By MICHAEL MILENSON
It took 129 years for the inalienable rights proclaimed in the United States Declaration of Independence to be applied to the rights of patients in relation to their doctors.
In 1905, an Illinois appeals court ruled in favor of a woman who had sued her surgeon for performing a hysterectomy without disclosing beforehand what procedure he was performing. the court declared in what became one of the founding 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 doing it, no matter how “skilled or eminent” the doctor was.
Today, in the era of AI chatbots and the democratization of data, the lessons of the American political revolution of 1776 continue to be reflected in the fight for patients’ rights.
The most important lesson has to do with power. American colonists learned through hard experience that those who held power rarely gave it away voluntarily. Likewise, each advance in information sharing with patients may be linked to sustained economic or legal pressure.
Just as the British sincerely believed that they practiced “benign colonialism“, the surgeon who performed a hysterectomy on Parmelia Davis, 40, to treat her epilepsy not only believed that deceiving her was necessary for her health, but may also have cited the American Medical Association’s Code of Medical Ethics as support. Patients, the code then declared, should not allow their own “crude opinions” to obstruct “prompt” obedience to the doctor.
Although that warning was later removed, patients’ rights remained minimal for decades.
It took a 1957 court ruling, in a lawsuit brought by a 55-year-old man whose legs were paralyzed after a hospital diagnostic procedure, to ensure that “informed consent” included disclosure of both the risks and benefits of surgery. The requirement that disclosure be made in “plain language” lasted until 1972, in a court ruling involving a 19-year-old man who was paralyzed after a laminectomy for back pain. The court specifically cited the right “of every human being” to determine “what shall be done with his or her own body.”
In The silent world of the doctor and the patientwrote Dr. Jay Katz, a medical ethicist, “doctors have always maintained that patients need only careful guarding.” While Katz criticized that view, he might have added that it conflicts with the way Americans have seen themselves since the country’s inception.
In The radicalism of the American Revolutionwrote historian Gordon Wood of the university president who in 1789, the year the United States Constitution went into effect, became angry that American self-reliance was being pushed to such an extreme that he soon expected to see books like “Every Man His Own Lawyer” and “Every Man His Own Doctor.”
Or “woman.” Like the self-sufficient women who, after World War II, refused to be told by pediatricians when to feed their babies and, supported by the writings of the dissident Dr. Benjamin Spock, decided that they were capable of knowing when their babies were hungry. Or as the self-sufficient Boston feminists of the late 1960s and early 1970sirritated by a medical system that discouraged questions, who wrote a book of frank health information, Our bodies, ourselveswhich ultimately sold millions of copies. Or like the self-sufficient women of the 1980s who demanded to be fully conscious during childbirth and, with their partner, make a shared decision with the doctor about whether to continue with natural breathing exercises or accept medical intervention.
There is a deeper similarity between the fight for patients’ rights and broader American political struggles. Although the ideals of the American Revolution 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, patient rights ideals such as informed consent, patient-centered care, and shared decision-making, which have been codified in countless rules, regulations, and codes of ethics too often in current practice, remain euphemisms for getting the patient to do what the doctor wants.
A recent article described how distressed patients facing a medical procedure are often given little time to consider a dense, informed consent form whose contents may be intended to More to protect the institution than the patient.. That process, reduced to its essentials, is not really that different from the “prompt obedience” sought by 19th doctors of the century.
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 past year, according to both. a KFF follow-up survey and Rock Health Healthcare AI Consumer Adoption Survey. More importantly, according to KFF, four in ten people using AI uploaded personal medical information, such as test results or doctor notes. More significantly, the last Edelman Trust Barometer reported that 64 percent of respondents, including the majority of those over 55, said they believed AI-proficient consumers could perform at least one task as well or better than doctors.
Even bigger changes are coming; e.g. patient-controlled AI agents, anyone? Just as the settler elite united to overthrow the status quo, so too are the sophisticated patient activists who interact in the #PatientsUseAI substacklaunched by “participatory medicine” pioneer, “ePatient Dave” of Bronkart. For example, efforts to institutionalize “patient-directed” healthcare include the Critical AI Health Literacy program (CAIHL), by Hugo Campos and Liz Salmi, designed to help patients ask: “Who does this AI really serve? Does it expand or limit patient agency?” and the SAY Gilles Frydman’s initiative (Contextual Literacy for AI in Medicine), which provides a structure for interrogating AI responses and deciding which outcome applies to your real situation. There is also the Patient AI Rights Initiative or The Light Collective.
A recent JAMA rehearsal medical ethicist Dr. John Lantos lamented “The Lost Aura of the Physician in the Age of Artificial Intelligence.” Lantos wrote:
AI democratizes medical knowledge like no previous technology did. It is available to everyone, on their phones, without the expensive superstructure of a hospital… When the core competencies of a profession become reproducible, the central question is not whether they will disappear, but how their social role will be redefined.
The answer to that question is plain to see, if only doctors would refrain from worrying and look instead for role models. My own list would include:
- Dr. Spock, who illustrated “patient empowerment” in its most basic form by saying at a 1947 AMA meeting that “the baby will judge better than the mother or the pediatrician how much he needs at each feeding.”
- Dr. Sidney Wolfe, who published the first consumer directory of medical information in 1974 as director of Ralph Nader’s Citizen Public Health Research Group and advocated for patients for decades afterward.
- Drs. John Wennberg and Albert Mulley pioneered the idea of shared decision making in the 1980s with interactive tools intended to enable it.
- Dr. Tom Delbanco coined the term “patient-centered care” in the 1990s and went on to provide years of guidance on how to achieve it, including co-founding the OpenNotes movement.
- Dr. Donald Berwick, who pushed the Institute of Medicine to declare patient-centered care a pillar of American medicine, helping to popularize the phrase “Nothing about me, without me,” and much more.
- Dr. Paul Batalden, strongly advocating for the “co-production” of care.
- Dr. Tom Ferguson, a visionary far outside the medical establishment, who grasped the potential of the digital information revolution in the early 1990s and inspired the formation of the Society for Participatory Medicine.
While there are certainly other American doctors who could be on this list, I would like to add a personal, non-American favorite. When I wrote a commentary a decade ago about doctors understanding that digitized data meant their control of information was slipping, it was summarily rejected by American medical journals. The BMJ Not only did he welcome my essay, “When focusing on the patient is not enough”, which established a “collaborative health” structure – based on shared information, shared commitment and shared responsibility – 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 official journal of the British Medical Society valued patient autonomy higher than many of his American counterparts, even now. Unlike what was happening in 1776, the most avid activists do not seek total independence: “Every man has his own doctor.” However, they insist on a relationship that is anchored in mutual respect and trust, not mere words. For their own sake, as well as that of their patients, doctors must listen.
As I concluded in my B.M.J. rehearsal:
Accepting a less central role may at first seem as if collaborative health is reducing the importance of the profession. Indeed, embracing true partnership will profoundly expand the influence of the profession in the days to come.
Michael L. Millenson is president of Health Quality Advisors and a frequent contributor to THCB.
