End-of-life Decision Making for Nursing Home Residents with Dementia

Purpose: To describe families' decision-making processes, both cognitive and affective, regarding end-of-life treatments for nursing home residents with moderately severe to very severe dementia.

Design: Naturalistic inquiry provided the framework for this descriptive, qualitative study.

Methods: Four focus groups were conducted in selected nursing homes, in the central part of the United States for a qualitative study. Twenty-eight family members of residents with moderately severe to severe dementia shared their decision-making experiences. Open-ended questions were asked in each focus group. Data were analyzed using content analysis.

Findings: Five themes were identified that describe the context of decision making: emotional effect, insult-to-life story, two faces of death, values and goals regarding end-of-life treatments, and the unrecognized trajectory of dying. Family members made decisions in an emotional climate of overwhelming burden and guilt, because their loved one's life had been robbed of personhood, the changes associated with decline from a dementia-related illness were unrecognized as part of a trajectory of dying, death was both a tragedy and a blessing.

Conclusions: Family members had poignant, unresolved emotional needs stemming from their loved one's illness and nursing home placement. Participants were unprepared to make end-of-life treatment decisions and lacked the informational and emotional support of a consistent provider to help with decisions. Family members need assistance in processing difficult and painful emotions, understanding the trajectory of disease, what decisions might impede a natural death, and comfort or palliative care options.