Ethics Roundtable: How Much is Too Much?
Infant; Newborn; Humans; Infant; Premature Ectodermal Dysplasia Pylorus/abnormalities; Gastric Outlet Obstruction; Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; Life-limiting condition; Palliative Care
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a diagnosis of Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia). While the medical team felt that a do-not-resuscitate order and redirection to comfort care were appropriate, the family held on to hope for recovery and wished to continue with full intensive care measures.
Theodoro MF; Hays J; DiBartolomeo M; Carter B
American Journal of Hospice and Palliative Medicine
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/10499091221088829" target="_blank" rel="noreferrer noopener">10.1177/10499091221088829</a>
I feel like my house was taken away from me': Parents' experiences of having home adaptations for their medically complex, technology-dependent child
child; England; female; male; adult; human; Scotland; home care; Wales; patient care; article; controlled study; interview; preschool child; human experiment; wellbeing; conceptual framework; adolescent; thinking; decision making; father; mother; thematic analysis; heat; disabled person; chronic patient; biotechnology; regeneration
Technology-dependent children are a sub-population of seriously ill children with life-limiting conditions who are being cared for at home by their families. Although home-based care has been the model of care for these children since the late 1980s, there is a paucity of literature about parents' experiences of having home adaptations made to enable their home to be a place of care for their child. Using the findings from auto-driven photo-elicitation interviews conducted between August 2017 and June 2018 with 12 parents (10 mothers and 2 fathers) who have a technology-dependent child (aged 5-25years) living in England, Scotland and Wales and David Seamon's five concepts of at-homeness (appropriation, at-easeness, regeneration, rootedness and warmth) as a conceptual framework, this paper addresses how parents' experienced home adaptations. Thematic analysis generated a meta-theme of 'Home needs to be a home for all family members' and the three key themes: (1) 'You just get told' and 'you're not involved'; (2) It's just the 'cheapest', 'quickest', 'short-term' approach; (3) Having 'control' and 'thinking things through.' The need to involve parents in decision-making about adaptations that are made to their home (family-informed design) is clear, not only from a cost-saving perspective for the state, but for creating an aesthetic and functional home that optimises health, well-being and feelings of at-homeness for the entire family. Copyright © 2022 The Authors. Health and Social Care in the Community published by John Wiley & Sons Ltd.
Mitchell TK; Bray L; Blake L; Dickinson A; Carter B
Health and social care in the community
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/10.1111/hsc.13870" target="_blank" rel="noreferrer noopener">10.1111/hsc.13870</a>
"Communicating Lily's Pain": A reflective narrative commentary about co-creating a resource to provoke thinking and change about assessing and managing the pain of children with profound cognitive impairment
Children; Co-creation; Cognitive impairment; Narrative; Pain; Pediatrics
This paper draws together about 20 years of research work and discovery and the development of a resource about pain assessment and management in children with profound cognitive impairment. The animation tells the story of an imagined child called Lily and the skills her mother uses and the challenges that her mother faces in assessing and managing Lily's pain. The animation is built on stories drawn from qualitative research findings, conversations while in clinical practice and with members of the general public, parent advisers and other sources. Most of the "evidence" came from stories shared by parents and healthcare professionals. This paper draws on some elements of socio-narratology and is predicated on the basis that stories are important and they can act on and with us. By using an animation to tell Lily's story, the intention was to communicate research findings to a wider and more diverse audience than the typical readership of an academic journal. The intention was to act in and on people's consciousness about children's pain and to strengthen relationships and create bonds between clinicians, parents, and children in pain to make their dialog more social, connected, and meaningful. All three of us-the researcher, the writer, and the animator-have been marked and "re-shaped" by our work related to creating Lily; we have learned more about children like Lily and their mothers, and we have learned more about ourselves and our humanity. This animation is still a story in progress, a story 'in the wild', a story (and a resource) we would like you to re-tell and share. The story of Lily's pain aimed to change the lives of parents and children and professionals. Our hope is that you can be part of that change. Copyright © 2022 The Authors. Paediatric and Neonatal Pain published by John Wiley & Sons Ltd.
