Effective communication between health-care providers, patients and their families is a key aspect of the discussion surrounding a patient’s goals of care. One crucial part of this process is reaching a shared understanding of how the patient views their own quality of life. The objective of this study was to characterize factors patients and family members identify when discussing quality of life as it pertains to defining their own goals of care. This study was conducted as a part of a larger effort to design decision support tools built for streamlining these conversations in a way that maximizes the patient autonomy.
We performed a qualitative study of 22 hospitalized patients with chronic illness or their surrogate decision makers. These patients were selected from a range of medical units including multiple general medical inpatient units, a specialized hematology/oncology unit, and two medical intensive care units. Participants underwent an in-depth, semi-structured interview that was conducted with the aid of an interview guide. Development of the guide was based off literature review, clinical observations, and expert opinion. All interviews were conducted at two hospitals within the same academic medical center. Completed interviews were transcribed and coded. Responses were compiled into a list a factors that characterized patient’s perceptions of quality of life in the context of defining their goals of care. Data saturation was achieved when no new factors were identified.
Six factors were identified as important to patients and family members when goals of care; personal relationships, mental independence, physical independence, improving/stabilizing health, comfort, and work/purpose. The most common responses were personal relationships (31.6%), mental independence (15.8%), work/purpose (10.5%), improve/stabilize health (10.5%), and physical independence (10.5%). It should be noted that 15.8% of patients or their surrogates were not able to identify any factors that defined their quality of life.
We identified serval factors that patients and their families use to define their quality of life when discussing goals of care. These factors represent an important component of any goals of care conversation. They help providers and patients come to a shared understanding of why goals of care exist rather than stopping at what are those goals.