Dancing Beyond The Medical System

~ taran.a.rampersad@gmail.com

Awakenings

I awoke the next morning in St. James Medical Complex, Internal Medicine a little more refreshed than before as I soaked in the routine, from making the walk to brush my teeth and shower to having my vital signs taken and being given my medications.

When I first came into St. James Complex, I was told that they hadn’t ‘gotten my medications yet’ and that the nurses had managed to get them together. Today, they didn’t say that. It’s a strange thing to notice, but I was distracted by the sounds of the birds outside.

Philosophically…

I decided I would be outside today, casting off this medical cocoon where I had recovered sometimes despite the system itself only because the doctors and nurses were on their game, at least for the most part. I was treated well, with few exceptions, and the exceptions I understood even if I didn’t agree with. I was in a system that was constipated, overloaded, and was in need of adjustments.

Yet this morning was about myself. I had primed myself up to be my own advocate, and as most who know me know, once my mind is made up to do something I do it unless something extreme happens. It’s peculiar, since that mindset could easily be seen as being a part of why I had a heart attack in the first place, but I also knew my genetic predisposition.

Around my age, my father had had an emergency quadruple bypass. He died at 59. My grandfather, whose death I heard about vicariously, died at about age 65 or 66, with my father believing that my grandfather finally having a can of smoked oysters was the reason. My father’s side of the family didn’t live long, my mother’s side maybe 10 years longer or so. Mortality was not a stranger in this regard.

I’d also already faced my own mortality a few times, from the kidney failure to traumatic events that would be too distracting here. I’ve seen people die, some of whom I held a hand and gave words of comfort to, some I had seen go with far less dignity than I think my worst enemy would deserve.

Suffice to say that I had become a firm believer in the quality of life. We’re all going to die, but the quality of our lives is what matters, at least in my own personal philosophy, and with different people what we consider good lives and living well are different things. My father, after his quadruple bypass, for years would ask what his purpose here was and why he was still here. He eventually made up his mind or ignored it, I’m not sure, but he at least convincingly pretended to make peace with it.

I’m not my father, and to his chagrin at times, I never was – and was often not even close, though if you knew him and you knew me, you could see some things are alike. At our cores, though, we differed in ways that were important to us as individuals. He rebelled more readily than I about things, whereas I was generally more patient – but my temper made his look tame when I had had enough.

What was my life to be? Was I to live the rest of my life traipsing around hospital beds, one day at a time, as I was juggled through a system based on the number of beds, to be released when someone else saw fit?

Was I ready to be independent of the system? Did I want to die within the system, being shuffled around like sort of victim with no control? Taking medications as told without question, having to defend my own right to look at the own results of tests? Was this who I was? And how can I earn income while I’m flat on the bed? Is there an OnlyFans for bedridden patients that would help me pay my bills? I haven’t looked and I would be dismayed if there were. I haven’t looked because I do not want to be that dismayed.

I knew the medical issues. I knew what I needed to do to further see about my health. I also knew who I am, who I have been, and how I wanted to live. There’s a role in many medical systems regarding this – a patient advocate. I’d been one in the ER decades ago, listening to what people thought was important and translating that to the medical side even as the medical side was translated to the patient.

In Trinidad and Tobago, there are no obvious patient advocates. They might be around, but most hospitals I have been to abroad had names listed, where you could ask for one, and doctors and nurses sometimes even mentioned them. In the Internet age, searching for patient advocates through a search engine did not give answers, just more questions. Oh, and a complaints department – and complaints are generally what happen when you don’t have patient advocates.

When I first came into the hospital, my decision-making was compromised and at some level I had given over control. Was I ready to take control now? My vitals were steady. I had good oxygenation. I understood my heart attack and more, I understood what lead to it including genetics, a dubious diet, and not paying proper attention to physical symptoms.

One doctor had asked me if I would quit smoking, and rather than doing the standard thing about swearing on a dozen religious texts that I would never again that most people would do, I was honest: I don’t know. I had not missed cigarettes, but there weren’t any around. Saying I would quit was like a drunk driver standing in front of a magistrate after an accident swearing that they would not drink again – a combination of pathetic and unrealistic. I’d tried getting Wellbutrin toward that end, but guess what you can’t get in Trinidad and Tobago? Good guess.

I decided, a familiar strength returning to my mind. I would be leaving today. I was not going to languish in a hospital bed someone else could be using over things I was confident I could do as an outpatient. And if I died two steps out of the doorway, at least I would die in fresh air.

I could die. But I wasn’t living. In the end, we all need to make a decision like that at least once in our lives.

I was practiced, and had already played devil’s advocate.

The Subtleties of Rounds

I’d picked up on a few things while I’d been a patient, particularly when it came to body language and positioning. For example, in my previous hospitalization in the United States, the doctors had the chart at the foot of the bed, complete with the SOAP (Subjective, Objective, Assessment, Plan) notes of the nurses. I’d read them when I was bored because I hadn’t brought a book to the ER that night.

The doctor would flip through the notes, then put them back and talk with me at bedside – with nothing in between us. It was two humans talking, and the doctor was focused on me and I was focused on the doctor.

