Perinatal palliative care in sub-Saharan Africa: recommendations for practice, future research, and guideline development
Palliative Care; neonatal intensive care; perinatal palliative care; neonatal end-of-life care; Africa South of the Sahara; low-middle-income-countries; newborn bereavement; sub-saharan Africa
Worldwide, sub-Saharan Africa has the highest burden of global neonatal mortality (43%) and neonatal mortality rate (NMR): 27 deaths per 1,000 live births. The WHO recognizes palliative care (PC) as an integral, yet underutilized, component of perinatal care for pregnancies at risk of stillbirth or early neonatal death, and for neonates with severe prematurity, birth trauma or congenital anomalies. Despite bearing a disproportionate burden of neonatal mortality, many strategies to care for dying newborns and support their families employed in high-income countries (HICs) are not available in low-and-middle-income countries (LMICs). Many institutions and professional societies in LMICs lack guidelines or recommendations to standardize care, and existing guidelines may have limited adherence due to lack of space, equipment, supplies, trained professionals, and high patient load. In this narrative review, we compare perinatal/neonatal PC in HICs and LMICs in sub-Saharan Africa to identify key areas for future, research-informed, interventions that might be tailored to the local sociocultural contexts and propose actionable recommendations for these resource-deprived environments that may support clinical care and inform future professional guideline development.
Abayneh M; Rent S; Ubuane PO; Carter BS; Deribessa SJ; Kassa BB; Tekleab AM; Kukora SK
Frontiers in Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2023.1217209" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1217209</a>
Parental experiences of prenatal education when preparing for labor and birth of infant with a lethal diagnosis
Infant; perinatal palliative care; birth plan; life-limiting fetal condition; perinatal palliative education; prenatal classes
AIM: The aim of this study was to describe the unique experiences of parents facing a Life Limiting Fetal Conditions (LLFC) diagnosis, who chose to continue with their pregnancy, as they prepare for childbirth through individual and group prenatal education. DESIGN: A qualitative study. METHODS: We employed the phenomenological approach and the Colaizzi strategy to analyse semi-structured interviews. Thirteen persons were interviewed. The participants were couples (n = 6) and women (n = 7) who received LLFC and were preparing for birth. RESULTS: We described three main paths of prenatal education chosen by parents with LLFC: 'Searching for normality' concerned people participating in conventional prenatal classes (AC) who tried to avoid confronting the situation they faced; 'Searching for communitas' concerned the participation in special AC selected for the opportunity of sharing experiences; 'Searching for an individual way' concerned people who resorted to individual preparation for childbirth, often as a result of delayed planning. Parents should have a choice of various paths of birth preparation, that best meet their preferences.
Tataj-Puzyna U; Baranowska B; Szlendak B; Szabat M; Węgrzynowska M
Nursing Open
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1002/nop2.1928" target="_blank" rel="noreferrer noopener">10.1002/nop2.1928</a>
Evaluation of learning transfer after a perinatal/neonatal palliative care virtual training course
Palliative Care; training; perinatal palliative care; learning transfer; neonatal comfort care; virtual training
BACKGROUND: The success of a training can be determined by the degree of learning transfer. To address a gap in educational offerings during the pandemic, an interdisciplinary team developed and offered a 3-day virtual course, called Next Level Perinatal Palliative Care Training. OBJECTIVE: This study aimed to evaluate the transfer of learning and practice from a virtual training course on perinatal/neonatal palliative care (PNPC) by a range of clinicians. STUDY DESIGN: A descriptive prospective survey design was used to collect data at two time points, immediately following the training course and 6 months later. Frequency and descriptive statistics were used to measure the implementation of PNPC quality indicators, self-reported competence, and clinical facilitators and barriers. A t-test was used to compare participants' anticipated learning transfer to actual learning transfer. Two open-ended items assessed benefits and drawbacks of virtual training. RESULTS: At course completion, participants anticipated opportunities to implement PNPC strategies with means of 84-87, and at the 6-month mark, the reported implementation had means ranging from 71 to 77. At 6 months post training, participants reported feeling competent/highly competent in each variable with frequency scores of 89%-98%. The opportunity to learn key concepts of PNPC and refresh skill sets ranked as the top facilitators, while the top barriers were the lack of opportunity to use PNPC principles and the lack of funding. CONCLUSION: Learning transfer after a virtual training course of PNPC proved to be successful, with a high rate of self-reported actual implementation and competence at 6 months after the training.
Brady S; Parravicini E; Wool C
Frontiers in Pediatrics
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2023.1215863" target="_blank" rel="noreferrer noopener">10.3389/fped.2023.1215863</a>
Perinatal Palliative Care in the Neonatal Intensive Care Unit
Hospice and Palliative Care Nursing; Infant Newborn Diseases; Child; Female; Humans; Infant; Infant Newborn; Intensive Care Units Neonatal; Memory making; Neonatal palliative care; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Resilience
With the frequency of infant deaths in the United States, many attributed to congenital malformations and prematurity, the neonatal intensive care unit (NICU) nurse must be adept at planning and providing perinatal palliative care. The NICU nurse requires education and training to proficiently contribute to the care planning and delivery of care and facilitate memory-making activities. The provision of perinatal palliative care may precipitate moral distress and needs to be addressed with education and resilience-fostering activities. To further perinatal palliative care effectiveness, research needs to be conducted.
