Palliative care options for neonates are necessary due to neonates having the highest death rate in the pediatric population,1 with prematurity cited as the leading cause of death.2 Palliative care for neonates may be appropriate for those born in the following circumstances: antenatal diagnosis of a life-limiting condition; neonates born at the margin of viability; neonates diagnosed with a life-limiting condition at birth or in the early neonatal period; and neonates who deteriorate and for whom palliative care is determined by the parents and the primary care team as the best course of action.3
Neonatal palliative care (NPC) is a relatively new model of care in neonatology, first appearing in the medical literature in the early 1980s4 and in the media in the late 1970s.5 Conceptually, palliative care for neonates was developed largely as on outcome of Whitfield et al's4 article, likely one of the first scientific articles to refer to palliative care in the neonatal context, buoyed by concerns that technological skills in the neonatal unit had taken a backseat to contemporaneous moral and ethical advances of the time. Advising the family discontinuing aggressive curative options and acknowledging that this method had its limitations and helping them to understand that palliative care might be an option was summarily dismissed as “onerous but necessary” for the neonatologist. With this article, however, an integrated approach to palliative care for the “hopelessly sick newborn” was proposed perhaps for the first time, focusing on the areas of decision-making, the physical environment, family involvement in care, and staff training. Since this time, NPC has been defined, and redefined.
There are many different terms used that all relate to NPC: “Palliative care,” “hospice care,” and “end-of-life care” all strive to provide “comfort care.” Palliative care begins at the point of diagnosis, at the same time as treatment. “Hospice care” can be delivered in any setting, including the home, assisted living facility, or inpatient hospital and begins after treatment of the disease has ceased and when the person is not going to survive the illness. Hospice care is most often offered only when the person is expected to live 6 months or less. “End-of-life” care is a term generally used for the final stages of palliative care when the illness is prolonged. Further, the health literature reveals a milieu of terminology in relation to NPC including the clumping together of heterogeneous models—“children's palliative care,” “perinatal palliative care,” and “neonatal palliative care.” In terms of the latter, is there really a difference between palliative care for children, neonates, and perinates? Is a “one model fits all” approach fit for purpose? Are they, indeed, homogenous?
A perinate (derived from perinatal, or “around birth”) is defined as being approximately 1 month before, to 1 month after, birth. Clearly, this overlaps the neonatal period, that is, an infant who is 4 weeks old or younger, corrected age. The primary difference, then, between neonatal and perinatal palliative care is that the latter emphasizes interdisciplinary team management in a coordinated, comprehensive manner throughout the pregnancy, birth, and into the postnatal period.6 Hospice care focuses on care, not cure, in the last 6 months of a person's life, after curative treatments have been discontinued.7 In the literature, palliative care is often used synonymously with terms such as “end-of-life care,” “terminal care,” and “hospice care.” This leads to a prevalent belief that palliative care is only for patients in the final stages of life,8 but this is untrue. Rather, palliative care is the treatment and prevention of suffering with progressive disease or serious injury but patients are not necessarily dying or in their final stage of life.9 Given the often prolonged and uncertain prognoses of neonatal and childhood conditions, a palliative focus alongside curative therapies is an essential aspect of pediatric and neonatal palliative care recommendations.10–12
Before a conceptual definition of NPC can be espoused, it is first necessary to sort through the definitions in this space. “Adult palliative care,” “children's palliative care,” “perinatal palliative care,” and “neonatal palliative care” all contain similar elements, namely: improving quality of life; the relief of suffering; and the treatment of physical problems, as well as psychosocial and spiritual care. The obvious difference is the recipient age group: Children's palliative care is a recipient age group spanning from the neonatal period until the late-teens. That said, neonates constitute approximately one-third of the total number of children with a medical complexity.13 NPC is fundamentally different to children's palliative care, however. This is due to neonates (and infants) being unable to verbally communicate their needs and feelings. They are also more dependent on technology in order to remain stable.14
“Comfort care” and “palliative care,” though often used synonymously, are quite separate in that comfort care is an element of all care provided to the unwell neonate and is also an element of palliative care. Palliative care, however, is argued so much more than comfort care and goes beyond the use of sedatives and analgesics.9 “Hospice,” “comfort,” and “end-of-life” care are distinct aspects of care provided within the broader palliative care model and insofar inform the larger discussion in this article.
