Diversity and Care

There are some things you learn from books and school. Some things you learn from others’ experiences. Some things you have to live through to really understand. Finally, some things you learn through the collective memory of growing up in a culture, and with a history that is passed down from generation to generation and that is reinforced as part of your growth and development.   In healthcare, we learn from patients and others in need every time we interact with them.  However, what we learn and how we learn will always be limited, to some extent, by our own lack of having lived through the experience and by having a different collective memory -- no matter how caring, skilled and empathetic we are.  I am reminded of this every year at Martin Luther King Day as, for me, that day is the embodiment of my belief that we must acknowledge how we are different in order to respect and appreciate the unique characteristics of each person and the collective memory that shapes each one of us.   

My own collective memory is shaped by the reminder -- every year at Passover -- of my tradition that I was a slave in Egypt.  It is shaped by being an inheritor of Abraham, who was a stranger and also welcomed strangers, as I am kind to those who are strangers as they arrive on these American shores and as they migrate across our country.  My memory is shaped by Emma Lazarus’ words on the Statue of Liberty to “Give me your tired, your poor, your huddled masses yearning to breathe free”; those words inspired my parents as they came to the United States, passing through Ellis Island and New York Harbor. It is shaped by my remembering my uncles and aunts who perished in the Holocaust and truly feeling their pain and their helplessness.  I can’t help, when I meet people, wanting to know if they are “members of the tribe” -- fellow Jews -- and I make no apology for that desire. 

On Martin Luther King Day, I think about those friends and fellow Americans who lived through slavery, repression, and bigotry -- and who still live through it -- sometimes directly, but even more often through the collective memory that is part of their unique heritage. I think about our need as a society to address not only the reality of bigotry and intolerance, but the feelings and the values that this memory invokes in all who share it. This type of collective memory is not limited to race and religion, but also is seen in gender and sexual preference.  Women grow up with a shared memory of struggling for the right to vote, of being blocked from education and opportunities, and even of the unique aspects of childbirth and motherhood, for example, that men can never fully incorporate into their own psyche. 

This weekend I had a vivid example of that difference in experience and collective memory when I had the opportunity to attend a fundraising reception for Spelman College, a historically black college for women in Atlanta.  I spoke to a bright idealistic young woman --originally from an upper-class neighborhood in the San Francisco Bay area -- who told me that the decision to go to Spelman was “the best decision I ever made” because growing up, she was always just the “smart black girl” at mainly white schools. At Spelman, where everyone was a “smart black girl,” she was able to find her own individuality and set her goal toward being a doctor in Oakland. 

Two articles caught my attention as I thought about all this.  The first is a short study entitled “Minority Physicians’ Role in the Care of Underserved Patients: Diversifying the Physician Workforce May Be Key in Addressing Health Disparities.”  The study points out that non-white populations have a much higher proportion of non-white physicians and makes the argument that to address underserved nonwhite populations, we have to train more nonwhite physicians.  “Nonwhite physicians provide a disproportionate share of care to underserved populations.  Hence, increasing the racial and ethnic diversity of the physician workforce may be key to meeting national goals to eliminate health disparities.” That young woman at Spelman is headed toward filling that need for nonwhite physicians, and we should be grateful to her and to Spelman College for that commitment.

 

When I was in practice on the south side of Chicago, the majority of my practice consisted of black Americans.  I realized that while I believed I could relate well to my patients by digging into my own collective memory of being the Jewish minority, I could never fully understand the unique generational memory that my patients had. I had the good fortune of taking that as a challenge to learn from them -- and that helped create the relationship between me and my patients.  At the same time, I know that my physician colleagues who were black could relate and be trusted in a way that, for me, could only come with time and work, and even then, could never match the brotherhood that was possible when the collective memory was fully shared. 

At the same time, the differences between us cannot stop or impair care from happening. The bigotry that sometimes accompanies group identification that is too strong must also be acknowledged when we care for people in need.   Dr. Meghan Lane-Fall writes about the dilemma of a black physician and a white bigoted patient in an article entitled “Accommodating Bigotry.”  The question she asks is whether patient autonomy and patients’ right to make decisions for themselves is so important that issues of bigotry should be sublimated to the patient’s right to decide on the professionals caring for them.  She writes, “Does patient-centered care, then, justify tolerating bigotry?  In my opinion, yes.  I cannot countenance bigotry and other forms of prejudice, but my discomfort with a patient’s belief does not trump their right to specify the conditions of their care. It is my hope that by affording all patients with the respect that was so often denied to my forebears, the questions I have considered here will eventually become irrelevant to the practice of medicine.” 

I share Dr. Lane-Fall’s hope that the question she asks will be unnecessary, and at the same time, do not expect or even want a world in which there is only one collective memory and set of values that all cultures agree on.  For me that would be a boring world indeed.  Instead I hope that we develop the capacity to acknowledge and celebrate our differences. The part of my collective memory that is distinctly American is a strong, almost religious, belief in equality of opportunity and pluralism.  Acknowledging that while there may be one path for me, others will have different paths that are as valid and as strong as mine.  That is the American dream and the American ethos.  I hope in healthcare and in all aspects of life in these United States, we come to a point at which we celebrate the pluralism, recognize those differences, and plan and act accordingly. We should encourage more diversity in the healthcare workforce, on boards of directors and in the “C” suites of corporations -- and see it as the strong positive it is. It is, in many ways, what makes America so great. 

