Reverse care at the end of life

Origin of concept

A typical approach in social research on palliative care in particular and broadly defined end-of-life care centers on the provision of care and support to the terminally ill individuals by healthcare professionals, family caregivers, social workers, communities, or religious organizations [1, 2]. However, the social relations in end-of-life situations are sometimes reversed by the terminally ill to address not only the well-being of their families but also the interests of fellow patients, medical workers, and society in general. For example, studies on palliative care show that many of the terminally ill consider participation in research concerned with the provision of medical service as a way to help other people in the future even though it cannot benefit themselves directly [3, 4]. Additionally, research on advance care planning indicates that at least some terminally ill patients view organ donation as a gift [5, 6]. These examples present a fundamentally different perspective for understanding the complexities of social relations in end-of-life situations. They underscore the necessity to align the concept of reverse care with palliative care specifically and end-of-life care in general.

Our interest in researching reverse care at the end of life was initially inspired by the contemporary Chinese Buddhist scholar Da Zhao (达照). He explained in 2005 through one of his works that the approach to rebirth (往生, Wang Sheng) in Chinese Buddhism, especially the Pure Land School (净土宗, Jing Tu Zong), focuses on three forms of spiritual care in end-of-life situations [7]. The first is “obverse care” (正向关怀, Zhengmian Guanhuai), the basic requirement of which is helping the terminally ill to acquire a Buddhist belief about life and death or to affirm that belief. The second is “self care” (自我关怀, Ziwo Guanhuai), the basic requirement of which is that the terminally ill rely on their faith in Buddhism to overcome their fear of death and anxiety. The third is “reverse care” (反向关怀, Fanxiang Guanhuai), which requires the terminally ill and the dying to uphold the Buddhist ideal of compassion and care about other people, especially those who are suffering [7, 8]. These three forms of spiritual care are all intended to achieve rebirth in the Buddhist paradise.

The concept of rebirth in the Pure Land of Bliss, a realm within the Buddhist paradise, is clearly articulated in ancient Mahayana Buddhist scriptures, including Infinite Life Sutra (无量寿经, Wuliangshou Jing), Contemplation on Infinite Life Sutra (观无量寿经, Guan Wu Liang Shou Jing), Amitabha Sutra (阿弥陀经, Amituofo Jing), and Treatise on Rebirth (往生论, Wangsheng Lun). Among these texts, The Sutra of Infinite Life specifies that women, sinners, and people with disabilities cannot be reborn in the Pure Land of Bliss, a restriction reiterated in The Treatise on Rebirth. However, Tan Luan (昙鸾), a Chinese Buddhist monk who plays a significant role in the early development of Pure Land Buddhism in China, adopted a different stance in his Commentary on Treatise of Rebirth (往生论注, Wangsheng Lun Zhu). He proposed that women and people with disabilities could also achieve rebirth in the Pure Land of Bliss, while sinners could do so by repenting. By advocating an approach known as “the easy passage” (易行道, Yixing Dao), Tan Luan and his learned successors promoted the notion that most people living in a morally corrupt world cannot achieve rebirth in the Pure Land of Bliss through “self-power” (自力, Zili) alone. Instead, they must seek “other-power” (他力, Tali), which refers to Amitabha (阿弥陀, Amituo), who is the principal Buddha of the Pure Land of Bliss. Self-power is demonstrated through rigorous study of Buddhist texts or consistent engagement in virtuous actions. However, rebirth in the Pure Land of Bliss can also be attained by persistently focusing on the image of Amitabha or reciting Amitabha’s name at the end of life. Additionally, inviting a “spiritual friend” (善知识, Shanzhishi) to offer comfort to the dying is considered a supplementary means of reinforcing the dying person’s belief in rebirth in the Pure Land.

