undiagnosed
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Listen to the patient—they are telling you the diagnosis. I first heard these words, apocryphally attributed to Sir William Osler, from the white-haired senior physician at Harvard who greeted us on our first day of medical school in 1956. For the last 50-plus years, I have taught this as a guiding precept to medical students and residents. “Listen, you learn from what patients tell you, both spoken and unspoken.” I still teach that to the fellows at Temple Medical School and the medical students at Drexel. I am 80 and a retired infectious diseases physician. I've always thought of myself as a caring, compassionate, and warm doctor. I thought I knew what patients were feeling, but it has taken being a physician with a life-threatening illness to understand what it is really like to be a patient.
Two and a half years ago, my new primary care doctor told me, “You have a 7-centimeter mass in the left kidney.” My wife and I had just returned from a vacation in Spain. I had microscopic hematuria, but I had put off the ultrasound until we got back. I had not expected these results. “I am a physician—I should be immune to this.” Denial is a common defense mechanism when shocking news like this hits a patient. There was little doubt in my mind that the 7-centimeter mass was cancer.
Self-recrimination and anger at my previous doctors arose. There'd been 5 to 10 red blood cells in my urine for at least 5 years—why no ultrasound before now? Was it too easy to believe, as did my doctors and I, that the red blood cells came from my enlarged prostate? Over time, the anger at all of my doctors who ignored (or wrote off) this abnormal test result dissipated as I realized I was equally complicit (as a knowledgeable physician) in not wanting to pursue further testing. Lesson One: Wishful thinking is not reality.
The first phase was diagnosis. Things moved quickly; I scheduled an appointment with the head of urology. He was middle-aged—I felt old. He was calm and reassuring. “Kidney cancers are slow-growing tumors,” he explained. The urologist scheduled an MRI and said, “You know, this is not an oh-my-God moment.” I thought then of how often as a physician I had minimized my patients' fears with such facile reassurances.
The MRI showed spread to the ipsilateral adrenal gland. The second phase was treatment for cure. Surgery followed quickly to remove my kidney and adrenal gland. After about 6 months, I began to feel better and had my first follow-up MRI and chest radiograph. Both were clear. My wife and I were elated and started making plans to travel until the radiologist looked more carefully and saw a small shadow on the MRI just above the diaphragm. A subsequent CT scan dashed our optimism when the urologist called to tell us, without preamble, “You have 15 metastases in both lungs.” Lesson Two: Telling a patient the truth is important, but there are ways to soften the blow of bad news without minimizing it. However, in my experience, there is no way to tell it without inflicting some pain on the patient.
I soon met my role model for a caring and competent clinician. The head of solid tumor oncology was thoughtful, reassuring, and kind to my wife and me. He looked us both in the eye, listened to us carefully, and answered our questions. The kindness that he did not hesitate to show was welcome and makes all the difference to a patient. He told us that five chemotherapeutic agents were available to me; 5 years ago there was only one, which was very toxic. He said, “I favor Votrient: It has been effective and has fewer side effects.” I appreciated his stating his clear preference for a therapeutic agent rather than cataloging them and asking me to decide. Like most patients, I knew very little about this area and could not have made an informed choice among all the therapeutic options. I was grateful to have a plan for treatment and to move forward. I also appreciated the importance and impact of clear and effective communication in a warm dialogue. We now entered the phase of treatment without potential for cure. It was not easy. I had diarrhea and vomiting for 5 days, lost 10 pounds, and soiled myself. I felt ashamed and humiliated and scared of what was happening. Because I couldn't reach the doctor, I called the oncology nurse who told me to stop the chemotherapy, rehydrate, and go on the BRAT (bananas, rice, applesauce, and tea) diet. “It will get better,” she said.
“What about my taste? Everything is metallic.”
“Maybe it will reverse, but that is less likely.”
Now I understand what my patients who took antibiotics and got taste perversion were complaining about. It had been all too easy for me to say, “But this drug is saving your life,” with the unspoken, “Stop whining.” Lesson Three: Side effects are only minor if they are not happening to you. As a physician, don't minimize patients' discomfort.
When nothing is working and you feel miserable, desperation sets in and you will try anything for relief. I used to grow impatient with patients who wanted me to do something else when I was doing all I knew possible. But so much else was possible, even if unproven. I began to understand the lure of alternative and holistic medicine. My subsequent experiences with acupuncture and herbal medicine have taught me their value. They also offer hope, a quality that patients need to cling to if they are to survive. Lesson Four: Don't dismiss alternative therapies just because you don't know much about them. Even if some of the benefit is placebo effect, the patient is happy that something is working.
I now see that the medical system is layered to shield the doctor from direct contact with the patient (except at appointment time). I had considered myself accessible to patients; I returned telephone calls as soon as I could, but they weren't my highest priority. Triage demanded that life-threatening infections be handled first.
A patient's burning anxiety over a “less severe issue” could wait. I am now a patient, and I have learned to rely on the oncology nurses; however, it is still galling that I cannot easily reach the doctor when I am scared or anxious or just want to hear his voice. If I, as a fellow physician, can't easily get through the secretaries and nurses whom we, as doctors, have interposed, what happens to most patients who can't “work the system”? They are left with their anxieties.
“Scan anxiety” is real. For the week preceding the scan, my wife and I traded our anxieties even as we tried to mask them. I was in constant fear of new lesions or that old ones would have enlarged, that this would be the beginning of the end. We don't get the results until the day after the scan. Until the oncologist says, “The scan is unchanged,” I am in full fight-or-flight mode, and I barely sleep. What were my patients' feelings, lacking medical knowledge and perspective? I have come to respect and understand scan anxiety now in a way I did not previously. It is a dread that is common to all patients with cancer who are followed with scans. I am not sure there is any way to minimize it.
I once told one of my many physicians, “I hate being a patient—it is a loss of control for me.” The paternalism that I grew up with in medicine in the 80s and early 90s has ostensibly diminished, but partnership with the patient is never totally realistic when one partner (the patient) lacks information, expertise, and experience. Even as an experienced physician, I know I need to rely on the oncologist's skill to make an intelligent decision. I have learned how anxious this inequality in our relationship makes me feel; it has taught me to empathize more with all patients. Despite my tremendous advantages of knowledge and experience compared with most patients, I still find myself overwhelmed at times. My oncologist's ability to deal with my issues in communications that are clear, tactful, considerate, helpful, and realistic in a free and warm dialogue helps immensely but doesn't completely mitigate the sense of giving up the control I once had as a physician.
I am a better doctor and human being as a result of enduring this illness—I just wish there had been an easier way to get to that place.
Carl Norden, MD
Drexel School of Medicine
Philadelphia, Pennsylvania
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