Implementation of an advance directive focus in a Chronic Multi-Organ Rare Disease Clinic.

Background: Education about an advance directive is frequently not addressed in the outpatient, ambulatory care setting. The objective of this study was to identify patients that do not have an advance directive in a Chronic Multi-Organ Rare Disease Clinic model, and define the role of a social worker in providing advance care planning (ACP).

Methods: The Chronic Multi-Organ Rare Disease Clinic in-corporates a multi-disciplinary team to provide outpatient care to over 600 patients. A review of advance directives filed in the electronic health record (EHR) prior to hiring a clinic social worker was examined in this high risk population.

Results: A total of 15 patients (2%) of this patient population were identified as having a completed, active advance directive filed with their EHR prior to hiring a clinic social worker. The clinic social worker began ACP discussions and inquiries about the status of patient advance directives with a total of 162 patients during September 2016-April 2017. Of these 162 patients, 14 patients (8.6%) submitted their completed advance directives for filing with their EHR after advanced care discussions were initiated by the clinic social worker. Two patients who completed an advance directive, died during this 7-month time period. Only three patients declined to complete advance directives during this same time period.

Conclusions: Patient-centered care must incorporate ACP. A clinic social worker is an effective member of a multi-disciplinary team and can incorporate education about advance directives in order to improve health care quality.