Asian Americans are least likely of all racial groups to have an end-of-life plan, new study finds

Current events have caused Asian Americans to think about death and end-of-life care more than any other group, according to a new survey.

But data collected by hospice provider VITAS Healthcare shows that while Asians might have those things on their minds, they aren’t discussing or writing down their plans. Instead, they tend to make dying a family affair, experts said, keeping illnesses private and palliative care services away.

“For the older generations, suffering was also an often-accepted part of life,” said Robert Nguyen, medical director at VITAS, who worked on the study. “There’s an expected level of stoicism as you are expected to bear a certain level of pain without ‘losing face’ or appearing weak.”

The annual survey, which was published at the end of April, documents how people across ethnic groups want their final days to look, as well as if they’ve taken the steps to make sure those plans happen.

As many as 41% of Asians surveyed said current events have caused them to think more about death, compared to 36% of Latinos, 27% of Black people and 24% of white people who said the same.

“The Covid-19 pandemic had a major impact on all of our lives and, unfortunately, we saw many people — even young people — passing away,” Ngyuen said. “We’ve also seen a rise in violence toward the Asian community.”

But when it comes to formally enshrining those plans, they have a starkly different experience.

Only 7% of Asian Americans say they’ve documented their advanced care plans, compared​​ to 25% of white people, 22% of Black people and 21% of Hispanic people. Two thirds of Asians surveyed said they simply didn’t know how to find information about it.

“For some immigrants, the idea of hospice and palliative care, even some pain-relieving medicines, may be entirely foreign,” he said. “Those things aren’t common in all countries and across all cultures. Many seriously ill patients go home to die with their families without external care.”

Culturally-competent care, translators and sensitivity from medical professionals is also important when it comes to bringing more people of color into these conversations, said Joseph Shega, VITAS executive vice president and chief medical officer.

“We know that many patients avoid conversations about death and dying and, honestly, they’re not the only ones,” he said. “Besides encouraging our patients to make these plans, we also need to equip our health care professionals to bring them to patients’ attention and initiate these discussions in a culturally-sensitive way.”

Keeping sick relatives at home and relying on family support are something inherent to many Asian cultures, Ngyuen said, but as a palliative care doctor, he sees that there’s room for medical and familial care to coexist.

Asked how they wanted to be treated in their final days, 63% of Asians, more than any other ethnicity, said they would want emotional support services. Hospice can be one avenue for that, he said.

“Since death and dying involves the entire family, it can be challenging in America as families are losing cross-generational support due to work and other activities outside the home,” he said. “One thing to remember about hospice is that it won’t take away from any of these traditions, it’s about increasing quality of life and giving people the compassionate care that they want.”

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