Abstract
Background:
Barriers to palliative care access may threaten well-being throughout the serious illness course. Chinese patients were likely to receive aggressive measures near the end of life and have limited knowledge of palliative care resources.
Objective:
We conducted a qualitative study aimed at exploring perspectives on the serious illness experience and palliative care among Chinese-heritage patients and caregivers.
Design:
Anderson’s Access-to-Care framework informed study design and the interview guide we used for individual semistructured interviews.
Setting/Subjects:
Following recruitment through referrals by providers and community partners, we conducted 27 virtual semistructured interviews with Chinese-heritage patients (n = 13) and caregivers (n = 14) in the United States facing serious illness between 2022 and 2023. We conducted inductive content analyses with dual review.
Results:
Four themes formed the basis of perceptions on serious illness and palliative care held by patients and families of Chinese heritage. Theme 1: Culturally based factors influence Chinese-heritage patients and families’ understanding of serious illness and palliative care, including language preference, acculturation, and values regarding family dynamics. Theme 2: Chinese-heritage patients and families express challenges in addressing psychological and emotional stresses associated with serious illness. Theme 3: Chinese and Chinese Americans attempt diverse coping strategies, including faith, spirituality, and self-care rooted in Traditional Chinese Medicine practices. Theme 4: Existing social support structures are strongly relied upon within the Chinese community.
Conclusions:
Our study of perspectives on serious illness and palliative care revealed Chinese cultural values and beliefs underpinning health service use and palliative care acceptance. Culturally attuned approaches to improve awareness and utilization of palliative care resources are needed for Chinese-heritage patients and caregivers facing serious illness. Various opportunities include addressing deep-seated cultural values, improving emotional well-being, and developing existing social and self-care systems within the Chinese community.
Key Message
Chinese patients and families do not utilize palliative care (PC) resources as often as the general population. This study aims to explore perspectives on serious illness and PC held by Chinese-heritage patients and caregivers. From 27 semistructured interviews, we identified themes about uniquely Chinese cultural beliefs and practices, including values about family dynamics, psychological impact from illness, spiritual and self-care practices, and social support.
Introduction
Palliative care focuses on comfort, coping, and quality of life, providing support to both patients and family caregivers. Poor communication and various barriers to palliative care access threaten quality of care and outcomes of care delivery, as the equipoise of support and medical intervention changes throughout the serious illness course.
However, patients from racial and ethnic minority groups are often less aware of palliative care as a resource for support, less likely to use palliative care, and more likely to report poorer quality palliative care when received. 1 Compared to white patients, patients from minority backgrounds are more likely to die in the hospital, and only 28.1% of Asian American Medicare beneficiaries used hospice services at the end of life.2–4 Furthermore, the pattern of initiating palliative care late in the serious illness course was demonstrated more commonly by ethnically Chinese patients compared to non-Chinese people. 5 Among Chinese-heritage patients with serious illness, such as advanced cancer, these patients were also more likely to pursue life-sustaining treatments.6–8 Asians were also less likely to communicate about goals, and Chinese patients with low acculturation have limited knowledge of advance care planning.9,10 These discrepancies may undermine well-being in later life for patients and families hailing from Chinese backgrounds.
Identifying gaps in palliative care utilization with a lens attentive to culture is crucial when interfacing with Chinese-heritage patients and families. Numerous factors may contribute to the perpetuation and exacerbation of discrepancies in palliative care resources accessed and used, including the impacts of culture-specific beliefs and values regarding experiences of illness, death, and dying.11,12 Culture encompasses “a dynamic framework” that represents a manifestation of shared drives, values, and beliefs that characterize identity for group members.13,14 Cultural identity can color anything from a patient’s perception of serious illness and end-of-life care to their preferences for medical and surgical treatments.
To understand how underlying cultural beliefs impact palliative care use, this study aims to draw perspectives directly from seriously ill patients and caregivers from Chinese backgrounds who are currently living in the United States. We suspect that unique Chinese cultural values may drive the observed care pattern of palliative care underutilization. Our goal is, therefore, to explore attitudes about serious illness and palliative care and to elucidate culturally salient aspects in existing gaps in awareness of and access to palliative care resources among a Chinese-heritage population.
Methods
Study design and ethical approval
This qualitative study employed semistructured interviews to explore perspectives on serious illness and palliative care among Chinese-heritage patients and caregivers who are currently living in the United States. The study was approved by the Stanford University Institutional Review Board (IRB #68909). To protect participant confidentiality, the requirement for written informed consent was waived. Verbal informed consent was obtained prior to each interview. We present this article in accordance with the Consolidated Criteria for Reporting Qualitative Research (COREQ) reporting checklist (Supplementary Table S1).
