Care after death in children's hospices: recommendations for moving and handling, and for managing physiological deterioration
Bereavement; Death; End-of-life; Families; Grief; Palliative care; Professional handling; Terminal care
BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. AIM: The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. METHOD(S): An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. FINDINGS: Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. CONCLUSION(S): Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death. Copyright © 2022 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
Tatterton M; Honour A; Billington D; Kirkby L; Lyon JA; Lyon N; Gaskin J
Nursing Children and Young People
2022
<a href="http://doi.org/10.7748/ncyp.2022.e1412" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2022.e1412</a>
“A Child's Death Is Different”: Responding to the Needs, Preferences, and Challenges Shared by Hospice Nurses Caring for Dying Children in the Community (FR214)
Arkansas; Child; Community Health Services; Death; Hospices; Mississippi; Nurses; Palliative Care; Quality of Life; Self Report; Tennessee
Outcomes 1. Review the limited literature on barriers to provision of pediatric hospice care to children in the community and define the challenge of better equipping community-based hospice nurses to care for pediatric patients 2. Describe outcomes of mixed-methods survey- and interview-based exploration of perspectives and needs of community-based hospice nurses who provide care to children with serious illness and their families at the end of the life 3. Characterize and explain how to implement a spoke-and-hub model for providing hospice nurses with pediatric-specific training, support, and solidarity Approximately 500,000 children in the United States suffer from serious illness, of whom 10% die annually. Optimal provision of hospice services can lessen symptom burden and improve quality of life, reduce parental psychosocial stress, decrease costs, and limit clinician distress. Nonetheless, only 1 in 10 dying children receive hospice care, usually through adult organizations, and few community hospice nurses receive pediatric-specific training, resources, and support. In this concurrent session, interdisciplinary pediatric palliative care physicians and advance practice providers will partner with community-based hospice nurses to propose a resource-efficient, comprehensive intervention to address this challenge. First, they will review existing research findings, including a mixed-methods survey study of >550 hospice nurses across 71 hospice agencies that offer care to children in the tristate region of Tennessee, Arkansas, and Mississippi, and an interview-based, qualitative study of 41 of hospice nurses representing various levels of self-reported comfort with caring for children at the end of life (eg, very comfortable, somewhat comfortable, somewhat uncomfortable, very uncomfortable). The survey study found that nearly 90% of nurses had no pediatric palliative care training, 50% had no pediatric hospice experience, those with exposure described limited training (eg, online module, 2-day course), and few had opportunities to build skills. Both the survey and interviews revealed that nurses reported overwhelming discomfort with pediatric-specific care, clearly articulated gaps in training and support, and expressed a strong desire for further pediatric-specific education, resources, and support. Next, presenters will propose a spoke-and-hub model driven by community hospice nurses’ insights and recommendations, in which pediatric academic centers partner with community hospices to bring clinicians together regularly to carry out didactic learning, foster a sense of community and solidarity, help nurses network with colleagues, and reinforce access to colleagues and experts who can offer guidance in real time.
Porter A; Aglio T; Williams K; Baker JN; Kaye EC
Journal of Pain and Symptom Management
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.jpainsymman.2022.02.249" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.249</a>
Nursing Care at End of Life in Pediatric Intensive Care Unit Patients Requiring Mechanical Ventilation
Acute Disease; Child; Death; Humans; Intensive Care Units Pediatric; Neoplasms; Pain; Respiration Artificial
BACKGROUND: Parents' perceptions of critical care during the final days of their child's life shape their grief for decades. Little is known about nursing care needs of children actively dying in the pediatric intensive care unit (PICU). OBJECTIVES: To examine associations between patient characteristics, circumstances of death, and nursing care requirements for children who died in the PICU. METHODS: A secondary analysis of the data set from the Randomized Evaluation of Sedation Titration for Respiratory Failure trial was conducted. RESULTS: This analysis included 104 children; 67 died after withdrawal of life-sustaining treatments; 21, after failed resuscitation; and 16, after brain death. Patients had a median age of 7.5 years, were cognitively appropriate, and were intubated for acute respiratory failure. Daily pain and sedation scores indicated patients' comfort was well managed (mean pain scores: modal, 0; peak, 2; mean sedation scores: modal, -2; peak, -1). Patients with longer PICU stays more often experienced pain and agitation on the day of death. Illness trajectory (acute, complex chronic condition, or cancer) was associated with pain scores (P = .04). Specifically, children with cancer had higher pain scores than children with acute illness trajectories (P = .01). Many patients (62%) had no change in critical care devices in their last days of life (median, 5 devices). Patterns of pain, sedation, comfort medications, and nursing care requirements did not differ by circumstances of death. CONCLUSION: Children with cancer and longer PICU stays may need comprehensive comfort management. Invasive devices left in place during withdrawal of life support may have inhibited parents' ability to connect with their child. Future research should incorporate parents' perspectives.
Broden EG; Hinds PS; Werner-Lin A; Quinn R; Asaro LA; Curley MAQ
American Journal of Critical Care
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/10.4037/ajcc2022294" target="_blank" rel="noreferrer noopener">10.4037/ajcc2022294</a>
Palliative sedation for children at end of life: a retrospective cohort study
Terminal Care; Child; Children; Death; End of life; Humans; Hypnotics and Sedatives/therapeutic use; Pain; Palliative care; Palliative Care; Palliative sedation; Retrospective Studies; Symptom control
BACKGROUND: Palliative sedation is consciously reducing the patient's consciousness to alleviate the refractory symptoms. However, studies on palliative sedation for children are scarce. We aimed to survey the symptom control and risks for children with sedative therapy in end of life. METHOD: This study was a single center retrospective cohort study. Children who died in the Department of Palliative Medicine were divided into palliative sedation (Group A) and non-palliative sedation group (Group B). The symptoms relief, survival time, and last hospitalization time were compared between two groups. RESULTS: From January 2012 to November 2019, 41 children died in department of palliative care. 24 children were sedated (Group A), meanwhile 17 children were not (Group B). The symptoms in Group A were more complex than Group B (p = 0.013). Overall symptom relief in Group A was higher than that in Group B (24/24, 10/15 p = 0.041). Pain relief rates (7/7, 20/21 p = 0.714), maximum/pre-death opioid dose [30(20, 77.5), 18(9, 45) p = 0.175, 30(20, 60), 18(9, 45) p = 0.208] and pain intensity difference [5(4,6.5), 4(2,6) p = 0.315] did not differ significantly in either groups. After diagnosis, the survival time of the Group A was longer than the Group B (p = 0.047). However, the length of hospitalization before death was similar in two groups (p = 0.385). CONCLUSION: Palliative sedation controls complicated, painful symptoms at the end of life and does not shorten the hospitalization time in children.
Chen Y; Jiang J; Peng W; Zhang C
BMC Palliative Care
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/10.1186/s12904-022-00947-y" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00947-y</a>
Parents experience of using "cold" facilities at a children's hospice after the death of their baby: A qualitative study
children; Cold cot; death; hospice; parent experience; qualitative study
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three fathers). Our thematic analysis identified six themes: being able to care for my baby in a way that I never had, space and time to adjust to the loss, time as a family, having my baby close, creating memories, and awareness of societal perceptions. The authors conclude that these facilities provided memories, strengthened legacy, and were a valuable experience.
