̽��ֱ�� of Cambridge - dying

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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̽��ֱ��Vice-Chancellor’s Dialogues: Is assisted dying compassionate, or dangerous for society?

mjn29 — Thu, 09 Nov 2023 14:02:51 +0000

There are two purposes to these events. ̽��ֱ��first, is to establish whether there is any common ground between people who may seem to be far apart. If we are to make progress in legislation or in understanding the world we live in, we need to identify where we agree as well as where we disagree. ̽��ֱ��second, is to ensure discussions involve the widest range of viewpoints – that nothing, within the law, is taboo and that freedom of speech and of thought, and of academic debate, is upheld.

̽��ֱ��first event tackled, literally, a matter of life and death: the question of whether assisted dying is compassionate, or dangerous for society.

̽��ֱ��speakers were:

Dr Jonathan Romain, who was appointed Chair of Dignity in Dying, the UK’s leading campaign for a change in the law on assisted dying, in June 2023
Dr Amy Proffitt, who spoke for Dying Well, the group promoting access to excellent care at the end of life and standing against the legalisation of assisted suicide
Dr Zoë Fritz, a Wellcome fellow in Society and Ethics at the ̽��ֱ��, and a Consultant Physician in Acute Medicine at Addenbrooke’s Hospital. She works with colleagues in the ̽��ֱ��'s Faculties of Law and Philosophy to ensure solutions are philosophically grounded and legally robust, as well as clinically practical and acceptable to all stakeholders.

On 8 November 2023, Vice-Chancellor Professor Deborah Prentice chaired the first Vice-Chancellor’s Dialogues. ̽��ֱ��event launched a series of dialogues about some of the most difficult issues of our time.

Cambridge Vice-Chancellor's Dialogues: Is assisted dying compassionate or dangerous for society?

Vice-Chancellor Professor Deborah Prentice chaired the first Vice-Chancellor’s Dialogues

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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

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Opinion: Here’s what people in their 90s really think about death

Anonymous — Thu, 19 May 2016 19:42:31 +0000

Across the developed world more people are living longer, which of course means more get to be extremely old by the time they die. Nearly half of all deaths in the United Kingdom are in people aged 85 or older, up from only one in five just 25 years ago.

Dying in older age can mean a different sort of death, such as becoming gradually frailer in both body and mind and developing numerous health problems over many years. Where years after retirement were previously considered just old age, a longer life span means the later years now include variation reflected in labels such as younger old and older old.

Our previous research showed people who are over 90 when they die need more support with daily life in their last year than even those who die in their late 80s. In the United Kingdom, around 85% of those dying aged 90 or older were so disabled as to need assistance in basic self care activities. Only 59% of those between 85 and 89 at death had this level of disability.

This knowledge has implications for planning support for life and death in different care settings. But what do we know about what the older old (95 plus) people actually want when it comes to decisions about their care as they approach the end of their lives?

How the older old feel about dying

̽��ֱ��oldest and frailest in our society are becoming less visible as many who need the most support, such as those with dementia, are either in care homes or less able to get out and about. But their voices are crucial to shaping end-of-life care services.

In our latest research, we had conversations about care experiences and preferences with 33 women and men aged at least 95, some over 100, and 39 of their relatives or carers. Of these, 88% were women, 86% were widowed and 42% lived in care homes.

Death was part of life for many of the older people who often said they were taking each day as it comes and not worrying too much about tomorrow. “It is only day-from-day when you get to 97,” said one woman. Most felt ready to die and some even welcomed it: “I just say I’m the lady-in-waiting, waiting to go,” said one.

Others were more desperate in their desire to reach the end. “I wish I could snuff it. I’m only in the way,” was a typical sentiment in those who felt they were a nuisance. Others begged not to be left to live until they were a hundred, saying there was no point to keeping them alive.

Most were concerned about the impact on those left behind: “ ̽��ֱ��only thing I’m worried about is my sister. I hope that she’ll be not sad and be able to come to terms with it.”

̽��ֱ��dying process itself was the cause of most worries. A peaceful and painless death, preferably during sleep, was a common ideal. Interviewees mainly preferred to be made comfortable rather than have treatment, wishing to avoid going into hospital.

We found families’ understanding of their relative’s preferences only occasionally incorrect (just twice). For instance, one person said they wanted to have treatment for as long as they could, while their family member believed they would prefer palliative care. This highlights the importance of trying to talk options through with the older person rather than assuming their family knows their views.

We found most discussed end-of-life preferences willingly and many mentioned previous talk about death was uncommon, often only alluded to or couched in humour. A minority weren’t interested in these discussions.

