Friday, 4 May 2018
Field Notes from a Medicare Disaster: Two
If a journey through our health system teaches anything, it is that each hospital is a character in the larger narrative -- each has its own personality, flaws, quirks, and story arc. St. Michael's Hospital is Dickensian, rooted firmly in Toronto's 19th Century when one's religion defined one's status, friends, diet, and prospects, and most citizens were Anglican or Catholic. There are religious symbols everywhere -- statues, crosses, more statues, stained glass -- throughout its warren of old and older wings which are as confusing to navigate as a prairie dog city. The ceilings get higher and the rooms bigger as one moves to the newer zones, not because people grew taller over the last century, though they did, but because there are so many more electrical cables and pipelines carrying the wherewithal of technological medicine. Fading, flaking colored lines painted on the floors direct visitors' feet to the right wing and the right set of elevators. During the week, the main floor, with its entry off Queen Street, is overwhelmed by visitors and outpatients moving shoulder to shoulder through its narrow halls, like salmon fighting their way upstream against the onrush of wheelchairs, gurneys, or construction crews moving in the opposite direction. It's like the Path under Toronto's downtown streets when the office towers empty for lunch and everyone hunts for a food court at the same time.
There are 900 beds at St. Mike's if you don't count the ones on which patients lie in the halls or in the trauma center waiting for a real one. Its reach extends right across Toronto. It merged last year with St. Joseph's Hospital which is many miles away in the west end, and with a rehab hospital/long-term care facility called Providence, which is in Scarborough, far to the east. It seems to be in a constant state of renovation. There are construction crews, trucks, staging areas piled with equipment and scaffolding all around the block-and-a-half it occupies. There is an elevated glass bridge connecting the 1950s version of the hospital to a shiny, glass-walled research center named after Hong Kong billionaire Li Ka-shing (whose story is also Dickensian). St. Mike's is a bridge between two groups who usually avoid each other, the very poor and the very rich. The realm of money--Bay Street/Banks/TSX/legal empires -- is to the southwest. The gay Village is northeast, the theater district is north west, the poorest parts of Cabbagetown are south east. Next door, in front of St. Michael's Cathedral, there is a small park with a few benches where the homeless sprawl winter and summer. When it's bitterly cold, they plunk themselves on the deep chairs in the hospital's front lobby, their worldly goods arrayed around them. No one rousts or disdains them as they sleep, not even the rich ladies clad in serious furs who have come for appointments upstairs. No one rousts the nicotine-addicted patients either when, in their gowns and not much else, they gather outside the front door with their IVs and urine bags hanging off their wheelchairs, smoking, smoking. St. Mike's treats the poor and the bereft according to Christian principles. Yet if one is not a Christian, and many of St. Mike's patients are not, the Christian heart on its sleeve can be disconcerting. I went there first when eldest daughter gave birth on its maternity ward. The elevators opened on a larger than life-size statue of the Virgin Mary. What's a nice Jewish girl doing in a place like this? I asked her. She shared a room with a woman whose female relatives all wore hijabs.
She was there because she had found a wonderful doctor at St. Michael's family practice unit, a woman so smart, so caring, my Dad would have asked her to join his practice. The family practice unit is a little north of the hospital, on Bond Street, beside the former townhouse of William Lyon Mackenzie, first mayor of Toronto, ardent publisher, anti-corruption agitator, rabble-rouser, democrat. He was also a leader of the 1837 rebellion which failed to usher in a brand new democratic day while ushering out the Family Compact who ran everything their way. (Two of the rebels were hung, others were transported to Australia. William Lyon Mackenzie fled to New York where he worked as a journalist for ten years until it was safe for him to return, after which he fell to rabble-rousing again.) We owe thanks to him for many ideas about government that we now consider self evident. His house was saved from destruction when his grandson, Mackenzie King, was Prime Minister. It's a museum now.
