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The chart above is the summary of some questions from the very famous longitudinal study, The John Hopkins Precursors Study.  It studies 1337 physicians.  The question above was "What would you want to do if you were terminally ill with brain damage or brain disease and could not communicate?  Overwhelmingly, the physicians wanted only pain relief and no other treatment.  "Make me comfortable."  In my experience and in the experience of other medical professionals, patients and their families answer very differently.  Why do they want something so different for themselves than what their patients receive?

The least desired treatment was CPR.  Most of us that have participated in "codes" understand.  On TV, it saves the patient 75% of the time.  In real life, 7% live a month, 3% have a good outcome (return to normal life), and many have multiple injuries (i.e. broken ribs) from CPR.  In the situation described, it is futile.  Many of the doctors would say that they didn't know how to communicate futility, what they thought was proper treatment when there was zero or nearly zero chance of recovery. They were uncomfortable with the discussion.  There is great uncertainty in what the "right way" would be.  There is fear that their motives would be misunderstood.  How can all of us get past this very substantial barrier?

--Dave

 


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