Implementing Palliative care, based on family-centered care, in a highly complex neonatal unit
child; article; controlled study; female; human; major clinical study; male; retrospective study; palliative therapy; terminal care; prognosis; neonatal intensive care unit; newborn death; congenital malformation; observational study; mortality; transitional care; cause of death; intimacy
Objective To describe the causes and circumstances of neonatal mortality and determine whether the implementation of a palliative care protocol has improved the quality of end-of-life care. Methods A retrospective observational study including all patient mortalities between January 2009 and December 2019. Cause of death and characteristics of support during the dying process were collected. Two periods, before and after the implementation of a palliative care protocol, were compared. Results There were 344 deaths. Congenital malformations were the most frequent cause of death (45.6 %). Most patients died after the transition to palliative care (74.4 %). The most frequently cited criteria for initiating transition of care was poor neurocognitive prognosis (47.2 %). Parents accompanied their children in the dying process in 72 % of cases. Twenty-three percent of patients died outside the Neonatal Intensive Care Unit after being transferred to a private room to enhance family intimacy. After the addition of the palliative care protocol, statistically significant differences were observed in the support and patient experience during the dying process. Conclusions The most frequent causes of death were severe congenital malformations. Most patients died accompanied by their parents after the transition to palliative care. The implementation of a palliative care protocol helped to improve the family-centered end-of-life care.
Morillo PA; Clotet CJ; Camprubi CM; Blanco DE; Silla GJ; Riverola de Veciana A
Jornal de Pediatria
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.jped.2023.09.009" target="_blank" rel="noreferrer noopener">10.1016/j.jped.2023.09.009</a>
The NeoPACE study: study protocol for the development of a core outcome set for neonatal palliative care
child; adult; article; controlled study; human; male; newborn; palliative therapy; newborn death; perinatal death; terminal care; total quality management; systematic review; interview; newborn intensive care; health care personnel; therapy; Delphi study
Neonatal death is the leading category of death in children under the age of 5 in the UK. Many babies die following decisions between parents and the neonatal team; when a baby is critically unwell, with the support of healthcare professionals, parents may make the decision to stop active treatment and focus on ensuring their baby has a 'good' death. There is very little evidence to support the clinical application of neonatal palliative care and/or end-of-life care, resulting in variation in clinical provision between neonatal units. Developing core outcomes for neonatal palliative care would enable the development of measures of good practice and enhance our care of families. The aim of this study is to develop a core outcome set with associated tools for measuring neonatal palliative care. Method: This study has four phases: (1) identification of potential outcomes through systematic review and qualitative interviews with key stakeholders, including parents and healthcare professionals (2) an online Delphi process with key stakeholders to determine core outcomes (3) identification of outcome measures to support clinical application of outcome use (4) dissemination of the core outcome set for use across neonatal units in the UK. Key stakeholders include parents, healthcare professionals, and researchers with a background in neonatal palliative care. Discussion: Developing a core outcome set will standardise minimum reported outcomes for future research and quality improvement projects designed to determine the effectiveness of interventions and clinical care during neonatal palliative and/or end-of-life care. The core outcome set will provide healthcare professionals working in neonatal palliative and/or end-of-life support with an increased and consistent evidence base to enhance practice in this area. Trial registration: The study has been registered with the COMET initiative ( https://www.comet-initiative.org/Studies/Details/1470 ) and the systematic review is registered with the International Prospective Register of Systematic Reviews (PROSPERO) (CRD42023451068).
