The following exchange took place after the publication of Sherwin B. Nuland’s review of Atul Gawande’s Complications: A Surgeon’s Notes on an Imperfect Science [NYR, July 18].
Dear Dr. Nuland:
How can a patient’s family advocate for clinical watchfulness? I battled to secure the attention of well-trained physicians in major medical centers for my husband, who had many medical problems even before he broke his neck and became a par-tial quadriplegic. In six years I found one physician, a brilliant cardiologist, who was truly engaged, capable, and interested in my husband’s long and complex medical history.
At my husband’s morbidity and mortality conference I assume that doctors discussed how the patient had gone to the emergency room with breathing difficulties. The renal doctors didn’t respond to the need to provide dialysis to relieve his fluid overload. As an alternative treatment, the ER physicians chose to administer intravenous drugs, but a groin central access was botched. My husband was accepted into the outpatient dialysis unit where his unstable condition was apparently unassessed, ignored, untended by the renal staff. At the end of the day, an ICU resident called in a vascular team who performed surgery to reestablish blood flow to his leg. My husband’s fragile health was destroyed. He died eleven days later.
Your review emphasized that medicine is becoming more complex because of increasingly sophisticated diagnostic and therapeutic choices. I suggest that patients are presenting themselves to physicians with ever more confusing combinations of diseases. The medical system is unprepared for chronically ill individuals to live long enough to suffer the diseases of age, much less the consequences of trauma.
My husband was fifty-eight years old, remarkably active in spite of his ankylosing spondylitis, rheumatoid arthritis, diabetes, and atrial fibrulation, when a stumble on the carpet at work resulted in an incomplete C 5–6 spinal injury. After six months his health began a rapid decline as he was diagnosed with spinal meningitis and treated with many series of IV antibiotics. After a brief hospitalization eighteen months after his accident, he was discharged with a feeding tube and oxygen. We were told that his condition had nothing to do with his spinal cord injury. The physicians asserted that his anorexia was a result of depression—a perfectly understandable consequence of his devastating loss of capabilities.
I knew my husband was very sick and I knew it wasn’t depression. I was shocked into taking control of my husband’s needs and took him to the trauma surgeon who had saved his life. The surgeon worked with an infectious disease doctor to identify the site of a possible infection. Several months later the surgeon removed the neck stabilization plate and an abscess, a pocket of infection that required the use of IV amphotericin.
I raged that physicians could have overlooked such an intuitively obvious possibility; that they hadn’t consulted a surgeon who was only a few miles distant. I blamed myself for not seeking out additional opinions as my husband’s health declined. I knew that his doctors had not been insightful, engaged. I knew I had to find physicians who were, to use your term, watchful.
This was extraordinarily difficult. As I transferred my husband’s care to a university teaching hospital, secondary issues added to the complexity—an incorrect diagnosis of tuberculosis that required massive doses of medicine that made eating difficult, a hip dislocated in an early therapy session that compromised his physical recovery, a bladder overflow that caused his renal function to plummet, GI bleeds, continual deterioration of his ability to vocalize, treatment-resistant skin conditions, etc., etc.
The eyes of specialists glazed over at the retelling of crises, each one explainable, but unexpected. Some specialists were kind, recommending therapies within their area of expertise, assuring us that the condition would be monitored, that my husband’s physicians were aware and would take action.
Talented specialists were not in the position to accept responsibility for my husband’s care; they were consultants. I projected a great pretense in their confidence that “somebody” was paying attention, that “somebody” would know when to intervene. But, knowing that doctors don’t like difficult patients and are even less tolerant of demanding spouses, I assiduously attempted an appearance of objectivity, of proactive involvement. I accurately documented medications and therapy regimens. I organized records of my husband’s vital signs, his blood sugars, the observations of his home caregivers. I brought lists of questions to appointments. My husband was a compliant patient.
I accepted the humanity of physicians; I trusted very few. I insisted on attention, a best effort. My husband’s mind was so compromised by his illness that he maintained a childlike confidence in his doctors. I protected my husband from my fulminations that were as anxiety-producing in him as physicians’ cavalier attitudes toward my husband were to me.
My husband came under the care of the hospital’s renal clinic when kidney failure became his most life-threatening medical condition. Renal clinic policy forbade a patient becoming the responsibility of one nephrologist. Renal disease was apparently considered to be predictable; its course inevitable. Patients and doctors were fungibles.
This was a disaster for my husband. Every attending physician could not become familiar with his uniquely complex needs; each physician remembered only a portion of his history. On ever-changing rotations, residents were taught the characteristic symptoms, the predictable diagnoses, the standard treatments. Even the etiology of amphotericin toxicity was vehemently disputed by these nephrologists; my husband’s renal disease was considered to be a result of his diabetes, in spite of his history and a kidney biopsy.
I found the renal physicians to be clinically robotic. Attending nephrologists, inured to the slow progress toward death of their ESRD patients, indoctrinated residents to this harsh reality. During a hospital stay, an attractive, fresh-faced resident cheerfully explained to me that they were late in their rounds that day, “because patients were dropping like flies.”
