Introduction
The Department of Health (DH, 2006) required Primary Care Trusts (PCTs) in England to undertake local reviews of end-of-life (EoL) services during 2007–2008, ahead of the publication of its National EoL Strategy (DH, 2008). Local work within Liverpool PCT (2008) recommended that it should ‘specifically and comprehensively commission EoL services’. This reflected the fact that EoL services were usually one small component of a wide range of services commissioned and they were rarely the focus of attention. The question was how could this recommendation be met? Tebbitt (Reference Tebbitt2009) demonstrated the need for the different stages of the Palliative Care/EoL process to be quantified, together with the associated outcomes. It was contended that a suitable vehicle for describing and quantifying the different stages of the EoL care pathway (see the section ‘EoL care pathway stages’), and making explicit the related outcomes, was already in existence, but had not been used within the National Health Services (NHS) for some time. This involved ‘Care Profiles’, which had been used and developed by the NHS Executive Information Group in the 1990s (Gandy et al., Reference Gandy, Jones and Tanner1998). They had been used to specify cancer services within the community, amongst others, and were considered an appropriate means of constructing related contracts (NHS Executive Information Group, 1997; Gandy et al., Reference Gandy, Jones and Tanner1998). This paper describes how Liverpool PCT developed care profiles for commissioning EoL services over the period January–March 2010, and how the approach can be used more widely.
Care profiles
Definition and history
Care profiles make explicit the expected service offered to a patient group to meet their needs. They are defined as ‘a strategic outline of the health and social care to be provided to meet the health needs of a patient, or group of patients, to achieve an expected outcome to an explicit standard of quality’ (Gandy et al., Reference Gandy, Jones and Tanner1998).
A care profile will set out the expected resource input, quality standards and outcomes in a format that supports monitoring and evaluation processes. It describes patterns of care or treatment, and therefore helps clarify the relationship between clinical practice and resource use. They are dynamic and within the monitoring process will be maintained and updated when new evidence is available. They are designed to reflect or guide patterns of care but not dictate them (Gandy et al., Reference Gandy, Jones and Tanner1998).
The concept was first mentioned in ‘Describing Community Care’ (King, 1993) and was considered, along with care aims and health needs groups, as a means of describing care provided in a community setting, which would support its planning, delivery and monitoring. Three community Trusts (Bradford, Chester & Halton, and South Warwickshire) then produced initial care profiles, identifying them as important clinical tools that assisted clinicians and clinical managers in their day-to-day business (Gandy et al., Reference Gandy, Jones and Tanner1998).
The common framework has consistent constituent elements, which facilitate comparisons, although providing sufficient flexibility to accommodate local variations in content. Making such comparisons is useful, both internally and externally, as it enables current practices to be reviewed and improved upon where appropriate. Individual care plans are developed for patients from within the framework (Gandy et al., Reference Gandy, Jones and Tanner1998).
It is important to emphasise that care profiles are different from integrated care pathways (ICPs). The latter contain the actual clinical care provided to an individual patient within a clinical care category or treatment plan. The fact that an ICP forms the individual's patient record containing all professional input to the care given, distinguishes it from a care profile. The two are complementary to one another (Gandy et al., Reference Gandy, Jones and Tanner1998).
Care profiles became unfashionable in the late 1990s, when the DH focused on the development of ICPs. Despite very positive responses to a national enabling project for cancer care profiles (NHS Executive National Casemix Office, 1997), funding was not forthcoming.
Structure
The generic care profile template enables set information to be recorded as to what service ‘an average patient’ would be expected to receive at a particular stage of a given disease process. The template involves numbered sections covering the range of information required (Gandy et al., Reference Gandy, Jones and Tanner1998):
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1. Health needs group (eg, Neoplasm)
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2. Care aim
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3. Expected/measurable outcome
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4. Plan/protocol
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• Skill mix
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• Frequency
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• Duration
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• Location
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• Outcome
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5. Consumables
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6. Costs
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7. Limiting factors
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8. Quality standards.
