AboutKidsHealth

 

 

Decision makingDDecision makingDecision makingEnglishNeonatologyPremature;Newborn (0-28 days);Baby (1-12 months)NANANAPrenatal Adult (19+)NA2009-10-31T04:00:00ZJonathan Hellmann, MBBCh, MHSc, FCP(SA), FRCPC12.000000000000048.00000000000001213.00000000000Flat ContentHealth A-Z<p>Learn about difficult decisions that parents of premature babies must make. To make matters worse, these decisions often must be made quickly.</p><p>Parents of premature babies may have to make difficult decisions for their child's treatment. These decisions often must be made quickly. Parents may have a limited understanding of the total situation and are often under emotional, financial, and physical duress. Although in many ways final decisions are ultimately left to the parents, decisions and recommendations are based on information that come from medical staff. Understanding why medical staff might hold certain beliefs and make certain recommendations is important for parents when making decisions. </p><h2>Key points</h2> <ul><li>Parents of premature babies may have to make difficult decisions about their baby's treatment, based on recommendations and information that come from the health-care team.</li> <li>Parents should try to become as informed and knowledgable about their baby's situation as possible so that they have a better understanding when it comes to decision making.</li> <li>The challenge is to consider what is in the baby’s best interest and to get an understanding of what the long-term implications are for the baby, the parents, and the rest of the family, without having feelings of guilt for making a certain decision.</li></ul>
Prise de décisionPPrise de décisionDecision makingFrenchNeonatologyPremature;Newborn (0-28 days);Baby (1-12 months)NANANAPrenatal Adult (19+)NA2009-10-31T04:00:00ZJonathan Hellmann, MBBCh, MHSc, FCP(SA), FRCPC12.000000000000048.00000000000001213.00000000000Flat ContentHealth A-Z<p>Lisez au sujet des décisions difficiles que les parents de bébés prématurés doivent prendre. De plus, ces décisions doivent souvent être prises rapidement.</p><p>Les parents de bébés prématurés doivent participer à la prise de décisions difficiles. Ces décisions doivent souvent être prises rapidement. Les parents peuvent avoir une compréhension sommaire de la situation globale et subissent souvent des contraintes émotives, financières et physiques. Bien que souvent les décisions finales soient en fin de compte laissées aux parents, les décisions et les recommandations sont basées sur l’information qui provient du personnel médical. Comprendre pourquoi le personnel médical entretiendrait certaines croyances et ferait certaines recommandations est important pour les parents lorsqu’ils doivent prendre une décision.</p><h2>À retenir</h2> <ul><li>Parfois, les parents de bébés prématurés doivent prendre des décisions difficiles au sujet du traitement de leur bébé. Ces décisions sont basées sur les recommandations et les renseignements qui proviennent du personnel médical.</li> <li>Les parents devraient s’informer et s’éduquer autant que possible au sujet de la situation de leur bébé afin d’avoir une meilleure compréhension de la situation lorsqu’ils doivent prendre une décision.</li> <li>Le défi est de considérer ce qui est dans l’intérêt primordial du bébé et de bien comprendre quelles sont les implications à long terme pour le bébé, les parents et le reste de la famille sans l’influence de la culpabilité lorsque vient le temps de prendre une décision.</li></ul>

 

 

