̽��ֱ�� of Cambridge - Stephen Barclay

Study reveals ‘patchy and inconsistent’ end-of-life care

cjb250 — Tue, 03 Sep 2024 08:00:57 +0000

These are among the conclusions of Time to Care: findings from a nationally representative survey of experiences at the end of life in England and Wales, a new report funded by end-of-life charity Marie Curie and produced by King’s College London’s Cicely Saunders Institute, Hull York Medical School at ̽��ֱ�� of Hull, and the ̽��ֱ�� of Cambridge.

Time to Care aims to describe the outcomes, experiences, and use of care services by people affected by dying, death, and bereavement in England and Wales. It is the final report from the Marie Curie Better End of life programme.

̽��ֱ��report found one in five dying people had no contact with their GP in the last three months of life.

Half of people surveyed (49%) said their dying loved one visited A&E at least once in their final three months of life, and one in eight people who died in hospital had been there less than 24 hours.

Half of respondents (49%) in the study were also unhappy with at least one aspect of the care the person who died received and of those one in eight people made a formal complaint. Fewer than half of respondents said they had a key contact person to co-ordinate their care. This meant responsibility for care fell on informal carers (family and friends), who often felt unprepared and unsupported.

Professor Stephen Barclay, from the Department of Public Health & Primary Care at the ̽��ֱ�� of Cambridge, a researcher on the project and a practicing GP, said: “GPs, Community Nurses and the wider Primary Care Team have a central and often under-recognised role in the care of people approaching and at the end of their lives. But they are under enormous pressure with increasing workloads, diminishing workforces and inadequate investment over recent years.

“Increasing numbers of people have been dying in the community during and following the COVID-19 pandemic, at home or in care homes. This important survey, undertaken at a time when the NHS was beginning to recover from the worst of the pandemic, reveals how clinical teams in all settings are struggling to meet the needs of this vulnerable patient group.

“ ̽��ֱ��out-of-hours period, which comprises two-thirds of the week, is particularly difficult for patients and their families. Across the UK, GPs and Community Nurses want to provide excellent palliative and end of life care, but the necessary ‘time to care’ is currently often squeezed. ̽��ֱ��new UK Government’s focus on care close to home is welcome. This report highlights the need for a radical repurposing of NHS funding to resource primary care for that ambition to be achieved.”

̽��ֱ��research report is based on a survey sent by the Office for National Statistics in 2023 to a nationally representative sample of people who had registered the death of a family member in the prior six to 10 months. Only non-sudden causes of death were included. Responses were received from 1179 people, making this the largest nationally representative post-bereavement survey in England and Wales for a decade.

Professor Katherine Sleeman, from King’s College London and lead researcher on the project, said: “This study reveals patchy and inconsistent provision of care for people approaching the end of life. While there were examples of excellent care - including in the community, in care homes, and in hospitals - the overall picture is of services that are overstretched, and of health and care staff lacking the time they need to consistently provide high-quality care. This means that dying people miss out on treatment and care for their symptoms, and families are left feeling unprepared and unsupported which has lasting emotional repercussions into bereavement.

̽��ֱ��researchers say the findings are concerning, considering the ageing population and the expected increase in palliative care needs across the UK. By 2048, there will be an additional 147,000 people in the UK who need palliative care before they die, an increase of 25%.

“Without a corresponding increase in capacity of primary and community care teams to support these people as they approach the end of life, the quality of care is likely to further suffer,” said Professor Sleeman. “It has never been more important to ensure high-quality palliative care for all who need it.”

Annette Weatherley, Marie Curie Chief Nursing Officer, added: “ ̽��ֱ��findings are shocking. Too many people are dying in avoidable pain, struggling with breathlessness and other debilitating symptoms because of the difficulties they face accessing the end-of-life care they need from overstretched GPs and other health and care workers.

“Without urgent action, gaps in access to palliative and end of life care will only grow.

“It is a critical time to improve palliative and end of life care. People at the end of life should be able to have the very best possible care. There is only one chance to get it right at the end of life. Yet, as the evidence shows, too many people are being failed by a system faced with extreme financial and workforce pressures. It’s time for Governments to step up and fix care of the dying.”

Professor Stephen Barclay is a fellow at Emmmanuel College, Cambridge.

Adapted from a press release by Marie Curie

One in three dying people in England and Wales was severely or overwhelmingly affected by pain in the last week of life, with bereaved people reporting how difficult it was to get joined-up support from health and care professionals at home.

