Cultural Differences in Dialysis

Healthcare providers in dialysis see patients of all races, cultures and religions. They must coordinate care with their patients’ beliefs and practices. But sometimes, physicians ask patients to work around their customs for the patient’s own good.

Stephen Fadem, MD, a practicing nephrologist in Houston, Texas, sees ethnicities from all over the world. “We have people from the Middle East, Asia, South America and North America. We have patients from a variety of different religions: several different Christian denominations, Jewish, Muslim, Hindu,” he said. Fadem is vice president of the American Association of Kidney Patients (AAKP) board of directors and a member of the AAKP Medical Advisory Board.

“I do not profess to be the expert on sensitivity and all the differences between the cultures. I try to make up for that by being up-front and honest and gentle with patients,” he added. “I try to give them as much information as they feel comfortable with.”

Some cultures are extremely good about supporting the patient from a family perspective. In those cases, the families all attend to the patient and want to know everything. But in other cultures, the patient prefers to be the independent leader. And for those from a matriarchal society, the patient and family may defer to the matriarch to make healthcare decisions, instead of leaving choices up to the patient.

However, family can be a drawback. Some patients put the family’s needs before their own. “We have patients who, regardless of their needs, put the children or spouses first, and they will reorganize the schedule, or won’t dialyze or will skip treatments if it comes to putting their family first,” Fadem added.

The practice then has to work around that upheaval. In those situations, Fadem tries to introduce a social worker as early as possible. The social worker can assist in compromise, or in making alternate arrangements that satisfy both the patient and family.

Understanding Food Differences

But family is not the only problem—another issue is food. “Patients tell me their diets are challenging because they have to cook for their children, too, and can’t have their children eating the same things they eat. But some studies have shown that if they did, the children would probably be healthier,” Fadem said. His team works with the patients so they understand that diseases do run in families and that eating habits should often be changed for the whole family, not just the patient.

“I have learned to say ‘salt’ in several languages,” Fadem quipped. “I try to get the patient to understand that they do need to change their recipes. We have dieticians who visit with the families, find out the patients’ likes, then give them substitutes in the same ethnic range. But with the American diet, that’s extremely difficult. There’s no substitute for barbecue, and here in Texas, there is a lot of barbecue— it’s a food group.”

That is not to say that food is the only sticking point. Different backgrounds can introduce issues related to trust or privacy, end-of-life decisions, blood transfusions, medications, personal space and the importance of time (or lack thereof), which can wreak havoc with medication schedules. Other cultures may refuse a medication because a specific component came from an unclean animal. Any of these challenges can provide a roadblock in the continuum of care.

Some religions, however, say that the patient’s health supersedes any sacred laws. “Judaism is probably the easiest religion to deal with from a health perspective, because the laws allow for anything that will save your life. But a Jehovah’s Witness will not allow a blood transfusion and will die,” Fadem explained. “Years ago, a Jewish patient needed a valve replacement and it was a porcine heart valve. The patient said, ‘I can’t have this, because it’s not kosher. I have to ask my rabbi.’ The orthodox rabbi said, ‘You can have all the pork valves you want, as long as they keep you alive and healthy.’ In Judaism, dialysis on Saturday (the Sabbath) is OK—whatever it takes.”

To Live or Die?

Ultimately, Fadem said, he believes that, “It’s important that religions fundamentally should preserve life and preserve a person’s relationship with himself and other people. But in some religions, there’s an acceptance of the problem. Some people say, ‘You gotta die sometime, so I’m ready.’ With other religions, they say, ‘I want to stay alive and healthy as long as I have.’”

But some patients believe their ills are a punishment or trial from a higher power, and that they should accept the disease instead of treating it. Fadem said, “When I’ve talked about starting dialysis, the patient says, ‘I don’t think God wants me to start dialysis; it’s not natural.’ I’ve always told them the joke about two boats and a helicopter, with the man who says, ‘God will provide.’ (See sidebar.) One patient constantly heard that joke, about getting a fistula, and finally gave in. Religion is a convenient excuse but is just one of many.”

Judy Kauffman, RN, BSN, CNN, is clinical director of acute dialysis/apheresis unit at the University of Virginia. There is a wide variety of cultures and social classes at her facility, which also sees the homeless, the incarcerated, transgender patients, homosexuals, and other minority groups. Each background can create challenges in the healthcare setting—whether it be with caregivers or other patients.

Many differences Kauffman sees are due to ethnic backgrounds. “End-of-life decision-making is very difficult for the African-American population. Most family members will not make a decision to stop any life-saving measures,” Kauffman said. “Some patients have voiced that if they discontinue life-saving measures, they would be committing suicide, which is a sin. African Americans like touch and hugging; they are modest and need privacy when care is being provided.”

Touch: Is it a Good or Bad Thing?

It is generally obvious to the caregiver if the patient approves of being touched or not. Body language reveals the patient’s attitude before he ever has to ask you for more space. “If you have a Muslim lady come into the office, you don’t give her a big hug. Orthodox Jewish women are the same; they don’t shake hands either. Use body language; if you put your hand out and they pull back, you know not to proceed. Your job is to be very professional, and to err on the side of preserving the patient’s dignity and respect,” Fadem said. “A lot of my colleagues who are Hispanic are always touching and their hands are always out, and it’s enjoyable to be around them because they’re very friendly, but that would be the most touchy of cultures, whereas the Middle Eastern and Orthodox Jewish cultures are the most standoffish.”

