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This infographic explains the role community health services play in the NHS healthcare system.

More and more people are dying at home, rather than in a hospital or hospice. With this trend set to continue, how can commissioners ensure that end-of-life care reflects this and meets the needs of people approaching the end of their lives and their loved ones?   This new report from the King's Fund explores what we know about commissioning end-of-life care, the inequalities experienced by particular groups, and how NHS and social care commissioners in England are measuring and assuring the quality of care people receive.   Drawing on interviews with commissioners, stakeholders and experts in end-of-life care, as well as recently bereaved carers and family members, this report offers reflections and recommendations for those wanting to improve end-of-life care for those dying at home.

For patients living at home with advanced illness, deterioration in health can happen at any time of the day or night. This research report funded by the charity Marie Curie looks at issues faced by people with advanced illness and their informal carers in accessing out-of-hours care. The report highlights new evidence on out-of-hours care, based on: UK data on out-of-hours emergency department attendance among people who are in the last year of life. interviews with health professionals about out-of-hours services across the UK. a patient and public involvement (PPI) workshop.

What needs to happen to make sure everyone gets the care and support they need as they approach the end of their lives? Ruth Robertson speaks to Lesley Goodburn, Professor Bee Wee , John Powell and Angie Arnold to find out more.

Richard von Abendorff's elderly mother died an avoidable, painful death in hospital due to being inappropriately prescribed Nalaxone. In this article, Richard outlines the steps he has taken to try and ensure lessons are learned from his mother's experience. Eventually, in 2014 NHS England published a patient safety alert relating to inappropriate doses of naloxone in patients on long-term opioid treatment. A coroner’s palliative expert report identified issues contributing to Richard's mother's poor end of life care, noting that purely advisory palliative services in an acute hospital setting are ‘not fit for purpose’ to meet the needs of more complex dying patients. Richard expresses his frustration at an ongoing lack of interest and action related to substandard end of life care.

This research explores how the COVID-19 pandemic has changed the ways doctors make end-of-life decisions, particularly around Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR), treatment escalation and doctors’ views on the legalisation of euthanasia and physician-assisted suicide.