Carter B; Young R; Munro J
Paediatric and Neonatal Pain
2022
<a href="http://doi.org/10.1002/pne2.12074" target="_blank" rel="noreferrer noopener">10.1002/pne2.12074</a>
Experiencing Place Identity and Place Belongingness at a Children's Hospice: Parents' Perspectives
Child; Children’s hospice; Focus Groups; Hospice Care; Hospices; Palliative Care; parent perspective; Parents; place belongingness; place identity
Children's hospices are key players in the provision of palliative care services for families with children with life-limiting conditions (LLCs). However, evidence suggests that some of the negative terminology/language which surrounds the notions of palliative and hospice care may contribute to the lack of uptake of hospice services by families. This article reports two elements of place bonding: parents' experiences of place identity and place belongingness at a children's hospice in a region in England. Underpinned by a constructivist grounded theory methodology, focus groups were undertaken with 24 parents of children with LLCs accessing a children's hospice. Despite initial reservations associated with the identity of the hospice, parents described how and why their view changed and therefore consequently how they were able to experience the hospice differently. This article demonstrates how parents' views of the identity of the hospice change and how the hospice becomes a place where parents experience a sense of belongingness.
Dunbar H; Carter B
Journal of Child Health Care
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1367493520915134" target="_blank" rel="noreferrer noopener">10.1177/1367493520915134</a>
Healthcare professionals' experiences of the barriers and facilitators to paediatric pain management in the community at end-of-life: A qualitative interview study
Caregivers; palliative care; paediatrics; parents; qualitative research; pain management; end-of-life
CONTEXTS: Inadequate pain management in community paediatric palliative care is common. Evidence to inform improved pain management in this population is limited. OBJECTIVES: To explore the barriers and facilitators to paediatric community-based pain management for infants, children and young people at end-of-life as perceived by healthcare professionals. METHODS: A qualitative interview study was conducted. Semi-structured interviews were undertaken with 29 healthcare professionals; 12 nurses, five GPs, five consultants and registrar doctors, two pharmacists and five support therapists working in primary, secondary or tertiary care in the United Kingdom and involved in community end-of life care of 0-18-year-olds. RESULTS: The data corpus was analysed using an inductive thematic analysis and seven themes emerged: parents' abilities, beliefs and wellbeing; working relationships between families and healthcare professionals, and between healthcare teams; healthcare professionals' knowledge, education and experience; health services delivery; nature of pain treatment; and paediatric-specific factors. Across themes, the concepts of partnership working between families and healthcare professionals, and within healthcare teams, and sharing expertise were prevalent. CONCLUSION: Partnership working and trust between healthcare professionals and parents, and within healthcare teams, is needed for effective at-home paediatric palliative pain management. Community healthcare professionals require more education from experienced multidisciplinary teams to effectively manage paediatric pain at end-of-life and prevent emergency hospice or hospital admissions, particularly during the COVID-19 pandemic.
Greenfield DK; Carter B; Harrop DE; Jassal DS; Bayliss MJ; Renton DK; Holley DS; Howard DRF; Johnson MM; Liossi C
Journal of Pain and Symptom Management
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/10.1016/j.jpainsymman.2021.06.026" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2021.06.026</a>
Coming 'Home': Place bonding for parents accessing or considering hospice based respite
Children; Home; Hospice; Place bonding; Respite
Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming 'Home'. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could 'come home'.
