Symptom evolution in the dying

Madelon T. Heijltjes*, Lia Van Zuylen, Ghislaine J.M.W. Van Thiel, Johannes J.M. Van Delden, Agnes Van Der Heide

*Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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Objective Provide insight in the prevalence of symptoms in patients who are in the last days of life. Methods A retrospective descriptive analysis of data on patients who died between 2012 and 2019 at the age of 18 or older in 1 of 20 Dutch healthcare facilities, including hospitals, inpatient hospices and long-Term care facilities. We analysed data from 4 hourly registrations in the Care Programme for the Dying Person, to assess for how many patients symptom-related goals of care were not achieved. We looked at the first 4 hours episode after the start of the Care Programme and the last 4 hours episode prior to death. Results We analysed records of 2786 patients. In the first 4 hours episode, at least one symptom-related care goal was not achieved for 28.5%-42.8% of patients, depending on the care setting. In the last 4 hours episode, these percentages were 17.5%-26.9%. Care goals concerning pain and restlessness were most often not achieved: percentages varied from 7.3% to 20.9% for pain and from 9.3% to 21.9% for restlessness. Conclusions Symptom control at the end of life is not optimal in a substantial minority of patients. Systematic assessment and attention as well as further research on symptom management are of the essence.

Original languageEnglish
Pages (from-to)121-124
Number of pages4
JournalBMJ supportive & palliative care
Issue number1
Early online date21 Nov 2022
Publication statusPublished - 20 Feb 2023


  • End of life care
  • Terminal care


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