Families' acceptance of near death: A qualitative study of the process for introducing end-of-life care

Providing effective end-of-life (EOL) care for the elderly with severe brain damage is difficult because patients' families find it hard to accept the condition of their loved ones as "near death". In Japan, this has become an urgent social problem. Although health-care teams sometimes expect that the elderly with severe brain damage should be treated as terminal, many find that patients' families cannot accept the condition as near death. As a result, they are not able to appropriately introduce any EOL services. It was the aim of the present study to develop a comprehensive understanding of the process by which families accept the elderly with severe brain damage as near death. Qualitative methodology with focus groups and semi-structured interviews were used. Twenty-three participants in two sets of male and female focus groups were interviewed in a semi-structured format. Ten participants (five men and five women) who made important medical decisions were then interviewed separately. Eleven categories emerged: (i) family affection with wishes for continued survival; (ii) vacillation of desire for death with dignity; (iii) family members' hierarchy; (iv) awareness that others may make different decisions; (v) family members' discussion overcoming discordance; (vi) satisfaction with physicians' explanations; (vii) impressions of life-sustaining measures; (viii) entrusting important decisions to hospital physicians; (ix) significance of family members' previous experiences; (x) patient's age; and (xi) duration of medical treatment. We developed a conceptual model that is useful for evaluating which stage of the process families are currently experiencing as well as introducing EOL care in a timely manner.