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Special Series: Palliative Care

Early for Everyone

Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit

Quinn, Megan PhD, RN; Weiss, Alyssa B. MSN, NNP-BC; Crist, Janice D. PhD, RN, FWAN, FAAN

Editor(s): Fortney, Christine A. PhD, RN, Section Editor

Author Information
doi: 10.1097/ANC.0000000000000707
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The ability to relieve suffering in people who are seriously ill is perhaps the main commonality between all healthcare providers. The reduction of suffering and thus ability to enjoy an acceptable quality of life (QOL) is an essential goal for modern caregivers. The World Health Organization defines palliative care (PC) as “an approach that improves the quality of life of patients (adults and children) and their families who are facing problems associated with life-threatening illness.”1 While sometimes seen as being incompatible with curative treatment, goals of PC are not contrary to curative treatment; rather, PC is aimed at improving QOL and relieving suffering, which can be balanced with curative treatment in an attempt to achieve value-based goals of families.2,3

While awareness of PC has increased in recent years, this awareness has emphasized that end-of-life (EOL) care and the benefits of PC in early stages of any serious illness are not often recognized.4 Consequently, the concept of early PC is not well-defined for any population or discipline.5 This is especially true in the neonatal population where conditions commonly targeted for PC in children and adults are uncommon, and the challenges of seriously ill neonates are not readily understood outside the neonatal intensive care unit (NICU). Additionally, health disparities in both neonatal and maternal outcomes6–10 and provision of PC11–13 are presenting a growing threat to public health and the fight for health equity in the United States. Recently, researchers in pediatric PC have been calling attention to the need to expand the provision of PC from immediate EOL and bereavement care to a wider population and timeline of care determined by need rather than prognosis, while acknowledging existing barriers to effective PC in the NICU.3,4,14,15 Studies evaluating specific, interdisciplinary, family-centered, interventions in the NICU remain limited.14 Due to the lack of literature on early PC in the NICU, work from other populations was reviewed to determine early PC practices that may be relevant for neonatal care.


Multiple searches were conducted from January 2016 to April 2019. Searches were primarily conducted using PubMed and CINAHL databases, though some seminal articles were discovered through reference searching. Combinations of keywords were used to find relevant evidence. Common keywords searched were: neonate; NICU; palliative care; early palliative care; perinatal palliative care; pediatric palliative care; pediatric intensive care unit; family-centered care; hospice care; advanced care planning; palliative care consultant; decision-making; neonatal ethics; and EOL decisions. Evidence supporting implementation and interventions was limited to being published in the last 10 years, though exceptions were made for seminal or essential articles contributing to the field (eg, Melnyk et al's COPE trial).


Findings from the review of literature are outlined in the following section. First, key findings from literature relating to early PC but describing non-NICU populations are presented. Emerging elements of early PC in the NICU are derived from these findings along with findings from neonatal literature that support the significance of these elements. Finally, a hypothetical case study is presented to demonstrate the applicability of the early PC elements to the case of family with a complex, yet not uncommon, premature infant who is not expected to die.

Differentiating Early Palliative Care

Traditional PC grew out of a recognized need for specialized care of the dying and suffering, leading to the founding of hospices and the association with PC and EOL care. The connotation of hospice as a synonym for rather than a branch of PC has led to a body of literature and culture of practice that is dismissive of the palliative needs of people who are not dying but are seriously or chronically ill and have similar needs to those who receive EOL care. A universal difficulty across populations is in defining, quantifying, and measuring early PC. There is no single definition of early PC, and no shared understanding of how best to approach it in any setting.5 Most definitions of PC from major organizations, however, include a statement that PC should begin as early as possible after a serious diagnosis.1,2

Recently, the National Consensus Project for Quality Palliative Care (NCP) was convened to outline the delivery of quality PC and set standards of care for PC in the United States. Their work is organized into 8 domains of PC (see Figure 1) that should be addressed whenever a person is treated with PC, and all but 1 of these essential domains of PC are applicable to any person in any stage of serious illness, including many hospitalized neonates. This supports PC as appropriate for early intervention, regardless of age or anticipated proximity to EOL. In practice, however, PC is often not considered until a person is near death or at high risk of death.16 Evaluating evidence for early PC across populations allows identification of benefits and barriers to early PC that will contribute to understanding how best to apply early PC in the NICU.

