Jun-Jun Jia , Jia Luo , Jing Shu , Shu-Sen Zheng , *

a Division of Hepatobiliary and Pancreatic Surgery, Department of Surgery, the First Affiliated Hospital, Zhejiang University School of Medicine, Hangzhou 310 0 03, China

b NHC Key Laboratory of Combined Multi-organ Transplantation, Zhejiang University, Hangzhou 310 0 03, China

c Division of ICU Department, Zhejiang Sian International Hospital, Jiaxing 3140 0 0, China

Daweiwasinintensivecareunitonaventilator.Hewasdeclaredbraindeathafteratrafficaccident.Atvisitingtime,hisyounger brotherDayongtoldmetheirfinaldecisiontogiveupthesubsequent treatment.“Wedon’thaveenoughmoneyandmedicalinsurance,we can’taffordfurthertreatment”,hesaid.

“Whataboutorgandonation?Maybeitisachancetokeephis heartbeatingwhilehischildisgrowingup”,Isaidtentatively.Along silence.Theylefttheward.Wecouldonlyhearweepingechoedinthe corridor.

Thenextday,DayongandDawei’swifecametoinquireorgandonation.Igavethewifealeafletaboutorgandonation,“Lastmonth,apatientsuccessfullydonatedhisliver,heart,kidneysandcorneas,whichsavedmanypatients.Thefamilyregardeditasagreatdecision tocontinuehislife.” Tearflewonherface,“Yes,wewanttothink aboutitseriously,pleasehelpus.”

Afewhourslater,XiaoYang,aRedCrossCoordinator,cametothe hospitalpunctually.Herjobwastoexplainthemeaningoforgandonationandintroducepoliciesofdonation.“Everythinggoeswell.They agreetodonate.” XiaoYangcametomyofficeafteranhour’scommunicationwithDawei’swifeandhisbrotherDayong.Aweeklater,XiaoYangsentmeamessage＂Daweihascompletedthedonation.The heartrecipientisa40-year-oldteacher.Heisrecoveringwell.Therecipientsofthetwokidneyshavegoodurineoutputaftersurgery.＂

Twoyearslater,XiaoYangsentmeanaudioofheartbeat,the dullandheavywhistlingsoundundertheDopplerprobe.＂Doctor,the heartrecipientcametothehospitalforafollow-up.ItisDawei’s heart,canyouhearthat?Irecordedtheheartbeat,becausethepatientsaidhewantedDawei’schildtolistentohisfather’sheartbeat,andthepatientwantedtothankDawei’sfamily.＂WhenIhungupthe phone,Ionceagainfeltgreatwonderatthewayslifecancarryon.

At present, patients with severe brain trauma in traffic accidents are the main source of organ donation [1] . Most patients in traffic accidents are young adults, and their families are desperate and helpless during the treatment. They are anxious because of the uncertain prognosis; they also feel uncertain and are saddened by the prospect of a broken family in the future. Doctors often feel powerless for the treatment of severe trauma. Breaking such bad news is always difficult for doctors. Therefore, many doctors will not try to communicate about organ donation because of their own sense of powerlessness and guilt after brain death of the patient.

Donation after brain death may be the most difficult topic for patient-physician communication. Under the influence of traditional Chinese culture that requires keeping the body intact after death, the public have not yet widely accepted the concept of organ donation after brain death. Narrative medicine can play an efficient auxiliary role in such patient-physician communication.

Narrative medicine and communication

In 2001, Professor Rita Charon of Columbia University proposed the concept of narrative medicine [2] , ＂Narrative medicine fortifies clinical practice with the narrative competence to recognize,absorb, metabolize, interpret, and be moved by the stories of illness, which is proposed as a model for humane and effective medical practice＂. In 2015, Professor Li-Ping Guo of Peking University translated Charon’s bookNarrativeMedicine:HonoringtheStoriesof

Illnessinto Chinese and introduced narrative medicine into China.The initial application of narrative medicine was reflective writing which aims to improve self-reflection of young doctors and to strengthen the humane side in diagnosis and treatment [ 3 , 4 ].Some doctors have already experienced the benefits of narrative medicine in their communication with patients. Therefore narrative medicine is proposed to be used in difficult patient-physician communication such as organ donation [5] .

In Italy in 2017, there were 2738 death assessments and organ donation communications, and 28.7% of family members opposed organ donation after death. After this research, it is suggested in Italy that narrative medicine should be used in organ donation communication to reduce family members’ opposition to organ donation after death [6] .

The three movements of narrative medicine and organ donation

Charon names attention, representation and affiliation as the three movements of narrative medicine [7] . The core of clinical work is to pay attention to patients, allowing patients to talk freely while doctors listen professionally. Then use ＂diagnostics＂ thinking to re-understand what you hear, see and perceive, and bring meaning to diagnosis and treatment. The ＂schicksalsgemeinschaft＂ (affiliation) forms after paying attention to patients’ stories and representing them in some form.

