A model for pediatric care struggles on in DC region

Funding and policy changes are needed

The concept of providing customized care for dying children and their families is a working reality in the northern Virginia-Washington, DC, area, where The Hospices of the National Capital Region are using what they call the CARICEL program, which is short for Caring for Infants and Children with Life Threatening Illness.

According to David J. English, president and chief executive officer of The Hospices of the National Capital Region, CARICEL focuses on:

  • patient comfort;
  • integrity of the family;
  • skilled use of aggressive palliative care;
  • extensive support for family, friends, and all who care for the child;
  • the belief that there is hope every day, even when confronting a serious illness.

Just as pediatric palliative care experts advise, children are accepted into the CARICEL program regardless of the kinds of treatments the child and his or her parents are pursuing. Like many hospices around the country, The Hospices experience shortened length of service with their adult patients, making it difficult to manage the financial end of patient care. Caring for dying children is an even more expensive proposition because it requires more intense care and expertise, which can be costly to acquire.

Large programs can absorb costs

"Our program is unique because of its size. We care for more than 600 adult and pediatric patients and their families each day," says English. Though the decreasing average length of stay in hospice makes care for any hospice patient more expensive, "large programs such as ours can better afford to absorb higher pediatric costs."

English points to the following reasons why the cost of providing pediatric care is greater than the cost of providing adult care:

  • Neither the Medicaid hospice benefit nor typical commercial insurance cover the true daily cost of providing hospice care to adults, let alone the higher costs of pediatric services.
  • Pediatric patients often require more frequent home visits, either for strictly medical reasons or for the family’s emotional support.
  • Families of pediatric patients usually need more support from nurses and physicians than families of adult patients.
  • There are fewer pediatric patients, so the per patient cost of maintaining a pediatric team is higher than an adult hospice team.
  • The per unit cost of pediatric equipment often is higher because it is ordered in smaller lots and less frequently.

English says the Hospice of Northern Virginia is able to maintain its dedicated pediatric team in part due to community financial support. Donations allow the hospice to provide services to people who otherwise could not afford the care the hospice provides.

Currently, CARICEL is subsidized by $300,000 in community support per year. But if the hospice were to operate its pediatric palliative care program at full capacity, English estimates that his organization would need more than $1 million a year.

"Because of lack of adequate reimbursement sources, we are not heavily promoting our program and therefore keeping our growth slow," English says. "Today we are caring for between seven to 10 patients per day. The need is likely triple that number in northern Virginia alone. Reimbursement sources are limited and restrictive, although we are often successful in negotiating with many insurance companies and managed care organizations for what frequently is out of policy coverage. However, most families do not have adequate insurance due to copayments or caps on coverage. Currently, Medicaid provides a hospice Medicaid benefit, but [patients] must give up Medicaid reimbursement for curative care and must have a prognosis of six months or less. Those are two almost insurmountable barriers to Medicaid coverage for those who qualify for Medicaid."

Legal and ethical issues

To increase access to pediatric palliative care, the National Hospice and Palliative Care Organization (NHPCO) and the Children’s International Project on Palliative/Hospice Services (ChIPPS), both in Alexandria, VA, contend that a number of legal and ethical issues must be addressed. Among them are the creation of laws and policies that would provide more parental resources. For example, the two organizations cite the need for Good Samaritan legislation to enable parent-to-parent networking and respite referrals by health care institutions and individuals.

Other areas include:

  • extending the mature minor doctrine to children with capacity for medical decision-making, regardless of age;
  • development of tools to assess minors’ capacity to participate in decision-making;
  • the honoring of do-not-resuscitate orders in schools and other public and non-hospital settings, including the emergency medical system.

More research into pediatric palliative care still is needed, the NHPCO acknowledges. As with the hospice industry in general, outcome measures should be used so the industry can move away from extrapolating child data from adult data. Research should build on evidence that already exists, be innovative, and fill existing gaps in knowledge and applied practice, the NHPCO says.

Among the issues that deserve immediate attention are early identification of children who can benefit from palliative care; the utility of care coordinators to orchestrate care of the child; the effectiveness of parent education tools to ensure informed consent; the effectiveness of sibling interventions to improve bereavement outcomes; and the safety and effectiveness of treatment and prevention of pain and other symptoms.