Entrer dans un service de réanimation pédiatrique, c'est aller "dedans". Là-bas, on est dedans ou dehors, pas de nuance, pas d'entre-deux... a priori. De l'extérieur, les événements peuvent paraître tranchés, les décisions assurées. On parle en termes de réussite oou d'échec, de vie ou de mort.
Background: Rural pediatricians and adult-trained hospice teams report feeling ill-prepared to care for children at end of life, resulting in geographies in which children are not able to access home-based services.
Objectives: To develop a pediatric palliative care curriculum for inpatient nurses and adult-trained hospice teams caring for children in a rural region.
Methods: Curriculum design and delivery was informed by local culture through an interdisciplinary, iterative development approach with confidence, intention, and support measured pre-, post-, and 4 months after delivery. A needs assessment was completed by pediatric nurses caring for children receiving palliative or end-of-life care to inform curricular content (phase 1). A curriculum was designed by an interdisciplinary pediatric palliative care team and piloted with nursing cohorts annually through educational conferences with monthly discussion series for 3 consecutive years (phase 2). Curricular content was then provided for 31 rural hospice team members (phase 3).
Results: Self-reported confidence in caring for children increased by 1.1/10 points for adult-trained hospice team members. Mean score for intention to care for children increased by 5.2 points (sustained 5.1 points above baseline at 4 months). Perception of support in caring for children increased by 5 points (mean sustained 5.4 points above baseline at 4 months). Family needs, care goals, and symptom management were prioritized learning topics. Rural hospices previously unwilling to accept children enrolled pediatric patients in the 4 months following the conference.
Conclusion: Grassroots curricular initiatives and ongoing educational mentorship can grow pediatric palliative and hospice services in rural regions.
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty.
AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings.
METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items.
FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism.
CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
BACKGROUND: Many palliative care health settings that care for children and young people (CYP) at the end of life use the buccal mucosa as a route of drug administration to manage the sudden onset of symptoms, such as seizures, agitation and dyspnoea, and for breakthrough pain management. The buccal route is a minimally invasive method that delivers fast symptom relief and is useful for those with swallowing impairment or reduced enteral absorption.
AIM: This paper reports on a small retrospective study involving 26 CYP who received end-of-life care between January and December 2017 to review the advantages and disadvantages of using buccal opioids for breakthrough pain relief with a focus on diamorphine as the preferred opioid.
METHOD: A retrospective case note review.
FINDINGS: This paper shares the clinical practice experiences from one UK organisation of care for CYP at the end of their lives and contributes to the growing body of pharmacological evidence.
CONCLUSION: Buccal opioids, specifically buccal diamorphine, are an effective strategy to treat breakthrough pain or dyspnoea in CYP.
AIM: Evaluation of pediatric palliative home care of families with children suffering from neurodegeneration with brain iron accumulation (NBIA) and their parents.
MATERIAL AND METHODS: The children were treated at home by a multidisciplinary team. Densitometry was used to evaluate the condition of the skeletal system. Botulinum toxin was injected into the muscles in doses between 22 and 50 units/kg. The quality of palliative care was assessed on the basis of a specially designed questionnaire for parents.
RESULTS: The observations were performed on a group of 9 patients with NBIA. On admission, the median age of patients was 9 years (7-14). The average time of palliative home care was 1569 days (34 days-17 years). The median age at death (6 patients) was 11 years (7-15). The botulinum toxin injections gave the following results: reduction of spasticity and dystonia, reduction of spine and chest deformation, relief of pain and suffering, facilitation of rehabilitation and nursing, prevention of permanent contractures, and reduction of excessive salivation. Bone mineral density and bone strength index were reduced. Two patients experienced pathological fracture of the femur. The body mass index at admission varied between 9.8 and 14.9. In 7 cases, introduction of a ketogenic diet resulted in the increase of body mass and height. The ketogenic diet did not worsen the neurological symptoms. The parents positively evaluated the quality of care.
CONCLUSION: Palliative home care is the optimal form of treatment for children with NBIA.
BACKGROUND: Effective communication is a cornerstone of quality paediatric palliative care. Families report struggling, however, to know what to discuss, with whom, and when. Although question prompt lists exist for adult palliative care, they do not suit the unique circumstances of paediatric palliative care.
AIM: To develop a prompt list suitable for paediatric palliative care.
DESIGN: Underpinned by Delphi methodology, a six-phase procedure was adopted: (1) drafting items based on the findings of a literature review, (2) condensing the list of items based on group discussion, (3) refining items based on a survey of expert healthcare professionals, (4) additional refining of items based on another survey of professionals, (5) further refining of items based on cognitive interviews with family members, and (6) final review by healthcare professional and family member groups.
PARTICIPANTS: Three participant groups were involved during various phases: (1) members of an Australasian paediatric palliative care national reference group, (2) healthcare professionals associated with a local paediatric palliative care service, and (3) family members who were users of the same local service.
