Two pilot programs would test the concept
Two Ohio lawmakers want to see palliative care become the standard for dying children in the United States. A House bill was introduced in September by U.S. Rep. Deborah Pryce, R-OH. The bill is also co-sponsored in the Senate by Sen. Mike DeWine, R-OH. The bill, introduced Sept. 18, would expand palliative care services for terminally ill children and their families through grants, research projects, and two pilot programs that would provide treatment and counseling. The palliative care initiative would cost $40 million a year for five years and is expected to receive bipartisan support. The two pilot programs would help lawmakers decide whether to include palliative care as a Medicare benefit and whether to require private health insurance plans to do the same.
Parents caring for an ill child must choose between continuing regular treatment and accepting hospice assistance under Medicare rules, which are mirrored by state Medicaid rules that cover children’s health care services. Current regulations allow hospice care for patients with six months or less to live, on the condition that patients forgo all curative care. This means parents of children who need palliative care must give up on the chance of recovery.
"This limits the services children can access, and it’s just not right," says Pryce, whose 9-year-old daughter died of cancer in 1999. About one million children are living with life-threatening conditions, and about 55,000 die each year, according to the National Association of Children’s Hospitals.
Last year, the Institute of Medicine (IOM) issued a report calling for better care of dying children, including the removal of current regulations that require parents to choose between palliative care and curative care. The report concluded that pediatric palliative care is either missing or woefully substandard because of poor training, conflicting parental goals, cultural barriers, and insurance regulations that discourage palliative care. It also called for demonstration projects to lead the way in finding innovative ways to address the problem.
Among the hospice-specific recommendations in the IOM report are the following:
• Children’s hospitals, hospices, home health agencies, and other organizations that care for seriously ill or injured children should collaborate to assign specific responsibilities for implementing clinical and administrative protocols and procedures for palliative, end-of-life, and bereavement care. In addition to supporting competent clinical services, protocols should promote the coordination and continuity of care and the timely flow of information among caregivers and within and among care sites including hospitals, family homes, residential care facilities, and injury scenes.
• Children’s hospitals, hospices with established pediatric programs, and other institutions that care for children with fatal or potentially fatal medical conditions should work with professional societies and other resources to assist clinicians and families in local and outlying communities and rural areas.
• Children’s hospitals and other hospitals that care for dying children should work with hospices and other relevant community organizations to develop and implement protocols and procedures for culturally sensitive bereavement services, define bereavement support roles for hospital-based and out-of-hospital personnel, and meet bereavement needs of professionals who assist dying children and their families.
• Public and private insurers should restructure hospice benefits to add pediatric hospice care to the services reimbursed by Medicaid and other public insurance programs as well as by private health plans, eliminate eligibility restrictions related to life expectancy in favor of criteria based on diagnosis and severity of illness, drop rules requiring children to forgo curative or life-prolonging care, and include outlier payments for exceptionally costly hospice patients.
• Medicaid and private insurers’ policies restricting benefits for other palliative services related to a child’s life-threatening medical condition should be modified to remove obstacles to care.
Two Ohio lawmakers want to see palliative care become the standard for dying children in the United States.
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