Stanford Program Educates Indian American Elders on End-of-Life Care

Stanford Program Educates Indian American Elders on End-of-Life Care

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Photo: Tai Chi instructor Sharoan Jeung (left) with iSAGE mini fellows Ranjita Chakravarty (on her right) and Rekha Marathe (far right) are shown with Indian American seniors who participated in the skits (from left) Meera Ramachandran, Chandra Lakhani, Aruna Sheth. (Reena Rathore photo)

SARATOGA, Calif. — Chandra Lakhani traveled back and forth between India and the United States for several years before finally making the U.S. her base in 2004, to take care of her grandchildren after her young daughter-in-law passed away.

Lakhani, now 66, has her hands full keeping up with her current health care needs and fears a further decline in health over time, but for now she is making efforts to keep other illnesses that can plague older adults as far away as possible for as long as possible.

As of the year 2004, Indian Americans constituted 18 percent of Asian Americans residing alone in this country with around 4.5 percent of them being age 65 or older, according to the U.S. Census. With the ongoing immigration of older adults like Lakhani, who come here to join their children, the need to provide information and assistance to them so they are better able to navigate the perils of aging is rising as well.

“We should be more active physically, take care of our diets, exercise and interact more with seniors, but I feel we need more help from doctors, families and society also,” Lakhani told India-West.
Stanford University’s Successful Aging Program (iSAGE) addresses that critical need by educating Americans across racial and ethnic groups on how they can help elders achieve greater independence and healthier lifestyles, thus making the golden years shine.

iSAGE for End-of-Life Care

The free Web-based mini fellowship program, iSAGE gives an insight into the world of care giving and seeks to train both health care professionals and members of the general public who are serving or want to serve an aging population through culturally appropriate prevention and care.

The mini fellowship under the direction of Vyjeyanthi “VJ” Periyakoil, MD, director of Stanford University’s Palliative Care Education and Training Program, is also awarded through day-long training but for successful completion, both online and in person, requires doing a community project within the ethnic group they serve that imparts health education to at least five older adults with limited English proficiency.

“Communities want to come together for a day and have a compressed learning experience so they can get all the knowledge that they need to get to the next step,” said Periyakoil.

She considers the community project as the most important part of this entire endeavor, “that’s where the learning is and people find their area of interest and strength and then use that to help seniors.”

While monthly enrolments are possible for the online course (click here for more information), Periyakoil added, the live one-day training option, also free, has to be organized and requires a minimum of 30 people. 

Aging Among Indian Americans

In order to reach out and connect with a larger Indian American audience, iSAGE mini fellows Ranjita Chakravarty and Rekha Marathe chose to present skits at Anandvan, the Indian Cultural Center in Saratoga, Calif., as part of their community project.

Aiming to create awareness and help Indian older adults make informed choices, they addressed three key areas, i.e., fall prevention, patients’ right to know their diagnosis and treatment options, and awareness and signing of advance directives.

They also recruited four senior citizens as actors including Lakhani and presented the skits to 30 Indian Americans with a majority of them over 70 years of age.

“We thought this is a good medium to express what they feel, a good tool to put forward these important issues,” Marathe said.

“The assumption was that the seniors who arrived recently may be more financially and emotionally dependent on their children. Generally, Indians approach medical issues as family and often adult children make decisions for their aging parents,” noted Chakravarty.

The audience was educated on how to prevent falls by keeping walkways free of clutter, getting handrails installed and staying active to increase longevity of body and mind.

Everyone in the audience related to the skit on falling and eight admitted to falling in the past year and becoming extra careful after that. The skit was followed by a Tai Chi demonstration to improve balance by Sharoan Jeung.

“Tai Chi is a very low-impact exercise. Some of the movements are really good for your brain and helps in coordination of various body parts. Good for people who have had strokes or other injuries,” said Jeung, a Tai Chi instructor at the Saratoga Senior Center.

Indian American families generally do not share the prognosis with older adults as they often perceive it as their responsibility to shield elders from bad news.

“Family members may request the physician to withhold information from their loved one who is ill due to the concern that the truth about the illness may negate the will to live,” says a Stanford report, “Health and Healthcare of Asian Indian American Older Adults,” which Periyakoil co-authored with Shalini Dara, MD.

After the patients’ right skit, the majority said they would like to know of a terminal illness.

Advance Directives

“Advance directives” are documents in which patients can communicate their care preferences in terms of treatments and life support while they are able to think objectively, thus gaining more control over end-of-life medical decisions.

“Lot of times, “Periyakoil said,, “people worry that if they sign advance directives it’s a binding contract and later on doctors will say well, you signed that, so I am not going to do anything for you but the reality is so far away.”

“They are mainly to help patients clarify their own values and thinking about this process so that doctors can provide patient centered care,” she explained.

“If the treatment is beneficial,” the Indian American doctor stated, “we definitely do it but if itthe treatment burden becomes worse than the disease where you are not prolonging life but the dying process, that’s where advance directives allow patients a voice.”

But end-of-life is a sensitive stage and its discussion can bring about difficult emotions.
The skit depicted how Indian elders do not openly discuss issues related to death or dying and consider the conversation as inappropriate and uncaring.

Not surprisingly, the skit on Advance Directives, which was followed by a panel discussion, elicited the maximum questions. Only six had signed it and the rest were eager to know more and were willing to consider completing it after the presentation.

“It’s up to you how you want to face your end. It might be too late when I am ill. I have signed my Advance Directive and my family knows what I want,” Lakhani said. Stanford posts an Advance Health Care Directive Form online.

The States of California only requires adult witnesses and does not call for the seal of a notary public to validate an advance directives, but Periyakoil said that among all the ethnic groups she has worked with on a community project, only Indian Americans, though open to the advance directives, stressed the need to notarize the signature, thus rendering it more legal.

“They felt that if there was a discord in the family with different kids wanting different things for their elderly parents, and if there is a notarization, no one feels like they are on the spot,” Periyakoil said.

Avoiding Family Conflict

iSAGE mini fellows Ranjita Chakravarty and Rekha Marathe plan to highlight this specific aspect through another project focusing on how to ensure loved ones’ last years aren’t marred by constant bickering and family conflicts.

“We definitely need more support and community efforts to put forward these issues,” said Marathe.

Echoing similar sentiments, this is what some of the seniors who participated said: “Many times doctors and children think from their perspective and we have something different in mind. You just want a peaceful death,” said Chandr Lakhani.

Aruna Sheth, 76, who learnt of advance directives after participating in the skits, said, “Sometimes children argue or feel guilty or are also worried of what society will say for taking a particular type of decision, so it’s better to say what you want.”

Meera Ramachandran, who has been in the U.S. for the last 40 years, said, “My husband said why should we give problems to our children to decide and increase their headache. We are only going to live whatever life we have.”

Reena Rathore wrote this article for India-West supported by a New America Media fellowshipin collaboration with the Stanford In-reach for Successful Aging through Education, or iSAGE program.