The National Audit of Care at the End of Life (NACEL) is commissioned by the Healthcare Quality Improvement Partnership (HQIP) as part of the National Clinical Audit and Patient Outcomes Programme (NCAPOP). It was carried out by the NHS Benchmarking Network in collaboration with The Patients Association and aims to assess the quality of care that patients receiving end of life care and their families experience, as well as staff perceptions of their confidence and ability to deliver end of life care. The audit included: an Organisational Level Audit covering Trust/Health Board and hospital/submission level questions for 2020/21. a Case Note Review which reviewed 20 consecutive deaths between 12th April 2021 and 25th April 2021 and 20 consecutive deaths between 1st May 2021 and 14th May 2021 for acute providers and up to 40 consecutive deaths in April and May 2021 for community providers. a Quality Survey completed online, or by telephone, by the bereaved person. a Staff Reported Measure, completed online. Key findings Recognising the possibility of imminent death The possibility that the patient may die within the next few hours/days was recognised in 87% of cases audited, compared to 88% in 2019. The median time from recognition of dying to death was recorded as 44 hours (41 hours in 2019). Communication with the dying person Results on all key metrics regarding the recording of conversations with the dying person remain similar to 2019, pre-pandemic levels However, from the Quality Survey, the proportion strongly disagreeing or disagreeing with the statement ‘staff communicated sensitively with the dying person’ increased from 7% (2019) to 11% (2021). Communication with families and others There was little change in 2021 when compared to 2019, with continued high compliance on recording of conversations about the possibility that the person might die and on the individualised plan of care. As in 2019, discussions on hydration and nutrition with families and others were documented, or a reason why not recorded, in only around half of cases. Involvement in decision making Findings from the Case Note Review in 2021 suggest continued strong compliance on involvement in decision making, with similar results to those reported when this theme was last tested in 2018. However, from the Quality Survey, in 2021, 23% of people felt they would like to be more involved in the person’s care compared to 19% in 2019. Individualised plan of care Third round findings from the Case Note Review showed similar results for the existence of an individualised plan of care, 73% of cases compared to 71% in 2019, suggesting this is an ongoing area for improvement. Documented evidence of an assessment of wider needs such as emotional/psychological, spiritual/religious/cultural and social/practical shows a reduction since 2019, which may be a result of continuing pressures of the Covid-19 pandemic on services during 2021. Needs of families and others The needs of the family were identified as an improvement area in both round one and round two of the audit. Comparison with 2019 findings suggests performance has deteriorated, which may reflect the impact of the pandemic on the ability of visitors to access wards and the capacity of staff to assess and address the needs of families and others. Families’ and others’ experience of care The overall rating of care and support to the person who died, and the overall rating of care and support provided to families and others, are lower than in 2019. Governance Governance was last measured in 2018 and Trusts/Health Boards (HB) continue to show high compliance with the existence of key policies related to care at the end of life in 2021. Workforce/specialist palliative care The results show an improvement in access to specialist palliative care, in particular, face-to-face access 8 hours a day, 7 days a week was available in 60% of hospitals/sites compared to 36% in 2019. The increased provision may reflect a response to the pandemic and it is not yet clear whether the change will be permanent. Staff confidence Staff completing the survey expressed confidence in recognition of dying, communication, responding to the needs of the dying person and those important to them, involving people in decision making, accessing specialist palliative care and managing pain and physical symptoms, with less than 6% stating they strongly disagreed or disagreed with positive statements of confidence in these areas. Staff support Training was identified as a potential area for improvement with only 49% of respondents stating they had completed training specific to end of life care within the last three years. Although staff felt support was available from the specialist palliative care team, only 66% felt managerial support was available to help provide care at the end of life. Care and culture Although 83% felt able to raise a concern about end of life care, this should be closer to 100%. Only 80% answered positively that they felt they work in a culture the prioritises care, compassion, respect and dignity, which is also a concern.

The Better End of Life programme is a collaboration between Marie Curie, King's College London Cicely Saunders Institute, Hull York Medical School, the University of Hull and the University of Cambridge. It's first research report outlines key findings of the programme relating to the experience of death and dying during 2020, at the height of the Covid-19 pandemic. This interactive webpage presents graphics which highlight the key findings of the research.

The pandemic led to major disruption to services right across health and social care, as well as a huge shift in where patients are dying, with more than 105,000 extra deaths at home in the UK over the first two years of the pandemic. The reasons for this are not fully understood, but have profound implications for the experience of people dying and their families and carers, and for the type and quality of care they receive.  There is currently a large gap in our understanding of the services that the hospice sector provides across the UK. This report by the Nuffield Trust seeks to begin to close that gap by analysing the important role of hospices in supporting people at the end of life and their families, both in hospice settings and at home.

More than 100,000 additional people have died across the UK since the start of the pandemic, compared to long term rates. Many of these people have died at home, and we know little about their experience, or the level of care and support they and their relatives received from the healthcare system. In this blog for the charity Hospice UK, Maureen describes her experience of caring for her parents after they were discharged from hospital to die at home during the first wave of the Covid-19 pandemic. Maureen describes how she and her siblings were left to care for their parents with very little practical, clinical or emotional support. Hospice UK have also shared a video of Maureen telling her story as part of their Dying Matters campaign.

Providing high quality care and treatment for patients coming to the end of their lives is likely to involve making difficult and emotionally challenging decisions. This guidance from the General Medical Council provides a framework to support doctors in meeting the needs of each patient as they come towards the end of their life.

This short animated video looks at the importance of clear, compassionate communication in healthcare, particularly when discussing end-of-life care and death with patients.

This short animated video explores the issue of prioritising equality in shared decision making, to ensure that all patients' and family members' values are sought and incorporated in treatment decisions.