Maher-Griffiths C
Critical Care Nursing Clinics of North America
2022
<a href="http://doi.org/10.1016/j.cnc.2021.11.008" target="_blank" rel="noreferrer noopener">10.1016/j.cnc.2021.11.008</a>
Perinatal palliative care
Bereavement; Child; Infant; Life-limiting condition; Life-threatening condition; Neonatal death; Newborn; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Quality of Life
Perinatal Palliative Care is a model of care designed to prevent and treat the physical, spiritual, emotional, and social needs of fetuses and newborn infants with life-threatening or life-limiting conditions. The care extends to the infant's family. It is delivered by an interdisciplinary team to improve the quality of life from the time of diagnosis (possibly in utero) into death and bereavement (days, months or years later). To guarantee the access of this vulnerable population to high quality palliative care, structured programs and protocols need to be further developed in tertiary hospitals that treat highly complex obstetric and neonatal pathologies. Basic training is required for all the professionals involved.
Martín-Ancel A; Pérez-Muñuzuri A; González-Pacheco N; Boix H; Espinosa Fernández MG; Sánchez-Redondo MD; Cernada M; Couce ML
Anales de Pediatría (English Edition)
2022
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.anpede.2021.10.003" target="_blank" rel="noreferrer noopener">10.1016/j.anpede.2021.10.003</a>
Implementation of Quality Indicators of Perinatal/Neonatal Palliative Care One-Year Following Formal Training
neonatal palliative care; perinatal palliative care; medical education; quality indicators; learning transfer
Objective: The aim of this study was to measure implementation of quality indicators (QIs) of Perinatal/Neonatal Palliative Care (PNPC) as reported by participants following a one-year training course. Study Design: A cross-sectional survey mixed-method design was used to obtain data from an interdisciplinary team of professionals one year after attending a PNPC training course. A questionnaire with 32 QIs queried participants about self-reported implementation of PNPC and that of their colleagues. Descriptive and frequency data were analyzed to measure the implementation of PNPC QIs. Qualitative data were examined using content analysis. Results: Response rate was 34 of 76 (44.7%). Half of the QIs are implemented in clinical settings by course attendees more than 90% of the time, and 15 QIs are implemented between 70 and 89.9%. Colleagues within the same healthcare system applied palliative care practices less frequently than those who attended the training course. When asked if quality indicators were "always" implemented by colleagues, the average difference in scores was 36% lower. Qualitative analyses resulted in three themes that addressed changes in clinical practice, and four themes that summarized barriers in practice. Conclusion: There is high frequency of implementation of QIs by professionals who attended an evidence based PNPC training course. PNPC is implemented by the colleagues of attendees, but with less frequency. Attending evidence-based education increases clinicians' opportunities to translate quality PNPC care into clinical settings.
Wool C; Parravicini E
Frontiers in Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2021.752971" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.752971</a>
A Scoping Review of Perinatal Palliative Care: Allowing Parents to Be Parents
congenital; fetal anomaly; life-limiting condition; perinatal hospice; perinatal palliative care; prenatal diagnosis
OBJECTIVE: -Perinatal palliative care (PPC) is an option for patients who discover that their infant has a life-limiting fetal condition, which decreases the burden of the condition using a multidisciplinary approach. STUDY DESIGN: -This review discusses the landmark literature in the past two decades, which have seen significant growth and development in the concept of PPC. RESULTS: -The literature describes the background, quality, and benefits of offering PPC, as well as the ethical principles that support its being offered in every discussion of fetal life-limiting diagnoses. CONCLUSIONS: -PPC shares a similar risk profile to other options after life-limiting diagnosis, including satisfaction with choice of continuation of pregnancy. The present clinical opinion closes by noting common barriers to establishing PPC programs and offers a response to overcome each one. KEY POINTS: · Perinatal palliative care serves patients who continue pregnancies with life-limiting fetal anomaly.. · Perinatal palliative care has a risk profile similar to other options such as termination.. · Health care providers can serve as champions to extend PPC to patients in their region..
Buskmiller C; Calhoun BC
American Journal of Perinatology
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1055/s-0041-1740251" target="_blank" rel="noreferrer noopener">10.1055/s-0041-1740251</a>
Perinatal Palliative Care Service: Developing a Comprehensive Care Package for Vulnerable Babies with Life Limiting Fetal Conditions
palliative care; perinatal palliative care; comfort care; end of life care; life limiting fetal conditions; vulnerable babies
Background: Perinatal Palliative Care provides comprehensive and holistic care for expectant and new parents, who receive a diagnosis of life-limiting fetal condition and opt to continue pregnancy and care for their newborn infant. Aim: To develop a service providing individually tailored holistic care during pregnancy, birth, postnatal and bereavement period. Methods: Following a baseline survey of neonatologists and discussions with key stakeholders we launched the Perinatal Palliative service at the KK Women's and Children's hospital, Singapore in January 2017. The multidisciplinary team, led by a Palliative care specialist comprised of Obstetricians, Neonatologists, nurses and medical social workers. The Birth defect clinic referred parents with antenatally diagnosed 'Lethal' fetal conditions. The team checked the understanding and the decision making process of parents and initiated and finalized advance care plans. The service also embraced deserving postnatal referrals upon request. Results: A total of 41 cases were seen from January 2017 to December 2019. Of these, 26/41(63%) were referred antenatally and had completed advance care plans. 18/41 (44%) died during or shortly after birth and 10/41(24%) continue to survive and are supported by the community palliative team. During this time a workflow was formulated and modified based on parent and team feedback. Conclusion: Awareness of the service has increased over the years and a clear workflow has been formulated. Advance care plans are prepared and documented before birth so as to enable service teams on board to provide well timed pertinent care. Feedbacks from parents about this service were positive.
