The challenges of ethical deliberation in palliative care settings: A descriptive study

Mon, 16 May 2022 00:00:00 +0000

Palliat Support Care. 2022 Apr;20(2):212-220. doi: 10.1017/S1478951521000729.

ABSTRACT

OBJECTIVE: Inadequate deliberation processes about ethical problems occurring in palliative care settings may negatively impact both patients and healthcare professionals. Better knowledge of the palliative care professionals' practices regarding such processes could help identify specific education needs to improve the quality of palliative care in the context of complex ethical situations. Therefore, this descriptive study aimed to (1) examine ethical deliberation processes in interprofessional teams in five palliative care settings; (2) identify organizational factors that constrain such processes; and (3) based on this knowledge, identify priority education needs for future and current palliative care professionals.

METHOD: The study involved three data collection activities: (1) direct observation of simulated interprofessional ethical deliberations in various palliative care settings; (2) individual semi-structured interviews; and (3) deliberative dialogues.

RESULTS: Thirty-six healthcare professionals took part in the simulated ethical deliberations and in the deliberative dialogue activities, and 13 were met in an individual interview. The study results revealed suboptimal interprofessional collaboration and ethical deliberation competencies, particularly regarding awareness of the ethical issue under consideration, clarification of conflicting values, reasonable decision making, and implementation planning. Participants also reported facing serious organizational constraints that challenged ethical deliberation processes.

SIGNIFICANCE OF RESULTS: This study confirmed the need for professional education in interprofessional collaboration and ethical deliberation so that palliative care professionals can adequately face current and future ethical challenges. It also enabled the identification of educational priorities in this regard. Future research should focus on identifying promising educational activities, assessing their effectiveness, and measuring their impact on patient and family experience and the quality of palliative care.

PMID:35574913 | DOI:10.1017/S1478951521000729

Meeting ethical challenges with authenticity when engaging patients and families in end-of-life and palliative care research: a qualitative study

Mon, 16 May 2022 00:00:00 +0000

BMC Palliat Care. 2022 May 16;21(1):74. doi: 10.1186/s12904-022-00964-x.

ABSTRACT

BACKGROUND: Delivering high quality, patient- and family-centered care depends upon high quality end-of-life and palliative care (EOLPC) research. Engaging patients and families as advisors, partners, or co-investigators throughout the research lifecycle is widely regarded as critical to ensuring high quality research. Engagement is not only an ethical obligation, it also raises ethical challenges of its own. We conducted a qualitative study to understand ethical challenges and potential solutions when engaging patients and families in EOLPC research.

METHODS: We recruited and interviewed 20 clinical investigators and 22 patients or family caregivers through the Palliative Care Research Cooperative Group (PCRC). Interview transcripts were analyzed using constructivist grounded theory methodology. Analysis sought to identify ethical challenges and potential solutions, as well as to synthesize findings into practical recommendations tailored to engaging patients and families in EOLPC research.

RESULTS: Our study identified 8 ethical challenges considered unique to the EOLPC research context and 11 potential solutions to these challenges. The most frequently described ethical challenges included the need to minimize burdens of engagement for patients and caregivers, challenges of dealing with death and illness, and paternalism or "gatekeeping" (i.e., withholding the opportunity to participate from patients or caregivers). Investigators and patients or family caregivers conceptualized ethics challenges differently; several issues appeared to fall outside a traditional research ethics paradigm and more into the ethics of relationships. We synthesized these findings into 4 practical recommendations hypothesized to support authentic engagement.

CONCLUSIONS: Engaging patients and families in EOLPC research can raise unique ethical challenges. These challenges can be overcome to empower participation, minimize the unique burdens of EOLPC, and promote diversity. Whereas traditional research ethics tend to emphasize protecting research participants who may be vulnerable, an ethics approach based on authentic engagement that explores what it means for investigators and patients or family caregivers to be in a relationship may be needed. Future research is needed to explore this approach and test these recommendations in practice.

PMID:35578262 | DOI:10.1186/s12904-022-00964-x

ethique_AMM_fin_vie

The challenges of ethical deliberation in palliative care settings: A descriptive study

Meeting ethical challenges with authenticity when engaging patients and families in end-of-life and palliative care research: a qualitative study