The concept of narrative evidence-based medicine and shared decision-making in traditional Chinese medical practice

Wei Mu, Hong-Cai Shang, Xu-Fang Gu, Li Zhang, Yan-Fen Li, Jie Li, Rui-Hua Wang, Yu-Hong Huang, , Bao-He Wang,

1Department of Clinical Pharmacology, Second Affiliated Hospital of Tianjin University of Traditional Chinese Medicine,Tianjin, China. 2The second Affiliated Hospital of Tianjin University of Traditional Chinese Medicine, Cardiovascular Department, Tianjin, China. 3Key Laboratory of Traditional Chinese Medical Sciences of Dongzhimen Hospital of Beijing University of Chinese Medicine, Beijing, China.

Evidence-based medicine, research evidence and patient values

In 1992, the working group of renowned internal scientists David Sackett and Gordon Guyatt, one of the co-founders of clinical epidemiology at McMaster university in Canada, formalized the concept of evidence-based medicine for the first time on the basis of long-term clinical epidemiological practice. In the same year, British Cochrane Center was established in Oxford and named after Dr. Archie Cochrane. In 1993,the International Cochrane Collaboration was formally established in Oxford, England with the purpose of producing, maintaining, disseminating and updating systematic reviews in the medical field and providing the best evidence for evidence-based medicine practice[1].

In 2002, Professor Gorden Guyatt published a paper entitled “Physicians’ and patients’ choices in evidence based practice: evidence does not make decisions,people do” detailing ways to integrate patient values in evidence-based clinical decision making. In the paper,professor Gorden Guyatt pointed out that clinical decisions should first take into account the patient’s clinical performance and physical condition. Then adjust the individual treatment based on the effectiveness and efficiency of different clinical research evidence, which is called quantitative decision-making basis. The third step, combined with the patient's choice, the clinician need to consider the possible outcomes of various treatments, and the outcome which the patient's preferred treatment should be considered. Finally, clinicians need to use the clinical experience and skills to integrate the above information, recommending the most suitable and best suited treatment plan for their patients [2].

In the third edition of “evidence-based medicine:how to practice and teach”, published in 2005,evidence-based medicine is defined as a science using the best available research evidence carefully,accurately and wisely to develop therapeutic measures for individual patients [3]. In this textbook, it is clearly stated that practicing EBM needs to combine the clinician’s individual clinical experience, the best external evidence obtained through systematic retrieval,the patient’s own values and medical environment.Since each patient’s treatment choices, concerns and expectations is different, patient-centered medical decisions should incorporate patient values [3].

Narrative medicine, cases and individual patient stories

Narrative medicine is the ability to understand,interpret and respond to others’ stories and dilemmas profoundly. Its purpose is to build the clinician’s narrative abilities and help them improve their sympathy, professionalism, trusting and self-reflection in medical activities. The concept of narrative medicine was originally published in 2001 by Charon,a professor at Columbia university in the Annals of Internal Medicine [4]. The article also introduced her personal experience of using narrative writing to understand patients to the maximum extent, given compassion and shared clinical decision-making experiences with patients. In the same year, Charon published a book entitled “Narrative medicine: a model for empathy, reflection, profession, and trust” in the Journal of the American Medical Association (JAMA),defining the theoretical framework of narrative medicine. She reiterated that the core of narrative medicine lies in “listening to the patient’s story” [5].

The emergence of narrative medicine as a medical humanistic attribute is a tribute to the“bio-psycho-social” medical model since the 1970s.The practice of writing parallel medical records is the clinical procedures and evaluation indicators of medical humanities [6]. Parallel medical records refer to the clinical notes of patients suffering stories recorded in non-technical languages, in addition to the standard cases of medical practice. The dual medical writing with standard medical records and parallel medical records record disease from objective and subjective, disease and illness, biological and social psychology, and emotional behavior, thus supplementing the missing feelings about physical and psychological changes and experiences of the treatment.

The parallel medical record paradigm in narrative medicine provides a way to obtain patient’s subjective experience and feelings. This approach, along with other qualitative research methods, is characterized by deeply recognizing the disease and treatment from their perspective. This not only help to know the patient’s value orientation, but the true individual story can also be used as a reference for clinical decisions,that is, qualitative decision-making evidence.

The problems of TCM clinical decision-making model, empirical basis for decision-making, the absence of main decision-making patient

In April 2013, four Chinese medical databases were systematically searched with the keywords of “doctor’s decision-making basis” and “patient participation decision-making”. Finally, systematic reviews of 5 cross-sectional studies (involving 2897 physicians and 834 patients) [7-12]. The results showed that: (1) the decision-making of doctors were mainly based on professional books, personal experience, guideline consensus and superiors’ opinions, which seldom considered patient’s wishes and appeals; (2) more than 90% of patients wanted to participate in decision-making, 63% of doctors thought that it was difficult to make common decisions with patients; (3)the patient’s evaluation for the decision is:participation, information sharing, satisfaction as well as the doctor-patient communication is poor.

