Keywords: Participatory medicine, patient empowerment, patient advocacy.
Citation: Millenson ML. Spock, feminists, and the fight for participatory medicine: a history. J Participat Med. 2011 Jun 21; 3:e27.
Published: June 21, 2011.
Competing Interests: The author has declared that no competing interests exist.
If there was a moment when the modern-day relationship between physicians and patients changed forever, it was when Dr. Benjamin McLane Spock, author and pediatrician, rose to address the closing session of the American Medical Association’s centenary meeting on June 13, 1947. Spock’s The Common Sense Book of Baby and Child Care, published the previous year, had become a surprise best-seller in large part due to a startlingly untraditional approach to the doctor-patient relationship. The AMA’s original Code of Medical Ethics had advised doctors that “the obedience of a patient to the prescriptions of his physician should be prompt and implicit. [The patient] should never permit his own crude opinions as to their fitness to influence his attention to them.” The most recent ethics update at that time, from 1903, had softened that to “reasonable indulgence should be granted to the caprices of the sick.”
Such “reasonable indulgence,” however, had limits. In 1947, the “crude opinions” of patients were still held in such low esteem that pediatricians routinely gave anxious new mothers detailed schedules instructing them when to feed their infant. Yet here was Spock telling the House of Medicine that every mother could trust her own instincts and feed her baby “when he seems hungry, irrespective of the hour.”
Although some called this the “self-demand schedule,” Spock disdained this “new-fangled” label. Instead, he pointed out that mothers deciding when to feed their babies was “obviously nature’s own [method], which was used by the entire human race until the turn of the century.”
Cry and be fed, and damn the doctor’s orders! If there is a distinct beginning to participatory medicine as a movement — although it was decades away from defining itself in that way — it is certainly this. Those babies fed on the “self-demand” schedule would become even more demanding as they grew into adulthood. Chanting slogans like “Our bodies, ourselves” and “Nothing about us without us,” they would use legal, economic, and political pressure to undermine a medical culture that genuinely believed sharing too much information with patients was inimical to good care.
The history of how patients gained the power to make their voices heard is, unfortunately, as little known to most patient advocates as to most physicians. If the modern-day struggle for the legitimization of the patient’s voice symbolically began with a maverick pediatrician addressing the AMA, then a symbolic turning point arrived in 2001 when the Institute of Medicine (IOM), representing the profession’s elites, explicitly defined “patient-centered care” as one of six aims for health care system as a whole. Over time, the IOM report has become widely accepted by professional societies, government and other stakeholders as a description of the way health care should be provided, with patient-centered care even being incorporated into the medical school curriculum.
Legitimization is not the same as implementation. Nonetheless, the importance of the debate shifting from “Should the patient’s preferences and values be part of care decisions?” to “How can we make patient preferences and values part of care decisions?” should not be underestimated. At the same time, the lessons learned in reaching a turning point can still provide important guidance today. As with any struggle of those whose voice has been marginalized, power was never yielded merely for the asking and would never have been yielded at all without some physicians and others as patient allies.
The central problem for participatory medicine has been the belief by many physicians and patients alike that it can be hazardous to patients’ health. Doctors, observes psychiatrist Jay Katz in his 1984 book, The Silent World of Doctor and Patient, believed it was their moral duty to act as “rational agents” on the patient’s behalf. As a result, physicians “have always maintained that patients are only in need of caring custody,” writes Katz, whose book provides much of the intellectual foundation upon which participatory medicine rests.
Indeed, doctors knew that encouraging patients’ faith in the physician’s powers could constitute a powerful therapeutic tool in its own right. “Some patients, though conscious that their condition is perilous, recover their health simply through their contentment with the goodness of the physician,” is the way Hippocrates put it. Yet this “goodness” — what physicians call “beneficence” — became distorted over time. The fight to restore a balance began with redefining a basic right of informed consent.
The History of Informed Consent
Patient-centered care and participatory medicine would emerge to focus on the overall relationship between doctor and patient. Before that could happen, however, patients had to establish the elementary right to be treated with respect at one defining point in that relationship — when the doctor is recommending a specific treatment. It took an extended series of lawsuits and court rulings that began in the horse-and-buggy era of the 20th century and extended well after man had landed on the moon to establish a patient’s simple right to be told clearly in advance of a procedure its risks and its benefits.
