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>
Patterns of Pediatric Palliative and End-Of-Life Care in Neonatal Intensive Care Patients in the Southern U.S
Terminal Care; Infant Newborn; end-of-life care; pediatric palliative care; Neonatal intensive care; intensity of care
OBJECTIVE: Describe pediatric palliative care (PPC) patterns and treatment intensity during the last 48 hours of life among neonatal intensive care unit (NICU) patients in the Southern U.S. who received specialized PPC. DESIGN: Retrospective cohort analysis SETTING/ SUBJECTS: Infants who received PPC consultation in the NICU before death in two NICUs (in Alabama and Mississippi) from 2009-2017 (n=195). MEASUREMENTS: Medical record abstraction included: clinical characteristics of NICU infants, palliative and end-of-life care characteristics, patterns of PPC, and intensive medical treatments in the last 48 hours of life. RESULTS: The sample was racially (48.2% Black) and geographically (35.4% rural) diverse. Most infants died after withdrawal of life-sustaining interventions (58%) and had do not attempt resuscitation orders documented (75.9%); very few infants enrolled in hospice (6.2%). Initial PPC consult occurred a median of 13 days after admission and a median of 17 days before death. Infants with a primary diagnosis of genetic or congenital anomaly received earlier PPC consultation (p= 0.02) compared to other diagnoses. In the last 48 hours of life, NICU patients received intensive interventions including mechanical ventilation (81.5%), CPR (27.7%) and surgeries or invasive procedures (25.1%). Black infants were more likely to receive CPR compared to White infants (p= 0.04). CONCLUSION: Overall, PPC consultation occurred late in NICU hospitalizations, infants received high-intensity medical interventions in the last 48 hours of life, and there are disparities in intensity of treatment interventions at end of life. Further research is needed to explore if these patterns of care reflect parent preferences and goal concordance.
Currie ER; Wolfe J; Boss R; Johnston EE; Paine C; Perna SJ; Buckingham S; KcKillip KM; Li P; Dionne-Odom JN; Ejem D; Morvant A; Nichols C; Bakitas MA
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2023.01.025" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2023.01.025</a>
Moral Distress in the Neonatal Intensive Care Unit: What Is It, Why It Happens, and How We Can Address It
decision-making; decision-making; end-of-life care; ethical confrontation; medical futility; moral distress; neonatal; intensive care; periviability; end-of-life care; ethical confrontation; medical futility; moral distress; neonatal intensive care; periviability
Moral distress is prevalent in the neonatal intensive care unit (NICU), where decisions regarding end-of-life care, periviable resuscitation, and medical futility are common. Due to its origins in the nursing literature, moral distress has primarily been reported among bedside nurses in relation to the hierarchy of the medical team. However, it is increasingly recognized that moral distress may exist in different forms than initially described and that healthcare professions outside of nursing experience it. Advances in medical technology have allowed the smallest, sickest neonates to survive. The treatment for critically ill infants is no longer simply limited by the capability of medical technology but also by moral and ethical boundaries of what is right for a given child and family. Shared decision-making and the zone of parental discretion can inform and challenge the medical team to balance the complexities of patient autonomy against harm and suffering. Limited ability to prognosticate and uncertainty in outcomes add to the challenges faced with ethical dilemmas. While this does not necessarily equate to moral distress, subjective views of quality of life and personal values in these situations can lead to moral distress if the plans of care and the validity of each path are not fully explored. Differences in opinions and approaches between members of the medical team can strain relationships and affect each individual differently. It is unclear how the various types of moral distress uniquely impact each profession and their role in the distinctively challenging decisions made in the NICU environment. The purpose of this review is to describe moral distress and the situations that give rise to it in the NICU, ways in which various members of the medical team experience it, how it impacts care delivery, and approaches to address it. © Copyright © 2020 Mills and Cortezzo.
