Physical, social, psychological and existential trajectories of loss and adaptation towards the end of life for older people living with frailty: a serial interview study

Abstract

BackgroundThe experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Such information is lacking for frail older people approaching death, but could highlight how a palliative approach might be relevant for this population.MethodsCognitively intact, community dwelling adults considered to be moderately or severely frail were recruited from a medical day hospital. Those recruited nominated an informal carer and case-linked professional. Qualitative in-depth serial interviews with older people and their informal carers were conducted over an 18 month period, and single interviews with case-linked healthcare professionals. Interviews were recorded, transcribed and narrative analytical techniques were used to compile case studies.ResultsThirty-four participants (13 patients, 13 informal carers and 8 healthcare professionals) completed 40 individual, 14 joint and 8 professional interviews. Five patients died during the study. The analysis highlighted a dynamic balance between losses and adaptations. Three typical patterns of multi-dimensional change emerged. 1) Maintenance of psychological and existential well-being with a gradual social decline mirroring the physical deterioration. 2) a gradual reduction in both psychological and existential well-being. 3) a marked downturn in social, psychological and existential well-being before death. Frail older people sustained their well-being through maintaining a sense-of-self, garnering support from carers and community structures, and focusing on living from day to day. Their well-being lessened when they lost their sense-of-self, feeling alienated from the world, and confused over the cause of their circumstances. Death remained distant and ‘undiagnosed’. Social and community frameworks were essential for supporting their well-being.ConclusionsMultidimensional end-of-life trajectories for frail older people differed from those with other conditions. Alleviating psychological, social and existential distress should be a priority of care as frail older people reach the end of life. The current palliative care model is problematic for this group. Care should address future concerns and not necessarily involve a focus on death or place of death.

Identifying acceptable components for home-based health promotion services for older people with mild frailty: A qualitative study

“…shopping, gardening, crosswords) and internal processes (e.g. accepting decline and interdependency) to maintain positive well‐being (Birkeland & Natvig, ; Boggatz & Meinhart, ; D'Avanzo et al., ; Holm & Severinsson, ; Lloyd et al., ; Lommi et al., ; Menichetti & Graffigna, ; Nicholson, Meyer, Flatley, Holman, & Lowton, ; Warmoth et al., ). Our study showed that people with mild frailty, whose needs have not previously been explored, engage in similar health promotion activities and have similar motivational barriers.…”

“…Older people's views have been widely canvassed regarding self‐care, health promotion and lived experiences of frailty (Birkeland & Natvig, ; Lloyd, Kendall, Starr, & Murray, ; Lommi, Matarese, Alvaro, Piredda, & De Marinis, ; Menichetti & Graffigna, ). However, to our knowledge, no study has focussed specifically on community‐dwelling populations with mild frailty in the United Kingdom (UK), explored the acceptability of different health promotion behaviours or offered practical recommendations for designing new health promotion services.…”

Palliative care from diagnosis to death

“…Some older people reach a tipping point when they feel unable to live usefully or with dignity and experience increasing psychological and existential distress before dying. 21 Actions to promote optimum physical health should be combined with help to engage with social support and care that let frail older people maintain a sense of self and purpose even in the face of increasing dependence. Allowing older people to raise and discuss their greatest fears-of losing independence, dementia, or being a burden to others-is person centred early palliative care.…”

“…The content and the context of such conversations should be relevant to the person's current state and involve those close to them (box 1). [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28] Many clinicians find it challenging to raise palliative care with patients because it is associated with imminent death. In Canada and the UK some palliative medicine physicians use the term "supportive care" to promote access.…”

Home-based health promotion for older people with mild frailty: the HomeHealth intervention development and feasibility RCT

“…230 The MoCA is scored continuously out of 30, with ≥ 26 considered normal 230 and has good sensitivity and specificity for detecting mild cognitive impairment and mild Alzheimer's disease. 183 The MoCA was research assistant administered at baseline and 6 months. We did not exclude participants on the basis of their MoCA scores, only if they lacked capacity to consent.…”