Bias and Disparities in Neonatal End-of-Life Care

Meet the Expert:

Terri Major-Kincade, MD, MPH, FAAP is a board-certified neonatologist and pediatrician with over 20 years of experience in clinical neonatology and health equity advocacy. She recently launched a full-time career in pediatric palliative care and hospice medicine and serves as the Medical Director of Pediatric Palliative Care at Children’s Memorial Hermann Hospital. As a Pampers’ Womb to World advisory board member, Dr. Major-Kincade has also been part of the P&G brand’s philanthropic efforts to improve maternal health outcomes with particular attention to maternal health equity. Her research interests include perinatal health disparities and inequities, provider-patient communication, implicit and explicit bias in health care, work-life balance, provider well-being, and increasing diversity in the healthcare workforce.

I. Case Presentation

The case is an incoming transport call from a referring Level III Neonatal Intensive Care Unit (NICU) to a regional referral Level IV NICU. Some details of the clinical case are omitted or changed to support anonymity. The conversation has been edited for brevity. Verbatim language is presented in quotes.

Referring Provider (RP):

Hi, we have a baby to refer to you. The baby was born at 29 weeks and 3 days and is now 9 days old. After birth, she was noted to have gasping and required intubation in the delivery room. She is currently on endotracheal tube continuous positive airway pressure (CPAP) with pressure support with spontaneous breathing and FiO2 .21. She previously failed extubation after 4 hours due to her inability to handle secretions. She has no suck or gag reflexes and has tongue movements that may be fasciculations. “The baby still moves, somehow, a little bit, more than at the beginning…I think parents and we; we would like the baby to be evaluated by you guys, especially neuro-wise.”

NICU Fellow (NF):

“We can definitely transport the baby for evaluation by our NICU Neurology team. This does not sound good at all. Have there been conversations about redirecting care at all? Just wondering if the severity or prognosis has been discussed with the family. Of course, we’re happy to transport the baby to see if we can provide the family with information. But I wasn’t sure if that was discussed as a possibility.”

RP:

“If you pull the tube, the baby is breathing, what do you do with that? I don’t think anyone has really talked to them about withdrawal of support because we were just seeing what happens with the baby, just day by day. I don’t think parents are really the not-do-anything type…The family is well-educated and have a good understanding, but I don’t think it has ever crossed their minds to think about withdrawal. In my experience, the Black population, they don’t go for it. They will just go to the end, you know?”

NF:

“Well, I think all parents try to make the most loving decisions for their children. Alright, we will be in touch.”

II. Perspective Taking and Reflection

How does the description of goals of care and potential redirection strike you?

How does the connection between the family’s race and their assumed treatment preferences strike you?

Author’s perspective (Dr. Tamiko Younge is a third-year NICU fellow, who identifies as a Black and Asian American cis woman):

Despite what seemed like severe neurologic injury without improvement over a week, it was unclear how forthcoming conversations about prognosis had been with the family. While I have become more experienced with difficult conversations during my training, I am by no means an expert and am still uncomfortable with these discussions. Perhaps this is something that I never want to be “comfortable” doing. My particular interest in palliative and end-of-life care in the NICU has meant I have actively tried to step into these roles, but I also have the privilege of working in a large academic referral NICU with multiple subspecialists including pediatric palliative Care to support my growth and learning. I recognize that these supports may not be as robust in other units, nonetheless, I think all families deserve direct and honest conversations about prognosis and end-of-life decisions, even if it is in the context of referring to another hospital for more information. I was concerned the family had not yet had frank conversations about their child’s prognosis and anticipated course of care at transfer, and this news would come as a shock with perhaps avoidable harm to the family.

It seemed like assumptions were being made about the parents’ wishes, though it was unclear to me if this was informed by conversations or other interactions or assumed based on stereotypes and bias. While I do not think one can ascribe treatment preferences based on one aspect of a person’s identity, I do believe one’s identity, lived experiences, and community inform personal values and treatment preferences. Race is part of identity and can shape these preferences. Perhaps the provider was recognizing something in that but overgeneralizing.

