Who Should Decide the Survivability of Newborns?




Among the most controversial of medical issues is the resuscitation of newborns that are unlikely to survive. 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. (A normal, full-term pregnancy is 37 to 42 weeks of gestation.) This act has gained remarkably limited attention, and many neonatologists are not familiar with the act or DHS guidelines concerning its enforcement. A recent study published in Pediatrics suggested that most neonatologists surveyed did not agree with the legislation, but that it did have the power to change medical practice if it was enforced.

The BAIPA was initially understood to be antiabortion legislation, granting legal status to all live-born infants in the United States, regardless of whether birth was spontaneous, by Cesarean section, or induced by an elective abortion. Immediately after the passage of the BAIPA, the Neonatal Resuscitation Program Steering Committee issued an opinion that the law should not change neonatology practice with respect to the extremely premature infant. However, the DHS soon released enforcement guidelines that threatened investigations of violations of long-standing regulations — the Emergency Medical Treatment and Labor Act and the Child Abuse Prevention and Treatment Act — if any lay observer claimed that medical care was withheld from a newborn. The enforcement guidelines did not include a stipulation for a physician’s medical training and knowledge to prevail over the layperson’s observations. With the threat of hefty fines and litigation, many physicians and hospitals worry about the day when the BAIPA will actually be enforced.

The last several decades have seen vast improvements in technology and understanding of neonatal physiology, but surprisingly minor improvements in the actual survivability of extremely premature and low birth weight babies. Much debate still surrounds the gestational age and birth weight limits used to identify an infant’s ability to survive outside of the mother’s womb. In most cases, survival of infants born at less than 25 weeks gestation is unlikely. Most practitioners agree that aggressive measures of resuscitation for newborns born at less than 23 weeks gestation is futile and unwarranted. In such cases, neonatologists are more likely to provide comfort care to the infant and the family until the infant dies naturally.

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. 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?

The American Academy of Pediatrics recommends that neonatologists perform complete prenatal consultations with parents in the likelihood of an extremely premature birth. 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. Physicians should provide parents with the medical information necessary for informed decision-making, and but should also foster parental involvement in the care of their child. A framework for newborn resuscitation may be necessary to clarify each practitioner’s role in the care of likely nonviable newborns, and to aid in decision-making, but the government should not be mandating medical procedures or making therapeutic decisions in a complex life or death decision of a child.

References

Campbell, D., & Fleischman, A. (2001). Limits of Viability: Dilemmas, Decisions, and Decision Makers American Journal of Perinatology, 18 (03), 117-128 DOI: 10.1055/s-2001-14530

HUSSAIN, N., & ROSENKRANTZ, T. (2003). Ethical considerations in the management of infants born at extremely low gestational age Seminars in Perinatology, 27 (6), 458-470 DOI: 10.1053/j.semperi.2003.10.005

Partridge, J., Sendowski, M., Drey, E., & Martinez, A. (2009). Resuscitation of Likely Nonviable Newborns: Would Neonatology Practices in California Change if the Born-Alive Infants Protection Act Were Enforced? PEDIATRICS, 123 (4), 1088-1094 DOI: 10.1542/peds.2008-0643

Sayeed, S. (2005). Baby Doe Redux? The Department of Health and Human Services and the Born-Alive Infants Protection Act of 2002: A Cautionary Note on Normative Neonatal Practice PEDIATRICS, 116 (4) DOI: 10.1542/peds.2005-1590

Lakshminrusimha S, Carrion V. Perinatal phsyiology and principles of neotal resuscitation. Clin Ped Emerg Med. 2008;9:131-139.

Bastek, T. (2005). Prenatal Consultation Practices at the Border of Viability: A Regional Survey PEDIATRICS, 116 (2), 407-413 DOI: 10.1542/peds.2004-1427

Partridge, J. (2005). International Comparison of Care for Very Low Birth Weight Infants: Parents’ Perceptions of Counseling and Decision-Making PEDIATRICS, 116 (2) DOI: 10.1542/peds.2004-2274

  • lonegold

    As a parent and a Labor Nurse it is my firm belief that parents-to-be must be compassionately, tactfully yet fully informed about the exegencies of the gestation of their child. It is up to them to decide what is to be done for the preservation of the life of their child at whatever stage of gestation that child might be. As icky-sticky it seems at the moment such counseling will get easier as the public becomes more and more informed and as primary care givers become more practiced at it.
    As far as the issue of the government getting involved in what should be up to the physicians and/or the parents that has already long been the case. There was a time in this country when women couldn’t get a hysterectomy (by law) without the written consent of her husband, not to mention Roe v Wade.

  • There is an active discussion concerning this blog post at http://allnurses.com/nursing-news/who-should-decide-398474.html

    Here is just one great comment:

    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.

  • Jeff

    When given time prior to birth, I sit down and talk to the parents in plain English. We cover all the basics, what are the odds the child will ever walk, talk , eat, or pee and poop on their own. Then we talk about vision problems in terms of reading or even seeing and breathing issues. I will only cover diagnosis such as Intraventicular hemorrhage (bleeding in the brain) if the parents bring up the subject. And even when the information is put in plain English, the parents are ill prepared to make such a monumental decision on their own, so in my opinion it needs to be the Parents as well as the staff who together make the choice.

Jennifer Gibson, PharmD

Jennifer Gibson, PharmD, is a practicing clinical pharmacist and medical writer/editor with experience in researching and preparing scientific publications, developing public relations materials, creating educational resources and presentations, and editing technical manuscripts. She is the owner of Excalibur Scientific, LLC.

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