Ethical Dilemmas in Extreme Prematurity - Article Example

Ethical Dilemmas in Extreme Prematurity Introduction To resuscitate or not to resuscitate an infant below 25 week gestation on the threshold of viability is the question that confronts the medical community, parents, and the government with increasing frequency due advancements made in neonatal and fetel care. The rate of survival of such infants is on the increase but unfortunately that of improvement in disabilities is not. Parents and hospitals go wrong in making these critical decisions resulting in legal wrangling. Who has the final in the course of treatment for premature, underweight babies, the doctors or the hospital management? When do the courts interfere? Generally when they find the parents are not acting in the best interests of the children. (Hurst, 2005). Again what defines ‘the best interests of the children’; death or a painful life that is more painful to the parents. These and some more questions are fundamental to the premature baby healthcare debate. The Dilemma At the heart of this ethical dilemma and vexed social and legal issue lies the inability of the infant to declare whether he/she needs treatment or not. Most of the time, parents of the babies have to decide between burdensome outcome of death or survival with neurological morbidities (Meadow, 2007). Most babies born below 25 weeks die (Teasdale, ). Though survival rates below 25 weeks are extremely low, the increased health care now accounts for unprecedented rise in the survival rate of babies in the gestation period of 23-25 weeks. The weight of the baby is less than 600g. The Hostage Crisis The law fails to establish a common brightline which can be a consulted to establish the course of treatment (Hurst, 2005). The courts have in different instances arbitrated either in favor of parents or health professionals. To what parents label as being ‘held hostage’ or reduced to passive onlookers (Hurst, 2005) by the healthcare providers, the academic term as the merely ‘medicalization of parenting’ as in Pinch and Speilman (1990). Court Cases Infant and fetel care has been variously explained in through regulations, court injunctions and precedents set in cases US in the UK. The Child Abuse Amendments of 1984, by far, was the law that made the greatest impact on the development of legal landscape on the important issue. This law in the US mandates that the states should establish procedures to curb the cases of ‘medical neglect’ and instances of ‘withholding treatment’ in case of premature deliveries. This law descends from Baby doe regulations borne out of the famous Baby Doe case. The healthcare professionals had approached the Indiana court for a mandatory injunction on the treatment of an infant against the wishes of the parents, which was turned down. The case resulted in formation of baby doe regulations and baby doe squads. Clearly CAA tilts the balance towards medical jurisprudence over familial bonding. The Infants Protection Act of 2002 entitles a born alive infant to all possible treatment because it has the protections of law. Other important cases that have been highlighted in the recent legal history are that of Baby K, Baby Messenger, Montalvo vs Borkovec and Miller vs HCA. In the Baby K case a parent insisted upon a treatment of encephaly despite the refusal of the hospital to do so. The child died of some respiratory diseases aged two and a half years. The judgment of the court is interpreted to mean that the parents can demand treatment even in the case health professionals think it is futile. In the case of Gregory Messenger, the father of the baby withdrew the respiratory support system of a fifteen day old child. Result, the father was charged with manslaughter. In the Montalvo case, the parents of child born through a Caesarean operation charged the hospital of not helping them arrive at a sound decision based upon the risk associated with 23 week gestation. The Appellate Court of Wisconsin absolved both the concerned surgeon and the neonatologist. In the Miller vs HCA case, the hospital abiding by its charter proceeded to resuscitate a child against the wishes of the parents, was made to pay $29.4 million for the damages to the parents as the child survived with serious disabilities including that of sense perception. The varied nature of cases, the place of their origin and uniqueness has resulted in evolution of different kind of legislation in different states. These legislations and precedents set forth by court differ on what is foremost in decision making of infant resuscitation with parental consent or the opinion of healthcare experts. The Best Interests Often the survival of infants veers around administration of life support systems like the NICU. The decision to administer NICU often has to be made fast leaving little time for deliberation and analysis. In order to make this decision swiftly, whose word should be considered final that of the parents or healthcare professionals. Meadow (2007) suggests in the absence of predictive power of the outcome of life-saving intervention, the decision is best left to the parents. Tesdale citing the Report of Nuffield Council on Bioethics too suggests a decision in the ‘best interests of the child’ according to benchmark