“Who do you think is responsible for your child’s care?” The question startled me. I had been only half-listening to the nephrologist’s observations as he plunked away on his laptop’s keyboard and lectured on my son’s need to gain weight during another routine time-wasting visit, ostensibly so the nephrologist could closely monitor the status of my son’s kidneys, and take appropriate action as necessary, but really just so he could get paid for something until the kidneys failed and the kid had to go on dialysis or get a transplant. I knew the kid needed to gain weight, but I also knew that his weight loss had nothing to do with his kidneys, and everything to do with a complication of bone marrow transplants called graft-versus-host disease (GVHD), which had recently reappeared.
My son, the patient, was ignoring the guy, too. He was sitting on the examination table crossways, his legs dangling off the floor, fiddling with his iPhone. He and I both had spent interminable hours in doctor’s offices and hospitals. My son had been first diagnosed with leukemia at age seven, from which he was “cured” with a bone marrow transplant. He then relapsed about eight years later, for which he received another bone marrow transplant. I’m not so foolish, nor do I think is he, to believe that this latest marathon of pain would be his last. But for now at least, he’s doing okay, well enough to live as a more or less normally-functioning human.
During the course of his second transplant his kidneys failed. Not permanently, but for about a month, during which time he was on dialysis. They only came partially back. His creatinine runs about 2.5 now (about double the normal range), and his BUN in the thirties and forties (again, about double the normal range), except when his graft-versus-host disease flares, which pushes the numbers to about 3.0 and into the fifties, respectively. I figure he’s got the kidney function of roughly an eighty year old man, which is not at all surprising, considering the insults his kidneys have suffered through the years of treatments. In some respects, it amazes me they still function at all. Had they failed permanently, as sometimes happens with transplant patients, I would have considered the success of the transplant an otherwise cruel hoax. What sort of Faustian bargain is it to trade death by leukemia for the pain of a transplant that yields permanent incapacity?
The nephrologist says the kidneys are operating about thirty percent of normal. But nature designed humans with a redundant filtering system and generous excess capacity. Man has two kidneys, each of which are sufficient to do the necessary job for the whole body. Thus, even at only thirty percent of normal, my son’s not anywhere close to needing dialysis or a transplant, but I figured it would be good to have his condition monitored by a nephrologist, which explains why we were there. Hopefully he’ll not need a transplant for a good ten, maybe twenty years, when, if nothing else arises, he’ll have the kidneys of centenarian.
The kidneys are impressively important little organs. They do much more than just filter waste products from the blood. One of their extracurricular functions is to determine when the blood is low on red blood cells—the type blood cell that carries oxygen to the organs and tissues. They do this by testing the oxygen level of the blood as it is being filtered, and sending a hormonal signal to the bone marrow to create some more red cells when the level drops too low. The kidneys, in other words, are the endogenous dopers. They provide the natural EPO (erythropoietin) for stimulating red cell production. Presumably natural selection never anticipated the need for enough red blood cells to propel a cyclist up a mountain faster than all his peers, so the kidneys shut down EPO production once an acceptable level of oxygen in the blood is reached, which is where artificial EPO, i.e., blood doping arises.
Malfunctioning kidneys don’t often provide a level of EPO to keep the body sufficiently supplied with red blood cells, so anemia (a low red blood cell count) often accompanies chronic kidney failure. The treatment is for the CKD patient to get the same injection of artificial EPO as a professional cyclist might, except less clandestinely.
My son had been taking monthly EPO shots since about a year after his transplant, as it had by then become clear that his kidneys were not producing enough EPO to keep him from being mildly anemic. His GVHD, which acts like an autoimmune condition but is specific to bone marrow transplants, exacerbated the CKD and contributed to the anemia, through suppression of the marrow. But in about April of this year, after he suffered a severe infection, “walking pneumonia” as the doctor had characterized it, the GVHD cleared up, and so did the anemia. He quit taking the shots.
Then the GVHD came back within a month or so after he started his first semester of college (around September). It restarted gradually, but by November, he was again slightly anemic, and again needed the EPO shots (and immunosuppressants and prednisone, which are specifically aimed at combatting GVHD). As before, I figured the EPO was ancillary to getting his GVHD under control, that his kidneys produced enough EPO and his bone marrow enough red blood cells when the GVHD was under control that EPO would not long be needed. I had explained all this to the nephrologist, and he had the labs showing the anemic condition and the GVHD (mainly indicated in liver function tests) had already been resolved in the month since we had restarted EPO shots, etc., and that the plan was to reduce the EPO until it was no longer needed. After my explanation, which I thought was just reiterating what he already knew, since my son’s primary care physician had consulted with him on all this, I sort of drifted away, idly daydreaming while he droned on about this or that, until I was jolted back to the moment by his question.
