scholarly journals Advances and Challenges in European Paediatric Palliative Care

2020 ◽  
Vol 8 (2) ◽  
pp. 20
Author(s):  
Lorna K Fraser ◽  
Myra Bluebond-Langner ◽  
Julie Ling
Keyword(s):  
Palliative Care ◽  
Epidemiological Data ◽  
Childhood Mortality ◽  
Quality Data ◽  
High Quality Data ◽  
Medical Interventions ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Definition Of ◽  
Limiting Condition

Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children’s palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children’s palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.

Analysis of health administration data to inform health service planning for paediatric palliative care

2020 ◽  
pp. bmjspcare-2020-002449
Author(s):  
Alison Pauline Bowers ◽  
Natalie Bradford ◽  
Raymond Javan Chan ◽  
Anthony Herbert ◽  
Patsy Yates
Keyword(s):  
Palliative Care ◽  
Health Service ◽  
Health Services ◽  
Hospital Admissions ◽  
Demographic Characteristics ◽  
Service Planning ◽  
Service Usage ◽  
Paediatric Palliative Care ◽  
Icd 10 ◽  
Limiting Condition

BackgroundHealth service planning in paediatric palliative care is complex, with the diverse geographical and demographic characteristics adding to the challenge of developing services across different nations. Accurate and reliable data are essential to inform effective, efficient and equitable health services.AimTo quantify health service usage by children and young people aged 0–21 years with a life-limiting condition admitted to hospital and health service facilities in Queensland, Australia during the 2011 and 2016 calendar years, and describe the clinical and demographic characteristics associated with health services usage.DesignRetrospective health administrative data linkage of clinical and demographic information with hospital admissions was extracted using International Statistical Classification of Diseases and Related Health Problems, Tenth Revision Australian Modification (ICD-10-AM) diagnostic codes. Data were analysed using descriptive statistics.Setting/participantsIndividuals aged 0–21 years with a life-limiting condition admitted to a Queensland Public Hospital and Health Service or private hospital.ResultsHospital admissions increased from 17 955 in 2011 to 23 273 in 2016, an increase of 5318 (29.6%). The greatest percentage increase in admissions were for those aged 16–18 years (58.1%, n=1050), and those with non-oncological conditions (36.2%, n=4256). The greatest number of admissions by ICD-10-AM chapter for 2011 and 2016 were by individuals with neoplasms (6174, 34.4% and 7206, 31.0% respectively). Overall, the number of admissions by Indigenous children and young people increased by 70.2% (n=838).ConclusionsAdministrative data are useful to describe clinical and demographic characteristics and quantify health service usage. Available data suggest a growing demand for health services by children eligible for palliative care that will require an appropriate response from health service planners.

History and epidemiology

2021 ◽  
pp. 3-16
Author(s):  
Lorna Fraser ◽  
Stephen Connor ◽  
Joan Marston
Keyword(s):  
Palliative Care ◽  
Child Mortality ◽  
Marked Reduction ◽  
Epidemiological Data ◽  
National Data ◽  
Middle Income ◽  
Life Threatening ◽  
History Of ◽  
Low And Middle Income

There has been a marked reduction in child mortality in the last few decades but there were still 6.6 million deaths in children aged 0–14 years worldwide in 2016. The vast majority of those deaths (5.6 million) occurred in children aged under 5 years and 98% of these deaths occurred in the low- and middle-income (LMCI) countries. After a brief history of the development of children’s palliative care (CPC) and key definitions, this chapter summarizes the epidemiological data on mortality and prevalence of life-limiting (LLC) and life-threatening conditions (LTC). This chapter also highlights the gaps in these data and concludes with advice on how to use local, regional, and national data to plan services.

