End of life care in England: a briefing paper | IPPR
This paper provides a brief summary of issues around end of life care including the impact of location on the quality and cost of care; analyses data on the current location and cost of end of life care in England; and appraises the current policy agenda in this area, suggesting key areas where improvements should be made.
Study highlights the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population | BMC Paliiative Care
Symptom management is an essential aspect of palliative and end-of-life care, but evidence suggests that patients’ symptoms may not always be relieved, causing significant harm to patients and magnifying their relatives’ distress. A growing body of evidence focuses on symptom management at the end-of-life, but research funding for palliative care remains disproportionately low. It is therefore crucial that research funding is targeted at areas of importance to patients and relatives. The Palliative and end-of-life care Priority Setting Partnership (PeolcPSP) undertook a UK-wide free-text survey to establish research priorities within palliative and end-of-life care and disseminated its results in 2015. Much of the data were related more broadly to personal perceptions and experiences rather than specific research questions. The aim of this article is to report on a supplementary analysis exploring the experiences and questions of PeolcPSP survey respondents regarding symptoms, hydration and nutrition.
The PeolcPSP data (n = 1403) were coded by a team of qualitative researchers in a supplementary analysis. There were 190 responses that related to symptoms, nutrition and hydration. The data were analysed thematically using Braun and Clarke’s approach.
Five themes were identified: pain, breathlessness, agitation, nutrition and hydration. The majority of responses related to symptoms that were sub-optimally managed, in particular pain. Nutrition and hydration were of significant concern, particularly for carers. Overall, respondents consistently asked about the most effective, evidence-based methods for managing symptoms and suggested areas where further research is necessary.
This study highlights the perceptions and experiences of patients, families and professionals within palliative care, highlighting the need for improved care, communication and further research to establish which treatments are most effective within a palliative care population. This is essential to reduce harm and distress for patients and families.
A survey conducted by Marie Curie and the Nursing Standard demonstrates how pressures on the NHS are compromising care for terminally ill patients.
It found that 94% of nurses who participated in the survey (n over 600) have witnessed dying patients ‘stranded’ in hospital as delays in funding have meant they were unable to receive care in the community.
Among the survey’s key findings were:
Almost two-thirds (65%) of nurses say they do not have sufficient time to provide high quality care for patients who are dying, a similar proportion to those who answered the survey last year.
Staffing levels (38%) and time constraints (25%) were the main barriers identified to providing high quality care, followed by a lack of care provision in the community, including care homes, peoples’ homes and hospices.
The full press release is available on the Marie Curie website
The full results of the survey are published in latest issue of the Nursing Standard which is available to Rotherham NHS Staff here
New research published in the BMJ outlines the benefits of early access to palliative care for terminally ill patients. The cohort study which examined the experiences of cancer patients in Yorkshire found that patients who were able to access palliative care earlier, experienced improved quality of life.
The study led by Lucy Ziegler, University of Leeds and Yorkshire Cancer Research questioned if there is an optimal point when a patient should begin to receive palliative care, when the focus switches from trying to treat disease to managing symptoms.
While research in the US suggests that should happen about six months before death. But in the UK, most advanced cancer patients only start palliative care seven weeks before they die.
NHS Improvement have published information about the End of life care collaborative. They ran a 150-day programme, involving 16 volunteer trusts, to improve end of life care across a number of settings to improve the experience and quality of care received by patients at end of life. They have published the following case studies:
Winning the 2017 “Compassionate patient care” award, Warrington is one of five areas across the country now giving people more of a say in the care they receive in their last weeks and months of life. Personal health budgets are part of a range of work being led by NHS England to improve end of life care.
Hear patients, hospice staff and commissioners talk about the benefits of personal health budgets in Warrington in this short film:
Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study | BMC Geriatrics | published online 5th October 2017
A study from the University of Cambridge in the UK found that elderly people were four times more likely to die comfortably if their last days were spent at home or in a “care home”—defined to be either a residential care home or a nursing home—than if they were in a hospital.
Jane Fleming, a senior research associate at Cambridge, and colleagues, reported in BMC Geriatrics about their retrospective analysis of data from 180 deceased participants, ages 79-107 years. Relatives and caregivers were asked about the patients’ comfort level. The researchers learned only 10% of all participants died without pain or symptoms of distress.