Dying comfortably in very old age with or without dementia in different care settings – a representative “older old” population study

Increasing longevity means more people are dying at increasingly older ages, often with multiple co-morbidities complicating their end-of-life care [1, 2]. In the UK, for example, over just the last quarter century the proportion of deaths occurring at the age of 85 or older has risen steeply from around a fifth in 1990 to almost half current annual deaths [3]. Dementia prevalence rises with proximity to death, over and above age-associated increases [4]. Multiple symptoms are common amongst older people with dementia as they approach the end of life and poor symptom control may increase distress and worsen quality of life [5]. Past research in both hospital and long-term care settings has highlighted concerns that failure to recognise dementia as a terminal condition and communication breakdown may both contribute to poor symptom management [5, 6]. Variation in levels of symptom control for all older people dying in different care settings, with or without dementia, is an important concern. [7, 8] Comfort and effective symptom management feature high in patients’ [9‐13], relatives’ [14, 15] and professionals’ [16] perceptions concerning what factors are important for a good death. In a study of advance care planning amongst older adults 92% of patients prioritised comfort [17].

Most people taking part in surveys about their future wishes [18‐20] or reporting what they believe their relatives wanted [7, 21] state a preference to die at home, if expressed at all. These widely quoted findings may not be representative [22], nor reflect how views can vary with proximity to death [20, 23, 24] and personal circumstances [25, 26]. Although policy encourages support for patients to die wherever they would prefer [27, 28], dying at home is a more measurable outcome than death in preferred place of care so is often taken as a surrogate indicator of end-of-life care supporting choice [29, 30]. However, a minority of the oldest old people die in their own homes [8, 31‐33] and indeed research shows that many older people anticipate preferring to be cared for elsewhere in the final illness [18, 19, 25, 26, 34]. In the UK fewer older people die in hospices or receive specialist palliative care at home than younger age-groups [35‐38] and the trend for older deaths is gradually moving away from death in hospital towards long-term care facilities [39, 40].

For older people in many countries care transitions are common during the last weeks [41], months [42, 43] or year [31] of life. Those with cognitive impairment are most likely to live in and subsequently die in care homes [44, 45], while those with no or mild cognitive impairment are more likely to live at home in the community and then be admitted into acute facilities during the terminal phase [32]. As well as cognitive status, other factors have been reported to influence transitions such as gender, affluence of area and diagnosis [39, 46, 47]. In studies that analysed causes of transitions a common theme was that uncertain diagnosis, less skilled members of staff, communication difficulties and needing to access out of hours services made hospital admission more likely [43, 48‐50].

Transitions towards the end of life can be burdensome and may not be associated with symptom improvement nor with better quality end-of-life care. They may result in exclusion of the main carer and a disjointed experience of the health service [51], even leading to adverse events in drug prescription [52]. Admission to hospital at the end of life is also associated with greater cost [53‐55]: UK health service spending exceeding £750 m a year on emergency admissions ending in death [27], and evidence suggests hospitalisation for patients with severe dementia is not cost effective [56].

There are several gaps in the literature concerning comfort at the end of life amongst older old people. Although there is extensive research concerning their preferred place of care, few studies have compared end-of-life care across different settings and there is little evidence to support the commonly-held view that transitions have a negative effect on quality of end-of-life care. Few studies have been able to link individual-level data including dementia or cognitive status prospectively assessed before death with information on where and how dying individuals were cared for. This study has achieved this, examining in a population-representative sample the associations between factors potentially related to reported comfort during the final illness of very old people – in particular, their cognitive and physical disability, the setting where they were cared for in their final illness, and where they died.

Analyses of data from a prospective population-based study of ageing in which almost all respondents have died, the Cambridge City over-75s Cohort (CC75C) study [57], linked i) in vivo dementia diagnoses and cognitive assessments with ii) certified place of death records and iii) data from interviews with bereaved relatives or other closely involved carers (“informants”) for the maximum sub-sample with all three data sources (n = 180). The CC75C study [58] has followed up 2166 men and women aged at least 75 at baseline (1985–87) enrolled through general practices (95% response rate) in Cambridge, UK, with surveys every few years until death (all deceased by December 2015). The study remained highly representative of the older old population, with mortality the main reason for attrition.

