COMMENTARY FROM ANC ETHICS EDITOR, ANITA CATLIN
Dr Deborah Bruns reports here on 13 long-living children with Trisomy 18. The children/adults ranged from 8 to 33 years in age. Bruns says that neonatal providers and neonatal nurses should "provide all possible interventions to treat medical conditions and to work with parents to offer the best care available." She also states that neonatal outcomes for this group were "largely positive."
As a perinatal researcher, I am concerned about this advice. Bruns says that these 8- to 33-year-olds "function at infant to toddler level, ambulate with a walker for short distances but are mostly in wheelchairs, communicate through facial expressions and vocalizations, and are fed via gastrostomy feedings."
Presently women carrying a fetus with Trisomy 18 are offered several choices.1 They may decide to terminate the pregnancy, and many do. If they continue with the pregnancy, the family members are given the opportunity to design their own birth plan. This may include palliative or comfort care right in the delivery room, with warmth, holding, and loving, but not resuscitating should that be needed. About 60% of infants born with Trisomy 18 die in the hospital after birth.2 Parents would be counseled that the infant has a lethal condition and that it would be an option to allow a natural death, well supported by the interdisciplinary team in the palliative care model.
Another option is supportive care for the infant, with transfer home with hospice. A stunning Youtube video depicts this form of care and is both memorable and instructive. The video shows how a family provides loving care of a baby at home without technological or surgical interventions (http://www.youtube.com/watch?v/ToNWquoXqJI).
If parents state that they want to fully and technologically intervene in the baby's course at birth, I imagine that this would not be refused. Trisomy infants may have surgical needs in their heart, palate, trachea, esophagus, limbs, hands, etc. System by system could undergo intervention; to my knowledge, the infant-level intelligence would not change.
As nursing advocates for both the child and the family, a choice like this gives us much to think about. It is essential to both educate and support families about the future trajectory of such a choice. The following are questions I would want to ask:
* Will the infant suffer when undergoing these interventions?
* If placed on ventilatory support, will weaning occur?
* How many hospitalizations will be necessary?
* Should the treatments escalate at each point of organ dysfunction?
* Is this in the infant's best interest?
* How will this affect the family?
* Where will the family have to live?
* Will parents be able to work or perform normal daily activities?
* How many surgeries will be necessary?
* How much equipment will be needed at home?
* How will they pay for surgeries, durable equipment, and home care?
* What will the effect be on other children in the family?
* Will all decisions have the ability to be revisited?
* Who will care for the child/adult when the parents are too old to do so?
* What will happen when the parents die?
Bruns is correct that we have the technological ability to save these infants. This leads us to the ethically hard question: Because we can, does this mean we should?
We at Advances in Neonatal Care have published Bruns' article to continue that dialogue.
References