PEDIATRIC PALLIATIVE CARE IN CALIFORNIA
The boy who never smiled
Lori Butterworth, M.Ed.
Co-Founder, Children’s Hospice & Palliative Care Coalition of California
Founder and Executive Director, Jacob’s Heart Children’s Cancer Support Services
In describing the current landscape of Pediatric Palliative Care (PPC) in the State of California, it’s important to begin with a child. Allow me, therefore, to introduce you to Saúl, the humble son of migrant farmworkers from the agricultural belt of California, who, in 1999, unknowingly ignited a statewide movement.
The Boy Who Never Smiled
It was late in the day when an oncology social worker from Lucile Packard Children’s Hospital Stanford called asking if there was any possibility Jacob’s Heart1 could provide a ride home from the hospital for a 13-year-old boy with osteosarcoma. He had been hospitalized for several weeks recovering from surgery, intensive chemotherapy, and radiation, and was finally being discharged. With no options other than a public bus, I decided to pick him up myself. The social worker warned me, “This boy never smiles.”
When I arrived at the hospital and met Saúl, I realized the social worker wasn’t exaggerating; Not only was there no smile, there were no words, no eye contact. During the two-hour drive from Stanford to the farmworker camp where Saúl lived, I tried awkwardly to make conversation with his mother, who spoke a Spanish dialect that I barely understood. Saúl said nothing.
But something extraordinary happened when we arrived at the migrant camp made up of ramshackle houses in the middle of acres and acres of lush Central California strawberry fields. Saúl began to smile.
As we pulled up to his family home, Saúl smiled and giggled as he was greeted with hugs and cheers from his 12 siblings, neighbors, and friends. He was home, and “the boy who never smiled,” was laughing.
I snapped a photo for the social worker and kept a copy for myself. It wasn’t that he never smiled…
About two years after that cheerful homecoming, Jacob’s Heart had become intimately involved with Saúl and his family, providing rides to and from treatment, help with rent, counseling, and support to his siblings. As Saúl’s disease progressed, the pain and long drives to and from the hospital became unbearable and impossible to manage. As a neophyte in the fight for pediatric hospice, I tried to engage a local hospice to assist with Saúl’s pain. Sadly, it was through this attempted referral that I learned why children like Saúl didn’t “qualify” for hospice. Without options, we made an emergency 911 call. And tragically, Saúl died somewhere between the emergency department and a makeshift room at a local hospital where no one knew him.
Two weeks later, on September 11, 2001, I met Devon Dabbs, a documentary filmmaker and children’s advocate. I poured my heart out to Devon; she was immediately sympathetic to Saúl’s story, and we were connected by a purpose more profound than either of us could have imagined. Together, we committed to righting the injustices that hospice regulations, which were designed for adult patients, imposed on the families of children like Saúl. It would have been inhumane to ask Saúl’s parents to give up treatment that might save their precious son’s life in order to get his pain managed at home.
Removing the Roadblocks – The Path to the Waiver
The Children’s Hospice & Palliative Care Coalition of California (CHPCC) was founded in 2001, the same year Saúl died. CHPCC quickly grew to become a unification of children’s hospitals, hospices, pediatricians, home health agencies, and families with the shared vision of a medical system that not only works to cure disease but also provides compassionate emotional support, and honors childhood.
The first step in forging a path to open access to home-based palliative care for children meant passing legislation that mandated a federal waiver, to “waive” hospice regulations for child patients under the age of 21. As a result, CHPCC, in collaboration with lawmakers and advocates across the state, drafted The Nick Snow Children’s Hospice and Palliative Care Act of 2006 (Assembly Bill 1745).
The Nick Snow Act required the California Department of Health Care Services (DHCS) to submit a Home and Community-Based Services waiver, which enabled seriously-ill children and their families to receive in-home palliative care, while at the same time, being allowed to continue pursuing curative treatment for the child’s life-limiting or life-threatening condition.
The ensuing Partners for Children Pediatric Palliative Care Waiver (PFC) was a demonstration pilot program limited to designated counties and certain qualifying diagnostic criteria. In specified counties, the waiver allowed children with life-threatening conditions to receive curative treatment alongside home-based services including care coordination, pain and symptom management, expressive therapies, and family counseling. The waiver was an important step forward, but qualification criteria limited access for those who lived outside pilot California counties.