The fight began at the start of the 20th century with a Supreme Court case involving 40-year-old Parmelia Davis, an epileptic whose surgeon removed her uterus and ovaries without informing Davis of his intentions. In the best tradition of “caring custody,” the surgeon later explained he had deceived his patient so she would not refuse the operation. Unless the patient expressly limits what the doctor can do, the surgeon’s attorneys argued, “she thereby in law consents that he may perform such operation as in his best judgment is proper and essential to her welfare.[a]”
The Supreme Court emphatically disagreed. In a 1905 opinion, the Court declared that Americans’ rights as free citizens prohibited “a physician or surgeon, however skillful or eminent…to violate without permission the bodily integrity of his patient…and [to operate] on him without his consent or knowledge.” In a 1914 Supreme Court decision involving a similar case with a patient named Mary Schloendorff, Justice Benjamin Cardozo famously added, “A surgeon who performs an operation without his patient’s consent commits an assault.”
Despite these rulings, it was not until the late 1950s that patients acquired the right to be told not only what the doctor was going to do, but also that action’s possible positive and negative effects. The requirement for “informed consent” resulted from a lawsuit filed by 55-year-old Martin Salgo, whose legs were left paralyzed following a hospital diagnostic procedure. Salgo claimed his doctors were legally liable for not warning him of that risk. In 1957, the California Court of Appeals agreed, writing: “A physician violates his duty to his patient and subjects himself to liability if he withholds any facts which are necessary to form the basis of an intelligent consent by the patient to the proposed treatment.” That ruling was subsequently broadened in other cases.
Yet it was not until 1972 that physicians were required to specifically disclose the risks in language the patient could actually understand. The U.S. Court of Appeals decision involved a 19-year-old boy left paralyzed after a laminectomy for back pain in early 1959. The ruling explicitly cited the earlier Supreme Court declaration that “every human being of adult years and sound mind has a right to determine what shall be done with his own body.” Also in 1972, the California Supreme Court declared that the “scope of the disclosure required of physicians defies simple definition” and must therefore “be measured by the patient’s need, and that need is whatever information is material to the decision.”
Just how far patients had come from the beginning of the 20th century to its end could be seen in a Wisconsin law requiring not just disclosure of possible complications, but “the availability of all alternate, viable medical modes of treatment.” The Wisconsin Supreme Court cited that statute in a 1996 ruling that the physician being sued should have “made the plaintiff aware of the alternative of lower risk surgery with a different, more experienced surgeon in a better-equipped facility.”
Of course, a balanced, fair, and understandable discussion with the patient about what the doctor wanted to do was still not the same thing as explicitly factoring in the patient’s beliefs and values into the recommendation in the first place. That required a different kind of relationship. Spock had told the AMA that “the baby will be a better judge than mother or pediatrician” of his needs. Now the Spock babies had grown up and were applying that same mindset to adult medicine.
Shared Decision Making
In 1970, a group of 12 Boston feminists, inspired by a health seminar taught by clinical social worker Nancy Miriam Hawley published a booklet entitled Women and Their Bodies. Hawley chafed at the restrictions of a medical system where “we weren’t encouraged to ask questions, but to depend on the so-called experts. Not having a say in our own health care frustrated and angered us. We didn’t have the information we needed, so we decided to find it on our own.” The booklet sold 200,000 copies by word of mouth alone.
Determined to spread the word, the authors incorporated as the Boston Women’s Health Book Collective and in 1973 published a book of frank woman-to-woman health advice called Our Bodies, Ourselves. The book would eventually sell millions of copies. Among its goals was showing that “women can become their own health experts, particularly through discussing issues of health and sexuality with each other, and…have a right to know about controversies surrounding medical practices and about where consensus among medical experts may be forming.”
Informed consent focused on a specific interaction. Feminism brought the sensibilities of the Civil Rights movement to the entire doctor-patient relationship. What would become a Patients’ Rights movement involved an entire rethinking of basic assumptions about physician beneficence, and it began by forcing the medical profession to confront an epidemic of unneeded hysterectomies, cesarean sections and other grossly inappropriate procedures documented in the medical literature for decades. Informed consent was about the patient’s legal rights; now, the focus shifted to the patient’s human rights.
