LIBERATING DAD — Treat the Person, Not the Diseases

During the past six weeks insanity for our family has become the norm.  My 91year old Dad's hospitalization has been replete with multiple diagnoses, procedures, complications, medication reactions and close encounters with death. Perhaps no event has been more bizarre than my decision to stop several of  his antibiotics and get him home.

Last weekend I was "on call" for my medical group to actually visit my Dad as his physician.  It is a position I do not advocate for any physician/offspring but I had no choice–It was my weekend to work.

Of course following his condition closely since his admission to the hospital I was alarmed by his progressive weakness and lethargy.  He hadn't gotten out of bed to eat or walk all weekend.  His speech was barely audible and slurred.  He slept.

Now I have neither the space or intention of reviewing his problems.  They were complex, life-threatening.  Multiple specialists were prescribing medications and procedures.  None can be criticized for lack of diligence or concern. 

But I observed that Dad was actively dying.  My only thought was my awareness that he has always been extremely "sensitive" to antibiotics and I decided to discontinue several of them.  I did not consult the Infectious Disease experts who prescribed them.  I knew they would not agree with my decision.

But I felt that it was imperative that some change be made and I was willing to accept the possibility that I was wrong and that he would die anyway.  I weighed the choices.  Do nothing and prepare another eulogy. (I had already done this several times during the prior weeks), or hope that some of his weakness and lethargy was secondary to his medication.

If so, I could hope to finally get him out of the hospital and home.  To accomplish this would be a victory for all of us.  To die at home beats the hospital every time.

Well miraculously I seemed to have guessed right.  By the next day he was able to sit in a chair and eat.  He was even able to stand and use his walker a little bit. When we planned to move him to an active inpatient rehab center in the hospital he looked at me and said, "get me out of here".  I understood that he had finally "had it".  I felt strongly that his will to live which had carried him to this point was in jeopardy of dissolving.   Stay and die.  Leave and have a chance to survive with some quality of life.

My son and I "liberated" him two days later.  As weak as anyone could be he "pushed" himself to be OK to leave the hospital.  When he saw sunlight and breathed fresh air for the first time in over a month, we all knew that the plan had worked.

It is still less than a week since he went home.  We have full-time help and he has visiting nurse services.  But he is eating, sleeping, exercising, wearing clothes and full of hope.

Whatever follows will be just fine with us all no matter what.

But in this medical environment, how many patients have an advocate to make these kind of decisions? How many families will disagree with their physician's orders and take charge?

There are few family  or primary care doctors who will risk what I did. They tend to defer to each specialist out of fear of the consequences.  I understand and respect their defensive posture.  Unfortunately the patient can suffer when they are seen as a conglomeration of disease states and not a person.

This is an isolated case of a doctor/son who was in a position to take a huge risk.  The only lesson hear is to take a look at the big picture.  Assess the risk of treatment and being hospitalized versus the benefit of being out of the hospital with and at least some quality of life.

None of this is easy.  But it needs to be looked at.

It might just give some serenity and hope to what time remains.

2 thoughts on “LIBERATING DAD — Treat the Person, Not the Diseases”

  1. All I can say is, WOW! I am so grateful for the sake your father you took this leap of faith, Steve. It is inspiring to read about how much better your father is doing. I’m so sorry to hear about everything that Frank and the rest of you tending to him have been through these past few weeks. I knew things were serious but did not realize just how dire they had become. I’ll be thinking of all of you.

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