Grief Connects Us

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Grief Connects Us Page 4

by Joseph D. Stern


  The most recent innovation introduced to the operating room involves the use of robots to place spinal hardware. I can only imagine what will come next. As surgeons, we evaluate the technologies and master them on cadavers before incorporating them into our practices, always trying to balance the goals of increasing safety, improving outcomes, and decreasing risk. While trying these new techniques, there is always the potential of increased risk to the patient, particularly in the early stages of adoption.

  Through the process of training, you change, taking on greater and greater responsibilities. You reach a level of familiarity and confidence with the details of your specialty so that complex tasks become routine. Yet no matter how routine the work becomes, you still bear the weight of responsibility for patients and the sacred trust they place in you to bring them through illnesses or surgeries without complications or disability.

  One of the most sobering transitions in my career came when I finished my residency program and took on the role of attending physician. No longer was I reporting to a chief resident or a professor. I had become directly responsible to my patients. With this daunting privilege came an unfamiliar, almost palpable weight. As a resident, I would arrive in surgery knowing the patient’s case and our plan of treatment. We operated as a team, and even in my seventh year an experienced professor was always by my side, guiding and advising me. During my training, I did not meet with the patient or the family before the surgery. I did not counsel the patient about other options, and I rarely saw the patient again after his or her hospitalization. My duty was to learn how to operate on the person in front of me, honing my skills and learning protocols, procedures, and diseases. This helped distance me from the feelings of sadness and guilt I now experience if I cannot relieve the suffering of my patients, if I cannot cure their disease, or worse yet, if I cause them injury.

  There were many reasons why my fellow residents and I respected Dr. Hoff so much, but one of the biggest was that he was willing to have tough conversations with patients and to admit when we had failed. He was scrupulously honest and did not shirk responsibility. Now that I am practicing on my own, this is even more striking to me: Dr. Hoff accepted ownership of errors that he did not actually commit but that were those of his trainees, me included. He understood this to be an inherent part of the training process. Other attending doctors would go out of their way to avoid these uncomfortable moments with patients and their families; Dr. Hoff embraced them, seemingly without flinching, as part of his role.

  The responsibility we shoulder as surgeons can be immense. One of my colleagues once said, “No matter how many great operations we perform, we are only as good as our last surgery.” Others say, “If you aren’t having any complications, then you aren’t doing enough surgery.” Some doctors protect themselves by shunning genuine connection with their patients in the first place, but most care deeply and take very seriously the trust placed in them. It is hard to promise to care for your patient, promoting yourself as the best choice to help him or her with his or her problem and outlining the plan of treatment, and then fall short in the delivery. Many times, the failure may not be a technical error but an unanticipated bad outcome, such as an intraoperative aneurysm rupture or bleeding following a surgery. The implications may be dire and can even lead to a patient’s death. The sense of personal responsibility, and often of failure, after a bad outcome is no less when a technical error is not the underlying cause; you experience a sinking feeling, often accompanied by nausea, even when rationally you know that everything went as planned during the operation.

  I have watched new graduates enter practice and experience for the first time what it means to be “on your own” in the operating theater, making grave decisions and having to stand by them. Even when a technically demanding procedure is performed beautifully, a patient may develop an unanticipated complication. Most surgeons are devastated by such a result. They had done everything correctly, and skillfully executed the latest technique, but still the patient had done poorly. In that instance, it is hard for us to reassure ourselves with all the good results we had and not agonize over the permanent change and disability an individual patient may experience under our care. No longer was there an attending physician to carry, or at least share, the burden. It is ours alone.

  Complications occur with regularity and are unpredictable. They haunt and shape doctors. We dream about them and remember them always. Facing them and our patients is crucial. Admitting, accepting, and ultimately forgiving our failures is an essential part of becoming a healthy, mature, and effective neurosurgeon. Swathing ourselves in arrogance and dishonesty or avoidance doesn’t work. I learned by example from Dr. Hoff, but it has taken me the better part of my career to sort this out for myself. Still, one of the hardest parts of my job continues to be exposing my patients to risk and managing and accepting any suffering I may have inadvertently caused them.

  Not only is the transition from trainee to attending sobering within the context of medical errors and complications, the burden we face caring for patients with life-threatening illnesses such as cancer is eye-opening. As a resident, I was fascinated with the anatomy of brain tumors and the technical aspects of surgically removing them. Performing the surgeries and caring for the patients immediately before and after their operations was more than a full-time job, and I lacked any understanding of the longitudinal care required. Now, when I meet a person with a newly diagnosed brain tumor, I will follow my patient for the duration of his or her illness, from diagnosis to surgery, to postoperative care, to chemotherapy or radiation therapy (if necessary), through possible recurrences, and potentially to deterioration and death.

  This is an entirely different experience from that of the brash, youthful trainee participating in complicated surgeries peppered with potential risk to the patient, but without any long-term relationships with the patient and the patient’s family. Despite our intense knowledge of neurosurgical procedures, as practitioners we leave our teaching programs with little training in counseling our patients about their illnesses or in how to negotiate the decisions we need to make with them as they confront life-altering and, occasionally, life-ending illnesses. Even as we become highly competent in the operating theater, we still bear the weight of responsibility for bringing our patients through illnesses or surgeries without complications or disability.