Most of the older old don’t fear death and some even look forward to it. Broo_am (Andy B)/Flickr, CC BY

We need to talk with the older old

It’s rare to hear from people in their tenth or eleventh decade but there are some studies that have explored the views of the younger old. Most often these have concentrated on care home residents and occasionally on those living at home.

A literature review conducted in Sweden in 2013 found a total of 33 studies across the world that explored views of death and dying among older people, although very few of these sought the views of the older old.

A 2002 study found older people in Ghana looked forward to death, seeing it as a welcome visitor that would bring peace and rest after a strenuous life. And a 2013 study in the Netherlands showed many people changed their preferences on how they wanted to die as their care needs changed.

A recent review examined older people’s attitudes towards advance care plans and preferences for when to start such discussions. It identified 24 studies, mainly from the United States and with younger old age ranges. ̽��ֱ��results showed that while a minority shirked from end-of-life care discussion, most would welcome them but were rarely given the opportunity.

These studies support our findings on older people’s willingness to discuss often taboo topics, their acceptance of impending death, and their concerns around what the dying process would bring: increasing dependence, being a burden and the impact of their own death on those left behind.

To plan services to best support rising numbers of people dying at increasingly older ages in different settings, we need to understand their priorities as they near the end of life.

Jane Fleming, Senior Research Associate, ̽��ֱ�� of Cambridge

This article was originally published on ̽��ֱ��Conversation. Read the original article.

̽��ֱ��opinions expressed in this article are those of the individual author(s) and do not represent the views of the ̽��ֱ�� of Cambridge.

Jane Fleming (Department of Public Health and Primary Care) discusses attitudes to death among the very old.

Pat Pilon

Pat, August 20, 2011 - Curb

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“It’s not worth me having a long-life lightbulb”: Attitudes to death among the very old

cjb250 — Tue, 05 Apr 2016 18:00:10 +0000

Improvements in our environment and lifestyles, as well as significant medical and healthcare advances, mean that more and more people are living to a very old age. According to a report published last year by the Office of National Statistics, the number of people aged 90 or more at the time of their death has tripled in the past three decades in the UK.

“Despite the dramatic rise in the number of people living into very old age, there is far too little discussion about what the ‘oldest old’ feel about the end of their lives,” says Dr Jane Fleming from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge, who led the study. “We know very little, too, about the difficult decisions concerning their end of life care.”

In a study part-funded by the National Institute for Health Research, researchers interviewed 33 people over 95 years old from the Cambridge City over-75s Cohort and for 30 of these and for 9 people too frail to be interviewed in person, a ‘proxy’ – a relative or member of care-home staff, for example – about attitudes towards death, dying and end-of-life care. ̽��ֱ��responses are at times poignant and occasionally humorous, but provide a fascinating perspective on the views of an often overlooked minority.

̽��ֱ��age of the older people was so great that most of their contemporaries had died, so death was a regular feature of life and many spoke of living on borrowed time. “As people get older, as their friends die, there’s an element of ticking them off,” said one proxy.

Many of the older people referred to “taking each day as it comes”, expressing thankfulness for where they were in life and content, at this stage, to take life one day at a time, not worrying too much about tomorrow. There was a sense of life ticking along until something drastic happened. “It is only day-from-day when you get to ninety-seven,” said one.

Although one interviewee described only being “three-quarters of the way” through their life, others knew and accepted that they were going to die soon. One son-in-law describes his elderly mother-in-law giving a long-life light bulb to her granddaughter, saying: “Something for you, it’s not worth me having”. Most of the interviewees felt ready to die. “I’m ready to go,” said one woman. “I just say I’m the lady-in-waiting, waiting to go.” Some felt they were a nuisance to others, while others were more desperate in their desire to reach the end, suggesting they had simply lived too long. “Please don’t let me live ’til I’m a hundred,” one woman said to her proxy.

Several proxies discussed conversations that they had had about euthanasia. A son described a vivid memory of accompanying his mother to visit one of her friends who had dementia: “She said ‘Gordon, if I ever get like that, for goodness sake put a...’, it was her words, not mine, ‘put a pillow over my head, will you?’”

Most were not afraid of dying, either reporting that it did not worry them or their proxies saying they had not expressed any worries or fears about it. For some this absence of fear was rooted in positive experiences of others’ dying: One interviewee said of her parents: “They were alive, then they were dead, but it all went off as usual. Nothing really dramatic or anything. Why should it be any different for me?”

