Experiences of Serious Illness Conversations (SICs) to Drive Health Equity in Serious Illness Care

Résumé 0

Project Overview The primary purpose of this study is to describe the experience with and perception about serious illness conversations (SICs) from the perspective of patients from underserved minoritized groups. Secondary goal is to identify structure and contents that make SICs accessible and acceptable by patients from underserved minoritized groups. Evidence demonstrates that SICs, in which clinicians and patients discuss patients’ goals and values, lead to better patient-centered care. However, we also know that both patient participation and effectiveness of SIC may vary dependent on the patient’s background (e.g. race/ethnicity, level of education and health literacy, socioeconomic status, living conditions, ability, or sexual orientation). Variations in patients’ backgrounds may not only hinder their participation in SICs, but also preclude the patients from receiving treatment that aligns with her/his preferences – both of which may result in health inequities. In addition, most patients who have participated in SICs studies have been non-Hispanic White, and effectiveness of the current SIC approach for minority populations is not known. The disproportional impact of COVID-19 pandemic on minority groups raises the urgency to reevaluate and strengthen the SIC approach to engage minority vulnerable population in advance care planning. Therefore, it is critical to examine SIC experiences in depth from the perspectives of patients in this population and gain understanding about the best ways to have SICs with this population, including healthcare professionals best positioned to have SICs with them. Data Collection Overview Four primary care clinics and one nursing home which serve diverse inner-city communities in the Pacific Northwest were the study recruitment sites. Clinicians in these sites were asked to identify patients who met our criteria and refer interested patients to the researchers. Researchers contacted the patients by telephone, described the study, confirmed that inclusion criteria were met, and obtained verbal consent for an interview. The data collection method was individual interviews with patients living with a serious illness, receiving care in the study clinics and the nursing home, and are from underserved minority groups and/or vulnerable populations. Of 49 patients referred to the study and contacted, 30 agreed to participate the interview. The PI, Seiko Izumi, conducted all but one of the interviews; Ellen Garcia (MSN, RN, PhD student at Oregon Health & Science University) was a research assistant for this project and conducted interview with participant ID24. For summary participant characteristics, see Table 1 in the Data Narrative. Average interview time was 38 minutes (range 19-89 minutes). Interviews were conducted either in-person, via telephone, or video call (WebEx software) based on the participant’s preference. Interviews were audio-recorded with participants’ permission and later were transcribed verbatim by a HIPAA-compliant transcription. De-identified interview transcripts were imported into ATLAS.ti (qualitative data management and analysis software) for analysis. All participants who gave consent to participate in the interview, also agreed to have their data deposited for research re-use. Data Analysis Three investigators (Izumi, Garcia and Andrew Kualaau, PhD student at Oregon Health & Science University) read the transcripts independently and coded texts to capture the experiences of advance care planning. The investigators met regularly to discuss their interpretation of data to reach consensus describing participants’ experiences. External experts in the field of advance care planning with marginalized population reviewed the results of the preliminary analysis and provided feedback to enhance rigor, transferability, and authenticity of our findings. Selection and Organization of Shared Data This data project consists of 30 individual interview transcripts, the consent script and interview guide used, a demographic characteristics inventory, a coding groups report, as well as a Data Narrative and an administrative README file. (A handful of sequential numbers in the transcripts – IDs: 17,18,19, 33,34 – do not appear, because they were assigned to referred potential interview candidates, who did not meet the study criteria.) Other Contributors Justine Sanders (MD, McGill University) was an expert consult for this study. Renee Henrique (Quality Specialist Providence Health) and Linda DeSitter (Providence Health Director of Palliative Care) served as additional project members.