RESULTS: Through multi-phase consultation across participant groups, the draft question prompt list was refined progressively to 28 items, split across two booklets to allow end-of-life items to be provided separately, and reconceptualised as a discussion prompt list rather than a question prompt list.
CONCLUSION: By involving representatives of major stakeholder groups, this study has facilitated the design of a prompt list suited to the circumstances of paediatric palliative care. Future research should trial the effectiveness of this resource.
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.
Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.
Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.
Setting/Subjects: we interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.
Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.
Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
Palliative care as a foundation for patient-centered care is not adequately covered in nursing curricula. This gap in education means that pediatric oncology nurses may lack necessary palliative care competencies to provide comprehensive care to patients. A literature review was performed to determine if nurses believe that they are prepared to provide clinical palliative care to pediatric patients and how pediatric palliative care best practices can be better integrated into nursing education programs. According to the literature review, studies suggest that providing pediatric palliative care education in nursing programs can build nurses' confidence and better prepare them to competently care for patients and families.
BACKGROUND: Total Anomalous Pulmonary Venous Connection (TAPVC) is a rare heterogeneous condition That accounting for 1.5-3% of congenital heart diseases. It is characterized by failure of the Pulmonary Venous Confluence (PVC) to be directly connected to the left atrium in combination with a persistent splanchnic connection to the systemic venous circulation. The most critical status occurs when it is accompanied by pulmonary venous obstruction. Managing of this situation is very difficult and in fact, pulmonary venous obstruction is usually lethal. The real aim of this study is offering a new palliative surgical technique (Sarmast - Takriti Shunt) in order to alleviate the patient's signs and symptoms until becomes ready for the main surgical correction.
CASE PRESENTATION: The study included a 4-day old, low birth weight boy who suffered from Critical Obstructive Total Anomalous Pulmonary Venous Connection. The decision was made to perform the new palliative technique using Gore - Tex (ePTFE). Anastomosis was established without Cardiopulmonary Bypass (CPB) between Pulmonary Venous Confluence (PVC) and the left atrial appendage. Therefore the Sarmast - Takriti Shunt (STS) was taken place.
CONCLUSION: After completion of the procedure, the pressure gradient across the venous confluence and the Left innominate vein became zero. Cyanosis, agitation and feeding Problem subsided. Three days later, when he was discharged, arterial oxygen saturation had reached as high as 91%. After 7 months we perfomed the main correction.
Interventional Oncology (IO) represents an evolution of powerful minimally invasive therapeutic procedures within the discipline of interventional radiology, driven inlarge part by rapid technological innovation. In modern medical centers, IO is established as the“fourth pillar”of multi-disciplinary oncologic care, alongside oncology, surgery, andradiation oncology.
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Children with single ventricle congenital heart defects (SVCHD) experience a significant risk of early mortality throughout their lifespan, particularly during their first year of life. Due to the intense care needed for these children and families, pediatric palliative care (PPC) team consults should be routine; however, medical staff are often reluctant to broach the idea of PPC to families. The involvement of PPC for many carries with it an association to end-of-life (EOL) care. Setting the standard of PPC involvement from the time of admission for the first palliative surgery led to increased family support, decreased days to consult, improved acceptance and communication. The purpose of this article is to describe a quality improvement project of early integration of PPC with families of children with SVCHD. Lessons learned will be presented, including the resources needed and the barriers encountered in assimilating PPC into the standard of care for all patients with SVCHD. The single ventricle (SV) and PPC teams collaborated to enhance the support given to SV families. Education was initiated with cardiology and PPC providers to understand the goal of consistent PPC consults beginning after birth for patients with SVCHD. Parents were educated during fetal consultation regarding the involvement of the PPC team. The SV team ensured compliance with the PPC initiative by identifying eligible patients and requesting consult orders from the primary providers. PPC consultation increased significantly over the 40 month study period to nearly 100% compliance for children with SVCHD who are undergoing pre-Fontan surgery. In addition, mean days to consult decreased dramatically during the study to a current average of 3 days into the patient's hospitalization; the data likely suggest that more PPC consults were routinely ordered versus urgently placed for unexpected complications. Data indicate that patients are being followed by the PPC team at an earlier age and stage in their SV journey which allows for more opportunity to provide meaningful support to these patients and families. The early involvement of the PPC team for children with SV physiology was operationally feasible and was accepted by families, thus allowing PPC providers to establish a therapeutic relationship early in the disease trajectory with the family. It allowed more continuity throughout the SV journey in a proactive fashion rather than a reactive manner.
