WHAT IT’S LIKE TO BE A PATIENT

20 May

WHAT IT’S LIKE TO BE A PATIENT

Medical Care Starts with the Patient’s Story

The story is never over.

One cannot be a good physician without understanding what it is like to be a patient.

THE HISTORY

A 50-year-old physician had chest pains for two months, brought on by exertion and relieved by rest. His physical examination was normal. A cardiac stress test was posi- tive: Walking on the treadmill reproduced his pain, and the change in the electro- cardiogram pattern  indicated  that  the  pain  was from coronary insufficiency, impaired circulation of blood to the heart. A coronary angiogram, an x-ray of the ar- teries of the heart, showed multiple areas of coronary artery narrowing. A few days later, he had coronary artery bypass surgery. Three days following surgery, he had a three-hour  period of extremely rapid heartbeat, a disturbance of cardiac rhythm called “atrial fibrillation with rapid ventricular response,” associated with chest pain and hypotension, a drop in blood pressure; it resolved with treatment. He was dis- charged from the hospital eleven days after the surgery, recovered uneventfully, and returned to work part-time in ten weeks and full-time six weeks after that.

This medical history, equivalent to a brief oral case presentation or to a note in a patient’s chart, summarizes the story of a real illness.

Is it the whole story? And if not, is it sufficient to describe what the patient and his family went through? And if there is a longer story, is appreciation of that saga important in knowing how to care for the patient and his family?

What can we learn from knowing the whole story?

THE STORY

The patient kept a journal of his memories of this period in his life. Here is the story in his own words.

I had had pain in my lower teeth on vigorous exertion for many years. I recall that even playing touch football twenty years ago had brought it on. So when I noticed it again, I didn’t pay much attention to it. “It’s simply more of the same,” I thought, “unlikely to be of consequence.”

For two months though, beginning in May, I noticed that besides the pain in my teeth, I would have pain, not severe, high up in my chest and in my left arm with certain activities such as walking in the park with my son and walking across the street from my office to the hospital. The pain would promptly go away, so how se- rious could it be, I thought. To validate that point, I would climb three or four flights of stairs. Always the last flight would bring on the pain. I would fall asleep at night thinking about it, wake up in the morning thinking about it, and always say to myself, “It’s not my heart.” I told no one, not even my wife, in whom I confide everything.

And then in July, after two months of this, I said to myself, “It’s not just me who depends on me, but also my wife and my two children,” and “My children are both going away in the next two months, one to study abroad for a year and the other to Boston, 1,400 miles away, to start college. If I am really ill, it would be unfair to spring this on them from a distance.” And finally, I asked myself, “What would I advise me if I saw myself as a patient?”

So I made an appointment for a stress test to be done two days later. Then I told my wife about the pains and the test. And, doing my best to deny that this could be anything serious, on the night before the stress test, I called a friend in Boston to tidy up plans for a vacation later that month. I saw my personal physician the morning of the test and told him about my symptoms for the first time. I kept be- lieving that I would pass the test.

The doctor who monitored the test stopped it after two minutes. I knew that meant that the test was positive, and she confirmed my fear. I returned to my per- sonal physician who by then had been informed of the results. He prescribed nitro- glycerin to be used in an emergency and arranged for me to see a cardiologist two days later.

My wife picked me up at the office. I told her the results. My voice broke and I wept. Later I spoke to my children, telling them for the first time what was going on.

That evening I told my office partner. The next day I worked and saw patients. “Why not?” I reasoned. “It will be an easy day—no especially difficult problems.” But I was preoccupied and couldn’t concentrate. At the end of the day, I told my staff, and again my voice broke. But even then I was tentative about how long I’d be away—the stress test might be falsely positive.

The next day, Friday, I did not work. With my wife I saw the cardiologist. The coronary angiogram had already been arranged for the following Monday, and I asked that I be the first case of the day, in order to avoid delays or postponement, common occurrences on a busy cardiology service.

Whom else did I tell? My rabbi, with whom I had a close relationship and friendship. My father, 81, healthy but emotionally vulnerable and living in an- other city. My sister, a nurse, also living elsewhere.