The care aim describes the overall aim and purpose of a period of care. It does not refer to specific planning goals or individual patient/client contacts, but to the main reason why care is being delivered. Eight care aims descriptions were developed in the past work: anticipatory, curative, enabling, health assessment, maintenance care, palliative and bereavement care, rehabilitation and supportive care (Gandy et al., Reference Gandy, Jones and Tanner1998).
Tailoring care profiles for commissioning purposes
The proposition of developing care profiles to commission EoL services was agreed in principle by Liverpool PCT and relevant partner organisations. One issue to be addressed was that historically care profiles had been developed within community organisations on a uni-disciplinary basis. For example, what services community nurses deliver at each cancer stage (Gandy et al., Reference Gandy, Jones and Tanner1998). Commissioning, by definition, is multi-disciplinary, covering all service requirements across all professions and service provider organisations.
A workshop was held by the PCT at the end of 2008 to validate how to apply the approach for commissioning purposes (Liverpool PCT, 2009). Twenty-eight professionals from across the PCT and local professional EoL networks, including patient representatives, concluded that care profiles should be structured on the basis of EoL Stage, followed (in order) by professional group, diagnostic group and provider.
Consequently, care profiles enable commissioners to specify: what service(s) a patient can expect to receive, at what stage in the disease process, with what resources and with what expected outcomes.
The details should reflect what services should be delivered, rather than the actual current practice.
The view was taken that EoL care profiles should focus on services delivered primarily in a community setting, given that this was where care profiles had been successfully applied in the past. Because of limited resources, support given by Specialist Palliative Care Teams in hospitals could not be accommodated within the work, and were therefore excluded. This would need to be the subject of future work.
The ‘building block’ approach of care profiles needed to be taken into account (Gandy et al., Reference Gandy, Jones and Tanner1998). This acknowledges that an individual patient can be in receipt of care for different symptoms/conditions concurrently. For example, many EoL patients will have one of cancer, chronic obstructive pulmonary disease or dementia. It is impractical to try and design single care profiles to embrace all potential permutations and combinations. Therefore, a comprehensive care profile approach to commissioning would mean an individual patient would receive multiple, complementary care profiles, each designed to deal with specific conditions or clinical problems. In practice, clinicians would tailor combinations of profiles according to patients’ needs and circumstances (Gandy et al., Reference Gandy, Jones and Tanner1998).
Although the care profile structure includes ‘costing’, this was excluded from the developmental work, which was to determine agreed types and levels of EoL care. Any costing would be included in the resultant commissioning process.
EoL care pathway stages
There are several published pathways relating to EoL services. Some cover the whole of the period from diagnosis to support for the bereaved, whereas others focus on the last days of life. The latter include the Liverpool Care Pathway for the Dying Patient (Marie Curie Palliative Care Institute Liverpool, 2010), which is recommended by the DH (2008).
One comprehensive EoL care pathway is the Gold Standards Framework (GSF, 2010), which uses needs-based coding – using the question ‘Would you be surprised if the patient died within the next 12 months?’ to predict main areas of need and support required:
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A. Blue: stable – year plus prognosis
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B. Green: unstable/advanced disease – months prognosis
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C. Yellow: deteriorating – weeks prognosis
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D. Red: final days/terminal care – days prognosis
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Navy: ‘after care’.
Another comprehensive EoL care pathway is the North West EoL Care Model (Merseyside and Cheshire Cancer Network, 2010), which divides the process slightly differently:
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1. Advancing disease – timeframe one year or more
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2. Increasing decline – timeframe six months (approximate)
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3. Last days of life – timeframe last few days
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4. First days after death – timeframe first few days
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5. Bereavement – timeframe one year.
Work had already progressed within Liverpool to design and construct a local EoL supportive care register (SCR), which would record the EoL stage relevant to each patient (Gandy et al., Reference Gandy, Hubbert, Ingley, Rogers and Warriner2010a). This had included seeking the establishment of Read codes that could specify stages of the EoL care pathway, taking into account the GSF and North West approaches. This resulted in four specific stages as follows (Gandy et al., Reference Gandy, Hubbert, Ingley, Rogers and Warriner2010a):
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• Stage A – Supportive care (6–12 months ahead of projected death)
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• Stage B – Palliative care (one to six months ahead of projected death)
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• Stage C – Anticipatory palliative care (final days – one month)
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• Stage D – Final days pathway.