Guidelines, Complexity and Headlines

Guidelines are a way to systematize medical knowledge in order to make good medical care more accessible.  A single doctor knowing the right way to manage a person’s specific problem is wonderful, but scaling that single interaction into the correct care for everyone is a challenge that guidelines are meant to address.  But healthcare providers must also correctly apply those guidelines in a unique manner for the specific person seeking care.  That is actually a very difficult dilemma – one that makes the communication and use of these guidelines prone to errors. For a guideline to be useful, it must support the humanism that good physicians and other health professionals bring to the table, not substitute a rigid single approach that may actually impede care for those in need.

Every time a new guideline is published in a medical journal, the news media feels compelled to share that expert advice.  I admit to some frustration, not by the effort to make this information available to the public (it should be), but by the compact messaging of a headline that results in misleading information.  I worry that this end result implicitly supports a rigid approach and leaves out the complexity and the unique application that should be an integral part of the way any guidelines are applied. 

A December 18, 2013 USA Today headline read: “Advice would put fewer Americans on blood pressure meds.”  The article highlighted the new guideline developed by the 8th Joint National Committee (JNC8) on the management of high blood pressure.  The news article made it appear the experts were recommending decreasing the use of hypertension medication.  It simplified extremely complex work by an expert group and may have unknowingly misled the public about the recommendations’ true nature. 

Guidelines like this rate the recommendations within the guidelines on the basis of how strong the evidence is that they are likely to produce benefit.  In general, while a number of groups produce guidelines, the ratings systems all tend to be similar. In general, their recommendations are letter-graded, ranging from “A” (which is a “strong recommendation,” with “high certainty based on evidence”) to “D” (which is a “recommendation against”) or “E” (“expert opinion without evidence)

The grade a particular recommendation receives is based on a consensus methodology and is more art than science. 

What the news reports don’t show is the strength of each recommendation within the guideline.  So, with the nine recommendations in the high blood pressure guideline, only 1½ are A (“strong”) recommendations.  Many of the other recommendations within the JNC8 hypertension guideline are rated “E,” which means that there is no evidence for the recommendation -- that it is only based on the opinions of the experts on the panel.

A December 30, 2013 Wall Street Journal article focused on differentguidelines: “U.S. Panel Recommends Lung-Cancer Screening – Current and Former SmokersAges 55 to 80 Should Get Annual CT Scans, U.S. Preventive Services Task Force (UPSTF)Says.”  In this case, a new guideline that generated much controversy was presented as settled fact. 

The new USPSTF guideline was, in fact, given only a “B” recommendation -- one that is only of moderate benefit based on the evidence.  The guideline recommends that adults age 55 to 80 who have a 30-pack-year smoking history and currently smoke or have quit within the past 15 years receive an annual lung cancer screening with a low-dose computerized tomography (CT) scan.  ”Pack years” are determined by the number of packs per day a person smokes, multiplied by the number of years they have been smoking.  Thus a person who smokes one pack a day for thirty years is a 30 pack year smoker and so is a person who smokes two packs a day for fifteen years.

What the Wall Street Journal also does not mention is that two accompanying editorials in the Annals of Internal Medicine -- where the new guideline was published -- implicitly challenge the “B” grade as being too strong based on the evidence reviewed.  Why? It turns out that 95% of all positive CT results do not lead to a cancer diagnosis. The committee may have minimized the risks of false positives in setting the recommendation as a “B.”  They also assumed only the right people would be screened.  As the authors of one of the editorials stated, “How patient selection actually occurs is worth careful consideration, because ample evidence shows underuse of cancer screening in populations for which it is indicated and overuse in those for which it is not.”  Thus the headlines, which attempt to inform the public about new thoughts on high blood pressure and screening for lung cancer, may actually confuse rather than inform. 

All this both gives me hope and makes me nervous.  I am heartened by the fact that guidelines are getting more complex and more specific to sub-populations of patients, and more often based on strong evidence rather than solely on opinion.  At the same time, I am nervous about their implementation. They are becoming harder and harder to communicate to those who would most benefit – and more difficult for physicians and nurses to use in daily practice.  No doctor can remember all the countless recommendations within those hundreds to thousands of guidelines. 

To properly implement guidelines and their recommendations, we need to use smart electronic medical record systems --and I contend those types of systems do not yet exist.   Healthcare professionals need to come to an agreement as to how they’ll use recommendations that have less than “A” grades.  And ultimately, we have to find a way to use these the guidelines effectively and uniquely in a 10-or 15-minute office visit in which we may need to use multiple guidelines with multiple recommendations. 

My headlines for stories about new guidelines would differ from those we see in USA Today and the Wall Street Journal. In fact, I could sum up most news stories with a single headline: “Evidence-Based Guidelines Getting More Complicated, Harder to Use and Understand.”  This means we all need caring, thoughtful health professionals to intelligently use guidelines in the context of a single person’s life more than ever. We also need the right technology to facilitate their use.  And finally, we need better public education on what guidelines really do mean, and not only the simple headlines that hide complex facts.