Abstract
BackgroundUncertainty has been associated with distress and poorer quality of life in patients with advanced cancer. Prior studies have focused on prognostic uncertainty; little is known about other types of uncertainty that patients and family members experience when discussing goals of care. Understanding the types of uncertainty expressed and differences between Black and White patients can inform the development of uncertainty management interventions.MethodsThis study sought to characterize the types of uncertainty expressed by Black and White patients and family members within the context of information needs during inpatient goals-of-care discussions. We performed a secondary analysis of transcripts from 62 recorded goals-of-care discussions that occurred between 2012 and 2014 at an urban, academic medical center in the United States. We applied an adapted taxonomy of uncertainty to data coded as describing information needs and used an inductive qualitative analysis method to analyze the discussions. We report the types of uncertainty expressed in these discussions.ResultsFifty discussions included patient or family expressions of information needs. Of these, 40 discussions (n=16 Black and n=24 White) included statements of uncertainty. Black and White patients and families most frequently expressed uncertainty related to processes and structures of care (system-centered uncertainty) and to treatment (scientific uncertainty). Statements of prognostic uncertainty focused on quantitative information among Whites and on qualitative information and expectations for the future among Blacks.ConclusionsBlack and White patients and families frequently expressed system-centered uncertainty, suggesting this may be an important target for intervention. Addressing other sources of uncertainty, such as prognostic uncertainty, may need more tailored approaches.
Highlights
Uncertainty has been associated with distress and poorer quality of life in patients with advanced cancer
Members were present in 74% (n = 14) of discussions with Black patients and 68% (n = 21) of discussions with White patients
Given findings that prognostic communication occurs less frequently in palliative care consultations with Black patients compared to Whites, [28] our findings suggest there may be opportunities for clinicians to better address prognostic uncertainty for Black patients and their families in the context of how to prepare for end of life
Summary
Uncertainty has been associated with distress and poorer quality of life in patients with advanced cancer. Prior studies have focused on prognostic uncertainty; little is known about other types of uncertainty that patients and family members experience when discussing goals of care. A key challenge that patients, families, and clinicians face in discussing goals of care is addressing the uncertainty that comes with illness [13, 14]. This uncertainty may be described in various ways, including as a stressor, a perceived loss of control, and a state of doubt or not knowing [15]. Research on other types of uncertainty, which may be important sources of distress for patients with advanced cancer, remains limited
Sign-in/Register to view highlights & summary Talk to us
Join us for a 30 min session where you can share your feedback and ask us any queries you have
Schedule a callDisclaimer: All third-party content on this website/platform is and will remain the property of their respective owners and is provided on "as is" basis without any warranties, express or implied. Use of third-party content does not indicate any affiliation, sponsorship with or endorsement by them. Any references to third-party content is to identify the corresponding services and shall be considered fair use under The CopyrightLaw.