Structure/design of project
An iterative approach was adopted involving workshops and consensus, based on action learning events (Brockbank and McGill, Reference Brockbank and McGill2006), which incorporated and adapted past qualitative approaches for developing care profiles (Gandy et al., Reference Gandy, Jones and Tanner1998) for each specified stage, which formed a case study.
Aims
The primary aim was to produce a series of care profiles that would cover the full EoL care pathway. These needed to be consistent with definitions within the local EoL SCR, used to record the current EoL stage relevant to each patient, as set out above (Gandy et al., Reference Gandy, Hubbert, Ingley, Rogers and Warriner2010a). (The only slight adjustment was that any care profile for Stage D should include post-death/bereavement support to relatives and carers, given that this was inter-twined with the direct care given to the patient.)
The project aimed to identify any other relevant EoL care support required for patients with specific diseases, or conditions, such as dementia. (As described above, the disease-specific treatment such patients required would be covered by separate care profiles, outside the scope of the project.)
The project design aimed to maximise ownership amongst local EoL providers.
Participants
Participants included representatives of: clinicians and managers at acute, mental health and community trusts; ambulance services; care homes; commissioning; community nursing; General Practioners (GPs); hospices; information technology; out-of-hours services; patients and carers; personal social services; specialist palliative care teams; and therapy professionals.
These were recruited from across the PCT and local professional EoL networks. Anyone who was unable to attend the project workshops, was able to receive and comment on the draft outputs as part of an external reference group.
Methods
Four half-day workshops were held, each targeted at one stage and forming a case study. They addressed the four stages in reverse order, that is, the first workshop looked at Stage D. This enabled participants to get used to the concept of care profiles in the context of services that were most clearly defined.
To make best use of time, a draft care profile was prepared in advance of each workshop, using the above-set structure, with numbered sections. Only section 4 (Plan/protocol) was subdivided to reflect the separate identified components of care for that particular stage. The types of information required can be seen in Figures 1 and 2.
Care profile for end of life Stage D: final days pathway – edited to show only two components of treatment (4.2H and 4.3H)
Agreed components for Section 4 (Plan/protocol) for each of the End of Life Care Profiles for Stages B, C and D
Each draft care profile was prepared by a senior community nurse involved in EoL services, supported by the project facilitator. It was deemed easier for workshop participants to consider a well-prepared draft, and then suggest amendments or make criticisms, rather than produce one from scratch within the workshop itself.
The draft care profile was presented in outline to the full workshop, with comments and queries invited. The opportunity was given for amendments to the main plan/protocol components. Any special groups of patients requiring ancillary services to be specified, could also be identified.
The workshop then broke into small, multi-interest groups to evaluate the profile details and suggest amendments. The responses from each group were collated by their respective facilitators, with the main points and issues fed back to the whole workshop for general debate and decision wherever possible.
Following the workshop, a second draft version of the care profile was produced, taking into account the agreed amendments and improvements. This was circulated to the external reference group for further comment and validation. Responses were fed into the subsequent workshop, where one facilitated group considered them before confirming the definitive version of the care profile, reporting its findings to the whole workshop.
The revised structure and scope of the care profiles (see section ‘Care profiles’) meant that the project was dealing with some new ground: some anticipated issues did not materialise and some unforeseen issues arose. Wherever this occurred, there was an open discussion and debate, with a collective decision on the most appropriate solution.
Ethical considerations
As the project was deemed a service development and did not include patients or patient data, local research ethics approval was not required as per national guidance (NRES, 2009).
Results
Participation
Forty-three people participated in the workshops from across sectors and interests, although not all of them attended each and every workshop.
