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Managing transitions to palliative care for older people in acute hospitals

This is the fourth in a series of six articles that aim to encourage nurse leaders to explore how to use research findings to improve practice and services where they work. The series focuses on research that has been funded by the National Institute for Health Research (NIHR) and included in NIHR Dissemination Centre publications. The authors seek to relate the content directly to the Nursing and Midwifery Council’s code of professional standards of practice and behaviour, specifically the themes of practising safely and promoting professionalism and trust.

Introduction by Elaine Maxwell, clinical adviser at the National Institute for Health Research Dissemination Centre

The NIHR Dissemination Centre helps clinical staff, commissioners and patients to make informed decisions about best practice and treatment in health and social care. In 2015, we looked at the evidence on best practice in caring for people who are dying in our themed review Better Endings.

Every year in England and Wales over 500,000 people die (Office for National Statistics (ONS) 2017). For many of it is a process that may take days, weeks or even years, involving a progressive decline in functioning and frequent interactions with health professionals (Hughes-Hallett et al 2011).

Improvements in health care have contributed to increased life expectancy and a shift in the age at which most people die. However, as the number of older people in the population is increasing the number of annual deaths is expected to rise by almost 10% by 2030 to 574,000 (ONS 2016).

While much work has been done on end of life care for people with premature deaths, such as from cancer, we still have much to do in ensuring good deaths for older people. Most still die in hospital and the National Survey of Bereaved People in England (ONS 2015) found family members of people cared for in hospitals are consistently less likely to express satisfaction with the quality of end of life care their loved one received.

Our review included the findings of one study, Transitions to palliative care for older people in acute hospitals: a mixed-methods study (Gott et al 2013), that concentrated on older people approaching the end of their lives and the attitudes and actions of staff in acute hospitals. This article looks at how the research was conducted and how healthcare providers might respond.

This is the fourth in a series of six articles that aim to encourage nurse leaders to explore how to use research findings to improve practice and services where they work. The series focuses on research that has been funded by the National Institute for Health Research (NIHR) and included in NIHR Dissemination Centre publications. The authors seek to relate the content directly to the Nursing and Midwifery Council’s code of professional standards of practice and behaviour, specifically the themes of practising safely and promoting professionalism and trust

Palliative_Care_Older_People
Picture: Getty Images

Introduction by Elaine Maxwell, clinical adviser at the National Institute for Health Research Dissemination Centre:

The NIHR Dissemination Centre helps clinical staff, commissioners and patients to make informed decisions about best practice and treatment in health and social care. In 2015, in our themed review, Better Endings, we looked at the evidence on best practice in caring for people who are dying.

Elaine_Maxwell
Elaine Maxwell

Every year in England and Wales more than 500,000 people die (Office for National Statistics (ONS) 2017). For many, it is a process that may take days, weeks or even years and involve a progressive decline in functioning and frequent interactions with healthcare professionals (Hughes-Hallett et al 2011).

Improvements in healthcare have contributed to increased life expectancy and a shift in the age at which most people die. However, as the number of older people in the population is increasing, the number of annual deaths is also expected to rise, by almost 10% by 2030 to 574,000 (ONS 2016).

While much work has been done on end of life care for people with premature deaths, such as those from cancer, we still have much to do in ensuring good deaths for older people. Most still die in hospital, and the National Survey of Bereaved People in England (ONS 2015) found family members of people cared for in hospitals are consistently less likely to express satisfaction with the quality of end of life care their loved one received.

Our review included the findings of one study, Transitions to palliative care for older people in acute hospitals: a mixed-methods study (Gott et al 2013), that concentrated on older people approaching the end of their lives and the attitudes and actions of staff in acute hospitals. This article looks at how the research was conducted and how healthcare providers might respond.


Clare Gardiner, vice-chancellor's fellow at the school of nursing and midwifery, University of Sheffield, and Merryn Gott, professor of health sciences, University of Auckland, New Zealand:

Clare_Gardiner
Clare Gardiner

This study sought to understand how transitions to a palliative care approach are managed for older people in acute hospitals, and to identify best practice from the perspective of clinicians and service users.

The notion of an appropriately managed ‘transition’ to a palliative care approach for patients likely to be entering the last year of life is central to the recommendations in the End of Life Care Strategy for England (Department of Health 2008). However, little was known about how this transition is initiated or managed, and to what extent patients and their families are involved in decision making.

Our study focused on the important, but overlooked, role of the acute hospital in end of life care (Robinson et al 2015). To date, palliative care research has focused on home as a preferred care setting despite the fact that most people in the UK die in hospital.

The study adopted a mixed-methods approach and was conducted in two hospitals serving diverse patient populations. We chose a mixed-methods design to ensure we could capture the experiences of patients and carers, and include robust quantitative outcomes. Our dedicated service user group, who were convened to support the study, were central to decisions regarding methodology.