Norton EA; Mastroyannopoulou K; Rushworth I
Death Studies
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/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1836070</a>
Trends in length of stay for Neonatal Intensive Care Unit patients who die before hospital discharge
death; ethics; neonate; NICU; palliative care
OBJECTIVES: The objectives of this study were to establish days between birth and death for neonates over a 14-year period, determine if days between birth and death have changed over time across gestational age cohorts, and identify diagnoses which may put infants at high risk of prolonged hospitalization leading to death. STUDY DESIGN: This was a single-site, retrospective chart review of inborn infants who died prior to hospital discharge. RESULTS: Two hundred and thirty-nine patients born between 1/1/2006 and 12/31/2020 met inclusion criteria. Days until death ranged from 0 to 300 with a median of 6 days (interquartile range = 23). Median days until death increased over time, with a statistically significant increase between epoch 1 and epoch 2 (p = 0.016) but not between epoch 2 and epoch 3 (p = 0.618). Extremely premature infants died earlier than more mature infants (p < 0.001). In addition, infants with complex congenital heart disease or a gastrointestinal (GI) catastrophe died later (p < 0.001 and p < 0.001, respectively) than newborns without cardiac or GI issues. CONCLUSIONS: Our findings demonstrate an increase in time to death for newborns who did not survive to hospital discharge over a 14-year period. This trend suggests that the dynamics informing Meadows' assertion that "doomed infants die early" may be shifting, with some seriously ill infants who die before hospital discharge surviving longer than previously described. More research is needed to understand how best to care for babies who will not survive to discharge and to explore when supports such as palliative care consultation may be beneficial. KEY POINTS: As per W. Meadow, "Doomed infants die early" · Pre-death length of stay varies with diagnosis.. · Some seriously ill infants who die before hospital discharge are no longer dying early.. · These infants and families may need supports..
Guttmann K; Puoplo N; Richter F; Weintraub AS
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/a-1712-5313" target="_blank" rel="noreferrer noopener">10.1055/a-1712-5313</a>
Neonatal donation: are newborns too young to be recognized?
Infant; Retrospective Studies; Newborn Infant; End-of-life care; Tissue and Organ Procurement; Brain Death; Tissue Donors; Pediatric; Organ donation; Neonatal; Death; Tissue donation
Neonatal organ and tissue donation is not common practice in the Netherlands. At the same time, there is a transplant waiting list for small size-matched organs and tissues. Multiple factors may contribute to low neonatal donation rates, including a lack of awareness of this option. This study provides insight into potential neonatal organ and tissue donors and reports on how many donors were actually reported to the procurement organization. We performed a retrospective analysis of the mortality database and medical records of two largest neonatal intensive care units (NICUs) in the Netherlands. This study reviewed records of neonates with a gestational age >37 weeks and weight >3000g who died in the period from January 1, 2005 through December 31, 2016. During the study period, 259 term-born neonates died in the two NICUs. In total, 132 neonates with general contra-indications for donation were excluded. The medical records of 127 neonates were examined for donation suitability. We identified five neonates with documented brain death who were not recognized as potential organ and/or tissue donors. Of the remaining neonates, 27 were found suitable for tissue donation. One potential tissue donor had been reported to the procurement organization. In three cases, the possibility of donation was brought up by parents.Conclusion: A low proportion (2%) of neonates who died in the NICUs were found suitable for organ donation, and a higher proportion (12%) were found suitable for tissue donation. We suggest that increased awareness concerning the possibility of neonatal donation would likely increase the identification of potential neonatal donors. What is Known: • There is an urgent need for very small organs and tissues from neonatal donors What is New: • A number of neonates who died in the NICU were suitable organ or/and tissue donors but were not recognized as donors. • Knowledge on neonatal donation possibilities is also important for proper counseling of parents who sometimes inquire for the possibility of organ and tissue donation.
Vileito A; Hulzebos CV; Toet MC; Baptist DH; Verhagen EAA; Siebelink MJ
European Journal of 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/10.1007/s00431-021-04139-3" target="_blank" rel="noreferrer noopener">10.1007/s00431-021-04139-3</a>
Moving and Handling Children After Death: An Inductive Thematic Analysis of the Factors That Influence Decision Making by Children's Hospice Staff
pediatric; palliative care; death; nursing; family-centered care; evidence-based practice; moving and lifting patients; professional education
Hospices for children and adolescents in the United Kingdom provide care to the bodies of deceased children in specially designed chilled bedrooms called "cool rooms." In an effort to develop resources to support hospice practitioners to provide this specialist area of care, this study aimed to identify the factors that influence decision making when moving and handling children's bodies after death in a hospice cool bedroom. An internet-based survey was sent to all practitioners employed by 1 children's hospice. A total of 94.9% of eligible staff responded (n = 56). An inductive approach to thematic analysis was undertaken, using a 6-phase methodological framework. Three core themes were identified that inform practitioners' perception of the appropriateness of moving and handling decisions: care of the body, stages of care, and method of handling. The complexity of decision making and variation in practice was identified. Practitioners relied on both analytical and initiative decision making, with more experienced practitioners using an intuitive approach. Evidence-based policy and training influence the perception of appropriateness and the decisions and behavior of practitioners. The development of a policy and education framework would support practitioners in caring for children's bodies after death, standardizing expectations and measures of competence in relation to moving and handling tasks.
Tatterton MJ; Honour A; Kirkby L; Billington D
Journal of Hospice & Palliative Nursing
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/10.1097/njh.0000000000000823" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000823</a>
Attitudes and Experiences Towards Death of Healthcare Professionals Working in Neonatal Intensive Care Units
death; neonatal intensive care units; experiences; healthcare professionals; attitudes
BACKGROUND: Death is an integral part of neonatal intensive care units' (NICUs) environment and little it is known about NICU's staff death concepts. AIM: To investigate attitudes and experiences towards death of healthcare professionals (HPs) working in NICUs. DESIGN: Totally 131 participants from six hospitals were included in the study. Research instruments were a questionnaire designed by the authors and the scale Death Attitude Profile-Revised. RESULTS: Gender, marital and educational status, frequent contact with end of life neonates and provision of neonatal end of life care during the research period correlated significantly with dimensions of DAP-R. Impact of NICU neonatal deaths on personal life correlated negatively with fear of death and positively with escape acceptance. CONCLUSION: Evaluating the interrelationships among personal characteristics, attitudes and experiences towards death among NICU HPs may increase our understanding concerning working with dying neonates and provide direction for educational intervention and continuing professional support.
Metallinou D; Bardo S; Kitsonidou I; Sotiropoulou N
Omega
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/10.1177/00302228211048667" target="_blank" rel="noreferrer noopener">10.1177/00302228211048667</a>
Parental bereavement - impact of death of neonates and children under 12 years on personhood of parents: a systematic scoping review
Infant; Bereavement; Parents; End of life; Personhood; Paediatrics; Palliative care; Death; Neonate; Ring theory of personhood
BACKGROUND: Losing a child tragically impacts the well-being and functioning of parents. With these effects extending beyond emotional, physical morbidity and compromising self-perceptions, appropriate, longitudinal, timely and personalised support is key to effective care of bereaved parents. However, in the absence of a comprehensive understanding of parental bereavement, effective support of bereaved parents remains suboptimal. To address this gap, we scrutinise prevailing data on the effects of a child's death, aged 0-12 years, through the lens of the Ring Theory of Personhood (RToP). METHODS: To study prevailing accounts of bereaved parents following the death of a child, we adopt Krishna's Systematic Evidence Based Approach (SEBA) to structure our Systematic Scoping Review (SSR in SEBA). RESULTS: Three thousand seventy-four abstracts were reviewed, 160 full text articles were evaluated, and 111 articles were included and analysed using thematic and content analysis. Four themes/categories were identified relating to the four rings of the RToP. Findings reveal that static concepts of protective and risk factors for grief are misplaced and that the support of healthcare professionals is key to assisting bereaved parents. CONCLUSION: In the absence of consistent support of bereaved parents, this study highlights the need for effective training of healthcare professionals, beginning with an appreciation that every aspect of an individual parent's personhood is impacted by the loss of their child. Acknowledging grief as a complex, evolving and personalised process subjected to parental characteristics, settings, context and available support, this SSR in SEBA calls attention to effective nurturing of the relationship between parents and healthcare professionals, and suggests use of the RToP to assess and direct personalised, timely, specific support of parents in evolving conditions. We believe the findings of this review also call for further studies to support healthcare professionals as they journey with bereaved parents.