This report highlights the need for a radical repurposing of NHS funding to resource primary care for that ambition to be achieved

Stephen Barclay

Alexander Grey

Experimental coloured image of two hands touching

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A silent epidemic of grief

cjb250 — Mon, 01 Mar 2021 08:48:01 +0000

Major changes in bereavement care have occurred during the COVID-19 pandemic, amid a flood of demand for help from bereaved people, according to new research from the ̽��ֱ�� of Cambridge.

Public attitudes towards end-of-life care in progressive neurological illness are conflicted, study reveals

cjb250 — Wed, 05 Apr 2017 18:00:57 +0000

̽��ֱ��study found that one in six people believes that measures must be taken to sustain life at any cost even when a patient is in the final stages of an illness such as dementia. However, more than twice as many people would request measures to enable them to die peacefully at this stage. ̽��ֱ��researchers say this highlights the challenges faced by those providing care and by legislators.

Previous surveys have found strong public support for assisted dying, which includes providing life-ending drugs for the terminally ill to administer themselves, giving assistance to die to disabled people who are not dying, and voluntary euthanasia. In both the UK and the USA, public opinion surveys repeatedly find that around two-thirds of those surveyed are in favour.

However, these surveys often do not capture nuances, say the researchers. To provide more detail, working with polling company Ipsos MORI, the team developed a six-stage vignette featuring a fictitious person living in a care home whose abilities in both decision-making capacity and swallowing are declining. In the final stage, the person is bed bound, unable to swallow, spends most of their time asleep and has no capacity to make decisions about their care.

Around 2,000 people were surveyed – just over half in the USA, using an online survey, and the remainder in the UK via face-to-face interviews. They were asked to choose between four care preferences: sustain life by using any means necessary, including forced feeding and deprivation of liberty; encourage, but not impose, nutrition and hydration by tube or other means; no intervention for artificial nutrition and hydration, but continuation of oral nutrition and hydration as far as possible; and provide measures to help peaceful death. ̽��ֱ��results are published today in the journal PLOS ONE.

“Debate surrounding assisted dying goes to the heart of clinical ethical principles,” says Dr Gemma Clarke from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge. “Some argue that for a doctor to assist a patient to die is fundamentally inconsistent with their professional role, while others say that delaying death could increase unnecessary physical and psychological suffering, and that patients should have the right to autonomy over their own bodies.”

̽��ֱ��survey found very similar patterns in the views of British and American respondents. One in six (17%) expressed a preference for being tube fed when the condition had progressed to near the end of life, a stage where the quality of life available would, to many people, appear minimal. ̽��ֱ��researchers argue that this suggests that a significant minority have a moral view that life should be supported, even by invasive medical treatment, regardless of the family or medical team’s perception of the individual’s quality of life.

On the other hand, more than double this number (37%) chose to provide measures to help peaceful death at the final stages. This suggests that another, larger minority hold the view that death would be preferable to being sustained by artificial nutrition and hydration in these circumstances.

A preference for measures to preserve life at all costs, potentially involving deprivation of liberty peaked in response to stage 2. Around 30% of respondents would prefer to be forced to attend mealtimes, if experiencing short-term memory problems. However, half of these respondents would not wish this coercion to continue if the condition progressed such that being fed by mouth would require greater coercion such as the use of physical restraint. These respondents may be expressing a nuanced moral intuition: generally favouring preservation of life over respecting individual choice, particularly for potentially vulnerable people, provided that this can be achieved without resorting to physical force.

When it came to people’s liberty, more than four out of five respondents (82%) viewed it as wrong to force people to attend mealtimes if they lived in a care home and had full decision-making capacity. However, this falls to 70% who would not want to be forced to attend meals if they developed short-term memory difficulties, suggesting that the moral intuition to respect individual choice is tempered when there is some question about the patient's ability to appreciate the consequences of their choice, even if their capacity to make decisions remained sufficiently intact for the law to require that those decisions be respected.

Towards the latter stages, where an individual becomes comes increasingly incapacitated, again just over four out of five respondents (around 82%) would not want to be forcibly fed (force-feeding or tube-feeding). This suggests another widespread moral intuition: that when people patients have lost the ability to make decisions for themselves, life-sustaining treatment should be withheld if the risks and burdens are considered to outweigh the benefits.

