Development of a Decision Aid for Patients With Advanced Heart Failure Considering a Destination Therapy Left Ventricular Assist Device

Abstract

Objectives: This study aimed to create decision aids (DAs) for patients considering a destination therapy left ventricular assist device (DT LVAD).

Background: Insertion of a DT LVAD is a major decision for patients with end-stage heart failure. Patients facing decisions with complex trade-offs may benefit from high-quality decision support resources.

Methods: In accordance with the International Patient Decision Aid Standards guidelines and based on a needs assessment with stakeholders, we developed drafts of paper and video DAs. With input from patients, caregivers, and clinicians through alpha testing, we iteratively modified the DAs to ensure acceptability.

Results: We conducted semistructured interviews with 24 patients, 20 caregivers, and 24 clinicians to assess readability, bias, and usability of the DAs. Stakeholder feedback allowed us to integrate aspects critical to decision making around highly invasive therapies for life-threatening diseases, including addressing emotion and fear of death, using gain frames for all options that focus on living, highlighting palliative and hospice care, integrating the caregiver role, and using a range of balanced testimonials. After 19 iterative versions of the paper DA and 4 versions of the video DA, final materials were made available for wider use.

Conclusions: We developed the first International Patient Decision Aid Standards-level DAs for DT LVAD. Given the extreme nature of this medical decision, we augmented traditional DA characteristics with nontraditional DA features to address a spectrum of cognitive, automatic, and emotional aspects of end-of-life decision making. Not only are the DAs important tools for those confronting end-stage heart failure, but the lessons learned will likely inform decision support for other invasive therapies.

Keywords: decision aid; destination therapy; heart failure; heart-assist devices; patient-centered care; shared decision making.

Figure 1. Project Overview

Summary of the methods and main results of the paper.

Figure 2. Paper Decision Aid Excerpt

Addressing emotions and fear on first and second pages.

Figure 3. Paper Decision Aid Excerpt

Page showing options, presenting probabilities, using statistics, and highlighting uncertainty. Due to the majority of people imminently dying without LVAD, this option required unique framing regarding benefits, risks, and burdens.