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A change in how British people and health professionals talk about death is needed to avoid delays in crucial conversations about end-of-life care, resulting in traumatic consequences for patients and their families, the Parliamentary and Health Service Ombudsman (PHSO) has warned. In a new report, End of life care: improving ‘do not attempt CPR’ conversations for everyone, PHSO has called for urgent improvements to the process and communication surrounding do not attempt cardiopulmonary resuscitation (DNACPR), so doctors, patients, and their loved ones can make informed choices about their care.

This article in The Lancet looks at the need to prioritise palliative care and medications during armed conflict. The authors argue that the Israel–Hamas conflict amplifies the dire need for access to morphine and other essential palliative care medicines included on WHO's Model Lists of Essential Medicines in order to alleviate serious health-related suffering during humanitarian crises. They outline calls that the global palliative care community has made to the World Health Organization (WHO) and other aid organisations to: add adequate oral and injectable morphine and other pain-relieving medicines in humanitarian aid response packages ensure adequate essential medicine supplies for surgery and anaesthesia provide guidelines on the safe use of essential medicines and their distribution to all aid and health workers collaborate with receiving authorities to prevent removal of controlled medicines from emergency kits include paediatric essential medicine formulations for children. They argue that opioids and other essential palliative care medicines equip health workers with the means to relieve serious health-related suffering across clinical scenarios when curative or life-saving interventions are unavailable.

Ambulatory infusion pumps are small, battery powered devices that allow patients to carry out day-to-day activities while receiving medication. They are used for many healthcare needs, including symptom relief during palliative care, and in different settings including hospitals, hospices and patients’ homes. Despite having audio and visual warning alarms to notify when medication is not being delivered as it should be, there is a risk that alarms can go unnoticed, particularly by healthcare staff in inpatient settings. The patient case in the Health Services Safety Investigations Body (HSSIB) investigation report is Stephen, a 45-year-old cancer patient on palliative care in hospital, who did not receive his pain relief medication for six hours. Over the course of six hours, there were eight warnings.

The Worldwide Hospice and Palliative Care Alliance (WHPCA) is an international non-governmental organisation focusing exclusively on hospice and palliative care development worldwide. With over 100 members worldwide, it's mission is to bring together the global palliative care community to improve well-being and reduce unnecessary suffering for those in need of palliative care in collaboration with the regional and national hospice and palliative care organisations and other partners. The WHPCA website hosts a wide variety of resources relating to hospice and palliative care including: Advocacy resources Building Integrated Palliative Care Programs and Services Country reports and needs assessments Covid-19 Resources Disease specific plans and guidance Fundraising resources Global Atlas of Palliative Care at the End of Life Laws, regulations and national strategies Media resources National association strategic plans Palliative Care Toolkits and Training Manual Standards, clinical guidelines and protocols UN guidelines, documents and strategies on palliative care Universal Health Coverage Resources WHPCA position statements WHPCA publications and reports

This joint manifesto has been produced by the charities Sue Ryder, Marie Curie, Together for Short Lives, National Bereavement Alliance and Hospice UK. Ahead of the next General Election, they are calling upon all political parties and candidates to commit to policies that ensure everyone affected by dying, death and bereavement receives the best possible care and support, both now and in the future. The manifesto calls for the new Government to: Deliver a new funding solution for hospices and palliative and end of life care to end the postcode lottery in access Introduce a national delivery plan for palliative and end of life are in every nation to support delivery of local services Guarantee that palliative and end of life care services meet each individual’s needs, including those of people dying at home Act to ensure that nobody dies in poverty and tackle inequalities in palliative and end of life care Improve support for families and carers of people with a terminal illness

This article from Sarcoma UK was written by Dermot’s family to develop their reflections and recommendations on the recent publication of the Healthcare Safety Investigation (HSIB) report, Variations in the delivery of palliative care services to adults.

Health and care services in England are not always able to provide individualised, equitable and coordinated palliative and end of life care (PEoLC) to meet the holistic needs of people and their families. To understand the impact of inconsistent palliative care, the Healthcare Safety Investigation Branch (HSIB) looked at the case of Dermot, a 77-year-old cancer patient. Dermot's case shows the gap between what is needed and what is available. HSIB make three safety recommendations to NHS England aimed at improving the delivery of palliative and end of life care.

People dying in UK hospitals without specialist palliative care input frequently have “significant and poorly identified unmet needs,” finds a UK-wide evaluation—the first of its kind—published online in the journal BMJ Supportive & Palliative Care. In response to the perceived unmet needs of people dying in hospitals, the Association of Palliative Medicine coordinated the first ever prospective evaluation of end of life care against set standards in 88 hospitals across the UK: Seeking Excellence in End-of-life Care UK or SEECareUK.  Palliative care specialists assessed how well the holistic needs of 284 adult patients nearing death, but not referred to palliative care services, were being met on one single day between 25 April and 01 May 2022. Patients in emergency care departments or intensive care units weren’t included.  Nearly all (93%) of those assessed had demonstrable unmet need, with this deficit more apparent in district general hospitals than it was in teaching hospitals or cancer centres. It is estimated that 1 in 10 patients admitted to UK hospitals will die during their inpatient stay. As specialist palliative care teams often function as a consult service, referral from the managing team is required.  But complexities around recognising that a patient is dying and the stigma associated with palliative care mean these referrals are frequently not made, say the researchers of this study.

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.

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.

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.

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.

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.