"If Our Job Is Truly to Listen to the Suffering, There Should be a Deeper Understanding of Why Some People Want This": Physician Experiences with Medical Aid in Dying Have Implications for Social Work

Background and Purpose: The rapid pace of medical aid in dying (MAiD) policy change in the U.S., including the elimination of residency requirements in Vermont and Oregon, demands all who practice with those diagnosed with life-limiting illness understand how their own role and patient population may be affected. Previous studies have found that medical social workers in states where MAiD is illegal are nonetheless faced with inquiries from patients and families about MAiD. The purpose of this study was to discover and describe MAiD physician experiences. Physicians’ discussions of their own practice experiences and those of other bedside attendants (including social workers) yielded results highly relevant to medical social workers involved in clinical practice, policy advocacy, and research.

Methods: Data were collected using ethnographic methods including participant observation at a national MAiD conference, and narrative and semi-structured interviewing with (n=20) physicians practicing MAiD in jurisdictions across the U.S. where legal. Serial interviewing was used to triangulate data from participant observation, confirm or clarify findings from initial interviews and ask follow-up questions, resulting in a total of 38 physician interviews. Techniques from both the constant comparative method and thematic analysis were used to analyze interviews, field notes, and excerpts from conference presentations.

Results: Three themes from the data are relevant to social work practice, policy advocacy, and research: 1) MAiD conversations, 2) hospice support, and 3) family needs during the death vigil. Reported MAiD conversations started at different points in disease trajectories; were initiated in diverse ways; and expressed shifting goals of care, family dynamics, ambivalence, fear, and loss. Hospice policies and staff support for MAiD patients ranged from “kicking them off” hospice to being at bedside for their planned death. Hospice staff may assist in assessing red flags (for MAiD complications); discussing quality of life, care goals, and disease progression; and providing support during and after death (bereavement follow-up). Psychosocial support during a planned MAiD death was described as integral. Interventions ranged from normalizing signs and symptoms to initiating life review. Clinical leadership suggested that the ability to “read the room” during the death vigil is key.

Conclusions and Implications: MAiD physician reports and clinical training/conference materials indicated that MAiD patient-family conversations include psychosocial elements frequently addressed by medical social workers, especially in hospice and palliative care. Given MAiD’s expanding availability and potential hospice support roles, social workers should advocate for open policy discussions in their organizations, or at local and state levels. Social workers must be knowledgeable about organizational and state policies when developing their approach to handling MAiD discussions. Other factors such as practice setting, location, and disease process may impact patient-family needs and capacities for intervention. Finally, MAiD provides a unique setting in which to understand death vigil/active dying interventions. Support reported during the death vigil (after MAiD ingestion) points to a need for hospice/palliative social work presence at planned deaths. Future social work research should address social work perspectives of MAiD conversations, family needs during and after the death vigil, and the role for psychosocial intervention.