Mills M; Cortezzo DE
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.2020.00581" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.00581</a>
NICU Nurses' Moral Distress Surrounding the Deaths of Infants
end-of-life; ethical dilemma; infants and families; moral distress; neonatal intensive care; nursing
BACKGROUND: As Korean neonatal nurses frequently experience the deaths of infants, moral distress occurs when they provide end-of-life care to the infants and their families. Although they need to care for the patients' deaths and consequently experience burnout and turnover due to moral distress from the situation, there is a lack of a support for nurses. Moreover, not much information is available on the moral distress of neonatal nurses. There is a need to better understand Korean neonatal nurses' moral distress to develop and implement appropriate supports. OBJECTIVE: This study aimed to describe nurses' experience of moral distress when they provide end-of-life care to infants and their families in neonatal intensive care units. RESEARCH DESIGN: This is a secondary analysis qualitative study. Content analysis was performed based on Corley's theory of moral distress to develop a codebook and identify themes regarding moral distress among the nurses. PARTICIPANTS AND RESEARCH CONTEXT: Qualitative data were collected from 20 nurses working in two NICUs in Seoul, South Korea. ETHICAL CONSIDERATIONS: The original study obtained permission from a university's institutional review board (IRB). This secondary analysis study obtained the exemption from another university's IRB. Nurses' participation was voluntary and confidential. FINDINGS: The nurses' moral distress was derived when they faced moral constraints and/or moral conflicts. Two distinct categories of moral constraints and four distinct categories of moral conflicts were identified among the neonatal nurses. In addition, impacts of moral distress on patients and nurses were identified. CONCLUSIONS: This study identified occasions neonatal nurses experience moral distress, and thus can guide in developing and implementing effective interventions to decrease their moral distress and improve their resilience in end-of-life care by providing insight into neonatal nurses' needs for support in end-of-life care.
Han S; Min H; Kim S
Nursing Ethics
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/10.1177/09697330221134978" target="_blank" rel="noreferrer noopener">10.1177/09697330221134978</a>
Ethical Issues around Death and Withdrawal of Life Support in Neonatal Intensive Care
Death; Ethics; Life support; Neonatal intensive care
Amongst all the traumatic experiences in a human life, death of child is considered the most painful, and has profound and lasting impact on the life of parents. The experience is even more complex when the death occurs within a neonatal intensive care unit, particularly in situations where there have been conflicts associated with decisions regarding the redirection of life-sustaining treatments. In the absence of national guidelines and legal backing, clinicians are faced with a dilemma of whether to prolong life-sustaining therapy even in the most brain-injured infants or allow a discharge against medical advice. Societal customs, vagaries, and lack of bereavement support further complicate the experience for parents belonging to lower socio-economic classes. The present review explores the ethical dilemmas around neonatal death faced by professionals in India, and suggests some ways forward. Copyright © 2021, The Author(s).
Pant S
Indian Journal of Pediatrics
2022
<a href="http://doi.org/10.1007/s12098-021-03810-9" target="_blank" rel="noreferrer noopener">10.1007/s12098-021-03810-9</a>
Healthcare Satisfaction and Unmet Needs Among Bereaved Parents in the NICU
Neonatal intensive care; Newborn Infant; Bereavement; Delivery of Health Care; Infant; Needs Assessment; Palliative Care; Parents; Personal Satisfaction; Prospective Studies; Terminal Care
BACKGROUND: Learning directly from bereaved parents about their experiences in the neonatal intensive care unit (NICU) can improve services at end-of-life (EOL) care. Parents who perceive that their infant suffered may report less satisfaction with care and may be at greater risk for distress after the death. Despite calls to improve EOL care for children, limited research has examined the EOL experiences of families in the NICU. PURPOSE: We examined parent perceptions of their infant's EOL experience (eg, symptom burden and suffering) and satisfaction with care in the NICU. METHODS/SEARCH STRATEGY: Forty-two mothers and 27 fathers (representing 42 infants) participated in a mixed-methods study between 3 months and 5 years after their infant's death (mean = 39.45 months, SD = 17.19). Parents reported on healthcare satisfaction, unmet needs, and infant symptoms and suffering in the final week of life. FINDINGS/RESULTS: Parents reported high levels of healthcare satisfaction, with relative strengths in providers' technical skills and inclusion of the family. Greater perceived infant suffering was associated with lower healthcare satisfaction and fewer well-met needs at EOL. Parents' understanding of their infant's condition, emotional support, communication, symptom management, and bereavement care were identified as areas for improvement. IMPLICATIONS FOR PRACTICE: Parents value comprehensive, family-centered care in the NICU. Additionally, monitoring and alleviating infant symptoms contribute to greater parental satisfaction with care. Improving staff knowledge about EOL care and developing structured bereavement follow-up programs may enhance healthcare satisfaction and family outcomes. IMPLICATIONS FOR RESEARCH: Prospective studies are needed to better understand parental perceptions of EOL care and the influence on later parental adjustment.
