̽��ֱ�� of Cambridge - Morag Farquhar

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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“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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Every breath you take

cjb250 — Tue, 18 Aug 2015 09:00:00 +0000

We all feel breathless from time to time: we’ve run for the bus, we’ve climbed a steep hill, we’ve cycled quickly to a meeting we’re late for. For some people, however, even the smallest of exertions – walking to the bathroom, getting dressed, even talking – can bring on a shortness of breath.

Daily, long term breathlessness is almost certainly a sign of an underlying, and often serious and advanced, condition such as chronic obstructive pulmonary disease (COPD), which causes inflammation of the lungs. It can also occur in some advanced cancers. Both are conditions that cannot be cured, only managed.

“There’s been lots of research done into symptoms of advanced disease such as pain and there are good treatments – both pharmacological and non-pharmacological – but it’s a different situation with breathlessness,” says Dr Morag Farquhar from the Department of Public Health and Primary Care at the ̽��ֱ�� of Cambridge.

For several years now Farquhar has been involved with the Breathlessness Intervention Service (BIS), set up by Dr Sara Booth at Addenbrooke’s Hospital in Cambridge who, importantly, saw the need to formally evaluate the service.

Unusually for an outpatient service, the service is often delivered in patients’ homes. “A lot of these people are too breathless to leave the house,” explains Farquhar. There is another, important reason why it is beneficial to visit patients in their own home, and that is to see the patient in their own environment, so that the intervention – advice and treatment – can be tailored specifically to their circumstances.

“BIS is what’s known as a ‘complex intervention’, one that has a number of different components, often delivered by a number of different healthcare professionals,” says Farquhar, who has been involved in developing and evaluating the service in collaboration with Booth, with funding from the National Institute of Health Research, Macmillan Cancer Support and the Gatsby Foundation.

BIS is not aimed at everyone who is living with breathlessness, she explains, but rather at those who are struggling with the condition – and this applies both to patients and their carers. “Breathlessness can be very frightening for family members who are caring for their loved one. They often struggle to know what to do. They will do things like keeping asking how they can help, and of course the patient can’t respond as they can’t speak. Or they’ll take the approach where they won’t let the patient do anything because they’re worried it’s going to make them breathless – but this is counterproductive, as the patient will get muscle wasting and weakness and so will get breathless more easily.”

̽��ֱ��intervention is multidisciplinary: patients have access to palliative care consultants, specialist occupational therapists and physiotherapists, and psychologists if needed. It involves both pharmacological approaches – such as medicines, oxygen and anti-anxiety medication – and non-pharmacological strategies. These include teaching the patient how to break the cycle of anxiety, using meditation and relaxation techniques.

Patients are also taught how to plan and pace themselves – where previously a trip to the supermarket might have seemed overwhelming, if they can learn how to plan their trip, think about how they can break it into small, manageable steps that allow them to keep breathing steadily, then it can once again become achievable.

Small, hand-held fans can also help a patient recover their breath, and it was here that Farquhar and Booth’s evaluation threw up something surprising: when they asked patients and carers about the fans, they said it was as much about how the fans were presented to them. By “delivering” the fans, rather than just “giving” them, as Farquhar puts it, the patients had greater success.

“[ ̽��ֱ��BIS clinicians] didn’t just give the patients the fans and say ‘Here, use this’, because the patients would’ve just thought ‘Well, that’s not going to work’. It was the fact that they showed them how to sit, how to use it, explained how it worked – this gave it credibility.”

̽��ֱ��BIS team have had interest from a number of other hospital trusts around the UK, some of whom now have services modelled on BIS, but there has yet to be a nationwide adoption of the service. It is across the Atlantic in Canada, however, that BIS has arguably had the greatest impact.

In 2006, Farquhar and Booth met Professor Graeme Rocker, from the Department of Medicine at Dalhousie ̽��ֱ��, Halifax, Nova Scotia, during a meeting in London. He was already “moving in the direction of more community-based care”, he says, but was impressed by the work of the BIS collaboration. He was particularly inspired by their emphasis on listening to patients and getting a better sense of their symptoms that was independent on any particular diagnosis. “I already had some ideas how I should run the service but could see that the Cambridge team was much more clued in to effective evaluation of complex interventions.”

Rocker went on to develop the appropriately-named INSPIRED (Implementing a Novel and Supportive Program of Individualized care for patients and families living with Respiratory Disease) and adapted Farquhar and Booth’s approach to evaluating its success.

And the statistics show just how effective INSPIRED has indeed been. Its outreach programme for tackling breathlessness in COPD led to a 60% drop in visits by patients to emergency rooms and for hospital admissions. INSPIRED is now being emulated by 19 teams across the 10 Canadian provinces.

Rocker is grateful to the Cambridge team. “I would not have been successful with INSPIRED had I not learned from BIS, and particularly from Morag, the importance of evaluation. It’s invaluable for proving to hospital administrators that you have a programme that works.”

In 2014, Farquhar, Booth and colleagues published the results of a randomised controlled trial which found that BIS was more effective – and cost-effective – for treating patients with advanced cancer than standard care. Almost all the participants reported a positive impact, with reduced fear and worry, and increased confidence in managing their breathlessness.

It was the accumulation of tips and strategies, which build up into something bigger, that patients and carers told Farquhar made the intervention so helpful. Patients and carers recognise that the condition isn’t going to go away, but they now have a new way of living with their breathlessness.

“One of the most powerful things they talk about is how the service teaches them that breathlessness won’t kill them. People are frightened that the next episode of breathlessness might finish them. They find it liberating to be told by a professional that it won’t.”

Reference
Farquhar, MC et al. Is a specialist breathlessness service more effective and cost-effective for patients with advanced cancer and their carers than standard care? Findings of a mixed-method randomised controlled trial. BMC Medicine; 31 Oct 2014.

Shortness of breath can be terrifying for both patients and the family and friends who support them. Cambridge clinicians and researchers have developed a way of helping patients manage the condition – but the key lies in how the intervention is delivered.

People are frightened that the next episode of breathlessness might finish them

Morag Farquhar

Harry (Howard) Potts

Dandelion clock (cropped)

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