Nurturing Futility in the NICU: The Dutch Perspective
Requests for life-prolonging treatments can cause irresolvable conflicts between health-care providers and surrogates. The Multiorganization Policy Statement (Bosslet et al. 2015) with recommendations to prevent and manage these conflicts creates a good opportunity to examine how end-of-life decisions are made in Dutch neonatal intensive care units and how medical futility is defined. The Dutch equivalent of medical futility in the context of NICU care has grown and developed rather independently, within the typical legal, ethical, and cultural framework of Dutch society. Moreover, intractable conflicts and legal claims about life-prolonging treatments of newborns are very rare. This makes the Multiorganization Statement recommendations only partly relevant to Dutch practice. Critics are right in their comments that a substitution for the term futility, as recommended in the statement, is unlikely to prevent or solve irresolvable conflicts. But the recommended transparency about limit setting may work well, provided physicians make sure that comfort and palliative care are always provided.
2018
Eduard Verhagen AA
Perspectives In Biology And Medicine
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/10.1353/pbm.2018.0022" target="_blank" rel="noreferrer">10.1353/pbm.2018.0022</a>
Palliative Care: Opportunities for Nursing
Ayda G. Nambayan, PhD, RN is the Training Consultant for The Ruth Foundation for Palliative and Hospice Care. Prior to this, she held various positions as a Consultant for Advanced Education and Training at Makati Medical Center, Philippines; a curriculum and distance learning developer for www.Cure4Kids.org, the educational website of the International Outreach Program of St. Jude Children's Research Hospital in Memphis, TN. In 2002, she retired from a faculty position from the University of Alabama at Birmingham, where she taught Adult Health Nursing for 25 years. Her nursing degrees were from the University of Santo Tomas, Manila, Philippines, Teacher's College, Columbia University in New York, NY and The University of Alabama at Birmingham, Birmingham, AL. Among her many professional awards include the Oncology Nursing Society's Pearl Moore Making a Difference Award in Oncology Nursing, International Award for Contributions in Cancer Care and the End of Life Nursing Education Consortium award for Pediatric Education.
2018
Nambayan AG
Asia-pacific Journal Of Oncology Nursing
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="https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763426/pdf/APJON-5-1.pdf" target="_blank" rel="noreferrer">click here for full text (open access)https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5763426/pdf/APJON-5-1.pdf</a>
The impact of stillbirth on bereaved parents: A qualitative study
PURPOSE: To explore the lived experiences and personal impact of stillbirth on bereaved parents. METHODS: Semi-structured in-depth interviews analysed by Interpretative Phenomenological Analysis (IPA) on a purposive sample of parents of twelve babies born following fetal death at a tertiary university maternity hospital in Ireland with a birth rate of c8,500 per annum and a stillbirth rate of 4.6/1000. RESULTS: Stillbirth had a profound and enduring impact on bereaved parents. Four superordinate themes relating to the human impact of stillbirth emerged from the data: maintaining hope, importance of the personhood of the baby, protective care and relationships (personal and professional). Bereaved parents recalled in vivid detail their experiences of care following diagnosis of stillbirth and their subsequent care. The time between diagnosis of a life-limiting anomaly or stillbirth and delivery is highlighted as important for parents as they find meaning in their loss. CONCLUSIONS: The impact of stillbirth on bereaved parents is immense and how parents are cared for is recalled in precise detail as they revisit their experience. Building on existing literature, these data bring to light the depth of personal experience and impact of stillbirth for parents and provides medical professionals with valuable insights to inform their care of bereaved parents and the importance of clear and sensitive communication.
2018
Nuzum D; Meaney S; O'Donoghue K
Plos One
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/10.1371/journal.pone.0191635" target="_blank" rel="noreferrer">10.1371/journal.pone.0191635</a>
Pccm fellows' palliative care knowledge and attitudes surrounding a pilot educational initiative
palliative therapy; Child; Clinical Article; cohort analysis; comfort; communication skill; Curriculum; Death; Human; Intensive Care; legal aspect; Likert scale; maturation; prospective study; role playing; simulation; spike
Learning Objectives: The importance of Palliative and End of Life Care (PC, EOL) for children in the PICU with life-limiting, chronic conditions is increasingly recognized (1). Robust PC improves outcomes by symptom score, cost, and length of life (2-4). Pediatric Critical Care fellows (PCCF) report deficiencies in PC education and knowledge (5-7). This study measured PC knowledge, attitudes, and skills of PCCF at one center assessing how maturation impacts those indices. Methods: Prospective cohort study of PCCF surrounded a series of PC workshops. Two validated adapted tools evaluated endpoints; a survey of PCCFs' comfort, knowledge and experience (8) and a Communication Assessment (CA) using SPIKES methodology (9). Graduating fellows (GF, n = 4) and a current fellow cohort (CF, n = 11) completed the survey. In a simulation workshop, faculty (n = 2) used the CA to rate fellows' communication skills (n = 15). A CF cohort (n = 11) completed the post-curriculum survey. Results: Assessed PCCF's knowledge, attitudes and skills show maturation alone inadequately instructs PC, reflecting national data (5-9). Maturation did not alter self-appraised comfort providing PC in 6 (Likert scale 1-5)(composite scores by year; 1st 3.6, 2nd 3.3; 3rd; 3.5). With training, comfort managing conflict and emotion (1st 3.2; 3rd 3), symptoms at EOL (1st 3.7; 2nd 3.6; 3rd 4.1), and legal aspects of PC (1st 3.6; 3rd 3.7) did not change. Nor, did it improve objective knowledge scores (by year; 1st 54%; 2nd 46%; 3rd 51%; GF 65% p> 0.05) or communication skills by CA (scale 0-4)(1st 2.2; 2nd 2.6; 3rd 2). PC exposure, gauged by care conferences (cc) led and recalled deaths on clinical duty (cc 1-25; M= 8.5; deaths 5-36; M 13.5), did not correlate with comfort, communication skills, or knowledge. Post-workshop, more PCCF found PC education helpful (90 v 60%) with new openness to workshops, online modules, and role-play versus didactics and observation pre-workshop. Conclusions: This study demonstrates knowledge gaps and a lack of communication skills commiserate with self-reported comfort in PC among PCCF. Maturation did not improve these endpoints. Fellows are also open to and request more PC education after exposure to a multi-modal educational intervention. Findings indicate that PCCF want and need specific curricula to affect PC knowledge and skills.