Vig PS; Lim JY; Lee RWL; Huang H; Tan XH; Lim WQ; Lim MBXY; Lee ASI; Chiam M; Lim C; Baral VR; Krishna LKR
BMC 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/10.1186/s12904-021-00831-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-021-00831-1</a>
A good death in the child with life shortening illness: A qualitative multiple-case study
Child; terminal care; palliative care; death; delivery of health care; caregivers; qualitative research
BACKGROUND: Understanding what makes a 'good death' in the child with life shortening illness is important, as it informs appropriate and effective end-of-life care. Above play, peer contact and opportunities for assent, prior literature review found meeting needs and managing control were critical. The influence of disease types, location of death and palliative care support remains unclear. AIM: Explore how a good death for children can occur in the real-world context and identify factors influencing it. DESIGN: A qualitative multiple-case study. The case was defined as family and professional caregivers of children who died, stratified across disease categories (cancer or non-cancer) and palliative care contact. Data collection included (1) interviews, (2) artefacts, (3) clinical notes. Framework Analysis facilitated in-depth within and cross-case analysis. SETTING/PARTICIPANTS: Singapore health-care context. Respondents included bereaved parents, health and social care providers from hospital, and a community palliative care service. RESULTS: Five cases were constituted, with eight parents and 14 professionals as respondents. Eight common themes were identified, sub-categorised under three domains and interpreted theoretically: (1) Antecedents: Letting go, Acknowledging the child, Closure (2) Determinants: Suffering, Control, Systems and processes (3) Attributes: Comfort, Dying not prolonged. These factors were consistent across all cases, regardless of individual diagnoses, place of care and palliative care access. CONCLUSIONS: Elements that universally influence a good death are revealed within an ecologically sound and holistic conceptual framework. The impact of attitudes among healthcare professionals, and service delivery at systems level highlighted in this study have immediate applications in practice and policy.
Chong PH; Walshe C; Hughes S
Palliative Medicine
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/10.1177/02692163211027700" target="_blank" rel="noreferrer noopener">10.1177/02692163211027700</a>
A Framework for Pediatric Intensivists Providing Compassionate Extubation at Home
child; death; empathy; airway extubation; intensive care units pediatric
For families facing end-of-life decisions for their critically ill children, compassionate extubation at home is a valuable service that pediatric intensivists can provide. Compassionate extubation at home is resource intensive and can be logistically challenging. Discouragingly, guidance on compassionate extubation at home in the literature is limited. We developed an evidence- and experience-based framework for compassionate extubation at home addressing common planning challenges and resource management. Our objective is to share this framework and an accompanying checklist, so that pediatric intensivists in other institutions can adapt these tools for their use, reducing barriers to providing compassionate extubation at home for critically ill children at the end of life. Copyright © 2021 Lippincott Williams and Wilkins. All rights reserved.
Woodruff AG; Bingham SB; Jarrah RJ; Bass AL; Nageswaran S
Pediatric Critical Care Medicine
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/10.1097/PCC.0000000000002655" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002655</a>
Neonatologists and neonatal nurses have positive attitudes towards perinatal end-of-life decisions, a nationwide survey
Surveys and Questionnaires; Newborn Infant; Pregnancy; Attitude of Health Personnel; Decision Making; Belgium; Terminal Care; Perinatal death; End-of-life decisions; Death; Termination of pregnancy; Neonatologists; Optimism; Attitude questionnaire; Attitudes of neonatologists and neonatal nurses; Neonatal Nurses
AIM: Perinatal death is often preceded by an end-of-life decision (ELD). Disparate hospital policies, complex legal frameworks and ethically difficult cases make attitudes important. This study investigated attitudes of neonatologists and nurses towards perinatal ELDs. METHODS: A survey was handed out to all neonatologists and neonatal nurses in all eight neonatal intensive care units in Flanders, Belgium in May 2017. Respondents indicated agreement with statements regarding perinatal ELDs on a Likert-scale and sent back questionnaires via mail. RESULTS: The response rate was 49.5% (302/610). Most neonatologists and nurses found nontreatment decisions such as withholding or withdrawing treatment acceptable (90-100%). Termination of pregnancy when the foetus is viable in cases of severe or lethal foetal problems was considered highly acceptable in both groups (80-98%). Physicians and nurses do not find different ELDs equally acceptable, e.g. nurses more often than physicians (74% vs 60%, p = 0.017) agree that it is acceptable in certain cases to administer medication with the explicit intention of hastening death. CONCLUSION: There was considerable support for both prenatal and neonatal ELDs, even for decisions that currently fall outside the Belgian legal framework. Differences between neonatologists' and nurses' attitudes indicate that both opinions should be heard during ELD-making.
Dombrecht L; Deliens L; Chambaere K; Baes S; Cools F; Goossens L; Naulaers G; Roets E; Piette V; Cohen J; Beernaert K
Acta Paediatrica
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/10.1111/apa.14797" target="_blank" rel="noreferrer noopener">10.1111/apa.14797</a>
Current Grief Support in Pediatric Palliative Care
bereavement; death; grief; hospice; hospital; palliative; pediatric; programing; support; thanatology
Grief support changes as more is learned from current grief theory and research. The authors provide a comprehensive overview of current grief support as it relates to Pediatric Palliative Care (PPC). The following aspects of grief are addressed: (1) anticipatory grief: the nondeath losses that occur with a complex and chronic illness, as well as the time leading up to death; (2) grief around the time of death: the intense and sacred experience of companioning with a dying child; (3) grief after death: supporting bereavement and mourning through programing and other methods; (4) innovative approaches: the future of grief support. The contents of this article are meant to support and educate programs currently providing grief services and those aiming to begin the meaningful work of grief support.
Schuelke T; Crawford C; Kentor R; Eppelheimer H; Chipriano C; Springmeyer K; Shukraft A; Hill M
Children
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/10.3390/children8040278" target="_blank" rel="noreferrer noopener">10.3390/children8040278</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>
Parents experience of using "cold" facilities at a children's hospice after the death of their baby: A qualitative study
Cold cot; death; hospice; qualitative study
There is a growing movement in children's hospice care to offer families time with their baby after death through use of a "cold cot"; however, there is very limited research in this area. We interviewed seven parents (four mothers and three fathers). Our thematic analysis identified six themes: being able to care for my baby in a way that I never had, space and time to adjust to the loss, time as a family, having my baby close, creating memories, and awareness of societal perceptions. The authors conclude that these facilities provided memories, strengthened legacy, and were a valuable experience.
