Friday 13 July 2018

Field Notes from a Medicare Disaster: Twelve

Our family doctor had bad news and good. The bad: her friend, a neurologist at Michael Garron Hospital, formerly known as Toronto East General, was going on maternity leave so she would not be able to take over my guy's care. The good was only good-ish: another neurologist at Michael Garron had agreed to see him in her stead--not to take over his care, mind you, just to see him. A letter arrived from that doctor's office shortly thereafter with instructions about bringing his OHIP card and checking in at the hospital's admitting department, etc. The appointment, at 10:30 am., had been set for the third week in March.

It was the middle of February. My guy couldn't get out of his hospital bed without a Hoyer lift, couldn't roll over without waves of dizziness. His muscles were wasting away from lack of use. How were we going to get him to a medical appointment in March? 

Early one morning I got a phone all from St. Michael's hospital: finally, a bowel movement.  I was told the entire floor had erupted in cheers. And there was other news. There was at last a bed available for him in a rehab center.

Which one, I asked crossing my fingers behind my back and whispering to myself please, please not Providence.

So much for whispered prayers and finger crossing: Providence was the only place possible for him, I was told, due to the fact that he suffers from Parkinsonian syndrome and is therefore considered to be a slow rehab patient. Most of the other places have a more rapid turnover rate. Providence, on the other hand, could keep him for at least four weeks. St. Mike's would ship him there by medical transport the next morning.

I went to bed that night fulminating, though there was no one to hear me, about how much time it was going to take just to get there. Getting there would be a daily event because, as experience had shown, leaving him to the tender mercies of hospital staff was not advisable. Yet I also had work to do, a new book on the market that needed my support, a business to oversee, a house to run, an aged mother to attend to, grandchildren I hoped to play with, friends I like to speak with every now and again. Where was I going to find that extra time? Getting up earlier and going to bed later works for a while, but not for months on end, and I had already been dealing with the long trailing edge of his flu for six weeks.

I was also struck by the hospital's name. I couldn't get it out of my head. Providence as an idea is often contrasted with fate--a concept shared by many cultures but most memorably advanced by the playwrights and poets of the Golden Age of Greece. Fate is a future inexorable and unavoidable which sticks to a person from first breath to the long goodbye: fate means that everything about our lives is written in the stars, foreordained, no rewrite possible. Providence is the opposite notion. Providence refers to God's intervention in the world and, specifically, in the lives of individuals. God knows when every sparrow falls and is familiar with every hair on our heads, or so we are told. The Christian God is supposed to be benevolent, so in this context Providence is the deliverer of miracles. Yet the Christian God has also been known to punish, so some interventions from that Hand can be terrible. Providence is the name for change imposed on us from high above according to the designs of the Creator. It has little to do with the exercise of individual will and its nature is double-edged. Things going well? Bend your knee to Providence. Things not going well? You've only yourself to blame for the hardships dealt by the Hand, or, if you are not at fault, the bad times fit some larger design and yours not to reason why. In other words, like most religious concepts, providence as an idea is inherently contradictory and as multi-layered by millennia of theological arguments and schisms as a fine French pastry. For Catholics, it implies a sweet flowing river of balm aimed straight at the hearts of those who suffer. But that river has a punitive undertow, a hint that if one finds oneself at the mercy of Providence one may have gotten exactly what one deserves. So Providence is both miracle and torment --a la Dante.

Religious dogma does not matter at all to my guy, an atheist unencumbered by religious dread. He was just grateful to get out of St. Mike's alive. But I have always danced a two step between the mysterious and the factual, so the name gnawed at me.

I drove to Providence the next morning. It took me 45 minutes and that was outside of rush hour. It took me another 10 minutes to figure out where to park due to the fact that its system is as tricky as the Montreal Cognitive Assessment test. Providence is not just one hospital building, it is an interconnected village of low rise structures on top of a hill. First a card spits from a kiosk as you enter the main parking area, but to leave Providence you must pay inside at another kiosk which spits out another card for insertion on the way out. No new card to insert, no escape from Providence. And: parking near the Hospital entrance for longer than 20 minutes is forbidden. Neither should one park near the outpatients' clinic around the corner from the rehab hospital's main entrance or the Hand might take a swing at you due to your selfish and inconsiderate behavior. But it's a long walk to the hospital if one parks near the long term care facility attached to its backside. (If a rehab patient can never go home again, that person can be moved by gurney directly to a bed in that facility. If there is a bed available. Don't hold your breath.)

