Pediatrics - ProfessionalsThere is growing empirical evidence that the health care system is failing children and families, when they are confronted by a life-threatening illness. Too many children undergo painful procedures and suffer from the symptoms of advancing disease without adequate relief, despite the fact that modern medicine has the means to relieve their pain and improve most symptoms. Families of gravely ill children can feel abandoned and overwhelmed, often suffering emotional and sometimes financial consequences for years to come. Social supports to children and families before and after death are woefully inadequate, and health care professionals themselves are often left without emotional support for the difficult work they do. In their training, physicians and nurses have received virtually no opportunities to practice the skills necessary for communicating effectively with dying children and their families. Practicing health care professionals also lack guidance on how best to manage the conflicting goals and values that can arise in difficult cases. Such conflicts are made all the more challenging by the broad cultural and religious diversity represented in the U.S. population. Moreover, while there is an ongoing national effort to improve palliative care among adult patients, very little has been done so far in the United States on behalf of children and their families.
Palliative care for children seeks to enhance the quality of life of the child with a life-threatening illness from the time of diagnosis until death (or cure). Children benefit from palliative care throughout the course of their illness. Psychological, social, spiritual, and cultural issues need to be addressed during a child’s illness and at the end-of-life. This includes relief of symptoms (e.g., pain, dyspnea) and conditions (e.g., loneliness) that distress and detract from the child's enjoyment of life. There is also an effort in palliative care to ensure that bereaved families are able to remain functional and intact (American Academy of Pediatrics [AAP], 2000).
“An ideal pediatric palliative care program will address the needs of the child, family and larger community. Care will be delivered in the home, hospice, hospital or ICU. The program elements can be tailored to meet the current needs of the child and family, with elements being added or deleted as the child’s condition changes. Implementation of the program should not be dependent on forgoing other elements of care that are of value, nor contingent upon a certain prognosis of the time of death. .” Children’s International Project on Palliative/Hospice Services (ChIPPS), NHPCO, A call for Change: Recommendations to Improve the Care of Children Living with Life Threatening Conditions; Alexandria, VA, June 200
The AAP has identified minimum standards for pediatric palliative care. These include: easy transition between health care settings, including one consistent caregiver; availability of palliative care at all times; and the availability of an interdisciplinary team to address the physical, psychosocial, emotional, and spiritual needs of the child and family (AAP, 2000).
There are resources available to assist the professionals interested in learning more about providing pediatric palliative care. A few of these resources are listed below:
• When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families
• CompassionNet : A pediatric palliative care program in the community
• Initiative for Pediatric Palliative Care
• Children International Project on Palliative/Hospice Services (ChIPPS)
• Pediatric Equianalgesic Table, 2012