2018
Short SR; Poynter-Wong S; Flint H
Critical Care Medicine
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/10.1097/01.ccm.0000528417.25863.42" target="_blank" rel="noreferrer">10.1097/01.ccm.0000528417.25863.42</a>
Using entrustable professional activities to assess graduation readiness in pediatric critical care
intensive care; Child; critically ill patient; expectation; Female; Human; Male; statistical analysis; Terminal Care; Validity
Learning Objectives: Assessing competence in pediatric critical care medicine (PCCM) training is challenging, and Entrustable Professional Activities (EPAs) were recently introduced to enhance the assessment process. There are 7 EPAs that define the tasks expected of pediatric subspecialists in independent practice, plus an additional 3 specifically created for PCCM. The Subspecialty Pediatrics Investigator Network (SPIN) previously published validity evidence for EPAs, and the current study is focused on using the 3 PCCM specific EPAs to identify the minimum level of supervision needed for graduating fellows. We hypothesized that the EPA framework will help establish consistent expectations for the minimum level of supervision required for graduation from PCCM fellowship. Methods: Level of supervision scales were developed by SPIN with input from each pediatric subspecialty. A survey asking about the minimum level of supervision for each EPA required for graduation was sent to all 67 PCCM fellowship program directors (FPD) of ACGME accredited programs. Statistical analysis used nonparametric methods. Results: Survey response rate was 87% (58/67) and respondents had a median duration of 5 years as a FPD. For the EPA describing the acute management of the critically ill patient, 71% felt that the minimum level for graduation was the ability to manage patients with indirect supervision, requiring discussion for only a few complex cases. Only 19% expected independent practice without supervision at graduation. For the PICU management EPA, 53% felt that graduating fellows should be trusted to lead without the supervisor present but would require coaching to improve member and team performance, and only 3% felt the target for this EPA was independent practice. For providing end of life care, 50% felt that fellows should be trusted to be indirectly supervised with coaching to manage a few complex issues, while only 16% expected independent practice. The anticipated minimum level of supervision at graduation was different across the three EPAs (p < 0.05). Conclusions: Most PCCM FPDs do not expect fellows to be fully prepared to practice independently at the time of graduation. Additional investigation is needed to further standardize expectations across programs and it is important to have an infrastructure to support and supervise new graduates as they enter independent practice.
2018
Turner D; Schwartz A; Carraccio C; Herman B; Mink R
Critical Care Medicine
2018
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<a href="http://doi.org/10.1097/01.ccm.0000528428.86852.46" target="_blank" rel="noreferrer">10.1097/01.ccm.0000528428.86852.46</a>
Teamwork and conflicts in paediatric end-of-life care
conflict; Pediatrics; teamwork; Terminal Care; conflict management; Coping Behavior; editorial; emotion; health care personnel; Human; Medical Decision Making; nurse; parental attitude; physician; physiotherapist; priority journal; psychologist
2018
Verhagen AAE
Acta Paediatrica
2018
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<a href="http://doi.org/10.1111/apa.14102" target="_blank" rel="noreferrer">10.1111/apa.14102</a>
Reframing Fantasy: Toward a Common Language of Hope, Dying, and Death in Long-Shot Pediatrics
2018-01
Addison C; Hempton C
American Journal Of Bioethics
2018
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<a href="http://doi.org/10.1080/15265161.2017.1401169" target="_blank" rel="noreferrer">10.1080/15265161.2017.1401169</a>
PARENTS 2 study protocol: pilot of Parents' Active Role and ENgagement in the review of Their Stillbirth/perinatal death
healthcare improvement; neonatal death; parental involvement; perinatal mortality review process; stillbirth
BACKGROUND: The perinatal mortality review meeting that takes place within the hospital following a stillbirth or neonatal death enables clinicians to learn vital lessons to improve care for women and their families for the future. Recent evidence suggests that parents are unaware that a formal review following the death of their baby takes place. Many would welcome the opportunity to feedback into the meeting itself. Parental involvement in the perinatal mortality review meeting has the potential to improve patient satisfaction, drive improvements in patient safety and promote an open culture within healthcare. Yet evidence on the feasibility of involving bereaved parents in the review process is lacking. This paper describes the protocol for the Parents' Active Role and Engangement iN the review of their Stillbirth/perinatal death study (PARENTS 2) , whereby healthcare professionals' and stakeholders' perceptions of parental involvement will be investigated, and parental involvement in the perinatal mortality review will be piloted and evaluated at two hospitals. METHODS AND ANALYSIS: We will investigate perceptions of parental involvement in the perinatal mortality review process by conducting four focus groups. A three-round modified Delphi technique will be employed to gain a consensus on principles of parental involvement in the perinatal mortality review process. We will use three sequential rounds, including a national consensus meeting workshop with experts in stillbirth, neonatal death and bereavement care, and a two-stage anonymous online questionnaire. We will pilot a new perinatal mortality review process with parental involvement over a 6-month study period. The impact of the new process will be evaluated by assessing parents' experiences of their care and parents' and staff perceptions of their involvement in the process by conducting further focus groups and using a Parent Generated Index questionnaire. ETHICS AND DISSEMINATION: This study has ethical approval from the UK Health Research Authority. We will disseminate the findings through national and international conferences and international peer-reviewed journals.
2018-01
Bakhbakhi D; Siassakos D; Storey C; Heazell A; Lynch M; Timlin L; Burden C
Bmj Open
2018
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<a href="http://doi.org/10.1136/bmjopen-2017-020164" target="_blank" rel="noreferrer">10.1136/bmjopen-2017-020164</a>
A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses
hope; life-limiting illness; Life-threatening illness; Metasynthesis; Parent experiences
PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). BACKGROUND: Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended. REVIEW METHODS: Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006). DATA SOURCES: A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases. RESULTS: Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward. CONCLUSION: The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.
2018-01
Bally JMG; Smith NR; Holtslander L; Duncan V; Hodgson-Viden H; Mpofu C; Zimmer M
Journal Of Pediatric Nursing
2018
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<a href="http://doi.org/10.1016/j.pedn.2017.11.004" target="_blank" rel="noreferrer">10.1016/j.pedn.2017.11.004</a>
High-risk communication at the time of hospice enrollment: Standardizing pediatric hospital to hospice sign out
end-of-life care; handoff; hospice; Palliative Care; pediatric oncology; sign out
2018-01
Brock KE; Mullaney E
Pediatric Blood & Cancer
2018
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<a href="http://doi.org/10.1002/pbc.26957" target="_blank" rel="noreferrer">10.1002/pbc.26957</a>
The Importance of Parental Connectedness and Relationships With Healthcare Professionals in End-of-Life Care in the PICU
OBJECTIVES: Support from healthcare professionals in a PICU is highly valuable for parents of dying children. The way they care for the patients and their families affects the parents' initial mourning process. This study explores what interaction with hospital staff is meaningful to parents in existential distress when their child is dying in the PICU. DESIGN: Qualitative interview study. SETTING: Level 3 PICU in the Erasmus University Medical Center-Sophia Children's Hospital, Rotterdam, and the Netherlands. SUBJECTS: Thirty-six parents of 20 children who had died in this unit 5 years previously. INTERVENTIONS: Parents participated in audio-recorded interviews in their own homes. The interviews were transcribed and analyzed using qualitative methods. MEASUREMENTS AND MAIN RESULTS: Parents' narratives of their child's end-of-life stage in the PICU bespeak experiences of estrangement, emotional distancing, and loneliness. Significant moments shared with hospital staff that remained valuable even after 5 years primarily involved personal connectedness, reflected in frequent informational updates, personal commitment of professionals, and interpersonal contact with doctors and nurses. CONCLUSIONS: Parents whose children died in the PICU value personal connectedness to doctors and nurses when coping with existential distress. Medical and nursing training programs should raise awareness of parents' need for contact in all interactions but especially in times of crisis and apprehension.
