A Framework for Providing Quality Pediatric Palliative Care

BackgroundFor children with life-limiting conditions home care is a key component of pediatric palliative care. However, poor information is available on service coverage and in particular on country-specific pediatric palliative home care characteristics. The aim of the study was therefore to describe the association between pediatric palliative care coverage and national activities and obtain detailed information on the pediatric palliative home care structure in different European countries.MethodsOnline survey with in-country experts from N = 33 European countries.ResultsPediatric palliative home care (65.6%) represented the most pediatric palliative care units (15.6%) and the least common services. National documents constituted the most widespread national pediatric palliative care activity (59.4%) and were associated with available services. Pediatric palliative home care could be mostly accessed as a service free of charge to families (95.2%) from the time of a child's diagnosis (85.7%). In most countries, oncological and non-oncological patients were cared for in pediatric palliative home care. Only a minority of home care teams covered home-ventilated children. Pediatric palliative home care usually comprised medical care (81.0%), care coordination (71.4%), nursing care (75.0%) and social support (57.1%). Most countries had at least two professional groups working in home care teams (81.0%), mostly physicians and nurses. In many countries, pediatric palliative home care was not available in all regions and did not offer a 24 h-outreach service.ConclusionsPediatric palliative care provision in Europe is heterogeneous. Further work on country-specific structures is needed.

The integration of pediatric palliative care (PPC) should become a standard of care for all children with life-limiting and life-threatening illnesses. There are many barriers and misperceptions in pediatrics which hinder the early implementation of PPC. The aim of the study was to design starting points for the establishment of accessible PPC with early involvement of patients in a tertiary-level children’s hospital. An intervention, presentation, and discussion on PPC were offered by the hospital PPC team to all employees in the hospital. A total of 237 participants (physicians 30.4%, nurses 49.4%, psychologists 8.4%, and others) completed a questionnaire before and after the intervention. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. The results were analyzed using Pandas and SciPy libraries in Python. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. However, the self-assessment of their ability to perform PPC did not increase. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC.Conclusions: More education and practical work tailored to the different professional profiles are needed, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.What is Known:• Every child and adolescent living with a life-limiting or life-threatening condition should receive pediatric palliative care (PPC) to alleviate suffering and enhance their quality of life. There exists a plethora of recognized barriers to the effective implementation of palliative care, specifically PPC. These barriers are often connected to the emotional burden of requesting PPC. Early identification and inclusion of patients is important for improving PPC in hospital settings. Finding strategies to overcome the barriers is crucial for improving the well-being and improving the quality of life of the patients and their families.• Early identification is only possible with a high level of knowledge and understanding of PPC among healthcare professionals. In a hospital setting where there are interdisciplinary palliative care teams, the inclusion is still only possible if all staff are capable of recognizing patients in need of PPC and are willing to start the process. Since most healthcare education systems only recently included PC into the healthcare curriculum, most of the professionals currently working in hospitals are only educated to the extent of self-initiative.What is New:• To bridge the existing gap in knowledge, the hospital PC team organized an intervention, presentation, and discussion on PPC, which was offered to all employees in the hospital who are in contact with patients. The personnel’s knowledge, self-assessment of their ability to perform PPC, attitude to participate in PPC, and their awareness and understanding of the need for PPC were evaluated. These four categories have not been tested together before. The knowledge, awareness, and attitude of the physicians, nurses, and other professionals improved significantly after the intervention. All the profiles that work together in a team were evaluated simultaneously for the first time.• The self-assessment of their ability to perform PPC did not increase—in fact, it decreased. This was unexpected, as existing literature establishes a link between education and quality of PC. Previous experience with the death of a patient has proven to be a stimulus for self-initiative in acquiring knowledge in PPC and was linked with a better attitude and higher awareness of the need for PPC. We re-established the importance of education and practical work tailored to the different professional profiles, with adjustments for specific subspecialist areas, especially where patients could be included in early PPC. Although additional studies are needed, we identified the main directions for the further implementation of PPC in clinical practice in our setting.

Economic adversity during the last decade has eroded earlier positive developments in pediatric palliative care in Zimbabwe. A dire shortage of skilled palliative care practitioners coupled with increasing demands on health services to manage the problems associated with a high prevalence of HIV/AIDS have resulted in the burden of care being carried mostly by the community and family, and a handful of organisations practising palliative care. Home based care organisations using volunteer community caregivers are increasingly expected to provide elements of palliative care, having received only basic training. The advent of anti retroviral therapy (ART) has significantly extended quality and length of life for many and has special relevance for children living with HIV. However, for those who are unable to access this treatment, and for many who are on treatment, the need for pediatric palliative care remains important for the relief of suffering. Avoidance of talking to children about living with a life limiting illness continues and is perhaps exacerbated by a focus on living positively in the era of ART. Palliative care services for children struggle to provide the full range of holistic care citing problems of time, privacy and a limited multi disciplinary approach due to a shortage of relevant professionals and a lack of co-ordination. The potential for scaling up pediatric palliative care in Zimbabwe is enormous but will depend largely on human resource capacity.