“Who do you think is responsible for your child’s care?”
My knee-jerk response to being startled out of my reverie was to answer, “I am”.
That didn’t sit well with him. He went into a diatribe about how, though he believes that doctors and parents of a sick child need to be on the same team in trying to care for the child, he felt like he was being ignored, and it was creating an untenable situation for him.
I really didn’t quite know how to respond to that. Is it my responsibility as my son’s caregiver to stroke a nephrologist’s ego? He was correct that he was mainly marginalized, but only because there wasn’t much for him to do. At least not yet. The kidneys were continuing to function about where they had been functioning, with a spurt downward due to GVHD that was quickly alleviated as soon as the GVHD was resolved. There was really nothing to do but monitor labs, which were always provided to him each time they were taken by his primary care physician. The visits to his office were mostly a waste of time. There’s nothing a nephrologist can do for sputtering, but functional, kidneys until they get near the point of failure.
It was only afterward, after reflecting upon the exchange, that I realized how much his question exemplifies everything that is wrong with medicine, particularly pediatric medicine, and is indicative of the sort of attitude that will ultimately bankrupt the medical delivery system.
I realized that I should have answered his question with a few of my own: Did you hire me, or did I hire you? In which direction is the money flowing, from you to me or from me to you? Was it you who held his head while he vomited blood that was draining down his throat from an incessant nose bleed during the transplant, or was it his parents? Did you pick him up and hold him over a portable toilet so he could evacuate his bowels, the need arising because of the emergency dialysis he was undergoing, or was it me? Will it be you that grieves when the terrible burden of this disease finally remises and his casket is lowered into the ground, or will it be me and the rest of his family? If you would like the burden of being responsible for his care, I might just let you assume it, because frankly, I’m a bit worn out, and particularly from having to stroke the intellectual egos of insecure doctors.
Besides, I could not see what his problem was. His stated concern was that we didn’t continue the EPO when the anemia had resolved. I told him the plan we had for ensuring we didn’t, but he apparently didn’t like that we had formulated a plan without his approval.
The nephrologist’s attitude was basically that he’s the big dog, and all the little dogs, most definitely including the parents, need to scurry behind him, sniffing at his butt. After berating me for having taken the initiative and getting his GVHD fixed without his permission or oversight, and me informing him that we would be glad to have his blood count checked before giving him another EPO shot if that would make him happy, but that he would be away again in college and it would therefore be logistically difficult to include him on every little thing that happened, he then had the gall to tell me we could go anywhere down in Auburn to get the blood test done—that it didn’t matter. I wanted to ask him whether that meant it was me or him who was now responsible for my child’s care.
It is a common attitude among pediatric specialists that parents are at best hindrances to the child’s care, and are never partners in it. I’m not sure what sort of drugs they put into the coffee of pediatric medical residents, but they all seem to come through med school and their residencies with profound confidence that they are smarter than everyone else, and particularly the parents, and that their medical analyses are utterly infallible. They learn early on to treat the parents as simple peons to be ordered about and made to wait on them. They always hate a parent with initiative. They really hate a parent who understands the medical issues facing their child. They utterly loathe being questioned by the parent on anything.
But the parent is the customer. Outside of the child, the parent is the only one with a vested interest in the outcome of the care. If a pediatric specialist really wished the best for the children they see, they would relish the idea of a parent who took the initiative to get a child the best treatment and care he could. They would welcome having a deeply concerned and involved parent, and would not consider questions posed by the parent about the child’s treatment an affront. That’s what the best ones do, a few of whom I’ve encountered in my time in the great bureaucratic maw that is a children’s health system. But too many physicians seem to have attended medical school to resolve adequacy issues, so feel threatened anytime a parent expects an explanation or takes the initiative to learn the intricacies of the medicine well enough to understand what is going on. I told the nephrologist that I wasn’t willing to pretend stupidity just to make him feel better.
