A study of end-of-life care communication and decision-making in China by exploring filial piety and medical information concealment

Introduction

China has the largest aging population in the world today, with 18.7 % of the population aged 60 and older [1]. In tandem with aging, China has also experienced a growing cancer burden. In 2020, the country accounted for 24 and 30 % of the world’s new cancer diagnoses and cancer-related deaths, respectively [2]. Given these trends in the population, there has been a greater focus on end-of-life care in China’s recent history, including the development of hospice and palliative care [3]. For example, in 2017, the Chinese government issued guidelines for hospice care and designated pilot areas for experiments. In 2019, the government expanded the pilot program to 71 more areas [4].

More recently in 2022, Shenzhen became the first city in mainland China to pass legislation protecting patients’ right to decide how they wish to be treated near the end of life [5]. Under Article 78 of the revised version of the Medical Regulations of Shenzhen Special Economic Zone, patients have the right to express their desire to refuse measures such as cardiopulmonary resuscitation (CPR) and intubation in writing or audio or video recordings [6]. This is a major milestone for patient-centered end-of-life care in China. However, to implement such legislation in clinical settings, there should be a more structured process of discussing an individual’s care preferences and the decision to refuse treatment under certain circumstances – known as advance care planning (ACP) [7]. In mainland China, the Beijing Living Will Promotion Association first started a website to advocate ACP and later registered itself as an official organization in 2013 [8]. However, ACP is not yet integrated with end-of-life care practices, and the awareness of ACP has remained low in China. For example, a 2017 cross-sectional study (n=264) at a Beijing tertiary cancer hospital showed that 82.2 % of advanced cancer patients had never heard of ACP [9].

Understanding the current landscape of end-of-life care communication and decision-making in China is crucial to successfully implementing the new Shenzhen legislation and similar laws. For instance, it is common practice among Chinese physicians not to inform patients directly in cases of severe illnesses and life-threatening conditions. Instead, they prefer to ask the patients’ families, especially their adult children, to decide if the patients should be informed. In a survey administered to 180 physicians in Shandong province, 98 % said they would discuss cancer diagnoses with the family before discussing them with the patient; 82 % said they would withhold the information from the patient at the family’s request [10]. Another study showed that 97.2 % of end-of-life care discussions (n=436) among advanced-stage cancer patients at a Shanghai tertiary cancer center occurred only between the patient’s relatives and physicians [11]. In addition to the concealment of medical information, intensive care remains dominant in end-of-life care despite potentially prolonging a painful process of dying and compromising the comfort and dignity of the dying patient [3]. In the same study at the Shanghai cancer center, 221 out of 436 patients (50.7 %) received at least one of six life-sustaining treatments. These life-sustaining treatments include intubation and mechanical ventilation, tracheostomy, gastrostomy tube insertion, CPR, artificial nutrition and hydration, and vasopressors/inotropes [11].

Studies that feature the concealment of medical information and the decision to opt for intensive care link these phenomena to filial piety and the family’s assumption of medical decision-making as their responsibility and even “natural right” [3, 10, 11]. In the Confucian conceptualization of the family as a close-knit social unit, filial piety (孝 Xiao) denotes children’s respect, obedience, and obligation to support their older parents emotionally and financially, honor ancestors, and preserve the family line through childbearing [12, 13]. Furthermore, a filial child strives to achieve longevity, prosperity, and posterity for their elders and assumes that their longevity proves that the family has appropriately cared for the parents [14].