As with the boycotts used by the Civil Rights movement, the economic clout of patients quickly came into play. In 1978, an activist involved in Our Bodies, Ourselves founded an alternative birthing center. The children raised on Dr. Spock were beginning to produce children of their own, and the old model of a doctor delivering the baby out of an unconscious mother in a sterile operating room while the nervous father waited outside was not one they wanted to follow. In the grown-up version of the “self-demand schedule,” the fully conscious mother shared responsibility with the doctor for decisions such as whether to continue natural breathing exercises or accept an injection to dull the pain. The father/birthing coach remained by his wife’s side in a labor and delivery suite decorated like a bedroom.
Because pregnant baby-boomer couples had plenty of time to choose an obstetrician and a hospital, doctors and institutions that were slow to respond to the new environment started losing patients. The pace of change was breathtaking: By 1983, “birthing rooms” and Lamaze were ubiquitous. Yet as recently as 1973, it had taken the threat of federal legislation to get the American Hospital Association to adopt a “patient bill of rights” that contained such rudimentary promises as guaranteeing the patient the right to know the names of all the physicians treating him!
The deadly AIDS pandemic led to a new level of participatory medicine in the mid- to late-1980s. Gay activists immersed themselves in the clinical details of AIDS research and treatment in order to push the medical community to do more and do it faster. Shared decision making deepened from discussions about therapeutic choices to decisions about the search for new therapies and the importance of the latest clinical trial results.
Perhaps just as importantly, the gay community showed shrewd insight into the power of language. Just as feminists rejected the word “girl” in favor of “woman,” the dependency implicit in the terms “AIDS sufferer” or “AIDS victim” was rejected in favor of the designation PWA, or “person with AIDS.” The phrase unmistakably asserted that the disease, no matter how deadly, was less important than the individual harboring it, and that the individual, however sick, remained a person whose voice deserved to be heard. For those with disabilities, this bedrock principle expressed itself in a powerful slogan: “Nothing about us without us.”
Yet perhaps the most important blows for participatory medicine were struck not by patient activists but by researchers whose findings steadily chipped away at the pedestal upon which professional judgment had so long rested. Dr. John Wennberg’s pioneering work on practice variation in the early 1970s burst into mainstream medical consciousness a decade later. Studies showing that many treatment recommendations were as much the product of “physician preference” as firm medical evidence unavoidably raised questions whether the “caprice” in medical care was really the doctor’s as the patient’s. “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 said. “That’s where the revolutionary aspects of what we’re doing really are.” In 1989, Wennberg and Dr. Albert G. Mulley, Jr. — who had personally confronted the lack of good evidence about treating back pain — 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. The Foundation’s commercial spinoff, Health Dialog, began in 1997.
Others were also looking at how to enhance the patient’s role in medical decisions. The Medical Outcomes Study examined the functional status and well-being of thousands of patients with chronic conditions. Researchers relied heavily on a scientifically validated 36-question survey patients filled out to report on how medical care had affected their health status. The results gave unprecedented attention to two important developments: first, the way in which patients’ and physicians’ perceptions of outcomes can differ, and second, the way in which involving patients can actually improve those outcomes. Dr. Sheldon Greenfield, who helped develop the survey, said it forced physicians to treat patients as “more than a bundle of lab symptoms.”
In that same vein, Dr. Paul Ellwood, who had originated the term “health maintenance organization,” used a prestigious medical lecture in 1988 to call for adoption of “a technology of patient experience designed to help patients, payers, and providers make rational medical care-related choices based on better insight into the effect of these choices on the patient’s life.” In 1995, he founded the Foundation for Accountability (FACCT), a non-profit that produced tools such as CompareYourCare to help patients play a more active role in medical decisions.
Meanwhile, in the heart of the medical establishment, Boston’s Picker Institute reminded hospitals that individuals do not lose their humanity when they become patients. The organization’s 1993 book, Through the Patient’s Eyes, introduced the term “patient-centered care” to remind colleagues of that fact.
What Changed and Why
In discussing why patient centeredness was chosen as one of its six aims for health care, the Institute of Medicine’s 2001 Crossing the Quality Chasm report concluded it was the right thing to do ethically, provided better outcomes clinically and was socially unavoidable at a time when the quantity of medical information on the Internet was exploding. All those factors certainly explain in part the rise of what would become participatory medicine. (This is a broader concept than patient centeredness.)
