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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.
Highlights
The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death
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
Summary
The experiences of people with cancer and organ disease have been described across different dimensions of need as they approach death. Three typical end-of-life patterns or trajectories have been described: 1) acute and relatively predictable, typically cancer, 2) gradual decline with intermittent exacerbations, typically organ failure and 3) a gradual more prolonged dwindling, classically frailty or dementia with death occurring after a long period; often years [5] These are trajectories of physical function yet dying is a four-dimensional activity: physical, psychological, social and spiritual or existential [6]. Exploration of the end-oflife trajectories according to these four dimensions for people with organ disease and cancer do not clearly correspond to physical trajectories but change according to other factors [7] Such holistic and dynamic information can help to guide palliative care policy and interventions
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