Life Stories and Patient Care

We know that I, you, and everyone else on our humble planet has a past, which for our purposes can be thought of as the sum total of an individual’s experiences and changes, or more simply as their “life story.” We also know that life stories come in all shapes and sizes. Some are sad, others are happy; some are short, others are long; some are dull, others are exciting. But whatever the central features of an individual’s life story––the beginning, the characters, the main events, the disappointments, the trials, the sacrifices, the triumphs, and all of the other things one can find in this “wild and precious life” of ours––everybody has their own life story just as much as the next guy or girl does. Of course, we end up forgetting most of our life stories, and some of us are, for whatever reason, staunchly reticent about them; but neither of these observations entails that some of us don’t have a life story. What is more, we are constantly adding material to our life stories, and I would argue that in each of our life stories lies, however deeply buried, an explanation for how we came to be the sort of people we now are.

While working with patients at UTMB’s free medical clinic in Galveston (St. Vincent’s), I have benefited greatly from keeping this last point at the forefront of my mind. A medical student like me does not need much clinical experience to learn that there are some very ill people out there. It seems that medical workers and students should feel no temptation whatsoever to blame some of these individuals for their illness; the child with an inborn error of metabolism, for example, or the adult who lost an arm in a freak workplace accident many years ago. In these cases we may rail against the injustice of the world, but we have no business holding the patient accountable for their poor or otherwise suboptimal health. Yet with other patients such a temptation may naturally be felt. It is only a temptation, to be sure, but one that can, I am told, culminate in inappropriate chastisement of the patient by a health professional, particularly one of the patient’s doctors. I am thinking of patients with chronic and, oftentimes, fatal conditions that almost certainly could have been circumvented had the patient made a few minor adjustments to their lifestyle, adjustments that were well within the patient’s financial and social capabilities. In fact, I was moved to ponder the relationship between life stories and patient care when I started working with patients at St. Vincent’s who had so many chronic medical issues––think primarily of hypertension, diabetes, and obesity––that my student partner and I would, while interviewing them, need nearly an hour to field all of their comments, questions, and concerns.

I am not speaking from a moral high ground here. If you’ve seen me in the past year you may have noticed that I walk with a slight limp. Why? “Because limping is all the rage” is an answer I would love to give, but one that I clearly cannot, at least not while keeping a straight face. Nor is it because I have some mild or severe congenital disease that targets my joints. It’s because I failed to take proper care of myself when younger.

Grab some popcorn; it’s story time. About eight years ago my right knee blew up after a routine high school tennis practice. Seriously, it blew up. I could tell from the pain and inability to walk normally that something was very wrong, but when the swelling died down enough for me to feel a large (about the size of five stacked quarters), mobile ball of tissue in the joint, I knew that something was very, very wrong.

And indeed there was: the ensuing MRI showed a crater in the lateral condyle of my right femur. It was like a tiny meteorite had crashed straight into the joint, kicking the bone and cartilage that used to reside there right out of its home. Just a few decades ago this would have spelled not just the end of my athletic career, but also of anything even resembling athletic activity. Running? Nope. Tennis? Don’t even think about it. Slow hiking? Not with a gaping hole in your knee. Maybe swimming, maybe biking, but not much besides. Not even walking.

Yet I was fortunate to have a talented surgeon who knew how to perform a nifty procedure called the “osteochondral autograft transfer system,” or OATS procedure. The basic idea is that the surgeon takes a piece of healthy bone and cartilage from a non-weight bearing part of the injured joint and moves it to the damaged area. In my case, however, an allograft––a piece of healthy bone and cartilage from a cadaver––was used instead of an autograft.

The net result of the OATS procedure? After about a year of grueling but rewarding recovery, I had a strong, pain-free, fully functional right knee. Modern medicine is amazing, is it not? True, I was now approximately 0.033% zombie by mass, but thankfully I have yet to develop an appetite for brains.

But, as with most events that are almost too good to be true, there was a catch. After the procedure my surgeon strongly encouraged me to henceforth avoid high-impact activities, particularly running and tennis. To say that I did not want to hear this would be a gross understatement. Running and tennis––what else was the point of living if not to partake of these most sublime of sports? The question haunted me during my recovery. Another one would soon join the first: Was I going to return to athletics (i.e., tennis and running) and pay the consequences, or give up athletics and enjoy a pain-free knee?

There’s much more to the story after the end of my recovery, but it will suffice to say that I ended up going with Option A, and––surprise, surprise––I have already started to pay the consequences, a slight limp being just one of them. Shame on my younger self. No––shame on me.

The upshot of this story is that I am now a patient with a chronic condition––knee pain––that could have easily been prevented had I heeded my doctor’s injunctions. So, no, I am not speaking from a moral high ground when I claim that medical workers and students may feel a temptation to blame patients who are similar to me in this regard. I stand on the very same ground on which the patients I have in mind do.

Anyhow, if medical workers and students are attentive to the relationship between the patient and their life story, I believe the temptation felt by them to blame such patients can always or almost always be overcome. Why? Because as we hear a perennially noncompliant patient’s story, we will diligently search their past for an explanation of their ill-advised behavior, an explanation that may lie far below the surface and thus need much digging before it can be brought to the surface. In my case, the explanation was that it was well-nigh impossible, psychologically speaking, for me to altogether abandon the athletic field following the explosion of my knee when, for as long as I could remember, athletics had given my life meaning and value. Eat, sleep, compete. This was my life. Remove one, I thought, and I may as well be dead.

While such an explanation will not totally absolve me of responsibility for my poor decision to resume athletics after the OATS procedure, it does reveal that I did not act out of pure irrationality, or that I suffered from some egregious form of intellectual myopia. Though it was not a very good one, I had a reason to act as I did.

My suspicion is that the same could be said of many poor decisions made by other patients with chronic conditions that the patient could’ve easily prevented, had they made wiser decisions: though in many cases they were not very good ones, the patients had reasons to act as they did. Some patients are no doubt responsible for living off of junk food and refusing to exercise; some are too undisciplined to bring themselves to consistently take their prescribed medications; some just don’t care enough about their health to see a doctor until they are on the verge of dying. But in all three cases––and in any others we can think of or have encountered in the clinic––it by no means follows that the patients in question deserve the censure of their health professionals, or that their health professionals should even be tempted to censure the patients. All of the patients have their life stories, and upon hearing them it can sometimes become evident why they have acted as they have. This realization, reasonable in theory and arguably confirmable on a case-by-case basis in practice, should, I believe, incline medical workers and students alike to treat apparently negligent patients with more care and respect than they would have otherwise. Except in a few unusual circumstances, they presumably ought not condone the negligence of their patients––it is, in my opinion, best to not promote the suffering of patients in this manner, given that suffering is an intrinsically bad thing––but neither should they berate their patients and refuse to treat them. It appears that a middle way––one lined by mercy, understanding, and compassion––is best.

But that’s just my take on the treatment of apparently negligent patients. It’s rather platitudinous, I know, and much more can be said about the proper response present and future health professionals should make to such patients in the clinic. Yet it is always useful––it is for me, at least––to be reminded that everyone, and thus every patient, has their own story.

-David

bayless

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