Embracing patients as agents of change - August 2014

As far back as the Hippocratic Oath, doctors have thought of themselves as both teachers and lifelong learners. Although anyone is a potential pupil, we tend to accept lessons only from certain people. Other doctors and biological scientists hold the most sway. Sometimes we'll listen to social scientists. Patients tend to find themselves at the bottom of this physician education hierarchy, though this appears to be changing.

I'm not talking about learning the everyday lessons of history-taking and physical examination. Each new patient encounter helps us hone these skills. However, when it comes to fundamental questions about how we practice medicine, we do not invite patients into the conversation. Instead, we close the door when they try to join us. There are two stories, one old and one new, that illustrate what happens when patients come crashing through the door that physicians try to close.

Libby Zion is a name that makes a lot of doctors shake their heads. She was an 18-year-old college student admitted to New York Hospital in 1984 with an acute illness that was incorrectly diagnosed and improperly treated. Through a tragedy of errors related to inadequate supervision and overwork of junior doctors, her condition only worsened. Fewer than 24 hours later, Libby was dead.1

What was the response of Libby Zion's hospital and treating physicians? They attributed her death to an unspecified infection. They did not entertain her father's entreaties to examine doctors' working conditions, to understand how fatigue and clouded judgment can place patients at risk of harm. Rather than submitting to the intransigence of the health care system, Sidney Zion used his connections to garner national media attention. A New York State commission was formed that created new restrictions on many hours doctors-in-training could work, leading to nationwide duty hours restrictions.

My colleagues and I often lament these restrictions as inflexible and ham-handed. Every one of us has a tale about the problems with duty hour restrictions.2 At my hospital, an intern abruptly left in the middle of ICU morning rounds to comply with the regulations. So much for patient care. Perhaps if physicians had joined the work hours conversation earlier, we could have come up with a system that addressed safety concerns while preserving continuity of care and the educational experience.

This story of externally-imposed change seems poised to repeat itself in gynecologic surgery. Last year, Harvard anesthesiologist and mother-of-six Amy Reed had a hysterectomy and was diagnosed with a rare uterine cancer called leiomyosarcoma. Because the hysterectomy was performed with using a tissue-disrupting procedure called morcellation, her cancer spread throughout her abdomen, significantly worsening her chances of survival.

Concerned about the potential for other women to experience the same plight, Dr. Reed and her husband Dr. Hooman Noorchashm tried to engage her surgeon, her hospital, the American College of Obstetrics and Gynecology and the Society of Gynecologic Oncologists in a discussion about the dangers of morcellation, to no avail. One change.org petition, three Wall Street Journal articles and one New York Times article later, the president of the Society of Gynecologic Oncologists wrote a letter in the scientific journal Lancet Oncology that while Dr. Reed's case was unfortunate, the use of morcellation is fundamentally sound.3

In developments reminiscent of the Zion events, morcellation now appears to be in  jeopardy; the FDA recently issued a warning against the use of morcellation in hysterectomies.4 Johnson and Johnson, the largest maker of power morcellators, has halted sales and recalled all of their devices in use worldwide.5 The Cleveland Clinic and  Massachusetts General Hospital have placed severe restrictions on the use of morcellation in surgical procedures. It seems that gynecologic surgeons' having turned a deaf ear is leading to externally imposed constraints on how they practice their craft.

The cases of Libby Zion and Amy Reed are trying to teach us something, if only we would listen. If we do not meaningfully engage patients and their families in discussions about how to change medicine, that change will instead be visited upon us. Rather than closing the door on patients as change agents, we should follow the Beatles' advice: "Open the door, and let 'em in."


1.         Asch DA, Parker RM. The Libby Zion case. One step forward or two steps backward? N. Engl. J. Med. 1988;318(12):771-775.

2.         Alpert JS, Frishman WH. A bridge too far: A critique of the new ACGME duty hour requirements. Am. J. Med. 2012;125(1):1-2.

3.         Goff BA. SGO not soft on morcellation: Risks and benefits must be weighed. Lancet Oncol. 2014;15(4).

4.         U.S. Food and Drug Administration. FDA discourages use of laparoscopic power morcellation for removal of uterus or uterine fibroids. 2014; http://www.fda.gov/newsevents/newsroom/pressannouncements/ucm393689.htm. Accessed 8/17/2014.

5.         Kamp J, Levitz J. Johnson & Johnson Pulls Hysterectomy Device From Hospitals. Wall Street Journal. 7/30/2014, 2014.