This was also how I learned to do things as a Navy Corpsman, where observing and communicating with the patient was done without any barrier other than our own minds – and paying attention to a patient was key. You have the eye movements, the neck movements, the body movements… so much is communicated. While the amount of non-verbal communication that happens between we humans is debatable, no one argues that non-verbal communication is not a part of communication. When it comes to medicine, patients give lots of hints that way.

Since I had come into this hospitalization, aside from Casualty, every doctor had kept the records between myself and them during rounds. They’d flop the patient records on a rolling table and stand behind the rolling table, only coming to the bedside to listen to my lungs. In conversation, the records were always between us, and I found the shorthand of patient history had lead to later doctors making mistakes.

On television, likely because of cameras, they do it this way. Is that why they were doing it this way? Maybe, with the younger generations, they had lost that.

I’m a detailed person, I give detailed history, and I had been disappointed more than once by doctors coming in and making mistakes about my history. This lends itself to a belief that the doctors are over-burdened, in a rush to get rounds done for patients.

What it seemed to me was a distance between the doctors and myself, the patient. There were doctors who did linger at the bedside, unguarded by the distance, and I appreciated them, but then they would get on the other side of that record and I could see their demeanor change, where I went from a human to a dataset, a matrix of vital signs and history, a statistic to be solved by statistics.

Nobody who has been laying in a hospital bed wants to feel like they are a statistic.

To get my point across, I would have to cross that barrier somehow.

Breaking The News

The doctors were making the rounds, and lo! 3 new doctors. The senior doctor, an Indian based on an accent she had taken pains to get rid of but left some tells with, was there with two juniors, one male, one female. The taller, the male, gave me a sense of surgery– the scrubs and stance, as well as a hunched posture that spoke to crouching over patients. The shorter one, a woman, had the sharp eyes of attention that usually signals a good non-surgeon. She hadn’t gotten the practiced eye quite yet.

The senior doctor had that practiced eye. I had been watching them as they did rounds, mannerisms and body language. To me, knowing how they acted and reacted was important because I didn’t know what they wanted to do with me, but I knew what I was going to do.

This wasn’t about them. It was about me.

Knowing the audience could avoid things going in a poor direction, and I wanted to avoid that. This could become a confrontation and I had every intention of avoiding that – and I have a history of being good at that, from the Estate to being a trained mediator to being a Director in a residential community. I need to know who I was dealing with, and with doctors there’s generally a solid baseline of intellect that the doctor wants to be appreciated for.

By the time they got to me, I got most of it right. I sat upright on the side of the bed, my feet in my shoes to remind me the course I had decided to take. It was also a cue for them if they were paying attention.

They reviewed the chart, asked me about any symptoms (which I hadn’t had for at least 4 days), and then told me that on Monday – tomorrow – I would get a referral for an angiogram and stay until I had one.

I gently explained that I had been there the 5 days, had met their requirements, and could go see about an angiogram myself rather than laying in a bed.

The senior doctor tried to talk me down, and I was firm in my position and said I was willing to go against medical advice (AMA). She took a breath, and while she was doing so, the young surgeon spoke up and, I believe, out of turn.

I had not taken into account the young surgeon’s defense of the system. “You don’t understand how serious your condition is”, he tried to be firm and went on – but all I heard was ‘blah blah blah’.

I cut him off, boiling over in a way that surprised even me, “I’m keenly aware of what my medical condition is, I can tell you I had a STEMI, that the anterior and transverse were probably where I suffered infarction, that I need an angiogram, and that laying here waiting around for the doctors of the day to make their rounds and decide what they will do with someone who they don’t want to become a cadaver on their watch. I have a life to live outside of here, with bills to pay.”

I didn’t realize I was that upset. Where had that come from? I wasn’t particularly happy about being upset, but with me it comes with a glee I can find troublesome. Fortunately, I had already put myself and the decision through the wringer, so I enjoyed the glee but didn’t give into it. This also meant I was managing myself now too more than the situation, which means I was not doing what I had intended and needed to stay on course.

The senior doctor had come over during this and placed her hand on my back, seeing I was upset. She had started treating me like a human while the juniors stood behind my patient record on the rolling table.

She was trying to calm me and she spoke to me clearly about it all. I relaxed a bit and spoke to her clearly as well, and it seemed that in the moment at least she understood, or did a convincing job of appearing so.

Doctors aren’t there all day when there are adventures and misadventures on the ward. They’re not there when your bed gets bumped all night in casualty, or attempt to follow the orders of rest with fluorescent lights blaring, or patients screaming in pain nearby. They don’t lay on a hot bed all day. They don’t enjoy the olfactory adventure when the diapers are changed on nearby patients only for them to fill the new ones as soon as they’re on and the nurse leaves. This is not to say that they don’t have their challenges, which they do, but they often don’t appreciate the patient experience.

When you’re young and fairly new to a system, you are taught why you do some things, and why the system is good – that’s how systems perpetuate for better and worse. It’s only later on that you see the flaws and, hopefully, empathize with those suffering the flaws. That’s one of the reasons you mix in the senior doctors with the junior doctors – experience. Somewhere along the way she had met a patient something like me.

