Easing a Child’s Death

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.

“There are turf battles over this,” says Armstrong-Dailey, “where hospices blame the hospitals for not referring patients, and the hospitals say the hospices aren’t taking them. And what’s important, of course, is simply that the kids get care.”

Federal hospice regulations also specify that patients stop trying treatments that prolong life--even though, more and more, doctors use treatments such as chemotherapy and transfusions to relieve pain, not cure disease.

“Kids simply don’t fit into this definition of hospice, which was designed for adults,” says pediatric nurse Karen Doherty, the patient care coordinator at Comfort for Kids, a branch of Hospice and Palliative Care of Contra Costa, in Concord, Calif. “It’s just very different from adult care.”

In fact, it is an alternate universe. While adult end-of-life care is often an exercise in looking back over a long life, kids are focused on getting the most out of a short one. They don’t want to “die well,” as adult hospice brochures have it; they just want to be kids.

Every kids program has its stories. The 8-year-old boy who gets a blood transfusion just so he can play soccer for the day. The 11-year-old girl who has chemotherapy so she can finish her last week of school. And the teenagers, barely alive, who are determined to make love one more time (maybe the only time) with their girlfriend or boyfriend.

“Those are always awkward,” says Sumner. “We have to turn to the parent, who has been looking after the child day and night, and say, “Uh, could you leave the house for a couple of hours.” It’s a cliche to say it, but these kids are really living for the day.”

Siblings do too, when they’re involved, and they present perhaps the greatest challenge of all to counselors. In some special cases, the hospice option can spare a brother or sister from feeling the full weight of death.

Helping Siblings Cope With Death

Last November, Ken and Dulcey Stevens learned that their newborn daughter, Amanda Grace, had a severe brain defect that would kill her shortly after birth. They feared for their son, 7-year-old Trevor, who had been anticipating the new baby.

“We decided not to bring her home,” says Dulcey, 25. Ken, 39, a sales manager at a tobacco company, says, “We didn’t want to have a room in the house where we’d always say, ‘This is where Amanda died.’ ” Amanda spent her last nine days on earth at San Diego Hospice. Trevor visited, said his goodbyes, and so far has shown little evidence of distress. The family keeps an empty crib in Amanda’s honor, with pictures, poems and toys she would have played with.

In many cases, though, siblings bond with their dying brother or sister, don’t quite grasp what their death means, and even suspect they have the power to reverse it. Brittani Stuart is a good example.

Even though she seemed to handle Hunter’s death at the time, only gradually did she come to understand its finality. Once a few months back, she stuck her head out of the car, at a gas station near San Diego, and yelled, “Hey, God, you give my baby back! You! Jesus! You give him back now!”

“She was doing that a lot,” says Melissa. “She’d be screaming in the back seat or screaming in her room. It was bad for a couple of months.”

Brittani began to settle down after “play therapy” sessions with one of the hospice’s bereavement counselors. While playing with toys, or drawing, or coloring, Brittani would talk to the counselor about her brother. It was then that she first gave Hunter’s death a name and talked about what it meant--that he wasn’t coming back.

“The important thing with siblings,” says Jennifer Smerican, one of the hospice social workers who helped the Stuarts, “is to make sure they understand that this is not something they can catch, that they aren’t going to die. And that this didn’t happen because of something they did. Many kids blame themselves, and they don’t know what to do about it.”

What to do with a dying child? The physical reality is so much more terrible than the logical abstraction of its possibility. And ultimately that is what the small fraternity of kids hospice workers is hoping to establish: guidelines that tell parents what to do from the moment of diagnosis until the very end.

“Sometimes,” says Dori Lamphere, a pediatric resident who’s assisting at San Diego Hospice, “parents simply need someone to tell them that it’s OK to refuse the next surgery, it’s OK to refuse the next treatments, because they’re not going to extend the child’s life.”

It’s that kind of advice, hospice providers say, that in the end allows a family to preserve a meaningful living memory of the departed child. One of the Stuarts’ favorite pictures of Hunter is the last one taken.

He is sitting on his sister’s lap, moments from the end, the two children in pajamas, practically floating on the cushions of a large, dark couch. Their heads are together, and Hunter has one tiny elbow propped on Brittani’s collar, his face turned up toward hers, with one eye held open, barely, as if it’s all he can do.

“That there,” Brittani says, “is my brother!”

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Where to Find Help

Hospice services, designed to improve the quality of life for dying patients, offer pain control, physical comfort and emotional support. Whether provided at home or at inpatient facilities, such care often helps the families as well, especially when the patient is a child. These organizations have further information.

San Diego Hospice, 4311 3rd Ave., San Diego, CA 92103; (619) 688-1600; https://www.sdhospice.com.

Comfort for Kids, 2051 Harrison St., Concord, CA 94520; (800) 400-3130; https://hospicecc.org.

California Hospice and Palliative Care Assn., P.O. Box 160087, Sacramento, CA 95816; (916) 441-3770; https://www.calhospice.org.

Children’s Hospice International, 2202 Mt. Vernon Ave., Suite 3C, Alexandria, VA 22301; (800) 24-CHILD; https://www.chionline.org.

National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 300, Alexandria, VA 22314; (703) 243-5900; https://www.nho.org.

Hospice Foundation of America, 2001 S St. NW, Suite 300, Washington, DC 20009; (800) 854-3402; https://www.hospicefoundation.org.