Domains of palliative care, adapted from NCP, 2018.

Early Palliative Care in Other Populations

The study and practice of PC is most prominent in the adult population, and this is also true for early PC. Adults with cancer and their caregivers perceived early PC as helpful, and while they did not all express a need for PC services, none shared any negative experience of early PC.17,18 These adults described benefits of early PC such as enhanced problem-solving and coping, and positive feelings of empowerment and support. Adult PC is not free from the bias toward EOL that exists in neonatal PC; despite evidence that early PC intervention provides both benefits to patients and cost-savings, early PC is still underutilized.19 The usefulness of early PC for adults with chronic illness is gaining awareness, but also remains underutilized despite increased rates of survival, decreased cost of illness due to lower utilization of healthcare services, and improved mental health outcomes for adults who had early PC intervention.5

Serious and life-threatening illness is less common in children than in adults, but early PC is practiced in pediatric healthcare. As with adults, the majority of referrals to PC service in the pediatric population are for children diagnosed with cancer, though children with serious congenital or genetic conditions are also referred.20 The literature addressing PC in children describes relatively late delivery of PC and emphasis on EOL decision-making, as in the adult literature. This persistent late delivery of PC exists despite evidence that parents and children may benefit from and prefer earlier initiation of PC.21–23 Initiation of PC was viewed as “very helpful” by families of children with serious chronic health conditions and all would recommend it to similar families, even though their children were not expected to die.24 Pediatric intensivists reported that they desired activities from a PC consult associated with early PC such as care coordination between facilities and family support, rather than EOL interventions and medical management.25 Despite this, in another study pediatricians described their persistent belief that PC was synonymous with hospice care and would delay PC referral until a child's death was anticipated.16 The emphasis on family decision-making and the family-centered nature of most early PC interventions mean these findings may also translate to neonatal PC.

The field of perinatal PC supports pregnant women and families whose unborn children have been diagnosed with a serious health condition that may lead to death before, during, or shortly after birth.26 Families presented with a serious fetal diagnosis may suffer severe emotional distress, decisional conflict, and grieve the loss of the “normal” child and birth they anticipated.27 Perinatal PC programs have developed to address these needs by providing parents with information on their available options, providing emotional and psychosocial support, and guiding care planning regarding continuation of pregnancy, induction of labor, and PC during and after birth.26,28–31 Perinatal PC has been incorporated into programs emphasizing a continuum of PC throughout the lifespan, especially for children with conditions that are expected to be serious and chronic such as congenital heart defects.30,32 Since the goals of perinatal PC (ie, decision-making, care planning, and family support) can be carried forward throughout pregnancy and into infancy, these goals can be used as a guideline for early PC in neonates.

Early Palliative Care in the NICU

While other populations have a small amount of evidence addressing early PC, most literature addressing neonatal PC is focused on EOL care and infants who are expected to die imminently.4,33 EOL care is an important aspect of PC, and dying infants and their families certainly deserve the dignity and support that neonatal PC provides, but this narrow focus does a disservice to other infants and families needing support. The birth of a premature infant can lead parents to experience shock, guilt, anxiety, grief, and fear.34 Some parents grieve due to the loss of the birth experience they had envisioned, and ambiguous loss and posttraumatic distress can be present for long periods even after a successful discharge to home.35–37 While bereaved parents certainly experience deep, tangible losses, parents' uncertainty and anxiety about their infant's outcome and the grief over admission to the NICU is also valid to address with PC.

An exclusive focus on EOL limits and places barriers on the implementation and adoption of neonatal PC. Clinicians may be hesitant to consult a PC team or initiate a PC protocol if it stands as a symbol of imminent death. Clinicians and parents do not want to feel like they are “giving up” on the infant, and clinicians fear that they will be forced to relinquish care or abruptly stop curative treatment if they initiate PC.38–42 When PC symbolizes death, it may be less effective and underutilized due to this delay in care. It would also fail to address the needs of parents whose infants are seriously ill but are not considered likely to die. When triggers for PC consultation are broadened and the purpose and benefits experienced, however, clinicians and families may realize those benefits and increase utilization of services.43 When PC is initiated early in a disease process, even absent the likelihood of death, the focus may shift from death to decision-making, setting value-based goals, and building relationships between clinicians and families.

