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vidual changes. Improvement will also require more clinical and health services research to fill gaps in our knowledge of what constitutes the “best” palliative, end-of-life, and bereavement care for children and families with differing needs, values, and circumstances.
Viewed broadly, palliative care seeks to prevent or relieve the physical and emotional distress produced by a life-threatening medical condition or its treatment, to help patients with such conditions and their families live as normally as possible, and to provide them with timely and accurate information and support in decisionmaking. Such care and assistance is not limited to people thought to be dying and can be provided concurrently with curative or life-prolonging treatments. End-of-life care focuses on preparing for an anticipated death (e.g., discussing in advance the use of life-support technologies in case of cardiac arrest or other crises or arranging a last family trip) and managing the end stage of a fatal medical condition (e.g., removing a breathing tube or adjusting symptom management to reflect changing physiology as death approaches). Together, palliative and end-of-life care also promote clear, culturally sensitive communication that assists patients and families in understanding the diagnosis, prognosis, and treatment options, including their potential benefits and burdens.
The death of a child will never be easy to accept, but health care professionals, insurers, educators, policymakers, and others can do more to spare children and families from preventable suffering. Although research is needed to assess systematically the strengths and limitations of different care strategies, promising models exist now in programs being undertaken by children’s hospitals, hospices, educational institutions, and other organizations. Some of these programs focus on better preparing pediatricians and other child health specialists to understand and routinely apply the principles of palliative and end-of-life care in their practice. For example, some pediatric residency review committees have added requirements for training in aspects of palliative, end-of-life, and bereavement care. Other innovative programs aim to identify and reform specific clinical, organizational, and financing policies and practices that contribute to care that is ineffective, unreliable, fragmented, or financially out of reach. The federal government is sponsoring several demonstration projects to test modifications in current Medicaid policies to improve care coordination and access, and some private health plans are also making coverage of hospice and palliative care for children more flexible.
This report builds on two earlier Institute of Medicine (IOM) reports— Approaching Death: Improving Care at the End of Life (1997) and Improving Palliative Care for Cancer (2001). It continues their arguments that medical and other support for people with fatal or potentially fatal conditions often falls short of what is reasonably, if not simply, attainable. Specifically, this report stresses the following themes: