Activated, Empowered Patients Are Not New

One of the most inspiring athletes of the 2012 London Olympics is American swimmer Dana Vollmer who won the gold medal in the 100 meter butterfly by being the first woman to finish that event in less than 56 seconds.  Vollmer exemplifies the engaged, empowered patient, and her story reminded me of three such patients who took charge of their health long before there was a formal participatory patient movement.  These three pioneers were President Franklin Delano Roosevelt, writer Norman Cousins, and actress Patricia Neal.

When Vollmer at the age of 15 was diagnosed with long QT syndrome, it most likely meant the end of her competitive swimming career.  The usual treatment for this genetic cardiac electrical disorder that can cause sudden death due to supraventricular tachycardia is to implant a defibrillator in the heart.  The risk of sudden death in competitive athletes with this syndrome is up to three times greater than in sedentary patients. 

However in a dramatic example of how treatment must be tailored to the individual patient, Vollmer and her family decided to continue competitive swimming training and to always have an external defibrillator available should the need arise.  It never did, but still the diagnosis weighed on Vollmer’s mind:

“’I could die, my heart could just stop…There were definitely times it was scary, as much as I tried to block it out. If I got lightheaded, I would associate it with long QT,’ she says.  Part of Olympic training involves underwater work, and for Dana, having to hold her breath to the point of feeling lightheaded was one of the hardest things to do. ‘Slowly but surely I never fainted and never had symptoms.  It just got further and further from my mind.’”  (http://well.blogs.nytimes.com/2012/07/31/overcoming-a-heart-condition-to-win-olympic-gold/)

After being told by Boston Children’s Hospital expert Dr. Robert Lovett that there was nothing he could do for the patient’s polio, Franklin Delano Roosevelt created his own rigorous exercise rehabilitation program. When he purchased a hotel and pool facilities in Warm Springs, Georgia, other polio victims came to participate in his unique exercise program that took place in the warm springs pools. Roosevelt even published his clinical experience in the Journal of the South Carolina Medical Association and proposed that he present his work at the 1926 American Orthopedic Association annual meeting.  When the meeting planners rejected his proposal, FDR went to the meeting anyway and “secured a commitment from the orthopedists to evaluate the Warm Springs program.  The association made good on its promise and confirmed the program’s positive effects.”

“’During that first year, I was doctor and physiotherapist rolled into one,” FDR would later boost.  David Blumenthal and James A. Morone in The Heart of Power:  Health and Politics in the Oval Office (Berkeley:  University of California Press, 2009) concluded their discussion of this most empowered patient by writing, “No president has ever come closer to practicing medicine without a license than Franklin Delano Roosevelt did in the 1920s in rural Georgia.”

Norman Cousins, the editor of the Saturday Review for 35 years and the author of 15 books, described in Anatomy of An Illness as Perceived by the Patient (New York: WW Norton, 1979) how he decided to treat his ankylosing spondylitis by checking out of the hospital and into a hotel to watch Marx Brothers movies.  He stated, “Medical treatment is a 20-point partnership – the physician has 10 points, the patient has 10 points.  If patients are given the idea that they can do something, they take the treatment better.” (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2154152/) After the publication of his book, Cousins joined the faculty of UCLA School of Medicine where he examined the usefulness of patient engagement and “’found myself being pushed into the role of ombudsman for patients who were complaining about their treatment.’” ((http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2154152/)

In 1965 the 39-year-old film actress Patricia Neal suffered a severe stroke that resulted in a coma that lasted two weeks.  When she woke up unable to speak, unable to walk, and paralyzed, her neurosurgeon said, “’I don’t know if I’ve done you a favor’” by keeping you alive.  Neal’s husband, novelist Roald Dahl, improvised “a rigorous program of confronting her with tricks, games, and puzzles to improve her memory and speech.” (http://www.nytimes.com/1981/12/08/arts/tv-patricia-neal-s-victory-over-crippling-stroke.html) By not giving up and by not listening to the advice of their physicians, Dahl and Neal changed the way stroke patients are treated and eventually supported a special rehabilitation department in her hometown of Knoxville, Tennessee. Two years after her stroke, Neal starred in the movie The Subject Was Roses.

Vollmer, FDR, Cousins, and Neal all remind us that activated, engaged patients do better clinically and often can surprise themselves and their doctors by their efforts.