Dr. Terri Major-Kincade (TMK):

My initial response as a Black physician in both the neonatal and palliative care space is triple-fold: sadness, understanding, and anger. This perception that Black families do not typically go for compassionate redirection of care becomes a self-fulfilling prophecy. The literature on the adult population for Black communities especially bears out a higher likelihood of dying with technology, dying in the hospital, and lower utilization of palliative care and hospice services. When a provider responds “they don’t typically go for it,” I wonder if they are considering how often the service is offered or how often the service is denied by omission. How many families are represented in the “in my experience,” of those who refused, and of those, what is their refusal based upon? Was it based on prior experience with pediatric palliative care or prior experience with hospice and palliative care with an adult loved one who may have had a traumatic experience? Is the refusal embedded in mistrust, lack of transparency, or delayed care? My feelings of understanding are linked to the other words echoed by the provider, “I don’t think parents are really the not-do-anything type.” The belief that to regoal to comfort care means “not doing anything” is a bias unique to palliative care. When in fact, if provided in line with the family’s goals, wishes, and values, allowing natural death represents the most complete care. I wonder how many times this foundational bias impedes shared decision-making for all families and is possibly further exacerbated by other biases related to racial disparities. Some quick tips and suggested language are provided in Table 1.

Table 1.

Quick Tips and Potential Language for Difficult Conversations provided by Dr. Major-Kincade

Quick Tip	How would you discuss the prognosis or goals of care with the family described in the case?	How would you respond to the comment about the family’s race and treatment preferences?
Attend to emotions and provide empathetic responses 1	“I’m sorry you’re going through this. Do you have any worries or concerns that I can answer for you now?”	“Thanks so much for sharing that. I agree. Sometimes it can be really hard to know what families might want or prefer, particularly if our prior attempts to have these conversations have been met with resistance, or anger, or despair.” “Thanks for sharing that. I agree it can be hard to approach these conversations with any family. And even in specific cultures and ethnicities, every family is different. Do you think it would be helpful to explore the family’s wishes before transfer?”
The Warning Shot	“As you think about the hospital your baby is going to, I want to share that the medical team will do their evaluation, gather more information, and have additional discussions about what is most important to you for <Child’s name>.” “Would it be okay to share with you a worry we have? In our experience, other children who have brain injury like <Child’s name> may not survive. For those that do survive, they often require medical technology like a machine to assist with breathing, a feeding tube to help with eating, and additional services required for children who may not walk or talk independently.”	“These discussions can be very difficult for families and providers. This is a very tough situation. Given what you have shared, I wonder if providing a so-called “warning shot” might be helpful as the family thinks about what is to come.”
ASK TELL ASK	“For some families, it is helpful to hear how other families process at a time like this. Would it be helpful to share how some other families have processed this information? All families love their children and want their children to be here as long as possible. However, for some families, if being here as long as possible means a life with a breathing machine, feeding tube, or other technology, this choice would not honor the values they have for their family and would be seen as suffering. For other families being here as long as possible, including a life with technology such as a breathing machine or feeding tube would honor their values. Both families love their children very much and want their children to be here. As you think about the information being shared, think about what you would want for <Child’s name> or for yourself. Which family sounds most like you? What do you think?”	“Could you share some responses you’ve received with Black families before? What do you think that response stems from?” “I wonder if there are ways we can better understand this family’s hopes or worries as we consider transfer.”

^1.US Department of Veterans Affairs National Center for Ethics in Health Care. “Empathetic Responses Handout”: Goals of Care Conversations Training for Physicians, Advance Practice Registered Nurses, and Physician Assistants. January 3, 2019. Accessed October 1, 2024. https://bit.ly/3Y4vHMT

Most importantly, I am reminded that no culture is a monolith. Each family is unique and has their own lived experiences. I wonder why some families are allowed to explore their responses to different treatment options through the context of their values and others are denied this opportunity under the guise of helping them or avoiding unnecessary discomfort on the part of the provider as well as the family. I wonder how much ambiguity might be removed by naming the bias and partnering the bias with communication skills that in this case, would facilitate the beginning of a conversation that is sure to come at the receiving hospital. When these initial conversations do not happen, both the family and the receiving team face additional challenges that exacerbate barriers to equitable care. Inequity based on lack of opportunity for shared decision-making is one of the most insidious forms of bias, but also one that has the potential for the greatest harm as families unpack and navigate what it means to not have complete information for decision-making.