2018-01
Falkenburg JL; Tibboel D; Ganzevoort RR; Gischler SJ; van Dijk M
Pediatric Critical Care Medicine
2018
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<a href="http://doi.org/10.1097/pcc.0000000000001440" target="_blank" rel="noreferrer">10.1097/pcc.0000000000001440</a>
The clock: Not a question of time
2018-01
Garcia-Salido A; Martino-Alba R
Palliative & Supportive Care
2018
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<a href="http://doi.org/10.1017/s1478951517001067" target="_blank" rel="noreferrer">10.1017/s1478951517001067</a>
Pathfinders: Promoting healthy adjustment in bereaved children and families
Pathfinders is a 10-session program developed in a community setting to creatively address the diverse needs of bereaved children and families, prevent complications of grief and trauma, and promote healthy adaptation. It is an accessible, grief-focused and trauma-informed family systems model that is theory-driven, research-informed, and grounded in practice-based evidence. Pathfinders incorporates principles central to narrative approaches, with a focus on restorative processes for helping children and families stay on track developmentally. This article outlines the structure, process, and content of Pathfinders, including examples of creative interventions used within the program.
2018-01
Griese B; Burns M; Farro SA
Death Studies
2018
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<a href="http://doi.org/10.1080/07481187.2017.1370416" target="_blank" rel="noreferrer">10.1080/07481187.2017.1370416</a>
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Chd; Hypoplastic Left Heart Syndrome; Paediatric palliative care; Parental stress
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76+/-8.46 versus 7.0+/-5.0 and 46.34+/-12.59 versus 29.8+/-6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
2018-01
Hancock HS; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M; Yu S; Welch S; Donohue J; Lowery R; Aiyagari R
Cardiology In The Young
2018
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<a href="http://doi.org/10.1017/s1047951117002761" target="_blank" rel="noreferrer">10.1017/s1047951117002761</a>
Reflections on the development of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness
bereavement; Death; Families; serious illness; therapeutic recreation
While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned.
2018-01
Hanlon P; Guerin S; Kiernan G
Death Studies
2018
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<a href="http://doi.org/10.1080/07481187.2017.1407012" target="_blank" rel="noreferrer">10.1080/07481187.2017.1407012</a>
Fragile lives with fragile rights: Justice for babies born at the limit of viability
end-of-life decision-making; gestational age policies; justice; Neonatology
There is an inconsistency in the ways that doctors make clinical decisions regarding the treatment of babies born extremely prematurely. Many experts now recommend that clinical decisions about the treatment of such babies be individualized and consider many different factors. Nevertheless, many policies and practices throughout Europe and North America still appear to base decisions on gestational age alone or on gestational age as the primary factor that determines whether doctors recommend or even offer life-sustaining neonatal intensive care treatment. These policies are well intentioned. They aim to guide doctors and parents to make decisions that are best for the baby. That is an ethically appropriate goal. But in relying so heavily on gestational age, such policies may actually do the babies a disservice by denying some babies treatment that might be beneficial and lead to intact survival. In this paper, we argue that such policies are unjust to premature babies and ought to be abolished. In their place, we propose individualized treatment decisions for premature babies. This would treat premature babies as we treat all other patients, with clinical decisions based on an individualized estimation of likelihood that treatment would be beneficial.
2018-01
Hendriks MJ; Lantos JD
Bioethics
2018
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<a href="http://doi.org/10.1111/bioe.12428" target="_blank" rel="noreferrer">10.1111/bioe.12428</a>
Early Parental Loss and Intimate Relationships in Adulthood: A Nationwide Study
Being able to form and maintain intimate relationships is an essential part of development and the early loss of a parent may negatively affect this ability. This study investigates the association between parental loss before the age of 18 years and the formation and dissolution of marriage and cohabitation relationships in adulthood, in relation to factors that may help identify potentially vulnerable subgroups of bereaved children, that is, sex of the deceased parent, cause of death and child's age at the time of death. Using data from national registries, we followed all children born in Denmark between 1970 and 1995 (n = 1,525,173) and used Poisson regression models to assess rate ratios by gender for relationship formation and separation according to early parental loss. We stratified the analyses by sex of the deceased parent, cause of death and child's age at the time of death, and adjusted for the confounding effects of parental income, education level, and psychiatric illness. We found that parental loss was associated with a higher rate of relationship formation for young women, but not young men, and higher rates of separation for both men and women. The associations with separation were stronger for persons who lost a parent to suicide than to other causes. The effects were relatively small, a possible testimony to the resilience of developmental processes in most children. However, as long-term relationships are associated with physical and psychological health, interventions for bereaved children and families are important, especially in the subgroup bereaved by suicide. (PsycINFO Database Record
2018-01
Hoeg BL; Johansen C; Christensen J; Frederiksen K; Dalton SO; Dyregrov A; Boge P; Dencker A; Bidstrup PE
Developmental Psychology
2018
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<a href="http://doi.org/10.1037/dev0000483" target="_blank" rel="noreferrer">10.1037/dev0000483</a>
Withdrawal of life-sustaining therapy
PURPOSE OF REVIEW: The aim of this review is to examine literature relating to the withdrawal of life-sustaining therapy (WLST). RECENT FINDINGS: Discussions regarding end-of-life issues in adults and children are not occurring comprehensively. Discussions relating to the WLST in the pediatric population varies by institution and may vary by race, age, health insurance, diagnosis, and severity of illness. Completing advance directives prior to placement of life-sustaining treatments is not consistent practice. With the WLST, differences in perspectives exist between medical specialties, within one specialty at different levels of training, and in physicians' ethical and psychological responses to the WLST. The timing of WLST appears to be influenced by ICU strain and communication issues. Study outcomes differ regarding the functionally favorable survival of patients who have had WLST. Universal guidelines for the WLST may not address individual patient circumstances. SUMMARY: Discussions of end-of-life issues early in the course of a patient's health care will contribute to the healthcare team's understanding and respect of the patient's wishes. This article addresses the withdrawal of left ventricular assist devices; attending physicians and physicians-in-training perspectives of WLST; do physicians distinguish between withholding and WLST; the timing of WLST; guidelines for the process of WLST; and pediatrics and end-of-life decisions.