Contemporary bioethics literature on patient autonomy has increasingly acknowledged the relative nature of patient autonomy [15], [16], [17]. Traditionally, bioethics literature has emphasized self-determination and rejected medical paternalism and external influences that might impede patient rights to informed consent. However, when patient autonomy is largely defined as self-determination, it diminishes a more layered construct of personhood formed through connections with others, including family. Medical decision-making rarely happens in a vacuum because humans have deeply embedded emotional ties with their loved ones [15]. The French philosopher Paul Ricoeur similarly understood the self and one’s own identity to be fundamentally shaped and constituted by relationships with others and the world. His definition of the self consists of narrative and dialogue identities, interplay of participating in and distancing from the world, and hermeneutics [18, 19]. Individuals develop self-identities through their narratives about themselves and dialogues with others. During this process, the power of social participation in developing a sense of self is coupled with reflective thinking by keeping a distance from social affairs and with interpretations of one’s experiences within sociocultural contexts. Furthermore, Ricoeur does not view oneself and others in dichotomous or dualistic terms but instead sees “tension” between them. Such tension is embedded in one’s sense of self, and individuals continue to cultivate their sense of self “by keeping these tensions alive” [20].

Similar ideas can be traced throughout China’s history, particularly in the Confucian tradition. In the Analects of Confucius, there are expressions for identifying oneself in Wu (吾), Wo (我), and Ji (己), with Wu appearing 114 times, Wo 53 times, and Ji 29 times [21]. The first two are predominantly used in relation to friends, superiors, brothers, parents, governments, neighbors, and nature, while Ji is mostly confined to the meaning of self-cultivation (修己 Xiu Ji). In the Confucian tradition, human relations and people’s ties with nature surmount a rigid dichotomy between body and mind, inner and outer, or self and others. The cumulative effect of the Confucian approach to self-cultivation is not merely personal but collectively social and even cosmic. To further add, in Confucianism, the self is viewed as inherently social. Individuals’ identities and moral development are closely tied to their roles and responsibilities within the family, society, and community. In particular, Confucianism emphasizes the importance of five key relationships (ruler and subject, parent and child, husband and wife, older and younger siblings, and friends) as the foundation of social harmony and ethical conduct [22].

Some may argue that Confucianism places one of the strongest emphases on filial piety, which not only plays a significant role in shaping an individual’s self-identity within the family but also serves as a moral foundation of loyalty. Such loyalty extends from the family system to the relationships between subjects and rulers, students and teachers, apprentices and tradesmen, clients and patrons, and beneficiaries and benefactors. Hence, the “relational self” (关系自我 Guanxi Ziwo) is a widely recognized social fact in Confucianism as well as everyday social life in contemporary China. In understanding the relational self, there are both “vertical” (one’s identity as an individual) and the “horizontal” (one’s relationship with others) dimensions of oneself [23]. That is, people internalize interpersonal connections with others, making personal interests not one-dimensional and self-centered but others-centered as well [16]. In end-of-life care, relational self – or “relational autonomy” in the discourse on patient autonomy – is not a complete rejection of patient autonomy. Instead, it is a re-conceptualization of the patient’s decision-making that acknowledges their social embedment, especially with the family [15], [16], [17].

This study aims to better understand the role of filial piety and the concealment of medical information from patients by their families to examine the current state of end-of-life care communication and decision-making in mainland China.

Materials and methods

Results

Discussion

Filial piety was mentioned in 26.9 % of all interviews (n=94) with family caregivers and medical professionals, with multiple mentions in some interviews; it was mentioned 303 times across the interview database. Across the interviews, filial piety was intertwined with the family’s communication and decisions regarding their loved one’s end-of-life care. Filial piety emerged as a value that is both self- and externally enforced through the perceptions of others in the community. Furthermore, family members, especially adult children of elderly patients, are deeply engaged in end-of-life care, with filial piety underpinning their role as a protective mechanism in a healthcare system that draws a great deal of distrust from the public. Such familial ties are also exhibited through sibling devotion, as seen in Case Three. Filial piety motivated families to seek alternative solutions, such as searching for folk remedies and breaking the rules against companion care.

