A family caught in a vortex of questionable medical care

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I am an ENT surgeon, a friend of the author, the patient, and their daughter, whose intervention saved his life. This is a smart, loving family caught in a terrible vortex of terrible medical care until they pulled themselves out, and a story that physicians must read, as we struggle to reinstate humanity and humility into our noble profession. Here is Paul’s tale, as told by his wife.

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On a mid-December evening, my husband Paul fell down our staircase, banging his head.  When I found him, he was fully alert and sitting himself up. The EMTs who arrived in the ambulance he didn’t want me to call, were optimistic about his condition, noting that, although in his eighties, he had excellent vital signs, sharp mental acuity, and no appreciable pain.  So, when I called to tell my daughter that he was in transit to the local ER, I reassured her that this was nothing serious.  I was wrong.

He had, in fact, shattered his neck, and was immediately transferred to the ICU.  Nonetheless, it was days before a neurosurgeon consulted with us on his treatment.  Having been on the internet, my daughter and I (both teachers) were not surprised when he suggested traction, followed by the wearing of a stiff collar.  And this might have been the proper treatment if a different collar had been used: one without a stiff plastic piece down the chest.  Because Paul has a short neck and receding chin, the chest piece forced the collar up and over his mouth, obligating nurses and aides to readjust it constantly.  It wasn’t long before my daughter, and I noticed that his neck was tilting perilously to the right.  But the neurosurgeon and Paul’s GP had gone on vacation, and nobody else could be persuaded to notice.

Equally alarming was Paul’s precipitous mental deterioration.  Upon entering the hospital, he’d been asked and confirmed that he had a living will.  The question had seemed a formality; but faced with this inexplicable deterioration, it didn’t.  Naturally, my daughter and I kept requesting explanations from various doctors and nurses, but they all insisted that such “hospital confusion” was common.  What they failed to mention was that he was being overdosed with morphine.  I wasn’t prepared for the call I got one morning from someone wanting to confirm that Paul was not to be intubated. Flabbergasted, I said, “He’s dying?” “Well, he’s struggling to breathe,” came the reply. “So, you’re telling me he can’t recover?” “No, but he’d have to be intubated.”  I insisted he be intubated, and this crisis was abated.

Yet Paul remained on the morphine, unbeknownst to us.  So there was no satisfactory explanation for the unresponsive invalid with the twisted neck who barely spoke, kept his eyes closed, rejected food, and had clearly given up.   We saw a dying husband and father.  The hospital saw an old man who’d been treated and was outstaying his insurance.  Consequently, Paul was moved to the transitional care floor, preparatory to being discharged in eight days.  Because most patients on the floor are self-sufficient, Paul’s needs far exceeded those provided.  Indeed, only when I explained to the overseeing doctor about the constant readjusting of the collar, did he bother to look at Paul’s CT scans.  His response? “I’m not touching that collar. He’s a millimeter away from being quadriplegic!”  Instead, he summoned an orthopedic surgeon for a consult — without consulting me.

So, when a surly man in a winter coat steamed into Paul’s room the next day, there’d been no preliminaries, no introductions.  Nonetheless, he launched into a tirade about not appreciating having to come in after Christmas when he had children at home, especially to second-guess his colleagues.  (“They have big egos, you know.” No, really?)  Besides, he didn’t deal with Medicare patients, as it didn’t pay him his worth.  Somehow I managed to tamp my sarcasm enough to suggest that he, at least, look at the collar while he was there. Yes, he confirmed, the collar was all wrong, and reluctantly agreed to explain that to the covering neurosurgeon.  But he offhandedly commented that the harm was done, and surgery was undoubtedly required.

Several hours after the arrogant orthopedist left, an even more arrogant neurosurgeon showed up.  My daughter had arrived as well.  Not willing to give up on her father, she had been getting advice about other medical resources, and had brought a pad with copious notes.  The neurosurgeon did swap out the collar, but refused to see the obvious: That the neck was back to a lethal state. Instead, he saw my daughter’s notes and began laughing and shaking his head as if she and they were simply ridiculous. And when I mentioned the possibility of surgery, he replied with a smirk, “No surgery, just call our office in four to six weeks.” With that, he was gone, never to return.

A few days later the first neurosurgeon returned.  Unlike his partner, he couldn’t ignore the contortion of the neck, or the fact that his patient was hideously altered from the intelligent, articulate, witty man who had chatted with him knowledgeably about Italy and had made jokes about being in traction.  Undoubtedly feeling slipshod, he called for a CT scan — but not of Paul’s neck, of his head! Apparently, he was looking for a contusion to explain Paul’s mental deterioration; he’d already deluded himself that the destabilization of the neck was entirely the fault of those who had fooled with and replaced the collar he’d put on.  That is until my daughter whipped out graphic pictures of the mess made by the original collar.  Brought up short, he called me at home.

