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Easing a Child's Death

Hospices for the young help kids get the most out of their short lives, benefiting their families as well. Though such programs are rare, medical experts and activists are pushing for more of them.

August 21, 2000|BENEDICT CAREY | TIMES HEALTH WRITER

Hunter Stuart died at 11 a.m. on Dec. 5, 1999, in a room at San Diego Hospice, a care facility for the dying.

His mother, Melissa, 24, sobbed, as she knew she would. His father, Sean, 30, held himself steady, as he had for most of his son's troubled, 5-month life. Both had prepared with the aid of hospice counselors who know what dying looks like and what it requires of the living.

It was 3-year-old Brittani, Hunter's sister, who was the unknown, the X factor, the one whose reaction even hospice counselors could not anticipate. She was playing outside the room, on a swing set, when she heard someone say, "It's time, Brit. Hunter's saying goodbye."

The little girl came in and held the boy. She told him that she loved him and would miss him. Then her thoughts turned to a pet goldfish, recently deceased, and she said, "And I won't let them flush you down like my fish!"

And for the first time in a while, the Stuarts had a laugh. That their daughter somehow sensed the ending of a life and even soothed its departure was a tribute to the family--and to the hospice.

Angelic little Hunter hadn't provided many laughs; he was in and out of the hospital for heart problems, his parents had to feed him through a tube and finally he succumbed to brain atrophy from an infection that occurred well before birth.

But he certainly wasn't swept through the system, as many kids are, dying behind a curtain in an intensive care unit, in the octopus embrace of life-support machines.

For if there's any good fortune in the Stuarts' story, it is that they learned that their boy qualified for hospice, a specialized system of care and pain control for people with less than six months to live. He could have died at home, if the family had wished, or at San Diego Hospice's inpatient center, a sprawling campus with large rooms where, in the end, the Stuarts stayed.

Such support is difficult enough to arrange for dying adults, whose care is at least partly reimbursed by Medicare, the federal health program, at some 2,500 hospice facilities throughout the country.

But families with dying kids are largely on their own. San Diego Hospice is one of only two dedicated, full-service kids' programs in the state, and the only one providing rooms for young patients. Nationwide, just one in 10 hospices regularly admit children, a mere handful keeping nurses, counselors and doctors exclusively devoted to their care. And it's mostly charity work. Public and private insurers pay about $100 a day, if that, which rarely covers expenses.

The result: Only about 5,000 of the some 53,000 kids who die each year of life-shortening diseases get hospice care. Very few of the families who qualify even know it exists.

That's why there are several efforts underway to close the gap. Earlier this month, the American Academy of Pediatrics released guidelines for end-of-life care and called on legislators to broaden access to pain treatment and other hospice services.

Sole Facility in L.A. County to Open

Trinitycare Hospice of Torrance will set up Los Angeles County's only dedicated children's program this fall, with $300,000 in foundation money. And this year, for the first time, Congress is spending money to develop a model children's hospice program--a standard of care, in effect, designed specifically for kids with life-threatening conditions.

"One of the biggest problems has been that people just don't want to admit that a child is dying," says Ann Armstrong-Dailey, founder and director of the nonprofit Children's Hospice International, which will administer the $1-million congressional grant. "Parents don't want to give up on their kids, ever. And pediatricians go into medicine to help cure children, not to let them go."

Yet when it comes to kids, says Armstrong-Dailey, hospice is not a euphemism for a passive acceptance of death. The afflictions that cut us down at the beginning of life--muscular dystrophy, leukemia, brain and heart defects among them--are less predictable than those, mostly cancer, that strike at the end. At San Diego Hospice, for example, which cares for 30 to 80 children a year, about one-fourth "graduate" from hospice to long-term care, because their prognoses improve.

"They might come back to us a couple of years later," says Liz Sumner, director of San Diego Hospice's Children's Program, which supports a staff of two nurses and two social workers mostly through donations and foundation grants. "But entering a child in hospice care does not mean you are giving up."

That's a crucial point, because hospice regulations currently require a child's doctor to sign documents declaring that the patient has less than six months to live. If pediatricians are uncertain about that prognosis, they are reluctant to refer patients. And when they refer them without the six-month prognosis, some hospices won't take them. Waiting lists are almost always full.

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