Affording opportunities to discuss deterioration in paediatric palliative care consultations: a conversation analytic study

2017 ◽  
Vol 10 (2) ◽  
pp. e13-e13 ◽  
Author(s):  
Stuart Ekberg ◽  
Susan Danby ◽  
Anthony Herbert ◽  
Natalie K Bradford ◽  
Patsy Yates
Keyword(s):  
Palliative Care ◽  
Care Service ◽  
Palliative Care Service ◽  
Self Report ◽  
Palliative Care Specialist ◽  
Communicative Practices ◽  
Paediatric Palliative Care ◽  
Care Specialist ◽  
Self Report Data ◽  
Limiting Condition

ObjectiveDiscussing the potential deterioration of a child who has a life-limiting condition has recognised benefits for future care, but can be challenging in a clinical context where uncertain illness trajectories are common. Existing research is restricted to indirect forms of evidence such as self-report data from clinicians and families. This study directly explores how discussions about deterioration are managed within actual paediatric palliative care consultations.Methods9 consultations were video recorded in an Australian paediatric palliative care service. Each consultation involved the same paediatric palliative care specialist. Conversation analysis was used to identify and explore recurrent ways in which discussions about deterioration came to be realised.FindingsThe study identified two communicative practices used by a paediatric palliative care specialist that afforded opportunities to discuss deterioration: (1) soliciting the family's agenda for the consultation; (2) initiating and maintaining topics where discussing deterioration is a relevant possibility. Across these different practices, a common feature was indirect initiation of discussions about deterioration. This approach made such discussions possible, but without mandating or even suggesting that such discussion must occur.ConclusionsThese communicative practices balance the benefit of discussing deterioration against a recognised importance of allowing discussions to be directed by a child's family. This was achieved by creating opportunities for discussing deterioration, without making such discussions necessary.

scholarly journals Article Commentary: Pediatric Palliative Care: A Reflection on Terminology

2013 ◽  
Vol 7 ◽  
pp. PCRT.S12800 ◽  
Author(s):  
Eva Bergstraesser
Keyword(s):  
Palliative Care ◽  
Supportive Care ◽  
Pediatric Palliative Care ◽  
Life Threatening ◽  
Definition Of ◽  
Medical Subspecialty

The definition of palliative care is the cornerstone of a medical subspecialty that plays a particular role for all who need it, for all who practice it, and increasingly for those who try to understand it. The difficulties around the definition and terminology arise from problems in separating it from other concepts such as supportive care, constructs such as “palliative care is only about dying”, or, in children, the rather vague use of terms like life-threatening and life-limiting diseases. These weaknesses have been recognized and important steps have been taken. This review discusses current definitions as well as efforts to overcome their weaknesses and make the term palliative care—for both children and adults—more intelligible.

scholarly journals “Should I Be Continued Breathing?”: Management of Life Limiting Condition from Islamic Ethical Perspective

2020 ◽  
Vol 12 (4) ◽  
pp. 47-51
Author(s):  
Siti Nur Haidar Hazlan ◽  
Nur Aishah Mazlan ◽  
Farah Syazana Kabir Ahmad ◽  
Fahisham Taib
Keyword(s):  
Palliative Care ◽  
Treatment Outcome ◽  
Medical Ethics ◽  
Spinal Muscular Atrophy ◽  
Medical Technology ◽  
Muscular Atrophy ◽  
Limited Resources ◽  
Ethical Perspective ◽  
Paediatric Palliative Care ◽  
Limiting Condition

Spinal muscular atrophy (SMA) is one of the most recognised life-limiting conditions in paediatric palliative care. Despite the advancement of medical technology, many children with severe SMA die early. Often, managing physicians are trapped in dilemma whether to go all-out treating these patients or to be more conservative using palliative approach, knowing our limited resources and the futility of the treatment outcome. This article discusses the challenging aspect of managing these patients by using Islamic medical ethics to resolve this dilemma.

Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes

2020 ◽  
Vol 34 (3) ◽  
pp. 358-366 ◽  
Author(s):  
Anna Collins ◽  
Jodie Burchell ◽  
Cheryl Remedios ◽  
Kristina Thomas
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Psychological Distress ◽  
Unmet Needs ◽  
Support Needs ◽  
Cross Sectional ◽  
Paediatric Palliative Care ◽  
Practical Support ◽  
Limiting Condition

Background: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. Aim: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. Design: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. Setting/participants: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). Results: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life ( r = –.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. Conclusions: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents

2021 ◽  
pp. bmjspcare-2020-002576
Author(s):  
Dania Schütze ◽  
Fabian Engler ◽  
Cornelia Ploeger ◽  
Lisa-R Ulrich ◽  
Michaela Hach ◽  
...  
Keyword(s):  
Palliative Care ◽  
Psychosocial Support ◽  
Federal State ◽  
Theory Approach ◽  
Care Providers ◽  
Narrative Interviews ◽  
Complex Needs ◽  
Paediatric Palliative Care ◽  
Intermittent Care ◽  
Limiting Condition

ObjectiveIn Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents’ experiences and their demands of collaboration with SOPPC teams.MethodsWe conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data.ResultsParents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents’ need for specialised professional assistance and their simultaneous empowerment by SOPPC teams.ConclusionsParents’ perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.

