Every Patient Tells a Story Read online

  Hsia posed the question to the team. Neither had heard of such a syndrome. So, after the team had finished seeing all the patients they were caring for, Hsia hurried to find a computer. She went to Google and entered “persistent nausea improved by hot showers.” She hit the enter key and less than a second later the screen was filled with references to a disease Hsia had never heard of: cannabinoid hyperemesis—persistent and excessive vomiting (hyperemesis) associated with chronic marijuana use (cannabinoid).

  The disorder was first described in 1996, in a case report from an Australian medical journal. Dr. J. H. Allen, a psychiatrist in Australia, described a patient admitted to his care with a diagnosis of psychogenic vomiting—vomiting due to psychological rather than physiological causes. Allen noticed that this patient’s vomiting was associated with a bizarre behavior—repetitive showering. He took a dozen showers each day. Allen also noticed that the symptoms improved over the course of his hospitalization but recurred when the patient was sent home. The patient had a long history of chronic heavy marijuana use and Allen hypothesized that the vomiting might be triggered by the marijuana.

  Over the next several years Allen noted similar patterns in other patients admitted with vomiting disorders, and in 2001 he published a paper reporting on ten patients with the disorder he named cannabinoid hyperemesis. Each patient in his series smoked marijuana daily; each had developed intermittent nausea and vomiting. All had used marijuana for years before they developed these episodic bouts of nausea and vomiting. And remarkably, nine of the ten patients reported that hot showers helped their symptoms when everything else failed. All symptoms resolved when these patients gave up marijuana. And then reappeared in three of the ten who resumed their cannabis use. Other case reports followed from around the world.

  Could this be what was plaguing Hsia’s patient? Did Maria Rogers even smoke marijuana? Hsia hurried back to the patient’s room. She found the patient sitting in bed, a towel wrapped around her still wet hair. Yes, she did smoke marijuana frequently. Maybe not every day but most days. That clinched it—at least in Hsia’s mind. The young doctor felt like cheering. She’d figured it out when even the experts had been stumped! This is really one of the great pleasures in medicine—to put the patient’s story together in a way that reveals the diagnosis.

  She excitedly explained to the patient what she’d found on the Internet—that there was a good chance that marijuana was causing her nausea. She got better in the hospital because she didn’t use it when she was here. But when she got home and resumed her regular exposure to the drug, the nausea would once again be triggered. All she had to do was to give up smoking marijuana, Hsia concluded triumphantly, and her symptoms would be cured forever.

  This story, which seemed so logical and reasonable from Hsia’s perspective, did not make the same kind of sense to the woman who was living it every day. Rogers’s response was immediate and emphatic and—to Hsia—shocking. “That is total bullshit. I don’t buy it,” the patient snapped angrily. She knew many people who used marijuana a lot more than she did and they didn’t get sick like this. How could Hsia explain that? Huh? Besides, wasn’t marijuana supposed to help people who were sick from chemotherapy? Why would it decrease nausea in that case and cause nausea in her? she demanded. Where was her proof? Where was her evidence?

  Hsia was taken aback by the patient’s anger. She thought the young woman would be thrilled by the news that simply stopping the marijuana use would cure her of this devastating illness. Why was she so angry?

  Later that morning, Hsia told the attending and resident what she’d found and how angry the patient had become when she told her about this diagnosis. It made sense to the other doctors caring for the patient. The marijuana use, the cyclic nature of the symptoms, and the restorative powers of the hot shower made it seem like a slam dunk. But how were they going to convince the patient?

  They never got the chance. Maria Rogers left the hospital the following day. When contacted several weeks later, Rogers reported that the nausea had recurred. Yes, she had resumed her usual practice of smoking marijuana most days because she still didn’t believe there was a link. She had arranged for an evaluation by a gastroenterologist at Yale. When I spoke with Ms. Rogers afterward, she told me that the doctors there had ordered many of the same tests her previous doctors had gotten. Not surprisingly, the results were no different. From Maria’s perspective, what she had was still a mystery.