In the 1920s and 1930s, the Pure Land approach to rebirth developed innovative characteristics and gained organized momentum. This period marked a vibrant era of Buddhist reforms in China, highlighted by the Humanistic Buddhism Movement (人间佛教运动, Renjian Fojiao Yundong). During this time, the renowned monk Tai Xu (太虚, Tai Xu) and his followers sought to modernize Buddhism, aiming to make it more socially engaged, relevant to contemporary society, attuned to social issues, and open to interfaith dialogues [9]. This movement initiated a trend of secularization, culminating in Buddhist sponsorship of hospitals, schools, poorhouses, nursing homes, refugee relief agencies, and prisoner aid programs. Additionally, it advocated shifting the Buddhist focus from seeking happiness in another world to creating happiness in this world. However, some Buddhist leaders held different views. One such leader firmly upheld the belief in rebirth by organizing ordinary Buddhists into “end of life spiritual aid associations (临终助念团, Linzhong Zhunian Tuan).” Building on Pure Land scriptures and teachings about rebirth, a more pragmatic, detailed, and step-by-step approach to spiritual end-of-life care emerged with the publication of a handbook in 1930 [10]. Titled Bridges and Ferry Crossings for Conduct at Life’s End (饬终津梁, Chizhong Jingliang), this was compiled under the supervision of Yin Guang (印光), who was posthumously recognized as the 13th patriarch of the Pure Land School of Chinese Buddhism. Determined to achieve greater acceptance of the Pure Land faith by society, Yin Guang urged his followers to establish spiritual aid associations in cities and the countryside. To guide these grassroots organizations, in 1930, Yin Guang wrote a decree titled “Three Essentials at Life’s End” (临终三大要, Linzhong Sandayao), which was incorporated into the 1936 edition of the aforementioned handbook [11].

The three essentials are as follows. First, help in the form of comfort and reassurance must be provided to the terminally ill for them to overcome fear of death and look forward to rebirth in the Pure Land of Bliss. Second, help in the form of chanting Amitabha’s name must be provided to the dying for them to hear clearly and for their families to chant along. Third, help must be provided in the form of controlling pain in the dying and addressing their families’ sadness. In sum, the terminally ill must be encouraged to join the chanting of Amitabha’s name by murmuring or by listening. For the dying, they must be given the opportunity to hear the chant clearly and continuously. As for those who have died within 8 h, the chanting of Amitabha’s name must be continuously repeated without interruption [11]. Yin Guang believed that, after people stopped breathing, they would still retain certain sensations, including pain and fear. Therefore, 8 h of prayer and observation must be allotted for the deceased to keep them from experiencing pain or fear. During those 8 h, the deceased must not be moved to prevent them from feeling uncomfortable. Additionally, the sound of crying must be prohibited to avoid distracting the aspiration of the deceased for rebirth in the Pure Land of Bliss. Furthermore, Yin Guang included into the handbook three model charters for setting up spiritual aid associations, his personal letters about rebirth, and 12 cases of spiritual care, in addition to meticulous instructions about what Buddhist texts should be recited and how spiritual helpers should chant the name of Amitabha [11].

By emphasizing that the mobilization of ordinary Buddhists into spiritual aid associations, Yin Guang ingeniously created a supplementary method for the promotion of the Pure Land approach to rebirth. Centering on the chanting of Amitabha’s name for the critically ill, the dying, and the recently deceased to hear, Yin Guang’s proposal for spiritual end-of-life care was enthusiastically adopted for practice by more than 100 spiritual aid associations, most of which operated in southern China [12]. Yin Guang’s legacy into the present is demonstrated by a quiet revival of the spiritual aid associations in China since 2012. This revival has benefited from a government policy of allowing Buddhist monasteries to set nursing homes. Based on an incomplete count from two online sources of contact information updated in 2023, there are at least 340 spiritual aid associations operating across the country’s 23 provinces and autonomous regions, with Tibet being the only exception. In Tibetan Buddhism, spiritual end-of-life care is characterized by a more significant involvement of the clergy.

Back in 1932, Hong Yi (弘一), who would be posthumously elevated to the status of the 11th patriarch of Chinese Buddhism’s Vinaya School (律宗, Lu Zong), greatly advanced Yin Guang’s teachings about spiritual care for the dying with a lecture at a Buddhist monastery in the city of Xiamen. The lecture was published in 1935 in a brochure titled When People Are at Life’s End (人生之最后, Rensheng Zhi Zuihou) [13]. It contained the lofty proposition that the pursuit of rebirth in the Buddhist paradise should adhere to the Buddhist ideal of merit transfer (功德向, Gongde Huixiang). For those who were about to die, this ideal would need to go through four phases to be realized. First, with the diagnosis of an incurable illness, the sick would keep in mind the welfare of their families, and one of the necessary actions to take would be the preparation of an inheritance document for avoiding future family disputes over property. Second, while critically ill, the sick would gratefully cooperate with the spiritual helpers coming to assist them. Third, with the approach of death, the sick would donate some of their personal belongings to people in dire need and resolutely reject, together with their families, the use of expensive hardwood coffins, the staging of extravagant funerals, or the construction of large tombs. Fourth, at the time of mourning, no animals would be slaughtered for banquets to entertain guests coming to pay respects to the dead. Hong Yi emphasized that Buddhist believers should become keenly aware that performing merit transfer during the final stages of life represents a quintessential act of compassion [13].