2018-01
Jericho BG
Current Opinion In Anesthesiology
2018
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<a href="http://doi.org/10.1097/aco.0000000000000570" target="_blank" rel="noreferrer">10.1097/aco.0000000000000570</a>
It's All About Communication: A Mixed-Methods Approach to Collaboration Between Volunteers and Staff in Pediatric Palliative Care
Communication; cooperation; Palliative Care; patient care team; Pediatrics; volunteers
BACKGROUND: Multidisciplinary teamwork is considered central to pediatric palliative care. Although different studies state that volunteers play an essential role in palliative care, little is known about the collaboration between volunteers and staff. AIM: This study aims to explore and compare the perspectives of volunteers and staff regarding collaboration in a pediatric palliative care unit. DESIGN: A mixed-methods approach was chosen to appropriately reflect the complex aspects of collaboration. SETTING/PARTICIPANTS: Both face-to-face interviews with staff who work together with volunteers and a group discussion with all volunteers were conducted. These were supplemented by 2 questionnaires designed for this study that examined participants' characteristics and their estimation of what information volunteers need before they meet a patient. RESULTS: Nine staff members and 7 volunteers participated in this study. Their ideas of collaboration could be grouped into 3 categories: (i) factual level of collaboration, (ii) relationship level of collaboration, and (iii) overall appraisal of collaboration (suggestions for improvement). CONCLUSION: Communication can be considered a key factor in successful collaboration between volunteers and staff. Because many patients in pediatric palliative care units are not able to communicate verbally, good information flow between volunteers and staff is crucial for ensuring quality patient care. Moreover, communication is the key to establishing a team philosophy by clarifying roles and building relationships between volunteers and staff.
2018-01
Meyer D; Schmidt P; Zernikow B; Wager J
American Journal Of Hospice & Palliative Medicine
2018
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<a href="http://doi.org/10.1177/1049909117751419" target="_blank" rel="noreferrer">10.1177/1049909117751419</a>
The journey through care: study protocol for a longitudinal qualitative interview study to investigate the healthcare experiences and preferences of children and young people with life-limiting and life-threatening conditions and their families in the West Midlands, UK
organisation of health services; Paediatric palliative care; Palliative Care; Qualitative Research
INTRODUCTION: The number of children and young people living with life-limiting and life-threatening conditions is rising. Providing high-quality, responsive healthcare for them and for their families presents a significant challenge. Their conditions are often complex and highly unpredictable. Palliative care is advocated for people with life-limiting and life-threatening conditions, but these services for children are highly variable in terms of availability and scope. Little is known about the lived experiences and preferences of children and their families in terms of the palliative care that they do, or do not, receive. This study aims to produce an in-depth insight into the experiences and preferences of such children and families in order to develop recommendations for the future provision of services. The study will be carried out in the West Midlands, UK. METHODS AND ANALYSIS: A qualitative study comprising longitudinal interviews over a 12-month period with children (aged 5-18 years) living with life-limiting or life-threatening conditions and their family members. Data analysis will start with thematic analysis, followed by narrative and cross-case analysis to examine changing experiences and preferences over time, at the family level and within the wider healthcare system. Patient and public involvement (PPI) has informed the design and conduct of the study. Findings will be used to develop recommendations for an integrated model of palliative care for children in partnership with the patient and public involvement (PPI) group. ETHICS AND DISSEMINATION: Ethical approval was granted in September 2016 by the National Health Service Health Research Authority (IRAS ID: 196816, REC reference: 16/WM/0272). Findings will be of immediate relevance to healthcare providers, policy-makers, commissioners and voluntary sector organisations in the UK and internationally. Reports will be prepared for these audiences, as well as for children and their families, alongside academic outputs.
2018-01
Mitchell S; Slowther AM; Coad J; Dale J
Bmj Open
2018
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<a href="http://doi.org/10.1136/bmjopen-2017-018266" target="_blank" rel="noreferrer">10.1136/bmjopen-2017-018266</a>
LGBTQ-Inclusive Hospice and Palliative Care: Transforming Professional Practice
2018-01
Ng HH
Lgbt Health
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/10.1089/lgbt.2017.0157" target="_blank" rel="noreferrer">10.1089/lgbt.2017.0157</a>
Intensive care: because we can or because we should?
Intensive Care; mortality; Palliative Care
2018-01
Pearson GA
Archives Of Disease In Childhood
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/10.1136/archdischild-2017-314731" target="_blank" rel="noreferrer">10.1136/archdischild-2017-314731</a>
The enactment stage of end-of-life decision-making for children
end-of-life decision-making; life-limiting illness; paediatrics; Palliative Care; parental support
OBJECTIVES: Typically pediatric end-of-life decision-making studies have examined the decision-making process, factors, and doctors' and parents' roles. Less attention has focussed on what happens after an end-of-life decision is made; that is, decision enactment and its outcome. This study explored the views and experiences of bereaved parents in end-of-life decision-making for their child. Findings reported relate to parents' experiences of acting on their decision. It is argued that this is one significant stage of the decision-making process. METHODS: A qualitative methodology was used. Semi-structured interviews were conducted with bereaved parents, who had discussed end-of-life decisions for their child who had a life-limiting condition and who had died. Data were thematically analysed. RESULTS: Twenty-five bereaved parents participated. Findings indicate that, despite differences in context, including the child's condition and age, end-of-life decision-making did not end when an end-of-life decision was made. Enacting the decision was the next stage in a process. Time intervals between stages and enactment pathways varied, but the enactment was always distinguishable as a separate stage. Decision enactment involved making further decisions - parents needed to discern the appropriate time to implement their decision to withdraw or withhold life-sustaining medical treatment. Unexpected events, including other people's actions, impacted on parents enacting their decision in the way they had planned. Several parents had to re-implement decisions when their child recovered from serious health issues without medical intervention. Significance of results A novel, critical finding was that parents experienced end-of-life decision-making as a sequence of interconnected stages, the final stage being enactment. The enactment stage involved further decision-making. End-of-life decision-making is better understood as a process rather than a discrete once-off event. The enactment stage has particular emotional and practical implications for parents. Greater understanding of this stage can improve clinician's support for parents as they care for their child.
2018-01
Sullivan JE; Gillam LH; Monagle PT
Palliative & Supportive Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951517001110" target="_blank" rel="noreferrer">10.1017/s1478951517001110</a>
The Pepi-Pod study: Overnight video, oximetry and thermal environment while using an in-bed sleep device for sudden unexpected death in infancy prevention
bed-sharing; indigenous; physiology; sudden infant death syndrome; temperature
AIM: The aim of this study was to identify the potential risks and benefits of sleeping infants in a Pepi-Pod distributed to families with high risk of sudden unexpected death in infancy compared to a bassinet. METHODS: Forty-five mostly indigenous Maori mothers who were referred by local health providers to receive a Pepi-Pod were surveyed at recruitment, 1 and 3 months. A sleep study at 1 month included infrared video, oximetry and temperature measures. RESULTS: When compared with 89 historical bassinet controls, an intention-to-treat analysis of questionnaires showed no increase in direct bed sharing but demonstrated significantly less sharing of the maternal bedroom at both interviews, with the majority of those not sleeping in the maternal bedroom, actually sleeping in the living room. The 1 month 'as-used' analysis showed poorer maternal sleep quality. The 'as-used' analysis of video data (24 Pepi-Pod and 113 bassinet infants) also showed no increase in direct bed sharing, head covering or prone/side sleep position. Differences in oxygen saturation were not significant, but heart rate was higher in the Pepi-Pod infants by 8.37 bpm (95% confidence interval 4.40, 12.14). Time in the thermal comfort zone was not different between groups despite Pepi-Pod infants being situated in significantly warmer rooms. CONCLUSIONS: Overall, we found that most differences in infant risk behaviours in a Pepi-Pod compared to a bassinet were small, with confidence intervals excluding meaningful differences. We noted poorer maternal sleep quality at 1 month. Higher infant heart rates in the Pepi-Pod group may be related to higher room temperatures. The Pepi-Pod appears physiologically safe but is associated with lower reported maternal sleep quality.