III. Objectives

• Describe existing literature on racial disparities in neonatal end-of-life care

• Discuss possible mechanisms and etiologies for these disparities

• Identify the utility and limitations of this data for informing patient care

• Implement pathways to provide high-quality, equitable, and antiracist palliative and end-of-life care for NICU families

IV. Key Terms

Neonatal Palliative Care:

Holistic and interdisciplinary care of the infant, parents/guardians, and family members that aims to alleviate and attend to physical, emotional, and spiritual suffering experienced by the infant, their family, and their community. It is a holistic approach to care that can be combined with cure-oriented, disease-modifying care, and increase at any time but especially when curative therapies are no longer deemed to be beneficial or appropriate.¹

Disparities in End-of-Life Care:

Differences between population groups in the way they access, experience, and receive healthcare at the end of life that are not due to preferences (choices based on full and accurate understanding of treatment options and availability of those options).^2,3

Social Determinants of Comfort:

Surrounding individual, social, and environmental conditions that influence whether, to what degree, and in what forms comfort measures are offered to and undertaken by patients and their families.⁴

Goal-Concordant Care:

Care at the end of life that is consistent with the preferences of the patient and their family, specifically in the location of death and intensity of care at the end of life.⁵

Shared Decision-Making:

A spectrum of decisions from those that are heavily directed by the medical team, through decisions made jointly between the patient and family and the medical team, to decisions made independently by the patient or family, with influence from each party in the decision varying based on the clinical situation and the patient or family’s preference.⁶

V. Discussion of Relevant Literature

End-of-life care is some of the most emotional and impactful care we provide in the NICU. As such, there is a greater risk of bias, prejudice, and stereotypes influencing clinical decisions and ultimately contributing to disparities in end-of-life care.⁷ Differences in intensity, place of death, and duration of life-sustaining therapies at the end of life may reflect family preferences. Some families may elect to take more intensive paths with an emphasis on life prolongation even when nearing the death of their infant. Individual treatment preferences oriented towards this emphasis may be similar among families with shared racial, ethnic, or cultural identities. Disparities in end-of-life care, by contrast, are differences in access and opportunities to have quality end-of-life care and are attributable to racist policies leading to discrimination and differential access to services. Both differences and disparities in end-of-life care reflect social determinants of comfort, which builds upon the concept of social determinants of health in recognition of the individual and socioecological contexts that influence providers and families caring for dying children.⁴

There is no uniform approach to end-of-life care, rather there is considerable variation in preferences across families. If guided by open and supportive conversations that seek to share medical information, assess a family’s understanding, and ascertain values and goals, the differences seen between racial groups in end-of-life care may reflect goal-concordant care arrived at through shared decision-making. On the other hand, insufficient training on behalf of providers to hold such conversations may contribute to end-of-life care disparities. All families are harmed when such conversations do not occur, but this harm occurs more frequently and deeply in families from marginalized and underserved backgrounds. As seen in this case where clinical uncertainty collides with complex and high emotions, avoiding such conversations can lead providers down a path based on assumptions or “choosing your own adventure,” wherein race and ethnicity blindly impact treatment decisions.

Growing evidence in pediatric and neonatal literature mirrors findings of racial differences and disparities in palliative and end-of-life care seen in the adult literature. This includes disparities in the mode of death and care intensity experienced at the end of life, referrals to palliative care, and opportunities for conversations around redirection of care. On the one hand, differences may be justifiable if they respect the autonomy of families and reflect their goals and values. However, assumptions and limited exploration of goals and values may lead to unjustifiable disparities. In this article, we discuss possible mechanisms that may lead to observable differences based in informed choice versus those that create inequities in end-of-life care. We also highlight some caveats and cautions when interpreting the available literature such as overstating the role of mistrust and concerns with using outcomes for non-Hispanic white families as reference or baseline.