Development of care profiles structure and content
As described above, some issues arose, which had a material impact on the structure and content of the care profiles. First, a distinction was required to be made between the support to EoL patients in their own home or a residential home compared with patients in a nursing care home for particular components of treatment, because the latter has qualified nurses on site. Two types of entry were made in such cases: the letter ‘H’ depicts requirements for the former, with reference made to ‘Home setting’; and the letter ‘C’ depicts requirements for the latter, with reference made to ‘Care home setting’.
Some types of care needed to be available for some EoL patients rather than all EoL patients, for example, specialist nurse input to control complex symptoms. It was agreed that the whole of such an intervention should be included in the care profile; however, a percentage figure should also be recorded to indicate the proportion of EoL patients expected to receive it. The percentages were ‘best estimates’ from the workshops, although in some cases specific figures could not be agreed. These percentages were considered indicative, rather than definitive – the PCT and its partners needed to establish actual percentages from relevant data following the project.
It followed that there was sometimes a requirement to delineate when such interventions were or were not appropriate. There were two options. The first was to try and create specific rules; however, this was clearly impractical, and arguably inappropriate, given each patient's circumstances were very individual. The alternative was to prepare case vignettes illustrating circumstances where an intervention was appropriate. Given the fact that clinical judgement was always relevant, case vignettes were agreed appropriate and sufficient.
Bereavement support can be required for long periods. Therefore, the post-death/bereavement support included in the Stage D profile was limited to that provided up to and including the funeral.
The role of the GP in relation to EoL care profiles was discussed. This required wider debate and agreement with representatives not present at the workshops, as it linked in with GP contract matters and negotiations. It was agreed to progress this outside the project.
Special groups
It was originally anticipated that there would be some specific EoL care support required for patients with specific diseases, or conditions, such as dementia. The clear advice from the project was that this was not the case – all types of EoL patients had similar requirements in terms of EoL care. The treatment for their condition was obviously linked, but was separate from this and outside the project remit.
EoL care profiles
The decision was taken not to prepare a care profile for Stage A, because a patient will only be entered on the EoL SCR if a clinician answers ‘No’ to the surprise question (GSF, 2010). Generally, this means primary care professionals maintain a watching brief on a patient (Gandy et al., Reference Gandy, Hubbert, Ingley, Rogers and Warriner2010a). When and if their condition deteriorates and their care needs increase, it will be necessary to ensure their requirements are in place for when they enter Stage B. Any information and documentation discussed with the patient during Stage A should be recorded and reviewed at the monthly GSF meeting where patients on the SCR are reviewed.
Specific care profiles were determined for each of Stages B, C and D. These reflected the increasing support required as patients’ condition deteriorates. A separate ‘Uncertainty’ care profile was produced to cover what happens when a patient/carer is uncertain of what to do, when they are on their own and a problem or crisis arises.
Figure 1 sets out the structure and content of the agreed care profile for EoL Stage D (Final days pathway). It uses the established numbered sections described above (Gandy et al., Reference Gandy, Jones and Tanner1998), but for reasons of space, the full details are shown for only two of section 4's components (4.2H and 4.3H). Figure 2 lists all of the components for each of Stages B, C and D. Within section 4 of an individual care profile, components are assigned sequential identifier numbers, always starting with 4.1. However, there is no link between components that might have the same identifier number in the different care profiles.
Where a component of treatment can be delivered either in a patient's own home/residential home or in a nursing care home, then the same component number is retained, but with letters ‘H’ and ‘C’ assigned, respectively. The ‘percentage in group’ figure clarifies the degree to which each component applies to all patients.
It can be seen that profiles enable both overarching measurable outcomes for the whole of the stage, and specific outcomes and outputs for each component of the treatment delivered.
Where ‘percentage in group’ is less than 100%, case vignettes illustrate when that component of treatment is applicable, as described above. Figure 3 provides an example of a case vignette, which relates to component 4.5 of the care profile for Stage B. Multiple vignettes were prepared for a given component of care, if this helped demonstrate the range of circumstances that could apply.
