These data speak to two related questions concerning end-of-life diagnosis. First, they help characterise the kinds of people likely to receive an end-of-life diagnosis. Second, they demonstrate the power of such a diagnosis to shape care provision.
Who gets an end-of-life diagnosis, and who does not?
Establishing an end-of-life diagnosis centres on estimating prognosis. In addition to the inherent uncertainty of these processes, there is wide variation in the way participants define the 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)
Varied as these definitions are, they clearly play a big part in determining who gets an end-of-life diagnosis. But before choosing a definition and attempting to fit it to an individual, clinicians have to think about that individual as the right kind of person to consider for end-of-life diagnosis. This study’s findings suggest that this preliminary step is at the root of an important difference: in some of these data it can be seen that the interviewer has to work hard to get participants to focus on end-of-life care for people dying of age-related general decline. This can be seen in the next excerpt, where the participant replies quite hesitantly to a reminder about the interview focus, a reminder given after a long story about a very old man dying of cancer:
‘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)
In her initial choice of story and subsequent hesitation, Jen indicates tacit assumptions about the kinds of people and medical conditions that lead to an end-oflife diagnosis. Other participants reference these assumptions explicitly:
‘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)
Some participants, however, describe ways to make the diagnostic process work to help a frail older patient, providing them with an end-of-life diagnosis:
‘You have to pigeon-hole them into whatever services would be available.’
(Gill, community nurse, OOH)
In the next excerpt, May explains how this pigeon-holing works for an old, frail patient whose health declines after admission to a ‘rehab’ bed in her unit:
‘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 helpfully disrupts the idea that making an end-of-life diagnosis is a fact-based, rule-governed process, carried on outside the complex collection of practices through which clinicians care for patients approaching the end of their lives. Instead, ‘find [ing] a diagnosis’ appears as an integral constituent of that web of care practices. This model of complex articulations between practices offers a better fit with this study’s data than models that portray end-of-life diagnosis leading to end-of-life care in a tidy linear relationship. By focusing guidelines and practice primarily on care needs, and relegating diagnosis to a secondary role, care might be improved for the kind of person May portrays here:
‘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)
Thus it is not enough simply to say that the patient needs additional care; to get this, they first need an end-of-life diagnosis. Next, the way this diagnosis affects care provision is considered.
What effects does an end-of-life diagnosis have on care provision?
The participants portray an end-of-life diagnosis in three roles: allowing access to additional services; giving the diagnosed patient priority over other patients requesting care; and helping trigger and facilitate advance care planning. Each of these roles is more visible in some care settings than others.
Enabling access
The gatekeeping role of a diagnosis is visible in the accounts of participants working both inside and outside the ‘gates’. For instance, when asked what would happen if her community hospital relaxed its rule that palliative care beds are reserved for people with an end-of-life diagnosis, May replies that she would ‘be afraid to open the floodgates’. Kath, who works at a different community hospital, does offer a suggestion to help frail older people who do not have an end-of-life diagnosis, tacitly acknowledging that they would benefit if they could get in:
‘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)
The group of staff interviewed together at a hospice go further, dismissing the idea of broadening their admission criteria:
‘There would never be enough beds in the hospice environment to accommodate the frail elderly.’
(Group1)
Gill mirrors this statement; speaking from outside the floodgates, in the context of community OOH nursing, she describes her experience of the local hospice’s provision over several years:
‘ [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 data all indicate that older people without an end-of-life diagnosis are disadvantaged as regards access to community in-patient care close to the end of life. Another OOH community nurse spells this out:
‘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)
Prioritisation
A second way in which older people may be disadvantaged is surfaced by community OOH nurses’ accounts of prioritising their work. They are the only group of participants to talk about prioritisation, presumably because, unlike those working in community in-patient settings, the OOH service has no ‘ floodgates’ to control patient numbers. As Jen explains:
‘You never know, one night we might have one patient, one night we might have your fourteen.’
(Jen, community nurse, OOH)
Like other participants, the OOH nurses explicitly state that they provide good care, but some of the data suggest a more nuanced picture. For instance, this is Hattie’s reply when asked whether she can visit all the patients she is asked to see:
‘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)
This statement, with its slightly uneasy disparity between ‘90%’ visited and ‘a lot of calls’ declined, complicates the positive framing of prioritisation visible in this next excerpt:
‘I think the beauty of out-of-hours, even though we are completely stretched beyond capacity, is that we absolutely prioritise end-of-life care.’
(Jen, community nurse, OOH)
By prioritising end-of-life care, Jen is doing exactly what healthcare guidelines recommend, but Hattie’s account shows that in resource-constrained settings this recommendation inevitably disadvantages people who are not prioritised.
Advance care planning
The importance of establishing the patient’s preferences regarding their end-of-life care (a process known as advance care planning) features prominently in guidance such as the Gold Standards Framework,15 where it is cited as a reason to make an end-of-life diagnosis. Looking at the way providers in different care settings talked about advance care planning, an interesting difference was visible: such planning is seldom mentioned in most settings, but it is foregrounded by participants working in nursing homes. For example, at the start of her interview, Iris responds to a general invitation to talk about end-of-life care by mentioning ‘start [ing] the discussion’ in her first sentence:
‘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)
Iris goes on to explain that the topics discussed include preferences about resuscitation and hospital admission; the new resident’s family is usually involved in these discussions, which are ‘documented and kept in our folder’. Implicitly, all those involved accept that the resident is approaching the end of their life, and Iris refers to ‘an end-of-life care plan’ as the key product of the discussion process. Liz, who works at a different nursing home, also talks about regular meetings with every resident’s family, at which ‘part of what we do [...] is discuss end-of-life’, although she and Iris both volunteer that some people are reluctant to engage with these discussions. A normative flavour is visible in this presentation of advance care planning as ‘part of what we do’ despite people’s reluctance, and in Iris’ comment that ‘some people they tend to delay the process [of discussing end-of-life care] ’.
Despite these hints that advance care planning is done routinely, not just offered, the nursing home managers emphasise that it is done for the patient’s benefit, helping them achieve ‘the death that they want [...] a nice death’. Outside the nursing homes, in contrast, Hattie presents planning as something done primarily by and for the clinical team, with patients and relatives implicitly relegated to a box-ticking 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 do not mention advance care planning except when prompted by the interviewer. Jen’s response to such a prompt, below, is less enthusiastic than Hattie’s, perhaps because she indicates awareness of an ethical problem raised by advance planning, rather than focusing her response on efficient care provision:
‘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)
Although guidelines state an end-of-life diagnosis enables advance care planning, in the setting where planning featured most prominently, nursing homes, there was never a reference to residents having an end-of-life diagnosis. This paradox can be explained by a tacit assumption: moving into a nursing home constitutes a surrogate marker that makes it appropriate to begin advance care planning, an explanation supported by the next excerpt. Iris’ nursing home recently adopted the Gold Standard Framework, instead of a previous guideline, but she implies that guidelines about end-of-life care have only a limited effect on her care practices:
‘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)
Thus good ‘basic care’ is what all residents need, and Iris’ account suggests that everyone in her nursing home receives this good care; in this setting, an end-of-life diagnosis is not needed to ‘open doors’. In other settings, however, the study’s findings suggest that care providers privilege and prioritise patients identified as ‘end-of-life’, inadvertently disadvantaging people who die without an end-of-life diagnosis.