Hindering or Helping: Discussing Patient Participation in Clinical Ethics Support Service Deliberation

AbstractClinical ethics support services (CESS) are advisory bodies that deal with ethical conflict arising in healthcare. Patient involvement with CESS remains a contentious issue, without uniform practice regarding whether, how, and when patients should be involved. The overall objective of the study was to understand key stakeholders' viewpoints about CESS and urgent decision-making. Patient involvement and clinical ethics emerged as a key area of discussion. Three stakeholder groups were recruited: doctors in England, CESS members in England, and CESS members in the United States. Recruitment occurred via dissemination of the study online and via email. This resulted in a sample size of 13 participants. The focus group transcripts were analyzed using reflexive thematic analysis. The study found that there was uniform acceptance of the importance of patient representation by all stakeholders. However, the ways in which their involvement was facilitated varied. CESS members in the United States routinely involved the family directly by discussion with the clinical ethicist. However, CESS members and doctors in England viewed patient presence in committee meetings as a barrier to open discussion. Instead, CESS in England would seek ways in which involvement could occur, such as a written statement or advocation by the clinical team. The clinical ethicist model, adopted in the United States, appears to support direct patient involvement in the consultation process, in comparison to the clinical ethics committee model adopted in England. However, these results are limited by the small sample size and small number of viewpoints represented.