The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential elements. A conceptual definition approach is used here because it describes NPC in terms of its abstract characteristics and relationships to other conceptual entities that will be outlined in the major and subthemes in this article. There is a need to consistently define palliative care for neonates because, while we have made tremendous progress in this area of practice, we still face tremendous challenges. A conceptual definition will assist in moving the NPC movement forward by suggesting a consistent and concepts-based approach.
The following databases were searched: CINAHL Complete (via EBSCOhost), Cochrane Library, MEDLINE (via EBSCOhost), PsycINFO (via Ovid), and PubMed. Search terms used were neonatal perinatal palliative care (as subject terms) and further limiting search terms including “definitions” and “defined.” Only articles from peer-reviewed journals were reviewed, limited to the English language and published since 2000. The seminal definition of NPC was published in 2002 by Catlin and Carter.16 The literature review found that, since 2002, most articles cited this definition, but it was found that further research into NPC had extended upon this definition by identifying further concepts. Table 1 outlines the study characteristics included in the review. Further searches explored the concepts were identified in Table 2 as search terms to include 13 articles that were thought to broaden the definition of NPC. Influential institutions (n = 6) that had previously defined NPC and children's palliative care were also included in the literature review (see Table 1).
TABLE 1. -
Selected Sources Rationale for Inclusion
Definition/Addition of Concepts
Definition/Addition of Concepts
||Used Catlin and Carter,16 added concept of meeting the emotional distress of the infant's parents and siblings
||American Academy of Pediatrics17
||Defined “children's palliative care,” concepts built upon in subsequent publications
|Bennett et al18
||Perinatal PC focus, added concept of facilitated open communication between family members and caregivers
||British Association of Perinatal Medicine19
||Cites Together for Short Lives (from 200920) further adds perinatal palliative care (added to TFL in 2017)
|Catlin and Carter16
||Seminal definition of NPC, commonly cited definition or elements thereof
||Institute of Medicine of the National Academies21
||Seminal definition of children's palliative care—introduced concepts since built upon
|Cortezzo et al22
||Used the WHO definition, built upon the definition by Catlin and Carter16
||Reid et al23 (Australian College of Neonatal Nurses)
||Cited Catlin and Carter16 but emphasized the concept of the role of the neonatal nurse
|Gilmour et al24
||Coined own definition, adding multidisciplinary specialty; continuing into bereavement; and NPC being developmentally appropriate
||Together for Short Lives20
||Concerned with children's palliative care, often used to define NPC also given the universal concepts
|Kenner et al25
||Used Catlin and Carter,16 added concepts about the provision of family-centered palliative care
||World Health Organization12
||Concerned with children's palliative care, has many overarching principles for neonatal palliative care (NPC is not defined specifically by the WHO)
|Kilcullen and Ireland26
||Coined own definition, adding planning with the family about the practicalities of the death
||Used a “generic” definition of palliative care, but described PC as “active,” not “passive”
|Lee et al14
||Added to definition describing palliative care for neonates as unique and specific, requiring special skills, organization, and resources different from those for adults
|Limbo and Wool28
||Used a definition for perinatal PC; highlighted concepts of resources and appropriate language
||Published at the same time as Catlin and Carter,16 did not define NPC per se, but corroborated similar concepts (see Table 2)
||Cites Kain and Wilkinson3 (which cited MacDonald29 and Catlin and Carter16). Mendel30 adds several concepts (see Table 2)
|Williams-Reade et al31
||Cites Catlin and Carter,16 adding concepts of the need to address institutional challenges
Abbreviations: NPC, neonatal palliative care; PC, palliative care; TSL, Together for Short Lives, WHO, World Health Organization.
