POMONA, Calif. — When you first meet 17-month-old Aaron Martinez, it’s not clear that something is catastrophically wrong.
What you see is a handsome little boy with smooth, glowing skin, an abundance of shiny brown hair, and a disarming smile. All you hear is cursing and whining that doesn’t immediately indicate anything is terribly wrong.
But her parents, Adriana Pinedo and Hector Martinez, know the truth all too well.
Although Adriana’s doctors and midwives had declared the pregnancy “perfect” for all nine months, Aaron was born with most of his brain cells dead, the result of two strokes and in utero. He was bleeding profusely.
Doctors aren’t sure what caused the anomalies, which left Aaron with virtually no cognitive function or physical movement. His thick hair hides a head that is very small in circumference for his age. He has epilepsy that causes multiple seizures each day, and his smile isn’t always what it seems. “It could be a smile; it could be a seizure,” her mother said.
Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, that there was no hope and that they should “let nature take its course.” They would learn months later that doctors did not expect the boy to live more than five days. It was on day 5 that his parents placed him in home hospice care, an arrangement that continued into his second year of life.
The family has weekly meetings with hospice nurses, therapists, social workers, and a pastor in a cramped one-bedroom apartment they rent from people who share the same lot on a quiet residential street in the Inland Empire City. But live in the main house.
An important criterion for hospice care, established by Medicare largely for the elderly but also applied to children, is diagnosis at six months of age or younger. Yet over the course of 17 months, Aaron’s medical team has repeatedly confirmed his eligibility for hospice.
Under a provision of the Affordable Care Act of 2010, children enrolled in Medicaid or the Children’s Health Insurance Program, unlike adults, are allowed to stay in the hospital while receiving treatment or end-of-life care. Commercial insurers are not required to cover this “concurrent care,” but many now do.
More than a decade since its inception, collaborative care has been credited with improving the quality of life for many critically ill children, reducing stress on families and, in some cases, maintaining hope for a cure. . But this arrangement can lead to a painful dilemma for parents like Adriana and Hector, who are torn between their intense commitment to their son and the futility of knowing that his condition merits hope for the future. do not have.
“We may lose one life, but if he lives like this we’ll gain three,” Adriana said. “There is no quality of life for him or for us.”
Now Aaron’s doctors say he may live for years. His body has not stopped growing since he was born. He is in the 96th percentile for height for his age, and his weight is about average.
Her parents have talked about “graduating” her from hospice. But he never stays stable for long, and he welcomes visits from his hospice team. Seizures, sometimes every 30 days, are a constant assault on his brain and, as he grows, medications must be changed or the diet readjusted to control them. He is at risk for gastrointestinal problems and potentially fatal fluid accumulation in the lungs.
Adriana, who works from home for a nonprofit public health organization, spends most of her time with Aaron, while Hector works as a landscaper. He chooses to live in the moment, he said, because otherwise his mind wanders to a future in which either “he can die — or he won’t, and I’m a 40-year-old.” I’ll change his diaper. Man.” Any of them, she said, “suck.”
While cancer is one of the major illnesses affecting children in the hospital, many others, like Aaron, have rare birth defects, severe neurological disorders, or unusual metabolic deficiencies.
“We have diseases that families tell us are one in 10 cases in the world,” said Dr. Glenn Komatsu, medical director of Torrance-based Trinity Kids Care, which has 70 locations in Aaron and Los Angeles. Provides home hospice services to more children. Orange Counties.
In the years leading up to the enactment of the ACA, child health advocates lobbied hard for coordinated care provision. Without the prospect of life-long care or the hope of a cure, many parents refuse to keep their seriously ill children in the hospital, thinking it is tantamount to giving up on them. This meant that the entire family missed out on supportive hospice, not only pain relief and comfort for the dying child, but emotional and spiritual care for parents and siblings under extreme stress.
TrinityKids Care, operated by the large national Catholic health system Providence, doesn’t just send nurses, social workers, and chaplains to homes. For eligible patients and their siblings, it also offers art and science projects, exercise classes, movies and music. During the pandemic, these activities have been done via Zoom, and volunteers deliver essential items to children’s homes.
The ability to get treatment is a major reason for prolonging their lives, as children in concurrent care are more likely than adults to survive beyond the six-month hospital assessment required.
