It all began on the morning of September 11, 2001, in an elementary school parking lot in our small California coastal town. We had just dropped our kids off at kindergarten, and like so many people on that terrible day, we both needed to talk. Despite the fact that we had just met, we sat down over a cup of coffee and began a conversation that was to change our lives. "We" were Lori Butterworth, the founder and director of Jacob's Heart, an organization that supports parents whose children have cancer, and Devon Dabbs, a documentary film maker. The emotion of 9/11 and what was happening in the world that day caused both of us to think about how we needed to do something constructive; the only way we knew how was to forge ahead for a cause bigger than ourselves. That cause became meeting the unique needs of families of children with life-threatening conditions.
Although neither of us had lost a child, the work we started that day has meant that we have worked with many families who have. When we tell their stories, hearts shift. In the last 6 years, our lives have also shifted in ways we could not have imagined. We are still moms who drop off our children at school and worry about the state of the world, but we are now the co-executive directors of the Children's Hospice & Palliative Care Coalition (CHPCC), a group that works to improve access to hospice and palliative care for children. Our Web site, http://www.Childrenshospice.org, has more details.
Our coalition is a nonprofit organization made up of children's hospitals, hospices, pediatricians, home health agencies, and families who share the vision of a medical system that not only works to cure disease but also provides compassionate emotional support and honors childhood. Along with providing palliative care to children and families in a tri-county pilot program, we are also working with the leaders of the California Legislature and the State Department of Health Care Services (DHCS) to create a new hospice benefit for children enrolled in Medicaid (known as Medi-Cal in California). Many people have been touched by the needs of our families and have joined our fight, from local hospice nurses to Hollywood heavyweights, including Johnny Depp, Toby Maguire, Mandy Moore, and the former head of the Screen Actors Guild, Melissa Gilbert (who recently became the Chair of our Board of Directors). We are especially grateful to the California HealthCare Foundation, which has provided financial support to the coalition.
We hope the story of this work will inspire everyone who cares about critically ill children and their families to learn more about hospice and palliative care services. We are part of a national movement that seems to be nearing a tipping point. We hope you will join us and support making hospice and palliative care available to everyone who is dealing with a life-threatening illness or condition.
Why Do Children and Families Need Hospice and Palliative Care Services?
Children diagnosed with life-threatening conditions and their families have an acute need for coordinated comprehensive support-care that integrates medical, psychological, social, emotional, and spiritual services from the point of diagnosis throughout the course of treatment. According to the Institute of Medicine's 2002 report (which was printed in 2003: Field & Behrman, 2003) When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families, "too often children with fatal or potentially fatal conditions and their families fail to receive competent, compassionate, and consistent care that meets their physical, emotional, and spiritual needs" (p. 3). The American Academy of Pediatrics' Policy Statement on Palliative Care for Children (2000) describes it this way: "Time of death is often difficult to predict. If the nearness of death is used to determine if children receive palliative care, some children may die without the benefits of individualized family-centered palliative care. With a broader definition that includes children living with a life-threatening condition, all children who need palliative care may benefit."
Why is the system failing the patients we want most to help? We think that current federal hospice eligibility requirements are a serious barrier to improving care. To receive hospice services, a physician must declare, and parents must sign, a written statement affirming that the child has less than 6 months to live, and the family must agree to forego any treatment intended to cure their child's disease or prolong their life (e.g., chemotherapy, dialysis, radiation, transplant rejection drugs). These regulations, developed in the 1970s based on adult cancer treatment protocols, have serious shortcomings for adults and are even more problematic for children. Because federal regulations are often adopted by private insurance companies, the impact of these regulations extends beyond Medicare and Medicaid.
