Learning from Patients’ Experiences
When I have a physician who listens, it’s magic.
Being a patient goes beyond the symptoms of the illness to the experience of being ill. Anatole Broyard wrote, “Each man is ill in his own way.”1 He re- flected on his illness, metastatic cancer of the prostate: “My friends flatter me by calling my performance courageous or gallant, but my doctor should know better. He should be able to imagine the aloneness of the critically ill.”2 Consciously or not, patients apply their philosophy of life to the med-ical situation at hand. Common sense is often at the foundation. An 80-year-old man reflected on his illness, unstable angina, which was im- proving with medication. “I know it’s better, but I’m 75 years old…. It’s like, ‘We’ve got a good car, but it’s twelve years old, so shall we drive [from St. Paul] to Los Angeles?’ I don’t need to take unnecessary chances.” Our philosophy of life affects difficult decisions about tests and treatments including transfusions, surgery, chemotherapy, and end-of-life care. Part of the physician’s task is to discover each patient’s philosophy and needs. Sometimes the doctor has to read between the lines.
Not from any textbook or formal teaching, but from patients, their fami-lies, and other sources, I learned all of what follows.
Patients need moral support. “You have a 90 percent chance of improve- ment with this surgery” is information. “We’ll do everything we can to make this turn out well” is support.
Patients need to be understood. A nursing home resident who had long-standing unexplained abdominal pain said, “Thank you for spending the time with me. It doesn’t solve anything, but I appreciate the fact that you try to understand me.” Another patient told me, “If you find a doctor who understands you, you can do anything.”
Patients need to be validated. “One must visit a wise man from time to time to discover what one already knows.”3 Patients may already have figured out that their symptoms are not serious, but they need the reassurance from someone with a credential, the “wise man” called “Doctor.” A patient may be grieving over the loss of a spouse and need to be reassured by his physi- cian that he is not going crazy. Even though a patient may be expert in the care of her diabetes, she still needs reassurance that she is doing the right thing. “You didn’t minimize,” one patient told me. “You believed in me,” said another.
Patients need to understand. The patient and family may be hearing things for the first time and need the perspective and the time to understand what the physician, who has been wrestling with the dilemma for a while, al- ready comprehends. The patient, members of the family, and the physician each may have a different view. Not recognizing this phenomenon may ex- plain why there is conflict among them. Only when each of the partici- pants—physician, patient, and family—is dealing with the same information in the same context can they be allies. Often it is not so much the degree of severity of the symptom that brings the patient to the doctor as the need for explanation.
When a 49-year-old man developed chest pain after seven days of treat-ment for pneumonia, he thought, “I’m back to square one. This is the pain I had in the beginning of my illness. The treatment has failed.” The physi- cian knew better. The pain was pleurisy, caused by friction between the in- jured surface of the healing lung and the inner chest wall. By explaining this to the patient, he was able to reassure him. All the patient needed was adequate explanation. He was less bothered by the pain than by the ques- tions: “What does it mean? How will it turn out?”
Patients need to talk to the physician; sometimes a surrogate just will not do.
When a 40-year-old woman with rheumatoid arthritis had more aching in her hands and wrists, she called the doctor. The office assistant took the message and relayed these instructions from the doctor to the patient: Use heat and acetaminophen. The patient needed to talk with the doctor, to explain her symptoms, and to talk about her concerns and her fears. She wanted his attention and reassurance. Only a direct conversation could meet those needs.
Patients need context. When a radiologist told my patient that “you have many small changes on the brain MRI,” he and his wife called me in panic, concerned that this was the beginning of Alzheimer’s disease. I was able to provide context and reassurance that the changes were not significant.
However serious or trivial the illness or complaint, patients need a prognosis, a prediction of how it is going to turn out. Otherwise fantasies may take over. “There’s a better than 90 percent chance that this therapy will cure your lym- phoma, though we’ll keep track of it for years to come.” “Your sore throat should be better after a few days.” “Within six weeks of therapy, your shoulder will be back to normal.” After such an explanation, a patient told me, “If you know how it’s going to turn out, that it’s going to get better, you can handle a lot more.” When my 65-year-old patient told me about the numbness on the side of his toe, a minor annoyance, he did not need an explanation of the cause and certainly not a description of the nerve anatomy of the foot. All he wanted was reassurance that it was not anything serious.
Patients have unasked questions and undeclared fears that need to be identified and explored. I ask, “What about this illness worries you the most?” Here are four vignettes.
• In her mid-20s, a social worker, the wife of a physician-in-training, developed a severe sore throat and swollen lymph nodes in her neck. She was concerned that she might have leukemia and was relieved when her physician, not her husband, told her, “You have mononucleosis.”
• In her late-20s, a newly married junior executive developed painful urination.
Her doctor treated her for a bladder infection. When the pain persisted and she noticed blood in her urine after a day of treatment, she called the physician, not because of the pain, but only to be reassured that she did not have a serious ill- ness.
• A 35-year-old bookkeeper who was tired and breathless was relieved to learn that she had Grave’s disease, an overactive thyroid gland. Her sister had devel- oped heart disease at a young age, and this was her real worry.
• Though he had known about his hypertension for five years, a 45-year-old man finally consulted a physician. He feared that he might be at risk for stroke after he learned of his friend’s stroke.
