COLORADO COLLECTIVE FOR MEDICAL DECISIONS: NEONATAL GUIDELINES and VIDEO

• To provide community based guidelines for the medical care of critically ill newborns in such a way that it encourages and enhances the dialogue between the parents and health care professionals during this difficult, heart wrenching time;
• To promote open discussion around difficult NICU medical/ethical issues in the hope that these medical resources and technology will be used ever more wisely and humanely;
• To empower physicians to be decision leaders when a baby's prognosis is clear, whether it is positive or grim;
• To encourage collaborative decision-making between health care providers and the parents of critically ill newborns for whom the prognosis is unclear;
• To empower and support parents for whatever decision they might make.

OVERVIEW

When the prognosis is clear

When the prognosis is unclear

INTENDED PARENT AUDIENCE FOR THE VIDEO

• Parents whose babies are dying. When an infant is very unlikely to survive, the video can support the parents' inevitable process of letting go, either before or after the baby has died.
• Parents whose babies' prognoses are uncertain. When a baby's prognosis is uncertain, the video shows other parents struggling with similar decisions, and may help illuminate the road the parents know they must follow. It is our intention that parents feel affirmed and supported, whatever their decision and whatever the outcome.

INTENDED USE OF THE VIDEO (from the User's Guide, first draft)

In this vein, when a baby's prognosis is clearly grim, if the parents are fighting you when you tell them that there's nothing to be done except let go, resist the urge to throw the video at them. Instead, offer this video in the spirit of empowering parents to face the situation. With the intent to support and guide parents, the video becomes a valuable tool for you to help the parents face the painful feelings they are trying to avoid. This video, along with your gentle empathy and encouragement, may give parents the support they need to be there for their dying child.

AN INSIDE LOOK AT THE PROCESS OF MAKING THIS VIDEO

While many have viewed the tape as an unbiased, balanced view of options and outcomes, others have pointed out that it seems to favor letting go and it only shows negative outcomes. This perceived skew can be partly attributed to the intertwining of the decision making and letting go segments, which gives some people the impression that the tape promotes comfort care for parents who are struggling with making decisions.

However, another significant reason for the differing perceptions is that each one of us has a built-in bias. In uncertain situations, some of us lean toward "do everything medically possible to hold on," while some of us lean toward "relieve suffering and let go." If your bias is toward holding on, you may feel less support for that and feel bombarded by the letting go. If your bias is for letting go, you will probably see the video as more balanced. This effect was intentional, and there are several reasons why we crafted it this way:

1. The view "do everything medically possible to hold on", is the prevailing one in our society. Parents who lean that way will already feel plenty of social support and affirmation and don't need a videotape to do this as well.

It is the parents who are leaning toward letting go who need the extra support and affirmation that this can be a good and decent decision. While the video does lean toward letting go, it also tells parents to follow their own beliefs and their hearts. Our intent is to:

• show "hold on" parents that there is another real and humane option, and
• show "let go" parents that their instincts are loving and valid.

2. It is easier to hold on than to let go of a precious baby. Even parents who decide to withdraw or withhold aggressive medical intervention will testify that the urge to do everything possible is extremely strong and instinctive. Therefore, the tape gives extra reassurance in the "letting go" direction for the parents who need validation, permission or encouragement to do that.

3. The tape does not show positive outcomes because folks already know what that looks like. Parents already assume and imagine that that's what modern medicine accomplishes. Parents need the reality check, to see that sometimes modern medicine can't fix everything. Parents need to see what the negative outcomes can look like, to balance what their everyday experience--and too many media headlines about "miracles"-- shows them. They need to see and hear what disabled and medically fragile can mean for parenting. If we showed positive outcome children, what parent would not want to hold on for the hope of that image? Showing positive outcomes would swing the bias so unfairly and irretrievably toward holding on. And we want this tape to give permission for both options.

OVERVIEW
CCMD Neonatal Guidelines

• Modern medical technology achieves many good and important goals.
• A primary goal of neonatal intensive care is to help sick infants become healthy children.
• To use technology wisely, we must acknowledge its limitations.
• For some infants, the burdens of treatment outweigh the benefits.
• Whether an infant lives or dies, it is the parents who ultimately must endure the consequences.
• Parents must be fully informed about the risks, benefits, outcomes and uncertainties of aggressive medical intervention for their individual baby.
• When the prognosis is clear, health care providers should be decision leaders.
• When the prognosis is unclear (or becomes unclear), health care providers should work collaboratively with parents as decisions are made about an infant's care.
• When medical intervention is inappropriate, declined or withdrawn, comfort care should be provided.
• When medical intervention is pursued for an infant whose outcome is uncertain, physicians should discuss with parents the specific burdens of treatment, and how benefits and outcomes remain speculative.
• For all NICU infants, regular and timely care conferences between parents and health care teams are an integral part of providing appropriate treatment.
• Follow-up care should be provided to all families.

GUIDELINES FEATURED IN VIDEO AS WRITTEN TEXT

• Infants who are likely to survive should be given appropriate medical care even if they have mental or physical limitations.
• Infants who are extremely unlikely to survive infancy due to extreme prematurity should receive comfort care instead of aggressive life-sustaining interventions.
• Infants who are extremely unlikely to survive infancy due to a lethal birth defect should receive comfort care instead of aggressive life-sustaining interventions.
• Infants for whom survival offers only a short lifetime filled with significant suffering should receive comfort care instead of life-sustaining interventions.
• When the outcome of aggressive medical care for an infant is uncertain, the family should be provided with comprehensive information about outcomes.
• When the outcome of aggressive medical care for an infant is uncertain, decisions about life-sustaining interventions should be made jointly by the family and medical team.