Ethics in the Neonatal
Intensive Care Unit
by Deborah K. Davies, Ph.D.
As a psychologist specializing in perinatal bereavement and ethical issues in the NICU, I have worked with and written about many parents who decided to turn away from aggressive medical intervention.
On the danger of drawing lines:
Some people argue that we should draw a line whereby babies above the line
are resuscitated and babies below are not. This is an attempt to make
situations black and white in order to avoid gray areas and the attending
difficult decisions. But drawing lines increases errors because it erases
judgements. Any line will never be reasonable for every baby. Every
situation is unique. Difficult decisions require delicate judgements, not
lines drawn in an attempt to make these decisions easy. They will never be
easy. They shouldn't be easy.
On the absurdity of slippery slope arguments:
For many babies, life or death decisions don't arise because there's no
question about what is best. When a baby has a significant chance for
healthy survival, then initiating and continuing medical intervention is
unquestionably best for the baby. Likewise, when the prognosis is clearly
grim, it is reasonable for docs to gently inform the parents that medical
intervention would hold no benefit for the baby. In both of these
situations, the way to go is clear; only one option is reasonable. There is
no decision to make. The slippery slope argument that we should not let
parents make decisions because "Next thing you know, they'll be denying
medical intervention to a baby who is missing a thumb", is absurd. Or the
opposite, that "Soon they'll be demanding that we try to resuscitate embryos"
is equally absurd. Not every situation poses a choice between options or
demands decisions to be made.
But there is a gray area, where the best option isn't clear, and these
difficult decisions require thoughtful, heartfelt judgements by the parents.
On why parents should make life & death decisions in the NICU:
When the prognosis is uncertain, and particularly when it is most likely
to be dismal at best, questions (should) arise among medical staff - "Do we
resuscitate or not?" or "Do we continue artificial life support or not?" In
these precarious cases, where the prognosis or treatment outcomes are
uncertain, when there are options and the best option isn't clear, PARENTS
should be the primary decision-makers. If medical staff had all the answers
or could accurately predict the future, then I'd say let them decide. But
they don't and they can't. Parents don't and can't either, but when informed
and given time to ponder the realities, they are in the best position to
decide which path they and their baby should go down. After all, it is THEIR
journey. Whether to rely on the guidance of medical opinions, their religion
or community standards should be up to them. Whether to be swayed by the
grimmest statistics or to grasp for the dimmest rays of hope, should be up to them.
It is natural for every doc and nurse to have a personal bias. But it is
presumptuous, proprietary and self-righteous for health care providers - or
anyone else - to claim they know what is the right decision for another family
in these uncertain situations. This is true whether our bias is toward saving
every baby, or letting nature take its course with every baby who's under a
certain weight or gestational age. If we have an opinion, we are entitled to
surmise what we might have done for our own baby, but to stop there. We are
not entitled to demand that others obey our own intuitions, instincts, morals
or opinions.
It is also not our job to protect parents from feelings of
responsibility by excluding them from the decision-making process. Parents
have strong nurturing instincts and it is so very meaningful for them to be
able to express their love through making important, compassionate decisions.
It is true that most parents have doubts about their decision, but this is a
normal and natural part of the grieving process, whether they grieve for a
baby who died or for a child who is severely disabled. Wrestling with second
thoughts is also a way for parents to evaluate, solidify and embrace the
beliefs and principles that guided their decisions.
You can encourage
parents by reminding them that they feel badly, not because they made a bad
decision, but because the decision was so very painful to make.
When the best path is unclear, fully informed parents are the best
decision-makers. No one is closer to that baby in blood, body and spirit
than the mother and father. Their best guess is the best one of all. No one
else can decide for their baby as carefully, thoughtfully, purposefully and
solemnly as they do. No one else can be more agonized, calculating and
soul-searching. This is a decision that must be made with the mind, gut and
heart. Your own baby would want you to make this decision, not strangers.
On parents who turn away from aggressive medical intervention:
In my work with bereaved parents and parents of premature babies, the
predominant concern parents have is about the suffering that their tiny
babies and children endure. For the parents who decided to let nature take
its course, either in the NICU or years later, it was apparent to them that
the suffering far outweighed the current or potential benefits. The prospect
or experience of living with a handicapped child concerned them NOT because
of the hassle that entails for them, but because of the misery that their
child would or did have to bear.
On what I tell grieving parents:
Part of being a parent is discovering those remarkable feelings of devotion
to your child's well-being and happiness. And part of being a devoted parent
is to gradually let go. Normally, letting go is a drawn-out process of
trusting the child to find her own path through life, giving her room to grow
into a responsible, independent person. Most parents have many years to give
their child both roots and wings. But when the letting go involves death,
particularly so soon after birth, it can be incredibly difficult. It's just
too soon. As such, deciding to turn away from aggressive medical
intervention can be the ultimate act of parental devotion. The urge to
protect and hold onto your baby at all costs can be so strong, and yet, your
sense of "what is best for my child" prevails upon you to give your child
wings. This takes a lot of courage, faith and love.
Respectfully,
Deborah L. Davis, Ph.D.
Author of Empty Cradle, Broken Heart: Surviving the Death of Your Baby
(Fulcrum, 1991; 1996) and Loving and Letting Go: For Parents who Decided to
Turn Away from Aggressive Medical Intervention for Their Critically Ill
Newborns (Centering, 1993); co-author of Neonatal Guidelines for the Colorado
Collective for Medical Decisions, 1997.
Copyright 1999 Deborah K. Davies
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