Navigating the delicate balance of autonomy and harmony: a case study on the cultural adaptation of palliative care interventions in China

Abstract

Background

The implementation of palliative care in China faces distinct challenges influenced by cultural and societal factors that significantly affect terminally ill patients and their families. This case study examines how palliative care interventions adapted to Chinese cultural factors such as death taboos, indirect communication styles, family-centered decision-making, and relational harmony helped empower a patient’s autonomy, facilitate self-expression, and support personal transformation while aligning with Chinese cultural norms.

Methods

This retrospective study utilized Interpretative Phenomenological Analysis (IPA) to conduct a thorough qualitative investigation of a single case, focusing on how a Chinese terminal cancer patient engaged with and responded to culturally adapted palliative care interventions. The data encompassed notes and audiovisual materials produced throughout the patient’s palliative care process, supplemented by targeted retrospective data collection. The data, originally in Chinese, were translated into English for analysis, using back-translation and independent verification to maintain linguistic and cultural accuracy.

Results

This study identified three critical mechanisms through which culturally adapted palliative care enhanced the patient’s autonomy and facilitated personal transformation while maintaining relational harmony. The three mechanisms were: (1) a guided card game facilitating autonomous decision-making, (2) spiritual dialogues facilitating self-discovery and transformation, and (3) a communal concert balancing individual expression with relational harmony. Together, these mechanisms empowered the patient to assert personal autonomy and attain meaningful self-expression, all while maintaining significant involvement from family and community.

Conclusions

This study underscores the critical role of cultural adaptation in implementing palliative care interventions for Chinese patients. The findings demonstrate that culturally adapted palliative care interventions, grounded in relational autonomy, effectively supported a Chinese patient’s autonomy and personal transformation while maintaining relational harmony. These insights are instrumental in informing the provision of culturally adaptive end-of-life care practices in Chinese healthcare.

Background

Palliative care has become an increasingly crucial component of healthcare in China as the country contends with an aging population and the growing burden of life-threatening illnesses. For example, recent estimates indicate that China had around 4,824,700 new cancer cases and 2,574,200 cancer deaths in 2022, highlighting the critical demand for extensive palliative care in the country [13]. However, implementing palliative care in China requires navigating a complex cultural landscape shaped by deeply rooted traditions and social norms [12]. These cultural factors, heavily influenced by Confucian ethics and other traditions [35, 40], can significantly impact the beliefs, values, and preferences of Chinese patients and their families when it comes to end-of-life care [7, 26]. Understanding these cultural nuances is paramount for developing and implementing effective palliative care programs that adequately respond to the needs of Chinese patients and their families.

Research indicates that Chinese cultural beliefs and practices significantly shape patient autonomy and decision-making patterns. Beauchamp & Childress [1] define autonomy as intentional action undertaken with understanding and free from controlling influences. This individualistic viewpoint generally clashes with Chinese values, where collective unity and relational harmony typically precede personal preferences [38]. Although patients desire emotional and spiritual support and the right to make informed decisions about their care [41], family-centered decision-making often overrides individual autonomy. Research indicates that patients with terminal cancer in China prioritize better quality of life and moderate life extension rather than aggressive treatments. In contrast, their family caregivers often prefer more intensive interventions [23].

The notion of relational autonomy, as articulated by Mackenzie and Stoljar [28], better aligns with the Chinese context. It perceives autonomy as fundamentally social, influenced by relationships and cultural contexts, and emphasizes the interpersonal dimensions of healthcare, particularly in end-of-life care [11].

Furthermore, the pervasive social taboos associated with conversations regarding death and dying present substantial barriers for healthcare providers attempting to initiate open and honest dialogues about prognosis, treatment options, and end-of-life planning, all of which are essential elements of effective palliative care. Chinese communication relies heavily on indirect and roundabout methods, with messages often conveyed through nonverbal cues such as body language, silence, and facial expressions [8]. Lu et al. [27] observe that many Chinese patients perceive palliative care as an indication that their healthcare providers have given up on them, reinforcing these taboos. Additionally, families face tensions between traditional values such as filial piety and the medical need for open communication [22]. These cultural factors pose considerable challenges for healthcare providers seeking to deliver effective palliative care interventions to Chinese patients and their families [12, 25, 34].

