Medical aid in dying is an end-of-life option that allows individuals with less than 6 months to live to obtain medication to end their life. Medical aid in dying is legal in 11 US states, and more than 12 countries have legalized medical aid in dying in at least one state or province.
Although the primary intention of medical aid in dying is to reduce suffering for the patient, this process also affects the patient’s family members and friends. Despite this, there is limited research on the bereavement outcomes of loved ones. In a new study published in Palliative Medicine, Fred Hutch researchers and collaborators examined risk and protective factors of negative bereavement outcomes for family members of individuals who engaged in medical aid in dying.
“We are very interested in the bereavement experience of individuals who participate in medical aid in dying and their loved ones,” said Dr. Elizabeth Loggers, an associate professor in the Clinical Research Division at Fred Hutch, who is the senior author for this study in conjunction with Dr. Jonathan Singer, lead author and an assistant professor of Psychological Sciences at Texas Tech University and Fred Hutch affiliate investigator.
“However, as we began to study this area, we realized there was very little available data from previously published research. What was available was also largely qualitative and did not have a strong theoretical underpinning,” said Dr. Loggers. “Therefore, we decided to formally review the literature and propose a model to guide future research.”
The team of researchers conducted a systematic review of the existing literature that reported on the bereavement outcomes of family members and friends whose loved ones had engaged in medical aid in dying. The researchers identified more than 4000 potential primary articles, and ultimately reviewed 13 research articles.
Their analyses revealed five factors that protected families and friends from negative bereavement outcomes following a loved one’s death from medical aid in dying: preparedness for death, location of death, sense of control and autonomy, reduction in suffering or burden for the patient, and being able to support the patient’s end-of-life wishes. They also identified six risk factors that correlated with negative bereavement outcomes, including moral problems, ambivalence towards medical aid in dying, and poor communication at the end of life between the family and patient and/or medical provider.
The researchers also found three additional themes that fell under the umbrella of “double-edged experience”: that is, factors that confer both protection and risk for negative bereavement outcomes. The three “double-edged” factors were poor social integration and stigma, less time with the person with the terminal illness, and preparation for death.
These findings highlight the complexity of bereavement outcomes experienced by the families and friends of the person selecting medical aid in dying. “The most intriguing finding is the idea that certain experiences surrounding medical aid in dying could both improve or worsen bereavement outcomes for loved ones,” said Dr. Loggers. “For example, knowing the exact day of the death provides certainty and the ability to plan, but this may also be perceived as shortening the time a loved one has with the seriously ill person. The same experience might make accepting the death easier or harder.”
To guide future research, the authors developed a theoretical model of risk and protective factors. This model delineates risk and protective factors that occur before and after the death of the individual who engaged in medical aid in dying. It includes five before-death protective factors from the literature review, but no post-death factors were identified in the reviewed articles. However, post-death factors have been identified for physicians who provide aid in dying, suggesting that more research is needed to identify these factors for families and friends.
“Our review of the literature reinforced that very little is known in this area,” said Dr. Loggers. “In the future, it will be important to study known predictors of poor bereavement, as well as to investigate potential new predictors associated specifically with medical aid in dying.” The researchers also stressed the need for longitudinal research to identify risk and protective factors unique to this population. Longitudinal research would also reduce biases from memory and social interaction, which can skew retrospective surveys.
Moving forward, a greater understanding of the different risk and protective factors would allow medical practitioners to predict, and therefore provide appropriate services, for bereaved family members, friends, and caregivers of individuals who engage in medical aid in dying.
The Fred Hutch/University of Washington/Seattle Children’s Cancer Consortium member Dr. Elizabeth Loggers contributed to this work.
Singer J, Daum C, Evans A, Schneider S, Vugrin M, Loggers E. 2023. An examination and proposed theoretical model of risk and protective factors for bereavement outcomes for family members of individuals who engaged in medical aid in dying: A systematic review. Palliat Med. 02692163231172242.