Background Hospital is considered an undesirable place to die. Concerns have been expressed about the quality of end of life care in this institutional setting, especially for patients dying with dementia.
Aims To explore end of life care for frail older people with and without dementia on acute hospital wards and whether there were differences between these two groups of patients.
Methods Qualitative UK study based on 245 hours of observation, interviews with 38 ward staff and 13 bereaved relatives and review of 42 patient medical records.
Results The study findings highlight the difficulty of recognising dying in frail older patients experiencing protracted decline prior to death. No differences were identified in the care and family experience of patients dying with or without dementia. It is difficult to apply the model of palliative care to older patients dying in acute hospital settings. Uncertainty of prognosis makes clinical decision making difficult, and exacerbates problems of communication with patients and families. Staff contact with dying patients and their relatives tended to be brief and task oriented. Across the wards, the variability in the families' experience of care was striking. Some families reported feeling unsupported throughout the vigil they kept for their dying relative. For others, however, hospital was, or came to be, the preferred or most appropriate place, and could even provide a positive experience of death and dying.
Conclusion Although hospital is widely regarded as the least preferred place of death, it will continue to be where most people die. It is important that the hospital is adequately resourced to provide sensitive, compassionate care to dying patients and their families. This will require substantial changes in the physical environment, organisation and delivery of care, and in staff understanding of their role in supporting and communicating with patients and their family carers.
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