Comforting kids, families
By DEBORAH O'NEIL
© St. Petersburg Times, published May 6, 2001
LARGO -- Someone has left two stuffed animals -- a fuzzy pink piglet and a polka-dotted cow -- at one end of the conference table.
At the other end, a doctor, nurses and counselors share updates on their patients. There is talk of bleeding and tumors, pain and deformity, end stage disease.
The playthings suggest the oh-so-adult suffering being discussed in this meeting at the Hospice of the Florida Suncoast is not about adults at all. Their patients are infants and toddlers, middle schoolers and teenagers, all with diseases, medical conditions or physical traumas expected to end their life before adulthood.
Children's Hospice offers a panorama of services: counseling, medical expertise, respite care, home health care, sibling support. Yet those heading the specialized children's program say it remains largely unknown and misunderstood.
In a county with more than 175,000 children under age 18, Children's Hospice has only 10 kids using its medical services. None is a cancer patient. The staff pediatrician estimates that double the number of children could be benefitting from the medical care.
Another 40 to 50 families take advantage of counseling and bereavement services offered through the hospice Child and Family Support program.
"There are a lot of services here but no one knows about them," said Dr. Bob Morelli, a longtime Clearwater pediatrician who joined the hospice program in December as its first children's doctor.
The staff is working on extending its outreach, creating literature that outlines programs and making presentations in local medical offices. In doing so, staff members want to communicate to the medical community and families that Children's Hospice is not a death sentence.
Indeed, the staff is contemplating a name change. Maybe Comfort Care for Children, rather than hospice.
"It's a perception," said program manager Stacy Orloff. "It's what the name stands for."
In truth, children can spend many years in hospice care. The average is 23 months. Many will shift from one service to another, depending on their needs. Occasionally, a child recovers. Parents do not have to abandon treatment to use the services. The program is structured to be flexible.
Services are paid for in a variety of ways -- including private insurance or Medicaid -- but no one is turned away because of inability to pay.
The families involved in Children's Hospice say they have known the benefits all along.
"I don't know why more people don't look into the services there," said Jen Mutnansky, whose son Ryan was born with multiple birth defects and receives nursing and respite care from the hospice. "For some reason, saying (the children) are that ill is probably difficult."
For Jen and her husband, Richard Mutnansky, the hospice allows them to share their time and attention with their other three children. The couple can bring 9-year-old Cassidy, 4-year-old Austin and baby Jessica to Busch Gardens for a day knowing that Ryan is being well cared for.
The Mutnansky's Seminole home is abuzz with children's laughter, toys and chatter as a hospice nurse checks Ryan's vital signs. Ryan is stable, but his health is deteriorating. Mrs Mutnansky doesn't dwell on it.
"I don't focus on Ryan's illness, I just don't," Mrs. Mutnansky said. "Maybe I'm in denial, but it works for me. The main thing for us is to proceed with our lives as normally as possible."
For the de Ibern family of Palm Harbor, hospice care plays a different role.
"Hospice has been absolutely, positively tremendous," said Carole de Ibern, whose son Preston nearly drowned in 1995 and suffered serious brain damage that has left him unable to walk, speak or feed himself.
Preston is now 10, and his health is a roller coaster of seizures, pneumonia and respiratory infections. The hospice program provides him with medical equipment, prescriptions and nursing visits at home. The equipment is mounted in Preston's bedroom, a little boy's delight with A Bug's Life comforter and curtains, a teddy bear collection and shelves stuffed with children's movies.
"They told me he'd never have any quality of life," de Ibern says. "Well, he does. He laughs out loud. He is such a joy to me."
Hospice also helps de Ibern, a single mother. She meets regularly with a hospice counselor, Anne Sullivan, who gives her emotional support. Every time Preston faces a health crisis, de Ibern faces the heart-wrenching decision of whether to keep him alive. Sullivan stays by her side, de Ibern says, without passing judgment on her decision.
