Mona Jung’s father had an attitude of quiet resignation to lung cancer
— especially when it came to the side effects of his treatment. When nausea and fatigue overwhelmed him, he said nothing. When hunger eluded him, he played the tough guy. Yet, when Elvis Ngai Kwan went to visit his oncologist he painted a positive picture of his health.
"The doctor would say, ‘How are you feeling’ and my dad would say, ‘Fine, good, I feel wonderful,’" said Jung who, along with her brother, attended doctor visits with her father. "I think he did that to protect us, but he was not being honest. He should have told the doctor he was not feeling well."
It was not the first time Kwan had hidden the truth. Before being diagnosed, he hesitated to mention to his primary care physician the persistent cough — one of the first hints of his disease — that had been bothering him for more than a year.
In his mind, the doctor-patient dynamic involved the doctor doling out advice and the patient taking it — not the other way around.
"I think in the old culture, the traditional Asian one, you do whatever the doctor tells you and you don’t question them," said Jung during an interview at her home in Arcadia, California, last month. "My father was good about going to the doctor but he didn’t communicate. That’s not right."
It has been three years since Jung’s father died, but she still bristles about those interactions. When she was diagnosed with stomach cancer about two years ago, she took the opposite tack and really advocated for herself.
"I think sometimes I bother my oncologists more because I learned from my father’s experience that communicating with your doctors is so important," said Jung, who is being treated at City of Hope. "My father was being tough and he shouldn’t have. He should have been like me and complained."
Jung’s more assertive attitude about her own cancer diagnosis may be generational — a positive side effect of acculturation — but studies suggest it is not the norm. A 2010 review
, "Barriers to Healthcare Among Asian Americans," in the journal Social Work in Public Health
, stresses that cultural rifts and language barriers are common in interactions between the health care system and different Asian-American groups.
Noe Chavez, Ph.D.
And such breakdowns do not always travel in one direction, as in Kwan’s case.
“The patient may not feel comfortable enough to express themselves but it may also be the provider who is not sensitive to certain cultural nuances,” said Noe Chavez, Ph.D., a population researcher at City of Hope. “Language and cultural barriers may make it difficult for physicians and other providers to pick up on certain cues."
The ‘Myth of the Well-adjusted Asian-American’
Communication challenges between some Asian-American groups and the health care system sometimes begin with caregivers subscribing to the “Myth of the Well-adjusted Asian-American,”
suggesting Asian-Americans are physically healthier and financially better off than Caucasians, according to the "Barriers to Healthcare" study.
Such misguided assumptions do not just derail the possibility of open communication between doctors and patients, they also detract focus from the need to pour resources into in-language and in-culture resources for patients and caregivers.
Other issues may also influence the quality of care: lower health literacy among Asian-Americans about cancers that disproportionately affect their communities (such as stomach cancer
among Korean-Americans and lung cancer among Chinese women
), inadequate insurance coverage, immigration status and language.
Beyond the issue of patients being less than forthright with health information — as in Kwan’s case — other communication challenges and scenarios may unfold. An English-speaking doctor communicating with a native-language speaker — using an English speaking relative as a conduit — may misinform that patient. Conversely, a native-language-speaking relative or caregiver conveying information from an English-speaking doctor to a native-language-speaking patient also may relate wrong information.
“When it comes to treating patients with a different background the language issue is always there if the provider doesn't speak the same language,” said Chavez. "Even with an interpreter, you're communicating about medical issues and using terminology that can be difficult to translate, so a lot can get lost in translation."
Yanghee Woo, M.D.
, a gastric cancer expert and surgical oncologist at City of Hope, says non-English speaking patients are common in her practice since her patient population is about one-third Asian-American (including mostly Korean and Chinese patients), one-third Hispanic and one-third non-Hispanic whites.
Yanghee Woo, M.D.
“Because of the ethnic diversity of the patients we are treating, we need to create an environment that is culturally friendly,” said Woo, also the director of the Gastrointestinal Minimally Invasive Therapy Program.
