Advance care planning after hospital discharge: qualitative analysis of facilitators and barriers from patient interviews

Abstract

BackgroundPatients who engage in Advance Care Planning (ACP) are more likely to get care consistent with their values. We sought to determine the barriers and facilitators to ACP engagement after discharge from hospital.MethodsPrior to discharge from hospital eligible patients received a standardized conversation about prognosis and ACP. Each patient was given an ACP workbook and asked to complete it over the following four weeks. We included frail elderly patients with a high risk of death admitted to general internal medicine wards at a tertiary care academic teaching hospital. Four weeks after discharge we conducted semi-structured interviews with patients. Interviews were transcribed, coded and analysed with thematic analysis. Themes were categorized according to the theoretical domains framework.ResultsWe performed 17 interviews. All Theoretical Domain Framework components except for Social/Professional Identity and Behavioral Regulation were identified in our data. Poor knowledge about ACP and physician communication skills were barriers partially addressed by our intervention. Some patients found it difficult to discuss ACP during an acute illness. For others acute illness made ACP discussions more relevant. Uncertainty about future health motivated some participants to engage in ACP while others found that ACP discussions prevented them from living in the moment and stripped them of hope that better days were ahead.ConclusionsFor some patients acute illness resulting in admission to hospital can be an opportunity to engage in ACP conversations but for others ACP discussions are antithetical to the goals of hospital care.Electronic supplementary materialThe online version of this article (10.1186/s12904-018-0379-0) contains supplementary material, which is available to authorized users.

Advance care plans and hospitalized frail older adults: a systematic review

“…One high-quality interview study asked patients about their experiences of ACP initiated at the end of an acute hospital admission 33. Some patients felt this was an appropriate time to discuss ACP and that the context reinforced the importance of planning for the future.…”

“…Patients describe that good physician communication skills, including demonstrating they have time for ACP, and adequate ACP information are important facilitators 33. Absence of privacy is a barrier to ACP in hospital 33.…”

“…Patients describe that good physician communication skills, including demonstrating they have time for ACP, and adequate ACP information are important facilitators 33. Absence of privacy is a barrier to ACP in hospital 33. The use of an interpreter is an important facilitator in patients from a non-English-speaking background 40.…”

“…For 58% this was attributed to ‘various capacity constraints’ including poor health literacy, cultural taboos, limited English and patient illness 37. A qualitative study of patient’s experiences of ACP in hospital found significant variation in patients’ attitudes to ACP33 (see question 2). The likelihood of achieving completed ACP documentation during an inpatient admission correlates strongly with the presence of family members at the ACP discussion 28…”

“…Three studies identified lack of decision-making capacity as a barrier for 42%–57% of older inpatients 28 30 37. Notably, only one study followed up patients after discharge prior to death and reported ‘numerous participants did not remember the conversation about ACP while in hospital’, while other participants remembered the conversation but felt too sick to engage properly with the discussion at the time 33. All of the patients in this study had been assessed to have capacity at the time of ACP in hospital.…”