Gallagher K; Chant K; Mancini A; Bluebond-Langner M; Marlow N
BMC Palliative Care
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/10.1186/s12904-023-01326-x" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01326-x</a>
Redirecting Care: Compassionate Management of the Sick or Preterm Neonate at the End of Life
Infant, Newborn; terminal care; human; palliative therapy; patient care; newborn care; newborn death; pain; philosophy; review; personal experience; distress syndrome; emotionality; parental behavior; health care personnel; family relation; family support; doctor patient relationship; compassionate care; intersectoral collaboration; parent counseling; psychological care
The primary moral commitment of medical care has traditionally been based on a belief in the intrinsic value and significance of human life and a desire to protect the most vulnerable from harm. In this respect, the care of newborn infants who are at the border of viability is no different. Despite the intrinsic value of the life of every newborn, all agree that there is no moral duty of doctors to provide every possible treatment where the prognosis is hopeless. Instead, every action and treatment should be orientated towards the best interests of the individual child and towards the minimisation of serious harm. Decisions about the withholding or withdrawal of life-supportive treatment should be made collaboratively between professionals and parents, with discussion starting prior to delivery wherever possible. The goals of neonatal palliative care are to prevent or minimise pain and distressing symptoms and to maximise the opportunity for private, loving interaction between the dying baby and his or her parents and the wider family. Physical contact, gentle stroking, cuddles and tender loving care are of central importance for the dying baby. At the same time, we must provide psychological support for parents and family as they go through the profound and painful life experience of accompanying their baby to death. To enable a baby to die well, pain-free and in the arms of loving parents and carers is not a failure but a triumph of neonatal care.
Wyatt J; Hain R
Children
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/10.3390/children9030344" target="_blank" rel="noreferrer noopener">10.3390/children9030344</a>
Neonatal organ donation: Retrospective audit into potential donation in a single neonatal unit
Infant, Newborn; England; article; human; newborn; newborn death; terminal care; documentation; human tissue; newborn intensive care; patient referral; neonatal intensive care unit; surgery; infant; conversation; nurse; cause of death; eligibility; transplantation; brain injury; cooling; organ donor
Background: Research has shown that many babies who die in neonatal units could have been potential tissue and/or organ donors. Despite the existence of guidelines supporting its implementation, the incidence of neonatal donation remains rare in the United Kingdom. Aim: The aim of this audit was to retrospectively determine potential eligibility for neonatal tissue and/or organ donation referral in infants who died in a single UK tertiary-level neonatal unit between 2012 and 2021. Cause of death and documentation of any discussions held regarding referral for donation were also explored. Study design: An audit was undertaken to identify all neonatal deaths at a single tertiary-level NICU in London from 2012-2021. Infants who retrospectively could have been referred as potential tissue and/or organ donors were identified using current NHS Blood and Transplant inclusion and exclusion criteria. Results and conclusion: A significant missed potential for neonatal tissue and/or organ donation referrals was identified, which is likely not just limited to the unit audited. Causes of death were as expected for a tertiary level neonatal unit and centre for therapeutic cooling of babies born with hypoxic perinatal brain injuries. Only one documented conversation was found regarding neonatal donation. Relevance to clinical practice: To enable conversations regarding neonatal donation to become a routine part of end-of-life care discussions with families as appropriate, good links between neonatal healthcare professionals and Specialist Nurses in Organ Donation need to be established. This will facilitate the referral of all suitable neonates as potential donors and ensure that neonatal staff feel supported to care for babies identified as potential donors.
Ali F; Chant K; Scales A; Sellwood M; Gallagher K
Nursing in Critical Care
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/10.1111/nicc.12943" target="_blank" rel="noreferrer noopener">10.1111/nicc.12943</a>
Factors associated with place of death for children in South Yorkshire: a retrospective cohort study
anonymised data; article; child; cohort analysis; controlled study; ethnicity; female; gender; home care; hospice care; human; major clinical study; male; newborn; newborn death; palliative therapy; pediatrics; retrospective study
OBJECTIVES: Place of death (POD) is considered a key quality indicator for adult end of-life care, but paediatric evidence is limited. Data from Child Death Overview Panel (CDOP) databases provides an opportunity to describe trends in POD as regional paediatric palliative medicine (PPM) options have increased. Aims were to identify and describe trends in POD for children in South Yorkshire.
