By MICHAEL MILLENSON
It took 129 years for the inalienable rights proclaimed in America’s Declaration of Independence to apply to the rights of patients in relationship to their doctors.
In 1905, an Illinois appellate court ruled in favor of a woman who’d sued her surgeon for performing a hysterectomy without disclosing in advance what procedure he was doing. The court declared in what became one of the foundational principles of informed consent that “under a free government,” all citizens had the right to know what a doctor planned to do to their body before he did it, no matter how “skillful or eminent” the physician.
Today, in the era of artificial intelligence chatbots and data democratization, the lessons of America’s 1776 political revolution continue to be reflected in the push for patient rights.
The most important lesson pertains to power. The American colonists learned from hard experience that those holding power rarely concede it voluntarily. Similarly, every advance in information sharing with patients can be linked to sustained economic or legal pressure.
Just as the British genuinely believed they practiced “benign colonialism,” the surgeon who performed a hysterectomy on 40-year Parmelia Davis to treat her epilepsy not only believed deceiving her was necessary for her health, but might also have cited as support the American Medical Association’s Code of Medical Ethics. Patients, the code then declared, should not allow their own ”crude opinions” to obstruct “prompt” obedience to the doctor.
Although that admonition was subsequently axed, patient rights remained minimal for decades.
It took a 1957 court ruling, in a suit by a 55-year-old man whose legs were left paralyzed following a hospital diagnostic procedure, to ensure that “informed consent” included disclosing a surgery’s risks as well as benefits. A requirement that the disclosure be in “plain language” took until 1972, in a court ruling related to a 19-year-old man left paralyzed after a laminectomy for back pain. The court specifically cited the right “of every human” to determine “what shall be done with his own body.”
In The Silent World of Doctor and Patient, the medical ethicist Dr. Jay Katz wrote, “Physicians have always maintained that patients are only in need of caring custody.” As Katz went on to criticize that view, he might have added that it conflicts with how Americans have seen themselves since the country’s beginnings.
In The Radicalism of the American Revolution, historian Gordon Wood wrote of the college president who in 1789, the year the U.S. Constitution became effective, huffed that American self-reliance was being taken to such an extreme that he soon expected to see books such as “Every Man His Own Lawyer” and “Every Man His Own Physician.”
Or “woman.” Like the self-reliant women who, after World War II, rejected pediatricians telling them when to feed their infants and, supported by the writings of the dissident Dr. Benjamin Spock, decided they were capable themselves of knowing when their babies were hungry. Or like the self-reliant Boston feminists of the late 1960s and early 1970s, chafing at a medical system that discouraged questions, who wrote a book of frank health information, Our Bodies, Ourselves, that eventually sold millions of copies. Or like the self-reliant women in the 1980s who demanded to be fully conscious during childbirth and, with their partner, make a shared decision with the doctor as to whether to continue natural breathing exercises or accept medical intervention.
There is a deeper similarity between the patient rights fight and broader American political struggles. Although the American revolution’s ideals were codified in the first ten amendments to the Constitution – known as the Bill of Rights – the rights guaranteed to all in theory were often absent in practice. In that same vein, the patient rights ideals of informed consent, patient-centered care and shared decision-making that have been codified in countless rules, regulations and ethics codes too often in actual practice remain euphemisms for getting the patient to do what the doctor wants.
One recent article described how distraught patients facing a medical procedure are often given scant time to consider a dense, informed consent form whose content may be intended more to protect the institution than the patient. That process, stripped to its essentials, isn’t really that different from the “prompt obedience” sought by 19th century physicians.
The advent of the AI chatbot, with its personalized responses to even the most detailed medical questions, is rapidly changing the balance-of-power equation despite the technology’s known flaws. One in three adults used generative AI for health information and advice in the last year, according to both a KFF Tracking Poll and Rock Health’s Health AI Consumer Adoption Survey. More significantly, according to KFF four out of ten individuals using AI uploaded personal medical information such as test results or doctors’ notes. More significantly still, the latest Edelman Trust Barometer reported that 64 percent of respondents – including a majority of those over age 55 – said they believed consumers fluent with AI could do at least one task as well as, or better than, doctors.