“Palliative care, by its very intent, is very clearly going to extend their lives, and by extending their lives they no longer qualify for hospice if you have a six-month life expectancy,” Dr David said. use the criteria,” said Dr. David. Steinhorn is a pediatric intensive care physician in Virginia who has helped develop numerous children’s hospital programs across the United States.
Another factor is that children, even sick ones, are stronger than many older people.
“Sick children are often healthy, except for one organ.” Not flexible.”
Aaron Martinez’s vital organs are functioning except for his brain. “There’s been a few times when we’ve brought him in, and the nurse looks at the chart and sees him, and he can’t believe it’s the same baby,” said his father, Hector.
When babies pass six months of life expectancy, they must be recertified to stay in hospice. In many cases, Steinhorn said, he is willing to recertify his pediatric patients indefinitely.
Even with doctors advocating for them, it’s not always easy for children to go into hospice care. Most hospitals primarily care for adults and are reluctant to accept children.
“Hospitals will say, ‘We don’t have the capacity to treat children. Our nurses aren’t trained. It’s different. We just can’t do it,'” of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. Co-founder Lori Butterworth said. “The other reason is not wanting it, because it’s existentially destructive and sad and hard.”
Finances also play a role. Home hospice care is paid for at a per diem rate set by Medicare — a little more than $200 a day for the first two months, then about $161 — and is usually the same for children and adults. . Babies, especially those with rare conditions, often require more intensive and advanced care, so the per day doesn’t add up.
Steinhorn and others said that providing coordinated care has made pediatric patients more viable for hospice organizations. Under the ACA, many of the costs of certain drugs and medical services can be shifted to a patient’s primary insurance, making hospitals responsible for pain relief and comfort care.
Even so, the relatively small number of children who die each year from chronic illnesses hardly makes pediatric hospice an attractive line of business in an industry aspiring to growth, especially one in which private equity investors are interested. Active and looking for a great salary.
In California, only 21 of 1,336 hospitals reported having a specialized pediatric hospice program, and 59 said they served at least one patient under the age of 21, according to Hospice Analytics in Colorado Springs, Colorado. According to an analysis of 2020 state data by CEO Cordet Kesner. .
Hospice providers who cater to children often face a more fundamental challenge: Even with the possibility of hospice care, many parents still equate hospice with acceptance of death. That was initially the case for Los Angeles residents Matt and Reese Sonnen, whose daughter Layla was born with a seizure disorder that had no name: Her brain simply failed to develop in the womb. , and an MRI showed “fluid taking up space where the brain wasn’t,” her mother said.
When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalled. “The first thought that came to mind was, ‘This is just the end,’ but we realized she was nowhere near that, because she was strong, she was powerful. She was my little girl. She was going to get through it. was.”
About three months later, when Layla’s nervous system deteriorated, causing her to cry out in pain, her parents agreed to put her into hospice care with Trinity Kids Care. She died weeks later, shortly after her second birthday. She was in her mother’s arms, with Matt.
“Suddenly, Layla let out a huge gasp of air. The nurse looked at me and said, ‘That was her last breath.’ I was literally breathing his last breath,” Reese said. “I never wanted to breathe again, because now I felt like he was in my lungs. Don’t make me laugh, don’t make me breathe.”
Leila’s parents have no regrets about their decision to hospitalize her. “It was the right decision, and apparently we should have done it sooner,” Matt said. “She was in pain, and we had a blind one.”
Adriana Pinedo said she is “extremely grateful” to the hospice despite the suffering of Aaron’s condition. Sometimes a social worker stops by, she said, just to say hello and drop off a latte, a small gesture that can feel overwhelming. “They’ve been our lifeline,” he said.
Adriana talks about a friend with a healthy baby, also named Aaron, who is pregnant with her second child. “All the things that were on our list, they’re alive. And I love them so much,” Adriana said. “But it’s almost hard to see, because it’s like seeing something you haven’t got. It’s like Christmas Day, staring through the window of the neighbor’s house, and you’re sitting there in the cold.”
Yet she clearly seems torn between the dark remorse and unconditional love that parents feel for their children. At one point, Adriana placed herself in the middle and turned to her son, who was in Hector’s arms: “Yes, Papi, you’re so stinkin’ cute, and you’re still my dream come true.”
This story was prepared by KHN, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Along with policy analysis and polling, KHN is one of the three major operating programs of the KFF (Kaiser Family Foundation). KFF is a non-profit organization that provides information on health issues to the nation.
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