standards of Royal College of Pediatrics and British Association of Perinatal Medicine of UK. Development of common notion on the ‘best interests’ is difficult as case history, medical condition, the view of parents, social and economic circumstance are unique in each case.. Yet some others suggest recourse based on the best outcome. Decision making is made tough in the absence of tangible data to discriminate between ‘bad’ and ‘good’ outcome (Meadow, 2007). The Committee Report cited by Tesdale ( ) suggests the following course on the depending on the gestation period. It is recommended that full resuscitation with NICU be applied for infants born of 25 week gestation or above. An informed decision of parents and healthcare for below 25 weeks is required. Resuscitation should only be administered on the consent of the parents between 23 and 6days and it shouldn’t be considered at all below 23 weeks (Tesdale, Hurst 2005). In the UK, it is legally important for a baby born after 24 weeks to be administered treatment leaving the debate wide open as to be what is done in cases of infants involving less than 24-week gestation. This time period is also referred to as the ‘gray area’ (Kraybill, 1998 cited by Hurst 2005). However, Hurst (2005) cites Perzeeda et.al (2005) to state that due to variation in outcomes, there no broad consensus on gestational thresholds can be arrived at. Parental consent has largely developed as a thumb rule for the course of treatment involving the infant minimizing the chances of legal conflict (Hurst, 2005). Lucey et.al(2004) cited by Hurst (2005) and Vohr(2005) cited by Hurst(2005) however mention the ‘bleak outcomes ‘ of infant resuscitation and stress that future decisions can be based upon the past records of intact survival that are indeed very dismal. The Final Say Who has the final in the course of treatment for such babies the parents, the doctors or the hospital management? When do the courts interfere? Generally when they find the parents are not acting in the ‘best interests’ of the children. (Hurst, 2005). Again what defines ‘the best interests of the children’; death or a painful life that is more painful to the parents. Consensus is emerging over need for more transparency in decision making process. Yet the parents howsoever informed may never understand the changing condition, the treatment option of their children as too large to make a meaningful view. Parents have the right to accurate, clear, and timely information to make a decision. (Hurst, 2005). Further according to Hurst (2005), some members of the medical community believe that in face of overwhelming, and medical information, parent consent becomes irrelevant. The final decision, they believe, should be left to the health specialists. Conclusion A common voice that emerges from various schools of thought on the issue is of helping parents arrive at an informed decision. Parents need to be apprised of risks, benefits, outcomes and options to make an informed decision that meets their obligations as parents. Nurses can not only facilitate communication but also help the parents make the right decisions. Nurses can play a critical role in helping parents achieve informed decisions by fostering partnerships. The ANA Code of ethics asks the nurses to agree or disagree with parents (Hurst, 2005) in pursuit of their professional duties. In case of conflict it further intends that the nurses should solve them in the best interests of the patients. Follow ups are required to ascertain the actual risk factors associated with saving a baby. These partnerships based upon the rights of the parents and responsibilities of the hospital can be made on sound communication process. Thus we see that nurses play a nodal role in making decisions involving infants on the threshold of viability. We find that scientific enquiry and data evaluation yields more and more information that can be translated into knowledge by the healthcare and nursing professionals. The knowledge thus made can be shared with the parents and the final decision on the resuscitation should be best left to the parents. The entire process should be followed with as much transparency as possible. This will not decrease conflict but absolve most of the healthcare of ethical question of whether they acted interest in the best interests of the infant. With the parents, it can always be hoped that they act in the best interest of the infant, naturally. Teasdale, D., ( ), Ethical decisions in fetel medicine and neotantal intensive care, Paediatric Nursing, Vol 19, No 1, Pp 37-37 Meadow W., ( 2007), Babies between a rock and a hard place—neonatologists vs parents at the edge of viability , The Author/Journal Compilation, Foundation Acta Paeditricia/ Acta Paeditrica, 2007, 96, p.153 Hurst, I., (2005), (A), The legal landscape at the threshold of viability for extremely premature infants, a nursing perspective, Part 1, J Perinut Neonat Nurs, Vol. 19, No.2, Pp 155-156 Hurst, I., (2005), (B), The legal landscape at the threshold of viability for extremely premature infants, a nursing perspective, Part 2, J Perinut Neonat Nurs, Vol. 19, No.3, Pp 253-262 Kraybill E., (1998) Ethical issues in the care of extremely low birth weight infants. 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