What Counts as a Surrogate Decision?

When patients lose decision-making capacity, others must make surrogate decisions on their behalf. What counts as a surrogate decision might seem self-evident. But as clinician-researchers in the field of advance care planning, we have found that it is not always so clear-cut. In this paper, we describe how and why this is a matter of concern, a novel approach for assessing whether a surrogate decision occurred, and findings from this assessment.

Collecting patient preference information using a Clinical Data Research Network: demonstrating feasibility with idiopathic pulmonary fibrosis.

Purpose: Rare diseases present challenges for accessing patient populations to conduct surveys. Clinical Data Research Networks (CDRNs) offer an opportunity to overcome those challenges by providing infrastructure for accessing patients and sharing data. This study aims to demonstrate the feasibility of collecting patient preference information for a rare disease in a CDRN, using idiopathic pulmonary fibrosis as proof of concept. Patients and methods: Utilizing a cohort of idiopathic pulmonary fibrosis (IPF) patients across a CDRN, a discrete choice experiment was administered via electronic and paper methods to collect patient preference information about benefits and risks of two therapeutic options. Survey data were augmented with data from electronic health records and patient-reported outcome surveys. Results: Thirty-three patients completed the preference experiment. The amount of choice attributable to a benefit of slowing of decline in lung function was 36%. Improving efficacy in terms of lung function was 2.16 times as important as improving efficacy in terms of shortness of breath. In terms of side effects, decreasing risk of gastrointestinal problems was 2.6 times as important as decreasing risk of sun sensitivity and 2.4 times as important as decreasing risk of liver injury. In terms of benefit-risk trade-offs, improving efficacy in terms of lung function was 1.6 times as important as decreasing risk of gastrointestinal problems. Conclusion: This study used IPF as a proof of concept to demonstrate the feasibility of collecting patient preference information in a CDRN. The network was advantageous to the study of patient preferences. Future research should continue to explore pathways for the collection and use of patient preference information across networks. The power of consolidated collection efforts may lead to the ability to use preference data to inform decision-making at the regional, specialty, or individual encounter level.

High satisfaction and low decisional conflict with advance care planning among chronically ill patients with advanced chronic obstructive pulmonary disease or heart failure using an online decision aid: A pilot study.

OBJECTIVE: Many patients with chronic illnesses report a desire for increased involvement in medical decision-making. This pilot study aimed to explore how patients with exacerbation-prone disease trajectories such as advanced heart failure or chronic obstructive pulmonary disease experience advance care planning using an online decision aid and to compare whether patients with different types of exacerbation-prone illnesses had varied experiences using the tool. METHODS: Pre-intervention questionnaires measured advance care planning knowledge. Post-intervention questionnaires measured: (1) advance care planning knowledge; (2) satisfaction with tool; (3) decisional conflict; and (4) accuracy of the resultant advance directive. Comparisons were made between patients with heart failure and chronic obstructive pulmonary disease. RESULTS: Over 90% of the patients with heart failure (n = 24) or chronic obstructive pulmonary disease (n = 25) reported being "satisfied" or "highly satisfied" with the tool across all satisfaction domains; over 90% of participants rated the resultant advance directive as "very accurate." Participants reported low decisional conflict. Advance care planning knowledge scores rose by 18% (p < 0.001) post-intervention. There were no significant differences between participants with heart failure and chronic obstructive pulmonary disease. DISCUSSION: Patients with advanced heart failure and chronic obstructive pulmonary disease were highly satisfied after using an online advance care planning decision aid and had increased knowledge of advance care planning. This tool can be a useful resource for time-constrained clinicians whose patients wish to engage in advance care planning.