Thursday, May 24, 2012

O Brother, Where Goest Thou?

Have you ever assessed a patient, weighing in your mind the number of  co-morbidities present and their severity, and realized with a jolt that if things don't change right sharpish, your patient will be a former patient?

On a Christmas weekend many years ago, I stood by  Eric's hospital bed.  He liked his room dark, lit with only a nightlight after 11pm so I did not snap on the overhead light.  That night the room was suffused with a glow from a miniature Christmas tree hung with tiny packages and ribbons.  From beneath a plaid blanket brought from home, Eric watched me approach with several syringes and alcohol wipes.  Where once we had joked and talked about his tv programs, tonight he managed only a wan smile of recognition.  

Eric was no older than 30; he had once had a profession but gave it up as the illness made simply getting out of bed an ordeal.  He had an intestinal condition...nausea & vomiting...weight loss...inability to gain a meaningful amount of weight...intractable pain...and insomnia.  His diagnosis didn't seem (to me or anyone else) sufficiently grave to cause a young person to waste away before our eyes.   

This condition waxed and waned over the course of five years.  He was hospitalized when the pain became too much to bear or he was unable to keep down any food.  Once he came in with a brisk GI bleed and passed frank blood for days.  Each time he was discharged he recovered, but never fully; then would come a relapse.  

He was not a favorite Frequent Flier.  Some of the staff disliked his continual demands for narcotic pain meds, coupled with whatever anti-nausea drug and sedative the doctors ordered, as often as he could get it.  He was a timekeeper, knew exactly when the stuff was due.  It was seldom enough to allow him a full night's sleep or full relief from pain and nausea. 

As my eyes adjusted to the low light this Christmas night, he threw back the coverlet, revealing a shockingly emaciated body.  I came to an abrupt and horrifying reality; he was back again, no improvement, back on mega narcotics, still insomniac, no definitive diagnosis.  Where are you going with this? I asked myself.  I have learned since to be wary of the question.  
To be privy to the end of human life, whenever it presents itself, is a burden and an honor. Most of the patients know their time is short.  Yet some people go along with the flow of their disease process without understanding what is going on or how serious their illness has become.  Think of COPD patients who leave the hospital and continue smoking, or diabetics with every -opathy possible who will not control their diets, check blood glucose only "when they think of it", and take their meds the same way. 

Silly of me to talk as if attention to regimen is the whole answer.  No one gets out of here alive, someone observed.  So it's true we are all on the same road to what we hope will be a good death in the end.  It is my hope for those I care for that they will become co-creators in their good death, not one day stunned to find themselves in line at the pearly gates.  

The discussion that follows the question, "Where are you going with this?" is not a comfortable one, which is why there are palliative care teams and hospices to guide the process.  Understanding that recovery is not possible allows room for other kinds of care just as important as vigorous treatment.  We got a note of thanks from the family of a patient who had gone to hospice.  The family had difficulty facing The Discussion, which they had to do in their parent's stead; dementia had left the parent sweetly senile.  The parent is at home under hospice care now, with less medical intervention (fewer needle sticks) and surrounded by loving family & staff.  Sometimes the hardest thing to do is the best for the patient.

We are not always talking about the end of life; we often need to teach cause-and-effect of a patient's condition and encourage him to take positive measures to keep whatever function he still has.  Some patients will take your information as gospel and they will recite it back to you with full compliance by the third visit.  Some only get it when they have had another  exacerbation...or three...or six.  
As a nurse develops a "spidey-sense" when things are not right, I hope the other sense is also allowed growing room, so that when a nurse sees signs of denial or end-of-life they are not afraid to begin the conversation.   I wish I had understood enough to sit down and talk with Eric that Christmas, for he was dead by the end of January.  "Where are you going with this?" may be one of the most important conversations your patient will ever have.


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