It is important to note that had the PFC waiver been available in 2001, Saúl would have met the three key qualification criteria: 1) He lived in Santa Cruz, a waiver-designated county; 2) His recurrent cancer was a PFC qualifying medical condition; and 3) He had full-scope Medi-Cal. Perhaps, in a different time, the 911 call could have been avoided, and Saúl’s pain could have been managed at home without having to put his parents through the horror of not “qualifying” for hospice. The first child was enrolled in PFC in 2009, eight years after Saúl’s death.
In 2012, with two years of PFC underway, the UCLA Center for Health Policy Research published “Better Outcomes, Lower Costs: Palliative Care Program Reduces Stress, Costs of Care for Children with Life-Threatening Conditions,”2 a study that demonstrated dramatic improvements in the physical and emotional well-being of children and families participating in PFC, as well as significant cost savings to the State due to a reduction in the length and occurrences of hospitalizations. The study’s key findings include: an 11% cost savings for a traditionally high-cost population, a 32% reduction in the average number of days spent in the hospital per month per member, and a 35% reduction in hospital stay costs.
A subsequent 2015 study,3 “Impact of a Pediatric Palliative Care Program on the Caregiver Experience,” found a nearly 50% reduction in the average number of inpatient days per month, from 4.2 to 2.3; a significant drop in average hospital length of stay from 16.7 days to 6.5 days (more than a 60% reduction); a strong trend in reducing 30-day readmission rates, from 45% of admissions to 37%; and net savings—after deducting program costs—of $3,331 per enrollee per month.4 Impressive!
In spite of overwhelming evidence confirming the efficacy of the PFC program, providers were challenged by a complex billing structure, payment delays, and unreimbursed administrative costs (to name a few), which made it increasingly difficult to sustain their local programs. The final straw came in 2017 when the Federal Centers for Medicaid and Medicare (CMS) established a requirement that any agency responsible for care coordination and case management could not be the same agency delivering care. As a result, providers already struggling to manage an inefficient, bureaucratic system were presented with yet another roadblock; one that finally proved insurmountable. Despite advocacy efforts, Federal CMS declined to modify the new guidelines, and in 2018, California DHCS made the decision to not pursue renewal of the PFC waiver and, instead, work with stakeholders to find alternative mechanisms to deliver comparable PPC services to children and their families.
CHPCC becomes a Division of the Coalition for Compassionate Care of California
The termination of the waiver was, on the one hand, disappointing news that rippled throughout the PPC community in California. But it also provided an opportunity to consider other options for a state-wide comprehensive service-delivery model for seriously-ill children in California in partnership with the Coalition for Compassionate Care of California (CCCC).
A strategic alliance was formed, and CHPCC became a division of CCCC. The idea behind this unification was to combine two of California’s leading nonprofits dedicated to promoting access to high-quality, compassionate care for all who are seriously ill or nearing the end of life. The alliance leveraged Devon Dabbs’ expertise and leadership in advocacy and pediatric program development, while aligning the next phase of pediatric programming with CCCC’s palliative care advocacy and location in Sacramento.
Current Options for Children after the Waiver
The convergence of expertise with CHPCC and CCCC brings the pediatric palliative care movement in California to a critical juncture; we have a responsibility to creatively integrate available mechanisms to deliver home-based hospice and palliative care to children in the post-waiver era. Our current focus is on optimizing access to and utilization of existing programs, while advocating for adjustments and improvements where needed.
Concurrent Care for Children Requirement (Concurrent Care)
Even before the waiver ended, some California hospice providers had already begun to move away from the PFC waiver. Instead, they chose to utilize the Concurrent Care for Children Requirement (Concurrent Care), Section 2302 of the Patient Protection and Affordable Care Act.
Enacted by Congress in 2010, Concurrent Care was designed “to remove the prohibition of receiving curative treatment upon the election of the hospice benefit by, or on behalf of, a Medicaid or Children’s Health Insurance Program (CHIP) eligible child.” A year later, in 2011, California adopted the Concurrent Care which made concurrent hospice and curative treatment available to children throughout the state regardless of their county of residence.
While this is a tremendous victory for the pediatric palliative care movement, the six-month life expectancy required for hospice eligibility still poses a barrier. This barrier is being chipped away by dedicated providers like Dr. David Sine in California’s Central Valley, whose award-winning team provides support and training to other hospice agencies navigating Concurrent Care with the best interest of children at the center of care. Like Dr. Sine says, “We find ways to get kids the care they need under Concurrent Care by fitting the program to meet the needs of the child, not the other way around.”
