicate the scale and economic consequences of admissions avoided following the provision of improved community services. A third study82 was a descriptive analysis of the change in usage and costs of health-care services following the introduction of two community-based services in Boston, Lincolnshire, as part of the Marie Curie Delivering Choice Programme to develop services that allow people to be looked after and die in the place of their choice. The final two studies79,83 were retrospective analyses of patient records for patients who had died in hospital to estimate the proportion of final admissions that could be classified as avoidable.

Discussion

The evidence on the economic impact of avoidable hospital admissions for patients at the end of life in the UK is limited and contradictory.

The overall cost impact of avoidable admissions should take into account not only the cost savings from reduced inpatient usage but also the cost of supporting patients in alternative locations (their own home, care homes, etc.). The two retrospective studies considered only the cost savings from admissions labelled as avoidable. 84,85 Of the remaining studies, that by Raftery and colleagues80 was the only study to report a cost saving, a reduction in the mean cost per patient of £3260. In the more recent study by Addicott and Dewar,82 the cost of acute care and the total costs of community care remained largely unchanged. Raftery and colleagues80 reported on a more limited range of costs than Addicott and Dewar,82 reporting only inpatient days, outpatient and day-care attendances and home visits. GP and social services costs were reported as showing no differences between the groups. The difference in findings may in part be because a broader range of costs was collected in the study by Addicott and Dewar,82 including agency day and night cover, health-care assistant support, ambulance discharge and after-hours paramedic services. However, the largest cost reductions in this study were seen in relation to the reduction in GP visits, in direct contrast to the study by Raftery and colleagues,80 which showed no difference in GP costs between the groups.

The cost savings generated by the reduction in inpatient bed-day usage will depend on the total number of admissions avoided, the associated length of stay of these admissions and the complexity of patient needs during the admissions.

The assumed cost per inpatient day was similar between the Balance of Care Group study83 and the study by Abel and colleagues;79 the derived cost savings varied as a result of longer lengths of stay associated with the avoided admissions in Sheffield. 83 The majority of studies did not report the impact on indirect costs, such as lost productivity and informal care provided by family and friends. The only study84 to collect indirect costs for both the patients and their families did not report them on the basis that they were relatively low and did not vary between arms; however, no details are provided.

The identified studies are subject to a number of weaknesses. The quality of the evidence is mixed. The study by Raftery and colleagues80 suffered from high dropout rates between recruitment and first follow-up. This varied between groups and may have led to potential bias as a result of the imbalance amongst the previously randomised groups, as well as creating problems in relation to statistical power because of attrition. Similarly, the study by Grande and colleagues84 suffered from problems of obtaining sufficient statistical power and dilution of the treatment effect.

The significant increase in the likelihood of dying at home in the subsample of patients admitted to the hospital at home scheme may have been due to the characteristics of the patients who were admitted to the scheme, rather than the service itself.

The non-RCT studies are subject to more important limitations. The absence of a control group in the study by Addicott and Dewar82 reduces the ability to draw robust conclusions. Differences in case mix cannot be accounted for and therefore the influence of case mix on differences in service usage between years cannot be ascertained. The two retrospective studies83,84 involved subjective assessments of avoidable admissions, although it is acknowledged that clinical decisions to admit patients to hospital are subjective by nature. Both studies assumed no capacity restrictions in relation to alternatives to hospital care and therefore represent an upper ceiling on the estimate of the proportion of admissions that may be avoided.

Although this review considers only UK literature, the wider international evidence base lends some support to the view that hospital admissions can be avoided, with accompanied cost savings, by improving palliative care support in the community. 85,86 The National Audit Office End of Life Care report86 identified 25 international studies reporting on the effects of palliative care during the last year of life. The majority of studies reported cost savings, although three studies reported increases in the average cost per patient. Other recent international reports suggest that new palliative care interventions do not necessarily lead to reductions in hospital use. For example, in Canada, after the first 12 months, Ontario’s end-of-life care strategy failed to show any impact on individual patients’ use of end-of-life home care and acute care services. 87 The extent of changes in resource use and costs in any particular country or locality is likely to depend on the baseline levels of service use and funding incentives within the health-care system. Differences between the basic health-care service provision in the UK and that in other countries suggest that the results of international studies are unlikely to be generalisable to the UK.

Conclusions

This study has found that the evidence base from the UK relating to the economic impact of avoidable admissions in palliative care is limited. The studies suggest that the economic impact of avoidable admissions may vary according to a range of factors, including the baseline service provision, the type of new community interventions introduced and the complexity of needs of the patients under consideration. Findings from one location need to be interpreted with caution and cannot be assumed to be transferable, either within or between countries.

Further high-quality evidence is needed to provide a more robust estimate of the extent to which the additional costs of providing high-quality community support can be offset, at least to some extent, by a reduction in inpatient usage by palliative care patients. Further studies should be undertaken in the UK to explore the generalisability of the recent retrospective studies reporting high levels of avoidable terminal admissions. The potential for avoiding other (non-terminal) palliative care admissions should also be explored. In addition, more research on the variation in the cost of supporting patients in non-hospital locations would be useful to assist understanding of the economic consequences of avoiding admissions. More importantly, additional prospective studies are needed that seek to demonstrate the scale of admissions that can actually be avoided in clinical practice, when issues such as capacity constraints come into play.

Methodological approach

Given the exploratory nature of the enquiry and the limited existing evidence base, a qualitative study design was adopted. Focus groups were used to capitalise on group interactions and to elicit rich experiential data by exploring participants’ knowledge and experiences. 97 Individual interviews were held with consultant-level staff who wanted to participate in the study but were unable to attend a focus group.

Sampling and data collection

Four focus groups were held at general practices (groups comprised four, six, seven and 11 participants). Two focus groups (both comprising five participants) and four interviews were held in acute hospitals, and two focus groups (comprising six and nine participants) were held in hospices. We held individual interviews with consultants who wanted to participate in the study but were unable to attend a focus group.

Focus groups and interviews were held in the two cities – Sheffield and Lancaster – where all components of the research project took place. Staff at acute hospitals and hospices were identified and approached through senior medical and nursing staff with the assistance of researchers. General practices were identified and recruited through local primary care research networks.

Purposive sampling was used to select a diverse range of health professionals and achieve the maximum possible variation of experience and opinion and reflect the diversity within the population (Table 3). However, focus groups were also held with members of existing health-care teams to support the illumination of cultural values informing the work of the team. 98

The focus group and interview guide (Box 1) was developed following a review of the literature (see Chapter 3) and relevant policy and addressed the overall aim of the study, namely to explore how transitions to a palliative approach to care are currently managed in acute hospitals in England. The interview guide covered the following key areas: understanding and experience of palliative and end-of-life care, management and organisation of care and management of transitions to palliative care. The same interview guide was used for all focus groups and individual interviews.

Recognising the palliative transition point

Participants identified that structured transitions to a palliative care approach early in the patient disease trajectory, advocated in policy, are rarely evident in acute hospital settings. Key to changing the focus of care is a discussion of prognosis, and all participants reported that prognostic discussions with patients and their families were not routine:

Researcher: And is prognosis routinely discussed with patients in hospitals?

Participant: We never do that . . . I think for a variety of reasons. We don’t routinely do that. It’s not because we don’t want to provide information but quite often breaking bad news to a patient can be pretty difficult . . . and we take a very different approach which may not be right but unless the patient asks their prognosis we don’t tell them the prognosis.

Secondary care, consultant geriatrician

Participants identified that the failure to appropriately time palliative care transitions could have negative implications for meeting a patient’s end-of-life preferences:

They don’t always recognise that yes they are in the last few days of life and that person wants to go home, until the very last minute. Then they ring up . . . like we had one this morning, he’s coming home tonight . . . they must have known really from the information that they’ve given me that this was going to happen but they leave it until the very last minute.

Primary care, district nurse

Participants also reported that, in their experience, a phased transition in which ‘curative’ and ‘palliative’ approaches to care were adopted concurrently was rarely evident in the hospital setting, apart from amongst cancer patients receiving palliative chemotherapy. Indeed, an ‘either/or’ mentality amongst clinicians about approaches to care was reported:

Some feel that by just doing palliative care we don’t need to cure . . . we can just stop everything and just give pain relief and even sometimes they say it’s debatable whether to give IV [intravenous] fluids or sub fluids.

Secondary care, geriatric specialist registrar

The importance of good communication within and between clinical teams and settings

The role of good communication in supporting decision-making relating to a palliative care transition was identified as key by all participants:

Participant: You have to communicate well to get across that this patient is palliative.

Researcher: You mean communication to the patient?

Participant: To the patient, to the family, to colleagues, you’ve actually got to be able to communicate well.

Primary care, GP

A critical first step in this process was seen to be communication within the hospital setting and, in particular, reaching a consensus amongst all clinicians involved in a patient’s care that a palliative approach was now appropriate. The opinion and approach to treatment of the consultant were seen to be pivotal in this respect:

You’ve got to have some sort of consensus though about how you’re going to treat the patient . . . and sometimes I think what happens in a hospital is that the consultant is seen as the be-all and end-all so their decision is what decides it, whereas actually you need to reach a decree amongst a number of people.

Secondary care, geriatric specialist registrar

Issues of power within the professional hierarchy of the hospital were discussed within this context, both between medicine and nursing and within medicine itself. The need for nursing staff to be provided with opportunities to raise their concerns about the approach being taken to a patient’s care was identified:

I think maybe that point when the nurses start triggering and saying ‘why are we doing this?’, it would be nice for them to be able to, I don’t know, circumvent or put up a flag so that somebody else gets involved, or some kind of mediator. Because I get a lot of nursing staff telling me ‘why are we doing this? Why do you keep doing this?’ And I say ‘why didn’t you ask yesterday when the consultant was coming round because it would be really nice for you to ask somebody more senior than myself what their intentions are in the situation’. But it’s well ‘you’re here now, why aren’t you doing something?’ But actually I am, I’m following the plan that I have available to me and I can question it but I’m still not going to change that unless obviously something significant happens and it’s an acute deterioration but I still feel there’s a lot of . . . I don’t know, stresses in the system.

Secondary care, geriatric specialist registrar

Consultant clinicians participating in the study acknowledged that they found decision-making around the palliative care transition challenging:

I think sometimes the transition from an intervention to palliative care sometimes can be pretty daunting for me as a consultant, I don’t know what experiences you have interviewing others but I certainly find it difficult, and you may have to take a softly-softly approach, one step at a time, and then say look the outlook looks grim so we may have to move from there, we need to discuss it with everyone else, with the relatives and everyone else and see how you can take this forward. I mean it’s very difficult.

Secondary care, consultant geriatrician

Participants also identified the importance of documenting decisions made to adopt a palliative care approach in the patients’ notes. They acknowledged that this rarely happened currently and could represent a barrier to ensuring continuity of care.

The importance of good communication between clinicians and patients/families

The need to improve clinician/patient communication about palliative approaches to care was also discussed at length by many participants:

I think it’s the definition of discussion isn’t it? It’s very different to a consultant than it is to a patient. They go around and say ‘oh you’ve got this and this is what’s going to happen’ and walk off and that’s discussed, whereas what the patient wants is to sit down for a good hour or so and ask loads of questions. So although it’s appropriate that it’s discussed before they come home it’s got to be in the right setting.