Spirituality is a cornerstone of the biopsychosocial-spiritual model of palliative care [32]. Puchalski et al. [42] define spirituality as “the aspect of humanity that refers to the way individuals seek and express meaning and purpose and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred,” inclusive of “philosophical, religious, spiritual, and existential issues that arise in the clinical setting.”

In China, spirituality is conceived as a harmonious connection with oneself, others, and nature. It places a significant emphasis on self-transcendence achieved through a journey of helping others and self-cultivation, as influenced by the principles of Buddhism and Confucianism [30]. Cheng et al. [6] identify six spiritual needs in Chinese patients with advanced cancer: being treated as normal and independent individuals, receiving and giving love, seeking inner peace, connecting with spiritual sources, finding meaning and purpose, and preparing for death. Despite its importance, implementing spiritual care in China confronts barriers such as inadequate workforce and resources, insufficient knowledge and skills, a lack of managerial support, and cultural considerations [30].

These studies indicate that effective palliative care in China must balance patients’ individual needs with Chinese cultural factors, including death taboos, indirect communication styles, family-centered decision-making, and the importance of relational harmony. Implementing palliative care in China thus requires cultural adaptation, defined as the systematic modification of intervention protocols to align with a patient’s language, cultural patterns, meanings, and values [3]. These adaptations are crucial to preempt misunderstandings, conflicts, and suboptimal care experiences [14, 19, 37].

This study addresses a critical gap in the current understanding of Chinese patients’ autonomy in end-of-life care by examining practical and actionable palliative care interventions based on relational autonomy that effectively navigated these Chinese cultural challenges. Through comprehensive analysis of a single case, this research investigates how culturally adapted palliative care interventions empowered a patient in end-of-life decision-making, facilitated meaningful emotional expression within cultural frameworks, and encouraged personal discovery and transformation, all while preserving relational harmony.

Methods

This study utilized a qualitative single-case design and Interpretative Phenomenological Analysis (IPA) to explore how culturally adapted palliative care interventions supported patient autonomy, self-expression, and personal transformation. IPA’s idiographic and hermeneutic emphasis [31] offered an excellent framework for understanding the intricate relationship between individual experience and cultural context in end-of-life care. The single-case design enabled a thorough exploration of these phenomena within their natural environment while utilizing multiple sources of evidence [36].

The research was conducted in the inpatient palliative care unit of a major hospital in Beijing. The participant, referred to by the pseudonym “Lin,” was a woman in her 40s from southern China who worked as a white-collar professional prior to being diagnosed with pancreatic cancer and multiple metastases. Informed of her diagnosis and prognosis, Lin traveled to Beijing for treatment, accompanied by her husband and parents, while her teenage son stayed home with his paternal grandparents. About two months following her initial outpatient consultation, Lin was admitted to the palliative care unit, where she stayed for approximately one month until her passing.

This study was approved by the Ethics Committee of Beijing Tsinghua Changgung Hospital (Approval number: 25012–6-01). It was conducted in accordance with China’s Measures for Ethical Review of Life Science and Medical Research Involving Human Being (2023), the WMA Declaration of Helsinki (2013), and the International Ethical Guidelines for Biomedical Research Involving Human Subjects by CIOMS. As this study was conducted retrospectively and posthumously, Lin’s husband provided written authorization for the study, the use of notes and audiovisual materials, and publication.

This retrospective case study employed data generated during Lin’s palliative care process, supplemented by targeted retrospective data collection. Data sources included pre-existing notes and audiovisual materials capturing Lin’s experiences, as well as retrospective notes. These encompassed: (1) notes from four spiritual care sessions (approximately seven hours); (2) observational notes from a three-hour concert, “Toast to Youth”; (3) 58 minutes of video recordings captured by the palliative care team, documenting conversations and concert footage, with Lin and her family’s verbal consent for memory-keeping and further use subject to approval; (4) a five-minute documentary and an eight-minute television interview produced by two independent third-party media organizations,1 featuring spiritual care sessions, family interactions, and Lin’s palliative care experience; and (5) retrospective notes from spiritual care provider and researcher Zuo on a guided card game workshop, alongside notes from Lin’s doctor, case manager, and social worker on patient assessments, family meetings, and intervention evaluations. The spiritual care sessions and concert observations provided direct insights into Lin’s experiences, while audiovisual materials offered broader perspectives on her narrative. Retrospective notes addressed gaps in pre-existing data, facilitating the triangulation of perspectives to enhance the validity and depth of the findings.