Over the past several decades, the circumstances of death have changed in the NICU with deaths following withdrawal of life-sustaining therapies becoming more common than deaths following unsuccessful resuscitative efforts.⁸ Thus, there is a greater need and opportunity to support and prepare families to consider decisions to redirect care. Evidence suggests mode of death in the NICU may differ by race and ethnicity, with infants from minoritized racial groups experiencing higher-intensity care at the end of life. In a multicenter registry of deaths of premature infants, de-escalation or non-escalation of care occurred more often for non-Hispanic white infants than for non-Hispanic Black or Hispanic infants.⁹ In a retrospective review of deaths in the Children’s Hospital Neonatal Network Database, compared to white infants, Black infants had decreased odds of non-escalation at the end of life.¹⁰ Among infant decedents who received palliative care consultation in NICUs in the Southern United States, the majority of infants died after withdrawal of life-sustaining interventions, yet Black infants were more likely to receive cardiopulmonary resuscitation before death compared to white infants.¹¹

Factors underlying the racial and ethnic differences in intensity of care at the end of life remain poorly understood in the neonatal population. Observations that infants from racially marginalized groups experience higher intensity of care towards the end of life may reflect various combinations of familial wishes, presumptions on behalf of providers, availability of pediatric palliative care services, and intersections of socioeconomic variables that encompass social determinants of comfort. In a multicenter study of newborns delivered between 22 and 24 weeks’ gestation, Black compared to white birthing parent race was associated with a greater likelihood of attempted resuscitation even when controlling for center variability.¹² In a prospective qualitative study of women at periviable gestation with anticipated preterm delivery, the majority of non-white women focused on immediate survival, perseverance, and resilience, with an emphasis on exceptionalism and optimism.¹³ These narratives may lead some families, especially those from marginalized groups facing recurring discrimination, to lean towards trials of intensive care before redirection.

However, presuming racial and ethnic differences in end-of-life and palliative care are solely due to family preferences dangerously denies a long uncorrected history of racist policies and discriminatory healthcare practices. There is weighty evidence that the frequency and quality of discussions to consider redirection of care may vary by patient race. In a study from the Neonatal Research Network, among infants born between 22 and 28 weeks’ gestation, white families were more likely than Black or Hispanic families to have discussions of redirection of care.¹⁴ In a more recent study from this network, of infants born before 29 weeks’ gestation, Black and Hispanic families were less likely to have documentation of redirection of care discussions and redirection of care occurrences compared to white families.¹⁵ In contrast, in a single-center retrospective cohort study of infants that died in the NICU, there were equivalent rates of recommendation to limit or withhold life-sustaining medical therapies between Black and white families. White parents more often decided to withdraw life-sustaining therapies compared to Black parents, although this did not reach statistical significance, and most families, regardless of race, decided to redirect care for their child towards comfort.¹⁶ Perhaps with greater certainty of death, there is greater equity in conversations to withhold life-sustaining therapies. However, when there is greater uncertainty, as in the case of infants born extremely premature, perhaps conversations are less equitable in presenting all available paths to families.

As demonstrated in the vignette, the absence of these conversations may lead to a self-fulfilling prophecy of higher-intensity end-of-life care for infants from racially minoritized groups that may not align with family preferences. When available, pediatric palliative care specialists may be consulted to help guide family conversations, especially in life-limiting conditions and in preparing for the end of life. Conversations about death and dying and prognosis may occur more frequently and earlier among families exposed to specialty palliative care consultation.¹⁷ However, evidence suggests that access to this important layer of support differs by race with non-white children receiving lower rates of palliative care referrals and consults compared to white children.^18,19 Furthermore, research suggests palliative care may be underutilized for NICU patients and their families.^20,21 Expansion of pediatric palliative care services including access to specialists as well as deepening primary palliative care skills for neonatology providers would likely help mitigate disparities seen in end-of-life care.