Our experience has confirmed that the application of adult federal hospice eligibility requirements to children results in:
* Families being left with the cruel and inhumane choice between "trying to cure the child's disease" and "managing pain and focusing on quality of life"
* An unnecessary division between curative or life-sustaining treatment and home hospice and palliative care that causes confusion, anxiety, and stress among medical professionals, caregivers, and families
* Children undergoing painful procedures and suffering from the symptoms of advancing disease without adequate relief, despite the fact that modern medicine has the means to relieve their pain and improve most symptoms
* Denial of the necessary services critical to children and their families, including 24-hour on-call nursing, respite care, pain management, expressive therapies, ongoing psychosocial support, and bereavement services
* Families caring for children with life-threatening conditions at home having to administer medications and deal with emergency situations without adequate support, resulting in an excessive number of preventable emergency room admissions, undue stress and hardships for the families, and, most importantly, compromising the health and lives of children
* Families receiving sporadic and, at best, minimal access to psychosocial services
"I wish I didn't have to give my son shots every day. [horizontal ellipsis] or take him to the germy emergency department when his immune system was low. I wish someone 'qualified' could have come and taken care of my son[horizontal ellipsis] I wish I didn't have to pay for PET scans with my credit card. I wish there had been someone I could call in the night when I had questions and was worried[horizontal ellipsis] I wish my son could have died at home instead of in the hospital with tubes, IV lines, beeping machines and strangers. I wish there was grief support in this community." - -Shannon Snow, Nick's Mom
A pediatric palliative care knowledge base exists and is growing among the nation's children's hospitals, home health agencies, and hospice providers. Because there is no system of reimbursement for integrated pediatric home hospice and curative services, however, this care is not yet widely available and utilized. We believe that concurrent reimbursement for curative and life-sustaining treatment and home hospice and palliative care is fiscally responsible. New costs for palliative services should be offset by savings in acute services. For example, better coordination and continuity of medical treatment helps to reduce preventable emergency room visits, avoid or shorten hospital stays, and prevent duplicative tests and exams. A system of home nursing and palliative care frees families and physicians to choose the most appropriate setting for care, including less expensive alternatives to hospitals, such as the home, skilled nursing facilities, licensed hospice facilities, or congregate living health facilities.
Parent Surveys and Interviews: Documenting the Need
Although the prestigious Institute of Medicine had defined the problem, we felt a need to document the situation in California, which has an especially rich array of services and a sophisticated children's medical care system. In addition, most low-income children with a life-threatening condition already had a case manager through the California Children's Services (CCS) program, and it was necessary to find out if their needs were really being met. We decided to survey families using our new Web site "Partnership for Parents" (http://www.partnershipforparents.org) to reach them. Launched in 2006, this site offers support for parents whose children have a serious illness and for families grieving the loss of a child. More than 225 families responded to a six-question survey. After this, using the assistance from several hospice nurses, we also completed extensive in-person interviews with six parents of children who had died after lengthy treatment and extended hospitalizations.
Three of the six families were not offered (and never received) hospice care. These families expressed grave regrets and immense anger that their children were not able to die at home. The mother of a teen who died after many years of treatment for cystic fibrosis stated, "We did not know what questions to ask to get help at home. They said he would die in the hospital." The mother of a 15-year-ld boy who underwent treatment for cancer for nearly 10 years shared her frustrations: "I wish I didn't have to give my son shots every day. I wish I didn't have to take him to the germy emergency department when his immune system was low. I wish someone 'qualified' could have come and taken care of my son so my husband and I could have some alone time together. Even once would have been nice. I wish I didn't have to fight and beg the insurance people for every little thing, and the big things. I wish I didn't have to pay for PET scans with my credit card. I wish there had been someone I could call in the night when I had questions and was worried about my son's condition instead of having to take him once again to the emergency department. I wish my son could have died at home instead of in the hospital with tubes, IV lines, beeping machines and strangers. I wish there was grief support in this community."
The father of a child with Ewing sarcoma who lives nearly 100 miles from their children's hospital stated, "We had very little support at home and we made many visits back and forth to the hospital. We would have been able to help our son if we knew there was someone to call. We were afraid and he died in the hospital. We are grateful for all the care but wished there were a way to have him home."
Two of the families interviewed received adequate hospice care. Both children received Medi-Cal (California's Medicaid program) and California Children's Services (a state program that manages cases for children with special healthcare needs). Hospice care costs were paid for with foundation and donor funding despite the fact that the services saved the state and federal governments an enormous amount of money. The mother of a 14-year-old girl with a terminal heart condition shared the feelings of the entire family, "If we did not have hospice with us during this tragic time we also would feel like dying. I don't know how we could have survived her death without our hospice people helping us." The other family had a baby boy diagnosed with a chromosomal abnormality. They also expressed immense gratitude for their hospice team, saying "We were able to enjoy Joseph and make him comfortable every day we had him."
One of the families whose young daughter died of a brain tumor lost her hospice care when her parents decided to try additional life-prolonging and life-saving treatments. They shared, "It was confusing and disruptive to have to go back and forth. Every time we went back into the hospital, we had to drop our hospice service and then when she seemed to be 'dying again,' get back on. It caused more stress to an already unbearable situation."