Two independent third-party media organizations, engaged by Lin and her family, obtained separate written informed consent from Lin, her husband, and her parents for the documentary and television interview. The palliative care team, unaffiliated with these organizations and having no monetary transactions with them, facilitated introductions but did not influence participation, ensuring no conflicts of interest or impact on care quality. The research team is unaware of any monetary transactions between the media organizations and Lin or her family. Lin’s participation in the media coverage was voluntary and did not affect the quality of her care.

The researchers conducted a rigorous, inductive analysis using IPA through the following steps: (1) initial reading and notation of data; (2) identification of emergent themes through line-by-line analysis; (3) development and refinement of connections across themes; and (4) cross-validation of interpretations among research team members. The research team held regular meetings to discuss emerging findings and resolve any discrepancies in interpretation. Researcher Zuo, fluent in English and Chinese, first reviewed the Chinese-language data to gain familiarity with cultural and linguistic nuances, noting significant expressions and linguistic patterns. Zuo then translated all Chinese data into English for analysis, preserving contextual subtleties (e.g., translating “我可以放心了” as “I can be at ease now,” capturing “放心” as peace of mind within relational harmony). Back-translation helped verify accuracy, and a bilingual colleague (Yeap) independently reviewed translations to ensure the essence of meanings was preserved. While data were analyzed in English to streamline coding, theme development, and reporting in an English-language publication, the research team noted that analyzing data in Chinese initially could further enhance linguistic fidelity in future studies.

The data sources provided rich insights into Lin’s emotional and spiritual journey. Nevertheless, the retrospective nature of the case study posed a risk of potential recall bias, which the researchers addressed by primarily utilizing real-time data generated during Lin’s palliative care process, supplemented by targeted retrospective data collection. Additionally, the researchers’ cultural backgrounds and potential biases may have influenced data interpretation. To enhance trustworthiness, the team employed triangulation across multiple data sources. Nonetheless, the transferability of findings should be considered within the distinct cultural and personal factors that shaped Lin’s experiences.

Results

During Lin’s initial outpatient consultation, the chief physician (Lu) and the case manager conducted a verbal evaluation encompassing a variety of biopsychosocial-spiritual dimensions. These dimensions included physical conditions, cognitive status, living environment, psychological status, social and economic circumstances, spiritual status, receptivity to palliative care, family dynamics, caregiver designation, and decision-making authority. This holistic evaluation adhered to patient-centered care principles, ensuring a thorough understanding of Lin’s needs and preferences.

The assessment revealed Lin’s values, family dynamics, and cultural barriers that informed the palliative care team’s culturally adapted strategy to support Lin’s autonomy while fostering relational harmony. Previously a white-collar professional in her 40s from southern China, Lin hailed from a financially stable family. She highly valued family companionship and described her family as harmonious. Her husband and parents took turns as caregivers, with her husband appointed as her medical decision-maker if she became incapacitated. Her primary concern was her son’s ability to cope with her death. Although she actively chose palliative care, her mother showed visible distress over her illness, while her father and husband initially opposed palliative care in favor of further treatment such as chemotherapy. In addition to symptom management, Lin requested the palliative care team’s support to promote candid discussions about death within her family, encourage emotional expression among family members, and preserve audiovisual memories for her loved ones. Her requests reflected her struggles with death taboos, indirect communication styles, and reconciliation between personal preferences and family-centered decision-making.

A thorough phenomenological analysis identified three main themes demonstrating how culturally adapted palliative care interventions supported Lin’s autonomy and personal transformation: (1) a guided card game facilitating autonomous decision-making, (2) spiritual dialogues facilitating self-discovery and transformation, and (3) a communal concert balancing individual expression with relational harmony. Table 1 delineates the intervention timeline and details, followed by detailed analyses of each intervention.

Table 1.