Now he insisted that Paul needed a “halo.”  Yet, back in mid-December, he’d dismissed the halo as Paul’s “ticket out of here,” because of the risk of lethal infections it poses to aged skin.  His solution?  That Paul come home so I could properly care for his skin and prevent infection.  I, who am squeamish about a pimple.  And, should Paul get (and God-forbid succumb to) an infection, who would carry the blame for the rest of her life?  But, according to the doctor, it was this or a lifetime invalided with a shattered neck.  Luckily, his idea was so harebrained, it was easy to reject.  Instead, I had Paul moved to a sub-acute care facility/nursing home.  There, he dumbfounded us by coming back to life.

It was my daughter, however, who made sure that that life was worth living.  For weeks, she had been angling for an appointment with one of the university hospital’s spine specialists.  Perhaps because Paul had been a professor and department chair there, the woman at the referral service was particularly conscientious, alerting her on Monday, January 5th that there was an orthopedic surgeon appointment open the next day at 11 a.m.  When I was told of it, I admit to a certain ambivalence, fearful of facing even more bad news from another insensitive surgeon.

I needn’t have worried.  The surgeon we saw was cut from a far different mold.  He listened — compassionately — as if he had all the time in the world.  When he spoke, it was to Paul, asking questions, not about his symptoms, but about his university tenure.  And when he finally gave his appraisal, he didn’t mince words.  He said that he believed the neck to be dangerously unstable (“a ticking time bomb”), that the risks of not doing radical surgery far outweighed the risks of doing it, and that time was of the essence.  Therefore, he suggested we go directly for the necessary tests; that he would make all the arrangements.   He also called the sub-acute care facility to stipulate that under no circumstances whatsoever was Paul’s collar to be adjusted by any member of its staff.  Finally!

Although he was to be out of town from Thursday to Sunday, he assured us his assistant would review the results with him, and that he would be back in touch on Monday.  In that follow-up call, he confirmed that surgery was called for within the next few days.  Although it was Paul’s decision to make, I knew there was no option.  We gave the go-ahead, and like clockwork, everything fell into place.

The next morning, January 13th, an ambulance picked Paul up for transport to the city.  Upon arrival, he was whisked to the neurological ICU and put back into traction.  The following day, at 6 p.m., he was finally wheeled into the OR, and my daughter and I began the agony of waiting.  Initially, we were directed to a waiting room.  But after it closed at 9 p.m., we were told to wait in the lobby; that the surgeons would call us on our cellphones when the operation was over.  Instead, at about 10:30 p.m., the surgical team came striding in to assure us in person that Paul had come through with no complications, despite requiring seventeen screws in his neck.

From that point forward, Paul’s recovery was amazing.  The day after the surgery, the nurse asked if he had any pain.  He said no, and was therefore given no pain medication, allowing him to remain fully alert and communicative.  But as he’d lost thirty pounds and been flat on his back for a month, it took two people just to lift him out of bed.  So we were astonished when he was accepted into a premiere rehabilitation institute just four days after surgery, and incredulous when told that he would come home “safely” in two weeks.  Within days, he was dressing himself, climbing staircases, and stepping into tubs.

His final challenge was to walk along and across the avenue in front of the facility, accompanied by his physical and occupational therapists.  He navigated the outside just fine, but returning through the automatically-revolving doors, his now greatly-baggy pants fell down.  The therapists managed to stop the doors and retrieve them.  Once safely inside, all three dissolved into belly laughter: surely the sound of a full recovery.  Two days later, Paul returned home, having been away for seven weeks.

I have often thought about what our lives would be if the community hospital had been our only recourse.  Presumably, Paul would have returned home from the sub-acute care facility in the same time frame.   But the physical therapy he received there would have been minimal.  So it is likely that our dining room would have had to be converted into a hospital room, and I, into a full-time caregiver.  Nonetheless, Paul’s health care costs would have skyrocketed — at least until a fall or major head-bobble ended his life.  Instead, our lives have returned to what they were prior to the fall, with Paul fully self-sufficient and still needing only one regular prescription medication: a simple diuretic, taken daily.

Elizabeth Kemp Baker is a retired teacher.  Sujana S. Chandrasekhar is an otolaryngologist.

Image credit: Shutterstock.com

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