On the local practice of narrative palliative care

The value of life

Speaking of the shortage of life, living to 81 years old is the greatest value of life. In the old saying, 60 years old is a full cycle of life, 70 years old is rare, and 80 years old is longevity; in the new saying, 70 years old is not so old, 80 years old is not rare, and 90 years old is longevity. Looking back on my experience, I went to Mao Shan (茅山) around 40 years old and met a Taoist fortune teller there. He said that “you look blessed and rich, and shall have good luck during your old age. But there might be a life crisis in the process and die at the age of 56.” In order to resolve the bad prophecies, I bought three fish and Kowtow (叩头) three times. Then the Taoist helped to say good words and prayed to God for me. Although I did so, I always had a little doubt in my mind, especially when I turned to the age of 56 and 57. I was sometimes worried but kept it to myself, till now. (Apr. 16, 2019).

This is part of the journal written by Mr. Lee, 81 years old patient, who was diagnosed of advanced malignant tumor. From the description of the value of life, we could be aware that he was thinking life seriously. Especially he wishes to live longer.

A good incident (巧事 好事)

Yesterday afternoon, I went for a walk in the park and sat down on a bench to have a rest. Two elders came up to me and asked me why I was wearing so many clothes. We talked for a while …… I thought that these elders I met yesterday, a 80-year-old, and a 79-year-old, just like two immortals! They cared about me so much and sent blessings to me. Keeping good mood, following the instructions of doctors, I will be fine, I am sure I’ll be fine! (Apr. 25, 2019).

When Dr. Hou who was in charge of Mr. Lee at that time, made treatment plan for him, she prescribed targeted chemotherapy drugs after reading the dairy above for reference. Other colleagues have questioned that why used this kind of expensive drug for him (because his lifetime is limited), Dr. Hou answered: “Have you read his diaries? Do you have any idea how badly he wants to live? Won’t you let him try?” These sentences represented in the teaching movie (called Dariy) too. From the patient’s perspective, medical practitioners could offer proper service to meet requirements of the particular patient. Patients’ experience and need are considered by doctors to practice the patient-centered concept, which we also think is the clinical value of narration.

It’s a miracle!

It’s time of the Dragon Boat Festival. Our families are together and very happy. In the morning, I opened the gift box and found there were Zongzi (棕子), salted eggs, stinky Tofu, and so on. I felt a little taste. With hot water to Zongzi, as you like, drink a carton of milk, eat a Zongzi and two pieces of Tofu, I felt very comfortable … This is a new miracle! I have not eaten any dry rice during these three months, I could even eat Zongzi today! This is will be a good sign meaning cured future. (Jun 7, 2019).

There are quite a few descriptions about eating in Mr. Lee’s journal such as Zongzi, candy, rice, tofu, etc. After using the targeted drug, the appetite of Mr. Lee gradually recovered for a period of time. He told us, “I reported to Dr. Hou before the Dragon Boat Festival. I said that I ate a zongzi tonight. Certainly, I only ate half of it.” It seems that “eating” becomes a key word reflecting the treatment effect. “Eat a little bit of rice gradually. At first, one Liang (Chinese unit of weight) rice with some soup. Then, I can eat more and more each day. Now, I can eat two Liang rice.” These suggest that there is a natural correlation between the patient’s daily life and medical practice. Physicians practice medicine with narrative competence are better at connecting the effect of treatment with another world that patients are more familiar with.

These are stories of Mr. Lee. He was in rather good health until the bad news struck him and his families with the serious illness. How to inform the bad news, how to formulate a comprehensive treatment plan that reflects the wishes of patients and their families, how to practice the concept of palliative and hospice care in integral care? How should family members and medical staff be present in the final stage of life? These are, it should be said, “intractable” issues. In her creative use of “journal therapy”, Dr. Hou encourages the patient and his families to express their thoughts and emotions through writing, enhancing his self-experience and enhancing his sense of existence, thus providing the possibility to change his negative cognition [1].