Baughcum AE; Fortney CA; Winning AM; Dunnells ZDO; Humphrey LM; Gerhardt CA
Advances in Neonatal Care
2020
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<a href="http://doi.org/10.1097/ANC.0000000000000677" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000677</a>
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
palliative care; neonatal intensive care; perinatal care; NICU; decision making; premature birth
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.
Jager S; Kavanaugh K; Hoffman S; Laitano T; Jeffries E; Tucker Edmonds B
The Journal of perinatal & neonatal nursing
2020
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<a href="http://doi.org/10.1097/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000483</a>
Whom are we seeking to protect? Extremely preterm babies and moral distress
End-of-life care; Decision-making; Neonatal intensive care; Moral distress; Ethical confrontation; Prematurity
Advances in perinatal care bring with them ethical challenges and difficult questions. When should we provide life-sustaining interventions, and who should decide? Particularly at the edges of viability, some clinicians may feel required to provide a level of care that they believe is not in the patient's interests, resulting in moral distress. This article will discuss the complex nature of moral distress arising during the care of extremely preterm babies. It will describe the challenges and cognitive biases present when contemplating potential harms to the baby and recognize the possible costs to both healthcare provider and baby when moral distress arises. Both clinicians caring for extremely preterm babies and the families themselves can experience moral distress. This article argues that for clinicians, recognizing the range of possible sources of moral distress is vital in order to appropriately address moral distress. Moral distress may arise from a desire to protect the baby, but also from an impulse to protect oneself from the emotional burdens of care. Addressing moral distress requires reflection on the factual beliefs, experiences and personal values which lie behind the distress, both within one self in and in discussion with colleagues. Moral distress indicates that a situation is ethically challenging, but it does not necessarily mean that a wrong decision has been made.
Prentice TM; Gillam L; Davis PG; Janvier A
Seminars in Perinatology
2021
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<a href="http://doi.org/10.1016/j.semperi.2021.151549" target="_blank" rel="noreferrer noopener">10.1016/j.semperi.2021.151549</a>
Neonatal end-of-life decisions and ethical perspectives
Decision-making; Ethics; End-of-life; Neonatal intensive care; Law.
End-of-life decisions are usually required when a neonate is at high risk of disability or death, and such decisions involve many legal and ethical challenges. This article reviewed the processes of ethical decision-making for severely ill or terminal neonates, considering controversial issues including the followings: (i) identifying primary decision makers, (ii) the role of law and guidelines, and (iii) changes in treatment controversy, law and regulations over twenty years in several European countries such as Switzerland, Germany, Italy, United Kingdom, France, the Netherlands, Sweden, and Spain. This review study conducted on accessible articles from PubMed, Google Scholar, Web of Science and Scopus databases. Based on two studies in 2016 and 1996, neonatologists reported that withholding intensive care, withdrawing mechanical ventilation or life-saving drugs, and involvement of parents in decision-makings have become more acceptable as time passes, indicative of trend change. Trend of physicians on how end the life of neonates, at risk of death, varies in different countries, and cultural factors, parents' involvement in decisions and gestational age are factors considered in end-of-life decision-making. Future investigations continuously need to identify upcoming ethical aspects of proper decision-making.