But the legitimization of power sharing with patients is also a direct consequence of the old model of unchallenged physician power being discredited by research, by legal testimony in lawsuits and by public statements from physicians who were intimately familiar with the patient injuries and deaths and excess costs the old model caused. The chipping away began in the 1950s. It rose in volume and power with the passage of Medicare in 1965 and the social upheaval of the late 1960s and early 1970s. What was once spoken about only in whispers began appearing in newspapers, magazines, on television and in Congressional hearings.
The court rulings expanding informed consent and the work of grassroots activists must be seen in the context of a society that no longer automatically deferred to authority figures, be they in government buildings, corporate offices or exam rooms. Americans decided that the adage, “Absolute power corrupts absolutely,” also applied to doctors’ decisions. This new outlook extended to areas as diverse as the right to be fully informed about medical experimentation and the families and patients having control over the “right to die” in the most serious of illnesses.
In a postwar society where political and corporate leaders, teachers and others had all been forced to share authority, medicine was not immune. No less than the editor of the New England Journal of Medicine pronounced in a 1988 editorial that “the era of assessment and accountability has arrived.” A 1991 article in an ethics journal casually asserted, “Shared treatment decision making, with its division of labor between physician and patient, is a common ideal in medical ethics for the physician-patient relationship.”
Patients were aided by other powerful stakeholders. As health care costs soared in the 1980s, insurers, employers, and government programs with an economic stake in more cost-effective care began to question doctors’ unchecked autonomy and enlist patients as their allies. These stakeholders raised broader questions in ways no individual patient primarily concerned with his or her own illness could do.
At the same time, organizations to institutionalize and deepen this new approach sprouted and took root. By the early years of the 21st century, shared decision making had morphed from something ethically desirable to a series of specific activities on a government-approved survey. “Nothing about us without us” has, to an extent, moved from a grassroots demand to a standardized measurement and even become a business. The book Through the Patient’s Eyes may have introduced the term patient-centered care in 1993, but by 2001 the survey of patient preferences it spawned had been sold off to a for-profit international corporation.
The line between “patients” and “consumers” has blurred, while the bottom line benefit of helping individuals make better health decisions has grown. Healthwise, which began in 1975 by activating community members through the provision of health information booklets, has grown to be a dominant web-based consumer health information provider. Health Dialog, the company that grew out of Wennberg and Mulley’s work, was sold in 2007 for $775 million. FACCT, which clung to a non-profit model based on grants and contributions, went out of business.
The advent of widespread Internet access and the popularity of health sites has made available to all the information once accessible only by an elite. Using information available on the web, a patient can develop a highly informed opinion about the necessity of a treatment, the manner in which it will be provided, who will do it and the likely outcome. That, in turn, opens the door for what has been called an “enhanced autonomy model” of the doctor-patient relationship, a model that takes into account the medical evidence, physician experience and patient preferences and values as part of an “intense collaboration.”
However, the explosion of health care websites since 2001 has also intensified the economic, political, social, and technological forces surrounding health care decisions. As web-based information and tools have grown in sophistication, decisions have moved from “medical” to “health-related” and are no longer necessarily made in conjunction with professionals. Moreover, a website’s passion for patient empowerment is not necessarily correlated with the accuracy of its information. Bias, both obvious and more subtle, remains a problem.
The difference between gaining power and wielding it responsibly is increasingly coming to the fore. An analysis of 518 articles using the term “shared decision making” found no shared definition of the term and very little recognition by any one article of previous research. Others have noted that neither providers nor patients have yet worked out the combination of reliable and understandable decision support both will need to make informed active participation a reality.
Participatory Medicine as an ideal must compete for the attention of consumers in a crowded marketplace where versions of this same goal are offered up to patients by businesses, providers, health plans, employers, and others. That’s both good and bad news. Participatory Medicine has moved onto the main stage of medicine, just as Dr. Spock captured the spotlight at an AMA meeting so many years ago. The stakes are nothing less than our bodies and ourselves. Those whose goal is to create a new care paradigm must forthrightly address the challenges to implementation and actively engage other stakeholders to take control of the history that is being made right now, and that will shape Participatory Medicine in the future.
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Copyright: © 2011 Michael L. Millenson. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.