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13
Jul

Never a Quiet Breath

Dr D G Nichols “Never a Quiet Breath and the Power of Transparency”

The Bottom Line: The redefinition of professionalism to include transparent disclosure of outcomes transformed cystic fibrosis into a disease with hope. This “systems view” of professionalism can help all children.

 

My angle of vision widened as I pushed open the door to the treatment room.  A middle-aged woman, apparently all alone, wept quietly. The object of her grief then came into view.

On-Call in 1979

It was a very busy night, and I was the senior resident on call, when the nurses paged me to report that a three-year-old boy with cystic fibrosis had died. I was consumed with multiple admissions and sick children on all the floors, so it took me an hour to actually get to little Joey. When I finally reached the treatment room, the mother was standing a few feet away from the examination table where her 3 year-old son’s body lay. I reached out to offer some human contact, which seemed to be missing from her very small world.

“Dr. Nichols”, she sobbed, “I’m glad he’s dead. He never took a quiet breath his whole life. Every single breath was a cough or wheeze. His whole life was this struggle just to get air.”

The year was 1979, and cystic fibrosis began and ended in childhood. Today, the median life expectancy of a child born with CF is nearly 40 years.1

What transformed a disease marked by enormous suffering and early death into one where survival into adulthood is the norm?  Surely basic molecular research has made enormous contributions to the understanding and treatment of CF. However, the larger story is about the power of transparency as an act of professionalism.

Transparency as Professionalism

Transparency in this context means the willingness of the care team to disclose the outcomes of their care publicly.  The traditional concept of professionalism directed at the individual physician’s competence in such areas as confidentiality or informed consent will always be important. The good news is that, despite concerns about a crowded residency curriculum and inadequate faculty preparation,2 most residency graduates within the past 5 years feel more confident in their ability to adhere to standard professionalism concepts than did the cohort that graduated more than 5 years ago.3  However, several writers have argued for an enhanced “systems view” of professionalism in the face of enormous external pressures on the doctor-patient (pediatrician-family) relationship. 4,5,6

The systems view argues that the physician’s ability to improve the health of an individual patient depends on the ability to impact the layers surrounding the doctor-patient relationship, namely the rest of the clinical team, the health environment in the patient’s community, and ultimately the entire healthcare system.

Developments in the ensuing years since my night on call have vindicated the suffering of little Joey and the many others like him. Prodded by the Cystic Fibrosis Foundation, each CF center in the US has publicly disclosed the outcomes of its care -- life expectancy, pulmonary function, and nutritional status for many years. Best practices have been shared so that all clinical teams can benefit.  As a result, the overall care and outcomes for all CF patients have improved dramatically since my encounter with Joey’s grieving mother.

There are certainly barriers to measurement and disclosure of clinical results ranging from small sample sizes to lagging IT systems to economic competition among providers. But the overall goal of improved health for patients and populations cannot be achieved without physician leadership grounded in a set of values. Transparency signifies accountability and engagement with parents (which was critical to the CF successes). The principle of transparency applies not only to children with serious chronic illnesses but also to well-child care. Click here to view a YouTube video on the Well Visit Planner provided by the Child and Adolescent Health Measurement Initiative, which is based on American Academy of Pediatrics guidelines and for which Maintenance of Certification (MOC) credit from the ABP will soon be available. This resource is supported by a grant from the Department of Health and Human Services.

The learning environment has a profound impact on subsequent practice. If academic medical centers and residency programs become transparent in their clinical outcomes, then graduating residents are more likely to do the same in practice. Click here for a primer on Teaching and Assessing Professionalism developed by the Association of Pediatric Program Directors and the American Board of Pediatrics.

I will never forget the anguish of that mother who had witnessed so much suffering in her little boy. Cystic fibrosis physicians offer an inspiring example for all of us.  Once routine public disclosure of patient outcomes becomes a professional expectation, outcomes, including parent engagement, are likely to improve at a faster pace for all children.

This is what I think. Please let me know what you think by leaving a comment below.

 

David G. Nichols, MD, MBA
President and CEO  


References:

  1. Cystic Fibrosis Foundation. Cystic Fibrosis Foundation Patient Registry 2011 Annual Data Report. 2012:1–32.
  2. Lang CW, Smith PJ, Ross LF. Ethics and professionalism in the pediatric curriculum: a survey of pediatric program directors. Pediatrics. 2009;124(4):1143–1151. doi:10.1542/peds.2009-0658.
  3. Cook AF, Ross LF. Young physicians' recall about pediatric training in ethics and professionalism and its practical utility. J Pediatr. 2013;Epub(May 21). doi:10.1016/j.jpeds.2013.04.006.
  4. Lesser CS, Lucey CR, Egener B, et al. A behavioral and systems view of professionalism. JAMA. 2010;304(24):2732–2737.
  5. ABIM Foundation, ACP-ASIM Foundation, European Federation of Internal Medicine. Medical professionalism in the new millennium: a physician charter. Ann Intern Med. 2002;136(3):243–246.
  6. Swensen SJ, Meyer GS, Nelson EC, et al. Cottage industry to postindustrial care—the revolution in health care delivery. N Engl J Med. 2010;362(5):e12. doi:10.1056/NEJMp0911199.