Patients need consistency. More than one explanation from different sources is confusing and adds to the chaos of a serious illness. Patients want an integrated story and consistent explanation and advice. A 70-year-old man with an abnormal heart valve, now infected, was faced with this di-lemma. The cardiologist told him that he should continue to take antico- agulant medicine to prevent a stroke. The hematologist told him that anticoagulant medicine could lead to brain hemorrhage. It was up to his primary care physician to integrate this disparate advice into a single rec- ommendation. Indeed, in situations where many specialists are involved, this may be the most important function of the primary doctor.
Sometimes patients need physicians just to listen. When her elderly mother complains to her about her problems, my friend asks, “Are you telling me this because you want advice, or because you want me to listen?” Some- times the patient needs neither answer nor remedy but simply someone to listen with respect and without interruption. A patient told me, “To have someone who listens and gives thoughtful, trustworthy advice is a blessing. When I have a physician who listens, it’s magic.”
Patients need a sense that the doctor cares. Clergy speak of “the ministry of presence.” A medical student called it “listening with your eyes”; that is, paying attention, attending. While camping, a 40-year-old real estate agent suffered third-degree leg burns when his stove exploded. He had already seen two physicians when he called me with concern about the adequacy of his care. I arranged for a burn specialist to see him and reviewed with the specialist my patient’s history of inflammatory bowel disease and treat- ment. Thereafter I was not directly involved in his care, which took place at another hospital. The patient thanked me “for orchestrating.” “But I did no more than you do in your work,” I said, for all I had done was facilitate the connection. “But you did it with love,” he responded. Doing it “with love” may be an overstatement, but being pro-active and involved certifies the physician’s commitment.
The house call is presence amplified. At home, physicians can see how patients and their families interact and adjust to an illness, how they main- tain their home, and how self-sufficient they are. The home is a personal es- say about memories, relationships, possessions, and values. Physicians who practice in small towns and are part of the community may already know much of this about their patients; in a city practice, the house call provides some of those insights. Especially if patients are inarticulate, seeing them at home tells a lot. These days, when a house call is rare, it is an impressive gesture to the patient and family. Years later, patients still refer with fond- ness and appreciation to “the time you came to our home.”
Patients need an advocate. Being an advocate and a general contractor who coordinates care is an important role for doctors. My son, not a doctor, tells of his volunteer work with the homeless in New York City. “Sometimes they would need to go to ten different agencies to get all that they needed. If they could actually do all of that, they could run their lives.” Patients need physi-cian-advocates to direct them through the complex system of care. If they could do all of that alone, they would not need a doctor. Broyard writes, “The doctor is the patient’s only family in a foreign country.”4
Some patients may be reluctant to call their physician. An 80-year-old friend had been vomiting for three days and finally called me rather than call her personal physician after office hours. I examined her at home, found that she was dehydrated and still unable to eat, admitted her to the hospital, and began treatment. I notified her doctor the following morning. Defensive and angry because she had not called him, the doctor failed to recognize the variety of reasons that patients do not call immediately: because they are afraid of a serious diagnosis, they fear hospitalization and uncomfortable tests, they may be embarrassed by their symptoms, it is human to hope that a symptom or an illness will go away, or they do not want to bother the doc- tor. Sometimes it is because the doctor is not that easy to contact. Patients have their own way of making decisions, and these patterns may reflect the quality of their experiences with other physicians. Some move quickly to settle unanswered questions, and others delay. Some need immediate an- swers; others are comfortable waiting. Physicians need to accommodate these differences.
Some patients may be embarrassed by the presence of their illness, its duration,
or its lack of improvement. A cascade of complications befell my 45-year-old patient after a work accident, and she was seeing many physicians—and an attorney—over a period of years. Some of the doctors were sympathetic, and others were skeptical and often failed to pay attention to her symp- toms. When she first saw me, she was embarrassed to tell her story to yet an- other doctor. Her wise attorney observed, “She may be complex, but she is no less entitled.”
Some patients are embarrassed by being on a medical assistance program,
which makes them feel even more dependent. On that subject, my 40-year-old patient with diabetes and hypertension commented, “It’s sort of like hav- ing a sheet that’s a little too small on a cold night. If you pull it up over your shoulders, your feet get cold. If you pull it down, your shoulders get cold.”
Some patients fear being dependent on family members and friends or on a physician who may underestimate the seriousness of their illness. A patient with cancer of the pancreas told me, “You don’t get top-notch care unless the doctors think you’re top-notch sick.”
Some patients fear being too narrowly defined as a sick person. Long ago I stopped referring to patients as “diabetics”; instead, each is “a person with diabetes.” I am careful to make that point directly to the patient when I say, “Your diabetes does not define you.”
Patients need to feel safe anywhere in the system. Whether patients are ill in the hospital, a nursing home, the physician’s office, or at home, they need to feel that there is a plan of care, access to someone in charge, and atten- tion to all their needs.
What do we learn from all of this? Physicians need to find out what it is like for the patient and ask, “How does this patient handle crisis? How is he handling this crisis?” Self-reflection does not hurt. The physician can ask, “What would this be like for me if I were in the same situation?” It helps when physicians examine their personal experiences with illness. One of my goals in teaching students is to help them learn from their and their families’ experiences. These lessons provide a context for examining fur- ther what it is like to be a patient. The next chapter recounts some of the students’ stories.