Worth Reading: The Illness Narratives—Suffering, Healing, and the Human Condition

The Fudan-Harvard Medical Anthropology Research Center once carried out a series of studies in medical anthropology and published some valuable works. The Illness Narratives: Suffering, Healing, and the Human Condition, by Dr. Arthur Kleinman, is one of them. After reading it I reflected on many things I have experienced in my work and benefited greatly.

How to embody a humanistic spirit in medical care is, I believe, a question every doctor asks. We keep thinking we may be doing well, but in fact we may be doing far too little. Because we have not truly thought through this issue, and lack the knowledge and skills of clinical technique and artistry, our care for patients and their families looks clumsy and sometimes even provokes their resentment rather than bringing comfort.

Dr. Kleinman recounts something from when he was first an intern. He met a seven-year-old girl with severe full-body burns; every day she had to endure painful whirlpool-bath treatments in which burned flesh was removed from her open wounds. It was an agonizing procedure, and she would shriek and fight the staff.

Dr. Kleinman wanted to help her, calm her emotions, and settle her down. He tried every way to distract the little patient—talking about her family and her school—hoping to quiet her, but to little effect; the child simply could not calm down.

Feeling clumsy and helpless, just then he noticed that the little girl herself was asking him to listen to her, to let her tell him how she endured the pain and to let him know what she felt during this terrible treatment. So Dr. Kleinman listened to her account; as she spoke, she grew quiet and gradually could bear the pain of debridement.

This experience made Dr. Kleinman realize that it is possible to talk with patients about their lived experience of illness, and that witnessing and helping them manage that experience has practical value.

It also made me think of my own patients, sunk in pain and despair from which they cannot escape. I have always wanted to lift them up with positive, optimistic words, even writing numerous articles to influence them, but often the opposite happens and my effect on them is negligible.

Because the methods I choose are, fundamentally, things said from my standpoint rather than the patient's. I should instead listen to how patients struggle to throw off these physical and mental afflictions, and help them manage their own experience of overcoming bodily and psychic suffering.

In The Illness Narratives, Dr. Kleinman also discusses the relationship between illness and culture. For example, many psychiatric conditions carry a deeply entrenched stigma in certain peoples.

We Chinese habitually call people with mental illness "crazy"; once a person is labeled "crazy," it affects not only them but casts a shadow over the entire family.

When Chinese families arrange marriages, they look into the background of the prospective spouse's family; upon learning that some family member is "crazy," a once-promising match often falls through. Hence many families with a mentally ill member deliberately conceal it and are unwilling to seek hospital care. Even when the patient dies, the family fabricates a cause of death unrelated to the mental illness to cover it up.

With its unique perspective that combines anthropology and medicine, this book made me realize that a physician treating patients clinically cannot be merely a worker on a mechanical medical assembly line. We need a skillful art of consultation in order to help patients to the fullest. That art must be built on a deep understanding of the various cultural backgrounds of human society; it cannot be achieved by a few empty words about caring for patients.

Often we recommend a treatment plan to patients from the doctor's standpoint, assuming it suits them, without considering the economic, social, and psychological factors the patient faces.

I often need to talk with patients, guiding them to understand their illness and choose treatment; sometimes I inevitably advise them what to do, and such advice sometimes goes against their own wishes. At such moments I want patients and families, in the name of obeying science, to make the choice I expect—but in fact I should give more weight to the patient's own wishes.

Recently I persuaded a lymphoma patient to adopt an integrated Chinese-Western treatment. Deep down, she actually only wanted TCM, because she had previously undergone three years of my pure TCM treatment and felt the effect was acceptable, her quality of life assured, and she could still care for her daughter.

But from my standpoint I advised integration. After she took up Western treatment, the side effects were enormous and seriously harmed her quality of life; the suffering made her strongly wish to stop the Western treatment. This led me to reflect that my advice had overweighted so-called scientific rigor and overlooked the intrinsic reasonableness of the patient's own choice.

If a doctor can understand the patient from the patient's standpoint, while having deep insight into the social factors behind illness, then in the consultation he will resonate more with the patient. Such a doctor earns far better adherence, and the effect of treating—or comforting—the patient is much better.

Most doctors treat a disease as just that—a disease—without considering the other sufferings patients endure after falling ill. It is hard for us to imagine the agonizing, stigmatizing emotional journey of a syphilis or AIDS patient, or the immense psychological burden of a breast-cancer patient after a mastectomy.

The treatment plans we hand out are cold and hard to accept, yet we strongly recommend some regimen and try to talk patients out of their own views. Such consultation is certainly no art; it can only drive patients into deeper despair. We should learn to listen to patients and learn to see their treatment from the patient's point of view.

This book made me realize that being a doctor is no easy thing. Female breast-cancer patients often hope I can find a way to save their breasts; they are terrified of going into the operating room, and equally terrified of a life after losing a breast.

There was one breast-cancer patient whom it took me nearly a whole year to persuade to accept breast surgery—before that she would rather have tried guasha (scraping) than an operation; only after scraping made her breast tumor rapidly enlarge and multiply did she realize the path was a dead end. She finally entered the operating room and received comprehensive rehabilitation afterward.

Reading The Illness Narratives, I wondered whether I might have had a better art of communication, more effectively dispelling her fear of treatment. The lecturing-style communication I used was plainly a failure, failing to help her build a way to resist fear. Many doctors are even less capable than I in this regard, which is why so many patients, denied proper help by their doctors, make regrettable decisions.

Dr. Kleinman intended this book mainly for healthcare workers who treat patients with chronic disease; I believe most of those treating chronic conditions such as cancer, diabetes, depression, and COPD can learn something from it.