Background - The care of elderly patients with severe cognitive impairment at the end of life presents families and health professionals with many challenges. Families and professionals may be unclear about the goals of care and their respective roles in end-of-life decision-making. We examined families' end-of-life decision-making and interaction with health professionals. Methods - Twenty eight family members of institutionalized dementia patients participated in four focus groups. Participants discussed open ended questions regarding end-of-life decision-making. Transcripts of the four focus groups were coded and organized using NUD.ISTŪ software; the findings were identified using a process of peer debriefing and exploration of rival explanations. Results - The participating family members (1) experienced substantial burdens and loss in caring for institutionalized elders; (2) generally were not comfortable in their roles as surrogate decision- maker; (3) had limited understanding of the natural progression of dementing conditions; (4) were uncomfortable in setting goals for their relatives' end-of-life care, even when they had clear preferences for their own care; (5) had little experience with death, and expressed ambivalence about death; and (6) reported that they had little substantive communication with health professionals regarding end-of-life care planning. Conclusions - Health professionals should (1) assume responsibility for initiating and maintaining communication with families; (2) provide detailed information on the natural course of the patient's condition, culminating in death; (3) assist families in an ongoing process of goals clarification; and (4) discuss and clarify the respective roles of families and health professionals in end-of-life decision-making.
Learning Objectives: At the conclusion of the session, the participant (learner) in this session will be able to: (1) Describe the decision-making experiences of families of institutionalized dementia patients (2) Describe the information and support needs of such families (3) Outline the services that health professionals should offer to families of dementia patients as end of life approaches
Keywords: End-of-Life Care, Dementia
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.