Although Yin Guang, a dear of Hong Yi, also paid attention to merit transfer in end-of-life situations, he did so by identifying the provision of spiritual care as a merit transfer from the healthy and the living to the critically ill, the dying, and the recently deceased. By contrast, Hong Yi emphasized merit transfer from the critically ill, the dying and the deceased to the healthy and the living. This emphasis underscored his conviction that efforts to benefit both humans and non-humans could be pursued not only by the dying and the recently deceased but also those already residing in the Buddhist paradise through their fearless journey back into this world to help relieve the suffering of living creatures [13].

Yin Guang’s teachings about spiritual care at life’s end and Hong Yi’s insights into the transfer of merit in end-of-life situations have helped us to contextualize the concept of reverse care in the following analysis. In other words, the concept of reverse care at life’s end is borrowed from Chinese Buddhist works for an analysis of 146 interview transcripts recording personal stories about 150 deceased persons. Of the 146 interviews, three included in each case an extra interviewee. Of the 149 interviewees, two professed to be Buddhist believers. Among the 150 deceased who were mentioned in the interviews, three were Buddhist believers. In all, the interviewees and the deceased whose illness experiences were described in the interviews came from various walks of life. None of them was a monk or nun. And none was formally converted to Buddhism by undergoing an initiation ceremony to take vows and acquire a certificate of conversion.

Research methods

In early 2023, we joined 12 university faculty members to launch an oral history research project about death and dying, partly because the COVID-19 epidemic fatally affected some of our colleagues and family members and also because these faculty members had collaborated with us in the past in an interview-based study about death and dying associated with cancer. From January to April 2023, we recruited 12 teams of graduate students to conduct interviews by utilizing their family ties, circles of friends, neighborhood connections, and classmate relations to identify family caregivers, social workers, physicians, hospital nurses, and nursing home staff who had cared for terminally ill individuals from the beginning of 2020 to early 2023. Although this was our preferred time frame, we allowed the interview respondents to talk about earlier cases of death.

Three interview guides were prepared in advance. The first guide, featuring 15 questions, was concerned with end-of-life care by family members. The second guide, containing 17 questions, was for interviews with social workers and terminal care volunteers. The third guide had 40 questions for health care professionals. The three interview guides, along with a research proposal, were approved by an internal review board of research ethics at Tsinghua University.

All together, 12 university lecturers and professors and their research assistants, most of whom were graduate students, participated in four online training workshops, which featured research design, ethical conduct, interview protocols, and an emphasis on using of culturally appropriate language in discussing issues of death. Adhering to the principle of voluntary participation, this interview-based study did not offer monetary incentives to the interviewees or the lecturers, professors, and students who conducted more than 150 interviews from which 146 transcripts were compiled, discarding several interviews for lacking vital information.

The interviewees were allowed to decide which questions to answer and how long they wished to talk. The longest of the interviews lasted for more than 3 h, whereas the shortest was completed in 30 min. In terms of household registration, 44 % of the interviewees were rural residents as opposed to urban residents. The 149 interviewees were predominantly middle-aged (54 %) and elderly (12 %). Females constituted 66 % of the total. No individuals under the age of 18 were interviewed (Table 1).

In the 146 interviews, 150 cases of death were reported. Elderly people constituted the majority of these cases, comprising 75 % of the total, while minors under the age of 18 accounted for 8 % of the total. The causes of death were mostly chronic diseases, while COVID-19 related deaths were reported in 22 cases, including eight women. Aside from one case in which a 36-year-old man died of COVID-19, the other cases of death in which COVID-19 had been diagnosed or suspected (in one case) all involved elderly people. Their average age was 83, while the oldest among them was 101. The combination of COVID-19 and underlying chronic diseases was the compounding cause of these deaths, with one exception in which a 91-year-old woman suffering from COVID-19 committed suicide five days after her husband died of COVID-19 complications. Of all the 22 COVID-19 related cases of death, 19 occurred between December 2022 and March 2023.

Females accounted for 44 % of all the deceased who were mentioned in the interviews. In terms of household registration, 58 % of all the deceased were rural residents as opposed to urban residents. They had lived in most of China’s 24 provinces and autonomous regions. Their interpersonal relations with the interview respondents were mostly of a family type. The majority of the deceased was over 60 years of age (Table 2).