Parents are especially integral to neonatal PC because they are surrogate decision-makers, navigate the complex healthcare system, and bear the emotional, spiritual, and psychological burden of their infant's illness. While the focus of neonatal PC is always on upholding the human dignity of the infant, many PC interventions traditionally directed at the person with illness must be directed at the infant's parents because they carry these burdens of illness for their infant and are ultimately responsible for their infant's care.44–46 This is especially true for early PC, where goals are not always related to alleviation of physical symptoms but on more complex cognitive and social processes (ie, decision-making, care planning, and coping). When considering PC priorities, parents are perhaps in greater need of supportive care than their infant.


Shared Decision-Making

An essential part of PC at any stage of illness is decision-making. Decisions regarding resuscitation orders and life-prolonging treatments are commonly associated with PC, but decisions regarding curative treatment options, location of care, choice of caregivers, and symptom management options are also common.47 In the past several decades, a shift has occurred in previously paternalistic concepts of decision-making that has led to more autonomous healthcare decision-making; in the NICU this means that critical decisions are often left up to parents.48 This shift from paternalism to complete autonomy has not been entirely beneficial for parents, who have demonstrated a continued need for guidance and expert opinion from healthcare providers when making critical decisions.49–52

Shared decision-making is accomplished when a person or family and their healthcare provider make decisions in a partnership.53 Shared decision-making requires honest estimations of consequences, and clear communication of options and their consequences.53 Though early neonatal PC may not include life or death decisions, shared decision-making may still be utilized as a model to guide parents in decisions regarding surgical intervention, plan of care, and pharmacological approaches. Encouraging parents to collaborate actively in decision-making can help them regain a sense of control and affect feelings of parental role fulfillment.34 The degree to which parents may feel capable of or desire participating in decision-making may depend on individual parent characteristics, the emergent nature of the decision, and the potential for long-term consequences of a particular course of action.51,54,55 Implementing shared decision-making can be challenging for practitioners, however, and they may not understand how best to give guidance to family members acting as surrogate decision-makers.56

Care Planning

Care planning is a hallmark of early PC. Ideally, care planning evolves from the shared decision-making process, a natural progression from a discussion of values, hopes, and expectations with a person experiencing serious illness or that person's surrogate. Though similar, care planning in neonatal PC is distinct from shared decision-making in that it is goal-oriented and may not revolve around a key decision. Care planning in early neonatal PC may be viewed broadly as determination of a plan with overall goals of healthy development, symptom management, and timely discharge, goals that are ideally shared by parents and the NICU team.

With the rise of family-centered care in NICUs, parents are encouraged to be involved in all aspects of care.57–59 But the extent to which parents are welcome or encouraged to be involved in their child's care varies between NICUs, and may only include activities that exemplify “normal parenting” (ie, skin-to-skin holding, diapering, and feeding). Some efforts have been made to involve parents in care planning by inviting them to participate in routine rounds made by the healthcare team in which the infant's plan of care is discussed, and a course of action decided.60,61 Current evidence, however, has exposed the token participation that can characterize this kind of parental involvement in care planning and decision-making.62

Family conferences also tend to place parents in the role of a passive participant rather than an active guide of discussion and may act more as forums for formal updates by the healthcare team rather than an environment for collaborative care planning.63 These conversations may not serve parents' needs because healthcare team members generally speak more about functional and health needs rather than QOL, which is a primary concern for parents.64 Estimations and perceptions of prognosis often differ between clinicians and parents after such conferences, with clinicians often presenting a more optimistic view than they truly believe.64 These suboptimal attempts at family-centered care planning may give NICU teams a sense of being inclusive of family while perpetuating a practice that invites parents to a table that is still led by the healthcare team. Including care planning as an essential part of a parent-centered framework for early PC in the NICU and re-orienting the care planning experience toward collaboration with parents can be a critical step in providing family-centered PC.