My father’s immediate response was, “I’ll be there tomorrow.” I was annoyed that he decided without asking me and I asked him not to come until we knew the results of the angiogram. Later he called back and said, “Tell me what you want me to do.”

What did I feel? Sadness. “I’d hate to lose me,” I thought. “I’m a helluva guy.” And shame, that I didn’t take good enough care of myself, that I wasn’t “a jock.”

The following day, Saturday, I went to our synagogue, a small congregation. In my behalf, the rabbi said the special prayer one says for an ill person, asking for “healing of body and healing of spirit.” I had mixed feelings about acknowledging to those gathered that I was not well. On the one hand, I wanted the support of my congregation; on the other hand, I was embarrassed by my illness.

The next day, I attended a previously scheduled gathering of my wife’s family. By then my problem was no secret, and they all gave me their moral support. One had had a similar problem with a good outcome. His suggestion: “Get another opinion.”

On  Monday, I entered the  hospital for the  angiogram. A lot was running through  my mind.  Should  I  take  the  pills routinely  prescribed before an angiogram? What’s the test really like? Could it harm me? What’s the outcome go- ing to be? The test went easily enough.

Later that day, the cardiologist came to my room to discuss the findings. He told my wife and me that there were a number of narrowed arteries and their branches, that the situation was serious, and that he was uncertain if surgery would help. We were stunned!

My children, who had been part of this drama since the previous week, had been sent out of my room by the cardiologist for what we thought would be a brief talk with us. That talk lasted over half an hour. When they returned, they were outraged at having been excluded. “Don’t ever do that again!” they said.

The next day the surgeon arrived and said that surgery was an option and that he could do it. With the cardiologist, I examined my choices. Treatment with med- icine alone would not improve the long-term outlook. Angioplasty, using a bal- loon-tipped catheter to enlarge the areas of narrowing, might be a possible remedy but had its risks. Surgery, though also risky, seemed the best choice.

We agreed to proceed with the surgery. Of each of my physicians, the internist, the cardiologist, and the surgeon, I asked for continuity of care, that each would see me daily and be personally available, rather than a surrogate. I did not want de- cisions about my care to be made by someone who did not have a complete per- spective about me medically. I wanted to be looked after by someone who knew who I was. I did not want too many cooks spoiling the broth. I did not want to feel abandoned. They agreed.

Then I went home to await surgery, scheduled for the following Friday. Again I requested that I be the first case of the day.

In the interim I arranged my affairs. Though I felt things would turn out well, I approached the event by planning for the possibility that I might not survive. With my wife and my attorney, a close friend, I reviewed my will, my assets, my personal and office financial matters, and my insurance, and I made sure that my wife had access to all of this material. I was struck by my wife’s strength. I wrote individual letters to my wife, to my son and daughter, and to my father and sister. Before the surgery, I gave each the letter. These were not letters “to be opened in the event of my death” but rather ones to be read immediately (and maybe more than once), expressions of love, affection, and admiration, validating our relationships. I occu- pied myself with many tasks. I “faced my mortality.”

On Thursday, early in the day before surgery, I checked into the hospital. In the course of interviewing me, the admissions clerk inquired about how much cash I was carrying: “Do you have any money?” Never one to pass up a straight line, I an- swered, “I make a living.”

Always looking at how things can be done better,  I found myself silently critiquing the nurse’s presentation as she gave me instructions on how to prepare myself for the surgery and what to expect. To familiarize us all to the surroundings and to show us what a patient looks like immediately after surgery, the nurse took my family and me to the intensive care unit where I would go after surgery. As a physician, I had been there many times. Now through different eyes, I saw what a patient looked like after surgery: very weak, pale, and hooked up to tubes and a ventilator.