The transcripts of the audio-recorded interviews amounted to nearly half a million Chinese characters. The primary intention of our research was to rely on our interview guides to address a set of questions through dialogues with family caregivers and health care professionals so as to gain a greater understanding of how end-of-life care was handled at home and delivered in hospitals. For this reason, our study took a grounded theory approach in the sense that no theoretical assumptions were made in advance. Put differently, we were looking for information on specific issues and problems such as the illness trajectory of the deceased, the burden of giving care among family members, the use of personal connections to access medical resources, funeral arrangements, the proportions of medical bills covered by insurance and paid out of pocket as well as the professional experience of delivering palliative care and the performing of social work and voluntary service associated with end-of-life care in clinical settings.

We have so far examined several themes emerging from the interviews. These are the role of filial piety in end-of-life situations, the use of social connections to access medical resources, the difficulty of implementing medical directives through advance care planning, and the family-centered concealment of medical information from the terminally ill with regard to diagnoses of life-threatening diseases or prognoses of symptoms indicating the end of life. In analyzing these themes, a number of personal stories, statements, and particular expressions came to our attention, because they could be interpreted as indicative forms of reverse care. Therefore, we decided to conduct a systematic analysis by using the theme of reserve care in combination with the application of the coding software NVIVO.

Coding in NVIVO refers to the process of organizing and categorizing qualitative data, such as text, audio, or video, by assigning segments of the data to nodes. Nodes represent sub-themes, topics and expressions that emerge from the data. Simply put, nodes are reference points. After importing 146 interview transcripts into NVIVO, we undertook the coding process by selecting certain segments of the interview transcripts as our first step of coding categories. For example, an 82-year-old grandfather wrote a will before his death, which included the following statement: “Life and death are natural, no one can escape from death. After I pass away, do not grieve for me too much. Be strong and calm.” This statement was coded as “a broad-minded view of death” with the effect of comforting other people, especially one’s family members. When a 57-year-old Tibetan man was at life’s end, he instructed his wife that she should meticulously take care of their children, especially emphasizing that a daughter of theirs should be well educated and strive for a good job. We coded this wish as “love for family and children.” When a child was about to die of leukemia, she told an attending doctor that she wanted to donate her corneas. We coded this aspiration as “care for fellow patients.” Afterward, we developed more coding categories based on associations. For example, as many as six additional textual segments were coded in the category of “broad-minded view of death” with the effect of comforting other people, especially one’s family members. Thus this category’s reference-point quantity, or the number of nodes, was designated as 7. By contrast, the interview transcripts contained only two unmistakable passages with regard to terminally ill patients who were mindful of the well-being of medical workers. These two passages were coded in the category of “concern for healthcare professionals.” Its reference-point quantity was counted as 2. Through the initial process of coding, we identified a total of 83 reference points, which enabled us to develop seven primary codes as listed below (Table 3).

We then moved to the stage of developing axial codes by relating coded categories and subcategories to each other for turning the data into a coherent structure. At this stage, we developed a total of four axial codes on the basis of seven primary codes and 83 nodes. This effort laid foundation to develop the core code, which was the theme of reverse care (Table 4).

Standing for reference points, the 83 nodes which we used to develop seven primary codes, four axial codes and finally a core code were associated with 37 of the 146 interview transcripts. This means that 25 % of the interviews contained references that could be interpreted as reverse care. Depending on context, the term “care” presents multiple meanings. In the case of reverse care under our discussion, it refers to the efforts and wishes among terminally ill individuals to look after the welfare of other people, and even society at large. To avoid misunderstanding, reverse care does not imply medical care, although it could closely linked with medical care. A case in point is organ donation. If we need a concise definition, reverse care refers to an approach in which the recipients of terminal care play a significant role in looking after other individuals such as their children or partners and possibly fellow patients or medical workers. This role flips the conventional care dynamics, reflecting the aspiration of the critically ill and the dying to uphold their sense of purpose and dignity by contributing wisdom, experience, and support to their loved ones and other people as well. Reverse care embodies reciprocal relations through a mutual exchange of emotional, practical, and spiritual support, fostering deeper social and affective bonds between those who are about to die and those who will continue to live. Reverse care could contribute to society at large through organ donation, the offering of one’s body for medical research and insistence on eco-friendly burials.