Primary care, district nurse

However, many participants challenged the idea that information regarding a palliative care transition should routinely be conveyed to patients within hospital settings, advocating instead for the GP to take a lead in these discussions:

Researcher: Do you think that prognosis is routinely discussed with patients in hospitals?

District nurse: No.

GP1: No.

GP2: If it is it’s not often.

GP1: My evidence to answer that question is from the patients and I would say no.

GP3: Some patients don’t ask and they don’t want to know. Because basically you’re saying that we aren’t on the curative line any more and I think it takes . . . you don’t have the relationship that GPs have with the patient because you haven’t necessarily known them for a long period of time and you don’t know the family whereas often in a community setting you know them and you’ve known them over a period of time, you’ve known their relatives, and I think the context is very difficult in hospital, it’s much more clinical in the hospital.

Primary care

Participants identified particular difficulties in communicating with patients with conditions other than cancer, who, it was recognised, were particularly likely to undergo a very late transition to a palliative care approach. Although they recognised policy guidance regarding the use of the ‘surprise question’ – ‘would you be surprised if this patient were to die in the next 6/12 months?’ – respondents grappled with how to convey this information to patients:

If somebody were to ask you that question – ‘would you be surprised if they were dead in 12 months?’ – well no you wouldn’t but you wouldn’t be amazed if they were alive either, so you can’t communicate that to a patient in a way that’s meaningful to them so I think we don’t discuss it.

Secondary care, consultant geriatrician

Primary care clinicians reported that their ability to inform the patient more fully could be compromised by the failure on the part of the hospital to convey treatment information to them in a timely manner:

I think it should be secondary and primary care working together alongside, alongside each other, and the communication is the biggie and unfortunately we still haven’t got it right. We’re working towards that I know, but I don’t think it’s still there.

Primary care, community matron

The ability to act on expressed preferences regarding place of death

Participants identified that a further barrier to communicating information to patients and their families regarding a palliative care transition was the extent to which any preferences for end-of-life care that were expressed as a result could be acted on:

What I wanted to say is even though we have developments in advanced communications and advanced planning mechanisms that are coming in to help shape some of the decision-making, even when you put patients and the families central to that process and they may express themselves that they want to die at home etc., because of a whole host of issues that we’ve touched on, including resources, that that’s just not always possible and a huge percentage of people die in a place that they would chose not to do so.

Secondary care, hospice nurse

Indeed, many participants reported that, in their experience, patient preferences for place of death, and in particular dying at home, could not always be met for a range of reasons:

People get admitted to hospitals because there’s a deterioration in an illness. And there’s nowhere particularly for them to go . . . they want to go home but that depends on a lot of communications with the family, the person, the carers, the MDT [multidisciplinary team] to make it possible really and so, with the best will in the world sometimes, people will end up dying in hospital.

Secondary care, palliative medicine consultant

Barriers to ensuring appropriate palliative care provision for older patients

Significant barriers were identified to providing palliative care and instigating referrals to specialist palliative care teams for older patients. Several participants acknowledged that an older patient with palliative care needs elicited a different response from them than a younger patient with comparable needs, and that this had implications for clinical practice. For example, a terminal diagnosis in an older person was seen as less ‘shocking’ and more expected than a terminal diagnosis in a younger person:

I think it’s possibly the case that . . . it’s more acceptable in older people . . . it’s the good innings argument . . . you know they’ve had their innings, they’re old so they’ve perhaps got less to live for.

Secondary care, consultant geriatrician

Limited social and family support was also identified as contributing to a lack of palliative care provision for older people. Younger people were seen to have more comprehensive support networks, as well as often having an advocate who could demand best-quality care on their behalf. Limited access to specialist palliative care services was also seen to compound the lack of psychosocial support available to older people more generally, many of whom live alone:

There’s often a lot more support for younger people as far as families and people go. With younger people nearly always family members, friends, neighbours will rally round. Often with old people there’s no one.

Secondary care, hospice nurse

Lack of resources, particularly for older people dying from conditions other than cancer

Both generalist and specialist palliative care provision within acute hospitals were identified as being particularly deficient for the population of predominantly older people dying from conditions other than cancer. It was reported that patients with non-malignant disease were less likely to be referred to specialist palliative cares services, in part because of the historical link between cancer and palliative care:

Practice nurse 1: They don’t admit them to the palliative care unit do they . . . the COPD [chronic obstructive pulmonary disease] and heart failure?

Practice nurse 2: They go on to the general ward.

Primary care

Generalist palliative care provision within acute hospitals was seen as being particularly susceptible to resource restrictions. It was acknowledged that inadequate staffing levels and increased time pressures on generalists impacted on the ability of staff to provide good palliative care. Psychosocial palliative care, in particular, was rarely prioritised under these circumstances:

The staffing levels there [hospital] are often so poor that it isn’t a question of not wanting to do it, it’s not being able to do it. They’re not even able to satisfy the basic requirements, much less go in and listen to people in the way that they’d like to.

Secondary care, hospice social worker

A focus on acute or interventionist care

Participants reported that both generalist palliative care and timely referral to specialist palliative care could be compromised by an inappropriate focus on interventionist care with a curative intent. This was described in some instances as a reluctance of doctors ‘to let patients die’. The widespread public expectation that hospital is a place ‘where ill people go to get better’ was cited as a further justification for the focus on acute care, with physicians not wanting to seem as if they had ‘given up’ on patients:

I think some doctors find it difficult to let go, some doctors find it uncomfortable to admit that the patient is going to die, they feel that they should carry on, doing all they can for them in terms of investigations and treatment.

Secondary care, consultant geriatrician

Palliative care for patients with dementia

Particular difficulties were noted with the provision of timely and appropriate palliative care for patients suffering from dementia. The data suggest that there remain considerable difficulties in the achievement of good-quality end-of-life care in the form of palliative services for people with dementia. There are two notable subthemes: candidature, and ‘rising tide’ and resources.

The notion of candidature refers to the ways in which people with dementia are seen, or not seen, by health-care practitioners to be the potential recipients of palliative care provision. To some participants in the study, the idea that dementia constituted a condition that might on its own be a cause of death was questionable. Reluctance to acknowledge this resulted in a failure to access services of a palliative nature:

Dementia isn’t a disease it’s just something that happens to people.

Secondary care, specialist palliative care team

Dementia is not terminal.

Primary care, GP

I think people with dementia are not considered often in the same league as somebody with heart failure, COPD or cancer. That is what happens to elderly people isn’t it? They get confused.

Primary care, GP

The final quote suggests that other conditions are considered worthy of specialist palliative care whereas dementia is not. Considerable discussion relating to criteria for referral to palliative services was noted and, in particular, the idea that cancer had been recognised for a long time as being the only condition that might warrant such care. Participants in this study reflected on their own experiences of how services inhibit the transition to palliative care for older people, particularly those who have dementia:

Elderly with dementia don’t really get the care. They don’t get the active palliative care, you know what I’m talking about, active treatments, active palliative care.

Primary care, GP

And it’s always been . . . again there’s been this idea that it’s almost like a culture that demented elderly patients belong in, and I hate to use the term, but geriatric units. That’s where they go, they don’t come to hospices or anywhere for palliative care even though they’re just as deserving as anyone else.

Secondary care, hospice nurse

Questions about the resources available to teams to enable them to provide palliative care to a wider population (including people with dementia) were raised. The ideas expressed below, by members of a specialist palliative care team in the community, suggest that existing pressures, combined with an already stretched capacity to deliver to its existing client group, have created tensions over being able to offer its services to people with dementia:

We just couldn’t do that [provide palliative care to people with dementia]. We don’t have the resources but people with dementia are just allowed to die in nursing home or rest home beds.

Primary care, GP

But is [increasing dementia referrals] just reducing the palliative care service available to perhaps other people, I don’t know?

Secondary care, hospice nurse

I would think in terms of beds, we’re struggling as it is for palliative care cancer, if they take [dementia] in it’s going to be absolutely chaotic.

Primary care, nurse

Discussion of a ‘rising tide’ scenario prompted alternative proposals about the function, nature and possible model of palliative care for people with dementia. Focus group participants articulated a reluctance to offer people with dementia palliative care because their difficulties may not be the same as those of cancer patients, particularly in the realm of pain management. This amounted to a very different approach to palliation in dementia, relying on basic nursing skills and activities such as mouth care, pressure care and maintenance of dignity, which could be provided adequately by non-specialist teams:

Good symptom management, good emotional support, good support for the family, psychological and spiritual, social support, should be part and parcel of what everybody does and it should be offered to absolutely everybody I think.

Secondary care, specialist palliative care team

Survey methods

A comprehensive survey of hospital inpatients was undertaken in two UK hospitals selected for their sociodemographic diversity. The SNGH has > 1100 beds and serves a largely urban, economically disadvantaged and ethnically diverse area. In contrast, the RLI has approximately 400 beds and serves a predominantly white Caucasian semi-rural/remote rural population. Although the term ‘census’ was originally proposed to describe this phase of data collection, this has been replaced throughout by the term ‘survey’. This was because of concerns that the term ‘census’ implies a collection of a complete population data set. However, this was not possible as the ethics committee stipulated that data collection from patient notes was restricted to those patients who consented to involvement in the study.

The survey of the SNGH was undertaken over an 11-day period in May 2010 and the survey of the RLI took place over a 5-day period in November 2010. All inpatient wards, with the exception of children’s wards and mother and baby units, were included. Each ward was visited by two members of the data collection team at some point during the survey period. Inclusion criteria were age ≥ 18 years and resident on the ward at 0900 on the day that the ward was surveyed. Non-English-speaking patients and deaf patients were excluded because of a lack of translation facilities.

The approach to the inclusion of patients lacking capacity to consent for themselves was developed in line with Mental Capacity Act 2005 guidance. 10 Senior medical and nursing staff, and relatives (when available) were consulted to identify any patients lacking capacity to consent. Personal consultees (relatives or close friends) were identified and, when available, were invited to participate on behalf of patients lacking capacity.

For patients/consultees who consented to participate, the following data were collected:

1. Data from patients’ hospital case notes comprising evidence of palliative care need according to GSF prognostic indicator criteria57 (the GSF prognostic indicator guide provides 11 diagnostic criteria categories, which provide an indication of patients who might benefit from palliative care input); reason for admission; sociodemographic and diagnostic information; details of comorbidities; evidence of adoption of a palliative care approach using a list of predefined indicators (identified by health professionals during a previous qualitative phase of this study; see Chapter 4); number of hospital admissions in the last 12 months; discharge plans.

2. For each consenting patient a member of the medical staff and a member of the nursing staff known to the patient were interviewed. Staff were asked to provide diagnostic and admission information for the patient. They were also asked whether they believed the patient to have palliative care needs according to a standardised definition (a broad and inclusive definition of palliative care was purposively selected to maximise the potential for patient identification),115 whether they would be surprised if the patient died within 12 months; about the appropriateness of the admission to hospital; and whether prognostic discussions had taken place. When possible the member of the nursing staff was the designated ‘named nurse’ for the patient and the member of the medical staff was the junior (Foundation Year 1 and 2) or senior (Specialist Trainee year 1 and year 2) house officer or the registrar.