Case vignette for domiciliary visit from Palliative Medicine Consultant
Care profiles itemise all the different aspects of treatment: the grade, type and number of staff involved; the frequency; the time involved (range and mean); and the location. Certainly, the care delivered to an individual patient will reflect his or her specific needs, which may be much greater or much less than that stated, according to circumstances; the care profile presents the agreed level of care pertaining to the most typical patients.
The duration of care recorded is the time taken to deliver the care itself and the associated in situ actions. It does not include travel time, and similar. This is deliberate because, for example, the average travel time between visits to patients’ homes is likely to be greater in rural compared with urban environments.
The inclusion of GP visits in Stage D (see Figure 1) was to highlight the benefit of regular GP visits to patients in their final days, thereby addressing the requirements of death certification. It does not conflict with what is stated above in relation to GPs.
Standards to be applied across care profiles
Certain standards were applicable to all three stages, with access to relevant services being a priority. These included: 24/7 telephone specialist palliative care advice for clinicians working in all locations; single point of contact for patients/carers for support/advice; rapid response assessment/treatment service; and specialist multi-professional, multi-agency community palliative care service (compliant with NICE (2010) Improving Outcomes Guidance Supportive & Palliative Care).
In addition, a number of common outcome measures were relevant throughout the pathway: the EoL SCR should be used; anticipatory prescribing should increase by 10% (against baseline); avoidable hospital admissions should reduce by 10% (by 2012); and there should be a good carer experience (measured by carer experience audits).
All assessments should include physical, psychological, emotional and spiritual needs.
Some mental health issues
Although care profile requirements were agreed to be no different for people with dementia (see section ‘Care profiles’), it was decided it was appropriate for Advanced Care Planning questions and issues to be discussed when the person was still capable, which could be years ahead of death. It was important to establish the practicalities, but this was outside the project's remit.
One concern involved a small but important group relating to mental health/learning disabilities and palliative care. Patients’ communication could sometimes present problems, and often professionals from one side might diagnose a problem as being more relevant to the other professional group. Further work is needed to address this issue.
Discussion
Outcome of project
The project was considered successful, with its recommendations endorsed by the PCT as a basis for commissioning EoL services across Liverpool. It brought together personnel from across all sectors and interests to transparently develop a view of what services patients can expect to receive at the different stages of the EoL care pathway (Gandy et al., Reference Gandy, Hubbert, Ingley, Rogers and Warriner2010a). This cross-sector approach ensured an appropriate balance in the resultant recommendations. One frequent comment was how good it was for the personnel to actually meet with one another to discuss common issues.
The care profiles represent a clear statement, which underpin the commissioning of EoL services and the associated negotiations. They can also be used to inform patients and carers about what services to expect and facilitate audit and training. At the end of the project the PCT integrated the profiles within its formal EoL commissioning process. This included prioritising areas where material improvements could be achieved, having regard for available resources, and the range of existing service providers and agreements.
The flexibility within the project was important. This linked to a preparedness to accept that creating care profiles for commissioning purposes represented a significant development from the original uni-disciplinary approach. Hence, there was a reasonable probability that unanticipated issues would arise, as was the case, and through collective evaluation and debate, solutions were identified (see section ‘Results’). It is recognised that further enhancements of the care profile structure will be required in the future to respond to evolving requirements and evaluation of their usefulness in practice once implemented.
The template is generic and EoL care was the first clinical area to which it was applied in the context of commissioning services locally. The ‘building block’ approach meant that the process served to maximise the local ownership of, and confidence in, the EoL results. The conclusion that there were no special groups and all types of EoL patients had similar requirements in terms of EoL care is particularly important. It reflects the findings of Gandy et al. (Reference Gandy, Jones and Tanner1998) that care for cancer services was essentially generic in nature, and requirements did not really vary with the site of the cancer.
Gandy et al. (Reference Gandy, Ashton, McClelland, Roe, Mazhindu, Gomm, Horgan, Hughes, McAinsh, Mullen and Wrigley2010b; Reference Gandy, McClelland, Ashton, Roe, Mazhindu, Gomm, Horgan, Hughes, McAinsh, Mullen and Wrigley2010c) highlighted the economic case for improving the quality of EoL support in nursing care homes through training. The transparency of care profiles can enable commissioners to consider whether there are differences in the local support required for EoL patients who are in nursing care homes that have had training in EoL care and those that have not. This would then inform the cost-benefits of funding the rolling out of EoL training across all local nursing care homes.