Soltani Gerdfaramarzi M; Bazmi S
Journal of Medical Ethics and History of Medicine
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/10.18502/jmehm.v13i19.4827" target="_blank" rel="noreferrer noopener">10.18502/jmehm.v13i19.4827</a>
Emotional Responses of Neonatal Intensive Care Nurses to Neonatal Death
death; neonatal intensive care; nurse; emotions; dying baby
The study was planned as a descriptive qualitative study to determine the emotional responses of neonatal intensive care nurses to work in the neonatal unit and to neonatal deaths. The sample of the study consisted of 7 nurses who work at the neonatal intensive care unit since data saturation was achieved. The data were collected using the "Semi-Structured In-Depth Interview Guide for Nurses". The data were analyzed using the content analysis method. Following codes were reached as a result of the study: 'happiness-sadness', 'professional satisfaction-exhaustion', 'empathy', 'responsibility-guilt', 'hope-despair' under the theme of being a nurse at neonatal unit'; 'unforgettable first loss', 'professionalism in intervention-and then: sadness, 'mature-premature difference', 'difficulty in giving hurtful news-inability to associate with death' and 'attachment-burnout' under the theme of experiencing neonatal loss.It was seen that nurses' emotions about working at neonatal intensive care unit were generally positive; however, these emotions changed to negative after neonate's relapsing and death.
Köktürk Dalcalı B; Can Ş; Durgun H
Omega
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/10.1177/0030222820971880" target="_blank" rel="noreferrer noopener">10.1177/0030222820971880</a>
Grief among Neonatal Intensive Care Nurses
grief; neonatal intensive care; neonatal death; nurses
BACKGROUND: Nurses working in the high-stress environment of the neonatal intensive care unit (NICU) are at high risk of experiencing grief after death of a baby. DESIGN: Using a quantitative cross-sectional design, a convenience sample of nurses working in a Level IV NICU in Northern California, United States completed online surveys. Level of grief among NICU nurses, perceptions of grief support available at their institution, and past and future grief coping methods were assessed. PARTICIPANTS: A diverse sample of 55 NICU nurses, mean age 45.5 (SD = 11.7) years. SETTING: A high-acuity NICU in one large Northern California hospital. METHODS: Participant demographic data and the Revised Grief Experience Inventory were completed online. RESULTS: Total grief scores ranged between 22 and 82 with a mean of 46.9 (SD = 17.4). Sixty percent (n = 33) moderately/strongly disagreed on adequacy of current grief support services at their institution and 81% (n = 45) reported hospital staff could benefit from additional grief support. Nurses' past grief support included family, friends, and church. Future grief resources would include family, friends, and co-workers. Participants indicated need for debriefing and additional nurse staffing resources at the time of a patient death. CONCLUSIONS: Neonatal intensive care unit nurses in our study reported experiencing grief. Debriefing and bereavement support may be helpful for nurses working in high-stress environments where there is a higher likelihood of patient death.
Rodriguez A; Spilker A; Goyal D
The American Journal of Maternal/Child Nursing
2020
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<a href="http://doi.org/10.1097/nmc.0000000000000634" target="_blank" rel="noreferrer noopener">10.1097/nmc.0000000000000634</a>
Behavioral Observation of Infants with Life-Threatening or Life-Limiting Illness
palliative care; neonatal intensive care; infant; behavioral observations; COMFORT-B; N-PASS
BACKGROUND: Infants in the neonatal intensive care unit experience aversive stimuli that cause pain and distress. Maintaining adequate relief from pain and distress is challenging because of infants' varying ages and stages of development and their nonverbal status. Thus, pain and distress must be interpreted by a health care provider or other proxy from their own observations or perceptions. There is no standard research or clinical measure for pain and distress in infants. OBJECTIVE: The purpose of this analysis was to evaluate the use of the COMFORT-Behavior Scale as a measure of pain and distress in infants diagnosed with life-threatening or life-limiting illness in the neonatal intensive care unit in comparison with the nurse-documented Neonatal Pain, Agitation and Sedation Scale, the infants' Technology Dependence Scale, and the mothers' report of total perceived symptom scores. METHODS: Infants diagnosed with life-threatening or life-limiting illnesses and hospitalized in a level IV neonatal intensive care unit in the Midwestern United States and their parents were included. Measurement of pain and distress in infants was collected weekly from enrollment through 12 weeks or until discharge whichever occurred first. Observations for the COMFORT-Behavior Scale were conducted before and after standard caregiving activities. Pearson r correlations were used to compare means between pain and distress, technology dependence, and mothers' total perceived symptom scores over time. RESULTS: Data from seventy-eight infants (46 males, 32 females) ages 23-41 weeks gestation at birth were analyzed. No correlations were found among the COMFORT-Behavior Scale; Neonatal Pain, Agitation, and Sedation Scale; and mothers' total perceived symptom scores. Moderate correlations were found among the Technology Dependence Scale; mothers' total perceived symptom scores; and the Neonatal Pain, Agitation, and Sedation Scale. DISCUSSION: Performing COMFORT-B observations can be challenging, and it is unclear whether the information obtained from the COMFORT-B added to the assessment of the infant's pain and distress that is typically recorded in the health record or from parents. Further evaluation is needed to determine if it is more reliable to collect the Neonatal Pain, Agitation, and Sedation Scale scores rather than conduct observations using the COMFORT-Behavior Scale in studies of infants with life-threatening and life-limiting illness in the NICU.
