Using care profiles as a catalyst for improving end of life commissioning, involvement and service delivery
- 1Health & Social Care, Edge Hill University, Ormskirk, UK
- 2Liverpool Business School, Liverpool John Moores University, Liverpool, UK
- 3Personal Social Services Research Unit, University of Manchester, Manchester, UK
- Correspondence to Robert Gandy, Health & Social Care, Edge Hill University, c/o 13 Woodkind Hey, Spital, Wirral, CH63 9JY, UK;
Contributors RG and BR conceived and designed the workshop and feature article. It builds upon their published work on End of Life Care Profiles (with co-author Jean Rogers)7 and sets out how this commissioning methodology relates to, and can be used to support key areas of End of Life Care, primarily Advance Care Planning, palliative care funding tariffs and patient and public involvement. With regard to Advance Care Planning, RG and BR undertook empirical data collection and analysis. RG drafted the manuscript, and both authors revised it critically for important intellectual content, prior to giving final approval of the version to be published.
Objectives In 2010, Liverpool Primary Care Trust successfully pioneered a care profiles approach to commissioning End of Life (EoL) services. They established service requirements for each stage of the EoL pathway, and set out skill mix, delivery, quality and outcomes. This feature sets out how the approach can also support local work relating to Advance Care Planning, palliative care funding tariffs and patient and public involvement.
Situation Local EoL services vary, reflecting geography, history, service models and resources. Few commissioners know in detail how all EoL services and resources systematically inter-relate, particularly those involving non-specialist services. Also, anecdotal evidence indicates that information provided by healthcare professionals to patients and carers is not necessarily consistent or complete.
Finances The planned introduction of per patient tariffs for palliative care in 2015 means commissioners must be clear about what EoL services are and what are not covered by the tariffs, and how this might impact on service delivery and contracts.
Information A multi-disciplinary workshop established that by clarifying what services are commissioned locally, EoL care profiles can provide detailed information to ensure patients and carers receive comprehensive, consistent, quality information to support their Advanced Care Planning. They can address gaps in EoL information prescriptions and enable transparent information for patient and public involvement.
Conclusions EoL care profiles enable local services to be commissioned in detail, which is a catalyst and essential precursor for an inclusive and explicit approach to planning and resourcing services for individual patients and the population as a whole.
The National End of Life (EoL) Strategy1 for England required commissioners to ensure appropriate EoL services were in place locally. Subsequent guidance from the National Institute for Health and Clinical Excellence (NICE)2 reinforced this stating that: ‘commissioners should collaborate with clinicians, local stakeholders, and service users, when determining what is needed from services for people with EoL care needs’, and ‘the EoL care pathway should be person-centred and integrated with other elements of clinical care’. This is consistent with the general need to involve patients, carers and the public in health decision-making,3 and the UK Government's Right Care programme.4
The Palliative Care Funding Review5 pointed the way for introducing national per patient tariffs for palliative care services by 2015, following a programme of pilots.6 Therefore, commissioners will need clarity about what palliative care and other EoL services are actually commissioned to ensure their affordability when the tariffs are introduced.
In 2010, Liverpool Primary Care Trust pioneered a care profiles approach to commissioning EoL services, primarily in the community, determining detailed service requirements for each stage of the EoL care pathway.7
EoL care profiles involve templates for standardised 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. They encompass: health needs group; care aim; expected/measurable outcome; plan/protocol (skill mix; frequency; duration; location; outcome); consumables; costs; limiting factors; and quality standards.7
It should be noted that the term ‘care profile’ has a variety of other uses, usually involving sets of indicators identifying and quantifying variations in services and/or epidemiology across geographical areas, or similar. The excellent EoL care profiles commissioned by the National End of Life Care Intelligence Network8 are very different from those covered by this feature article,7 which represent a detailed commissioning tool.
New commissioning environment
The new commissioning arrangements in England, set out in the Health and Social Care Act 2012,9 require general practitioners to form Clinical Commissioning Groups (CCGs) to commission for quality improvement and promote and extend public and patient involvement (PPI) and choice. CCGs will be held 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.7 Addressing EoL requirements1 will be a priority, but it will compete against many other priorities in the prevailing financial climate.
