Why some patients refuse care

Vince Hamilton has no legs.

For that matter, he has lost the tips to most of his fingers as well.  It made opening soda cans almost impossible.  So when I saw him for the first time, my immediate reaction was one of sympathy.

He had been admitted from a nursing home with a swollen red finger nubbin.  It wasn’t hard to figure out it wasn’t his first time around this rodeo from the absence of limbs.

It showed in his attitude.

He preferred to be stark naked.  He would only answer in “yes” and “no” staccato.  He didn’t want a relationship.  He would throw hospital gowns into the nether reaches.  To show displeasure, he would fling excrement.  Nurses wanted nothing to do with him.  He wanted to be left alone.

After another surgery to evacuate infection, he was placed on antibiotics.  Because there were concerns of osteomyelitis, he was determined to receive them for a prolonged period.  On postoperative day one, he started to refuse care.  He would only allow wound cleansing and dressing changes.  He wanted to be sent home.

The nature of modern medicine predicts its inability to understand the basis of why someone like Vince Hamilton would refuse some care but allow others to occur.  Thus, there was a physician taking care of his infection, another his cardiac issues, another his diabetes.  Yet another was called for his “non-compliance.”  Perhaps this is defensive medicine at its best.  Aren’t we all purposefully out there to do harm?

Vince had a surrogate listed on his paperwork.  Unfortunately, no one could reach this person.

I approached Vince with trepidation, uncertain what outburst would befall me.  What worked in my favor – Vince disliked men.  Brief interactions in today’s version of doctoring make it hard to establish rapport.  It is compounded by a corporate initiative, doing more with less, hiding behind the overarching slogan of “it takes a village.”  We are asked to model the Toyota kaizen way, making the care of human beings align with the manufacturing of Camrys, Sentras, and Highlanders.

There is already a fair amount of distrust of things medical (embodied in today’s general reluctance to receive the COVID vaccination, even amongst healthcare workers).  Trust is a tricky thing to earn.  It seemed insurmountable when it came to Vince Hamilton, a hardened, bitter, imperfect version of his automobile counterpart.  Fortunately, he was a captive audience.

“Listen Vince, you do know we need to give you antibiotics for the infection, right?”

“I don’t need no stinking antibiotics.  They are poison,” he replies.

“Without them, the infection could get worse, and you could die.”

Vince Hamilton retorts: “I ain’t going to die, not of this.”

I have to say Vince wasn’t far off.  I estimate 12 attempts at saving his life, judging from the paucity of extremities, more if I were to include the presumed initial attempts at limb salvage.  Vince, in his sixties, had developed a liking for Lucky Strikes and Marlboros since puberty.  That, in addition to diabetes, had taken its toll.

On my second interaction, I walk into a darkened room.  The bedsheet was over his head.  Lunch sat untouched.  When asked why he didn’t eat, Vince tells me, “I can’t eat that sh*t.  It’s bad for my diabetes.”  Sure enough, we were feeding this legless, fingerless, diabetic man with peripheral vascular disease, a plate of pasta with carbonara.

With my peace offering of a few cans of diet Sprite (we are fortunate to have fingertips and opposable thumbs), I ask him: “Vince, why don’t you want us to take care of you?”

Visibly irritated, Vince points to his naked, legless torso and says: “Look at this hell hole I am in.”

I took that to mean we did take care of him and look where he has ended up: legless, fingerless, void of dignity, hopelessly lost in a system where benevolence meant we always knew what was best for people.

I am not one to dismiss accountability.  Vince Hamilton, I surmise, has never been an angel.

Sometime in the life of Vince Hamilton, someone in the medical establishment had determined he was incapable of making decisions that affected his health and his person.  Thus, a surrogate had to be appointed to aid in that capacity.

When I asked about this surrogate, Vince became quiet and then erupted: “I done gone to court and told the judge they’re full of crap and the judge agreed with me!”  It made sense we could not reach this person.

I admire Vince Hamilton’s spirit.

Void of half his limbs, unable to do much without the aid of another human being, Vince was determined to wrestle some control over his life and the remainder of his body.  It made me think about the Vince Hamiltons of the world.  They made no rational sense in our medical narrative, one of paternalism, of pedagogy.  They were the non-conformers, the challenges we have little tools to address, other than compartmentalize, silo care, deem them unfit to care for themselves.  In her response to my decision to discharge Vince, the doctor taking care of his “non-compliance” writes and underscores she disagreed with my assessment and that the courts would need to be involved because Vince could not understand what refusing care amounted to.  Vince’s parody of a life in Groundhog Day; a day that keeps repeating itself. Ad nauseum.

Vince did not want sympathy.  Although it wasn’t in my core to condone any of the poor decisions he has made that led him to becoming legless, fingerless, and hopelessly dependent, Vince, nevertheless, had the right to make them.

I let him know I would send him home.  As I turned to leave, Vince asked me for more Diet Sprite.

“Please and thank you,” I said.

Quietly, Vince looked up, his unkempt fringe draping over his sunken face.  I caught a glimpse of his bright blue eyes.

Without vindictiveness, he said: “Please, and thank you.”

Edna Wong McKinstry is an internal medicine physician.

Image credit: Shutterstock.com

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