Preparing for Decisions at the End of Life: Social Work, Hospice and Oregon's Death with Dignity Act

Background and Purpose: Oregon's Death with Dignity Act has been in effect for twelve years and 460 terminally ill Oregonians have used a lethal prescription to end their lives. Eighty-eight percent (404) were enrolled in hospice where social work is a mandated service. Although social work is not mentioned in the law, social workers have an important and extensive role on the interdisciplinary hospice team. This study's objectives were to examine hospice agency policies about the Act, social work assessment and intervention with patients and families around decision-making at end-of-life with the Act as an option, mental health assessment of patients who consider the Act, impact on bereavement, voluntary refusal of food and fluids (VRFF) and palliative sedation as alternatives to the Act, and social workers' self-awareness and educational preparation. Methods: All of Oregon's hospice social workers were invited to complete a survey designed by the co-principal investigators. The list of potential subjects was obtained from a state agency and surveys were sent by mail. Respondents could return the survey by mail or respond via a provided website. Although the survey was mostly quantitative, there were several opportunities for open-ended answers. The response rate was 51% with 119 out of 232 surveys returned. The average age of the respondents was 48, 81% were female, most were Caucasian, and 111 had M.S.W. degrees. Results: Most social workers were not involved in policy development about the Act within their hospices. Although over one-half were not permitted to be present when the medication was taken, eight social workers reported that they were present at the time of death. Almost 60% of the respondents had participated in family meetings to specifically discuss the choice of assisted death and some family conflicts particular to the option were identified. In terms of mental health, social workers were sometimes asked directly about patient capacity and a few had been directly contacted by the prescribing physician. Challenges during bereavement were specified and some terminally ill hospice patients chose VRFF or palliative sedation as alternatives to the Act. These choices often were driven by religious values or physical limitations. Four social workers reported that they had been reprimanded in relation to the Act. Conclusions and Implications: This study explored how social workers were involved with patients and families that consider and ultimately use a lethal prescription to end life. This is the only research that documents social work's role within this end-of-life option in a state where it is has been available to the terminally ill for twelve years. In March 2009, the state of Washington implemented a law similar to Oregon's and the state of Montana now allows this practice due to a judicial ruling. This unique data set can provide guidance to social workers regarding practice and policy issues where the option is now legal as well as to practitioners and researchers in those states that will surely continue this debate. Further investigation would offer the opportunity for comparison of policies and practices.