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Listening is doctor’s key to dignified end-of-life care

Paul Kleyman

PALO ALTO, Calif. — How does a doctor specializing in saving lives turn into one of the nation’s leading experts — and medical educators — on end-of-life care?

Dr. Vyjeyanthi “V.J.” Periyakoil says her 25-year journey from medical school in her native India to directing Stanford University’s palliative-care fellowship program taught her that the art of healing lies in listening to her patients. What she heard wasn’t always in the medical textbooks.

What they told her led Periyakoil to becoming a leading voice in the movement to re-conceptualize end-of-life care from limited hospice treatment in the last six months of life to comprehensive treatment for profoundly ill people.

“Much of my work had been on the importance of dignity in health care,” Periyakoil recalls.

She found that patients “cared more about concrete things — ‘Treat my pain first, take care of me first — then you can treat me with respect.’ For patients, that meant good pain care and symptom management, which is good palliative care.”

Periyakoil began her practice in the United States as a resident in the crowded wards of Stockton’s San Joaquin General Hospital. Her patients were mainly “migrant farm workers, people with no insurance, people who didn’t want to give you too much information” because of their immigration status or their fear they couldn’t afford the treatment being prescribed.

She said she felt especially awkward when the medical advice she offered proved irrelevant to her patients’ lives. “There was a mother of young children who had two jobs. I would tell her, ‘Why don’t you put your feet up? Why don’t you eat more protein?’ She’d try to answer, ‘Well, I have to get back to work,’ and I’d just continue to give the same silly advice.”

Sensing her frustration, it was the patients who tried to reassure her. “Oh, yes, I’ll do that, doctor…Don’t worry about me,’ they’d say.”

Struck by how many of her Stockton patients were immigrants, like herself, Periyakoil worked hard to make herself understood while also sensitizing herself to cross-cultural issues.

“When I first came to the U.S., I could read and write English very well, but because of my accent, my patients couldn’t understand what I was saying,” she recalls.

She focused on enunciating every English word clearly, and came to appreciate nonverbal forms of expression — like a worried look that exposed a patient’s unspoken concern. The better she was able to communicate, the more likely her patients were to follow her medical recommendations.

Later at Stanford Medical School, where Periyakoil studied geriatric medicine, she discovered another gap in her knowledge from patients who were deemed to have only six months or less left to live. Admitted to hospice care, their cure-oriented medical treatment would often be stopped in favor of “comfort” care.

“I had a hard time giving up on these patients,” she admits.

Her determination to improve the quality of their lives, no matter how much time they had left, led her to realize that palliative treatment should begin as soon as a patient is diagnosed with a life-threatening disease. Care provided only when someone becomes eligible for terminal hospice coverage comes too late to fully help them.

So, for example, the average hospice stay in the United States is now only 19 days. But palliative medicine begun much earlier reduces the agony and stress of disease so well that many patients actually survive longer. And family caregivers, relieved of constant stress, have been shown to live longer following a loved one’s death.

“Palliative care should be woven seamlessly into treatment,” noted Periyakoil, who is also associate director of Palliative Care Services at the VA Palo Alto Health Care System. “Patients shouldn’t have to know the word ‘palliative care.’ It should be something that is given to you when and where you need it because it is the standard practice.”

Periyakoil also discovered that patients who come from cultures that discourage — even prohibit — open acknowledgement of death and dying typically wind up having their referrals to hospice treatment delayed until it’s too late for them to benefit from broader palliative care.

At cultural boundaries of death

She learned that cultural boundaries around death could be violated in other ways. She recalls a home visit she made to see a young Chinese woman with late-stage cancer. “The husband opened the door silently, did not respond to my greeting and went into his wife’s bedroom. She must have died moments earlier. When I squatted down next to her body to check her pulse and prepare an official death pronouncement, her husband gently shook his head.”

Sensing she was intruding in a sacred moment, Periyakoil withdrew. At the door she wanted to offer her condolences but the husband once again shook his head and her words froze in her mouth.

“Later I learned that Chinese Buddhists believe the soul lingers in the body for some time after death” she said. “So they do not touch the body nor vocally express grief, as this might disrupt the passage of the dying person’s soul and prevent them from being reborn into a better life.”

To help doctors become culturally fluent, Periyakoil is producing a free, online text series addressing the sensitivities of 13 distinct ethnic groups, among them African Americans, American Indians, South Asians and East Asians.

She also is developing videos for an online series on the need for doctors and the public to share decision-making, titled “Can We Talk: Conversations with multi-cultural Americans about end-of-life care.” In the segments, professional actors depict scenes from common patient situations drawn from doctors’ real-life experiences.

At Stanford’s Palliative Care Education and Training Program, Periyakoil’s fellows embrace her holistic approach. “Palliative care is one of the few fields of medicine where you deal with the whole person,” says Thui Pham, an internist. “There are so many factors that impact life, not just the medical issues.”

“Palliative care is not about the end of life,” Periyakoil concurs. “It’s about how a patient can get the most out of every day.”

New America Media

End-of-life desires: A study

Stanford University palliative care expert Dr. Vyjeyanthi “V.J.” Periyakoil believes that contrary to conventional wisdom, most patients don’t simply want every medical intervention that may or may not prolong their lives.

Overall, people want appropriate care sensitive to their quality of life that enables them to experience their final days as fully as possible with minimal stress for their families.

In fact, a 2012 report by the California Health Care Foundation affirmed Periyakoil’s understanding of what patients hope for. First and foremost, Californians in the study said they didn’t want their families burdened by the cost of their care, or by having to struggle with troubling decisions about their treatment.

Also, participants in the poll said they wanted to be comfortable without pain and hoped to be “at peace spiritually.” On the survey’s list of 12 “Most Important Factors at End of Life,” people placed the desire “to live as long as possible” down at number 10.

The survey does show difference among ethnic groups. Although more than half of Latinos (56 percent) rated prolonging life as their top choice, only 18 percent of Asians did so, followed by 25 percent of whites and 43 percent of African Americans.

Palliative care is such a growing national concern that the federal Institute of Medicine launched its new Committee on Transforming End-of-Life Care in February.

— Paul Kleyman