Advance care planning and dying in nursing homes in Flanders, Belgium: a nationwide survey

Abstract

Context: In Belgium, data on actual advance care planning (ACP) in nursing homes (NHs) are scarce.

Objectives: To investigate the prevalence and characteristics of documented advance directives and physicians' orders for end-of-life care in NHs, and the authorization of a legal representative in relation to the residents' demographic and clinical characteristics and care received.

Methods: This was a retrospective cross-sectional study, including all NH residents deceased during September and October 2006 in all 594 NHs in Flanders, Belgium. Structured mail questionnaires about the resident's characteristics, hospital transfers, palliative care delivery, ACPs, and authorization of legal representatives were completed via the NH administrators and nurses involved in the care of the resident.

Results: Administrators of 318 NHs (53.5%) reported 1303 deaths. Nurses provided information about 1240 (95.2%) of these deaths. At the end of life, NH residents often had dementia (65.2%) and were severely dependent (76.1%). Almost half (43.1%) had at least one hospital transfer during the last three months of life and two-thirds received palliative care. Half had an ACP, predominantly a physician's order and less often an advance directive. Having advance directives or physician's orders was associated with receiving palliative care. Residents with a physician's order more often died in the NH. Nine percent had an authorized legal representative.

Conclusion: Prevalence of ACPs and formal authorization of a legal representative was low among the deceased NH residents in Flanders, Belgium. There was a higher prevalence of physicians' orders, often established after the resident had lost capacity. Initiatives should be developed to stimulate more advance discussion on care options and making end-of-life decision with the residents while they retain capacity.