To the medical establishment, Li is a classic success story. After being diagnosed with esophageal cancer in 2014, the 66-year-old has battled long odds — esophageal cancer has an expected five-year survival rate of less than 30% — to make it six years and counting. As far as his doctors are concerned, he’s “cured.”
But ask Li, and he’ll say he’s a man living in a “broken-down” body. Like many esophageal cancer patients, he experiences periodic narrowings of the esophagus as well as eating difficulties. After his doctor advised him to eat one steamed bun a day to help stretch his esophagus, Li chose to eat three. Even so, he’s had to undergo several dozen procedures to keep the tube from closing.
A few months after Li’s initial surgery, he messaged me out of the blue: “What scares me most is that one day I’ll have no problem eating, then the next day I won’t even be able to swallow water,” he wrote. “Then it’ll really feel like the end of the line, and I’ll think about suicide.”
I’ve spent the past five years conducting sociological research into people’s experiences of illness at a cancer hospital in southern China. I’ve found that in China’s “body-centered” health care system, many medical practitioners tend to focus on the immediate work of saving lives and curing the underlying source of a disease. But the experiences of patients, including Li, offer a reminder that just cutting out a tumor or eradicating cancerous cells isn’t always enough to heal someone. Co-existing with the disease can be a lifelong process — one fraught with pain, quality of life problems, loss of personal identity, and altered social relationships.
After being diagnosed with cancer, many patients say it can feel like they’ve lost control over their lives and futures during the long treatment and recovery process. In interviews, patients describe to me how everything from hair loss to constantly being attached to medical tubes challenged their dignity and self-image, causing a crisis of self.
Take esophageal cancer, for example. Most patients are middle-aged or elderly men; some only recently retired from relatively high social positions. Suddenly they find themselves exposed in front of female health care workers, covered in tubes, and hooked up to colostomy bags. The abrupt loss of their social identity and status can be devastating. Li often uses the phrase “people like me” in his messages. Even years after his initial surgery, he still feels abnormal.
The way cancer damages the personal identity of patients can sometimes cause as much mental pain as physical suffering. Yet under the current “body-centered” paradigm, Chinese hospitals are ill-equipped to heal these mental scars, and the feelings of patients often go ignored.
Part of the problem is a general shortage of medical resources and personnel in China — home to the largest population of aging individuals in the world. This makes it difficult for doctors to accord equal importance to a patient’s mental state and physical condition. During the course of my research, one patient at the hospital took their own life. After the family blamed hospital staff for not carrying out a psychological intervention, a staff member tried to explain the situation: “It’s not like in Western countries, where the doctor spends a long time seeing patients,” he said. “In hospitals overseas, each patient is dealt with by several doctors and nurses. Here, one doctor looks after several patients.”
Indeed, in 2016, the cancer hospital where I did my research received more than 840,000 patient visits — compared with a full-time staff of just over 1,100. When combined with the hospital’s need to support itself financially, the result is an assembly line: Doctors diagnose one patient every few minutes and may see dozens of patients in a single morning. In testing rooms, medical staff hurry patients through the process; in operating rooms, doctors carry out surgery after surgery.
“This is a problem in China. The more operations doctors perform, the more achievements they have and the more efficient they think they are,” the above-mentioned staff member said.
Doctors and nurses often come to view patients as subjects in need of medical intervention, not individuals in need of holistic care. They seldom have the time or patience to explain the patients’ illnesses to family members or even patients themselves in detail.
Once, I witnessed a therapist bring along two trainee nurses to work on and take pictures of a patient’s wound without explaining the process to either the family or the patient. After waiting some time quietly at the patient’s side, one family member finally interjected: “Is the wound not healing well?”
“Of course not,” the therapist replied. “Otherwise they wouldn’t have asked me to come here.”
More broadly, the medical industry’s infatuation with advanced technology is leading many doctors and nurses to privilege high-tech solutions over meeting the psychological needs and feelings of patients. Hospitals buy the latest equipment and technology, while ignoring the need for social work departments or even rooms for psychological counseling. And medical curricula focus on cultivating students’ professional and technical abilities to the neglect of the profession’s human side.
These problems aren’t limited to China. With advances in medical technology and attendant rises in average life expectancy, cancer is now a global health issue, and the question of how to allow patients to live dignified and high-quality lives has become an increasingly important one.
As early as the late 1940s, the World Health Organization defined good health as “a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity.” From the 1970s, many countries have begun advocating a transformation from a “biomedical” to a “biopsychosocial” model of health care, in which person-centered or patient-centered approaches replace the previous body-centered one and the emphasis is on understanding how diseases and their treatments affect a person as a whole.
It’s time for China’s medical establishment to embrace a similar attitude. First, medical personnel must recognize there are multiple dimensions to patients’ suffering, and medical institutions should give just as much attention to meeting patients’ comprehensive needs as they do to improving operation and discharge rates.
As it’s not possible at present to solely rely on the country’s already overstretched medical practitioners to shoulder all these responsibilities, hospitals should consider recruiting more social workers, volunteers, and psychological counselors. And the establishment of interdisciplinary teams involving not just medical practitioners, but also other experts, is vital if the country is to improve patients’ experiences of illness.
Second, the medical system needs to take into account the long-term rehabilitation needs of patients once they leave the hospital. After he was discharged, Li continued to fret constantly about his unknown future, and would only calm down if his physical results looked encouraging: “At least I’m guaranteed (to survive) this year,” he would say.
Patients like Li need continual medical treatment and care, as well as broader social support. This requires better collaboration between hospitals and social organizations, as well as new services to help reintegrate critically ill patients back into their community.
Caring is just as important as curing. The purpose of medical treatment isn’t just to restore patients’ basic bodily functions to the point where they can survive, but also to maintain their well-being and sense of their life’s meaning. Failing that, patients won’t be able to envision a future, even after their tumor is removed.
Translator: David Ball; editors: Cai Yiwen and Kilian O’Donnell; portrait artist: Wang Zhenhao.
(Header image: View Stock/People Visual)