2018-01
Tipene-Leach D; Baddock SA; Williams SM; Tangiora A; Jones R; McElnay C; Taylor BJ
Journal Of Paediatrics And Child Health
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/jpc.13845" target="_blank" rel="noreferrer">10.1111/jpc.13845</a>
Total Pain' in Children with Severe Neurological Impairment
cerebral palsy; Chronic Pain; cognitive impairment; neurological impairment; Paediatric palliative care; persistent pain; 'Total Pain'
Many children with palliative care needs experience difficulty in managing pain. Perhaps none more so than those with severe neurological impairment. For many years; behaviours in these children were misunderstood. As a result; pain was poorly recognised and inadequately managed. Significant advances have been made in the assessment and management of pain in this challenging group of patients. We summarise these advances; drawing on our own experience working with infants; children and young adults with palliative care needs within a UK tertiary paediatric palliative care service. We expand on the recent understanding of 'Total Pain'; applying a holistic approach to pain assessment and management in children with severe neurological impairment.
2018-01
Warlow TA; Hain RDW
Children (basel)
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/10.3390/children5010013" target="_blank" rel="noreferrer">10.3390/children5010013</a>
A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Children; Meditation; mobile applications; multimedia; Palliative; relaxation; Stress; technology
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.
2018-01
Weekly T; Walker N; Beck J; Akers S; Weaver M
Children (basel)
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/10.3390/children5020016" target="_blank" rel="noreferrer">10.3390/children5020016</a>
From "Longshot" to "Fantasy": Obligations to Pediatric Patients and Families When Last-Ditch Medical Efforts Fail
futility; hope; Intensive Care; Pediatrics
Clinicians at quaternary centers see part of their mission as providing hope when others cannot. They tend to see sicker patients with more complex disease processes. Part of this mission is offering longshot treatment modalities that are unlikely to achieve their stated goal, but conceivably could. When patients embark on such a treatment plan, it may fail. Often treatment toward an initial goal continues beyond the point at which such a goal is feasible. We explore the progression of care from longshot to fantasy using two pediatric cases. This progression may be differentiated into four distinct stages of care related to the potential of achieving the initial goals of care. Physicians are often ill prepared for the progression of treatments from a longshot hope to an unfeasible and, therefore, typically unjustified intervention. We present a structured approach to guide clinicians at referral institutions where these situations may be common. The transition of care from "longshot" to "fantasy" is an inherent part of quaternary care for the sickest of patients that has been underexplored. Physicians are often poorly equipped to approach that transition. We advocate this approach to the shift from longshot to fantasy with the belief that such a structured method will have multiple benefits, including: reduced suffering for the patient; decreased emotional burden on patient and family; decreased provider moral distress; increased likelihood of seeking high quality palliative care earlier; and provision of honest and straightforward information to patients and their families.
2018-01
Weiss EM; Fiester A
American Journal Of Bioethics
2018
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<a href="http://doi.org/10.1080/15265161.2017.1401157" target="_blank" rel="noreferrer">10.1080/15265161.2017.1401157</a>
Neonatal mortality and associated factors in newborn infants admitted to a Neonatal Care Unit
child mortality; Neonatal mortality; Neonatal respiratory distress syndrome; Perinatal mortality; preterm birth
INTRODUCTION: The increasing survival rate of preterm infants has altered the epidemiology of neonatal diseases; however, neonatal mortality is still the main component of child mortality. The objective of this study was to evaluate neonatal mortality and associated factors in newborn infants admitted to a neonatal care unit. MATERIAL AND METHODS: Prospective cohort study conducted between January 2016 and January 2017 at Hospital Civil de Guadalajara "Dr. Juan I. Menchaca." The incidence of deaths and associated conditions was evaluated using a multivariate logistic regression analysis. RESULTS: A total of 9366 live births were registered; 15% (n: 1410) of these were admitted to the neonatal care unit. The mortality rate was 125.5 per 1000 hospitalized newborn infants (95% confidence interval [CI]: 109-144); the main reasons for admission were congenital malformations or genetic disorders (28.2%), infections (24.9%), and respiratory distress (20.9%). The conditions associated with death were gestational age < 37 weeks (OR: 2.41, 95% CI: 1.49-3.93), birth weight < 1500 grams (OR: 6.30, 95% CI: 4.15-9.55), moderate/severe respiratory distress at 10 minutes (OR: 1.89, 95% CI: 1.24-2.86), Apgar score < 7 at 5 minutes (OR: 9.40, 95% CI: 5.76-15.31), congenital malformations (OR: 5.52, 95% CI: 3.12-9.78), and less than 5 antenatal care visits (OR: 1.51, 95% CI: 1.09-2.08). CONCLUSIONS: Preterm birth, low birth weight, respiratory distress, Apgar score < 7, congenital malformations, and a history of < 5 antenatal care visits were associated with a higher risk for death.
2018-02
Lona Reyes JC; Perez Ramirez RO; Llamas Ramos L; Gomez Ruiz LM; Benitez Vazquez EA; Rodriguez Patino V
Archivos Argentinos De Pediatria
2018
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<a href="http://doi.org/10.5546/aap.2018.eng.42" target="_blank" rel="noreferrer">10.5546/aap.2018.eng.42</a>
Opioid treatment for mixed pain in pediatric patients assisted by the Palliative Care team. Five years of experience
Child; Methadone; Morphine; opioid analgesics; pain
Pain is defined as an unpleasant sensory and emotional experience associated with actual or potential tissue damage. Depending on its pathophysiological mechanism, it may be classified into nociceptive, neuropathic, and mixed pain. If pain is moderate to severe, a strong opioid should be administered and, when this is the case, morphine is the drug of choice. If morphine is ineffective or causes intolerable adverse effects, opioid rotation is recommended. Our objective was to describe the drug management for mixed pain used in patients assisted by the Palliative Care team of Hospital General de Ninos Pedro de Elizalde between August 2011 and September 2015. A total of 72 patients were included. Their mean age was 10.1 years, and the most common underlying disease was cancer. The initial opioid was morphine in 57 cases; 48 patients received adjuvant drugs. Opioid rotation was indicated in half of cases, and the most common switch was from morphine to methadone.
