Care Guidelines for Terminally Ill Children

For children living with life-threatening or terminal illnesses, medical professionals are obligated to ensure that suffering is minimized and medical technology is used only when the benefit for the child outweighs the burden.

As children's needs are often significantly different that those of adults, the American Academy of Pediatrics has outlined recommendations for providing palliative care for children.

The recommendations include:

  • The development of widely available palliative care and respite programs to alleviate suffering and to promote the welfare of children and their families living with life-threatening or terminal conditions.
  • The implementation of a comprehensive palliative care program from the time a child is diagnosed with a life-threatening or terminal condition to complement life-prolonging care, as well as assist if it becomes clear that the child will not survive.
  • Changes in the regulation of palliative care to allow broader eligibility criteria, equitable reimbursement of simultaneous life-prolonging and palliative care, as well as respite care and other therapies beyond those currently mandated.
  • An effort by all general and subspecialty pediatricians, family physicians, pain specialists and pediatric surgeons to familiarize themselves with palliative care practices for children. These should include palliative medicine, communication skills and grief counseling.
  • An increase in support for research into effective pediatric palliative care. The pharmaceutical industry must provide labeling information for symptom-relief medications applicable to children. The recommendations also reiterate the AAP's continued opposition to physician-assisted suicide or euthanasia for children.

The American Academy of Pediatrics is an organization of 55,000 primary care pediatricians, pediatric medical subspecialists and pediatric surgical specialists dedicated to the health, safety and well-being of infants, children, adolescents and young adults.

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