Healthcare Providers' Interviews: Documenting the Need
Our coalition members told us that children and families were not the only ones suffering from the restricted access to hospice and palliative care services. For physicians, nurses, and other providers, these barriers can be a medical nightmare, a devastating "catch-22" that makes it virtually impossible to provide care that meets the psychosocial, emotional, and practical needs of families and children undergoing intensive treatment for life-threatening conditions. With help from a nurse consultant, we interviewed nearly 150 children's healthcare providers during 2006. We found that providers in all settings were frustrated with the current system of services. Providers expressed profound distress at not being able to offer timely, community-based hospice services while at the same time working to save or prolong a child's life. "It is unconscionable that we cannot provide needed services at such a difficult time for families." "I have a young patient right now whose family desperately needs the social support system that hospice would be able to provide, but this child gets equipment, medications and nursing care from a home health agency that will be discontinued if we were to switch to hospice services."
The providers confirmed our previous understanding that these eligibility requirements enforce an "all or nothing" approach in treating seriously ill children: either "we are trying for a cure" or "we are managing pain and providing support." This division causes confusion, anxiety, and stress among medical professionals and families and ultimately compromises care.
Family and Provider Surveys and Interviews: Conclusions
Family and provider responses confirmed that we must do more to help children manage their physical and emotional pain and help families cope with a multitude of practical, emotional, and spiritual issues. Based on our surveys and provider interviews, we found that families of children with life-threatening conditions have unique needs that are not being met under the current hospice eligibility regulations. The hospice and palliative care services would benefit families and need to be provided early in the treatment of a life-threatening condition, not just at the end of life. It is difficult, if not impossible, for families to give up treatment intended to cure their child's disease or prolong their life in order to qualify for palliative/hospice services. Therefore, we need a system that integrates palliative care (including hospice services) with curative treatment.
The trauma of a devastating diagnosis has an impact on providers who, under the current medical system, are often faced with impossible choices. Providers want to offer hope to their patients and families; destroying that hope as a condition for offering in-home nursing and emotional support is not acceptable. Providers understand the children's longing to go home from the hospital but must balance this with the difficulty of offering in-home pediatric nursing and other supports. Among the many profound problems with the federal hospice regulations is the impossibility of prognosticating life expectancy in children. Difficult to do even for adults at the end of a long life, children's illnesses and conditions are much less predictable. Some children live for years with the same disease or condition that ends another's life quickly. Upon enrollment into hospice, the child's name is dropped off the rolls for future clinical trials, which makes it nearly impossible to qualify for new and promising treatment protocols. Choosing to end treatment is a difficult decision for adults, but at least they make the decision for themselves. Children can't make their own decisions about continuing or stopping treatment, and parents and providers find this an impossible decision. This "Sophie's Choice" has no place in a compassionate healthcare system.
Pioneering Programs
The pediatric palliative care movement owes a great deal to a small group of pioneering programs that have modeled the importance and clinical benefit of providing concurrent hospice and palliative care services to children and their families. We made contact with and learned about four ground-breaking programs: the Butterfly Program in Colorado, Daniel's Care in Kentucky, the Pediatric Early Care program in Michigan, and Essential Care in New York. Table 1 shows details of these programs as well as the Partnership for Children, a program we developed in Central California, which is being used as a model for the new pediatric palliative care benefit and waiver in California. We identified many similarities in these five innovative programs, including system of reimbursement and a shared set of core values:
* Pain and symptom management: the child should be as symptom-free as possible
* Family-centered care: the unit of care is the child and family
* Collaboration with pediatric providers: programs show respect for the primary care provider and other providers caring for the child and family
* Sensitivity to culture-specific needs: the cultural background, concerns, and needs of the family are elicited, documented, and addressed; translation or bilingual services are available as needed
States Working to Reimburse Services
As a result of the pioneering programs, the Institute for Medicine Report (2002, printed in 2003: Field & Behrman, 2003), and a federal grant to provide technical assistance to states though the Children's Hospice International's Program for All-Inclusive Care for Children programs, there is a growing momentum to change the restrictive Medicaid hospice regulations. It seems that the federal government is open to this effort. In a 2005 press release, Health and Human Services Secretary Mike Leavitt expressed commitment to assisting states interested in waiving the hospice regulations by saying, "This is a step beyond traditional hospice rules, and the right thing to do for these most vulnerable children and their families." States with some type of public financing currently in place, albeit limited, include Florida, Washington, and Massachusetts. States working to develop a financing option include California, Colorado, Kentucky, Michigan, New York, Utah, and Massachusetts (Massachusetts has a one-time allocation and is considering a waiver). The state efforts are evolving rapidly; we intend to post updates on state efforts on our Web site. What follows is a brief summary of state approaches.
