INTRODUCTION
Palliative care and end-of-life care initiatives were initially developed within the context of cancer care 1, before expanding to encompass all life-threatening illnesses 2. Current end-of-life care policies aim to provide comprehensive support for ‘every person nearing the end of their life’ 3. This commitment broadens the scope of palliative care to include the increasing number of older adults who die with frailty 5 or multiple age-related conditions [6](#b6], rather than a single, terminal illness. However, delivering effective end-of-life care to this demographic presents unique challenges, contributing to a recognized ‘gap in service’ 7 and what is termed ‘disadvantaged dying’ 7–9.
There is a growing policy emphasis on delivering end-of-life care within community settings 10. Identifying individuals who would benefit from such care is a critical aspect of policy and clinical guidelines. This process, and the resulting end-of-life ‘diagnosis’, is akin to other clinical diagnoses, guiding treatment choices, predicting outcomes, and facilitating access to appropriate services 11. The increasing importance of community-based end-of-life care, and the central role of end-of-life diagnosis are highlighted in recent revisions to healthcare contracts 12. These revisions incentivize the creation of palliative care registers and emphasize ‘identifying patients in need of end-of-life care’ as the primary step in delivering high-quality care at the end of life. Research also advocates for General Practitioners (GPs) to expand and improve palliative care provisions 13, 14, stressing the need for earlier and more widespread diagnosis. This emphasis is reflected in frameworks like the Gold Standard Framework 15 and the Royal College of General Practitioner’s Daffodil Standards 16.
However, applying these diagnosis-centric guidelines is more complex for individuals with multimorbidity and frailty compared to those with cancer or organ failure, due to differing patterns of health decline 17. While all end-of-life diagnoses involve some uncertainty, this is particularly pronounced in older adults experiencing gradual, age-related health deterioration in their final months 9, [18](#b18], 19. Consequently, this population is more likely to die without receiving a formal end-of-life diagnosis compared to, for example, cancer patients 14. This study aimed to investigate the significance of this diagnostic disparity and explore how the presence or absence of an end-of-life diagnosis influences access to care, drawing on the experiences of community healthcare providers caring for frail older people nearing the end of life.
METHODOLOGY
This study employed qualitative interviews with healthcare professionals involved in community-based end-of-life care. Participants were recruited from various settings within a single clinical commissioning group in England, including out-of-hours (OOH) community nursing services, nursing homes, and community hospitals. All participant names have been anonymized, and each quote is attributed to their workplace and a pseudonym.
Data were collected through semi-structured interviews conducted in 2018 by one author. Nine individual interviews and three small group interviews were conducted at participants’ workplaces, lasting approximately 45 minutes each. All interviews were audio-recorded and professionally transcribed. Participants were asked about their experiences in providing end-of-life care to frail older adults. The interviewer deliberately avoided defining terms like ‘frail’ or ‘dementia’, focusing instead on how participants used these terms in their narratives.
Thematic analysis with constant comparison 20 was used to analyze the interview data. The iterative analytic approach allowed for a focus on ‘end-of-life diagnosis’ as a key emerging theme during initial data coding.
FINDINGS
The study findings address two central questions related to end-of-life diagnosis: who is likely to receive this diagnosis, and how does this diagnosis impact the provision of care?
Disparities in End-of-Life Diagnosis
Establishing an end-of-life diagnosis is fundamentally tied to prognostic assessment. However, participants revealed significant variations in their understanding of ‘end of life’:
‘End of life, are we looking at, [Hospice Charity 2] often talk of end of life as the last week, seven days, but if you go to the Gold Standard Framework it’s the last year. So I would identify as the last year, is that okay? ’
(Fiona, end-of-life community facilitator)
‘Elderly, frail at end of life, that could be anything from a few weeks up to 18–24 months.’
(Hattie, community nurse, OOH)
‘These are end-of-life care beds […] so we’re looking to take people in the last two to three weeks of their life.’
(Bev, hospice)
These diverse definitions significantly influence who is considered for an end-of-life diagnosis. Furthermore, a preliminary step involves clinicians considering whether an individual is the ‘right kind of person’ for such a diagnosis. The study revealed that participants often struggled to readily consider frail older adults, declining due to age-related conditions, as candidates for end-of-life diagnosis. The interviewer sometimes had to actively redirect participants back to the focus on end-of-life care for this population, as illustrated in the following excerpt:
‘When you say frail and elderly, I think I’m thinking of frail and elderly with cancer, but you’re, I don’t think you’re … not particularly, it’s not that … it’s just frail elderly end of life.’