The results of the systematic review confirm the fact that many doctors now complain that they spend a great deal of time and energy on answering patients’questions every day. This reflects precisely the misunderstanding of medical occupations and the shortcomings of medical work. The repeated medical incidents in various parts of the country in recent years is largely the result of “paternalistic” decision-making,which lack effective communication between patients and their patients [7].

It is necessary to base the scientific evidence and human will in medical decision-making. Practicing shared decision-making of doctors and patients in clinical practice of TCM is an inherent requirement of medical ethics and medical humanities practice, which is consistent with the concept of “patient-centered”medical service.

shared decision-making making and related initiatives

Chinese medicine theory, evidence-based medicine and narrative medicine base on common theoretical foundation. TCM theory requires that doctors should be good at observing the personality and suffering of patients and attach importance to education,communication and cooperation reflected in the “obey patient’s request” and “ask the patient’s favorite way”.Lingshu ? Shi Chuan has mentioned the importance of the patient’s preference and pointed out that “Not only govern the people or himself, but also govern the country or the home, obedience is the only solution”and “The meaning of obedience, not only refers to the body’s energy circulation of yin, yang, blood and Qi,but also including people’s emotions.” How to comply with the patient’s wishes, the answer is to ask the patient’s preferences. When patients’ opinions are different from physicians’, doctors should make changes to their treatment options, or induce patients to understand and cooperate for treatment [13].Evidence-based medicine practices require the combination of the best available research evidence and patient values in clinical decision making, while narrative medicine practice can help doctors learn the patient’s value orientation.

The common decision-making of doctors and patients is the product of diversified clinical choices due to the patient rights movement, the awakening of autonomy and the explosive development of the diagnosis and treatment technologies. Charles et al.described four elements of a common decision: (1)both doctors and patients should be involved in decision-making; (2) both doctors and patients should actually participate in the decision-making process,including the exchange of opinions and agreement; (3)doctors and patients exchanged information mutually;(4) both parties agreed the treatment options [14].shared decision-making is the best way for decision-making especially when the medical treatment fails to identify the best treatment plan and the existing interventions have their own advantages and disadvantages, or different decisions lead to different clinical outcomes [15].

The shared decision-making is to improve the medical service. The expected benefits mainly include:(1) improve the clinical decision-making process and its effect, to alleviate the contradiction between doctors and patients; (2) make the clinical decision-making consistent with the patient's expectations and values,and improve the treatment adherence and satisfaction;(3) improve health outcomes by improving decision-making models; (4) guide patients to choose their own (more conservative) methods of diagnosis and treatment to reduce invasive medical practices and avoid over-care and reduce their medical expenses.

At home and abroad, the research on shared decision-making mode is still under exploration. At present, initiatives to promote common decision-making are mainly through patient education,face-to-face consultation, or development of decision support tools for different user groups, including web pages, mobile applications, video, computer software,manuals and more.

Narrative evidence-based medicine and decision support tools

“To cure sometimes, to relieve often, to comfort always.” Since the development of modern medicine,the diagnosis and treatment technology had enjoyed unprecedented development. In particular, human gene map enabled the realization of precision medical technologies such as molecular diagnosis and gene targeting therapy. In spite of this, the existence of unhealed-off disease reminds of the limitation and weakness of modern medicine all the time.

Although the development of EBM provided high-quality evidence for medical decision-making, it also required doctors to adjust the treatment plan according to patients’ values and wishes, and put forward “respecting the will of the individual without fostering evidence” [2]. “The mechanical program that lists the best treatment options and solicits opinions” is most likely to turn into clinically consent of the patient or family member. The common decision-making required by “doctor-patient full communication and understanding” may inevitably come to the formality.The combination of narrative medicine and evidence-based medicine, the emergence of narrative evidence-based medicine offers an opportunity to combine “best scientific evidence” with “the most appropriate individual evidence.” Through“evidence-based narrative” and “narrative evidence-based” practices, we try to integrate “find evidence” and “listen to the story” [16]. Both medical and scientific evidence should be given to patients. To provide medical and cultural concerns, we should set dual-track treatment of clinical pathways with the overall concept from the two aspects of disease treatment and pain relief.

At the practical level, the development of patient decision tools had provided tools for integrating narrative and evidence-based medicine, which provides quantitative evidence for both doctors and patients, and allows patients to get the same feeling through the introduction of the patient’s story, identify preferences and wishes so that both doctors and patients could understand the “scientific evidence” and“individual evidence”.

Narrative evidence-based medicine is the key to practicing shared decision-making in TCM

Clinical decision making should according to the best available research evidence

In the practice of evidence-based medicine, decision making should systematically review the literature,generate research evidence, evaluate the quality of evidence, adjust the evidence, and evaluate it after decision-making. This process could promote the evidence-based informed decision-making and reduce the invalid clinical research or ineffective diagnostic interventions, which could protect patients from unnecessary medical harm.

