Optimising Palliative Care for Frail Elders in Community Settings; Preferences for Care and Palliative Outcomes in the Last Months of Life

Abstract

IntroductionPeople are living longer and increasingly die with frailty and complex co-morbidities. Many suffer unnecessarily because of limited recognition of palliative care needs, aggressive management and under treatment. Palliative care is advocated for frail older people with non-malignant conditions to improve assessment and treatment, but with little evidence of effectiveness.Aim(s) and method(s)Aim to determine the preferences for care and palliative outcomes for frail elders by place of death (own home, care home or hospital). Post-bereavement survey (QUALYcare) to carers (n=882) of people aged over 75 years or over via ONS. Survey examines quality of EoLC, preferences and palliative care outcomes for frail elders (malignant and non-malignant conditions). Data analysis using descriptive and inferential statistics to compare by place of death frequency of attainment of preferred place of death, prevalence of palliative outcomes, and formal and informal service use (no. and %, with 95% CI, Chi2 )Results443 (50.2%) participants mainly a son/daughter (68.2%). Majority deceased widowed (53.5%) and lived alone (41.8%). Most resided last months at home (42.9%), or care home (nursing home 22.8%; residential 12%). 35.7% died in hospital, mostly transferring from own home ()n=74/190) or a residential home (n=25/53), but few from nursing homes (15/101). Nearly half who died in hospital resided there for 1–4 weeks (45.6%).Conclusion(s)An opportunity to improve palliative care is responsiveness to timely discharge from hospital for people to die in preferred community settings. Nursing homes care for the majority of people until death, but residential care homes with no onsite nursing require greater support.

Death and the Oldest Old: Attitudes and Preferences for End-of-Life Care - Qualitative Research within a Population-Based Cohort Study

“…[ 9 ; 11 ; 14 ; 23 ; 29 ; 36 – 40 ] Others have given thoughtful consideration to the need to recognise that more dying people are following longer frailty trajectories and the implications for care services. [ 6 ; 16 ; 26 ; 41 ; 42 ] Previous research has highlighted challenges of improving communication about preferences[ 7 ; 25 ; 26 ; 34 ; 40 ; 41 ; 43 – 46 ]; we noted with interest other researchers’ comments that participants welcomed interviews as an opportunity to express thoughts,[ 11 ] as did many of ours. We found questions on specific topics could open up dialogue with people hesitant to discuss dying in general.…”

“…[ 38 ; 42 ; 56 ] Half of UK deaths aged ≥85 are in hospitals and a third in care homes[ 53 ] so improving end-of-life care for very old people in all settings is a priority. [ 7 ; 30 ; 41 ; 42 ; 54 ; 57 – 60 ] Prospective population-based research with older old people, and their informal and formal carers, examining determinants of staying-in-place or transitions is needed to understand what would enable older people to die in the place and with the support they would choose.…”

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

“…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 ].…”

“…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 ].…”

“…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 ].…”