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Symptom evolution in the dying
  1. Madelon T Heijltjes1,
  2. Lia van Zuylen2,
  3. Ghislaine JMW van Thiel1,
  4. Johannes JM van Delden1 and
  5. Agnes van der Heide3
  1. 1 Julius Center for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, The Netherlands
  2. 2 Department of Medical Oncology, Amsterdam University Medical Centres, Amsterdam, The Netherlands
  3. 3 Department of Public Health, Erasmus Medical Center, Rotterdam, The Netherlands
  1. Correspondence to Madelon T Heijltjes, Julius Center for Health Sciences and Primary Care, University Medical Centre Utrecht, Utrecht, Netherlands; m.t.heijltjes-2{at}


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.

  • Terminal care
  • End of life care

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  • Contributors All authors were involved in speficying the research question in advance. MH and AvdH analysed the da in the light of this research question. MH wrote the initial manuscript. All authors gave feedback and contributed to the final manuscript.

  • Funding This study is funded by The Netherlands Organisation for Health Research and Development (grant number 844001502).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.