Abstract
Dear Editor:
Thank you for the opportunity to respond to the letter to the editor regarding our qualitative study, which explores how interrelated barriers impacting trust may contribute to hospice enrollment disparities. 1 In their letter, writers raise several concerns, which we address below. Our study is a secondary analysis of a dataset that broadly explored hospice enrollment barriers among diverse patient populations by interviewing a variety of stakeholders. The parent study 2 identified systems/policy, organizational, provider, and patient/family level barriers. Rich data regarding trust at the patient/family level, inadequately explored in the parent study, prompted this study. We embarked on this project with the focused goal of examining the complexities of trust related to hospice enrollment from various perspectives.
Concern 1: “The focus of this study was to examine barriers to trust among patients and their families; however, only three of the 22 participants were family members of hospice patients and there were no hospice patients included at all.” Given that the average U.S. hospice length of stay is only days and that ethnic/racial minority patients underutilize hospice, we anticipated that recruiting patients or families, often in distress during their transition to hospice, would be extremely challenging.
We are grateful that three family members agreed to be interviewed; however, all potential patient participants were too sick/frail to participate. We discuss this in our limitation section. Anticipating this barrier, we designed our study to ask all participants about their experiences as family/community members of patients at end of life, yielding deep insights into the family perspective.
Concern 2: “The majority (86%) of participants were healthcare providers of various disciplines.”—Three family members, two social workers, and three administrators were not health care providers. Therefore, only 64% were health care providers. This group included chaplains, social workers, and a nurse's aide—voices rarely heard in studies on trust in hospice settings. They shared both professional and personal reflections, thus contributing family/community insights.
Concern 3: “40% of participants reported their race as non-Hispanic White, with limited representation from persons of other races” and “patients and family members from racially and ethnically minoritized groups were underrepresented”—In previous studies regarding trust in hospice/palliative settings, 74%–94% of participants were White. Knowing this, we purposely oversampled ethnic/racial minority stakeholders to make sure their voices were heard. The majority (60%) of participants in our study were from minority groups.
As above, all participants were asked about their personal experiences as family/community members of dying patients, thus contributing diverse family/community perspectives. The purpose of the study was to gain broad insights from multiple perspectives; therefore, this participant mix was appropriate for this particular study's goals.
Concern 4: “Theoretical model … At best, the model is incomplete … and at worse, it seems to blame patients.”—We conducted a grounded theory qualitative study. As such, axial and selective coding analysis clarifies relationships between themes and the theory developed is grounded in the study data. The theoretical model is, by definition, limited to our focused study question regarding trust—it cannot be broader, based on literature review, opinion, or speculation. We are concerned that exploring barriers to trust is being equated with blaming patients. All potential solutions we provide put the responsibility to decrease barriers on health care providers and organizations, not on patients.
The letter writers' proposed solutions are already listed in the conclusion section of our article. We firmly believe that understanding is the first step toward physicians and organizations eliminating systemic barriers to care for our diverse patient populations.
Concern 5: The letter ends with emphasizing systemic racism and centering on the margins, including “It is time to move beyond research that examines patient mistrust without calling out interpersonal and systemic racism…” We do in fact address interpersonal and systemic barriers in our study. Theme 7 covers experiences of various ethnic groups, including historical and structural harms, whereas Theme 6 covers language barriers.
Several of our team members have dedicated years to addressing systemic racism and teaching on this subject. In a recent study, conducted entirely in Spanish, our group specifically explored the needs of Latino communities regarding end-of-life care. 3 We completely agree, we need more studies like this centering on different marginalized populations. We also fully support the pressing need to address systemic racism. However, our study regarding trust had a broader goal—purposely centered “off center toward the margins”—to gain a deeper understanding of the phenomenon of trust from various perspectives, as a step toward new solutions and studies. Our analysis revealing multiple interrelated barriers to trust and levels and degrees of trust furthers our understanding of this complex phenomenon.
An issue as complex as health disparities, across a wide variety of minority populations, requires a variety of study types and solutions at many different levels. Multiple approaches and insights are needed in the quest for health equity and compassionate patient-centered care for all, especially those most marginalized in our society.
Sincerely,
Gowri Anandarajah, Meera Mennillo, Sophie Wang, Kai'olu DeFries, and Jaya Gottlieb.