Norton EA; Mastroyannopoulou K; Rushworth I
Death Studies
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/10.1080/07481187.2020.1836070" target="_blank" rel="noreferrer noopener">10.1080/07481187.2020.1836070</a>
"This is the worst that has happened to me in 86 years": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
bereavement; child; death; grandparents; pediatric palliative care
Purpose: Pediatric palliative care focuses mainly on the children suffering from a life-limiting disease, but always includes parents and siblings. However, grandparents are also often highly involved in caring for the child and require additional attention. Therefore, the aim of this study was to investigate the experiences of grandparents during the end-of-life care and after the death of a grandchild. Design and Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of 10 children who had died of neurological or oncological diseases were interviewed. Participants were recruited among the families cared by the pediatric palliative care team of a children's hospital in northern Switzerland. Grandparents were interviewed at least 1 year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Result(s): Regardless of the child's diagnosis and circumstances of death, the participants described how the child's death had a major impact on them and their entire family. Grandparents felt obligated to support the family and constantly be a source of support for the parents. They bore a heavy psychological burden as they cared and mourned not only for their dying grandchild but also for their own daughter or son. Grandparents struggled with their ability to communicate about disease and death. They tried to process and make sense of their loss by remembering the deceased child. Practice Implications: These findings emphasize the importance of identifying and understanding grandparents' suffering. Pediatric palliative care teams can achieve this by actively making contact with grandparents, taking their concerns seriously and demonstrating appreciation for their role in supporting the family. Copyright © 2020 Wiley Periodicals LLC
Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Journal for Specialists in Pediatric 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/10.1111/jspn.12311" target="_blank" rel="noreferrer noopener">10.1111/jspn.12311</a>
Experiences of new nurses dealing with death in a paediatric setting: A descriptive qualitative study
death; experiences; novice nurse; nurses; paediatric
AIMS: To explore and describe the experiences, challenges and coping strategies of new nurses dealing with paediatric death in a clinical setting. DESIGN: A descriptive qualitative study design was used. METHODS: Semi-structured interviews were conducted to explore the experiences of 12 new paediatric nurses from a tertiary public hospital in Singapore. Data were collected from September 2019-December 2019. A thematic analysis was performed for data analysis. RESULTS: Four themes were generated: (a) a spectrum of emotions; (b) the 'blame' game; (c) getting through the grief; and (d) new nurses' wish list. The new nurses tended to be emotionally affected by their first death experience. They felt anxious and personally responsible for the death but eventually controlled their emotions. Colleagues, religion and self-actualization were key in overcoming grief. CONCLUSION: The experiences nurses go through at the early stages of their profession shape future workplace attitudes. Additional training and support should be provided to new nurses to build their confidence in managing end-of-life care. Training should include cultural awareness and communication skills to equip nurses with the necessary skills. IMPACT: This research will have an impact on institutions, which develop culturally congruent training and support platforms that prepare new nurses for nursing practice. This research will drive future investigations on the long-term effects of paediatric death on new nurses.
Chew YJM; Ang SLL; Shorey S
Journal of Advanced 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/10.1111/jan.14602" target="_blank" rel="noreferrer noopener">10.1111/jan.14602</a>
National Children's Hospitals Bereavement Network standards for supporting families following the death of a child
bereavement; bereavement support; child health; clinical; death; end-of-life care; grief; parents
In England, a child death review process must be undertaken when a child dies, regardless of the cause of death. Scotland and Wales have their own version of the child death review process, while it is the author's understanding that Northern Ireland are still developing their process. An important aspect of this process is family engagement and bereavement support. This article is an introduction to the bereavement support standards developed by the National Children's Hospitals Bereavement Network, a newly formed group of specialist children's nurses and allied health professionals interested in bereavement care. These standards translate the statutory requirements into practical guidance for healthcare professionals working in children's hospitals in the UK or district general hospitals that offer services for children and families. They also apply to NHS trusts that care for children and need to develop a local policy and workforce with the appropriate skills to provide bereavement care, thereby improving the experiences of families and healthcare professionals. The standards would also be applicable to other NHS trusts and healthcare services in the UK who want to develop an approach to bereavement care and support for families. Copyright © 2020 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers.
Edwards F
Nursing children and young people
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/10.7748/ncyp.2020.e1336" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2020.e1336</a>
Factors Associated With the Location of Expected Pediatric Deaths in the Palliative Care Context
child; death; end-of-life; location of death; planning
Early planning and knowing which factors to consider when planning the location of death (LOD) of a palliative child, may help minimize the burden of hasty decision-making in the future, and may provide families with a sense of control. The current paper reviewed which factors were associated with pediatric LOD and further considered some emerging factors that should are important to better facilitate integrative planning. Three overarching areas of consideration related to pediatric LOD planning were identified including health service factors, familial factors and patient factors. Multiple sub-factor considerations are presented. Further, the paper presents a conceptual model of the factors found to be related to pediatric LOD planning. The limitations that exist with rigorously and empirically studying pediatric LOD preferences are apparent from the dearth of knowledge seen in the field. However, future studies should continue to examine such factors more closely to better understand the nuanced implications.
Coombs S; Aouad P; Jaaniste T
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/10.1177/0030222820959941" target="_blank" rel="noreferrer noopener">10.1177/0030222820959941</a>
Bereavement care interventions for children under the age of 18 following the death of a sibling: a systematic review
Bereavement; child; death; paediatrics; review; siblings
BACKGROUND: Childhood bereavement after sibling death is common, but often unrecognized. The psychosomatic and socioeconomic outcomes of bereaved children can be compromised if appropriate care is unavailable during the formative years leading into adulthood. AIM: This review aims to describe the methods, structures and procedures of bereavement care for children and adolescents after the loss of a sibling, and the impact on the families benefiting from these interventions. DESIGN: A systematic review without restriction on study design was conducted. DATA SOURCES: Four databases (MEDLINE, PsycINFO, EMBASE, Cochrane Library) were searched for articles published from 2000 to 2019. The search was conducted according to PRISMA guidelines and the protocol is registered on PROSPERO under number CRD42019124675. Articles were assessed against eligibility criteria by both authors, and quality was appraised using CASP checklists and NHMRC grading guidelines. RESULTS: Twenty-three studies met inclusion criteria. Bereavement care was most often accessed by children ages 6-18 who lost a sibling to cancer 6-12 months prior. The interventions were typically group sessions or weekend camps, run predominantly by unpaid staff from a variety of backgrounds. Some staff members received priori specific training. Grief education is taught through mediated discussion and bereavement-centered activities balanced with playful and relaxed activities. Several services have effectuated evaluations of their interventions, and preliminary results show a positive effect for families. CONCLUSION: Existing literature most likely gives an incomplete picture of appropriate childhood bereavement care, and many interventions possibly remain unpublished or published in other non-scientific sources. An effective response to childhood grief would involve collaboration between medical resources and community services, reinforced through the development of outreach and training programs.
Ridley A; Frache S
Palliative 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/10.1177/0269216320947951" target="_blank" rel="noreferrer noopener">10.1177/0269216320947951</a>
Analysis of how nurses cope facing the death of a paediatric patient
Afrontamiento; Coping; Death; Enfermera; Muerte; Nurse; Paciente; Paediatrics; Patient; Pediatría
AIMS: To evaluate how nurses cope with the death of a paediatric patient, relate it to the different sociodemographic variables, and to describe personal coping strategies used by nurses in managing the process and accepting the death of the patient. METHODOLOGY: an observational, descriptive and cross-sectional study, carried out from January to June 2018 with nurses from the palliative care area, intensive care unit, neonatology and oncohaematology area of a tertiary paediatric hospital in Barcelona city. An ad hoc questionnaire was applied, divided into three parts: socio-demographic data, the Bugen scale of coping with death and two open questions. RESULTS: 31.37% of the respondents faced the process of death of the paediatric patient adequately, while 33.33% did not cope well. The best coping was in paediatric palliative care, followed by paediatric oncohaematology, neonatology and, finally, the intensive care unit. In addition, the variables related to this coping are the work shift, the death of a loved one in less than 3 years and previous training. On the other hand, the age of the respondents, experience in the unit and having children are not related to coping. Moreover, the professionals surveyed demand more training to improve their coping in this area, as well as interdisciplinary sessions to discuss cases of deceased patients.