Two days after his fall and his evacuation from cottage country to St. Mike's, he was moved to an upstairs bed. He'd spent 48 hours in the bowels of its trauma center. He'd lain in a cubicle separated from its 24/7 hustle only by curtains. There was no daylight, no darkness either, the air was neither warm nor cold, humid nor dry, there was no season at all. Curtains did not grant privacy or stop the sounds of others' suffering in the cubicles nearby. He needed help with all his functions. This was provided by nurses who never batted an eye at what they had to do. Patients in his state, only part way to lucid, don't seem to care about these indignities. Perhaps they aren't indignities at all, perhaps we just think of them that way because we have forgotten our dependent childhoods. Or we remember too well. In a short time, it is no longer indignity, it is the new normal.
They moved him upstairs to the neuro ward, the place where injured brains come to heal. There were windows along one wall with a view of brick walls and rooftops.There was a bathroom for patients able to make their way to it. No one in that six bed room could. There was a cross over the door. He is a convinced atheist but wasn't really in any condition to notice or object, at least not at first. After he noticed, it made him laugh. A nurse sat at a desk in the center of the room at all times, keeping careful watch on each patient. It was not an ICU, but it wasn't a standard hospital room either. Beep-beeping machines read out how much oxygen was in his blood, graphed his heart rate. The urine bag showed his kidneys were functioning. The pressing questions I had were: when will he remember his computer passwords? What if he can't? How could I have been so stupid as not to write them down?
About four days later he was moved to another room with four beds. One was occupied by a young man who had been in a terrible accident. He had lost a hand and a foot and his head was bandaged and he moaned frequently. The language seemed to be Tamil but we were never sure. There was another older man on the other side of the room who had constant hiccups and whose wife came only in the afternoons because they lived outside the city. The fourth bed was empty. Slowly, slowly, panic died away as he became more and more himself and began to do what he always does which is to make friends with whoever is near by. Soon, he remembered all his passwords. But he couldn't remember the accident, and he kept repeating the same questions about it over and over. It was as if he couldn't take in new information about it, as if any new detail given to him was immediately erased.
On the third or fourth day, I cannot remember which, he was able to get up from the bed and sit in a chair. He needed help, but he could do it. They took out the catheter. Soon he could make his way to the bathroom using a walker. This was good because the nursing care was less attentive in this room. We often had to go in search of supplies, or the meal tray. The nurses seemed to spend most of their time sitting at portable computer stations lined up in the hall beside each patient room door like so many study carrels. They stared at screens indicating the scheduled medications for each patient, their diet restrictions, the names and emails of the residents in charge, phone numbers of family members, physio delivered, social workers consulted, tests ordered, test results returned, and on and on.
Eldest daughter had by this point become militant about finding out what in hell was going on with him. The strange gait, the unsteadiness, the gut issues, the sepsis and now this terrible fall -- we need a neurological workup, she said over and over, we need to know if this is about those ventricles, because if it is, there's a fix, you put a shunt in the brain to drain some of the cerebral spinal fluid away and things get better. So we prevailed upon a resident who came in to see him to ask a neurosurgeon to come by. Eventually, a very clever fellow appeared, in his forties from the look of it, fresh out of the operating room, wearing surgical cap and scrubs. He asked a lot of questions, good, sharp questions, said he could not offer an opinion without more investigation, said his office would set up an appointment after discharge. We liked him immediately. He was the first physician encountered who seemed very interested in the unfolding events that occurred before the fall. We explained that he'd already seen a neurologist who had ruled out Parkinson's after ordering a CT scan. Have that sent to me, he said.
That turned out to be difficult. It required phone calls to the physician who had taken over his file from his former doctor who'd retired. The secretary muttered about a fee in exchange for a letter to the neurologist asking for the scan. I muttered back. The letter was sent. The neurologist 's secretary needed a signed letter of authority to release information, which required a trip down to that office, followed by another trip to pick up the data. Was it a disc? A thumb drive? I can no longer recall. The scan had been done in another hospital only ten blocks across town and should have been instantly transmissible electronically. But apparently that hospital cannot transmit data direct to the St. Mike's network. Was this a system problem? Or a system-wide choice to protect privacy? So far as we were concerned, hospitals ten blocks apart might as well have been in separate countries.And what if I had had as much difficulty getting around as he was having? What if he didn't have a family member able to help? What if my language skills and prodding skills were not up to this task? Would information transfer have stopped right there?
