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:
- the situation or perception of the complexity of the situation.
- the plan of care and the ability to provide and participate in care.
- the appropriate use of medications, therapies, equipment and supplies.
- satisfaction with the process of providing care and their overall situation.
- perception of the level of stress.
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Pediatric Hospice Palliative Care: Guiding Principles and Norms of Practice © Canadian Hospice Palliative Care Association, Ottawa, Ontario, Canada, 2006