(321) Goals of Care and Advanced Care Planning in Cystic Fibrosis: A Quality Improvement Journey

Background: Cystic fibrosis (CF) is a progressive disease with significant symptom burden and limited life expectancy. Emerging therapies and the hope for a cure must be balanced with the possibility of disease progression, complex treatment decisions, and end of life. Given that Advanced Care Planning (ACP) conversations and creation of Advance Directive (AD) forms are not mandated or standardized aspects of care in CF programs, many patients with CF miss out on opportunities to share their wishes for treatment if faced with serious illness or end of life. One survey found that 80% of respondents would want to talk about their wishes for treatment at end of life but only 7% had done so. Additionally, 82% of respondents said it’s important to put their wishes in writing; only 23% had done so. In 2020, only 9% of patients at the Stanford Health Care (SHC) Adult CF Clinic had completed an AD. While many SHC CF patients had identified a surrogate decision maker for health care (as indicated in social work documentation), ACP conversations were not necessarily expected or welcomed. The authors believed that if these conversations and documentation were normalized as part of an annual CF clinic visit, patients would feel less fear or awkwardness, and would be more likely to discuss and create a plan for navigating serious illness or end of life.

Methods: Authors aimed to standardize ACP conversations in the Stanford Adult CF Center to include initial ACP conversations, documentation of patients’ goals of care, and creation of legal ACP documents, such as the AD and Physician Orders for Life Sustaining Treatment (POLST) form. Through these conversations, authors aimed to improve patients’ knowledge and preparedness for eventual disease progression and facilitate delivery of care that is tailored to patients’ individual values. Throughout 2021, authors conducted ACP discussions with all patients, regardless of health status and provided ACP resources for interested patients. These discussions and any further interventions were documented in the health record. Improvements from baseline data were measured.

Results: Documentation of a surrogate decision maker for healthcare increased from 55% in 2020 to 93% in 2021. ADs on file in the chart increased from 9% in 2020 to 10% in 2021. Seventy-six percent of patients received an annual ACP discussion, and 58% expressed interest in and were provided with ACP resources. Eight percent of patients declined to receive ACP resources. See Figure 1 for results.

Conclusions: CF patients were generally open to discussing ACP in the context of an annual visit. Very few followed through with completing a legal AD, with witness or notary requirement being a significant barrier, per patient report. Discussions uncovered some patients had already completed an AD and just not provided SHC with a copy. Nearly all patients who engaged in ACP conversation were comfortable identifying a surrogate decision maker for healthcare which was noted in the chart. Through this project, the authors created a new standard of ACP conversation which is now woven into the annual SW assessment. Increasing documented ADs is a complex goal that may benefit from different strategies, including more input from patients around barriers and/or more physician or interdisciplinary team involvement.

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