In short, if Concurrent Care had been available in 2001, it would have provided a way for Saúl to access hospice care while undergoing aggressive therapies to combat his disease, but his parents would still be confronted with pain of affirming that their son’s life would likely end in six months.
California Senate Bill 1004 (SB 1004)
While the effective utilization of Concurrent Care has gained momentum in California, with the waiver gone, the application of mechanisms to deliver care to children upstream of the six-month barrier has been ongoing. On January 1, 2018, after significant involvement by pediatric palliative care advocates, California Senate Bill 1004 (SB 1004),5 which required DHCS to establish standards for Medi-Cal Managed Care Plans to ensure delivery of palliative care services, went into effect for adult patients. SB 1004 was inspired by and based on the research (mentioned above) from the PFC waiver. The bill was designed as a cost-neutral benefit intended to extend palliative care to all Medi-Cal eligible patients at all stages of serious illness. A year after its implementation for adults, on January 1, 2019, SB 1004 went into effect for children, with the intention of replacing the PFC program, which ended on December 31, 2018.
The implementation of SB 1004 in the pediatric population has not been without hurdles, and advocacy efforts are currently underway to ensure that children throughout the state have equitable access to home-based palliative care. CHPCC has worked closely with DHCS, hospice and home health agencies, palliative care providers, California Children’s Services county programs, and Medi-Cal managed care plans to collectively address the concerns with both implementation of SB 1004 and the ongoing delivery of home-based palliative care. Three versions of Numbered Letter 16-1218,6 the guidance for California Children’s Services on SB 1004, have been released by DHCS this year, all with input from pediatric palliative care advocates. Additional guidance on SB 1004 in pediatrics is available through the All Plan Letter 18-020,7 which provides direction for Medi-Cal Managed Care Plans, who are responsible for ensuring that the patients they cover have access to home-based palliative care.
Specifically, under SB 1004, there are seven palliative care services that Medi-Cal requires when determined to be medically necessary for eligible patients.
- Advance Care Planning
- Palliative Care Assessment and Consultation, including family training
- Plan of Care
- Palliative Care Team
- Care Coordination
- Pain and Symptom Management
- Mental Health and Medical Social Services, including anticipatory grief bereavement counseling and family counseling
Notably absent from SB 1004 are expressive therapies, which were widely used under the PFC wavier, and respite care for families, which was administratively difficult but still utilized under PFC. However, there is great potential as creative utilization of Concurrent Care is expanding in California, and research and advocacy seeks to ensure that the benefit to children and their families previously shown in the PFC pilot studies is realized through the current suite of services offered under SB1004.
Back to the Future
As noted earlier, studies have shown that to improve the quality of life for a child combating life-threatening illness while at the same time using public dollars efficiently, a compassionate system of care that attends to the physical, emotional, spiritual, and psychosocial needs of a child must be implemented early on in the disease trajectory, not only in the final six months. So, in the post-waiver era in California, we are charged with the responsibility to ensure that the supportive services currently available to seriously-ill children and their families are well understood and implemented to the highest extent of their availability.
Looking back over the past two decades, much has been accomplished since the day Saúl died in unnecessary confusion and suffering. There can be a tendency to rest in the pride of a job well done. However, humility is the order of the day as we have yet to completely embrace the needs of seriously-ill children in the arena of public policy with the same ardor and tenderness with which we embrace children in other areas of life. Those too little or too sick to speak for themselves require an extra measure of love and concern from lawmakers and healthcare systems. Saúl deserved a better end to his story, as do all children whose time on this earth is brief.
- Jacob’s Heart Children’s Cancer Support Services provides psychosocial, emotional, and financial support to seriously-ill children and their families in Central California.
- Gans, D., Kominski, G., Roby, D., Diamant, A., Chen, X., Lin, W., & Hohe, N. (2012). Better Outcomes, Lower Costs: Palliative Care Program Reduces Stress, Costs of Care for Children with Life-Threatening Conditions.
- Summary and History of CHPCC and the Coalition for Compassionate Care of California (2018).
- Gans, Daphna, et al., Impact of a Pediatric Palliative Care Program on the Caregiver Experience. Journal of Hospice & Palliative Nursing, vol. 17, no. 6, 2015, pp. 559–565.