Participant recruitment
Participants were recruited using stratified purposive sampling to ensure variation across key characteristics, including participant role (patient or caregiver) and self-reported cultural identity (Chinese or Chinese American). Eligibility criteria included the following: (1) self-identification as Chinese or Chinese American, (2) age 18 years or older, (3) either living with a serious illness or serving as the primary caregiver for someone with a serious illness, and (4) fluency in English or Mandarin Chinese. In our study, people of Chinese heritage are those who are either born in China, Taiwan, or other Asian countries with Chinese diaspora or American-born descendants of those from a Chinese background. Serious illness was defined as a life-limiting or chronic condition such as cancer, advanced heart or lung disease, cirrhosis, or other forms of sustained functional impairment.
Participants were identified through two primary sources. First, clinicians affiliated with Stanford Health provided direct referrals. Second, community outreach was conducted through two local nonprofit organizations serving the Chinese American community: The Chinese American Coalition for Compassionate Care (CACCC) and the New Hope Chinese Cancer Care Foundation (NHCCCF). Recruitment flyers were disseminated through CACCC and NHCCCF electronic newsletters. Individuals who expressed interest were contacted by email or up to three times by phone. There was no predetermined target number, and participants were recruited until thematic saturation could be achieved.
Semistructured interviews
Interviews were conducted remotely via Zoom by one male and one female researcher (K.L. and A.F.), each with bachelor’s degrees and trained in qualitative research methods and in conducting semistructured interviews. The interviews lasted approximately 30–40 minutes. Each session began with a verbal explanation of the study purpose and procedures, followed by confirmation of verbal consent. All interviews were audio and video recorded and subsequently transcribed verbatim. Transcripts were stored on a secure, access-restricted server. No follow-up interviews were conducted. No transcripts were given to participants for review.
Participants selected their preferred interview language, English, or Mandarin Chinese. Mandarin interviews were translated into English by a fluent researcher (A.F. and J.W.), with cross-validation by the second fluent speaker to ensure accuracy.
The interview guide consisted of open-ended questions designed to elicit experiences related to serious illness, cultural identity, decision-making preferences, perceived barriers to care, comfort discussing end-of-life issues, and attitudes toward palliative care (Supplementary Table S2). Andersen’s behavioral model of health services use, an access-to-care framework, informed study design, given our research aims of identifying gaps in awareness, access, and use of palliative care noted among patients and caregivers of Chinese descent. 15 Participants were encouraged to reflect on how cultural and personal values shaped their engagement with the health care system and their approach to navigating serious illness. Interviewers described palliative care as broadly applicable to anyone living with serious illness, with the primary goal of improving the quality of life for both patients and caregivers and not limited to solely end-of-life or hospice care. 16 We piloted the interview guide with two individuals.
Data analysis
The evaluative team consisted of one neurosurgeon (A.W.), one palliative care specialist (K.L.), a qualitative methods expert (K.G.), and three analysts (S.W., K.L., J.W.). Coding was conducted using ATLAS.ti v25 (GMBH, Berlin) Web software. We summarized interviews on the day of completion with structured templates. 17 An initial codebook was iteratively developed using four transcripts (Chinese- and English-speaking patients and caregivers) selected to reflect variation across participant roles and cultural backgrounds. These transcripts were independently dual coded with an inductive approach by two researchers (K.L. and S.W.). Discrepancies were resolved through discussion, establishing inter-rater reliability.
The remaining transcripts were coded by K.L., S.W., A.W., and J.W. To ensure consistency across coders, A.W. and J.W. dual-coded one transcript alongside K.L. or S.W. The evolving codebook was reviewed and revised iteratively by the study team. New codes were added as needed to accommodate emerging insights, and definitions were assigned to each code to maintain internal consistency.
A model of the final coding frame was constructed to organize major themes, which emerged from coded data through iterative review by the evaluative team until meaning saturation was deemed to be reached. 18 Representative quotes were selected to illustrate each thematic finding. All analytic decisions were reviewed during regular team meetings to ensure shared interpretive consensus.