My rabbi visited and asked, “What do you fear most?” My immediate answer, given without thought, was, “Dying.” It seemed like the right thing to say. But after a moment’s reflection, I gave a more honest answer, “Coming out of this a different person—at the worst, having a stroke, but, short of that, having a different person- ality, losing my sense of humor.” I asked him, “What’s the appropriate prayer for this moment?” He replied, “the Sh’ma,” a signature prayer of Judaism, which is a declaration of faith and belief in God. I had recited this prayer hundreds of times during my lifetime, but it took on new and more personal meaning to me this time when I once more repeated, “And you shall love the Lord your God with all your heart” and “These words which I command you shall be in your heart.”

That evening, the nurse told me to shower and to scrub my entire body with a special soap to minimize the chance of infection after surgery. I scrubbed long and hard, anything I could do to ensure success.

The surgeon had dropped in earlier to talk and answer questions and had told me to call him at home if I had any further concerns. At 10 p.m., I called him to point out that I had athlete’s foot; I had some time ago read a medical article that suggested that such a condition, even though minor, risked contamination  of the vein that was to be taken from my leg as a bypass graft. Even then I was still person- ally involved in my care. He acknowledged my concern and assured me that he would pay special attention  to the donor vein.

Finally I asked myself, “What strengths, what prior experiences could I call upon from my experience of fifty years?” I recalled my mother’s life and the exam- ple of her courage and equanimity as she dealt with breast cancer. I recalled my days in college and medical school when, at a certain point in preparing for an exam, I would declare, “I’ve done all I can do,” and I would quit studying. At about

10:30 on this night before my surgery, I said to myself, “I’ve done all I can do. It’s time to relax. This is a new experience for me. Let’s see what I can learn from it.”

I felt good about myself. I felt that I had made peace with my father and my sis- ter, with whom my relationships were at times volatile. I felt I had lived a good life. I was proud of my marriage and of where my children were in their own lives. I was at ease and as serene as I have ever been.

On Friday morning, the day of surgery, I was awakened at 5:30, and I showered and scrubbed again. My family arrived, and they accompanied me to the door of the oper- ating room suite. This was the summer of the Iran-Contra hearings in the Congress and among my last words to them, to lighten the moment, were, “Reagan knew.” An IV was started, and that’s the last thing I remember before waking up after surgery.

At different times during the period of surgery, friends, the hospital director of nursing, and our rabbi visited my family as they waited at the hospital. It meant a great deal to them.

My next memory was a nurse saying to me, “Dr. X, wake up.” I was connected to a ventilator, a number of tubes, and a cardiac monitor, the normal routine. My fam- ily visited, and I asked for a clipboard, pencil, and paper, on which I wrote, “Reagan knew,” signaling to them, and validating for myself, that I was intellectually intact and my sense of humor was still there.

The next few days brought various treatments and manipulations. Still looking after myself, when the tube connecting me to the ventilator was to be removed, I signaled the anesthesiologist, “Be sure to deflate the cuff.” I noticed blood on my leg wound dressing and asked the nurse if that was unusual. The nurse said, “More than we usually see,” and that concerned me. Later that day, the surgeon told me that the amount of blood was normal. I had chills and wondered whether they were related to one of my medicines. My doctor had the same thought and discontinued the drug. In anticipation of the removal of a tube from my chest, I took a codeine pill, and that was the last of the narcotics I required for surgical pain. I coughed fre- quently and used the “blow bottles” to minimize the risk of lung infection. I helped to take care of myself.

On Monday, three days after surgery, I no longer needed quite so much observa- tion and was moved to a step-down ward. That evening, I noticed sporadic irregu-larities of my heartbeat and then an abrupt change to a rapid heart rate. An alarm must have gone off at the nurse’s desk; she appeared and told me what I already knew. She phoned the cardiologist—not mine, but the one on call—and he pre- scribed an intravenous drug. I said, “Call Dr. Y [my own cardiologist],” and he pre- scribed a different medication. I wondered if the intravenous line was running and delivering the medicine adequately. I wondered if the nurse would have called my doctor if I hadn’t asked. I wondered if the nurses knew what they were doing. My heart continued to beat rapidly. One nurse told me my blood pressure was down.

I was rushed back to the intensive care unit. By now I was having pain in my arm. “Please ask Dr. Y to come in,” I said to the nurse. I still had a part in overseeing my care. I felt that if I didn’t stay involved, harm could occur.