Patient values and individual stories are indispensable for decision making

Although people all want to choose the most effective and risk-free treatment plan, in most cases, the medical decision has a great deal of uncertainty and unpredictability. A 2011 study by BMJ magazine investigated the efficacy of 3,000 medical interventions and found that the effectiveness of up to 51% of the interventions remains to be confirmed or unknown. Clinical decisions involving such interventions are described as “patient-friendly” [17].In such cases, the values and preferences of patients who assume the medical outcome should be an important basis for medical decision-making [15].

In addition, the individual stories from experiences during the course of treatment, which contain abundant information about the treatment options and the value evaluation, can be used as chicken soup for the soul to soothe patients, and can also serve as an important basis for clinical decision-making [15]. Just as “Talk is also effective.” in cancer treatment. The development of narrative medicine, qualitative evidence of evidence research and evidence-based transformation at the technical level provides ideas for analyzing and integrating such information [18].

Decision-making tools for shared decision-making

In the busy clinical work, doctors lack the skills and energy to collect clinical evidence. shared decision-making in real life may be simplified as the patients’ signature [15]. In view of that, a series of mediums that assist in decision-making have come into being, such as decision-making tools. At the same time,scholars have begun to explore ways to integrate the shared decision-making process into the clinical pathway [19].

shared decision-making is the only way under the development of precision medicine

In early 2015, the Ministry of Science and Technology and the State Health Planning Commission established the Expert Committee on Precision Medical Strategies.China’s precision medical strategic planning kicked off.Precision medicine is a new medical category that integrates modern scientific and technological means with traditional medical methods, to scientifically recognize human body function and disease essence,and maximize the individual and social health benefits by the most effective, safest and most economical medical services [20]. The strategic development of precision medicine will lead to an explosive development of new diagnostic and therapeutic technologies.

In facing the increasingly complex and diverse treatments, how to scientifically weigh health benefits,potential risks, economic expenditures and time costs?How to truly make clinical decisions based on patient needing? How to improve the process and outcome of medical services from the perspective of clinical decision, which is the most crucial aspect of TCM diagnosis and treatment? The common decision-making tools under the guidance of the concept and method of narrative evidence-based medicine will provide ideas for solving the above key problems.

1. Zhang MM, Li YP. A brief history of evidence-based medicine. China J Med History 2002, 32: 230-235.

2. Haynes RB, Devereaux PJ, Guyatt GH, et al.Physicians’ and patients’ choice in evidence-based practice. Chin J Evid Med 2003, 4: 331-333.

3. Straus S, Richardson WS, Glasziou P, et al.Evidence-based medicine practice and teaching,3rd edition. Beijing: Peking University medical press, 2006.

4. Charon R. Narrative medicine: form, function,and ethics. Annals Internal Med 2001, 134: 83-87.

5. Charon R. Narrative medicine: form, function,and ethics. Annals Internal Med 2001, 134: 83-87.

6. Wang YF. Trouble and sally of clinical medical humanities. Med Philos 2013, 34: 14-18.

7. Zhang MM, Li J, Zhang XL, et al. Doctors’perceptions of difficulties in patient involvement in making treatment decisions. Chin J Evid-based Med 2006, 6: 783-785.

8. Hang QW, Wan XL, Liu Y, et al. A survey analysis of patients’ perceptions of difficulties in shared clinical decision-making. Chin J Evid-based Med 2010, 5: 10-13.

9. Zhang MM, Liu XM, He L, et al. Patient value and preference in evidence-based medicine. Chin J Evid-Based Med 2004, 4: 707-710.

10. Ding Y. Research of status and factors about patient participating in treatment decisions in China. Central South University, Master’s Thesis,2011.

11. Ma LL. Research on current situation for cancer patient participation in curing and nursing decision-making. Chin J Practical Nursing 2005,6: 10-12.

12. Mou W, Liu Z, Lei X, et al. Analysis of Chinese patients’ autonomous willingness and participation status in medical decision-making-systematic evaluation of cross-sectional survey. Evid-Based Med 2015, 26:21-29.

13. Department of traditional Chinese medicine,Nanjing university of Chinese medicine.Translation and interpretation of huangdi neijing lingshu. Shanghai: Shanghai science and technology press, 1986.

14. Charles C, Gafni A, Whelan T. Shared decision-making in the medical encounter: what does it mean. Social Sci Med 1997, 44: 681-692.

15. Mou W. The development and application of patient support system in patients in TCM research. Tianjin Univer Tradit Chin Med 2014,19: 31-32.

16. Xia F, Wei BF. Evidence-based medicine and treatment of cancer. Med Philos 2014, 35: 11-14.

17. BMJ Publishing Group Limited. Effectiveness of treatments in clinical evidence, 2016.

18. Jin YH, Gao WJ, Li Y, et al. Advances in quality evaluation and transformation of evidence from qualitative research. Chin J Evid-based Med 2015,15: 1458-1464.

19. Mu W, Zhai JB, Huang YH, et al. Strategy for clinical evidence transformation of traditional chinese medicine: development of a patients’decision aid. World Chin Med 2017, 12:1261-1267.

20. Lin MD. China pushes precision medicine to open the era of personalized medicine. Chin J Evid-based Med 2015, 5: 44-47.