Abstract
Introduction
The provision of appropriate and acceptable palliative and end of life care is a major policy priority nationally and internationally, but in practice there are many obstacles to delivery of care that meets these criteria. Despite the fact that research in this area has historically been quite poorly funded, many important insights have nevertheless been produced. A major element in end of life care concerns preferences for place of death. Research focusing on eliciting the views of patients and analysing patterns of care has identified that a large number of people die in hospital, when this is not their preferred place of death. Furthermore, research has revealed that there are often limited opportunities for people to express their wishes for end of life care due to shortfalls in accessing advanced care planning and because professionals are often ill-equipped to discuss such plans with patients. By understanding the barriers to achieving preferred place of death, by facilitating communication and planning and by influencing policy on end of life care, research has helped to address this important issue, improving the match between what people want at the end of their life and what the healthcare system delivers.
Palliative care is defined as an approach that improves the life of patients dying from progressive or incurable conditions and their families/carers. New models of palliative care pharmacy services have emerged from research that identified shortfalls in the information that patients and carers received in relation to medication in parts of Scotland. Improvements in the information and training provided for health professionals were also facilitated. Improvements in the quality of palliative care have been facilitated by the development of a tool (Palliative care Outcome Scale) that measures, across a wide range of dimensions, the needs of patients at the end of their lives. Embedded in clinical practice and adapted for differing cultural contexts, it has been used to set and improve standards for palliative care nationally and internationally.
Significant improvements in respecting and achieving people’s preferred place of care and death at the end of their lives
Summary
Research has transformed how people’s preferences are respected, supported and achieved at the end of their lives. It has driven policy for end of life care nationally and internationally, with a cascading impact on clinical practice and training and has also helped to reduce institutionalization at the time of death despite an ageing population. An integrated research programme identified dying at home as an important and often unmet preference, highlighted barriers that must be overcome to enable this to happen and identified aids that could help people at the end of life to achieve their preferred place of care and death.
Research and impact
An investigation of more than 1.3 million cancer deaths in England between 1985 and 1994, to identify and examine patterns in place of death, revealed that the proportion of people who died at home remained around 26% over this period, albeit with some geographical and gender-based variation. For those who did not die at home, the number who died in an NHS hospital or nursing home fell, while the number who died in non-NHS hospitals, nursing homes, hospices and communal establishments increased. 1 Further population-based research found that older people, those living in deprived areas, of a lower socioeconomic status, and from ethnic minorities were less likely to die at home. 2 Patients under the age of 15 were also less likely to die at home if they came from a lower social class or lived in an area with a high rate of childhood poverty. 3 Researchers investigated where people would like to die when given the choice and found that most people with advanced cancer would prefer to die at home. 4 Yet despite this preference, only half the people who wanted to die at home actually did so. 5
Further work analysed international variation in end of life care, using data on 1.5 million cancer patients across 13 countries. Dying at home was more common among patients who had received intensive home care, lived with relatives, had access to an extended family support network or had a clearly stated preference to die at home. 6
A collaboration with the US National Centre for Health Statistics facilitated comparison of home death rates in London with those in New York for more than 110,000 individuals over 40 years of age. While the overall likelihood of dying at home was similar in both cities, fewer women and those of an older age died at home in London than in New York. 7
The healthcare and economic implications of current and future end of life trends have been examined by developing models to predict the impact of place of death decisions on the NHS and other healthcare facilities. These models predicted that fewer than 1 in 10 people will die at home if current trends continued. This would require a 20% increase in the number of available hospital beds, placing a major burden on existing healthcare infrastructures. 8 These findings, which were the first of their kind to be undertaken, highlighted the need for ongoing efforts to improve the rights of patients at the end of life to die in their place of choice, often in the home environment.
Three main areas of impact have been demonstrated from the programme of end of life care research. First, it has changed awareness and strategy, leading to place of death becoming a core policy measure. Achieving home care and death in advanced illness, if preferred, is reflected in the Department of Health’s (DoH) End of Life Care Strategy, and researchers were part of a DoH advisory group that produced a report citing the majority of the references to the research. 9 The National Audit Office used it to highlight the need for home care. 10 As a result, the DoH commissioned the development of the End of Life Care Intelligence Network (ELCIN) to ‘improve the collection and analysis of information related to the quality, volume and costs of care provided … to adults approaching the end of life’, 11 including resources authored by the researchers. Place of death has become a key measure reported in ELCIN locality and regional profiles and in their Mapping Tool, they use the format developed from the research in order to report profiles for local areas.