My mind raced. My blood pressure is down and I’m having pain; my grafts must be closing. I could die. All of this preparation and surgery has been for nothing. My main defenses—denial, intellectualization, rationalization, and humor—no lon- ger worked. Instead, for the first time, I felt real terror. Afraid to hear the answer, I had to ask the doctor, “Will I survive?” “Yes,” he answered gently and with reassur- ance, and then he said, “Let go.” He meant, “Relax and let us handle this.” But I was still figuring, struggling, and trying to make decisions. I wondered if I could die from this, if I should ask my wife to come to the hospital for yet more last-minute words.

Now it was after midnight. Someone from the intensive care unit called my wife. Very much afraid, she struggled with whether or not to come down, felt she could not share her fears with our children or my father and sister who were staying with her, and decided to stay home. She had to deal with other feelings also, for not so long before, she had lost her mother after a long illness and years ago her father had died suddenly from heart disease. “Call as often as you want,” the nurse told her. She called frequently, awake all night.

With morphine, other drugs, a blood transfusion to correct the postoperative anemia, and the passage of time, the abnormal rapid heart rhythm resolved. So did the pain. The entire episode lasted less than three hours. Nevertheless, it is the most vivid of all my memories, and when I recall those moments and retell that part of the story, I often will find myself near tears.

With the shift change at 7 a.m., a new nurse took over my care. On meeting me for the first time now, she said: “Oh! You’ve had heart surgery! You’ll need to diet! You’ll need diet foods! I sell diet foods!” I was amused by the absurdity of the situa- tion. Here I was, having just faced what I thought was my impending death, and this nurse was talking to me about diet foods. In a less generous moment later, I thought how unaware and thoughtless this person was not to have acknowledged what the night had been like for me.

The rest of the day was uneventful, and the following day I was transferred back to the step-down ward and the same room where the arrhythmia had started. I wondered if this room was unlucky for me, but I quickly dismissed that thought with, “That’s nuts! God would not be so frivolous.” And then I settled down to a routine for the rest of my hospital stay.

Two nurses were primarily responsible for my care, one from 7 a.m. to 3 p.m. and another from 3 p.m. to 11 p.m. Each was competent but had a different style. One would check me over and say, “Your pulse is 80, your blood pressure is 120 over 80, your lungs are clear” in a very businesslike way. The other would do all of that, but also she would talk with me, inquire about my feelings, and listen. I found myself, after a few days, becoming angry with the first nurse. She never asked, “How is it going for you?” or “What’s it like for you?” I weighed the pros and cons of speaking to her about this, and ultimately, a day or two before my discharge, I told her what was on my mind. I started with a compliment. “I appreciate the care you’ve given me,” I said, and then I told her what I thought was lacking: attention  to my feel- ings. She was defensive. “I thought that because you are a doctor, you didn’t need that kind of attention,”  she said. “There was always someone in here visiting.” (There wasn’t.) I told her that the “because you are a doctor” excuse was actually a bigoted statement, for she was judging me not as an individual but as a member of a group. I was, first of all, a patient and a person, that is, a person in need, and my needs were the same as other patients’.

By the weekend, things were going well, except that I again began to notice tooth pain, similar to what I had noticed before the surgery. What did it mean? In physical therapy, I noticed some pattern changes on the EKG and asked the thera- pist about them. She said, “The ST segments look better.” But no one had said they looked bad in the first place. More reason to worry.

On the last day, I took another stress test and passed. The uncertainty about the pain in the teeth was resolved again for the moment. Before I left the hospital, I completed a questionnaire to test how much I had learned in the cardiac rehabili- tation program, which included a unit on sexual relations and at what interval af- ter surgery I could resume. To test my knowledge, the questionnaire asked, “When can you have sex?” My answer: “October 3rd at 3:15 p.m.”