Woo says communication issues for Hispanic and Asian-American patients she sees can be wide ranging — from not being able to ask for assistance when lost on the way to appointment in the hospital, to not being able to fully understanding information about treatment options.
These experiences, and the inevitable missteps they cause, have been a learning experience for staff at City of Hope — leading to a more culturally sensitive workflow. It starts with simple things, like Woo’s habit of greeting a patient in his or her native tongue.
“Of course, we use an interpreter to communicate with our patients who prefer a language other than English, but if I walk into the room with an elderly Chinese person who I know prefers Mandarin then I greet them in their native language.
"A 'Nǐ hǎo!’ can break a little bit of the wall between English-speaking surgeon and the Mandarin-speaking patient. It’s my way of saying, 'We care about you.’”
Other workflow changes at City of Hope include culturally diverse staff, including nurse practitioners, coordinators, patient navigators and fellows who are multicultural and multilingual — and having translators available for appointments and during treatments.
One study included in the "Barriers to Healthcare" review
found that, “Chinese and Vietnamese patients with limited English-speaking skills appeared to refrain from asking questions about their health, compared to their counterparts with better skills.”
Not asking questions and not being involved diminishes every level of care, as was the case with Jung’s father, Kwan.
“It’s really important because it impacts the way the patient feels,” said Woo. “Patients should be made to feel like they are being very well taken care of, but if they can’t tell me how they feel, or don’t think I understand what they are saying, that must be a horrible feeling.”
Shrouding sensitive health information
Another layer to the conversation about difference involves sensitivity to culturally-based family dynamics. Before coming to City of Hope, when she practiced in New York City, Woo says she had to respect different cultural ideas about cancer.
In one case, several years ago, the daughter and granddaughter of an elderly Hispanic patient sat in her office worried that she would tell the patient about her stomach cancer diagnosis.
“They wanted to protect her from the bad news,” said Woo, who says she sees similar situations among Korean Americans. “They wanted her to live her life happy without knowing she has cancer.”
In these situations, Woo respects the family’s wishes as long as the patient consents to communicate through the family. But she believes that a well-informed patient who is able to participate in their diagnosis — and the concerns that arise around symptoms, treatment options, and side effects — is a more effective advocate for their care.
"The unknown is scarier and more stressful than knowing we will be here to take care them, no matter where the cancer diagnosis leads,” she said.
Woo also understands how pronounced the stigma of cancer is in some communities. The word still stings, especially among those not versed about the widening world of treatment options.
Slowly, however, Woo sees that attitude changing.
"In the past, many wanted to shield their elderly family members from the mental and emotional suffering associated with cancer," said Woo. "Either they had bad personal experiences or believed in the worst outcomes. With increased awareness of the improvements in cancer care, they’re being more transparent.”
That more transparent, modern sensibility was something Kwan adopted — somewhat — when he was diagnosed with lung cancer. When he started receiving treatment, he passed the reins to Jung and his son Tom. They were poised to be his advocates, to say the things he could or would not, but even as they became involved in their father’s care, he would withhold information about his struggles — even from them.
Jung and her father Elvis Ngai Kwan
Jung believes with more candor — and clearer communication — her father might have lived longer. “If my dad was diagnosed earlier, if he would have been more communicative, he would have had a better chance,” she said.
If a glimmer of meaning could be extracted from her father’s experience, it is how it has shaped her own. Jung is a fierce advocate when it comes to her care.
She is about a year removed from a successful chemotherapy
and radiation regimen — and robotic surgery, performed by Woo. She is enjoying life, while at the same time remaining vigilant, informed and vocal about her health. When something feels off, Jung does not hesitate to speak her mind.
“Doctors cannot read our minds so I feel like keeping communication open and clear and not take anything for granted is so important,” said Jung. “Being proactive, not being in denial, doesn’t just get you diagnosed sooner, it gives you peace of mind.”
Stories of Hope is a monthly series that explores important issues in health care. To commemorate National Minority Health Month, we are dedicating the entire month of April to health care disparities.