Submitted by kmcochran on
Keith Barrington highlights this article on his recent blogpost at Neonatal Research. The article is from parents of extremely preterm infants born in Canada and Australia. It is a review of experiences and leads to a list of recommendations made by the parents to neonataology providers counseling families facing a preterm birth. The recommendations provide much food for thought…which I am still digesting.
Recommendations for healthcare providers
1. Tell women that there is nothing they could have done to prevent the premature birth from happening.
2. Our unborn children have a story and are part of our hopes and dreams. Do not use gestational age to categorise our child. Ask us if our unborn baby has a name.
3. Each baby is different. Have a personalised approach. You can tell us what generally happens to children about to be born at the same stage of gestation as our child, but please also describe to us the particularities of our child that will influence his or her outcome.
4. Each family is different. We disagree that every family needs to receive extensive information about everything negative that may happen. Some parents want statistics, others want the general picture. Some parents want to make important decisions on their own, while others want recommendations. Please listen to us individually.
5. We need to trust you. Do not tell us that babies at 22 or 23 weeks do not survive. Do not tell us that most preterm infants are disabled. We rely on you to know your data. Reflect on the difference between medical numbers and medical values. Do not tell parents that their child will have a negative impact on their family. You do not have data to support these claims. Many clinicians decide that giving babies a chance is not worth it for a 10%-20% survival rate. Our discussions should be about values and not so much about percentages.
6. Give us balanced information. Tell us about what our children may, or may not, be able to do. Also tell us about the quality of life of other preterm infants have when they get older
7. Words are important. Before our child’s birth, do not ask us if we want to do “everything” or “nothing”. Have you ever met parents who wanted “nothing” for their child? Do not use the word resuscitation, as premature infants are not usually defibrillated. That is what we think resuscitation means when you use that language. Use the word stabilisation instead.
8. Do not take away the hope we have. There is always hope that we will deliver tomorrow. There is hope that we will be able to spend some time with our child. There is hope that we can survive the death of our child with positive memories. Do not abandon us. Instead, tell us that you will be there whatever happens.
9. Empower parents. When other family members are present, emphasise that strong families are important.
10. Be proud of the work you do. It is so important to us. You make it possible for us to share precious time with our babies. You are the heroes for so many families. You help babies survive and we are thankful for that.
Keith Barrington makes a reasonable analogy regarding the position statements for most organizations regarding counseling for preterm birth. “One thing I want to re-iterate is the need to give balanced information. Most position statements and decision aids for extreme preterm delivery are designed to ensure that families know all of the bad things that can happen to extremely preterm infants. It is analogous to a decision aid for prostate cancer therapy only listing death, infection, incontinence and impotence as potential outcomes of a prostatectomy, without mentioning that it might also save your life! How could anyone make a balanced, informed, decision if they only hear of the downside?”
I would add that his analogy, standing professional statements and the listed parental recommendations could, in my view, also be applied to counseling for families of infants with trisomy 13 and 18.
- Marty McCaffrey
PS Can’t recommend Keith’s blog highly enough.