3. Patient-/consultee-completed questionnaires comprising sociodemographic information; a service use questionnaire developed for use with a palliative care population (Gott M, Barnes S, Payne S, Seamark D, Small N. Department of Health, 2007, unpublished report); and the Sheffield Profile for Assessment and Referral for Care (SPARC). 116 SPARC is a validated holistic self-assessment tool to identify patients who would benefit from palliative care input (see Appendix 4). It provides scores across a range of physical, psychological and social domains. In cases in which consultees participated, they were asked to answer questions as they believed that the person they were acting as consultee for would have done.

All data were collected by a team of 30 researchers with previous experience in health-care research as either an academic or a clinician. Data from hospital case notes were collected by researchers with a clinical background in medicine or nursing. All researchers attended a full-day training session prior to the study commencing, which provided training in approaching patients/staff, the correct use of data collection tools and procedures for problem situations.

Data analysis

All data were recorded onto anonymised paper proformas and were subsequently transferred onto a SPSS database version 20 (SPSS Inc., Chicago, IL, USA) for data cleaning and analysis, with the guidance of the project statistician (CP). Descriptive analyses were used to describe the data from all sources.

Cohen’s kappa measure of chance-corrected agreement was used to assess agreement between sources regarding identification of patients with palliative care needs and appropriateness of admission to hospital. Logistic regression analyses were used to explore the effects of a range of predictor variables on various outcomes.

Economic analysis methods

Two palliative care consultants (BN and MB) undertook a post hoc assessment of appropriateness of admission to hospital for patients who had been identified with palliative care needs according to GSF criteria. They reviewed the survey data collected from the case notes of these patients and made a decision whether the admission was ‘potentially avoidable’ or ‘unavoidable’ or whether there were ‘insufficient data to make a decision’. For those patients whose admission was classed as potentially avoidable, an alternative place of care was suggested by the consultants.

An estimated cost was then attached to each of the admissions identified by the consultants as potentially avoidable. The cost of each hospital admission was estimated using HRG codes. HRG codes are clinically meaningful groupings of patient activity, based on both diagnoses and clinical procedures undertaken. Standard costs are assigned to each HRG code and these are used across the NHS in England to calculate the cost of a hospital admission. 117

Because of ethical restrictions, HRG codes for patients in the surveys could not be obtained retrospectively from the trusts involved. The Sheffield Teaching Hospitals coding team therefore undertook an ad hoc exercise to allocate HRG codes to each admission identified as potentially avoidable across both hospitals using the data from our survey. HRG codes and tariffs for 2010/11 were used.

Admissions for patients who remain in hospital beyond the expected upper length of stay for the HRG code (trim point) would normally be allocated an additional long-stay or excess bed-day payment. In the absence of length-of-stay data for our sample of patients, we were unable to cost for excess bed-days.

We then estimated the costs of the alternative places of care suggested by our consultants for those admissions deemed avoidable. The costs of alternative places of care were taken from published national sources, inflated to 2011 prices when necessary (see Table 11). The cost of nursing home care (£106 per day) was obtained from the Personal Social Services Research Unit’s Unit Costs of Health and Social Care 2010. 118 The cost of hospice care (£325 per day) was obtained from research commissioned by the National Audit Office. 119 The cost of home care (£50 per day) was derived from a King’s Fund report,82 which estimated the cost of home care in the last 8 weeks of life. This cost included the following services: GPs, district nursing, Marie Curie and Macmillan nurses, ambulance journeys, hospice at home and hospice (inpatient) and equipment. An average daily cost was calculated from the 8-week figure cited in the report.

These studies all assumed a broad societal perspective120 to take account of costs irrespective of funding source. Although we would have also liked to include informal carer costs and indirect costs – those incurred as a result of lost productivity – in our calculations, this was not possible because of a lack of data. As a point of comparison, we explored a more restrictive cost perspective. This was the NHS and personal social services (PSS) perspective, which considers only those costs that fall within the remit of these two organisations. To do this we used the costs cited in a previous study,121 which indicated that only 43% of nursing home costs and 44% of hospice costs were funded by the NHS or PSS. Costs were inflated to the 2011 price year when necessary.

Survey response rate

A total of 1359 inpatients were eligible for inclusion in the survey (1009 patients in Sheffield and 350 patients in Lancaster). Of the total eligible patient population, 654 (48.1%) patients agreed to participate in the study of whom 616 patients consented for themselves and 38 consented through a consultee. Patient response rates were similar for the two hospitals (SNGH 46.9%, RLI 52.9%). Details of patient recruitment at the two participating hospitals are provided in Figure 3.

FIGURE 3.

Details of patient recruitment at the two participating hospitals.

Of the 654 consenting patients/consultees, complete data sets are available for 514 patients (final response rate 37.8%). A complete data set is defined as containing a case note review and a questionnaire completed by a member of either the medical staff or the nursing staff, but not necessarily both. The analyses presented in this section relate to the 514 patients with complete data sets.

Results of the case note review

Of the 514 patients, just over one-third (n = 185, 36.0%) met one or more of the GSF prognostic indicator criteria for palliative care need. Of the patients identified with palliative care needs according to GSF criteria, 53.8% were female and the median age was 78 years, with an age range of 20–103 years. The majority of these patients were aged ≥ 65 years (77.8%), with a considerable proportion aged ≥ 85 years (23.2%) (Figure 4). Table 4 shows demographic information for the sample of 185 patients with palliative care needs according to GSF criteria.

FIGURE 4.

Age range of patients with palliative care needs according to GSF criteria (n = 181, no age given for four patients).

The majority of patients (70.8%) met only one GSF criterion for palliative care need; however, just under one-third (29.2%) met two or more criteria (see Table 5). Figure 5 shows the breakdown of GSF prognostic indicators amongst the patient sample.

The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Heart disease (20.5%), cancer (19.5%), COPD (18.4%) and dementia (17.8%) were the next most common GSF criteria, and were roughly equal in prevalence. Other indicators, including stroke, renal disease and Parkinson’s disease, were less common.

FIGURE 5.

Numbers of patients meeting each of the GSF prognostic indicators for palliative care need (n = 185). a, Other life-limiting illnesses included cystic fibrosis, Huntington’s disease, asbestosis, etc.

Table 5 provides admission and diagnostic information for the patient group. Reason for admission to hospital was ascertained in all but five patients (included in the ‘other’ group). The most common reasons for admission were falls/confusion/general frailty (14.6%), complications relating to cancer (13.0%) and respiratory disease or exacerbation (13.0%). Patients had a median of two comorbid conditions, with over one-third of patients having three or more comorbidities. In the 12 months before the survey, patients had a median of one previous hospital admission and spent a mean of 42 days (lower quartile = 1.8, upper quartile = 53.0) in hospital. For the majority of patients (65.9%) there was no evidence of the adoption of a palliative care approach. Around one-third (28.6%) of patients had a do not attempt resuscitation (DNAR) order in place, but only a small number (8.1%) had been referred to specialist palliative care services.

Results of medical and nursing staff assessment of palliative care need

Medical and nursing staff were asked whether they believed patients to have palliative care needs according to the Canadian Palliative Care Association 1997 definition. 115 Nurse questionnaires were completed for 473 patients; of these, nurses stated that 84 (17.8%) had palliative care needs. However, data from patients’ hospital case notes indicated that 174 (36.8%) of these 473 patients were identified as having palliative care needs according to GSF criteria (Table 6). Staff were also asked, ‘would you be surprised if this patient died (1) during this admission and (2) in the next 12 months?’ Nursing staff would not have been surprised if the patient died during the current admission in 74 (15.6%) cases and in the next 12 months in 180 (38.1%) cases. Medical staff questionnaires were completed for 297 patients; of these, doctors stated that 46 (15.5%) had palliative care needs, whereas using the GSF criteria 108 (36.4%) were identified with palliative care needs (see Table 6). Medical staff would not have been surprised if the patient died during the current admission in 50 (16.8%) cases and in the next 12 months in 123 (41.4%) cases.

Table 6 shows the level of agreement between medical staff, nursing staff and the GSF regarding the identification of patients with palliative care needs. Cohen’s kappa indicates a poor agreement between nursing staff and the GSF (n = 473, kappa = 0.22) in terms of identifying patients with palliative care needs. Agreement between medical staff and the GSF was also poor (n = 297, kappa = 0.25). Agreement between medical staff and nursing staff regarding which patients had palliative care needs was moderate (n = 256, kappa = 0.42). 122

Results of patient self-report data

Self-report questionnaires were completed for all 185 patients identified with palliative care needs according to GSF criteria. Questionnaires were completed by patients in 162 cases (87.6%) and by consultees in 23 cases (12.4%). The SPARC questionnaire provides a self-assessment of palliative care needs and scores variables from 0 to 3; a score of 3 on any variable indicates that the patient merits ‘immediate attention by the attending clinician’. 116 The SPARC questionnaire contains variables in six domains: physical symptoms, psychological symptoms, religious and spiritual issues, independence and activity, family and social issues and treatment issues. The majority of patients (n = 154, 83.2%) scored 3 on at least one variable in one of the six domains. Physical symptoms were most troublesome with 74.6% of patients scoring 3 on one or more variable in this domain. Patients also reported high levels of psychological symptoms (43.2%) but fewer problems relating to the other domains (Figure 6). Consensus between patients and medical staff (kappa = 0.20, n = 107) and between patients and nursing staff (kappa = 0.20, n = 173) was poor regarding identification of palliative care need when a SPARC score of 3 on one or more variable was used as a proxy for self-assessed palliative care need.

FIGURE 6.

Sheffield Profile for Assessment and Referral for Care questionnaire responses for patients with palliative care needs according to GSF criteria (n = 185).

Predictors of symptom burden amongst patients with palliative care needs

Binary logistic regression was performed to assess whether known diagnostic factors (GSF indicator, number of comorbidities) and/or demographic factors (age, sex, living arrangements) were able to predict symptom burden as measured by the SPARC questionnaire. Only 183 of the 185 patients were included in these analyses as two patients had insufficient case note data. As only two SPARC variables included substantial numbers of patients (psychological and physical symptoms; see Figure 6), other SPARC variables were removed as outcome measures from the logistic regression. The two outcome variables indicating symptom burden (physical and psychological symptoms) were entered as binary outcome measures indicating ‘high symptom burden’ (score of 3 on one or more variable) compared with ‘low symptom burden’ (no scores of 3 on any variables) in the logistic regression.

Each predictor variable was entered singly and not adjusted for other variables. The results of these analyses are presented in Table 7. The results indicate that patients diagnosed with heart disease were less likely than those with other diagnoses to have a high physical symptom burden [odds ratio (OR) 0.42]. The results also indicate that patients with dementia were more likely to have a high physical symptom burden (OR 3.94) and a high psychological symptom burden (OR 2.88). Female sex was a significant predictor of psychological burden (OR 2.00), and having three or more comorbidities was also a significant predictor of psychological burden (OR 3.97). Neither age nor living arrangements were significant predictors of symptom burden.

