Elephant in the room - Family members´ perspectives on advance care planning

OBJECTIVE: To explore family members’ experiences of advance care planning in nursing homes. DESIGN: Individual interviews. Thematic analysis. SETTING: Four nursing homes in Sweden. SUBJECTS: Eighteen family members of deceased nursing home patients. MAIN OUTCOME MEASURES: Family members’ experiences of advance care planning in nursing homes. RESULTS: Family members’ experiences of advance care planning in a nursing home context involved five themes: Elephant in the room, comprising end-of-life issues being difficult to talk about; Also silent understanding, e.g. patient’s preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patient’s wishes although preferences had not been communicated openly; Significance of small details, e.g. family members perceive everyday details as symbols of staff commitment; Invisible physician, supporting nurse, e.g. nurse being a gatekeeper, providing a first line assessment in the physician’s absence; and Feeling of guilt, e.g. family members wish to participate in decisions regarding direction of care and treatment limits, and need guidance in the decisions. CONCLUSION: KEY POINTS: Knowledge on advance care planning (ACP) in a nursing home (NH) context from the perspective of family members is limited. Role of the nurse in ACP is seen as central, whereas physician involvement is often perceived to be lacking. Significance of small details, perceive to symbolize staff competence and respect for patient autonomy. To limit family members’ feeling of guilt, communicating end-of-life issues is important in order to align ACP with patient preferences.