Lledó-Morera À; Bosch-Alcaraz A
Enfermeria Intensiva
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.enfi.2020.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.enfi.2020.03.004</a>
Compassionate Design: Utilizing Design Thinking to Preserve Sanctity, Dignity, and Personhood When Children Die
compassionate design; death; design thinking; pediatrics
INTRODUCTION: Greater than 70% of children who die in our institution annually die in an intensive care unit (ICU) setting. Family privacy, visitation policies, and an inability to perform religious rituals in the ICU are barriers to provide children with culturally competent, family-centered care when a child dies. The goal of this project was to profoundly understand family and staff experiences surrounding pediatric death in our institution to identify unique opportunities to design improved, novel delivery models of pediatric end of life (EOL) care. METHODS: This project utilized a structured process model based on the Vogel and Cagan's 4-phase integrated new product development process model. The 4 phases are identifying, understanding, conceptualizing, and realizing. We utilized an adaptation of this process model that relies on human-centered and design thinking methodologies in 3 phases: research, ideation, and refinement of a process or product opportunity. RESULTS: There were 2 primary results of this project: 5 process and opportunity areas to improve the EOL experience across the hospital, and a set of criteria and considerations for a dedicated EOL space. DISCUSSION: Sometimes, the best outcome we can provide for a child and their family is a peaceful, dignified death. This project utilized human-centered design to create improved process outcomes and to design a dedicated EOL space for children who die in the hospital. Offering grieving families quiet, private time with their child in a beautiful, dignified, peaceful location enables the beginning of improved bereavement outcomes for the family and staff.
Grossoehme D H; Mark M S; Lane B; Rednour A; Thienprayoon R
Pediatric Quality and Safety
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/pq9.0000000000000317" target="_blank" rel="noreferrer noopener">10.1097/pq9.0000000000000317</a>
A Time to Live and a Time to Die: Heterotopian Spatialities and Temporalities in a Pediatric Palliative Care Team
Anthropology; Attitude to Death; child; communication; death; humans; palliative care; Parents/psychology; patient care team; pediatric hospitals; pediatrics; spatial analysis; time factors; uncertainty
The death of a child creates especially poignant feelings and extreme stress, distress, and devastation for family members and healthcare providers. In addition, serious or long-term illness forces a reconstruction of our experiences with time and space. In this paper, we report on a long-term ethnographic study of a Pediatric Palliative Care Team (PPCT). Using the concepts of spatiality and temporality; Deleuze's concepts of smooth and striated spaces; Innis's concepts of space and time biases; Foucault's concept of heterotopian space-places with multiple layers of meaning; and a related concept of heterokairoi-moments in time with multiple possibilities-we consider how the PPCT constructs and reconstructs meaning in the midst of chaos, ethical dilemmas, and heartbreaking choices.
Davis C S; Snider M J; King L; Shukraft A; Sonda J D; Hicks L; Irvin L
Health Communication
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/10.1080/10410236.2018.1443262" target="_blank" rel="noreferrer noopener">10.1080/10410236.2018.1443262</a>
How Do Children Die in PICUs Nowadays? A Multicenter Study From Spain
brain dead; chronic disease; critically ill; death; neuromuscular disease; pediatric intensive care unit; PICU; respiratory disease
OBJECTIVES: To describe how children currently die in Spanish PICUs, their epidemiologic characteristics and clinical diagnoses. DESIGN: Prospective multicenter observational study. SETTING: Eighteen PICUs participating in the MOdos de Morir en UCI Pediatrica-2 (MOMUCI-2) study in Spain. PATIENTS: Children 1 to 16 years old who died in PICU during 2017 and 2018.None. MEASUREMENTS AND MAIN RESULTS: During the 2-year study period, 250 deaths were recorded. Seventy-three children (29.3%) were younger than 1 year, 131 (52.6%) were between 1 and 12 years old, and 45 (18.1%) were older than 12. One-hundred eighty patients (72%) suffered from an underlying chronic disease, 54 (21.6%) had been admitted to PICU in the past 6 months, and 71 (28.4%) were severely disabled upon admission. Deaths occurred more frequently on the afternoon-night shift (62%) after a median PICU length of stay of 3 days (1-12 d). Nearly half of the patients died (48.8%) after life-sustaining treatment limitation, 71 died (28.4%) despite receiving life-sustaining therapies and cardiopulmonary resuscitation, and 57 (22.8%) were declared brain dead. The most frequent type of life-sustaining treatment limitation was the withdrawal of mechanical ventilation (20.8%), followed by noninitiation of cardiopulmonary resuscitation (18%) and withdrawal of vasoactive drugs (13.7%). Life-sustaining treatment limitation was significantly more frequent in patients with an underlying neurologic-neuromuscular disease, respiratory disease as the cause of admission, a previous admission to PICU in the past 6 months, and severe disability. Multivariate analyses indicated that life-sustaining treatment limitation, chronicity, and poor Pediatric Cerebral Performance Category score were closely related. CONCLUSION(S): Currently, nearly half of the deaths in Spanish PICUs occur after the withdrawal of life-sustaining treatments. These children are more likely to have had previous admissions to the PICU, be severely disabled or to suffer from chronic diseases. Healthcare professionals who treat critically ill children ought to be aware of this situation and should therefore be prepared and trained to provide the best end-of-life care possible.
Agra-Tunas C; Rodriguez-Ruiz E; Rodriguez Merino E
Pediatric Critical Care 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/10.1097/PCC.0000000000002359" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000002359</a>
Considering medical assistance in dying for minors: the complexities of children's voices
children; death; euthanasia; law
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.
Singh H K; Macdonald M E; Carnevale F A
Journal of Medical Ethics
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/medethics-2019-105762" target="_blank" rel="noreferrer noopener">10.1136/medethics-2019-105762</a>
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Adult; Bereavement; Child; child and family wishes; Critical Illness -- Singapore; Death; Female; Grounded theory; Grounded Theory; health personnel attitude; Hospital Mortality; Hospitalized; Humans; Intensive care unit-paediatric; Intensive care units pediatric; Interviews as Topic; Male; Nurse; Parents; Parents/*psychology; Pediatric; Professional-Family Relations; Victoria
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.
Butler A E; Copnell B; Hall H
Australian Critical Care
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.aucc.2017.09.004" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2017.09.004</a>
Trends in the aggressiveness of pediatric cancer near the end-of-life
adult; aggressiveness; artificial ventilation; cancer patient; child; Childhood cancer; conference abstract; controlled study; death; diagnosis; female; hematologic malignancy; human; intubation; Japan; major clinical study; male; resuscitation; school child; terminal care; young adult
Backgrounds: Many adult patients with cancer who knowthey are dying choose less intense care. High intensity careis associated with worse caregiver outcomes. Little is knownabout intensity of treatment of end-of-life care in children withcancer in Japan.
