The research base in pediatric oncology for dying children is deficient in every area, directly affecting the quality of the care that children receive. In addition to the important work of developing and testing new treatments to reduce the number of children who face death from cancer, research must focus on the children who do, in fact, die. Results of research in the following areas could be of direct benefit in the treatment of dying children.
Describe current end-of-life care practice patterns. The descriptive information available for the care of dying children is inadequate (e.g., very little information on the use of hospice, the use of palliative care teams or pain services, incidence of death at home versus the hospital or other inpatient facility, use of advance directives or DNR orders and the duration these are in effect before death, use of psychosocial multidisciplinary teams, and patient and family satisfaction with these services).
Create tools to assess the quality of pediatric end-of-life care. A single instrument (questionnaire) has been validated for pediatrics, consisting of a two-hour interview, which is not practical for broad use (Wolfe, 2000). New instruments (either completely new or adapted from adult models) for widespread use are needed.
Evaluate pediatric models for provider-patient-family communication. Research is needed to define communication models that prevent psychological harm to parents and children and that result in a sense of control and efficacy for parents. Research questions include how to communicate bad news effectively, how to discuss withdrawal of therapies, how to teach what to expect as their child dies, how to communicate goals of care that incorporate both curative and palliative therapies without a feeling of “giving up,” and how to facilitate communication across treatment sites.
Create and evaluate comprehensive parent educational materials, including, for example, what to expect during withdrawal of support, what will be experienced during an expected death at home, and how to advocate for symptom control.
Evaluate models of decisionmaking that are family centered, and emphasize the involvement of the child.
Evaluate models of care that address the needs of siblings.
Investigate the barriers to optimal symptom control in pediatric oncology practice.
Develop and validate symptom (and suffering) assessment tools for the pediatric population to be used for both research and treatment.