What is the evidence that people living with frailty have needs for palliative care at the end of life?
16 April 2019
Originally published as Editor's choice from Palliative Medicine (April 2019), in the European Association for Palliative Care (EAPC)
Daniel Stow, PhD Student, Institute of Health and Society, Newcastle University, Newcastle upon Tyne, UK, explains the background to his longer article selected as Editor’s Choice in the April issue of ‘Palliative Medicine’.
People are now living longer than ever before, something we should celebrate. But it also means that more people are living with frailty as they grow older, and some are dying without ever receiving a diagnosis associated with terminal care. Frailty is often described as something that increases your vulnerability to health stressors. This means people living with frailty are less likely than those without frailty to make a full recovery from what would otherwise be relatively minor health complaints. Frailty also increases the likelihood of death. This has, understandably, led to suggestions that people living (or dying) with frailty should receive palliative care.
Age should never be a barrier to good care, but beyond the increased likelihood of death it isn’t clear what needs people living with frailty have that palliative care could address. What symptoms do people living with frailty have? What are their psychosocial needs? Do they have needs that palliative care could help with, and are current palliative services configured to address those needs?
These were some of the questions that arose during the early stages of my PhD, which looks at frailty and end-of-life care. The main focus of my work has been to investigate whether a routinely available frailty measure could help family doctors to identify people with frailty who are nearing the end of life. But to start with, I looked at published evidence, to try and answer my first question – what are the care needs, of people dying with frailty?
People with frailty have often reached a great age – but they may still benefit from all the things that palliative care does so well."
In a systematic review of twenty international studies (most from North America), we found evidence that people with frailty have a range of physical needs (such as pain) and psychosocial needs (like emotional distress) as they near the end of life. Often these needs were higher amongst people with frailty, compared to people who were not frail. Crucially, these needs were experienced as often by people with frailty, as people who were dying with other recognised end-of-life diagnoses, such as cancer, motor neurone disease and kidney failure. People with frailty were also more likely to require help when bathing and eating as they approached the end of life.
These findings suggest that people with frailty near end of life may benefit from having their needs assessed, and the type of needs point to a role for generalists in primary care. However, research from hospitals, at critical phases of care, was dominant in the review, probably because frailty assessment has been more common in hospital settings. Nevertheless, this may be an area where empirical research in a wider range of settings is needed.
We were delighted to hear that our systematic review was selected as Editor’s Choice for the April edition of Palliative Medicine (https://doi.org/10.1177/0269216319828650).
I hope that the take home message is clear: it is really important to think about the needs and preferences of people dying with frailty, and to remember that their needs and preferences may change as they approach death.