Second, research has changed where people die and better meets their preferences for place of death. The NHS has developed a National End of Life Care Programme to implement the End of Life Care Strategy by ‘working with health and social care staff, providers, commissioners and third sector organisations across England to improve end of life care for adults’. 12 A recent analysis of place of death found that the trend of a reduction in home deaths is showing a sustained increase in numbers of people dying in their place of choice 13 and a reduction in hospital deaths, 14 suggesting that the programme has enabled more people to die at their preferred place of death.
Third, the research on place of care and death has been used and cited by charities and patient-based organizations in policies and reports, including: the ‘Independent Palliative Care Funding Review’, an independent report for the Secretary of State for Health, which sought to develop a per-patient funding mechanism for palliative care; the King’s Fund, report ‘Issues facing commissioners of end-of-life care’, which discussed how more people dying at an older age in 2030 will impact on the level and intensity of provision required, as well as changes in the way that services are commissioned and the National Council for Palliative Care, an umbrella charity, in their reports including ‘Commissioning End of Life Care’, ‘A 2030 Vision’ and ‘Policy Roundup’.15–17 The research has also been used by international bodies in Europe and Australia, which have cited key authors or based new initiatives on research results.18–20
Acknowledgements
Institutions listed as contributors to the research: King’s College London.
References
Improving understanding, implementation and uptake of advance care planning for end of life care
Summary
A programme of mixed-methods research has enhanced the understanding, implementation and uptake of advance care planning (ACP) for end of life care, shaping public policy and influencing national initiatives that have improved quality of life and reduced the number of deaths in hospitals. The research has guided professional practice, educated care staff and contributed to a more positive public attitude towards talking about end of life issues. It has had national and international influence.
Research and impact
Up to a third of UK citizens suffer during a final illness because of an absence of palliative care assessment and a lack of opportunity to express their wishes for end of life care. A long-term programme of research has addressed this issue through ACP. Work in this field has been of particular relevance in the UK given significant changes introduced by the Department of Health’s end of life care policy (End of Life Care Strategy, 2008); and in law by the 2007 Mental Capacity Act, which gave legal status to advance decisions to refuse treatment and nominations of lasting powers of attorney.
A three-year, three-phase study to develop and evaluate peer education in advance end of life care planning identified concerns and information/education needs among different stakeholders, including health and social care staff and older people. Focus-group discussions and follow-up workshops revealed community nurses’ attitudes towards ACP and their perceptions of the barriers towards its successful implementation. 1 An examination of the links between sexual orientation and concerns about end of life care highlighted the difficulties experienced by marginalized groups of older people. 3 The latter resulted in a commission from the National End of Life Care Programme (NEOLCP) for a knowledge-exchange project to improve practice. Following consultation with LGBT people and those who work with them, evidence briefings and national guidance were developed including a Route To Success guide. 4 This was launched at a national conference on the subject in 2012, attended by over 100 policy makers, practitioners and other interested individuals. Almost 700 copies of this guide have been distributed to individuals and organizations since its launch in 2012. Evaluative data indicate the majority of users have both changed the way they work with LGBT people and are seeking to change the way colleagues practise.
Study participants felt initiating discussion about ACP difficult but important and wanted more information and guidance to help tackle the issue. Researchers trained lay and staff volunteers as ‘peer educators’ in ACP, with a longitudinal qualitative evaluation showing two-thirds reported peer education activities a year later. 5
A multi-site longitudinal survey of the care of patients with palliative care needs highlighted the factors influencing the initiation of conversations about end of life care. 6 Patient participants showed varying degrees of reticence, evasion or reluctance to initiate conversations about end of life care preferences, usually assuming that carers would take the lead – but staff were themselves often hesitant to do so. Staff-identified barriers included the perceived risks of taking away hope and issues of timing. The study was a pilot for a larger community-based study.
Research into communication and decision-making in rehabilitation examined how practitioners raise sensitive issues and encourage involvement in decision-making. 7 The findings have since been used to develop interventions to help staff talk to patients about advance end of life care plans.
Major policy initiatives have been guided and influenced by the research messages that have emerged from the overall research programme. First, the Department of Health’s 1 End of Life Care Strategy, launched in 2008 and led by the National End of Life Care Programme, consulted the researchers and cited the research, which has been acknowledged by senior health officials as being extensive and innovative, providing a foundation upon which further work and research has been based. As noted earlier, the implementation of this strategy was associated with a reduction in the number of people dying in hospital and an increase in the number dying in their usual place of residence. 8 Second, the research informed the work of Dying Matters, a national coalition established by the National Council for Palliative Care to raise public awareness of and debate about ACP. The coalition drew on the expertise of researchers to help shape its campaign and priorities and to collaborate in disseminating key findings and messages. 9 The coalition has gained 20,000 members and has been noted for making major strides in engaging the public and tackling the taboo of discussing death and dying.
