Rethinking End-of-Life Care and Palliative Care: Learning From the Illness Trajectories and Lived Experiences of Terminally Ill Patients and Their Family Carers

Qual Health Res. 2018 Dec;28(14):2220-2238. doi: 10.1177/1049732318796477. Epub 2018 Sep 20.

Abstract

Lynn conceptualized end-of-life (EoL) care for patients with advanced chronic-progressive illnesses as a combination of life-preserving/palliative care, the palliative aspect gradually becoming the main focus as death approaches. We checked this concept by exploring the advanced-terminal illness trajectories of 50 patients. Strategies heralding active therapy exhaustion were the catalyst for a participant's awareness of terminality, but were not a decisive factor in the divergent EoL care pathways we detected. The terms life-preserving and palliative do not adequately capture EoL care pathways due to their conceptual ambiguity. Conversely, the concept of EoL care encompassing three palliative care modalities ( life-prolonging palliative therapy, restorative palliative care, and symptom-oriented [only] palliative care), each harboring a different blend of life-preserving and symptom-comforting aspects, proved adequate. These modalities could run serially, oscillatorily, or parallelly, explaining the divergent EoL care pathways. We suggest an adjustment of the model of Lynn and reconsider the traditional palliative care concept.

Keywords: Qualitative analysis; Western Europe; advanced illness; chronic-progressive disease; end-of-life care; illness trajectories; interviews; life-preserving care; medical care; palliative care.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Aged
  • Aged, 80 and over
  • Belgium
  • Caregivers / psychology*
  • Decision Making
  • Female
  • Humans
  • Interviews as Topic
  • Male
  • Middle Aged
  • Palliative Care / organization & administration*
  • Palliative Care / psychology*
  • Patients / psychology*
  • Qualitative Research
  • Terminal Care / organization & administration*
  • Terminal Care / psychology*
  • Withholding Treatment