TABLE 2. -
Themes of Palliative Care Definitions Identified in the Literature
|Philosophies of care
||PC is “active,” not “passive”
||Lamberg27; MacDonald29; Together for Short Lives20; World Health Organization12
||Concurrent delivery of PC with curative care
||Catlin and Carter16; Mendel30
||Using correct and sensitive language
||Catlin and Carter16; Cortezzo et al22; Limbo and Wool28; Reid et al23
||Ethics and humane care
||Facilitating a “good death”
||Institute of Medicine of the National Academies21
||The important of PC as holistic care
||American Academy of Pediatrics17; Catlin and Carter16; Limbo and Wool28
||PC requires planning—it is not accidental
||British Association of Perinatal Medicine19; Catlin and Carter16; Kilcullen and Ireland26
||Quality of life as a pertinent concept
||Ahern15; American Academy of Pediatrics17; Catlin and Carter16; Kenner et al25; Together for Short Lives20
||Bereavement care—ongoing (importance of)
||Bennett et al18; Gilmour et al24; Mendel30; Together for Short Lives20
||Compassion for the neonatal and family, empathy and dignity
||Catlin and Carter16; MacDonald29; Reid et al23
||American Academy of Pediatrics17; Reid et al23
||Decision-making and families—ensuring parents are decision-makers
||Institute of Medicine of the National Academies21; MacDonald29; World Health Organization12
||Support for families (during and after the death)
||Ahern15; American Academy of Pediatrics17; Catlin and Carter16; Cortezzo et al22; Gilmour et al24; Institute of Medicine of the National Academies21; Kenner et al25; Kilcullen and Ireland26; Mendel30; Reid et al23; Together for Short Lives20; World Health Organization12
||Support for caregivers—during and after the death
||Institute of Medicine of the National Academies21; MacDonald29; Mendel30
|Culture and spirituality
||Cultural needs of the family
||American Academy of Pediatrics17; Catlin and Carter16; Reid et al23
||Spiritual needs of the family
||Catlin and Carter16; Gilmour et al24; Kenner et al25; Mendel30; Together for Short Lives20; Williams-Reade et al31; World Health Organization12
||Medicalization of the model—what about other roles? Nurses?
||Gilmour et al24; Reid et al23; Williams-Reade et al31
||The multidisciplinary team—PC is for teams
||Catlin and Carter16; Gilmour et al24; Reid et al23; World Health Organization12
||Alleviating pain and suffering as concepts
||Ahern15; American Academy of Pediatrics17; Catlin and Carter16; Cortezzo et al22; Institute of Medicine of the National Academies21; Kenner et al25; Kilcullen and Ireland26; MacDonald29; Mendel30; Reid et al23
||Managing distressing symptoms for families and for the infant
||Institute of Medicine of the National Academies21; MacDonald29; Mendel30; Together for Short Lives20; World Health Organization12
||Integrated care—connected strategic approach to PC
||Catlin and Carter16; MacDonald29; Mendel30; World Health Organization12
||Skills and expertise—as important as curative care
||Gilmour et al24; Lee et al14
||Resources—PC is resource intensive
||Lee et al14; Limbo and Wool28; World Health Organization12
Abbreviation: PC, palliative care.
Data were analyzed inductively32 and managed using a computerized qualitative data analysis program QSR NVivo 11. The analysis process began with open coding (line-by-line systematic coding based on content) to develop free codes. Free codes were then organized into subthemes, and then integrated into major themes (see Table 2).
The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management. Under each of these major themes, the themes were subcategorized into subthemes.
Philosophies of Care
“Active” Versus “Passive”
There has been a common misconception that palliative care is “passive” and curative care is “active.” Palliative care has previously been interpreted as defeat, taking a step back from perceived inappropriate care and leaving the care of the person to fate. In the extant definitions of NPC, however, palliative care as “active” is a prevalent theme synonymous with “active care,”27,29 and the active and total care of the child's body.12 That palliative care means taking “action” is a notion wholly supported in the literature.20,29,33 The concept that palliative care is active care is an essential element that needs to be integrated into a conceptual definition of NPC.
