Background Patients living in our nursing home facility suffer from severe intellectual disabilities (SID), need a widespread support, have total legal incapacitation and their health status is characterised by progressive ageing and high complexity needs. So end-of-life related decisions are a common concern in a context where there’s a lack of evidence about advance care planning (ACP).
Aim Develop and implement a fair and systematic ACP process to promote best practices in SID population.
Methods After reviewing the literature, a multidisciplinary team (manager, senior nurse, social worker and family physicians) developed a structured consensus based on formal national ACP recommendations and subsequently validated by external experts.
The resulting procedure describes best practices in interpersonal communication strategies, professional roles and ACP contents to be discussed between legal patient representatives and professional team.
Results Since November 2013, ACP has been launched in 20% of patients living in our centre, prioritising those with advanced conditions and limited life prognosis.
All directives are placed in their electronic clinical charts as well in national health information platforms, accessible to all Catalonian health care settings.
Systematic feedback from family surveys, centre and related health professionals is positive.
Our ACP procedure is now the gold standard for SID centres in Catalonia.
Discussion/conclusion ACP in persons having SID is feasible and useful for end-of-life decisions, and able to fit values, preferences and satisfaction of patient’s relatives and legal representatives, as well to promote better clinical decisions.
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