Learning about Uncertainty
Nobody is that precise. . . . The idea is to use your best stuff.
Patients and physicians alike would agree that one of the hardest parts of experiencing illness is the uncertainty.1 Patients can bear pain of great magnitude—the pain of childbirth, for instance—when they know the cause and that the outcome will be good, but lesser pains may be over- whelming when there are unanswered questions about the diagnosis, the treatment, or the prognosis. Many physicians struggle not so much with a patient’s illness going badly but rather with their own questions of uncer- tainty: Have I overlooked a possible diagnosis? Have I chosen the best treatment? What information am I lacking?
Seasoned physicians understand that uncertainty is a part of most en-counters with illness, but for those new to the experience—a patient or a family never before faced with a serious illness or a physician just begin- ning—the uncertainties are magnified. Yet we act even in the face of un- certainty. Uncertainty need not paralyze action.
A PATIENT’S HISTORY AND THE UNCERTAINTIES
This brief medical history seems straightforward:
A 66-year-old man told his physician that he was having chest pain. After cancer of the esophagus was diagnosed, he had surgery, radiation, and chemotherapy. Two years later, he was feeling well, with no recurrence of his tumor.
Yet this history is filled with uncertainties. Here are the details.
A 66-year-old man told his physician that he had been having intermittent mild chest pains for three months, occurring both at rest and with activity. When his cardiac stress test was normal, his physician investigated other possible causes for the pain. Gastrointestinal x-rays and endoscopy [examining the esophagus, stom- ach, and duodenum with a special instrument] confirmed the presence of esopha- geal cancer.
At the beginning, the patient wonders, “Is this pain, not very severe, worth seeing a physician about?” After the diagnosis is made, he wonders, “How will this turn out? Am I going to die? If I survive, will I be the same person? How will my family manage? Where should I have the surgery—in my hometown hospital or at the medical center?”
The physician’s uncertainties begin with diagnosis. He asks, “Where’s the disease? Is this the pain of unstable angina, which requires urgent inves- tigation, or can the evaluation be delayed for a few days to see what hap- pens?” When the cardiac stress test shows that the pain is not caused by coronary artery disease, he wonders, “Should I look for other causes? Where else could the disease be? In the esophagus? In the gallbladder? Could stress cause the pain?”
The patient underwent complex and extensive surgery: resection of much of the esophagus, removal of the tumor through both a chest and an abdominal incision, and placement of part of his stomach within the chest cavity to establish a connec- tion between the remaining esophagus and the stomach. Two days following sur- gery, he became very apprehensive. The nurse discovered that his blood pressure was low and called his physician.
The uncertainties for the nurse: What is the cause of his apprehension? Is he simply anxious, or are there other reasons including low blood pres- sure and infection?
The uncertainties for the physician: Is the blood pressure drop due to hemorrhage, to dehydration, or to a myocardial infarct (heart attack)? What are the priorities in resolving the dilemma? What should I do first?
An electrocardiogram was normal and showed no evidence of a myocardial infarct. Hemoglobin determination suggested dehydration rather than hemorrhage. When the blood pressure returned to normal after additional intravenous fluids were ad-ministered, the patient’s apprehension resolved. The next day, the report of the mi- croscopic study of the tumor showed cancer cells at the edge of the resection.
The uncertainties for the physician: To what extent do these micro- scopic findings influence the prognosis? What are the treatment options? Will they help or make the patient feel worse? Of all the options, radiation and/or chemotherapy or no additional treatment at all, which should I rec- ommend if I am uncertain of the outcome of treatment? How completely should I share these uncertainties with the patient and his wife?
The uncertainties for the patient: If there are no guarantees about the success of additional treatment and I might feel worse yet from it, should I take a chance on squandering time on useless therapy? Should I get another opinion? His wife shares all of these concerns.
The patient, his wife, and his physician spoke frankly about the uncertainties and agreed on additional treatment, which included radiation and chemotherapy. Three months later, after completing treatment, he noticed difficulty swallowing, which lasted for several days.
