Miss K came to the hospital as a wreck of a person: 48 going on 88, lives at a nursing home, has no immediate family, weighs twice what is considered healthy, can’t breath on her own- is tied to a breathing machine through a tube in her neck, and can hardly speak; has big wounds in the back and all sorts of scary resistant bugs, has been brought to the hospital because she has a fever and her blood pressure is almost non-existent.
The sight was eerily familiar for a hospital in that part of Chicago, with its predictable demographics and illnesses. The pathos was increased only by the intensity of the events.
Wonder what it would feel like to hear this story as a lay person: no matter how hard I try, as a doctor, my opinions on such matters are bound to be fore-shadowed by the layers of experiences and education. Pulling yourself out of a set of learned behavior and patterned thinking is very very hard indeed.
No matter what your vantage point into these events is though, it’s hard to miss a discomforting undercurrent of thought: how would anybody feel living Miss K’s life anyway? Every morning as I made my daily rounds on my patients, Miss K seemed to be choking up on thoughts that she could not let out; constipated with emotions that she wanted to vent off. Her being on a breathing machine for so long had left her unable to verbalise speech. She would make a great attempt to motion her lips and tongue to try and help me understand what she wanted to say, but despite her best efforts I would still not “get it”. She would not drop the attempt that easily though, still to no avail. I would try and make a very sincere guess at trying to understand her, but my apparent stupidity would perhaps baffle her.
Then we would turn the tables, I would start asking her a few close ended questions, expecting a nod for a yes. Still all I got was a very difficultly maneuvered sideward motion of the neck to denote a no. Writing to communicate was out of question; her hands had long fallen out of use due to gross swelling, as had the rest of all her body parts. The repertoire of my ability to predict her thoughts, and that hardly amounted to much anyway, severely limited such means of communication. Sometimes Miss K used to get so frustrated at the inadequacy of what she was able to communicate with me, she would just drop the attempt, stare into the ceiling and fall into a slumber of deep despair.
This was in her best day. On the others, she would never be aware enough to try and communicate; she would either dip in and out of lucidity, or she would just flop in the bed unconscious.
And then there would be the scary days. Days when we would be so close to losing her, we would start a vigorous attempt of resuscitation, when we would make last-ditch attempts at reviving the heart. One of those times, we ended up breaking her ribs; more than once- we shocked the chest with electric current powerful enough to rattle the whole body. Somehow she managed to comeback from such gates of death, though she had to go through a ride-through-hell doing so.
Her God would not let her live. And modern medicine would not allow her to die in peace. Miss K in the middle, was tearing apart in this stalemate.
For me this was an uncomfortable and an unfamiliar emotional territory. Having been brought up, educated and thus far trained in a different cultural and socioeconomic milieu altogether, I have never had to go through such a gut wrenching upheaval of emotions, even as a care-provider along the sidelines of many a deathbed. In my culture, death was never really contested this intently between man and the forces, leaving behind horrifying remains of a bloody, grisly war. When it was sufficiently clear that death was imminent, it was accepted with a modicum of decorum as an eventuality that offered no escape.
Such shoulder-dropping at the altar of death sometimes appeared unfair- at times even cruel. Back then, many a times we were left wondering of the life that could possibly have been saved: the mother who meant the entire world to her children, the son who was the only reason the elderly parents lived their life for, the kid who would not see his sixth birthday, for the want of a little more advanced medicine, a little more sophistication, a little more resources. Technology and more advanced medicine, at such times appeared to be the all curing panacea for our health woes; that was until I came to the US and saw technology’s underbelly. Modern medicine could save lives, but sometimes preventing a natural death without a concern for what remained of a life was repackaged and dished out as a life saved; or at least it was mistaken for a life saved.
In the back rooms, in the hallways in the unit, care providers often wondered if they would ever subject themselves to such agony as an appendage of the machine; with Miss K it was hard to gauge where man ended and the machine started. They of course had the luxury of not having to be in that unenviable position, the very edge of the precipice of death from where modern medicine could not exactly bring you back to life, but could still manage to prevent you from hurtling down to death right away- forcing you to die the agonising death of a slow poison instead of a swift and honourable transition in peace.
