Advance care planning and physician orders in nursing home residents with dementia: a nationwide retrospective study among professional caregivers and relatives.

CONTEXT: Advance care planning (ACP) is key to good palliative care for nursing home (NH) residents with dementia.

OBJECTIVES: We examined the extent to which the family physicians (FPs), nurses, and the relative most involved in the resident's care are informed about ACP, written advance directives, and FP treatment orders (FP-orders) for NH residents dying with dementia. We also examined the congruence among FP, nurse, and relative regarding the content of ACP.

METHODS: This was a representative nationwide post-mortem study (2010) in Flanders, Belgium, using random cluster sampling. In selected NHs, all deaths of residents with dementia in a three month period were reported. A structured questionnaire was completed by the FP, the nurse, and the patient's relative.

RESULTS: We identified 205 deceased residents with dementia in 69 NHs. Residents expressed their wishes regarding end-of-life care in 11.8% of cases according to the FP. The FP and nurse spoke with the resident in 22.0% and 9.7% of cases, respectively, and with the relative in 70.6% and 59.5%, respectively. An advance directive was present in 9.0%, 13.6%, and 18.4% of the cases according to the FP, nurse, and the relative, respectively. The FP-orders were present in 77.3% according to the FP, and discussed with the resident in 13.0% and with the relative in 79.3%. Congruence was fair (FP-nurse) on the documentation of FP-orders (k=0.26), and poor to slight on the presence of an advance directive (FP-relative, k=0.03; nurse-relative, k=-0.05; FP-nurse k=0.12).

CONCLUSION: Communication regarding care is rarely patient driven and more often professional caregiver or family driven. The level of congruence between professional caregivers and relatives is low.