Better Endings - right care, right place, right time
Helping people to die with dignity, compassion and comfort is an important goal of any health service. Recent accounts have provided rich insights into some of the challenges for healthcare professionals trying to meet the needs of people at the end of life, ranging from reports of inequalities in access to specialist palliative care to skills and training gaps for general staff caring for the dying.
Better Endings is the NIHR Dissemination Centre’s first Themed Review. It brings together evidence from the NIHR, focusing largely on the quality and organisation of care. The review aims to help those delivering, planning or using end of life services to ensure that the right care is delivered in the right place at the right time.
The review also highlights examples of service innovations around end of life care in different parts of the country, which are being evaluated through NIHR projects. You can download a PDF version of Better Endings here.
Professor Bee Wee, National Clinical Director for End of Life Care
Watch the extended interview
Evidence at glance
More people are dying, at older ages and with complex longterm conditions. General staff in the community and in hospital provide most of the everyday care for people in the last years, months and weeks of life. They need time, training and support to do this well. Much care is provided by general practitioners and community nurses, but most people also have two or more unplanned hospital admissions in their last twelve months. Research shows that as many as one third of inpatients may have palliative care needs, but hospitals do not always provide managed end of life care.
Patients receiving care from specialist palliative care teams tend to do better than those without. However, not everyone has the same chance of accessing these services and spend varies greatly across the country. Services are not always matched to need and integration between general and specialist services varies greatly. Evidence is not very clear on the most cost-effective models of specialist palliative care. Ongoing NIHR research will address the important question of which patients are likely to benefit most to help make fairer decisions about allocating resources.
More support and tailored services are needed to support those with dementia and the very old at the end of life. Most people with dementia now die in care homes. Research highlights the uncertain trajectories at end of life and the need for close working over time between care home staff and those in primary care and specialist palliative services.
Research on large numbers of recorded deaths over time show that more people with cancer are now able to die in their place of choice. However, this is not true for people with conditions other than cancer. There are persistent inequalities in who is likely to die where. Hospital deaths are more likely for the very old or deprived and hospice deaths more likely for those with cancer.
Current end of life care services are not always able to support people dying where they want, usually home, hospice or palliative care unit. Research shows that patient preferences do change though and place of death may not be the most important aspect of care for many. Issues such as managing pain and other symptoms and the quality of care are key for patients and their family, whatever the setting.
Better coordination of services is needed, as research indicates variation in out of hours cover (such as 24/7 district nursing services) which can lead to unwanted hospital admissions. Research shows that coordination of care is better for those with cancer than those without. Less than one in five primary care organisations had systems between providers to share information about those approaching the end of life. Evaluations of new developments, from hospice at home services to rapid response teams to joined-up information systems, should provide useful learning for the service.
Uncertainties remain about when best to refer people for specialist palliative care and the cost-benefits of early referral. This is the subject of current research, as well as evaluation of brief palliative care interventions.
Research suggests that staff and patients find it difficult to discuss arrangements and plan ahead for end of life, particularly for long-term life-limiting conditions where it is hard to predict when people will die or the progress of disease. There is also variation in how hospitals manage decisions about invasive care and when to stop treatments. New research should help to identify good practice in implementing these complex policies.
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