The Color of Care in Aging America
This article is adapted from a story Matt Perry wrote as part of the MetLife Foundation Journalists in Aging Fellows program, a collaboration of New America Media and the Gerontological Society of America. California Health Report/New America Media, News Feature, Posted: Aug 05, 2013
Part 2. Read Part 1 here.
LOS ANGELES--During his first presidential campaign, Democratic hopeful Barack Obama famously claimed that Americans discussed racial conflicts honestly – behind closed doors. Some experts in aging say it’s now time to break open those same doors and look at America’s caregiving crisis — and its growing issues of race – just as honestly.
The country’s heralded melting pot is quickly becoming a complex racial stew at both ends of the nation’s caregiving spectrum: for those needing care--and for the family members and hired workers providing it.
Undocumented Caregivers in “Grey Market”
As of 2011, 20 percent of the country’s 4 million hired caregivers were foreign-born, according to the Paraprofessional Healthcare Institute (PHI), which represents direct caregivers – hired nurses, home health aides and personal attendants.
Yet that number doesn’t include the “grey market” of workers employed directly by families that include immigrants – among them undocumented workers. Some even suggest the actual number of immigrant caregivers is closer to 50 percent.
While race, culture and religion shouldn’t affect the care provided to older adults, the reality is simple: It does.
John Booker has seen it throughout his 35 years as a caregiver.
He recalls meeting an Orange County, Calif., woman whose son moved her from facility to facility hoping to find quality care. Finally, she was placed in the hands of Booker – who is African American.
“She needed help getting to the toilet, and she didn’t want a damn n----r to do it,” laughed Booker.
“After she attacked me, I knew my reaction was extremely critical at that point. I put my best professional face on.”
Afterwards, the tearful woman thanked Booker for his help, as did a young man standing outside the room who watched the interaction – her son was also an owner of the long-term care facility.
Overt racism, while rare, is indicative of the continued struggles Americans face when it comes to race – particularly in an intimate relationship like caregiving.
During his own long career, Booker noted, who founded the National Association for Direct Care Workers of Color, “I would say 40 percent of the time there was some initial friction [over race].”
Booker said his typically female colleagues – Latinos, Filipinos, Caribbean Islanders and recent African Immigrants – are acutely aware of race in the workplace.
“They will get some of the same racial slurs and looks,” he said. “You hold back your emotions and continue to give quality care.”
Cultural, Religious Impacts
A Stanford University researcher says that race and ethnicity are often linked to cultural and religious views – which may affect care. In fact, her study of multicultural nurses in long-term care settings found something shocking: During end-of-life care, some foreign-born Catholic nurses felt the dying experience shouldn’t be altered by using painkilling analgesics.
“They felt that experiencing pain and suffering at the [end of life] afforded the dying patient an important opportunity for spiritual redemption,” reads the small study of 45 Filipina nurses, led by V.J. Periyakoil, MD, director of palliative care education and training at Stanford’s School of Medicine. “None of the U.S.-born nurses endorsed this concept.”
Periyakoil – who admitted “we were pretty surprised” at the results – described the concept of “redemptive suffering” in this way: “Sometimes people feel that God is giving them these experiences, and part of their faith is to bear these experiences with as much patience as they can. How the religious beliefs of an individual nurse – or doctor – affects how they provide care is a bit of an unknown.”
She continued, “If I’m the nurse who believes in the concept of redemptive suffering. . . . I may not offer that [painkiller] to the patient, even if I see them in pain.” In fact, she said, some patients welcome this sense of redemptive pain, but nurses need to give a patient the choice.
In another example of the enormous influence of cultural and religious views on care, Periyakoil described the family of a Chinese American patient with esophageal cancer. He feared that if he died on an empty stomach “he would wander throughout eternity as a hungry ghost,” she said. He was given a feeding tube.
Periyakoil adds that cultural differences strongly influence caregiving behaviors.
Caregivers who acknowledge “familismo” and “respecto” within more collective, group-oriented Latino families will gain their trust. Conversely, Periyakoil said, more individualized cultures like Germans thrive on care that fosters patient autonomy and more direct, factual communication.
Compassionate Care Despite Language Limits
To many, cultural differences can actually prove beneficial.
Carla Troutner said her tiny 4-foot-11-inch mother had two homecare aides in the San Francisco Bay Area – one white, the other Haitian. While the white caregiver provided acceptable care, the Caribbean caregiver offered a uniquely calm disposition her mother adored.
“She just followed her around the house,” Troutner said of her mother.
Sadhna Diwan recalled a long-term care facility staffed almost entirely with Latino caregivers – some who spoke virtually no English.
“This became a real bone of contention between the families and the hired caregivers,” said Diwan, director of the Center for Healthy Aging in Multicultural Populations at San Jose University’s School of Social Work.
Yet the Latino workers’ compassionate care happily countered the language barrier. “The love and affection and care they show for my parents – even I don’t do that,” stated Diwan.
Some advocates in aging, though, claim ethnic differences in caregiving are being overstated – and education is leveling the playing field.
MariaElena Del Valle cautioned that ethnic differences in healthcare are slowly being filtered out. Training for today’s hired caregivers increasingly focuses on removing these cultural differences, she said. The goal: Don’t impose your belief systems – personal, cultural or spiritual – on the patient; ask patients about their preferences.
“When you’re meeting for the first time we ask you to be curious,” said Del Valle, an organizational-change consultant with PHI. “Active listening means that you focus on the perspective of the speaker, and that requires the listener to let go of cultural biases that come up.”
Del Valle has already seen the effect of culturally sensitive training for hired caregivers – both at home and at long-term care facilities.
“They’re already seeing results, and the home health aides are asking for more training,” she added.
PHI claims the United States will need another 1 million paid caregivers by 2020, and says personal care and home health aides are growing faster than any other profession. In fact, by the end of this decade the group predicts caregivers will be the largest occupational force in the country – topping both K-12 teachers and law enforcement personnel.
Since caregiving often requires no formal education – especially in the underground economy – these jobs are expected to go increasingly to immigrants – from Latin America, the Philippines, the Caribbean and elsewhere.
Cultural Competence
Diwan said the programs at San Jose State University focus on “cultural competence” in diverse populations – respecting the unique culture and needs of patients.
For families taking care of older adults themselves, cultural attitudes run deep. Diwan observed that many immigrants from traditional cultures see caring for their aging parents and grandparents as an important responsibility.
Yet this admirable reverence can have also have negative consequences, she said. “Often times [family] caregivers will burn themselves out because they feel like they have to do everything.”
In addition, ethnic adults are also aging, with Latinos on the fastest-rising curve. Stanford’s Periyakoil said America’s aging “silver tsunami” – over 8,000 citizens turn 65 each day – now has a new name. “People are actually talking about the silver-brown tsunami,” she commented.
With an aging ethnic population and more immigrant caregivers, Americans should prepare for a colorful future: Filipinos providing care for older Latinos, African-Americans helping aging Russians, and Asian caregivers assisting Afghani elders.
Del Valle said all of these complex issues of race need to be explored in the open. “I consider the very act of asking this question to raise awareness,” she said.
John Booker of the National Association for Direct Care Workers of Color agreed, “I would hope that it would disappear with the younger generations.
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Dr. Oliver Fein: Let's start with what Medicare does well. [Medicare] is a situation where when you turn 65 and have worked 40 quarters, or 10 years, in this country, you're eligible. The simple eligibility of Medicare is just wonderful, and I think people really appreciate that. 