Merryn Gott
Merryn Gott

The study began with an initial qualitative phase, in which healthcare professionals’ perceptions of barriers to, and facilitators of, palliative care transitions in hospital were explored. This was followed by a comprehensive survey of inpatients at the two participating hospitals.

Data on palliative care needs and important aspects of care management for 654 patients were obtained from hospital case notes, patient and carer questionnaires, and medical and nursing staff questionnaires.

A further qualitative phase involved interviews with inpatients who had palliative care needs to explore their perspectives of communication with healthcare professionals about their prognoses and care goals.

One year later, a retrospective case note review of all patients who had died in the 12 months following their hospital admission (n=483) was undertaken. This examined important aspects of patient management and identified whether hospital admission could have been avoided.

Key findings

Just over one third (n=185, 36.2%) of hospital inpatients met one or more prognostic indicator criteria for palliative care needs, yet only 33% of these patients showed evidence of a transition to a palliative care approach. Medical staff identified only 15.5% of inpatients with palliative care needs and nursing staff identified only 17.4%.

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

7.2% of admissions were identified as ‘potentially avoidable’. Taking into account the avoided hospital costs, and the cost of providing support in alternative locations, the estimated economic effect was a potential cost saving of £45,287 across the two hospitals. This translates to an annual cost saving of approximately £5.3 million across the two hospitals.

Discussion

This study confirmed that patients with palliative care needs represent a significant proportion of the hospital inpatient population. However, we identified a gap between practice and policy regarding palliative and end of life care management in acute hospitals (NHS England 2012).

In particular, we found limited evidence that managed transitions to a palliative care approach were being initiated in hospital settings.

A failure to discuss prognoses and goals of care with patients and their families severely limits their involvement in decisions about care and treatment.

We identified an urgent need to build capacity in palliative care management among non-specialist palliative care clinicians in acute hospital settings, particularly in relation to initiating and effectively communicating transitions to a palliative care approach among patients likely to be in the last 12 months of life.


Jane Greene, nurse consultant for older people, Southern Health and Social Care Trust, Portadown, Northern Ireland:

Jane_Greene
Jane Greene

This research highlights the complexity of the issues involved when determining which patients in hospital are classed as palliative.

The researchers identified that patients profiled as palliative were frail older people with multiple comorbidities who had previously been admitted to hospital.

This highly topical research indicates that, in spite of strategic frameworks and best practice guidance, hospital healthcare practitioners are struggling to identify palliative care needs.

If a patient is identified as requiring palliative care, there is rarely a consensus for whether he or she should be managed by specialists or generalists.

While the sample is small, it reflects what is reported anecdotally and is backed up by Dean (2018), who reported results of a nursing workforce survey in 2017 that shows frustration among nurses who hunger for knowledge of palliative and end of life care, but cannot access the appropriate training.

Assessment tools

There are a number of assessment tools available to healthcare practitioners to assist with clinical decision-making in people with palliative care needs but, unless there is training and clear pathways with adequate resources in the community, such people will continue to have variable access to appropriate care.

Hospital teams are often in a position to identify that a patient’s care needs are palliative. If these needs are not identified, there is potential for delayed discharge, repeated and potentially avoidable admissions, and reduced quality of life for patients.

Therefore, commissioners and hospital management should take note of this research because its findings may improve the flow of patients in the acute sector, lead to shorter hospital stays, help ensure repeated admissions are avoided and improve patients’ experiences.

Discussion

Identifying palliative care needs can be challenging. While many long-term conditions are managed by specialist staff, who may be more likely to recognise them, many people have two or more long-term conditions and do not fit neatly into these services.

Pressure on services means that people are not always admitted to the appropriate wards, with older people with comorbidities, for example, being nursed in a gynaecological ward, where staff have less understanding of their needs.

As people live longer with comorbidities, the need for person-centred palliative care will increase. Responsive palliative care will ensure older people can live well into later life and reduce the negative effects of prolonged hospital stays.

Funding

This article presents independent research commissioned by the National Institute for Health Research (NIHR) under Health Service (HS) and Delivery Research (DR) (Grant Reference Number 08/1809/233). The views expressed are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health and Social Care. The sponsor of the study had no role in study design, data analysis, data interpretation or writing of the report

To ensure palliative care is available to everybody, there needs to be a whole-systems approach with every patient identified and allocated to a key worker. This would allow for more effective management across organisational boundaries, with one lead professional who can liaise between departments on their behalf. For patients living at home in Northern Ireland, this role is carried out by a district nurse.

Further research on how, when, where and by whom palliative care needs are assessed and care is delivered is essential for hospitals and communities.

This research indicates there is a fundamental lack of knowledge and understanding of a patient’s journey to palliative care, but there is a wealth of knowledge and experience in the hospice sector, which is a resource that hospitals should access. The most pertinent resource will be families and patients, who can share the lived experience and should be key stakeholders in co-designing acute hospital responses to this research.

References

Further information

Using research findings to improve practice and services

Read the other articles in this series

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