Decision-making and gastrostomy tube feeding in children with neurologic impairment: Engaging effectively with families

Question 1

What are the benefits if a G-tube?

Answer 1

• improved nutritional status
• decreased caregiver worry about nutrition
• reduced need for hospitalization and antibiotics for chest infection
• decreased feeding times
• ease of medication administration
• improvement in caregiver quality of life
• Parents described: positive benefits for child’s wt gain and happiness, caregiver quality of life, family flexibility

Question 2

What are the short term risks of G-tube insertion?

Answer 2

peritonitis (2% of cases), bleeding, infection, anesthesia-related problems, abdominal organ puncture, perioperative death

Question 3

What are the long term risks of G-tube insertion?

Answer 3

• tube malfunction (blockage, dislodgement, breakage)
• issues with stoma (infection, bleeding, irritation)
• worsening GERD

Question 4

What is a decisional conflict?

G-tube statement

Answer 4

• Decisional conflict can occur when trying to choose one course among competing options
• more likely when choice involves risk, uncertainty about outcome, feelings of loss or regret, or when choice challenges personal values

Question 5

What are the 3 recommendations for G-tube decision making in neurologically impaired patients?

Answer 5

1. Shared-decision making - exchange info with families about benefits, risks, impacts
2. Conversations and approaches - discuss family’s context, broad coals, values, preferences
3. Steps for clinician toward G-tube decisions:
   - build decision-making partnership
   - adequate time for discussions
   - clarify goals of G-tube feeding
   - be clear about risks and benefits
   - elicit family values and preferences
   - be sensitive
   - provide concrete examples of how G-tube feeding can impact
   - engage extended family members in discussion
   - help parents meet & share experiences with other families