(Jen, community nurse, OOH)
Jen’s initial inclination to discuss cancer patients and her subsequent hesitation reveal underlying assumptions about which conditions warrant an end-of-life diagnosis. Other participants explicitly acknowledged these assumptions:
‘Everybody looks at end of life as being […] cancer-driven or long-term condition driven, I don’t see that the elderly or frail actually come into that remit.’
(Hattie, community nurse, OOH)
‘We wouldn’t have a kind of unexpected, a frail elderly come in [to a ‘palliative care’ bed]. ’
(Kath, community hospital)
Conversely, some participants described strategies to facilitate an end-of-life diagnosis for frail older patients, enabling them to access needed services:
‘You have to pigeon-hole them into whatever services would be available.’
(Gill, community nurse, OOH)
May further elaborated on this ‘pigeon-holing’ process, describing how a diagnosis is constructed for a frail, elderly patient whose health deteriorates in a ‘rehab’ bed:
‘The doctor will find a diagnosis because at 98 you’re going to find something that’s going to kill you very soon, and they will say it’s the heart failure and then they become palliative […] it’s just knowing what to put on that piece of paper to allow it to happen.’
(May, community hospital)
May’s account challenges the notion of end-of-life diagnosis as a purely objective, rule-based process separate from clinical care. Instead, ‘finding a diagnosis’ emerges as an integrated part of the care process itself. This suggests a complex interplay between diagnostic practices and care delivery, rather than a simple linear model where diagnosis neatly precedes and dictates care. Focusing on care needs first, and considering diagnosis as secondary, could improve care for patients like the one May describes:
‘I think it still hits us by surprise when it comes to the end […] somebody in the community who hasn’t got a diagnosis but you know they’re reaching the end of their life […] because they’re, they’re old, it’s the only reason. Well you know they’ve got a bit of this and a bit of that […] we used to call it acopia, they can’t call it “not coping” anymore.’
(May, community hospital)
Simply identifying a need for additional care is insufficient; an end-of-life diagnosis is often a prerequisite to accessing this care.
Impact of End-of-Life Diagnosis on Care Provision
Participants described three key ways an end-of-life diagnosis shapes care provision: enabling access to services, prioritizing diagnosed patients, and facilitating advance care planning. The visibility of these roles varied across care settings.
Access to Services
The gatekeeping function of diagnosis was evident in accounts from providers both within and outside service ‘gates’. For example, May expressed concern about ‘opening the floodgates’ if her community hospital relaxed the requirement for an end-of-life diagnosis for palliative care beds. Kath, from another community hospital, acknowledged the need to increase capacity to accommodate frail older adults without such diagnoses:
‘One solution is […] that we have more units like this […] you’d fill them up very quickly, that’s the only thing.’
(Kath, community hospital)
Hospice staff were even more direct, dismissing the feasibility of broadening admission criteria:
‘There would never be enough beds in the hospice environment to accommodate the frail elderly.’
(Group1)
Gill, working in community OOH nursing, echoed this experience, noting the historical limitations of hospice services in serving frail elderly populations:
‘ [At] first […] it would only look after patients with cancer diagnoses, then it changed to any end-of-life condition, but it didn’t cover elderly, frail and I don’t know whether it does now […] there isn’t a specific service for those.’
(Gill, community nurse, OOH)
These accounts consistently indicate that older adults without an end-of-life diagnosis face disadvantages in accessing community in-patient end-of-life care. Jen, an OOH community nurse, summarized this disparity starkly:
‘A cancer diagnosis […] opens up so many doors for people, regardless of your age […] if you’re frail and elderly and just dying […] what have you got? […] It’s a lot more closed doors.’
(Jen, community nurse, OOH)
Prioritization of Care
Community OOH nurses, who must manage fluctuating and unpredictable patient volumes, described prioritizing patients based on diagnosis. Unlike in-patient settings with admission ‘floodgates’, OOH services must manage demand through prioritization. Jen explained:
‘You never know, one night we might have one patient, one night we might have your fourteen.’