Dunbar H; Carter B; Brown J
Health Place
2019
<a href="http://doi.org/10.1016/j.healthplace.2019.03.004" target="_blank" rel="noreferrer noopener">10.1016/j.healthplace.2019.03.004</a>
Research Priorities in Pediatric Palliative Care
Palliative Care; Parents/px [Psychology]; Humans; United States; Pediatrics; Delphi Technique; Attitude of Health Personnel; Research
OBJECTIVE: To synthesize the perspectives of a broad range of pediatric palliative care (PPC) clinicians and parents, to formulate a consensus on prioritization of the PPC research agenda. STUDY DESIGN: A 4-round modified Delphi online survey was administered to PPC experts and to parents of children who had received PPC. In round 1, research priorities were generated spontaneously. Rounds 2 and 3 then served as convergence rounds to synthesize priorities. In round 4, participants were asked to rank the research priorities that had reached at least 80% consensus. RESULTS: A total of 3093 concepts were spontaneously generated by 170 experts and 72 parents in round 1 (65.8% response rate [RR]). These concepts were thematically organized into 78 priorities and recirculated for round 2 ratings (n = 130; 53.7% RR). Round 3 achieved response stability, with 31 consensus priorities oscillating within 10% of the mode (n = 98; 75.4% RR). Round 4 resulted in consensus recognition of 20 research priorities, which were thematically grouped as decision making, care coordination, symptom management, quality improvement, and education. CONCLUSIONS: This modified Delphi survey used professional and parental consensus to identify preeminent PPC research priorities. Attentiveness to these priorities may help direct resources and efforts toward building a formative evidence base. Investigating PPC implementation approaches and outcomes can help improve the quality of care services for children and families.
Baker JN; Levine D R; Hinds PS; Weaver MS; Cunningham MJ; Johnson L; Anghelescu D; Mandrell B; Gibson DV; Jones B; Wolfe J; Feudtner C; Friebert S; Carter B; Kane J R
Journal of Pediatrics
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2015.05.002" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2015.05.002</a>
Why Are There So Few Ethics Consults in Children's Hospitals?
Children's hospitals;Clinical;Decision Making ethics;Ethicists psychology;Ethics;Ethics committee;Ethics consultation;Ethics Consultation utilization;Hospitals;Humans;Pediatric organization & administration;Pediatrics
In most children's hospitals, there are very few ethics consultations, even though there are many ethically complex cases. We hypothesize that the reason for this may be that hospitals develop different mechanisms to address ethical issues and that many of these mechanisms are closer in spirit to the goals of the pioneers of clinical ethics than is the mechanism of a formal ethics consultation. To show how this is true, we first review the history of collaboration between philosophers and physicians about clinical dilemmas. Then, as a case-study, we describe the different venues that have developed at one children's hospital to address ethical issues. At our hospital, there are nine different venues in which ethical issues are regularly and explicitly addressed. They are (1) ethics committee meetings, (2) Nursing Ethics Forum, (3) ethics Brown Bag workshops, (4) PICU ethics rounds, (5) Grand Rounds, (6) NICU Comprehensive Care Rounds, (7) Palliative Care Team (PaCT) case conferences, (8) multidisciplinary consults in Fetal Health Center, and (9) ethics consultations. In our hospital, ethics consults account for only a tiny percentage of ethics discussions. We suspect that most hospitals have multiple and varied venues for ethics discussions. We hope this case study will stimulate research in other hospitals analyzing the various ways in which ethicists and ethics committees can build an ethical environment in hospitals. Such research might suggest that ethicists need to develop a different set of "core competencies" than the ones that are needed to do ethics consultations. Instead, they should focus on their skills in creating multiple "moral spaces" in which regular and ongoing discussion of ethical issues would take place. A successful ethicist would empower everyone in the hospital to speak up about the values that they believe are central to respectful, collaborative practice and patient care. Such a role is closer to what the first hospital philosophers set out to do than in the role of the typical hospital ethics consultant today.
