Original Article

Journal of Perinatology (2006) 26, S24–S26. doi:10.1038/sj.jp.7211468

Palliative care in the fetus and newborn

J Bhatia1

1Section of Neonatology, Department of Pediatrics, Medical College of Georgia, Augusta, GA, USA

Correspondence: Dr J Bhatia, BI W-6033, Medical College of Georgia, Augusta, GA 30912, USA. E-mail: jatindeb@mail.mcg.edu

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Abstract

The changing environment in neonatology and perinatology has led to the examination of issues surrounding palliative care. Newborn palliative care should be considered in three general areas: (1) Neonates at the limits of viability. As advances in technology and outcomes become available, it is the responsibility of the health-care community and society to reach a consensus regarding the limits of viability. (2) Neonates with lethal congenital anomalies. When appropriate, and diagnosis and prognosis are certain, why should a family be deprived the opportunity to choose palliative care for the unborn child? (3) Neonates not responsive to aggressive medical management where continuing therapy may prolong suffering and postpone death. The question 'Are you doing for the neonate or to the neonate?' should be asked. These complex issues, along with best interest issues, site, mode and timing of delivery, and the development of palliative care are the subject of this manuscript.

Keywords:

neonate, death, lethal anomalies, prognosis

Advances in technology, as well as therapeutic modalities, have led to increasing survival of premature infants, better prenatal identification of congenital anomalies, and overall improvements in morbidity and mortality. The preterm birthrate has increased from 12% in 2002 to 12.3% in 2003, while fetal mortality rate remains higher than overall neonatal rate (6.4/1000 versus 4.7/1000 live births). Congenital anomalies account for 20.1%, a slight increase from 20% in 2001.1 Despite advances in fetal detection of these anomalies, various factors, including lack of prenatal care, may lead to the delivery of an infant with an unexpected anomaly which may prove to be lethal. More often than not, the emerging concept of palliative care may be an option for these infants. Palliative care is defined as the active, total approach to care, and embraces physical, emotional, social, and spiritual elements. It focuses on enhancement of the quality of life for the child, support for the family, and also includes the management of symptoms and provision of respite and care through death and bereavement.2

Pregnancy demands dual goals to establish care for both the fetus and the mother. This relationship raises numerous complex ethical questions about the 'best interests' of fetal and maternal health. These issues come to bear whenever a mother has to make decisions regarding fetal therapy or delivery.3 This presentation will focus on the provision of care, including palliative care, for the unborn fetus and the newborn infant.

Palliative care should be considered in three general categories:2 (1) neonates at the limit of viability, (2) neonates with congenital anomalies considered to be lethal, and (3) neonates with serious medical or surgical conditions not responding to maximal therapy or for whom continued treatment may prolong suffering.4, 5

If a decision is made for palliative care after the delivery of the infant, it should not be considered any differently than an advance plan of care for delivery of a healthy infant. It has been argued that these antenatal advance directives are not appropriate.6 Nonetheless, discussions with families in the prenatal and perinatal period should revolve around the diagnosis, prognosis, and the degree of certainty that accompanies both the diagnosis and prognosis. Further, as stated by Leuthner,2 the meaning of the given prognosis should be considered, along with appropriate consultation with the neonatologist, neurologist, and/or cardiothoracic surgeon depending on the condition. One should also embrace family-centered care principles and include clergy or other support persons as desired by the family.

Table 1 2 summarizes the considerations of diagnostic and prognostic certainty. In the first category, during prenatal counseling, all of the modalities used to make the diagnosis and the level of certainty should be discussed. For example, chromosomal analysis with a diagnosis would be more objective and accurate than an ultrasound, which is not conclusive. Also, if applicable, fetal therapy versus delivery at term, or provision of palliative care should all be considered. If the decision is made to provide palliative care after delivery rather than termination, several issues need to be considered. Under other circumstances such as severe oligohydramnios and therefore, accompanying pulmonary hypoplasia, there are two possible scenarios: one in which the diagnosis, and therefore prognosis is certain and palliative/hospice care can be provided with a written plan, or one in which the diagnosis is correct, but the prognosis is unknown since the degree of lung hypoplasia is unclear. In the latter case, delivery room assessment followed by deciding on a plan of care is appropriate. This approach may include admission to the intensive care unit, obtaining diagnostic testing (chest radiograph, renal ultrasound), and laboratory tests (arterial blood gas), while providing all the necessary care. Based on postnatal testing and clinical judgment, if the prognosis is considered not to be in the best interest of the patient, one could re-enter the dialogue regarding palliative care. For example, if based on testing, it is determined that infant has respiratory failure and/or insufficiency and has poor renal structure and/or function, the possibilities of prolonged mechanical ventilatory support and dialysis need to be discussed with the family. In this scenario, it may be days to weeks before the family can make a decision or come to grips with the prognosis and will require prolonged support and patience from the medical and nursing staff. There have been instances where families request 'all care required' and dialysis is provided. Then, at the time of transition to home, while continuing dialysis and awaiting growth till transplantable weight is reached, the families finally face reality and realize or come to the difficult conclusion that they cannot carry the additional burden and request palliative care. This raises a variety of ethical issues and puts the whole system to test. However, if the appropriate outcome is reached for all concerned, then the whole process is worthwhile.