The research has made further impact in the area of education and training. Researchers produced an educational guide about ACP in collaboration with the Dying Matters coalition and the National End of Life Care Programme and is now available in seven languages. An independent evaluation found that it was used by a wide range of healthcare professionals and accessed by service users directly. 10 Users reported that it helped facilitate otherwise ‘difficult’ conversations. Building on this, a volunteer training programme about ACP was developed in response to a request made by the same two organizations, published in 2011, 11 with significant uptake in London, Devon and the Midlands, training a number of volunteers in the NHS and in hospice settings.
The research has informed professional practice. The Royal College of Physicians’ 2009 evidence-based guidelines for ACP cited the findings. 12
The research also formed the basis for the establishment of the International Society of Advance Care Planning and End of Life Care, a partnership between healthcare professionals and academics that has more than a thousand members and the study on peer education was cited as an exemplar in the 2011 World Health Organisation guidance for palliative care and older people. 13 Research has been used elsewhere in Europe, including by the European Union Geriatric Medicine Society and the International Association of Gerontology and Geriatrics (European Region) for lobbying the European Commission/Parliament and informed a European Council Symposium on the end of life decision-making process. Researchers have been involved in various policy discussions in Europe, as well as in commissions from Help the Hospices, including one run by the cross-party think-tank DEMOS.
Acknowledgements
Institutions listed as contributors to the research: The University of Nottingham; and also the Universities of Aberdeen, Lancaster and Manchester.
References
Improving palliative care through better engagement of community pharmacies
Summary
The care of patients with palliative care needs living in the community in areas of Scotland has been improved by research that led to the design of a new clinical pharmacy service model, centred on community pharmacies (CPs). This development facilitated better provision of information for patients and their carers, and new training resources and staff development opportunities for the multi-disciplinary palliative care team. The service model has been rolled out across the NHS Greater Glasgow and Clyde Health Board (NHS GGC – 1.2M population) and is being explored for roll out in parts of a rural Health Board in Scotland. The research has informed specific programmes of Macmillan Cancer Support UK, pharmacy workforce planning and the Boots Macmillan Information Pharmacists initiative.
Research and impact
In 2009, an NHS GGC report found that whilst the majority of patients’ palliative care needs were met, gaps in service delivery, notably around timely access to medication, still existed. This potentially affects around 10,500 people annually who require access to palliative care services. Macmillan Cancer Support in collaboration with NHS GGC appointed a team including four Macmillan Pharmacist Facilitators, aligned to defined local community healthcare partnerships (CHCP), to design and deliver a new clinical pharmacy service, centred on local community pharmacies (CPs). Research aimed to support the development and the evaluation of the new model of service provision, as well as extending the limited literature on clinical pharmacy palliative care services in the primary care setting.
The research evidenced for the first time in NHS Scotland a conceptualized clinical practice model and capacity planning framework for CP palliative care services. The research comprised three key phases of work 1 :
Phase 1 involved the characterization of palliative care services in the four CHCPs (total population ∼430,000) through a self-completion questionnaire (112 CPs and 107 general practices (GPs)) and a series of focus groups and interviews (51 healthcare professionals, 21 patients/carers).
2
The findings identified a range of issues and gaps:
Variable communication between healthcare professionals, and across healthcare settings (e.g. difficulties for CPs to fulfil prescriptions in a timely way, particularly of pain medication). Absence of concise and up-to-date palliative care resources and information for health professionals and patients (e.g. gaps in GPs’ knowledge of palliative care medicines used in uncommon indications and unusual strengths). Limited patient/carer knowledge regarding the prescription and supply of some palliative care medicines (e.g. conditions surrounding supply of controlled drugs).
Phase 2 used the above findings to inform the development of a quality improvement programme implemented by the Macmillan Pharmacist Facilitators focused on three key areas: the development of information resources for patients/carers and the multidisciplinary team 3 ; the identification of effective networking and communication strategies within localities and across NHS GGC and the development of resources and training for healthcare professionals. The research involved further in-depth interviews with patients/carers to investigate their specific information needs on medicines in order to inform patient/carer information resources. Additional new resources were generated and deployed including: an education programme for pharmacy support staff; prescribing aids for GPs and palliative care pharmaceutical care plan documentation.
