As physicians, we’re pretty good at diagnosis. This hasn’t always been the case. Diagnosis takes not only excellent clinical skills, but a thorough knowledge of the causes and manifestations of human disease, good diagnostic equipment, and an understanding of what these skills and tools can and cannot tell you. But while our diagnostic skills have improved, prognosis has often eluded us.
And yet, what could be more important that prognosis? What could be more important than knowing the probable course of your illness, and how long it may take to kill or maim you? As I sit typing, comfortable in my office chair, physically limited only by my own lack of exercise and poor eating habits, someone is laying in a hospital bed hurting and afraid. He is at a very uncertain time in his young life, and no one can tell him with any certainty what will come next or when. He needs to know his prognosis.
For reasons obvious and otherwise, age affects our approach to treatment. There are probably value judgments involved, but from a practical standpoint, there are things a young body can tolerate that would kill someone older. Prognosis may often elude us, but we know that, in general, an 80 year old is closer to death than a 40 year old. In general. And in general, a 40 year old may be able and willing to tolerate treatments that would kill an older patient.
Knowing the likely course of an illness (not its natural history, but its real-world course when treated) is important not only for ordering one’s affairs but for planning further treatment. If an elderly man breaks a hip, we have to weigh very practical considerations—hip fractures often lead to death due to the complications of immobility, but in some patients, the surgery can be very risky. In a young patient with cancer, there is often more room to be aggressive, but how do we know when to advise someone to stop? When do we tell a patient, “the disease is winning, we can’t stop it, but we can treat the symptoms?”
Sometimes, after a crappy diagnosis, a patient may sign on with hospice and go gently, comfortably, and surrounded by family. Sometimes they feel a need to “fight”, however they may understand that word. But if we are going to help someone fight a dismal prognosis, we’d better be prepared to tell them exactly what that may entail. For example, if I diagnose a young man with widely metastatic colon cancer, one that appears to be hopelessly* advanced, I know that the oncologist will offer them chemotherapy. Depending on the clinical situation, it may be that chemotherapy could extend his life for several months. The patient must be given a choice (but often isn’t): should he focus on symptom management in his last weeks-to-months, or should he focus on extending his life? These two goals are often mutually incompatible. It is my belief—one with out the support of empiric data—that patients are not often given enough information to make this choice. They are not told that the price of extending life by a few months may be horrible pain, a pain that makes them choose between being completely snowed by narcotics or being in agony. They may not be told that blockages in the colon may cause them to vomit their own feces, and that they may need surgery so that the colon drains through a hole or a tube rather than through their mouth. They may not be told that infections, pain, and delirium may keep them in the hospital and prevent them from having any meaningful interaction with their family.
I don’t mean this post to be hopeless, to imply that a terrible diagnosis leaves a person with a binary choice between suffering and death. But we physicians must be willing to tell patients the entire truth, and patients must be willing to understand that truth is not meant to destroy hope, but that hope built on a lie isn’t hope at all.
*Hope is a tricky concept. There is always hope, but as doctors we must temper hope with realism, and tell patients which goals they can “hope” to achieve. These goals may be control of symptoms rather than control of disease.