Feb 15, 2010

Understanding the Incomplete Medical Diagnosis

*names and some details have been changed to maintain and protect privacy*
If multiple sclerosis was an anatomy review item, I can just imagine Dr. Zeller pointing at the spinal cord and asking me, “Eva, what is the clinical presentation of multiple sclerosis?” After overcoming the anxiety of being “pimped,” my response would probably include symptoms such as: muscle weakness, difficulty in moving, difficulty with balance, visual problems, fatigue, and pain. Before meeting my patient volunteer, Casey, that’s how I characterized multiple sclerosis. The mental image in my head also included a wheelchair. This snapshot of multiple sclerosis is the medical mold that physicians give to their patients upon diagnosis, which I used to think was complete and scientifically correct.

After almost six months with Casey, I now understand that this sort of medical mold is incomplete. This medical mold is analogous to giving an unknowing sculptor a headless cast of Michaelangelo’s David and telling him that this represented Michaelangelo’s complete masterpiece. What was missing in the medical mold of multiple sclerosis (MS)?

What was missing was Casey. Her empowering and encouraging relationship with Dr. Osuco, the optometrist who made her initial diagnosis; the negative recommendations she received from physicians that told her to quit nursing school because she had MS; her steady and rapid inability to walk up flights of stairs; the finality and fear she felt when researching more information about her condition; the shame of losing the ability to spell simple words; the unbearable embarrassment of urinary incontinence; the feeling of helplessness as her right side got weaker; the difficulties of maintaining a treatment regimen that seemed to fundamentally change her personality; starting every date with “I have MS”; shopping for life insurance plans along with her elderly mother; the loss of friends because they just couldn’t handle it; designing a plan for “when things get to that point”; doctor shopping and coming across the kind and comprehensive care that Dr. Richardson provides; temporarily losing hearing in her right ear and worrying about its implications on her MS; letting go of managing the disease on her own and instead working with Dr. Richardson's team; navigating how others view her given her very normal appearance but serious condition, trying not to mention her occupation as a nurse unless it means better care for her and her family; meeting other MS patients at varying degrees of disease progression who are all fighting and living quality lives; negotiating the risks and benefits of a high-risk drug that drastically improves quality of life but can cause a deadly brain infection; being the primary caretaker for her elderly mother who is surviving on an oxygen tank and two developmentally challenged foster children; working as a nurse nearly full time; her strong beliefs to advocate for quality and patient-centered care; and lighting up the room with her warm smile. That is the complete picture of MS.

How can we as future physicians learn how to see the complete picture of a disease? We need to be aware that our list of symptoms is only a subset of factors that can instigate tremendous challenges and change on another life, learn how to talk to patients about their values and greatest concerns, and integrate those values and concerns with the treatment plan. By laying a foundation of trust and building a strong partnership with patients, we can begin to cross the gap between the stigma that we create and the reality of illness in an individual. My experience with Casey has taught me these important lessons and I hope to never forget them as I continue in my training.

Many thanks.

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