The presence and intensity and the related changes over time of physical symptoms in the dying phase : A prospective cohort study of residents dying in care homes

Partington, Lynne and Brearley, Sarah and Perez Algorta, Guillermo and Froggatt, Katherine (2020) The presence and intensity and the related changes over time of physical symptoms in the dying phase : A prospective cohort study of residents dying in care homes. PhD thesis, Lancaster University.

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Abstract

Background Currently 22% of the UK population die in care homes, mostly within 18 months of admission, yet there is little research about the nature of symptoms at the end of life in this population. The limited evidence suggests that the dying trajectory may be different to other populations. Aim To describe the presence and intensity of physical symptoms of residents during the dying phase and explore common characteristics that occur over time. Methods This prospective cohort study used the Modified Edmonton Symptom Assessment Scale (ESAS) to collate demographic and symptom characteristics from 157 residents during the final days of life in 11 care homes. Descriptive statistics were used to present demographic and clinical characteristics. The presence and intensity of both symptom load and individual symptoms was tested for significance with either ANOVA or Cochran’s Q and post-hoc comparisons performed. Finally, an inferential analysis was performed to test for associations between presence and intensity and key characteristics. Results The five most common symptoms nearest to death were drowsiness, fatigue, anorexia, unable to respond and shortness of breath with a significant increase in both presence and intensity of these symptoms towards the time of death. Only a small number of associations between demographics, diagnoses and symptoms were observed. Discussion The main symptoms occurring in residents relate to a general deteriorative condition suggesting that dying in care homes is characterised by a gradual decline, with an increased presence and intensity of symptoms towards the time of death. Symptoms can be classified as ‘silent’ or ‘strident’, resulting in a typology that has not been previously identified in symptom research in this population. The limited associations between co-variables indicate that despite differences in age, gender, number of diagnoses and length of stay, this cohort is a homogenous group during the last few days of life. Conclusion The research findings have implications for end of life care of residents, education and support requirements for professionals and for the wider research community.