Intervention Timeline and Details

Phase	Timing	Interventions	Personnel	Cultural Adaptations	Outcomes
Outpatient Consultation	2 months before inpatient admission	Guided Card Game Workshop	Spiritual care provider (Zuo)	1. Linguistic Adaptation: Translated materials from English to bilingual (Chinese and English) to ensure accessibility and comprehension 2. Content Adaptation: Modified prompts to reflect Chinese cultural characteristics (e.g. from “to meet with a clergy or chaplain” to “I want to talk with someone about my spiritual needs”) 3. Framing Adaptation: Shifted phrasing from directive (“to do”) to preference-based (“I want”) to emphasize the player’s agency	Initiated agency in decision-making
Inpatient Admission: Pre-Intervention	Week 0	Family Meeting	Chief physician (Lu) and the palliative care team	Family-Inclusive Facilitation: Formal discussions incorporating family members’ perspectives while centering the patient’s voice	Fostered family consensus
Intervention Implementation	Weeks 1–6	Spiritual Dialogues	Zuo and Lu	1. Respect for Collectivist Values: Acknowledged cultural tendencies, particularly among Chinese mothers, to prioritize family (e.g., children’s well-being) over self, framing dialogues to balance familial duties with personal reflection 2. Reflective Practices: Employed compassionate listening and guided introspection to foster self-discovery, drawing upon Buddhist and Confucian principles of self-transcendence and inner peace	Facilitated self-discovery and transformation
Intervention Implementation	Weeks 1–3	Concert Planning	Zuo, Lu, Lin’s family and classmates, the palliative care team, and volunteers	1. Communal Engagement: Positioned collaborative planning as a means to strengthen collective purpose and relational bonds, reinforcing community identity in line with collectivist values 2. Emotional Prioritization: Enabled the patient to focus on alleviating family members’ grief while creating shared positive memories, aligning with cultural expectations of familial responsibility	Strengthened relational bonds
Intervention Implementation	Week 3	“Toast to Youth” Music Party	Zuo, Lu, Lin’s family and classmates, the palliative care team, and volunteers	1. Communal Celebration Design: Crafted an event that fulfilled the patient’s personal aspirations while facilitating the Chinese cultural practice of collective meaning-making 2. Culturally Sensitive Emotional Expression: Provided a safe space for indirect emotional communication through song lyrics and nonverbal cues, respecting cultural norms of subtlety and restraint in emotional displays	Achieved relational healing

A guided card game facilitating autonomous decision-making

The palliative care team’s culturally adapted use of a guided card game, in conjunction with advance care planning (ACP) and a bucket list, facilitated Lin’s articulation and execution of her preferred care plan. During the initial outpatient consultation with the chief physician (Lu), Lin learned about an opportunity to engage in a guided card game workshop on end-of-life preferences facilitated by the spiritual care provider (Zuo). She requested to participate in the workshop without her family members. The card game, accompanied by internal family discussions and a subsequent formal family meeting, functioned as a pivotal mechanism to facilitate her autonomous decision-making. This approach aligned with her cultural values, promoting family engagement while honoring her relational identity.

The Heart to Heart card game was selected for its therapeutic efficacy in enabling structured end-of-life discussions and its cultural acceptability in China [10]. Adapted from the English-language Go Wish cards, the game features a 54-card deck with bilingual (Chinese and English) prompts tailored to Chinese cultural contexts [24]. The deck contains 13 Spades for physical needs, 13 Hearts for spiritual needs, 13 Diamonds for financial needs, 13 Clubs for social needs, and two Jokers as “special wish” cards for any other needs not already included in the deck. Adaptations include replacing prompts like “to meet with a clergy or chaplain” in Go Wish with “I want to talk with someone about my spiritual needs” in Heart to Heart, reflecting diverse spiritual support sources in Chinese culture. Additionally, the game uniformly shifted phrasing from directive (“to do”) to preference-based (“I want”), emphasizing the player’s agency. By framing end-of-life discussions as value-based choices, the game moderates cultural taboos surrounding death, fostering open and meaningful dialogue.

During the card game session, Zuo verbally guided Lin to meticulously select three cards from each of the four suits and list the 12 cards from the most to the least important. Zuo then invited Lin to share why these selections were important to her. During the discussion, Lin was encouraged to modify her selections as she saw fit or identify additional personal preferences not printed on the cards. After Lin had finalized and recorded her selections, this process culminated in Lin completing “My Five Wishes”—a Chinese-translated and adapted advance directive by the Beijing Living Will Promotion Association—and a personalized bucket list, charting a clear path forward for Lin: “After that session, I felt much clearer about many things. I’ve already completed some items on my list and signed ‘My Five Wishes.’”

