Whenever Luz Salazar Garcia dealt with doctors, she dug in her heels. After the Hacienda Heights homemaker and former Mexican government worker was diagnosed with diabetes in the 1980s, she refused to follow her physician’s advice and take insulin to control her blood sugar. She was still angry over the death of her father, a train conductor in Mexico, who had died in 1958 of an insulin overdose prescribed by a railroad doctor. She swore then that she would never take that drug. One of her physicians told her if she wouldn’t take insulin, she could no longer be his patient. Garcia got a different doctor.
Finally, in 2003, she reconsidered insulin in a last-ditch bid to restore the sight that was being robbed by advanced diabetes, but it was too late. Her sight had failed, her blood pressure was too high, her legs were suffering from neuropathy, and she suffered internal bleeding in her eye from advanced glaucoma. Garcia’s world closed in around her. She was afraid to be left alone and depended on others for everything. Her husband and her only child became round-the-clock caregivers.
Two years later, Garcia lay in a Whittier hospital, her 78-year-old body frail and her weight below 100 pounds. The chart told a grim tale: breast cancer, congestive heart failure, blindness, kidney failure, neuropathy, hypertension, glaucoma, depression. It looked like checkmate. Garcia told her family she was ready to give up the fight. A priest was summoned to the bedside to administer the last rites. Her soul was prepared for death.
But Garcia did not get her wish. Like many other families, her loved ones were caught in the gears of a health care system that seems conditioned to view death as optional. Because of the way physicians communicate about end-of-life issues, many families are drawn into a maelstrom of emotional, divisive decisions, the consequences of which can last long after the funeral.
When Doctors Disagree
Garcia’s devoted daughter, Luz Solis, 52, ruefully remembers how different physicians offered contradictory advice to her and her father, Emilio Garcia. “One doctor told me: ‘If your mom was my mom, I would let her go,'” Solis said. But the attending physician gave Garcia’s husband a different prescription — immediate kidney dialysis. “Don’t you love your wife?” the doctor badgered him. “Don’t you know this is something she needs? You have to have this done to her. There is no other way.” Despite emotional protests from Solis, Emilio Garcia authorized bedside dialysis.
Solis argued with him. How could he square his decision to continue the treatments with her mother’s clear wish to die in peace? “He was unwilling to listen. My dad wanted my mom to live, whatever it took,” she said. “We never had a quarrel like this one. My dad was the head authority of the family. If I had said no, it wouldn’t matter. My dad signed off on everything because my mom was blind. I was the interpreter, but he was the decisionmaker.”
The decision was reached to go ahead with dialysis, but no one informed the patient. Luz Garcia learned about it as a nurse began preparing to insert an intravenous line in her neck. Her arms were already being used for other IVs.
She was enraged. She resisted, shouting in Spanish, “I don’t want this — why are you doing this to me?” Solis’s father and her husband walked away from the commotion, but Solis sat outside the room, sobbing, as her mother’s screams echoed down the hall. Finally the room grew quiet, the dialysis commenced, and Luz Garcia was asleep. But around midnight her breathing became labored, and nurses put a mask over her nose and mouth to get more oxygen into her bloodstream. Luz Garcia repeatedly removed it.
“She would pull it away and say, ‘Let me speak,'” Solis said. “Then she said, ‘Mamá,’ and those were her last words. After that the nurse said she was in a coma.” Before dawn Luz Garcia was gone. “I carry the remorse, and I wish my mom would have not died this way. It was very emotional. It was horrible what we three went through.”
A Family Empowered
Solis, a program management specialist at California State University, Los Angeles, now finds herself in a movement fighting for families to be able to choose ways of dying that take into account patients’ unique needs and desires about what they want out of their last days. This planning allow families to avoid the dissension that can arise when a patient is unable to express their wishes, which leaves relatives to their own devices in making decisions for the patient.
Solis is trying to empower everyone in her family to express their wishes for how they approach the end of their lives — and it has had an effect. In the last year, two relatives have died in ways that Luz Garcia might have preferred for herself. Solis’s mother-in-law had worsening congestive heart failure. Her doctor offered a surgical procedure, but she decided against it, opting to die peacefully at home. It was a similar story with Solis’s aunt — Luz Garcia’s last surviving sibling — whose lung cancer had advanced. She also opted to die at home, not in a hospital bed.
“When my mother was alive, my aunt would come to our house every day,” Solis said. “We would talk about my mother’s condition and how she suffered. It helped her decide how she wanted it for herself.”
Solis and her husband have already visited the family attorney to sign directive orders that make clear their own wishes for end-of-life interventions. “My husband and I don’t want tubes and things like that,” she said.
Mapping the Last Mile
In 2014, Harvard surgeon and writer Atul Gawande published the best-seller Being Mortal about modern medicine and the larger culture’s difficulty with accepting death. In February 2015, a FRONTLINE documentary also called “Being Mortal” aired on public television stations nationwide. The program shares the close-up experiences of several patients and families at the end of life, including his own. To help continue the conversation sparked by the film and book, the California Health Care Foundation (CHCF) and the John and Wauna Harman Foundation teamed up to promote dozens of community screenings of “Being Mortal” across California, and to assess their impact.
On September 9, Solis participated in a community screening event at CSULA’s College of Health and Human Services. At the end of the movie, Solis moderated one of many small discussion groups intended to educate participants about choices they might make if they had a serious illness and to encourage them to identify and communicate their wishes to those who matter. As part of this process, CHCF and Harman measured the knowledge and attitudes of thousands of participants at the screenings. As a result of the success of the screening project in California, the Harman Foundation plans to show the film in communities nationwide.
The full report on the CHCF-Harman project, scheduled for release in January, will look at the challenges and lessons learned from screening the film in diverse California communities and will include additional stories from participants.
“With my loved ones who have passed away recently, they have passed away peacefully,” Solis said. “They saw with my mom how that was. I’m hoping they can see how their life could be changed just by accepting death. With my dad, I think he’s just very afraid to die. I love my father very much, and I know he loved my mom. He wanted to have my mom live whatever the cost.”
Emilio Garcia, 89, has told Solis that he regrets following the doctor’s advice to start dialysis for his wife, but he hasn’t changed his mind about his own end-of-life plans. He wants doctors to do everything technologically possible to prolong his life. That wouldn’t be Solis’s choice, but she says she is determined to respect his wishes.
Avram Goldstein is a senior engagement officer at CHCF, where he is the editor of the CHCF blog and supports the work of CHCF’s State Health Policy Office. Av came to the foundation after serving for five years as communications and research director for Health Care for America Now, a national grassroots coalition in Washington, DC, that spent $60 million in the successful campaign to enact and implement the Affordable Care Act. His interest in health care and health policy arose during his 30-plus years with major news organizations. He wrote influential stories about physicians, hospitals, insurance companies, government health programs, and public health for the Washington Post, Bloomberg News, the Detroit News, and the Miami Herald. He held editing roles at some of those papers. Av also served as the top editor at a newspaper for South Florida physicians and later at a daily newspaper for California lawyers. Av received a bachelor’s degree in finance and insurance at the University of Miami.