Hospital-Based Survey of Patients' and Families' Experiences with Ethical Questions

Clinical Center

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Abstract

This study involves a survey of patients and family members in 5 hospitals in the Washington DC and Baltimore metropolitan area that is designed to identify the experiences that individuals face regarding ethical issues in the course of their own or their family member's illness and clinical care. The survey is designed to answer the following questions: 1. What clinically relevant ethical questions do individuals face with regard to their own or their loved ones clinical care? 2.Have these individuals approached any members of their healthcare team to discuss these ethical questions? 3.What would make these individuals more comfortable approaching members of their healthcare team? 4.Have these individuals heard of clinical ethics consultants? 5.How interested are these individuals in using ethics consultation services? The intent of the research is to learn of potential areas of improvements in ethical encounters with healthcare providers, as well as with clinical ethics consultations, and to optimize the use of clinical ethics services in inpatient hospital settings. As of August 2020 675 surveys have been completed. Data collection was discontinued in March 2020 due to the SARS-CoV-2 epidemic. Analysis of qualitative data from the first several hundred respondents has been completed to learn about the most memorable ethical concerns that patients and family members have experienced during illness and medical care. In a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern in their or their family members care, participants reflected on many of the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. They focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. In an analysis to examine whether patients and family members spoke with healthcare providers about their ethical concerns, we found that approximately three quarters of respondents did discuss their most memorable concern and the vast majority found the discussion comfortable and helpful. Patients and families who did not have as positive an experience in discussing their concern, were asked to provide suggestions for making the discussion more comfortable and helpful.