End-of-life decision making for persons with dementia: Proxies' perception of support

Abstract

Healthcare proxies need support in making end-of-life decisions for persons with dementia (PWD). This study explored perceptions of support in decision making among proxies of PWD through semi-structured interviews with 20 proxies. Thematic analysis identified three sources of support: family, doctors, and religiosity/spirituality. Family's engagement in care discussions and support for proxies' decisions were viewed helpful while disagreement or criticism, combined with lack of knowledge about PWD's condition and needs, were not. Doctors were viewed supportive when proxies felt doctors respected their opinions and PWD's wishes. Doctor-PWD rapport influenced proxies' views of medical advice from doctors. Although religiosity/spirituality provided guidance and hope, it also presented conflicts when PWD's wishes differed from proxies' beliefs. Therefore, families of PWD should be provided with assistance in reconciling or mediating family conflicts and further education about the illness trajectory as well as risks/benefits of life-sustaining treatments. Assistance should also be provided to address religious/spiritual conflicts.