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."

References

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.

Mentors need cultural competency, too - October 2014

A little white girl is born in suburban Chicago to two physicians. At her house, dinner table talk revolves around clinical encounters and research pursuits. Much is expected from this girl. She is not asked whether she will go to college, but where. After much deliberation, she has decided that she wants to become a doctor. From her parents, she knows exactly which tests to take, which experiences to seek out to make herself a more attractive candidate. She knows that she will have to work hard, but is confident that she will be able to reach her goal.

Consider another girl, this one black, born in inner city Chicago to unmarried parents with just high school diplomas. She is raised by her mother and grandmother and attends a public school where she buys subsidized lunch for 40 cents daily. At this school, on Career Day, she meets a plastic surgeon. To demonstrate her craft, the surgeon incises a raw turkey leg and sutures it closed again. The girl is sold; she now wants to become a doctor. But how does one become a doctor, and a successful one to boot?

Our nation's physician workforce has a distinctly different demographic profile than the population it serves. By and large, medical doctors are more white, more male, more heterosexual and less disabled than America as a whole. This difference is even more marked in academic medicine. The Association of American Medical Colleges notes in its annual report on medical faculty diversity that, although strides have been made in improving the percentage of women in academic medicine, addressing racial, ethnic and other types of under-representation has been more vexing.

Why, other than acceding to a vague sense of fairness, has diversity been embraced by academic medical centers? First, there is evidence that racial concordance is associated with increased patient satisfaction, adherence to care plans and improved outcomes. Second, physicians from under-represented groups are more likely to practice in areas serving patients with disproportionately poor health outcomes. Finally, scientists from diverse backgrounds approach research endeavors from different viewpoints. This may underlie findings that demographically heterogeneous research teams produce work that is more cited than do homogeneous teams.1

Historically, institutions have taken a pipeline approach to increasing diversity in medicine. That is, if more people from a given background are admitted to each stage preceding faculty appointment, diversity must necessarily increase. "Affirmative action" is a widely-used descriptor of programs adopting this model. Affirmative action and other admissions policies accounting for race, gender and other demographic factors have indeed increased the number of trainees at the college, medical school, and resident levels. At the faculty level, however, gains have been much less robust.

Perhaps in recognition of the pipeline strategy's limitations, some organizations interested in healthcare workforce diversity have turned their attention from recruitment towards retention of faculty from underrepresented backgrounds. But why are retention programs needed in the first place? After negotiating the hurdles of undergraduate and graduate medical education, why do some underrepresented physicians struggle upon faculty appointment? I believe that the answer is one of culture.

As with any culture, academic medicine has its own language, customs, and unwritten rules. Promotion depends on understanding and largely abiding by these rules that many of us do not know before we accept our first appointment. And, just like foreign travelers without tour guides, we are bound to have any number of awkward experiences before we get things right. Add to this the burden of stumbling in the presence of people who resemble the stereotypically older, white-haired male physician, and leaving the academy becomes an appealing option. 

Women may be at a particular disadvantage when it comes to succeeding in the academy. Setting aside the substantial concerns about integrating motherhood and professional identity, recent evidence suggests that the rule-following tendency that helps women excel in school hamstrings them in the professional world.2 Much like the first girl, above, we proceed through training by achieving the right combination of grades, standardized test scores, and extracurricular activities. After faculty appointment, though, our trusty formulae disappear. Left to our own devices as faculty, it is difficult to know how to apportion our limited time between family, clinical practice, teaching, scholarship, and university service. 

Yet another hurdle faced by women and people from racial/ethnic minority groups is the imposter syndrome, the feeling of inadequacy despite being objectively competent.3 The imposter syndrome amounts to an inner monologue detailing all of one's faults and warning of the inevitability of failure. Although people of all backgrounds experience this phenomenon to some degree, physical difference can serve to reinforce a sense of not belonging.

So how did I, the second girl with so many barriers to overcome, achieve some small measure of professional success? I was fortunate enough to have mentors who helped me navigate through the wilderness of higher education and academic appointment. From the high school English teacher who helped me apply to college when my parents could not, to the premedical advisor who encouraged me to apply to Ivy League medical schools when my thesis advisor cautioned against this, my mentors have encouraged me to dream impossibly big dreams and have shown me how to get closer to them.

The pivotal role of mentorship in academic success is a core concept behind the AAMC Minority Faculty Career Development Program,4 the Robert Wood Johnson Foundation's Harold Amos Medical Faculty Development Program,5 and the Executive Leadership in Academic Medicine Program,6 among others. These programs provide a cultural orientation to the academy, making explicit those rules that become stumbling blocks when they go unseen. With the help of mentors, participants are guided through the intricacies of negotiating, grant writing, publication and promotion. These programs boast impressive gains: participants have high rates of retention within academic medicine5 and demonstrate more leadership competencies than non-participants.6 The success of these programs suggests that this model is a promising one.

Of course, mentorship is necessary for everyone in academic medicine, from interns to department chairs and deans. Rather than imply that those from "over-represented" groups do not need guidance, I submit that minority (broadly defined) physicians should be paired with mentors who understand both the academic and cultural barriers to advancement. It is necessary but insufficient to meet "as needed", or to address solely those questions asked by the mentee. Mentees, especially those from under-represented groups, may not know what questions to ask. Merely having a minority faculty program is not enough to achieve the goal of improving diversity in the professoriate. Indeed, in their study of minority faculty development programs, Guevara et al found that only the more intense minority faculty development programs were able to achieve gains in the percentage of faculty from underrepresented backgrounds.7

It is equally important that mentees take an active role in the mentoring relationship. It is okay to not know, but not okay to suffer in silence. If the mentor-mentee relationship is not mutually fulfilling, either party should be able to break away. Academic medical centers can help in this regard, providing concrete expectations for mentoring relationships and facilitating re-pairings as needed. 

