Photo: Daniel Lugo III and his family are shown during a 2010 auto event before his cancer diagnosis. He asked that his casket be painted like his lowrider, "Paranoid." (Courtesy of Danielle Lugo)
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EAST LOS ANGELES--Daniel Lugo III was just 44-years-old when he was diagnosed in 2011 with stage-four stomach cancer. His doctors gave him a year or two to live and prescribed an aggressive regime of chemotherapy, which he would receive every three weeks for the next year.
But by 2014, the East Los Angeles resident’s cancer had spread to his brain and lungs. His weight loss was dramatic, and an esophageal stent implanted to improve his breathing and swallowing seemed to only make him weaker.
Then he had a seizure.
They Knew It Was Time
That’s when the Lugo family knew it was time for the husband and father of two to go into hospice, the next stage of his palliative care, a course of treatment that focuses on the medical, emotional and spiritual needs of people with a serious illness.
“I could tell that scared him,” said his wife Sylvia.
A recommendation for hospice can be scary and overwhelming, say end of life experts. They say lack of information has led many people to mistakenly think of hospice as a place where people just go to die, which leads to patients not receiving the end-of-life care and services they deserve.
The problem is especially acute among Latinos who, according to a 2012 California State Hospice Data Report, are less likely than other ethnic groups to discuss the end of life issues. The report found that only four percent of terminally ill Latinos over the age of 65 die while under hospice care. A 2011 California HealthCare Foundation study on attitudes and experiences related to death and dying,
reported that 42 percent of California residents surveyed said they had discussed end of life wishes with their loved ones, but only 31 percent of Latino surveyed had.
The Lugos are not typical of most Latinos. Daniel wanted to know everything and to make sure his family was prepared for whatever would come, including his death.
Sylvia said her husband’s doctor explained that hospice care is recommended when there is nothing more doctors can do medically to cure a patient. He said the focus of his care would turn to ensuring Lugo was comfortable, and that a team of nurses, doctors, social workers and health aides would be on call 24-hours a day to help manage his pain and other needs.
Families Often More in Denial
Tony Olivera, a hospital administrator at the Care For Life Hospice in Downey, Calif., said it’s often not the patients who are in denial about death, but family members and caregivers who are most resistant. “It’s hard for them to see it is nearing the end of life for their loved ones,” Olivera said.
“When you are born you are received with love and affection, don’t we deserve the same compassion, dignity and love when we depart,” Olivera said.
Experts say knowing what to expect and being prepared can help ease the pain for both patients and their loved ones.
In Lugo’s case, he made it a point to prepare for his death by setting up a living will, ensuring his pensions would help support his family after his passing, and buying his gravesite.
USC Gerontology Professor Susan Enguidanos says lack of “knowledge is a primary barrier as is misconceptions” when it comes to getting people to consider hospice.
“For Latinos, access is also hampered by citizenship and eligibility for Medicare or Medicaid.”
According to Olivera, most hospice patients have six months or less to live, but they could live longer or die sooner.
In Lugo’s case, the end came on April 17, 2014, just three weeks after entering hospice. He was 47.
Decisions Do Not End at Death
Enguidanos says families should openly discuss death and make preparations. The conversations should be repeated with a new diagnosis or illness, she added.
“It’s important to have these discussions and documents before someone has a serious illness so if someone has a sudden, unexpected death the family will known what type of end of life care preferences the person has,” she stressed.
Waiting to the very end, or trying to figure things out after a loved one has passed can be “too late,” cautions Olivera.
Before he died, Lugo made it clear that he wanted his casket painted metallic purple with hues of red, just like his lowrider, named “Paranoid.”
He made sure his grave was close to his grandparents, who had also passed away from cancer.
He even knew whom he wanted as his pallbearers, says his widow.
Sylvia said she and her daughters spent the more than two years after her husband was diagnosed with cancer talking openly and honestly about his final wishes, which has made it easier for them to move on with their own lives.
“He made us tough,” said Danielle. “He would not want us at home depressed, he wanted us to continue working hard.”
“We were blessed with time and had a chance to say goodbye, to say I love you,” said Sylvia about her high school sweetheart and husband of 27 years.
Sylvia said her husband faced death head on and was not afraid to ask the tough questions, and advises anyone who finds themselves in the same situation to do the same.
“I would say just be brave and ask how much time is left, ask more questions. It makes it easier.”
Nancy Martinez wrote this article for EGP News in Los Angeles as part of a New America Media Journalism Fellowship, sponsored by the California Health Care Foundation.
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