“It appears that most people who would consider death to be preferable to artificially sustained life would only prefer this at a late stage of illness, when the quantity and quality of remaining life is limited,” says Dr Clarke.

̽��ֱ��researchers found that participants living in households with their children were less likely to choose “measures to help me die peacefully”, which they say is consistent with evidence that dependent children reduces suicide risk. Similarly, participants self- identifying as belonging to black or minority ethnic groups were also less likely to choose this option, suggesting that moral intuitions regarding care at the end of life are culturally influenced. This introduces additional complexity for legislators in multi-cultural societies, particularly where the ethnic and cultural composition of the legislature or medical profession is different to that of the general population.

Two factors increased the likelihood of respondents expressing a preference for “measures to help me die peacefully”: older age and personal or professional experience of similar illness. This may indicate generational differences in attitudes to end of life care, say the researchers, or that peoples’ views shift as they witness family and friends ageing and dying. They note that in 2015, the UK Parliament, the House of Lords, which has a mean age of 69 years, voted in favour of legalising assisted dying, but their younger counterparts in the House of Commons (mean age 50 years) rejected this measure.

“This is clearly a very complex issue, and surveys of public opinion haven’t always reflected the nuances of people's views,” says senior author Dr Stephen Barclay. “ ̽��ֱ��challenge for legislators is to enact legal frameworks that enable these diverse views and preferences to be respected. ̽��ֱ��challenge for health and social care professionals is to ensure optimal palliative and end of life care provision for all, in accordance with their wishes and preferences.”

̽��ֱ��research was funded by the Dunhill Medical Trust.

Reference
Clarke, G et al. Preferences for care towards the end of life when decision-making capacity may be impaired: A large scale cross-sectional survey of public attitudes in Great Britain and the United States. PLOS ONE; 5 Apr 2017; DOI: 10.1371/journal.pone.0172104

Public attitudes in UK and USA reveal support both for life-sustaining interventions and for measures to enable peaceful death in progressive neurological illness such as dementia, according to a survey carried out by researchers at the ̽��ֱ�� of Cambridge.

Debate surrounding assisted dying goes to the heart of clinical ethical principles

Gemma Clarke

Cristian Newman

Hands

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Questions of life and death

amb206 — Fri, 04 Nov 2016 12:30:00 +0000

Toast is burning in one of the ward kitchens at St Christopher’s Hospice in south London. Members of the nursing staff rush to open the windows, laughing at this minor disaster. In a room down the corridor a young man called Kevin is confronting a future in which he will play no part. He’s married with two young children – and has terminal cancer. Imagining his boys growing up without him is more painful than the disease destroying him. Kevin and his wife have accepted that he will soon be gone: she wants him to die at home but he doesn’t want to frighten his sons.

These are just two of the moments captured in ̽��ֱ��Time to Die a documentary made in the 1990s by Nikki Stockley. Commissioned by the BBC, the film addresses a subject that remains taboo for many of us: death. Stockley focuses on three people whose lives are ending. They and those they love share their feelings. Doris hopes she won’t linger: she doesn’t want to die “inch by inch”. Hazel has lost interest in clothes and no longer looks in the mirror. She has told the hospice staff that she wants to die at home. Her boyfriend fears he would not cope; often he feels like running away.

Earlier this year, academics from three different disciplines (Emma Wilson, Professor of French Literature and the Visual Arts, Dr Stephen Barclay, Senior Lecturer in General Practice and Palliative Care, and Dr Robbie Duschinsky, Lecturer in Social Sciences) sat down to plan a seminar series that would encourage a broad dialogue about care and dying, using the medium of film as a framework. Wilson, who has a specialist interest in film, proposed that ̽��ֱ��Time to Die would make a powerful starting point.

Wilson said: “What I admire so much about Nikki’s documentary is the openness of the interviews, Nikki’s presence, her connection to her subjects, allowing complex emotions to be put into words. It feels like a work of accompaniment, very patient, very calm, opening up possibilities for a non-intrusive presence of the camera in this community, and a tender, caring work of editing, piecing together a visual narrative.”

̽��ֱ��first of five seminars planned for the current academic year took place last week. Revd Dr Derek J Fraser, lead chaplain at Addenbrooke’s Hospital, talked about the role of his team in supporting patients and those close to them. A screening of ̽��ֱ��Time to Die was followed by a Q and A. Stockley took questions from an audience who included health professionals, members of the public, counsellors and representatives from local hospices. ̽��ֱ��making of a documentary about so sensitive a topic prompted questions about the relationships involved and the editing process.