The guided card game, ACP, and a bucket list facilitated constructive dialogue and consensus-building within Lin’s family. Before these interventions, Lin faced a dilemma in her treatment decision between her husband’s wish and her personal preferences: “Earlier, my husband wanted me to do chemotherapy, but with chemotherapy, I was lying in bed all day and couldn’t do anything. It was so terribly boring. I’d rather spend this limited time doing things I actually want to do.” According to Lin, her participation in the Heart to Heart card game enabled her to systematically articulate her end-of-life priorities, which she later discussed with her husband and parents while reviewing her advance directive. This preparatory communication process laid the foundation for consensus during a formal family meeting, which was organized by the palliative care team upon Lin’s inpatient admission two months after the card game.

During the family meeting, Lin clearly outlined five key wishes from her advance directive, emphasizing minimal aggressive treatment and specifying approved visitors. Her father read a prepared written statement to formally affirm her choices and express his love. Her husband, recognizing the diminishing benefits of chemotherapy and the increasing value of palliative care as Lin’s illness progressed in the past two months, also honored her preferences. Lin recalled his shift in perspective: “Like during our family meeting the other day, he just said he’d go along with whatever I want, and he’ll continue to do so.”

The Heart to Heart card game enabled Lin to exercise agency and to thoughtfully consider and articulate her end-of-life preferences, which were formalized in her advance directive. The palliative care team’s facilitation of open communication through the card game and family meeting bridged the initial familial discord, leveraging shared familial love to build consensus in support of Lin’s autonomy.

Spiritual dialogues facilitating self-discovery and transformation

The palliative care team’s integration of spirituality through dialogues proved instrumental in nurturing Lin’s autonomous development and self-discovery. Despite the limited time, these spiritual dialogues played a pivotal role in fostering Lin’s autonomy during her end-of-life journey while respecting her cultural frameworks. Following the guided card game intervention, Lin initiated her first meeting with Zuo by requesting to discuss her son. During the session, Zuo observed that Lin focused exclusively on her son rather than herself—a characteristic tendency among Chinese mothers. Instead of steering the discussion away from the subject, Zuo recognized this cultural tendency and continued from Lin’s selected starting point. Lin reflected: “I used to focus solely on his studies, and our family atmosphere was quite strict and serious, lacking ease and ritual.” When Zuo interpreted this as potential regret, Lin confirmed: “Yes. That’s why I want to make up for it now.” She added that her biggest wish at the moment was to hold a coming-of-age ceremony for her son on his birthday.

In their subsequent meeting a week later, however, Lin informed Zuo that after talking to her son, she decided to respect her son’s preference for a simple family dinner over a ceremony. This decision prompted a pivotal shift in her focus toward personal desires: “Then I started thinking, what would I like to do for myself? I’ve always wanted to attend a concert, but I’ve been too busy and kept saying I’d go after my son’s college entrance exam…So, this time, I want to have a music party, invite some classmates and friends, and really ‘get high’ for once.” Lin expressed to both Lu and Zuo her wish to host a private concert for herself, signifying her self-awakening to reclaim the leisure and personal enjoyment she had previously postponed.

Recognizing an opportunity to encourage deeper introspection, Lu and Zuo invited Lin to articulate the rationale behind her idea, thereby revealing a narrative of personal transformation in three stages: First, Lin reflected on a past characterized by conformity, describing herself as a “perfect good girl” who strictly adhered to social expectations, even in mundane details like maintaining a short hairstyle. After marriage and having a child, she continued to lead what she called a “rigid” lifestyle, suppressing her desires and self-expression. Second, Lin deeply acknowledged her lost identity, reflecting: “I was lost. I never lived for myself. Truly, I never lived for myself.” Finally, Lin exhibited a heightened sense of self-agency, asserting, “Then I thought, this time I must, no matter what, and when I decide to do something, I do it right away because I don’t have time to wait anymore.” This statement suggests a newfound resolve to act decisively on her choices, aware of her limited remaining time. Linguistic analysis also revealed significant markers of this transformation, particularly in her emphatic use of temporal contrasts (“never” versus “must”) and the recurring metaphorical expression “get high,” which suggests a newfound liberation from cultural and social constraints.