The Concurrent Delivery of Curative Care and Palliative Care
Not only should the shift from curative to supportive palliative care be seamless, there is a growing body of evidence to support palliative care being offered concurrently with curative care at the end of life.10–12,34 Failure to initiate palliative care early results in a missed opportunity that may contribute to unnecessary suffering for the neonates, their parents, and family and result in distress for caregivers.35 Furthermore, a number of studies have demonstrated the uncertainty that exists surrounding healthcare professionals' ability to precisely identify the point at which the transition away from curative treatments to a sole palliative care model is indicated.36–38 In order to best support and prepare parents for the potential death of their infant, palliative care planning must be incorporated at the point of diagnosis, and often when curative treatments are appropriate, so that transparent and consistent information can be provided as the infant's condition changes. There should not be any hard and fast rules of what does, or does not, constitute “palliative care.” The calibrating principle must be to relieve suffering: if denying sucking feeds when the infant can still coordinate sucking and swallowing contributes to suffering, then this is not “good” palliative care; if denying low-flow oxygen leads to profound hypoxia and other symptoms that distress the family, then this is not “good” palliative care. In a conceptual definition of NPC, that a palliative approach can be combined with cure-oriented, disease-modifying care and then predominate when that cure-oriented care is no longer helpful or appropriate16 is essential terminology.
The language that is used in defining and discussing NPC particularly when considering a conceptual definition is paramount. Overtime using words such as “futile” have been replaced with terms such as “incompatible with life,” “life-limiting conditions,” “terminal conditions,” and terminology that has become popularized in the perinatal palliative care literature such as “life-limiting fetal conditions”20,28,39: these terms are preferable to terms such as “incompatible with life.” Catlin and Carter16 introduced a sensitive approach to language in 2002 when they spoke about the infant who is simply “not going to get better.” Other terms to exemplify the concept of “not getting better” and “dying from one's condition” might also include having “no meaningful chance of survival.”22 The literature also discusses curative care in a more sensitive way by describing newborn infants who will “not benefit from a course of intensive care.”23
Ethics and Humane Care
Given that perinatal and NPC can potentially be an area of ethical debate, it is surprising that the term “ethics” rarely arises in the literature when defining or describing NPC. That care needs to be “humane”29 does rate a mention, but overall, this current review identified only one source that spoke about ethical standards,34 in that palliative care needs to be reasonably consistent with clinical, cultural, and “ethical standards.” This may warrant further investigation because it is clear from the literature that conflict in decision-making about palliative care has ethical quandary as one of the most common causes of conflict between parents and the healthcare team and among members of the healthcare team themselves.40
Facilitating a “Good Death”
A good death is defined in the NPC literature as one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients' and families' wishes; and reasonably consistent with clinical, cultural, and ethical standards.21,41 The palliative care literature for children and adults talks about facilitating a “good death” but the language of a good death is not as prevalent in the perinatal and NPC literature. We know that infants can certainly live well, and it is also highly possible for them to die well. Facilitating a good death seems to be at odds with neonatal care and further adds to the emotive language of infants being “born dying.”42
As a philosophy of care, palliative care for the neonatal population needs to be all encompassing and holistic in nature. This is clearly an important component of developing a conceptual definition of palliative care for this patient population. There are a few sources that emphasize the importance of holistic care.16,17,28 In this context we might think of holistic palliative care as the recognition that the needs of the dying infant go beyond just clinical care and management of symptoms: it needs to extend to meet the emotional and spiritual dimensions of the illness and care for the parents and family. This requires tremendous skill from the healthcare team to meet complex holistic care needs.
Good palliative care does not happen by accident. It takes thoughtful and careful planning in full cooperation with the infant's parents and family. Like any other type of care it is an intervention that needs to be planned.16 The literature guides us to realize the importance of planning with full involvement from parents about their infant while still alive and also considering the most appropriate place for where the care should take place, whether it be in the home or in the hospital environment.19 This careful planning about the practicalities of the death needs to incorporate continuing family support after the infant dies. This suggests that palliative care requires meticulous planning in collaboration with parents, families, and the healthcare team.
