Friday, 6 July 2018

Field Notes from a Medicare Disaster: Eleven

I had become used to running in and out of St. Mike's: I knew where to park without leaving my right arm behind as the parking fee. So I found him quickly in the Emergency. He was in an isolation cubicle, one of a series of new Emergency treatment rooms for patients who might be contagious. I had to put on a mask, a paper gown, and gloves to visit him. I did not do it properly. I let the edge of my sweat shirt escape from the elasticized sleeve of the gown. I put the mask on upside down. My Dad would have been ashamed. The nurse on duty made me do all of it over again properly, and then showed me where, as I left the room, the gloves, gown, and mask were to be peeled off and thrown away, and in what order.  Since the SARS epidemic, Toronto hospitals have gotten much better at infection control.

There was a high clelestory window above his head. The view was a brick wall, but it was an improvement over the standard Emergency cubicle because he was at least bathed in natural light. The sliding plexiglass door/wall dividing it from the corridor had a clever blind system to grant privacy and darkness at the flip of a switch.

He was asleep. The nurse said they were waiting for the test results but they were pretty sure he had the flu, the bad one that had been circulating since November. Weirdly, he'd shown no symptoms of flu at all when he went to bed the night before. And yes, of course he'd had the flu shot, but the vaccine for 2017/2018 was less than 50% effective and people who have underlying chronic conditions are much more likely to get flu, and get much sicker from it, than those who do not. Which is why he got the vaccine, though it turned out to be useless.

I was tired that morning: if I'd known how tired I would become over the next few months, I would have turned around, gone home, and crawled into bed again, not sat there in a hard chair borrowed from the corridor watching him sleep, as if that helped him or anyone else. The fact is that I felt guilty: instead of following the ambulance down in the car, I had gone back to bed. I had had a reasonable night's sleep at home while he lay in this noisy place on a gurney waiting for someone to figure out what ailed him. By then I had had enough of hospital visits in the dead of night, I had simply rebelled against the constant requirements of disease. Maybe it was because I was in a Catholic hospital that the Catholic practice of penance now took over. Sitting in this chair was a Jewish woman's version of saying a rosary for the sin of putting self--like America--first. I kept myself busy by reading the paper, while glancing frequently at the monitors to see what was going on, as if these graphs and beeps conveyed the truth about him. His oxygen saturation was okay. His heart rate was okay. I asked about his blood pressure. The nurse took it, and to my surprise, it was still high. I had assumed it would come down to normal as soon as they got his fever under control. He still had a fever, but it was not that high anymore. Yet his blood pressure was up, up, up.

When I spoke to the physician in charge later in the day, I explained that my guy's blood pressure was almost always low normal and these numbers were very high for him. I also explained that he had a diagnosis of Parkinsonian syndrome, made right here in this hospital, and that he needed to rigorously adhere to the schedule he was on for Sinemet and he was not to have dairy due to the way it interacts with that drug. Yes, the doctor said, he was aware of all that. But he had questions: the file said he had COPD. No, I said. He does not have COPD. He has asthma. The file says he smokes, the doctor said. No, I said, he quit two years ago. The file also says he has high blood sugar and high cholesterol. No, I said, his blood sugar and cholesterol were edging toward high normal a few years back, but he's managed both well ever since. ( I should have asked: why do ancient errors linger like ghosts in your file? What would you have done if I had not been available to correct it?) The doctor said he might give him something to pull down his blood pressure and said he would order the Sinemet to be given at least a half hour before each meal, not that his meals came with any regularity in Emergency, not that they were meals at all, mainly a sandwich and something to drink. I went home that afternoon reassured that they now had a proper history, the correct list of the vitamins and probiotics he took in addition to the Sinemet, and they knew he shouldn't have dairy.

On the third day of his stay in the Emergency cubicle, I spotted a spray of grainy brownness on his pillow. A nurse said he'd thrown up. I'd never seen vomit that looked quite like that before (and wondered why that pillow was still on his bed, but hey, the nurses in the Emergency are run off their feet). By then, he'd tested positive for the flu but had apparently also acquired pneumonia. They had him on tamiflu, but would add an antibiotic. I brought him his probiotics from home from then on, along with some of the things he usually ate them with -- non dairy yogurt, blueberries, bran buds. He complained that he was dizzy. He couldn't sit up on his own, had a hard time just turning over in the bed. Yet he was getting grumpy about the food, or lack of it, which I took as a sign of improvement. I was desperate for any such sign. I went to The Second Cup in the main lobby to see what non dairy treats I could rustle up. I kept reminding the nurses: please give him his Sinemet at the right time and please don't send him any food with dairy in it. I had to remind them about that because I kept finding buttered egg salad sandwiches on his meal tray. They blamed it on the kitchen; they assured me they had told the kitchen he was not to have dairy.