The uncertainties for the patient: What does this swallowing difficulty mean? Is my tumor back? Have all of this surgery and additional treatment been for nothing? The physician faces the same questions, but also asks, “Other than recurrent cancer, what else could be causing the difficulty? Could it be from a scarred narrowing of the esophagus from the surgery or irradiation, from an ulcer or an inflamed esophagus?”
Once again, the patient had endoscopy, which showed a narrowed scar at the site of the connection between the esophagus and stomach. After the endoscopist di- lated the stricture, the symptom resolved. A month later, the patient developed chest pain, which lasted for a day. He called his physician, who felt that the pain was of no consequence. He acknowledged the patient’s concerns and told him, “Sometimes, the best test is the test of time. Likely this is not serious. Let’s wait a few days and see what happens.” The pain resolved.
His physician saw him periodically thereafter, not only to review his interval story and examine him but also to address his uncertainties and provide support and perspective. Two years later, the patient was feeling well. The patient, his wife, and his physician understand that his disease, cancer of the esophagus, may not be cured and requires ongoing surveillance.
WHAT DO WE LEARN?
What do we learn from this patient’s story? What are the issues that re- late to uncertainty? What are the opportunities to enhance his care? What lessons do we learn from this story that help us care for other patients? All who are involved with the drama of the patient’s illness—in this case, the patient, his wife, his physicians and nurses—may be dealing with different dimensions of uncertainty.
For patients, uncertainty is part of most illnesses and symptoms. The uncer-tainty may be related to diagnosis, treatment, prognosis, or all of these. A patient with swollen lymph nodes may worry that she has cancer. A patient with a fractured ankle may be concerned that his pain after surgery means that he has an infection or that the fracture is displaced again. And so, no matter how trivial the illness or symptom, physicians should make some statement regarding diagnosis, proposed treatment, and prognosis. Even when no serious illness is present, physicians can conclude the transaction by saying, “I think that this will turn out all right” or “I think this pain will resolve in a few days.”
Physicians can authorize patients to acknowledge their uncertainties. They
can say, “You wouldn’t be human if you were not apprehensive about your upcoming surgery.” They can ask, “What concerns you the most about this illness? Having been ill for so long, you must have had your own thoughts about what’s wrong. What are they?” By encouraging patients to express themselves, doctors can discover unrecognized fears and needs.
Being unjustifiably certain can cause harm. Had the physician prematurely concluded that the first episodes of chest pain were angina and not ar- ranged for the other tests, he would have squandered precious time and the opportunity for effective treatment of the esophageal cancer.
Recognizing uncertainty stimulates creative thought. If this patient’s chest pain was not angina, what else could it be? If the posttreatment swallowing difficulty was not caused by recurrent cancer, what other treatable condi- tion could it be?
Physicians especially need to attend to apprehension and anxiety in the midst of illness. Although this patient’s apprehension was caused by dehydration and low blood pressure, anxiety may represent a patient’s unspoken strug- gle with uncertainty about diagnosis, treatment, and outcome. Physicians often regard such patients as “difficult patients,” when they really should be asking, “Do we create difficult patients because we don’t talk frankly about uncertainty?”
Physicians’ uncertainties may be multidimensional. Experienced physicians may not know initially the diagnosis, the best treatment, or the prognosis. Physicians-in-training often feel uncertain because of inexperience. Un- able to answer a question, they may not recognize the difference between not knowing because of lack of knowledge or because there simply is no an- swer; that is, the critical discovery has yet to be made. But physicians have many resources, and the ethic of medicine authorizes, encourages, and ob- ligates them to consult with colleagues when uncertain and to provide ad- vice when asked. One need not be reluctant to ask for advice. Medicine is a collaborative profession.
