The stories in Silence Kills might appear to be about medicine. My sense when I was done reading them was that they were really about life, about the very human urge to extend life and relieve suffering, and about how easily in trying to make things better we can make things worse.
I have practiced medicine just long enough to see nearly every trend of the previous decade contradicted in the next one. It is humbling to look back at what we once espoused, and yet our pronouncements of today are just as dogmatic as when we thought lobotomy was the cure for schizophrenia (it isn’t), that triglycerides don’t matter (they do), or that peptic ulcers can’t be infectious (many are caused by Helicobacter pylori). I came of age in medicine in the 1980s, which I think of as the grand age of cure; those of us in training were caught up in the conceit of cure. It seemed there was little that we could not tackle or wrestle down with modern medicine, and when we failed we were never to blame. Blame the poor condition of the patient’s protoplasm, or the fact the patient came too late. We had chemotherapy to kill off any cancer; it was unfortunate the patient could not withstand the dose. Out of that conceit, I specialized in infectious diseases, which seemed to me to be the one subspecialty in medicine that was all about cure: make an astute diagnosis, and a traveler returned from the Congo with a bizarre rash rises like Lazarus. What could be more rewarding?
Then came our lesson in humility, and it was called HIV. My generation of infectious disease physicians, caught up in the conceit of cure, was now dealing with a fatal disease for which we had nothing to offer, certainly no cure. We found out, almost by accident, that even when we had no cure to offer, if we were willing to leave our medical-industrial complexes, if we were willing to visit patients in their homes, get to know their families, we were paradoxically bringing about a kind of healing in the absence of a cure. By healing, I mean that all of us—patient, family, and physician—came to terms with the disease and with mortality, not just that of the patient, but our own. It was the kind of communication and connection with patient and family, the kind of focus on the individual (as opposed to the disease in the individual) that allowed the horse-and-buggy doctor of many years ago to be such a powerful and respected figure; it was the kind of communication that in a technological age we had lost sight of, or thought was not important.
The ascendance of technology in the last two decades is mindboggling. I have stood with radiologists in front of their banks of monitors and watched them “reconstruct” a three-dimensional view of a liver before my eyes in order to see a spot that concerns me. Then, with a click of the mouse, the radiologist shows me the blood supply to the liver—arteries in vivid red—even turning the liver this way and that as if it were a piece of clay mounted on a wheel. The striking thing is that my presence in the same room as the radiologist has become unusual. In our wired world, I can pull up the X-ray image (albeit a simpler version) and the radiologist’s report at my desk, or even at home.Yet, it was all those times we traipsed down to Radiology after rounds to look at our patients’ films, all those times that we lassoed a passing radiologist to give us an opinion, to ask questions, to learn, to be educated, that have left me with some skill in looking at such images. How sad that the next generation will not get that kind of informal learning, and may not get to form a personal relationship with a colleague in radiology. My radiologist friends, who might have grudged the disruption of our visits, now bemoan the fact that they rarely see us. They miss hearing the stories of the people whose shadows they study; they have to be content with the cryptic “chest X-ray, rule out pneumonia” on our electronic requisition. From a “systems” point of view this is most efficient; from a clinician’s viewpoint and from the point of view of a hospital’s esprit de corps, which is built on relationships, it is a loss.
A parallel phenomenon is the near extinction of “bedside rounds,” that hallowed tradition of teaching hospitals. Rounds are now too often conducted in a conference room with nary a patient to be seen. I have come under fire for saying that I think the patient in the bed has become a mere icon for the real patient who is in the computer. But it is true. Interns and residents quickly find that the ebb and flow of a patient’s short hospital stay (so short it borders on illogical) revolves around getting tests requested, getting results back, requesting consults, getting the opinions back, and scheduling procedures. The workspace for this activity is not the nurses’ station and the chart rack (once a great place to meet and discuss patients with nurses and other physicians), and it’s not the bedside of the patient. The “work” takes place in the electronic medical record accessed from the “desktop” of a computer in a nook somewhere. The echocardiograms and CT scans and endoscopy images of the patient’s innards, the numbers that describe the blood and organ functions, and ergo, the real patient, is in the computer, visible to you with password and screen. The breathing, talking, anxious person in the bed, who wonders why the doctors appear so busy and yet so rarely come by, is an abstract entity.