Les soins palliatifs pédiatriques émergent au début des années 2000 dans les pays francophones, sous l’impulsion conjointe de professionnels et de parents. Alors que les soins palliatifs adultes, apparus une vingtaine d’années plus tôt, proposent la création d’unités de soins palliatifs, l’enjeu pour les soins palliatifs pédiatriques est de s’intégrer à une pratique pédiatrique qui a toujours pensé la prise en charge de l’enfant de façon globale, inscrit dans sa cellule familiale, du diagnostic au terme de son existence, excluant par là-même l’éventualité d’en confier la responsabilité à des tiers en fin de vie.
Courts in England and Wales, Australia, and New Zealand have insisted the question of when it is acceptable to withdraw or withhold life-sustaining medical treatment from a child must be considered on a case-by-case basis. Over the last 40 years a number of cases have considered whether treatment is objectively in the child's best interests. This article seeks to identify whether there are factors identified and weighed in a consistent manner across cases. Thirty cases involving decisions about the provision of life-sustaining medical treatment to children three years old or younger were identified. Judges regularly refer to the need to weigh benefits and burdens and these factors were identified and assigned scores. Eight key factors were identified, and a scoring range was assigned to each. The factors focus on the condition and position of the child and the burdens of invasive medical treatment. The review demonstrates there are factors consistently identified and despite criticisms of the indeterminacy of the best interests test, there may be a broadly consistent approach to decision-making. Cognitive capacity and unavoidably imminent death appear to be the two most influential factors in determining whether life-sustaining treatment should be provided.
BACKGROUND: Bleeding occurs with some regularity at the end of life. Patients often endure fatigue, weakness, pain, dyspnea and anxiety. These symptoms are magnified in visually apparent bleeds. Management can be particularly challenging as we attempt to balance therapies with goals of care. Children are at risk for such complications and symptoms; providers must ensure comfort for both the patient and family.
CASE DESCRIPTION: A 7-year-old male with recurrent, refractory Burkitt lymphoma was frequently hospitalized for palliative chemotherapy and disease complications. On his final admission, he experienced gross hemoptysis and hematemesis: he was short of breath, fatigued and anxious due to his blood loss. His and his family's angst were heightened by "seeing" his bleed. Potential, especially invasive, treatments were limited by our goals to promote comfort, limit interventions, maintain alertness, poor intravenous access and a small bowel obstruction. Nebulized vasopressin, 10 units in 4ml of normal saline given over 10 minutes provided JC with needed relief. His bleeding remitted and he tolerated its administration.
CONCLUSION: There are many treatments for hemorrhage; however, given the challenges of goals of care, administration, side-effects and tolerability, further investigation into nebulized vasopressin as a potential therapy for hemoptysis and hematemesis at the end-of-life is warranted.
BACKGROUND: Research ethics committees are commonly perceived as a 'barrier' to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown.
AIM: The aim of this study was to explore committees' concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom.
DESIGN: Content analysis of committee meeting minutes, decision letters and researcher response letters.
SETTING/PARTICIPANTS: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents.
RESULTS: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved.
CONCLUSION: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.
BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families.
AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families.
DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis.
SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted.
RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects.
CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.
BACKGROUND: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented.
AIM: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI.
METHODS: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis.
RESULTS: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible.
CONCLUSION: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.
Objective: The aim of this study was to describe end-of-life (EOL) milieu among caregivers of children who died in the hospital and to compare their psychosocial, spiritual, and financial concerns with caregivers of children who survived.
Materials and Methods: Sixty caregivers of children (30 survivors and 30 nonsurvivors), admitted in the pediatric intensive care unit and general pediatric unit, were recruited over a period of 1 year. Mixed qualitative methods were used to collect information from parents on EOL care perspectives.
Results: Demographic, disease, and treatment-related characteristics were not significantly different between nonsurvivor and survivor groups. The caregivers of nonsurvivors versus survivors showed no significant differences as regards optimal care (76.67% vs. 56.67%), social support (76.6% vs. 66.67%), and frequent recitation of scriptures (30.77% vs. 45.83%). Mean medical expenditure among children receiving EOL care was Rs. 40,883 (range: Rs. 800-5 lakhs). Regression results revealed that for every 1 day of increase in hospital stay, cost of hospitalization for dying children increased by Rs. 3000 (P = 0.0001). Medical insurance was reported by only minority of the cases (5%). Several themes emerged in the focus group discussions with care providers which highlighted the importance of communication and need for emotional, social, and financial support. EOL decision was taken in only two of the nonsurviving children.
Conclusions: The study offers useful insight about social, financial, and religious "end-of-life" needs among terminally sick children and thereby sensitizes the health-care providers to optimize their care at this niche period.
Ce livre regroupe l'ensemble des informations nécessaires à la pratique des soins palliatifs pédiatriques : cadre réglementaire, concepts théoriques et projet de soin. Ayant pour fil conducteur les questions auxquelles le praticien et les équipes sont confrontés au quotidien, l'ouvrage prend en compte les interactions pluridisciplinaires.