As a practitioner of Narrative Medicine, Dr. Hou could always listen to her patients and understand them. By leting the patient keep writing journal, she hopes to achieve three goals: First, it could be supplement clinical observations with patient records of his daily lives, including details of diet, discomfort, and the effectiveness of symptom control, it makes care for the patient more precise. Secondly, it records the thoughts and demands of the patient, so that she can establish emotional connection and even empathy with the patient in a short period of time, and discover what medical care team can do for the patient. Finally, family members can also record their thoughts and feelings in the same journal. After the death of the patient in the future, a shared diary is not only a great memorial, but the details of care can also be comforting to the family, reducing regret and sadness.

There are more than 20 pieces of journal written by Mr. Lee from the time of his admission to the time of our investigation (Nov, 2019) totally about 4,000 words. The narration outlines the experience of his illness and seeking medical treatment, while the diary shows his thought of life.

Research question

The goals of this study are [1]: describing muliple perspectives experiences of end-of-life based on the case foucing on narration especially patients’ perspective [2]. Tring to figure out how to applicate narrative palliative care [3]. Analizing this case with narrative theroy related for medical teaching.

Study design

We utilize qualitative insights around care of patients experiencing and the interaction between doctors and patients. Specific methods include in-depth interview, observation and taking a movie.

We conducted in-depth interviews with the patient, his main caregivers including his wife and his eldest son, as well as Dr. Hou. In addition, we took a panel discussion with Multi-disciplinary consultation team (including surgery, nutrition, Intervention therapy, nursing, social work and aromatherapy (芳香治疗). We also visited Mr. Lee’s home together with his eldest son, analyzed the texts of his journal and took a movie for teaching.

In this study, all participants signed an informed consent form.

The compatibility of medcial goals

Dr. Rita Charon, who coined Narrative Medicine defined narrative competence. “The effective practice of medicine requires narrative competence, that is, the ability to acknowledge, absorb, interpret, and act on the stories and plights of others” [3]. By the definition, we could make sense that it is different from evidence-based medicine. Next, “Medicine practiced with narrative competence, called narrative medicine, is proposed as a model for humane and effective medical practice” [4]. Generally, Narrative Medicine aims to be an effective complement to biomedical practice. However, we further think it could be better at answering the question of attribution especially when a person encounters serious illness and even death [5]. Meanwhile, according to WHO Definition of Palliative Care 2002: Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual [6]. So, guided by shared medical goals, integrating narrative medicine with palliative care will be an effective way to manage healing in the face of serious illness and death. The multidisciplinary field of narrative medicine offers paths to better understanding of the end-of-life experience and tools to help the dying and their caregivers [7].

What we consider a good death is, of course bound by the time period in which we live, our culture, our beliefs. Palliative care is a contemporary embodiment of that age-old concept of the ‘good death’. Dame Cicely Saunders, the founder of hospice, recorded and used over 1,000 patient narratives to develop core concepts of care at the end of life [7]. So, we could find the consistent source between the Narrative Medicine and the Palliative Care.

Briefly, narrative is both core concept and helpful tool in palliative care practice.

The compatibility of the necessity of life education

For humans, life is meaningful because it is a story. We need to evoke medical students and tell them: We make meaning of illness, suffering, and death through narrative, by telling a story. How, at the end of life, narratives of patients, caregivers, and clinicians serve to connect to those still living, and how through each telling and listening, we honor and validate the experience of suffering [7]. That is why narrative comes back to the context of medical practice and is taken seriously. Because the potential benefits and challenges in the use of narrative research methods as a means to deepen our understanding of patient, carer and health professionals’ experience, and to support improvements in end of life care policy and practice [8]. “There is increasing evidence that practitioners’ relational skills, such as empathy and reflection, improve patients’ health outcomes. The teaching of these foundations can be facilitated with techniques from narrative medicine, a compatible care model that conceptualizes health care as a context in which humans exchange stories and thus require narrative competence” [9].

So, for medical educators, It is the task to find the mechanism of connection and transformation between death and narration in medical education. Next, we introduce education methods on narrative medicine both from Dr. Charon and physicians in China.