Tewani KG; Jayagobi PA; Chandran S; Anand AJ; Thia EWH; Bhatia A; Bujal R; Khoo PC; Quek BH; Tagore S; Chua MC
Journal of Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/08258597211046735" target="_blank" rel="noreferrer noopener">10.1177/08258597211046735</a>
The Role of Perinatal Palliative Care in Fetal Neurology
fetal; fetal neurology; neonatal; neurology; Palliative Care; perinatal palliative care
Many serious or life-threatening neurologic conditions are first diagnosed during the fetal period, often following a routine prenatal ultrasound or sonographic evaluation after an abnormal aneuploidy screen. Such conditions represent a worrisome or unexpected finding for expectant parents, making the perinatal period a critical time point to engage and empower families encountering complex clinical neurologic clinical scenarios. The prenatal identification of structural abnormalities of the brain or spinal cord, radiographic signs of hemorrhage or ischemic injury, or evidence of genetic or metabolic conditions should all prompt involvement of a fetal palliative care team to work alongside obstetric and neonatal providers. The inherent prognostic uncertainty is challenging for prenatally diagnosed neurologic conditions, which have a wide range of severity and difficult to predict short and long-term outcomes. While many of these conditions will lead to the birth of an infant with neurodevelopmental challenges, few will result in in utero demise. Palliative care beginning in the perinatal period provides an additional layer of support for families navigating complex decision making during their pregnancy and provides continuity of care into the newborn period. Palliative care principles can help guide discussions around genetic and other diagnostic testing, fetal surgery, and birth planning. A multidisciplinary team can help guide and support families through pre- and postnatal decision making and through bereavement care in the setting of fetal or neonatal death. Early involvement of a tailored palliative care team can provide a more holistic approach to the counseling process, facilitate planning and conversations, and ensure that the family's goals and wishes are acknowledged throughout the infant's care trajectory.
Rent SM; Lemmon ME; Ellestad S; Bidegain M
American Journal of Perinatology
2021
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<a href="http://doi.org/10.1055/a-1682-2798" target="_blank" rel="noreferrer noopener">10.1055/a-1682-2798</a>
The role of perinatal palliative care following prenatal diagnosis of major, incurable fetal anomalies: a multicentre prospective cohort study
advance care planning; fetal anomaly; incurable anomaly; life-limiting fetal diagnosis; perinatal palliative care
OBJECTIVE: To describe prenatal decision-making processes and birth plans in pregnancies amenable to planning perinatal palliative care. DESIGN: Multicentre prospective observational study. SETTING: Nine Multidisciplinary Centres for Prenatal Diagnosis of the Paris-Ile-de-France region. POPULATION: All cases of major and incurable fetal anomaly where limitation of life-sustaining treatments for the neonate was discussed in the prenatal period between 2015 and 2016. METHODS: Cases of congenital defects amenable to perinatal palliative care were prospectively included in each centre. Prenatal diagnosis, decision-making process, type of birth plan, birth characteristics, pregnancy and neonatal outcome were collected prospectively and anonymously. MAIN OUTCOME MEASURE: Final decision reached following discussions in the antenatal period. RESULTS: We identified 736 continuing pregnancies with a diagnosis of a severe fetal condition eligible for TOP. Perinatal palliative care was considered in 102/736 (13.9%) pregnancies (106 infants); discussions were multidisciplinary in 99/106 (93.4%) cases. Prenatal birth plans involved life-sustaining treatment limitation and comfort care in 73/736 (9.9%) of the pregnancies. The main reason for planning palliative care at birth was short-term inevitable death in 39 cases (53.4%). 76/106 (71.7%) infants were born alive. 18/106 (17%) infants were alive at last follow-up, including 4 with a perinatal palliative care birth plan. CONCLUSIONS: Only a small proportion of severe and incurable fetal disorders were potentially amenable to limitation of life-sustaining interventions. Perinatal palliative care may not be considered as an universal alternative to termination of pregnancy.
de Barbeyrac C; Roth P; Noël C; Anselem O; Gaudin A; Roumegoux C; Azcona B; Castel C; Noret M; Letamendia E; Stirnemann J; Ville Y; Lapillonne A; Viallard ML; Kermorvant-Duchemin E
Bjog
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/1471-0528.16976" target="_blank" rel="noreferrer noopener">10.1111/1471-0528.16976</a>
Creating a safe space': how perinatal palliative care coordinators navigate care and support for families
Care coordinator; Case Management; Curriculum; Delivery of Health Care; Family; Fetal diagnosis; Grief; Newborn Infant; Palliative Care; Perinatal Care; Perinatal palliative care; Pregnancy; Qualitative Research
BACKGROUND: Families who learn that their unborn baby has a life-limiting fetal condition are often overwhelmed by this news, alongside navigating an unfamiliar healthcare system. A skilled perinatal palliative care coordinator (PPCC) can help these families, yet little is known about their function and roles. AIMS: This study sought to describe the PPCC's approach to care, their guiding principles and the roles, knowledge and skills that enable them to provide exemplary care. METHODS: This qualitative descriptive study included interviews of 12 expert PPCCs. Directed content analysis was used to identify major codes. Iterative analysis led to theme identification. FINDINGS: Findings include the PPCC's position within the healthcare system, guiding principles, goals, roles and responsibilities, and knowledge and skills. Two figures enhance the understanding of the PPCCs approach to creating a safe space for the family, supporting the interdisciplinary team and facilitating coordinated birth planning. CONCLUSIONS: Every perinatal palliative care programme should include a PPCC. Future research on clinical training could examine the effectiveness of an educational intervention, using the detailed knowledge and skills learned in this study as a curriculum.
