Lisa Kastbom1,2, Marit Karlsson3,4, Magnus Falk1,5, Anna Milberg1,6. 1. Department of Health, Medicine and Caring Sciences, Linköping University, Linköping, Sweden. 2. Primary Health Care Center in Ljungsbro, Linköping University, Linköping, Sweden. 3. Department of Advanced Home Care in Linköping, Linköping University, Linköping, Sweden. 4. Department of Biomedical and Clinical Sciences, Linköping University, Linköping, Sweden. 5. Primary Health Care Center in Kärna, Linköping University, Linköping, Sweden. 6. Department of Advanced Home Care in Norrköping, Linköping University, Linköping, Sweden.
Abstract
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: 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 patient's 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. 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.
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: 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 patient's 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. 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.
Entities:
Keywords:
Advance care planning; education; family member; family practice; nursing homes; qualitative research
Authors: Lisa Kastbom; Magnus Falk; Marit Karlsson; Anders Tengblad; Anna Milberg Journal: Scand J Prim Health Care Date: 2022-02-16 Impact factor: 3.147