Laws Governing Kids's Medical Treatment to Change

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Laws governing kids' medical treatment to change

By Melissa Evans, Staff Writer Posted: 01/01/2011 04:00:00 PM PST

Laws governing public health insurance force parents of dying children to make an excruciating choice: Either pursue treatment for a cure in hopes of saving the child's life, or receive treatment for comfort and pain management.

Page 1 of 2

Children are too young for Medicare, and MediCal pays only at the end of a child's life when a cure is not possible. Private insurance companies tend to follow the example of public insurance.

Under Medi-Cal, pediatric hospice is governed by the same laws as adult hospice. In order to qualify for these end-of-life services, patients must forgo curative treatment and their doctors must verify they have less than six months to live.

The California Legislature, however, passed a law in 2006 that allowed the state to apply for a waiver from the federal government's hospice

That will soon change.

rules. The waiver has now been complete, and the new rules have been slowly implemented in several counties.

This year, children on Medi-Cal will be able to receive palliative care - which includes pain and symptom management, spiritual guidance, counseling and other services - and still be able to pursue life-saving treatment under a pilot program making its way throughout the state.

In 2011, pilot programs will be launched in Los Angeles and Fresno counties, with TrinityCare as the lead agency. The program now cares for about 100 children in the South Bay and elsewhere, and those numbers are expected to rise.

"To be able to do this is huge for families," said Terri Warren, executive director of TrinityCare Hospice, which runs the only pediatric hospice program in Los Angeles County.

Barbara Roberts, executive director of the TrinityCare Foundation, said the new law allows families to come into contact with hospice far sooner in the process, which will make care decisions easier for parents.

The Torrance-based hospice provider, an arm of Providence Health and Services, has to cover much of the cost of children's hospice through fundraising.

"Most children are going to live a long time," she said. "Some of the children who may require hospice down the line will already be familiar with us, and that will make the transition a little

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1/3/2011

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easier should that step be necessary."

The prognosis for adults tends to be more predictable, officials say. The vast majority of children on hospice, however, suffer either from cancer or a range of genetic abnormalities that can have varying outcomes.

Children with cystic fibrosis, for example, can live into their 30s; children with Tay-Sachs disease usually don't live past age 4.

Page 2 of 2

died of cancer at 16 but was unable to receive hospice care until the end of his life.

At the time, his mom, Shannon Snow, said the system caused "heartache, confusion, anxiety, and stress among medical professionals, caregivers and families and ultimately compromised care."

She and her son lobbied for the change, and the new law was named in his honor.

"It's hard enough for anyone to face their own mortality," Warren said. "It's a mental shift that parents can't make. Even if deep down they want (hospice), they can't give up hope. We hope this will smooth that pathway."

The new program will also make it easier for parents to navigate the health system, Warren and Roberts said. In Orange County, where new rules were implemented last year, Trinity was able to hire a "care coordinator" who helps parents make difficult decisions.

The goal of most hospice programs, for both children and adults, is to keep the patient at h ome. The coordinator will work with parents, physicians, pain specialists and others to determine when a hospital visit is necessary and when it's OK to stay at home.

Theoretically, children will be receiving these services for years, and the time they have left will be higher quality, officials say.

The 2006 law was inspired by Nick Snow, who Advertisement

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1/3/2011

Format Dynamics :: CleanPrint :: http://www.dailynews.com/news/ci_16988358

Laws governing kids' medical treatment to change

By Melissa Evans, Staff Writer Posted: 01/01/2011 04:00:00 PM PST

Laws governing public health insurance force parents of dying children to make an excruciating choice: Either pursue treatment for a cure in hopes of saving the child's life, or receive treatment for comfort and pain management.

Page 1 of 2

Children are too young for Medicare, and MediCal pays only at the end of a child's life when a cure is not possible. Private insurance companies tend to follow the example of public insurance.

Under Medi-Cal, pediatric hospice is governed by the same laws as adult hospice. In order to qualify for these end-of-life services, patients must forgo curative treatment and their doctors must verify they have less than six months to live.

The California Legislature, however, passed a law in 2006 that allowed the state to apply for a waiver from the federal government's hospice

That will soon change.

rules. The waiver has now been complete, and the new rules have been slowly implemented in several counties.

This year, children on Medi-Cal will be able to receive palliative care - which includes pain and symptom management, spiritual guidance, counseling and other services - and still be able to pursue life-saving treatment under a pilot program making its way throughout the state.

In 2011, pilot programs will be launched in Los Angeles and Fresno counties, with TrinityCare as the lead agency. The program now cares for about 100 children in the South Bay and elsewhere, and those numbers are expected to rise.

"To be able to do this is huge for families," said Terri Warren, executive director of TrinityCare Hospice, which runs the only pediatric hospice program in Los Angeles County.

Barbara Roberts, executive director of the TrinityCare Foundation, said the new law allows families to come into contact with hospice far sooner in the process, which will make care decisions easier for parents.

The Torrance-based hospice provider, an arm of Providence Health and Services, has to cover much of the cost of children's hospice through fundraising.