It should be acknowledged that our interview-based study, which provides the basis for this paper, has some limitations. The interviewees were not randomly selected. Rather, they were recruited through social networks of friends, classmates, colleagues, families, and community connections. Some of the transcripts followed a verbatim style, while the others used long quotations in tandem with descriptions. Also, errors might be associated with how the interviewees retroactively recalled personal or professional experiences in end-of-life care situations. A few interviewers failed to record the deceased’s “actual age” (实岁, Shisui), which is different from “nominal age” (虚岁, Xusui). The traditional Chinese way of calculating age includes the time spent in the womb. Therefore, a baby is considered to be one year old at birth. This caused discrepancies between the nominal age and the actual age in a number of interviews. Additionally, out of our respect for family caregivers, we allowed them to decide what questions they wanted to answer and when an interview should end. This resulted in the incompleteness of certain information about death and dying. Some of these limitations could be overcome in a new round of research, while others will probably remain difficult to address, given that interviewing people about their loved ones who have died constitutes a sensitive topic and a particular challenge for researchers.

Discussion of findings

Our main findings can be described as “reverse care in four dimensions.” These include caring about one’s family and fellow patients, medical workers, and society at large. The manifestation of reverse care in our interviews differed from case to case. For example, a 67-year-old woman said during an interview: “At first, neither the attending physician nor I intended to tell my mother about her diagnosis.” But a child’s mind can never hide things from a mother. ‘Do I have cancer?’ my mother gently asked me, making me unable to look directly into her eyes. I feared seeing despair in her expression because I was afraid that my only pillar of strength would collapse. Upon learning about the diagnosis, however, my mother simply smiled faintly, as if she did not realize that she was about to die. She said to me, ‘Don’t be afraid, my dear. Mom is strong.’ Her words were so powerful, each one stirring up my heart. In that moment, I decided to be stronger, even stronger than my mother” (Interview, 2023, No. 17). In this case, “my only pillar of strength” was a reference to the intention of the middle-aged woman to conceal the bad news that her mother was suffering from late-stage kidney cancer, hoping that she could continue to live emotionally undisturbed, at least for a while, without knowing that she had a terminal disease. Yet, when her mother finally learned about the diagnosis, she calmly comforted her daughter in an articulate manner. By comparison, Uncle Li, an elderly man who was not adept at verbalizing his feelings spent the last night of his life peeling peanuts and putting them into a basket for his granddaughter, who liked to eat boiled, spiced peanuts. That basket of peanuts, according to the interview respondent, also represented Uncle Li’s indirect way of saying goodbye and expressing love to his entire family (Interview 2023, No. 2).

A commonly reported effort of reverse care in the interviews was trying to spare one’s family the burden of medical expenses. This can be analyzed in various ways. One of them is by paying attention to the fact that rural residents accounted for 58 % of the deceased whose illness experience was reported in the interviews. The coverage under the medical insurance plan for rural residents in China, often referred to as the New Rural Cooperative Medical Scheme (NRCMS), varies between 40 and 60 % of the total medical expenses incurred. It also varies by regions and even in localities within the same region because of different economic conditions and implementation strategies of the NRCMS at the local level, affecting the out-of-pocket medical expenses borne by rural residents [14, 15]. A typical reaction to the burden of medical expenses on one’s family, according to the interview transcripts, was for those who were at the end of their lives to refuse intensive care or forego hospitalization. This tendency was especially pronounced among seniors, who constituted 75 % of the diseased whose illness experiences were related in the interviews.

Considerations of inheritance and efforts to prevent discord among family members came across prominently in the interview transcripts. As a young woman recalled: “Grandfather took care of everything, repairing the courtyard where father had not lived for years. Our courtyard was low-lying, and Grandfather gradually raised it with soil several times to make it higher. He also cut down a few trees in our courtyard. Over 20 years ago, Grandfather and our third uncle’s family lived together in this courtyard. Grandfather was worried that, after he passed away, our third uncle might bicker with us over the money from selling trees. By instinct, Grandfather gave more thought to this possibility than we did. He believed in being cautious regarding other people’s intentions, and he helped my cousin who lost his father at a young age to build a new courtyard” (Interview 2023, No. 102). The young woman marveled in the interview at her grandfather’s persistent care for his family until the last days of his life. According to local customs regarding funeral processions, the immediate relatives of a family where a death has occurred should spend the preceding night at the residence of the recently deceased. In preparation for his own funeral procession, the interviewee’s grandfather asked his wife to make extra bed covers for the incoming guests. He also stressed to his wife in his final month that neighbors, friends, and relatives who would come to his funeral banquet must be provided with dishes and liquor of high quality.