I have always told patients who are returning home from a hospital stay that the first few days are difficult ones. More than one realizes, a patient depends on the hospital staff for many things, and being home without the extra hands and the re- assurance of the hospital surroundings is an adjustment. And it was for me. On the first night, I had to get up several times to urinate, and each time was a major task—my wife had to help me out of bed and get me moving. I solved that problem the next day by sending my son to get a plastic urinal to keep at my bedside. I needed my wife to help me to climb stairs and to change positions, the things that nurses and others had helped with in the hospital.

Two days into my convalescence at home, I developed pain in the left side of my chest and I found that my ability to move air into the blow bottles was much less. I thought the worst: Maybe I had a pulmonary embolus, a blood clot that had injured my lung. But I didn’t call my doctor and decided to wait it out. I was back looking after myself, being my own doctor. The pain resolved after a few days.

With my wife, I developed a routine—eating, walking, napping, and receiving one or two visitors a day—and that schedule took up most of the day. When friends and family visited over the next few weeks, I found that the quality of the visits and the conversation varied, from talk that was light and inconsequential to conversa- tions that were best of all for me, the opportunity to talk about feelings and sub- stance.

Early on August 23, my birthday, my wife received a phone call informing her that her cousin, who had been my patient and was only a few years older than I, had died suddenly of a heart-related problem. When she told me, I wept for the first time after surgery. I realized that I cried not only for him but also for myself, a re- lease of accumulated emotion encompassing all that I had gone through over the last few weeks.

I attended a cardiac rehabilitation group three times a week. I was the youngest and the newest in the group. The therapists were optimistic and encouraging but would say to me things like, “Your blood pressure is up today. Has it been up be- fore?” and, pointing to my heart rhythm tracing, “Are these irregular beats atrial or ventricular in origin?” I had to keep reminding them that in this place I was a pa- tient and not the doctor.

I reflected a great deal during this time. I thought about the uncertainties of the future. Would the symptoms recur? Would my life be shortened? I recognized that I was far more robust than before the surgery. I was more active, and yet I knew there were things I could not do. It would be foolhardy, I thought, to take canoe trips into the wilderness. Though I had never done that, that limit symbolized that my illness placed restrictions on my life, which had been unrestricted before. During this time of convalescence, many symptoms came and went without explanation, but during their presence, I always asked myself, “Is this serious? Is this heart pain again?”

I found that my wife had many fears also, as she does even now. Early on, when we would walk together and I would pause for a moment, she’d ask, “Is anything wrong?” When I would come home later than expected, she wor- ried. I learned to call if I would be late, and I still do. We had to take care of each other.

During the first few weeks after surgery, I found it easy to rationalize giving up many of my usual tasks by saying that I was “sick.” My wife paid the bills and took on most of my other responsibilities. I was reluctant to give up that sick status but ultimately began to declare myself a well person, and, in mid-Octo- ber, 10 weeks after the surgery, after visiting our daughter in Boston, I returned to practice for half-days. Six weeks after that, in December, I resumed full-time work.

My greatest concern on returning to work was that my mind would not be as good. But it worked as well as ever. I found that the greatest stress was the number of matters competing for my attention.  When I had been home, I could concen- trate on one thing at a time and take my time doing it. Now I realized that my work, medical practice, was an extremely complex logistical task, and the necessary tran- sition to that mode of living was my greatest hurdle.

In January, my wife, daughter, and I all flew to Israel, where our son was study- ing, for a family reunion.

WHAT DO WE LEARN FROM THIS STORY? WHAT ARE SOME OF THE ELEMENTS OF THE HUMAN  SIDE OF MEDICINE?

The details of this story provide insights into what happens when some- one recognizes that he is not well, seeks advice, and connects with a physi- cian. The patient counts on accurate diagnosis and wisely chosen therapy; what actually takes place is far more. Unless we understand how compli- cated the process really is, we forgo the opportunity to look at it analytically and learn from it.

To teach all of this, I use two paradigms.

The first is the biopsychosocial model, central to my education at the Uni- versity of Rochester, where I learned to see all patients in the context of their life stories. Illness does not just happen. Important biological, psycho- logical, and social factors—and often all three—contribute. Part of attend- ing to patients and caring for their illnesses is discovering all the possible elements of their illnesses; neglecting any part may lead to only a partial so- lution and incomplete care and may delay or prevent recovery.