The palliative care team began collaborating with Lin and her family to plan the concert. These preparations evolved into a spiritual journey of self-awakening and reconnection. Lu and Zuo cultivated an environment of openness, encouraging Lin to express all her ideas and emphasizing the importance of executing the concert exactly as she envisioned. Lin named the concert the “Toast to Youth” music party, citing her wish to recapture “that feeling from back then—something pure and beautiful, with a youthful atmosphere.” She also personally selected a venue—a guesthouse with a courtyard and lawns—and specified decorative elements, including fresh flowers and fairy lights. This level of self-expression and autonomy was new territory for Lin, as she noted to Zuo: “You see, I’m making so many requests now—I wasn’t like this before. I didn’t express myself so much.”

The communal aspect of the concert also held particular significance for Lin, who extended invitations to close family members and friends. Initially hesitant about calling former classmates, Lin shared her concerns with Lu: “I was wondering, I’ve never attended class reunions before, and now that I need them, will they come?” Her vulnerability was met with overwhelming support, as she recounted: “The next morning, I called several classmates, and their response was so touching—they said, ‘Don’t worry, we'll be there no matter what.’ I felt so moved. I said, I’m actually quite afraid of expressing myself in front of many people, but under these circumstances, I have to express what’s in my heart no matter what. It really means so much that everyone would set aside their work and come from so far away.”

The concert planning process empowered Lin to reconcile her personal desires with her family responsibility and relational harmony, reinforcing her relational identity within her community. By collaboratively organizing the event—encompassing tasks such as inviting a band, arranging catering, sending invitations, and decorating the venue—Lin engaged her family, classmates, and the palliative care team in a shared endeavor that fostered a collective sense of purpose and communal bonds. This collaborative effort aligned with Chinese cultural norms emphasizing familial interconnectedness and social cohesion, allowing Lin to fulfill her roles as a daughter, wife, mother, and friend while pursuing her personal wish for a joyful, music-centered gathering. In a conversation with Zuo, Lin reflected: “Planning a music party is much more fun than planning a funeral. Because with this music party, I can still participate and enjoy it, and the atmosphere is happier. The funeral should be kept simple to avoid piercing my family’s hearts again.” This statement underscores how the concert planning process enabled Lin to prioritize her family’s emotional well-being, aligning with her responsibility to alleviate their sorrow while creating shared positive memories. By focusing on collective participation and fostering emotional connections, the process facilitated relational healing and enhanced familial and social bonds even prior to the concert.

A communal concert balancing individual expression with relational harmony

The “Toast to Youth” music party, designed as a communal celebration, served as a vehicle for Lin’s autonomous expression while preserving relational harmony. While the format of a music concert might seem universal, the choice of such a format both fulfilled Lin’s personal wish and aligned with Chinese cultural practices of collective meaning-making and indirect emotional expression. Executed by the palliative care team and Lin’s family according to her detailed preferences, the concert became a carefully orchestrated ritual space that facilitated personal expression through curated musical selections and collective emotional catharsis. Lin articulated the intentional nature of this conducive environment: “At this music party, everything we want to say and do, we can all freely share and create memories.”

Music provided a culturally appropriate medium for Lin to convey deeply personal messages without overstepping her comfortable social boundaries. When Zuo inquired whether Lin would like to list specific songs for the band to perform, Lin initially asked Zuo for recommendations, still holding back her personal preferences. Zuo then encouraged Lin to “brainstorm together,” and she consequently selected multiple songs that viscerally reflected her emotional and spiritual journey. For example, the song “The Hill” captured her sense of loss amid life’s brevity: “Tirelessly climbing every hill/Though my hair has turned white crossing these hills/Endless laments about time not waiting/Haven’t yet seen immortality/But have already lost myself.” Conversely, in “Life Blooming Fiercely,” she expressed her self-awakening and pursuit of freedom: “Now I no longer feel lost/I want to transcend this ordinary dream/I want my life to bloom fiercely/Like flying in the vast sky/Like traveling through boundless wilderness/Possessing the strength to break free from everything.” These emotionally intense statements, which could be disruptive if expressed directly, gained social acceptance when conveyed through song lyrics performed by others.

The concert featured bittersweet performances by Lin’s classmates and palliative care team members, who expressed gratitude and wishes through songs about friendship, freedom, and memory. A particularly moving moment occurred when Lin’s husband, though silent in speech, sang “Has Anyone Told You”: “Has anyone ever told you how much I love you/Has anyone ever cried in your diary/Has anyone ever told you how much I care/Care about the distance between our cities.” This moment of vulnerability and love declared through the song had a powerful effect on Lin, causing her to weep openly. To add symbolic weight to the moment, he also handed her a rose, to which she said to the audience: “This is the first time he’s ever given me flowers.”