Ultimately, increasing diversity in the academy is not merely a matter of opening the door. It also requires helping people understand what to do on the other side of the threshold. Only when these expectations are understood by all can we achieve our ideal of a truly representative physician workforce.

ACKNOWLEDGEMENTS

I gratefully acknowledge the support and guidance of my many mentors, sponsors, and champions.

REFERENCES

1.         Freeman RB, Huang W. Collaborating With People Like Me: Ethnic co-authorship within the US. National Bureau of Economic Research Working Paper Series. 2014;No. 19905(published as Richard B. Freeman, Wei Huang. "Collaborating With People Like Me: Ethnic Co-authorship within the US," in Sarah Turner and William Kerr, organizers, "High-Skill Immigration" (University of Chicago Press), Journal of Labor Economics (2014)).

2.         Johnson W, Mohr T. Women Need to Realize Work Isn't School. HBR Blog Network 2013; http://blogs.hbr.org/2013/01/women-need-to-realize-work-isnt-schol/.

3.         O'Brien McElwee R, Yurak TJ. The phenomenology of the impostor phenomenon. Individual Differ. Res. 2010;8(3):184-197.

4.         Cora-Bramble D, Zhang K, Castillo-Page L. Minority faculty members' resilience and academic productivity: Are they related? Acad. Med. 2010;85(9):1492-1498.

5.         Ardery NL, Krol DM, Wilkes DS. Leveraging diversity in American academic medicine: The harold amos medical faculty development program. Annals of the American Thoracic Society. 2014;11(4):600-602.

6.         Dannels SA, Yamagata H, McDade SA, et al. Evaluating a leadership program: A comparative, longitudinal study to assess the impact of the Executive Leadership in Academic Medicine (ELAM) program for women. Acad. Med. 2008;83(5):488-495.

7.         Guevara JP, Adanga E, Avakame E, Carthon MB. Minority faculty development programs and underrepresented minority faculty representation at US Medical Schools. JAMA - Journal of the American Medical Association. 2013;310(21):2297-2304.

Cheating Death - April 2013

A North Carolina hospital found itself in hot water earlier this month after it unveiled a new marketing slogan: “Cheat Death”. The hospital’s administration apparently didn’t realize that the catchphrase might be considered to be in poor taste, but they were quickly apprised of this fact. As an intensive care unit doctor who routinely cares for dying patients, I was alarmed for a different reason. The idea that we can cheat death belies what all of us know to be true: Everyone dies.

As an intern fresh out of medical school, I encountered a patient in the emergency department who had new abdominal pain. It turns out that she was experiencing a rupture of her aorta, the largest, most vital artery in the body. Without surgery, she would die. With surgery, she might die, might be connected to a breathing machine for the rest of her life, or might have a long, complicated recovery. With her family surrounding her, she said, “I’m 90 years old. I’ve had a good life. I’m ready to go.” This woman understood that she would die at some point, and chose to go on her own terms. While I would like to say that most patients go the way that this woman did, the reality is far from this woman’s peaceful passage in the company of friendly faces.

I’m not sure how death came to be considered failure in American medicine. It puzzles me that in a society where most people subscribe to religions that teach of a glorious, perfect hereafter, we often exhaust every possible intervention, no matter how painful, to eke out a few more moments of “life”. There are, of course, situations when we are supposed to do everything. Consider the story, widely publicized, of young a pregnant mother at our institution who contracted swine flu. She was placed in a medically-induced coma and connected to a heart-lung bypass machine. It took her months to recover, but she eventually made it home and met her infant son. The heroics employed to get her through her illness were the right thing to do, and fortunately the patient had a good outcome.

Contrast this with what I see in the intensive care unit, week in and week out. Along with the people you might consider temporarily critically ill, we always have a few people that fall into what we call chronic critical illness. Imagine being connected to a breathing machine for months at a time. Sometimes delirium sets in, because you can’t sleep right in an ICU with the alarms ringing and machines hissing 24 hours a day. When your family and friends come to visit, they have to wear special gowns because you’ve been infected with a superbug that’s resistant to antibiotics. Is this “cheating death”? Maybe the ones being cheated are the patients who are unable to live life the way they want to, or families who cannot have meaningful conversations with their ailing loved ones.

I don’t mean to suggest that anyone who has a prolonged recovery is not entitled to aggressive medical care. I also don’t think that doctors and other healthcare providers should decide alone about the appropriateness of life-sustaining therapy. But there are cases when I know full well that a given patient is not going to get better. They won’t go home and relax on the couch reading the newspaper. Some patients will never be able to get back to the golf course or the garden. More important than my knowledge though, is that these patients’ families know it too. I see it in the resigned nods that I get when I explain that things aren’t getting any better, that in fact another problem has arisen.

What baffles me is that even when everyone seems to agree that death is coming, often no one is courageous enough to let it happen. We talk about “giving up”, about “pulling the plug”. I suppose that when we talk about death in terms of taking things away, it is only natural to resist. I prefer to think about “allowing natural death”, an acknowledgement that death is indeed part of the life cycle. While this concept doesn’t make end of life discussions easier, my hope is that it helps families not think that they are killing their loved one by changing goals of care. Perhaps this is my way of moving the discussion away from ways to cheat death and toward ways of living a fulfilling and meaningful life.