Even in the court of ethics and medical professionalism, there’s nothing wrong with the occasional honor or award. On day two of the conference, the Maclean Center awarded its first Prize in Clinical Ethics and Health Outcomes – at $50,000, the largest such prize in the ethics field – to John Wennberg, the Peggy Y. Thomson Professor for Evaluative Clinical Sciences at Dartmouth Medical School and founding editor of The Dartmouth Atlas of Health Care.
In 2007, the journal Health Affairs named Wennberg as “the most influential health policy researcher of the past 25 years.” Fitzhugh Mullan, former director of the Bureau of Health Professions in the U.S. Department of Health and Human Services, described Wennberg as “both the Christopher Columbus and the Johnny Appleseed of clinical variation,” meaning he not only discovered the field but also brought it to the attention of the medical and health policy communities.
“While John Wennberg is regarded as a health services researcher,” said Mark Siegler, MD, director of the MacLean Center, “his fundamental work on patient preferences and shared decision making highlight his contributions to the field of clinical medical ethics.”
The Dartmouth Atlas examines the patterns of medical resource intensity and utilization in the United States, with special emphasis on end-of-life care, inequities in the Medicare reimbursement system and the under-use of preventive care.
From the start, it has brought surprises, according to Kenneth Polonsky, dean of the Division of the Biological Sciences and the Pritzker School of Medicine at the University of Chicago, who introduced Wennberg. The report comprehensively documented the “striking differences” in the amount of health care provided in different regions, adding the provocative observation that the amount or cost of care delivered did not correlate with good outcomes.
Joking that “when you get paid so much to give a lecture, you get a little nervous,” Wennberg spoke about the early days of the Atlas and how their studies of practice variation in the mid-1970s “challenged the notion that science was driving utilization.” Instead, decisions about surgical treatment for benign prostate hyperplasia revealed what the researchers called “surgical signatures,” patterns of practice based on the beliefs of individual surgeons.
When Wennberg’s team developed short, balanced videos to show to patients, explaining the risks and benefits of surgical treatment and showing taped interviews with two physicians who had made different decisions, patients were much less likely to choose surgery. “This was the first evidence,” he said, “that engagement of patients could lead to the right utilization rate.”
However, only about 25 percent of medical care turns out to be so “preference-sensitive,” forming what Wennberg calls “little islands of rationality.” Studies of end-of-life care found a far more limited role for shared decision making between patients and their caregivers. Instead, demand for resources appears to be driven by supply. Empty hospital beds and unused capacity strongly correlate with increased medical care late in life. For example, more than twice as many patients were admitted to an intensive care unit in the last six months of life at UCLA compared to Dartmouth.
Wennberg described the four goals of the Atlas’s end-of-life team for the next five years: to better inform patient choices, improve the science behind these decisions, promote organized care and constrain undisciplined capacity spending. At this point, he said, “we don’t need more research, we need more action.”
Another session at the conference focused on a very different book, not an atlas but a historical novel, based on true events and real people. Open Wound: The Tragic Obsession of Dr. William Beaumont, by former ethics fellow Jason Karlawish, a professor of medicine and medical ethics at the University of Pennsylvania, examines the professional and ethical issues raised by William Beaumont, a 19th-century surgeon who cared for – and experimented on – a patient with a shotgun-blast-induced hole in his stomach. Beaumont saved the patient’s life, but then used this wound, which never quite healed, as a window to decipher the mysteries of digestion.
Karlawish fictionalized this well-known historical case to explore the feelings and motivations of medical researchers. The idea came from a colleague, a very distinguished physician-scientist who ran a high-profile gene-therapy trial that went badly wrong, resulting in the death of a patient. The subsequent lawsuit made it only too clear that the caregivers involved were not just dispassionate actors, doctors eager to help a patient with a rare disease. They were, “in fact, all too human,” Karlawish said, “competitive and eager to succeed.”
For Beaumont, a capable but unexceptional surgeon, this case inspired similar dreams. His wounded patient was a difficult case, but one he knew how to handle. But when the incompletely closed wound enabled Beaumont to investigate the digestive process by inserting and extracting foods and juices, the surgeon dreamed of something bigger, fame and fortune, a chance to mingle with the celebrated academic physicians of his day. Both patient and doctor signed a contract, one of the first written examples of informed consent.
Speaking to an all-doctor audience at the ethics conference, the University of Chicago’s Daniel Sulmasy lauded the book for its realistic clinical details, its “short chapters, for physicians with limited attention spans,” and the breadth of ethical issues raised-including costs of care, divided loyalties, the lure of prestige and the decision to use a patient in desperate need as a “ticket into the world of the medical elite.”
No stranger to divided loyalties, Karlawish had covered his bases. Two days before the conference he and a colleague published a commentary in JAMA on the importance of telling a good story in relating scientific knowledge to the public.
“Patients and families have the right to tell their stories,” they wrote. “But what about scientists? Facts and figures are essential, but insufficient, to translate the data and promote the acceptance of evidence-based practices and policies. Narratives – in the forms of storytelling, testimonials and entertainment – have been shown to improve individual health behaviors in multiple settings… Stories are an essential part of how individuals understand and use evidence.”