Lin’s father’s performance of the song “Sunset Red” marked another emotional pinnacle. He explicitly said “I love you” to Lin in his opening speech, followed by singing these lines through tears: “Sunset is love that came too late/Feelings yet unfinished/How much love transforms into a sunset’s red glow.” After this song, Lin’s mother, who opted not to sing, enacted a powerful nonverbal ritual by silently walking to Lin, holding her face with both hands, and pressing their foreheads together in shared tears.

In her concert speech, Lin expressed profound gratitude:

Thank you everyone for putting aside your work to gather here today. To all the distinguished guests, classmates, and band members who helped fulfill my wish of having my own music party, I’m especially grateful. Here, I must also thank [the palliative care team]. You’ve not only helped treat my physical pain but also helped my family and me address our emotional pain. Thank you to the…volunteers who, since my illness began, have given me the confidence to live positively and have the courage to persevere. Finally, I want to thank my family, friends, and classmates. After I became ill, thank you for your meticulous care, encouragement, and companionship. I’m grateful for having met you all.

A 2024 Beijing Public Service Radio documentary recorded Lin’s additional reflection after the concert: “I just feel that if I hadn’t fallen ill, when would we ever have time to all sit together and slow down like this? It was beyond my expectations—that kind of fulfillment was way beyond what I expected, way beyond what I expected.” [2].

The concert succeeded in cultivating and strengthening Lin’s relational bonds with her family and friends. It served as a mechanism for Lin to fulfill her emotional and spiritual needs while maintaining relational harmony with her loved ones.

The three mechanisms—a guided card game, spiritual dialogues, and a communal concert—formed an integrated approach to supporting Lin’s autonomy and transformation. They worked synergistically: the card game provided a foundation for decision-making, spiritual dialogues offered opportunities for personal reflection and expression, and the concert formalized meaning-making and transformation. This integration allowed Lin to make meaningful choices aligned with her personal desires and cultural values. It also culminated in Lin’s conceptualization of peace, as she shared in a 2024 interview with CCTV-10: “Hospice care is about finding a final resting place for your heart—letting myself find that final resting place. I can be at ease now.”[5].

Discussion

This case study illuminates the intricate process of navigating patient autonomy within Chinese cultural frameworks emphasizing collectivity and relational harmony. The findings demonstrate the efficacy of culturally adapted palliative care interventions in empowering a terminally ill Chinese patient, Lin, to exercise autonomy, express herself, and experience personal transformation within her cultural context. These outcomes align with relational autonomy’s emphasis on social and cultural relationships [28]. The guided card game, spiritual dialogues, and the concert supported Lin’s autonomy while maintaining familial harmony, challenging individualistic autonomy models [1].

Lin faced challenges in balancing the cultural expectations of her collectivist society—particularly the emphasis on family-centered decision-making [22, 35]—with her individual preferences. This tension was clearly manifested in her treatment decisions: her husband wanted her to continue chemotherapy while she opted for palliative and hospice care. Her experience reflects the broader pattern in Chinese palliative care, where family caregivers typically favor more aggressive interventions, while terminal cancer patients often prefer treatments prioritizing quality of life [23]. This tension underscores the limitations of advocating for a purely individualistic notion of autonomy in the Chinese context, where relational autonomy—influenced by social relationships and cultural norms—offers a more fitting framework [11].

The palliative care team utilized Chinese culturally adapted tools—such as a guided card game and ACP—and organized a family meeting to keep Lin’s voice central and maintain relational harmony. The guided card game facilitated Lin’s discovery and expression of end-of-life wishes, an area often sidestepped in Chinese culture due to the discomfort surrounding discussions of death [24]. This intervention offers a structured and sensitive approach to delving into patient preferences and priorities [29]. It also prepared Lin to formalize her preferences by signing the advance directive and initiating related family discussions. This was particularly significant given a recent cross-sectional study at a Beijing tertiary cancer hospital shows that more than 80% of advanced cancer patients have never heard of or talked about advance care planning and that its education and implementation remain challenging [17]. The guided card game created a safe environment for Lin to reflect and express her desires. It served as an accessible conduit to the frequently unfamiliar subject of ACP, empowering Lin’s decision-making process and fostering a mutual understanding among her primary family members. Healthcare professionals can thus utilize the cultural significance of family and social unity to develop a family-centric model that aligns with the patient’s needs and preferences [10, 21].

