Rare tumors, empowered patients, long trips for expert care
The Transformation of the Physician/Patient Relationship
"The minute she recomended chemotherapy, a red flag went up. I already knew that chemotherapy was out of the picture for this kind of cancer. I rejected it."
"The doctors don't have experience with this disease, and yet they think that because they're doctors, they can fix anything. Many seem unwilling to learn from a patient who has done extensive research on the condition."
"I've had good doctors, but they did not seem to know too much about this disease."
"In truth, I'm managing my own care."
"You have to fight the medical system and challenge your doctors." All of these patients are talking about their experience with carcinoid tumors and the doctors and health care system in the Dallas-Fort Worth area. The newspaper article reports that many Texans are seeking medical care out of state to be able to consult with experts who specialize in this realtively rare tumor.
One local oncologist talks about giving care in a new way: "I'm not a carcinoid expert, but these patients are looking for someone to talk to about their treatments. They bring treatment plans from the experts, and I act as an intermediary in implementing them."
This recent newspaper article highlights just how far we have come from the old paradigm of paternalism that was attacked in the influential 1984 book The Silent World of Doctor and Patient by Jay Katz. Katz advocated mandatory autonomism where patients should participate in decisions about medical care and take responsibility for their own care and conduct.
Others have argued that patients want autonomy, competence, and kindness from their physicians, and that many patients are too tired, too depressed, or too focused on getting well to want to take part in the decision making process. Atul Gawande writes, "As the field grows ever more complex and technological, the real task isn't to banish paternalism; the real task is to preserve kindness."
"Some peole may feel that the techniques...that a good clinician uses to persuade a patient to choose the treatment the physician desires smacks of paternalism....Preserving kindness involves (the physician) shouldering some of the responsibility for patients should they desire it," writes Susan Zimmerman, a physician and mother of a child with a chronic condition. Gawande believes preserving kindness sometimes requires respecting he patient's autonomy, sometimes taking on decisions from the patient, and sometimes proactively guiding the patients to make the right decisions for themselves.
Patients also come in different flavors; some want autonomy and some want paternalism. Americans have been divided into Moderns, Traditionals, and Cultural Creatives who see the world in quite different terms. Moderns accept the commercialized urban industrial world; traditionals accept traditional male and female roles and small town values; cultural creatives reject materialism, cynicism, hedonism, and embrace transformational experience and globalism. Cultural creatives are much more likely to become empowered patients who demand a say in treatment plans than a traditional American.
The physician/patient relationship is being transformed. It is difficult to know if the patient in front of you wants the answers or wants to be a partner in the treatment plan. Some patients will do better if they are relieved of participating in making decisions; some will do better only if they actively participate. What is a little bit frustrating is the lack of trust between patient and physician and how far, at times it seems we are from the ideal described by Francis Peabody in 1927:
"The good physician knows his patients through and through, and his knowledge is bought dearly. Time, sympathy, and understanding must be lavishly dispensed, but the reward is to be found in that personal bond which forms the greatest satisfaction of the practice of medicine. One of the essential qualities of the clinician is interest in humanity, for the secret of the care of the patient is in caring for the patient."
References: Sherry Jacobson, Carcinoid patients say it's tough finding D-FW experts, best treatment. The Dallas Morning News, August 8, 2005 (http://dallasnews.com/cgi-bin/bi/gold_print.cgi.)
SoundPractice The doctor/patient relationship for the 21st century. The Physician Executive, September-October, 2001.
Atul Gawande, Annals of medicine: Whose body is it, anyway? The New Yorker, October 4, 1999, 84-91.
Susan Zimmerman, Letter to the editor, The New Yorker, November 1, 1999, 8.
Carl E. Schneider. The Practice of Autonomy. New York: Oxford University Press, 1998.
Jay Katz, The Silent World of Doctor and Patient. New York: Free Press, 1984.
Francis Peabody. The Care of the Patient. 252 JAMA 818 reprinted from 88 JAMA 877, 1927.