PAIN versus SUFFERING?

“About suffering they were never
wrong,
The old masters: how well they
understood
Its human position; how it takes place
While someone else is eating or
opening a window or just walking
dully along.”
-- W. H. Auden 1907-73: “Musee des Beaux Arts” (1940)

A good physician has four central tasks: ascertain what the ailment is (diagnosis), get to the bottom of why it occurred (cause), prescribe a course of action (treatment), and, related to treatment, forecast the consequences (prognosis). But there is a danger in isolating this chronology from a fifth, and often overlooked, component—the suffering person. The traditional, and fundamentally flawed, assumption is that, while people may be different, diseases are static entities. In other words, lymphoma is lymphoma, no matter who has it. But as any doctor worth her salt knows, the sufferer and illness aren’t discrete entities, and to treat them as such is tantamount to throwing out the baby with the bathwater. As an example of this, I would cite an incident from my own cancer experience.

During the course of my chemotherapy, my physician, Dr. Asra Ahmed, would regularly consult with her boss, the world renowned lymphoma expert, Dr. Mark Kaminski. At one point, because of some extremely high AZT/liver levels in my blood work, and because of the complication of my having hepititis C, she asked Kaminski about lowering my chemo dose. His response was that (and he may have been right) based on my history and past blood enzyme levels, I could take the toxic hammering. Now, I don’t know if my current state of health and continuing remission can be attributed to Dr. Ahmed’s decision, but I would say what she elected to do was based on her medical intution, as well as the experiential component of the doctor-patient relationship. She lowered the chemo dosage as a kindness to my gizzard, err, liver, based on a purely subjective equation that weighed the potential future damage to my liver against the success of the chemo in eradicating the cancer. To my mind, this amounted to a holistic decision. In a sense, she took the calculated risk of, at once, keeping me off the transplant list and eliminating the cancer. Good job, Asra. My point is that the dynamic between disease, sufferer, and I would argue, doctor, is always unique and unprecedented.

Regarding palliation, the treatment of disease and alleviation of suffering can’t be separated. As I recently told a friend, a physician can be a good doctor, but a poor pain manager. The treatment of illness requires more than knowing the nature of the disease and the science that accounts for it; it also demands a compassionate understanding of the person who is ill. Again, consider another example from my own experience. One of the paradoxes of modern medicine is that suffering is commonly the result of the treatment rather than the disease. In brief, I found there are two components to cancer suffering, pain related to symptoms, that which drives you to the doctor, and pain related to the treatment, that which results from the side-effects of chemo (which I’ve discussed in some detail at other times in this blog). Regarding treatment suffering, cancer patients are typically given palliative medications should they experience specific discomfort, like bone, nerve, or tumor pain. But aside from the specific physical pains, there is an existential pain, a general feeling of feeling crappy about feeling crappy, if that makes any sense.

Key here, is my struggle to name exactly what kind of discomfort I experienced. This is where Eric J. Cassell’s definition of suffering as “the state of severe distress associated with events that threaten the intactness of person” seems apt. He found that while there are many references to pain in medical and social science literature, there is a dearth of information on suffering. Because suffering is associated with mind in the traditional Descartian paradigm, Cassell writes, “as long as the mind-body dichotomy is accepted, suffering is either subjective and thus not truly “real”—not within medicine’s domain—or identified exclusively with bodily pain.” It’s no accident that nurses and physician’s assistants would invariably ask, ‘where, specifically, is your pain? To say ‘I’m suffering,’ rather than I’m in pain would, no doubt, draw a blank, and affect a return to the issue of specific pain. Which is why I always had a readily available laundry list of specific pains, should I encounter a skeptical nurse (of which there are many) trying to disabuse me of what she considered to be my somatic misconceptions.

In my case, I made the decision to use pain--don't call them suffering--meds, which I self-monitored in a controlled way, as a way of allowing myself a distraction from the general malaise which so often accompanies prolonged illness. My doctor could have questioned this decision. She might have staked out a moral high ground to which I could only aspire. She didn’t, and I’m glad. There is no greater mistake a doctor can make than to assume a knowledge of someone else’s pain based on cruel and barbaric assumptions related to intellectual and moral paternalism.

Cassell’s influential book, “The Nature of Suffering And The Goals Of Medicine” (1991) makes the case that the task of medicine in the 21st century is to learn more about the relationship between healing and personhood. Focusing on the historically intractable assumption that the subject is unknowable, Cassell contends that the similarity of our ideas, language, customs, and cultural beliefs allows us to know much more about who we are as individual persons than is commonly thought. He argues that just as the focus of the 19th and 20th centuries was on the “power of the body,” our future aim should be on the person who is sick as much as the sick person. Cassell believes that the modern prejudice that all knowledge apart from scientifically arrived at facts is not real, has delegated any subjective inquiry into what individual suffering entails as invalid.

Cassell writes: “Our perceptions of other persons are not based on elemental facts alone but also on values and aesthetic criteria….[v]alues are not mere prejudices but a kind of information that can be consistently and reliably employed in our knowledge of persons. Were it not so there would be no stability in our personal or social lives. Aesthetic criteria, which at first might seem foreign to medicine, are also essential for knowing whole persons within space and across time. Values and aesthetics raise the specter of subjectivity so worrisome to medicine and medical science.”

What Cassell emphasizes is that experiential knowledge, as much as scientific expertise, must act in concert if the physician is to be successful in relieving pain and suffering. If passion and emotion must enter into the equation, so be it. It bears remembering that people treat people, and that machines, medicines, and chemical remedies can never provide that central ingredient in the alleviation of suffering—empathetic understanding.