Support for Coping With Distress

Supporting parents during a stressful NICU admission is an element of early neonatal PC that has been addressed in existing literature. It is well-understood that having a child in the NICU, even with noncritical illness, is distressing for parents.65–70 This distress can be so significant that it leads to increased risks of anxiety, depression, and posttraumatic distress in NICU parents, even after their child leaves the hospital.71–74 Though most NICU care providers are aware of this parental distress, there are not any standard interventions across NICUs, and available services such as hospital-supported peer groups, mental health service availability, and parent-focused programs vary widely including many institutions with no formal support.75–78

There is no universal approach to parental support, and because parents are not direct patients, there may be barriers to providing mental health support for them as caregivers. Bereavement support before and after EOL is a common feature in most NICUs, but providers are not necessarily trained to best support parents whose children do not meet such narrow criteria. A common function of early PC in other populations is to address the distress caused by the diagnosis of a serious illness, and to facilitate healthy coping in the persons and their family.47 Existing evidence that outlines the significant consequences of NICU-related distress in parents supports relieving or mitigating this distress and should be a priority in all neonatal PC.

Limitations of Prior Research

The evidence supporting PC across populations to improve QOL is abundant, so much so that national and international organizations support PC and have created practice guidelines.47

Much of the most rigorous evidence, however, is found among adult populations with specific diagnoses. There are few highly rigorous studies, such as randomized controlled trials, that have been conducted evaluating patient and family outcomes after early PC interventions, and only a few of these directly inform PC for the parents of neonates. The varied definitions of early PC, limited description of interventions involved in early PC, and inconsistent descriptions of family involvement continue to limit the applicability of the evidence, especially across populations.


The following case study is a hypothetical case intended to demonstrate how the early PC concepts discussed could be applied to a case of a premature infant who may not receive PC despite a complex health condition due to the lack of a terminal diagnosis. It is not the authors' intention to present the ideal or perfect application of these concepts, but rather to encourage NICU nurses and other health professionals to consider the value of integration of early PC absent from the expectation of death.

Mary was a 29-year-old G3P0 woman with a history of spontaneous abortions with her previous 2 pregnancies. She presented to labor and delivery at 24 weeks following abdominal cramping and spotting. Upon examination, Mary was found to be 3 cm dilated. She was placed on bed rest, hydrated with intravenous fluids, received betamethasone, and was given terbutaline to decrease her contractions. Mary was distressed about the possibility of losing another infant, so the labor and delivery staff requested a neonatal consult to counsel Mary on what she might expect if the infant were to be delivered imminently. A neonatologist from the facility's NICU visited Mary and her husband Matt and discussed what they might expect after delivering their infant at 24 weeks' gestation. The couple were told that the estimated survival rate was 39% and survival without profound neurological impairment was estimated at 29%. This news was devastating to the couple. The neonatologist gave Mary and Matt the choice to provide comfort care only after delivery rather than resuscitation, but this prospect was unimaginable to the couple. The neonatologist suggested that the neonatal PC team visit the parents. Mary worried that this meant the neonatologist thought her infant was going to die.

The neonatal PC team consisted of a nurse practitioner, 2 registered nurses, and a social worker. Upon their arrival, Mary expressed her wish for full resuscitation and all available medical measures to save her infant. The team quickly reassured her that her wishes would be respected and explained that the purpose of the PC team was not exclusively to support EOL care. They would be available to help provide support during the NICU stay, since many parents found it an overwhelming and life-changing experience. They explained that a member of the neonatal PC team would meet with the couple weekly, offering emotional support, discussing their infant's care plan, and helping them work through decisions they were asked to make.

Labor progressed for Mary despite interventions. Baby Noah was born at 244/7 weeks' gestation by vaginal delivery and weighed 540 g. Noah had minimal respiratory effort upon delivery and required positive pressure ventilation via a mask. Despite continued stimulation, mask ventilation, and suctioning, Noah's heart rate remained below 60 beats per minute. His 1-minute Apgar score was 3. An endotracheal tube was required and placed on the second attempt after which Noah's heart rate increased quickly to 130 beats per minute and his color, tone, and reflexes improved. His 5- and 10-minute Apgar scores were 7 and 8, respectively.

During the next 24 hours, Noah remained in a stable but critical condition, as he received 1 dose of surfactant and remained mechanically ventilated. The NICU team updated Noah's parents regularly, but the new parents did not know what questions to ask or understand the healthcare jargon they were hearing. They were concerned with what to expect for an infant at this gestation and whether Noah had developed the complications discussed prior to delivery. Mary and Matt felt powerless to help their son, and very uncertain about the future. The PC team acknowledged those feelings and reinforced NICU nurses' suggestions that they could help Noah by providing human milk, positive containment, and being present during hands-on care times.