Additionally, bidding farewell properly emerged as a prominent topic in the interviews, and it often involved the issue of family harmony. Expressing gratitude and making apologies were encapsulated in this effort. A 50-year-old interview respondent described her 87-year-old grandmother’s experience at the end of life by stating: “In the last two or three days before she died, Grandma became clear-minded again. She stopped cursing at people and apologized for having behaved badly towards my aunt” (Interview 2023, No. 42). In this case, “Grandma” had experienced severe pain in the final weeks of her life. She lost self-control under the attack of full-blown colitis with rheumatic pain. However, in the last few days, “Grandma” was able to compose herself and apologized for having used foul language against her principal caretaker, who was an aunt of the interviewee. It may be necessary to explain here that women made up the majority (66 %) of the people who were interviewed in our study, partly because the interviewers who participated in the study as voluntary research assistants were mostly young women who used their female social networks to find interviewees, and also because Chinese women, like their counterparts elsewhere, shoulder the primary duty of providing care to the sick at home.

As reported earlier, we identified 83 reference points, seven primary codes, and four axial codes to construct a coherent structure for coding the conceptual theme of reverse care. We found that a total of 61 reference points could be coded in the category of “care about one’s family.” This finding has a measure of theoretical significance, with direct bearings upon a theory of social relations that was proposed by the eminent sociologist Fei Xiaotong. In his construction of the concept known as “differential patterns of order and hierarchy,” Fei postulated that the Confucian notion of self profoundly shaped interpersonal relations in Chinese society. Writing in the late 1940s, Fei compared the Confucian concept of self to a stone thrown into water, causing ripples that extended outward in concentric circles, and symbolizing varying distances in interpersonal relationships [16]. Being the center of gravity for all kinds of social relations, according to Fei, the self would behave in the manner of a relational self by treating one’s family ties as the closest circle of social connections with the outside world. The next circle of social connections would be one’s extended family by patrilineal descent and marriage, to be followed by one’s patriarchal lineage and extended martial kinship. By putting an exclamation mark on understanding the notion of self as the center of social relations, Fei interpreted a passage from The Analects of Confucius (论语, Lun Yu) as saying: “Only when one wishes to stand up can one help others stand up. Only when one wishes to succeed can one help others succeed”. To further illustrate the influence of Confucianism on the differentiated nature of social relations, Fei cited Mencius’ hypothesis that even the enlightened Emperor Shun would “abandon the entire world” to protect his father. Fei also cited a passage from The Book of Rites (礼记) as saying: “Being close to one’s kin, honoring the honorable, respecting the elderly, distinguishing between male and female; these are things that people can never change” [16]. As he put it in a rather absolute term, one’s self interest and obligations to one’s own family would inevitably override an individual’s other social responsibilities [17].

Fei’s theory could be reasonably adopted to explain a distinctive pattern of reverse care in our study, since concerns for one’s family were a predominant manifestation in the interviews. These concerns were directed towards the burden of care on family members, the interruption of their work, the impact of anxiety upon them, and their financial stress associated with out-of-pocket medical expenses. As a 43-year-old woman said in an interview, she and her husband had owned two apartments in the city of Fuzhou in Fujian Province, using one for themselves and the other to rent out for extra income. After her husband was diagnosed with rectal cancer, medical treatment sustained his life for five years, with out-of-pocket medical expenses totaling one million RMB. To cope, the couple sold one apartment. At the terminal stage of her husband’s life, the wife wanted to sell the other apartment in order to keep him in the hospital. Her husband resolutely refused, saying that the apartment should be kept in the family for their only daughter to feel that she had a real home after leaving the hospital with a small bag of oral painkillers, the husband returned to his native home, where he died in great pain after using up the painkillers (Interview 2023, No. 11).

At life’s end, reverse care towards one’s family could be as simple as uttering a few words. The 67-year-old woman whom we have mentioned earlier told one of our interviewers that, when her mother was in a late stage of kidney cancer, her complexion lost its former radiance and her frail body seemed as if it could break at any moment. As her heartbeat began to fade away, the elderly woman’s eyes were fixed on her daughter, and her lips trembled slightly. The daughter sensed she wanted to say something and quickly leaned in to listen. Her mother slowly turned her head towards her daughter and said, “Dear daughter, Mom is so happy.” Then her heart stopped beating completely. That short utterance, possibly intertwined with various meanings, nonetheless conveyed gratitude to her daughter. In the last year of the elderly woman’s life, her daughter was her primary caretaker. As the daughter related in the interview: “I cherished every moment of those days. I sat by my mother’s bed, listening to her recount stories from the past, and we listened to radio broadcasts of Peking operas and stories. Those were such peaceful days” (Interview 2023, No. 17).

