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Network urges treatment aimed at longer, better lives for young patients
By Cheryl Powell Beacon Journal medical writer
Published on Sunday, Sep 30, 2007
Parents shouldn't be forced to choose between life-prolonging treatments and life-enhancing comfort care for a critically ill child.
That's the message doctors and other health-care experts who specialize in support services known as palliative care are trying to share.
A statewide coalition dedicated to improving palliative care for children with life-threatening illnesses is holding a national conference this week in Akron to raise awareness about this and other related issues.
The Ohio Pediatric Palliative & End-of-life Care Network's three-day conference begins Thursday morning with an appearance by actress Melissa Gilbert, president of the board of the Children's Hospice and Palliative Care Coalition.
The former Little House on the Prairie star and her national organization helped enact a trial program in California last year that will allow children with a life-threatening illness to receive supportive services through Medicaid without giving up their curative treatments.
''This enables us to take care of these kids and give them the pain medicine they need, the spiritual and psycho-social support they need,'' Gilbert said in a recent phone interview from her California home.
Each year, about 3,550 Ohio children face a life-threatening illness, according to the state palliative care coalition.
The group estimates that about half of those children need palliative care at any given time.
Palliative care can include counseling, pain-management services, music and art therapy and respite care, along with support for parents and siblings.
But insurers and public health programs often won't pay for palliative care unless life-prolonging treatments are abandoned, said Dr. Sarah Friebert, director of the palliative care division at Akron Children's Hospital.
Ohio's Medicaid program, for example, forces patients to choose between home health care services and hospice services, a form of palliative care for people expected to die within six months, according to the state palliative care coalition.
Treatment beneficial
But that doesn't work for children, the coalition argues in a new position paper. At the end of life children often experience less disability than adults and continue to benefit from aggressive treatments.
''Most families will want to continue aggressive therapies right up until the time their child dies, and that's appropriate in most cases,'' Friebert said.
In some cases, a child with a life-limiting illness can lead a happy, active life for years.
Eight-year-old Devan McKinney, for example, struggles with problems caused by a brain malformation and a rare disorder that causes his own immune system to attack his gastrointestinal system and other parts of his body.
So far, the second-grader from Kent has defied the predictions of doctors, who warned he likely wouldn't walk or talk.
When Julie McKinney and her husband, Scott, adopted Devan as a baby, they knew people with his condition typically don't live past childhood.
''We really don't know what his long-term prognosis is,'' McKinney said. ''We really don't look at predictions as far as where he's going to go. We just let him tell us.''
His parents rely on the palliative care team at Akron Children's to coordinate his care and help them sort through advice from Devan's dozen specialists in Akron, Cleveland and Cincinnati.
His mother often calls the palliative care program when she doesn't know where else to turn for answers. And the doctors and nurses spend hours talking to her, sometimes even coming to her home.
McKinney realizes the hospital doesn't always get paid for the palliative care it provides to her family.
''I don't know how they paid for it, but I wish I had a million bucks to give them, because I would,'' she said. '' . . . It's a phenomenal help for us.''
Lack of reimbursement
Akron Children's Friebert said the hospital only gets reimbursed for about 30 percent of the $1 million it spends annually to provide palliative care services. The hospital relies on donations and other revenues to offset that loss.
''There's a huge lack of reimbursement for the type of care that we provide,'' Friebert said.
Most parents, however, don't realize the hospital isn't getting paid for the services. Palliative care staff members don't deny care because of lack of reimbursement, Friebert said.
''We've done this behind the scenes, so families don't know,'' she said.
But eventually, she said, ''we can't continue to do it'' without payment.
Care deserves coverage
''The bottom line is that this is medical care that deserves to be covered just like any other form of medical care,'' she said. ''It shouldn't rest on philanthropic support.''
Friebert founded the Ohio coalition and helped plan this week's conference featuring Gilbert and other national experts.
The actress took up the cause a couple years ago after visiting a boy who was dying of cancer.
As president of the Screen Actors' Guild at the time, Gilbert was asked to provide an honorary guild card to the young aspiring actor.
He died two weeks later.
''Most children who die in the United States die in uncontrolled pain,'' she said. ''That's so wrong. I think we haven't been able to be given the opportunity to get the message out there.''
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com.
Parents shouldn't be forced to choose between life-prolonging treatments and life-enhancing comfort care for a critically ill child.
Get the full article here.
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