Fortney C A; Sealschott S D; Pickler R H
Nursing Research
2020
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<a href="http://doi.org/10.1097/nnr.0000000000000456" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000456</a>
The impact of ethical and legal decision-making in neonatal intensive care on psychosocial wellbeing of the health care professionals the overview of the HUNIC Project study design
ethics; social support; neonatal intensive care; end-of-life decision making; job satisfaction; neonatologists; health behavior; medical personnel; study design; well-being of health workers
The paper introduces the multidisciplinary HUNIC project, which is partly based on the EURONIC study. The objective of the HUNIC study is to assess the attitude and opinion of healthcare providers in Hungarian NICUs about end-of-life decisions, the decision-making process, parental communication, to analyse the differences between HUNIC results in 2015-2016 and EURONIC results in 1996-1997, to compare the attitudes of neonatologists and neonatal nurses, and to identify factors that might affect those attitudes and opinions. A further important objective of the HUNIC study is to compare these attitudes and opinions of neonatal care providers with their personal work experience, educational background in the bioethics field, social support, work and life satisfaction, burnout, health behaviour and psychosocial health. This paper aims to present the methodology of an extensive, complex, and multidisciplinary survey (HUNIC) within the framework of the EURONIC. Copyright © 2019 Semmelweis University Institute of Mental Health, Budapest
Feith H J; Kiss Z S; Pilling J; Kovacs A; Szabo M; Cuttini M; Berbik I; Gezsi A; Gradvohl E
European Journal of Mental Health
2019
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<a href="http://doi.org/10.5708/EJMH.14.2019.2.6" target="_blank" rel="noreferrer noopener">10.5708/EJMH.14.2019.2.6</a>
Decision-making at the limit of viability: an overview
ethics; fetal viability; neonatal intensive care; premature birth; shared decision-making
Babies born at the limit of viability have a high risk of morbidity and mortality. Despite great advances in science, the approach to these newborns remains challenging. Thus, this study reviewed the literature regarding the treatment of newborns at the limit of viability. There are several interventions that can be applied before and after birth to increase the baby's survival with the least sequelae possible, but different countries make different recommendations on the gestational age that each treatment should be given. There is more consensus on the extremities of viability, being that, at the lower extremity, comfort care is preferred and active care in newborns with higher gestational age. The higher the gestational age at birth, the higher the survival and survival without morbidity rates. At all gestational ages, it is important to take into account the suffering of these babies and to provide them the best quality of life possible. Sometimes palliative care is the best therapeutic approach. The parents of these babies should be included in the decision-making process, if they wish, always respecting their needs and wishes. Nevertheless, the process of having such an immature child can be very painful for parents, so it is also important to take into account their suffering and provide them with all the necessary support. This support should be maintained even after the death of the newborn.
Lemos A; Soares H; Guimaraes H
Minerva pediatrica
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/10.23736/S0026-4946.20.05825-9" target="_blank" rel="noreferrer noopener">10.23736/S0026-4946.20.05825-9</a>
Parents' Descriptions of Neonatal Palliation as a Treatment Option Prior to Periviable Delivery
decision making; neonatal intensive care; NICU; palliative care; perinatal care; premature birth
During periviable deliveries, parents are confronted with overwhelming and challenging decisions. This study aimed to qualitatively explore the language that pregnant women and important others utilize when discussing palliation, or "comfort care," as a treatment option in the context of periviability. We prospectively recruited women admitted for a threatened periviable delivery (22-25 weeks) at 2 hospitals between September 2016 and January 2018. Using a semistructured interview guide, we investigated participants' perceptions of neonatal treatment options, asking items such as "How was the choice of resuscitation presented to you?" and "What were the options presented?" Conventional content analysis was used and matrices were created to facilitate using a within- and across-case approach to identify and describe patterns. Thirty women and 16 important others were recruited in total. Participants' descriptions of treatment options included resuscitating at birth or not resuscitating. Participants further described the option to not resuscitate as "comfort care," "implicit" comfort care, "doing nothing," and "withdrawal of care." This study revealed that many parents facing periviable delivery may lack an understanding of comfort care as a neonatal treatment option, highlighting the need to improve counseling efforts in order to maximize parents' informed decision-making.
