Palliative care for children
UB part of project developing model for terminally ill kids

By PATRICIA DONOVAN
Contributing Editor

In response to concerns that the American health-care system offers almost no palliative care for terminally ill children, UB psychologist James Donnelly is conducting an assessment of the palliative-care needs of terminally ill children and their parents.

The needs assessment will be conducted, in part, through brainstorming sessions over the World Wide Web between palliative-care workers, medical personnel and patients' families.

"The need is very great," says Donnelly, an assistant professor in the Department of Counseling, School and Educational Psychology in the Graduate School of Education, and research associate professor in the Department of Psychology in the College of Arts and Sciences.

"Many terminally ill children and their families have to rely on expensive hospital intensive-care units or traditional hospice home health-care services, neither of which are able to offer the all-inclusive emotional, medical and psychological support they need."

A successful palliative-care program, he says, can provide effective medical assistance and help the family prepare for the future, frequently with the aid of someone who already has been through the process and can anticipate upcoming challenges.

Advocates for the terminally ill, such as Children's Hospice International, say that the fact that there are so few pediatric palliative-care programs seriously reduces the quality of life for many patients and families during a time of acute emotional distress. Coupled with the financial difficulty and communication problems common during such times, this often leads to great family stress and even breakdown.

Donnelly is a member of a partnership involving UB, the Center for Hospice and Palliative Care, the Hospice and Palliative Care Association of New York State and the New York State Department of Health.

The group obtained demonstration-project funding from the federal government to conduct the needs assessment, develop instruments to measure palliative-care program outcomes, document patterns of communication about end-of-life topics and develop an application for Medicaid waiver for children with life-limiting illnesses.

The demonstration project builds on the pioneering and nationally recognized Essential Care Program of Western New York's Center for Hospice and Palliative Care. The grant is beginning the second year of funding and a third year's funding is anticipated for 2003.

Before pediatric palliative-care programs can be established on a large scale, the needs of those to be served must be formally assessed and successful program models developed that can help guide the decision-making process of those working in this field.

The needs model, along with outcome and cost assessments, then may become the basis for a testable theory of pediatric palliative-care programs.

The team, which includes three doctoral students in the Department of Counseling, School and Educational Psychology—Chris Mesmer, Kyle Cieply and Carrie Thurn—also is collaborating with the Center for Children's Health Outcomes in San Diego on the development of measures of child and family quality of life. Donnelly points out that although there are some good assessment measures for adult palliative-care programs, there is no assessment standard for pediatric palliative care.

To determine how to improve family-patient-staff communication, they will look at the nature of family-staff interactions recorded in patient charts and relate these to records made later that describe how family members cope with end-of-life issues.

This information, says Donnelly, may suggest whether there are relationships between the content and timing of end-of-life conversations and long-term outcomes for families. For educational purposes, a series of video case studies involving interviews with families in Buffalo's Essential Care Program will be produced with the assistance of WNED-TV, Buffalo's PBS affiliate, and the Media Department of the Western New York Hospice and Palliative Care.

Donnelly and his colleagues have written a report on their work for a forthcoming volume on the subject to be published by the Institute of Medicine, one of the National Academies.

Those lobbying on behalf of pediatric palliative-care programs are concerned with the fact that, as things now stand, palliative care, because it is not "curative," is defined by insurers as a service available only in the last few weeks or months of life.

Donnelly says that in the case of young patients with cancer, cystic fibrosis, muscular dystrophy and other debilitating illnesses, long-term or repeated episodes of palliative-type care may be necessary.

"These illnesses can go on for years and years," he points out, "and often involve a series of acute phases in which patients are critically ill and in serious medical crisis. The child may survive a number of these crises before succumbing to their disease. Because the outcome of each episode is uncertain, however, they are extremely difficult for both patient and family to weather."

Episodic palliative care would provide badly needed assistance to these stressed families, he says, noting that right now, most of them cannot receive such services until years after their need is established.

Donnelly credits the intense lobbying of UB alumnus Donald Schumacher, CEO of the Center for Hospice and Palliative Care and an instructor in UB's graduate program in counseling, school and educational psychology, for financially stabilizing Buffalo's Essential Care Program, and for the new national emphasis on palliative care for terminally ill children.