Importantly, the care profiles approach for EoL care builds on and serves to emphasise the need for a clear decision that a patient has moved from one stage to the next, thereby ensuring proper co-ordination of care and appropriate communication to all relevant parties (Gandy and Murphy, Reference Gandy and Murphy1997; Gandy et al., Reference Gandy, Hubbert, Ingley, Rogers and Warriner2010a).
Benefits of care profile approach
The benefit of a care profiles approach is that it enables commissioners to break down an ICP into its constituent parts and then identify what services and resources are required for each. Through a process of scrutiny and debate about whether the services are being delivered in the right way and whether the right people are doing the right tasks, it readily facilitates service review and redesign and supports the transformation of community services (DH, 2009).
It can be seen that the approach makes explicit the nature of the care to be provided (Gandy et al., Reference Gandy, Jones and Tanner1998), and it supports initiatives such as personal health budgets (DH, 2010a) by informing and educating patients and carers of the full range of care available, relevant to their circumstances, and the support likely to be required.
It links resources, quality, outcomes and costs throughout the process, supports the development of ICPs and enables a key worker/care co-ordinator role. It also facilitates benchmarking, although not being dependent upon the availability of Information Management and Technology support to begin (Gandy et al., Reference Gandy, Jones and Tanner1998).
Some general attributes of a care profile make the case for their development and use as a quality monitoring tool. For example, the standards described in each profile are recognised and accepted as a consensus amongst the clinicians delivering the service. This ensures clinical validity. In this context, the provision of care is equitable to each patient, and thus the quality is explicit.
Up-to-date practices are incorporated, thereby ensuring the standard and availability of the care provided. Consideration is given to possible variations to the usual care provision in order to ensure the appropriateness of the care.
The profiles should be measurable and represent care of a set standard within an acceptable and affordable standard (Gandy et al., Reference Gandy, Jones and Tanner1998).
The fact that the Liverpool project only took a little over 2 months demonstrates how the approach simplified the planning and commissioning processes and made them both manageable and affordable.
However, it will be a new concept to many, and consequently there are potential limitations. For example, there could be variations in local interpretation, in part because of how nomenclature regularly used by professionals can vary between places and individuals. Given the learning curve involved, training is important (Gandy et al., Reference Gandy, Jones and Tanner1998; Reference Gandy, Kershaw and Beaumont2002).
Care profiles approach and commissioning by clinical commissioning groups
The development of care profiles must be undertaken and subsequently owned by clinicians. A fundamental issue relating to their development is that a review of clinical practice takes place. A care profile embraces the care that will be given on an anticipatory or expected basis. Thus, the prospective planning and allocation of resources is facilitated. Further, a care profile provides a tool for the incorporation of evidence-based care into local practice through consensus and local agreement by clinicians. Patient involvement is a major issue in the context of quality care, and profiles also have a role when discussing options with patients and carers (Gandy et al., Reference Gandy, Jones and Tanner1998).
Clearly, a care profiles approach readily sits with and supports improved commissioning arrangements and clinical commissioning groups (CCGs), as set out by the DH (2010b; 2011a). This applies not only for EoL services but also for other key services involving primary and community care. The central theme of the reforms is to understand the health needs of a local population, or group of patients, and of individual patients, and, working with patients and the full range of health and care professionals involved, to decide what services will best meet those needs, and to design these services. This involves the creation of clinical service specifications to form the basis for contracts with providers, which can then be monitored to ensure that services are delivered to the right standards of quality.
The NHS Commissioning Board will require commissioning for quality improvement and will promote and extend public and patient involvement and choice. It will hold CCGs to account, ensuring that commissioning decisions are underpinned by clinical insight and knowledge of local healthcare needs. CCGs will be required to develop integrated services that make sense to patients and the public (DH, 2010b; 2011a). Care profiles are a straightforward means, whereby CCGs can make explicit and transparent to the NHS Commissioning Board, their partners and the public, what care they have commissioned to be delivered. The associated process presents the opportunity for service redesign by enabling inclusive, constructive criticism and challenge of the status quo.