  In medicine, the patient tells the story of his illness to the doctor, who reshapes the elements of that story into a medical form, into the language of medicine. The doctor will usually add to the story, incorporating bits of information gleaned through questions, from the examination of the body, from the tests that have been performed—and the result should be a story that makes sense—where all pieces ultimately add up to a single, unifying diagnosis.

  But the story of the illness can’t stop there. Once the diagnosis is made, the doctor has to once again reshape the story she has created—the story that helped her make the diagnosis—into a story she can then give back to the patient. She has to translate the story back into the language and the context of the patient’s life so that he can understand what has happened to him and then incorporate it into the larger story of his life. Only when a patient understands the disease, its causes, its treatment, its meaning, can he be expected to do what is needed to get well.

  Studies have repeatedly shown that the greater the patient’s understanding of his illness and treatment, the more likely it is that he will be able to carry out his part in the treatment. Much of this research has been done in patients who have been diagnosed with diabetes. Patients who understand their illness are far more likely to follow a doctor’s advice about how to change their diet and how to take their medications than those who do not.

  It’s understandable. Taking medications on a regular basis isn’t easy. It requires dedication on the part of the patient. Motivation. A desire to incorporate this inconvenient addition into a life that is already complicated. Greater understanding by the patient has been shown to dramatically improve adherence. This is where getting a good history—one that provides you with some insight into the patient and his feelings about his illness, his life, his treatment—can really pay off.

  To go back to the story of Maria Rogers, Hsia told me how surprised she was when the patient didn’t accept her explanation of her illness. That marijuana was linked to the nausea and vomiting seemed obvious to Dr. Hsia. It was not obvious to Ms. Rogers. Perhaps there was no way for Hsia to explain this to her that would have been acceptable. The story Hsia told to this patient was the doctor’s story—the observations and research that allowed Hsia to make the diagnosis. What she didn’t do was create the patient’s version of the story—one that would make sense in the larger context of her life.

  And then the patient left the hospital and with her their chance to figure out how to help her understand her illness. Dr. Hsia tried to stay in touch with Maria after she left the hospital, but after several months the cell phone number she gave was disconnected and a letter was returned. And so, having rejected one diagnosis and the treatment option it suggested, Maria Rogers still suffers from a malady for which she has no name and no cure.

  Stories That Heal

  One of the most important and powerful tools a doctor has lies in her ability to give a patient’s story back to the patient, in a form that will allow him to understand what his illness is and what it means. Done successfully, this gift helps the patient incorporate that knowledge into the larger story of his life. Through understanding, the patient can regain some control over his affliction. If he cannot control the disease, he can at least have some control over this response to the disease. A story that can help a patient make sense of even a devastating illness is a story that can heal.

  The primary work of a doctor is to treat pain and relieve suffering. We often speak of these two entities as if they were the same thing. Eric Cassell, a physi
cian who writes frequently about the moral dimensions of medicine, argues, in a now classic paper, that pain and suffering are very different. Pain, according to Cassell, is an affliction of the body. Suffering is an affliction of the self. Suffering, writes Cassell, is a specific state of distress that occurs when the intactness or integrity of the person is threatened or disrupted. Thus, there are events in a life that can cause tremendous pain, and yet cause no suffering. Childbirth is perhaps the most obvious. Women often experience pain in labor but are rarely said to be suffering.

  And those who are suffering may have no pain at all. A diagnosis of terminal cancer, even in the absence of pain, may cause terrible suffering. The fears of death and uncontrollable loss of autonomy and self combined with the fear of a pain that is overwhelming can cause suffering well before the symptoms begin. There are no drugs to treat suffering. But, says Cassell, giving meaning to an illness through the creation of a story is one way in which physicians can relieve suffering.