The capture of project activity over the two-year evaluation enabled a detailed analysis of CP clinical practice and informed the construction of an evidence-based model set within the current palliative care policy and practice frameworks for NHS Scotland, constituting phase 3 of the research. The model identified three key functions as important to the delivery of effective pharmaceutical palliative care services: the role of CP, interface/facilitator activities, and leadership and team co-ordination/administration. It also mapped the key roles for each function to generate a capacity planning model, an area where there is currently no published work. 1
The research has influenced health policy and practice. The evolved service model is aligned to the NHS Scotland policy frameworks in pharmacy and palliative care to maximise the complementary contributions of the multidisciplinary team and ensure CP teams play a central role in supporting the safe and effective use of medicines for patients and their carers.
4
NHS GGC has initiated the roll out of the service model to all 10 CHCPs, covering around 1.2 million population, to improve access to palliative care medicines and information provision from the 314 CPs across NHS GGC by 2013. In 2013, NHS Highland appointed a Macmillan Pharmacist Palliative Care Rural Practitioner to explore the applicability of the service model to a remote and rural community (13,000 island population). The findings have been used to inform specific work programmes. For example, the capacity planning model is informing the pharmacy workforce development programme within Macmillan Cancer Support; and are also used by the Royal Pharmaceutical Society as evidence of good pharmacy practice and innovation.
5
New resources for patients and carers have been developed, based on the results of the research. Information leaflets that contain details of how to source medicines that are not routinely available are now provided to patients/carers. This has empowered patients to better assist healthcare professionals in accessing medicines and thus reducing delays in care provision (e.g. levomepromazine 6 mg tablets for severe nausea and vomiting – an unlicensed formulation used in palliative care). The findings have informed the development of the UK Boots and Macmillan Partnership which by mid-2013 had recruited over 1000 UK Boots Macmillan Information Pharmacists who have been provided with Macmillan resources (in part informed by the research) to better support patients and carers in the community.
New resources and staff development opportunities for palliative care teams have also been developed. A comprehensive Palliative Care Resource Folder was developed and distributed to all 314 NHS GGC CPs in 2011. 6 The folder was also made available through the Scottish Palliative Care Pharmacists Association to all NHS Scotland Health Boards. Through the Macmillan UK network, requests for the folder have also been received from elsewhere in the UK. An information leaflet (signposting CP services and advice available) was designed and distributed to all 314 CPs, 260 GPs and other primary care settings across NHS GGC.
A new face-to-face training programme was designed for pharmacy counter assistants and dispensing staff to support engagement with patients/carers and healthcare professionals to improve supply of medicines and palliative care advice services and a new e-learning resource on palliative care for support and counter staff in CPs, and GP receptionists and support staff working in care homes was commissioned by NHS Education for Scotland (NES) and made available nationally. 7 A Prescribing Aide for GPs to assist with appropriate and legal prescribing of end of life medicines was distributed to all 260 NHS GGC GPs in 2011. This saw improvements in patient safety and a reduction in medicines wastage and staff time.
Acknowledgements
Institutions listed as contributors to the research: University of Strathclyde.
References
Improved palliative care locally and globally due to development of the Palliative care Outcome Scale
Summary
Researchers developed, refined and validated the Palliative care Outcome Scale (POS), a tool that measures the physical, psychological, spiritual and information needs of patients at the end of their lives and their families. The POS has made an impact on clinical competencies and knowledge, and has underpinned an international collaboration to develop standards for palliative care outcomes. The POS is embedded increasingly in everyday clinical practice, improving the care of patients affected by advanced conditions and providing support for their families. Widely used regionally and nationally in the UK to evaluate and improve the quality of care, the POS has been culturally adapted for use internationally.
Research and impact
In clinical practice, traditional ways of assessing patients, by measuring their pulse rate and blood pressure and by scans and examining their physical functions, fail to capture aspects of health and wellbeing most important to patients with advanced diseases or approaching the end of life. Historically, screening, clinical practice, auditing and monitoring progress were restricted because clinical assessment was highly variable. The POS has transformed clinical assessment and improved the measurement of outcomes in palliative care.
The initial version of the POS was a 10-item form that captured physical, emotional, social and spiritual concerns in palliative care that affect patients and their families. Specifically designed to integrate clinical assessment and care, the POS was made available in two formats: a self-report version for patients and an observational report for staff to use when patients are too ill to self-report.