A key implication of commissioning by CCGs is that the expected role and contribution of GPs in respect of various health services will need to be made explicit. This was specifically excluded from the Liverpool project for the reasons stated. However, there is no reason why their contribution to EoL care could not have been included if this had been required, and the same can be said about care profiles in general.
It is concluded that care profiles represent the type of clinically relevant and detailed vehicle essential for CCGs.
Palliative care funding review
The recommendations of the national Palliative Care Funding Review (2011) were published in July 2011, setting out a new funding system for all palliative care services, which uses national needs-based tariffs. It clarifies which services should be covered by the tariff across health and social care for both adults and children, and proposes a classification system based on phase of illness, first developed in Australia.
The initial classification system involves four levels, as follows (Palliative Care Funding Review, 2011):
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• Class 1 – Stable
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• Class 2 – Deteriorating
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• Class 3 – Unstable
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• Class 4 – Dying.
These are different from the stated EoL care pathway stages of both the GSF (2010) and the North West EoL Care Model (Merseyside and Cheshire Cancer Network, 2010). However, this reflects the difference in approach, and it is reasonable to infer a great degree of correspondence between the four classes and the four stages agreed for the Liverpool EoL care profiles.
If the Palliative Care Funding Review (2011) had been published before the Liverpool project took place then there is no doubt that its four classes would have been adopted rather than those shown in the section ‘EoL Care Profiles’. This may have meant some differences in the detail of the resulting care profiles; however, it is considered that these would have been small, and the arguments put forward in this paper would not change.
What is critical to recognise is that the Review sets a financial framework for palliative care across the country; however, it does not determine the levels and organisation of services to be delivered in each locale. This would be the responsibility of commissioners to determine within the stated financial framework, and there will be variations between areas. Therefore, EoL care profiles represent an essential commissioning tool to establish the local services required within the available finances.
The Liverpool project focused on services within the community, but the national tariffs cover all relevant hospital, community and social care services. Whether a care profiles approach can also be applied to these other EoL services would be the subject of further work. Nevertheless, it has been demonstrated that care profiles are a practical commissioning tool for what is arguably the largest and most complex component of EoL care.
Practicalities of applying care profiles
The development towards ‘best practice’ requires comparisons with care practices elsewhere, research evidence and other guidance (Gandy et al., Reference Gandy, Jones and Tanner1998). It follows that care profiles development needs to involve personnel with the relevant knowledge and skills.
One potential means of facilitating best practice in the future would be for any developed care profiles to be benchmarked across commissioners (Gandy et al., Reference Gandy, Jones and Tanner1998). This would enable local solutions to be compared, with a view to further enhancements where like-for-like circumstances suggest them achievable, thereby enabling a virtuous circle over time.
Although commissioners may be satisfied that their care profiles incorporate best practice, they cannot assume service providers can automatically achieve it. The approach enables difference(s) between current local practice and such a standard to be clarified and quantified. Progress towards the standard is then subject to negotiation.
There is a close relationship with audit, and the inclusion of outcomes in each profile contributes to the clinical audit of patient care. Related audit mechanisms and processes should be in place to ensure that the standards are consistently maintained (Gandy et al., Reference Gandy, Jones and Tanner1998).
The Liverpool project did not seek to establish links between EoL care profiles and data from the related providers’ information systems. One reason is that there are multiple providers with different systems. Another is that the mainstream community information systems in the NHS, covering district nurses and community matrons, involve ongoing development with different systems in different parts of the country (Connecting for Health, 2010a). The full clinical system for Liverpool (Lorenzo Regional Care from iSoft, 2010), which includes the use of Snomed codes (Connecting for Health, 2010b), is not planned to be fully operational before Spring 2012. Clearly, it is desirable to determine how mainstream information systems’ data can support audit and care profiles, but this represents future work. It should not detract from the merits of using care profiles for commissioning services.
