Bringing in the Bedside Manner

“I wasn’t scared of dying, but of not being able to go to my daughter’s wedding,” he later told oncologist Lin Xiaoji. He knew that he might only have months left if a bone marrow donor was not found in time. 　

Liu did live to see his daughter married, but a donor was never found. Before he died, he visited Lin several times, often talking about his experience of being a soldier. He became calmer and accepted that a donor might not be found. 　

“I hope I can die with dignity, just as I was born with dignity,” he told Lin. Lin suggested that he could become an organ donor, and before he died, Liu posed for a photo with his doctors and nurses, holding his organ donor certificate. 　

“This approach turns people into story tellers,” Lin told NewsChina. In the past two years, Lin recorded the oral history of 36 terminal patients and during the process, he saw how they were able to let go of pent-up emotions as they thought about life and death. 　

What Lin is doing is described as “narrative medicine.” Started in 2001 by Rita Charon, an internal medicine professor at Columbia University, narrative medicine values the humanity in medicine and encourages doctors to learn more about patients’ experiences by hearing, recording and responding to their stories. According to the Chinese edition of Charon’s 2005 book Narrative Medicine: Honoring the Stories of Illness, Charon defined narrative medicine as the ability to respond to people’s pain. 　

“The most serious ending of a disease is death, but if a patient has looked through it, he/she will no longer feel pain... The grief from a disease is subjective and psychological, which may either last till after the disease is cured or is relieved while the patient fights their illness... Therefore, narrative medicine is closely related to humanity,” Han Qide, an academician at the Chinese 

Academy of Sciences, wrote in the first issue of the Chinese journal Narrative Medicine in July 2018. The journal launched three years after Guo Liping, deputy director of the School of Health Humanity at Peking University, translated Charon’s book and introduced it to China. According to Guo, narrative medicine and medical humanities will definitely 　

become more important as China’s population ages, with consequent higher demands for chronic disease treatment. 　

Medical students were trained to value science most, and seldom truly communicated with patients. For a long time, patients accepted the view that they were just bodies with symptoms, according to doctors, and just recipients of tests and experiments. 　

These ideas have been increasingly challenged globally since the 1970s, particularly concerning human rights. Engel, for example, proposed in 1977 that modern medicine should shift from pure biomedicine to one that includes human and social elements. He said that medicine serves people, who are equally psychological and biological beings. 　

Charon went further, decisively opposing pure “scientific medicine” which she argued cannot help patients find the significance of fighting a disease, thus potentially weakening the effect of treatment. 　

During an interview with Guo Liping, Charon emphasized that storytelling and listening shortens the distance between doctors and patients and enables doctors to improve treatment and medical care by learning more about how the patients have been suffering. She told Guo that narrative medicine demands doctors hear, empathize and respond to patients’ stories, and they should find this information helpful for their treatment. 　

Charon’s theories impressed Guo, as narrative medicine or hospice care is still marginalized in China. She told NewsChina that medical humanities – bringing in interdisciplinary approaches from other subjects to provide other perspectives to medicine – was discussed in China in the 1980s, but never received wide attention. “We [humanities teachers] went to medical schools to give ethics lectures in the 1990s, only to find that some tutors told their students not to take the lectures seriously, since they were ‘not important,’” she said. 　

Journalist Ling Zhijun wrote of his experience when he was diagnosed with cancer. In his 2012 book Records of Rebirth, Ling described how he suffered from “cold, inhuman treatment.” “I spent 300 yuan (US$45) to register to see a top doctor, and after a three-hour wait, I finally met him for a few minutes before he went off duty,” he wrote. “I tried hard to tell him my symptoms, but he showed no interest. Instead, he turned to his young students and started to interpret my MRI report... It was like I spent a ton of money visiting the Egyptian pyramids, only to find the experienced tour guide totally ignored me after he stuffed my money in his pocket, then turned to tell his son how to earn a living this way.” 　

Such disappointment and dissatisfaction is on the rise among patients when medical resources are unevenly distributed in China and there is a huge shortage of experienced doctors. Chinese patients are accustomed to lining up outside a top-tier hospital for just a few minutes face-time with a doctor. They joke that all doctors do is write instructions for tests, then write prescriptions based on those tests. 　

“Storytelling and showing a human touch are not only new requirements for doctors, but they are a new way of dealing with real-world problems,” Guo said at the first Chinese forum on narrative medicine in November 2011. Doctor-patient tension is a particular problem in China, sometimes with fatal consequences. 　

According to an article by Wang Fangsong, former director of the municipal healthcare bureau of Yangzhou, Jiangsu Province, 80 percent of local medical disputes were caused by poor doctor-patient communication, and it played a role in the remaining 20 percent. In 2012, incomplete statistics released by the former Ministry of Health showed that China saw 17,243 violent medical disputes in 2010, over 40 percent more than in the previous five years. In 2015, Chinese lawmakers put violent medical disputes into the latest revision of the Criminal Law. 　

“We urged that perpetrating violence toward medical staff should be criminalized to protect health workers, but internally, we must give doctors more training in how to be humane,” said Ling Feng, chief neurologist at Xuanwu Hospital, Capital Medical University. 　

“As modern medicine has enabled doctors to be dominant over patients in terms of medical knowledge, it is more urgent and necessary for them to fill in the information gap by communicating and learning more about their patients,” Guo said, adding that “to cure sometimes, to relieve often and to comfort always” (the inscription on the tomb of American doctor Edward Livingston Trudeau) will always remain true. 　