As if all this was not troubling enough for all of us who had seen Miss K suffer, we did not know if all this that we had been doing to her was what she really wanted for herself. What if she did not want this torment tied down with the machine? Time and often, such feelings of guilt tore us apart. We would ask her if she wanted the tube down her throat, attached to the machine huffing and humming, and the vigorous compressions when her heart stopped. Most often she would just return a vacant stare. Every once in a while though, the stares would be punctuated by tears that welled up in her eyes; still not be able to let a sob out. She would just give a very gingerly negotiated side-ward motion of the neck. Guilty emotions choked our hearts.
With all the ingenuity of modern medicine, when we thought we were finally beginning to checkmate death itself, we are now beginning to realise may be we were double-crossed. Our intelligent science, the sophisticated tools, the wizardry of our care providers was clever by half after all: we are still losing the war and oftentimes we are being thoroughly disgraced en-route.
One day we gathered up her close relatives by the bedside: a sister and the sister’s two daughters. The sister seemed visibly distressed with all that her sister, younger to her by almost 10 years, had to go through. What’s all the pain for: she seemed to question. Every day she would religiously turn up at the hospital, look at her little sister and mutter “poor thing” part out of benevolence and part out of desperation. It was not hard to gauge the sister’s torn state of being. One half of her seemed to suggest may be it was time to let go; to let nature take its own course. The other was even more lost in the possibility that a miracle could possibly materialise out of the deep recesses of modern science to bring her back.
The sister however could not decide how to proceed with with Miss K’s further care; the onus of making that decision fell onto her two twenty something daughters, who were in fact the powers of attorney. They were even more bewildered they had to make the decision, so they put the question back to her aunt. “What do you want auntie? Do you want them to compress your heart when it stops beating?” Miss K held her gaze for a long time. She seemed to be lost in her own reverie, not caring the least about the commotion that was going on around. After a while, she nudged her head down. “See that” the two nieces said. “She said wants the compressions.” A look of relief crossed their eyes.
This has come to be modern medicine’s quicksand; enthralled by the armamentarium of tools and skills we have come to gather, modern medicine has been making promises of an infinite loop of health and life; and suddenly death has come to be a distant concept for us. No is not an answer; letting nature take it’s course when medicine has run out of options somehow appears grossly incompetent. Put such hollow promises in place, couple that with a system where patients and their surrogates are always expected to make their own decisions, with doctors too happy to play second fiddle, and we have a potent recipe for disaster.
After that event Miss K closed her eyes. She would not really wake up even if we called out her name. She moved in and out of consciousness. A few days later, the family made a decision to move her to another hospital. They said may be she would get better there. I for all my training and education, could not figure what we could possibly have done different, done better. Or, what the other hospital for that matter could do different. Well, they did advertise on the radio that not only did they practice cutting edge medicine, but they created it. It was not hard for the harried sister and nieces to buy into that promise of a miracle. At least, they had the radio ads to fall upon; may be that was where the miracle they were looking for was.
Miss K was in the hospital for a total of 21 days. During that period, at least 4 dozen notes were written on her- replete with daily exam reports, assessments, plans and just plain question marks of uncertainty; an equal number of doctor’s rounds were made, round the clock down to the minute nursing care was provided, close to 30 odd x-rays were done with more than half a dozen CTs and MRIs, medications worth just a few cents to those over a thousand dollars were administered. We scratched our heads, sweated hard, pondered and questioned, tried something one day, and tried the opposite the other. Nothing really worked. Nothing changed. Miss K went from being miserable to miserable.
And this is how things have been for Miss K for the last 2 years. In and out of one hospital to a nursing home to another hospital, intercepted just by the wail of one ambulance siren to the other.
How could things have gone so wrong for Miss K, and for our health care system? Why did Miss K have to suffer the way she did? How come our health care system has come to tolerate and even encourage such gross misappropriation of resources? Why did she go on getting aggressive, expensive care when it was not really care; when doctors more or less knew they would not be able to make things any better for her, this way or the other in terms of the quality of life? Was it because the family “wanted all that could be done”? Was it because the doctors did not have the spine to talk to the family and firmly say, any further care would not be beneficial? Was it because someone was benefiting out of the whole sordid affair?
At the end of it all, the hospital ran a bill in excess of $ 200,000. Later I learnt, the hospital had been reimbursed a quarter of the amount of the total bill.
One night at about 2 in the morning an ambulance came to whisk Miss K away to the other hospital. A fresh new patient; a fresh new doctor; yet another admission note. A glimmer of miraculous hope for the family. What all this meant for Miss K, I don’t know. I had a feeling she sunk further down into her shell; bowing and nodding for every one else’s convenience, waiting in the balance for the transition to arrive.