The quality of goals-of-care and other difficult conversations may be limited by gaps in NICU training. In a national survey of NICU fellows, only 59% described formal training in communication skills. Despite this apparent deficit, 94% of fellows reported being sometimes or always responsible for leading family meetings to discuss goals of care.²² In simulation encounters of counseling for an anticipated delivery at periviable gestation, obstetric and neonatology attendings discussed clinical issues and available treatment options most of the time. However, they rarely explored goals and values to guide shared decision-making. There is undoubtedly opportunity to improve goals-of-care conversations through communication training.²³ Recognizing this essential skill, the Accreditation Council for Graduate Medical Education recently emphasized “Complex Communication with Patients’ Families around Serious News” as a key milestone for neonatology trainees.²⁴ Training could be further enhanced with attention to equity in end-of-life care and social determinants of comfort.

Word choice may have a profound impact on our communication with families. In family conferences for critically ill infants, clinicians used the words die, death, dying, or stillborn less often than families, and typically when families requested clarification.²⁵ Medical jargon and high-literacy vocabulary can also impede understanding. Interviews with NICU parents revealed terms such as “Neonatologist,” “gestational age,” and “mild or no developmental problems” were generally poorly understood, especially among parents with lower educational attainment.²⁶ A poorer understanding of prognosis may lead families to pursue higher-intensity care when the medical team may feel this path is nonbeneficial and may contribute to racial disparities in end-of-life care.^27,28 Given the intersections of race and other socioeconomic factors including preferred language and education, word choice has the potential to either exacerbate or help mitigate racial disparities in end-of-life care.

An important caveat in the previously described literature is that white children were utilized as the reference group or baseline in all studies. While such comparisons highlight racial differences between groups and may be appropriate for outcomes such as infant mortality or preterm birth, they may not serve as well for interpreting disparate outcomes related to end-of-life care. When we designate the experience of one group to be the comparator, we risk implying that the experiences of this group represent “appropriate” or “correct” end-of-life care. Quality benchmarks for end-of-life care are challenging in all age groups, but especially in pediatrics, as this aspect of healthcare is deeply personal.^29,30 We should be concerned that the recommendations of the “standard” are not based on the community served. For example, in a recent project to identify pediatric palliative care quality markers, 88% of the national survey respondents who reviewed the proposed items identified as white and were mostly palliative care providers.³¹ This suggests that the voices of families and patients, especially those from marginalized groups, have not been adequately integrated into the paradigm of “good” end-of-life care. A better indicator of where we stand would be to know treatment preferences for families through high-quality advance care planning and be able to match those preferences with goal-concordant outcomes.

Distrust of healthcare systems and medical providers is an oft-cited explanation for disparities in end-of-life care.³² However, framing the role of trust in this way obscures the role of racist policies that produce distrust. The perspective of marginalized groups as distrusting absolves us as providers of the responsibility to be trustworthy and use our power to create antiracist policies within our spheres of influence. Poor communication, including a lack of transparency, can cause or exacerbate mistrust. Could the family in the vignette feel they were being given incomplete information or limited options in the care of their child? Contributing to the mistrust narrative is the “pathologizing of patients deemed to be resistant to palliative care.”³³ At the end of life or in the setting of a life-limiting diagnosis, providers may become disgruntled or disparaging about a family’s reluctance to redirect care or their decision to pursue further disease-modifying therapies. Emotions such as frustration and moral distress are common in such situations and may affect our actions and care, particularly when we feel that the family is pursuing care options that do not align with our personal preferences. We cannot presume to know how a family will weigh the perceived burdens and benefits of any path, but we should presume that the family is acting with the best intentions for their child. Perhaps we can take these moments to pause and reflect on our own values and beliefs about the burdens and benefits of available treatment options and if and how we discuss these options with families.

TMK:

