Thesis (Ph.D.)--University of Rochester. School of Nursing. Dept. of Nursing and Health Science, 2020.
Purpose: Uncertainty is unavoidable and can be distressing to patients, yet little is known about (a) the frequency and domains of uncertainty expressed by patients with advanced cancer when communicating with a palliative care team or (b) whether that uncertainty changes over the cancer trajectory. Goals of care conversations may be rich sources of uncertainty. Therefore, the aims of this dissertation are to (a) provide an analysis and clarification of the concept of goals of care, (b) identify the frequency, distribution, and domains of uncertainty expressed by patients with advanced cancer in their communication with the palliative care team using Han’s taxonomy of uncertainty, and (c) describe the magnitude and precision of the association between types of
expressed patient uncertainty and patients’ self-rated prognosis. Methods: This secondary analysis describes the frequency and distribution of patients’ uncertainty expressions. I calculated 95% confidence intervals for these estimates and stratified them by patient demographics. I then described the magnitude and precision of the association between domains of patient-expressed uncertainty and patients’ self-rated prognosis. Results: A total of 200 audio recorded palliative care consultations with hospitalized patients with advanced cancer were analyzed. The sample was approximately half male (52%), 61.2 years old on average (SD = 13.1), representative of the referral population’s distribution of White (78.5%), African American (13.1%), and Hispanic or Latino (9.5%) racial/ethnic identities. Around twothirds (68%) had less education than a bachelor’s degree, roughly one-third (34%) felt completely financially secure, and most (74.5%) identified as religious. Uncertainty was highly prevalent across all domains of uncertainty (scientific, practical, personal, psychosocial, and existential).
Patients expressed scientific uncertainty most frequently (92.5%), followed by practical (82.5%) personal (74.5%), practical (71.5%), and existential (47.5%) uncertainty. Uncertainty followed this same order of prevalence when stratified by groups based on demographics and self-rated prognosis. No relationship emerged between patient-expressed domains of uncertainty and patients’ self-rated prognosis. Conclusion: Uncertainty is a pervasive element of palliative care conversations. Although scientific uncertainty was the most frequently expressed domain of uncertainty, patients expressed substantial practical and personal uncertainty as well. Management strategies to help alleviate uncertainty-related suffering in this population are paramount.