The second paradigm is a series of five steps, which provide a systematic approach to looking at each encounter with a patient, to learn from it, and to add to one’s experience.

Step 1: the story. The patient’s story is what really happened and the asso- ciated feelings, emotions, and reflections. It holds most of the clues to diag- nosis and treatment. More than any single laboratory or x-ray test or even the physical examination of the patient, the patient’s story gives broad and valuable information about what is wrong.

Step 2: the history. Inquiring about the patient’s story, then editing and re- shaping it into a useful oral and written format, is the process called “taking the history.” The product, the medical history, provides  the basis for defining the issues and taking action.

Step 3: the issues. By defining the issues, we explore all the dimensions of a medical problem and not simply the diagnosis. Issues are questions that are raised by the patient’s story and the history. They include at least the fol- lowing:

•  What is the diagnosis? Given the diagnosis of coronary heart disease (or diabe- tes, appendicitis, etc.), what additional information do I need to care ade- quately for this patient? Unless we know all the elements of the diagnosis, we cannot completely address treatment and care.

•  What are the treatment options? Of all the options, what is the best choice?

•  What is the prognosis; that is, how will it turn out?

More often than not, there are additional issues, such as

•  Why did this happen now?

•  How will this illness progress, if treated or untreated? Will treatment make a dif- ference?

•  How will the illness affect the patient’s self-image?

•  How will the treatment of this illness affect the patient’s other illnesses?

•  What is the impact of this illness on the patient’s family?

•  Can the patient afford the treatment?

•  Are there ethical considerations?

•  What can go wrong?

Each diagnosis and problem has its own set of issues. If the story and the his- tory are incomplete, then the definition of the issues will be inaccurate and the actions taken may be neither appropriate nor beneficial.

Step 4: the doctor-patient relationship. The relationship between the patient and the physician facilitates care. In each transaction, physicians should ask, “To what extent can the patient and I use that relationship to enhance care?”

Step 5: What did I learn? Step 5, the most important one in the physician’s professional growth, integrates all the other steps. Asking “What did I learn?” allows insight and discovery. “What did I learn about the patient, his experience of illness and how he copes, the disease or problem, the pro- cess of obtaining the information from the patient and other sources, about what can go wrong? What did I learn about myself?” Even when an illness is incurable or when one does not get along with a patient, there is much to learn. When things go badly, it leads to asking other productive questions, “What happened? How can I prevent this from happening again?” It is the way we learn from experience.

What one learns runs the gamut from the simple to the profound. Here is what I learned from this story.

Patients consult a physician at different stages of their illness. The threshold for consulting a physician is different because each of us has different per- ceptions of what is going on, different fears, and different defenses. This pa- tient  used denial  frequently during the  early stages of his symptoms, though, as a physician, he should have known better. Other factors pertain. Timing (his children were going away) and the influence of others (“My wife made me make this appointment”  is a common statement)  often breach the threshold for consulting a physician.

The medical history and the story from which it is derived are important.  De- spite his having serious underlying heart disease, this patient had a com- pletely normal physical exam. Only the patient’s story gave the clues to the diagnosis.

For each problem,  there are implied questions: What is the cause of this problem (the diagnosis)? What is the solution (the treatment)? How is it going to turn out (the prognosis)? These are some of the “technical” issues of medicine, and the physician must address each of them with each trans- action.

Even with excellent care, things can go wrong.  This patient experienced drug-induced chills and a disorder of heart rhythm. The physicians and nurses promptly recognized and treated each complication of treatment. Drug- and treatment-induced illnesses occur frequently.

Illness has symbolic meaning to patients, and patients have psychological reac- tions to illness. This patient  initially felt sadness, shame, and embarrass- ment.  Other  patients  may feel anger,  resentment,  disappointment, inadequacy, or failure. They may feel that they are being punished for pre- vious missteps. Some see illness as an opportunity for growth. Some feel that their religion has failed them. Some feel isolated. Recognizing the di- versity of meanings and psychological reactions enables the physician to individualize care.