But this is just a particular instance of a much larger social problem, one which resonates with the rearing of children generally, and with the medical care delivery system as a whole.
Why would anyone want to have a child if by doing so they spend all their time and energy and money on something over which they have practically no control, and from which they will see practically no benefit? The doctor didn’t realize it, but he was basically asking the question of who was responsible from his perspective as a representative of the state and of the culture comprising it. He was letting slip what all similarly situated state actors–from teachers and principals to social welfare workers to pediatric nurses and doctors, etc– really believe about children: That it is the state that is responsible for the children and the state who will reap the benefits of their rearing. The parents are only minions, there to do the state’s bidding in the rearing of its next generation. The state’s (meaning all levels of government in this context) attitude prevails in every arena—health care, education, values– that matters in child rearing. The attitude might explain, at least in some measure, the plummeting birth rate in the United States, which is now below replacement levels (at about 1.9 children born per female, whereas 2.1 is considered necessary to replace the existing population). Why have children, when doing so effectively means employment as a lower caste worker in a vast bureaucracy who cares not a bit of your needs and priorities, but instead is only concerned with its own?
Had I imagined that having children would subject my life to the control and dominion of human beings even more arbitrary and capricious than the nature they fancied to command (the pediatric specialists like this nephrologist), I would have been sterilized. Don’t get me wrong. I love my kids, even the one whose life has been nothing but one dollop of pain after another. But I would never have had them had I known the cost included dealing with folks like these, many of whom couldn’t manage to properly care for a dog, never mind a human.
The outrageous cost of rearing a child today, and particularly a child with medical problems, means that the benefits have got to be extreme to overcome the costs such that having a child is worthwhile. Yet from what I can tell, all you get, even if the child survives until adulthood, is another surly teenager taught by the society in which he is reared, and in large measure for whom he is reared, contempt for the people who did the rearing. How, exactly, this is a benefit justifying the inordinate cost is beyond me.
With fewer and fewer children, it would seem there would be less and less need for the state-sanctioned professionals who care for them. That would be wrong. The legions of healthcare and education and social welfare resources devoted to children will only keep ballooning as an ever larger cohort of adults relies upon an ever shrinking cohort of children to provide for them. In China, they have a short-hand explanation for what things are like there (after three decades of their “one-child” policy) and will soon enough obtain here. The children in China are known as “Little Emperors”.
There is another, more general, medical care delivery issue implicated with nephrologist’s question. Isn’t it pretty much a given that pushing responsibility to the lowest level of organization is always the most effective and efficient means of organizing things? Shouldn’t that good doctor, and all doctors everywhere, were they really concerned foremost with their patient’s health, want for the patient to “own” their bodies, and treat on their own initiative illnesses and diseases as they arise, so far as they are able? Excepting that it generates more money for the health care industry when people won’t do for themselves, shouldn’t that be what is encouraged?
It is people who don’t take responsibility for their own health that will bankrupt the health care system. Take, for example, Type Two Diabetes, the complications of which I bet the good pediatric nephrologist has treated many times over, although at one time in the not-distant past it was quite rare that children ever developed the disease. If all it takes for a particular person to control their Type Two Diabetes is exercise and eating right, also thereby relieving stress on the heart and kidneys, shouldn’t a nephrologist exalt in their patients who to take on the responsibility, and start watching their weight and getting some exercise? Would they expect a patient who suffers from Type Two diabetes to consult them every time they skip a Twinkie or go on a walk? See how utterly ridiculous it is to imagine that anyone but the patient be ultimately responsible for his care? It’s his body for heaven’s sake! He has a vested interest in the outcome.
Alas, the pediatric nephrologist probably doesn’t often see people like me. We’ve become a nation of carbohydrate addicts who expect to be constantly entertained while we sit on our fat asses doing nothing for ourselves or for our bodies. It’s all bread and circuses, all the time. How discombobulating it must have been for him to have a patient (or in our case, his caregiver) show up who doesn’t see doctors as demigods capable of easily delivering physical nirvana through a pill or an injection, to stumble across someone who actually cares enough to get smart and proactive and assume responsibility for their health. We’re all supposed to mindlessly idle our time away while the health care system provides us easy health solutions so our flesh can capably support enjoyment of the smorgasbord of mindless entertainments that making life so worth the living.
“Who do you think is responsible for your child’s care?”
It is a question pregnant with implications for societal demise and dissolution.