  In the case of Maria Rogers, Dr. Hsia was able to gather the data necessary to make a diagnosis. She knew the disease the patient had. And yet she didn’t know enough about the person who had the disease. The story she gave back to the patient was a reasonable one and a rational one, but it was not one the patient could accept. And when confronted with the vehement rejection of that story and the raw emotion displayed, Hsia retreated. Before she was able to regroup and try again, the patient left her care. Rogers rejected Hsia’s story, rejected her diagnosis, and, when last I spoke with her, continued to search on her own for an end to her pain and suffering.

  And yet the right story has nearly miraculous powers of healing. A couple of years ago I got an e-mail from a patient whose remarkable recovery highlighted the difference between pain and suffering and the healing power of the story. Randy Whittier is a twenty-seven-year-old computer programmer who was in perfect health and planning to get married when suddenly he began to forget everything. It started one weekend when he and his fiancée traveled to her hometown to begin making the final arrangements for their wedding the following spring. He had difficulty concentrating and was frequently confused about where they were going and whom they were talking with. He chalked it up to fatigue—he hadn’t been sleeping well for some time—and didn’t say anything to his fiancée. But on Monday morning, when he went back to work, he realized he was in trouble and sent an instant message to his fiancée, Leslie.

  Leslie saw the flashing icon on her computer announcing that an instant message had arrived. She clicked on it eagerly.

  “Something’s wrong,” the message read.

  “What do you mean?” she shot back.

  “My memory is all f’ed up. I can’t remember anything,” he wrote. Then added: “Like I can’t tell you what we did this weekend.”

  Leslie’s heart began to race. Her fiancé had seemed distracted lately. She thought maybe he was just tired. But he’d been strangely quiet on their trip to New York this weekend. He had been excited when they set up the trip, and she’d worried that he was getting cold feet.

  “When is our wedding date?” she quizzed him. If he could remember anything, he’d be able to remember that. Planning this wedding had dominated their life for the past several months. “Can you tell me that?”

  “No.”

  “Call the doctor. Do it now. Tell them this is an emergency.”

  Over the next half hour, Randy put in three calls to his doctor’s office, but each time he had forgotten what they told him by the time he messaged his fiancée. Separated by miles of interstate and several suburbs, Leslie was frantic. Finally, at her insistence, Randy, now terrified, asked a friend to take him to the closest hospital.

  A few hours later, her cell phone rang. At last. He was being discharged, he told her. The emergency room doctor thought his memory problems were caused by Ambien, the sleeping pill he was taking. The doctor said the symptoms would probably improve if he stopped taking the medication.

  Leslie didn’t buy that for a second. “Don’t go anywhere,” she instructed him. “I’ll pick you up. I’m going to take you to your doctor.” A half hour later she found Randy wandering down the street in front of the hospital, uncertain about why he was there and even what her name was. She hustled him into the car and drove to his doctor’s office. From there they were sent to Brigham and Women’s Hospital in Boston.

  Late that night, the on-call resident phoned Dr. William Abend at home to discuss the newest admission. Abend, a sixty-one-year-old neurologist, scrolled through the patient’s electronic medical record as the resident described the case. The patient, who had no history of any previous illnesses, had come in complaining of insomnia and severe memory loss. Psych had seen him—he wasn’t crazy. His physical exam was normal except he didn’t know the date and he couldn’t recall the events of the week or even that day. The ER had ordered an MRI of his brain but it hadn’t been done yet.

  The patient needed a spinal tap, Abend instructed, to make sure this wasn’t an infection, and an EEG, an electroencephalogram, to see if he was having seizures. Both could affect memory. He’d see the patient first thing the next morning.

  Randy was alert and anxious when Abend came to see him. Tall and slender with earnest blue eyes, the young patient seemed embarrassed by all that he couldn’t remember. His fiancée had gone to get some rest, and so his mother provided the missing details. He’d first complained about some memory problems a couple of months earlier. The past weekend everything got much, much worse. He couldn’t remember anything from the past few days. He couldn’t even remember he was in the hospital. Overnight, he repeatedly pulled out his IV.

