̽��ֱ�� of Cambridge - Jane Fleming

Study identifies factors linked to dying comfortably for the very old

cjb250 — Thu, 05 Oct 2017 08:22:01 +0000

In a study published in the journal BMC Geriatrics, the researchers argue that their findings highlight the need to improve training in end-of-life care for all staff, in all settings, and in particular to address the current shortage of palliative care doctors in the NHS.

As life expectancy increases, so more and more people are dying at increasingly older ages, often affected by multiple conditions such as dementia, heart disease and cancer, which make their end-of-life care complicated. In the UK, in just a quarter of a century the proportion of deaths occurring at the age of 85 or older has risen steeply from around one in five in 1990 to almost half of all current deaths.

Older people living with dementia commonly report multiple symptoms as they approach the end-of-life, and if these symptoms are not adequately controlled, they may increase distress and worsen an individual’s quality of life.

While some people close to the end-of-life may prefer to die at home, only a minority of the ‘oldest old’ (those aged 85 years and above) actually die in their own homes. In the UK, fewer older people die in hospices or receive specialist palliative care at home than younger age groups, and the trend for older deaths is gradually moving away from death in hospital towards long-term care facilities.

Little is known about symptom control for ‘older old’ people or whether care in different settings enables them to die comfortably. To address this gap in our knowledge, researchers from the Cambridge Institute of Public Health examined the associations between factors potentially related to comfort during very old people’s final illness: physical and cognitive disability, place of care and transitions in their final illness, and place of death. This involved a retrospective analysis of data for 180 study participants aged between 79 and 107 years.

̽��ֱ��researchers found that just one in 10 participants died without symptoms of distress, pain, depression, and delirium or confusion, and most people had in fact experienced combinations of two or more of these symptoms. Of the treatable symptoms reported, pain was addressed in the majority, but only effectively for half of these; only a fraction of those with depression received treatment for their symptom.

Compared with people who died in hospital, the odds of being reported as having died comfortably were four times as high for people whose end-of-life care had been in a care home or who died at their usual address, whether that was their own home or a care home.

People living in the community who relied on formal services for support more than once a week, and people who were cared for at home during their final illness but then died in hospital, were less likely to have reportedly died comfortably.

“How we care for the oldest members of society towards the end of their lives is one of the big issues for societies across the world,” says Dr Jane Fleming from the Department of Public Health and Primary Care, the study’s first author. “ ̽��ֱ��UK is not the only country where an urgent review of the funding for older people’s long-term care is needed, along with commitments to staff training and development in this often undervalued sector.

“It’s heartening that the majority of very old people in our study, including those with dementia, appear to have been comfortable at the end-of-life, but we need to do more to ensure that everyone is able to die comfortably, wherever they are.”

̽��ֱ��authors of the study argue that it highlights the need to improve training in end-of-life care for all staff, at all levels and in all settings.

“Improving access to supportive and palliative care in the community should be a priority, otherwise staying at home may not always be the most comfortable setting for end-of-life care, and inadequacies of care may lead to admission before death in hospital,” adds co-author Dr Morag Farquhar, who is now based at the ̽��ֱ�� of East Anglia.

Contrary to public perceptions, the authors say their study demonstrates that good care homes can provide end-of-life care comparable to hospice care for the very old, enabling continuity of care from familiar staff who know their residents. However, they say, this needs recognising and supporting through valuing staff, providing access to training and improving links with primary and community healthcare providers.

“In the UK, we particularly need to address the current shortage of palliative care doctors in the NHS, where training numbers are not going up to match demand, but the shortage is even greater in developing countries,” says co-author Rowan Calloway.

“In the future, community care will be increasingly reliant on non-specialists, so it will be crucial that all members of the multi-disciplinary teams needed to support very frail older people near the end of their lives have good training in palliative and supportive care skills.”

̽��ֱ��study was supported by the Abbeyfield Society, Bupa Foundation, Medical Research Council, and the National Institute for Health Research Collaboration for Leadership in Applied Health and Care Cambridgeshire & Peterborough.

Reference
Fleming, J et al. Dying comfortably in very old age with or without dementia in different care settings – a representative "older old" population study. BMC Geriatrics; 26 Sept 2017; DOI: 10.1186/s12877-017-0605-2

Key findings and policy implications

̽��ֱ��Cambridge City over - 75s Cohort Study

Very old people are more likely to die comfortably if they die in a care home or at home, compared with dying in a hospital, suggests a new study from the ̽��ֱ�� of Cambridge. Yet while the overwhelming majority of very old people reported symptoms at the end of life such as distress, pain and depression, the study found that these were not always treated effectively.

How we care for the oldest members of society towards the end of their lives is one of the big issues for societies across the world

Jane Fleming

Sheila Sund

Rose by Pool

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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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