Federal Waivers
The Social Security Act, which governs the Medicaid program, permits states to request a waiver of federal regulations. Most of the states are working with a home and community-based services waiver request under Section 1915 of the Act. These waivers provide federal funds to Medicaid programs for home and community-based care for patients who would otherwise be in a medical institution, such as a nursing home or hospital. The waiver must be "cost neutral" for the federal government; that is, new benefit costs will not exceed the cost of care that would have been provided without the waiver. Florida currently has in place a section 1915(b) waiver covering children's hospice services. Colorado's section 1915(c) waiver was recently approved by the Centers for Medicare and Medicaid (CMS), and Utah's initial draft is pending review by the state's Medicaid Director. Other states are currently considering federal waivers to open access to hospice and palliative care services for children.
Florida: Partners in Care
In 2005, the Florida Medicaid program amended its existing 1915(b) waiver to create the first publicly financed program in the nation to support pediatric palliative care integrated with curative or life-prolonging therapies. Partners in Care (PIC) is administered by the Children's Medical Services Network, Florida's federal Title V program for children with special healthcare needs. Children must be diagnosed with a potentially life-threatening condition with a life expectancy of less than 21 years of age. Initial implementation was restricted to seven pilot sites; however, with the development of minimum standards for pediatric hospice programs, any hospice program approved by the state may participate. The PIC program gives professional staff of participating hospices 24 months from start-up to complete the modules in the National Hospice and Palliative Care Organization pediatric palliative care curriculum, the ELNEC (End-of-Life Nursing Education Consortium) pediatric palliative care curriculum, or any curriculum approved in advance by the PIC steering committee. As of January 2007, 230 children had enrolled in the PIC program.
Early Periodic, Screening, Diagnosis, and Treatment Benefit
Washington State took a different approach; its Pediatric Palliative Care benefit is available under certain Medicaid programs, with some children receiving services through EPSDT (Early, Periodic, Screening, Diagnosis, and Treatment program). EPSDT is a federally mandated program that requires states to screen and treat low-income children for a wide variety of conditions. Most states have integrated EPSDT with their Medicaid programs. Federal law requires each state to provide EPSDT-qualified children with the services they need to maintain and/or improve their health regardless of whether that service is part of the state's Medicaid benefit package. Washington State defined pediatric palliative care as a mandated service under EPSDT; using that program, it has been able to offer expanded palliative care and hospice services to children who might not otherwise qualify. Washington Department of Social and Health Services Health Recovery Services Administration, contracts with hospice/home health agencies and private payers. Most children in Washington State are covered under this arrangement. This model allows hospice agencies to provide comprehensive intermittent care early in the course of a child's treatment and concurrent with the child's ongoing curative or life-prolonging therapies. The program allows up to six pediatric palliative care contacts per client per month and may include care by a registered nurse, social worker, or various therapists. Children on Medicaid must be under 21 and have a life-limiting medical condition with complex needs that require case management and coordination of medical services. A full description of Washington State's program can be found in Washington Administrative Code 388-551-1800-1850 and at http://fortress.wa.gov/dshs/maa/download/BillingInstructions/HospiceServices_BI..
State Funding: The Massachusetts Health Reform Law 2006
This Massachusetts Health Reform Law included a pediatric initiative with a one-time $800,000 appropriation to pay for hospice services to children. The Department of Public Health recently selected 10 hospices to receive $55,000 in funding toward training, development, and implementation of an integrated pediatric palliative care program. The state sees itself as the "payer of last resort." Any costs for services not underwritten by the appropriation or reimbursed by private insurance become the responsibility of the hospice. The program will complement existing services and, the Department of Public Health assumes, most will be provided in the home. Children younger than 19 years old who are determined by a physician to have a potentially life-limiting illness are eligible to receive services. Admission does not preclude the child from receiving treatment or supportive therapies.
California's Path to Coverage
Working with the Children's Hospice and Palliative Care Coalition public policy committee members, consultants, and the California Department of Health Care Services, we explored the options for improving Medi-Cal coverage. Ultimately, DHCS determined that its preferred-and only-option was to secure a federal waiver. The Home and Community-Based Care Demonstration waiver (Section 1915(b)) seemed to be the best fit, although we had several concerns. A traditional 1915(b) waiver is restricted to children who need hospital or nursing home care, which conflicted with our goal of providing services over the course of the illness and not just at the end of life. We were delighted to learn about two recent federal policy changes. States can receive federal reimbursement for the provision of bereavement counseling, and states can set an eligibility threshold for children in these waivers that is less than the cost of equivalent institutional care. Cost neutrality calculations also can be based on EPSDT expenditures for these children and annualized expenditures for acute services. We hope that these changes will enable children to maintain waiver eligibility even when they are well enough to be cared for in the community.
