A detailed health needs assessment (HNA) for end-of-life care (EoLC) services was led by public health in Leeds to inform a commissioning strategy. To answer the question: are we delivering the best possible EoLC services within the resources available? Mixed methods were used with three approaches: epidemiological, corporate and comparative. More people from deprived communities die in hospital. 18% of people who die each year are on a palliative care register, reflecting a lack of recognition and planning for EoLC given that 75% of people who die need EoLC. Over 100 staff, patients and carers were interviewed and over 200 staff returned questionnaires. Staff highlighted concerns about capacity of services; pressure on out-of-hospital care; problems at physical and electronic interfaces between services; suboptimal hospital discharge; need for earlier recognition of the EoL stage for patients. Patients and carers stressed the importance of communication, coordination and continuity of care; full involvement in care planning; honesty and support for the bereaved; an advocate for patients and families; accessible information; improved urgent care; integrated team working; pain relief, dignity and respect. Issues from comparator sites included the need for sustainable leadership for change, lack of interoperability between IT systems; building advance care planning into working culture; gaps in psychological services, bereavement and pastoral support; integration within all clinical areas; lack of district nurses; few investment opportunities; getting home care support right; concerns about 111; incentives for general practitioners to deliver EoLC; variability in service and the Liverpool Care Pathway controversy. Ethical approval was not sought as the HNA was undertaken as a service evaluation. Local policy is that ethical approval is not required for service evaluation.
- palliative care
- public health
- needs assessment
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The Department of Health has published guidance stating that all local authority public health departments in England should provide public health advice to Clinical Commissioning Groups (CCGs) free of charge.1 This may provide opportunities for commissioners in other areas responsible for end-of-life care (EoLC) services to secure specialist public health input to support their service improvements. Three CCGs working collaboratively in a large city in the north of England commissioned the local authority public health team to undertake a detailed health needs assessment (HNA) for EoLC services in order to develop an evidence-based commissioning strategy to meet the identified needs. This paper describes the HNA and discusses the contribution public health approaches can make to improving palliative care.
To answer the question: are we delivering the best possible EoLC services within the resources available?
HNA is a core public health skill used to systematically identify unmet health and healthcare needs of a population. Three complementary approaches were taken: epidemiological, comparative and corporate.
The epidemiological HNA analysed published data to describe the epidemiology of dying in the city and used these data to estimate future need.
The corporate HNA mapped service provision in the city including an in-depth review of two hospices. Fifty-seven staff and 51 service users or carers were interviewed. General practitioners (GPs), district nurses, care home managers and sheltered housing wardens were surveyed. A total of 197 surveys were returned with a mean average response rate across the professions of 25.7%.
The comparative HNA compared key data with six other cities: four comparators and two outliers in terms of low rates of deaths in hospital. Semistructured interviews were undertaken with commissioners from comparator sites.
In 2011, 48% of people over 18 years in the city died in hospital (ONS, 2011). The most common causes of death for adults over 65 are circulatory disease (30%), cancer (28%), respiratory disease (15%) and dementia (9%). Both cancer and non-cancer deaths for over 65 year olds are expected to rise by 16% between 2011 and 2031 from a baseline of 1836 and 4523, respectively. A higher proportion of people living in more deprived communities die in hospital compared with people living in affluent communities. More people from affluent communities die in care homes and hospices. There was no pattern relating to deprivation in the proportion of people dying at home. Only 0.14% of people are on a palliative care register (PCR) which is a small proportion of the 0.8% of the city's population which dies each year and compares poorly with the national figure of 0.17% on a PCR.
The majority of specialist palliative care (SPC) is provided by the teaching hospital SPC team and two independent hospices. EoLC is also provided by district nursing, specialist (disease-specific) community nurses, community matrons, care homes, the mental health trust, adult social care, continuing healthcare, the ambulance service, sheltered housing, GPs, pharmacists, the local out-of-hours primary care provider, bereavement services, the equipment service and independent sector domiciliary care providers.
Themes that emerged from staff interview and survey data were: high levels of personal motivation and skill among most staff; concerns around the lack of capacity of services; increasing pressure on out-of-hospital care; patchy out-of-hours care; problems arising at physical and electronic interfaces between services; concerns around hospital discharge; need for earlier recognition and acknowledgement of the EoL stage and concerns around the preferred place of death target and meaningful patient choice.
