Unfortunately, I am enough of a veteran of my father’s hospital visits for life-threatening conditions to be in a position to be helpful. Believe me, I am aware that ignorance is most frequently bliss. However, since I am armed with this knowledge, and you might find yourself someday in this situation, I want to write about it.
As I mentioned last time, time in the hospital loses meaning. It’s hours of waiting followed by short frantic interactions with people who speak an incomprehensible language and don’t care if you understand them. They are totally sure in their point of view despite information that is incomplete and sketchy. Many of them are still learning. They ask the same questions over and over. Plus, it is a Kafka-esque environment where the professionals in charge of your parent’s care frequently concoct ways to keep them in the hospital longer despite the well-documented fact that being in the hospital is actually dangerous, both short and medium term.
But who are these people? A short guide:
The surgeon: if you have seen any movie involving a cocky fighter pilot (Top Gun, Independence Day), or have seen the character Turk in the show Scrubs, you know the type already. They do one thing very well and have trained it a million times, so you should have confidence that they can execute the operation your loved one needs. Unfortunately, it also appears that they have given up on doing anything else well, especially communicating. What makes them particularly skilled in the O.R. – laser focus on the task at hand – makes them particularly clumsy outside it. For example: the doctor who was going to place my father’s pacemaker called me the day before the procedure and clinically ran down all of the ways my father could die either during or as a result of the procedure. Ironically, his name is Dr. Love. Seriously. The surgeon who did his hip replacement breezed out after his surgery (delayed 6 hours – it’s hospital time after all)
The cardiologist: as noted last time: my father’s main cardiologist was right out of central casting. His name was Dr. Rosen and he was a six-hundred year old man who stood about 3 feet tall and had a loud gravelly voice and won my father’s confidence instantly. Too bad because he is the one who turned a 72 hour hospital visit into a 2 week odyssey. From the instant he noticed my father’s irregular heartbeat, he turned into the single person who controlled his fate and with it, my family’s. He spoke in complex medical jargon into my father’s bad ear, so they can’t hear it anyway. Hence, the need to be so loud. They are risk averse and are the gatekeepers to actually being able to get any other procedure done. They have no incentive for your loved one ever to leave their watch — that could be dangerous! Also, they see heart problems everywhere in your life. Did you fall asleep once watching Fox News? It’s probably because your heart slowed down so we better run some more time-consuming and expensive tests. Also, you obviously are high risk so you need to stay in the ICU and not on the regular floor where you can at least look out the window and see whether it’s day or night. By the way, they round at irregular times, so if you want to wait and have a conversation with them, you’ve lost your whole morning.
The general practitioner: this is the main doctor who is the focal point on the floor through whom everyone is supposed to communicate. In other words, he is useless. He is at the mercy of the cardiologist on the one hand and the surgeon on the other. He has no control over schedules. He only knows what the nurses who have seen you have told him or what’s in your record. He doesn’t prescribe medication — only the much more expensive specialists can do that – and doesn’t get to know your parent. Also, he is the one who demands the incessant 2am testing that is keeping your loved one awake and in need of more medication when what they actually need is old-fashioned sleep.
The anesthesiologist: almost as much as the surgeon, this is the person who really determines whether your loved one lives or dies in surgery. They work somewhat in the shadow of the fighter pilots who actually do the cutting and are the heroes of the stories than end well, which you have to remind yourself is most of them.
The social worker: at some point, with any luck, your loved will be discharged from the hospital. When this happens, the hospital is intent on achieving their main goal, which is not the care of the person you love but minimizing their future liability. The social worker who manages the discharge will be looking for a suitable destination — that is, in a heartfelt gesture in a hastily arranged meeting you have only because you happen to be there when she flits across the hospital floor, she will give you a printed out list of rehabilitation centers and ask you to circle things on it. Then she will take that list and not return your phone calls. Just before the discharge the case manager will come down from on high and inform you which of your choices actually worked out. Which brings us to…
The case manager: the case manager is the one who in the hospital monitors the progress of your loved one. In other words, can we charge for everything we’re doing and turn a profit while minimizing our risk? Other than that, I can’t figure what this person actually did. I only spoke to her once in the almost 2 weeks my father spent in the hospital, while he was in the ICU and I was increasingly convinced he would never get out. She seemed to be totally at the mercy of what the specialists were saying. In theory, she should be on your side in trying to minimize the time in the hospital, and therefore costs. Someday in a fixed payment world it will work this way because there will be no rewards for extra time and procedures. But not yet.
The nursing staff: in the grand scheme, they are the only ones who deliver care. Not medication or procedures, which the doctors and specialists seem to have forgotten is not the same thing. Care has many dimensions and encompasses the whole person: the part that means making patients comfortable, touching their hair, talking to them and not at them, looking them in the eye, noticing that they haven’t eaten or had enough ice water. They take the time to figure out that your parent hears better out of one ear than the other and actually will speak to her in that ear. They often know when what the patient really needs is a decent night’s sleep and not more tests. They tend to the half of the equation that is the person’s will to live. Whatever nurses are paid, they should earn more.
The clergy: every hospital has a non-denominational member of the clergy on staff. They will approach you and gently probe how you’re doing emotionally and spiritually. I haven’t felt comfort from this entreaty from a total stranger, although having seen the state of some of the families in the hospital, I get it. It seems like a lonely and difficult job that must attract some of the most compassionate people on earth.
The ultrasound/X-ray technicians: as a Sandwich Generation father who has experienced infertility and the multiple ultrasounds that come along with IVF treatments, I have met more than my fair share — and yours — of ultrasound technicians. Most of the actual techs I’ve come across are more akin to nurses in the way they deal with people and perform their functions. Suddenly my father became a huge clot risk because of his irregular heartbeat and because he was horizontal for so long (Kafka alert: he was only horizontal that long because the hospital kept him in a bed for a week before surgery!). The technician who came to check that his veins were clot-free had instructions to roll his leg to check them. Which of course was impossible because he had a broken hip. She knew that this was dumb so did the best she could, telling jokes and flirting with my father the whole time. He loved her and did whatever she asked. Also, she took the time to figure out which ear he could hear in, which made asking him to do things much easier. I’m just saying.
The cafeteria staff: these might be the nicest people in the whole place. If you find yourself in a hospital for an interminable period waiting for your loved one, go talk to someone who works there. It sort of proves that the less someone earns in the hospital, the more compassionate they are.
Other patients: Leonard Morse Hospital seems to exist solely to administer to elderly patients in Metro-west Boston who have broken a bone. If you ever wonder where your Medicare money goes, it flows to places like this all over the country. And I found that these elderly patients seemed sicker, paler, older, and closer to death than my elderly father. Like everyone else, I see my father as he once was.
Finally, you will meet other families in the hospital. Many are going through the worst moments of their lives, whatever the outcome. I met one husband whose wife had been in the ICU for almost a week with a very dangerous and hard-to-kill stomach ailment, and he had been sleeping on a chair ever since. He was so tired that I couldn’t convince him that a good night’s sleep in his nearby bed would do him good. In the surgical waiting room, I saw other anxious families checking the clock almost in rhythm with me. Some are just arriving and running the gauntlet of admitting their loved one. And others, like me, are handling discharge paperwork and escort their loved one onto their next destination.
But that part of the story comes later.