Older patients aged ≥ 85 years

A key focus of this study was the care provided to older people at the end of life in hospital. Therefore, additional analyses were undertaken on patients who participated in the survey who were aged ≥ 85 years. Of the 654 patients who agreed to participate in the survey, 127 (19.4%) were aged ≥ 85 years. After data cleaning, complete data sets were available for 110 patients aged ≥ 85 years. Table 8 shows demographic and admission data for these 110 patients. The majority were female and the median age was 89 years. Most of the patients lived alone and all were of white ethnic origin. Reason for admission to hospital was obtained from hospital case notes. The most common reason for admission (25.5%) was general frailty (including falls, confusion or general deterioration).

The hospital case notes of the patients aged ≥ 85 years were examined for evidence of palliative care need according to GSF prognostic indicator criteria. Forty-four (40.0%) patients met one or more criteria for palliative care need. Frailty (16.4%) and dementia (13.6%) were the most common criteria met (Figure 7). The majority of these patients met just one GSF criterion (n = 30, 68.2%), with smaller numbers meeting two (n = 11, 25.0%) or three (n = 3, 6.8%) criteria.

FIGURE 7.

Gold Standards Framework indicators met by patients aged ≥ 85 years (n = 44).

Hospital case notes were also examined for indicators of a transition to a palliative care approach. Half of the patients (50%) who met GSF criteria for palliative care need met one or more indicator of transition to palliative care. Half of the patients had a DNAR order in place; however, there was documentation of discussion with the patient and/or family regarding the DNAR order in only 6 cases (13.6%). Even amongst patients who did not meet GSF criteria, a reasonable number (16.7%) had a DNAR order in place. Only two patients of the 44 who met GSF criteria had been referred to specialist palliative care services; however, one patient was referred to specialist palliative care despite not meeting any GSF criteria. The only patients for whom advanced care plans (1.5%) or use of syringe drivers (3.0%) had been documented did not meet GSF criteria for palliative care need.

Predictors of transitions to palliative care

Analyses relating to transitions to palliative care were undertaken on 183 of the patients with palliative care needs according to GSF criteria (two patients were excluded from the analyses because of missing data on key transition variables). Of the 183 patients, 61 (33.3%) showed evidence of transition to a palliative care approach by meeting one or more indicator of adoption of a palliative care approach (Table 9). Of these, 43 patients met just one indicator, 14 patients met two indicators and four patients met three indicators.

A logistic regression was performed to assess whether various diagnostic and demographic factors were able to predict a transition to palliative care. Data were recorded for five indicators of transition to palliative care. As only one individual indicator of transition to palliative care included substantial numbers of patients (DNAR; see Table 9), a single binary outcome indicating any evidence of a transition to palliative care compared with no evidence was used for the logistic regression. Among the GSF diagnostic indicators, no patients had motor neurone disease and the frequencies for Parkinson’s disease and multiple sclerosis were very low; therefore, these last two indicators were combined with ‘other life-limiting conditions’ to form a combined indicator.

Table 10 shows that, in the unadjusted logistic regression, the significant predictors of a transition to palliative care were the GSF indicators for cancer, heart disease and stroke, together with age and living in a residential or nursing care home. The table also shows the final multivariate predictive model, which comprised three GSF diagnostic indicators (cancer, dementia, stroke) together with age. This model correctly predicted 74% of outcomes and could not be improved significantly by adding the other GSF indicators, number of comorbidities, sex or living arrangements. In this model, the odds of a transition to palliative care were multiplied by an estimated 5.1 for patients with a cancer diagnosis, by 8.0 for a stroke diagnosis and by 2.6 for a dementia diagnosis. The odds were also increased by an estimated 3% for every additional year of age (with no evidence of significant non-linearity in this relationship).

Potentially avoidable admissions to hospital for patients with palliative care needs

Appropriateness of admission assessments were undertaken for 208 patients; this was the total number of patients who were identified with palliative care needs according to GSF criteria and for whom complete case data were available (no medical/nursing data or patient data were required for this stage of the analysis; this accounts for the slightly larger sample size than that described in Results of the case note review). The admissions of 14 (6.7%) patients were classified by our two palliative medicine consultants as potentially avoidable. Double coding of a random sample of 15% of the notes indicated high levels of agreement between the consultants, using the kappa measure of chance-corrected agreement (kappa = 0.792, n = 30).

Of the 14 patients whose admission was assessed as potentially avoidable, seven were male and seven were female. The median age of the patients was 84 years (range 75–97 years). Cancer was the primary diagnosis for 6 out of the 14 patients; three patients had a primary diagnosis of stroke; and the other patients had a primary diagnosis of encephalopathy, end-stage renal failure, Alzheimer’s disease, general frailty or hypertension. Half of the patients lived in nursing or residential care. Of the remaining patients, 50% lived alone and 50% cohabited. Most patients (n = 12) were admitted to hospital ‘out of hours’ (outside 0900–1700, Monday–Friday). Reasons for admission to hospital were confusion/general deterioration (n = 5), symptom control (n = 3), fall (n = 2), stroke (n = 2), urinary tract infection (n = 1) and intra-abdominal catastrophe (n = 1).

The mean cost of a potentially avoidable admission was estimated to be £2595 (range £451–£5363), based on the HRG tariffs assigned to each admission by the Sheffield Teaching Hospitals coding team. The distribution of costs is shown in Figure 8. The costs fall into three broad groups: < £1000 (n = 4), between £1000 and £4000 (n = 5) and > £4000 (n = 5). We can therefore estimate that the total potentially avoidable hospital cost from potentially avoidable admissions for the period of the survey was £36,334. The mean length of stay, based on the HRG codes assigned to these admissions, was 16.7 days.

FIGURE 8.

Distribution of estimated costs of potentially avoidable admissions.

The most commonly recommended alternative place of care for patients was a nursing home (n = 10). In addition, it was considered that three patients could have been appropriately cared for in a hospice, and one in their own home. We used the same estimate of average length of stay in these alternative places of care as that estimated for length of hospital stay (16.7 days). The overall cost of alternative places of care based on this same length of stay was estimated to be £34,807 (Table 11).

Taking into account the avoided hospital costs and the cost of providing support in alternative locations, the estimated economic impact is a potential cost saving of £1527 across both hospitals for the period of the survey. There were 1359 inpatients in the two hospitals over the survey period. This accounted for 0.9% of the total admissions over the year. Assuming that the proportion of potentially avoidable admissions identified during the survey period is indicative of the number who would be identified over the course of a year, the potential annual cost saving for the two hospitals can be estimated at just under £180,000. If the cost perspective is restricted to NHS and PSS costs, only the cost of avoided hospital admissions remains unchanged; the cost of alternative care provision falls to £15,141. Based on a NHS and PSS cost perspective, then, the potential economic impact is predicted to be a cost saving of £21,193 for the census period or £2.5M per annum for the two hospitals.

Extent of palliative care need

Our results indicate that, according to the GSF prognostic indicator guide, over one-third of hospital inpatients (36.0%) meet the criteria for palliative care need. This figure is substantially higher than other estimates of palliative care need in the acute hospital population. A French survey in 1999 reported that only 13% of total hospital beds were occupied by palliative care patients. 123 In a census undertaken in 2001, Gott and colleagues124 reported that 23% of hospital inpatients were identified as having palliative care needs. A more recent study in 201122 reported that just 9.4% of hospital patients in Belgium were identified as having palliative care needs (although this study excluded intensive care units and palliative care units). All of these studies used the subjective judgement of generalist medical and nursing staff to identify patients with palliative care need, rather than an objective measure based on diagnostic criteria, as used in this study. Our results show that, when using a systematic and objective measure, the percentage of patients with identified needs is much higher and represents a substantial proportion of the inpatient population.

Lack of consensus between medical staff, nursing staff and Gold Standards Framework prognostic indicators

One of the most significant findings from this survey is the lack of concordance between medical staff, nursing staff and GSF prognostic indicators regarding the identification of patients with palliative care needs. Although it must be acknowledged that medical and nursing staff were using a different definition of palliative care need than that in the GSF, the Canadian definition was selected on the basis that it is one of the broadest and most inclusive definitions, and is not restricted to particular diagnostic groups. Despite this, medical and nursing staff identified far fewer patients with palliative care needs than the GSF (15.5% and 17.4%, respectively, vs. 36.0%). Significantly, for the majority of patients who met GSF criteria for palliative care need (65.9%), there was no evidence of adoption of a palliative care approach.

Even amongst patients who were expected to die within 12 months, recognition of palliative care need was inconsistent. Medical and nursing staff judged that less than half of the patients they expected to die within 12 months had palliative care needs. This is despite the ‘12 months’ question constituting a key component of GSF prognostication and being advocated in policy such as in the End of Life Care Strategy for England. 5 Data from the SPARC tool for self-assessment of palliative care need indicate that, of the 185 patients identified with palliative care needs according to GSF criteria, the majority (83.2%) had problems that ‘warranted immediate attention by an attending clinician’. Despite this, agreement between medical and nursing staff and patients was very poor regarding which patients had palliative care needs.

The identification of patients with palliative care needs presents a recognised challenge. 2,89,114 Recent policy5 recommends that health professionals should be trained to identify patients approaching the end of life and to recognise when patients are dying. However, there is a lack of consensus regarding how these patients should be identified and this has significant implications for quality of patient care. 79,83,125,126

The challenge in agreeing a consensus of definition and identification of palliative care needs has additional implications for generalist palliative care providers. Recent policy and research have sought to engage more effectively with the generalist provider;125,126 however, our survey results show that many generalists are struggling to identify patients who might benefit from palliative care input. Generalist palliative care is increasingly central to hospital-based palliative care provision. Therefore, it is crucial that generalists are provided with opportunities for greater partnership working with specialist palliative care colleagues. More generally, there is also a clear need for a consensus of definition and for standardised validated criteria for the identification of patients with palliative care needs.

Older people with palliative care needs

Data from the survey suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. Although specialist palliative care uptake is low amongst the frail elderly, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care and services provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework. Given recent concerns about the level of care provided to older people within the acute hospital setting,127,128 priority should be given to considering ways of improving the care that older people receive at the end of life. Improving generalist palliative care to support older patients in the community, improving recognition of palliative care needs amongst older frail patients and implementing models of palliative care that are appropriate for older patients at the end of life are key priorities that need to be addressed.

Extent of transitions to palliative care

Although UK policy5 advocates an early and phased transition to a palliative care approach for any patient thought to be within the last 12 months of life, our findings indicate that only one-third (33.3%) of patients with identified palliative care needs showed evidence of any such transition. Moreover, the majority of these were identified as having made a transition by virtue of having a DNAR order in place and, although a DNAR order prevents cardiopulmonary resuscitation in the event of cardiac and/or pulmonary arrest, it does not presuppose that any other treatments or interventions that the patient receives will be palliative in intent.

The odds of a transition to palliative care were multiplied by an estimated 5.1 for patients with a cancer diagnosis, by 8.0 for a stroke diagnosis and by 2.6 for a dementia diagnosis. It is well recognised that patients with a cancer diagnosis are more likely to receive specialist palliative care than patients with non-malignant disease. 5 Our results are therefore interesting in indicating that patients with a diagnosis of stroke are most likely to have made a transition to palliative care. A number of policy and educational factors may have contributed to this finding. These include the Royal College of Physicians’ guidelines for stroke129 and the DoH’s Stroke-Specific Educational Framework,130 which underlines the importance of assessment and management of end-of-life care. In the case of the dementia finding it is possible to speculate on the impact of recent recommendations that NHS hospital policy should apply the principles of palliative care to patients with dementia. 26,131

However, National Institute for Health and Care Excellence (NICE)/Social Care Institute for Excellence guidelines26 identify that cardiopulmonary resuscitation may not be effective in the case of cardiopulmonary arrest for people with severe dementia. These data may therefore be an artefact of NICE guidance as opposed to a genuine shift towards appropriate palliative transitions for people with dementia.

