“A reform,” wrote a 19th-century British parliamentarian, “is a correction of abuses. A revolution is a transfer of power.”
As we celebrate the American Revolution, catalyzed by men who broke ranks with their peers to overthrow a power structure that seemed immutable, let’s also celebrate those physicians who broke with their peers and declared independence for American patients.
The British Empire believed it was exercising “benign colonialism.” Physicians, similarly, traditionally believed “that patients are only in need of caring custody,” observed psychiatrist Jay Katz in his 1984 book, The Silent World of Doctor and Patient. As a result, doctors thought it their moral duty to act as “rational agents” on the patient’s behalf.
The first spark to set that notion on fire came immediately after World War II with the publication of a book, The Common Sense Book of Baby and Child Care, that became a surprise best-seller. Dr. Benjamin McLane Spock, author and pediatrician, told parents that their common sense was often as reliable a guide as any doctor’s advice.
At the time, the American Medical Association’s Code of Medical Ethics advised physicians that “reasonable indulgence should be granted to the caprices of the sick.” Even though new moms were not ill, many pediatricians nonetheless deemed it entirely unreasonable for them to decide when to feed their babies. Instead, the doctors gave them given feeding schedules.
Spock, in contrast, reassured moms that centuries of human history showed they could decide for themselves when to feed their infant, doing so “when he seems hungry, irrespective of the hour.”
As I wrote in a history of participatory medicine, as those babies grew into adulthood, they “would use legal, economic and political pressure to undermine a medical culture that genuinely believed sharing too much information could be harmful.”
Along that journey, however, patients would acquire crucial help from doctors with the imagination and courage to think and to act outside the existing paradigm.
It wasn’t a quick process. As with the American Revolution, the abuses had to accumulate and resistance had to build. In 1970, a group of Boston feminists frustrated by a system that told them to listen to their doctor and not ask questions published a booklet entitled Women and Their Bodies. One year later, a court decision resulting from a malpractice case required physicians for the first time to specifically disclose the full risks of a procedure in language the patient could understand. A year after that, in 1973, what had become the Boston Women’s Health Collective published Our Bodies, Ourselves. The book has sold millions of copies.
Also in 1973, the American Hospital Association, facing the threat of Congressional action, adopted a “patient bill of rights” that contained such guarantees as patients having the right to know the names of all the physicians treating them!
Meanwhile, a handful of doctors started chipping away at the medical pedestal, with research uncovering common abuses of power like unnecessary tonsillectomies and hysterectomies. John Wennberg, working with colleagues who deployed nascent computer capabilities, demonstrated enormous variation in even the everyday practice of doctors in the same area seeing the same kind of patients. The “caprices” of judgment, it seemed, were not just a patient problem.
Peer-reviewed medical journals rejected Wennberg’s first article. The university where he worked pushed him to find a different employer. Physician colleagues shunned him. But as policymakers’ concern over soaring medical costs grew, Wennberg’s work went mainstream.
“Inevitably, once you start down the variation path and ask which rate is right, you come up against who’s making the decision and whose preferences are being reflected,” Wennberg later said. “That’s where the revolutionary aspects of what we’re doing really are.”
Following that logic, Wennberg and a fellow physician, Albert G. Mulley, Jr. – who had experienced the impact of practice variation when trying to treat his severe back pain – in 1989 formed the Foundation for Informed Medical Decision Making. Its mission was to develop and disseminate video programs enabling patients to become partners in their care.
It was Wennberg who recommended Katz’s book to me, with its extraordinary statements about doctor “fantasies” of “authoritarian control” and its blunt accusation that doctor’s reluctance to involve patients in jointly thinking about care choices constitutes psychological “abandonment.”
Like Wennberg, Paul Ellwood, who’d coined the term “health maintenance organization,” also tried to put shared decision-making into practice. In 1988, he called for adoption of “a technology of patient experience.” In 1995, he founded the Foundation for Accountability (FACCT), with tools such as “CompareYourCare” to help patients play a more active role in medical decisions.
Meanwhile, Harvey Picker, a successful businessman who said he wanted the health care system to treat patients as persons, not as “imbeciles or inventory,” joined with the Commonwealth Fund to support a group of researchers who promised to promote what Tom Delbanco, the lead physician, called “patient-centered care.” The group’s 1993 book, Through the Patient’s Eyes, helped popularize the concept, which a 2001 report by Institute of Medicine formally designated as one of six aims for the health care system
It was Delbanco who with colleagues in the first decade of the 21st century founded the “open notes” movement to give patients the right to see the doctor’s notes that were still a hidden part of the electronic health record. That push eventually led to legislation and regulations giving patients full access to all their EHR information.
But, of course, by then there was another doctor the public was increasingly turning to: “Dr. Google,” also known as “the Internet.” In 1996, Dr. Tom Ferguson, who had been medical editor of the Whole Earth Catalog, wrote a book entitled, Health Online: How to Find Health information, Support Groups, and Self-Help Communities in Cyberspace. Three years after his death in 2006, a group of physicians and patients would found the Society for Participatory Medicine, following the principles of an individual CNN would call the “George Washington of the empowered patient movement.”
None of these physician revolutionaries acted in a vacuum. While all faced resistance, they also had support from colleagues, physicians and non-physicians alike. Eventually, they were reinforced by patient activism, public opinion, legal requirements and, at a glacial pace, changes in the culture of medicine. Those changes, in turn, came about because of the work of physicians like Donald Berwick, Paul Batalden, Leana Wen, Victor Montori, Danny Sands and many others.
Still, it is those physicians who over the years repeatedly acted to free patients from “authoritarian control” – even if their language was more diplomatic – that blazed the path.
Michael L. Millenson is president of Health Quality Advisors LLC, and author of the classic Demanding Medical Excellence. He can be reached at michael@healthqualityadvisors.
