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advance directive, end of life, chronic illness, grounded theory, healthcare proxy



  1. Jezewski, Mary Ann PhD, RN, FAAN
  2. Meeker, Mary Ann DNS, RN


The purpose of this study was to investigate end-of-life decision making from the perspective of people with chronic illness concerning the completion of advance directives (ADs), the meaning of ADs for them, and their experiences with, attitudes toward, and perceived needs related to ADs. The sample included 76 people with varying chronic illnesses, recruited from 16 different support groups representing 10 different chronic illnesses. Data were collected via 23 individual interviews and nine focus groups. The findings consisted of a Basic Social Process, Constituting AD, which comprised four major categories: learning about ADs, interacting with the healthcare system, barriers related to AD completion, and triggering stiles. The findings illustrated that people with chronic illnesses do not have a good understanding of ADs. Healthcare proxy was a mechanism that was easier to understand than living wills. Future intervention studies should focus on mechanisms to help individuals understand and complete ADs in a way that does not depend on a healthcare provider initiating the process.