Nicole Xuan Chen and Xiao-lin Yang explore the importance of narrative medicine and hospice doula care for experiences of death and dying.
Childbirth has a lot in common with death, especially because both tend to “be treated in a medicalised care setting, and that they both concern vulnerable parties” (Fukuzuwa and Kondo 2017: 612). In ancient China, women gave birth surrounding by bào-yāo-rén (抱腰人) or kàn-chǎn-rén (看产人), which is similar to what we now call midwives. They helped expectant mothers with delivery, gave necessary interventions and offered emotional support during labour. More significantly, they were responsible for imparting practical knowledge about childbirth and motherhood before labour and ensuring that mothers were mentally prepared for childbirth.
Contemporary expectant mothers have access to a wealth of childbirth-related information provided by healthcare institutes, which are exchanged among family members, friends and peers on social media. We are also witnessing a prospering of birth doulas in Northern American counties since the 1990s, and research shows that it is also active in affluent families in China (ibid.). This indicates the returned and increased significance of doula care that used to be practiced in ancient China. In comparison, people facing death tend to be much more isolated. With the notion of death generally remaining a taboo and little death education in place to prepare individuals and family for death and the process of death (Elliott 2011: 28), people face challenges such as deteriorating physical conditions, increased demand for physical care, and most distressingly, difficulties with communication at the end-of-life stage.
It is in view of this that the research team at Narrative Medicine Research Centre of Southern Medical University (see “The Polyphony Meets China” partnership project) developed the concept of hospice narrative doula. Apart from providing daily living support, hospice narrative doulas prescribe “narrative recipes” (“叙事照护处方”) to prepare people for the process of dying, death and bereavement. In this article, we share our experience of imbuing narrative medicine in hospice care in China. We hope to exemplify how hospice narrative doulas can help people at the end-of-life and their loved ones to better tackle the challenges brought by imminent death such as communication breakdown, isolation, and the feeling of premature grief, thus helping them to confront death with confidence and achieving a good and dignified death.
Hospice doulas: the role of narrative
In the past ten years, countries such as the US, the UK, Australia, and Canada have witnessed a significant increase in hospice doulas (also called death doulas and end-of-life doulas) (Fukuzuwa and Kondo 2017: 612; Rawlings et al. 2022: 16). Attending to non-medical healthcare needs, hospice doulas work to facilitate communication between medical professionals, the client, and the client’s family. Their main responsibility is to support the client with daily living from a holistic point of view. Fukuzuwa and Kondo have given a detailed list of what this entails:
“[C]overing them with blankets, cooling them with fans, and adjusting and supporting their posture. They may also be there as someone to talk to; to convey to medical personnel verbal and non-verbal complaints such as pain, needing to use the toilet, or wishing to change position; to clean eyeglasses, tidy the hospital room, adjust the lights, provide company for walks, listen to the concerns of the family and introduce necessary resources.” (2017: 616)
Cecily Saunders claims that the patient’s distress is “bound up with his past experience of life, his ethnic or cultural background and his family and present circumstances as well as with his personality” (2006: 106). Like Saunders’s theory of “total pain,” which situates the dying person’s physical pain as intertwined with his/her emotional, social, psychological, and spiritual pain or distress, the task of hospice doulas is to attend to “the physical, emotional, social, and spiritual facets of the dying person” (Fukuzuwa and Kondo 2017: 616; emphasis added). Hospice doulas not only alleviate the pain and distress of dying people through individualised pastoral support. They share caring demands that can overburden carers and healthcare professionals. Our research team found that, for people at the end-of-life stage, the distress caused by loneliness and isolation sometimes can weigh more than that caused by impending death. This fact is often unknown to people in good health.
In contemporary China, the discussion of dying and death is challenging for both healthcare professionals and for the public (Hsu et al. 2009: 167). There is a wide variety of euphemisms for death in the Chinese language – including “xian-shi 仙逝”（which literally means “pass away to the land of immortals”), “li-kai-ren-shi 离开人世”（“leaving the world of the living”), and the more colloquial expression “zou-le 走了”(“left”). To make communications about death even more difficult, it is believed that talking about death may worsen the health condition of people at the end-of-life stage and incur bad luck (Wang et al. 2004: 54). Our project was developed to overcome this communication challenge and to approach new ways of thinking about the importance of end-of-life care in society.