I would highlight a different perspective of end-of-life care and death in the hospital through the lived experience, particularly of Black families. In the vignette, the provider said Black families “don’t tend to go for it [regoaling care].” As stated previously, providers often attribute this to mistrust, but I want to challenge us to think about death and dying for the Black community in the United States. Historically, death and dying happened outside of hospitals because there were limited hospitals that cared for persons of color and when they did provide care. it was often substandard. Imagine that the hospital where you are practicing may be a hospital in which some multi-generational family members were denied care. Maybe this family member even died outside the emergency room, or at home after being denied transportation to the hospital. For some marginalized families, death in the hospital may represent a desired outcome. What does death at home represent versus death in the hospital? Does death in the hospital mean one is finally getting services previously denied? Does it right a prior wrong? Perhaps yes, perhaps no, but we must be careful not to paint death at home in a light that may not align with the family’s values, challenges, and prior experiences, which may not have been managed with a trauma-informed lens. Additionally, imagine that regoaling to comfort care for some families does not represent “doing nothing” but represents doing everything they could to preserve life but minimize suffering in accordance with their hopes and wishes. To not offer this path for some families may represent not doing everything they could to provide a peaceful death and a moment of control amid so many moments without control. As noted above, the best way to mitigate unknowns and avoid exacerbation of distress at the end of life is with high-quality advance care planning that centers the family and does not fulfill the biases of the healthcare team.

VI. Conclusion

Providing equitable care to NICU families necessitates equitable care at the end of life. Limited skills in communicating serious news and exploring the values and goals of families may deepen disparities in end-of-life care. As we seek to develop and apply these skills, we must be cautious to presume that a family will choose a particular path or that there is an appropriate or correct direction of care in any given situation. Humility and openness to the many components of a lived experience and the socioecological context that may guide a family’s decision in this care can help us provide equitable care to families throughout their NICU journeys.

Moving Forward

Health professionals can take individual actions and work within their interdisciplinary teams and institutions to cultivate their skills as palliative care providers and create change to provide more equitable and improved end-of-life care for all families (Table 2). At the individual level, providers can seek further training to support their communication skills in discussing goals of care and understand their biases. Interdisciplinary teams can pre-brief and debrief family conferences to discuss knowns and unknowns that may have been filled in by assumptions. At the institutional level, discussions of social determinants of comfort can be included in mortality conferences and building protocols and practice guidance for end-of-life care. When palliative care services are available, referrals to these services can be reviewed to ensure equitable access.

Table 2.

Suggested activities and additional resources for individuals, interdisciplinary teams, and institutions after reading the case.