Renton K; Mayer A P T; Alison L; Yeomanson D
BMJ supportive & palliative 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/10.1136/bmjspcare-2018-001584" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2018-001584</a>
Grief and Bereavement Support for Families and Healthcare Professionals as Part of Integrated Care in Pediatric/Neonatal Intensive Care Units around the World (TH340A)
bereavement support; child; conference abstract; controlled study; convenience sample; demography; female; financial management; gender; health care personnel; high income country; human; male; neonatal intensive care unit; newborn; newborn death; palliative therapy; patient coding; pediatric intensive care unit; perception; prospective study; questionnaire; statistical significance; World Bank
Objectives: * Recognize how PICUs/NICUs implement GBS IPPC recommendations. * Describe how PICUs/NICUs' resource influence their GBS care provision as related to IPPC recommendations. Original Research Background: Grief and bereavement support (GBS) is important for the wellbeing and functioning of patients, families, and healthcare professionals (HCPs) and is part of the Integrated Model of Care (IMOC) in which ICU personnel address critical and palliative care (PC) needs concurrently. The Initiative for Pediatric Palliative Care (IPPC) guidelines can build PC capacity. Identifying existing PC resources/competencies amongst potential IPPC adopters maximizes implementation effectiveness. Research Objectives: We assessed if PICUs/NICUs implement GBS IPPC recommendations and if units' resources shape care provision.
Grunauer M; Bustamante G; Zambrano K
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2019.12.077" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2019.12.077</a>
Center, Gestational Age, and Race Impact End-of-Life Care Practices at Regional Neonatal Intensive Care Units
article; Black person; cause of death; central nervous system; child; cohort analysis; controlled study; do not resuscitate order; drug withdrawal; female; gestational age; human; infant; injury; life sustaining treatment; major clinical study; male; Neonatal Intensive Care Unit; newborn; newborn death; retrospective study; terminal care
Objective: To assess the impact of intercenter variation and patient factors on end-of-life care practices for infants who die in regional neonatal intensive care units (NICUs). Study design: We conducted a retrospective cohort analysis using the Children's Hospital Neonatal Database during 2010-2016. A total of 6299 nonsurviving infants cared for in 32 participating regional NICUs were included to examine intercenter variation and the effects of gestational age, race, and cause of death on 3 end-of-life care practices: do not attempt resuscitation orders (DNR), cardiopulmonary resuscitation within 6 hours of death (CPR), and withdrawal of life-sustaining therapies (WLST). Factors associated with these practices were used to develop a multivariable equation.
Fry J T; Matoba N; Datta A; DiGeronimo R; Coghill C H; Natarajan G; Brozanski B; Leuthner S R; Niehaus J Z; Schlegel A B; Shah A; Zaniletti I; Bartman T; Murthy K; Sullivan K M; Asselin J; Durand D; Dykes F; Evans J; Padula M; Pallotto E; Grover T; Piazza A; Reber K; Short B
Journal of Pediatrics
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.jpeds.2019.10.039" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2019.10.039</a>
Neonatal palliative care: A single site clinical audit
cause of death; newborn; terminal care; major clinical study; retrospective study; newborn death; hospital admission; conference abstract; human; child; female; male; social work; palliative therapy; clinical audit; speech; bereavement support; physiotherapy; gold; music therapy; nursing staff; seashore
Background: Best practice, palliative and end-of-life care (EOLC) enhances symptom management and quality-of-life for individuals who are palliative and dying, and their families. Although Gold Coast Health (GCH) has a dedicated, interdisciplinary palliative care service (including allied health) for adults, no equivalent local neonatal/paediatric service exists, highlighting inequity of access to care based on age. This project investigated allied health service usage of neonates requiring palliative and EOLC and their families in GCH. Method(s): A retrospective clinical audit was conducted to map the patient journey of all neonatal deaths within GCH between September 2013 and May 2018. Variables included: number, place and cause of death, diagnoses, number/reasons for hospital admissions, frequency and type of allied health interventions received. Result(s): 66 neonatal deaths were identified. 62 deaths occurred at GCUH, 2 elsewhere, and 2 at home. Of the 127 interventions carried out (excluding daily nursing staff) 72 were provided by acute service allied health professionals. Proportion of AH interventions included Social Work (85%), Physiotherapy (11%), Speech Pathology (3%), and Music Therapy (1%). Only 1 neonate was registered with QPPCS, however 20 received palliation. Full data will be presented. Conclusion(s): GCH requires a funded, appropriately resourced, interdisciplinary palliative care and bereavement service for neonates and children to ensure our families are provided with equitable access to evidence based, local services across the continuum of care (including in-the-home).