Côté-Arsenault D; Denney-Koelsch E; Elliott G
International Journal of Palliative Nursing
2021
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<a href="http://doi.org/10.12968/ijpn.2021.27.8.386" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2021.27.8.386</a>
Medications to manage infant pain, distress and end-of-life symptoms in the immediate postpartum period
palliative care; symptom management; life-limiting condition; perinatal palliative care; Comfort care; medications
INTRODUCTION: Perinatal palliative care (PnPC) is a growing field where healthcare providers from multiple disciplines are supporting families and providing holistic care for their babies with life-limiting illnesses. It is important to have an approach that includes the standardized management of end-of-life symptoms that are anticipated around the time of birth. AREAS COVERED: A need was identified to develop medication orders for the initial pharmacological management of symptoms at end-of-life for infants with life-limiting conditions intended for use outside of an intensive care setting. The choice of medications was based on a review of the literature, discussion with content experts and guided by their ease of use, accessibility and noninvasive route of delivery. The recommendations can be used as a guide for the initial management of common symptoms encountered in perinatal palliative care. EXPERT OPINION: There are studies looking at many qualitative aspects of perinatal palliative care including perceptions of care, decision-making, and bereavement; however, few specifically focus on symptom management in the delivery room and postpartum ward settings. There is a need for standardization of the medical management of infants born with life-limiting conditions whose parents choose to pursue palliative care.
Veldhuijzen van Zanten S; Ferretti E; MacLean G; Daboval T; Lauzon L; Reuvers E; Vadeboncoeur C
Expert Opinion on Pharmacotherapy
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/14656566.2021.1965574" target="_blank" rel="noreferrer noopener">10.1080/14656566.2021.1965574</a>
Perinatal palliative care: a dedicated care pathway
Child; Hospice and Palliative Care Nursing; Hospice Care; Infant; life-limiting diseases; life-threatening diseases; neonatal mortality; neonatal pain management; Newborn Infant; paediatric palliative care; Palliative Care; Parents; perinatal palliative care; Pregnancy; Terminal Care
OBJECTIVE: Ensure access to perinatal palliative care (PnPC) to all eligible fetuses/infants/parents. DESIGN: During 12 meetings in 2016, a multidisciplinary work-group (WG) performed literature review (Grading of Recommendations, Assessment, Development and Evaluation (GRADE) method was applied), including the ethical and legal references, in order to propose shared care pathway. SETTING: Maternal-Infant Department of Padua's University Hospital. PATIENTS: PnPC eligible population has been divided into three main groups: extremely preterm newborns (first group), newborns with prenatal/postnatal diagnosis of life-limiting and/or life-threatening disease and poor prognosis (second group) and newborns for whom a shift to PnPC is appropriate after the initial intensive care (third group). INTERVENTIONS: The multidisciplinary WG has shared care pathway for these three groups and defined roles and responsibilities. MAIN OUTCOME MEASURES: Prenatal and postnatal management, symptom's treatment, end-of-life care. RESULTS: The best care setting and the best practice for PnPC have been defined, as well as the indications for family support, corpse management and postmortem counselling, as well suggestion for conflicts' mediation. CONCLUSIONS: PnPC represents an emerging field within the paediatric palliative care and calls for the development of dedicated shared pathways, in order to ensure accessibility and quality of care to this specific population of newborns.
Rusalen F; Cavicchiolo ME; Lago P; Salvadori S; Benini F
BMJ Supportive & Palliative Care
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjspcare-2019-001849" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2019-001849</a>
Perinatal Palliative Care: Cultural, Spiritual, and Religious Considerations for Parents-What Clinicians Need to Know
cultural needs; parents; perinatal palliative care; religious needs; spiritual needs
For perinatal palliative care (PPC) to be truly holistic, it is imperative that clinicians are conversant in the cultural, spiritual and religious needs of parents. That cultural, spiritual and religious needs for parents should be sensitively attended to are widely touted in the PPC literature and extant protocols, however there is little guidance available to the clinician as to how to meet these needs. The objective of this review article is to report what is known about the cultural, spiritual and religious practices of parents and how this might impact neonates who are born with a life-limiting fetal diagnosis (LLFD). The following religions will be considered-Islam, Buddhism, Hinduism, Judaism, and Christianity-in terms of what may be helpful for clinicians to consider regarding rituals and doctrine related to PPC. Data Sources include PubMed, Ovid, PsycInfo, CINAHL, and Medline from Jan 2000-June 2020 using the terms "perinatal palliative care," "perinatal hospice," "cultur(*)," and "religiou(*)." Inclusion criteria includes all empirical and research studies published in English that focus on the cultural and religious needs of parents who opted to continue a pregnancy in which the fetus had a life-limiting condition or had received perinatal palliative care. Gray literature from religious leaders about the Great Religions were also considered. Results from these sources contributing to the knowledge base of cultural, spiritual and religious dimensions of perinatal palliative care are considered in this paper.
