Patricia Stevens, MS, NNP-BC 

 Abstract: 

While an infant’s death is always tragic, with a review of parents’ feedback, forethought, and empathy, we can help parents through this difficult time in a better way. 

Since the inception of NICU to care for critically ill neonates, death before discharge has been common. As our knowledge base grows and technology advancements are made, more and more critically ill newborns now do survive in NICU, yet there are some lives; no matter how much we try, we still cannot save. So how do we counsel parents who are resistant to this discussion and/ or maintain a stance of wanting “everything done” despite being told the reality of imminent death? Do we really help the family by prolonging the inevitable, thereby prolonging pain and suffering? 

Support for medical providers in this difficult situation is found in the position statement “Non- initiation or Withdrawal of Intensive Care for High-risk Neonates,” which clearly states: 

The critical role of the parents in decision-making must be respected. However, the physician’s first responsibility is to the patient. The physician is not obligated to provide inappropriate treatment or to withhold beneficial treatment at the parents’ request. Treatment that is harmful, of no benefit, or futile and merely prolonging dying should be considered inappropriate. In his or her best medical judgment, the physician must ensure that the chosen treatment is consistent with the best interest of the infant (1). 

The dichotomy of caring for more than one patient with conflicting needs is, at best, challenging. Following this recommendation is easier said than done. How do we have that difficult conversation with parents to facilitate end-of-life decisions when further care becomes futile? Needless suffering becomes unbearable to witness. Does death come after sometimes brutal resuscitations rather than a planned peaceful and meaningful experience surrounding family with support and closure? 

In the past few decades, we seemed to have done this better than we do now. Research had reported that most deaths in the NICU were preceded by decisions agreed upon by the medical team and family to withhold or withdraw life-sustaining medical treatment (1,2). Over the past ten years, however, it seems that these numbers have reversed. Fewer deaths are peaceful, and medical teams feel that discussing redirection of care is often met with such strong family resistance that having this discussion in these cases is often feels like a waste of time. 

This change of trend then becomes self-perpetuating, as more physicians have become more and more uncomfortable offering transition to comfort care. Several influences may contribute to this. Some physicians do not feel they have the right, either legally, ethically, or morally, to recommend withdrawal of life-sustaining medical therapy, despite support from AAP, legislation, and ethicists (1,2,3). Yet, avoidance of having this conversation can become the path of least resistance. Some feel their training was sparse in learning communication techniques to help families make end-of-life decisions (3), and hostility from family interactions in failed attempts reinforces further avoidance. Some erroneously contend that the burden to make this decision falls squarely revisited. 

In order to provide the very best end-of-life care for our patients and their families, it is important to consider the perspective of a parent entering the foreign world of NICU for the first time. Sensory overload from monitors and staff activity. Overwhelmed by the equipment. Confusion from the foreign language of medical jargon even if English speaking, even more confusion if not English speaking. Mental and physical exhaustion after complicated pregnancy and delivery. Guilt, fear, and the list goes on. Society identifies childbearing as a natural process, yet often, without warning, natural very quickly can become unnatural. 

In a meta-synthesis of predominantly empirical research, Xafis and colleagues (4) explored retrospective feedback from parents, which identifies what parents found assisted or impeded them in making end-of-life decisions for their child. The findings are not surprising. However, once identified, it becomes clear how the most needed support can be easily a neglected priority in a busy intensive care environment. 

According to this research, an essential aspect of care that aided parents in this situation, having never made end-of-life decisions before, was the need for a trusting relationship with the physician, which developed with time, honesty, and continuity of care long before end-of-life discussion even begins. This alone is difficult to provide in a large academic NICU, with rotating residents, attending neonatologists, nurse practitioners, nurses, social workers. 

Further, we may not have the luxury of time before mortal decline presents. Alternatively, the turn of events may occur during off-service time. Creativity in carving time for establishing relationships and very clear documentation of discussions and parents’ response may help in these situations. 

Parents also felt that having the ability to speak with other parents who have experienced making end-of-life decisions for their child in the past is extremely helpful. Many NICUs are beginning to see the benefit of peer-to-peer support. Previous NICU parents can provide tremendous help to parents, either as a hospital-based or community-based program. Research shows that the most successful programs are ones that connect with medical providers (5). 

Things that hindered decision-making from the parents’ perspective are important to acknowledge. Many felt bombarded with information from multiple providers that interact with parents daily. Many expressed difficulties in comprehending the information presented and retaining complex explanations, thus hampering their ability to make decisions. During this dreaded experience, they did best with very simple and consistent explanations given their state of mind. Better yet, many felt they were better able to process information in a written format that they could review after discussion. 

Parents also acknowledge conflicting emotions between what is best for the infant as opposed to what they, as parents had wanted, were very difficult to endure. Maintaining some level of hope throughout the decision-making process was important to them. In fact, some parents expressed that trust for the medical team was hampered when no level of hope was expressed by the health care team. While we may feel that expression of any hope undermines our message of futility, parents felt that maintaining some level of hope, albeit slim, made the providers more credible and trustworthy. 

The truth is, there is considerable groundwork the NICU team must do long before the parent of a moribund infant is approached for this conversation. The American Academy of Pediatrics published “Guidance on Foregoing Life-Sustaining Medical Treatment” clearly identifies process guidance for further review, and it is a good place to use to evaluate how the process of your NICU compares. (3) 

Two concepts must be openly discussed by the team in any institution to improve our care. First, there must be agreement among the medical team that the practice to forego painful resuscitations at the end of life and instead offer peaceful deaths is ethical in futile situations. The definition of futility may be subjective and should be up for discussion as well. Reaching this consensus parents through this difficult time in a better way. 

References: 

1. American Academy of Pediatrics Committee on Fetus and Newborn. Non-initiation or withdrawal of intensive care for high-risk newborns. Pediatrics Feb 2007, 119 (2) 401- 403; DOI: 10.1542/peds.2006-3180 
2. Wall SN, Partridge JC. Death in the intensive care nursery: Physician practice of withdrawing life support. Pediatrics 1997; 99; 64-70 
3. Weise KL, Okun AL, Carter BS, Christian CW, COMMITTEE ON BIOETHICS, SECTION ON HOSPICE AND PALLIATIVE MEDICINE, COMMITTEE ON CHILD ABUSE AND NEGLECT. Guidance on forgoing life-sustaining medical treatment. Pediatrics Sep 2017, 140 (3) e20171905; DOI: 10.1542/peds.2017-1905 
4. Xafis V, Wilkinson D, Sullivan J. What information do parents need when facing end-of- life decisions for their child? A meta-synthesis of parental feedback. (2015) 14: 19. DOI: 10.1186/s12904-015-0024-0 
5. Hall SL, Ryan DJ, Beatty J, Grubbs L. Recommendations for peer-to-peer support for NICU parents. J Perinatol. 2015;35 Suppl 1(Suppl 1):S9-S13. doi:10.1038/jp.2015.143. 

The author has no conflicts to disclose