Results
We conducted semistructured interviews with 27 participants, including 13 patients and 14 caregivers (Table 1). The mean participant age was 56.2 ± 12.2 years (range: 32–75 years); patients were older on average than caregivers (58.8 vs. 53.8 years). Most participants were women (81.5%), with higher female representation among caregivers (92.9%) than patients (69.2%). Interviews were conducted in English (n = 17) or Mandarin Chinese (n = 10). Nine participants considered themselves second-generation Chinese American, and the remaining 18 participants were born in Asia and moved to America later in life. We did not collect information about specific regions or towns from where participants hailed other than what was self-reported during the interview’s course. A range of serious illnesses was represented among the cohort of patients or caregivers, including advanced cancer (n = 23), end-stage renal disease (n = 1), liver disease (n = 1), Parkinson’s disease (n = 1), and dementia (n = 1). Among cancers, the most commonly represented were breast (n = 6), lung (n = 4), and hepatobiliary (n = 3) cancers. The majority of interviewees did not fully understand the scope of palliative care services and resources when queried until the interviewer described and explained palliative care. Two people approached for the study ultimately decided not to participate, citing scheduling reasons.
Sociodemographic Characteristics of Interview Participants, Stratified by Role
Thematic analyses elicited four overarching themes pertaining to perceptions on serious illness and palliative care held by patients and families of Chinese heritage. Additional illustrative excerpts are included in Table 2.
Additional Illustrative Excerpts from Interview Transcripts
Theme 1: Culturally based factors influence Chinese-heritage patients’ and families’ understanding of serious illness and palliative care, including language preference, acculturation, and values regarding family dynamics
Cultural values underpin the contexts within which Chinese patients and caregivers coped with serious illness and various aspects of palliative care. Commonly cited by interviewees, filial piety, or “xiao,” was a deep-seated cultural belief that values respecting and giving back to parents and elders. Often, filial piety manifested in the aversion to causing despair and hopelessness [“I never use the word “cancer.” I just use the word “tumor.”” (Interview 22, caregiver)] and in medical decisions and preferences [“Those children…decided to bring their parents to the nursing home. They are bad children [because] they are not “Houseun,” meaning that they are not caring and supportive.” (Interview 13, caregiver)].
Primarily Chinese-speaking adults faced language barriers that posed challenges in navigating the health care system: “Not all Chinese can speak English so well…especially medical terms. That’s a killer. …We need to actually spell the words and research…that takes time, too” (Interview 26, patient).
Caregivers and family members also struggled with explaining palliative care’s role and complex end-of-life treatment decisions without certified medical interpreters: “I don’t want to come from my mouth to tell my mom, “This is hospice care.” …We need…the professional third party to help.” (Interview 13, caregiver).
Acculturation to Westernized views of end-of-life also affected Chinese-heritage interviewees’ perceptions of serious illness, specifically advance care planning. A patient with a self-described higher degree of acculturation reported, “I was educated in a very Western style…[and] experienced a significant influence of Western cultural thinking. My friends…were preparing for things very early on as well.” (Interview 8, patient).
Theme 2: Chinese-heritage patients and families express challenges in addressing psychological and emotional stresses associated with serious illness
Serious illness can present numerous psychological and emotional stresses, from the shock at receiving news about diagnoses or prognoses to concerns about treatment options and finances. Many of our participants reported disbelief when grappling with diagnoses of serious illnesses after seeking care for falls, fever, or regular screening. Chinese-heritage families described the serious illness experience as “mentally…a roller coaster” (Interview 13, caregiver). This particular participant cited the psychological distress of experiencing multiple setbacks during the patient’s illness course. Another described their “spiritual struggle” (Interview 22, caregiver), specifically referring to guilt and fear concerning their faith in God as a result of challenges in navigating mounting patient needs.
Due to culture norms of preserving harmony and avoiding over-burdening others, Chinese-heritage patients and caregivers tend to silence negative emotions. Mental health issues are overall difficult to acknowledge, and, due to culturally based stigma surrounding mental health challenges, some found it challenging to engage with mental health resources. An interviewee reported generational differences and misconceptions in handling psychological stress: “A lot…are severely depressed. The parents…feel that…[it’s a] result of weakness of their children [who] didn’t work hard enough.” (Interview 8, patient).
Theme 3: Chinese-heritage people attempt diverse coping strategies, including faith, spirituality, and self-care rooted in traditional Chinese medicine practices
Chinese-heritage interviewees manage their distress through various spiritual and religious practices, such as “pray[ing] together…we give each other encouragement…, reminding each other that God is present to help us” (Interview 22, caregiver). Patients described beliefs in both Christianity [“I ask Jesus to hold my hand.” (Interview 27, patient)] as well as Buddhism [“I have that kind of faith…it’s a release and…I don’t have any regrets like, what else [do] I need to do on this earth?” (Interview 26, patient).
