A glimmering light shines in California’s often dim health care tunnel for young patients with life-threatening illnesses and their families. Partners for Children is a promising pilot program for patients who may not outlive their parents.
The new program allows children enrolled in Medi-Cal who have chronic, but not necessarily terminal, illnesses to receive pain and symptom management, or palliative care, at home — where many families believe they belong. Medi-Cal is California’s Medicaid program.
Made possible by California’s Pediatric Palliative Waiver, Partners for Children is a federally approved demonstration project in 13 pilot counties. Children who are 20 years old or younger and eligible for Medi-Cal can participate in the pilot program. Eligible beneficiaries have medical conditions ranging from cancer and cystic fibrosis to brain or head injuries. Therapies are delivered by home- and community-based palliative care providers.
Partners for Children has fueled the expansion of Trinity Care Hospice, the only dedicated, firmly established pediatric hospice and palliative care program in Los Angeles and Orange Counties.
With its Orange County TrinityKids Care program already in operation, Torrance-based Providence TrinityCare Hospice recently received a grant of $150,000 from not-for-profit UniHealth Foundation. The funds allowed TrinityKids Care to expand current hospice services to children diagnosed with life-threatening illnesses and approved for care by Medi-Cal and California Children’s Services, Â a state program for children with certain diseases or health problems.
Diane Bassett, spokesperson for Providence Little Company of Mary Medical Centers in Southern California, a not-for-profit health care system, said special programs are needed for children facing life-threatening or chronic situations.
“Hospice and in-home palliative care were designed for adults who have diseases that progress in a predictable way. Children with disease do not progress the same way,” Bassett said. “Pediatric palliative care is its own specialty.”
Partners for Children delivers a compassionate, cost-effective way to provide care for chronic but not necessarily terminal conditions. “Otherwise, the family is forced to keep bringing children into the ER or hospital setting,” Bassett said. Both options are expensive and unsettling.
‘Comfortable and at Home’
“The child should be comfortable and at home while still receiving high-level curative measures and having a sense of normalcy,” said Barbara Roberts, executive director of Providence Trinity Care Hospice Foundation. “It’s the same philosophy we utilize with hospice: pain management, comfort care and more with a holistic approach,” she said.
TrinityKids Care expects to treat 50 children in its first year.
Through the Partners for Children pilot, families can receive needed relief from being stressed caregivers. Patients undergo non-traditional expressive therapies like art, music and massage.
For patients of all ages, palliative care addresses “whole person” needs: physical, emotional, social and spiritual. Not limited to hospice care, it may be used during any point of an illness, including the date of diagnosis.
Hallmarks of the Partners for Children program include family-centered communication, a focus on quality of life and relief of suffering through use of an experienced multi-disciplinary team, said Devon Dabbs, co-founder of the statewide Children’s Hospice and Palliative Care Coalition based in Watsonville, near Monterey.
CHPCC, she said, is “a social movement enacted by an inspired group of parents, clinicians, institutions, policy makers and concerned citizens from throughout California — who joined forces on behalf of those too little or too sick to speak for themselves — to develop programs and policies which directly impact and improve their care.”
Kids Are Not Adults
“We’re so grateful to be moving forward, supporting children and families through some very difficult times,” Dabbs said. “It’s a miracle in this economic climate.”
The coalition asserts that children with serious illnesses suffer from a broken and inefficient health care system and that most children living with life-threatening conditions who need hospice and palliative care support simply do not get it. This, advocates say, results in avoidable and unnecessary pain and suffering. Additionally, restrictive federal hospice eligibility regulations do not work when applied to children.
Federal hospice eligibility regulations mandate that a physician and patient/ parent agree the patient has less than six months to live if the disease follows its normal course. All treatment intended specifically to cure his or her disease or prolong life must stop. Prior to the waiver, home-based palliative care was only accessible by most pediatric patients through the hospice benefit.
“It is inhumane to ask a parent to give up on curing their child’s disease or prolonging their life in order to receive the pain management and family support offered by hospice and palliative care teams,” Dabbs said.
Last year, the waiver program began in five California counties, including San Diego. This year, six more counties, including Orange, began participating. Fresno and Los Angeles Counties will join in 2011.
San Diego Hospice and The Institute for Palliative Medicine was the first participant in Partners for Children in California. Spokesperson Melissa DelaCalzada said all programs must meet the same requirements outlined by Medi-Cal and CCS.
“The only difference would be the providers themselves. Programs and services offered should all be the same,” she said.
Let it Snow
The waiver program grew out of the 2006 Nick Snow Children’s Hospice and Palliative Care Act (AB 1745), co-authored by former Assembly member Wilma Chan (D-Oakland), former Senate President Pro Tempore Don Perata (D-Alameda) and former Sen. Deborah Ortiz (D-Sacramento). It asserts that all children diagnosed with a life-threatening illness should have access to hospice and palliative care without regard to other treatments being carried out, that one shouldn’t preclude the other.
Nick Snow, diagnosed at age six in 1996 with a rare childhood cancer, became a national spokesperson for palliative care for children. In 2003, Snow, then a middle schooler in Grass Valley, went to Washington, D.C., to ask Congress to change federal hospice rules, which he contended did not work for children. He also worked with the Children’s Hospice and Palliative Care Coalition and Gov. Arnold Schwarzenegger (R). Snow died — cancer-free — in 2006 from an infection.
Moving Forward
Dabbs noted that Section 2302 of the federal Patient Protection and Affordable Care Act mandates that children who are terminally ill will receive or have access to hospice services at the same time they are continuing with curative or life-prolonging therapy. Unlike the federal law, California’s pediatric waiver program doesn’t require patients to have a six-month life expectancy to be eligible for services. “The vast majority of children receiving services under the PPACA waiver would not qualify for the new federal benefit that still requires that children meet the federal hospice eligibility criteria of six month life-expectancy,” Dabbs said.
Dabbs remains optimistic about forward momentum. “This all says a lot about the Department of Health Care Services,” she said. “With any bureaucracy, of course there can be challenges. Happily, the agency has committed to ensuring the project stays viable.”
At DHCS Children’s Medical Services Branch, physician and public health specialist Jill Abramson applauds the initiatives and results targeting children with grave prognoses, some of whom may live much longer than expected or even recover. TrinityKids Care, for example, has been “a driver, very involved,” she said.
“Hopefully, we’ll be able to continue with expansion efforts and have new counties come on next year,” she said. Looking ahead, Abramson believes health care reform will have a positive net impact on children with life-threatening conditions. “We’ll continue to work on making the best-informed policies that will service our children in the best possible way.”Â
Partners for Children is improving quality of lives, as parent Alba Reilly told management of the San Diego program via a YouTube video. She said the program “had a lot of hands that I didn’t have, a lot of help that I didn’t have before and could open doors that I couldn’t open myself.”