Jager S; Kavanaugh K; Hoffman S; Laitano T; Jeffries E; Tucker Edmonds B
The Journal of perinatal & neonatal nursing
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/JPN.0000000000000483" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000483</a>
Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Quinn M; Weiss A B; Crist J D; Fortney C A
Advances in Neonatal Care
2020
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<a href="http://doi.org/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000707</a>
The relationship between providing neonatal palliative care and nurses' moral distress: an integrative review
Nursing Staff; neonatal intensive care; Burnout; moral distress; review
Moral distress has been identified in multiple clinical settings especially in critical care areas. The neonatal intensive care unit (NICU) has frequent situations in which moral distress may occur including providing palliative care. The purpose of this integrative review was to determine the relationship between the provision of palliative care in a NICU and nurses' moral distress. The evidence reviewed supports that moral distress does occur with the provision of neonatal palliative care. An interdisciplinary care team, an established protocol, and educational interventions may decrease moral distress in nurses providing end-of-life care to infants in the NICU.
2014-10
Cavinder C
Advances In Neonatal Care
2014
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Journal Article
<a href="http://doi.org/10.1097/ANC.0000000000000100" target="_blank" rel="noreferrer">10.1097/ANC.0000000000000100</a>
Implementing a palliative care program in a newborn intensive care unit
PedPal Lit; Humans Infant; neonatal intensive care; Neonatal/methods Models; Newborn Intensive Care Units; TheoreticalPalliative Care Program Development
In the United States the majority of infants who die in the first 27 days end their lives in the neonatal intensive care unit (NICU). This article describes the implementation of a NICU-based team approach to providing end-of-life care to dying infants and their families. Timeline, activities, and resultant improvements in family care and staff support are described. Moral distress among nurses caring for dying infants is discussed. A case study, neonatal palliative care policy, palliative care pathway, and lactation suppression guidelines for mothers following infant death are presented. More research is needed to verify improvements in neonatal, family, and staff support with palliative care programs in the NICU.
2006
Gale G; Brooks A
Advances In Neonatal Care
2006
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).
Journal Article
<a href="http://doi.org/10.1016/j.adnc.2005.11.004" target="_blank" rel="noreferrer">10.1016/j.adnc.2005.11.004</a>
Parents and professionals in the NICU: communication within the context of ethical decision making--an integrative review
PedPal Lit; neonatal intensive care; Attitude to Health CanadaCommunication Cooperative BehaviorDecision Making/ethics Disabled Children/legislation & jurisprudence Europe Family Nursing/ethics/organization & administration/psychology Frustration Great Britain Humans Infant; Hospital/ethics/psychology Parents/education/psychology Patient Care Planning/ethics Patient-Centered Care/ethicsProfessional-Family Relations/ethics United States Withholding Treatment/ethics/legislation & jurisprudence; Neonatal/ethics/organization & administration/psychology Neonatal Nursing/ethics/organization & administration Nursing Methodology Research Nursing Staff; Newborn Informed Consent/ethics/psychology Intensive Care Units
Communication between parents and professionals in the NICU is a necessary part of collaborative decision making in the provision of family-centered care. Decisions with ethical components, those regarding treatment plans or neonatal research enrollment, need to be made conjointly with parents and health care professionals. This article reviews the present state of knowledge of how parents' input can be facilitated in regard to decisions made about their children. Research studies involving decisions made with ethical components in the NICU since the advent of the Baby Doe regulations reveal parents' frustration with communication practices, their need for control of information, and the trust in their children's health care providers that is required to best facilitate their input into ethical decisions made about their children.