Death not occurring until the tenth decade or later is becoming increasingly common, but dying in advanced old age is still relatively rarely described. This population study provides much-needed evidence to inform service planning to support very old people to die comfortably. Nearly half this representative sample of very old people, who died at a median age of 91, experienced at least three symptoms during their final illness. Pain and distress were the most commonly reported, but no clear pattern of symptom clusters emerged. There was some uncertainty about which symptoms were present, particularly depression. Even the largest single symptom group, unconsciousness, was small, suggesting fewer than 10% of the very old simply ‘slip away’. Of the treatable symptoms reported, pain was addressed in the majority affected, though effectively for only half these, but only a fraction of those with depression were treated. Nonetheless, despite high symptom prevalence when dying, death was described as comfortable for the majority. The association found between comfort and effective treatment, non-significant within the small sub-sample reported to have had symptoms addressed, may partially explain informants describing many with multiple symptoms as comfortable. Comfort was significantly associated with being cared for in a long term care facility, dying in a long term care facility and also with dying at the individual’s usual address. Despite the high proportions of the most cognitively impaired in all these categories, the association between dementia status and reported comfort at the end of life was not significant. Of the majority still living at home when last interviewed, those receiving support more than once a week were more likely to move before they died and less likely to be described as dying comfortably.

A major strength of this study is its combination of prospectively collected data from a representative population-based cohort with retrospective informant interviews and death certificate data, allowing individual-level examination of aspects of end-of-life care experienced by very old people. The CC75C study is one of the very few longstanding population cohorts with participants of such advanced age followed-up to death and data including cognitive assessments from the last year of life. Our sample is sizeable for end-of-life research with very old people, but our focus on deaths in advanced old age inevitably means it is nonetheless too small to fully examine all potentially relevant factors. The hypotheses generated by some of these findings may need testing by combining studies in order to gain sufficient power in future research.

The very nature of such longitudinal research also carries limitations, such as the inevitable absence of more recent measurement approaches [65] and the extended data-collection period. It is possible that experience of death is changing over time, though one study that explored this (in a younger old age-range) found minimal 10-year change in home-to-hospital end-of-life transfers and proportions of deaths at home [66]. Information explaining reasons for hospitalisation before death is limited. However, few studies have been able to look at a whole “older old” population and the CC75C data provide rare insight. Limitations of proxy data from bereaved relatives are well-recognised [67, 68] and our informant interview post-bereavement timings varied. Others have explored stability of family informants’ responses over time [69, 70] and our analyses found no impact on findings of these interval variations. A further limitation with potentially more relevance to our findings is the fact that, although drawn from a representative population-based cohort, our sample inevitably did not include those for whom there was no informant to give a retrospective interview. Assessing potential missing data impacts, we confirmed the analysis sample broadly reflected the full representative cohort.

Other large population-based studies find prevalences of dementia and cognitive impairment at the end of life at advanced age in line with this study, though most reporting advanced age prevalence [71‐74] are not specifically from populations near death [2, 4]. As expected, we found higher disability levels than reported from other “older old” but not end-of-life cohorts [75, 76] and from studies of older people nearing death but including a younger old age range [77, 78]. Other population-wide research provides broadly similar figures for the proportion of those dying in different settings, with general concordance that those with no cognitive impairment were most likely to live at home and then move to hospital whereas those with moderate-severe dementia were most likely to live and die in a care home [39, 44, 47, 66, 79]. Other UK research confirms transitions to hospital before death are usually from home and least likely from nursing homes [33, 43].

