Perspectives on Palliative Care in Cancer Clinical Trials: Diverse Meanings From Multidisciplinary Cancer Care Providers

J Palliat Med. 2018 May;21(5):616-621. doi: 10.1089/jpm.2017.0445. Epub 2018 Feb 1.

Abstract

Background: Palliative care (PC) is often misunderstood as exclusively pertaining to end-of-life care, which may be consequential for its delivery. There is little research on how PC is operationalized and delivered to cancer patients enrolled in clinical trials.

Objective: We sought to understand the diverse perspectives of multidisciplinary oncology care providers caring for such patients in a teaching hospital.

Methods: We conducted qualitative semistructured interviews with 19 key informants, including clinical trial principal investigators, oncology fellows, research nurses, inpatient and outpatient nurses, spiritual care providers, and PC fellows. Questions elicited information about the meaning providers assigned to the term "palliative care," as well as their experiences with the delivery of PC in the clinical trial context. Using grounded theory, a team-based coding method was employed to identify major themes.

Results: Four main themes emerged regarding the meaning of PC: (1) the holistic nature of PC, (2) the importance of symptom care, (3) conflict between PC and curative care, and (4) conflation between PC and end-of-life care. Three key themes emerged with regard to the delivery of PC: (1) dynamics among providers, (2) discussing PC with patients and family, and (3) the timing of PC delivery.

Conclusion: There was great variability in personal meanings of PC, conflation with hospice/end-of-life care, and appropriateness of PC delivery and timing, particularly within cancer clinical trials. A standard and acceptable model for integrating PC concurrently with treatment in clinical trials is needed.

Keywords: clinical trials; oncology; palliative care.

MeSH terms

  • Adult
  • Attitude of Health Personnel
  • Clinical Trials as Topic / ethics*
  • Clinical Trials as Topic / psychology*
  • Female
  • Health Personnel / psychology*
  • Hospice and Palliative Care Nursing / ethics*
  • Hospice and Palliative Care Nursing / standards*
  • Humans
  • Interdisciplinary Studies
  • Male
  • Middle Aged
  • Practice Guidelines as Topic
  • Qualitative Research
  • Terminal Care / ethics*
  • Terminal Care / psychology*