The end of life is not easy for most Americans nearing death. The good news is that up to 90 percent of pain and suffering can be controlled. But the bad news is that over half of all dying Americans experience unwanted pain and suffering during their final days.
And the numbers are even greater for people of color. African-Americans, Asians, and Latinos have less access to the pain medication and comfort care that hospice can provide at the end of life compared to whites.
Asians, Latinos, and other ethnic minorities whose second language is English face additional challenges. Language barriers and cultural traditions can inhibit awareness of and discussions about end-of-life options and are often compounded by poverty and lack of education.
In many traditional Latino and Asian cultures, speaking openly about death is taboo, especially when a loved one is seriously ill. Latinos and Asians are less likely than whites to discuss their end-of-life preferences or engage in advance care planning (end-of-life conversations with family or health providers).
Patients who engage in advance care planning are less likely to die in the hospital or to receive futile intensive care. Family members have fewer concerns and experience less emotional trauma if they have the opportunity to talk about their loved one’s wishes.
Family plays an important role in the end-of-life decision-making process in both Latino and Asian cultures. Among Latino families, a male member, usually the oldest son or uncle, is responsible for making decisions on behalf of the dying family member.
The expectation is that if the elected caregiver respects and loves the dying patient, they will insist the hospital “do everything” to keep the patient alive—this can mean another round of chemotherapy or multiple emergency room visits.
The children of a Chinese parent will often advocate for aggressive, life-prolonging treatment out of a sense of filial duty.
“In our own family, we don’t talk about death definitively,” said Julie Thai about her family in Vietnam. In the case of Thai’s 85-year-old grandfather, he had no end-of-life discussions with her aunt, who was in charge of decision-making.
Thai and her mother were close to her grandfather, who told them on the telephone he wanted a natural death and did not want to be resuscitated.
But when he was taken to the hospital for the last time, her aunt asked the hospital to do everything to keep him alive. “He was very upset, he was crying, he was pulling the IVs out, he was spitting up the food,” said Thai. “He just didn’t want anything they were giving him.”
Despite the attempts to save his life, her grandfather went into cardiac arrest, and he died 24 hours later. “He was caused more pain by them imposing these heroic measures on him, as opposed to just letting him go, which is what he would have wanted,” said Thai.
Trained medical professionals and social workers can make a critical difference in reaching out to ethnic patients and their families and helping them prepare for the end of life. Professional translators are essential to assist medical staff and families and help them overcome language barriers and facilitate conversations with patients.
On Lok Senior Health Services provides low-income, frail seniors with comprehensive services that allow them to stay at home. These services include home visits and clinical care, meal deliveries, transportation, and adult day care. The majority of On Lok’s seniors are low-income Chinese and Latinos living in three Bay Area counties.
Dr. Alana Shpal, a primary care physician at On Lok, says conversing with her Spanish-speaking patients can often be challenging, especially if cultural norms prohibit patient autonomy and discussing death. “Even though it’s taboo, I usually say ‘I’m your doctor and this is my job and I need to know what you want or what you don’t want’,” said Shpal, “It’ll put their family in a harder place later on and that often helps because they see their family struggling to make a decision and they don’t want to be a burden.”
On Lok currently serves over 1,500 frail elders and at the end of life, provides them with comfort care similar to hospice. On Lok’s innovative program has now been replicated in 30 states.
This story is part of a series examining racial disparities in accessing hospice and comfort care at the end of life. JoAnn Mar’s report was produced as a project for the USC Annenberg Center for Health Journalism’s 2018 California Fellowship