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

BMC Geriatrics

Research Article

John M. Starr¹  Marilyn Kendall²  Scott A. Murray²  Anna Lloyd³ 

[1] Alzheimer Scotland Dementia Research Centre, The University of Edinburgh, 7 George Square, EH8 9JZ, Edinburgh, UK;Primary Palliative Care Research Group, The Usher Institute of Population Health Sciences & Informatics, The University of Edinburgh, Medical School, Teviot Place, EH8 9AG, Edinburgh, UK;Primary Palliative Care Research Group, The Usher Institute of Population Health Sciences & Informatics, The University of Edinburgh, Medical School, Teviot Place, EH8 9AG, Edinburgh, UK;Centre for Education and Research, St Columba’s Hospice, 17 Boswall Road, EH5 3RW, Edinburgh, UK;

关键词: Palliative care;    Qualitative research;    Older persons;    Frailty;    Functional decline;   

DOI  :  10.1186/s12877-016-0350-y

 received in 2015-12-22, accepted in 2016-10-04,  发布年份 2016

来源: Springer

【 摘 要 】

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.

【 授权许可】

CC BY   
© The Author(s). 2016