Many also reported coping strategies of focusing on work and the present, physical exercise, and self-care with alternative healing practices.
Theme 4: Existing social support structures are strongly relied upon within the Chinese community
Chinese-heritage patients and caregivers emphasized kinship, family relationships, and other important social structures for support during serious illness. One patient expressed, “The doctors provided physiological treatment, but friends, family, and church provided psychological support.” (Interview 16, patient).
Strong support systems within families provided nformation exchange, moral and spiritual encouragement, and help with navigating a complex health system: “My…two daughters call[ed] everywhere to look for opportunities. And then we talked to a surgeon down south.” (Interview 2, patient).
Discussion
We determined four themes regarding values and beliefs derived from Chinese culture about serious illness and the limited awareness of palliative care among Chinese-heritage individuals facing serious illness. Our study’s findings identified multiple cultural undertones of the serious illness experience from the Chinese perspective, which can guide clinicians’ role in improving the serious illness experience for this patient and caregiver population.
Aspects unique to Chinese culture involve fundamental values of filial piety and collective well-being, derived from tenets of Confucian philosophy. These values surfaced in several interviews, where the involved role of family members throughout the illness course was a recurrent concept. Medical care preferences when patients are diagnosed with serious illness are both a personal and family decision. The emphasis on the collective as a core Chinese value may further present as a barrier to access of palliative care services by Chinese immigrants in non-Asian countries, including the United States and Canada. 19
While patient autonomy is an ethical principle upheld in medicine practiced in the United States and clinicians often provide full information about diagnosis and prognosis directly to the patient, families and patients from other cultures, such as in East Asian, Middle Eastern, and Hispanic communities, prefer and may opt for nondisclosure of “information [that] will cause [the patient] to give up.”13,20–22 For example, Chinese-heritage families protect older parents from being exposed to talking about death and dying out of fear of causing hopelessness and despair, appearing disrespectful, or undermining parental authority. 23 It also appears that Chinese-heritage people regard discussions concerning end-of-life care and the dying process as taboo, in general. 24 Overall, these preferences for information nondisclosure and related behaviors among Chinese families may stem from motivations to protect loved ones’ psyches. Even so, clinical providers should still be aware that Chinese-heritage patients may hold individual beliefs and a range of preferences about their health care. 25
Acculturation is the process by which an individual assumes social, psychological, or other aspects of a society’s dominant culture. 26 A higher level of acculturation can be characterized by adopting new customs, learning the dominant language, and overall integrating into the new culture. This phenomenon was directly referenced by some interviewees in our cohort. Prior studies have determined that acculturation level correlated with knowledge level as well as engagement or acceptance of advance care planning. In an underserved New York City community of older non-English-speaking Chinese adults, many demonstrated low acculturation, with only 15.1% of surveyed participants having completed advance directives. 10 There may also be a component of intergenerational differences that influence degree of acculturation, in addition to the cultural contexts within which adult immigrants and immigrant children primarily reside, such that children typically more readily adopt new languages and cultural values. 27
Aspects such as collective, patient-centered, and family-oriented Chinese values are in line with palliative care’s holistic approach to support physical, psychological, emotional, and spiritual well-being throughout the serious illness course. Aligning with patients’ and family’s values increases clinicians’ rapport and improves the effectiveness of patient–provider communication, especially while navigating deeply entrenched cultural beliefs, such as the importance placed on nutrition and the use of euphemisms for death.25,28 Furthermore, Chinese-heritage people may derive varied benefits to emotional and psychological well-being from different sources of social support, including from spouses and children versus friends.29,30
As for the role of clinicians, palliative care specialists can play a significant role in communicating and partnering with Chinese patients and families. There are useful opportunities for palliative care physicians to integrate effectively within existing social and community structures, such as extended family, important in Chinese culture. Even among Chinese-heritage patients with low reported acculturation, participants regarded palliative care as helpful in brokering potentially competing priorities between patients and the health care system and as beneficial in sequentially understanding the scope of serious illness prognoses. 31 However, patients with a Chinese background also preferred palliative care providers to demonstrate cultural sensitivity, expertise in symptom management, and accommodation of family perspectives in medical decision-making. 32 Furthermore, some ethnically Chinese patients do prefer their physicians to navigate end-of-life decisions in order to mitigate conflict and decision-making burden on family. 33
Several participants in our study also explicitly expressed curiosity about palliative and supportive care and appreciated explanations about existing resources and services from our research team. Communication about these topics is historically best performed in a sensitive and practical manner, enlisting the aid of medical interpreters as cultural brokers. 25
Aspects of traditional Chinese medicine (TCM) and palliative care as practiced in America can both benefit Chinese-heritage people with shared goals of assuring and improving quality of life. TCM, including herbal supplemental medicines and mind-body practices like tai chi or qigong, is used to alleviate cancer pain and reduce reliance on opioid medications in integrative palliative care within China. 34 TCM has also been reportedly used by patients suffering from other serious illnesses, such as Parkinson’s disease, chronic liver disease, and advanced heart disease. 34 One elderly patient, aged 104, with a diagnosis of primary hepatocellular carcinoma opted to receive palliative care and TCM with familial agreement; by the 27-month postdiagnosis follow-up appointment, the patient continued to experience overall good quality of life. 35
Limitations
We interviewed patients and caregivers of Chinese heritage through purposive sampling.
