POMONA, Calif. — When you first meet 17-month-old Aaron Martinez, it’s not obvious that something is catastrophically wrong.
All you see is a cute little boy with smooth, glowing skin, lots of shiny brown hair, and a disarming smile. All you hear are coos and cries that don’t immediately signal anything terribly awkward.
But her parents, Adriana Pinedo and Hector Martinez, know the truth painfully well.
Although Adriana’s doctors and midwives described the pregnancy as “perfect” for nine months, Aaron was born with most of his brain cells dead, the result of two strokes and a massive hemorrhage while still in utero.
Doctors aren’t sure what caused Aaron to develop such anomalies, with virtually no cognitive function or physical mobility. Her voluminous hair hides a head whose circumference is too small for her age. He has epilepsy that triggers multiple seizures per day and his smile isn’t always what it seems. “It could be a smile; it could be a seizure,” said his mother.
Shortly after Aaron was born, doctors told Adriana, 34, and Hector, 35, there was no hope and 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. On day 5 his parents placed him in home hospice care, an arrangement that continued into his second year of life.
The family receives weekly visits from hospice nurses, therapists, social workers and a chaplain in their cramped one-bedroom apartment, from people living in the same main house on a quiet residential street in this inner-city city.
One of the main criteria for hospice care, established by Medicare primarily for the elderly but also applied to children, is a diagnosis of six months or less to live. Yet over the course of 17 months, Aaron’s medical team repeatedly recertified his hospice eligibility.
Under a provision of the 2010 Affordable Care Act, children enrolled in Medicaid or the Children’s Health Insurance Program are allowed to remain in hospice, unlike adults, while continuing to receive curative or life-extending care. Commercial insurers are not required to cover this “concurrent care,” but many now do.
More than a decade since its inception, contemporary care has been widely credited with improving the quality of life for many unwell children, reducing stress on families and, in some cases, sustaining hope for a cure. But this arrangement can contribute to a painful dilemma for parents like Adriana and Hector, who are torn between their intense commitment to their son and the futility of his condition leaving him with no future to look forward to.
“We may lose one life, but if he continues to live like this, we’ll lose three,” Adriana said. “Life has no value for him or us.”
Aaron’s doctors now say he likely has years to live. His body has not stopped growing since birth. He is in the 96th percentile for height for his age and his weight is about average.
His parents told him to “graduate” from hospice. But he never stays still for long, and they welcome a visit from their hospice team. The seizures, sometimes 30 a day, are a constant assault on her brain and, as she progresses, medications to control them have to be changed or doses recalibrated. He is at constant risk of gastrointestinal problems and potentially fatal fluid accumulation in his 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 chose to live in the moment, he said, because otherwise his mind wandered to a future where either “he might die — or he wouldn’t, and I’d be changing a 40-year-old man’s diaper.” Any of those, she said, “are going to suck.”
While cancer is a major disease afflicting children in hospice, many more, like Aaron, have rare birth defects, severe neurological impairments, or abnormal 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 TrinityKids Care, which provides home hospice services to Aaron and Los Angeles and more than 70 other children. Orange County.
In the years leading up to the ACA’s implementation, child health advocates lobbied hard for concurrent care provisions. Without the prospect of life-extending care or hope for a cure, many parents refused to place their sick children in hospice, thinking it would be tantamount to giving them up. This means an entire family deprived of hospice support can provide not only pain relief and comfort for a 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 the home. For patients able to participate, and their siblings, it offers art and science projects, exercise classes, movies and music. During the pandemic, these activities have been conducted via Zoom and volunteers bring essential supplies to children’s homes.
The ability to receive treatment that prolongs their lives is a major reason why children in concurrent care are more likely than adults to survive six months-to-live from diagnosis.
“Contemporary care, by its very intent, is very clearly going to extend their lives, and by extending their lives they’re no longer going to be hospice-eligible if you use the six-month life expectancy criteria,” said Dr. David Steinhorn, a pediatrician in Virginia. Intensive care physician, who has helped develop numerous children’s hospice programs across the United States
Another thing is that children, even sick ones, are stronger than many older people.