Quality of Life
Clearly quality of life plays an important role in any palliative care model across the life span continuum.17,34 The palliative care literature in the neonatal space is replete with the notion of maintaining that quality of life is the essence of good NPC. Quality of life is about the whole family and needs to incorporate emotional, spiritual, social, and physical elements of care.15,20,25 Quality of life concerns itself with alleviating suffering, therefore is an important component when considering the conceptual definition of NPC and improving the condition of the infant's living, and dying.16
Bereavement around the time of death and after the death is a complicated component of palliative care, and every family is different in terms of their bereavement needs and there is no “one size fits all” care plan to manage bereavement. That said, bereavement care is an important element of defining palliative care and considering how best to support the bereavement needs of families through the death and afterward.18,20,24,30
Compassion, Empathy, and Dignity
Compassionate care delivered with empathy while maintaining the dignity of the infant, the parents, and the family are not just words.16,43 All aspects of NPC should be planned interventions by trained interdisciplinary staff members who support with dignity that care must at all times be humane and compassionate.29 These elements of care are discussed throughout the palliative care literature encouraging staff to always support the family's experience with empathy. Parents and families may at times make conclusions about the direction of care for their infant that is at odds with members of the healthcare teams' own values and beliefs.23 This is where the ability to remain emphatic becomes central.
Family-centered care is one of the most accepted and embraced models of care in contemporary neonatal nursing. Having the family at the epicenter of everything the healthcare team does is highly acceptable but never more so than when caring for the palliative neonate. There were just 2 definitions of NPC that highlighted a family-centered approach.17,23
Decision-Making and Families
Involving parents and families in decision-making on behalf of their infant is one of the most contemporary priority areas for NPC. This does not mean leaving families to make unsupported decisions but involves empowering them, giving them correct, realistic, and accurate information while establishing trust. Decision-making needs to include the whole family and is made in general accord with their wishes.12,21 Decision-making needs to be compassionate29 with parents feeling supported in the decisions that they make in that whatever they choose to do for their child will be supported with guidance provided by the healthcare team to ensure decisions are in the best interests of the infant at all times.
Support for Families
Providing support for parents and families is not surprisingly a cornerstone of NPC. The literature defines palliative care as supporting family, infant, and friends and the importance of meeting family needs such as ensuring they take short breaks, engage in self-care, and that the care given to the infant is free from avoidable distress and suffering. Support needs to be both emotional and practical with emphasis on improving the quality of life for the neonate.12,15–17,20–26,30,43
Support for Caregivers
It is important to support both the family and the healthcare professional's emotional needs. That avoidable distress and suffering for the infant is addressed assists in meeting the emotional and practical support for both parents and healthcare professionals.21,29,30
Culture and Spirituality
Being culturally competent in an increasingly multicultural workplace is a given in contemporary neonatal practice. It is hardly surprising then that NPC definitions promote the need to be culturally aware and provide cultural care. Cultural support is described as being culturally sensitive16,17,23 and working within an ethical framework.34
Meeting the spiritual needs of the infant and the family is frequently mentioned in definitions of NPC and is clearly an important aspect of the overall approach. Good palliative care involves spiritual care encompassing all aspects of the needs of the patient and family.12,16,20,24,25,30,31 Addressing religious needs was not found in any definition of neonatal palliative care. This is most likely because religion and spiritual needs are considered together.
Medicalization of the Model
There is a tendency in the literature to overly medicalize NPC. For example, “the nurse” is only mentioned in one reference that defines palliative care and which describes the nursing role.23 Given that it is predominantly the neonatal nurse/midwife that will be delivering care to the neonate who is dying, this is a point of concern. Two definitions of palliative care emphasize “medical care,” effectively rendering the team approach invisible,24,31 but expert palliative care takes a village of staff.