Yotani N; Shinjo D; Fushimi K; Matsumoto K
Pediatric Blood and Cancer
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/10.1002/pbc.27514" target="_blank" rel="noreferrer noopener">10.1002/pbc.27514</a>
Vulnerable Populations Receiving Palliative Radiation in a Children's Hospital: Reporting on the Underreported
adult; anesthesia; Asia; cancer radiotherapy; central nervous system tumor; child; conference abstract; controlled study; death; electronic medical record; employer; female; follow up; fraud; housing; human; immigration; lowest income group; major clinical study; male; medical record review; mental stress; neuroblastoma; organization; pain; poverty; race; radiation oncologist; radiotherapy; retrospective study; rhabdomyosarcoma; school child; South and Central America; terminal care; vulnerable population; young adult
Purpose/Objective(s): Few studies have examined the use of palliative radiation therapy (RT) in the pediatric population. This single institution study is one of the largest series reported of palliative RT practice patterns prior to and within the last month of life with a focus on vulnerable and underserved pediatric patients. Materials/Methods: A retrospective chart review of patients treated from 2008-2017 identified patients treated with radiotherapy with palliative intent. Demographic, diagnosis, and treatment parameters were collected from the electronic medical records. Vital status was recorded at date of death or last follow-up. Vulnerable patients were defined as belonging to a minority, adolescent and young adult (AYA), special needs, or low income population. Result(s): Of the 1092 patients treated with RT, 108 were identified as having received 227 treatments with palliative intent. Forty-five patients (42%) were female and 63 (58%) were male. The median age at the time of the first course of radiation was 11 years (range 0-25). Central nervous system (CNS) disturbance was the most common indication (n=50, 46%) followed by pain (n=44, 41%). Top primary diagnoses included CNS neoplasm (n=30, 37%), neuroblastoma (n=20, 19%), and rhabdomyosarcoma or other sarcoma (n=11, 10%). Forty-four percent were treated with anesthesia for at least one course of radiation. The median time from last course of RT to date of last follow-up was 3 months (range 0-105), and 25 patients (23%) received radiation in the last month of life. Eighty-two (76%) patients were deceased at time of review. The vulnerable constituted the overwhelming majority of the 108, only 13 (11.5%) were not. Patients were classified in the following individual categories: minority (n=90, 83.3%), AYA (n=34, 30%), special needs (n=10, 8.8%), or low income (n=70, 62%). Eight patients initially came seeking cancer treatment not available in Asia or Latin America. Latinos (n=66, 61%) were numerous and diverse, 12% were mixed race, and 18% had employer-based coverage. The most common vulnerable patients were Latin children from low income families (n=40, 35%). Obstacles to care included the immigration system, limited English, discrimination, cultural barriers, and poverty with job, transportation, and housing insecurity. Safety net and charitable organizations had scarce resources and rules intended to reduce fraud and abuse further limited access. Parents reported these challenges amplified the great psychological distress felt after the death of a child. Conclusion(s): This is the first report to document the vulnerable pediatric and AYA population receiving palliative radiation therapy at a large urban hospital. Almost a quarter of patients received treatment in the last month of life. Most commonly, a vulnerable child was Latinx from a low income family. Further investigation is needed to guide radiation oncologists on the delivery of optimal end-of-life care and address barriers to care in this population. Copyright © 2019
Wong K; Hwang L; Liu K X; Lee H J; Olch A J
International Journal of Radiation Oncology Biology Physics
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.ijrobp.2019.06.1497" target="_blank" rel="noreferrer noopener">10.1016/j.ijrobp.2019.06.1497</a>
Musicotherapy and narrative creations with an adolescent admitted to the pediatric hematology-oncology department
adolescent; appendix; article; child; death; hematology; hospitalized adolescent; human; identity; injury; male; music therapy; Music therapy mediation; narrative; Narrative identity; oncology; Palliative care; palliative therapy; sound; symbolism; Symbolization; Trauma
This groundbreaking study focuses on the link between music-therapy and narrativity in a pediatric hematology-oncology unit. The goal is to observe and analyse the psychic processes in this therapeutic mediation. We aim to study the creative processes through the narrative productions of a sick and hospitalized teenagers. The interest of this original work with regard to previous research is to focus on the internal mechanisms of the patient and his narrative identity rather than on the active ingredient and the therapeutic method itself or its effect on a particular symptom. Based on a clinical situation of a young man of 19 years followed in onco-hematology, authors show how the creation of a sound link and subsequent narration on this sound object can be used as a "cordage" for seriously ill adolescents to endure the trauma of announcing the disease and announcing an imminent promise of death. We wish to support the issues of therapeutic support in order to demonstrate their resources with which they can subjectively assume their traumatic and painful journey, in this very specific space-time. His text, reproduced in appendix, is the subject of a literary analysis then of a psychopathological discussion. Copyright © 2019 Elsevier Masson SAS
Viode C; Ledeuil E; Crinquand S; Lignier B
Neuropsychiatrie de l'Enfance et de l'Adolescence.
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.neurenf.2019.07.001" target="_blank" rel="noreferrer noopener">10.1016/j.neurenf.2019.07.001</a>
From hospitalization to grief: meanings parents assign to their relationships with pediatric oncology professional
bereavement; child; death; family nursing; hospitalization; hospitalized; neoplasm; Professional-Family Relations
OBJECTIVE: To understand the meanings assigned by bereaved parents to their relationships with healthcare professionals during the end-of-life hospitalization of their child. METHOD: Qualitative-interpretative study based on hermeneutics. Data were collected from interviews with parents who were grieving the death of a child with cancer in the hospital and participant observation in an oncology ward. Deductive thematic analysis for data interpretation ensued. RESULTS: The experience of parents is the sum of all relationships during treatment. Therefore, meanings form a tangle of interrelated senses built not only in the interaction with these professionals, but also with the child and with grief itself. In relationships with professionals, meanings related to the memories of the child, negative emotions and regret were identified. CONCLUSION: The experiences and meanings of grief are shaped by the social processes and interactions experienced by the family in the hospital. The relationship with the professionals represents part of the support in coping with the grief after the child's death in the hospital, due to the perpetuity of the love shown for the child as a possible legacy in the legitimacy of the experienced interactions.
Santos M R D; Wiegand D L; Sa N N; Misko M D; Szylit R
Revista da Escola de Enfermagem da USP
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/10.1590/s1980-220x2018049603521" target="_blank" rel="noreferrer noopener">10.1590/s1980-220x2018049603521</a>
Burden of treatment in the face of childhood cancer: A quantitative study using medical records of deceased children
Adaptation; Adolescent; burden of treatment; Central Nervous System Neoplasms/therapy; Child; Death; family; Female; Hospitalization; Humans; Infant; inpatient stays; Length of Stay; leukaemia; Leukemia/therapy; Male; Medical Records; Neoplasms/*therapy; Newborn; paediatric oncology; place of death; Preschool; Psychological; Retrospective Studies; Switzerland; Terminal Care
Lived experiences of childhood cancer patients and their families have been described as interrupted and as a loss of normal life. Apart from symptoms due to the cancer disease, families continuously experience burden of treatment. Since coping capacities are unique to each individual, we captured variables that offer objective measures of treatment burden, with a particular focus on the disruptive effects of treatment on families' lives. Our sample was comprised by 193 children that died of cancer. Medical records were extracted retrospectively. Quantitative data were statistically analysed with respect to variables related to treatment burden. Deceased children with cancer and their families faced a significant burden of treatment. Results revealed that deceased leukaemia patients had a higher number of inpatient stays, spent more time in the hospital both during their illness and during the last month of their life, and were more likely to die in the hospital when compared to deceased patients with CNS neoplasms and with other diagnoses. Our findings highlight the disruptive effects of treatment that are likely to have a great impact on families' daily life, that go beyond exclusively focusing on side effects, and that needs to be taken into account by the treating staff.