Guidance from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing132 indicates that, regardless of diagnosis, advance care planning should occur alongside the implementation of a DNAR order. Our data indicate that this is not the case in acute hospitals in England. Indeed, no documented evidence of advance care planning was found for this sample of 183 patients with palliative care needs according to GSF criteria. Various barriers to advance care planning have been identified in the literature103,133 and advanced communications skills training programmes such as Connected have been initiated across some clinical settings (mandatory in oncology settings), including acute hospitals, to address these. Our findings lend weight to the need to address the gap between policy promotion of advance care planning and current practice. They also indicate a need to ensure that any such discussions are recorded in clinical notes, both to facilitate clinical decision-making and continuity of care and to facilitate future audit and research in this area.

There are no recognised definitions of what constitutes a ‘transition to palliative care’, despite this concept being widely used in UK policy. 5 Capturing the timing and presence of a shift in care regime of this nature is inherently problematic, particularly given that there is evidence to suggest that end-of-life care discussions between clinical teams and patients and their families go unrecorded. 134 In addition, notions of phased transitions, incorporating elements of both palliative care and curative care, can further complicate the identification of this shift. In the absence of any formal criteria for identifying a transition to palliative care, we defined a transition on the basis of findings from our earlier qualitative research phase with health professionals. However, it is recognised that the list of indicators used in this study may not be comprehensive and may require validation, and this represents a limitation of this study.

‘I don’t want no shilly shallying’: ‘open’ awareness

Some participants did seem fully aware of their prognosis and acknowledged that they might be approaching the end of their life. For one of these participants, Beverley (all names are pseudonyms), the experience of developing cancer 40 years earlier when she was in her 30s, and recovering from it, had the effect of reducing her fear of dying from her present illness, because she already believed that she had been granted additional life – ‘every day was a bonus’. This influenced the approach that she took when asking for information from her doctor:

I’d rather they just said to me ‘we don’t know how long you’ve got, but . . .’. And I would say ‘well, can you give me what normally is the length of time, you know, I know you haven’t got a crystal ball’.

Beverley was actively trying to open up a conversation with her doctors about her future, without looking for false certainty (the elusive ‘crystal ball’). Her awareness context was radically different to that during the first time that she had been treated for cancer, when ‘they didn’t tell you anything. All I was told was that it was something nasty.’

Another participant, Paul, a 64-year-old man living with heart disease and severe COPD, was similarly aware of his limited life expectancy. He had signed a DNAR order – evidence that some discussion of future deterioration had occurred. To indicate to his doctor that he preferred a situation of open awareness, Paul encouraged his doctor to be ‘straight’ with him:

[The doctor] says to me, ‘I’m glad you’re upfront about it’, so I said, ‘well, it’s daft lying isn’t it’. I said, ‘well, I want you to do the same, if you think I’ve got about 6 months to live, don’t hang back’.

Here we infer that Paul is giving his doctor permission to engage in open and honest communication. According to his son, also his live-in carer, Paul had been admitted to hospital eight or nine times in the past 2 years for exacerbation of his COPD. Paul and his son both openly acknowledge that his disease is life-limiting:

Paul: [The doctor] said ‘it can’t be cured, you know that don’t you’ and I said ‘well, aye’.

Son: They’ve not gone into details, like, [that the attacks] are going to get more frequent or they’re going to get worse, but they’ve said, you know, it’s terminal. He’s come to terms with that, he does know, he’s not shirking, he knows what’s what.

The use of the term ‘shirking’ here is suggestive of a moral imperative to take responsibility for one’s own awareness context and, therefore, one’s own dying. In spite of Paul’s request for ‘straight’ talking, his son’s comment about a ‘lack of details’ reveals that they were still lacking information about what they could expect from the disease trajectory. This is something that, had Paul been referred to specialist palliative care services during one of his many hospital admissions, would have been discussed. One of the reasons given by Paul and his son for not wanting ‘no shilly shallying’ was that they had recently experienced the death of Paul’s other son.

In both of these accounts the participant entered a context of ‘open’ awareness only because he or she gave explicit indication to the doctor that he or she wanted to know his or her prognosis.

‘I’ll bounce back’: reluctance to face the future

Other participants we identify as displaying more reluctance in accepting the life-limiting nature of their condition. Although some participants made no mention of conversations with health professionals about their prognosis, others acknowledged conversations but they appeared not to have fully internalised the information communicated to them. This latter scenario is what Timmermans155 classified as a ‘context of uncertain open awareness’.

Michael, aged 64 years, who was interviewed with his wife, had experienced four admissions to hospital in the last year for COPD exacerbations resulting from his cancer. Together, Michael and his wife gave their joint account of the multiple hospital visits, the extensive treatments undertaken, the complications resulting from bacterial infections while in hospital and the contact that they had with health-care staff in the different hospital departments. Despite being told by his doctor that ‘you’re not going to get any better’, both Michael and his wife sounded hopeful that his health had finally stabilised:

Wife: He’s slowly getting a little bit stronger and I’m not as anxious because I can see we’re on that plateau and that’s a good place to be.

And later:

Wife: Because of the damage the cancer had left in his lungs we were thrown into a terrible year, so we haven’t had . . . we’ve never had a plateau, we’ve always been on that, well, turbulent sea, we’ve been tossed around in it. But we’re . . .

Michael: We know where we are at the moment [. . .] I know that I’ve got to take my medication every morning and I have to take it every night and that keeps me on an even keel.

Talk of a ‘plateau’ and an ‘even keel’ indicates a belief that Michael’s condition had stabilised, pushing to the background thoughts about the inevitable progression of his symptoms. To an outside observer, his compounding conditions, and the chronic nature of his COPD, make their expectations seem unrealistic. However, in the context of long hospital stays and repeated admissions it is evident that ‘recovery’ becomes a relative term and that patients can read hopeful signs when doctors’ indications are to the contrary.

Another participant, John, who had lung cancer, could also be identified as being in a context of ‘uncertain open awareness’. Reflecting on being told of his prognosis by his surgeon, he said: ‘I don’t think he held back, he just told me how it was and that’s accepting it. It’s just how it’s got to be.’

John was the only participant who made reference to having been referred to a specialist palliative care professional (a community Macmillan nurse). However, he said he didn’t really rate the service because the nurse had attempted to contact him only twice. Later in the interview he said he ‘could have done with talking to somebody’ because he felt he was ‘going through it all on his own’: ‘[I could have benefited from] a bit more info, a bit more care.’

John clearly wanted more opportunities to talk through his fears. Later in the interview he signalled that he was still hopeful of a recovery. Although his doctor ‘hadn’t held back’ in his truth-telling, John still did not want to abandon his residual hope that he would recover, or that things would get back to normal: ‘It were a close shave, a couple of close shaves for me [. . .] but I’ll bounce back.’

Other participants we identify as being in a state of conditional awareness because of their avoidance of specific questions about the future. One younger participant, Clare, who had been left tetraplegic following a road traffic accident, commented: ‘a lot of the things you don’t really want to ask you avoid, you avoid it’.

Despite Clare’s noted dependence on the internet for information about her condition and insistence that ‘there’s a lot more information out there than what you’re told by your immediate consultants’, she still wanted to ‘avoid’ discussions about the future so that she could continue to believe that she could ‘do everything that I wanted to do in the first place’. People who have severe spinal cord injuries can often experience respiratory problems, which can result in ventilator dependency during a severe episode. 156 Once on a ventilator there is a chance of not being able to breathe independently again. Advance care planning in such circumstances can enable people to make decisions in advance about such interventions.

For some participants there was a reluctance to accept that future curative treatment was likely to be ineffective. They expressed an understandable ambivalence towards fully accepting the life-limiting nature of their condition and towards making the types of preparations that a palliative approach to care would have encouraged.

‘As long as I can cope, I’m not interested’: ‘closed’ awareness

Some participants did not seem to be aware of their prognosis at all in that they did not mention any discussions with health-care professionals about expected future deterioration in their health and reported no desire for information. These patients were all aged ≥ 85 years. Some registered a reluctance to ask questions of health-care professionals, either in primary care or in secondary care. As one woman, aged 90 years, commented:

I’m not bothered, I don’t care. As long as they know what’s wrong with me [. . .] they can tell you all these things and frighten the living daylights but if you don’t know what’s wrong and you’re just quite happy to lay there and let them do their worst. That’s all you can do really, isn’t it?

This woman’s comments reveal her preference for doctors, with their technical expertise, to make decisions on her behalf. This has been termed the ‘other culture’ perspective, stemming from trust being placed in others to make decisions on the person’s behalf. 157,158 If a person is reluctant to ask questions or to hear bad news, then this begs the question of how far health-care professionals should persist in giving this information.

Other participants’ lack of awareness of the life-limiting nature of their condition could be detected in the way that they spoke about their condition. Liz, aged 96 years, living with various comorbidities, said that she thought she had been ‘cured’ for now:

They’re going to operate if it gets desperate but not otherwise [. . .] the surgeon said if they operated I should probably be bedfast so it was up to me so I turned it down and said I’d wait [. . .]. They put it all down to old age [laughing].

Liz’s comments suggest that it was presented as her choice whether or not to opt for more surgery. She declined the intervention because she valued her mobility over her longevity. However, the disclaimer – ‘if it gets desperate’ – indicates a reluctance to let go altogether of the possibility of further medical interventions at some future point, if they might ‘add time’. 159 Her comments indicate her lack of awareness that she is nearing the end of her life. The reference she makes to her age suggests that, in her mind, it was a factor influencing the doctors’ diagnosis of her symptoms and their advice against opting for further treatment, rather than a factor influencing her own decision to turn down further medical and nursing interventions.

Another participant, Judith, aged 85 years, who had a new stent put in her heart during her recent hospital admission, spoke of her age as a factor influencing her own decisions about opting for treatment in the future:

Well, I’ve still got angina right, but as for the other [heart disease], no it should be all right because they joked about it and said ‘oh, you’ll be all right now for another 10 years’ – what! I’ll be 96 then [laughing]. Too old. I shan’t bother.

Judith distinguished between the age at which she is now – when she opted for a new stent to prolong her life – and her age in 10 years time – when she predicts she will consider herself ‘too old’ to consider further treatment. The tension between awareness of old age and yet seeming lack of awareness of one’s own dying was a common theme.

In general terms, although these participants showed an awareness of the influence of old age on decisions about treatment, and on their expectations of their health, this did not signal a concomitant awareness of the way that their own old age brought them closer to death. In this way, age was a factor that might have made their impending deaths ‘timely’ or ‘natural’ to others, but not to them, and not right now.

