The primary aim of this study, which was to explore the extent and nature of transitions to a palliative approach to care within the acute hospital setting, identified a significant gap between policy
recommendations and current practice.
Crucially, we have identified that ensuring patient involvement in decision-making during the last 12 months of life, a central tenet of theEnd of Life Care Strategy for England,5is not currently being
achieved. Patients are not routinely offered the opportunity to make decisions about the care and treatment that they receive at the end of life. If transitions to a palliative approach to care are initiated within the acute hospital setting, it is too late for meaningful involvement to be achieved. With this in mind, we suggest that a significant body of research is urgently needed to inform initiatives that can close the gap between policy and practice. Ourfindings confirm that focusing efforts on improving transition management within the acute hospital setting is fruitful because of the high proportion of inpatients meeting criteria for palliative care need. Specific steps required to ensure that this is achieved have been identified, including (1) clarification of definitions and terms, (2) education of the hospital-based generalist palliative care workforce, (3) initiatives to support team decision-making in collaboration with the patient and his or her family and (4) further understanding of patient and family preferences for involvement in end-of-life decision-making. Further research is required in all of these areas, as described in more detail below.
In relation to our secondary aim, we have concluded that the extent of potentially avoidable admissions amongst hospital inpatients with palliative care needs is not as high as previous estimates suggest.
Crucially, we defined these within the context of current service provision; previous studies have adopted a
‘blue sky’approach, assuming that a full range of community services is available and accessible to support patients with palliative care needs outside of the inpatient setting. Future initiatives to prevent admissions would be most fruitfully targeted to the nursing and residential care sector. Of more economic
consequence may be reducing the length of time that patients with palliative care needs spend in hospital; this requires further evidence of optimum discharge planning amongst patients with palliative care needs, as well as an understanding of how increased community support can be provided. The need to grow the evidence base regarding the health economics of palliative care provision is well established;179our study
points to a need to develop improved means of costing community service provision as well as, crucially, costs incurred by family carers.
Preventing hospitalisations, or reducing their duration, only minimises costs placed on statutory services. Further research is urgently needed to fully understand the economic implications of life-limiting illnesses for patients and their families; this will require the development of rigorous and acceptable tools to capture this information. Specific recommendations in relation to this aim are presented below.
To implement the DoH guidance29on initiating palliative care transitions within the acute hospital setting,
high-quality evidence is required in the following areas:
1. Initiatives to educate hospital-based clinicians about palliative care management.Robust interventions are required to educate hospital-based clinicians regarding the meaning and remit of palliative care. There is a particular need to clarify definitions of‘palliative care’and‘end-of-life care’and raise awareness of the range of initiatives promoted by the End of Life Care Programme.29Furthering
understanding of palliative care beyond cancer and, in particular, in relation to frail older people with multiple comorbidities, potentially including dementia, is required. Research is needed to identify the optimum means of delivering palliative care education in this setting. Ourfindings indicate that team- based initiatives are needed to promote team approaches to palliative care management; however, the practicalities of achieving this are obviously complex. There is also a need for more applied research on methods of implementing and sustaining culture change. Such research should build in a systematic way on the insights provided by this study and actively involve staff, patients and family carers in any further work aimed at further developing and testing educational interventions and associated change methodologies. This would lend itself to a programme of research culminating in a large-scale trial of an intervention based on the principles identified in this study.
2. Interventions to support the identification of patients with palliative care needs.Our participants identified significant challenges in identifying patients likely to be in the last 12 months of life. The GSF is being implemented within acute hospital settings. Research is needed to validate the GSF as an instrument for identifying palliative care need.
3. Interventions to promote palliative care transitions tailored to the acute hospital setting.A robust intervention is required to support clinicians in initiating palliative care transitions within the acute hospital setting and ensuring that patients and families are involved in discussions about goals of care. A complex intervention of this nature would likely involve multiple components and would require rigorous development and testing within the Medical Research Council framework for the development and testing of complex interventions.179Crucially, our data indicate that it would have to target the
whole clinical team and have built-in mechanisms to ensure that discussions are recorded and conveyed to patients’GPs. Means of ensuring appropriate support for patients and families following discussions about goals of care would also need to be developed. Links to further policy initiatives would also need to be ensured. Such discussions could provide a good lead into advance care planning, of which there was no evidence in our study.
4. Patient and family preferences and experiences. The extent of palliative care transitions within our study was so limited that little information could be gathered regarding patient and family experiences at this time. However, ourfindings did confirm that patients do not always want detailed information about,
or to be made aware of, the life-limiting nature of their condition. Further research exploring patient information needs is urgently required. The evidence base for prognostic discussions for people with conditions other than cancer is particularly limited.
The following are specific recommendations for further research in the area of potentially avoidable hospitalisations:
1. Evidence-based initiatives targeted at the nursing and residential care sectors.Ourfindings indicate a need for further research to identify which community supports targeted to nursing and residential care settings could prevent the small proportion of potentially avoidable hospitalisations currently evident amongst patients with palliative care needs. Previous research79,83has found that many more
admissions could be prevented by the full implementation of theEnd of Life Care Strategy,5which will
require not only additional research evidence but also significant investment in community services. We have also identified that current admission lengths amongst patients with palliative care needs are relatively high and that significant cost savings could be achieved by earlier supported discharge. 2. Earlier supported discharge from hospital.Further research to identify optimum discharge planning for
patients with palliative care needs, in addition to identifying the community supports required to prevent readmission, is needed.
3. Family costs of caring.Preventing hospitalisations, or reducing their duration, only minimises costs placed on statutory services. Further research is urgently needed to fully understand the economic implications of life-limiting illnesses for patients and their families; this will require the development of rigorous and acceptable tools to capture this information.