From Goals of Care to Improved Family Outcomes in the Neonatal Intensive Care Unit: Determining the Intervention

Parents of critically ill infants often face intense psychosocial challenges in the neonatal intensive care unit (NICU) that can lead to strong emotional responses.^1,2 The NICU experience can have untoward effects on mothers and fathers rooted in a marginalized role in protecting their babies. ³ Many parents report feelings of helplessness and separation from their child during this critical course. Perceiving their infant in pain or observing their child's fear and weakness have been described as key stressors.^4,5 The events in the NICU, and especially experiencing the death of an infant in the hospital, can lead to posttraumatic stress disorder (PTSD) and poor health outcomes for parents.^6,7

Unsatisfactory communication has been associated with increased rates of PTSD in family members of patients in the intensive care unit (ICU). ⁸ Research has found that impaired communication can lead to increased stress for parents of infants in the NICU as well.^9,10 Neonatal providers espouse a professional duty to provide open and honest information to facilitate parental decision making. ¹¹ In addition, they must be skilled in recognizing a family's sociocultural and religious perspectives. ¹² This family-centered imperative directs relationship building and should prompt providers to partner with parents in establishing goals of care that represent the baby's best interests and reflect the values of the family.

In this issue of the Journal of Palliative Medicine, Clarke-Pounder, et al. describe important methods in capturing the content of provider communication with families in the NICU. ¹³ Their research provides a vital proof of concept that neonatal providers and parents are willing to record bedside communication for the purpose of improvement. The work impressively captured the diminutive time parents' voices are active in bedside rounds as well as the paucity of attention paid to psychosocial concerns. Albeit a single-center, small pilot study, these results alone may prove invaluable in contributing to a root-cause analysis for poor communication in the NICU. These data should inspire broader investigation to inform how unsatisfactory communication may influence stress, anxiety, and long-term mental and physical outcomes for parents.

The lack of attention to psychosocial concerns and limiting a parent's contributions to daily rounds runs counter to research describing predictors of family satisfaction. ICU care is more valued if spiritual needs of the family are optimized. ¹⁴ Parents value religion and hope over medical talk in decisions regarding neonatal resuscitation. ¹⁵ Families express significantly increased satisfaction with provider communication as well as decreased physician conflict when they participate in a greater amount of the medical decision making conversation in the ICU. ¹⁶

Clarke-Pounder, et al. report findings that fail to prove the hypothesis that sharing family values and preferences with providers would increase dialogue about family concerns in the NICU. However, interpretation of this work should not go as far as to accept the null hypothesis. The authors discuss that by involving the family in a decision making tool, expectations may be recalibrated. Families in the intervention group expressed lower measures of satisfaction. The recalibration may have raised expectations, but the question remains whether bedside rounds are suitable for meaningful conversations meant to explore parental values.

Establishing daily care plans for critically ill neonates involves reviewing clinical input and titrating intensive measures of treatment through multidisciplinary coordination. Medical speak and compromised parental input may be unavoidable during daily work rounds in the demanding NICU setting. Perhaps the family-centered objective of bedside rounds needs to be recalibrated. It could be unrealistic to expect effective parent-centered integration in this granular data-driven process.

Measuring family-centered communication during rounds may not be the outcome of interest. This research incites further questions like whether satisfaction trends among families in the NICU would improve if they were provided a physical space separate from the cognitive and visceral bedside experience to personally explore goals of care with their baby's providers? Would additional beside visits by neonatologists or interdisciplinary providers to review care plans and integrate goals improve the psychosocial care of families?

Translating a decision making tool into improved family satisfaction may also be disproportionate to provider training. Physicians regularly dominate interactions with families, but maybe more concerning are the missed opportunities to identify, listen, and recognize emotional cues that inform value-driven preferences. ¹⁷ Skills in advanced communication can modulate dissatisfaction and, more importantly, lessen psychological distress in the ICU. ¹⁸ It remains unclear whether current simulation models of advanced communication training transfer to the bedside and impact quality of communication. ¹⁹ Further unclear is whether physicians' ability to build family-centered partnerships through improved communication can lessen the stress the ICU can impart on parents and families.

The next step in a family-centered intervention may be equipping providers with such enhanced communication skills coupled with aims to address what setting best allows them to attend to parental goals and values. Palliative care must embrace its call to disseminate such skills training across all specialties, including neonatology. This training should focus on how to develop goals of care and seek family values in shared decision making. More importantly, it should enhance expertise in interpreting diverse parental preferences and how they should inform provider recommendations. Research might then focus on whether these skills can improve satisfaction and lessen adverse psychosocial consequences for parents navigating intense clinical settings like the NICU.