A small forest lines the sides of a valley below the housing development across the street. There is a pond in a hollow below the main parking area. The subway is elevated at this portion of the line so every few minutes a silent train swoops across this semi-urban, semi-park like landscape from the south heading east. There is not much in the way of shade or shelter for those who must trudge from the subway station the several hundred meters to the hospital entrance. Though there are ramps for the halt and lame, it would be a trial for anyone without a car to climb the hill from the subway station or the main bus stop. Maybe it's meant to be that way.

And yet, when I finally found a place to park my car and walked up to the front door, I liked this spot. There was a nice wind in my face, a peaceful sounding wind, and minimal traffic noise, a good change from the urban bustle of the downtown core. I walked through the main door, past the ubiquitous Tim Horton's on the right. (Why does every hospital I've been to in Toronto have a Tim Horton's concession?) In the admitting office to the left, a man on a gurney offered papers to a staff member trying to find out which room he'd been assigned to. Front and center there was an information desk beside a curved stained glass wall with oversized images of Catholic redemption.

I was instructed to take the elevator to the second floor where I would find the neuro ward and my guy. Its doors opened on a wide hall with more paneling, more religious iconography, this time a white sculpture which I refused to look at closely so I can't say whether it is a statue of Jesus or his mother: plaster of Paris sculptural drapery all looks gender neutral. There were leather chairs and couches to sit on beneath wide windows. There were rooms with plaques on their door frames signifying a corporate gift. One room had a wall of bad books, some games, and some computer stations. There were several large meeting rooms and a very large chapel. I found myself checking how the light fell from the windows, wondering if the views were innocuous enough to suit that film crew. If my guy was still in this place in six weeks, the film crew would have to shoot him here, in Providence. And the truth is, I didn't see how he could get home in such a short period of time. He couldn't turn over in bed without help. He couldn't sit up without help. Our house is full of stairs, there is no bathroom on the main floor, and the bathroom on the second had a tub. How in hell was he going to manage all of that when he needed a mechanical stork to carry him from bed to chair? To get him home, I knew that at minimum I would have to put in a stairlift and renovate the second floor bathroom. I had checked out costs for stairlifts the previous summer in a fit of precognition. They are not cheap. I had been told it could be done in a few weeks if a special order, days if a straight lift. Our stairs turn, so it would be a special order. But the bathroom was the real problem. If they were going to throw him out of here in four weeks, that's how long I had to fix it.

No one in Toronto does a bathroom reno in four weeks. The contractors always say it's doable, but then reality intervenes, which is a lot like the hard Hand of Providence.

I followed the directions down a hall to a T junction where there was another information desk. I walked by patient rooms and carts filled with soiled laundry. I tried to ignore the smell of urine and feces. Incontinence or inability to get to a bathroom without help is a problem for anyone who has had a stroke and a stroke is what had happened to most of the people in the rooms I passed. Most were older, but a few seemed way too young to be here. One young woman scooted past me on a wheelchair going at a remarkable clip considering it was powered only by her arms. I thought she was a denizen: turned out she was the speech language pathologist. Some of the patients sat in wheelchairs in the doorway to their rooms, waiting for something to happen, or just waiting. I tried to remember my Dad's rule about walking into a hospital room: always smile, he used to say. Always have a joke. I smiled, I waved at everyone as I went by. All the nurses I passed smiled back and said hello.

None of them were sitting at computer stations in the hallway. They were all on their feet, working with patients. Hah! I thought. How strange.

I found my guy's room on the left side of the T junction, past the doctors' station with its rows of computers, and past a placqued "family" kitchen with a fridge, coffee maker, microwave and sink, past a gym with another row of computers. His name was spelled out on a name plate right at the entry to his room, along with his roommate's.

Whoa, I said to myself. Treating a patient like an important person with a name? How unusual.

His room was large and bright. To the right, by the door, was a very large washroom with a roll-in sink and a toilet with a large, sturdy commode. Straight ahead was an entire wall of windows with a great treetop view of woods, parking lots, the subway rolling silently by, and a big sky.