  The problem is, no matter how good we are, complications are inevitable, often taking us by surprise. The other day, I performed a fairly routine surgery to decompress a man’s cervical spinal cord, which was under severe pressure from arthritic bones and discs; he was rapidly losing the use of his hands and the ability to walk. I performed this surgery with one of my newest partners, and together we did what we thought was a careful and meticulous job.

  My patient woke up after the surgery barely able to use his legs, with his right arm weaker than it had been before he was put under anesthesia. I have replayed the entire surgery in my head numerous times and am not sure what, if anything, I did wrong. This is scary, since I do not know what I would do differently in the future; thus, it is not clear how I would prevent the same outcome. Ultimately, this is one of the greatest burdens of being a neurosurgeon: the sometimes unforeseeable and inexplicable bad results and grave complications, along with the awareness that these complications can reoccur and that despite the best of intentions, preparations, and practice, they will hang across your shoulders like a great heavy coat.

  Fortunately, these cases are rare, but that does not make them any less agonizing for me or the other people involved. Over time, this particular patient will likely recover function and regain independence, but he will never be his normal self again. I know that the surgery was the right thing to do, since he was losing his motor skills, and that the situation was almost certain to worsen without treatment. But this knowledge doesn’t begin to relieve the sense of failure I feel—that all surgeons feel—when things do not go according to plan and patients are injure
d in the process.

  One of the advantages I have gained from longer-term connections with patients is the chance to witness truly remarkable recoveries, which can only be fully appreciated with the passage of time. I have cared for many young victims of car accidents who were comatose in intensive care for weeks on end, often with invasive monitors in their brains, tracheostomies and feeding tubes placed surgically, and eventually transferred for rehabilitation. I have seen them come back months later, walking on their own two feet back into my office, breathing and eating normally, scars healed, returned to their preinjury selves. This perspective is a source of inspiration and wonder. The medical teams who only observe the patients during their acute hospitalizations do not often see these stunning transformations. One of the greatest rewards for me is to be there for these moments with my patients.

  Physicians experience remarkable victories as well as devastating losses. The former are the stories that keep us going. Sometimes we are able to save people, occasionally in spectacular fashion.

  One day after a snowstorm, about five years into my practice, a trauma doctor notified me of the arrival of a “level 1 trauma,” indicative of life-threatening injuries. I rushed to the emergency room to find Paul, a teenage boy, bleeding profusely from his scalp. He had been intubated with a breathing tube and was being wheeled into the CT scanner. The scan showed an open depressed skull fracture. A large piece of the top of his skull had been driven into his brain, cutting the sagittal sinus, the head’s principal draining blood vessel. We raced Paul’s gurney up to the neurosurgical operating room and unwrapped his head. Blood was pouring out, soaking the sheets. After a rudimentary shave, I prepped his scalp with betadine and began to operate. With a scalpel, we opened the scalp laceration further, elevated the depressed bone fragments, and repaired the venous branches into the sagittal sinus. We ligated, or closed off, the sinus in front of the lacerated portion of this blood vessel with a heavy silk suture. The anesthesiologist gave the boy multiple units of blood as we performed the repair. We were eventually able to control the bleeding, and then reassembled his skull like a jigsaw puzzle with titanium plates and screws. He spent a day asleep on the ventilator in the ICU, and the next morning we allowed him to wake up.

  Paul’s parents spent a sleepless night in the ICU waiting to understand the results of their son’s injuries. We learned that this seventeen-year-old was their only child. His high school had been closed for a snow day. He had been riding on an inner tube, towed by his friend’s car across the fresh snow of a farmer’s field. The boys did not realize that the fence along the edge of the field was made of concrete posts designed to look like wood. The inner tube shot to the side in a wide arc as the car turned sharply. It gathered speed and launched Paul headlong into one of the concrete posts. His school friends called an ambulance and he was rushed to the hospital.

  After we lightened the sedation and removed his breathing tube, we were all relieved to discover that Paul was responding appropriately, indicating his brain had not been badly damaged. He healed rapidly from his physical injuries, went to rehabilitation for several weeks, and was later discharged home. Early on, he had some cognitive impairment and problems with impulsive behaviors, but eventually he made a full recovery. He ended up missing a semester of high school, but he graduated the next year. Able to attend North Carolina State University, he later became an engineer. I took him back to surgery just before he went to college and rebuilt his forehead with an acrylic resin to smooth the remaining, still-noticeable defects in his skull. He is now happily married, and a father. Paul has gone on to build a meaningful life of his own. His accident will eventually become a footnote in that life, or a story he will tell his children, rather than a defining moment, or worse, someone else’s tale of a life that ended before it had fully begun.

  An important element of our training that prepares us for our later careers occurs through immersion in neurosurgical diseases, from which we gain a sense of context that helps define our expectations and shapes our interactions with our patients. We come to see progress in patients where many others do not. Following commands in the ICU often means that patients will hold up two fingers when asked to do so. Other doctors will joke that this is “normal” only for a neurosurgeon. But, over time, a patient who has gone from a noncommunicative coma to following simple commands represents enormous progress.