Themes emerging from the interviews with patients and carers were: the importance of communication, coordination and continuity of care; full patient and carer involvement in care planning; honesty, and support for the bereaved; the need for an advocate for patients and families; accessible information; improved urgent care; integrated team working; pain relief management and maintaining dignity and respect. These themes echo the local findings within the national VOICES survey.2
A comparison using the NEoLIN data3 shows the city has less hospital deaths and more hospice deaths than other comparator areas apart from the two outliers. However, the city also has the second lowest proportion of deaths at home.
Comparator sites provided fresh examples of ways of working, including:
National Health Service (NHS) commissioned palliative care beds in care homes, commissioned from local hospices using the NHS contract.
A nurse-led hospice.
A hospice at home service.
Greater voluntary sector provision.
A rapid response team.
‘Just in case’ anticipatory medicine boxes.
The same IT system across the patch.
A local Public Health Observatory providing performance management data.
Issues raised by comparators included lack of interoperability between IT systems; building advance care planning into routine working culture; reliance on single passionate individuals to lead innovation and change; gaps in psychological services, bereavement and pastoral support; EoLC integration within all clinical areas; lack of district nurses; few financial investment opportunities; getting home care support right; ensuring if a person chooses to die in hospital it is a good experience; concerns about 111; no incentives for GPs to deliver EoLC; variability in service and anxiety relating to the Liverpool Care Pathway controversy.
The absolute number of people who will die is increasing as health needs at the end of life are becoming more complex. More people living in single or all-pensioner households will be dying and the preference to die at home coupled with the agenda of care outside hospital combine to make planning quality EoLC services in the community imperative. District nursing teams are too stretched to deliver all levels of EoLC required and GPs would like to spend more time delivering EoLC but do not have the capacity to. More people express a preference to die in a hospice than have SPC needs; there is a gap for hospice type care for people without complex palliative care needs.
One purpose of understanding the epidemiology of dying is to be able to predict need, converting population projections into service requirements. Most published evidence relating to projecting needs for EoLC services focuses on health service usage and therefore measures comparative demand as opposed to need.4–6 Provision of EoLC services in the city is in line with levels these studies recommend, however results from the corporate HNA show there is a lack of capacity in some areas of the system, notably community-based services. Studies which take an epidemiological approach7–10 suggest that on average approximately 75% of deaths will require some form of EoLC. More work needs to happen to ensure the numbers on a PCR are increased from the current 0.14%.
Palliative care delivers higher quality clinical care and costs less than other forms of care.11 The move of care from hospital to community appears efficient, but the estimated costs used to make this conclusion are not robust and money saved in the acute sector is rarely released and reinvested in community care. Georghiou et al10 examined patterns of use of services by people nearing the end of their life and found that when money is saved in the NHS, the costs are pushed to social care. The Palliative Care Funding Review13 recommends that the social care of all patients on a PCR is funded by the NHS. This will be more expensive than services currently commissioned. However, it is logical to pool health and social care budgets; this would make tailored EoLC easier to plan and manage.
Public health has been previously linked to the EoLC agenda in terms of shifting care ‘downstream’, away from reliance on specialist input towards developing community confidence to care for dying friends and family.14
This paper aimed to illustrate how public health can support the improvement of EoLC services. Public health is focused on improving services in terms of increasing clinical effectiveness, efficiency, service planning, audit and evaluation, clinical governance and equity. All public health consultants are trained in nine key areas; the following four were used to deliver the HNA: strategic leadership and collaborative working for health, health and social service quality, public health intelligence and academic public health.
The HNA identified a number of recommendations. From these, 10 high-impact actions were identified. The Transformation Board, which is made up of the most senior health and social care staff in the city, has given the mandate for the evidence presented in the HNA to be used to develop a commissioning strategy. Accordingly work is in progress to respond to the high-impact recommendations, including:
Developing a robust performance management system which will give commissioners accurate data in real time to inform future service decisions.
Negotiating plans for a managed clinical network or alternative framework for delivery of the new service model.
Commissioning nurse-led hospice beds.
Commissioning some services to work over 7 days.
Increasing district nursing capacity.
Developing a single point of access to care.
Improving access to medicines.
Improving EoLC discharges from hospital and hospice.
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.
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