Jennifer E. Ohs

Family Communication about End-of-Life Decisions and the Enactment of the Decision-Maker Role

End-of-life (EOL) decisions in families are complex and emotional sites of family interaction necessitating family members coordinate roles in the EOL decision-making process. How family members in the United States enact the decision-maker role in EOL decision situations was examined through in-depth interviews with 22 individuals who participated in EOL decision-making for a family member. A number of themes emerged from the data with regard to the enactment of the decision-maker role. Families varied in how decision makers enacted the role in relation to collective family input, with consulting, informing and collaborating as different patterns of behavior. Formal family roles along with gender- and age-based roles shaped who took on the decision-maker role. Additionally, both family members and medical professionals facilitated or undermined the decision-maker’s role enactment. Understanding the structure and enactment of the decision-maker role in family interaction provides insight into how individuals and/or family members perform the decision-making role within a cultural context that values autonomy and self-determination in combination with collective family action in EOL decision-making.

The Impact of Personal and Professional Loss on Advance Care Planning and Effective Care Delivery for Healthcare Social Workers

Personal experiences can influence the practice of social work. However, the connection between past experiences with death and social workers’ practice has been underexplored. As such, this study surveyed social workers (N = 74) about their personal and professional experiences of loss, personal advance care planning, and professional practices. Results demonstrated that social workers that experienced prior loss were more likely to complete an advance directive and communicate their end-of-life wishes. Additionally, those who had experienced personal and professional loss showed greater effectiveness on measures of patient- and family-centered communication and care delivery. Findings suggest positive outcomes for encouraging social workers to connect their personal and professional experiences surrounding death and dying to effectively serve in their professional capacity.

Connecting Personal Experiences of Loss and Professional Practices in Advance Care Planning and End-of-Life Care: A Survey of Providers

Background: Although practitioners overwhelmingly agree on the importance of advance care planning (ACP) and preparing for the end of life (EOL), the process is fraught with barriers. Objective: The goal of this research was to explore potential connections between providers’ own personal experiences and current professional practices in ACP and EOL care. Design: A cross-sectional survey design, gathering voluntary, anonymous responses from participants between August and December 2016. The survey sought information from providers in 3 distinct areas: (1) personal experiences of loss, (2) personal ACP, and (3) professional practices related to ACP and EOL care. Setting/Participants: One hundred and ninety health-care professionals (primarily physicians, nurses, and social workers) participated in the survey across a greater, Metropolitan area in the Midwest. Measurements: Questions for professional practices were subscales from the End-of-Life Professional Caregiver Survey: Patient- and Family-Centered Communication (PFCC) and Effective Care Delivery (ECD). Questions developed by the research team were evaluated by judges chosen for clinical and/or research expertise. Results: Numerous connections were found between professionals’ histories of loss, personal ACP, and professional practices. For example, both clinicians with personal experience caring for someone who is dying and clinicians who had completed their own ACP scored higher in both PFCC and ECD and were more likely to refer patients to hospice and palliative care. Conclusions: Results support educational interventions involving opportunities for reflection and completion and communication about ACP. Additionally, educational opportunities for students in health care should focus on incorporating both ACP and greater exposure to hospice and palliative care.

Problematic Integration and Family Communication about Decisions at the End of Life

ABSTRACT Making a decision on behalf of a family member at the end of life (EOL) is a highly uncertain and anxiety-ridden experience. To examine how families navigate this complex, emotionally stressful situation, Problematic Integration theory was applied as a lens for understanding EOL decision experiences managed in the context of the family. Drawing on qualitative data from interviews with 22 family members who participated in family conversations about an end-of-life decision, this study demonstrated that family members encounter multiple sources of uncertainty and divergence, including questions regarding whether or not a family member’s life is ending, what the decision should be, and who should make or participate in the decision. Family members’ stories also identified ways in which medical professionals and communication about the wishes of the patient helped family members manage problematic integration. Finally, findings revealed experiences where problematic orientations were not transformed after family members made an EOL decision.