Care profiles are a simple, flexible, consensual commissioning approach which breaks down the EoL integrated care pathway into its constituent parts, details the services to be provided for each component of care and requires outcomes to be recorded throughout.7 The benefits include scrutiny and debate about whether services are being delivered in the right way and whether the right people are doing the right tasks. This continual process of challenge and validation, embraces both reflective and developing practice, and readily facilitates service review and redesign and supports the transformation of community services.10 It also incorporates evidence-based care, and makes explicit the nature of the care to be provided, linking resources, quality, outcomes and costs throughout. Care profiles therefore represent the type of clinically relevant and detailed commissioning vehicle essential for CCGs.7
This feature focuses on how EoL care profiles can act as an essential precursor for an inclusive and explicit approach to planning and resourcing services for individual patients and the population as a whole.
Patient tariffs for palliative care
The Palliative Care Funding Review5 for England proposed a new per patient tariff-based funding system for all palliative care services, to be in place by 2015, clarifying the services covered across health and social care for both adults and children.5 The detailed aspects will be developed and tested through a programme of related pilot projects over 2012–2014.6
The tariffs will cover all palliative care but not all EoL care; the demarcation will be confirmed during the pilots employing their respective existing, accepted definitions. Therefore, commissioners need clarity about all existing EoL services locally (allowing for any necessary/desirable changes ahead of 2015) to compare related resources with what is covered by the palliative care tariff, when published. (Similarly, palliative services not relating to EoL services require confirmation.) This is essential to establish the degree to which services are affordable within the tariff. The risk is that resources invested in existing local palliative care services will not correspond with tariff-based income, with potential surpluses and deficits.
EoL care profiles provide a requisite level of detail for (at least) community-based EoL services. They state all discrete components of EoL care, indicating for each: which staff should be involved; where care should be delivered; how frequently the care should be delivered; and how long each intervention should take. Therefore, by applying appropriate cost assumptions, and utilising data from local community information systems, EoL supportive care registers and demographic data (eg, projected deaths), a (preliminary) costing is possible of what is arguably the largest area of EoL care service delivery.11
Essentially, this represents an activity and finance modelling exercise, which is manageable, and can accommodate the ranges of time relating to patient contact and variations in which patients receive which specific service components. Assumptions can also reflect whether individual components of care may or may not be covered by the national palliative care tariffs.5 This consequently informs the local risks associated with their introduction, enabling commissioners to act accordingly, and be transparent and inclusive about how they reached their decisions. The alternatives are: to do nothing about projecting the impact of the tariffs on local services, which would not be acceptable given the current unknowns and likely size of the resources that would be at risk; and to try and establish all existing local EoL care empirically, which could cost a great deal of money, would be very difficult if not impossible given the data available in current community information systems12 and would arguably be quickly out-of-date.
In addition to underpinning the costing of EoL services, and their relationship with palliative care, EoL care profiles enable a review of how current (community) services relate to service level agreements and contracts. Different components of care can be delivered by staff from different organisations, which is likely in most areas. Therefore, the activity and finance modelling affords the opportunity to correspond the calculated/projected level of activity and resource for each provider organisation with those specified within existing agreements. The degree of correspondence can inform future negotiations. Also, to support service review and redesign, the process can enable individual components to be reviewed, with some possibly being merged and/or switched between providers.
Using EoL care profiles to enable activity and financial modelling of EoL services is not unique to the UK, and can be applied to such services in any country. The straightforward modelling approach can be readily applied by local management and finance staff. Care profiles are sufficiently flexible to accommodate all geographical situations, with the critical point being their development by local managers, professionals and service users, so that local factors are appropriately accommodated.
Advance care planning
The Gold Standards Framework is a systematic evidence-based approach to optimising the care for patients nearing the end of life delivered by generalist providers. It is concerned with helping people to live well until the end of life and includes care in the final years of life for people with any end stage illness in any setting.13 The associated toolkit14 includes Advanced Care Plans (ACPs), which themselves can include Preferred Place of Care (PPC) documentation.15
ACPs originally were developed in the 1960s,16 and are key to quality EoL care provision, incorporating a process of discussing and planning ahead, identifying people's preferences, wishes and likely plans. They clarify what they do and do not wish to happen. Although not legally binding, ACPs are invaluable in determining planned provision of care.15 There is widespread international interest in ACPs although their application varies.15 ,17 ,18
When preparing ACPs, healthcare professionals inform patients and carers about services they might expect to receive during the last months of life, often responding to questions. Ideally, such professionals should provide full information to the best of their knowledge and ability, but anecdotal evidence suggests that advice given is not necessarily consistent, for whatever reason, and professionals can feel ‘isolated’ when providing guidance.
If care profiles are used to commission local EoL services, then there is apparent potential to facilitate consistent and comprehensive information for patients and carers about the services available to them at each EoL stage, irrespective of the discipline of the lead professional.