The integration of spiritual care became a crucial component in Lin’s transformative journey, affirming the role of spiritual well-being in the clinical setting [42]. Through spiritual conversations, the palliative care team created a safe space for Lin to reflect on her life and address unmet needs, fulfilling key spiritual needs identified by Cheng et al. [6], such as receiving and giving love, seeking inner peace, finding meaning and purpose, and preparing for death. This process empowered Lin’s autonomy and facilitated personal discovery and transformation, aligning harmoniously with traditional Chinese philosophies that emphasize the importance of self-cultivation [20, 30, 40]. The team’s culturally adaptive strategy reduced barriers to spiritual care including unease around direct discussions of death and preference for indirect communication styles [8, 30] by leveraging reflective practices and compassionate listening [6, 16].

The “Toast to Youth” music party, a profound communal event, exemplified the integration of Lin’s personal wishes with family and community participation, reinforcing relational harmony while allowing individual emotional expression. This event aligns with the cultural adaptation framework [3], which advocates modifying interventions to reflect patients’ cultural values and practices. Instead of promoting potentially disruptive emotional displays, the palliative care team worked alongside Lin and her family to identify culturally acceptable methods for processing grief, fear, and other end-of-life issues [4, 39] through song lyrics and nonverbal cues. The concert’s ritualistic setting encouraged emotional expression, reinforced family connections, and offered a sense of closure for Lin and her loved ones [15, 18, 33]. This intervention challenges the notion of autonomy as devoid of controlling influences [1], showing that autonomy in the Chinese context is intrinsically relational, influenced by family and community ties.

The findings emphasize the vital role of cultural competency among healthcare providers. It allows them to promote patient-centered decision-making that acknowledges and integrates the distinctive cultural factors influencing patients and their families. Instead of relying on standardized protocols, providers should cultivate a flexible and nuanced understanding of cultural dynamics and their influence on patient autonomy, decision-making, and end-of-life experiences [9, 25].

This case study may have limited generalizability as Lin’s demographics and openness to spiritual care might not reflect typical Chinese palliative patients. Future research should involve larger and more diverse patient samples to further validate the effectiveness of culturally adapted interventions. Moreover, cross-cultural comparative studies and case studies examining both successful and challenging cultural adaptations would offer valuable insights.

Conclusions

This case study demonstrates that culturally adapted palliative care, grounded in relational autonomy, effectively empowered a Chinese patient to navigate end-of-life decisions while preserving cultural values of collective unity and relational harmony. By integrating a Chinese culturally adapted guided card game, spiritual dialogues, and a communal “Toast to Youth” concert, the interventions facilitated the patient’s ability to articulate end-of-life preferences, engage in personal discovery and transformation, and foster emotional expression while strengthening familial and communal bonds. These findings underscore the significance of cultural adaptation in providing effective end-of-life care that honors both individual needs and cultural contexts.

Authors’ contributions

TZ and SY conceptualized the study. TZ led the methodology and data analysis. TZ and SY conducted the literature review and co-wrote the manuscript. GL supervised the project and reviewed the manuscript. All authors read and approved the final manuscript.

Funding

This study was supported by a charitable grant from Beijing Zhicheng Social Organization Service Center. The funding organization had no role in the study design, data collection, analysis, interpretation, or manuscript writing. The research team maintains complete independence from the funding source and declares no conflicts of interest that could have influenced the study outcomes.

Data availability

Data and materials are available upon reasonable request, subject to privacy restrictions and the patient’s family’s consent.

Declarations

Ethics approval and consent to participate

This study was approved by the Ethics Committee of Beijing Tsinghua Changgung Hospital (Approval number: 25012–6-01) and was conducted in accordance with China’s Measures for Ethical Review of Life Science and Medical Research Involving Human Being (2023), the WMA Declaration of Helsinki (2013), and the International Ethical Guidelines for Biomedical Research Involving Human Subjects by CIOMS. As this study was conducted retrospectively and posthumously, the deceased patient’s husband provided written authorization for the study, the use of notes and audiovisual materials, and publication.

Consent for publication

Written consent for publication was obtained from the deceased patient’s husband, who approved the use of the patient’s data in this study while maintaining anonymity.

Competing interests

The authors declare no competing interests.