Research and Scholarship

Silent Conversations: Goals of Care and End-of-Life Quality in Relapsed High-Risk Leukemia

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ABSTRACT

Background: Advanced practice providers (APPs) affect high-quality health care through leadership, evidence-based practice implementation, and quality improvement projects. When planning solutions to clinical problems, leadership must solicit APP input to promote success. Hematology patients are more likely to receive poor-quality end-of-life (EOL) care than those with solid tumors. Regardless of disease, aggressive EOL care is increasing despite evidence that it is often inconsistent with patients’ goals of care (GOC). Data regarding this phenomenon in hematology specifically is lacking. The distorted association of “end of life” with “goals of care” has “silenced” crucial goals discussions in patients with relapsed or refractory high-risk leukemia, which raises concerns for the provision of care that is inconsistent with patients’ values and preferences. Hematologists may possess certain traits and distinct barriers leading to what one might call an aversion to GOC discussions in the inpatient setting. Aims: (1) Quantify hematologists’ rate of participation in a GOC pathway initiative during two separate months. (2) Explore the hematologists’ definition of and barriers to having GOC discussions. Design: This is a mixed-methods, explanatory sequential design (follow-up explanations variant). Sample: Quantitative: Hematology inpatient admissions during two nonconsecutive months in 2021. Qualitative: Eighteen leukemia hematologists from one dedicated cancer center. Results: During the 2 months, an average of 36% of admissions met the criteria for GOC pathway initiation, 19% of those had an appropriate initiation order, and < 1% had a properly documented and billed GOC discussion. Nine hematologists responded to a SurveyMonkey poll with two questions. All nine included clinical situation and communication in their definition of GOC discussions. Time limitations and prognostic uncertainty were the two most reported barriers. Discussion: The findings demonstrate that the apprehension of hematologists to have GOC conversations is similarly seen in the APPs’ reluctance to initiate a pathway intended to lead to GOC conversations. The percentage of eligible inpatient admissions meeting the specified criteria was similar between the 2 months; however, the number of appropriate referrals and documented or billed GOC discussions was higher in the earlier month, demonstrating temporal decline. Further research inquiry is needed to explore causation of this phenomenon. 

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