A comparative study of end-of-life care preferences among Chinese populations in China and the United States conducted by Yifan Lou (Columbia University, 2019, 2022) reveals shared cultural values influencing end-of-life care decisions, despite differing societal contexts and healthcare systems.
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Death and dying are profound issues that are shaped by cultural, societal, and policy factors. People often assume that the experiences of dying, death outcomes, and end-of-life care decisions—such as opting for hospice care and forgoing treatments—are largely determined by the societal structures and policy frameworks of where individuals live. However, death and dying rituals are deeply cultural, and individuals within the same ethnic groups may share fundamental beliefs and values, even when they are in different environments.[1] The shared cultural perspectives, moreover, can lead to comparable end-of-life care choices and,[2] consequently, similar dying experiences, regardless of societal or policy differences.
I studied Chinese older adults as an entry point to understand how different social contexts and life experiences impact preferences for a “good death” and end-of-life outcomes for individuals with shared cultural roots.
There are approximately 1.5 billion people of Chinese ethnicity living around the world, with about 12% of them aged 65 and older.[3] Ensuring a “good death” for this rapidly growing demographic is becoming an increasingly critical public health priority. However, a key question remains: do Chinese people living in different parts of the world—in Western and Eastern countries—share similar perceptions, wishes, and choices regarding end-of-life care, decision-making, caregiving, and family communication?
I was privileged to receive a Sylff Research Grant (SRG) that enabled me to explore this topic through a comparative project. I examined the end-of-life care experiences of Chinese individuals in China and the United States—two countries with distinct cultural, social, and healthcare contexts. By investigating these populations, I hoped to shed light on how cultural values, social circumstances, and life experiences (such as immigration versus remaining in the home country) influence older adults’ death and dying experiences. The findings can be critical for policymakers seeking to develop healthcare and palliative care strategies that respect the diverse values, traditions, and preferences of older adults, ensuring their end-of-life experiences align with their cultural beliefs and desires.
With the SRG award, I was able to conduct a series of mixed-method studies examining end-of-life care experiences among Chinese populations in China and the United States. These studies included one qualitative and one quantitative study focused on Chinese individuals in China, as well as a quantitative study of Chinese older adults in the United States. This research yielded findings with which I was able to make two conference presentations with manuscripts in preparation at the Gerontological Society of America’s Annual Scientific Meeting in November 2024 and to draft another manuscript currently under review.
Decisional Conflicts among Family Members
In the first study, I built relationships with community-based healthcare agencies in Shanghai and Beijing providing hospice and palliative care to older adults. I conducted fieldwork alongside these agencies, collecting and analyzing qualitative data on the experiences and perceptions of end-of-life care among older adults, caregivers, and healthcare providers. The study focused on how societal-level factors influence these end-of-life care experiences. Using a multi-level ecological perspective, I sought to shed light on the specific challenges and stressors that family caregivers face when navigating end-of-life care, particularly for individuals living with cognitive impairment.
A hybrid grounded theory approach was used to guide the analysis. Five key themes emerged from the data pointing to multi-level challenges and stressors, framed by social ecological theory. At the individual and interpersonal levels, emotional exhaustion due to decision-making was a prominent theme, especially when caregivers faced communication barriers regarding necessary decision-making paperwork during frequent emergency room visits. Caregivers of individuals with dementia also encountered unique decisional conflicts, often involving disagreements among siblings and uncertainty about the validity of the expressed wishes of those in advanced stages of dementia.
At the mezzo level, a common theme centered around the stigma associated with hospice care for dementia patients, in contrast to the more widely accepted notion of such care for individuals with cancer. Specialized care for dementia symptoms is often viewed as unnecessary or as overtreatment, and the sending of older parents with dementia to hospital-based hospice care—since home-based hospice care is rarely available in China—is considered a violation of filial piety. This stigma often prevents caregivers from seeking appropriate services and support for their dying loved ones. On the macro level, the lack of disease-specific end-of-life resources emerged as a significant challenge. This gap in resources often results in long waiting lists and rising service costs, making it difficult for caregivers to find care that aligns with the specific needs of older adults with different conditions (such as dementia, cancer, and heart failure).
Pain Management in End-of-Life Care
The lack of palliative care and effective pain management is a recurring theme in qualitative studies, and this prompted me to question whether this is a widespread issue for older adults across China. However, generalizing these findings requires nationally representative data. Fortunately, during my fieldwork in Beijing, I connected with a team of interdisciplinary researchers who share similar interests and conducted the first national longitudinal survey of end-of-life care among Chinese older adults.
