Who Should Decide the Survivability of Newborns?

  1. The decision to resuscitate a newborn that is unlikely to survive is a complex one that should involve physicians, other health care professionals, and parents. However, these decisions must also be made quickly. In these cases, timely and appropriate decision-making can decide whether an infant dies, survives with impairment, or survives intact. The consequences of the decisions-positive or negative -- are almost immediate.

    The Born-Alive Infants Protection Act (BAIPA), enacted in 2002, and the enforcement guidelines later issued by the United State's Department of Health and Human Services (DHS) outlined clinical procedures to be used in the resuscitation and care of infants born between 20 and 24 weeks gestation.

    Medical professionals bring their judgment and experience, as well as perceived obligations and legal mandates to the decision-making; parents bring cultural, personal, ideological, and religious beliefs to the decision-making.
    Who should be permitted to make the final judgment of what treatment is in the best interest of the child?

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  3. by   canoehead
  4. by   Loralai
    It is indeed a difficult question and one that can not have a vague or generalized answer. Each case has to be treated individually. The parents experience, education and overall expectations are a huge consideration. While we can indeed save a 24 weeker, the overall chances of it having no long-term complications are slim. So while it's possible to save this child are the parents able to deal with the stress and immense financial concerns of life-long therapy, doctor visits, hospitalizations and more? A telling paragraph in the article is: "Most physicians are comfortable discussing clinical issues with parents, but far fewer are comfortable discussing quality-of-life issues, expected long-term outcomes, or parental preferences."

    I've had 3 preemies. My first child, a 32 weeker, I would have adamantly argued with any parent who thought we should not attempt to save a 24 weeker. Every life is precious, every life should have a chance to be saved. Though she was on a vent for only 3 days and had some developmental delays she's okay now. My next daughter reaffirmed this belief when she was a 36 weeker with no problems.

    Then I had my son at 27 weeks becaues of HELLP syndrome, who was born at 1 lb. 11 oz. with brain bleeds, 3 months on an oscillator, pulmonary hypertension, 6 weeks of nitric, tube fed, so on and so forth the list is too long. I thought I was prepared for this. I had experience with prematurity. It turned out to be so far from the truth. With all my son's complications my full-time job is Dr. appointments, surgeries, specialists, therapists, nurses and more. I don't know what the future holds for my son. He is severely delayed and while he's my whole world I wonder at what cost it is coming to my other 2 children. I wonder if all the invasive tests he experiences are going to help his quality of life at all. This month, with no exaggeration, we have 18 appointments at 16 different doctors and therapists.

    I had no idea. No one in the NICU informed me of the complications. The life-long therapy and how absolutely life changing this would be. Vacations, a date night with my husband, being able to ever again have an 8 hour night of sleep... all in the past and my son is 2 years old. I mistakenly assumed, as was my experience with my 32 weeker, that once we were out of the NICU besides a few more Dr. appointments the preemie experience was over. None of my son's Doctors, NNP's, nurses or anyone else commented on what would happen once we were home.

    While I lay in the hospital for a week knowing we were headed toward a premature birth not a single doctor mentioned what I may have been in store for bringing my child home. While I am extremely grateful for all they did for my son and myself... I got the distinct impression that they have absolutely no focus or consideration for once that mom and child are sent home. It's turned over into someone else's hands. Before any decisions on survivability of newborns and who's hands the decision rests in can be answered, the doctors and nurses MUST do a better job of informing parents not just what complications may lay in store for these babies in the hospital but what the life-long implications will be.

    I'm not saying I would have made the decision to not save my son, since he was 760 grams and at 27 weeks the odds were with him. But if having 2 previous children, and premature at that, I wasn't even aware of these issues how could another parent POSSIBLY be able to consider and make any informed decision? Seeing a few preemies of parents I grew close to in our months and months in the NICU pass away was a heart-wrenching life lesson as I heard the phrase "there are worse things then death" repeated more then a few times. All the power lies in the Doctors hands right now as the vast majority of parents absolutely can not comprehend what decision they are making. And sadly, it's only the parents who have to live with the decision as the Doctors role ends when the child is discharged.
  5. by   FireStarterRN
    Another murky ethical quandary posed by modern medicine. I do believe we should have cutoffs at the beginning of life, but like canoehead, wouldn't want to be the one to decide.
  6. by   Jokerhill
    There is a good lecture on the NICUniversity web site about this very thing. It addresses not only survivability but outcomes. It is one thing to keep a fetus alive but when you know it will never walk, talk, eat, see, or maybe even breath on it's own should you revive it? We in the medical field will torture it endlessly with one test or surgery after another until it finally gets an infection we can't cure, and dies on it's own. I personally think we give ourselves too much credit here, I have seen babies with a DNR survive and do well and other full term and doing fine at birth babies die of sepsis in hours. We can do everything and they die or nothing and they live, it really not up to us and understanding and believing that helps make my job a lot easier. God does not make mistakes, he gave us certain abilities that we use the best we can, sometimes we use our hands and do all we can and sometimes we use our brains and hold back. With each new baby it will never be black and white it will always be a different shade of gray.
  7. by   llg
    Thank you for sharing your story, Loralai. The outcomes you describe are commone -- and yet, in my experience, most people believe "it will never happen to them." And sometimes, parents who are leaning towards the decision to not treat or to withdraw treatment are pressured into "doing everything" by friends, family, and even health care providers who urge them to "don't give up," "believe in miricles."