Data collection

Data queries were sent to Information Services at the two participating hospitals requesting lists of inpatients present in the two hospitals during day 1 of their respective survey periods (10 May 2010 for SNGH and 15 November 2010 for RLI) and who had died by that date 1 year later. Data from Information Services were generated from locally managed databases that derive information from hospital patient administration systems. Data returned from Information Services comprised the following: NHS number, sex, date of birth, date of death, HRG code for survey admission and length of stay (days) for survey admission. HRG codes are clinically meaningful groupings of patient activity, based on both diagnoses and clinical procedures undertaken. HRG codes are allocated locally by ‘coding teams’ whose remit is to generate and allocate the most appropriate code for each admission. Standard costs are assigned to each HRG and these are used across the NHS in England to calculate the cost of a hospital admission and generate reimbursement through a system known as payment by results. 117

Patient lists generated by Information Services were submitted to the medical records department of the relevant hospital and the complete hospital case notes of each patient on the list were recalled. Case notes were reviewed by two researchers (senior nurse academics) and data were recorded onto paper proformas. The range of data collected from hospital case notes is shown in Box 3.

Recording of cause of death and place of death data in hospital case notes was variable and not available for all patients. Therefore, these data were also collected using Office for National Statistics Hospital Episode Statistics (ONS-HES)-linked mortality data, from the Medical Research Information Service (MRIS) of the NHS Information Centre for Health and Social Care. Patient lists from the two hospitals were uploaded via a secure data-sharing system to MRIS. MRIS undertook data matching and lists were returned for successfully matched patients with data on the following variables: place of death, cause of death, underlying cause of death (up to four iterations) and coroner’s verdict when an inquest was held.

Appropriateness of admission to hospital

Data collected from hospital case notes and the MRIS were reviewed by two palliative medicine consultants (BN and MB) to assess appropriateness of admission to hospital for the survey admission. Consultants reviewed the notes from the hospital where they worked, as knowledge of local service provision and organisation was considered critical for informing decision-making. Data collected from case notes and the MRIS were considered in addition to knowledge of local services and a decision was made whether the admission was ‘appropriate’, ‘potentially avoidable’ or ‘insufficient data to make a decision’. An ‘appropriate admission’ was defined as an admission that was necessary because of clinical need, taking into account the patient’s circumstances and the availability of local community services at the time of the admission. For admissions deemed potentially avoidable, an alternative to hospital admission was suggested. To ensure consistency in clinical decision-making between the two consultants, they double-reviewed a random sample of 10% of the notes. The level of agreement between the clinicians was assessed using a Cohen’s kappa statistic.

Data analysis

All data were recorded onto paper proformas and entered onto an SPSS database. For each of the hospital admissions identified by the consultants as potentially avoidable, the cost of the admission was calculated using the assigned HRG code. HRG codes and tariffs for 2010/11176 were used except in three cases in which the code was not identifiable and the code and tariff for 2011/12 were used. 117 For patients whose hospital length of stay exceeded the expected upper length of stay for the HRG (trim point), an additional long-stay or excess bed-day payment was added. This was derived by multiplying the per-day long-stay payment for the relevant HRG code by the number of days that the hospital spell exceeded the HRG trim point.

The costs of the alternative places of care suggested by our consultants were estimated, based on costs taken from published national sources and inflated to 2011 prices when necessary (Table 13). The cost of nursing home care was obtained from the Personal and Social Service Research Unit’s Unit Costs of Health and Social Care 2010. 118 The cost of hospice care was obtained from research commissioned by the National Audit Office. 121 The cost of home care was derived from a King’s Fund report that estimated the cost of home care in the last 8 weeks of life. 82 This cost included the following services: GPs, district nursing, Marie Curie and Macmillan nurses, ambulance journeys, hospice at home and hospice (inpatient), and equipment. An average daily cost was calculated from the 8-week figure cited in the report.

Patient recruitment

At the SNGH, 302 patients who were present in the hospital on 10 May 2010 had subsequently died by 10 May 2011. In total, 279 sets of notes were reviewed; 23 sets of notes were not available despite repeated requests to the medical records department. At the RLI, 211 patients who were present in the hospital on the 15 November 2010 had subsequently died by 15 November 2011. In total, 205 sets of notes were reviewed; six sets of notes were not available. In total, notes were reviewed for 484 patients (response rate 94.3%). Data from the two hospital Information Services departments were returned for all 484 patients. ONS-HES-linked mortality data were returned for 480 patients; matching was not possible in four cases. For these four patients, cause and place of death data were retrieved from hospital case notes.

As the focus of this study was hospital admissions in patients with palliative care needs before death, cause of death was examined for all patients. Those patients who did not die from causes relating to chronic or life-limiting conditions (i.e. who died from accidental, or sudden unpredictable causes) were excluded. Only one patient was excluded, for whom a coroner’s verdict of suicide was recorded. The final analyses were therefore undertaken on 483 patients (Figure 9).

FIGURE 9.

Details of recruitment for hospital inpatients who died within 1 year of a hospital admission.

Demographic data for all patients

Table 14 presents demographic data for the total patient sample. Just over half of patients were female (52.2%) and the majority were of white ethnic origin (87.8%). Most of the patients lived independently at the time of their admission, either living alone or cohabiting (70.4%). Demographic information was poorly recorded in hospital case notes and there was a substantial amount of missing data relating to demographic variables.

The majority of patients died in hospital (65.6%). Although only 8.7% of patients died in their own home, this figure increased to 30% when including all patients who died in their usual place of residence (Table 15).

The most common cause of death was bronchopneumonia (27.5%), followed by cancer (18.2%). Cause of death is documented in Table 16.

To identify patients who had made a transition to a palliative care approach before death, case notes were explored for indicators of transition. Of the 483 patients who had died, just over half (n = 255, 52.8%) had evidence of a transition to a palliative care approach before death. Nearly half of the patients (47.4%) had a DNAR order in place in hospital before they died, 14.1% of patients had been placed on the LCP in hospital before death and 9.1% of patients had evidence of a referral to specialist palliative care services before death (Table 17).

Potentially avoidable admissions

Amongst the 483 patients included in the case note review, 35 (7.2%) admissions were classified by our two palliative medicine consultants as potentially avoidable. Double coding of a random sample of 10% of the notes indicated moderate levels of agreement between the consultants, using the kappa measure of chance-corrected agreement (kappa = 0.474, n = 52). 122 Of the potentially avoidable admissions, 21 (60.0%) were of male patients and 14 (40.0%) were of female patients. The majority lived in nursing or residential care at the time of their hospital admission (n = 26, 74.3%). Nine patients (25.7%) lived independently; of these, five (14.3%) lived alone and four (11.4%) cohabited.

The most commonly recommended alternative place of care was a nursing home (n = 28). In addition, it was considered that three patients could have been cared for in a hospice and four in their own home with appropriate support (Table 18).

Cause of death data were obtained from ONS-HES-linked mortality data and are shown in Table 19. The most common cause of death was bronchitis/pneumonia (n = 11), followed by frailty/old age (n = 8).

Economic impact of potentially avoidable admissions

The mean cost of a potentially avoidable admission was estimated to be £6068 (range £1571–£27,343). The mean length of stay of these admissions was 40.4 days. For 13 of the 35 admissions, the length of stay of the hospital spell exceeded the HRG trim point and costs relating to the excess bed-days were included. The total hospital cost for the 35 potentially avoidable admissions was £212,397.

The recommended alternative place of care for patients was a nursing home for 28 patients, a hospice for three patients and own home for four patients. Based on the mean length of stay of 40.4 days the overall cost of alternative places of care was estimated to be £167,110 (Table 20).

Taking into account the avoided hospital costs and the cost of providing support in alternative locations, the estimated economic impact is a potential cost saving of £45,287 across both hospitals for inpatients with palliative care needs on a single day. Data from the surveys detailed in Chapter 5 provide a snapshot of hospital activity and indicate that the total number of resident inpatients at the two hospitals was 1359 per day. This accounted for 0.9% of total admissions over the year. Assuming that 1359 inpatients is representative of the total number of patients in the hospital on any given day, the proportion of patients with palliative care needs is estimated to be 35.5%. Further, assuming that the proportion of potentially avoidable admissions identified during the survey period is indicative of the proportion who would be identified over the course of a year, the potential annual cost saving for the two hospitals can be estimated at just under £5.3M.

Response to project findings: ‘We’re sitting on a bit of a time bomb . . .’

In general, there was some noted surprise when those in attendance were informed of the finding that 36.0% of patients surveyed in hospital met one or more GSF prognostic indicator criteria – ‘I was expecting something a fraction of that’. Some participants said that this high figure showed that ‘we massively under-identify’ people with palliative care needs. The fact that the majority of patients identified in the hospital survey as having palliative care needs were frail, older people with multiple comorbidities and multiple previous admissions to hospital indicated to one respondent that ‘we are sitting on a bit of a time bomb’. Some health professionals acknowledged difficulties in recognising frail patients as having palliative care needs: ‘You recognise the people who have got “palliative terminal cancer”, but you don’t say “she’s the person who has got palliative frailty”.’

It was also recognised that frail older patients might not perceive their condition as necessitating a palliative care approach:

Does the patient perceive themselves as being palliative? . . . People who have terminal cancer can also see themselves as palliative but not so for, say, heart disease or chronic lung disease.

Participants were unsurprised that many patients with frailty were hospitalised:

We in general practice are much better at trying to keep people out of hospital who have palliative care related to cancer, but we’re not very good at keeping people out of hospital who have palliative care related to frailty, for instance.

The project finding that 6.7% of patients with palliative care needs were admitted to hospital ‘inappropriately’ was also commented on by some participants: ‘For me, if 36% have palliative care needs . . . that’s 36% that’s inappropriately in hospitals.’

It was acknowledged that hospital was unlikely to be the preferred place of death for many people, and that more should be done to provide alternative places of care: ‘That’s a huge scandal in this country that people die in hospital who shouldn’t do and against their wishes.’

Some participants were also concerned that, if the palliative care need was as significant as the findings from the project showed, then effectively and appropriately caring for these patients was likely to have resource implications: ‘Resources are more stringent now in the hospitals as well as in the community and people are stretched.’

As one participant emphasised, implementing good palliative care was time-consuming in that it involved negotiating complex family dynamics.

Development of local policy and strategy in response to the findings

A number of participants expressed a desire to see the results of the study communicated to health service managers so that local policy could be changed in accordance with the findings. There was a criticism from one participant that, all too often, health service managers were interested only in meeting targets, rather than in allowing doctors the time needed to meet patients’ palliative care needs: ‘The biggest barrier is time. Targets are what the managers are interested in.’

Both clinicians and health service managers were present during a meeting of the clinical management board of the Sheffield Teaching Hospitals NHS Foundation Trust. The impact of the study findings was seen as significant within the trust. The group endorsed the proposed development of a supportive and end-of-life care strategy group for commissioning, co-ordinating and educating as a result of hearing the findings of the study. This group is intended to provide an overall vision for supportive, palliative and end-of-life care within the trust. Key priorities for the group were discussed and included horizontal integration between directorates to aid identification and care; vertical integration between primary care and secondary care to aid timely discharge; and a focus on improving care at the end of life in Sheffield, both in hospital and at home. The strategy group will be led by two palliative medicine consultants (including BN) and will meet quarterly.