Rost M; Wangmo T; Rakic M; Acheson E; Rischewski J; Hengartner H; Kuhne T; Elger B S
European Journal of Cancer Care (Engl)
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/10.1111/ecc.12879" target="_blank" rel="noreferrer noopener">10.1111/ecc.12879</a>
Medication utilization for symptom management by pediatric inpatients with cancer at end-of-life
adult; anxiety; benzodiazepine; Black person; cancer patient; child; childhood cancer; conference abstract; controlled study; death; decision making; do not resuscitate order; drug therapy; ethnicity; female; gender; hospital patient; hospitalization; human; length of stay; major clinical study; male; manager; medicaid; multicenter study; nausea; opiate; pain; patient history of bone marrow transplantation; pediatric patient; recipient; retrospective study; solid malignant neoplasm; tumor diagnosis; university hospital; young adult
Background: Despite advances in pediatric oncology care, most children that die each year from cancer report significant suffering at end-of-life. Commonly reported symptoms include pain, anxiety, and nausea. More than half of pediatric cancer patients die in the hospital, yet little is known about medication use for symptom management during their terminal hospitalizations. Objective(s): To describe the utilization patterns of opiates, benzodiazepines, and gastrointestinal (GI) related medications for commonly reported symptoms by pediatric cancer inpatients during their last week of life. Design/Method: This retrospective study uses data from the Vizient clinical database/resource manager (CDB/RMTM), a compilation of clinical and resource use data from over 100 academic medical centers and their affiliates nationally. Pediatric patients (ages 0-21) with a diagnosis of malignancy who died during an inpatient hospitalization from 2010-2017 were included (n = 1,659). Patients admitted for less than 1 week were excluded. Individual medications were categorized as opiate, benzodiazepine, or GI-related. Exposure to each group was ascertained for all patients at two time points: one week and one day prior to death. Factors associated with the time of exposure were examined using generalized estimating equations. Results were summarized using adjusted odds ratios (aOR). Result(s): Opiate exposure increased from 76% one week prior to death to 82% one day prior (aOR 1.5; p<0.001). Similarly, use of benzodiazepines also increased from 53% to 66% (aOR 1.3; p = 0.024). Receipt of GI medications decreased from 92% to 89% (aOR 0.7; p = 0.001). Opiates and benzodiazepines were more likely to be administered to patients with solid tumor diagnosis (aOR 1.4, 1.2), history of bone marrow transplant (BMT) (aOR 1.3, 1.4), and longer length of stay (LOS), respectively. Benzodiazepine utilization was lower among blacks (aOR 0.6) and Medicaid recipients (aOR 0.8). GI medications were also more likely to be received by patientswith history ofBMT(aOR 1.8) and longer LOS; additionally, exposure was higher in those age 5-9 (aOR 1.9) and of Asian race (aOR 2.5). Reported aORs are significant at p<0.05. Gender, ethnicity, study year, location in ICU, and DNR status did not significantly affect exposure in any category. Conclusion(s): Not all patients are receiving medications typically used for symptom management in the week preceding death. Opiate and benzodiazepine exposure increased while GI medication use decreased. Earlier and more consistent intervention with these medications may reduce patient suffering. Furthermore, variability in utilization associated with patient characteristics suggests differences in symptomatology and provider/family decision-making warranting further study.
Prozora S; Shabanova V; Massaro S; Davidoff A
Pediatric Blood and Cancer
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
Predictors of Location of Death for Children with Cancer Enrolled on a Palliative Care Service
article.; Death; End of life; Female; Humans; Location of death; Male; Neoplasms/*mortality; palliative care; Palliative Care/*methods; palliative oncology; Pediatric oncology
BACKGROUND: In the U.S., more children die from cancer than from any other disease, and more than one third die in the hospital setting. These data have been replicated even in subpopulations of children with cancer enrolled on a palliative care service. Children with cancer who die in high-acuity inpatient settings often experience suffering at the end of life, with increased psychosocial morbidities seen in their bereaved parents. Strategies to preemptively identify children with cancer who are more likely to die in high-acuity inpatient settings have not been explored. MATERIALS AND METHODS: A standardized tool was used to gather demographic, disease, treatment, and end-of-life variables for 321 pediatric palliative oncology (PPO) patients treated at an academic pediatric cancer center who died between 2011 and 2015. Multinomial logistic regression was used to predict patient subgroups at increased risk for pediatric intensive care unit (PICU) death. RESULTS: Higher odds of dying in the PICU were found in patients with Hispanic ethnicity (odds ratio [OR], 4.02; p = .002), hematologic malignancy (OR, 7.42; p < .0001), history of hematopoietic stem cell transplant (OR, 4.52; p < .0001), total number of PICU hospitalizations (OR, 1.98; p < .0001), receipt of cancer-directed therapy during the last month of life (OR, 2.96; p = .002), and palliative care involvement occurring less than 30 days before death (OR, 4.7; p < .0001). Conversely, lower odds of dying in the PICU were found in patients with hospice involvement (OR, 0.02; p < .0001) and documentation of advance directives at the time of death (OR, 0.37; p = .033). CONCLUSION: Certain variables may predict PICU death for PPO patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families. IMPLICATIONS FOR PRACTICE: Children with cancer who die in high-acuity inpatient settings often experience a high burden of intensive therapy at the end of life. Strategies to identify patients at higher risk of dying in the pediatric intensive care unit (PICU) have not been explored previously. This study finds that certain variables may predict PICU death for pediatric palliative oncology patients, including delayed palliative care involvement. Preemptive identification of patients at risk for PICU death affords opportunities to study the effects of earlier palliative care integration and increased discussions around preferred location of death on end-of-life outcomes for children with cancer and their families.
Kaye E C; DeMarsh S; Gushue C A; Jerkins J; Sykes A; Lu Z; Snaman J M; Blazin L J; Johnson L M; Levine D R; Morrison R R; Baker J N
Oncologist
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/10.1634/theoncologist.2017-0650" target="_blank" rel="noreferrer noopener">10.1634/theoncologist.2017-0650</a>
Defining palliative opportunities in pediatric patients with bone and soft tissue tumors
adolescent; bone marrow; bone tumor; cancer patient; cancer recurrence; child; conference abstract; controlled study; death; disease exacerbation; do not resuscitate order; female; hospice; hospital admission; human; intensive care; major clinical study; male; palliative therapy; pediatric patient; phase 1 clinical trial; relapse; retrospective study; soft tissue tumor; solid malignant neoplasm; statistics
Background: Pediatric patients with cancer have many opportunities for increased primary or specialty palliative care (PC). This is particularly true for patients with solid tumors who often have higher symptom burden and worse outcomes. However, how many opportunities, when they occur, and if these opportunities are correlated with disease or demographic variables are unknown. Objective(s): To define palliative opportunities within pediatric cancer, and explore howthese occur in patients with solid tumors. Design/Method: A priori, nine palliative opportunity categories were defined (disease progression and relapse, hospital admission for symptoms or social concerns, intensive care or marrow transplant admission, phase 1 trial or hospice enrollment, DNR status). A single-center retrospective review was conducted on patients aged 0-17 years at diagnosis with bone/soft tissue tumors who died from 1/1/12- 11/30/17. Demographic, disease, and treatment data was collected, and descriptive statistics were performed. Timing of opportunities was evaluated over quartiles from diagnosis to death. Result(s): Patients (n = 60) had a mean of nine (SD = 4) palliative opportunities. Number or type of opportunities did not differ by primary diagnosis or demographic variables. PC consulted on 18 patients (30%) a median of 14.0 months (IQR 25.0) after diagnosis, and 2.6 months (IQR 11.5) prior to death. Likelihood of PC consult did not differ by diagnosis or total opportunities. The opportunities that preceded PC consultwere progression/relapse (9/18), escalated hospital level of care (4/18), symptom admission (3/18), and end-oflife concerns (2/18). Hospicewas involved for 72% of patients. The majority of opportunities occurred in the last quartile of the disease course (median 5.0, IQR 5.0). Conclusion(s): Patients with solid tumors incur many events warranting psychosocial or palliative support, which increase toward the end-of-life. Mean reported opportunities is likely a minimum due to stringent collection methods. No palliative opportunity or demographic variable was associated with PC consultation. Defining palliative opportunities provides an additional framework to assess the disease trajectory for patients suffering from oncologic diseases. Additional work is needed to further refine what qualifies as a palliative opportunity, how to fully capture opportunities, and how those may differ across different cancers.