  On exam, Abend found nothing out of the ordinary save the remarkable degree of short-term memory loss. When Abend asked the patient to remember three words—automobile, tank, and jealous—the patient could repeat them but thirty seconds later he could not recall even one. “It wasn’t like—where did I put my car keys?” Abend told me. “He really couldn’t remember anything.” The neurologist knew he had to determine what was going on quickly, before further damage was done.

  Abend checked the results of the spinal tap—there were no signs of infection. Then he headed over to radiology to review the MRI. There was no evidence of a tumor, stroke, or bleeding. What the MRI revealed were areas that appeared bright white in the normally uniform gray of the temporal lobe on both sides of the brain.

  There are only a few diseases that would cause this kind of injury. Viral encephalitis—an infection of the brain that is often caused by herpes simplex—was certainly the most common. Autoimmune diseases like lupus could also cause these kinds of abnormalities. In lupus, the body’s natural defenses mistakenly attack its own cells as if they were foreign invaders. Finally, certain cancers can do this too—it’s usually lung cancer, usually in older smokers.

  The young man’s symptoms had been coming on gradually over two months. Abend thought that made an infection like herpes less likely. The patient had already been started on acyclovir—the drug usually used to treat herpes encephalitis—since the disease can be deadly when it infects the brain. Although Abend thought it unlikely, they would need to do additional tests of the spinal fluid to make sure there was no evidence of this dangerous viral infection.

  Lupus seemed even more unlikely to Abend. It is a chronic disease that can attack virtually any organ in the body and is generally characterized by joint pains and rashes. The patient had none of these symptoms. Still, perhaps this was the first sign of this complex disease. It would be unusual, but so was the young man’s extensive memory loss.

  Although cancer was an uncommon cause of this kind of injury, it seemed to Abend the most credible in this patient. Even nonsmokers can get lung cancer. And other cancers can cause the same type of brain injury. Moreover, if these symptoms were caused by a cancer, there was a good chance that they would resolve once the cancer was treated. He ordered a CT of the chest, abdomen, and pelvis. Ordering all of these scans communicates un
certainty about what you are looking for and where it might be located, but Abend felt strongly that they didn’t have time to be wrong.

  Results from the tests trickled in over the next few days. He wasn’t having seizures. It wasn’t a virus. He didn’t have lupus. But by the time those test results arrived they already had an answer. The CT of Randy’s chest had shown a large mass—not in his lungs, but in the space between them, the area called the mediastinum. A biopsy revealed the final diagnosis—Hodgkin’s lymphoma, a cancer that attacks the immune system. He had what is called a paraneoplastic syndrome, a rare complication in which antibodies to his cancer attacked the healthy cells in his brain.

  Randy had surgery to reduce the size of the mass and then started chemotherapy. And slowly, remarkably, his memory began to improve. But the trip to New York remains vague, and his only memory of his weeklong hospital stay is his nurse telling him he was going home.

  His fiancée remembers the day she realized he was getting better. It was several weeks after leaving the hospital. She reminded him that he wanted to get a haircut. He told her that he tried to go the day before but the line at the barbershop was too long.

  She almost cried. “At that moment,” she told me, “I finally knew that the man I loved was still in there and that he was coming back.”

  When I called Randy after receiving his e-mail, he still couldn’t remember much of his ordeal, but he understood the illness and the prognosis. One doctor stood out from the crowd of physicians caring for him. Marc Wein was a medical student at Brigham, and he had become fascinated by Randy and his illness. He read voraciously about the disease, tracked down case reports of other patients with a similar manifestation of cancer, and came back again and again to explain it all to Randy and Leslie. Together Marc and Randy created the story of this remarkable diagnosis that made sense to both of them. And that made all the difference.