"Most children are going to live a long time," she said. "Some of the children who may require hospice down the line will already be familiar with us, and that will make the transition a little

Advertisement

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1/3/2011

Format Dynamics :: CleanPrint :: http://www.dailynews.com/news/ci_16988358

easier should that step be necessary."

The prognosis for adults tends to be more predictable, officials say. The vast majority of children on hospice, however, suffer either from cancer or a range of genetic abnormalities that can have varying outcomes.

Children with cystic fibrosis, for example, can live into their 30s; children with Tay-Sachs disease usually don't live past age 4.

Page 2 of 2

died of cancer at 16 but was unable to receive hospice care until the end of his life.

At the time, his mom, Shannon Snow, said the system caused "heartache, confusion, anxiety, and stress among medical professionals, caregivers and families and ultimately compromised care."

She and her son lobbied for the change, and the new law was named in his honor.

"It's hard enough for anyone to face their own mortality," Warren said. "It's a mental shift that parents can't make. Even if deep down they want (hospice), they can't give up hope. We hope this will smooth that pathway."

The new program will also make it easier for parents to navigate the health system, Warren and Roberts said. In Orange County, where new rules were implemented last year, Trinity was able to hire a "care coordinator" who helps parents make difficult decisions.

The goal of most hospice programs, for both children and adults, is to keep the patient at h ome. The coordinator will work with parents, physicians, pain specialists and others to determine when a hospital visit is necessary and when it's OK to stay at home.

Theoretically, children will be receiving these services for years, and the time they have left will be higher quality, officials say.

The 2006 law was inspired by Nick Snow, who Advertisement

http://www.dailynews.com/fdcp?1294075926309

1/3/2011

Format Dynamics :: CleanPrint :: http://www.dailynews.com/news/ci_16988358

Laws governing kids' medical treatment to change

By Melissa Evans, Staff Writer Posted: 01/01/2011 04:00:00 PM PST

Laws governing public health insurance force parents of dying children to make an excruciating choice: Either pursue treatment for a cure in hopes of saving the child's life, or receive treatment for comfort and pain management.

Page 1 of 2

Children are too young for Medicare, and MediCal pays only at the end of a child's life when a cure is not possible. Private insurance companies tend to follow the example of public insurance.

Under Medi-Cal, pediatric hospice is governed by the same laws as adult hospice. In order to qualify for these end-of-life services, patients must forgo curative treatment and their doctors must verify they have less than six months to live.

The California Legislature, however, passed a law in 2006 that allowed the state to apply for a waiver from the federal government's hospice

That will soon change.

rules. The waiver has now been complete, and the new rules have been slowly implemented in several counties.

This year, children on Medi-Cal will be able to receive palliative care - which includes pain and symptom management, spiritual guidance, counseling and other services - and still be able to pursue life-saving treatment under a pilot program making its way throughout the state.

In 2011, pilot programs will be launched in Los Angeles and Fresno counties, with TrinityCare as the lead agency. The program now cares for about 100 children in the South Bay and elsewhere, and those numbers are expected to rise.

"To be able to do this is huge for families," said Terri Warren, executive director of TrinityCare Hospice, which runs the only pediatric hospice program in Los Angeles County.

Barbara Roberts, executive director of the TrinityCare Foundation, said the new law allows families to come into contact with hospice far sooner in the process, which will make care decisions easier for parents.

The Torrance-based hospice provider, an arm of Providence Health and Services, has to cover much of the cost of children's hospice through fundraising.

"Most children are going to live a long time," she said. "Some of the children who may require hospice down the line will already be familiar with us, and that will make the transition a little

Advertisement

http://www.dailynews.com/fdcp?1294075926309

1/3/2011

Format Dynamics :: CleanPrint :: http://www.dailynews.com/news/ci_16988358

easier should that step be necessary."

The prognosis for adults tends to be more predictable, officials say. The vast majority of children on hospice, however, suffer either from cancer or a range of genetic abnormalities that can have varying outcomes.

Children with cystic fibrosis, for example, can live into their 30s; children with Tay-Sachs disease usually don't live past age 4.

Page 2 of 2

died of cancer at 16 but was unable to receive hospice care until the end of his life.

At the time, his mom, Shannon Snow, said the system caused "heartache, confusion, anxiety, and stress among medical professionals, caregivers and families and ultimately compromised care."

She and her son lobbied for the change, and the new law was named in his honor.

"It's hard enough for anyone to face their own mortality," Warren said. "It's a mental shift that parents can't make. Even if deep down they want (hospice), they can't give up hope. We hope this will smooth that pathway."

The new program will also make it easier for parents to navigate the health system, Warren and Roberts said. In Orange County, where new rules were implemented last year, Trinity was able to hire a "care coordinator" who helps parents make difficult decisions.

The goal of most hospice programs, for both children and adults, is to keep the patient at h ome. The coordinator will work with parents, physicians, pain specialists and others to determine when a hospital visit is necessary and when it's OK to stay at home.

Theoretically, children will be receiving these services for years, and the time they have left will be higher quality, officials say.

The 2006 law was inspired by Nick Snow, who Advertisement

http://www.dailynews.com/fdcp?1294075926309

1/3/2011