Care of children with advanced illness

2021 ◽  
pp. 1035-1045
Author(s):  
Myra Bluebond-Langner ◽  
Richard W. Langner ◽  
Ignasi Clemente
Keyword(s):  
Decision Making ◽  
Palliative Care ◽  
Advanced Illness ◽  
Illness Trajectory ◽  
Paediatric Palliative Care ◽  
Life Threatening ◽  
Decision Making Processes ◽  
Care And Treatment ◽  
Parent Child

Based on the holistic, family-centred approach of paediatric palliative care, this chapter examines specific aspects of the clinician, parent, and child roles in the care and treatment of children and young persons with life-limiting conditions and life-threatening illnesses. In particular, it identifies communication, information, decision-making, and participation preferences of children and young persons with advanced illness and their parents. Within the clinician–parent–child triad, the chapter sets forward suggestions for clinicians on how to manage differences between a child and his or her parents, and more generally, on how to approach the communication and decision-making processes throughout a child’s or young person’s illness trajectory.

Paediatric palliative care

2019 ◽  
pp. 477-536
Keyword(s):  
Palliative Care ◽  
Patient Population ◽  
Palliative Medicine ◽  
Survival Rates ◽  
Care Needs ◽  
Paediatric Palliative Care ◽  
Adult World ◽  
Life Threatening ◽  
Palliative Care Needs

This chapter describes the emergence of the field of paediatric palliative care. It looks at the differences between children’s palliative care and the adult world. It goes on to discuss the management of various symptoms looking particularly at the pharmacological approaches that can be used. All dosages are aligned with the Association of Paediatric Palliative Medicine formulary guidelines. Advances in the treatment of life-threatening neonatal and paediatric conditions have dramatically improved survival rates over recent years. One of the most striking reductions in mortality has been achieved for children with malignant conditions, although there remain certain forms of cancer for which the prognosis remains extremely poor. Similarly, despite advances, there is a range of non-malignant conditions which continue to be life-limiting. The patient population in paediatric palliative care is quite different from that encountered in adult practice. Approximately 25–30% of children with palliative care needs have a malignancy.

scholarly journals A Retrospective Review of Resuscitation Planning at a Children’s Hospital

2017 ◽  
Author(s):  
Jean Kelly ◽  
Jo Ritchie ◽  
Leigh Donovan ◽  
Carol Graham ◽  
Anthony Herbert
Keyword(s):  
Retrospective Review ◽  
Medical Records ◽  
Time Interval ◽  
Professional Collaboration ◽  
Clinical Indicator ◽  
Paediatric Palliative Care ◽  
Centered Care ◽  
Life Threatening ◽  
Limiting Condition ◽  
Family Centered

Resuscitation plans (RP) are an important clinical indicator relating to care at the end of life in pediatrics. A retrospective review of the medical records of children who had been referred to the Royal Children&rsquo;s Hospital, Brisbane, Australia who died in the calendar year 2011 was performed. Of 62 records available, 40 patients (65%) had a life limiting condition and 43 medical records (69%) contained a documented (RP). This study demonstrated that both the underlying condition (life-limiting or life-threatening) and the setting of care (PICU or home) influenced the development of resuscitation plans. Patients referred to the paediatric palliative care (PPC) service had a significantly longer time interval from documentation of a resuscitation plan to death and were more likely to die at home. All of the patients who died in the paediatric intensive care unit (PICU) had a RP which was documented within the last 48 hours of life. Most RPs were not easy to locate. Documentation of discussions related to resuscitation planning should accommodate patient and family centered care based on individual needs. With varied diagnoses and settings of care, it is important that there is inter-professional collaboration (particularly involving PICU and PPC services) in developing protocols of how to manage this difficult but inevitable clinical scenario.

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