Fei’s theory regarding the notion of self and obligations to one’s family as a constant determinant of social relations is one of the most cited sociological theories in Chinese academic journals. A search in the online portal of China National Knowledge Infrastructure (CNKI) shows that this theory had more than 13,000 citations from 1982 to 2023. While it could be reasonably adopted to account for the distinctive pattern of reverse care towards one’s family, its explanatory power is insufficient for explaining the other three dimensions of reverse care under our discussion. In technical terms, of the 83 reference points representing the theme of reverse care in our analysis, 22 stand for caring about medical staff, fellow patients, and social responsibility with regard to funerals, burials, and organ donation. Expressed differently, nearly 27 % of these reference points are related to the theme of reverse care in terms of social responsibility and in regard to individuals outside one’s family. This tendency points to the extension of self beyond what Fei identified as the innermost circle of social relations. When interviewed, one university professor described how his mother died of lung infection in 2022 at the age of 86. After saying that his mother habitually cared about other people, he recalled: “I remember her holding the hand of every nurse who entered her ward. Each time, she expressed her gratitude by pointing at herself to indicate she was all right and that the nurse should attend to other patients” (Interview 2023, No. 9).

In three of the interview transcripts, children’s reverse care was mentioned. A medical student who learned through her internship about an 18-year-old boy’s wish to donate his organs related in an interview: “After his parents agreed, the boy realized his wish to help more people survive and see the world on his behalf” (Interview 2023, No. 127). According to a leukemia specialist, when her hospital launched a fund-raising drive in cooperation with social media to support the treatment of children suffering from leukemia, the parents of children with leukemia in her care strengthened their connections with each other by helping the fund-raising drive go forward quickly. They called their bond “the heart of love.” The interviewee explained: “Each year, parents of children with leukemia who are warmed by the bond of love to get through the hardest times with the support of this love. Parents of children who sadly passed away continue to carry on this love. After the relapse and death of Xiao Hu, the first child whose treatment was supported by the fund-raising drive, his parents came to see me and brought 2,000 yuan they had borrowed, hoping to help another child. When I refused to accept the money they borrowed to make this donation, they knelt down in front of me and said, ‘We have received so much love and hope to pass it on.’” The interviewee added by saying: “In the second year, Huang Huang, another child we treated with the support of donated funds, unfortunately relapsed after ceasing medication. This thoughtful child asked her parents to donate her corneas. She said to me before she passed away, ‘Auntie Zhou, so many people have loved me, and this is the only way I can repay everyone.’” (Interview 2023, No. 82). In this case, a child’s hope to donate her corneas was clearly motivated by gratitude. During the interview, the leukemia specialist read passages from four letters from parents of children who had died from leukemia. These letters contained two references to attached cash and two hospital records of donations received, all from the letter writers. One of the records had five lines of information listing the amount of the donation (1,600 RMB), the donor’s identity as “father of a child with leukemia,” the date of the donation, a medical file number, a bank account number, and a boy’s full name. Below these five lines of information was the boy’s thank-you note addressed to our interviewee. In the note’s final sentence, the boy wrote: “I wish you good health, success at work, all the best, and a lifetime of peace” (Interview 2023, No. 82). The hospital where the interviewee worked had a center specializing in diagnosing, treating, and caring for children with leukemia. To make sure that children with leukemia did not have to leave the hospital when the financial resources of their parents were exhausted, the interviewee started to raise funds in her spare time, which promoted her hospital to start a crowdfunding drive by working with charity organizations and social media. This effort supported about 100 children a year before the outbreak of the COVID-19 epidemic.

As mentioned earlier, 22 cases were reported in the interviews as related to COVID-19. Of these, 21 of the deceased had an average age of 83. Most of them, 19 to be precise, died between December 2022 and March 2023, when the COVID-19 epidemic reached its severest phase in China. It was a time when access to medical care was critically undermined. Hospitals became understaffed under the impact of COVID-19 affecting physicians, nurses, technicians, and other medical workers, as the number of patients suddenly multiplied. Medical supplies ran into grave shortages and the corridors in many hospitals were turned into sick wards. Even in these circumstances, a young woman managed to help her grandfather donate his body for medical research. At the age of 92, her grandfather died after being infected twice with COVID-19. According to this young woman: “Grandpa did not harbor any religious beliefs. He considered the burning of good-luck paper for the dead as a waste and environmentally polluting. After he passed away, we carried out his wish, contacted the Red Cross Society, and donated his body to a medical college. At the end of a simple procedure to pay respects to his body, the medical college’s representatives bowed to us three times and then carried away Grandpa’s body. It was donated in strict observance of a policy called ‘three prohibitions, two offerings, and one cultivation.’ That is to say, the donation process forbid the staging of memorial services, the display of wreaths, and the use of ash boxes for an eventual internment. The donated body must serve either anatomical research or human tissue transplants. The ashes of the dead must be buried under a tree. From now on, the day of Grandpa’s death and Organ Donation Day will serve as the occasions for me and this lovely city not to forget these souls of kindness” (Interview 2023, No. 2).