During the meeting with the Cutler Group of GPs there was some discussion, with representation from the CLRN, around the importance of the issues raised. In acknowledgement of the weight of the findings, the CLRN representative proposed considering the development of a local specialty group in palliative care to capitalise on research expertise and drive up the quality of local research. Members of our study steering group are currently involved in setting up this group.

In other focus groups it was hoped that a change in policy and strategy could reduce the ‘fragmentation’ in services, which hindered local palliative care provision. Some participants spoke about the need for a more ‘holistic’ and long-term approach to be taken to a patient’s care:

We’re used to seeing patients for that [acute] episode of care and [we need] to try and get people to think about what’s been happening in the run up to this admission and what needs to happen beyond, when the patient goes home.

There were also calls for a ‘culture change’ in terms of both shifting the definition of palliative care (to encompass more than just terminal or cancer care) and altering health professionals’ overall approach to caring for people at the end of life. A number of participants thought that education and training was the best way to achieve a change in attitudes and philosophy. The fact that medical and nursing staff identified far fewer patients as having palliative care needs than they did people who they thought were likely to die within the next 12 months indicated to one person that there was a ‘gap which needed to be bridged’. It was suggested that training health professionals to ask the ‘surprise’ question first and then cross-referencing that with prognostic indicators might be a step towards bridging this gap, and this could stem from a change in policy. Also, improving the skills of generalists, for whom ‘palliative care is our bread and butter’, was identified as a priority in terms of policy. Similarly, developing a policy that helped to ‘empower’ more inexperienced hospital doctors and nurses who lacked confidence in identifying patients who might be approaching the end of life was also suggested as a way of initiating a ‘culture change’ that would help to ‘get patients home, and quickly’. One initiative that was mentioned which could inform such a policy was to encourage consultants and registrars to identify palliative care patients to more junior doctors and nurses during their medical and surgical rounds. This policy was found to have had a positive effect when implemented at UHMBT.

Another participant spoke about some of the tools associated with end-of-life care initiatives, including palliative care registers and DNAR orders. Although GPs were instructed to use these in care homes, this did not necessarily effect a ‘culture change’:

We were left with the feeling of we know where they’re coming from, and we know why we’re being encouraged to do it in this way, but actually it’s just creating more paperwork rather than actually changing the mindset.

Other participants were also doubtful about whether tools such as the GSF and the LCP actually worked to instil ‘culture change’: ‘We do have GSF and LCP but at the end of the day that is a tick box, an aid memoire, it doesn’t address the core belief system.’

Developing local policy and strategy was identified as key to increasing palliative care education and training opportunities for health professionals in the local area. In addition, a review of the way in which the various end-of-life tools available – GSF, LCP, advance care planning – are used locally may help to assess their role in initiating the ‘culture change’ that was deemed essential for improving patient care. Indeed, at Westmorland General Hospital there was a view presented that if advance care planning could be made more ‘routine’ then patients could ‘actually become part of the discussion’ and it would enable more informed patient choice: ‘If we feel it is routine as practitioners, then you communicate it as routine and patients take it as such.’

Impact of the findings for service provision and commissioning

One participant felt that the findings from the project could help to inform GP commissioning in terms of highlighting issues resulting specifically from an ageing population:

That population graph you showed, that’s our world now and these are the people popping in and out of hospital sucking in resources that we shouldn’t be using. What you’re telling us is the information that backs up what we sort of know already but we’re looking at it from a financial point of view . . . we can take this information now and we match it with the management information and say ‘look here’s a plan’.

Given the project finding that 36.0% of hospital inpatients had palliative care needs and that only 8.1% had been referred to specialist palliative care services, some participants expressed the view that more specialist palliative care was needed: ‘Their expertise is needed and we need more of it.’

Others were concerned about the resource and staffing implications if more patients in hospital had palliative care needs than previously thought:

If we get better at identifying those with palliative care needs what impact does that have in the acute setting? [. . .] we’re going to have to have a different set of people working in the hospitals to do that.

Specialists are already squeezed and more referrals means more work for them.

Anybody who is identified as having palliative care needs ought to have involvement from the chaplaincy if they choose . . . I haven’t got the resources to respond to that.

Another issue raised was whether GPs could be more effective in preventing potentially avoidable admissions to hospital for people who were at the end of life. It was noted that GPs did not always use the GSF tool and put patients on a palliative care register when it would have been appropriate to do so. Similarly, out-of-hours GPs were reported to not routinely check patients’ notes for mention of the GSF and so this information was not then passed on to hospital staff: ‘They do have access to the [palliative care register] . . . it’s not that they’ve not got the information, it’s just that they’re not passing it on.’

One proposal for improving palliative care provision in line with the findings from the study was to nominate a GP within each practice who could be designated as a lead for palliative care, or frailty. Practice leads could then be responsible for encouraging other GPs within the practice to identify patients’ palliative care needs.

A further significant issue identified in relation to service provision and commissioning was the lack of alternative venues to hospital for patients whose requirements for care could not be met in their own homes:

Quite often we admit people who are frail elderly to hospital because we have no other option of keeping them safe in the community . . . they don’t want to be in hospital and we don’t want to put them in hospital but we’ve got absolutely no other option.

There was a call made by some for more community hospitals and community services, which, again, could help to keep people approaching the end of their life in the community: ‘What we’re all screaming about is that if we had some community-based facilities then we could avoid hospital admission almost at a stroke.’

There was also a demand for improved continuity of care for patients in residential and nursing care – ‘one practice looking after one nursing [home]’ – as a way of preventing hospital admissions. Further research in primary care that could help to identify what services could usefully be commissioned to help avoid unnecessary admissions was also requested. For one GP commissioner, the fact that ‘the last 6 months of life cost the NHS 50% of its budget’ meant that finding alternative places of care for the 36.0% of patients approaching the end of life, rather than high-cost hospital care, was a key priority. It was suggested that case studies should be accrued to provide evidence of the value of community hospitals and the non-acute services attached to them as an alternative to acute hospitals.

Suggestions for further research and comments on proposed research

There were some interesting suggestions for further research. One participant suggested that, as palliative care was closely related to the self-management of long-term conditions, there might be the potential to undertake research on the intersection of the two in the next Collaboration for Leadership in Applied Health Research (CLAHRC) application as a ‘natural follow on’ (Cutler Group). This suggestion is being taken forward by members of our steering group in collaboration with other colleagues from Sheffield University. Another participant suggested that some secondary analysis could be performed on the original data set using GPs rather than palliative care consultants to assess whether admissions for patients with palliative care needs were ‘potentially avoidable’ or not. This participant argued that GPs might make a different assessment given that they might have better knowledge of the community-based services available to patients. A third participant asked whether the data could be further analysed to assess the difference that specialist palliative care made to those patients who received it.

Participants were also asked to comment on a new intervention being developed by our research team that might support staff in initiating a transition to palliative care in inpatient settings. One participant thought that, if such an intervention encouraged individual patient management plans, it would be a good idea. It was suggested that such plans should be overseen by a lead clinician but with involvement from GPs, non-hospital specialists and other therapists. This participant said that there was too much ‘fragmentation’ in the NHS and not enough knowledge of the services available outside of hospitals.

Another participant also advised that any new intervention should be ‘based around the team’: ‘Lots of times people are working in silos and there is lots of fragmentation.’

What proportion of hospital inpatients have palliative care needs?

• Of the 514 patients in the sample, just over one-third (n = 185, 36.0%) met one or more of the GSF prognostic indicator criteria for palliative care need.

• The majority (77.8%) of these patients were aged ≥ 65 years, with a considerable proportion (23.2%) aged ≥ 85 years.

• The most common GSF prognostic indicator was frailty, with almost one-third of patients (27.0%) meeting this criteria. Heart disease (20.5%), cancer (19.5%), COPD (18.4%) and dementia (17.8%) were the next most common GSF criteria and were roughly equal in prevalence.

• Amongst the 185 patients meeting criteria for palliative care need, a self-completed needs assessment identified that physical symptoms were most troublesome, with 74.6% reporting a symptom that merited ‘immediate attention by the attending clinician’. Patients also reported high levels of psychological symptoms, with 43.2% of patients reporting a symptom that merited ‘immediate attention by the attending clinician’.

• When medical and nursing staff were asked to identify patients with palliative care needs according to a standardised definition, nursing staff identified 17.4% of patients surveyed whereas medical staff identified 15.5% of patients surveyed. Agreement between medical staff and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor (Cohen’s kappa = 0.22 and 0.25 respectively).

Under what circumstances do transitions to a palliative care approach occur? What is the influence of age and disease type on decision-making? Who is involved in decision-making?

• Of the 183 patients who met GSF criteria for palliative care need and for whom complete data were available, 61 (33.0%) showed evidence of transition to a palliative care approach by meeting one or more indicator of adoption of a palliative care approach (DNAR order 29.0%, referral to specialist palliative care 8.2%, prescription of long-term opiates/syringe driver 4.9%, on LCP 1.1%, documented advance care plan 0.0%).

• The significant predictors of a transition to palliative care were the GSF indicators for cancer, heart disease and stroke, together with age and living in a residential or nursing care home.

• The retrospective case note review identified that 255 out of 483 patients (52.8%) who had died following an admission to hospital showed some evidence of a transition to a palliative care approach before death (DNAR order 47.4%, placed on LCP 14.1%, referral to specialist palliative care 9.1%, prescription of long-term opiates 9.9%, use of syringe driver 3.3%, advanced decision to refuse treatment 0.8%).

• Health professionals reported difficulties in recognising that a patient had entered the last 12 months of life and reported that prognosis was not routinely discussed with hospital inpatients, representing a barrier to a structured transition to palliative care being initiated. However, they were comfortable in identifying individuals with palliative care needs.

• An either/or approach to care was identified among health professionals, rather than concurrent palliative and curative treatment as recommended in contemporary models of palliative care.

• Older age was perceived by health professionals to act as a barrier to accessing specialist palliative care because older people were seen to have less need for specialist input as a consequence of death being more expected and the perception that older people find it easier to come to terms with a terminal diagnosis.

• There was a persistent assumption among health professionals that specialist palliative care services are inextricably linked with cancer.

• No patients who were interviewed mentioned ‘palliative care’.

• Patients are not routinely offered the opportunity to make decisions about the care and treatment that they receive at the end of life.

How is information about a transition to a palliative care approach communicated to patients and their families and how are they involved in decision-making?

• Most patients who were interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. None reported having held discussions about goals of care during their hospital admission; some patients expressed a reluctance to hold such discussions, preferring to live ‘day to day’.

What proportion of hospital admissions amongst people with palliative care needs is avoidable given the current local configuration of health- and social-care services?

• Two palliative medicine consultants identified that hospital admission was potentially avoidable for 6.7% of patients (n = 14) who might be in need of palliative care according to GSF indicators. In the retrospective case note review, 7.2% of admissions (n = 35) were classified as potentially avoidable.

What patient factors predict potentially avoidable admissions?

• The numbers of potentially avoidable admissions were too small to conduct multivariate analyses to identify predictors, but it is notable that the majority of these patients (n = 33 out of 49) in both the survey and the retrospective case note review were elderly and resident in nursing or residential care.

What is the cost of potentially avoidable acute hospital admissions amongst patients with palliative care needs?

