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  • Scott Carter Cooper

Entering the Hospice Industrial Complex

“The time has come to discuss hospice.”

That phone call catapulted me into the middle of a raging turf war.

No matter how bucolic a small town in Iowa may seem, anger, jealousy and raw hatred is always seething just below the surface. Many times it’s a generational accumulation of resentments with origins going as far back as the mid-nineteenth century when settlers collapsed next to creek and decided the lure of gold in California wasn't as necessary as once believed. And so, rivalries began. Lutherans vs. Catholics. East of the highway vs. west of the highway. Nurses vs. doctors. Sins and infractions get buried and details forgotten, but the distilled knowledge that this group is superior to that one is nurtured and passed along. Generations are inducted into social armies at the enrollment into kindergarten, and those armies evolve into dynasties without anyone ever really noticing.

My family is from good, small-town stock having lived in a number of small towns sprinkled across the upper northwest corner of Iowa since at least 1909 when my grandmother arrived from Austria. For the past twenty-some years, my mother has lived in one of these small towns, with the most recent four years as a resident of a bed in a nursing home. With her virtually bedridden and riding the final waves of dementia, last week we got a call about a rushed trip to the hospital with unexplained abdominal pains. Within hours a call from a hospice caseworker came in. We were asked to give permission for the caseworker to review my mother’s chart, which was of course given, and we were told that the need for hospice care was indicated. Through texts, over Saturday and Sunday, so you know how urgent the situation must be, a conference call was scheduled for first thing Monday morning to discuss my mother’s decline.

A word like hospice is a brutal gong that surfaces emotions and renders all following information unintelligible. The Monday morning conversation was a blur, but what was clear was that Mom’s condition was unresolved, and that the doctor would need to authorize the hospice care. Would we give permission for the caseworker to contact the doctor for the authorization?


And then we waited.

On Wednesday I received a text from the caseworker asking if I’d heard from the doctor, because she had not. In hindsight a flashing red flag, but I was more concerned about navigating the stormy waters of my mother’s final days and less concerned about someone else’s administrative challenges. But I also had not heard from the doctor and offered to call to see what was happening.

The doctor was on vacation. Certainly a simple country doctor is entitled to his vacation, but what of patients who had the audacity to get sick in his absence? Apparently, no one in a small town would ever be so bold.

A nurse I spoke to, who was merely reading from a chart as she was not involved in the case, said that Mom was being released and sent back to the nursing home. A course of antibiotics had been administered, and what they feared might be pneumonia was under control. It was news to me that my mother's lungs had migrated to her abdomen, but I let that slide as I told the nurse that we were waiting for a hospice authorization, and she said she’d relay the message. Quite emphatically, and as only a pissed off gay man can, I told the nurse that I expected a call from the doctor as soon as possible.

And then we waited.

I received another text from the caseworker. She hadn’t heard anything and was growing concerned.

Speaking to my mother is difficult. The nursing home does not provide a phone in the rooms and getting her to a land line is labor intensive. Mom has a cell phone, but using it confuses her, so I had not spoken directly to her. For all I knew, she had been sent back to the facility to die.

The next day, another nurse returned my call. She had spoken to the doctor who treated my mother. At no time had he suggested hospice care was necessary, he had no idea who called me. The nurse said there was no indication that a hospice caseworker had left any messages.

In a text, I relayed this to the caseworker.

The caseworker called.

The long and short of it was, the nursing home has one hospice provider and my mother’s doctor is on the board of another hospice provider. He will not make referrals to the nursing home’s service, preferring his own. This was not a surprise to me. This final internment in a nursing home is her third. In the first two instances, no options were provided and she was sent to a home with an inferior rating. Upon her release the second time, my mother told me that should she need another stay at a nursing facility, she preferred another one. So, in this third round, I was alerted to her transfer before it happened and notified the hospital of her preference. Her preference was not her doctor's.

We had words.

I won. With regard to the hospice providers, the rivalry is so bad, that legal action has been taken. I don't have any further details, nor do I ever want to have them.

As I’ve gotten older, I’ve become increasingly aware of the financial aspects of the healthcare industry. Seeing a bill of $400 for a twenty-minute visit to a dermatologist broken down for the insurance submission is a shock. Seeing the same sort of statement for a pair of glasses that wholesale for about $30, but retail for $1,500 is the apex of absurdity. In each and every case, to salve the sting, the patient is told, “But your out of pocket is only…” I owe the dermatologist $92, and the new glasses only cost me $400.

It is truly a world gone mad.

But I am still of the philosophy that the accent on the term “healthcare industry” should fall squarely on the care, and not the industry. Particularly when discussing end-of-life issues, and most emphatically when discussing those issues concern my mother. Woe unto the poor caseworker who runs afoul of my philosophy.

I explained – as civilly as I am capable under such duress - that I did not care whose revenue stream my mother’s care enhanced, I was only concerned that she receives the finest care the cornfields of northwest Iowa can provide.

This is when I was informed of the legal case the nursing home has pending against the doctor.

I now realize that no matter how far I may roam, no matter how long I’m gone, I will never be free of these small-town squabbles.

So, I allowed a little extra chill to enter my voice (homosexuality has its perks) as I then explained to the caseworker, that regardless of who provides the care, I was not in the least bit interested in the rural legal squabbles and that once I’d heard from a doctor, we would be making some decisions. Unsaid was that I've done five separate productions of Hamlet and I've written a play. I've risen above my small-town heritage. I'm in the THEATRE.

In my experience, doctors are very impressed with their achievements as doctors and the places of importance they hold in people’s lives. But I’ve spent the past four decades in Chicago theatre, and I can say with absolute conviction that the grandest of medical god complexes has nothing on a Chicago storefront actor with a Jeff recommendation on his resume. I am well prepared for any conversation with the most self-important doctor. And a nursing home director of nursing is not prepared for me.

I called the nursing home.

I told the person who answered the phone that I would wait on hold until a person who authorized the hospice caseworker to contact me was available to speak to me.

It wasn’t a long wait.

I’m that good.

What had happened: Because of a drop in oxygen levels in the blood, and given some other details, a trip to the hospital was necessary. Of course, this was the first time I’m hearing about oxygen. And so, an industrious caseworker, who may or may not be working on commission, thought she would preempt a doctor’s order and get the family to request her hospice service in preference to the doctor’s, completely oblivious, or indifferent, to the possibility the panic and grief this innocent phone call would ignite.

The righteous fury of Heaven itself burning in my heart, I left specific instruction to be entered into my mother’s chart – instructions that I required be read back to me, and grammatical errors corrected. The instructions read that only a nurse who has actually touched my mother is ever allowed to call me from the nursing home again, and that should I EVER receive an upsell call, the wrath of Zeus himself should fall upon the head of this salesclerk, who I would personally see dispatched to the late-night shift of the local McDonald’s for all eternity.

The nurse agreed.

A theatre degree has not been wasted on me.

I’ve since spoken with my mother, and while her condition is in decline, she’s comfortable and happily munching on Hershey bars between naps.

I’ll be seeing her next week.

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