Patients grudgingly admire and seek the incredible things medicine has to offer—indeed, they are conditioned to expect miracles—but they are wary because there is a price to pay (and let’s not talk about monetary costs here). The price of cutting-edge technology is the sense you have that your medical care feels impersonal, distant, with no one person truly in control. Your doctor, who has cared for you for years, admits you to a hospitalist when you need to be admitted. (Hospitalists are in-house and familiar with hospital systems and with acute, in-hospital care, and so this is not a bad trend—better, one could argue, than having your doctor whip by for a few minutes at the start or the tail end of a busy office day. Even if it is better, however, the fact is that you miss your doctor’s familiar face, you miss the person who is supposed to know the most about your body.) Medical care has become so specialized, you are very likely to see many other new faces, new specialists in the hospital. You might feel you are being pieced out: your heart to the non-invasive cardiologist, who might call in the invasive cardiologist if you need a cardiac catheterization, who, if you need angioplasty or a stent, gets the interventional cardiologist, who, if the root problem is a bad heart rhythm, calls in the cardiac electrophysiologist.
So much can go wrong even in the best hands when such complex care is being delivered. When the Institute of Medicine, under Dr. Kenneth Shine’s visionary leadership, released its 1999 report To Err Is Human: Building A Safer Health System, we physicians were more surprised than the public. We were aware of our screwups, but in our conceit we assumed (or we hoped) that overall they were minor in comparison to the good we did, the lives we saved. The now-infamous statistic in the IOM report was that the number of people who die from medical errors each day was the equivalent of a jumbo jet full of people crashing. It is an unforgettable metaphor, but it both understates and overstates the problem. It does not cover the little instances of neglect, minor for the system but huge for the patient and family—for example, a patient kept without food for an early morning procedure who finds out only in the late afternoon that the procedure is postponed to the next day. The jumbo jet metaphor overstates the problem in that it presupposes that medicine is delivered by something other than fallible humans. In addition, sometimes we waste billions on futile but expensive care in the last days of a life, because we are unable as a society to ration resources and unwilling to call it quits. At one level, then, we make more medical mistakes because we simply do more medically than we should, and we do it to people who have little chance of recovery and a good chance of getting worse from our efforts.
Much has changed in the light of the Institute of Medicine report. The electronic medical record saves lives and saves us from many mistakes, but it also means your doctor is half-turned away from you at your visit, busy typing, and so misses the consternation on your face, misses your body language of annoyance, because the courtesies you expect even of your third grader (“Look at me when I talk to you”) are not in evidence.
Though I am board-certified in two subspecialties in internal medicine, increasingly I see my role for my patients in this era of complex care as that of a new kind of specialist: the quarterback. Often I admit patients even though their problem is not in my discipline, because it is the quickest way to expedite the handoff to a star specialist or to get them a procedure they need. I must daily survey the field and weigh the evolving knowledge of what ails the patient against my personal knowledge of the professional expertise in my community; I must huddle with the family and interpret and weave a complete story out of the little fragments and snippets they receive from the myriad of professionals who come and go from the room; I must call the next play and give my reasons. The consultants up in the booth give me their recommendations, often grounded in science, in “evidence-based” medicine; I must weigh that against the other evidence I smell and see on the ground, evidence that revolves around such ephemeral things as a quaver in the voice, an expression in the face of someone I have come to know over many visits, a knowledge of the toll of this hospitalization on the pocketbook, on the family future; I take old-fashioned soundings such as the state of the pulse, the coating of the tongue, the cogency of thoughts and words, the turgor of the skin, the feel of the belly, the nature of tendon reflexes and the gait. I am often wrong by the measures of science, and I risk the wrath of the consultant who will be justifiably annoyed that I am second-guessing in an area that is not my area of expertise; but wrong or right, I am responsible. There are times to go for broke, the Hail Mary pass. There are times to concede that there is no cure, and to work on the healing; there are times to take a knee and settle for what we have rather than go for perfection; often it is a draw, and we hope we can regroup and prevail in overtime.
Reading these essays—the experiences they recount, the painful realizations and the illness, suffering, and frustrations they describe— is to hear a cry for a return to a simpler, more personal kind of medical care. Talk to me! These essays strive to break the silence, to ask the questions that should be asked, that should have been asked. They illustrate how easily pride, misunderstanding, laziness, denial, poor data-gathering, avarice, expediency, selfishness and, above all, poor communication can undo the best of technology, the best that medicine has to offer.
Sometimes I think we in medicine are guilty of thinking that medicine is now all science, and that the “art” was just for the old days. Sometimes I think we inadvertently convey this message to our students. But this collection proves otherwise; the practice of medicine today needs science and art, each in equal measure. The “art” in medicine lies in our willingness to recognize that it is an art. The art requires well-trained people to listen, hear, think, and walk in the shoes of the patient, if for no other reason than that one day we will all walk in those shoes.