Experiences With End-of-Life Care for Patients With Pre-Existing Severe Mental Disorders, Their Relatives, and Healthcare Professionals

Int J Ment Health Nurs. 2025 Feb;34(1):e13498. doi: 10.1111/inm.13498.

Abstract

Knowledge is needed about end-of-life care among patients with pre-existing severe mental disorders: Schizophrenia, bipolar disorder, and depression. This study aimed to explore the experiences with end-of-life care for patients with severe mental disorders, their relatives, specialised palliative care nurses and physicians, and general practitioners. Twenty semi-structured interviews were conducted and analysed using reflexive thematic analysis, hereby six interviews with patients, three with relatives, five with general practitioners, and six with specialised palliative healthcare professionals. Patients were selected with help from healthcare professionals. Four main themes were produced: thoughts about the future, healthy relations in end-of-life, changes in psychiatric condition in end-of-life, and the role of openness. Patients with severe mental disorders had wishes and fears for the future, and all participants expressed that healthy relations were crucial for patients at the end-of-life. However, sometimes this was challenged by prior complex relationships. It differed whether patients experienced a change in their psychiatric condition after having a terminal disease. Openness about severe mental disorders and end-of-life were regarded as important. Having the opportunity to openly discuss both wishes, fears, and mental disorders with healthcare professionals and having healthy relations are important for patients with severe mental disorders at the end-of-life. Insecurity about severe mental disorders among specialised palliative care professionals may lead to less openness about severe mental disorders. To optimise end-of-life care, patients need professionals to be present and available to discuss problems related to social, physical, existential, and psychiatric conditions.

Keywords: health personnel; mental disorders; palliative care; patients; qualitative research.

MeSH terms

  • Adult
  • Aged
  • Family* / psychology
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Mental Disorders* / psychology
  • Mental Disorders* / therapy
  • Middle Aged
  • Palliative Care / methods
  • Palliative Care / psychology
  • Terminal Care* / psychology