Advance care planning for nursing home residents with dementia: policy vs. practice.

AIMS: The aims of this study were: to evaluate the advance care planning policy for people with dementia in nursing homes; to gain insight in the involvement of residents with dementia and their families in advance care planning, and in the relationship between the policy and the actual practice of advance care planning. BACKGROUND: Through advance care planning, nursing home residents with dementia are involved in care decisions, anticipating their reduced decision-making capacity. However, advance care planning is rarely realized for this group. Prevalence and outcomes have been researched, but hardly any research has focused on the involvement of residents/families in advance care planning. DESIGN: Observational cross-sectional study in 20 nursing homes. METHODS: The ACP audit assessed the views of the nursing homes' staff on the advance care planning policy. In addition, individual conversations were analysed with 'ACP criteria' (realization of advance care planning) and the 'OPTION' instrument (involvement of residents/families). DATA COLLECTION: June 2013-September 2013. RESULTS: Nursing homes generally met three quarters of the pre-defined criteria for advance care planning policy. In almost half of the conversations, advance care planning was explained and discussed substantively. Generally, healthcare professionals only managed to involve residents/families on a baseline skill level. There were no statistically significant correlations between policy and practice. CONCLUSION: The evaluations of the policy were promising, but the actual practice needs improvement. Future assessment of both policy and practice is recommended. Further research should focus on communication interventions for implementing advance care planning in the daily practice.

Study protocol for 'we DECide': implementation of advance care planning for nursing home residents with dementia.

AIM: To evaluate the effects of 'we DECide', an educational intervention for nursing home staff on shared decision-making in the context of advance care planning for residents with dementia. BACKGROUND: Advance care planning (preparing care choices for when persons no longer have decision-making capacity) is of utmost importance for nursing home residents with dementia, but is mostly not realized for this group. Advance care planning consists of discussing care choices and making decisions and corresponds to shared decision-making (the involvement of persons and their families in care and treatment decisions). DESIGN: This quasi-experimental pre-test-post-test study is conducted in 19 nursing homes (Belgium). Participants are nursing home staff. METHODS: 'We DECide' focuses on three crucial moments for discussing advance care planning: the time of admission, crisis situations and everyday conversations. The 'ACP-audit' assesses participants' views on the organization of advance care planning (organizational level), the 'OPTION scale' evaluates the degree of shared decision-making in individual conversations (clinical level) and the 'IFC-SDM Questionnaire' assesses participants' views on Importance, Frequency and Competence of realizing shared decision-making (clinical level). (Project funded: July 2010). DISCUSSION: The study hypothesis is that 'we DECide' results in a higher realization of shared decision-making in individual conversations on advance care planning. A better implementation of advance care planning will lead to a higher quality of end-of-life care and more person-centred care. We believe our study will be of interest to researchers and to professional nursing home caregivers and policy-makers.

Advance care planning for nursing home residents with dementia: Influence of 'we DECide' on policy and practice.

OBJECTIVES: (1) To pilot 'we DECide' in terms of influence on advance care planning policy and practice in nursing home dementia care units. (2) To investigate barriers and facilitators for implementing 'we DECide'. METHODS: This was a pre-test-post-test study in 18 nursing homes. Measurements included: compliance with best practice of advance care planning policy (ACP-audit); advance care planning practice (ACP criteria: degree to which advance care planning was discussed, and OPTION scale: degree of involvement of residents and families in conversations). RESULTS: Advance care planning policy was significantly more compliant with best practice after 'we DECide'; policy in the control group was not. Advance care planning was not discussed more frequently, nor were residents and families involved to a higher degree in conversations after 'we DECide'. Barriers to realizing advance care planning included staff's limited responsibilities; facilitators included support by management staff, and involvement of the whole organization. CONCLUSION: 'We DECide' had a positive influence on advance care planning policy. Daily practice, however, did not change. Future studies should pay more attention to long-term implementation strategies. PRACTICE IMPLICATIONS: Long-term implementation of advance care planning requires involvement of the whole organization and a continuing support system for health care professionals.