• An exploratory analysis estimated that the cost of these admissions for the period of the survey was £36,334, but the cost of alternative places of care, based on this same length of stay, was estimated to be £34,807. The estimated economic impact was therefore a potential cost saving of £1527 across both hospitals for the period of the survey. The potential annual cost saving for the two hospitals was estimated at just under £180,000. Restricting the cost perspective to NHS and PSS costs increased the cost saving to £2.5M per annum as the costs of self-funded care home places and non-NHS contributions to hospice funding are excluded.

• The retrospective case note review examined the appropriateness of admission for 483 patients who had been present in the hospital at the time of the survey but who had died (excluding sudden deaths) in the 12 months subsequently. Thirty-five admissions (7.2%) were classified by our two palliative medicine consultants as potentially avoidable. Taking into account the avoided hospital costs and the cost of providing support in alternative locations, the estimated economic impact is a potential cost saving of £45,287 across both hospitals for the inpatients with palliative care needs on the first day of the survey. The potential annual cost saving of preventing admissions amongst these patients for the two hospitals was estimated to be approximately £5.3M.

• The mean per-day long-stay payment for the 35 avoidable admissions from the retrospective case note review was £191. If it is assumed that this is a reasonable estimate of the cost per day for all palliative care admissions, then reducing the length of stay for the 483 patients in this current analysis by 2 days or 3 days would result in an estimated saving in hospital costs of £184,865 or £277,297 respectively. The annual cost saving for both hospitals per annum would be £21.6M for a 2-day reduction and £32.4M for a 3-day reduction.

Lay summary

The UK Cancer Tsar has identified that ‘a proportion of . . . dying patients receive very poor care’ in hospitals. This is reflected in the fact that half of patient complaints to the NHS relate to the end of life. As 90% of people spend time in hospital in their final year of life and 56% of people die in hospital, this ‘proportion’ translates into a significant number of patients receiving poor care, most of whom are older.

The study will examine the potential to improve care for older people at the end of life by exploring need for, and provision of, palliative care at two hospitals in England. Using a method developed by one of the study applicants, a census will be carried out of all inpatients present in the hospitals during the two week study period.

Medical and nursing staff will be asked to answer questions about each inpatient to help identify whether they have palliative care needs. For patients with palliative care needs, further questions will explore whether the patient’s care incorporates a palliative element and whether this information has been transmitted to the patient. We will also explore whether the current hospital admission could have been prevented. Where possible, patients will be asked to complete a short questionnaire about their health to identify palliative care needs from their perspective.

Interviews will then be conducted to explore these issues in more detail with patients and their families and professionals involved in planning and delivering services.

The proposal has been refined in the light of comments made by service users/research partners with experience of palliative and end of life care. Four service users will be invited to sit on the project steering group and be involved in all aspects of the study.

Introduction, aims and objectives

Relevance to SDO call for proposals

This proposed work will address and build on a number of the recommendations arising from the SDO-commissioned scoping exercise which was undertaken to determine priorities for improving generalist end of life care for adults (Higginsonet al. , 2007). This review found that the majority of studies on generalist care at the end of life were concerned with service delivery organisational issues and health professionals’ perspectives. Fewer were concerned with patients’ experiences and the majority of studies were located in community settings; few were set in hospital. A central focus of this study will be to identify best practice for older people in managing the transition to palliative care within an acute hospital setting from their perspective. Higginsonet al. 2007 advocate mixed method designs for research in palliative care and the use of case studies in this study will facilitate a good understanding of the context in order to see how the findings might apply elsewhere. Resource and health economic evaluation was identified as a cross-cutting theme and ‘one that should be an important component of future commissioned research’ (Higginsonet al. 2007:2). A key aim of this study will be to measure economically the proportion of hospital patients with palliative care needs where the admissions can be termed ‘avoidable’ and identify where gaps in community services have resulted in acute hospital admissions. This proposal addresses the final question of the SDO research brief (REF: PCC198) theme B, topic 4. We will examine the transition from ‘active treatment’, aimed at cure or chronic disease management to palliative care in the context of two acute hospitals, the care setting that currently delivers end of life care for the majority of the population.

Background, including NHS context and relevant literature

In the summer of 2008, the new End of Life Care strategy will be unveiled as part of Lord Darzi’s review of the health service. It is clear from preliminary reviews at a regional level that identification of this activity within the NHS will require the ability to identify the point at which end of life care becomes appropriate. Policy is changing to allow health professionals to respond to patients needs and preferences in a more timely fashion than is customary at present. Any initiatives in the organization or delivery of clinical care will depend on a transition of care such as that which we intend to study. We have chosen the context of the acute hospital sector, the most common care setting for UK patients at the end of their lives.

Research in the UK has identified that older people are disadvantaged at the end-of-life, particularly if they are dying from chronic conditions other than cancer. However, there are still clear gaps in the evidence base to underpin improvements in service delivery and organisation in this area, despite improved palliative care for older people having been identified as a key challenge for the NHS (DoH, 2001; Philp, 2006). A recent review (Higginson et al. , 2007) identifies that little is known about how general palliative care is, or should, be provided in acute hospitals, particularly from the perspective of patients dying from diseases other than cancer (who make up the majority of these patients and who are primarily older people). However, there is evidence that the extent of palliative care need amongst inpatients is high. A census of palliative care need in one acute hospital in Sheffield identified 23% of the 453 inpatients as having palliative care needs (according to a standard definition) by medical and/or nursing staff responsible for their care (Gottet al. , 2001). Three quarters of these patients were over 60, with the greatest proportion aged between 81 and 90 years. Only 2% had received specialist palliative care input and any palliative care they were receiving was ‘general’ palliative care. Current palliative care policy and practice within acute NHS hospitals focuses primarily upon the period immediately prior to death. The Liverpool Care Pathway (LCP), promoted by the End of Life Care Programme for use on all acute hospital wards, is argued to be effective at changing practice (Ellershaw, 2007), but focuses exclusively on the ‘last days of life’. However, as discussed in the Introduction, it is increasingly being argued that attention needs to be paid to palliative care needs earlier in the disease trajectory (Ahmedzai and Walsh, 2000; NICE, 2006). Finally, providing care closer to home and preventing inappropriate hospital admissions is a current NHS priority (DoH, 2006b). This study will explore the extent to which it is in line with the views and preferences of older people with palliative care needs and will explore the economic impact of avoidable hospital admissions within an end of life context.

Plan of investigation

The research aims will be addressed through use of a case study design in two contrasting acute NHS hospitals in England. The case study will comprise the following stages:

1. Census of palliative care needs amongst inpatients at the two settings collecting information from patients, medical and nursing professionals working in primary and secondary care.

2. Case note review; medical notes of all consenting hospital inpatients will be examined to identify (and collect additional information about) patients with palliative care needs according to standardised criteria.

3. Interviews and focus groups with key health and social care professionals and service commissioners/planners.

4. Interviews with older people identified in the census as having palliative care needs on two occasions, six months apart; and

5. An on-going literature review conducted in conjunction with data collection to ensure the findings are interpreted within the context of best international evidence and policy guidance for palliative care management in acute hospitals.

6. Retrospective case note review: twelve months after the census, a retrospective case note review will be undertaken of all inpatients present in the hospital at the time of the census who have died in the 12 months following their hospital admission.

Methods (including the plan of analysis)

Benefits of research to NHS

This project will improve insights into the delivery of general palliative care in acute hospitals and will specifically identify suggestions for best practice for older patients in this context. This will comprise guidance on when and where discussions about palliative care should occur, by whom, with what information and how these decisions should be communicated. These elements have the potential to form a care pathway to fit alongside other organisation-wide strategies and practices on palliative care, including end of life care. Adopting a proactive approach to palliative care and facilitating appropriate transitions between active to palliative care is likely to result in several tangible benefits. First, patients and their families will be more engaged in decisions affecting their healthcare, particularly those that surround withdrawal or with-holding of burdensome treatments. This will contribute to the appropriate and effective use of healthcare resources. Second, decisions about place of care may be communicated earlier leading to greater chance of the patient being in a place of their choosing. This is likely to be at home or other community based facility and not within the acute hospital. The study will enable an economic case to be examined for moving a proportion of care for people with palliative care needs out of the acute hospital and into the community, something which fits with wider NHS policy. Thirdly, communication of these decisions with primary healthcare teams will improve and enable better planning of future care by such teams, particularly at times of crisis when re-admission to hospital might be avoided. Fourthly, complaints brought by patients and families regarding lack of communication on management decisions, exposure to un-necessary treatments, and poor quality of death are likely to be reduced. Tailored reports of recommendations will also be provided to each research site which it is hoped will bring specific benefits to the NHS within these localities.

Proposals for the involvement of stakeholders

At least two service users from each location (Sheffield and Lancaster) will be represented on the study steering group, drawn from the Cancer Experiences Collaborative research partner’s forum, a collaborative group of academics, clinicians and service users from five UK Universities with expertise in supportive and palliative care research. A preliminary consultation with the CECo research partner’s group identified that they did feel this was an important and worthwhile project with key ethical challenges (summarised below). One member of the group (who is in her 80s) has already agreed to sit on the project steering group. Key roles for these individuals will include helping to train the census researchers, having input into how patients are approached within the hospital, and designing the interview and focus group schedules. They will also be asked to comment on all study materials, as well as emergent findings. It is hoped they will participate in study dissemination.

On-going training and support will be provided to service user members of the research team. This will include appropriate research training and any other support they identify as appropriate and necessary. A highly experienced educator (Maddie Welton) with a clinical background in specialist palliative care practice and management and experience of working with service users in similar research projects will help facilitate these sessions. She will also provide psychological support to the service users, and any other members of the research team who feel they require it, in line with best practice in palliative and end of life care research. Those who plan, manage and deliver services will be included in the study through targeted interviews and focus groups. In addition, one representative from the Acute Trust and one from the PCT within each locality will be invited to sit on the project steering group.

Plans for dissemination of results

There are four main audiences to consider in disseminating the lessons learnt from this project: (1) The local health care trusts that participate in the project and the wider communities of policy makers and practitioners responsible for the governance and planning of local health and social care for those with palliative and end of life care needs, especially among older people. (2) Policy makers and practitioners at national level. (3) Academics. (4) The wider public. We propose to use a range of methods of dissemination to engage with these audiences, drawing on our networks of contacts including the NHS End of Life Care Programme, The Department of Health, The National Council for Palliative Care, Help the Hospices, Help the Aged and other similar statutory and third sector organisations. Elements in our dissemination strategy will include: (1) The preparation of a short summary of findings, including key recommendations for policy, practice and research, written in accessible language. (2) The development of a project website which will outline the project’s aims and objectives and list details of publications and presentations arising from the research as they become available. (3) Presentations will be made by the applicants at relevant national and international conferences to professional and academic audiences. (4) Dissemination of findings via publication in relevant professional, clinical and lay journals. (5) Mention of the study in invited seminars and lectures and teaching activities. (6) The preparation of a press release with the help of media experts based at the University of Sheffield. Applicants have considerable experience in managing media dissemination and conducting interviews on radio and television. (7) The publication of a leaflet summarising the main findings to disseminate to the general public.

Project timetable

The project will run from January 2009–December 2011. Ethical and research governance approval will be secured for the exploratory focus groups prior to the start of the project to save costs to the SDO.

Retrospective case note proforma v1

Project timetable (PDF download)

References