Kain VJ
Frontiers in Pediatrics
2021
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2021.597519" target="_blank" rel="noreferrer noopener">10.3389/fped.2021.597519</a>
Summary of the Key Concepts on How to Develop a Perinatal Palliative Care Program
life-threatening condition; life-limiting condition; program; perinatal palliative care; interest.; limit of viability
Purpose of review: The aim of this study is to assess the most significant Perinatal Palliative Care (PnPC) development projects in the literature and summarize the shared key principles. Recent findings: PnPC is a new concept in neonatal intensive care approach. Advancements in perinatal diagnostics and medical technology have changed the landscape of the perinatal world. The threshold of viability continues to decrease, and diagnostic information is available earlier in pregnancy and more rapidly at the bedside; overall outcomes continue to improve. This rapid technological improvement brings ethical debates on the quality of life of patients with life-limiting and life-threatening conditions and the need to involve the family in the decision-making process, according to their wishes and cultural beliefs. Although the Perinatal Hospice concept was developed in the 1980s in the US, the first recommendations on how to develop a PnPC pathway were published in the early 2000s. We considered the most relevant position statements or guidelines on PnPC published in the last two decades. Some of them were more pertinent to pediatrics but still useful for the fundamental concepts and PnPC project's development. Summary: Health care providers and institutions are encouraged to develop PnPC programs, which have the goal of maximizing the quality of life of infants with non-curable conditions. These may generally include the following: a formal prenatal consultation; development of a coordinated birth plan between obstetrician, newborn care, and family; access to other neonatal and pediatric specialties, as needed; comfort palliative care during the prenatal, birth, and postnatal periods; and psychosocial and spiritual support for families, siblings, and staff.
Lago P; Cavicchiolo ME; Rusalen F; Benini F
Frontiers in Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2020.596744" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.596744</a>
Perinatal Palliative Care Birth Planning as Advance Care Planning
advance care planning; birth plan; life-limiting diagnosis; neonatal; perinatal palliative care
Purpose of Review: A significant number of pregnancies are complicated by a fetus with a life-limiting diagnosis. As diagnoses are made earlier in the pregnancy, families experience anticipatory grief and are faced with navigating goals of care for a baby that has yet to be born. With the support of the care team, families can begin to grieve, plan, and make meaningful memories during the duration of the pregnancy, the birth of their baby, and life of the child. Creating a palliative care birth plan, which expands beyond the traditional concept for delivery planning to include prenatal, perinatal, and neonatal care has become an important method for parents to process the diagnosis, for parents to document their wishes, and for members of the care team to communicate with the goal of supporting and enhancing the experience of the family. This articles reviews recent and relevant literature on the importance of birth planning and the role of perinatal palliative care when a life-limiting fetal diagnosis is made. Recent Findings: The process of birth planning is an important component of perinatal palliative care. Through this process, families can express their fears, values, hopes, and wishes. It also offers an opportunity for providers to communicate these wishes for the remainder of the pregnancy, the delivery, birth, and time afterwards. This has been demonstrated to decrease maternal stress and promote family centered care. Summary: Perinatal birth planning is an important component of perinatal palliative care when a fetus has a life-limiting diagnosis. The process of birth planning can be supportive and therapeutic as well as an important communication tool. With multiple practices and designs of perinatal palliative care programs, there are no standard tools even though important components have been identified. Ultimately, the strategies outlined here can be used as advance care planning tools.
Cortezzo D E; Ellis K; Schlegel A
Frontiers in Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2020.00556" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.00556</a>
Neonatal End-of-Life Symptom Management
end-of-life; neonatal; perinatal palliative care; pharmacological management; symptom management
Purpose of review: Despite advances in technology and treatment options, over 15,000 neonates die each year in the United States. The majority of the deaths, with some estimates as high as 80%, are the result of a planned redirection of care or comfort measures only approach to care. When curative or life-prolonging interventions are not available or have been exhausted, parents focus on preserving quality of life and eliminating needless suffering. Parents hope their child will have a peaceful death and will not feel pain. A significant component of end-of-life care is high quality symptom evaluation and management. It is important that neonatal providers are knowledgeable in symptom management to address common sources of suffering and distress for babies and their families at the end-of-life (EOL). Recent findings: Medically complex neonates with life-threatening conditions are a unique patient population and there is little research on end-of-life symptom assessment and management. While there are tools available to assess symptoms for adolescents and adults, there is not a recognized set of tools for the neonatal population. Nonetheless, it is widely accepted that neonates experience significant symptoms at end-of-life. Most commonly acknowledged manifestations are pain, dyspnea, agitation, and secretions. In the absence of data and established guidelines, there is variability in their clinical management. This contributes to provider discomfort and inadequate symptom control. Summary: End-of-life symptom assessment and management is an important component of neonatal end-of-life care. While there remains a paucity of studies and data, it is prudent that providers adequately manage symptoms. Likewise, it is important that providers are educated so that they can effectively guide families through the dying process by discussing disease progression, physical changes, and providing empathetic support. In this review, the authors make recommendations for non-pharmacological and pharmacological management of end-of-life symptoms in neonates. © Copyright © 2020 Cortezzo and Meyer.