  I remember, during my training, telling my wife about a young girl in the hospital with a brain tumor who was making progress each day. We struck up a friendship. I would play cards with her on her bed if I had a few spare minutes. After several weeks, I brought Kathryn in to meet the girl. My wife was shocked. Where I saw daily progress, she saw a sick child—face bloated from high-dose steroids and head shorn, a stark red incision on her scalp—who was severely affected by her cancer. My norms and expectations had been reset by daily exposure to Kaitlin’s disease, whereas for Kathryn this was an unfamiliar and frightening landscape far from her normal experiences.

  Paradoxically, as we neurosurgeons move through our careers, we gain a clearer understanding of the risks involved in our profession. New doctors push the envelope and are eager to try complex and daring procedures—embracing risk, driven by a sense of infallibility and youthful optimism. Often, they are oblivious to the vulnerabilities of a patient, likely because they do not feel vulnerable themselves. I see this in my three young adult children, and while I admire their belief that everything usually works out and that almost anything is possible, this attitude is both a virtue and a curse, particularly in the operating room. As we age, we sense greater frailty in ourselves, often tempered by the accumulation of our own losses, both personal and professional. There is growing awareness that what we do is inherently dangerous and full of risk.

  I had already been practicing in Greensboro for ten years when Dr. Hoff retired from the practice of neurosurgery, after he developed acute leukemia. He and his wife were traveling in Italy when he became ill. They flew back to Michigan. He died eight months later. In addition to being chairman of the Department of Neurosurgery at the University of Michigan for twenty-five years, he had trained over fifty neurosurgical residents who are currently in practice throughout the United States, many of whom attended his memorial service on a beautiful spring day in Ann Arbor.

  Some of his former residents conjectured afterward that his leukemia was the result of radiation exposure he’d received early in his training. Little was understood then about the long-term effects of radiation exposure. Trainees used to perform direct carotid arterial punctures without lead shielding for arteriography (now we use catheters placed in the patient’s groin or wrist, and stand behind lead-lined windows when X-ray images are being taken). These tests were done routinely to assess for brain shift; the X-rays showed displacement due to blood clots or tumors of the arteries feeding the brain prior to surgery. Now these direct arterial studies are no longer done, replaced later by CT scans and then later still by MRI (magnetic resonance imaging). At the time of Buz’s early training, however, decisions to operate were made based on these direct punctures and skull X-rays. An entire field of radiology, assessing “square shift, round shift, pineal shift” by interpreting skull films, has been supplanted by newer imaging modalities. Today, even the more sophisticated angiography methods have been largely replaced by noninvasive imaging studies as neurosurgery and its practitioners continue to adapt to new techniques and knowledge.

  The line separating me from my patients is becoming less distinct as I age. I remember my eagerness, in training, to operate on patients with rare, fascinating brain tumors. The patients were often in their fifties and sixties, which to someone in his twenties seemed a lifetime away. Many of my patients now are my age or younger. I realize that it is luck or chance that has spared me some of the fates I’ve witnessed, and I know that in time, I will become a patient myself, just as my sister did.

  CHAPTER THREE

  the patient’s perspective

&n
bsp; … Over days the IVs came out,

  And freedom came back to him—

  Walking, shaving, sitting in a chair.

  The most ordinary gestures seemed

  Cause for celebration …

  —JANE KENYON, CHRYSANTHEMUMS

  Some people come in your life as blessings.

  Some come in your life as lessons.

  —MOTHER TERESA

  With Victoria’s leukemia, I saw that I had vastly underestimated the extent of the anxiety, fear, and helplessness patients and their families experience when confronting catastrophic illness. I had always been able to maintain a certain detachment. Although invested in and connected with my patients, I kept myself sufficiently removed to be able to perform surgery on them without becoming overwhelmed. This is a difficult course to navigate in the best of circumstances, but with my sister in the hospital I found myself increasingly distracted by her plight. I was speaking with Victoria each day, discussing her situation and reviewing her blood counts with her, yet the physical distance between us felt too great. At work, I began to perceive my patients’ concerns through my sister’s eyes. Suddenly, I was much more aware of the depths of their fear and suffering. I began to doubt myself.

  An oncologist friend of mine, Gus Magrinat (interviewed in Chapter Eight), used to joke with me about the absurdity of a shrinking violet neurosurgeon. People want a confident neurosurgeon, not someone who is unsure of what he or she is doing. It takes tremendous confidence to advise a patient to have brain or spinal surgery and to advocate yourself as the surgeon. I often struggle with the expectations I place on myself, as well as with what is reasonable for patients to expect of me. Since there is no such thing as a perfect surgery (everything can always be done better), the promise of perfection is not realistic. But now the corrosive feelings of doubt were less about my abilities to perform surgery and more the result of a greater sense of empathy and identification I was feeling toward my patients. Loss of detachment can be a problem for a surgeon (this is one reason many medical students opt not to go into surgery in the first place), but some distance is necessary in order to concentrate on the technical aspects of procedures and get the patient safely through an operation.

 

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