On day of life (DOL) 1, Noah's blood pressure dropped suddenly and he required multiple saline boluses and a blood transfusion before he was 48 hours old. Due to his lability and poor Apgar scores, Noah had his first cranial ultrasound on DOL 3. The ultrasound revealed a left-sided grade II intraventricular hemorrhage (IVH) and a right-sided grade III IVH. The news that their infant was alive but could have significant neurodevelopmental challenges was devastating to Noah's parents. The PC team again counseled Noah's parents offering additional clarification and explanation of IVH, the possible long-term impacts to Noah and options they might have. With the support of the PC and NICU team, Noah's parents made the decision to continue his care to the fullest extent. A cranial ultrasound on DOL 7 revealed the left IVH had extended to a grade III IVH. Serial ultrasounds were repeated, which found Noah's IVHs had no further extension, after which the NICU team decided to repeat cranial ultrasounds monthly.

Noah's parents were present for daily bedside rounds during his first week of life. These interdisciplinary rounds included an attending neonatologist, 2 pediatric resident physicians, a nurse practitioner, a nutritionist, a respiratory therapist, and Noah's bedside nurse. Noah's current condition was discussed in great detail and a summary of the plan of care was presented at the conclusion. Mary and Matt found it difficult to initiate conversations or ask questions during rounds despite invitations from the healthcare team; they were intimidated by the number of providers at rounds, they did not feel confident that they knew the “right” questions to ask, and were overwhelmed by their worries about the future. When a member of the PC team visited Mary and asked how planning Noah's care was going, she expressed these thoughts. By asking Mary and Matt about their personal values and hopes for Noah, the PC team was able to help the couple determine questions that they needed answers to right away and a few questions that they could ask each time during rounds to help them understand the plan and advocate for desired changes. Over time, their access to the PC team and their increasing understanding of Noah's care increased their confidence in asking complex questions, requesting clarification of unfamiliar terms, and helped them understand how the NICU team was caring for their infant. The PC team continued to meet with Noah's parents and the NICU team weekly to understand his prognosis and care plan to better support his parents.

After 3 weeks of mechanical ventilation, including 2 reintubations, Noah was extubated to nasal continuous positive airway pressure (CPAP) successfully. The PC team continued to check in with Noah's parents weekly to answer any questions and offer assistance in coping with being a NICU family. They worked with the social worker in the NICU to provide Mary and Matt with resources connecting them with former NICU parent mentors and both local and online parent communities. After asking about their usual methods of coping, Matt shared that he had been diagnosed with an anxiety disorder several years ago and felt that many days he could not face coming to the NICU and seeing his son so fragile. The PC consultant validated and normalized Matt's feelings and behavior by explaining that anxiety is extremely common among NICU parents and can be worse for parents with a history of mental health challenges. The consultant encouraged him to care for his mental health and connected him with mental health resources in the community. Mary was concerned about long-term consequences of IVH, so the team also spoke with them about possible ventriculomegaly and how that could be resolved when Noah was older.

On DOL 45, Noah had a cranial ultrasound that revealed increasing ventriculomegaly. During rounds the following morning, the healthcare staff discussed the need to place a ventricular reservoir to address the increasing hydrocephaly with Noah's parents. A plan was made to have Mary and Matt meet with the PC team to discuss the newest plan of care. Meeting with the PC team ahead of the neurosurgeon allowed Mary and Matt to consider the information they needed to know and formulate questions for the surgeon. Mary and Matt felt confident to participate fully in the discussion and ask questions that helped them understand the implications of having a reservoir and what to expect in the coming weeks. A reservoir was placed on DOL 50 and the neurosurgery team began removing the excess cerebrospinal fluid (CSF) daily.

Noah's recovery seemed to be progressing well, but on DOL 60 at 32 and 0/7 weeks' corrected gestational age, Mary noticed blood in his diaper during a diaper change and his nurse confirmed the presence of blood in his stool. An abdominal x-ray demonstrated pneumatosis and confirmed a diagnosis of necrotizing enterocolitis. Noah became increasingly apneic despite increasing his noninvasive respiratory support eventually requiring reintubation, which was distressing to his parents. They asked every caregiver who came to his bedside if he was going to die, which led his bedside nurse to contact the neonatal PC team.