"As a parent, it's incomprehensible to have such a conversation," de Ibern says. "I have to have every respect for hospice people to encourage you while not interfering with your decisions."
Every Friday night for four hours, a hospice nurse stays with Preston so she can have time to herself.
"It's not just me sitting here," Sullivan said during a visit with de Ibern. "The whole agency is behind a family."
The gatekeepers between hospice and the families often are doctors. The hospice staff wants to encourage doctors to refer families to the program from the start, when a child's life-threatening illness is first diagnosed. The hospice can provide a range of medical assistance, from home chemotherapy for children with cancer to pharmaceuticals and IV treatment. With that comes spiritual counseling to help families confront a child's sickness.
"You'll have families that say they don't want to have hospice come in, that means they're giving up," said Julie Douglass, a hospice pediatric nurse. "When they let us in, they'll say, "I don't know what we would have done if you hadn't been there.' "
Sometimes, the hospice program is not called until a child's final hours. Other times, the child has already died. Hospice counselors say the longer they know families, the better they are able to help.
"It does make the bereavement easier if we're in there earlier," Sullivan said.
Physicians say that immediately referring patients to the program is not an easy thing to do. Morelli himself says he now realizes he had patients he probably should have referred to hospice care.
"It's a very difficult subject to broach, especially at the time of diagnosis," Morelli said. "You want to be positive and upbeat and help the family believe what their child has is curable and often it is. When you use the H-word, it's a death sentence."
At All Children's Hospital, 2,700 Pinellas County children were admitted last year, 43 with cancer. Forty Pinellas County children died at the hospital, from all causes of death.
Physicians and counselors in the oncology department at All Children's say they don't call the children's hospice when a child has cancer. Most of those children will recover, said Dr. Jerry Barbosa, medical director of pediatric hematology/oncology.
"I don't think it's the right thing to do because a lot of people identify hospice with death or dying," Barbosa said. "I'm sure many families would react in a negative way. . . . At the first diagnosis, the first thing we try to do is tell them cancer in children doesn't necessarily mean death."
David Gerber, a minister who heads All Children's Patient and Family Services, said some of hospice's programs are mirrored at the hospital. When cancer in a child is diagnosed, a support team is assembled for the families that includes a social worker, nutritionist, chaplain, nurses and other personnel to the meet the families' needs.
"After the physicians have determined there's nothing else they can do medically, we talk about hospice," said Lynda Walker, an All Children's social worker. "I tell them hospice is another team of people just like we have that will help them in their home."
Not all families want the hospice involved, Gerber said. Families have different ways of coping with the stress of having a sick child and the grief that comes with losing a child, he said.
"Some families are very gregarious and open," he said. "Some families when they face the death of a child will tend to pull in together. Sometimes the hospice concept is not for all people."
Orloff said she can accept the idea that some families may not want the hospice's assistance. But they should be given the choice, she said.
"I can't imagine there isn't a family on the planet who isn't struggling if they have a child with cancer," Orloff said. "Here we are to provide support for them."
Twelve years ago, Meggin Sarna was one of those mothers frightened by the word hospice when doctors said her son Kerry, born with dwarfism, would not live long.
"When that word first came out, I didn't want to hear it," said Sarna, who lives in St. Petersburg. "He was real sick. I just didn't want to hear it. But once they came over, things went just great."
Kerry, now a playful and talkative child, has been involved with hospice his entire life, through numerous surgeries, illnesses and recently through the death of one of his classmates at Tyrone Elementary School. Every other week he meets with Sullivan.
One afternoon shortly after the girl's death, Kerry was chattering with Sullivan about how he wanted to go to outer space to see if there were aliens.
"I'll look at them and see if they're mean or nice," Kerry said. "If they're mean, I'll blow them up."
Sullivan, herself a mother of four children, used the moment as an opportunity to counsel the child on his friend's death.
"You're always out there protecting people," she told him gently. "Even though you're a wonderful protector and friend, you didn't let her down."
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