Development of a Decision Aid for Patients and Families Considering Hospice

Abstract

Background: Hospice is underutilized. Miscommunication, decisional complexity, and misunderstanding around engaging hospice may contribute. Shared decision making (SDM), aided by patient decision aids (PtDAs), can improve knowledge and decision quality. Currently, there are no freely available hospice-specific PtDA to facilitate conversions between patients and providers about hospice care. Objective: To develop a theory-based and unbiased hospice specific PtDA. Design: Guided by the Ottawa Decision Support Framework and International Patient Decision Aid Standards, we used a theory-driven, eight-step, iterative, user-centered approach with multistakeholder input to develop a hospice-specific PtDA for anyone facing end-of-life decisions. Subjects: Feedback was obtained from a 10-member Patient Advisory Panel composed of lay patient advisors; focus groups of hospice providers, family caregivers, and patients; and the Palliative Care Research Group at University of Colorado Hospital consisting of palliative care physicians, midlevel providers, nurses, social workers, chaplains, and researchers. Results: There are many challenges in developing an unbiased hospice decision aid, including (1) balancing the provision of education (eligibility, payment) with decisional support, (2) clarifying values and incorporating emotion, (3) ideally representing the potential downsides of hospice, and (4) adequately capturing and describing care alternatives to hospice. Within this context, we developed a 12-page article and 17-minute video PtDAs. The PtDA openly acknowledges the emotional complexity of the decision and incorporates values clarification techniques to help decision makers reflect and evaluate their goals and preferences for end-of-life care. Conclusions: Hospice decision making is complex and emotional, demanding high-quality SDM aided by a formal PtDA. This work resulted in a freely available article and video PtDA for patients considering hospice. The effectiveness and implementation of these tools will be studied in future research. Clinical Trials Registration (NCT03794700 & NCT04458090).

Keywords: decision aids; end-of-life care; hospice; palliative care; shared decision making.

Conflict of interest statement

No competing financial interests exist.

Figures

FIG. 1.

Decision aid development process. Describes the iterative development process.

FIG. 2.

Hospice eligibility. The top is a screen shot from the article PtDA about eligibility. The bottom is a screen shot from the video PtDA about hospice eligibility. PtDA, patient decision aid.

FIG. 3.

Weighing options. The top is a screen shot from the article PtDA about timing of hospice enrollment. The bottom is a screen shot from the video PtDA about weighing benefits and drawbacks of hospice.

FIG. 4.

Patient narratives from the article PtDA. Screenshot of patient narratives from the article PtDA.

FIG. 5.

Values clarification. The top is a screenshot from the video PtDA of a hospice provider and informal family caregiver. Person on the left is a hospice provider and person on right is an informal family caregiver. The bottom is a screen shot from the video PtDA of the values clarification questions.