Unseen and Underserved: Why the Needs of Many AAPI Patients with Serious Illness Remain Invisible

When conversations about gaps in health care arise, Asian American, Native Hawaiian, and Pacific Islander (AAPI) communities are often absent from the discussion. This absence is not because disparities do not exist for these communities. Rather, it reflects one of the greatest challenges facing AAPI communities today: Invisibility.

The "model minority" myth has long portrayed Asian Americans as uniformly healthy, highly educated, financially secure, and largely unaffected by the structural barriers experienced by other racial and ethnic groups. While seemingly complimentary, this narrative has obscured tremendous diversity within AAPI communities, masked significant health disparities, and contributed to chronic underinvestment in research, public health programming, and culturally responsive care.

For clinicians caring for people with serious illness, these assumptions have real consequences. Palliative care is rooted in understanding each person's goals, values, and lived experiences. When entire communities are viewed as culturally or socially homogeneous, care is less likely to be truly person-centered.

The term "AAPI" encompasses more than fifty ethnic groups and hundreds of languages and dialects, representing communities with vastly different immigration histories, cultural traditions, socioeconomic circumstances, and health outcomes. Yet in health records, research, and even in conversations about health equity, these communities are frequently grouped together into a single racial category. When data are aggregated this way, important differences disappear.

For example, Indian Americans are among the highest-income racial groups in the United States, while Burmese Americans experience some of the highest poverty rates. Aggregated data can average these vastly different experiences together, creating the false impression that all AAPI communities are thriving. The result is fewer targeted public health interventions and fewer community resources.

This invisibility extends beyond data collection. Despite Asian Americans, Native Hawaiians, and Pacific Islanders (AAPI) making up roughly 6 to 8 percent of the U.S. population, AAPI-focused clinical research receives only about 0.17% to 0.2% of the National Institutes of Health's total health research budget. Limited research creates limited evidence, and this influences funding priorities, clinical guidelines, and quality improvement initiatives. Ultimately, AAPI patients living with serious illness feel the consequences.

The model minority myth also influences how clinicians perceive individual patients. Health literacy, for example, is often assumed rather than assessed for some AAPI patients. They may be perceived to be highly educated, medically knowledgeable, or proficient in English based solely on their race or ethnicity. In reality, health literacy varies tremendously across AAPI communities, just as it does within every population. Assuming otherwise can leave patients with unanswered questions, misunderstandings about treatment, and unmet needs.

Even clinical guidelines do not always reflect the diversity of AAPI populations. Only recently, emerging evidence has prompted several medical organizations to revise obesity definitions for Asian populations because many develop diabetes and cardiovascular disease at lower body mass indices than White populations. More education is needed to ensure that clinicians are aware of and incorporate updated guidelines into their clinical practice.

Serious illness introduces another layer of complexity. AAPI communities experience unique patterns of chronic disease and health disparities:

For many AAPI patients, invisibility doesn't begin with a missed diagnosis. It begins with a conversation.

Discussions about prognosis, symptom management, and treatment decisions depend on patients and families fully understanding their options. Yet even in health systems with interpreter services, meaningful communication is not guaranteed.

Dr. Steven Chao has witnessed this firsthand while caring for patients in Queens, one of the most culturally and linguistically diverse communities in the country. Interpreter services are often available, but they may default to the most common language rather than the patient's preferred dialect. A patient who speaks Fuzhounese or Toisanese, for example, may be connected with a Mandarin interpreter because it is the only option readily available.

Patients may leave important conversations about medications, treatment options, or goals of care piecing together only part of what was said. Cultural norms compound this: rather than risk questioning a medical expert or appearing confrontational, many patients may hesitate to say they do not understand, nodding politely and thanking the care team, while leaving without the information needed to make fully informed decisions.

For palliative care clinicians, these seemingly small gaps in communication can have enormous consequences. Palliative care relies on understanding not only what treatment is being offered, but why, and whether it aligns with what matters most to the patient.

Language barriers, however, are only one way invisibility manifests. For many second-generation Asian Americans, the barrier is not the English language. It is losing the language and culture that once connected them to their families.

Consider the following example from my (Stephanie Chow’s) personal experience. Despite becoming fluent in Spanish through school and clinical practice, I never had the same opportunity to become fluent in my family's Chinese dialect. Like many immigrant families, mine experienced generations shaped by discrimination and anti-Asian sentiment that encouraged assimilation as a means of safety and acceptance. Heritage languages, traditions, and histories were often intentionally left behind so children could more easily "fit in”.

