Ethical Considerations in Pediatric Palliative Care

  • Philosophy is to provide optimal comfort and quality of life, and sustain hope and family connection despite the likelihood of death.
  • Palliative care goals and life-prolonging goals can be pursued simultaneously.
  • When a child dies from a sudden or prolonged illness, bereaved parents and siblings benefit from continued emotional support.

Ethical discussions may include:

  • the child’s ability to consent to treatment.
  • the amount/type of information that should be shared with a child (i.e., truth telling).
  • family-focused decision making.
  • providing adequate pain control and ensuring that children are not under-treated because of ethical confusion, fear of the law or ignorance.
  • decisions to forego potentially life-sustaining treatments or to withdraw life support.

Things to Consider

  • Age-appropriate communication with children
  • Addressing the concerns of the family, as well as the child
  • Children respond differently to therapies and drugs
  • Many life-threatening conditions that affect children are rare and only affect children
  • Many of the illnesses are familial and may affect more than one child in the family
  • The diseases are often unpredictable in terms of prognosis, and children may require years of caregiving
  • Siblings have unique needs during, and after, a child’s death.

During each therapeutic encounter…    

The formal caregiver assesses and reinforces the child’s, family’s and informal caregiver’s understanding of:

  1. the situation or perception of the complexity of the situation.
  2. the plan of care and the ability to provide and participate in care.
  3. the appropriate use of medications, therapies, equipment and supplies.
  4. satisfaction with the process of providing care and their overall situation.
  5. perception of the level of stress.

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PDF – Potential Causes of Pain in Non-Verbal Older Adults

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Pediatric Hospice Palliative Care: Guiding Principles and Norms of Practice © Canadian Hospice Palliative Care Association, Ottawa, Ontario, Canada, 2006