At that point I was still convinced he needed Sinemet and anything that interfered with it was bad. I thought it was helping, that without it, he'd be lost.

On the fourth day or fifth day, I can't remember which, I arrived to find that he'd been moved at last to a medical floor upstairs. I found him there, all alone in a huge double room at the end of the hall nearest the elevators, very close to a nursing station, though not the nursing station in charge of his care. Signs on his closed door warned of respiratory infection and the need to gown, glove, and mask before entry, and that the patient was at risk of falling. There were receptacles just outside the door for used paper gowns, masks, and gloves. Each nurse who took care of him on their 12 hour shifts could be found sitting just outside his room at a computer station -- when that nurse could be found at all. Often, when I came in to see him, there was no nurse at that station or at any of the others down the hall. Was it the time of day? Were they helping other patients? Were they on break together in a staff lounge? Sometimes a student nurse would be sitting at that computer station, a young person who was full of enthusiasm for the nursing profession yet quick to say that he/she couldn't tell me how he was doing. The empty computer stations reminded me of the empty ticket wickets in old fashioned movie theaters: if you arrived after the movie started nobody was around to let you in.

There was one visitor's chair in his room, one bed, though the place was designed for at least two. There was a computer hanging by a movable arm which also doubled as a TV and a phone system. Its use required payment of a hefty fee, one of many ways in which money is plucked from richer patients' pockets in our so-called everyone-is-equal system. The poor must recover in silence. I set it up for him but he didn't want the TV on, didn't want to speak with anyone on the phone because he was not in good shape. His dizziness was worse. He didn't like getting up, resisted it, yet he needed to in order to clear his lungs. They had to use a hydraulic lift, called a Hoyer, to get him out of bed. It's a sling system attached to a slim machine reminiscent of a small forklift. It is a gift to nurses who, in the past, often suffered injuries when lifting patients larger than themselves. When they used the Hoyer to transfer him, he looked like a giant baby carried by a mechanical stork. Not that they used it very often. It requires two people, a nurse and a junior trained in the art, and there were never enough of either on hand. So he was bathed in the bed. He was not shaved at all. He was not sitting up with his feet dangling over the side of the bed either, far too dizzy for that. His room seemed to be always dark, probably because the skies were heavy with winter snow, or maybe because my mood colored reality.

Day after day went by in the following way: I would work in the morning, bring probiotics, yogurt,bran buds, blueberries and newspapers to his room around 11:30, gown, mask, glove before going in. I would try to get him to eat. But he didn't want to. Even lifting his bed back so he could lie in a more upright position was enough to set the room spinning for him, as was being asked to roll over to be washed. He had a mild case of hiccups that wouldn't stop. And why did no one have an explanation for this constant dizziness? Was it the pneumonia? A remnant of the flu?

A clever young doctor came in one afternoon while I was there and introduced himself as the resident. Lovely pale hair, cut very short yet feathery, a clever fellow with a certain sharpness, a good memory, very likeable, very quick, very to the point. He was focused on getting my guy better from the flu and the pneumonia: he was not really interested in Parkinsonian syndrome issues other than how they might slow his recovery, but said he'd ordered dairy free meals for him and the timely dispensation of the Sinemet. However, he wanted a speech language pathologist to see him too. Why? I asked. Well the granular vomit on the pillow down in the Emergency meant that he had aspirated food, which likely caused the pneumonia, and it is known that Parkinson's sufferers have trouble swallowing.

Hasn't had trouble swallowing in the past, I said. We both said it in unison. In fact, he had always been able to swallow large pills without water. He often took his Sinamet without water. And what's with this dizziness? And when are we going to have a physiotherapist in here to get him up and moving?

The physiotherapist soon appeared. She explained that she had to have an assistant with her to work with him, that this was due to the need for the Hoyer lift to get him upright and on his feet. She'd come back later with a helper.