To refine, scientifically evaluate and maximise the usefulness of the POS in clinical practice and research, researchers undertook empirical studies of patients with advanced diseases, their informal carers and healthcare staff across eight UK hospice, hospital and homecare facilities. The team collected data from 337 staff and from 148 patients with advanced cancer. The study was one of the largest of its time involving profoundly ill people. The findings showed that the POS was reliable. 1 An additional version for patients’ families or their unpaid caregivers to complete was also developed and in the course of the study, it was found that caregivers’ positivity and burden affected their assessments. Awareness of the influence of carers’ positivity and burden can help clinicians and researchers better interpret caregiver assessments. 2 An additional module, the POS-S, was also developed to assess symptoms. The validation of this module included neglected populations, such as patients with multiple sclerosis. 3
Subsequent collaborative research refined and validated the POS through clinimetric tests and comparison with two other palliative care outcome measures. The research involved 140 palliative day-care patients. The patients identified positivity, self-sufficiency and symptoms as aspects that should be measured to assess the quality of life in advanced cancer. The aspects identified by patients are incorporated in the POS and confirm its relevance. 4 Further collaborative research, with colleagues in Germany 5 and Argentina, 6 among many others, led to validation of the POS for other diseases, and in other settings, languages and cultures. Further validation in eight eastern and southern African countries involved 682 patients and 437 family carers. 7 Confirmatory and exploratory factor analyses involving 231 British patients has confirmed that the POS measures holistic care across cultures and that the POS is clinicians’ preferred measure of outcomes in palliative and end of life care. 8
The POS has led to substantial improvements in the quality of care for patients with advanced diseases, both nationally and internationally. It has helped patients and their families to access holistic palliative care. An independent assessment of the POS showed that it helps patients and families receive the best care available and enables care teams to quickly tailor care to needs. The POS data were also used to advocate for palliative care. 9
Researchers launched the POS website which provides downloadable versions of the POS, guidance on its use and links to publications related to the POS. This has been accessed extensively and over 1000 individuals, groups or organizations from 74 different countries registered as POS users; and the POS has been identified as one of the four most commonly used measures for clinical care, audit, training and research in Europe and Africa. 10 The POS is used for many diseases, including HIV/AIDS, neurological conditions, cancer and chronic obstructive pulmonary disease.
In the UK, the government, NHS and independent sources have recommended use of the POS. The Department of Health (DoH)’s ‘End of Life Care Strategy’ drew on the research to help compile key elements of end of life care; and the DoH Palliative Care Funding Review recommended that development of outcome measures for palliative care should be based on Australian work on patient outcome measures and the POS.11,12 Other endorsements for using the POS have been made across the NHS nationally and at local levels.
A European Commission funded project, led by key researchers coordinated the use of the POS across Europe, compared experiences and best practices, and optimized research through a strategic cross-national approach and POS has since been cited as a preferred tool in palliative care. 13 The Recommendation Rec (2003) 24 of the Committee of Ministers of the Council of Europe to member states on the organization of palliative care 14 also names the POS as a tool for strengthening palliative care throughout Europe.
The POS is used by clinical practitioners in at least 44 countries; it has been translated into 28 languages spanning Europe, Asia, South America and Africa; the Thai version of the POS is being used across the public health sector; the Vietnamese version in a project to determine the most prevalent and severe symptoms among patients with cancer and HIV/AIDS.15–18 Collaborative research in Africa has led to widespread use of the POS and it is now the most commonly used patient-level outcome measure in Africa: it has been extensively translated and is endorsed in official handbooks; and used in quality assessment, accreditation and standard setting of services.19,20
Acknowledgements
Institutions listed as contributors to the research: King’s College London.
References
This Palliative Care and End of Life Care themed article is based on the following case studies all available for download at: http://impact.ref.ac.uk/CaseStudies/:
Significant improvements in respecting and achieving people’s preferred place of care and death at the end of their lives – http://results.ref.ac.uk/DownloadFile/ImpactCaseStudy/pdf?caseStudyId=41308 Improving Understanding, Implementation and Uptake of Advanced Care Planning for End of Life Care – http://results.ref.ac.uk/DownloadFile/ImpactCaseStudy/pdf?caseStudyId=27118 Improving palliative care through better engagement of community pharmacies – http://results.ref.ac.uk/DownloadFile/ImpactCaseStudy/pdf?caseStudyId=42290 Improved palliative care locally and globally due to development of the Palliative care Outcome Scale – http://results.ref.ac.uk/DownloadFile/ImpactCaseStudy/pdf?caseStudyId=41309