It had been almost as hard getting information about his condition from the team in charge of his care on the ward. Whenever a new resident entered the room, which was frequent, I asked: did he have a concussion? He'd hit his head against a stone wall hard enough to break that stone, so of course he had had a concussion, though none of them actually confirmed that. I had been told there was no brain bleed or undue swelling down in the trauma center. So why did I keep asking? Because he was so slow to get on his feet. There didn't seem to be a plan to help him, either. No one mentioned physio, that the brain benefits from carefully tuned and practiced movement. I kept explaining his out-of-the-box brilliance, how fine a mind he has, as if to say, come on, this is a man who is really worth saving, so what must we do to heal him? They were so vague I came to the conclusion that, given his age,they were writing him off.
But it is also true that even as I asked about concussion, I didn't really want to hear anyone say yes, he had one. I'd been reading about the effects of concussions on professional athletes who'd had their bells rung over and over, some of whom were so troubled that they'd died too young from suicide. Several, who'd allowed their brains to be autopsied by scientists studying the effects of concussion on the brain, had developed tangles of proteins where they should not be. Forty years earlier, my guy had made a film about Mohammad Ali who he considered the most marvelous, graceful athlete to enter a boxing ring. By the summer of his fall, the summer of 2015, there was no more floating like a butterfly and stinging like a bee for Mohammad Ali. He walked with terrible difficulty, shuffling, halting, shuffling again. His voice had become a low, rough rustle, instead of his old confident shout. He was said to be suffering from Parkinsonian syndrome which some doctors connected to the hard shots he'd taken to his head over the course of his career. Well my guy had had his bell rung doing sports too. I'd heard the stories. There was that hockey puck to the eye when he was a high school goalie. It had knocked him out. His eye was swollen shut for a month. And what about the relentless pounding he took on his high school and university football teams?Maybe he was going down the same path as Mohammad Ali? Later I learned that Ali had had bouts of sepsis too.
But the neurologist had ruled out Parkinson's, I reminded myself, joining Parkinsonian syndrome to Parkinson's in my head. Why not? A similar name, surely similar causes and effects?
Finally, his nurse said he was to be discharged the following day. The senior doctor in charge of his care at last sat down to speak with us, right in front of the other patients in the shared room, just as he'd sat with the hiccuping man and his wife the day before to explain the man's probable fate-- not a happy one.
It seemed to me I'd been chasing this man for too long: he was never around when I was there to visit and I was there every day for two weeks. We were like ships passing in the night: either he had done his rounds already when I got to the hospital, or he planned to do them after I left, and though I often went to the nursing station to ask after him, he was nowhere to be found. The nurses said I should leave a message, which I did, but follow up was nil. He sat in the only unoccupied visitor's chair while I stood beside the bed. He asked again exactly what had happened, how the fall had occurred. We explained about how we'd all been sitting around visiting for a few hours when he got up to go to the bathroom, but no one actually saw him fall, so we couldn't say whether he'd stumbled, or something else had happened.
I'll tell you what happened, he said. It's like this: he was sitting for a long time, and then he got up and walked toward the steps, and he probably had an older person's blood pressure moment. Anyone over 60 should not move quickly after getting up from a chair because the blood pressure can drop suddenly. You need to give your heart time to catch up. Okay? That''s what likely happened. So count to ten after you get up from now on, okay? And you'll be fine. Yes there was a concussion, of course there was, but no bleed, no untoward swelling, you'll be fine. Just fine.
I clutched at this explanation and this reassurance like a safety rope in a white water raft. And after I got him home, I became instantly religious-- about counting out loud to ten whenever he got up before I'd let him take a step.
I waited for him to become just fine. But he was more and more unsteady, the walk kept getting worse.
I began to count the days until we could see that neurosurgeon. And asked eldest daughter to find out if her physician would take us on.