Caring for Asian American and Pacific Islander Patients with Serious Illness

Understanding the Asian American and Pacific Islander (AAPI) Community

Effective palliative care for AAPI individuals with serious illness begins with an understanding of the community’s cultural, linguistic, and historical diversity, along with the unique factors that shape health care experiences. Recognizing these differences helps clinicians provide care that is respectful, responsive, and aligned with each patient’s values.

According to the U.S. Census Bureau, Asian American and Pacific Islander (AAPI) communities make up 6.2% of the U.S. population, with over 20.6 million people identifying as Asian, Native Hawaiian, or Other Pacific Islander alone, according to the 2020 Census.

This umbrella term includes more than 21 distinct ethnic groups, such as Chinese, Filipino, Indian, Vietnamese, Hmong, Native Hawaiian, Samoan, and Chamorro. The diversity within AAPI communities extends across language, immigration history, citizenship status, and geographic location.

To reflect this linguistic diversity, the 2020 Census disseminated materials in 59 non-English languages, including 23 languages originating in Asia, such as Tagalog, Mandarin, Hmong, Urdu, and Korean.

AAPI communities are concentrated in states like Hawaii, California, and New Jersey, but are increasingly present in metro areas across the country. Despite this, health systems and public health data often treat AAPI populations as monolithic—masking critical differences in needs and outcomes.

A History That Shapes Trust and Care

The health care experiences of many AAPI patients are deeply shaped by a long legacy of exclusion and discrimination in the U.S. Early immigrants from countries such as China and the Philippines were often met with hostility, racial violence, and legal restrictions—including the Page Act of 1875, the Chinese Exclusion Act of 1882, and the internment of Japanese Americans during WWII.

These events continue to influence perceptions of government systems and medicine. More recently, hate incidents targeting AAPI individuals surged during the COVID-19 pandemic. In 2023 alone, nearly half of AAPI adults reported experiencing a hate incident.

Persistent Health Disparities and Data Invisibility

The model minority myth holds that Asian Americans are successful and healthy as compared with other minority or immigrant communities in the US - and in health care, this myth means that health disparities for AAPI patients may go unidentified or unaddressed. The 1985 Heckler Report on ‘minority health’ even concluded that Asian Americans were the “healthiest” group in the U.S.—a claim made without accounting for subgroup variation or data disaggregation.

In reality, AAPI individuals face several critical disparities:

  • Cancer is the leading cause of death among Asian Americans, with elevated rates of liver, stomach, and breast cancer. While Asian Americans generally have lower overall cancer rates, significant disparities persist in specific cancer types.

  • For example, from 2018–2022, Asian/Pacific Islanders had liver and intrahepatic bile duct cancer rates 19% higher than the total population.

  • From 2019–2023, stomach cancer death rates were 49% higher in Asian/Pacific Islander males compared to all males.

  • Finally, Asian/Pacific Islander females died from liver/IBD and stomach cancer at rates 21% and 65% higher, respectively, than females in the total population.

  • Hepatitis B is significantly more prevalent among certain Asian American subgroups, but often undiagnosed.

  • Diabetes risk begins at a lower BMI than in other populations, leading to missed screenings under standard criteria.

  • Mental health and dementia are often stigmatized, viewed as personal weakness or family shame, resulting in lower service utilization.

Cultural Considerations in Serious Illness

AAPI patients may approach illness and death with perspectives shaped by family-centered values, spiritual beliefs, and cultural norms that differ from Western medical paradigms.

  • Avoidance of burdening family may lead to delayed care or treatment refusal.

  • End-of-life conversations are often taboo, and families may prefer indirect or non-disclosive approaches.

  • Pain and suffering may be seen as a normal part of aging and not worth reporting.

  • Language and dialect barriers can prevent effective communication and care planning.

  • Concepts of balance (e.g., "Qi" fundamental concept in Traditional Chinese Medicine (TCM)) may influence treatment preferences and perceptions of illness.

In one case, a woman hospitalized after surgery was reported as refusing oral fluid hydration, placing her at risk for dehydration, kidney injury, and prolonged hospital course. The medical teams wondered whether she was confused, or not understanding the recommendations to hydrate. When the geriatric team met with her, it was uncovered that in the summertime the nursing staff had filled her pitcher with iced/cold water, and she had politely refused the cold fluids due to her cultural beliefs that the cold would jeopardize her post-surgical “deficient Qi” state, and worsen her health. Her condition improved once she received warm water and support from a Cantonese interpreter.

Recommendations for Providing Inclusive, High-Quality Care

The strategies below are grouped by level of influence: individual clinicians, health care systems, and the field at large.

  • Avoid assumptions based on the “model minority” myth; ask open-ended questions about beliefs, values, and goals of care.
  • Use professional interpreters, and confirm language and dialect preferences rather than relying on family members or basic language knowledge.
  • Recognize and respect family-centered decision-making structures, including the desire to shield loved ones from bad news.
  • Normalize palliative care early, especially during primary care or chronic illness discussions.
  • Take time to understand culturally driven health beliefs that might affect treatment decisions (e.g., hot/cold balance, energy loss, herbal remedies).
  • Disaggregate data in palliative care dashboards to identify disparities by ethnic subgroup rather than treating AAPI individuals as a single category.
  • Ensure access to interpreter services that are accessible, accurate, and available 24/7, including options for multiple dialects and modalities (e.g., phone, video).
  • Encourage completion of culturally responsive/humility training that includes distinct AAPI communities.
  • Implement standardized protocols for family engagement, to reduce potential provider biases - particularly in advance care planning and serious illness conversations.
  • Build clinical partnerships with community-based organizations, such as local cultural associations or faith groups, to support outreach, trust-building and a deepened understanding of the community you serve.
  • Fund and prioritize AAPI-focused research, particularly on serious illness, caregiving, and access to palliative care.
  • Support national and regional coalitions advocating for disaggregated health data and better inclusion of AAPI voices in health policy.
  • Collaborate with professional organizations (e.g., AAHPM, APHC) and local organizations in your area to develop best practices tailored to specific AAPI subpopulations.
  • Develop community-informed public education campaigns to dispel stigma around palliative care, hospice, dementia, and mental illness.
  • Advocate for federal protections and funding to address anti-Asian hate and its impact on health and care-seeking behaviors.

Content Contributors/Acknowledgements:

Brynn Bowman, MPA
Chief Executive Officer, CAPC

Brittany Chambers, MPH, CHES
Director of Health Equity, CAPC

Stephanie Chow, MD, MPH
Associate Professor, Brookdale Department of Geriatrics and Palliative Medicine

Rayna Ross, CHES
Health Equity Program Manager, CAPC

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