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. patients preferences explicitly communicated, but also implicitly conveyed. In some cases family members had a sense of the patients 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 physicians 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 Our study stresses the significance of staff involving the patient and family members in the advance care planning process in nursing homes, thereby adapting the care in line with patients wishes, and for the patient to share these preferences with family members. Education in communication related to the subject may be important to shape advance care planning