Stockley spent four weeks filming at St Christopher’s. ̽��ֱ��Time to Die is, perhaps most importantly, a tribute to those it features, the patients and staff of a hospice acknowledged to be a pioneer in end-of-life care. She spoke of the closeness that developed between her team and the people they filmed – and her own emotional response. “I needed to remind myself that my sadness was nothing compared to those I was filming.” She also talked about the difficulty of negotiating a commission to make a film looking at death.

Junior doctors can expect to deal with as many as 40 to 50 deaths a year in the course of their work. Yet most people, in a society that protects itself from the reality of human frailty and mortality, have never witnessed death close up. Stockley suggested that film could offer a “safe way” of exploring some of the things we ask ourselves (how do people die, what’s it like to die) but seldom give voice to. Even the staff at St Christopher’s seldom talk about their own deaths. Medical statisticians have their devised their own code for death – they call it 'negative patient outcome'.

If ̽��ֱ��Time to Die is brave, it is also deeply respectful – and quite rightly so. Film, certainly not one made for general viewing, cannot convey the emotional rawness of death. Death has a smell. It can be messy and protracted. It’s exhausting and deeply sad. Death affects the professionals involved as well as patients and their loved ones. At one point in the documentary, a nurse is overcome by emotion and fights back tears. How do we negotiate the line between personal and professional?

Several Cambridge ̽��ֱ�� medical students attended the seminar. Chris Kassam said: “Working with patients at the end of life can leave you feeling overwhelmed by the magnitude of the experience, and the easy option is to withdraw behind a mask of professionalism. I think the film and discussion helped me to realise that what patients and their families may need most at such times is not a doctor but another human being to simply be there with them."

Health care assistants are among the front line staff who get to know patients best. Aiden Ferguson, a healthcare assistant at Addenbrooke's, said the documentary demonstrated that "professionalism is not nearly enough". He commented: " ̽��ֱ��film crystallises the importance of connecting with others in a way that is deeply present and true - and these connections can be forged with patients who have a terminal diagnosis and those who do not, with friends and family, with someone unknown."

Despite the sadness of its subject matter, there is a gentle optimism about ̽��ֱ��Time to Die – and many of the scenes it captures are revelatory. Patients in palliative care, says a nurse, find it “quite comforting” to see other patients immediately after death. St Christopher’s doesn’t cover the faces of those who die. Instead a single flower is placed on the pillow as the body is wheeled away. Interviews with relatives are reminders that life goes on. “I’ve thrown away his toothbrush,” says Kevin’s wife, shortly after his death. “And now I’m looking at the shoes he wore last time he came home.”

Doctors like to fix things: they train in medicine because they like solving problems and want to make people better. In his introduction, Barclay suggested that this impulse is at the root of the profession’s difficulties with handling death and bereavement.

̽��ֱ��Time to Die is a portrait of a hospice dedicated to end-of-life care. A general hospital faces different pressures, many of them driven by time. Fraser said that time was not always the critical factor – it was often a question of finding the right moment and language for a fairly brief conversation. A personal loss had, he said, “changed profoundly” how he approached his role at Addenbrooke’s. “I’ve learnt that there is sometimes nothing to say – no solution. But to validate sadness is so important.”

Among the professionals in the audience was Michelle Reynolds, Acting Head of Staff Counselling at Cambridge ̽��ֱ��’s Counselling Service. She said: “ ̽��ֱ��combination of the film and Fraser’s own testimony made the seminar an evocative experience. Twenty years have passed since the making of the documentary – and the need for good palliative care is as great as ever. Death doesn’t change its impact on the family, friends and the professionals involved. No-one is immune.”

We don’t know when or how we will die: death is one of the life processes that defies organisation. But with careful planning, an acknowledgment of our wishes and the support of skilled professionals and loving family and friends, there is much we can do. ̽��ֱ��Time to Die shows no happy endings but demonstrates how much caring means. Kevin dies at St Christopher’s, as he had wanted, with his wife with him. Hazel dies at home, quietly and gently in her boyfriend’s arms. Standing in a rainswept churchyard after Hazel’s funeral, he is quietly proud.