Carter B;Brockman M;Garrett J;Knackstedt A;Lantos J
HEC forum : an interdisciplinary journal on hospitals' ethical and legal issues
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/10.1007/s10730-017-9339-y" target="_blank" rel="noreferrer noopener">10.1007/s10730-017-9339-y</a>
Survey on Neonatal End-of-Life Comfort Care Guidelines Across America
anxiety; compassion fatigue; pediatrics; intensive care; comfort; palliative therapy; Canada; Infant; Newborn; Palliative Care; bodily secretions; newborn; satisfaction; institutional review; neonatologist; practice guideline; human; terminal care; article; pain; gastrointestinal symptom; geographic distribution; neonatal nurse practitioner; perinatal care
Context: Infants of age less than one year have the highest mortality rate in pediatrics. The American Academy of Pediatrics published guidelines for palliative care in 2013; however, significant variation persists among local protocols addressing neonatal comfort care at the end-of-life (EOL). Objectives: The purpose of this study was to evaluate current neonatal EOL comfort care practices and clinician satisfaction across America. Methods: After institutional review board approval (516005), an anonymous, electronic survey was sent to members of the American Academy of Pediatrics Section on Neonatal-Perinatal Medicine. Members of the listserv include neonatologists, neonatal fellow physicians, neonatal nurses, and neonatal nurse practitioners from across America (U.S. and Canada). Results: There were 346/3000 (11.5%) responses with wide geographic distribution and high levels of intensive care responding (46.1% Level IV, 50.9% Level III, 3.0% Level II). Nearly half (45.2%) reported that their primary institution did not have neonatal comfort care guidelines. Of those reporting institutional neonatal comfort care guidelines, 19.1% do not address pain symptom management. Most guidelines also do not address gastrointestinal distress, anxiety, or secretions. Thirty-nine percent of respondents stated that their institution did not address physician compassion fatigue. Overall, 91.8% of respondents felt that their institution would benefit from further education/training in neonatal EOL care. Conclusion: Across America, respondents confirmed significant variation and verified many institutions do not formally address neonatal EOL comfort care. Institutions with guidelines commonly appear to lack crucial areas of palliative care including patient symptom management and provider compassion fatigue. The overwhelming majority of respondents felt that their institutions would benefit from further neonatal EOL care training.
Haug S; Farooqi S; Wilson CG; Hopper A; Oei G; Carter B
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.2017.10.023" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.10.023</a>
Hearing others' perspectives when we hear, "do everything!"
2015-05
Hirni K; Carter B
Jama Pediatrics
2015
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1001/jamapediatrics.2014.3699" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2014.3699</a>
Tick box for child? The ethical positioning of children as vulnerable, researchers as barbarians and reviewers as overly cautious
2009
Carter B
International Journal Of Nursing Studies
2009
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.ijnurstu.2009.01.003" target="_blank" rel="noreferrer">10.1016/j.ijnurstu.2009.01.003</a>
Creation of a neonatal end-of-life palliative care protocol
Humans; infant; United States; Questionnaires; Professional-Family Relations; Euthanasia; Clinical Protocols; Delphi Technique; Counseling; Internet; Tissue and Organ Procurement; Non-U.S. Gov't; Research Support; Newborn; empathy; Palliative Care/standards; social support; Terminal Care/standards; Culture; Family/ethnology/psychology; Neonatology/standards; Passive/psychology; Ventilator Weaning
OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological support. STUDY DESIGN: Using Internet e-mail, a Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build a consensus document. Institutional review was granted and respondents gave consent. Recruitment was conducted at medical, ethics, nursing, and multidisciplinary organization meetings. Synthesis of 16 palliative care/end-of-life protocols developed by regional, institutional, and parent organizations was included. Participants from 93 locations in the US and 4 abroad gave feedback to 13 questions derived from clinical experience and the literature. The data underwent four rounds of analysis with 95% retention of the 101 participants over an 18-month period. RESULTS/CONCLUSION: Specific consensus-based recommendations are presented with a description of palliative care; categories of candidates; planning and education needed to begin palliative care services; relationships between community and tertiary centers; components of optimally supported neonatal death; family care, including cultural, spiritual, and practical needs; ventilator withdrawal, including pain and symptom management; recommendations when death does not occur after cessation of life-extending interventions; family follow-up care; and necessary ongoing staff support.
2002
Catlin A; Carter B
Journal Of Perinatology
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">10.1038/sj.jp.7210687</a>
Dealing with uncertainty: parental assessment of pain in their children with profound special needs
2002
Carter B; McArthur E; Cunliffe Mary
Journal Of Advanced Nursing
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1046/j.1365-2648.2002.02206.x" target="_blank" rel="noreferrer">10.1046/j.1365-2648.2002.02206.x</a>