Level	Personnel Involved	Suggested Activities and Additional Resources
Individuals	Any person caring for critically ill infants and providing palliative and end-of-life care (including physicians, advance practice providers, nurses, therapists, social workers, pharmacists, etc.).	Reflect on your care practices and biases What are your beliefs about end-of-life care and treatment preferences for families from various backgrounds? When might you fall back on general beliefs or stereotypes rather than individual experiences or conversations? New York Times Point of View: Who, Me? Biased? https://nyti.ms/3X9I20A Harvard University Implicit Association Test https://bit.ly/4dQpeuC Enhance your primary palliative care and advance care planning skills If you have only MINUTES use these brief resources to prepare for and guide difficult conversations: Serious Illness Conversation Guides1 https://bit.ly/3UoKdwJ VitalTalk (Smart Phone App) https://www.vitaltalk.org/vitaltalk-apps/ HOUSE Model of Procedural Communication2 https://bit.ly/3UnWPEe Courageous Parents Network: Pediatrician’s Role in Serious Illness https://bit.ly/3Um0Qck If you have only HOURS consider these organizations with courses and webinars: AAP: EQUIPP Talking About Serious Illness Potential Barriers and Suggested Ideas for Change https://bit.ly/40bWB74 California State University Shiley Haynes Institute for Palliative Care https://bit.ly/4hk4k99 Pediatric Palliative Care Coalition https://www.ppcc-pa.org/ Respecting Choices (ACP facilitator) https://respectingchoices.org/ Five Wishes (ACP facilitator) https://www.fivewishes.org/ VitalTalk https://chooseyourpath.vitaltalk.org/ Resolve Through Sharing Bereavement Training https://www.resolvethroughsharing.org/ If you have DAYS to MONTHS you can seek deeper training to develop expertise: Harvard Palliative Care Education and Practice Course (PCEP) https://bit.ly/3Un50R8 AAP Resilience in the Face of Grief and Loss Curriculum https://bit.ly/40hA20J ELNEC (End-of-Life Nursing Consortium) https://www.aacnnursing.org/elnec University of Washington Palliative Care Course https://pctc.uw.edu/ University of Maryland Certificate or Masters in Pediatric Palliative Care https://bit.ly/3UiDZP1
Care Teams	Interdisciplinary teams consisting of various health care professionals that care for critically ill infants with poor or uncertain prognoses.	Identify palliative care services and adjacent supports (e.g., Social Work, memory making, bereavement support) available at your institution and community Perinatal Hospice and Palliative Care https://www.perinatalhospice.org/ Take time to have serious and difficult conversations with families Find a private space, allow enough time, limit interruptions, take a seat Perform a team pre-brief, state out loud the potential bias or assumptions about the family’s beliefs or preferences Ask families how they prefer to receive information (details and numbers, general overview/big picture, worse case versus best case versus most likely, other loved ones they want to be involved) Build rapport by asking the family what is most important to their family or child and what they hope to discuss Start with the family’s needs before proceeding with the medical team’s agenda. Ask for permission to share worries and concerns When considering a specific decision, consider or ask the family if a recommendation would be appropriate or helpful to them Debrief after meeting with family to check how the conversation went, recognizing that team members view the conversation through different lenses Document any important treatment preferences that were discussed (e.g. code status) and any next steps or timeline for another meeting
Institutions	A dedicated interdisciplinary group responsible for improving palliative and end-of-life care for critically ill infants and their families. Members may include unit leadership, clinicians (NICU, Palliative Care, and other subspecialties), Nurses, Social Workers, Pharmacists, family representatives, and Medical Ethicists).	Review end-of-life cases with social determinants of comfort in mind Discuss the quality of end-of-life care, personalized decision-making processes, goal-concurrent care, and social determinants of comfort at mortality conferences Establish Mortality and Morbidity Boards to review cases to include tracking end-of-life care intensity markers and evaluate for health equity Work towards quality improvement and health equity in NICU palliative care Develop some standard criteria for referral to palliative care to increase access and avoid bias of referral by provider discretion Review palliative care referrals including patient demographics Are certain patients and families referred to palliative care? What are the potential referral gaps at your institution? Does this reflect a bias? Provide language or suggested scripts to providers to discuss the role of palliative care in the overall care of the patient and family Incorporate primary palliative care training in Neonatal-Perinatal Medicine Fellowship Provide opportunities for trainees to practice difficult conversations in low-stakes situations such as standardized patient simulation4 https://doi.org/10.15766/mep_2374-8265.10284 Include family counseling and end-of-life care encounters in procedure logs Include discussions of social determinants of health and comfort in learning sessions Build pathways and practice guidelines for palliative and end-of-life care scenarios that encompass opportunities for interdisciplinary meetings and provide clear maps of treatment pathways (curative, palliative, and end-of-life care) Include suggested language and strategies to mitigate bias (e.g., “Some families…other families…”)3 Consider using guides from Courageous Parents Network https://bit.ly/4hkvoVH

ACP=Advance Care Planning

^1.van Breemen C, Johnston J, Carwana M, Louie P. Serious Illness Conversations in Pediatrics: A Case Review. Children (Basel). 2020;7(8):102. doi:10.3390/children7080102

^2.Erondu MU, Mahoney DP. Palliative care, resuscitation status, and end-of-life considerations in pediatric anesthesia. Curr Opinion Anaesthesiology. 2020;33(3):354–360

^3.Haward MF, Payot A, Feudtner C, Janvier A. Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions. Seminars in Perinatology. 2022;46(2):151551

^4.Brock K, Cohen H, Sourkes B, et al. Teaching Pediatric Fellows Palliative Care Through Simulation and Video Intervention: A Practical Guide to Implementation. MedEdPORTAL. 11:10284. doi:10.15766/mep_2374-8265.10284

Further Reading

• Handbook of Perinatal and Neonatal Palliative Care³⁴

• The Case for Advance Care Planning in the NICU³⁵

Case Conclusion

The family was transferred and with interdisciplinary support from NICU providers, NICU neurologists, the Palliative Care Team, bedside nurses, and social workers, made the difficult and loving decision to extubate their baby to allow natural death.

American Board of Pediatrics Neonatal-Perinatal Content Specification

• Know the components of bereavement counseling prior to, during, and after the death of a newborn infant, including palliative care.