In addition to restricting participation to children with fairly severe medical conditions, the demonstration waiver will be restricted to specific communities and providers. Although statewide provision of hospice care is our ultimate goal, we decided there are also advantages to piloting the benefit on a smaller scale and learning from that experience. A Medi-Cal waiver is granted for 3 years with the option to extend and expand it if the demonstration project is a success. While we liked the idea of ongoing fine tuning of the benefit, we worried about the ability of the state and our coalition members to focus on the waiver for years, maybe even decades.
Finally, attorneys for California DHCS stated that that before preparing and submitting a waiver, legislation needed to be passed and signed. This sounded almost impossible; the legislative session was well underway. Writing and passing a bill through both houses was a formidable undertaking, but we took a deep breath and plunged in. Every day, kids and families in our pilot hospice programs were living with unbearable realities and doing the impossible. We would do everything possible to make this happen for them.
AB1745: The Nick Snow Children's Hospice and Palliative Care Act
Our first task was to find expert help; fortunately, we were able to contract with governmental advocates for the California Children's Hospital Association, who guided us through the legislative process. One of our influential coalition members set up a meeting with the staff of Senate President Pro Tem, Don Perata, and Assemblywoman Wilma Chan. They agreed to sponsor our bill and even recruited another powerful colleague in the Senate, Senator Deborah Ortiz. State DHCS staff attended the meeting and agreed to be supportive. We alerted the Governor's office to the process. Over the weekend we worked on writing our dream bill. Through conference calls and e-mails, we carefully crafted children's eligibility criteria, defined the services that would be provided, and set out a timeline for submitting the waiver. Almost none of this detail ended up in the legislation, but instead Assembly Bill 1745 emerged from Legislative Counsel as a short procedural document, directing the California DHCS to draft and submit a federal waiver to establish models of care that demonstrate the efficacy and benefit of an integrated pediatric palliative care benefit package.
We decided to name the bill after one of our young patients, Nick Snow, who had recently died after bravely fighting neuroblastoma for 10 years. Nick was famous for having "flunked hospice" twice. After receiving hospice and palliative care at home, his emotional and physical conditions improved, which enabled him to undergo further curative treatment. Nick was a wonderful spokesperson for expanding access to care, telling everyone who would listen, "I don't understand why you should lose all this great support just because you want to live." The first committee hearing in the Senate was dramatic. Melissa Gilbert, actor, former president of the Screen Actors Guild, and a tireless advocate for children, gave a moving summary of the issues. She explained that between 10,000 and 16,000 California children and their families could benefit from this bill each year. Nick's mother, Shannon Snow, shared Nick's story and her family's experiences. It was an emotional, poignant presentation that brought tears to the eyes of many. After a few minor amendments, the billed passed out of Committee and then the Senate unanimously. After a wonderful Committee hearing in the House, we heard rumbles of resistance. Although we had thought we had enough "yes" votes, our coalition swung into action. Parents, including Nick's mom, Shannon, social workers, nurses, and physicians who work with critically ill children in their districts called the doubters and eloquently explained the need for the bill. The bill passed the Assembly unanimously in September 2006 (the final bill is on our Web site). The signing ceremony in the Governor's office was an experience beyond words; we savored every minute of the experience.
A Historic Moment for California's Children: Taking the Next Steps
In a little more than 5 years we have come a long way. From heartfelt vows to help children and families, we've created a coalition, received foundation and private funding, learned about model programs and states, delved into Medicaid regulations, and been thrilled with the unanimous passage and signing of the Nick Snow Bill, but we aren't looking back at our accomplishments. We are acutely aware of all that still needs to be done before children and families see a real difference. The waiver itself needs to be written and submitted, with hundreds of important details still to be hammered out. A crucial task will be educating families, nurses, doctors, hospices, and children's programs about the opportunity offered by the waiver. We are cheered by the process being adopted by the State DHCS staff. They have invited broad stakeholder participation in the design of the waiver and will be working closely with our coalition. They have established a Web site on which you can track California's progress: http://www.dhs.ca.gov/pcfh/cms/ppc/default.htm.
Implementation of the waiver could occur in early 2008 or it could take longer. We know it will happen. We know it will make a difference. We invite you to join us in this movement in whatever way feels right. You could learn about and advocate for improved children's services. You could support pilot programs and state efforts to expand access. Or maybe you will feel moved to dive in and start something new and beautiful!! The kids are counting on you!!
Acknowledgment
The work of the CHPCC has been generously supported by the California HealthCare Foundation, based in Oakland, CA. The photographs in this article were taken by Art Durand, Lori Butterworth, and Shannon Snow.
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