[Advance care planning for the end of life: How prepared are homes for adults with disabilities in Bavaria?]

Abstract

Introduction: Autonomy at the end of life is associated with the ability to make self-determined decisions. The heterogeneous field of inpatient integration assistance poses particular challenges in this context. Advance care planning (ACP) is now available to people with disabilities. Nevertheless, little is known about the institution-related needs and the current status with regard to ACP in integration assistance homes.

Methods: A survey of all 850 inpatient homes providing integration assistance for adults in Bavaria was carried out. The survey was conducted online and addressed to home managers. In total, data of 96 homes (11.3% of all homes) was included in the descriptive and categorizing text analysis.

Results: Residents die in 60% of the homes surveyed. 73.7% of the homes offer ACP for their residents, with 62.9% of these homes using standardized procedures. One of the reasons given by the participants for not offering ACP is a better qualification of employees. Barriers include the residents' lack of ability to participate in ACP meetings or relatives' reluctant attitude towards ACP.

Discussion: End-of-life care is a relevant topic for inpatient homes providing integration assistance. Accordingly, ACP is already being addressed by a large proportion of homes. Here, special needs of residents due to existing impairments can pose challenges.

Conclusion: The study enables us to draw conclusions about the optimization of ACP from the perspective of care homes, which relate to structural (e.g., adaptation of existing concepts), personal (e.g., qualification) and emotional (e.g., de-tabooization) aspects.