2005
Ward FR
Neonatal Network
2005
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).
Journal Article
<a href="http://doi.org/10.1891/0730-0832.24.3.25" target="_blank" rel="noreferrer">10.1891/0730-0832.24.3.25</a>
Barriers of palliative care in neonatal intensive care units: Attitude of neonatal nurses in southeast Iran
2017; Attitude; Barriers; Neonatal Intensive Care; Neonatal Intensive Care Units; Neonatal Nurses; Neonatal Palliative Care; Nurses; Nursing; Palliative Care; Southeast Iran
Objective: Neonatal nurses face numerous barriers in providing end-of-life (EOL) care for neonates and their families. Addressing neonatal nurses’ attitudes could provide insight into barriers that impede neonatal palliative care (NPC). This study thus conducted to examine neonatal nurses’ attitude toward barriers in providing NPC in Southeast Iran. Method: In this cross-sectional study, a translated modified version of Neonatal Palliative Care Attitude Scale was used to examine attitudes of 70 nurses toward barriers of palliative care in 3 neonatal intensive care units in Southeast Iran. Results: Findings indicated that overall 42.63% of nurses were strongly agreed or agreed with the proposed barriers in NPC. Among all categories, the highest and the lowest scores belonged to the categories of 'insufficient resources' (3.42 ± 0.65) and 'inappropriate personal and social attitudes' (2.33 ± 0.48), respectively. Neonatal nurses who had less education and study regarding NPC reported the presence of more barriers to NPC in the categories of 'inappropriate organizational culture' and/or 'inadequate nursing proficiency.' Also, younger nurses had more positive attitudes toward the category of inappropriate organizational culture as being a barrier to provision of NPC (4.62). Conclusion: The findings suggest that developing a context-based instrument is required to represent the barrier more precisely. Neonatal palliative care can be improved by establishing a special environment to focus on infants’ EOL care. This establishment requires standard palliative care guidelines and adequate NPC-trained nurses. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Azzizadeh FM; Banazadeh M; Ahmadi JS; Razban F
American Journal Of Hospice & Palliative Medicine
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).
<a href="http://doi.org/10.1177/1049909115616597" target="_blank" rel="noreferrer">10.1177/1049909115616597</a>
Congenital Malformations, Palliative Care And Postnatal Redirection To More Intensive Treatment - A Review At A Swiss Tertiary Center
Antenatal Diagnostics; Congenital Malformations; Neonatal Intensive Care; Pediatric Palliative Care; Perinatology
PURPOSE: The so-called lethal malformations pose ethical challenges. Most affected fetuses die before or at birth. Live-born neonates commonly receive palliative care. If the postnatal course is better than expected, redirection towards more treatment may occur. We aimed to analyze this in a Swiss patient cohort. MATERIALS AND METHODS: Over 6 years, fetal malformation was suspected in 1113 cases. We identified patients prenatally assigned to palliative care, assessed pre- and postnatal diagnoses, and outcomes. RESULTS: Fourteen neonates received palliative care. Eleven patients received palliative care following late termination of pregnancy, for three, palliative care was planned and the fetus died during delivery, for two, the outcome was unknown (incomplete documentation). Genetic testing was performed in 50%. The predominant diagnostic group was central nervous system malformations (33%), followed by chromosomal aberrations (20%) and renal anomalies (17%). One child assigned to palliative care was resuscitated. Antenatal findings were anhydramnios and pulmonary hypoplasia. Postnatally, respiration was better than expected. The neonate was admitted to intensive care, died on day one. CONCLUSIONS: Nervous system malformations seem to be a major criterion for foregoing life-sustaining interventions. Redirection towards more treatment is rare. This may reflect precise prenatal prognostication; a degree of self-fulfilling prophecy cannot be excluded.
Pfeifer Ulrich; Gubler Deborah; Bergstraesser E; Bassler Dirk
The Journal Of Maternal-fetal & Neonatal Medicine: The Official Journal Of The European Association Of Perinatal Medicine, The Federation Of Asia And Oceania Perinatal Societies, The International Society Of Perinatal Obstetricians
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).
10.1080/14767058.2017.1311317