In terms of end-of-life care communication, family members typically prefer to be the first to receive medical information, which allows them to withhold that information from the patient based on the seriousness of the prognosis. Examples of concealment of medical information appeared 86 times (n=41, 11.7 %) in the interview database, with other adjacent examples found as well: 15 times for “lie,” five times for “coax,” 10 times for “do not tell,” and 17 times for hiding “truth.” The act of concealment was often underpinned by the family’s concern that their loved ones could not bear the bad news. When patients were not given a choice to learn the truth, this led to patients trying to find out about their conditions while white lies and a false sense of optimism continued. Furthermore, grandchildren were not told the truth, in case they accidently break the concealment or believe their grandparents should know the truth.

The tendency to withhold medical information from the patient creates a situation of “closed awareness of dying,” a term invented in 1965 by two American sociologists – Barney Glaser and Anselm Strauss – in reference to the lack of communication between doctors and patients about the latter’s critical conditions [26]. However, the cultural contexts of “closed awareness of dying” are rather different in China today from that of the United States in the past. The lack of communication between doctors and patients is largely due to the control of medical information and decisions by families, while the same problem in the United States nearly 60 years ago was due to the doctors’ reluctance and incompetence to discuss issues of pending death. To add, there were no instances of professional caregivers defying the family’s preferences for information sharing across the interview database. Some professionals commented on the double standard that exists in concealment, whereby family caregivers express the desire to know their own condition but are convinced that the patients would not want to know. When this happens, as illustrated in Case Five, patient autonomy – which includes the right to individual agency and personal decisions about their medical care – yields to the power of the family. In other words, a family’s control of medical information can often lead to family-controlled medical decisions. Ultimately, concealment may amplify psychological distress on top of physical suffering, leave regrets of the patient’s unfulfilled wishes for surviving family members, and create tensions that hinder end-of-life care practices for medical professionals.

In terms of end-of-life care decision-making, family members are at the forefront of medical decisions on behalf of their loved ones, with limited to no participation from the patients in their own medical care. Across the case studies, there were examples of pushing for intensive care, such as surgery and ostomy, and how end-of-life care decision-making was “everyone’s decision,” with “everyone” often excluding the patient. In particular, examples of opting for aggressive treatments – the more “filial” choice – occurred despite the doctor’s advice that there was no cure. Medical professionals constantly juggle the needs of patients and their family members. For example, in Case Six, the head nurse discussed how difficult it is for medical staff to maintain their professional authority and expert opinions, should families disagree with their recommendations for medical care. The family’s decisions seem to prevail in the absence of a structured process around communication and decision-making that can help professional caregivers regard patients as their primary responsibility and listen to their choices.

This study contributes to ongoing research on China’s end-of-life care through a rich database of interviews featuring the voices of those closest to the critically ill. China’s end-of-life care communication and decision-making should encompass the concept of relational autonomy without pitting individual values against family values. The first four cases illustrate how family members are deeply embedded in the communication and decision-making processes. At times, the extent to which they were involved – and the extent to which patients themselves were not – may indicate how the role of family members compromises patient autonomy. However, the emotional ties with loved ones cannot be stripped away from the patient’s personhood. Difficult medical decisions, especially near the end of life, can amplify the complexities around such ties. Therefore, the communication and decision-making processes could be re-imagined to elevate patient agency while still involving their loved ones. Such joint participation is necessary so that more Chinese patients could reach end-of-life medical decisions that are authentic and dignified and achieve the quality they hope for in their final stage of life.

The cases offer some ideas on translating relational autonomy into end-of-life care in the Chinese context. For instance, Case Seven demonstrates an experienced doctor who did not hesitate to disclose her prognosis and judgment of the best option for the patient – to go home rather than receive unnecessary intensive care in the hospital. Dr. Xu showed one approach to initiating open discussions about treatment and care options to prevent excessive medical interventions, which is challenging for doctors to determine alone. Therefore, a patient’s desire not to undergo unnecessary medical interventions and the family’s support are helpful for doctors to make appropriate decisions and respect the patient’s agency. Furthermore, Dr. Xu demonstrated how to gain the trust of the family members; trust plays an important role since advice by Chinese doctors regarding the termination of aggressive treatment or hospital discharge could be perceived by patients and their families as abandonment. In the social environment of medical care, where trust is at stake, the medical team can more holistically provide support. In Case Six, a nurse’s experience revealed how much more nurses may know, compared to doctors, about the patients and their families in terms of their personal relations, personality, financial status, and even conflicts.