Through this collaboration, I was able to complete my second study, in which we examined the prevalence of pain and its association with place of death and pain management in the context of urban-rural differences, using data from the China Longitudinal Aging Social Survey. Our sample included 958 decedents aged 60 and above, and we employed logistic regression models for analysis.
Our findings revealed that 26.4% of decedents did not receive timely and effective pain treatment, and 66.5% of families were unable to manage the decedent’s pain. Additionally, 41.96% of decedents experienced severe pain symptoms. Rural residents, those with severe pain, and those who died at home were more likely to forgo adequate pain treatment compared to their urban counterparts. Urban-rural differences emerged where rural older adults with severe pain and those who died at home were less likely to receive timely and effective pain treatment than urban older adults. In urban areas, severe pain symptoms and place of death were significantly associated with receiving appropriate pain management, but this was not the case in rural areas.
This quantitative study supports and extends the qualitative findings, highlighting the urgent need to improve pain management and address disparities in end-of-life care, particularly in rural China.
As noted in the previous qualitative study, many older adults in China do not communicate their wishes for future care to their family members. As a result, family members often face the stressful task of making end-of-life decisions without knowing their loved ones’ preferences and are left uncertain whether any wishes expressed earlier are still valid—particularly if illness has progressed to the point of cognitive impairment.
This raises the question: Are similar gaps in end-of-life care planning present among older, ethnic Chinese adults in the United States, despite the availability of various social policies (such as Medicare benefits for end-of-life care planning) and advocacy programs?
US Trends Mirror Those Seen in China
To address this, I attended networking workshops at gerontology conferences and got connected with a group of researchers who conducted the first population-based study on Chinese immigrants in the United States and have been collecting end-of-life, care-related data since 2021. By working with them, I was able to access this data and start my third study.
We referred to the Population Study of Chinese Elderly in Chicago (also called the PINE Study) to investigate the prevalence and preferences of end-of-life care planning, along with associated sociodemographic and health determinants among older Chinese Americans.
Linear and logistic regressions were conducted to analyze the data. Our findings showed that 46.1% of participants considered end-of-life care planning to be important or somewhat important, yet only 22% had discussed their end-of-life preferences with family members. The most preferred locations for end-of-life care were home (43.7%), hospital (35.5%), and nursing home (10.1%), with only 4.3% preferring hospice care. In terms of decision-making, 47.1% viewed end-of-life care as a family decision, 39.6% saw it as a personal decision, and 7.5% and 3.3% preferred their children or spouses to make decisions on their behalf, respectively.
Our analysis also revealed several factors associated with greater engagement in end-of-life planning, namely, older age, female gender, higher education, greater acculturation, higher levels of religiosity, and more chronic health conditions. These factors were similarly linked to a greater likelihood of having end-of-life care discussions with family members.
Our findings highlighted a low level of engagement in end-of-life care planning among Chinese older adults in the United States, mirroring trends observed in China, despite the availability of more resources and advocacy programs in the United States. This underscores the need for culturally appropriate interventions that respect the diverse preferences for end-of-life care among Chinese older adults in both countries to improve preparedness and decision-making at the end of life.
Next Phase of Research
These SRG-funded pilot studies have laid the groundwork for my next phase of research, which will involve a larger-scale comparative analysis of end-of-life care preferences among Chinese populations in Western and Eastern countries. I am currently compiling the data and developing a plan to conduct a formal statistical population comparison study. This line of research holds significant societal implications for populations worldwide that share similar cultural values and migration histories.
Additionally, these studies underscore the shared cultural foundations among Chinese communities across different social contexts in relation to preferences for end-of-life care and decision-making, despite the unique challenges and needs that arise in each country. This suggests that interventions that have proven effective among Chinese populations in the United States can also be adapted for use in China and raises the possibility of implementing cost-effective interventions across different settings.
This SRG-funded work has broad research implications, as it paves the way for further comparative studies among other ethnic groups to explore whether cultural preferences remain consistent when individuals migrate to or reside in different countries. If such patterns hold true, it could lead to more efficient and scalable interventions tailored to diverse cultural contexts, ultimately improving end-of-life care for various ethnic communities worldwide.
Notes
[1] Megumi Inoue, “The Influence of Sociodemographic and Psychosocial Factors on Advance Care Planning,” Journal of Gerontological Social Work 59, no. 5 (2016): 401–22.
[2] Yifan Lou and Jinyu Liu, “Death Narrative in 19th-Century China: How Did Newspapers Frame Death and Dying,” Omega: Journal of Death and Dying 84, no. 2 (2021): 634–52.
[3] Dudley L Poston Jr and Juyin Helen Wong, “The Chinese Diaspora: The Current Distribution of the Overseas Chinese Population, Chinese Journal of Society 2, no. 3 (2016): 348–73.