Cortezzo D E; Meyer M
Frontiers in Pediatrics
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2020.574121" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.574121</a>
Close to Home: Perinatal Palliative Care in a Community Hospital
community palliative care; community perinatal hospice; life-limiting perinatal diagnosis; neonatal palliative care; perinatal hospice; perinatal palliative care; prenatal testing
BACKGROUND: Advances in prenatal testing and diagnosis have resulted in more parents learning during pregnancy that their child may die before or shortly after birth. These advances in testing and diagnosis have also resulted in more parents choosing, despite the diagnosis, to continue their pregnancies and pursue a palliative approach to their infant's short life. Perinatal hospice and palliative care is a growing model of care developed in response to these parents' previously unmet needs. A seldom-discussed opportunity to provide this care exists in outlying community hospitals, which are ideally placed to provide care close to home for families who have chosen comfort measures and time with their child. PURPOSE: This article reviews the definition and utility of perinatal palliative care, the population it serves, attempts to support a rational for development of community-based programs, and describes one community hospital's experience with perinatal palliative care in their community. METHODS/SEARCH STRATEGY: This article describes the development and processes of a perinatal palliative care program at a community hospital in Fredericksburg, Virginia. IMPLICATIONS FOR PRACTICE: Perinatal palliative care can be developed with the assistance of already existing training materials, resources, and staff. While the cohort of patients may be small, implementing perinatal palliative care in a community setting may result in wider availability of this care and more accessible options for these families. IMPLICATIONS FOR RESEARCH: Research possibilities include developing a template for creating a perinatal palliative care program at community hospitals that could be replicated elsewhere; assessing parental satisfaction and quality indicators of perinatal palliative care at community hospitals and at referral hospitals; and assessing outcomes in various settings.
Ziegler T R; Kuebelbeck A
Advances in Neonatal Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/anc.0000000000000732" target="_blank" rel="noreferrer noopener">10.1097/anc.0000000000000732</a>
Conceptually Redefining Neonatal Palliative Care
comfort care; neonatal end-of-life care; neonatal palliative care; perinatal palliative care
BACKGROUND: First defined in 2002 by Catlin and Carter, neonatal palliative care (NPC) is a relatively new model of care in neonatal pediatrics, first appearing in the medical literature in the early 1980s. PURPOSE: The purpose of this article is to suggest a conceptual definition of NPC that encompasses all the essential concepts as a way of moving NPC forward by having a consistent approach. METHOD(S): Following a review of the NPC literature, a thematic analysis as a method for identifying, analyzing, and interpreting patterns of meaning in the definitions ("themes") within the literature was undertaken. FINDINGS: The major themes identified included philosophies of care, support, culture and spirituality, the team, and clinical management. IMPLICATIONS FOR RESEARCH: At the heart of NPC is the primacy of maintaining quality of life, while providing ethical and humane care that supports a "good death." The extensive elements presented in this article are considered essential to a comprehensive and conceptual definition of NPC proposed here.
Kain V J; Chin S D
Advances in Neonatal Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/ANC.0000000000000731" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000731</a>
Implementation of a Perinatal Hospice Program
antenatal hospice; life-limiting; neonatal; neonatal intensive care unit; NICU; perinatal hospice; perinatal palliative care
BACKGROUND: In 2017, the Nebraska Unicameral passed legislative bill 506, which required physicians to inform patients carrying fetuses diagnosed with a life-limiting anomaly of the option to enroll in a comprehensive perinatal hospice program. The bill also required the Department of Health & Human Services to provide information about statewide hospice programs. Families enrolled in hospice programs are better prepared for the birth and death of their child. This large academic medical center was listed on the registry but did not have a formal perinatal hospice program. PURPOSE: Implementation of a comprehensive perinatal hospice program. METHOD(S): The program was designed and implemented, beginning with the formation of an interdisciplinary team. Guidelines were developed for program referral, care conferences, team communication, and family follow-up. The team was educated. Electronic record documentation and order set were implemented. A data collection process was developed to track referrals and critical data points. RESULT(S): The perinatal hospice program has been accepting referrals but has not had any qualifying referrals. IMPLICATIONS FOR PRACTICE: The development of an evidence-based guideline for referral that can improve referral consistency. While trisomy 13 and 18 diagnosis was historically considered life-limiting, these families now have the option of full intervention and transfer for specialists. IMPLICATIONS FOR RESEARCH: Future research will include collecting data from patients who could have benefited from hospice, including infants who were born 20 to 22 weeks, or for maternal reasons. Future research will evaluate the experience after bereavement, the hospice team's experience, and the effectiveness of the referral process.
Falke M; Rubarth L B
Advances in Neonatal Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/ANC.0000000000000755" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000755</a>
Perinatal palliative care education: An integrative review
Education; Health care professionals; Integrative review; Perinatal palliative care; Training
OBJECTIVES: The aim of this review was to analyze the effectiveness of teaching healthcare professionals in perinatal palliative care, methods of evaluating the teaching, and the teaching strategies used. DESIGN: An integrative review. METHODS: A systematic search was conducted for English language peer reviewed publications of any research design via SCOPUS, Medline/PubMed, EBSCOhost, Science Direct, ERIC, Web of Science, Wiley, Nursing Ovid, and ProQuest databases. Fourteen research papers published between 2002 and 2017 that met the selection criteria were included in the review. FINDINGS: All 14 studies considered perinatal bereavement education to be effective. Eight studies reported statistical improvements in knowledge, security/comfort in providing end-of-life care, or increased perceptions of the emotional care needs of bereaved families, after attending an educational program. Questionnaires or interviews were used to evaluate the educational programs. Innovative teaching strategies, in particular, were evaluated positively (e.g., simulation, discussion, and arts-based methods). CONCLUSION: Perinatal palliative care education is essential in pregradual education for midwives and neonatal nurses. Other research is vital for finding out the effectiveness of this education for pregraduate nursing students. Perinatal palliative care education programs need to be available in postgraduate education for professionals who encounter perinatal death and bereaved families in hospital and community care.
