Pediatric end-of-life improvements sought

IOM committee begins deliberations

A new Institute of Medicine (IOM) committee is seeking ways to pay for end-of-life care services for dying children, including possible revisions of the current federal reimbursement regulations.

"The whole problem of reimbursing for children who are in the dying phase of their disease or need palliative care is a real issue," says committee Chairman Richard E. Behrman, MD, JD. Reimbursement is only one of the items on the panel’s agenda, says Behrman, senior vice president for medical affairs at the Lucile Packard Foundation for Children’s Health and clinical professor of pediatrics at Stanford University and the University of California, San Francisco.

The project, called Challenges of Providing End-of-Life Care for Children and Families, will study all the factors that influence pediatric end-of-life care. "Our objective is to provide a comprehensive look at what we know and don’t know about care for dying children, and what we know about good care that we don’t use," says Marilyn Field, PhD, senior IOM program officer and study director for the project.

The committee isn’t making an explicit point-by-point comparison between end-of-life care for children and adults, but will explore certain parallels. "We’re very interested in getting the attention of the critical care community," Field says.

The committee will investigate the extent to which children are admitted to ICUs with a prognosis that death is virtually certain. "We’re also looking at the kinds of communication that happen with parents, and when the physician and parents understand that survival isn’t expected," she says.

Accidents are the most common cause of pediatric death, and many of these injuries bring children into pediatric critical care units. "The situation appears to be that prognosis for children is often more difficult," Field says. "Their physiology is different, they’re more resilient, the major causes of death are different, so it appears they are not as likely to fit the hospice care definition used by Medicare."

Field observes that the HCFA "six-months-before-death" rule for hospice eligibility that allows reimbursement for palliative care is extremely difficult for critical care physicians to apply. Because predicting life duration is tricky for any patient, even the elderly, many patients are unable to benefit from hospice-type services.

"When the patient is a child, the situation becomes more complicated," Field says, "because parents are often unwilling to completely forgo curative or life-extending care, which is a reimbursement condition in most Medicaid programs."

The study group aims to develop recommendations for increasing access to compassionate and effective care for dying children and their families. The group’s work is sponsored by the National Institute of Nursing Research, the Ryan White Program of the Health Resources and Services Administration (U.S. Department of Health and Human Services), and the Open Society Institute.

As presently defined, the committee’s charges include:

• describing the major causes of death for children, sites of death, and differences in the dying process for different causes of death;

• assessing the state of knowledge about clinical, behavioral, cultural, organizational, legal, and other important aspects of end-of-life care for children and their families;

• considering methods for measuring care outcomes, determining family and child/patient preferences, communicating information, resolving conflicts, and assessing end-of-life care as experienced by children and their families;

• examining the availability, evidence base, and usefulness of practice guidelines for clinicians who care for dying children;

• proposing a research and action agenda to strengthen the scope and application of the knowledge base for providing effective and compassionate care for dying children and their families.

The committee plans to hold a public meeting in September. "We expect to invite testimony and statements of views from interested organizations," Field says. Written statements from individuals may not receive committee responses due to staff and time constraints, but they can be submitted to: Challenges of Providing End-of-Life Care for Children and Families Project, 2101 Constitution Ave. NW, Washington, DC 20418. Telephone: (202) 334-2310.