Following his father’s death, Lin organized Wenzhou’s first volunteer team for hospice care, during which he learned about taking oral histories from patients after reading about Michelle Winslow, a teacher in adult palliative and end-of-life care at the UK-based University of Sheffield. Winslow has been recording oral histories for terminal patients since 2007. 　

According to Winslow, talking about their lives helps patients raise their self-esteem and sense of worth. They attach more meaning to their life experiences. Meanwhile, it enables healthcare professionals to gain a deeper understanding of and acknowledge the person beyond their illness. In an email to NewsChina, Winslow revealed that her team has completed more than 400 interviews with terminal patients over the past 12 years and the Sheffield model for the oral history project is being practiced elsewhere in England and Northern Ireland.　

Lin’s experience at the hospice showed him that many patients like to talk about their lives. He started recording patients’ stories in 2017, dividing the oral histories into three parts: the highlights of patients’ lives, the impact of the disease on them, including on the body, mind, social activities, family relationships, views on life and death, and religious beliefs (if any), and comments on their medical treatment and care. 　

At the very beginning, Lin had no idea about narrative medicine. But he later found that recording these patients’ stories conformed to the theories and values of the practice. 　

Neurologist Ling Feng was another pioneer who proposed what he called “life ward rounds,” or what is referred to as “bedside manner” in the West. Different from ordinary rounds in which doctors only pay attention to a patient’s medications, vital signs and changes in symptoms, doctors on Ling’s wards had to discuss any medical problems with patients and talk about life and family with them. Patients feel closer to doctors this way.　

Ling learned about narrative medicine at the 2011 forum, where he was deeply impressed by the “storytelling ability” that narrative medicine values – training a doctor to understand, empathize and respond to the stories of patients just like the interaction between readers and works of literature. Since then, he demanded that all the doctors in his department, including interns and postgraduates, had to write one narrative case of an illness every month, including a patient’s feelings and comments. He found that writing up cases like this meant that doctors became more understanding and caring, as well as reconsider their treatment according to the details the patients told them. 　

“During my early days as a doctor, I was frivolous and arrogant, and often crossed my legs and even smoked when I talked with my patients... Indifference and arrogance may have defined many doctors then,” Jiao Liqun, another neurosurgeon at Ling’s hospital and former student of Ling, wrote in an annual report. “But these qualities have disappeared from me over the past 10 years [after I began to write narrative cases of illness]. I am now able to keep calm and patient despite the torrent of questions from patients, even if they extend my work day,” he wrote. 　

“Although there has been no systematic or large-scale survey to prove the positive correlation between narrative medicine and the patient-doctor relationship, some previous research has indicated that it helps improve the relationship,” Guo Liping told NewsChina. 　

For example, she said, a 2008 survey on the literature and medicine program run by the University of Southern Maine showed that through literature study, the participants’ empathy for patients rose by 79 percent and their communication skills rose by 58 percent. 　

Doctors are also beneficiaries, Guo said. She told NewsChina that recording patients’ stories offers doctors an opportunity to reflect on themselves. “Many doctors suffer from depression due to the above-average pressure they are under. Narrative medicine helps them face some unfairness and frustrations in life and consider why they want to be a doctor and how to maintain their professional ethics,” she said. 　

“I don’t think it’s feasible in big hospitals, especially in outpatient clinics which are always overcrowded with patients. Given their situation, doctors truly don’t have time to hear stories,” one anonymous physician at a top-tier hospital in Zhejiang Province told NewsChina. 　

Lu Xia, a neurosurgeon at Xuanwu Hospital, agreed. “Nearly all outpatient doctors are bombarded by patient inquires. Such intensity exhausts people’s kindness and brings out their rational and cold side,” he told NewsChina. 　

Although Lu said he does not interrupt patients unless they go over three minutes, he emphasized that few doctors could do the same if they had not received the same training he had. 　

He cited a study in the American journal Annals of Internal Medicine as saying that doctors will interrupt a patient after 18 seconds on average, although patients need an average of 60 seconds to say what they need to. The 42-second gap puts the patients on the two extremes of satisfaction and dissatisfaction.　

“Patients will put many labels on a doctor they believe to be good, such as skilled, caring, courteous, humorous, etc, but doctors don’t have an agreed standard for a ‘good doctor,’” Xia said. “Humanity and science are contradictory by nature and it is personal understanding and choice that determines how a doctor balances them.”　

Guo Liping believes this is another major reason behind China’s slow development of narrative medicine. “The standard of Chinese doctors is really uneven which causes them to have very different understandings of narrative medicine,” she said. 　

According to Charon, narrative medicine is not merely hearing patients, but requires a great ability to write, understand and respond. Her narrative medicine curriculum for Columbia Medical School includes literature, narrative ethics and story-telling. In the US, around half of medical colleges and schools have designated narrative medicine as a compulsory course, while in China, only one medical college has it as an option. 　

According to academician Han Qide, community hospitals and general practitioners are more suited to practice narrative medicine, compared to outpatient doctors in big hospitals, since they have more opportunities and time to be with patients. 　

However, few lower-level hospitals or individual doctors are able to do it. From this perspective, narrative medicine should be institutionally supported following sweeping medical reforms, including resource distribution, construction of community clinics and hospitals, family doctor training and medical education. Yet, Han said there is no longer time to wait for such ideal conditions. “Despite the current [poor] conditions, narrative medicine should be launched and greatly promoted right now,” he said