Background Worldwide more people are living long enough to die in old age. This trend brings challenges associated with dying in the context of multiple advanced chronic illnesses. In the USA, some frail elders live in nursing homes (NH). While paid staff are available, many family members remain involved in the elder’s daily life.
Aim Describe a conceptual model of how family members arrive at the main goal of care for elders and state obstacles to arriving at and communicating the goal.
Methods Qualitative data from family of 54 NH residents in the USA were collected over 6 months. Content analysis helped to identify patterns in the data.
Results Families weigh four factors when approaching medical decisions: the elder’s medical status/prognosis, available options, the elder’s preferences, and their own expectations of what a “good” daughter or spouse would do. This latter factor is seldom reported in the literature and yet can be powerful, especially if information about the other factors is lacking.
Discussion Health professionals can increase their skill in engaging family members and elders in important conversations about goals of care. The family needs information from the health professional, who will need information from the elder and family in order for everyone to understand and accept the goals of care.
Conclusion Many families are bewildered when facing medical decisions. Information and emotional support can assist them in understanding options in the context of resident preferences, goals of care, and their own sense of how a “good” family behaves.
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