2018-02
Yazde Puleio ML; Gomez KV; Majdalani A; Pigliapoco V; Santos Chocler G
Archivos Argentinos De Pediatria
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/10.5546/aap.2018.eng.62" target="_blank" rel="noreferrer">10.5546/aap.2018.eng.62</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
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<a href="http://doi.org/10.1542/peds.2012-0981" target="_blank" rel="noreferrer">10.1542/peds.2012-0981</a>
Parental perceptions of forgoing artificial nutrition and hydration during end-of-life care
artificial feeding; concept formation; hydration; Terminal Care; Article; Child care; child death; clinical practice; Controlled Study; decision making; Female; Human; Male; parental attitude; personal experience; priority journal; Qualitative Research; quality of life; Religion; satisfaction
BACKGROUND AND OBJECTIVE: Forgoing artificial nutrition and hydration (FANH) in children at the end of life (EOL) is a medically, legally, and ethically acceptable practice under speci fi c circumstances. However, most of the evidence on FANH involves dying adults. There is a paucity of pediatric evidence to guide health care providers' and parents' decision-making around this practice. Objectives were (1) to explore the experiences of bereaved parents when a decision had been made to FANH during EOL care for their child and (2) to describe the perceived quality of death in these children, as reported by their parents. METHODS: This was a qualitative study using in-depth interviews with parents whose children died after a decision to FANH. Parental perceptions about the experience and their child's quality of death were explored. Interviews were audiotaped and transcribed, then data were analyzed by using interpretive description methodology. RESULTS: All parents were satisfi ed with their decision to FANH and believed that their child's death was generally peaceful and comfortable. The child's perceived poor quality of life was central to the decision to FANH, with feeding intolerance often contributing to this perception. Despite overall satisfaction, all parents had doubts and questions about the decision and benefited from ongoing assurances from the clinical team. CONCLUSIONS: FANH in children at the EOL is an acceptable form of palliation for some parents and may contribute to a death that is perceived to be peaceful and comfortable. In situations in which FANH may be a reasonable possibility, physicians should be prepared to introduce the option. Copyright _ 2013 by the American Academy of Pediatrics.
2013
Rapoport A; Shaheed J; Newman C; Rugg M; Steele R
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.2012-1916" target="_blank" rel="noreferrer">10.1542/peds.2012-1916</a>
Paediatric palliative care in Denmark should be strengthened
standards; adolescent; Child; complication; Denmark; Family; Human; infant; neoplasm/ep [Epidemiology]; neoplasm/th [Therapy]; Palliative therapy; Patient Care; preschool child
Paediatric palliative care is the total care for the child's body, mind and spirit, and involves support to the family. It begins when a life-threatening disease is diagnosed and depends on an interdisciplinary team approach. In 2013, 295 children under the age of 16 years died in Denmark. Of these, 195 were less than one year old. Most children and their families may prefer death at home if possible. Early planning allows for better integration of home-care services and ensures that death occurs at the place that is best for the child and family.
2014
Jespersen BA; Clausen N; Sjogren P
Ugeskrift For Laeger
2014
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What do transplant physicians think about palliative care? A national survey study
medical oncologist; palliative therapy; Adult; bone marrow; Caregiver; Child; conference abstract; Female; friend; graft recipient; graft versus host reaction; hematologic disease; Hematopoietic stem cell transplantation; Hispanic; hospice; Human; human tissue; Male; outpatient care; patient referral; Perception; Questionnaire; Trust; United States
Background: Palliative care (PC) has been shown to improve quality of life, symptom burden, and mood in patients with advanced solid tumors as well as those with hematologic malignancies undergoing hematopoietic stem cell transplantation (HSCT). Despite these improvements in patientcentered outcomes, PC is under-utilized in the care of patients undergoing HSCT. We hypothesized that this may in part be due to transplant physicians' perceptions and attitudes about PC, which have not been fully elucidated. Methods: We conducted a cross-sectional, web-based survey of transplant physicians who care for patients with hematologic diseases in January-February 2017. Participants were recruited from the American Society for Blood and Marrow Transplantation (ASBMT) membership list. Using a 28-item questionnaire adapted from prior studies of medical oncologists, we examined transplant physicians' 1) access to PC services; 2) perceptions and attitudes about PC; and 3) perceptions of the unmet PC needs of HSCT patients and their caregivers. Results: Of 1005 eligible physicians, 277 transplant physicians completed the questionnaire yielding a response rate of 28%. The majority were white (194/277, 70%), not Hispanic or Latino (194/277, 70%), and male (179/277, 65%). All regions in the United States were represented. Most physicians (179/277, 65%) provided care to adult patients, with 28% (77/277) to pediatric patients and 8% (21/277) to both groups. The majority (159/277, 57%) provided care to both non-HSCT and HSCT patients, with 43% (118/277) to HSCT patients only. Overall, 36% (101/277) had < 10 years of practice, 29% (80/277) had 10-20 years, and 35% (96/277) had > 20 years in practice. Physicians collaborated with PC services more often for inpatient (121/277, 44%) than outpatient care (57/277, 21%). The quality of inpatient and outpatient PC services were considered excellent by 45% (124/77) and 30% (82/277) of physicians, respectively. Only 14% (39/277) reported collaborating often with home hospice services. Most physicians (233/277, 84%) felt that they should coordinate the care of their patients across all stages of disease including at the end of life (EOL). The majority (210/277, 76%) stated that they trust PC clinicians to care for their patients, but 40% (110/277) agreed that PC clinicians do not have enough understanding to counsel their HSCT patients regarding their treatment. Most expressed concerns about how patients perceive PC [Figure 1 and Figure 2]. For example, 82% (227/277) of physicians reported that when patients hear the term PC, they feel scared. In addition, 65% (180/277) reported that if a PC referral is suggested, patients might think nothing more can be done for their disease. The majority of transplant physicians reported that the service name 'palliative care' is a barrier to PC utilization [Figure 3]. However, most physicians recognized substantial unmet PC needs in their population including 1) physical symptoms (56%); 2) graft-versus-host disease symptoms (51%), 3) emotional and psychological needs (71%); 4) spiritual needs (63%); 5) preparing for future medical care (65%); and 6) supporting family and friends (69%). Conclusions: Despite reporting immense PC needs for HSCT patients, transplant physicians have a strong sense of commitment to address these needs. While the majority of respondents reported trusting PC, they also expressed substantial concerns about PC clinicians' knowledge about HSCT. In addition, most transplant physicians were concerned about patients' perception of the term 'palliative care'. Interventions are needed to promote collaboration, improve perceptions, and enhance integration of PC for transplant recipients. (Figure Presented).
2017
El-Jawahri A; LeBlanc TW; Burns LJ; Denzen E; Meyer CL; Mau LW; Roeland EJ; Wood WA; Petersdorf E
Blood
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).