Dr. Charon noted that because sick people need physicians who can understand their diseases, treat their medical problems and accompany them through their illnesses [3]. “We have come to realize that narrative writing in clinical settings makes audible and visible that which otherwise would pass without notice” [10]. However, this is hardly realized by bio-medical practice. She utilizes such methods as close reading and reflective writing allows narrative medicine to examine and illuminate 4 of medicine’s central narrative situations.

In the localizing of Narrative Medicine in China, we find the case of practice – Narrative medical records in the form of dialogue written by Dr. Ning from Peking Union Medical College Hospital. As one of the cases locally, Dr. Ning’s experience in palliative care inspires us to think about the clinical practice path of narrative medicine. In her medical records, there are lots of narratives between she and her patients, patients and their families. These narratives could help doctors to understand patients and their families to the disease cognition, to the death preparation, the psychological state, and directly corresponds to the health care. Meanwhile these contents are often familiar with the daily life of patients, is an important attribute of their identities. On the premise of reciprocity, the writing of narrative content reflects and gives meaning to the medical experience [11]. In one word, by this case, we could state that there are possible ways to practice Narrative Medicine, and it’s better to extend paths and understanding of Narrative Medicine practice. Also, it’s value to show that these two disciplines has been promoting mutually in medical education and practice in China though there is little research on them. We prefer to say that this is a very methodological insight.

The compatibility of value

We try to explain the compatibility of value between these two areas form two aspects which are as described below:

First, highlighting humanistic idea and strengthing the subject value. This kind of words such as respect, equality, cooperation and sharing etc. are common key words in the fields of narrative medicine and palliative medicine. A study on ethics reveals that “the caring and reflection on the subject value in the process of narration has strengthened the subject value in medical practice” [9]. Meanwhile, these ideas are able to transform action. For example, in clinical care, perception and representation come together through the acts of bearing witness, compassionately acknowledging, and subsequently representing a patient’s suffering through written documentation and communication. These are requisite doctoring skills, and they are central to palliative care [12] too. As a helpful complement to biomedical practice, we could use “cultural humulity”, communication skills and respect for patients as narrative ability. This embraces the value of narrative medicine, by committing to sustained self-reflection, develop and advocate partnerships in medical practice.

Secondly, emphasizing competence and enhancing clinical value. These two fields both focus on emphasizing abilities to act on others’ dilemmas especially serious illness and death in clinical practice. In hospice and palliative care, communication promotes clinical well-being, showing the irreplaceable clinical value of narrative medicine in palliative care practice. Narrative interventions are actively being evaluated with the intention of improving communication and well-being among all parties within the palliative care and end-of-life experience [13]. We have also seeked further clinical value in narrative palliative care application through recently research on medical records according to the consultation cases of Dr. Ning from PUMCH [14–16]. By application of narrative palliative care, the improvement of competence and the transformation of action form the foundation of clinical value.

The compatibility of the key link in the narration

What is the key link in the narration? Yes, there would be such factors as Dr. Charon has mentioned: there are three factors or skills called attention, representation, and affiliation. However, we stress that building connections should be one of the important skills during the narrative medicine practice.

Serious illness even death can cause isolation in the medicine situations. In their isolation in the last chapter of their lives, human beings ask only to be permitted to keep shaping the story of their lives — in the world — to make choices and sustain connections to others according to their own prerogatives [17]. For patients especially who have encountering seriously illness just like the elderly man writing the value of life in the case above, narrative would be irreplaceable for its function in reconstructing life between the present and the past, even the future.

We could regard Narrative Medicine as a way to join health care providers and patients in the end-of-life care process, and to fill the void that has emerged at this crucial crossroads of life. Our task is to make the inevitable death, as the last chapter of life, into a more meaningful and humane experience [8]. Narrative medicine is an approach that can strengthen relationships, compassion and resilience [18].

So, the common understanding is: adopting methods of Narrative Medicine in Palliative Care would bring significant meaning for caregivers and enhance clinical value. And as for how to utilize the methods, it would be specific experiences, which need to be summarized and to be extended.