The Multidisciplinary Team
Palliative care delivery requires a community of healthcare providers and a true multidisciplinary approach.12,16,23,24 “Teamwork” and a “team approach” are important from a number of perspectives in order to achieve consistently sensitive and empathetic care; the goal of the interdisciplinary approach is to approach the infant with dignity and support the families experience with empathy and sensitivity.16 It is therefore, imperative that a definition of neonatal palliative must be family centered23 and provided by a multidisciplinary team.43
Regardless of the life span definition of palliative care whether adult, child or neonate, alleviation of pain and suffering is the most important principle. For the dying infant alleviation of suffering can be far greater because the management of their symptoms is often more technologically dependent.14 Palliative care for this patient population is profoundly intended to relieve pain and has a focus on expert pain management and symptom management.15–17,21–23,25,26,30,29,34,43 Reducing mental suffering and avoidable distress for patients' families and caregivers is also an important variable within a definition of NPC.
Managing “Distressing Symptoms”
The symptoms that the neonate manifests as death approaches can be extraordinarily distressing and require careful and skilled management. Managing distressing symptoms, such as management of secretions, seizures, and breathing difficulties, are perhaps the most cited variables in the definitions provided in the current literature.12,20,21,29,30 The majority of definitions of NPC include the importance of ensuring that avoidable distress and suffering for patients families and caregivers is sensitively and skillfully managed. In espousing, a conceptual definition of NPC management of distressing symptoms is paramount.
NPC requires a strategic connected approach between multiple disciplines but also across the continuum of care, as it needs to take into account the encompassment of physical, emotional, social, and spiritual needs of both the infant and the family.30 There are frequently multiple issues at play that may be physical, psychological, and social and all of these concerns require alleviation requiring an integrated approach to care.12 The entire healthcare team has to be mindful of providing careful handling to the infant while advocating for avoiding invasive and potentially painful procedures and monitoring that may be obtrusive and unnecessary.12 This must all be balanced with relieving the suffering of the dying infant.16
Skills and Expertise
Previous research has found that delivering palliative care is often left to the least experienced staff, particularly when palliative care is delivered over a prolonged period. This is unfortunate and a conceptual NPC definition must emphasize that supporting infants and families through palliative care and into bereavement requires a specific and unique set of skills from the entire team.24 Caring for neonates who will die from their condition and providing support to families requires significant expert care in symptom management, and exemplary communication skills particularly around very sensitive issues from the entire team.
NPC can be resource intensive and often requires resources which are quite different from those required by adults,14 not only because of physical resources but also staffing resources. It is important to remember, however, that NPC can be implemented even when physical resources are limited.12 The location of care is also a consideration. For longer term infants palliative care can be considered in the home43; this model of palliative care however requires extensive support for families who wish to take this option. Palliative care can also be implemented in long-term hospital facilities, hospice settings, and community health centeres,12 one of the most important variables being that the environment is comfortable.16,29 It is also important to mention that the mindset of staff is more important than the physical location of care.16 An organization might have a purpose-built space and an aesthetically pleasing environment, but it is the investment from the staff and the empowerment of parents and families that are pivotal to NPC.
IMPLICATIONS FOR RESEARCH
The extensive elements, presented thus far that are considered essential to a comprehensive and conceptual definition of neonatal palliative, warrant a comprehensive and detailed recommendation.
NPC is an active and holistic approach that is an integral component of the neonatal care delivery model. This active form of care begins before, at, or after birth once a life-limiting, terminal, or uncertain condition has been determined. It involves a purposeful and planned treatment approach that involves the multidisciplinary team and shared decision-making with the family. As the infant's course unfolds, the benefits of curative treatments are carefully considered and weighed with the benefits of a shift toward palliative treatments. The parent's preferences are paramount in the decision-making process and are the overriding factor in determining the appropriateness of treatments, whether they are curative or palliative in nature.
At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a “good death.” Core components of a palliative care model include support for the family that addresses their spiritual, cultural, and psychosocial needs. Care for the infant includes the alleviation of suffering, through appropriate pain assessment and medication managed treatment, and the management of distressing symptoms during the dying process.
Palliative care encompasses support for the family during and after the death of their infant. Memory-making activities that will later assist in the grieving process are an essential component of NPC. Follow-up care that includes support group and bereavement group referrals is essential to the grieving process and long-term emotional and physical health of the family.
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