We found higher comfort ratings in long-term care; the large UK VOICES study also found that care homes and hospices were rated better than home for non-cancer deaths, [7] and the Swedish NONA study found similar satisfaction with care amongst relatives of over-90-year-olds dying in care homes [80]. We recognise that an informant’s report of a comfortable death is a subjective measure that may be coloured by many factors and reported comfort in care homes may reflect family hopes or even staff defensiveness, but these conjectures are beyond what the data can elucidate. The non-significant association of moderate-severe dementia with reported comfort is somewhat supported by the VOICES study which found that relatives of people who died with dementia tended to rate the overall level of care better than ratings for those dying without dementia, though they were less likely to rate care excellent. [7] Authors of another study which found it paradoxical that end-of-life care was improved when the person had dementia hypothesised this was possibly due to increased attention levels [81].

The symptom burden is also similar to that found in other research, with pain and distress being common symptoms found in hospitals, care homes and at home in other studies [82‐86], and inadequate symptom relief also reported as common [86]. There is discordance in the literature about the impact of symptoms on quality of dying with some finding their presence has no effect [84]; we also found no significant association between symptom presence and comfort.

It is heartening that these very old people, including those with dementia, were described as being comfortable at the end of life. However, the high symptom prevalence, some reportedly inadequately addressed, reinforces calls to improve end-of-life care from a plethora of recent reports [87‐89]. That symptoms were common is relevant to current attention to the design and delivery of palliative care [90, 91], particularly the low proportion of depression treated. Mental health at the end of life for the very old needs to be assessed and addressed, likewise the adequacy of pain relief offered, especially considering the inter-play of dementia, depression and distress.

It is important to note the strong inter-relationship of many variables we considered. People with high support needs at home are least likely to ‘stay in place’. People with dementia at advanced ages are more likely to live in care homes and experience fewer end-of-life transitions to other settings. From a policy perspective the finding that long-term care settings are associated with dying comfortably supports recent evidence that is starting to encourage re-thinking the focus on dying at home [20, 22, 25, 26, 30, 92], particularly for this very old age group. Cost-savings arguments based on cancer care service models may be inappropriate to the very different palliative care context for frail older people [53, 55, 93], who cannot always be adequately supported at home [94‐97]. There is growing recognition that good care homes increasingly play a role akin to hospices for the frail elderly [98, 99], but common public perceptions [100] tend more to reflect concerns over the wide variability in standards and the challenges many homes face in providing end-of-life care [101‐104]. Recent research confirms this is no less a challenge at home [33, 48, 51, 105‐110], the setting where the fewest very old people die, though our findings suggest home can be a comfortable place of death provided circumstances support staying there. However, the number of older old people dying in acute hospitals, where we found the odds of dying comfortably were lowest, makes this another priority area for improving end-of-life care [111‐119].

Informants sometimes found it difficult to say when the “final illness” began, even in retrospect: this is not unexpected, given many participants’ health had been fragile long before death [120]. In all settings, recognising at what point along a frailty trajectory someone is dying is a challenge [49, 80, 104, 121‐123] that sometimes hinders advance care planning (ACP). Older people and their families’ choices need to be fully informed through realistic discussion anticipating deterioration, something many, but not all, very old people would welcome [105, 124‐127]. Early and more widespread discussion of place of care and death, using clear language and frank information could be helpful in reducing the discomfort in talking about death, alleviating some distress and opening communication channels for better symptom control. Transfer to a preferred place of care should be facilitated whenever possible, but all too commonly a patient is admitted to hospital without those concerned having considered where they can be best cared for, or would wish to die. If social/community care use is predictive of end-of-life comfort, as found in our study, this has implications that can guide planning future management of considerable care needs. However, although ACP may reduce unwanted transitions, including hospital admissions [17, 128], even well-informed choices discussed in advance are no guarantee when services cannot cope with changed circumstances [129]. This very unpredictability underlies some reluctance to make plans [105, 124, 127] and poses big questions for future research and practice: how care for the very old and frail at the end of their lives can be responsive to their preference and deliver the best possible support in all settings for dying comfortably [130].

This study’s findings are consistent with reports that care homes can provide care akin to hospice for the very old and support an approach of supporting residents to stay in their care home or own home if possible. The reported high prevalence of multiple symptoms, but less frequently reported symptom control, can inform policy and training to improve older old people’s end-of-life care in all settings.