Lighting a Fireball Under Informed Consent

The experts and their PowerPoints gathered in the nation’s capital. The purpose was to advance an important effort by the Institute of Medicine to improve communication and understanding between doctors and patients and researchers and subjects. No simple task, this.

Best practices were discussed, and one received special attention. Alas, amid the downpour of information during Monday’s daylong webcast of the Institute of Medicine’s workshop on informed consent and health literacy, I seem to have missed this most important of best practices.

I did hear that this particular best practice “increased comprehension better than the other modalities.”

And perhaps that’s why I missed it. I don’t speak in modalities, and that phrase highlighted for me the potholed intersection of informed consent and health literacy. Further complicated by language barriers, informed consent becomes a foreign concept in a time one presenter called “the wild west of data.”

The Institute of Medicine workshop was impressive, informative, perhaps even visionary, and concluded with a call from Dr. Michael Paasche-Orlow, professor of medicine at Boston University, not for simple tweaks but for a course change in scientific and medical culture -- “from persuasion to pedagogy.” (There’s one of those words again; I believe he meant a change from pleading to teaching.)

In particular, this course change demands attention to improved communication skills, so that when a doctor like Jeremy Sugarman of Johns Hopkins tells his patient she has “fibroids in the uterus,” and she hears “fireballs in the uterus,” he’ll know it and correct it.

Overcoming such language barriers, said Dr. Alicia Fernandez of UC San Francisco, “will improve informed consent for all patients.”

According to Fernandez, 21 percent of Americans speak a language other than English at home, and she cited a University of Washington study in presenting a troubling snapshot of medicine as practiced through interpreters. More hopefully, she said, when physicians are bilingual, “communication is more likely to be patient-centered.” 

Sugarman cited his patient’s “fireballs in the uterus” to humorous effect. Another patient heard him describe the “insensitive care unit,” and a diagnosis once was quoted back to him as “sick-as-hell anemia.”

But a malaprop is only a problem if the doctor doesn’t know he or she has been misunderstood. If the doctor knows, a discussion and better understanding might follow. And even, perhaps, truly informed consent.

Even among scientists and medical professionals, the obligations and purposes of informed consent are not universally clear, in part because they are not always the same. Consent is better understood as a process than a form, and it differs greatly for a patient than for a research participant (for whom there may be no expected benefit from what is being consented to). And consent forms are full of legalese.

“I have a lot of problem with the writing (in consent forms),” said Chris Trudeau of the Michigan-based Thomas M. Cooley Law School, whose PowerPoint included the before and after of a consent document. It was indecipherable in its original form, significantly more accessible following his surgical removal of polyps and the like. “Lawyers are not good at plain language. We’re good at protecting our clients, but lawyers don’t think about patients understanding.” 

The workshop itself neglected patients. Notably missing were patient and community perspectives, but to the credit of the members of the roundtable, and their chair, Dr. George Isham, they won’t long be absent from this process.

“What I see missing in this room are patients,” said Dr. Kenneth Saag of University of Alabama-Birmingham, “and people with a high school education or less, and there’s not as much diversity here as we’re dealing with.”

Sandra Crouse Quinn, a professor at the University of Maryland, noted that institution’s effort to address low participation in research by people of color via the program Building Trust Between Minorities and Researchers. “Minorities increasingly are willing to participate in research,” she said, “but they’re not participating.”

“A lot of us are too close to these issues,” Isham said toward the workshop’s end, “and don’t see the forest for the trees.”

With patient and community perspectives, the focus might improve.

See more about the workshop here. 

A Stethoscope for the Soul

The book title was familiar: “The Soul of Medicine.”

Sherwin Nuland, the influential surgeon, bioethicist and author, who died this spring, gave that name to his 2009 collection of stories, subtitled “Tales from the Bedside.”

The title is thoughtfully provocative. Does medicine have a soul? Do people? And what happens in the doctor-patient relationship when one answers yes and the other no? As I said, the title is thoughtfully provocative.

And here it comes again. “The Soul of Medicine”  (Johns Hopkins University Press) is also the title of a 2011 collection of stories co-edited by John R. Peteet and Michael N. D’Ambra and used as the text for “Spirituality and Healing in Medicine,” the course they teach at Harvard Medical School.