Trustworthiness in qualitative research involves multiple aspects, including credibility, transferability, dependability, and confirmability. While our team did not engage in certain practices, such as member checking or reflexivity, our team was involved in peer debriefing and investigator triangulation as well as methods documentation and auditing.36–38
Collecting viewpoints of health care and palliative care use directly from Chinese-heritage people was an integral aspect of our study. While it is challenging to precisely infer cultural identity from native language, proficiency in preferred language, and degree of acculturation, these aspects are nevertheless informative. As such, we interviewed Chinese-heritage participants who have diversity in cultural identification by self-report as well as preferred language, country of origin, and generational status. 39
Andersen’s model of health care utilization influenced our study’s design, since we recognize that patients’ demographic characteristics and individual health beliefs impact their use of health services, such as palliative care. 15 Even so, this general framework may have some limitations as applied to our study, which ultimately hones in on unique cultural values and culturally based health beliefs.
Conclusion
Seriously ill Chinese-heritage patients and caregivers are not commonly aware of the breadth, scope, and purpose of palliative care resources. Our qualitative study of perspectives on the serious illness experience and palliative care revealed Chinese cultural values and beliefs underpinning health service use and palliative care acceptance. Culturally attuned approaches to improve awareness and utilization of palliative care services will be needed for Chinese-heritage patients and caregivers facing serious illness. Various opportunities include addressing deep-seated cultural values, improving emotional well-being, and developing existing social and self-care systems within the Chinese community.
Authors’ Contributions
Conceptualization and methodology: A.W., K.G., and K.L. Analysis: A.W., S.W., K.L., A.F., J.W., K.G., and K.L.. The original draft of the article was written by A.W., and all authors commented on subsequent versions of the article. All authors read and approved the final article.
Ethics Approval
The study was conducted with approval of the Stanford IRB (IRB #68909) and in accordance with the Declaration of Helsinki.
Availability of Data and Materials
The data that support the findings of this study are not publicly available but can be available on reasonable request from the corresponding author, A.W.
Supplemental Material
sj-pdf-1-pmr-10.1177_26892820261464814 — Supplemental material for Perspectives on Palliative Care and the Serious Illness Experience from Chinese-Heritage Patients and Caregivers
Supplemental material, sj-pdf-1-pmr-10.1177_26892820261464814 for Perspectives on Palliative Care and the Serious Illness Experience from Chinese-Heritage Patients and Caregivers by Adela Wu, Shaowei Wan, Kendall Lin, Aurora Feng, Janet Wu, Karleen Giannitrapani, and Karl Lorenz
Supplemental Material
sj-docx-2-pmr-10.1177_26892820261464814 — Supplemental material for Perspectives on Palliative Care and the Serious Illness Experience from Chinese-Heritage Patients and Caregivers
Supplemental material, sj-docx-2-pmr-10.1177_26892820261464814 for Perspectives on Palliative Care and the Serious Illness Experience from Chinese-Heritage Patients and Caregivers by Adela Wu, Shaowei Wan, Kendall Lin, Aurora Feng, Janet Wu, Karleen Giannitrapani, and Karl Lorenz
Footnotes
Author Disclosure Statement
The authors of this study have no conflicts of interest to report.
Funding Information
A.W. is supported by a seed grant from the Stanford Center for Asian Health Research and Education.
Abbreviations Used
References
Supplementary Material
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