Historically, the field of bioethics has focused much attention on ethical issues raised by the latest advances in medical science. For example, is it acceptable to use genetic engineering to create “designer babies”? Should employers be allowed to use brain imaging to assess traits such as truthfulness? What about the ethics of stem cell research, mitochondrial therapy, or chimeric organ transplants? Bioethicists who write about these ethical issues often work in universities or other academic settings.
But these topics may have little practical relevance to people who work or are treated every day in hospitals and other organizations that deliver health care. There, the ethical issues tend to be of a different sort: less “sexy,” perhaps, but no less compelling. Here are a few examples. An elderly woman wants to go home, but a social worker is concerned that she might not be able to care of herself. Doctors recommend chemotherapy for a child’s cancer, while his parents want to try nontraditional medicine. A patient’s adult son wants to continue life-sustaining treatment, and his daughter wants to stop it. Such everyday ethical issues can be heart wrenching; they also often involve high-stakes decisions that have a profound effect on health care outcomes.
Since 2013 the Greenwall Foundation’s grants program, Making a Difference in Real-World Bioethics Dilemmas, has supported innovative bioethics research projects that have a real-world, practical impact. The foundation’s overall mission is “to promote bioethics research in order to improve patient care, to inform biomedical research, and to enhance public policy.” Recently, Greenwall awarded a grant to Altarum Institute and its new Center for Ethics in Health Care.
Altarum Institute is a nonprofit health systems research and consulting organization that works to create comprehensive, systems-based solutions that improve health. Altarum’s Center for Ethics in Health Care works to improve health care by improving ethics programs and practices throughout the health care system. The center’s vision is that all health care organizations will have effective systems for managing ethical issues. Its approach is consistent with Altarum’s Systems Change Model, which emphasizes the need, first and foremost, to gain an objective and comprehensive understanding of the problem that needs to be solved.
To that end, the center’s first research project is a national survey on health care ethics consultation, a service provided in many hospitals in the United States to help patients, families, and health care providers handle everyday ethical issues.
Unlike virtually every other aspect of health care delivery in the United States, ethics consultation services are almost completely unregulated. For a number of years, concerns have been raised about the quality of ethics consultation and the fact that such services operate with little oversight.
In an effort to address this problem, bioethics experts have been actively debating how best to improve ethics consultation practices. However, these experts lack critical information that they need to determine which improvement strategies will be most effective. To be successful, they need answers to questions such as
- How is ethics consultation currently practiced?
- How do current ethics consultation practices align with national quality standards that were recently established by the American Society for Bioethics and Humanities?
- What are the perspectives of ethics consultants and hospital administrators—the key stakeholders who are responsible for ethics consultation practices?
- What is the relationship between ethics consultation practices and factors such as hospital size and the training of ethics consultants?
Surprisingly little is known about ethics consultation in US hospitals. Much of what is known comes from an article I wrote with two colleagues, which was published in the American Journal of Bioethics. In that study, we found, among other things, that significant resources are devoted to health care ethics consultation, ethics consultation practices vary widely, many ethics consultation practitioners have no formal ethics training, and ethics consultation services are rarely evaluated for quality.
Our new research study, funded by a $306,864 grant from the Greenwall Foundation along with internal funding from Altarum Institute, will provide needed information about the questions outlined above. Our research team will contact ethics consultants and hospital administrators at 600 US hospitals and ask them about their hospitals’ ethics consultation practices and their views on potential improvement strategies. We will also assess the quality of ethics consultation through standardized reviews of written ethics consultation records conducted by specially trained experts. This information will help inform strategies to improve ethics consultation nationwide. More details about this study are available here.
In addition to studying ethics consultation, we are also looking at hospital ethics programs more broadly, including the scope of these programs, the activities they perform (for example, ethics education for health professionals, making ethics policy), and their funding.
Once we understand how hospitals are currently handling ethical issues, we will focus our efforts on planning and implementing systems change. We are interested in practical questions such as
- What is the best way to proactively identify and address ethical issues in hospitals?
- What organizational factors are associated with ethics program effectiveness?
- What standards, training, tools, and resources do ethics programs need to succeed?
For the systems change work, we are seeking potential funders, as well as partnerships with other like-minded organizations that are committed to having a real-world, practical impact in the realm of health care ethics.