What is Palliative Care?
Palliative care takes place throughout a patient's illness and includes effectively managing symptoms, pain, and complications of treatment and disease. It includes psychosocial and practical care of a patient and family as well as the care of dying patients, and providing timely and accurate information and support. Palliative care is not limited to those thought to be dying and can be provided simultaneously with curative or life-prolonging treatments.

Improving Palliative Care: Reports from the Institute of Medicine
Public attention has increased to policies affecting the continuum of palliative care for children and their families with the publication of three reports from the Institute of Medicine (IOM). The IOM documents specifically note that children with cancer often do not receive adequate symptom control, especially for pain at the end of life.

Approaching Death: Improving Care at the End of Life (1997)
Approaching Death offers a model of what constitutes good care for the dying and proposes recommendations that address specific barriers to achieving good care. The report emphasizes pairing physical, psychological, spiritual, and practical care strategies to the patient's values and circumstances. It also examines the role of interdisciplinary teams and managed care and proposes how health professionals can be better prepared to care for dying patients. Approaching Death offers perspectives on quality measurement and improvement, the role of practice guidelines, cost concerns, and legal issues.

Building on work in this report, the IOM has issued comprehensive recommendations to improve palliative and end-of-life care for children.

Improving Palliative Care for Cancer (2001)
Continuity of care from hospital to hospice is particularly needed to enable families to continue working with the same personnel who were care for a child throughout the illness. Joanne Hilden, MD, author of the chapter on pediatric issues, argues that multidisciplinary teams are especially important and are able to offer a continuum of care from the hospital to hospice.

Reimbursement poses barriers to continuity of care, since it currently does not cover costs associated with pediatric end-of-life care or physician time spent counseling families and overseeing the transition to hospice care. Medicaid and private insurers are urged to provide healthcare professionals with adequate compensation to meet the special needs and circumstances of dying children.

The 2001 report also challenges traditional cultural avoidance of open discussion of dying and presses for comprehensive research and education about palliative care for cancer patients. The National Cancer Institute (NCI) is urged to designate certain cancer centers as centers of excellence in research and delivery of palliative care.

When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families (2002)
This report further examines the specific needs of children with life-threatening conditions and those of their families and explores the benefits of combining physical, emotional, spiritual, and practical care.

When Children Die recommends the collaboration of professionals and families to develop comprehensive care guidelines for dying children and educational resources about pediatric palliative and end of life care. It further suggests that children should be involved in their own treatment decisions and emphasizes the importance of supportive services for bereaved families.

For more information on the Institute of Medicine and free access to the IOM reports, visit www.iom.edu.