Hispanics in Kauffman’s practice, she said, do not like direct eye contact and prefer not to be hugged. They prefer handshakes with strangers and will avoid confrontations at all costs. “They are focused on the here and now and leave the future in God’s hands. They are usually uncomfortable exposing their bodies in front of the opposite gender,” she added.

“Asian clients are quiet and respect their distance. They tend to avoid eye contact with those who are in authority as a respectful gesture. They are very private and may not share all information needed with healthcare providers. They prefer not to be touched. They are not focused on time, so the clinician must reinforce being on time for appointments,” she said.

“For Russian patients, direct eye contact is a sign of respect and trust. These patients usually do not show emotions in public. They value punctuality, and may seem demanding, difficult or impatient,” Kauffman explained.

However, stereotyping these cultures is a mistake, she added. “Healthcare providers are responsible for being culturally competent and for educating others about the cultures in which we live,” Kauffman said. “We take great pride in living in an area that welcomes a variety of cultures. With appropriate education to those who are stereotyping, we can bring focus and awareness.”

The Importance of Cultural Competence

Healthcare providers cannot provide good care without assessing both cultural group patterns and individual variations within a cultural group, Kauffman said. “Providing appropriate, cross-cultural care would not be possible if we did not form a relationship with the patient that consists of trust, respect, and understanding,” she added. “We must understand our own beliefs and know the biases that we bring in order not to create an environment that may offend the patient.”

The University of Virginia offers tools to assist in providing the best care possible. These include:

• A culture and communication tool kit, which includes a cross-cultural communication guide, Spanish communication chart, Spanish phrases, speech board, Russian communication chart, and Spanish and English TV guide.

• Interpreters available through patient and guest services.

• Cyracom phone, which offers over 150 languages.

• Communication tools for hard-of-hearing patients.

• Intranet Web site info on cultural and spiritual sensitivity, religious beliefs and practices affecting healthcare.

When working with specific communities, healthcare providers may require additional training to become culturally competent. For example, Native Americans may wish to depend on traditional healing and avoid dialysis altogether. Joni Walton, PhD, APRN, BC, RRT, the chairperson of the research committee for the American Nephrology Nurses Association (ANNA), recently wrote a detailed article about working with this cohort.

“Some believed in the old Indian ways, others rejected the old ways and traditions, and some blended the old and the new ways,” Walton said.

It was often difficult to convince these patients that they had a problem that could be treated with modern medicine. “If you read the results and the quotes from American Indian participants, you will see that standard education for dialysis did not help them transition into dialysis,” Walton pointed out. “Many American Indian study participants wanted cedar burned in the dialysis unit to carry prayers to the Great Spirit. And as nurses, we assume that people want to go on dialysis to live longer, but that may not be true for all people.”

Loretta Jackson-Brown, MSN, RN, CNN, is the incoming southeast vice president of the American Nephrology Nurses’ Association. Many of the challenges she has experienced have been related to communication. “The dialysis staff may not be reflective of the patient population; hence their lived experience is limited,” she said. “If no one on the staff speaks Spanish or Latin, etc., then communication is limited. Also, caring for persons with chronic illness depends largely on patient self-management—taking blood pressure pills, showing up to dialysis on time, taking phosphorous binders with meals, checking blood glucose. If they believe that the professional is responsible for that, then self-care at home will not happen. Most patients on dialysis have other comorbidities and frequent assessments and diagnostic testing. This can be a problem for a patient who is expected to work to help support the household. Instead, this person has become a burden.”

Another phenomenon is not related to the diversity of the patient, but to that of the staff. In communities where foreign physicians provide care to repay loans from federal programs, patients may complain about difficulty communicating with their doctors. “For example, in my work as a nephrology disease case manager in Georgia, patients are in a small town where the majority of individuals had Medicaid or Medicare and were poor white, poor black, or poor Hispanic. But the nephrologists were from the Middle East,” Jackson-Brown explained. “The patients complained about not being able to understand the physicians. There can also be problems amongst the healthcare team when male physicians from other countries do not believe that female patients and/or staff should have a voice in their care. They are seen as subservient.”

Duane Dunn, director of social work services for DaVita Inc., points out that although dialysis may be more common in certain ethnic backgrounds, it does not discriminate by social class, religion, gender or sexual orientation. “The dialysis population in the United States reflects the overall population of the United States,” he pointed out. “Based on the two major causes of end-stage renal disease, there are races that are more at risk and therefore their members are more likely to be on dialysis than members of other races.

“End-of-life issues are often driven by cultural and religious issues. Sometimes caregivers have to educate family members or religious leaders about stopping dialysis. Some patients’ cultures or religions are opposed to the idea; however, some patients also believe making that choice helps them maintain dignity and control,” Dunn said.

The most important element is seeing the patients as individuals and recognizing what makes them individuals. “By making our centers feel like communities, we create an atmosphere of sensitivity and respect. Patients are provided with educational resources in addition to the caregivers in the center, including patient newsletters, DaVita.com and the DaVita Diet Helper. We educate ourselves, our patients and their families so we all have an understanding of what’s important to each other,” Dunn concluded.

To counter differences between staff and patients, and to improve communication overall, it’s helpful to have a diverse staff that is reflective of the patient population, said Jackson-Brown. It’s most important to develop individualized care that supports the cultural beliefs of the individual patients. “Seek to understand how the patient desires to maintain cultural beliefs, and work to find a happy medium in which the required clinical interventions can be adopted while maintaining the wholeness of the patient,” she concluded. RBT