Situating Narrative Medicine
In the absence of effective communication between the dying individual and loved ones, people at the end-of-life stage can easily develop “premature convictions” that their life stories are effectively over. Their anticipated death conditions their present and consequently leaves no narrative resources for a meaningful life. This is what Mark Freeman defines as “narrative foreclosure” (2001: 83). Similarly, as Anatole Broyard writes in his autobiography about the experience of cancer: “To die is to be no longer human, to be dehumanized – and I think that language, speech, stories, or narratives are the most effective ways to keep our humanity alive. To remain silent is literally to close down the shop of one’s humanity” (1992: 20). In other words, to help people obtain a dignified and satisfying experience of death, it is important to incorporate narrative in hospice care.
Joe Wood points out narrative’s role in communicating advance plans for the afterlife. As he suggests, narrative can re/affirm and repair relationships with loved ones and instil a sense of ownership in the process of dying and bereavement. Healthcare professionals are unlikely to spend time listening to each patient’s dying narrative, and thus, more intentional care practices – particularly using doula support – can help prepare individuals for the process of dying, death, and bereavement. From a theoretical perspective, including narrative theory and thanatology, hospice doulas prescribe “narrative recipes”. They “holistically” assess the patient’s life story, health condition(s) and wishes during the end-of-life experience. They work with patients to devise individualised narratives laden with underlying metaphorical potentials (in life and death), which might provoke reflections on life stories and to help them re-interpret their current situation.
The search for possibilities of “self-renewal” – to use Freeman’s words – is key for the doula. They assist patients in excavating the nuanced meaning of their lives, which can help dying people overcome their reluctance to communicate with others and release trapped speech, emotions, and aspirations. Furthermore, the focus on narrative and narration can help dying individuals to repair and re-establish interpersonal and intergenerational narrative bonds with their family, friends, and social network. A well-trained hospice doula will also listen to dying people’s wishes and help them fulfil their wishes and write “ending notebooks” together. In this way, doulas provide essential knowledge about death for patients and their families and help to foster confidence and work on maximising subjective happiness. They effectively prepare the dying for a dignified and peaceful death.
Anticipatory Grief: A Case Study
Impending death can be overwhelming for individuals and their families. The physical reality of a loved one’s decline can be as upsetting as the idea of death. Therefore, death education administered by narrative hospice doulas can also help carers and family members to work through processes of bereavement and life after the death of a loved one.
Last year, the director of ICU at Shunde Hospital contacted our team about a “troublesome” carer, Lin. [1] She was the wife to a 67-year-old patient who had been diagnosed as terminally ill due to acute kidney disease. The patient was a retired supervisor at the local Public Health Bureau. Lin, caring for her husband by the sickbed, was a former administrative staff of this hospital. Upon learning of a bleak prognosis, Lin doubted and denied the diagnosis and treatment plan given by the doctor. She consulted numerous doctors for alternative treatment plans and medication. She even filed formal complaints to the office of medical disputes of the hospital, criticising the department’s medical care quality. The doctor-patient relationship went downhill, and verbal conflicts occurred daily.
After hearing her story, our research team invited Lin to the centre for narrative-sharing sessions (“叙事分享疗程”). Lin viewed the visit as a vent for her complaints during the first session and appeared reluctant and defensive when our narrative consultant tried to steer the conversation to a more personal and internal direction. When asked about how her husband reacted and felt about the “diagnosis,” she replied angrily that the diagnosis of him being terminally ill was “not correct”. Then she fell into silence. Sometimes, people find it difficult to accept their loved one’s imminent death. Consequently, their feelings of grief manifest in unexpected ways. Pleschberger and Woslo point out that witnessing such symptoms as “altered respiration (‘death rattle’)” of someone we love can be distressing and a tremendous burden, especially for people who face death for the first time (2017: 563). One of the ways in which the centre enabled Lin to tackle her grief or at least face the dying process is encouraging her to conduct open and honest engagement with herself and others.
Lin denied her husband’s death by busying herself with searching for alternative treatment plans. Our narrative consultant recommended she read the novella The Death of Ivan Ilyich by Leo Tolstoy kept at the Centre’s library and invited her to discuss this book together during the next session. A week after, she shared her reading experience with our narrative consultant and appeared more open to discuss her conflicting ideas about grief and death. She mentioned that the story was “moving”, for it enabled her to see the internal world of a dying man. “It was tragic that he felt so lonely,” she said. Lin developed the ability and personal space to search for the meaning of life – using the imagery and metaphors of death and dying depicted in Tolstoy’s novella. Equally, Lin explored the significance of interpersonal connection and the importance of security, and she questioned the silence and evasion of death evident in the novella and her own personal experiences of grief. Our narrative consultant then asked Lin to take her husband’s perspective and reflect on questions such as “What does he really need the most?”, “How can we make him (or Ivan Ilyich) feel less lonely?” and “What can we do to alleviate the horror of eminent death?”. A few weeks later, Lin told our team that the family decided to discharge her husband from hospital so that he could die in his preferred place – at home – surrounded by people he loves.