Decision making1833.00000000000Decision makingDecision makingDEnglishNeonatologyPremature;Newborn (0-28 days);Baby (1-12 months)NANANAPrenatal Adult (19+)NA2009-10-31T04:00:00ZJonathan Hellmann, MBBCh, MHSc, FCP(SA), FRCPC12.000000000000048.00000000000001213.00000000000Flat ContentHealth A-Z<p>Learn about difficult decisions that parents of premature babies must make. To make matters worse, these decisions often must be made quickly.</p><p>Parents of premature babies may have to make difficult decisions for their child's treatment. These decisions often must be made quickly. Parents may have a limited understanding of the total situation and are often under emotional, financial, and physical duress. Although in many ways final decisions are ultimately left to the parents, decisions and recommendations are based on information that come from medical staff. Understanding why medical staff might hold certain beliefs and make certain recommendations is important for parents when making decisions. </p><h2>Key points</h2> <ul><li>Parents of premature babies may have to make difficult decisions about their baby's treatment, based on recommendations and information that come from the health-care team.</li> <li>Parents should try to become as informed and knowledgable about their baby's situation as possible so that they have a better understanding when it comes to decision making.</li> <li>The challenge is to consider what is in the baby’s best interest and to get an understanding of what the long-term implications are for the baby, the parents, and the rest of the family, without having feelings of guilt for making a certain decision.</li></ul><figure><img alt="Parents looking at their baby in an incubator" src="https://assets.aboutkidshealth.ca/akhassets/parents-baby-incubator-BRAN_EN.jpg" /> </figure> <h2>The doctor’s perspective</h2><p>All the staff at the NICU do their utmost to make every premature baby well. It is their desire to see premature babies get healthy, be discharged from the hospital, and grow to be thriving children. The entire facility is designed to make this happen as much as possible.</p><p>At the same time, not all premature babies in the NICU will survive. Some who do may have severely disabling conditions. Doctors and nurses at the NICU therefore must balance the hope that the premature baby will get better with the possibility that the baby may not get better or may have a severely compromised outcome.</p><h2>Initial reactions</h2><p>Very few parents expect their baby to be born prematurely.</p><p>Initial reactions to a premature birth vary, but are often highly charged and emotional. Some parents react with anger: they have done everything “right” during the pregnancy but they still find themselves in a difficult position, with their premature baby facing grave disabilities or even death. These emotions should be acknowledged. Some parents direct their anger at the obstetric or NICU staff and, while this may be understandable given the circumstances, it is often not very productive.</p><p>Almost every NICU will have a staff member trained to help parents get over their initial shock and help them direct their energies appropriately. Having a premature baby in the NICU is not easy and no one expects parents to breeze through the experience. The staff of the NICU aresympathetic to a parent’s distress, have seen it before, and have helped many parents before. Don’t wait to get support. Directing your efforts in a positive way will help everyone involved: your baby, you, and the professionals charged with taking care of your baby.</p><h2>One certain thing: uncertainty</h2><p>Following the parents’ initial reaction, the realities and the facts of their premature baby’s condition need to be explained. Parents should become as informed and knowledgeable about the situation as possible. Expectations about the course of events should be discussed with NICU staff as should the limits of what is medically and biologically possible.</p><p>Medical people almost never speak in absolutes, which is usually what a parent wants to hear. Will my baby get over this and thrive? Will my baby live? Will my baby be disabled in some way? Although it would be reassuring to know the answer to these questions with absolute certainty, even if the answer is negative in some way, the doctors familiar with your baby’s case will likely only be able to answer at best with probabilities. For example, in the large scheme of things, doctors know that premature babies born at 26 weeks have about a 50% survival rate and that of those that do survive, many will have severe disabilities.</p><p>While statistics address the population of premature babies of this age as a whole, they do not address any specific premature baby in particular. In other words, a doctor at the NICU cannot look at a premature baby born at 26 weeks and know what the long-term outcome will be for that particular baby. At the same time, the statistics cannot be ignored, and well trained staff who have seen and treated many premature babies are sometimes capable of getting a sense of the course of a baby’s condition.</p><p>Because this is the way in which doctors think and communicate, parents who are looking for absolute answers may get frustrated during what is already a difficult time.</p><p>Unfortunately, there is not really a way around this. As much as they would like to answer questions and predict outcomes with certainty, doctors and medical people in general understand that there are no absolutes. Sometimes a premature baby who appears to be well and progressing will suddenly and unexpectedly have a turn for the worse. Conversely, a baby who is not expected to do well can have a full recovery. While treatment in general will improve outcomes, the way in which outcomes are determined can go beyond the best efforts of the NICU and parents.</p><h2>Probability and hope</h2><p>When some parents are faced with a difficult situation in the NICU, understandably they hang on to the smallest hope. If doctors estimate a very low probability of a positive outcome for a premature baby in their care, parents often hold on to that low probability. While the staff in the NICU do not want to eliminate hope, they will encourage parents to have their hope framed within reality. There are several reasons parents may be encouraged in this manner. First, hope framed within reality helps parents prepare for the worst and may possibly encourage them to immediately make the best of a bad situation. Second, unrealistic hope can motivate parents to feel that they must do everything medically possible regardless of the situation. Again, this is understandable but not necessarily helpful to anyone, including their baby. For some parents, a desire to do something no matter what is an expression of love for their premature baby and a guard against future guilt: they fear that if all possible measures have not been taken and their baby has a bad outcome, they will not be able to live with themselves.</p><p>As one can imagine, decision making within this context can be very difficult indeed. The challenge is to consider what is in the baby’s best interest and to get an understanding of what the long-term implications are for the baby, the parents, and the rest of the family. Decisions, whether large or small, are best made without the influence of guilt or an unrealistic evaluation of the premature baby’s condition and probable outcome.</p><p>Getting to this point may not be easy and again, there are trained staff in the NICU to help parents understand the medical situation and the wider implications that situation is likely to have.</p><h4>More information</h4><ul><li> <a href="/Article?contentid=1855&language=English">Palliative Care </a></li></ul>https://assets.aboutkidshealth.ca/akhassets/parents-baby-incubator-BRAN_EN.jpgDecision making

Thank you to our sponsors

AboutKidsHealth is proud to partner with the following sponsors as they support our mission to improve the health and wellbeing of children in Canada and around the world by making accessible health care information available via the internet.