Given the above, in early 2011 an action learning workshop19 was held in Liverpool to determine how the locally developed EoL care profiles could support the development of ACPs,15 contributing to quality, comprehensive information. The question of varying information requirements between professionals and patients/carers, and between patients living at home and in care homes, was also addressed.
Recruitment reflected that of the original project.7 A convenience quota sample of 29 people were contacted, with 24 attending, reflecting all sectors and interests: clinicians and managers from acute and community trusts; commissioning; community nursing; general practitioners; hospices; information technology; patient/carer representatives; personal social services; specialist palliative care; and therapies.
Initial discussion identified high-level matches between the care profiles and ACP requirements. The workshop then broke into small, multi-interest groups (there were four groups of six people) to confirm the detail of how care profile information should best support ACP requirements and be organised. The responses and written information from each group were fed back by a facilitator to the whole workshop for general debate and decision. The workshop summary findings were then collated and circulated by email to all attendees to confirm their accuracy, completeness, validity and agreement.
Findings: high-level matches between EoL care profiles and ACP requirements
Plan/protocol information was deemed very relevant, but should be tempered to spare patients/carers the technical details. For example, it is sufficient to say a district nurse will undertake an assessment, without reference to grade. Similarly, specific ‘percentage in group’ figures should not be quoted: general descriptors such as ‘all patients’, ‘some patients’ and ‘most patients’ can be used. The danger of inappropriately raising expectations with too much detail was recognised: care profiles relate to an average patient rather than all patients.7 ,11 Some limited information could be required from measurable outcomes, consumables and limiting factors.7
Because patients and carers have a right to know about their health and care, information should err towards being comprehensive, be as simple as possible, keep to the crux of the matter and be presented in clear language with no jargon. Reference was made to information prescriptions,20 which enable information on diseases, treatments and services relevant to an individual's needs to be accessed/downloaded and collated from a central database of national and local data.
The basic ACP approach involves dialogue between the professional and patient (and carer), with reassurance given that the patient will receive the care and services required when needed, and that they will be of an appropriate (high) standard. Preparing ACPs involves an ongoing process, rather than being a ‘one-off’ event: the lead professional (most often a district nurse) interviews and assesses a patient, and determines individual care needs and information requirements. The lead professional then looks to obtain the required information and collate it for the patient (which is consistent with information prescriptions).20
There was consensus that there is no real difference in the information requirements of patients in care homes and in their own homes. However, allowance needs to be made for how care home staff might interpret any such information.
Findings: detailed matches between EoL care profiles and ACP requirements
The small group work found the following.
Dealing with patients and carers
The initial visit to the patient and carer at the beginning of Stage B, when it has been confirmed that the patient probably has no more than 6 months to live, is normally when the ACP is initiated (although the process may start at diagnosis). This should be concise and reassuring, and garner sufficient information from the patient and carer to enable the professional to then gather tailored information for them: patients and carers do not know what they do not know. As such information must follow the initial assessment, professionals should have leaflets they can readily give to patients and carers, if required. These should be brief and provide information to support discussion and communication, including details about the full range of health, social care and voluntary services available locally.
It is essential that professionals know what services are available (locally), but they cannot be expected to know up-to-date details of all services over potentially a wide geographical area. Care profiles represent a good guide for professionals to be clear on how (at least) mainstream services will be delivered.
Information given to patients and carers should address common questions (eg, about what syringe drivers are for and when they are used) and rectify common misinterpretations (eg, the role of hospices). Such information can equally be useful for educating staff. In a care home environment, the matrons could act as educators and facilitators in relation to how relevant information can and should be used.
It is important that any information given to a patient and carer is explicit about any limitations that can apply to the care delivered; otherwise, there could be false or inappropriate expectations. This should be seen in the context of there being honesty between the professional and patient. Recognition needs to be given to variations between patients; a young patient with cancer has to be dealt with differently to an old person with dementia. The over-riding principle is that correct information should be given at the right time to enable the patient and carer to make choices (where appropriate).
Management and presentation of information
In presenting information, some standardisation of format is desirable, not least to help professionals make the best use of it and satisfy themselves that it is complete. Similarly, standard formats for ACPs are desirable, given that they may need to be kept alongside other patient documentation and by the patients themselves.15 ,21
Information should be presented as positively as possible, that is, the emphasis should be on what can be provided rather than what cannot be provided. Also, diagrams and flowcharts can often be better or preferable to words. Multilingual versions of any information are required to respond to cultural diversity, with suitable allowance made for religious beliefs. Similarly, versions should be made available in large print and Braille.