Two books with the same title is a little confusing, but it’s a healthy confusion. Especially if Peteet, D’Ambra and spirituality-minded colleagues are correct about “widespread concern that medicine may be losing its soul.”

“Prominent scientific critics such as Richard Dawkins have painted religion as an inherently biased phenomenon defined by irrationality, and anything associated with it as the antithesis of scientific progress,” writes Marta Herschkopf, a Harvard-trained physician, Yale- and Oxford-trained theologian and contributor to “The Soul of Medicine.” 

“No doubt influenced by such rhetoric, many physicians and administrators feel that spirituality has no place in a medical curriculum or in medical practice. Despite a significant body of research arguing to the contrary, they do not see religion and spirituality as directly contributing to human health and therefore consider it irrelevant.” 

I was reading Peteet and D’Ambra’s book as a three-day course in bioethics began at Harvard Medical School, which I attended as a member of the Harvard Community Ethics Committee.

Neither Peteet nor D’Ambra are faculty for the bioethics course, and their book was not cited. And yet theirs was the text I thought of during a break. A chaplain who had asked several probing questions during a session wondered if she had asked too many. She hadn’t, I assured her. Indeed, I welcomed the questions. They were insightful and brought a wondering and spiritual component into the dialogue.

Ethical conflicts in medicine, at least the ones I’ve studied as a member of the Community Ethics Committee, seem to sprout from communication problems and a disconnect between medical expertise and patient values. Since the doctor-patient relationship would be where “medicine may be losing its soul,” understanding and engaging those values is important.

Peteet and D’Ambra edited the collection, wrote the preface, and collaborated on chapters with theologian and palliative care expert Michael Balboni and psychologist, ethicist and rabbi Terry Bard. For other chapters, they brought together medical professionals and others with expertise on Judaism, Hinduism, Islam, Christianity, Buddhism, Eclectic Spirituality, Christian Science Jehovah’s Witnesses, A Secular Perspective and a historic context for this complex subject.

According to internist and ethicist Thomas Huddle, quoted in the chapter Ethical Considerations and Implications for Professionalism: “In asking for professionalism, that is, for just, altruistic, conscientious and compassionate physicians and trainees, medical educators are asking for morality, which is at bottom asking for more than expertise.”

Gowri Anandarajah, a family practice physician affiliated with Brown University, turns to Gandhi for insight into Hindu perspectives on medicine: “God does not come down in person to relieve suffering. He works through human agency. Therefore, a prayer to God, to enable one to relieve the suffering of others, must mean a longing and readiness on one’s part to labor for it.”

Perspectives in “The Soul of Medicine” can be contradictory, but such is the nature of the various faiths and spirituality. 

Dr. David Ring of Massachusetts General Hospital helps explain why science and religion/spirituality are such an uneasy pairing.

Ring writes: “The medical facts established by scientific experimentation are not typically disputed among various faiths and traditions. The realm of spirituality in medicine begins at the limits of science, at least when operating in the biomedical model of illness.”

Later, he adds: “Faith -- believing that one knows or understands something in the absence of sufficient experimental evidence -- is often counterproductive. Faith in the sense of optimal ‘spiritual’ health, on the other hand, is an integral part of wellness in a way that is measurable by experiment.”

Through studies of end-of-life care and treating human suffering, the Community Ethics Committee, which hosts this blog, repeatedly considers whether and where spirituality and religious faith belong in the contemporary dialogue about care.

Committee members past and present include include a rabbi, an imam, atheists, a Catholic chaplain, a Methodist minister, a professor at a Christian college and a Unitarian. With such a range of perspectives and values, clarity of language and meaning become crucial, says co-founder Carol Powers.

The Community Ethics Committee’s top priority is “the patient in the bed,” Powers has said often. But what of those with the daunting challenge of diagnosing and explaining medical problems, and helping patients come to decisions that respect both personal values and what is medically possible?

According to “The Soul of Medicine: “Because the behavior of physicians is largely self-regulated, encouraging them to seek as many resources as possible, including spiritual ones, will, one hopes, increase their ability not only to continue to strive to be professional, but also to find more lifelong career satisfaction.”

This post also appears at www.paulcmclean.com.