June 23, 2014

Healthcare Observations from Parents Dealing with their Son's Catastrophic Illness

My neighbors Mark and Sue Medish have been dealing for over a year with the catastrophic illness of their son Vadim. The photo of Vadim was taken two years ago during a musicale showcasing homegrown talent at Mark and Sue's house on our cul-de-sac.

Stricken in the second semester of his freshman year at Harvard College, Vadim was eventually diagnosed with a rare autoimmune disorder called "paraneoplastic syndrome," which led to devastating encephalitis.

His hospitalization started March 26, 2013 at Boston Children's Hospital. A month later, he was transferred to Johns Hopkins in Baltimore. In September, after almost five months at Hopkins, he was moved to Children's National Medical Center in Washington.

Mark has kept friends and relatives informed with impressive weekly updates on www.caringbridge.org. In last week's post, Mark reported that he and Sue had a chance to share their thoughts at a neuro-immunology conference at Children's National.

Their observations are applicable to healthcare and treatment everywhere. Here's what they told the doctors:

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We commend CNMC, Drs. Beth Wells & David Wessel et al. for convening this group of highly qualified international neuro-immunologists. For us as parents, it may be the only good thing to come out of our son’s catastrophic illness (PND anti-Ma2 encephalitis) and other cases like his. A few short observations – we’ve been at 3 top U.S. hospitals for over a year.

1. Silos Are Inexcusable. True in all professions. We are in the digital information age and yet we often find experts reluctant to reach across departmental and institutional walls, mostly for reasons of specialization and vanity. Leaving patients to do crowd sourcing is not a good outcome… As Apple evangelist Guy Kawasaki said: “Be an information revolutionary: eat like a bird, poop like an elephant.”

2. Be Very Curious. As parents, we are fated to ask Why? It’s a question we will never answer. You who have chosen medicine have committed yourselves to asking How? How does the biochemistry of rare neuro-immune disorders work? How can it be stopped? How can it be fixed? You have a chance to answer these questions. But first you must really love the questions. Embrace the unknowns.

3. Practical Point on Neuro-Critical Care. Take advantage of what is already known. At one hospital, truly impressive work had been done on the optimal environment for neurologically impaired patients (what they perceive, how stimuli affect them, etc.) – but this knowledge had not been integrated into the mainstream of care. This goes back to the silo problem.

4. Translating “the New Brain Science.” We perceive a growing disjunction between all the hype about “the new brain science” (mapping the brain, etc.) and lack of progress in basic research leading to actual treatments that help real people. The latter is the purpose of medicine.

=> Systematic study of rare diseases such as autoimmune neurological disorders could unlock the hidden structures and deep secrets of many illnesses and cures. The case numbers are by definition small, but the research yield could be enormous. NIH has unique ability to aggregate cases for such research.

5. What Is Success? Reflecting on the state of medical science, an inspiring doctor recently wrote to us: “’Success’ in my profession is to develop understanding that will prevent tragedies like VM’s from happening again. ‘Success’ is to bring Neuro-Immunology to the 21st century… ‘Success’ in medicine or life – is to be free, free of norms, regulations, preconceived ideas about what the world or we should be, and to mindfully do the very best we can come up with, every moment at whatever level or capacity we are granted.” She is right.

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