The responsibility for producing and maintaining relevant information at patient-level should be with the key worker, who determines the patient and carer information requirements, and delivers the requisite information. Any supporting database should be electronic (as with information prescriptions),20 with someone/some agency having clear responsibility for ensuring it is up-to-date, and informing professionals of updates on an ongoing basis.
Patient and public involvement
The Government's White Paper3 emphasised ‘putting patients and the public first’. Patient involvement improves patient satisfaction and is rewarding for professionals. Public involvement influences planning and services, and increases confidence and understanding.22
Intrinsically, there are emotional and cultural difficulties when developing PPI for EoL services. A national pilot project examined how best to take forward the PPI agenda for EoL services. It found that PPI in EoL care is of critical importance to everyone in society, as all will experience this at some point in their lives. Despite the clinical and care differences between the three main causes of death, viz, cancer, dementia and long-term conditions, there is not necessarily any great difference in how commissioners should handle PPI for EoL care across these groups, except in terms of timing. It is better to engage with people about EoL care during the early stages of their condition, on a primarily prospective basis, rather than delay engagement until when it could be intrusive or inappropriate.23
PPI arrangements for EoL should be prepared to consult widely about EoL with the general public, rather than just people directly involved with EoL care at any one point in time. This is because most people, particularly in middle age, have experienced someone close to them having died, and people often remember their experiences very well.23
Given wide variations in local EoL services across the UK,5 local context is critical to any PPI; for any PPI to be successful and meaningful, there must be clear information about the local services commissioned, with a sufficient level of detail, irrespective of the means or media of engagement and involvement. The majority of EoL patient activity is in the community, and EoL care profiles give an essential patient-centred perspective of related, locally commissioned community services.
The above ACP workshop findings can directly support PPI: information that is suitable for patients and carers about available local EoL services will be suitable for members of the public for the same purposes. Naturally, the amount of information, level of detail and means of presentation will need to be tailored to meet the specific and varying audiences and PPI delivery arrangements, which will vary between areas. The national pilot proposed that commissioners should look to utilise existing third sector patient/service user groups.23 This could engender innovation, as different approaches are applied in different countries. These include community engagement teams in Canada,24 professional volunteer programmes25 and major country-wide programmes such as Respecting Patient Choices (in respect of ACP)16 in Australia. Approaches to PPI need to be tailored to cultural issues, for example, many Chinese do not want to talk about death.26 There is also the risk of marginalisation for cross-disease services, such as those for EoL, where PPI arrangements are developed along disease group lines, such as cancer.
Commissioners would need to work with any third parties to agree how required information can be provided and presented. The virtuous circle is then achieved by the responses from PPI informing improvements in the EoL services commissioned, which result in updated care profiles for the community services, with reprocurement or revised contracts negotiated accordingly.
‘Extensive discussion’ is a key determinative requisite for an integrated approach to ACPs,17 and ACPs engender positive outcomes where there are discussions among professionals, patients and carers about personal preferences.27 EoL care profiles support such discussions by providing a consistent, quality information reference about available services, giving a level of detail that might otherwise not be apparent.
The adoption of ACPs, and associated PPCs, can lead to reductions in the number of people dying in hospital, which should enable savings through reduced (inappropriate) admissions. An evaluation of introducing EoL tools into dementia care homes found that all patients with ACPs died in their home, and accounted for 83% of deaths in the homes. All patients who stated that they wished to die in their home died in their home, and all those that stated they wished to die in hospital died in hospital.28 (Information for PPCs was not discussed per se at the ACP workshop, as the focus was on what information should be made available to patients and carers and how this should be delivered; PPC is a choice to be made once patients and carers have received information.)
