Commentary to: "Timely dying in dementia: Use patients' judgments and broaden the concept of suffering." Timely dying, suffering in dementia, and a role for family and professional caregivers in preventing it

Jenny T van der Steen, Trijntje M Scheeres-Feitsma, Petruschka Schaafsma

Research output: Contribution to journalComment/Letter to the editorAcademicpeer-review

Abstract

Broadening the concept of suffering in dementia to five types of suffering including suffering of family caregivers as proposed by Terman et al., may help raise awareness on a need to relieve suffering when living with dementia and adopt a holistic approach. However, as objective criteria in advance care plans for severe enough suffering to stop assisted feeding or other life-sustaining treatment in people with advanced dementia, these still need interpretation in the context of, for example, available treatment, and change in coping. New is the proposal to broaden severe enough suffering to suffering of family, including "bi-directional empathic suffering." We believe this creates new dilemmas regarding responsibility and may increase feelings of guilt. Quantifying suffering by adding up moderate suffering could further complicate matters. Therefore, we argue that a health care professional should guide the process and assume responsibility over current decisions to follow a person's previous wishes.

Original languageEnglish
Pages (from-to)e12536
JournalAlzheimer's & Dementia: Diagnosis, Assessment & Disease Monitoring
Volume16
Issue number1
DOIs
Publication statusPublished - 2024
Externally publishedYes

Keywords

  • caregivers
  • dementia
  • end-of-life

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