Gill K; Weir K; Delaney A; Moloney S; Herbert A; Noyes M; Hong T; Broadbent A; Scuffham P; Mickan S
Journal of Paediatrics and Child Health
2019
<a href="http://doi.org/10.1111/jpc.14409" target="_blank" rel="noreferrer noopener">10.1111/jpc.14409</a>
Neonatal end-of-life care: A single-center NICU experience in Israel over a decade
newborn care; newborn mortality; adrenal insufficiency/ep [Epidemiology]; anemia/ep [Epidemiology]; Article; brain edema/ep [Epidemiology]; brain hemorrhage/ep [Epidemiology]; cause of death; child parent relation; congenital malformation/ep [Epidemiology]; gestational age; Human; Incidence; Israel; Jerusalem; kidney failure/ep [Epidemiology]; Medical Decision Making; Middle East; necrotizing enterocolitis/ep [Epidemiology]; Newborn; newborn death; newborn hypoxia/ep [Epidemiology]; Newborn Intensive Care; newborn sepsis/ep [Epidemiology]; practice guideline; prematurity; priority journal; quality of life; Religion; respiratory failure/ep [Epidemiology]; sepsis/ep [Epidemiology]; shock/ep [Epidemiology]; treatment duration
OBJECTIVES: To follow changes in the causes of neonatal deaths in the NICU at Hadassah Medical Center, Jerusalem, Israel, over a decade; to examine trends regarding types of end-of-life-care provided (primary nonintervention, maximal intensive, and redirection of intensive care, including limitation of care and withdrawal of life-sustaining treatment); and to assess the parental role in the decision-making process given that the majority of the population is religious. METHODS: All neonates who died between 2000 and 2009 were identified. The causes and circumstances of death were Abstract: ed from the medical records. Trends in end-of-life decisions were compared between 2 time periods: 2000-2004 versus 2005-2009. RESULTS: Overall, 239 neonates died. The leading cause of death in both study periods was prematurity and its complications (76%). Among term infants, the leading cause of death was congenital anomalies (48%). Fifty-six percent of the infants received maximal intensive care; 28% had redirection of intensive care, of whom 10% had withdrawal of life-sustaining treatment; and 16% had primary nonintervention care. Over the years, maximal intensive care decreased from 65% to 46% (P < .02), whereas redirection of care increased from 19.2% to 37.5% (P < .0005). An active parental role in the end-of-life decision process increased from 38% to 84%. CONCLUSIONS: Even among religious families of extremely sick neonates, redirection of care is a feasible treatment option, suggesting that apart from survival, quality-of-life considerations emerge as an important factor in the decision-making process for the infant, parents, and caregivers.
2013-06
Eventov-Friedman S; Kanevsky H; Bar-Oz B
Pediatrics
2013
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/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</a>
Analysis Of Death And Palliative Care In A Neonatal Intensive Care Unit
Neonatal Intensive Care Unit; Newborn Death; Palliative Therapy; Analgesia; Analgesic Agent; Article; Clinical Article; Descriptive Research; Female; Follow Up; Hospitalization; Human; Male; Newborn; Pain Assessment; Prematurity; Resuscitation; Retrospective Study; Sedation; Sedative Agent
Objective: To characterize cases of children admitted to the Neonatal Intensive Care Unit of a tertiary university hospital who died in the period ranging from January 01, 2012 to July 31, 2014, and who required palliative care and/or were subjected to it. Methods: A retrospective descriptive study was carried out by reviewing the medical records of these patients to collect data and to perform descriptive statistical analysis. Results: During the study period, 49 children died after at least 48 hours from the time of admission. Of those, 18% children were extremely premature infants and 77% children had malformations. Although necessary for all of the patients in this study, palliative care was provided for only 20% of patients who died. Among the 12 babies who were not resuscitated, 33% of babies were not in palliative care. The Pain and Palliative Care Unit of the institution followed only four neonates in palliative care. These patients were using many invasive devices, had high therapeutic investment, and also altered pain scale scores. Conclusions: This study exhibited a large proportion of newborn infants with serious diseases and health conditions. In a few cases the patients received palliative care, but most of them were not even discussed under palliative point of view. We hope that this study will call attention to the need to propose protocols and implement training for the best treatment of these children.
