Ana Contreras always knew she would be caring for her father, 103 years old and suffering from congestive heart failure. She even wrote a poem about it 15 years earlier: “Now it's our turn …” was its steady refrain.
She also knew that she would not allow her dad, Elias Contreras, to suffer and die the way her mother, Susana Contreras, had — in a hospital.
"I won't allow harsh things, painful things, unnecessary things to be done. Absolutely not,” Ana Contreras says.
However, having her father in hospice never was part of the plan. “When I heard the word ‘hospice,’ it was like hearing the word ‘cancer,’ “ says Contreras, 56, who lives in the Phoenix area.
She had bristled at the doctor's suggestion that her dad be put in hospice. “To me, hospice meant sending your parents someplace where they were supposed to be taken care of, but sometimes they weren't."
An expanding awareness
Such misconceptions or even a lack of awareness about hospice is common in the Hispanic community. The concept of hospice is unfamiliar in Latin America, where traditionally most families care for their loved ones at home.
In-home support from doctors, nurses, nurse's aides or social workers is rarely, if ever, available. But in the United States, hospice provides those services.
"Latinos often think they're giving up on their [loved one's] medical care, and that's not the case,” says Jon Radulovic, vice president of communications at the National Hospice and Palliative Care Organization in Alexandria, Virginia. “You're not abandoning your loved one.
"It's not giving up,” he says. “It's bringing a holistic, compassionate form of health care focused on dignity and the patient's wishes.”
A look at the numbers
A little more than half of all Medicare beneficiaries who died in 2017 used hospice services, up from almost 23 percent in 2000. The rate among Hispanic Medicare patients who died:
• 2000: 21.1 percent
• 2014: 41.4 percent
• 2015: 41.9 percent
• 2016: 42.9 percent
• 2017: 42.7 percent
About 2 percent of all hospice patients in 2017 were Latino, according to an October 2019 Government Accountability Office report. The overwhelming majority of beneficiaries were non-Hispanic white.