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Guidance needs to be applied in a careful, caring and person-centred way to ensure that patients benefit from, and are not harmed by, healthcare. In this blog, Dr Sam Finnikin, an academic GP in Sutton Coldfield, uses the story of 86 year-old Joan to illustrate the importance of shared decision-making in ensuring patients receive the most appropriate care. Joan was prescribed multiple medications by the hospital cardiology team after being diagnosed with acute coronary syndrome and a severely impaired left ventricle, but the medications made her feel very unwell and inhibited her quality of life. Joan then reached out to her GP surgery as she wanted to stop taking them, and Dr Finnikin realised that she and her family were unaware of the the reason each medication had been prescribed and the potential benefits and side effects of each one. After a long conversation about her priorities, Joan stopped the medications that were not benefitting her symptoms and died in peace and comfort at home a few weeks later. Dr Finnikin argues that shared decision-making is not an optional extra, but must be considered a vital part of healthcare, stating that "omitting shared decision making can be just as harmful to patients as being ignorant of clinical recommendations."

A group of patients and families with experience of end-of-life care worked with researchers from the Nuffield Trust to review findings from its research investigating the effect of the pandemic on people who were receiving end-of-life care at home. This web page summarises the research findings from the perspective of patients and family.

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.

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 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.

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.

The Patient Safety Authority has put together information and tips for patients on a range of topics.

On the 12 October 2020, the Care Quality Commission (CQC) announced the launch of a review into the imposition of blanket ‘do not attempt cardiopulmonary resuscitation’ (DNACPR) notices for patients in care homes, primary care and hospitals. This follows revelations earlier in the year that potentially thousands of patients were being placed in care homes with blanket ‘do not attempt resuscitation’ (DNAR) notices in place. This has led to widespread public criticism. This article explores whether a DNACPR notice is valid without the consultation of family members or other representatives of a patient receiving care and, if not, what should be done?

This report, written in collaboration with the Royal College of Nursing (RCN), sets out proposals to reduce the number of preventable natural deaths in prisons. It identifies how natural deaths occurring in prison might be prevented, where possible, and end-of-life care managed with dignity and compassion.

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. 

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 in 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.