Marcola L; De Barbosa S M M; Zoboli I; Polastrini R T V; Ceccon M E J
Revista Paulista De Pediatria
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).
10.1590/1984-0462/;2017;35;2;00012
How Do Neonatal Units Support Siblings Following Loss?-a National Survey
Sibling; Bereavement Support; Counselor; Doctor Patient Relation; England; Hospice; Human; Human Experiment; Model; Neonatal Intensive Care Unit; Newborn; Newborn Death; Nurse; Psychologist; Social Welfare; Terminal Care
Background Supporting siblings following loss of an infant is increasingly recognised as an important aspect of neonatal bereavement support. The grief process in children is often complicated by feelings of loss, guilt as well insecurity about their parental wellbeing. There are some existing recommendations from both the Royal College of Paediatrics and Child Health and the British Association of Perinatal Medicine on the various aspects of family support but there is great variation in practice when it comes to supporting siblings following loss of a neonate. Aims/objectives The aim of this study was to explore the practices across all the Neonatal Intensive Care Units (NICUs) in England focussing on sibling support following neonatal loss. We studied the interventions, support systems and resources available for bereaved siblings within the neonatal service. Methodology We conducted a structured telephonic survey of all the 44 NICUs in England. A proforma was used and specific questions were asked from bereavement nurse within each neonatal service regarding resources, availability of multidisciplinary teams and written information on sibling support following neonatal loss. This study was completed over a period of 6 weeks between May and June 2016. The data was collected by the research team and analysed descriptively. Results Results from 39 out of the 44 NICUs. 34% of the units provide support for siblings after neonatal death. This was provided by a combination of counsellors, psychologists/family support nurse within the neonatal team. 60% involved external services including hospice or a charity organisation to provide long term support. Only 50% of units had any written materials or resources focussed on sibling support. 10% of the NICUs did not have an identified bereavement support/end of life care team. Conclusion This study identifies significant variation in practice across the NICUs in the country in terms of supporting siblings following neonatal death. It reiterates the need for a much more unified approach and sharing resources/good practice models across the different units. Sibling support should be an integral component of the bereavement support offered by neonatal services.
Henderson R; Minchella S; Vasudevan C
Archives Of Disease In Childhood
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).
10.1136/archdischild-2017-313087.508
Neonatal Death In The Emergency Department: When End-of-life Care Is Needed At The Beginning Of Life
Emergency Ward; Newborn Death; Terminal Care; Bereavement; Doctor Patient Relation; Family; Human; Infant; Newborn; United States
The death of a neonate is devastating for all involved. Each year, critically ill neonates present to emergency departments across the United States. These infants require acute medical interventions with a goal of stabilization. Despite these efforts, hundreds of infants die every year in emergency departments across the United States. Emergency care providers, unaccustomed to providing neonatal end-of-life care, may feel unsure about how to best care for families during resuscitative measures and after neonates die. There is literature to suggest that increased knowledge and advance preparation can calm fears of providers caring for patients in such tragic situations. We aim to provide in this article a broad overview of a variety of topics related to neonatal death and bereavement care. Copyright © 2016 Elsevier Inc.
Fry JT; Henner N
Clinical Pediatric Emergency 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).
10.1016/j.cpem.2016.04.001