Neurological palliative care in children
palliative therapy; adolescent; Adult; Child; chromosome aberration; Controlled Study; Female; Home Care; hospice; Human; Icd-10; infant; major clinical study; Male; metabolic disorder; mortality; neoplasm; nervous system malformation; neurology; preschool child; retrospective study; Statistics
Background: The Centre for Pediatric Palliative Care at the Medical Center of the University of Munich is one of the largest in Germany. Care is provided yearly to 90-100 children with advanced lifelimiting diseases living at home (at a distance of up to 150 km from the Center) and since 2016 also on a dedicated 8-beds palliative care inpatient unit, the first at a German University Hospital. Objective: Clinical experience suggests an important role of neurological disorders and neurological symptoms in pediatric palliative care. Patients and Methods/Material and Methods: We conducted a retrospective survey of 212 patients (median age 5.7 years, interquartile range [IR] 10.9) followed between 2009-2015 by the specialized pediatric palliative home care (SPPHC) team of the Center. Results * The main ICD-10 groups were nervous system, congenital abnormalities, neoplasia and metabolic disease, reflecting the German mortality statistics for patients 1-20 years. * The cumulative duration of SPPHC was 3.5 months (IR: 7.7). * Seventy-five percent of patients (N=160/212) suffered from neurological problems including neuromuscular conditions (n=17, 8%). Primary neurologic diseases were present in 70 patients. Neurological involvement, often severe, was seen in 96% of patients with metabolic diseases (n=24/25), 60% of patients with congenital/ chromosomal abnormalities (n=39/65), and 53% of tumor patients (n=25/47). * Eighty-four percent of patients died at home, 12% in hospital and 4% in a hospice, with 96% dying at their preferred place. Conclusion This data shows the pivotal importance of neurological diseases and symptoms in pediatric palliative care. Child neurology expertise should therefore be an integral part of any pediatric palliative care team. More research is needed in this area.
2017
Fuhrer M
Journal Of The Neurological Sciences
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jns.2017.08.093" target="_blank" rel="noreferrer">10.1016/j.jns.2017.08.093</a>
Enhancing resilience in hospitalized children and adolescents
hospitalized child; Anxiety; biofeedback; California; Child; clinical psychology; Comorbidity; complication; distress syndrome; Female; Hospitalization; Human; Male; Mental Health; music; pain; Palliative therapy; pet therapy; PostTraumatic Stress Disorder; psychiatrist; psychosocial care; Socialization; wellbeing
Objectives: This presentation will describe a collaborative intervention that can enhance resilience in hospitalized patients when they are struggling with the emotional sequelae of their medical illness. The presentation will discuss the specialty services at the University of California, San Francisco, Benioff Children's Hospital (UCSF BCH) that work cooperatively to support salutogenesis (the origin of health), in contrast to pathogenesis. The efficacy of our multidisciplinary approach will be demonstrated through descriptions of changes in patients' mental status and subjective reports of distress from patients and parents. Methods: This seminar will present our multidisciplinary approach to enhancing well-being and supporting resilience. The presentation will describe the collaboration of several complementary specialties. Primary source material and anecdotal reports from clinical cases will be presented from these medical, psychological, and psychosocial disciplines. Results: At UCSF BCH, specialists play complementary roles in the effort to support the emotional well-being of hospitalized patients. The child and adolescent consultation-liaison psychiatrist provides insight into psychiatric comorbidities that may be contributing to distress and interfere with coping. Pharmacologic interventions target the symptoms of these comorbid illnesses. Pediatric palliative care physicians address the physiologic symptoms endured by children with serious medical illnesses. Clinical psychologists help to identify the feedback loop between anxiety and pain and enhance a sense of safety through empirically validated interventions for anxiety and traumatic stress. The Child Life Specialist's role includes preparation for procedures; creating and implementing a coping plan for individual procedures and overall hospitalization through art and music; and providing psychosocial support through socialization, medical play, pet therapy, and biofeedback. Conclusions: Diverse disciplines can work collaboratively to support the overall well-being of the hospitalized child and his/her family members by effectively promoting coping. This multidisciplinary approach to enhancing resilience enables children to thrive even if their illnesses are life-limiting.
2017
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jaac.2017.07.064" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.064</a>
Posttraumatic growth in hospitalized children and adolescents
hospitalized child; Attention; California; Child; childhood; Female; Human; injury; Male; Palliative therapy; psychiatrist; psychologist; Psychology; role stress; systematic review; wellbeing
Objectives: This presentation will describe the phenomenon of posttraumatic growth through a review of the literature on complex developmental trauma and salutogenesis. A description of a multidisciplinary approach to support posttraumatic growth (PTG) will also be presented. Methods: A review of the literature on adverse childhood events, complex developmental trauma,medical trauma in children, positive psychology, and PTG will be presented. This seminarwill thendescribe amultidisciplinary, collaborative approach [developed at University of California, San Francisco Benioff Children's Hospital (UCSF BCH)] to enhance well-being and support PTG. Results: There is much attention being paid to the role that complex developmental trauma and adverse childhood events (ACEs) play in determining the overall well-being of children and adolescents. One ACE that is particularly relevant to consultation-liaison (C/L) pediatric psychiatrists is the threat to bodily integrity; serious medical illness (and its treatment) is one such threat. ACEs have been associated with the maladaptive consequences of the stress response. However, it is important to highlight the auspicious role of stress in addition to its adaptive role (supporting survival). One positive aspect of stress is PTG where individuals gain strength and insight from crises. When medical trauma can be reframed as a stressor that promotes PTG, ACE is transformed from something pathogenic to an experience that is salutogenic. At UCSF BCH, a number of specialists play complementary roles in the effort to support salutogenesis. Our multidisciplinary, collaborative approach involves child and adolescent C/L psychiatrists, pediatric palliative care physicians, psychologists, and child life specialists in the effort to promote coping and enhance the emotional well-being of hospitalized patients. Conclusions: Medical trauma can be considered an ACE that challenges the resilience of both patients and their families. Interventions informed by the field of positive psychology can enhance resilience by supporting salutogenesis. Diverse disciplines can work collaboratively to support well-being and enhance PTG.
2017
Ihle EC
Journal Of The American Academy Of Child And Adolescent Psychiatry
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jaac.2017.07.593" target="_blank" rel="noreferrer">10.1016/j.jaac.2017.07.593</a>
Neurodegenerative conditions: Exploring the role of music to enhance speech and cognitive functioning in children with batten disease
Music Therapy; neuronal ceroid lipofuscinosis; speech; Child; cohort analysis; endogenous compound; Female; Human; Language; Male; Mood; Perception; singing; Teaching
Batten disease, the most common form of the neuronal ceroid lipofuscinoses, is a genetic life-limiting neurodegenerative condition that presents as early-onset dementia in children (Mole, Williams and Goebel, 2011). Symptoms include blind-ness, epilepsy, hallucinations, memory loss, the decline of speech, language and swallowing abilities, and the catastrophic deterioration of fine and gross motor skills (Bills et al., 1998). In a recent European research initiative led by Bengt Elmerskog (National Resource Centre for VI, Norway), exploring educational and therapeutic strategies for children with Batten disease, parents reported that music plays an increasingly significant role in their children's lives as the disease progresses. Evidence investigating the effects of music on neurological conditions has highlighted important links between music perception and speech, language, cognition and movement (Zatorre, 2013, Magee, 2017). This presentation will illustrate initial findings from two studies currently in train at the Applied Music Research Centre at the University of Roehampton. The first is following a cohort of 12 children and young people with Batten disease (CLN2, CLN3, CLN5, CLN 6 and CLN8) over a period of three years, to ascertain the extent to which weekly musical interventions and music therapy may have the capacity to regulate speech, control movement, enhance mood and promote social interac-tion. The second, doctoral study, which focuses on CLN3, the juvenile form of Batten disease, explores how singing may facilitate the production of expressive language when speech is in decline through (a) encouraging patients to learn the benefits of melodic intonation and rhythmic speaking techniques, and (b) teaching patients a repertoire of 'micro-songs', that embody key functional language. It is proposed that techniques may help scaffold language and everyday speech and, subsequently, maintain functional speech and communication for longer.