Proxies reported that death was rarely talked about: “That generation, they didn’t actually discuss death much, I don’t think,” said one. A few, however, talked openly about death and the future – one proxy described a conversation: “She said, ‘I should think I’ll snuff it soon, don’t you?’ I said, ‘I don’t know, you tell me’ and she just laughs. I mean, she… You can laugh with her about it, you know.”

Discussion of funeral preferences was more common than talking about death, although the extent of discussions varied. Some had made their preferences clear and had made plans themselves and paid for their funerals in advance. Others noted the difficulties of discussing funerals – one proxy described a conversation with her mother: “I said, ‘Do you think you would want to be buried or cremated?’ And she said, ‘Well, cremated, I think.’ I find it very difficult talking to her. I don’t feel that I can. You see, I say to my children ‘Oh, that’s a nice song on the radio. Oh, perhaps I’ll have that at my funeral’. And you couldn’t to my mum.”

̽��ֱ��manner of death was of more concern than its imminence. Although some said they had not really thought about dying, many explicitly expressed the wish to die peacefully, pain free and preferably while asleep – to “just slip away quietly.”

“I’d be quite happy if I went suddenly like that,” said one interviewee, snapping their fingers.

When asked whether, if they had a life-threatening illness, they would want to receive treatment that would save their life or prefer treatment that would just make them comfortable, few people chose life-saving treatment. “Make me comfortable” was a far more typical response and proxy informants tended to echo the older people’s dominant preference for comfort rather than life-saving treatment.

Few people wanted to be admitted to hospital in the event of such an illness, though rarely gave reasons. One care home manager explained about her resident: “If she went to [hospital] quite poorly, I think she would be full of anxiety and I think it would exacerbate any illness she had. I think she would find it alarming actually.”

Family members were often aware of preferences. One niece said of her aunt: “She's dead against going. She doesn't like hospitals. She doesn't want to go.” Her aunt, she said just wanted to go to bed and go to sleep without going into hospital – “I think that's her ideal, just dying in her own home.”

A handful of interviewees viewed well-intended medical interventions as prolonging life unnecessarily, an issue usually, but not exclusively, raised by proxy informants. One 98-year-old couldn’t “see any point in keeping people alive”. One proxy described being annoyed when the doctor gave her relative a pneumonia injection: “She had no quality of life… was ready to go … [but] there was no consultation with us at all about it.”

“Death is clearly a part of life for people who have lived to such an old age,” says Dr Fleming, “so the older people we interviewed were usually willing to discuss dying, a topic often avoided.” However, most had only had discussions regarding end-of-life preferences with health care professionals, rarely with family members. Nonetheless proxies tended to feel they knew their relative’s preferences, though the study found in a couple of instances relatives’ guesses were wrong. A care home manager commented that it was not necessarily with older people themselves that professionals broached the topic: “Historically what happens in hospitals is they tend to... if it’s not asked beforehand they go straight to the relatives. They won’t broach it with the individual, which is actually […] against the Data Protection Act, and it’s nobody else’s business. But it is how the culture of hospitals works unfortunately.”

However, the same care home manager pointed to the practical difficulties of having conversations about end-of-life care preferences: “I’ve not had long discussions, because of [her] hearing problem. It’s very difficult to write them down on paper. And she’s got to shout the answer back at you and you’ve got to re-clarify it.”

“In our previous research we found the majority of people who die in their 90s or 100s are dependent on others because of very high levels of disability and cognitive impairment by the last year of life,” explains Dr Fleming. “Over recent decades most people dying in very old age have moved into care in their final year or died in hospital. To plan services to best support rising numbers of people dying at increasingly older ages we need to understand their priorities as they near the end of life.”

“Now so many more people have reached a great age before they die, it’s important we know about their views and their concerns, particularly in relation to end-of-life care,” says Dr Morag Farquhar, the study’s other lead author. “These are difficult conversations to have and no one wants to have to face their own death or that of a loved one. But having these conversations before it is too late can help ensure that an individual’s wishes, rather than going unspoken, can be heard.”

Reference
Fleming, J., Farquhar, M. et al. Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care – Qualitative Research within a Population-Based Cohort Study. PLOS ONE; 5 April 2016; DOI: 10.1371/journal.pone.0150686

Death is a part of life for people over 95 years old, who mainly live day-to-day, concludes a rare study of attitudes to death and dying amongst the very old. ̽��ֱ��research, from the ̽��ֱ�� of Cambridge and published today in the journal PLOS ONE, finds that this group is willing to discuss dying and their end-of-life care, but is seldom asked.

“She said ‘Gordon, if I ever get like that, for goodness sake put a...’, it was her words, not mine, ‘put a pillow over my head, will you?’”

Juhan Sonin

Memm, 100 years in the making (cropped)

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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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