What is palliative care and who should get it?
Definitions of palliative care1,2 specify a holistic, person-centred approach; most patients would prefer care like this at any stage of their life, and most clinicians would aspire to provide it for everyone. But these definitions also specify the kind of people who should be offered palliative care: those with ‘serious or life-threatening health problems’ 1 or ‘a life-limiting (terminal) illness’.2 Practical initiatives like the UK’s Daffodil Standards3 narrow the eligibility criteria, offering guidance about ‘advanced serious illness and end of life care’ and thus introducing a prognosis-based criterion. Unfortunately, ‘advanced’ is vague, and the end of life is variously defined as someone’s last year or days4 or anything in between, and can be identified with certainty only in retrospect. So deciding whether someone is eligible for palliative care is inevitably a subjective process, and identifying those with palliative care needs rests on clinicians reliably and consistently recording their judgements. Despite these challenges, UK GPs are enjoined to create palliative care registers3 and include more people, identifying them earlier;5 so Leach et al’s research6 into patients’ and carers’ experiences of being placed on such a register is welcome.
Unfair shares of limited resources
In the UK, most community palliative and end-of-life care is provided by GPs and community nurses, supported when needed by palliative care specialists. These are people whose time and energy are thinly spread, which can mean that better care for one patient group means worse care for another group. For example, in a study examining palliative care for older people,7 community nurses described using ‘end of life’ or ‘palliative’ as labels to prioritise care for those with the label, particularly as regards urgency and access to specialist support. The nurses acknowledged that this prioritisation disadvantaged frail older people who generally lacked a ‘palliative’ label. These accounts illustrate that, like other medical labels, ‘palliative’ opens doors to services unavailable to unlabelled patients, ‘determining who has access to what resources [and] under whose jurisdiction the management of the condition will fall’.8
Given that a ‘palliative’ label serves as a first-class ticket to optimal care, it is troubling that such tickets are not equitably offered to everyone who ends up dying within a year. Many more people are placed on practices’ palliative care registers before dying of cancer than before non-cancer deaths.9 This discrepancy helps explain the inequity of community end-of-life care provision sometimes described as ‘disadvantaged dying’.10 Older people are one big group disadvantaged in this way. One reason for this is pragmatic: in an older person with some combination of frailty, dementia, and multiple chronic conditions, the uncertain trajectory of decline makes identifying the approaching end of life harder than it is in someone whose decline is due to a single condition such as cancer.11 There is a second reason for the discrepancy between different groups’ likelihood of getting onto a palliative care register: it concerns the shared decision-making conversations that should be at the heart of clinicians’ identification and registration processes.
Can we offer palliative care without focusing on death?
As well as helping practices offer their ‘palliative’ patients holistic person-centred care, easy access, and continuity, the register prompts GPs to consider interventions that require them to engage patients and their carers in delicate conversations. These interventions include discussing and documenting the patient’s preferences regarding their future care, setting up anticipatory prescribing when appropriate, liaising with community nurses, and deprescribing. To offer them, the GP has first to suggest shifting the main goal-posts of care from future cure to present wellbeing. Although one can do this without mentioning death, the terms ‘palliative’ (a word widely associated with imminent death) and ‘end of life’ make it almost impossible to do so. As Leach et al report, these terms may be perceived as stigmatising — damaging to the person’s self-image or identity.6
This identity damage is particularly likely to affect frail older people; asked to talk about themselves, older people generally focus on their resilience despite the challenges of age-related decline, managing life day-to-day rather than thinking about dying.12,13 In one study,9 GPs describe feeling reluctant to discuss palliative care with frail older people for fear of ‘destroying hope’, and suggest that this helps explain such people’s under-representation on their practices’ palliative care registers. To achieve a shared understanding of the situation — the indispensable foundation of good palliative care — we may need to change the words we use when talking about it.
Is expanding palliative care registers the way to go?
As Leach et al found,6 people are likely to welcome being told they have palliative care needs if they actually get more holistic and personalised care as a result. So it may seem obvious that we should aim to create more equitable and less stigmatising palliative care registers, expanding them to include the growing number of people who end up dying with, and essentially of, old age. But with NHS primary care teams and community nurses already fully occupied, opportunity costs must be considered. A more comprehensive palliative care register could theoretically save money by, for instance, deprescribing to leave people only taking medication that has current benefits, reducing the monitoring that many risk-reducing interventions necessitate, and using previously recorded preferences about the ceiling of care to help families and clinicians agree to avoid hospital admission. The trouble is, would such savings translate into more community healthcare professionals?
Having palliative care needs is not a binary attribute: when it comes to needing timely, person-centred, compassionate care, everyone sits on a spectrum that runs from the healthy person with a sprained ankle to the person with disseminated cancer or severe frailty. A growing number of older people sit in the middle of this spectrum, and are liable to be poorly served by any system that simply widens the eligibility criteria for getting the first-class ticket that a ‘palliative’ label can constitute, without providing additional carriages for their journey and ensuring that those who die of old age are happy to travel in them.
Conclusion
We do not call for first-class palliative care to be levelled down — nobody would want to see its current recipients receive care that is less holistic, timely, or person-centred — but it is time for clinicians, commissioners, and policymakers to think beyond the widespread assumption that simply identifying more people as ‘probably in the last year of life’ will level up care for all those extra people. The dual challenge is to find language for talking with older people about shifting the goals of their care without damaging their self-image, and to create and fund a system that retains the essential features of first-class care while distributing these benefits more equitably.
Acknowledgments
These ideas draw on 2 years of very helpful discussions with our colleagues Sarah Hoare, Sarah Hopkins, and Mike Kelly.
Notes
Provenance
Commissioned; externally peer reviewed.
Competing interests
The authors have declared no competing interests.
- © British Journal of General Practice 2024