The other situation that is common in the delivery room is the assessment of gestational age and the decision for palliative versus intensive care. While published guidelines2, 4, 5, 7, 8 provide a 'physician override' to reverse a decision to provide palliative care and proceed with aggressive resuscitation and intensive care, it brings another issue to the forefront: how certain are we? Given the controversial limits of viability, the practitioner is often left with a 'split second' decision. Gestational age by obstetric dating has been shown to be more accurate than estimation from physical and neurologic criteria.9, 10 Further, there may be inconsistencies in the physical exam, making estimation of gestational age difficult. For example, the skin may look more mature while other features less so. These situations often lead to aggressive resuscitation, only to be confronted with a clinical situation such as Grade IV intraventricular hemorrhage or catastrophic lung disease, which may warrant rethinking palliative care. If based on all clinical evidence it is not in the best interest of the infant to undergo aggressive resuscitation and palliative care has been discussed, one needs to ask the question: Just because I can, should I? This would then avoid the scenario described above. In discussing the appropriateness of resuscitation for these infants, the issue of 'viability' is often raised. As early as 1984, Dunn and Stirrat11 proposed the limit of 22 weeks gestation and/or 500 g for reporting perinatal statistics. Although survival of the extremely low-birth-weight infant has improved, others have suggested that survival should be linked to quality of life as well.12 Regardless of survival rates in different units or countries, there remains significant variability in physicians' attitudes, especially at the 'limits of viability.' In one study, at 23 weeks, 90% of neonatologists considered treatment to be of uncertain benefit and about half held the same view at 24 weeks gestation. Before 23 weeks, 82% felt that treatment was futile, while at 25 weeks, 84% felt it was clearly beneficial.13 When benefits of resuscitation were considered uncertain, all of the respondents reported that they would resuscitate at parental request, most if parents were unsure. On the other hand, if parents requested no intervention, 24% would override parental wishes and let the clinical scenario dictate decision making.11 If one agrees that one should allow parents to make decisions on behalf of their child and involve parents in the decision making process, why then do we have this discrepancy? Moreover, one cannot predict long-term sequelae in the delivery room and there are data demonstrating that infants who die after resuscitation die early in the hospital course.14 More recently, this group has reported their experience in their large nursery that more and more infants 'doomed' die in their mother's arms, extubated, without ever having received intensive resuscitation. This suggests a changing attitude and firms up the consensus regarding withholding and withdrawing intensive care.15 Withdrawing support after establishing a better assessment would appear to be more justifiable. An issue raised by Leuthner:2 'if one acknowledges that the evaluation in the delivery room is speculative at best, and that such assessment adds little to no information that helps in predicting prognosis, why cannot the decision be made before birth?' Further, if we consider withdrawing life-sustaining treatment when efforts appear futile, then what is the difference between making such decisions before birth, for example, anencephaly, Trisomy 13, or prolonging life when a lethal outcome is expected such as some types of epidermolysis bullosa where mechanical ventilation may also be needed? Predictions about mortality can never be a 100% and for a given parent, even if the percent mortality is 20% and it happens in their case, mortality is 100%. Therefore, if prenatal consultation and evaluation allows a certain degree of certainty, it is reasonable for the physicians and parents to make a decision for palliative care before the birth of the infant.

As discussions move forward towards expectant management or palliative care, plans also need to be made for the site and mode of delivery, as well as timing. The delivery plan should be consistent and respectful of the parents' wishes. However, certain obstacles may arise. For example, even though the community physician and parents are comfortable with the palliative care plan devised, the nursing personnel may not be comfortable with palliative/hospice care. Further, other physicians who could possibly be involved may not be comfortable. Therefore, a cohesive team approach is required. If the lesion is indeed lethal, the least invasive form of delivery should be planned: vaginal delivery. However, if a parent is desirous of seeing and holding a live child even if the anomaly is considered lethal, and vaginal delivery is determined to be too stressful, the parents may elect for a cesarean section. In this case, the request should be considered. The timing of delivery should take into consideration the health of the mother, presence of family and clergy, as well as the availability of appropriate resources to support the family. An additional aspect that needs to be considered is the mental health of the expectant mother since alterations in mental health are being reported.16 Further, the stress of having a fetus in utero who is expected to die should be addressed. Therefore, counseling regarding delivery should include post delivery issues, future risks, and address the fact that every family always expects a 'normal, healthy' child regardless of how much is discussed.

The environment in which comfort care will be rendered should be addressed by the system. A busy NICU is not the ideal place to provide this care, nor is placing a mother on a post-partum ward where other parents have healthy neonates appropriate. Ideally, a separate room with access to the medical team as well as enough space for family, clergy, and friends, if desired, is appropriate. However, it should be remembered that the same mother is going to confront another mother caring for her infant or buying formula or baby clothes, thereby reminding her again of her own loss and we, as care givers, do not often address these issues. Comfort care should include the aspects of dignity, warmth, and pain control. The process of dying should also be discussed. Some infants start to gasp, which may be hard for the family to interpret and understand. Further, although death may be anticipated, it may be hours to days away. Therefore, the care plan should include options of staying in the hospital or going home with provision of hospice care. It is this writer's opinion that more often that not, parents are not prepared for the death of a child at home. This preventive reaction is perhaps related to the short interval between birth and death, allowing for little time to prepare.

All of these aspects should be carried out with the family in focus. The appropriate multidisciplinary team should include physicians, nurses, social workers, and clergy, and should be sensitive to religious and cultural beliefs surrounding death and dying. In addition, to maintain memories, most NICUs have developed a package where pictures, labels, lock of hair, blankets etc. are placed along with well wishes from the care givers. Lastly, death and bereavement issues should not be overlooked and the families need to be given an opportunity to speak with specific care givers weeks after the death of the child to discuss the same.

In summary, provision of palliative care to the fetus and the newborn requires a multidisciplinary approach to address all issues surrounding diagnoses, prognosis, and possible outcomes. It requires a dialogue between the care givers and the families and, in addition, also requires 'systems' to respond in a family-centered fashion with the ability to respond to difficult situations that can and will arise.

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