Even greater change is on the way; e.g., patient-controlled AI agents, anyone? Just as the elite among the colonists came together to overturn the status quo, so, too are sophisticated patient activists interacting in the #PatientsUseAI Substack, launched by “participatory medicine” pioneer “ePatient Dave” deBronkart. For instance, efforts to institutionalize “patient-directed” health care include the Critical AI Health Literacy (CAIHL) initiative, from Hugo Campos and Liz Salmi, designed to help patients ask, “Who does this AI actually serve, and does it expand or constrain patient agency?” and the CLAIM initiative from Gilles Frydman (Contextual Literacy for AI in Medicine), which provides a structure for interrogating the AI’s answers and deciding what output applies to your actual situation. There is also the Patient AI Rights Initiative of The Light Collective.
A recent JAMA essay by medical ethicist Dr. John Lantos lamented “The Lost Aura of the Physician in the Age of Artificial Intelligence.” Wrote Lantos:
AI democratizes medical knowledge in a way no prior technology did. It is available to everyone, on their phones, without the expensive superstructure of a hospital…When a profession’s core competencies become reproducible, the central question is not whether it will disappear, but how its social role will be redefined.
The answer to that question lies in plain sight, if only physicians would refrain from hand-wringing and look, instead, to role models. My own list would include:
- Dr. Spock, who illustrated “patient empowerment” at its most elemental by telling a 1947 meeting of the AMA that “the baby will be a better judge than the mother or pediatrician of how much he needs at each feeding.”
- Dr. Sidney Wolfe, publishing the first consumer directory with physician information in 1974 as head of Ralph Nader’s Public Citizen Health Research Group and advocating for patients for decades afterwards.
- Drs. John Wennberg and Albert Mulley, pioneering the idea of shared decision-making in the 1980s with interactive tools intended to enable it.
- Dr. Tom Delbanco, coining the term “patient-centered care” in the 1990s and then providing years of guidance on how to accomplish it, including co-founding the OpenNotes movement.
- Dr. Donald Berwick, prompting the Institute of Medicine to declare patient-centered care a pillar of American medicine, helping popularize the phrase “Nothing about me, without me,” and so much else.
- Dr. Paul Batalden, forcefully advocating “co-production” of care.
- Dr. Tom Ferguson, a visionary far outside the medical establishment, grasping the potential of the digital information revolution in the early 1990s and inspiring the formation of the Society for Participatory Medicine.
While there are certainly other American physicians who might be on this list, I’d like to add a personal, non-American favorite. When I wrote a commentary a decade ago urging physicians to understand that digitized data meant their control of information was slipping away, it was summarily rejected by U.S. medical journals. The BMJ not only welcomed my essay, “When patient-centered isn’t enough,” which set out a “collaborative health” structure – one based on shared information, shared engagement and shared accountability – to replace the old hierarchy, but editor-in-chief Dr. Fiona Godlee designated it an “Editor’s Choice.”
On the eve of America’s birthday, it is ironic that the then-editor of the British Medical Society’s official journal appreciated patient autonomy better than many U.S. counterparts do even now. Unlike in 1776, the most avid activists don’t seek full independence – “Every Man His Own Physician.” They do insist, however, on a relationship that’s anchored in mutual respect and trust, not mere lip service. For their own sake, as well as the sake of their patients, doctors should listens.
As I concluded in my BMJ essay:
Accepting a less central role may feel at first as if collaborative health is shrinking the profession’s importance. In reality, accepting true partnership will profoundly expand the profession’s influence in the days to come.
Michael L. Millenson is president of Health Quality Advisors & a regular THCB Contributor.
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