Bioethics Forum Essay
Health Equity Without Ethics Perpetuates Marginalization
Clinical ethics seeks to give voice to those whose voices have been silenced or overridden because of, among other things, their gender, nationality, race, or ability. Giving voice to the voiceless has been a hallmark of The Joint Commission’s patients’ rights performance standards for hospitals since 1971 and, indeed, it has been expanded over the decades. But now the patients’ rights performance standards appears to be on life support because The Joint Commission eliminated the sole element of performance that governed clinical ethics services.
To eliminate a quality metric for clinical ethics is at odds with good clinical practice and it reinforces structural inequality. This performance standard offered a means to have a patient’s preferences for care heard and responded to; eliminating the standard marginalizes the most vulnerable among us. Often this means the silencing of Black, Indigenous, and other people of color, as well as LGBTQIA, differently abled, and economically disadvantaged people.
A core principle of bioethics is social justice, which strives for the fair distribution of burdens and benefits. Social justice seeks to afford all persons, especially the most vulnerable, protection from harm, equitable access to health care, and equitable prospects for good health. Disparities in social justice have become especially evident in the wake of the COVID-19 pandemic. In response, leading organizations have developed frameworks and policy statements for addressing health disparities, including the American Association of Medical College’s Center for Health Justice, the American Medical Association Center for Health Equity, as well as the Center for Medicare and Medicaid’s CMS Framework for Health Equity. Equity now is front and center. And, we argue, clinical ethics is at the center of health care equity.
The Joint Commission’s decision to subsume the clinical ethics standard into the ethics of business operations has virtually eliminated this centrality, thereby virtually eliminating the importance of clinical ethics. This decision, we argue, contains a conceptual error. It assumes that the inclusion of health care equity as a leadership standard obviates the need for a process to resolve ethical dilemmas. And we know what happens when we assume.
The Joint Commission’s “journey to achieve health care equity” calls for organizations to identify health care disparities in populations by stratifying quality and safety data using sociodemographic data. Performance measures such as these are important systems-level metrics, and beginning to assess and identify patient populations with social needs related to the determinants of health is crucial. Clinical ethics services do this crucial work. They involve multidisciplinary teams to focus on the social, economic, or structural barriers that patients and communities experience when seeking access to quality care. That involves listening to patients talk about the communications conflicts they experience and the trust, or lack thereof, they feel toward health care providers and organizations. Not discerning these experiences and feelings perpetuates social injustice. Said differently, failing to respect individuals’ moral agency and autonomy perpetuates structural injustice and health inequities.
Removing the element of performance related to clinical ethics process amounts to removing a protection that validates a right for vulnerable persons to self-advocate. Identifying aggregate population-based data is important for identifying health care disparities, but it does not discern the individual patient’s value-based care needs. The elimination of the performance standard for clinical ethics services is antithetical to the mission of The Joint Commission to improve health care for the public, since it increases vulnerability, a form of structural inequality, in the care experience.
The Joint Commission’s health care equity performance standard should include a strengthened element of clinical ethics performance. An institutionally supported clinical ethics service that empowers self-advocacy for patients, staff, and family to resolve ethical conflicts would address identified health care inequities. Structural racism, bias, and discrimination are known underlying causes of health disparities, including unequal access to quality health care.
We agree with The Joint Commission that health care disparities are a quality-of-care issue that must be included as a sustained performance measure with targeted interventions. We suggest that the commission take this provision one step further and create a strengthened clinical ethics performance standard that has institutionalized processes and performance measures for addressing the individual patient’s values. As bioethicists, it is our duty to advocate against The Joint Commission’s standard changes because they are contrary to the best interests of patients. Standards for protecting patients’ rights to resolve ethical dilemmas, ingrained in best practices and widely understood to be the ethical obligation of the health care system, ought to be explicitly articulated in The Joint Commission’s standards and not left to an assumed understanding of the duties and obligations of care for our most vulnerable.
Virginia A. Brown, PhD, MA, is an assistant professor at the University of Texas at Austin Dell Medical School in the department of population health and a courtesy assistant professor in the department of psychiatry and behavioral sciences. @VirginiaABrown
Jamie C. Riches, DO, is an assistant attending physician and ethics consultant at Memorial Sloan Kettering Cancer Center, an assistant professor of medicine at Weill Cornell Medical College, and Master of Science in Bioethics student at Columbia University. @DrJamieRiches
Renee McLeod-Sordjan, DNP, PhD.c, F.A.A.N., HEC-C, is director and system chair of the Division of Medical Ethics at Northwell Health. She is a professor and the inaugural Vice Dean of the Hofstra-Northwell School of Nursing and Physician Assistant Studies
The authors are members of the Empire State Bioethics Consortium. The ideas and views are not necessarily those of ESBC or institutions with which they are affiliated.
This is the second in a series of three essays on a recent change in ethics performance standards made by the country’s leading accrediting body for hospitals. Read the first essay, “Where is Clinical Ethics in the Revised Hospital Accreditation Standards?”