Patients have psychological defenses, some healthy and some not so healthy. This patient’s defenses included the following:

•  Denial. “It’s not my heart,” he said when he first started having the discomfort, and he tried to reinforce this denial by climbing stairs despite the pain and by pressing on with his vacation plans.

•  Intellectualization. “This is a new experience for me. Let’s see what I can learn from it.” He saw himself as a participant-observer. From the beginning, he critiqued the instruction and care he received and how his physicians and oth- ers said things to him. It was a new adventure.

•  Humor. His comments to the admitting clerk and to his family on the way to surgery helped him and his family through the crisis, and his family shared his humor.

•  Optimism. He had a sense of the future. The surgery was not an end in itself but a bridge from poorer health to better health.

•  A desire to maintain some sense of control over his care. Though he did not need to call all the shots, he found himself participating actively in his care. But this was a double-edged sword. On the one hand, he would have preferred to let others care for him. As a physician, though, he was well informed about the na- ture of his illness and treatment and the potential complications of both, and he had expert knowledge about himself. He also knew that sometimes hospital sys- tems fail, and so he could not stay uninvolved. This is an experience common to many who are health professionals.

Ultimately, his healthy defenses broke down and gave way to fear.

Patients have other strengths that serve them well during the stress of the illness. The task of the physician is to identify and accommodate those strengths and to encourage patients and their families to recognize and use them dur- ing their illness. Physicians need to ask, “Does the patient have the support of family, friends, a religion or faith or philosophy of life? Can these be re- sources for him during a period of stress?”

Religion and his synagogue community were resources for the patient in the opening story. He was aware of the ways of looking at things that his re- ligion offered and had a relationship with his rabbi. He was able to draw upon these resources for comfort and for support. For others, religion may not be of use.

Illness is a family affair. His wife, son and daughter, and father and sister were all involved. His illness and the various steps in his recovery touched each of them in different ways. Not only did the patient have to deal with his illness, he had to deal with its impact on them. To be a complete physi- cian, one must identify the important relationships and the important is- sues with each.

Others experience the drama of a patient’s illness. To varying degrees, many were touched by the drama of his illness: his friends, physician-partner, of- fice staff, patients, and rabbi. With the drama of a potentially serious illness comes redefinition and clarification of relationships. He found valued rela- tionships that he did not know he had and disappointments in existing ones.

Previous experiences affect how patients and their families deal with the cur- rent drama. This was a crisis for the patient, but not his biggest, he reflected, and he could call upon the experience gained from other dramas in his life—his mother’s illness, for example—and apply those lessons to his cur- rent drama.

His wife’s father had died suddenly from a heart-related event, and now her husband’s illness was a reminder of that tragedy. Nonetheless, she dealt with the current situation with equanimity. For her husband and their chil- dren, she was a stabilizing influence. Their children felt no obvious panic. They were able to talk about their own feelings and even to ask their father about his. This shared experience will serve the family well in the future, for they will remember that they weathered a severe stress together and that they can depend on each other.

Patients and their families can handle bad news. The news was overpower- ing at first, but they dealt with it. Physicians need not hesitate to talk about serious issues.

Illness is a stress superimposed on the patient’s ongoing drama of life. Though many patients have a well adjusted and ordered life, some come to the mo- ment of illness or surgery from a disorganized and chaotic life. If our lives are in order, we can better handle the stress of illness. As physicians, we need to be aware of what is going on in the patient’s life by asking what few asked of this patient, “What’s this like for you?” Is this simply heart surgery, or is this heart surgery superimposed upon, for example, a disrupted mar- riage, loss of income, or loss of prestige?

The drama of one’s life continues despite the illness. As physicians, we write a one-word order at the end of a hospitalization: “Discharge.” It would be far better if physicians were sufficiently informed about a patient to write: “Discharge to a peaceful home and family” or “Discharge to a dis- rupted, chaotic home.” Then we might have second thoughts about the best moment to send the patient home.