Two PC team members familiar with Noah and his family immediately connected with Noah's parents. The PC team reassured Noah's parents that the healthcare team was doing everything possible to care for Noah and help him through this setback. The PC consultants offered hope that Noah's condition would improve but did speak frankly with Mary and Matt about the possibility of further deterioration despite treatment and that Noah may die. Previous consultations with his parents had included discussions about QOL and the hopes they had for Noah, enabling them to draw on their established relationship and trust to ask how they might want to spend his last days if he continued to deteriorate. They reassured Noah's parents that this was not imminent, but that this conversation would help the healthcare team understand how they felt about all matters related to Noah's care. Having ongoing engagement with the PC team and open dialog helped alleviate some of the distress and uncertainty for Matt and Mary.

After a week on the ventilator, Noah was able to be extubated again to CPAP. Noah resumed enteral feedings after bowel rest and antibiotic therapy, and days passed uneventfully as Noah was weaned from his CPAP to a nasal cannula and began feeding by breast and bottle. On DOL 94, the consulting neurosurgeon decided to pause his daily reservoir tap to see whether Noah could tolerate having less CSF removed, but this resulted in increased apnea/bradycardia spells. The neurosurgeon called Mary and delivered the news that they would likely have to proceed with placing a ventriculoperitoneal shunt. Mary arrived at the NICU shortly after, tearful and worried, but the neurosurgeon was unavailable. Noah's nurse notified a member of the PC team that Mary was upset and may benefit from their care. The PC consultant addressed Mary's emotional needs and helped her identify her feelings and worries. The PC consultant requested a meeting with the neurosurgeon, Mary and Matt, the PC consultant, and one of Noah's primary nurses to discuss the procedure together and determine best next steps for Noah. During this meeting, the neurosurgeon was able to explain the pros and cons of progressing with or declining the procedure, and Noah's parents decided that the shunt procedure would be best for their son.

Noah's postoperative recovery was uneventful and by DOL 124 he was taking all feedings by mouth, so the healthcare team began preparing for his discharge home. He continued to require supplemental oxygen via nasal cannula, and would require an oxygen delivery system, a monitor and pulse oximeter at home. Mary and Matt were overwhelmed by the amount of equipment and follow-up care they would be required to manage for Noah on their own. The PC consultant helped alleviate some of their anxiety by answering their questions and reassuring them that they would continue to be accessible to help them coordinate Noah's care after discharge. The PC team also addressed some of the developmental challenges that may lie ahead. This included the fact that he may be delayed in meeting some developmental milestones and, as a result, would be seen at the early intervention clinic to ensure he received any necessary services. Feeling greatly relieved, Noah's parents were able to complete all discharge teaching to take Noah home. At DOL 143 at 45 weeks' corrected gestational age, Mary and Matt were able to take Noah home after being in the NICU for nearly 6 months.


The importance of early initiation of PC for people enduring serious illness is slowly being recognized by healthcare providers across populations. Despite this increasing recognition, minimal literature exists to concretely define and provide outcome measures for early PC in any population, which makes comparing outcomes and developing an early PC model difficult. This difficulty is more significant in the neonatal population because a bias toward equating PC with EOL and hospice care restricts the concept of PC to a model that does not encourage early intervention for nonterminal diagnoses, even though this has proven beneficial in other populations. Existing disparities of NICU outcomes and provision of PC present further challenges requiring urgent attention of researchers and clinicians, who should ensure PC interventions are inclusive of diverse families and do not contribute to disparities.

Parents of seriously ill newborns may especially benefit from early intervention because they bear all but the physical aspects of the illness for their child and are consequently at high risk for poor mental health outcomes such as depression, anxiety, and posttraumatic distress. The constructs of shared decision-making, care planning, and support with coping presented here are congruent with early PC practices in other populations but have yet to be explored as complementary constructs within a model of neonatal PC. It is essential to conceptualize and promote early initiation of PC for all seriously ill infants in the NICU to ameliorate the suffering of NICU families, and to evaluate whether early PC delivers on the benefits it has demonstrated in other populations.


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care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making

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