Major misperceptions about palliative and hospice care persist in immigrant communities, including the Indian American community, according to palliative care health professionals.
“It is a major concern that those in immigrant communities equate palliate care services with near death and end-of-life treatments,” Dr. Suresh Reddy, section chief and director of education of the Department of Symptom Control and Palliative Care at the M.D. Anderson Cancer Center in Houston, Texas, told India-West.
“And a lot of (Asian immigrants) don’t even want to hear the term hospice. They definitely view that as a death place.”
Physicians Mihir M. Kandar, Jacob J. Stand and Elise C. Carey, writing in the Mayo Clinic Proceedings recently about palliative care, said, “Palliative care was often errantly equated with only providing end-of-life care. In practice, this led (and unfortunately still leads) to palliative care involvement occurring late in an illness.”
At that point, they said, it is too late to benefit from many of palliative care’s interventions, such as reducing pain and symptoms in ways to stabilize the illness and minimize the need for emergency care.
Reddy said he frequently has to educate Asian immigrant families about palliative care.
However, after realizing that a key part of palliative care is management of pain in the “early trajectory of disease,” “they are okay with it and are quite satisfied,” he said.
Immigrant families are also more likely to resist taking drugs for pain, because they have misconceptions about “psychological addiction” to narcotics, the Houston physician said.
Many in the Indian American community fail to look for palliative care options because they don’t know about the low-cost resources available.
Ratan Kumar, who is involved in hospice nursing in the San Francisco Bay Area, told India-West, “Overall, we need to teach, or make our Indian community aware of all the benefits of health care that can be provided to them at low cost or no cost. I think due to lack of knowledge and (being) afraid to pay the high cost of medical bills, some elderly people are not getting the care they need.”
“I remember talking to this nice (Indian) lady I met in a family event. She was 70 years at the time and was visiting her family here in the U.S. and extended her stay. She didn’t have visitors insurance because she couldn’t afford that, and she needed her blood pressure medication. Due to the cost, she would try to cheat herself and take it only if she thought it was needed.”
Another problem in the Indian Americans community, mainly with older adults and recent immigrants, is that they persist in expecting to be treated in the U.S. how they were treated in India.
Dr. Vyjeyanthi “VJ” Periyakoil, director of Stanford University’s Palliative Care Education & Training Program, is the co-author with Dr. Shalini Dara of the paper, “Health and Health Care of Asian Indian American Older Adults.”
The report notes, “Older (Asian Indian) patients may complain about or criticize the extensive diagnostic tests they have to undergo in the U.S., because, different from their home country, many older physicians prescribe medications without any diagnostic tests.”
Reddy, who will be working with Tata Memorial Hospital in Mumbai this summer on a study of end-of-life care in India, said patents in India are even more resistant to being treated with drugs like morphine due to addiction fears.
Families of those with terminal illnesses in India are also more likely than Indians in the U.S. to shield patients at the end of life from knowing about their medical conditions or talking about death or dying with physicians, he said.
“And anxiety and depression are under-diagnosed (in India). That is another issue we need to crack there,” he added.
Another factor that hospitals, hospices and palliative care training programs need to emphasize is that spirituality gives comfort to many Indian Americans at the end of life.
“Asian Indians typically tend to value spirituality and traditions,” Periyakoil told India-West.
“Many older and more traditional Hindu adults may believe their illness is caused by bad karma from a past lifetime, and they may not entirely believe in the organic etiology propounded by Western biomedicine,” the Stanford report says.
“As a result, an illness may be viewed as something to be accepted and endured, rather than fixed or cured. In some situations, these beliefs may induce a quiet fatalism that can result in therapeutic non-adherence,” the study adds.
“From what I have experienced,” said Kumar, “I think hospitals are sympathetic towards dying family members. In our culture, we normally have our priest or a recording recite our holy book, the ‘[Bhagavad] Gita.’”
“It is supposed to give peace to the person leaving this world and to family members. Now hospitals are allowed to do this — which is a big step in learning and understanding our culture,” Kumar explained.
But Reddy said a support system for end-of-life care is still lacking in immigrant communities, particularly for advance directives enabling people to write out their treatment wishes if they become unable to communicate or for other end-of-life decisions.
“And, it doesn’t matter which religion you practice, we suffer equally. We think we are prepared for death, but we are not,” he said.
(This is the second of a two-part series on palliative care funded by a New America Media Palliative Care Fellowship in collaboration with the Stanford In-reach for Successful Aging through Education Program and sponsored by the California Health Care Foundation. The first article appeared in India-West Oct. 4, 2013.)