Ebelhar J; Allen K; Wasilewski-Masker K; Brock K
Pediatric Blood and Cancer
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/10.1002/pbc.27713" target="_blank" rel="noreferrer noopener">10.1002/pbc.27713</a>
The conceptual understanding of pediatric palliative care: A Swiss healthcare perspective
article; child; childhood cancer; comfort; death; human; interview; nurse; oncologist; palliative therapy; pediatrics; psychologist; social worker; stigma; Switzerland
Background: Health care providers' perception of pediatric palliative care might negatively influence timely implementation. The aim of the study was to examine understanding of and attitudes towards pediatric palliative care from the perspective of health care providers working in pediatric oncology in Switzerland to promote the timely implementation of pediatric palliative care.
De Clercq E;Rost M; Rakic M; Ansari M; Brazzola P; Wangmo T; Elger B S
BMC Palliative Care
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/10.1186/s12904-019-0438-1" target="_blank" rel="noreferrer noopener">10.1186/s12904-019-0438-1</a>
The Nesting Dolls Design: A Methodology for the Recruitment of Bereaved Parents for Partnership Activities Related to Palliative Care and Bereavement Support in Paediatric Psycho-Oncology
52315-07-8 (cypermethrin); 65731-84-2 (cypermethrin); 66841-24-5 (cypermethrin); 67375-30-8 (cypermethrin); bereavement support; child; clinical article; clinician; conference abstract; confidentiality; content analysis; controlled study; cypermethrin; death; evaluation research; female; filter; follow up; human; information center; intensive care; interview; male; neonatology; nesting; palliative therapy; pediatrics; psycho-oncology; questionnaire; research ethics; writing
Objectives: 1) Fill the knowledge gaps about best practices related to collaboration with bereaved families in projects related to end-of-life practices, palliative care and parental bereavement in paediatrics. 2) Identify best practices for establishing safe partnership communication with bereaved families.
Bourque C J; Cardinal G; Dumont E; Sultan S
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2018.10.286" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.10.286</a>
Does Pediatric Palliative Care Involvement Influence Location of Death?
Death; Hospice Care; Intensive Care Units; Palliative Care; Pediatric
This study describes the influence of a palliative care team on location of death and location of death discussions with patients/caregivers, and determines whether location of death discussions influence location of death. With palliative care or a location of death discussion, patients were less likely to die in the PICU and more likely to die at home. Location of death discussions were more likely to occur if a palliative care team was involved.
Solano J; Singh M; Sherman A K; Linebarger J
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).
Sleep-disordered breathing in children with achondroplasia
Pediatrics; death; unexpected; apnea; cervicomedullary compression; decompression; infants; obstruction; respiratory complications; breathing difficulties; achondroplasia; trajectory; characteristics; obstructive sleep apnea; central apnea
Objective: Our objective was to characterize sleep-disordered breathing in 88 children with achondroplasia aged 1 month to 12.6 years. Results: At the time of their initial polysomnography, five children had previously undergone tracheostomy, and seven children required supplemental oxygen. Initial polysomnography demonstrated a median obstructive apnea index of 0 (range, 0 to 19.2 apneas/hr). The median number of central apneas with desaturation per study was 0.5 (0 to 49), the median oxygen saturation nadir was 91% (50% to 99%), and the median peak end-tidal pCO(2) was 47 mm Hg (36 to 87 mm Hg). Forty-two children (47.7%) had abnormal initial study results, usually caused by hypoxemia. Two children with severe obstructive sleep apnea eventually required continuous positive airway pressure therapy, and three additional children required tracheostomies. Conclusions: (1) Children with achondroplasia often have sleep-related respiratory disturbances, primarily hypoxemia. (2) The majority do not have significant obstructive or central apnea; however, a substantial minority are severely affected. (3) Tonsillectomy and adenoidectomy decreases the degree of upper airway obstruction in most but not all children with achondroplasia and obstructive sleep apnea. (4) Restrictive lung disease can present at a young age in children with achondroplasia.
Mogayzel P J; Carroll J L; Loughlin G M; Hurko O; Francomano C A; Marcus C L
Journal of Pediatrics
1998
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/s0022-3476(98)70358-0" target="_blank" rel="noreferrer noopener">10.1016/s0022-3476(98)70358-0</a>
Pediatric Resident Experience Caring for Children at the End of Life in a Children's Hospital
death; article; child; female; human; major clinical study; male; palliative therapy; retrospective study; controlled study; terminal care; resuscitation; education; medical record review; statistics; burnout; drug withdrawal; Burnout; End-of-Life Care; life sustaining treatment; Palliative Care; postgraduate student; resident; Resident Education
OBJECTIVES: Pediatric residents are expected to be competent in end of life (EOL) care. We aimed to quantify pediatric resident exposure to patient deaths, and the context of these exposures. METHOD(S): Retrospective chart review of all deceased patients at one children's hospital over three years collected patient demographics, time and location of death. Mode of death was determined after chart review. Each death was cross-referenced with pediatric resident call schedules to determine residents involved within 48 hours of death. Descriptive statistics are presented. RESULT(S): Of 579 patients who died during the study period, 46% had resident involvement. Most deaths occurred in the NICU (30% of all deaths) however, resident exposure to EOL care most commonly occurred in the PICU (52% of resident exposures) and were after withdrawals of life-sustaining therapy (41%), followed by non-escalation (31%) and failed resuscitation (15%). During their post-graduate year (PGY)-1, <1% of residents encountered a patient death. During PGY-2 and PGY-3, 96% and 78%, respectively, of residents encountered at least one death. During PGY-2, residents encountered a mean of 3.5 patient deaths (range 0-12); during PGY-3, residents encountered a mean of 1.4 deaths (range 0-5). Residents observed for their full 3-year residency encountered a mean of 5.6 deaths (range 2-10). CONCLUSION(S): Pediatric residents have limited but variable exposure to EOL care, with most exposures in the ICU after withdrawal of life-sustaining technology. Educators should consider how to optimize EOL education with limited clinical exposure, and design resident support and education with these variable exposures in mind. Copyright © 2019. Published by Elsevier Inc.
Trowbridge A; Bamat T; Griffis H; McConathey E; Feudtner C; Walter J K
Academic 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.acap.2019.07.008" target="_blank" rel="noreferrer noopener">10.1016/j.acap.2019.07.008</a>