̽��ֱ��seminar series continues on Wednesday, 9 November 2016 with guest speakers Professor Bee Wee, NHS England's National Clinical Director for End of Life Care and Dr Anna Elsner, ̽��ֱ�� of Zurich. Professor Wee will discuss developments in national policy and practice in palliative and end of life care since the withdrawal of the Liverpool Care Pathway for the Dying. Dr Elsner will discuss a documentary exploring end-of-life care in Switzerland, 'Die weisse Arche'/' ̽��ֱ��white ark' (2015) and the Ars Moriendi (arts of dying) tradition. All welcome, no charge, booking required.

Inset image: Physician; credit: Yuya Tamai.

An ambitious seminar series began last week with a discussion of a remarkable documentary. Filmed in a pioneering hospice, ̽��ֱ��Time to Die addresses a subject that remains taboo for many. Joining the conversation are health professionals, medical students and members of the public, as well as those interested in film and ethics. ̽��ֱ��series continues on 9 November 2016.

̽��ֱ��film and discussion helped me to realise that what patients and their families may need most is not a doctor but another human being to simply be there with them.

Chris Kassam, medical student

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Life and death

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‘Missing’ data complicate picture of where patients choose to die

cjb250 — Tue, 10 Nov 2015 19:00:51 +0000

End-of-life care policy in the UK has a focus on enabling patients to die in their preferred place, believed for most people to be home, although whether home is always the best and preferred place of death is of increasing debate.

A systematic review of 61 studies, published today in the open access journal PLOS ONE, which looked at adult preferences for place of death, found that when missing preferences – where the views of participants with no clear preference, or who were unwilling or unable to express or communicate a preference – are taken into consideration, the picture becomes far less clear.

Researchers at the Primary Care Unit and Cambridge Institute of Public Health found that when missing data were excluded, the majority of those questioned preferred to die at home. However, when the large amount of missing data were included in the analysis, it was no longer clear whether home was where most participants with cancer or other conditions preferred to die.

In many reports a large proportion of participants’ preferences were missing. ̽��ֱ��missing preferences are likely to represent preferences that were not asked or not expressed. Preferences may have been missing because participants were not given the opportunity to state their preference, and so could reflect the difficulty healthcare professionals have in holding conversations about end of life care. Preferences could also be absent because participants did not have a preference to share, which may suggest that place of death is less important to patients than other end of life care issues. Regardless of the reasons, the study authors argue that the exclusion of missing preferences inflates the significance of recorded preferences.

Sarah Hoare, a PhD student at the Cambridge Institute of Public Health, first author of the study, says: "Our review has shown that there is a substantial amount of missing data on UK participants’ preferences for place of death. We do not know what locations, if any, these ‘missing’ preferences are for and so we need to be careful about claiming that the majority of patients wish to die at home.”

While surveys of the general public, even with missing data included, tended to show a strong majority preference for dying at home, there was more variability amongst patients and family members reporting patient preferences. For these groups the extent of missing data meant it was not known what proportion preferred home.

̽��ֱ��researchers believe that the variance found between the preferences of the general public and patients could in part be explained by differences in data collection. For example, information provided about the general public was often drawn from large surveys while patient preferences were often collected from patient records. ̽��ֱ��differences between public and patient preferences may also in part be attributed to the different meanings given by respondents to questions about preferred place of death.

Dr Stephen Barclay, the study’s senior author, adds: “ ̽��ֱ��extent of missing data has major implications for clinical practice. We need to know why patients’ preferences have not been recorded. Is it because they do not have a preference, which in itself needs to be recognised as a legitimate opinion? Or does it reflect the difficulty that healthcare professionals have in holding conversations on this sensitive issue, and so patients have not been given a clear opportunity to state a preference?”

“Surveys of the general public are valuable in assessing public opinion, but they do not appear to reflect dying patient preferences,” adds Ms Hoare. “Likewise, family members do not appear to necessarily reflect patients’ views. This has implications for UK health policy which relies on next-of-kin reports for assessing quality in end-of-life care.”

Reference
Hoare, S et al. Do patients want to die at home? A systematic review of the UK literature, focused on missing preferences for place of death. PLOS ONE; 10 November 2015

An NIHR-funded study from the ̽��ֱ�� of Cambridge has raised questions about the widely-held assumption that most patients at the end of their lives prefer to die at home rather than a hospice or hospital.

Surveys of the general public are valuable in assessing public opinion, but they do not appear to reflect dying patient preferences

Sarah Hoare

Gábor Kovács

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