“That dreadful, loathsome death” [2]
As medical technology develops and the scope of healthcare expands, death is becoming highly medicalised and tends to be treated mostly in clinical settings (Elliot 2011: 28). Consequently, many people die in a cold and sterilised hospital ward crammed with strange medical devices giving out unnerving beeps. Hospice doulas, providing daily living support, professional advice on end-of-life care and death education for family members and carers, can increase the significance and comfort of dying at home. This can help maximise subjective happiness as well as quality of life in the processes of dying and death. Just as Hermione Elliot points out: dying in a safe environment “can facilitate a deeper process of inner healing, resolution and readiness for death” (2011: 30).
In the Narrative Medicine Research Centre, we believe that narrative-directed hospice doula care can help reduce anxieties and fear experienced by dying people and their loved ones. Narrative medicine can assist vulnerable individuals in searching for possibilities of self-renewal in the face of death. After all, a good death is a gratifying experience for both the dying individuals and family, and it can hardly be achieved by clinical medicine alone.
Endnotes
[1] A pseudonym is used here to protect the patient’s identity. Data and anonymised information are used with the patient’s consent.
[2] The title of the subsection “That dreadful, loathsome death” is drawn from Leo Tolstoy’s novella, The Death of Ivan Ilyich.
About the Authors
Nicole Xuan Chen is a final-year PhD candidate in the School of Literatures, Languages & Cultures at the University of Edinburgh working on the project “‘A Self in Process’: Contemporary Biofictions of Virginia Woolf”. She is an associate researcher at Narrative Medicine Research Centre (SMU). Nicole is on the reader panel for James Tait Black prizes. She co-edited and translated Literary Medicine: Brain Diseases and Doctors in Novels, Theatre, and Film for the Chinese audience. Her research interests include narrative medicine, illness narrative as life-writing, old age care and end-of-life care.
Xiao-lin Yang is a professor at the General Education Department of Southern Medical University (SMU). As the first Chinese researcher to introduce the concept of narrative medicine in China, she is dedicated to promoting narrative health and narrative medicine as a research discipline. She is the founder of the Narrative Medicine Research Centre (NMRC) and the Bio-Health Narrative Sharing Centre in Shunde Hospital of SMU, and the chief advisor for over 20 narrative research centres affiliated to leading medical institutes in China.
References
Broyard, Anatole. (1992). Intoxicated by My Illness: And Other Writings of Life and Death. New York: Clarkson Potter.
Elliott, Hermione. (2011). Moving beyond the medical model. Journal of Holistic Healthcare 8(1): 27-30.
Freeman, Mark. (2001). “When the story’s over: narrative foreclosure and the possibility of self-renewal,” in: Lines of Narrative: Psychological Perspectives, eds. Molly Andrews, Shelly Day Sclater, Corinne Squire, and Amal Treacher, 95-105. London: Taylor and Francis.
Fukuzawa, Rieko Kishi, and Kazuko Takenaga Kondo. (2017). A holistic view from birth to the end of life: end-of-life doulas and new developments in end-of-life care in the West. International Journal of Palliative Nursing 23(12): 612-619.
Hsu, Chiung-Yin, Margaret O’Connor, and Susan Lee. (2009). Understandings of death and dying for people of Chinese origin. Death Studies 33(2): 153-174.
Pleschberger, Sabine and Paulina Woslo. (2017). From neighbour to carer: An explanatory study on the role of non-kin-carers in end-of-life care at home for older people living alone. Palliative Medicine 31(6): 559-565.
Rawlings, Deb, Lauren Miller-Lewis, Jennifer Tieman, and Kate Swetenham. (2022). An international survey of Death Doula training organizations: the views of those driving Death Doula training and role enactment. Palliative Care and Social Practice 16: 1-12.
Saunders, Cecily. (2006). “The Management of Terminal Illness: First Published by Hospital Medicine Publications Ltd (1967)” in: Cicely Saunders: Selected Writings 1958-2004, 91-114. Oxford: Oxford University Press.
Wang, Shing-Yin, Chung-Hey Chen, Yong-Shing Chen, and Huei-Lin Huang. (2004). The attitude toward truth telling of cancer in Taiwan. Journal of Psychosomatic Research 57(1): 53-58.
Wood, Joe. (2019). Fragments and Silences: Rethinking Narrative in End-of-Life Care. The Polyphony. 11 Jun. Available from: https://thepolyphony.org/2019/06/11/fragments-and-silences-rethinking-narrative-in-end-of-life-care/.