(Jen, community nurse, OOH)
While OOH nurses affirmed providing good care, accounts revealed a more complex reality. Hattie described the prioritization process:
‘I’d say 90% of the time we could […] Priorities will be admission avoidance, end of life and catheter problems […] but there are a lot of calls that we do […] re-triage […] and say, “I’m sorry, we can’t get to you”.’
(Hattie, community nurse, OOH)
The slight contradiction between ‘90%’ of visits and ‘a lot of calls’ declined highlights the strain and the inherent disadvantage for those not prioritized. Jen emphasized the prioritization of end-of-life care:
‘I think the beauty of out-of-hours, even though we are completely stretched beyond capacity, is that we absolutely prioritize end-of-life care.’
(Jen, community nurse, OOH)
While prioritizing end-of-life care aligns with guidelines, Hattie’s account reveals that in resource-limited settings, this prioritization inevitably disadvantages those not categorized as end-of-life.
Advance Care Planning
Advance care planning, crucial for aligning care with patient preferences, is often cited as a rationale for end-of-life diagnosis 15. Interestingly, nursing home staff were the most vocal about advance care planning, while it was less emphasized in other settings. Iris, a nursing home manager, highlighted initiating these discussions early:
‘I think end-of-life care is very, very important, you know, we start the discussion, you know, soon after somebody come to a home.’
(Iris, nursing home)
Discussions in nursing homes covered resuscitation preferences and hospital admission, involving family and documented in care plans. While implicitly acknowledging residents were nearing end-of-life, Iris referred to ‘an end-of-life care plan’ as a standard outcome. Liz, from another nursing home, also mentioned routine family meetings including ‘discuss end-of-life’, though acknowledging some reluctance from individuals to engage. Despite this reluctance, advance care planning was presented as a routine and expected practice in nursing homes.
In contrast, outside nursing homes, advance care planning was less prominent. Hattie, from OOH nursing, framed planning as primarily for the clinical team, with patients and families in a more passive role:
‘I believe that there should be processes, I’m not saying they’ve got to be 100% stuck to but if there’s a clear line of what happens as the patient is deemed end of life or terminal […] the box has been ticked, preferred place of care, got Just in Case meds, we’ve got the next of kin […] I think that’s crucial. And we haven’t got it yet.’
(Hattie, community nurse, OOH)
Other participants mentioned advance care planning only when prompted. Jen expressed less enthusiasm and raised ethical concerns:
‘Er … yes, yes, I don’t think [advance care planning is] going to hurt […] The only thing I’m thinking of though is people never know what they’re planning for.’
(Jen, community nurse OOH)
Paradoxically, in nursing homes, where advance care planning was most emphasized, end-of-life diagnoses were not explicitly mentioned. This suggests that admission to a nursing home itself might act as a tacit marker for end-of-life, prompting proactive planning. Iris’s comment about the limited impact of specific end-of-life care guidelines on ‘basic care’ further supports this:
‘Whatever policy comes and goes […] the basic care is the same […] providing holistic care, […] making sure that the person is pain-free […] clean, comfortable, […] peaceful […] that’s basic care […] ’
(Iris, nursing home)
Iris’s account suggests that good ‘basic care’ is universally provided in nursing homes, irrespective of an end-of-life diagnosis. However, in other settings, the study indicates that providers prioritize patients with an end-of-life diagnosis, potentially disadvantaging those without.
DISCUSSION
Key Findings
This study, based on interviews with community end-of-life care providers, explored the role of end-of-life diagnosis in shaping care. It confirms the widely held view that such a diagnosis facilitates better care, aiding in planning and prioritization. An end-of-life diagnosis also serves as a ‘key’ to unlock additional resources and services.
However, the study revealed a critical disparity across care settings, particularly regarding which patient populations are likely to receive an end-of-life diagnosis. Providers in NHS-funded settings highlighted the challenges of diagnosing frail older adults without a singular life-limiting condition. This diagnostic difficulty was seen as a barrier to optimal community care. Some participants described ‘pigeon-holing’ strategies to overcome this barrier. Conversely, in private nursing homes, diagnostic and prognostic concerns were less apparent. Admission to a nursing home seemed to implicitly signal end-of-life proximity, facilitating good end-of-life care for residents.
A significant finding from community nurses in reactive OOH services was the necessity of prioritization. To manage unpredictable demands, they prioritized patients with end-of-life diagnoses, potentially disadvantaging others, including frail older adults without such a diagnosis. This is an unintended consequence of diagnosis-centric policies.
