Dying comfortably in very old age with or without dementia can be improved with good end-of-life training at home or in a care home, rather than a hospital bed.
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 University 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.
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.
The 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. “The 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.”
The 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 University 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.”
The 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.