Challenges in providing end-of-life care consistent with documented patient preferences.

Abstract

Providing end-of-life care consistent with patient preferences is a major goal for advance care planning (ACP) programs. Despite the promise, many trials have failed to show that ACP improves patients' likelihood of receiving end-of-life care consistent with preferences. The reasons and challenges to facilitating EOL care consistent with patients' documented ACP preferences remain unclear. Using data from Singapore's national ACP program evaluation, we aimed to understand health care professionals' (HCPs) perceived challenges in facilitating end-of-life care consistent with patients' documented ACP preferences. We conducted 21 focus group discussions and 1 in-depth interview with HCPs trained in ACP facilitation and advocacy and involved in national ACP program implementation within public hospitals, public primary care clinics and nursing homes in Singapore. Data collection was stratified based on HCPs' role within the ACP program (ACP leads/champions, ACP facilitators, nursing home heads/ACP administrative staff) and type of institution (hospital, primary care clinic and nursing home). Each discussion included 1 to 8 participants. Discussions were audio recorded, transcribed verbatim and checked for accuracy. We analysed the data using thematic analysis framework in Nvivo 11. A total of 107 participants attended one of the discussions of which more than a third (35%) were physicians. We conceptualized five themes describing the challenges in implementing end-of-life care consistent with patients' documented ACP preferences: (I) conflict between honouring preference for comfort care and extending life; (II) ACP not reflecting patients' changing preferences or medical condition; (III) lack of health system resources to support and honour patient preferences; (IV) barriers to retrieval of ACP documents; and (V) rigidity of ACP documentation. Although providing end-of-life care consistent with preferences may not always be feasible, future ACP programs should involve physicians and families for ongoing conversations, frequently update patients' ACP documents, involve clear and well-resourced plans for implementing patients' preferences, and incorporate flexible electronic systems to capture ongoing ACP conversations.