In all, two cadaver donations were reported in the interviews. In addition, a boy donated some of his organs, and a girl requested to donate her corneas. Several seniors insisted on simplified funerals either to reduce financial burdens on their families or in the interest of environmental protection. Two seniors realized their wishes for eco-friendly burials. The Chinese government calls eco-friendly burials “green burials” (绿色丧葬, Luse Sangzang). While emphasizing the cremation of the deceased’s body, the green burial practice includes scattering the ashes at sea or burying them in designated forests, lawns or flower gardens. Building smaller tombs and shared tombstones to mitigate the pressure on land resources are “green burials” too.

Conclusions

The cases of reverse care at life’s end, as described so far, reveal the human spirit proceeding from one self and one’s family to a journey of caring about other people and even environmental well-being. Reverse care renders death with intrinsic meanings. For a long time, the process of dying of illness has been perceived as a process of deprivation, removing human functions of physicality, mental capacities, emotional stability, and finally destroying people’s bodies and thought. It is often taken for granted that assisting the helpless, managing pain, providing comfort, and rendering dignity to the dying constitutes the essence of terminal care. The discourse surrounding the topic of good death or death with dignity also tends to hinge on “our” care for “their” benefit, without considering “their” care for “our” benefit.

From a constructionist perspective, reverse care at life’s end could be seen as a construct of meaningful death. Applying the notion of meaningful death to end-of-life situations, the social relations of care would start to look very different, revealing reciprocity, mutual aid, and the potential of the dying individuals to engage with the world. Reverse care embodies compassion as well as contribution to the happiness of others. The dying express affection for their families through words and gestures of love, gratitude, farewell, or apology, while their actions such as donating their organs, choosing eco-friendly burials, and demonstrating care for fellow patients or medical workers, connect with broader social relations and even planetary existence.

Since we mentioned the Buddhist monk Hong Yi in the first part of this paper and applied his notion of merit transfer at life’s end in tandem with the concept of reverse care to guide our analysis, it is worth describing his own near-death wishes for reverse care. Before his ordination as a monk in 1916, Hong Yi relied on his family’s vast wealth to pursue various artistic endeavors, gaining recognition as a poet, stage actor, professor of fine arts, and esteemed calligrapher. After becoming a monk, he led a life of extreme poverty, resulting in malnutrition that left him critically ill in 1931. In anticipation of death, he expressed his wish to publish his work on monastic discipline and donate the book’s earnings to aid other people to publish Buddhist works [18]. He also wrote to one of his students that the Buddhist books and a Buddhist statue in his possession should be given to someone in need [19]. In 1935, he suffered from scabies on his arms and feet, causing muscle loss and exposing decaying bones. Again, in anticipation of death, he expressed in a will his wish to offer his body to feed a hungry tiger that had been sighted in a nearby mountain forest [20]. Under the care of his disciples, he recovered and continued to compile Buddhist texts on monastic discipline. In 1942, first afflicted with malaria and then typhoid fever, he expressed in his will a request that ants be prevented from climbing into his coffin before cremation, fearing that many ants would be burned to death [20]. Moreover, towards the end of his life, he continued to compile Buddhist texts about rules of conduct for monks and nuns, using the opportunity of a ceremony to demonstrate how to reenact the procedures recorded in a text he compiled on Buddhist tonsure and ordination rituals [21]. His compilation of Buddhist documents concerned with monastic discipline laid a scholastic foundation for the revival of Vinaya Buddhism in China. Indeed, Hong Yi died a meaningful death, using his words and actions to demonstrate his conviction that the transfer of merit at life’s end would exemplify a quintessential act of compassion.

In sum, reverse care endows death with meaningfulness. It reflects a deep sense of social responsibility among terminally ill individuals, fostering reciprocal relations and contributing to society. It offers a very different perspective on end-of-life care, creating meaningful engagement with the world through death and thereafter.