Late in the afternoon, the speech language pathologist came in to see him with a student in tow, nice young women obviously committed and able. I watched their examination technique with interest. It involved observing his mouth carefully as he made certain sounds, as he stuck out his tongue. It involved feeling his neck as he swallowed certain foods they'd brought with them to test on him. At the end, the speech language pathologist told me she wanted to order a pureed diet for him. My mother has been on a pureed diet since her last bout of pneumonia, apparently also caused by aspiration of food, but my mother is 25 years his senior. That diet takes a lot of joy out of her life but her life has been long and joyful. His, on the other hand, is shorter and at that point, there was not a lot of joy to be found other than decent food. So I wanted to say no. Yet I had to acknowledge that his hiccups would not stop, that his lower lip trembled when he stuck out his tongue. I'd never noticed that before. A Parkinson's symptom, she said. (And when I looked it up online, I found this to be correct.) And what about his voice? she asked. Usually okay, though sometimes soft, I said.

She was convinced he was also having difficulty swallowing and the hiccups were part of that problem. So I said fine, we'll do as you say. The pureed diet began the next day. It was basically warm goop. No fiber to speak of.  Also, his meals were salt free because his blood pressure remained stubbornly high. Breakfast, lunch, and supper became a war between hunger and disdain for what was offered.

I came in one day to find him in another room, a double shared with another fellow who lived only a few blocks away. He pointed out the roof of his house which he could see from the window. My guy was officially no longer contagious, no more gown, gloves, mask. By then, many days had passed and still, no one had shaved him. I decided to try it myself because getting someone else to shave him apparently entailed finding a man with a royal name who also helped with the Hoyer lift. Hours went by while that man was  unsuccessfully sought. Apparently there was a feud between him and my guy's nurse: this man busied himself elsewhere whenever she hunted for him. I shaved him in the bed.

The roommate was a kind fellow learning to walk with a walker, but he was able to make it from his bed to a table for his meals and take little jaunts down the hall, though he hated using the walker to do it. He told me he lived alone. I couldn't imagine how he was going to manage when he got home. Who would shop for him? Do his laundry? I made it a habit to bring him Tim Horton's coffee from the cafeteria because the coffee that came with meals was execrable, and if he had visitors who might bring him some I didn't see them. and it would have been very hard for him to make it to that cafeteria on his own.

My guy had the bed farthest from the window. The curtain between them cut out all the natural light and the view of the the condo towers marching ever eastward across the city like stiltwalkers, towering over the historic neighborhoods. He and his roommate got on well together, looked out for each other. When he was discharged, he left my guy some razor blades and shaving creme.

Within days of the introduction of the fiber-free, salt-free, dairy-free (except for the trays that appeared with milk and butter on them), texture-free and taste-free diet, my guy's bowel stopped moving. Day after day, night after night, they laced him with every laxative known to medicine, to no avail. It didn't matter how many times I said, if you just get him off that food and get him up and moving, get him up on his feet, this problem will take care of itself. There was always a reason why not, usually because, if the physiotherapist was available along with a helper to work the Hoyer, my guy was too dizzy to cooperate. His main movement of the day involved being lifted in a sling from the bed into a large chair beside it, a chair with headrests and leg rests that could be adjusted. His life was collapsing into half a small room. He didn't even want to be wheeled in that chair down the hall to look out of a window with a different view. He found it hard to read, hard to focus. Everything was hard.

When they finally got him up on his feet for the first time, it was a Friday. He managed to take two steps holding onto a special walker with chest- high arm rests, with two people standing by in case he faltered. I had never seen him so helpless, so unable to fight. Yet I was enthusiastic about this breakthrough, thinking this progress would be followed up the next day. No physio on the weekends, I was told. But he'll relapse, I said, he needs to keep moving. Sorry, they said. Budgetary constraints.

But they weren't sorry, not really. He was a hard case to manage. He didn't belong in acute care anymore because he was no longer suffering from the flu or pneumonia--he was cured! Yet he was in serious trouble: the more he lay in bed without using his muscles, the more his strength drained away, the more his bowel forgot how to work.

When he was at his most lethargic, almost a month after he fell ill, a letter arrived in the mail congratulating him and his colleagues on being nominated for an extremely prestigious award: the letter asked, would he allow a film crew to come and shoot a film about the three of them? If so, they would all be invited to attend a major ceremony in Europe in about five months. The film crew would arrive in six weeks. I burst into tears though I rarely cry: I couldn't figure out why. This letter should have brought joy: it couldn't have come at a better time to lift him up, to remind him of his own value and, I found myself thinking, to make it clear to the doctors and nurses in this place that he is a person of significance, that he is worth saving. As soon as these thoughts crossed my mind I realized why I was so upset. They had been treating him like an old man with a degenerative disease who would inevitably decline, so it was pointless to push to get him back to where he was before he got the flu.

I took him the letter. It took him a while to take the meaning in. You've got to get up, I kept telling him. That film crew will show up in six weeks. We're going to do exercises while you're sitting in that chair, anything to get you going.