2017
Ockelford A; Atkinson R
Developmental Medicine And Child Neurology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/dmcn.13623" target="_blank" rel="noreferrer">10.1111/dmcn.13623</a>
Prevalence and management of dystonia in a paediatric palliative care cohort
dystonia; palliative therapy; prevalence; 302-17-0 (chloral hydrate); 4205-90-7 (clonidine); 4205-91-8 (clonidine); 57066-25-8 (clonidine); benzodiazepine derivative; Child; chloral hydrate; Clinical Article; clonidine; cohort analysis; cross-sectional study; Diagnosis; documentation; England; Female; Human; joint; Male; neurology; precancer; preschool child; seizure
Objectives: Dystonia and seizures can be common, unpredictable and distressing neurological symptoms in paediatric palliative care. Emergency seizure management is increasingly under joint neurology and palliative care, often incorporated into "passport type" individual plans, as advocated by the Royal College of Paediatrics and Child Health. This is rarer in dystonia. We evaluated the comparative frequency of dystonia and seizures in a cohort of children receiving paediatric palliative care and examined how emergency plans differ between neurology, palliative care and in collaboration. Methods: We performed a cross-sectional analysis of the palliative care database at Evelina London Children's Hospital, a non-malignant caseload covering southeast England. Documentation over 12 months (preceding July 2017) was reviewed to assess the frequency of patients with dystonia and seizures, current relevant therapies and proposed emergency management. Results: In a cohort of 109 children with a complex range of diagnoses (mean age = 6.0 years), 37% (n=40) suffered from seizures, 27% (n=29) from dystonia and 43% (n=47) from both. Emergency dystonia plans were identified in 51.7% (15/29) of patients: 7 by palliative care and 8 by neurology. No collaborative plans were found. Emergency seizure plans were identified in 80% (32/40) of patients: 11 by palliative care, 9 by neurology and 12 in collaboration. Conclusions: Dystonia is almost as common as seizures in children with non-malignant conditions receiving palliative care. Individualised seizures plans were commonly documented, but less for prolonged dystonic episodes. Dystonia management was more often led by neurology, in contrast to clear evidence of joint working in patients with seizures. Medications differed for dystonia: palliative care promoted conservative measures and benzodiazepines, whereas clonidine hydrochloride and chloral hydrate were favoured by neurology. Paediatric palliative care is playing an increasing role in life-limiting and life-threatening neurological conditions. However, increased collaborative working is essential to ensure consistent patient-focussed management.
2017
Slater T; Laddie J; Hughes G; Lumsden DE
Developmental Medicine And Child Neurology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/dmcn.13622" target="_blank" rel="noreferrer">10.1111/dmcn.13622</a>
Hospice Use for Infants With Life-Threatening Health Conditions, 2007 to 2010
Pediatric Nurse Practitioners; Andersen model; California; Cardiovascular Diseases; complex chronic conditions; Congenital Abnormalities; end of life; hospice; Hospice Care/statistics & numerical data/ utilization; Humans; infant; Infants; Insurance Claim Review/statistics & numerical data; Length of Stay/economics/ statistics & numerical data; Medicaid; Medicaid/ statistics & numerical data; Nurse-Patient Relations; Nurse's Role; Palliative Care/statistics & numerical data/ utilization; Parents/ psychology; Professional-Family Relations; Respiratory Insufficiency; United States
BACKGROUND: Infant deaths account for a majority of all pediatric deaths. However, little is known about the factors that influence parents to use hospice care for their infant with a life-threatening health condition. METHODS: Data were used from 2007 to 2010 California Medicaid claims files (N = 207). Analyses included logistic and negative binomial multivariate regression models. RESULTS: More than 15% of infants enrolled in hospice care for an average of 5 days. Infant girls and infants with congenital anomalies were more likely to enroll in hospice care and to have longer stays. However, cardiovascular and respiratory conditions were negatively related to hospice enrollment and hospice length of stay. CONCLUSIONS: This study provides insights for nurses and other clinicians who care for infants and their families at end of life and suggests that nurses can assist families in identifying infant hospice providers who may help families understand their options for end-of-life care.
2017-01
Lindley LC; Newnam KM
Journal Of Pediatric Health Care
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedhc.2016.04.015" target="_blank" rel="noreferrer">10.1016/j.pedhc.2016.04.015</a>
Neonatal Hospital Course and Outcomes of Live-born Infants with Trisomy 18 at Two Tertiary Care Centers in the United States
Birth Weight; Patient Discharge; Artificial; Cardiotonic Agents/therapeutic use; Congenital/etiology; Female; gestational age; Heart Defects; Humans; infant; infant death; Intensive Care Units; Length of Stay; Live Birth; Male; Neonatal; Newborn; Perinatal Death; Respiration; Sex Factors; Survival Rate; Tertiary Care Centers; Trisomy 18 Syndrome/complications/ therapy; United States
Objectives Trisomy 18 is presumed to be a lethal chromosomal abnormality; medical management of infants with this aneuploidy is controversial. Our objective was to describe our approach and experience with trisomy 18 infants. Study Design We reviewed the initial hospital course, management, and factors predicting discharge from the hospital from two large tertiary care neonatal intensive care units in the southern United States over 26 years. Results Of the 29 infants with trisomy 18, 21 (72%) died in the hospital and 8 (28%) were discharged home. 19 (66%) infants received mechanical ventilation and 10 (34%) received inotropic medications. Eight infants had critical congenital heart defects; only one survived to discharge. Three infants underwent major surgeries; one cardiac surgery, one tracheoesophageal fistula repair, and one myelomeningocele repair. Median length of hospital stay was 14 days (range, 0-78) for all the infants and 31 days (range, 18-66) for those that were discharged home. Factors associated with discharge from the hospital were female sex, higher gestational age, and absence of critical congenital heart defects. Median survival time was 13 days and was significantly longer for females compared with males. Our 1-month and 1-year survival rates were 31% and 3.9% respectively. Conclusion A significant proportion of infants with trisomy 18 were discharged home. These data are helpful in counseling parents of infants with trisomy 18.
2017-02
Dereddy NR; Pivnick EK; Upadhyay K; Dhanireddy R; Talati AJ
American Journal Of Perinatology
2017
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1055/s-0036-1586753" target="_blank" rel="noreferrer">10.1055/s-0036-1586753</a>