Whether in research or clinical practice, we are not the “ethics police”

Amid Bioethics Week at Johns Hopkins University, Berman Institute core faculty members challenge snarky stereotype with a call to collaborate in the name of science

By Gail Geller and Joseph Carrese

As the Johns Hopkins Berman Institute of Bioethics debuts its new home on campus today—a historic brick building that originally served as a Baltimore police station—some in the scientific community who have uttered the unfortunate phrase “ethics police” might chuckle to themselves and call the move all too fitting. But the perception of bioethicists as self-righteous scholars who go around telling researchers, practitioners, patients and their families what they ought to do is no laughing matter.

Sure, the institutional review boards, or IRBs, where we serve en masse have in some cases earned their reputation for being overly focused on informed-consent documents and other compliance technicalities.  And yes, some of us can be quick to wax philosophical on newscasts about end-of-life care and other vexing bioethical issues—musing about how moral people should think or act. Our critics have some basis for stereotyping us as the “wizards of oughts.”

But as we celebrate Bioethics Week throughout Johns Hopkins University and dedicate our first permanent home as Deering Hall, it’s high time to remind our peers in science and the public that our main goal is as it has always been: to collaborate with humility, respect and in constructive spirit to bring our person-centered perspectives to the table with those who are doing the hard work of biomedical research and life-saving clinical care. We’d like to think that, just below the sound bite, is a true appreciation for what people actually go through when weighty issues become real at the hospital bedside, in the nursing home or research lab.

To a great extent, our “clients” in research and medical practice already share our goals and ideals. We both want to encourage the best research and clinical care, and conduct them in ways that reflect humanist values and thoughtful resolution of difficult choices. A small survey we conducted a few years ago found that the vast majority of principal investigators, research staff and nurses at Johns Hopkins, where we work, believes the institution fosters the highest level of ethical research conduct. And in a paper by colleagues at the Cleveland Clinic’s Department of Bioethics, the authors note that most health-care professionals who seek an ethics consultation are experienced providers who already know what their ethical options and duties are in most situations.

Where bioethicists add value, then, is in those cases in which the options and issues are not clear-cut, and where values and perspectives compete. That’s where trained guidance can support, not police, best practices. (The Berman Institute offers a research ethics consulting service in partnership with the Johns Hopkins Institute for Clinical and Translational Research, at no cost to investigators involved in human-subjects research.)

CoverHere’s a clinical example that we wrote about in the Journal of the American Medical Association in 2006, where an 86-year-old woman was admitted to the hospital with a sudden change of mental status.

Her medical history included a host of ailments, including hypertension, depression and a hip fracture 18 months earlier. Since that injury, she had 24-hour care at home. But in recent months, cash flow forced her to reduce caregiver hours, and she spent nights home alone. A widow, without children, she could count on just one family member to look after her, a 71-year-old nephew who could only visit occasionally.

Eight months before she was hospitalized, the nephew met with her social worker, primary-care physician and an occupational therapist because the woman’s living arrangement was unsafe and put her at risk of further medical decline. When the assembled professionals shared their concerns with her, the patient said she would have to be dragged “kicking and screaming out of the house” if they wanted to put her in a nursing home.

There, in the emergency department, her vital signs dipped, her white blood cell count spiked, and she was delirious. But two days later, when she was deemed mentally and physically stable again, her doctors recommended she be discharged to a short-term rehabilitation facility. She refused and insisted on going straight home.

At that point, the ethics consultation team was called in to address the critical question: Does a debilitated, dependent, yet mentally competent patient have the right to return home to a potentially unsafe situation?

The consultation team sat down with the patient several times, then met twice with all those involved with her care—and together, they devised a solution. First, the woman’s nephew and caregivers would explain to her that treatment was incomplete without some professional rehabilitation, and that if she went directly home, she might end up right back in the hospital. In addition, by speaking with the patient’s social worker and others, the ethics consultation team learned that the woman might be eligible for a Medicaid waiver that would cover 12 hours of daily, in-home assistance—but only if she first spent 30 days in a skilled nursing facility.

The patient agreed to rehab, but only after her caregivers acknowledged what was most important to her: getting home and staying home. And her medical team went along because they wanted to respect her wishes without jeopardizing her safety.

We realize that a stereotype exists that bioethicists, by nature, presume moral authority. But honestly, we don’t know anyone among our colleagues who would say that he or she knows what the “right” thing to do is in every situation. And that’s not what we’re here for anyway. We’re here to uncover the ethical complexities and nuances, and address them together—for the sake of patients and the advancement of science.

Compassion and collaboration—that’s what to expect when you call on us … and in a perfect world, when you call the cops, too.

Gail Geller, Sc.D., M.H.S., and Joseph Carrese, M.D., M.P.H., are core faculty members at the Johns Hopkins Berman Institute of Bioethics.

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