I believe renal staff are as culpable for the manner of my husband’s death as is the inexperienced emergency room physician. If the nephrologists had been clinically watchful my husband would never have been in the emergency room. When he did seek emergency treatment, renal physicians should have provided dialysis. When they accepted him into their unit, renal physicians should have attended to his deteriorating condition.
What can I do to make something good result from the tragic manner of my husband’s death?
San Diego, California
Sherwin B. Nuland replies:
Your letter describes not only your husband’s tragedy and your own, but ultimately the tragedy of all American medicine and the hundreds of thousands of patients who have been harmed by it. Perhaps I should begin what will be an overly long response by telling you an anecdote a colleague recounted to me some years ago. He visited a great professor of medicine of the old school, to describe to him his own very complex medical condition that was being inadequately treated by a series of super-specialists, each of them enormously skilled in his own field but unable to grasp the totality of his illness. The wise professor listened very carefully and finally said, “You know what you need, don’t you? You need a doctor.” By which he meant: “You need a healer—a single physician whose perspective embraces you as an entire human being.”
And that, of course, is the essential truth of medicine as it is practiced in our finest hospitals and even in hospitals not so fine. We have trained a generation—no, the last two or three generations—of highly skilled physicians who are inadequate healers. Unable to think of patients as entire human beings, they focus on their own aspects of the problem, and by so much neglect of the complexities of a patient’s life—not to say his medical condition—they make grievous errors. Among the grievous errors are those that occur in the treatment of people who have enlarging multiplicities of problems. There occurs what I can only call “clinical frustration” in the mind of the specialist. This means that he or she begins to feel such futility in the face of the enormity of issues raised by a particular set of illnesses in one individual that the temptation to turn away is almost as large as the temptation to think of this particular patient as beyond the ability of medicine to help.
I think these are the primary issues that you were dealing with during your husband’s difficult illness, and in the increasingly complicated set of circumstances that allowed his physicians to rationalize their way out of giving him the specificity of care that his many problems demanded. Of course, this is a perfectly normal human tendency, but that is hardly an excuse for a physician. Physicians are not morally or ethically excused by the fact that they face these horrendous situations—they are expected to persevere in spite of the mountain of obstacles placed in their path.
I wish I could say that your letter has informed me of circumstances and events that are new or surprising. Unfortunately, I have witnessed such sequences on far more than one occasion, and I must confess to having been involved in a few of them myself. When the expected poor outcome occurs, we have all kinds of ways, we doctors do, of rationalizing it to ourselves. Ironically, morality and morbidity conferences support our tendency to excuse ourselves for looking the other way. At such meetings, various commentators are certain to bring up what in the confines of a conference room would appear to be the perfect apology, namely, that “the patient’s disease was the culprit” (this is actually a category in which errors are classified, getting the doctor off the hook) and that there were inevitabilities in this situation.
Your closing question, expressed so poignantly, is a very difficult one to answer. I think of a comment I have heard made by David Rothman, one of America’s foremost medical sociologists. At a conference memorializing the twenty-fifth anniversary of the Karen Ann Quinlan case in which we both participated, Rothman pointed out that great changes in the delivery and practice of health care do not come from within the profession but from outside. He was referring to the right-to-die movement, but he might as well have been talking about other changes that have occurred, the many byproducts of the women’s movement among them. As a result of advocacy groups the treatment of breast cancer has markedly changed, after approximately a decade of sometimes violent resistance by surgeons. There are other ways in which the power of advocacy groups has expressed itself, and where their importance has been manifest.
I am recommending a bold approach. To my knowledge, there has never been an advocacy group of families and patients who have been let down by the medical system. I sense in your letter not only your extraordinary devotion to your husband, but also a commitment to see that things get better, as well as the articulate voice to be involved in ways that can make it happen. I leave you, accordingly, with a suggestion that may seem vague, painted with too broad a brush, and ultimately much less helpful than you would like. It is possible that you and others whom you may know (who have been treated this way by the system) could spearhead the formation of a vocal advocacy group whose essential function it would be to point out the necessity not only of individual responsibility by super-specialists but of something much more significant, I believe. This is the resurrection of the importance within the medical hierarchy of the primary physician, the single person who guides the entire spectrum of care. I have felt (and argued for it, in my book How We Die) that specialists are too overwhelmed by what I call “The Riddle” of disease to appreciate the totality of any human being’s medical care. At present, the least authoritative member of the team in any good hospital is likely to be the one person who is able to have the widest perspective on care, and to oversee the entire process.
We need changes in the system, but they will not occur, as David Rothman has pointed out, unless there is a loud public outcry. Please be assured that you will have much support within the medical community itself, although at present it may not seem that way. I would encourage you to think about these matters. I hope it will be possible for you, in the midst of the tragedy you have experienced, to overcome it by accomplishing a mission that should have been carried out at the very beginnings of the decades of biomedicine. You should do it for yourself, you should do it for the memory of your husband, you should do it for countless patients yet to come, but you should perhaps think also of doing it to save the profession of medicine from itself.