The importance of ACPs to commissioners is that they can be used to identify service deficits,29 and influence the use of resources. Unfortunately, ACPs are not used as widely as they might be, with varying regulations in different countries.17 Also, acknowledgement of patients' ‘right to decide’ can be inconsistent with actual practice,17 and the adoption of ACPs can place great pressure on professionals, compounded by a ‘lack of time’ and the unrealistic expectations of the patients' families.27 Yet, the role and contribution of the (lead) professional is critical to the successful implementation of ACPs,17 and they should describe treatments and probable outcomes with sufficient detail to assure understanding.30 Otherwise, patients and carers may be unable to visualise them and therefore be poorly prepared to formulate preferences that reflect their values and interests.30 This is central to the stance ‘No patient faced with a significant decision about their healthcare should decide in the face of avoidable ignorance’.4 Consequently, the (early) provision of information about commissioned services, including standard leaflets, should make the best use of professionals' time and help manage expectations. It should also enable the better use of ACPs and greater person-centred care, which increases professionals' personal satisfaction.27 Therefore, it is arguable that using EoL care profiles to commission services provides detailed local information that can act as a catalyst for the greater and better application of ACPs, which in turn enables improved outcomes.27 Equally, the degree to which ACPs are applied locally can dynamically influence commissioning,29 the EoL care profiles themselves (as will benchmarking ‘best practice’)7 and the relationship between care delivery and the palliative care tariff.5
Information prescriptions20 provide information to support people with long-term conditions to take care of themselves and improve their quality of life. At the time that this feature was written, national information prescription data for EoL and bereavement focused on: bereavement; information about dying; caring for a dying person; after a death; legal and financial issues; and coming to terms with loss. Local information prescription data summarised what local service providers had to offer.20 None related to what EoL services were commissioned by a Primary Care Trust. Arguably, information prescriptions20 mainly focus on conditions rather than pathways. Therefore, information from care profiles addresses a current gap in describing services specifically commissioned locally across the whole EoL care pathway, and complements existing data.
The cross-sector approach of an EoL care profiles programme, bringing together commissioners, clinicians, local stakeholder and service user representatives is exactly that required by NICE.2 The approach is also person-centred in that it defines what services, across the care spectrum, an average patient would be expected to receive at a particular stage of disease process.7 As has already been highlighted, EoL care profiles provide the requisite detail of services to enable preparation for the introduction of national per patient tariffs for palliative care services in 2015.5 They also support PPI, and improved engagement should lead to improved EoL services, and better experiences for patients, through greater choice, control and involvement in care, thereby facilitating a dignified experience of death.23
It follows from the above that EoL care profiles represent a practical and pragmatic commissioning tool which can act as a first step to defining, redesigning and developing local services, with the process itself entirely consistent with NICE guidelines.2 The results can underpin preparation for palliative care tariffs,5 and enable improved information about commissioned services for the public, professionals and patients/carers. A benefit of the latter should be improved take-up of ACPs, which should facilitate improved quality and outcomes,28 ,31 with feedback serving to update and improve commissioned services. This, together with benchmarking against EoL care profiles from elsewhere, should enable a virtuous circle over time.7
To help promote and develop care profiles for EoL, and other services, Edge Hill University set up the Care Profiles Development Programme, within the Faculty of Health and Social Care, for the explicit purpose of maximising their use and impact through research and affordable teaching, training and consultancy. This encompasses costing the care profiles, benchmarking them between users, and establishing how best to integrate them into audit and quality processes, so that positive patient outcomes are delivered.32
EoL care profiles enable local services to be commissioned in detail, which is a catalyst and essential precursor for an inclusive and explicit approach to planning and resourcing services for individual patients and the population as a whole. They can also contribute to and inform the development of ACPs. By ensuring clarity, they enable quality information which in turn has positive benefits for professionals, patients and carers and makes PPI meaningful.
The authors would like to acknowledge the contribution of Jean Rogers, Commissioning Manager, End of Life Care, Liverpool PCT, in relation to the development of the EoL care profiles and subsequent initiatives, and Sue Ashton of Liverpool John Moores University for her advice in respect of Advance Care Planning. They would also like to thank everyone who participated in the workshop. Particular thanks are expressed to Tilly Reid of Woodlands Hospice for kindly providing the facilities and the refreshments for the workshop, and Margaret Parkinson of Liverpool Community Health and Barbara Burkey from the Cheshire & Merseyside Cancer Network for their help with inviting people.
Funding The work relating to this feature was unfunded, including the workshop where the relationship between End of Life Care Profiles and Advance Care Planning was explored. The use of facilities and the refreshments for the workshop were kindly provided at no charge by Woodlands Hospice.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
Data sharing statement The nature of the feature article mostly involves a review of literature including the paper about End of Life Care Profiles recently published in Primary Health Care Research & Development, and the paper about PPI and End of Life services recently published in the British Journal of Health Care Management and then establishes how a Care Profiles approach can support key End of Life services objectives. The only empirical data are the outputs from the workshop that focused on using information from the End of Life Care Profiles to support Advance Care Plans. The accuracy of these notes was endorsed by all who attended. A copy of the notes, suitably anonymised, can be made available, if required, from the corresponding author.
- Received 8 February 2012.
- Accepted 9 June 2012.
- Published Online First 2 August 2012
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