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

Abstract

BackgroundComfort is frequently ranked important for a good death. Although rising numbers of people are dying in very old age, many with dementia, little is known about symptom control for “older old” people or whether care in different settings enables them to die comfortably. This study aims to examine, in a population-representative sample, associations between factors potentially related to reported comfort during very old people’s final illness: physical and cognitive disability, place of care and transitions in their final illness, and place of death.MethodsRetrospective analyses linked three data sources for n = 180 deceased study participants (68% women) aged 79–107 in a representative population-based UK study, the Cambridge City over-75s Cohort (CC75C):i) prospective in-vivo dementia diagnoses and cognitive assessments,ii) certified place of death records,iii) data from interviews with relatives/close carers including symptoms and “How comfortable was he/she in his/her final illness?”ResultsIn the last year of life 83% were disabled in basic activities, 37% had moderate/severe dementia and 45% minimal/mild dementia or cognitive impairment. Regardless of dementia/cognitive status, three-quarters died following a final illness lasting a week or longer. 37%, 44%, 13% and 7% of the deceased were described as having been “very comfortable”, “comfortable”, “fairly comfortable” or “uncomfortable” respectively during their final illness, but reported symptoms were common: distress, pain, depression and delirium or confusion each affected 40–50%. For only 10% were no symptoms reported. There were ≥4-fold increased odds of dying comfortably associated with being in a care home during the final illness, dying in a care home, and with staying in place (dying at what death certificates record as “usual address”), whether home or care home, compared with hospital, but no significant association with disability or dementia/cognitive status, regardless of adjustment.ConclusionsThese 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. Findings on reported high prevalence of multiple symptoms can inform policy and training to improve older old people’s end-of-life care in all settings.Electronic supplementary materialThe online version of this article (10.1186/s12877-017-0605-2) contains supplementary material, which is available to authorized users.

Enabling at-homeness for residents living in a nursing home: Reflected experience of nursing home staff

“…Older people's dying and death usually takes the form of a process over a period of time (Covinsky, Eng, Lui, Sands, & Yaffe, 2003;Ross, Fisher, & Maclean, 2000). A study of older people's dying and death found that most older people are disabled in their last year of life and common symptoms they might have are distress, pain, depression and confusion (Fleming et al, 2017). However, older people's deaths have been identified as being difficult to predict and a study by Barclay et al (2014) found that, in a nursing home, being able to recognize when an older person was dying varied from case to case.…”

Quality of life of older persons in nursing homes after the implementation of a knowledge‐based palliative care intervention

“…Regardless of the facts that 38% of all deaths in Sweden occur in nursing homes (Håkansson, Öhlén, Morin, & Cohen, ) and 72% of all people who died in Sweden in 2017 were 75 years or older (Statistics Sweden, ), older persons dying of multiple morbidities or “old age” at nursing homes receive insufficient palliative care. This insufficient care may lead to older persons experiencing unnecessary suffering (Fleming et al, ; Smedbäck et al, ) and decreased QoL at the final stage of life.…”

“…These diseases usually progress over a period of time, which makes it challenging to determine when an older person's end‐of‐life stage begins (Goddard, Stewart, Thompson, & Hall, ); therefore, early signs preceding death could be difficult for the nursing home staff to detect (Åvik, Sandgren, Fürst, Ahlström, & Behm, ). The end‐of‐life process of older persons has been described as a dynamic individual process (Krishnan, ), and the final year of life is often associated with symptoms such as pain, depression, confusion and distress (Fleming et al, ), leading to decreased QoL. A high proportion of older people die shortly after moving into a nursing home (Schon, Lagergren, & Karleholt, ), and almost one‐third of older persons who move into a nursing home die within six weeks (Smedbäck et al, ).…”

“…However, previous research has noted the need for improved palliative care for older people in these settings (De Gendt, Bilsen, Vander, & Deliens, ; Gott & Ingleton, ; Schon et al, ). Not only are symptom and suffering relief lacking (Fleming et al, ; Smedbäck et al, ) but the possibilities for older persons to share their thoughts of life and death or talk about passing away with the staff are also insufficient (Österlind, Ternestedt, Hansebo, & Hellström, ). Additionally, requests from staff, that is., nurse assistants, for more education on palliative care as well as for support from Registered Nurses and managers have been described earlier (Beck, Törnquist, Broström, & Edberg, ).…”

Very old people dying – what would relatives like to have seen managed differently?

“…From interviews with relatives after the study participants' deaths, reportedly dying comfortably was associated with avoiding transitions, particularly with staying in care homes that had become home. 5 Qualitative research in the same study found participants aged 95 were willing to discuss their end-of-life care preferences. 6 We also sought to understand bereaved family members' perspectives on their 'older old' relatives' deaths.…”