Ratislavova K; Buzgova R; Vejvodova J
Nurse Education Today
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.nedt.2019.08.003" target="_blank" rel="noreferrer noopener">10.1016/j.nedt.2019.08.003</a>
Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.
fetal anomaly; instrument development; neonatal palliative care; pediatric palliative care; perinatal hospice; perinatal palliative care
Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.
Stenekes S; Penner JL; Harlos M; Proulx M; Shepherd E; Liben S; Thompson G; MacConnell G; Gregoire M; Siden Harold Hal
Journal of palliative care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0825859718790627" target="_blank" rel="noreferrer noopener">10.1177/0825859718790627</a>
Ethical Considerations In Perinatal Palliative Care
Clinical Ethics; Organ Donation; Perinatal Bereavement; Perinatal Palliative Care; Shared Decision Making
Clinicians may face new ethical considerations when parents continue pregnancies after receiving life-limiting fetal diagnoses and desire palliative care. In this article we present four ethical considerations in perinatal palliative care: ambiguous terminology in relation to diagnosis or prognosis, differences between bereavement support and palliative care, neonatal organ donation, and postdeath cooling. In this article, we enable readers to consider current topics from different perspectives and reflect on care when confronted with sensitive clinical scenarios.
Mendes Joana; Wool Jesse; Wool Charlotte
Journal Of Obstetric, Gynecologic, And Neonatal Nursing: Jognn
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
10.1016/j.jogn.2017.01.011
Quality Predictors Of Parental Satisfaction After Birth Of Infants With Life-limiting Conditions
Foetal Diagnosis; Life-limiting Condition; Parental Satisfaction; Perinatal Palliative Care
AIM: This study examines parental satisfaction with care received in the context of a life-limiting fetal diagnosis and subsequent birth. METHODS: Survey methods were utilized to embed the Quality Indicators (QI) and Parental Satisfaction of Perinatal Palliative Care Instrument in a survey: "The Voice of Parents". RESULTS: The web-based survey had a final sample of N=405 parent responders. Overall, parents reported satisfaction with care (80.2%; n=393). Parents satisfied with care reported higher agreement with quality indicator items for all subscales. In total, 17 items from the 41-item instrument revealed the ability to predict higher parental satisfaction when particular QI are reported. CONCLUSION: This study has led to credible insights into parental satisfaction with care given after the birth of an infant with a life-limiting condition. The findings contribute to development of a model with a good fit in ascertaining the importance of compassion, unhurried provider-patient communication and bereavement interventions. This article is protected by copyright. All rights reserved.
Wool C; Kain V J; Mendes J; Carter BS
Acta Paediatrica
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1111/apa.13980
Parent Reported Outcomes Of Quality Care And Satisfaction In The Context Of A Life-limiting Fetal Diagnosis.
Parental Satisfaction; Patient Reported Outcomes; Perinatal Palliative Care; Quality Of Health Care
Objective: To identify which quality indicators (QI) predict patient satisfaction.
Methods: A cross-sectional design using a validated tool was administered using a Web-based platform. Parents (n = 405) who experienced a life-limiting fetal diagnosis and opted to continue their pregnancy provided feedback on 37 QI and satisfaction with prenatal care. Descriptive analyses and logistic regression identified relationships among variables.
Results: Parental satisfaction with care was 75.6%. Statistically significant differences in mean scores were reported with satisfied patients reporting higher agreement with quality indicators. Parents who were satisfied with their care had 1.9 times the odds of reporting that consistent care was provided (CI: 1.4–2.4, p < 0.01), 1.8 times the odds of reporting compassionate care (CI: 1.4–2.5, p < 0.01) and 1.8 times the odds that they received help to cope with their emotions (CI: 1.4–2.3, p < 0.01). The model correctly predicted parent satisfaction 92% of the time.
Conclusion: Provision of consistent prenatal care is an important quality indicator for this population of parents. The odds of securing satisfied parents increase when families are treated with compassion and given resources to help them cope with the emotionally devastating experiences associated with a life-limiting fetal diagnosis.
Wool C; Repke JT; Woods AB
Journal Of Maternal, Fetal And Neonatal Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Nurse Knowledge, Work Environment, And Turnover In Highly Specialized Pediatric End-of- Life Care.
Rn Turnover; Rn Work Environment; Advanced Practice Nurses; Nurse Intellectual Capital Theory; Perinatal Hospice; Perinatal Palliative Care
OBJECTIVE:
To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations.
METHODS:
Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data.
RESULTS:
Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = -.032, P < .05). Compared to organizations with no APNs professional experience, clinical nurse specialists and nurse practitioners significantly reduced RN turnover by 3 percentage points. No other nurse knowledge or work environment variables were associated with RN turnover. Several of the control variables were also associated with RN turnover in the study; Organizations serving micropolitan (β = -.041, P < .05) and rural areas (β = -.037, P < .05) had lower RN turnover compared to urban areas. Organizations with a technology climate where nurses used electronic medical records had a higher turnover rate than those without (β = .036, P < .05).
