Search the hub

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 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.

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.

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.

Early palliative care intervention reduces hospitalisations and ensures optimization of patient comfort and trajectory of treatment. However, patient safety and palliative care initiatives are not as integrated as they should be, considering many palliative care patients have a limited prognosis, have complex, multifaceted conditions, and are, therefore, more susceptible to detriment due to error. Furthermore, there is a lack of a clear distinction between end of life care, palliative care, and hospice care, which confounds the subsequent processes. Because these issues overlap significantly, interventions can be optimised for efficiency.  This document provides a blueprint that outlines the actionable steps organisations should take to successfully improve palliative care access and coordination and summarises the available evidence-based practice protocols. 

This article from Petriceks and Schwartz, published in Palliative & Supportive Care, describes a four-element approach centered on Goals, Options, Opinions and Documentation that serves as an effective structure for clinicians to have conversations with patients and families to address care management when the path forward is unclear.

The Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) is a process supported by the Resuscitation Council (UK) and UK Royal Colleges to create personalised anticipatory care plans for patients. Hampshire Hospitals NHS Foundation Trust has been an early adopter of this process with variability in engagement with this process across our trust. Published in Progress in Palliative Care, this paper describes a quality improvement project was performed to improvement engagement with ReSPECT as well as consistency and quality of documentation.

In a new series for the hub, Martin will be interviewing healthcare professionals from various specialties to capture their experience and insight during the coronavirus pandemic. Learning from frontline staff is crucial, now more than ever. Prior to a predicted second wave hitting us, the government and leaders must listen to what has gone well but, most importantly, not so well for both staff and patients. Martin is a passionate nurse working on a covid unit and wants to promote learning to ensure patient and staff safety. This initially started as a way of connecting and not feeling alone but what Martin has found is that there are many voices that need and want to be heard but just don’t know how to speak up and out. In all of the interviews the healthcare professionals wanted to remain anonymous which is indicative of their fear of reprisals from their organisation. In this first interview, Martin interviews a new student district nurse who has been working within the community in the South West. Their role involves supporting care homes with end of life care and assisting in keeping people with long term conditions at home. 

The current COVID-19 pandemic has necessitated the redeployment of NHS staff to acute-facing specialties, meaning that care of dying people is being provided by those who may not have much experience in this area. This report published by Future Healthcare Journal, details how a plan, do, study, act (PDSA) approach was taken to implementing improved, standardised multidisciplinary documentation of individualised care and review for people who are in the last hours or days of life, both before and during the COVID-19 pandemic. The documentation and training produced is subject to ongoing review via the specialist palliative care team's continuously updated hospital deaths dashboard, which evaluates the care of patients who have died in the trust. It is hoped that sharing the experiences and outcomes of this process will help other trusts to develop their own pathways and improve the care of dying people through this difficult time and beyond.

This link provides a framework for end of life care and breaking bad news during the Covid-19 pandemic. It has been created by e-LfH, a Health Education England Programme in partnership with the NHS and Professional Bodies. Resources include: Discussion of Unwelcome News during Covid-19 Pandemic: a framework for health and social care professionals  Covid-19: Evidence-based advice for difficult conversations Scottish Quality and Safety Partnership Poster - unwelcome news Real Talk Framework Telephone Prompt List Real Talk Framework Sketch Note Video 1 - The framework Video 2 - Community (Advance Care Planning: how I have the conversation) Video 3 - Breaking bad news Video 4 - Ceilings of Treatment. Nb: The below link will take you to a landing page. To access the end of life resources listed above, you will need to go to the 'End of Life Care' folder and then to 'Documents and Videos'. 

This guidance is aimed at all professionals carers supporting patients with COVID-19, and their families, in the hospital setting – whether this is in critical care or elsewhere in the hospital. All hospitals have access to specialist palliative care teams, whether as in-house hospital palliative care teams or as in-reach teams from the local palliative care services. These teams will be able to provide additional advice and guidance but it will not be possible for them to provide direct care to everybody who needs it, especially as the pandemic progresses.  This guidance includes flow charts to help aid treatment and symptom control. Nb: The most current version of the guidance document will be available on the public-facing pages of the Association for Palliative Medicine website (https://apmonline.org/). It is advised that you always check that you are referring to the most current version.

Health Education England has published a set of materials and films which aim to support staff through difficult conversations arising from the COVID-19 outbreak.

All hospitals have access to specialist palliative care teams, whether as in-house hospital palliative care teams or in-reach teams from local palliative care services. These teams will be able to provide advice and support, but it will not be possible for them to provide direct care to everybody who needs it, especially as the pandemic progresses. This NHS guidance is aimed at all professionals looking after patients with coronavirus, and their families, in the hospital setting.

Today we find ourselves in the middle of a pandemic. COVID-19 has swept across the globe with thousands dead, more seriously unwell, and a sense of anxiety and uncertainty within healthcare professions that is unlike anything we have seen. As the course of the viral illness becomes clearer, management guidelines are being produced, including around the topics of supportive and palliative care. To understand the real life implications of working on the front line, Dr Tavabie and Dr Ball, in this BMJ Supportive and Palliative Care article, conducted a series of short structured interviews with clinicians across the UK in a variety of healthcare settings, discussing their experiences and looking for themes arising from the current COVID-19 outbreak. They hope that quotes from these conversations make for an accurate description of our current time, and may be of interest now and in future. Read part two of the article

Palliative care services are under-resourced at the best of times. The 2017 Lancet Commission on Palliative Care and Pain Relief described the widespread lack of access to inexpensive and effective interventions as a travesty of justice. As health systems become strained under COVID-19, providing safe and effective palliative care, including end-of-life care, becomes especially vital and especially difficult, as discussed in this Lancet editorial.

This is a guide to end of life care symptom control when a person is dying from COVID19 for General Practice Teams, prepared by the Royal College of General Practitioners (RCGP) and the Association for Palliative Medicine.

The Palliative Care for People with Learning Disabilities (PCPLD) is a charity created to ensure that patients with learning disabilities receive the coordinated support they need throughout their life. The PCPLD Network brings together service providers, people with a learning disability and carers working for the benefit of individuals with learning disabilities who have palliative care needs. There are some interesting webinars on a range of different topics which have already taken place for you to watch as well as useful resources.

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.