Knowing Is Always Better: Why Latinos Need to Talk About Death
By Nancy Martinez
Part 1. Read Part 2.
LOS ANGELES–When Daniel Lugo III was diagnosed with stage four stomach cancer in December 2011, his first question to his doctor was, “How much time do I have left?”
The East Los Angeles resident–at the time only age 44–was unprepared for his doctor’s hesitant answer: “One to two years.”
From that point on, Lugo told himself he only had one year to live: One year to figure out how to make sure his wife and two daughters were taken care of when he was no longer around.
Lugo’s wife Sylvia, 46, says her husband’s doctor was always straightforward about his end-of-life care. He recommended they immediately begin palliative care. This treatment addresses the medical, emotional and spiritual needs of people with very serious illness and the impact on the patient’s family. And he talked to them about hospice, part of palliative care used in the last six months of life, which could become necessary if her husband’s aggressive cancer treatment was unsuccessful.
For the next year, Lugo would receive chemotherapy every three weeks.
“He couldn’t get any breaks [from the treatment],” his wife explained, because … “the tumor kept growing and getting out of control.”
Hearing words like “cancer” and “end of life” were very hard to take, said the woman who said she met her high school sweetheart when she was a sophomore and he was a junior at Schurr High School in Montebello, Calif.
“We were a completely odd couple,” she recalled fondly. “He was hard rock and I was into disco.”
Over the years, the couple would share other passions, including his love for his “Lifestyle” car club, and showing his lowriders, named “Stripteeze” and “Paranoid,” at car shows, something they often did as a family.
For Lugo, it was important that his cancer diagnosis not be the end of his life. He still had things he wanted, needed, to do for his family.
“Dad wanted to do everything while he still could,” said his daughter, Danielle, 23.
That desire is not unusual, however, following through is, especially among Latinos.
Not Being a “Burden”
According to a 2011 study on the attitudes and experiences on death and dying, by the California Health Care Foundation (CHCF), some of the most important factors patients consider during end-of-life treatment include “making sure family is not burdened financially” and “making sure family is not burdened by tough decisions” about their care.
For Latinos, the latter statement was found highly important, according to the study.
But while eight out of 10 Californians said it’s extremely important that their medical care wishes are followed, only 23 percent actually put their wishes in writing, the study found. Even more shocking, only nine percent of those with their wishes documented were Latinos.
Lugo was one of those rare Latinos who did follow through. He quickly set up a living will, started inquiring about his pensions and even bought his gravesite.
He insisted his wife and daughters learn how to fix a flat tire, recalls Danielle. “He would say, ‘What happens if I die?’” but he’d never refer to the cancer as the cause of his death.
“I could be hit by a car,” he would say. “When it’s your time to go, it’s your time to go.”
Danielle said her Dad went as far as leaving her a hand-written note in her glove compartment telling her when to get an oil change and to rotate her tires.
That’s not to say he prepared Sylvia and the girls for everything they would need to know without a man in the house: “I can’t make it easy for your new boyfriend, he needs to do his work,” Sylvia said her husband would tease.
“He wasn’t afraid to die, he just wanted to be prepared,” she said.
Lugo made sure to fill out his advance health care directive and the separate form called a POLST, or physician orders for life sustaining treatment. The advance directive details a person’s wishes, while the shorter POLST document is signed by the doctor and instructs health care providers to follows the wishes of a patient when they get very sick and close to death.
Latinos Who Plan for the End
The POLST form enables people to indicate whether they want to be kept on artificially administered nutrition, if they want to die a natural death without resuscitation attempts or a choice in-between.
“Studies have shown that individuals with a POLST are more likely to have their wishes followed at end of life,” said gerontologist Susan Enguidanos of the University of Southern California (USC).
Only 31 percent of Latinos discuss their end-of-life wishes with a loved one, compared to 54 percent of white patients, according to the CHCF survey.
“Studies have found that acculturation and education are associated with having an advanced directive among Latinos,” said the USC professor.
Lugo, a third-generation Latino, was one of those who did, Sylvia said.
He “always knew what he wanted” and always “wanted things done his way,” she said. Planning for his death was no exception.
Nancy Martinez wrote this article for EGP newspapers as part of a New America Media Journalism Fellowship, sponsored by the California HealthCare Foundation.