He was in a bed. His trip from St. Mike's, he said, had been harrowing, mainly because it took so long and he couldn't see where he was going. He was dog-tired, he was dizzy. Yes, someone had bathed him in the bed.

His roommate was a much younger man, a garrulous fellow who wore plaid flannel pants and loose t-shirts whether going to bed or going downstairs for a coffee. His wife was sitting in a chair on his side of the room talking on her phone, doing the job he was too ill to do. One of his daughters and a grandchild ran in and out with treats. Call this man John. Or Job. He said he had five children, and worked as a superintendent in an apartment complex. He had had a stroke for which he blamed himself. He should have changed his habits, he was warned after he had that heart attack. He knew he could have another of each, stroke or heart attack, at any time. He was weak on the left side, but he was at least able to get himself out of bed and into a wheelchair and his speech had not been affected.

He and his wife were quick to tell me how to pay less for parking. His daughter brought in treats for my guy. They had a searing story of a medical nightmare to tell, centered on the birth of the grandchild playing on his bed, a boy of about five. He had been declared hopeless at birth by a doctor who told them he should be institutionalized, but they had taken him home and loved him and cared for him and look at him now! He was not quite normal, he had trouble meeting my eye at first, and he had trouble enunciating clearly, but other than that, he was like any other five year old boy. He was adorable. He would be fine. They had made it so. So they were wary of medical error, wary of institutional stupidity and cruelty. They told me they would keep an eye out for my guy when I was not there.

They told me that would be necessary.

My guy had been shipped to Providence at the end of the week. I had hoped for physio on the weekend, thinking, it's a rehab place, they'll carry on with it over the weekend in a rehab place, won't they? But no: only stroke victims were taken to the gym every day. So another weekend passed without physio, leading to more difficulty turning in bed, more difficulty sitting up. However, this room had an overhead Hoyer system making it easier to get him in and out of bed. A nurse with one helper could do it, and there was no need to wait for someone to haul in a portable machine.

Well at least that's an improvement, I thought. He'll sit up more. And there's a great view, good light, he'll cheer up.

There were other marks that this place was well run. The pharmacist came in to get a list of his vitamins and probiotics and to ask detailed questions about how and when his Sinamet was to be given almost as soon as I walked in.

Though the food was wretched, no mistakes were made: no dairy was brought to him on his meal tray. His diet was almost 100% vegetarian but without any salt.

Please bring salt from home, he said after his first lunch, a vegetarian patty of some sort.

I asked a nurse about salt.

It's the blood pressure issue, I was told. It's still high.

The second morning, Saturday, when I came in with his clean laundry and the newspapers, his roommate was very upset. He told me that they had had to wait for help from a nurse the previous evening for more than forty minutes. Who needed help? I asked. Your guy, he said. And, said John, this was not the first time this problem had arisen, it was constant. There were almost no nurses available between four and 11 at night. The whole floor was managed at that time by only one nurse with a PSW or two to lend a hand. "So I told her, when she finally showed up," said John, "hey, forty minutes, if I was having a heart attack, I would be dead by now."

And you know what, added his wife. The other night I came in and one of the nurses was yelling at a patient like nothing you ever heard and I had to chase her down and tell her to cut it out.

My guy was quiet as they told these stories, as if he didn't want to make a fuss. Was he afraid of being treated poorly if he complained? I think he was, which is unlike him. And a fuss needed to be raised. You can't make people in need of the toilet or having a heart attack wait for forty minutes. It's not safe and it's not fair. I went in search of someone to complain to. But it was the weekend, so there was no one sitting at the information desk. The care coordinator was not available either, not until Monday. The gym was empty too except for two people working with weights at the far end. The nurse in charge of my guy's care appeared a few minutes later at the far end of the hall where she was the checking prescription orders for her patients. I walked up to her, a tiny woman full of spirit, and introduced myself. I explained what I'd been told.. She agreed there was not enough staff at that time of day, the nursing staff had complained over and over about it, but nothing got done.

Well maybe I should raise a fuss, I said. Would that help?

She thought it might.

I  went home that afternoon with a bag of laundry to do and a fraying temper. Out of the frying pan, into the fire, I told my daughters.

And yet something, some undercurrent, something indefinable about the place said: hold back on that judgement, keep an open mind.

And sure enough, on Monday, everything changed. A rewrite began.

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