Limitations and Strengths
The study’s strength lies in its focus on provider perspectives and its use of the sociology of diagnosis to interpret these perspectives. Recruiting participants from diverse care settings enabled valuable comparisons within the data and with existing literature.
However, the variety of settings also presents a limitation to the generalizability of comparisons. Differing definitions of ‘end-of-life’ across settings further complicate generalizing about adequate end-of-life care, as needs in the last days may differ from those in the last months.
Further limitations include the small sample size, snowball sampling, which might have underrepresented more critical perspectives, and potential anonymity concerns due to workplace interviews within a limited geographical area.
Comparison to Existing Research
Existing research has long documented that older adults are less likely to receive adequate end-of-life care at home or in hospices, and are more likely to die in hospitals 22–24. Studies have shown hospital admissions in the last days of life are often driven by a lack of community support and palliative care access 25. This study reinforces these challenges. Resource-constrained community settings prioritize patients with an end-of-life diagnosis, inadvertently disadvantaging frail older individuals less likely to receive such a diagnosis 13, 14. This unintended consequence is increasingly relevant as the proportion of deaths among frail older people grows, prompting calls for a shift in thinking about end-of-life care to meet the needs of an aging population 26.
Current policy and research efforts often focus on increasing end-of-life diagnoses, particularly for frail older adults, recognizing frailty as a life-limiting condition 27. However, the study highlights that end-of-life diagnosis powerfully determines resource access 29, especially in resource-scarce environments. Similar to study participants, GPs in other research express concerns about the workload implications of expanding palliative care registers to include frail elderly patients 13, 23. Beyond resources, concerns exist about the implications of an end-of-life identity. Harrison et al. 14 note GP reluctance to ‘talk to patients too early’. Such conversations necessitate offering an end-of-life diagnosis, which both patients and practitioners may be hesitant to embrace for frail older adults. Pocock et al. 23 reported GPs struggling to place patients with non-malignant conditions on palliative care registers due to a perceived lack of ‘intellectual link’ between these patients and end-of-life care.
Thomas and Gray 26 frame end-of-life diagnosis positively, emphasizing its role in enabling proactive, less crisis-driven care. Crucially, they also advocate for increased investment in community services, including district nurses and night sitters. The study’s finding that district nurses feel ‘stretched beyond capacity’ strongly supports this call for increased resources.
This study underscores an existing inequity in service provision 30, sometimes specifically linked to dementia 31 or broader ageism 8. Covinsky et al. 19 connect this inequity to the central role of end-of-life diagnosis, arguing that systems geared towards patients with clear trajectories of impending death are poorly suited to frail older adults. Over a decade later, Lloyd et al. 32 reiterate that the current palliative care model is problematic for frail older people.
This research suggests that to address these issues, the palliative care model needs to reconsider its reliance on end-of-life diagnosis.
Implications for Clinical Practice and Policy
The findings indicate that while end-of-life diagnosis benefits recipients as intended by policymakers, it also creates an unintended consequence: potentially privileging those with single life-limiting conditions over frail older adults with age-related multimorbidity. Mitigating this inequity requires re-evaluating the ‘end-of-life’ lens for supporting frail older adults and their families. Specifically, it is crucial to question the value of differentiating between crises that are truly end-of-life events versus temporary, reversible episodes, given the prognostic uncertainty in this population.
It is recommended that practitioners and policymakers shift away from an over-reliance on end-of-life diagnosis and prioritize understanding and addressing the individual needs of each frail older person. This shift would foster a more nuanced approach to discussions about care priorities, integrating these conversations into the broader context of ongoing care practices for older adults. For policymakers and commissioners, this reframing clarifies the challenge of delivering equitable end-of-life care to all population groups.
Acknowledgments
The authors thank the participants and collaborators involved in the study, especially Angela Harper for administrative support and Sam Barclay for transcript anonymization.
Funding
This research was funded by the Marie Curie Design to Care programme (grant number: RG87570). Sarah Hoare and Stephen Barclay were supported by the Marie Curie grant.
Ethical Approval
The study received ethical approval from the NHS Health Research Authority (reference number: 18/HRA/0409) and the University of Cambridge Psychology Research Ethics Committee (reference number: PRE.2017.055). All participants provided informed consent.
Provenance
Freely submitted; externally peer reviewed.
Competing Interests
The authors declare no competing interests.
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