Caregivers of diverse backgrounds may need special care themselves.
The diagnosis was bad enough: Breast cancer.
Cancer de mama.
But while Norma Davila, a native of Peru, was reeling from the news, she was also desperately trying to translate English into Spanish.
“The first time was bad,” she says. “I was very stressed out. Trying to understand what they were telling me, trying to understand the English in the middle of this very bad news.”
Now a cancer survivor, Davila is grateful for the medical treatment that saved her. But, like others who come from different cultures, countries and beliefs, she and her children wish that the nation’s health care system would also try to understand the nuances of what these families might need beyond chemo, radiation, surgery and post-op.
“Doctors just need to realize that we’re human beings too,” says Maria Louisa Aliaga, the caregiver for her 78-year-old mother, Maria Cordelia Carcamo who was diagnosed a year ago with lymphoma. “They need to work at more communication, more understanding of other cultures. It seems so basic, but it still doesn’t happen.”
It’s a problem that hospitals know exists and one that they address in the best way they can, often with limited resources. Some have created programs run by volunteers and operated with donations, while others have made small steps by providing one or two staff members to coordinate translations.
“We still have a long way to go,” says Gordon Hay, MSW, and director of Life with Cancer at Inova Health System in Fairfax, Virginia. “Many of us are realizing that we are not a melting pot, and that we need to recognize the differences of cultures—and how that plays into how families deal with cancer.”
When her mom was in the hospital, Aliaga says she constantly tried to get physicians to discuss treatment and medication plans. “I would say, ‘What do you mean by that? What is this medication?’ and they would just brush me off, saying, ‘She’ll be OK. The nurse will tell you anything you need to know.’ ”
Even worse, because her mom, from El Salvador, shared the room with an American, Aliaga got to see the contrast even more clearly. Behind the curtain, she says, there was “lots of talking with that patient and family … not so much with us.”
Cancer can create a perfect storm of distrust and disconnect between patients and health care workers, stirring up attitudes regarding death, gender, spirituality and power. And all of that can come up in any family.
For patients from other cultures, it can provide even more challenges.
In Islamic communities, the very word “cancer” can be considered taboo, according to Monty Fakhouri, the Minority Cancer Outreach Program Coordinator at Beaumont Hospitals in Southeast Michigan. “They refer to it as the ‘other disease’ and the ‘unknown’ disease and do not like using it in a conversation.”
Fear of authority can keep caregivers silent; religious or ethical beliefs can hinder the administration of traditional medication; family traditions can dictate that patients cede decision-making to the matriarch or patriarch of the family.
Norma Davila’s son, Roal Echevarria, is 24. And yet, he has been the head of the household since he was 18 and is now caring for his mother and grandmother. (His sister also helps but has been serving in Iraq.)
“I knew since I was very young that this would be my role,” he says. “I need to be strong so that she can stay strong.” But he admits that the responsibility can take its toll. “I think I have a lot more patience than others my age,” he says. “And yes, sometimes I do think it would be easier to be at home [in Peru]. No one has time here; everyone is very busy. I think in our country, families are more unified when someone is sick.”
From Detroit to Buffalo to Atlanta, the story is the same. The learning process often is difficult. But in the past few years, more hospitals and cancer centers are making an effort to bridge the gap.
“We need to recognize that the first part of the journey is to be able to communicate in a meaningful way with our patients,” says Stephanie Taylor, director of cultural competency at WellStar Health System in Atlanta. “And often that starts by showing respect: Respect of the culture, respect of the beliefs, respect that we might be different—but we will strive to find common ground.”
Taylor is part of a new niche in health care treatment called, “cultural competency.” This aspect of care concentrates on bridging the gaps between traditional medical treatment and diverse populations that so many hospitals and doctors now see.In addition, WellStar has also created a “cultural diplomats” program, which taps into the thousands of names at the facility, encouraging those from different communities to be a resource for those who might encounter a patient who is facing cultural or communication barriers.
We need to recognize that the first part of the journey is to be able to communicate in a meaningful way with our patients.
At Roswell Park Cancer Institute in Buffalo, New York, Beth Lenegan, PhD, director of pastoral care, embarked on a project to interview more than 40 different clergy members in the area. Through these interviews, Lenegan helped the Institute delve into cultural traditions regarding spirituality, illness and death, as well as modesty, dietary concerns and familial customs.
The project, which resulted in the booklet, “Caring Across Cultures,” revealed the following cultural differences:
> Amish rarely have easy access to phones, which means follow-up care needs to be done personally—sometimes on the farms. Amish also prefer German Bibles and come en masse, meaning groups of 10-15 at a time. This practice tests the standard regulation of “no more than two visitors.”
> Buddhists believe it’s extremely important to keep clarity of mind during the last stages of dying, meaning pain medications are a challenge for the patient and the physician.
> Japanese still struggle with lingering issues of guilt and shame with a diagnosis of cancer, which can greatly hinder survivorship support and family caregiving.
> Native Americans might want to provide traditional rites for a dying member of the tribe in the hospital, which is far different from the rites provided by a pastor or priest.
Now the Roswell Park Institute offers German and Korean Bibles as well as the Koran and other religious texts. For Orthodox, Jewish and Muslim women, the hospital is investigating buying new hospital gowns that are longer and more modest than the traditional mid-thigh, tie-in-the-back version. And its medical professionals learned that the concept of suffering is vastly different between Eastern and Western cultures.
Roswell also has patient navigators who help patients and their families work through the medical system as well as a program for the families that follows up as long as a year after a hospice patient has died to see how they are doing.
“We can’t expect any one individual to be a cultural expert on every group,” says Lenegan, who’s been at the Institute for 11 years. “But this has definitely been a solid, positive start.”
Even when the extended family is present, problems in communication can be overwhelming.
Veronica Martinez, MSN, Hispanic Outreach Coordinator for Life with Cancer, recounts the case of a 21-year-old Latina with brain cancer: The patient’s mother had become so distraught that she had a grand mal seizure and was being treated on another floor. Thus, the eldest brother took over as the spokesman and caregiver for both women.
Some of his decisions involved determining where the young woman should go for her final days. At first, he was compliant with the medical team’s recommendations for a nursing home. After he realized a nursing home’s limitations—no 24/7 visitation by her family, no regular visitations with her young son—he refused to cooperate.
The family was angry. The medical team was frustrated.
Martinez stepped in as the family’s advocate and began the slow process of educating the family about their options. In the end, the young woman was moved into home hospice—a much better cultural solution for everyone. And one of the best developments before she left the hospital: She attended her 3-year-old’s baptism in the hospital with all of her family.