Poverty and the Tendency to Delay Seeking Treatment

Luis Hernandez, UC Berkeley graduate student

Luis Hernandez’ family did no planning around the end of life. Hernandez and his brother were raised by their single mother in the projects of Brooklyn, New York. “Death is not something we really talked about until it happened,” said Hernandez. His mother had been complaining about pain for a long time. He and his brother urged her to see a doctor. “My mom was always very scared of doctors and never wanting to go,” said Hernandez, “No matter how many times me and my brother told her ‘Go!’ She said ‘I’m scared they’ll find something.’ ”

But his mother waited too long. By the time she finally saw the doctor, she was diagnosed with stage four liver cancer. After emergency surgery, she got sicker and later died in the hospital. Because events moved so quickly, there was no time for Hernandez and his brother to talk with their mother and discuss hospice or alternatives to the aggressive medical interventions she received. “We’re not rich white people,” said Hernandez, “What time does she have when she has to work nine to six o’clock job? And even on weekends she’s working. Where do you find time to plan all of that out?”

Deportation Threats May Discourage End-of-Life Planning

In addition to poverty and lack of insurance, threats of deportation may cause undocumented immigrants to delay seeking medical help or plan for the end of life. Well-publicized cases of “hospital deportation” may further exacerbate fears among undocumented immigrants. “I’m concerned that the overall direction our country has taken, building the border wall, forced separation of families, will have serious consequences, in particular at the end of life,” said Dr. Smith, “It takes very little to prevent accessing services until it’s too late, until you’re really suffering, until you’re dying, until you’re hospitalized in the intensive care unit.”

Lack of Health Literacy as a Barrier

In traditional Latino and Asian cultures, many families often treat illnesses using home remedies and for that reason, tend to delay seeing doctors and put off end-of-life planning. Many Chinese people will use traditional Chinese medicine first before seeing a doctor. Many Latinos and Asians also believe in fatalism—the idea that events such as serious illness or death are pre-determined by destiny and for that reason, they tend to delay seeking treatment in the belief that medical intervention will not affect the outcome.

Misunderstandings Around Hospice

Hospice is a novel concept among many Asians and is often a misunderstood term among Latinos. Some Asians mistakenly believe that hospice is similar to nursing home care. Among Latinos, even medical professionals mistakenly translate “hospice” as “hospicio.” In Spanish, “hospicio” is a place for orphans, the destitute, or an asylum for the mentally ill. Compared to whites, fewer Latinos and Asians utilize hospice services and are more likely to die in the hospital.

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