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Sunday, April 3, 2011

Difficult Access and Lack of Continuity Delays Making a Correct Diagnosis

A close friend of mine is hospitalized.  What happened to him merits a blog.  Several weeks ago my friend developed numbness in his hands, feet and tongue.  Not one who particularly fancies seeing doctors, he called his primary care physician, who he had recently seen for a check-up in honor of his 50th birthday. His own doctor was not available urgently so he saw his doctor’s partner in the same practice, who he had never met.  A history, neurological exam and a battery of blood tests were performed, revealing a low vitamin B12 level of 170.  My friend was told that vitamin B12 deficiency was the likely the source of his troubles, and was started on oral supplements.  However, over the next several days he developed worsening numbness and weakness in his legs.  Two days later he was felt increasingly unwell—now also lightheaded and faint with standing.  Unable to speak with his physician, he went to the emergency room on Friday afternoon.  After many hours he was assessed by a neurology resident who consulted with a senior neurologist by phone.  My friend, who described lightheadedness and muscular weakness, apparently did not have many findings on exam, but lacked proprioception (position sense), which was the reason he was told he was having difficulty walking.  He was sent home and instructed to take B12 injections.  On Monday he called his PCP back for an appointment, alarmed by rapidly evolving symptoms of numbness and weakness. He was told that no appointments were available, so he decided to walk in to the office and asked to receive an injection of B12, which he believed would make him better.  He left without being assessed by a physician.  Throughout the course of the week he became progressively weaker in his legs and was not able to drive to work.   By the end of the week he fell when he tried to get up from a chair and noticed a change in his voice.  On Sunday, ten days after his first symptoms developed, my husband called to see if my friend could play tennis.  As my friend declined, explaining the problem, it became readily apparent to us (who are both physicians) that this was not B12 deficiency.  We pulled some strings and managed to get him seen by his own primary care physician the following day (he had been given a follow up appointment in ten more days).  We were suspicious that this was Guillain-Barre Syndrome, which was the confirmed diagnosis two days later, after a thorough history, physical exam, lumbar puncture, electromyogram and nerve conduction studies were performed. Guillain-BarreSyndrome is an uncommon condition (1-2:100,000) where the body’s own immune response attacks one’s nerves, causing “demyelination.”  In severe cases paralysis and respiratory failure can occur. My friend is now unable to walk and is receiving intravenous immunoglobulin therapy.  Needless to say he has received ample good attention while in the hospital and, being very easy going, he has nothing but good things to say about his physicians and care.  The prognosis for Guillain-Barre Syndrome is very good, but can require up to 6 to 12 months for a full recovery.
In my view, there are several lessons here.  These were all excellent doctors that my friend encountered.  So what was the problem?  I have only heard my friend’s point of view, but here are some thoughts:
  • He was not seen by his own primary care doctor for his urgent complaint.
  • His primary care physician had met him only twice. Though a patient of this physician for at least five years, he had seen 3 or 4 different providers within the practice for all previous urgent issues because of a lack of available appointments with his personal physician.
  • His initial diagnosis may not have been presented as a hypothesis.
  • He may not have been given adequate instruction about what to do if his condition worsened.
  • He was not seen in the emergency room by an attending neurologist.
  • He was not given neurology follow-up.
  • His complaint of weakness may not have been taken seriously because it was not clearly perceived on his physical exam.
  • When he worsened no one initially questioned the accuracy of the diagnosis of B12 deficiency.
  • When my friend came to the primary care office for a second time, after his ER visit, with worsening symptoms, he was seen only by a nurse for the B12 injection (there was no MD appointment available).
  • The ER did not communicate directly and promptly with either the physician who had seen him several days prior, or his primary care physician.
  • My friend trusted the original diagnosis and that the system would take care of him adequately.
  • My friend did not want to be perceived as a difficult patient or as a hypochondriac, so decided to wait it out.
This case is a near miss.  My friend got the care that he needed, but there was delay, inefficiency and poor communication.  It’s a shame that we, as primary care physicians, have become so busy that we cannot care for our patients’ urgent needs. Fortunately, my friend was well-connected.  Making a diagnosis like Guillain-Barre Syndrome and helping a patient receive timely and appropriate care is fascinating and is what makes primary care potentially so interesting and rewarding.  However, when access is limited, there are ineffective channels of communication, and continuity is lacking it’s tough for even excellent doctors to function well.  Atul Gawande has proposed checklists and team work as measures to improve hospital based care.   In the primary care world I can see that the majority of mishaps occur at times of care transitions because of poor communication between office visits.  Part of the problem is the ever expanding patient panels of primary care physicians who are so busy seeing their 20 to 30 patients daily that they are unable to manage any event that occurs outside of the context of an office visit.  Personally, I am not sure that even the best checklists, care teams, or electronic systems can make up for this lack of adequate time to spend with a single physician, who knows a patient well and is able to oversee care continuously throughout health and illness.

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