The Disease Arc: Exploring Disease, Disease Progression, and the End of a Journey with Patients and Families

This chapter discusses the Disease Arc, the goal of which is to investigate patient and family experience and understanding of disease and provide education about the patient’s disease, including the disease trajectory the patient is following, where the patient is in their journey, what to expect in the future, and whether the patient meets hospice criteria. The use of language, such as the word “journey,” is meant to introduce the idea of a progressive illness with an expected endpoint while still respecting the patient and family’s beliefs. The chapter concludes with guidance on how to adapt the conversation for individuals who do not yet meet hospice criteria.