Somewhere along the way she had learned that patients do get to make their own decisions, and sometimes they make the right ones or sometimes the wrong ones. She wasn’t convinced I was making a bad decision, I saw that, and her concern was real, but she at least at the surface respected my autonomy. She might also chew that young surgeon out, I expect, as he seemed to create an escalation in me.

He hadn’t created the escalation, by the way. He was the straw that broke the camel’s back, maybe, but the system had created the escalation. That’s important. That he was advocating the system to my benefit was appropriate. The system, however, was flawed from my horizontal position, while from his vertical position he did not see that.

The senior doctor wasn’t particularly happy about the decision, but she knew it was mine to make and that a brow-beating from a young doctor would only raise my ire more and make me less likely to listen.

She said she’d get the angiogram referral and prescriptions ready for me, but began explaining she had other patients to see, and I said in an understanding voice, “no, no, please, finish your rounds. I do not want to interrupt that.”

I may have seemed an unreasonable patient, but I am not an unreasonable man. The patients around me were all important, as I expected the next patient in my bed would be. They were, for the most part, bedridden, with apparent altered levels of consciousness, perhaps from strokes, perhaps from other things, but the bed I was in felt like a waste when someone who needed it more could be in it.

They moved on to the next patient, and I began the short process of getting my things together into the plastic bag I had thrown things in on the way to Port of Spain General. I did not enjoy becoming upset, or who I became when I was, and often I would become upset that I had become upset, which could send me into a spiral that was hard to get out of. Doing something, focusing on some benign and useful action, was how best to keep myself in check.

A Bit on Anger.

That gleeful anger was something I did not want running around in a hospital ward. It did not belong there, as I did not. To be clear, ‘glee’ for me comes from asserting myself, the stress release, and as I have told psychologists, is also something that scares me a bit because left unchecked and unmanaged, it has lead me to regret. I’m very aware of it and normally have it under control, but today it had bubbled over.

I had had a serious heart attack. I didn’t want another one. And also, I was getting what I wanted, so why was I still upset? Ego? Not being taken seriously? Or was it that I was really upset with myself for not being in control in the first place? I can’t tell you. I think it was a combination.

In retrospect, the anger had generally come from the dehumanization I had felt, some of which was self-imposed by giving over control. Of course, I had to at the start, but looking back on all that I had experienced, I put up with a lot – and I had allowed things to happen.

Nevermind the failure of our bodies is never a pleasant experience when we’re used to having a lot more leeway with them. As reality checks go, I’d had a big one, but when it comes to mortality, I’m a seasoned veteran.

A Few Words on Mortality

I’ve looked at my mortality more than once. Death is not something I fear, it’s a low quality of life I fear – a life restrained to a bed and breathing on someone else’s schedule, something I had been increasingly surrounded by.

People often mouth the cliches, talking about how wonderful life is and how grateful they are to have it, and yet talking about how great the afterlife they expect is. If the afterlife is so great, why are so many people going to extreme measures to live longer? Is it really about living longer or simply not suffering when death comes knocking?

For me it’s about quality of life, and not about money as much as my ability to live it. What is the sense of life without being able to enjoy it? Maybe seeing that flower, or that bird, or… feeling good about something, whatever it may be?

It’s my opinion people spend too much time fearing death. We’re all going to die. It doesn’t mean we should hasten the process at all, but death is a part of life, and fearing death doesn’t allow us to appreciate life. This is probably not a popular opinion or thought. I don’t know.

The Aftermath

Had I done the right thing by getting ready to leave? Maybe. I do know that I believed I did the right thing for me, what I wanted my quality of life to be, and how I wanted to live. I knew there was risk involved and that I was accepting that risk.

I knew I didn’t feel alive in the hospital. I felt like a rotisserie chicken rotating on a bed.

There wasn’t enough to pack to distract me, so I walked outside and enjoyed the sunlight and wind. It had changed in my mind, more free. I messaged a friend to come pick me up, or at least not to visit that evening – I could take a taxi home. He would come and get me.

I was ok with the risk, and weeks later, I still am. And yet, for the readers out there, it’s not something I would say everyone should do or that anyone should do it. I was trained in medicine decades ago, at a level where the United States Navy and United States Marine Corps allowed me to do things that in the civilian world only Doctors or Registered Nurses are permitted to do, and that level came with training that most people don’t get – including some doctors and nurses.

I had taken the doctors seriously, perhaps more seriously than at times I was taken as a patient instead of a set of symptoms and vital signs being given medications. I had taken, and continue to take, my condition seriously – more seriously than the bureaucracy I’ve encountered.

Since leaving, I did get that angiogram as a patient within a week of leaving the hospital. I did it privately, and it revealed the need for a triple bypass due to my blockages, so that’s something even now I’m working toward.

But the system. The system seems in dire need of assistance. And that will be my last entry on this topic.

Leave a Reply

Your email address will not be published. Required fields are marked *