“Sick children are often healthy, except for a limb,” said Dr. Debra Lotstein, chief of the division of comfort and palliative care at Children’s Hospital Los Angeles. “They may have cancer in their body, but their heart is good and their lungs are good, a 90-year-old who is not as resilient at baseline.”
All of Aaron Martinez’s vital organs, except his brain, seem to be working. “There’s been times when we bring him in, and the nurse looks at the chart and sees him, and he can’t believe it’s that baby,” said his father, Hector.
When babies reach six months of age, they must be recertified to stay in hospice. In many cases, Steinhorn says, he is willing to re-certify his pediatric patients indefinitely.
Even with doctors recommending it for them, it’s not always easy for children to go into hospice care. Most hospices care primarily for adults and are reluctant to take children.
“Hospice will say, ‘We don’t have the capacity to treat children. Our nurses are not trained. It’s different. We can’t do it,” said Lori Butterworth, co-founder of the Children’s Hospice and Palliative Care Coalition of California in Watsonville. “The other reason is not wanting, because it’s existentially destructive and sad and difficult.”
Money also plays a role. Home hospice care is paid at a per diem rate set by Medicare — a little more than $200 per day for the first two months, about $161 after that — and is generally the same for children and adults. Children, especially those with rare conditions, often require more intensive and innovative care, so each day is not as extended.
Concurrent care provision has made it more viable for hospice organizations to accept pediatric patients, Steinhorn and others say. Under the ACA, many costs for certain drugs and medical services can be shifted to a patient’s primary insurance, making hospices 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 where private equity investors are active and looking for a big payday.
In California, 21 of 1,336 hospices have a specialized pediatric hospice program and 59 said they served at least one patient under the age of 21, according to an analysis of 2020 state data by Cordot Casner, CEO of Hospice Analytics in Colorado Springs, Colorado. .
Hospice providers who care for children often face a more fundamental challenge: Even with the possibility of concurrent care, many parents still equate hospice with accepting 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, ” said his mother.
When Layla’s team first mentioned hospice, “I was in the car on my phone, and I almost crashed the car,” Reese recalls. “The first thought that came to mind was, ‘It’s just the end,’ but we felt he was nowhere near that, because he was strong, he was mighty. She was my little girl. He was going to go through with it.”
After about three months, when Laila’s nervous system deteriorated, causing her to cry out in pain, her parents agreed to admit her to hospice at TrinityKids Care. He died a few weeks later, not long after his 2nd birthday. She was in her mother’s arms, Matt close.
“Suddenly, Layla let out a big gasp. The nurse looked at me and said, ‘That was his last breath.’ I was literally breathing his last breath,” Reese recounted. “I never wanted to breathe again, because now I felt like I was in my lungs. Don’t make me laugh, don’t make me breathe.”
Layla’s parents have no regrets about their decision to put her in hospice. “It was absolutely the right decision, and in hindsight we should have done it sooner,” Matt said. “He was suffering, and we were blind.”
Adriana Pinedo said she was “infinitely grateful” for the hospice despite the heartache of Aaron’s condition. Sometimes the social worker will stop by, she said, just to say hello and drop off a latte, a small gesture that can feel very uplifting. “They have been our lifeline,” he said.
Adriana tells of a friend of hers who has a healthy baby, also named Aaron, who is pregnant with her second child. “All the things that were on our list, they are living. And I love them so much,” Adriana said. “But it’s almost hard to see, because it’s like seeing things you didn’t get. It’s like Christmas, looking through the neighbor’s window, and you’re sitting there in the cold.”
Yet he seems clearly torn between the dark remorse and unconditional love parents feel for their children. At one point, Adriana stops herself midway and turns to her son in Hector’s arms: “Yes, Papi, you are so stinking beautiful, and you are still my dream come true.”
This story was produced by KHN, which publishes California Healthline, the 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 main operating programs of the KFF (Kaiser Family Foundation). KFF is a non-profit organization that provides health information to the nation.
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