CONCLUSION:
The findings revealed that advanced professional experience in the form of APNs was associated with reductions in RN turnover. This suggests that having a clinical nurse specialist or nurse practitioner on staff may provide knowledge and experience to other RNs, creating stability within the organization.
Lindley LC; Cozad MJ
American Journal Of Hospice And Palliative Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Adult; Choice Behavior; Emotions; Female; Fetal Diseases/diagnosis; Fetal Diseases/mortality; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Needs Assessment; Palliative Care; Parents/psychology; Perinatal Care; Pregnancy; Prenatal Diagnosis/psychology; Qualitative Research; Young Adult
Developmental Task; Lethal Fetal Diagnosis; Longitudinal; Perinatal Palliative Care; Phenomenology; Pregnancy; Prenatal Diagnosis; Usa
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
METHODS:
This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
RESULTS:
Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
CONCLUSION:
The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
Cote-Arsenault D; Denney-Koelsch E
Social Science & Medicine
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1016/j.socscimed.2016.02.033
Parental Hopes, Interventions, And Survival Of Neonates With Trisomy 13 And Trisomy 18
End-of-life Decision Making; Palliative Care; Perinatal Hospice; Perinatal Palliative Care; Prenatal Diagnosis; Trisomy 13; Trisomy 18
Trisomy 13 and 18 are life-limiting conditions for which a palliative approach is frequently recommended. The objective of this study was to examine parental goals/decisions, the length of life of their child and factors associated with survival. Parents of children who lived with trisomy 13 or 18 that were part of English-speaking social networks were invited to participate in a questionnaire study. Participants answered questions about their hopes/goals, decisions regarding neonatal interventions, and the duration of their children's lives. The participants were 332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their hope after the diagnosis, the main themes invoked by parents were the following: meet their child alive (80% of parents with a prenatal diagnosis), spend some time as a family (72%), bring their child home (52%), and give their child a good life (66%). Parents wanted to give them a chance, but also reported their fears were medical complexity, pain and/or life in the hospital (61%). Healthcare providers recommended comfort care at birth to all parents. Life-sustaining interventions "as for any other child" was chosen as a plan of care by 25% of parents. Of the 216 children with full trisomy, 69% were discharged home after birth and 40% lived >1 y. The presence of a prenatal diagnosis was the strongest independent factor negatively associated with longevity: 36% of children with a prenatal diagnosis lived <24 hr and 47% were discharged home compared to 1% and 87%, respectively for children with a postnatal diagnosis (P < 0.01). Male gender, low-birth weight, and cardiac and/or cerebral anomaly were also associated with decreased survival (P < 0.05). After a prenatal diagnosis, palliative care at birth consisted of limited interventions, whereas after a postnatal diagnosis (median age of 6 days) it consisted of various interventions, including oxygen, ventilation, tube feeding and intravenous fluids, complicating the analysis. In conclusion, the goals of parents of children with trisomy 13 or 18 were to meet their child, be discharged home and be a family. Having a postnatal diagnosis was the independent factor most associated with these goals. Children with a postnatal diagnosis were treated "as any other children" until the diagnosis, which may give them a survival advantage, independent of palliative care. Rigorous transparency regarding specific interventions and outcomes may help personalize care for these children.
Janvier A
American Journal Of Medical Genetics Part C: Seminars In Medical Genetics
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1002/ajmg.c.31526
Delivery Room Deaths Of Extremely Preterm Babies: An Observational Study
Management; Epipage-2; Decision Making; Weeks Gestation; Palliative Care; Perspectives; Birth; Challenge; Infant; Delivery Rooms; Perinatal Palliative Care; Extreme Prematurity; Comfort Care; Death; Pediatrics
Palliative Care; Comfort Care; Delivery Room; Dying; Extreme Prematurity
OBJECTIVE:
Many extremely preterm neonates die in the delivery room (DR) after decisions to withhold or withdraw life-sustaining treatments or after failed resuscitation. Specific palliative care is then recommended but sparse data exist about the actual management of these dying babies. The objective of this study was to describe the clinical course and management of neonates born between 22 and 26 weeks of gestation who died in the DR in France.
DESIGN, SETTING, PATIENTS:
Prospective study including neonates, who were liveborn between 22+0 and 26+6 weeks of gestation and died in the DR in 2011, among infants included in the EPIPAGE-2 study at the 18 centres participating in this substudy of extremely preterm neonates. Data were collected by a questionnaire completed by the professional caring for each baby.
RESULTS:
The study included 73 children, with a median (IQR) gestational age of 24 (23-24) weeks. Median (IQR) duration of life was 53 (20-82) min. All but one were both wrapped and warmed. Pain was assessed for 72%, although without using any scale. Gasping was described for 66%. Comfort medications were administered to 35 children (50%), significantly more frequently to babies with gasping (p=0.001). Mother-child contact was reported for 78%, and psychological support offered to parents of 92%.
CONCLUSIONS:
Non-pharmacological comfort care and parental support were routinely given. Comfort medication was given much more frequently than previously reported in other DRs. These data should encourage work on the indications for comfort medication and the interpretation of gasping.
X Durrmeyer
Archives Of Disease In Childhood. Fetal And Neonatal Edition
2016
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
DOI: 10.1136/archdischild-2016-310718