It should be acknowledged that the study, which provides the basis for this paper, has some limitations. The family caregivers who participated in the interviews were not randomly selected. Instead, they were recruited through social networks of friends, former classmates, colleagues, and families. The professional caregivers represented only a few medical facilities among many hospitals, nursing homes, community health centers, and village clinics in China. Furthermore, inherent subjectivity was associated with how interviewees retroactively recalled personal or professional experiences. Some of these limitations could be overcome in a new round of research, while others would remain difficult to address, given the fact that interviewing people about death constitutes a particular challenge for researchers in China, as well as in other parts of the world. For this reason, the study that provides the basis for this paper may present a small breakthrough in the sense that hundreds of Chinese caregivers agreed to be interviewed about their experiences in end-of-life care and issues of death.

Conclusions

In the current landscape of end-of-life care in China, wider adoption of advanced care planning could help fill the void of discussing and respecting the patient’s wishes and care preferences. However, core to ACP is patient autonomy, which must be re-envisioned in the Chinese context. Patient autonomy is not of an individualistic nature in clinical settings in China, and it can hardly become a reality when relatives withhold medical information and make medical decisions. As suggested by the interview materials in this study, the concealment of medical information typically hinges on family members, often adult children, and their sense of filial piety. The role of family extends to proxy decision-making as well.

The way forward is not to adopt an individual-centered approach to medical information disclosure or medical decisions. Rather, an ideal option is a joint approach. There should be culturally sensitive dialogues that involve patients, relatives, and medical staff to build a consensus toward a common goal – the patient’s holistic well-being near the end of life. This goal cannot be materialized without patients having accurate and comprehensive information to express their care preferences and make informed medical decisions. This type of joint approach respects three types of necessity. These are the necessity for medical staff to apply their expertise for the well-being of their patients, the necessity for patients to maintain their autonomy and dignity, and the necessity for patients and their families to be guided by physicians in making optimal choices, instead of decisions that uphold filial piety at the expense of quality of life.

This journey toward patient-oriented, family-centered end-of-life care should draw inspiration from the Confucian concept of relational self and its relevance in interpreting and adopting the contemporary concept of relational autonomy. Historically and culturally, across many generations, the self has been viewed as inherently social and interpersonal in Chinese society. Other Asian countries and territories have similarly examined the critical role that family members and loved ones play in end-of-life care medical decision-making before adapting and integrating ACP into medical care. In particular, Hong Kong, Taiwan, and Singapore have valuable experiences to share since they started to promote a patient-oriented, family-centered ACP about two decades earlier than mainland China. These societies also have a strong Confucian tradition that is tightly linked with end-of-life care and ACP. In addition to ACP legislation, these examples can provide insights into the importance of ACP-related education for patients, families, medical professionals, and the public, buy-in from stakeholders across the healthcare ecosystem, and interdisciplinary teams to execute ACP. These components include information such as how discussions about end-of-life care should be conducted between doctors, patients, and families; why certain words should be avoided; where psychological counseling is available; education that develops skills, knowledge, and attitudes related to dying, death, and bereavement; and how patients should be looked after if they return home. ACP is only an approach – its uptake does not happen in a vacuum without complex social and cultural factors.

Ultimately, in China, a culturally tailored approach to ACP will need to emphasize not only individual autonomy but also one that pertains to the relational self and autonomy. For ACP to gain wider acceptance and become a sustainable part of medical services in the country, it must address how families and adult children of elderly patients play a role as important as patients and medical professionals. Only then could end-of-life care place individual agency on par with family responsibility motivated by filial piety.