The physiotherapist provided weights to strap on his legs and hands. We did exercises twice a day whether he felt like it or not. He was soon able to work more often with the physiotherapist. He took three steps, then four. But then the weekend arrived again: no physio. By the Monday, he had relapsed once more.

The speech language pathologist didn't return to see him. The pureed, salt- free diet continued. The bowel stoppage continued as did the laxatives and even enemas, to no avail. My daughters and I asked to see the physician in charge of the service. We were worried: it was obvious he was sliding off the rails. We insisted that a neurologist come and see him because everyone seemed to assume that most of these issues were byproducts of Parkinsonian syndrome. We wanted a neurologist to confirm that or to make a suggestion about what to do. Though we asked repeatedly to meet the senior physician in charge of his care, that person never presented himself/herself. We left messages with the nurses and with the nursing station. We got no response to requests to meet or to discuss the situation on the phone.

So I badgered the nurse to make certain that the resident had checked him out.  Finally, a young woman presented herself to me when I was in his room. She was younger than my youngest, had longish hair and a certain droll wit. She was taking care of him when the young man with the feathery hair was off duty. Both seemed to think this bowel business was of no importance. The young man had already told me it was a bad idea to insist on a neurological workup. "Too many cooks spoil the broth," he said. "You just want to get him out of here."

I emailed our family physician to make sure she knew what was going on. She did. She was following my guy's test results electronically and was well aware of the physicians' orders. But, as I would later learn, she got no response when she tried to speak with the residents or the senior physician in charge. Finally, she went to the ward but couldn't find anyone to speak with in person either.

Things went on in this fashion for 12 straight days.

Finally, I had had enough. I was worried that he might have a bowel obstruction. I emailed a physician friend, very senior in her field, and asked if this was something about which I should fuss. She answered that bowel health is the key to health, so yes.

The next day I marched up to his nurse as soon as she appeared at her computer station and said I needed to speak to the physician in charge or there was going to be a problem. She promised to send a message. She did. No response. A few hours later, I went to the nursing station. The young woman in charge at the desk assured me that she had left messages for the physician in charge and I would surely hear back at some point. Rage bubbled over into language. I used the word "negligence" to describe his care. Within a few minutes, the young female resident appeared at my guy's bedside, palpated his belly, significantly distended by then, said he was okay but she could order imaging to make certain there was no obstruction. Where is the senior physician, I asked her. Why do I not get my phone calls returned? And I am insisting that you get this guy off this pureed diet immediately.

You'll have to speak to the speech language pathologist about that, she said.

So I tried. But it was Friday afternoon. The speech language pathologist was not at her desk. I left a blistering message.

Monday morning, still no response. At 12 noon, she answered her phone.

Oh, she said, I got your message, but I'm just back from a two week vacation, I have a number of calls. I have to go and see him before I decide whether to stop the diet.

You'll get him off that diet right now, I said, or there will be hell to pay. (What I was thinking was: how could she go off on a vacation without leaving orders to whoever was covering for her to check on how the diet was working? And if she had left such orders, why was the diet not withdrawn.)

Something in my voice must have convinced her that she didn't want to experience hell. The diet stopped at dinner. But they sent him rice pudding at dinner--made with milk.

By then, all I wanted was to get my guy out of that hospital.

By then, all they wanted was to get rid of him too, and along with him, his wife and his daughters who insisted on difficult things like communication with the physician in charge of his care.

For once, our interests appeared to be aligned.

But this led to the next problem: where could he go?

The care coordinator explained there were several options, none of which involved any choice on our part. She had long since applied for him to be admitted to three different rehab places: Bridgepoint, which she didn't think would take him because he needed the Hoyer (she suggested that Bridgepoint, a brand new rehab place with state of the art equipment, might be short of Hoyers); or the rehab facility attached to Mt. Sinai Hospital, which is closer to our house; or, Providence, which is by far the most distant. It is in deepest, darkest Scarberia-- far to the east. Please don't send him to Providence, I said, it will take me 45 minutes or more just to get there. Sorry, she said, it all depends on who has a bed available first

Providence is a Catholic facility that merged with St. Mike's and St. Joseph's Hospital in 2017. To get there I would have to cross many, many miles of the worst traffic in North America to visit my guy and watch out for his care.

I bet myself that Providence would be first to offer him a bed: I was pretty sure that since it is a part of St. Mike's, these folks could and would use their administrative weight to get him off their acute care floor and out of their hair ASAP.

I won my bet.

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