NUTRITION SUPPORT AND ETHICS
Nutrition support in pediatrics may be oral feeding, enteral with nasogastric tubes or gastrostomy feeding, or parenteral nutrition. The major goals are to achieve and maintain desirable weight, to prevent or correct nutritional deficiencies and improve the quality of life and provide comfort for chronically or terminally – ill children. On the other hand, there are complications of assisted nutrition devices and interventions in children (sepsis, thrombosis, skin breakdown, leakage, GI dysfunction). PSPGN understands that limits to, or withdrawal of medical interventions – including assisted nutrition, present with ethical and legal issues.
The traditional criteria for providing Life Support Medical Treatment (LSMT) is therapeutic benefit while futility and burdensomeness should be established for legitimate refusal. Any treatment such as nutrition support that does what it is designed to do is therapeutically beneficial and so is not futile.
Decision-making standards in children warrant that the parents or surrogate considers the ‘best interest’ of the child.
PSPGN as advocates for life and children rejects the “quality of life” ethic, which asserts that some lives are worth less. We shall respect the sanctity of life and explore broader notions of benefit and futility. What are crucial are not a qualitative judgment about the value of the child’s life, but a judgment about the value of nutrition support in the life of a particular patient.
Nutrition and Hydration as Life Support Medical Treatment
“…Although Life Support Medical Treatment (LSMT) includes the dramatic measures of contemporary medicine such as organ transplantation, respirators, kidney (dialysis)machines, and vasoactive drugs, it also includes less technically demanding measures such as antibiotics, insulin, chemotherapy, and nutrition and hydration provided intravenously or by the tube. “1
Subsets in Society
Within the society, there are subsets with their own rules and laws.
- Public ethics say that naso gastric feeding is medical therapy, an extraordinary or disproportionate medical intervention, not a basic intervention that can be withheld if deemed futile and /or refused by the patient/surrogate.
- Some individuals or churches may also believe that feeding; no matter how it is delivered is an ordinary or proportionate means that must be always provided.
PSPGN, consisting of physician experts who are consulted for nutrition support in difficult cases would want to participate in society to enrich the rules and laws and not to override them.
Nutrition and Hydration CONSTITUTES ORDINARY/ Proportionate Care
Nutrition support that does what it is designed to do is therapeutically beneficial and so is not futile.
As Nutrition support provides benefits; if not burdensome, then it shall always be provided
What to do if a terminally –ILL CHILD is not feeding
- Maintain comunication with the patient and Family
- Be aware of the child’s signs/symptoms and the time frame over which these will likely appear
- Respect differing perspectives among the family and staff
- Shift focus of care to comfort (palliative care team, hospice, home health)
- Provide a supportive environment.
- Support the psychological and spiritual NEEDS OF the patient and family through the consultants and the community
- Provide symptom management (FINGER FEEDS, suckling, skin and mouth care, pharmacologic and non-pharmacologic care)