Recent research has dug into the barriers limiting greater telehealth utilization among Asian American, Native Hawaiian and Pacific Islander (AANHPI) communities. The data come at a time when hospices are striving to better understand how to improve those groups’ end-of-life trajectories.
Technology utilization has gained momentum in health care, including in hospice care delivery. Though increased virtual health care access can help hospice providers reach patients upstream, the trend may be worsening disparities and outcomes among Asian American populations, according to Victoria Tsze, an outpatient hospice social worker at Tucson Medical Center (TMC) Hospice.
Hospices need a culturally-informed approach to close digital gaps among AANHPI communities that impact their dying experiences, Tsze stated. She is a first generation Chinese-American and also a member of Compassion & Choices’ Asian American, Native Hawaiian and Pacific Islander Leadership Council, which the Colorado-based end-of-life advocacy organization launched in 2021.
“A reliance on virtual health care can exacerbate inequities for Asian Americans if attention is not paid to ensuring language access, improving cultural competency amongst providers and supporting patients and caregivers in gaining greater digital literacy,” Tsze told Hospice News in an email. “It risks limiting people’s access to the health care and support they need at the end of their lives. When people lack access to care, they are less likely to have adequate pain management during the dying process and are more likely to have aggressive and invasive treatments at the end of life.”
Coupled with the telehealth disparities are inequities pertaining to hospice care. About 38% of a total 50,400 Asian American Medicare decedents elected the hospice benefit in 2022, according to the National Alliance for Care at Home. This is compared to 51.6% of more than 2.1 million decedents among non-Hispanic white Americans.
Research points to digital disparities
AANHPI communities face a host of unique challenges when it comes to telehealth access and use, according to Nicole Morgenstern, telecommunications, technology and media policy associate manager at Asian Americans Advancing Justice (Advancing Justice – AAJC).
Cultural, language and belief systems play a large role in how these communities view and interact with technology, as does the affordability and accessibility of online services and devices, Morgenstern said. Technology utilization directly impacts the health care trajectories of aging Asian Americans, she added.
“Cultural, language, and belief systems play a significant role in how technology is used within AANHPI communities, particularly among immigrant, elder and limited English proficient (LEP) individuals,” Morgenstern told Hospice News in an email. “Many AANHPI communities struggle to get online because of limited internet and broadband access. This adds to the existing gap — the digital divide — between people who have access to technology and the internet and those who do not. This can cause serious challenges in accessing the essential resources.”
Two reports recently unveiled from the Advancing Justice – AAJC have examined the leading factors driving digital health disparities among AANHPI communities nationwide.
One report found that barriers among these populations include a lack of access to the internet, digital tools and devices, as well as insufficient resources guiding online safety. The other report found that technological education and equipment impact digital literacy levels and well-being among Asian American populations.
The Advancing Justice – AAJC research found that about 17% of AANHPI households nationwide do not have access to high-speed internet in their home. Roughly 14% of the communities with internet access reported poor or unreliable connections.
The data highlight how different Asian ethnic communities have unique risk factors compared to others that impact their digital literacy levels and access to devices such as laptops, smartphones and tablets, according to Morgenstern. One such factor includes technology costs, which affect AANHPI communities’ access to health care information, virtual care and assistance programs, the research found.
Fear and mistrust of technology represent additional factors driving disparities, particularly among AANHPI seniors, Morgenstern stated. Reluctantly among aging Asian Americans may be exacerbated by the lack of culturally appropriate education and support.
Understanding the leading barriers can help hospice providers shape their outreach efforts and services to improve end-of-life outcomes, she indicated.
“Significant subsets of the community are being left behind by the digital divide,” Morgenstern said. “Bridging the digital divide in AANHPI communities so that they are empowered to fully participate in society is not one-size-fits-all. It requires more than just providing access. It requires developing culturally competent solutions that resonate with the unique experiences and needs of these communities.”
Addressing the barriers
Language barriers are among the most significant factors preventing greater virtual health care awareness and utilization among AANHPI populations, according to Clayton Fong, president and CEO of the National Asian Pacific Center on Aging (NAPCA).
While some hospice providers have included language translations in their public outreach efforts, the messaging does not always accurately reflect the nature of their services to older Asian American adults, Fong stated. They may speak English fluently, but their decision-making processes are often in their native language. This means information about end-of-life care options can literally be lost in translation due to the various languages and dialects spoken among AANHPI communities, he indicated.
Though artificial intelligence (AI) can help bridge some communication and language gaps, telehealth has much room for improvement, Fong indicated.
“Language access is a giant barrier for older Asians,” Fong told Hospice News. “These days AI-generated translations are pretty good, but I’m still apprehensive about the accuracy. Even a 5% error rate introduces some pretty big mistakes. If they’re only receiving a certain percentage of the information in their language, that can be dangerous and harmful, so the language issue is gigantic.”
Having better virtual health care access could help improve patient engagement, caregiver satisfaction and collaborative, goal-concordant care for Asian American populations, said Dr. Mitsuo Tomita, a retired family physician whose career spanned 33 years at Kaiser Permanente. Tomita is also a member of Compassion & Choices’ AANHPI Leadership Council.
Focusing on diversity in digital health care literacy could help improve timely access further upstream in a patients’ illness trajectory and lead to more advance care planning conversations that address their priorities and needs, he stated.
Culturally- and linguistically-appropriate messaging are an essential part of narrowing disparities for Asian Americans, said Tomita. Among the important steps for hospices to integrate into their inclusivity efforts is having digital communications available in various languages and having diverse representation among their interdisciplinary staff. This involves having language-specific services available to a range of AANHPI patients and their families to help ensure their understanding around supportive end-of-life resources, he stated.
“Digital literacy support can be provided to help patients and their caregivers learn how to effectively use and navigate virtual health care platforms,” Tomita told Hospice News. “Communication and language accessibility can be improved by having virtual care platforms available in different languages, translating relevant documents and resources, and offering interpretation. Health care providers, whether working digitally or in person, should also be more robustly trained on culturally-competent care.”
Companies featured in this article:
Asian Americans Advancing Justice (AAJC), Compassion & Choices, National Asian Pacific Center on Aging (NAPCA), Tucson Medical Center (TMC) Hospice