Quality of dying after acute stroke

Hendrik Reinink, Marjolein Geurts, Constance Melis-Riemens, Annemarie Hollander, Jaap Kappelle, Bart van der Worp*

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

1 Citation (Scopus)
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Introduction: There is a lack of evidence concerning the palliative needs of patients with acute stroke during end-of-life care. We interviewed relatives of patients who deceased in our stroke unit about the quality of dying and compared their experiences with those of nurses. Patients and Methods: Relatives of 59 patients were interviewed approximately 6 weeks after the patient had died. The primary outcome was a score assessing the overall quality of dying on a scale ranging from 0 to 10, with 0 representing the worst quality and 10 the best quality. We investigated the frequency and appreciation of specific aspects of the dying phase with an adapted version of the Quality of Death and Dying Questionnaire. The nurse who was most frequently involved in the end-of-life care of the patient completed a similar questionnaire. Results: Family members were generally satisfied with the quality of dying (median overall score 8; interquartile range, 6–9) as well as with the care provided by nurses (9; 8–10) and doctors (8; 7–9). Breathing difficulties were frequently reported (by 46% of the relatives), but pain was not. Unsatisfactory experiences were related to feeding (69% unsatisfactory), inability to say goodbye to loved ones (51%), appearing not to have control (47%), and not retaining a sense of dignity (41%). Two-thirds of the relatives reported that palliative medication adequately resolved discomfort. There was a good correlation between the experiences of relatives and nurses. Discussion and Conclusion: Most relatives were satisfied with the overall quality of dying. Negative experiences concerned feeding problems, not being able to say goodbye to loved ones, sense of self control and dignity, and breathing difficulties. Experiences of nurses may be a reasonable and practical option when evaluating the quality of dying in acute stroke patients.

Original languageEnglish
Pages (from-to)268-275
Number of pages8
JournalEuropean Stroke Journal
Issue number3
Publication statusPublished - 5 Sept 2021

Bibliographical note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: HR is supported by the European Union’s Horizon 2020 research and innovation program (grant agreement No 634809).

Publisher Copyright:
© European Stroke Organisation 2021.


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