December 28th, 2008
By the fourth sentence of the preface to The Silent World of Doctor and Patient, Jay Katz has quietly issued a startling challenge to a fundamental principle of the doctor-patient relationship. He writes:
It took time before I appreciated fully the oddity of physicians’ insistence that patients follow doctors’ orders. During my socialization as a physician I had been taught to accept the idea of doctors’ Aesculapian authority over patients. When I began to doubt this authority, that was the moment when the book began to take shape in my mind.
“The oddity of physicians’ insistence that patients follow doctors’ orders” – the phrase brings you to an abrupt halt. Jay Katz, who wrote those words in his landmark book published nearly a quarter of a century ago, died in late November at the age of 86.
A lengthy New York Times obituary related the life story of this refugee from Nazi Germany, a “physician and a professor at Yale Law School who spent more than 40 years tackling confounding questions on the boundaries between law, medicine, psychology and ethics.” Yet in part because Katz was so far ahead of his time and in part due to the breadth of his many other accomplishments, Katz’s status as the intellectual father of the patient empowerment movement went unmentioned in the Times obituary and remarked on in passing in just a few other places.
Yet The Silent World remains one of a few books “in each generation . . . that dig so incisively into fundamental, age-old issues that they reshape the way the topic is viewed thereafter,” as ethicist Alexander Morgan Capron notes in a foreword to a 2002 updated paperback edition.
The Silent World was recommended to me by John Wennberg in the mid-1990s, when I was working on what would become Demanding Medical Excellence: Doctors and Accountability in the Information Age. Wennberg, who admired Katz’s work, knew a thing or two himself about the flimsy foundation underlying a great deal of doctors’ orders. As a pioneer physician pushing for shared decisions, Wennberg must also have appreciated Katz’s assessment that “patient participation in decision making will not easily become a reality” because of concern that it would “bring to the public’s and patients’ attention vexing problems about the state of the art and science of medicine.”
The Long Struggle Of Patients To Escape Their Physicians’ “Caring Custody”
Katz was unafraid to declare that noble physician motivations did not excuse ignoble conduct. He frankly recounts the decades of struggle it took for patients to escape the straitjacket of “caring custody” their doctors prescribed. Physicians, fearing that sharing information was “inimical to good patient care,” had to be forced repeatedly to yield the authority they believed defined them as a profession.
So, for example, it took two Supreme Court decisions in the early part of the 20th century to establish that a doctor was required to tell the patient in advance the type of surgery he was going to perform and obtain at least some elemental form of consent. As Justice Benjamin Cardozo wrote in a 1914 case:
Every human being of adult years and sound mind has a right to determine what shall be done with his own body; and a surgeon who performs an operation without his patient’s consent commits an assault, for which he is liable in damages.
And yet it was not until the 1950s that doctors had to not only disclose the nature of a proposed procedure, but also discuss its potential benefits and harms. (That requirement emerged from a lawsuit by a California patient left paralyzed post-surgery.) It took nearly 20 years more to require that benefits and harms be described in language a layman could understand.
My own research made it abundantly clear that the patient’s voice was never fully heard unless patients insisted upon it. It was consumerism, investigative journalism, and congressional hearings that together forced the medical profession in the 1960s and 1970s to confront virtual epidemics of unsafe and unnecessary care. Meanwhile, newspaper exposés and proposed federal legislation are what caused the “voluntary” adoption by hospitals of a “patient bill of rights” ensuring such rudimentary obligations as telling the patient the names of all the doctors treating her!
We have obviously come a long way since then, particularly in the last few years. The Institute of Medicine’s 2001 Crossing the Quality Chasm enshrined “patient-centeredness” as one of the six fundamental aims of the health care system. The Internet has broken the professional monopoly on medical knowledge, and growing numbers of doctors are welcoming the chance to guide their patients in responsible use of reliable Web sites. Still, “patient-centeredness” as defined by well-meaning professionals, remains a long way from true partnership. Moreover, many doctors remain uneasy about a world where the prerogatives of professional autonomy have been permanently hemmed in by the demands of transparency and accountability.
In the 2002 edition of The Silent World, Capron points to “the continued relevance of the problems and solutions in communication, trust and decision making described two decades ago.” (Katz had not wanted to write a new foreword himself.) Interestingly, Capron also notes that Katz was influenced by the writings of moral philosophers who addressed issues such as autonomy.
Indeed, what leaps out when rereading Katz is his deep thoughtfulness about the behaviors and beliefs that make it so difficult to reshape the doctor-patient relationship within a changed moral framework. That sense of perspective contrasts sharply with the glibness of our own age, when shallow slogans about marketplace pricing, report cards, user-generated content, and a passel of other policy prescriptions assure us that satisfaction is guaranteed if we just pull the right lever or twist the right knob. Katz, who is unafraid to write about the influence of emotions such as faith, hope, and fear, knows better.
Katz ends by addressing the question of whether patients can be trusted to participate more fully in “the decisions that affect their well-being.” He concludes:
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I believe patients can be trusted. If anyone were to contest that belief, I would ask: Can physicians be trusted to make decisions for patients? This book has argued that both must be trusted, but that they can only be trusted if they first learn to trust each other.