    One incident really impressed me many years ago at a conference on this very topic. The audience was mostly physicians working in community hospitals who sent babies to our NICU. After reviewing all the statistics, outcomes, etc. with the group ... the head neonatologist asked ... "If you were to deliver a 22 week baby in your hospital, would you encourage the parents to have the baby transported to us? Or would you make the baby and Mom comfortable and let the baby die in her arms?" Most people send they would urge the parents to have the baby transported.

    Then the neonatologist asked ..."What if the mother was your wife or daughter ... and the baby was born at your hospital? What would you want for your own family?" Very few people said they would want the baby transported. The vast majority said they would not want the baby to be transported to a NICU and treated aggresively.

    Then the neonatologist asked ... "Why are we recommending a different standard of care for our patients than we would want for our own families?" The question hung in the air. Everybody knew why. It relates to legalities and lawsuits. With most parents totally unprepared to make such a decision, everyone errs on the side of agressive treatment. Only in families who have enough knowledge and experience to have firm confidence in their decision to NOT treat aggressively, is the decision made to not treat. Such families are rare.

    And of course, some people could never decide not to treat (families and health care providers) because of their religious beliefs.

    It gets even more complicated when the parents aren't paying the bill and society is asked to pick up the financial cost for treatment that no one believes will lead to a high quality of life.
  8. by   Junebugfairy
    each situation is unique, which is why we look to our physicians to assist us in making the best possible decision based on risks etc..

    i personally would not do 'everything' possible to keep a baby alive if i gave birth at 22-23 weeks. i know the chances of survival are slim, and i am aware that the risks of developmental problems and health issues are high.

    i would feel that i am placing more pain and suffering on the baby by attempting to keep such an extreme preemie alive.
  9. by   loriangel14
    This is indeed a very difficult subject. As the mother of a 24 weeker I was told by my doctors the possible outcome of having my child so early. They covered everything from best to worst case scenario.But even the best doctors can't predict the future of your child. Quality of life issues are difficult to discuss when they don't know what is going to happen down the road.I do believe that each case should be assessed individually,simply picking a "cut off " date for resuscitation would not take into account each childs condition.

    I am very fortunate. My daughter was born at McMaster Chedoke Children's Hospital in Hamilton Ontario weighing 750 g, there was never any question about whether to resuscitate or not and she received wonderful care. Throughout her 15 week stay and follow up care we received complete support and they did everything they had to for my daughter to survive her early start.She is now a completely normal 17 year old straight A student.I realize that I am much luckier than others and if things had turned out to be more difficult for her I may feel differently about saving one born so early.
  10. by   Jokerhill
    Loralai, I for one don't feel bad for what you are going through, I truly try to tell my patients the possible outcomes, but it is only statistics to them and most all of them hope their child will beat the odds and chose to resuscitate. But like I said in my first post we give ourselves to much credit it is not up to us in the long term. You did not do this to yourself, and the NICU staff did not do it to you. Your baby is a gift you have been given and you will truly understand what unconditional love is more than anyone else can imagine. You will love deeper and hurt more than you ever thought possible and will be a great person in the end. I do tell my parents about the wont walk, see, eat, ect... but it is a family we are dealing with not just a baby and the family will grow and understand things in new ways never imagined. It is not wrong to die and it is not wrong to live both are opportunity's for growth. Jeff
  11. by   Jokerhill
    I am sorry in two post I did not address the question directly. so here goes.
    Who Should Decide the Survivability of Newborns?
    There is only answer none that is God's work, we can decide if we want to resuscitate or not but we can not make any baby or adult for that matter survive. Jeff
  12. by   ElvishDNP
    I don't know.

    What I do know is that were I to give birth to a 22-23 weeker I would not want him resuscitated. Probably not at 24-26 weeks either. That's just me. Can't make that call for other folks, but I would rather have a couple hours of holding and letting go peacefully than a potential lifetime of tubes and trachs and vents and whathaveyou. Again - just me.

    No guarantees with anything, really.
  13. by   Junebugfairy
    i agree elvish..
  14. by   FireStarterRN
    This is more and more of a dilemma as neonatal breakthroughs have pushed the limit for survivability. In my state any child weighing less than 2 lbs at birth is eligible for free medical care for life. Yet at the same time, the state is kicking people off of the Basic Health program for lack of funds.

    I'm a firm believer, personally, in basic healthcare for all, coupled with rationing. I find it upside-down for society to pay millions to save the life of one extremely premature child with the prospect of a lifetime of medical expenses and a poor outcome, yet deny access to primary care physicians to ordinary people.