Serious illness is chaotic. Illness is not as simple as “I got sick and then I got better,” but rather a series of ups and downs, surprises, catastrophes and res- cues, and human reactions—some great and some disappointing—from patients, families, physicians, and other professionals. Physicians can ac- knowledge the chaos to patients. At the very least, they should not con- tribute  to  it  with  ill-chosen words, actions  uncoordinated  with  other colleagues, or inaccessibility.

Illness, serious or not, is laden with uncertainty. Patients, their families, and physicians need to deal with that uncertainty. When we acknowledge un- certainty, we often reduce anxiety. To this day, the patient believes that the reason he required so little medicine for pain after the surgery was that he was well informed about what to expect. In each illness, a statement about prognosis recognizes and addresses uncertainty.

There are no barriers in the hospital. Certainly, physical barriers cease to exist. Hospital staff enter a room without knocking, and frequent interrup- tions punctuate each hour. There are no emotional barriers either. Ill pa- tients are vulnerable physically and psychologically. Emotions and feelings are bared. But the barrier is down the other way also, for this is an opportu- nity for a sensitive physician to help address fears and faulty relationships that may hamper recovery and a successful outcome. Serious illness is an opportunity for patients to explore their values and philosophies of life, to validate themselves, and to heal relationships.

Language and how physicians and other health professionals communicate

have great impact on patients and their families, who hang on every word from

physicians and others associated with their care. “The blood on your dressing is more than we usually see” were words of small consequence to the nurse, but such comments raised additional questions of uncertainty for the pa- tient. Interpretation should accompany every piece of information. Com- passion, understanding, and accessibility comfort and help prevent panic.

There are bigotry and prejudice in the medical setting. Most of this is due to thoughtlessness. Bigotry or prejudice means viewing a person too narrowly or as a member of a group—for example, an ethnic minority, immigrants, the elderly, women, “heart patients,” physicians—rather than as an indi- vidual. When challenged about the neglect of his feelings as a patient, the nurse squandered the opportunity to address the fears, apprehensions, and sense of uncertainty that the physician-patient had in common with other patients. As physicians we need to cross the barrier from a one-dimensional view of patients to a fuller view. Prejudice limits accurate, creative decision making.

Medicine is a collaborative profession. Often, more than one person is in-volved in the care of an illness. Each needs to know how to work with the others and with the patient. There is always someone who does not get the message.

Being there is important. The contemporary actor and director Woody Al-len said that “80 percent of life is ‘showing up.’”1 Being there in person, rather than calling or delegating, carries extra weight with the patient. Though  the  telephoned  instructions  to the  nurse during the  patient’s frightening period of the arrhythmia might well have been appropriate, the cardiologist’s  presence provided the recognition of the seriousness and the reassurance that the patient needed.

Illness is a drama,  and the patient is the center of the drama. Neither the phy-sician nor the hospital nor the third parties—hospital, corporate structure, insurance company—takes precedence over what is in the best interest of the patient.

The story is never over. A hospital encounter or a visit to the office may last  only  fifteen  minutes,  but  the  story goes on  seven  days a  week, twenty-four hours a day. Even when it seems as if the drama is completed, there are always more chapters. There is always something more to do in re- fining the diagnosis, treatment, or prognosis or supporting the patient and the family.

Stories teach. Wise physicians read between the lines of a brief history like the one at the beginning of this chapter. They look beyond diagnosis and treatment to see that in each illness, there is a drama that encompasses almost all the elements we learned about in understanding this patient’s story. Then they draw on their experience in order to provide complete care, technically excellent and complete on the human side.

To develop the medical history, one needs the story. To see illness in the context of the person, one needs the story. To see an ill person in the con- text of the whole person, one needs the story. When the diagnosis seems elusive, when there are different points of view among consultants, or when they want to find out how a patient is coping, wise physicians will re- turn to the patient’s story.

Reflecting on this patient’s story and asking, “What did I learn?” allows us to define many of the elements of the human side of medicine. Each of the subsequent sections addresses them in more detail as we discover what it is like to be a patient and what it is like to be a physician. We will start with short histories from moments at the end of patients’ lives when tech- nical matters are less crucial than human ones.

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