Physicians can share their uncertainty with the patient without undermining the trusting relationship. The greater the trust, the easier it is for the patient to handle uncertainty. Uncertainty is a reality of everyday life, and most pa- tients are sufficiently wise to recognize the parallels related to health and illness. Patients can accept uncertainty when their doctors understand their needs, respect their intelligence, and explain carefully. This patient trusted his physician when he suggested the “test of time” for his later epi- sode of chest pain. Here are some other ways to speak with patients about uncertainty:
• For a patient with abdominal pain: “While I’m not certain what’s causing your pain, I don’t believe this is anything of a serious nature. Call me in a few days if it’s not better, sooner if it gets worse. Are you comfortable with that approach?”
• For a patient who is faced with choosing a treatment from a number of difficult choices: “Each choice has some benefits and some risks. This is what I think is the best choice. How do you feel about it?”
We can make choices and take action in the face of uncertainty. In this drama, the patient, his wife, and his physician struggled through the dilemmas to- gether. In this shared undertaking, each identified and acknowledged the uncertainties to the others, made decisions, and took action. Even though there were no guarantees of a good outcome, they made choices. They all recognized that no choice was irrevocable and that decisions could be al- tered as the drama evolved.
Put another way, if we strive for certainty before we take action, we may be- come paralyzed. In practice, a physician faces many points of decision each day. Some require immediate action, but each alternative, if a wrong one, may delay recovery or jeopardize the patient’s well-being. Physicians solve the dilemma by making the best decision they can, trying it out, making ob- servations to test the validity of the decision, and, if need be, altering the decision.
The Minnesota Twins ace pitcher from the 1970s, Dave Goltz, once said, “A pitcher can try to be too fine, or some other people can expect him to be too fine. But nobody is that precise with every pitch. The idea is to use your best stuff and be confident it will work out.”2 Scientist-philosopher Ja- cob Bronowski saw that “errors are inextricably bound up with the nature of human knowledge.”3 To that I add, errors are inextricably bound up with the nature of human behavior and judgments.
Even when there are no technical matters to deal with, no treatment to alter, and no tests to monitor, periodic encounters help to identify and address the pa- tient’s concerns and uncertainties, and that is an important part of patient care. Patients struggle to address their questions and uncertainties, often long af- ter they have gone beyond their ability to do so. Physicians can encourage patients to share their struggle by telling them, “If you can’t figure out what to do about your pain [or your blood sugar, etc.], call me.” Doctors can ac- knowledge to patients that “the hardest part of your illness, I know, is the uncertainty. Let me know when you need help.”
TEACHING ABOUT UNCERTAINTY
I give students this written assignment:
1. Look to your own experience and describe an event in your own life where un- certainty was or is a substantial element. What were the choices? What were the issues? Could you take action despite not knowing for sure all the facts and not having all the data? How did you handle it? What was it like for you? What did you do to deal with the dilemma? What was the outcome?
2. Discuss in a similar way a medical situation from your own experience or that of someone in your family where uncertainty was a prominent element.
3. What do you learn as you reflect on your answers?
In addressing these questions, students have described a variety of situa- tions: choosing a college, choosing a career, moving from one country to another, or dealing with an unplanned pregnancy, a sibling with a brain tu- mor, a mother’s depression, or parents’ divorce. They have learned about “the strength of human character in the face of uncertainty,” that “uncer- tainty… is just a part of life… [and that] an appropriate level of uncer- tainty can actually enhance an experience,” that “in medicine, as in all other aspects of life, no one can be 100 percent sure of any diagnosis, effi- cacy of treatment, or prognosis. Every situation is different, and so we can only make our best educated guesses at what choices are wise and how they will ultimately unfold.” Students have recognized that the uncertainty is an almost universal presence in medical matters.
Dealing with uncertainty is an important part of physicians’ work. De- spite uncertainty regarding diagnosis, treatment, and prognosis, physicians take action. Experience teaches them how to share the uncertainty of ill-ness with patients and families in ways that do not undermine trust and confidence. To strive for certainty and perfection is an admirable and uniquely human task. We need not abandon that goal so long as we recog- nize that imperfection and uncertainty are equally human. The next chap- ter deals with the variety of ways in which patients handle the uncertainty, stress, and losses of illness.