For Indian Americans, Need Grows for Culturally-Sensitive Palliative Care

For Indian Americans, Need Grows for Culturally-Sensitive Palliative Care

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Photo: Gary Lee, MD, is chief of palliative care at Santa Clara Valley Medical Center. (Photo by Gerardo Fernandez)

SAN JOSE, Calif.--An elderly man was found unconscious on a bench in Santa Clara County, Calif. The person who discovered him called 911.

Taken by an ambulance to Santa Clara Valley Medical Center (CSVMC) in San Jose, Calif., the man, who had no ID, “received emergency treatment and was stabilized,” said Gary S. Lee, MD, chief of palliative care at the hospital.

“Between Life and Death

“He was on life support, in between life and death,” Lee said. He added that the man’s ethnicity could not even be determined.

“There was no way he would recover, and we had to make a decision how best to care for him. In a situation like that, it puts [the hospital] in a difficult place. Normally, it is the family or friends who make these decisions," he went on.

A social worker at the medical center took a photo of the man and showed it around at homeless shelters nearby, but the effort proved fruitless.  If no relative could be found, the hospital would have to form a committee to make a life-or-death decision, but that would be a last resort.

The man’s fingerprints were taken and sent to U.S. Citizenship and Immigration Services, resulting in an identification and the revelation that he was an Indian American immigrant.

The identification led to locating and contacting his two daughters, who lived in the Bay Area. They told the hospital that their father had lost his business and become despondent after his wife died. He had been living in the streets for some time.

After speaking with the medical staff about his condition, the daughters gave their permission to take him off life support.

As the South Asian American community increasingly deals with health problems among its growing and aging senior population, more of these types of cases are likely to occur. These families are feeling the stress related to end-of-life decision-making.

Most Wish Not to Burden Families

According to a 2011 California Healthcare Foundation’s statewide study of people who lost a loved one in the previous year, the most import concern for two-thirds of respondents was avoiding having a family member be burdened financially by their medical care.

Palliative care is specialized medical treatment for those with a serious illness — whatever the diagnosis — allowing them to get relief from symptoms of pain and stress at any stage of their illness. It need not be a pathway to death and patients can improve and return to relatively good health.

Hospice care is end-of-life palliative care meant to enhance the quality and dignity of life for terminally ill patients and their families, either at home or in a medical care facility.

“We have been doing outreach to diverse older adults, including Asian Indians, Latinos, Chinese, and Filipino older adults, to educate them about successful aging and end-of-life decision-making,” said Vyjeyanthi “VJ” Periyakoil, MD, director of Stanford University’s Palliative Care Education and Training Program.

“We have also been doing interviews to better understand their care needs,” she said.

Periyakoil co-authored an informative document for health professionals, “Health and Health Care of Asian Indian American Older Adults,” which lists the top five causes of death for Indians in the U.S. and how Indian American families can be nurtured by culturally appropriate prevention and care programs.

The paper also explains traditional health beliefs among Indian Americans and discusses culturally sensitive ways to deal with advance directives and end-of-life decisions. It explains in detail how Hindu, Muslim and other religious practices are to be taken in account in proving palliative and end-of-life care.

“It is not uncommon for older Asian Americans to depend on the family to make medical decisions,” said the paper, issued by the e-Campus geriatrics division of the Internal Medicine department at the Stanford School of Medicine.

“Older Asian Indians are much more likely to subscribe to a family-centered decision rather than making these decisions by themselves,” she said. “Typically, family members (especially the durable power of health attorney) are key stakeholders in the patient’s current and future well-being.”

Ongoing Immigration of Elders

Periyakoil noted, “There is ongoing immigration of Asian Indian older adults who are here to live with their children, as they have no social support in India.”

“Some of these immigrant older adults find it easier to assimilate into the American society. Those with limited health literacy and limited English proficiency find it challenging to get quality health care.”
Periyakoil provided excerpts from an interview she conducted with an “octogenarian Hindu male,” who has lived in the U.S. for 19 years.

He contrasted medical care in India and the U.S.: “In India you can straight away go [die]. All right, you take a breathing apparatus — something like that — it is easier. But here there are lot of norms and regulations.”

The man feels strongly that patients should be given “the facilities for advanced medical directives. Supposing I am clinically dead. There is no point in prolonging life. So, they must get a declaration…so that their children should not be put into problems…If you sign advance medical directives, you have a sigh of relief.”

The man said his wife recently “was talking [and] suddenly she had a respiratory failure. She [already had] signed [the advance directives],” he said.

He reflected, “See, after some time, we should not prolong our life unnecessarily…The doctors were able to take a decision after five or six days…Fortunately, they could make a decision. She passed away.”

“Many older adults in the Asian Indian community have very strong spiritual beliefs and practices,” Periyakoil said. “Their spirituality is an important aspect of their daily lives and helps them cope with serious illnesses.”

She continued, “In traditional Indian culture, elders are treated with respect and deference. Our data show that providing respectful care is a very important value for Asian Indians.”

Lee said Santa Clara Valley Medical Center started its palliative care program in 2006 and sees about 400 patients a year, of which just two to three percent are “East Indian,” despite the fact that Indian Americans make up 6.6 percent of the county’s population.

At SCVMC, the areas largest public hospital, patients in the palliative care unit are “mostly on Medi-Cal or lack insurance,” Lee said.

Culture, Language “Bubble Up”

Because the medical center sees people from so many parts of the world, cultural issues often “bubble up,” Lee added. There are many on the staff at the hospital able to translate in the main Indian languages, but if interpreters happen not to be available for face-to-face interviews, “we contact outside vendors,” he explained.

Lee said that Indian Americans, like many Asian Americans, often try to protect their loved ones from hearing bad news directly: “We like to think that we are experts, at least on palliative care, and we will disclose only as much as the patent wants.”

“I think South Asians, like the rest [of the population], are not exactly aware of what palliative care is and how it differs from hospice.”

Lee and Periyakoil agree that the Indian American community, which includes many individuals with technology or medical backgrounds, may be generally more savvy about advanced directives than some of the other immigrant communities.

Still, knowing what should be done and doing it are two different things.

“These people may not be sufficiently prepared for the last chapter of their lives,” Periyakoil said. “It is important to educate the community about using advance directives and POLST as a tool to document their values and preferences for care so we can honor and respect their choices.”

(POLST, or Physician Orders for Life-Sustaining Treatment, gives instructions to doctors about specific end-of-life treatments. For example, people can us the form to specify whether they want comfort care, limited intervention or a full treatment.)

“What is needed most,” the Indian American doctor added, is “more education in the community, more facilities, better trained medical personnel and translators to serve the palliative needs of the South Asian community.”

Periyakoil stressed, “Community in-reach is vitally important, i.e., educating members of the Asian Indian community so that they can reach within and educate their family and neighbors.” Stanford School of Medicine is currently offering a free Web-based mini-fellowship in Successful Aging and End of Life.

About 40 Indian Americans are enrolled in the mini-fellowship doing community service, Periyakoil said. Ciick here to find out more about this program.

Richard Springer wrote this article for India West through a California Healthcare Foundation Journalism Fellowship, a project of New America Media in collaboration with the Stanford In-reach for Successful Aging through Education Program.