Attention is an important concept in narrative medicine; doctors should not only listen carefully to diagnose related symptoms,but also consider the patient’s social attributes, family relationships, parental family situation, partner intimacy, children’s ages,education level and many other factors. This kind of in-depth listening extensively collects various characteristics and details of the patient’s family, and can establish trust between patients and doctors based on repeated and extensive communication.

In addition, the doctor should attempt to represent and reconstruct all the mental states and emotional reactions of family on the time axis before and after the accident happened. This is another important concept of narrative medicine: representation.Representation is an important ability to have to accurately evaluate the feasibility of organ donation. Doctors should know how to find effective ways to communicate with family members, choose effective communication modes, and use language that patients understand.

The patient’s physician needs not necessarily to be the chief of medical staff, just the resident or attending doctor directing the transplant process. It also can be other hospital personnel who have been in close contact with the family and have earned their trust, so as to form an affiliation, a “schicksalsgemeinschaft” in which doctors and patients believe that they are an alliance to fight against the disease. Attention, representation and affiliation,the three key points of narrative medicine, can help doctors assess whether they are properly prepared to communicate with the patient’s family about organ donation.

Empathy in organ donation

Guo summed up the three focal points of narrative medicine:relationality, empathy and emotions (especially negative emotions).Among them, she regards empathy as the key focal point [8] . Narrative medicine emphasizes the effect of the interaction between doctors and patients. Doctors must put themselves into others’ situations, allowing them to understand how best to treat problems from the patient’s standpoint.

Before initiating a conversation with the family about organ donation, a clinician should secure a quiet environment with limited interruptions, silence the phone, have a box of facial tissues within reach, and be able to maintain eye contact. The doctor must be able to feel the patients’ emotions while giving the family members sufficient time to consider their decision. During this communication process, giving an example of a previous patient who had successfully donated organs is an ideal application of narrative medicine. When the brain is exposed to new concepts or situations, it takes time to understand theoretical information such as policies and procedures. A story or scenario is a useful way to convey this information, especially when the case is comparable;this allows the family to substitute themselves into the roles in the story.

Four relationships of narrative medicine and organ donation

There are four relationships in narrative medicine: doctors and patients, doctors themselves, doctors and colleagues, doctors and society [9] . In the four relationships, the doctor-patient relationship is the most important. If doctors and patients believe that they are allies fighting against the disease (“schicksalsgemeinschaft”) and need to cooperate and trust each other, then such a relationship will bring patients a better clinical outcome and a better illness experience, and a greater professional satisfaction to doctors. In the case of organ donation, it allies doctor and the family working together to make the patient continue to “l(fā)ive” in a different way.

In applying these four narrative medicine relationships in the context of this difficult communication, doctors must emphasize the importance of organ donation, maintain empathy with the patient’s family from beginning to the end, and use a relevant narrative of organ donation. Using well-constructed case narratives and applying suitable methodology are useful for resolving difficult communications.

The organ donation is affected under the oriental cultural tradition to keep the body intact, so we need to achieve a breakthrough in an individual case, then to promote stories of other successful cases. From that point, narrative medical stories disseminate the meaning of organ donation to the public. In this way, using word of mouth from the family to spread the positive outcomes and significance of organ donation, the medical narrative breaks through the technical and emotional barriers in the chain that moves from selfpropagation to interpersonal propagation to organizational propagation to public propagation. Another important aspect of narrative medicine is the psychological support, which provides the family the hope for the future. Regardless of the technical aspects of these communications, doctors who fully agree with and support organ donation programs will be best able to communicate effectively,concretely, rigorously, and flexibly.

Prospect of narrative medicine in the application of organ donation

Narrative medicine is an effective tool to instill “humanness”into medical education and clinical practice. It requires doctors to respect the subjective experience of patients and understand their cultural background in medical practice activities. Narrative medicine attaches importance to doctors’ empathy for patients,emphasizes doctors’ reflection on their own diagnosis and treatment, and urges medicine to return to its humanistic roots [10] .Narrative medicine is conducive to cultivating doctors’ physicianpatient communication skills. Introducing methods and values with a story-based approach to medicine is complementary with evidence-based medicine, and bolsters the humanity of clinical decisions [ 11 , 12 ].

Narrative medicine, along with the word-of-mouth dissemination of success stories and the spread of methodology among doctors, will lead to the discovery of more practical methods for communication about organ donation, allowing for greater incorporation of humanistic aspects into medical communication between physicians and patients, which may also increase the success of these organ donation conversations.

Acknowledgments

None.

CRediTauthorshipcontributionstatement

Jun-JunJia:Funding acquisition, Investigation, Writing - original draft.JiaLuo:Investigation, Writing - original draft.JingShu:Conceptualization, Writing - review & editing.Shu-SenZheng:Conceptualization, Project administration, Supervision, Writing -review & editing.

Funding

This study was supported by grants from the Zhejiang Natural Science Foundation (LQ20H030 0 05), and the Zhejiang Health Technology Project (2019RC153 and 2020KY126).

Ethicalapproval

Not needed.

Competinginterest

No benefits in any form have been received or will be received from a commercial party related directly or indirectly to the subject of this article.