Unlike Spanish, which connects communities across multiple countries and is widely spoken throughout the United States, Asian languages are extraordinarily diverse. Chinese American communities may speak Mandarin, Cantonese, Fuzhounese, Toisanese, Hokkien, and dozens of other dialects. Opportunities for second-generation children to become fluent in their family's language are often limited, leaving many feeling disconnected from an important part of their identity.

That disconnect can become especially apparent during serious illness, when adult children suddenly find themselves navigating complex medical decisions with aging parents who communicate, understand illness, and make decisions through a different cultural lens.

Cultural beliefs surrounding illness can also shape how patients seek care and communicate distress. During a study abroad experience in Beijing, I observed that everything from fatigue and muscle aches to grief after the loss of a loved one was often described as a disruption in qi, or life energy, and treated accordingly. Depression or anxiety were rarely named directly. This illustrates an important reminder for clinicians: psychological distress is not experienced or expressed the same way across cultures. Without thoughtful assessment, symptoms of depression, anxiety, or caregiver burden may go unrecognized.

These experiences reinforce a simple but essential lesson: culturally responsive care is not about memorizing customs or making assumptions. It begins with curiosity. Asking patients how they prefer to communicate, who they want involved in decision-making, and what cultural or spiritual beliefs shape their understanding of illness can reveal barriers that might otherwise remain invisible.

Culture influences more than communication. It shapes how people understand illness, who they trust to make medical decisions, and what they hope for throughout the course of serious illness. These beliefs are not universal across AAPI communities, but they underscore why person-centered care requires moving beyond assumptions.

For Dr. Noelle Marie Javier, a palliative care physician and member of the Filipino community, caring for patients means recognizing the many identities people bring into the clinical setting. Race and ethnicity intersect with immigration history, language, faith, sexual orientation, gender identity, and family structure, all of which influence how patients experience illness and the health care system.

Among many Filipino families, serious illness is understood as a family experience rather than an individual one. Loved ones frequently participate in medical decision-making, and patients may prefer that clinicians provide clear recommendations instead of presenting multiple options without guidance. Deeply held Catholic beliefs can also shape conversations about suffering, hope, and end-of-life care. For some families, discussing death or advance care planning may feel like inviting misfortune, while hospice may be viewed as a service reserved only for the final days of life rather than part of a broader continuum of supportive care.

Patients with limited English proficiency may rely heavily on family members to interpret conversations or advocate on their behalf, creating additional challenges when discussing complex medical decisions. For Filipino patients who also identify as LGBTQ+, concerns about stigma, discrimination, or whether their identity will be respected can further complicate an already difficult journey through serious illness.

These experiences serve as an important reminder that culturally responsive care is about recognizing that every patient arrives with a unique set of lived experiences that shape what matters most to them.

Culture, politics, and economic conditions influence health long before a patient is referred to palliative care. I (Stephanie Chow) recall walking through New York City's Chinatown, where aging infrastructure, crowded streets, and limited neighborhood investment stood in stark contrast to nearby Little Italy just blocks away. The difference was a visible reminder that inequities are often embedded not only within health care, but within the communities where people live, work, age, and seek care.

For many immigrant families, barriers such as limited insurance coverage, transportation challenges, financial insecurity, and fears surrounding immigration enforcement can delay care until illness has become severe. I cared for a woman who delayed seeking emergency medical attention after experiencing sexual assault because she feared the consequences of interacting with the health care system. By the time she arrived, her condition had significantly worsened. Stories like these illustrate that health disparities are rarely the result of individual choices alone. They reflect broader systems that shape whether patients feel safe accessing care in the first place.

Improving serious illness care for AAPI communities begins with making the invisible visible. Palliative care teams can start by:

• Asking patients about their preferred language and dialect, rather than assuming one based on appearance
• Exploring who they would like to involve in medical decision-making
• Recognizing that health literacy, cultural beliefs, and social needs vary widely within AAPI communities
• Strengthening partnerships with trusted community organizations
• Investing in high-quality interpreter services and developing culturally responsive educational materials
• Collecting more granular demographic data that better reflects the diversity of the populations they serve

At the systems level, greater investment in AAPI-focused research, community partnerships, and workforce diversity will be essential to addressing longstanding gaps in care.

Ultimately, equitable serious illness care begins with curiosity and humility. Behind every broad demographic category is an individual patient with a unique history, language, culture, family, and set of values. Recognizing this diversity is not simply an exercise in cultural competence. It is fundamental to delivering the person-centered care that palliative care strives to provide.

• Caring for Asian American and Pacific Islander Patients with Serious Illness: Guidance for clinicians on providing palliative care to Asian American and Pacific Islander (APPI) patients, addressing health disparities, language, and cultural factors
• Health Equity Toolkit: Resources to help health professionals improve health equity for all people living with serious illness

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