Because care profiles are structured around the average input required, and use ‘percentage in group’ where support is not universally required, it is possible to project the total activity involved in delivering the related EoL care. This requires empirical data of patients involved in each stage and the periods of time they access services. This total activity can then be costed, including allowances for travel and overheads, which should be sufficient for the purposes of programme budgeting (DH, 2010c) and supporting the implementation of both the Right Care programme (DH, 2011b) and the Palliative Care Funding Review (2011) recommendations.
Gandy et al. (Reference Gandy, Jones and Tanner1998) recommended the contracting currency to be used for cancer care profiles was ‘patient months’. This reflected the time a patient had access to a particular care profile, which is important in respect of so many long-term conditions where the prognosis is uncertain. The applicability of this for EoL care profiles requires confirmation, but it is essential to bear in mind that whereas improved efficiency in acute care is usually associated with reduced interventions and lengths of stay, in EoL care ‘success’ is generally seen as a patient maintaining a particular stage of the EoL care pathway for as long as possible.
Developmental perspectives
Although the development of EoL care profiles was a local initiative undertaken by Liverpool PCT, it can be seen as readily transferable for commissioning EoL services elsewhere. Arguably the approach is transferable to other care areas with an emphasis on delivery in primary and community care, such as long-term conditions.
The conversion of the uni-disciplinary care profiles model to meet the requirements of commissioning services is a genuine innovation, one that evolved during the project itself.
The continual process of challenge and validation within the project meant that it embraced both reflective and developing practice. By driving the need to be explicit about what care is, and is not required, the project was strongly evaluative and represented a critical, learning experience for its participants.
The benefits of using care profiles to commission EoL services have been shown. Their flexibility enables the presentation of local solutions that reflect local circumstances, avoiding the dangers of attempting ‘one size fits all’ solutions. Wide dissemination of the approach should yield further improvements in the quality of such care and attendant outcomes, as local solutions are benchmarked against one another.
It follows that the wide application and benchmarking of care profiles for commissioning EoL services, and other areas of care such as long-term conditions, would represent a new area of research. The further development and benchmarking of care profiles is being actively pursued by Edge Hill University (2011).
Conclusions
Care profiles are potentially a useful and practical approach to commissioning. Their strength is their simplicity and flexibility, and that they complement and augment ICPs. The results from Liverpool in respect of EoL care provide a clear and expeditious means of commissioning services in a way that is very inclusive, with its focus on clinicians, patients and carers.
The approach has the benefit of being explicit and requires the recording of outcomes throughout the care process, which aids quality and audit processes. The results from such processes, together with the publication of new evidence, can be used to continually update and enhance the care profiles dynamically, and thereby improve services.
EoL care profiles support the implementation of the Right Care programme (DH, 2011b). They also complement and support the implementation of the recommendations of the Palliative Care Funding Review (2011) by acting as a tool that commissioners can use to establish what local services should be delivered within the financial resources determined by the national tariff-based system.
A care profiles approach could be widely adopted to enable the commissioning of not only EoL services but also other appropriate services. This should be accompanied by the benchmarking of the resultant profiles to give the opportunity to review and improve them following their implementation. The publication of benchmarked profiles would also aid transferability by informing commissioners, who are using the approach for the first time, about practice elsewhere. The overall consequence could be rapid improvements in the definition and quality of primary and community care based services across the country.
Acknowledgements
The authors thank everyone who attended the various workshops and contributed through the external reference group. Particular thanks are given to David Tanner, of Halton & St Helens PCT, for his contribution to the facilitation of the December 2008 workshop, and to Sylvia Carney, Margaret Parkinson and Barbara Sweeney of Liverpool PCT for their preparation of the draft care profiles for the main project workshops. They acknowledge the significant support and contributions of Nicola Allen, Head of Strategic Commissioning for Liverpool PCT, who acted as the chair for the project, and Professor John Ellershaw and Dr Heino Hugel, the respective chairs for the Liverpool and Aintree professional EoL networks. All costs of the project were paid for by Liverpool PCT.