Pediatric palliative care is a holistic care of children suffering from life-threatening or life-limiting illnesses and encompasses care of a child’s body, mind, and spirit and involves giving support to the family. According to the Global Atlas of Palliative Care, 6% of the global need for palliative care is in children. In order to provide palliative care, one needs to identify and diagnose the conditions requiring palliative care. There has always been a confusion in identifying pediatric conditions requiring palliative care. There is a lot of inconsistency in the diagnosis of such conditions particularly in pre-verbal patients. This study attempts to generate more data about the common palliative care conditions and complaints with which the children present to tertiary care hospitals. To study the socio-demographic details, clinical profile, CCC (complex chronic conditions) designation, and the ACT/ RCPCH (Association for Children with Life-threatening or Terminal Conditions and the Royal College of Pediatrics and Child Health) classification of children suffering from chronic conditions requiring palliative care. The study was conducted as a single-center retrospective observational study of pediatric patients enrolled for palliative care at a tertiary care hospital in a metropolitan city in India from 01.06.2021 to 31.06.2022. The total sample size was 400. The socio-demographic data and the clinical profile were recorded from the case records of all the 400 patients. Classification of the conditions was done as per the CCC as well as the ACT/ RCPCH classification system. The mean age in our study was 5.15 years and there was a slighter male (59.5%) preponderance. They presented in OPDs with acute symptoms such as fatigue and fever, and they had other symptoms like tightness of the body, constipation, seizures, and difficulty in swallowing. Majority of the children (55%) were suffering from neurologic and neuromuscular conditions as per CCC followed by hematologic and immunologic conditions (10%). Category 4 (irreversible but non-progressive conditions causing severe disability, leading to susceptibility to health) was reported as the most common category according to the ACT/RCPCH. Conclusion: Children suffering from chronic disease conditions requiring palliative care usually suffer from multiple symptoms which affect their daily life. As most of the patients belong to category 4 according to ACT/RCPCH which is an irreversible but non-progressive life-limiting condition, the course of the disease is prolonged, therefore requiring comprehensive care and services for a long time. It is necessary to establish more pediatric palliative care units to address the needs of such children.What is known:• Pediatric palliative care is a specialized area within palliative care, which focusses on the needs of children with life-limiting illnesses.• Data on pediatric palliative care has largely been limited to oncological conditions. There is a paucity of literature documenting the needs among children suffering from non-cancerous chronic conditions.What is new:• This study provides vital information with respect to palliative care burden among children mainly suffering from non-oncological conditions.• It also provides clinical and socio-demographic profile of the children suffering from chronic life-limiting conditions requiring palliative care in a tertiary hospital setting in a LMIC (low- or middle-income country).

Vaccine Preventable Diseases in Pediatric Palliative Care - A Multicenter Cross-Sectional Study.

Aims A proportion of children with neurodisability will have life-limiting conditions, whereby their complex continuing needs increase the intricacy and urgency for providing comprehensive supportive care to these families. Equal access to universal and specialist paediatric palliative care (PPC) services should therefore be available depending on the child’s needs. In our local borough there is a distinct group of children with complex neurodisabilities requiring input from hospital and community paediatricians, and the specialist PPC team. This audit aims to assess whether the current palliative care provided to these children is meeting the standards set by NICE guidance (2016). Methods Approval was granted by the Clinical Effectiveness Unit and audit lead locally. Standards set by NICE guidance (NG61) were used, with a target compliance of 100%. Eleven children were identified to have a neurodisability with ongoing PPC input. Primary and secondary care health records were used for collection of data, which was subsequently analysed on a password-protected spreadsheet. Results There were nine males and two females, with a mean age of 10.44 years. Underlying diagnoses include cerebral palsy (n=4); leukodystrophy (n=2); spinal muscular atrophy, movement disorder, Canavan syndrome, mitochondrial disease, and Rett syndrome (n=1 each). All children were enterally fed. Four areas of interest within the NICE guidance were identified for data collection: care planning and support, Advance Care Plan (ACP), symptom management, and input from the PPC team. Results showed that symptoms, growth and nutrition, and social care needs were addressed in all children (100%). 82% were reviewed by the PPC team in the past year; 88% had their medications adjusted accordingly when appropriate; and 91% had an ACP in place. Conclusions This audit demonstrated parents’ and carers’ involvement in the decision-making process for the child and their awareness of the child’s life-limiting condition; adequate management of symptoms, monitoring of growth and nutrition; and the presence of an ACP in most children. Identified areas for development include having a named medical specialist for each child; regular review of the ACP by the PPC team; and clear documentation of seizure management in the child’s ACP, and the stepwise management of pain.

Family Caregiver Partnerships in Palliative Care Research Design and Implementation.

To explore pediatric oncology and palliative care health care providers' perspectives on the barriers and facilitators to pediatric palliative care (PPC) referral for children with cancer in Canada using a qualitative approach to inquiry. Sixty-six health care providers from four tertiary pediatric hospitals across Canada participated in semistructured interviews. Data analysis used the grounded theory method. Data collection and analysis occurred concurrently using an inductive, constant comparative approach. Line-by-line coding guided the development of themes. NVivo software supported data management and coding. Through iterative analysis of the data, a systems theory-informed model of PPC referral was developed. The PPC referral process was best understood as a dynamic system involving four primary agents: oncologists, interprofessional oncology teams, PPC teams, and the patient and family. Each agent's readiness to initiate or accept referral was shaped by emotional, informational, cultural, skill-based, and environmental factors. We identified four distinct referral pathways, ranging from automatic referral at diagnosis to family-initiated referrals. Readiness for a referral emerged as a fluid, systemic state influenced by bidirectional interactions among all agents, rather than a static or solely clinical indicator. PPC referral is not a linear decision triggered by disease prognosis or progression alone, but rather a complex and evolving system shaped by interrelated human and organizational factors. Our systems theory model of PPC referral highlights the importance of fostering readiness across the health care team and integrating PPC as a relational and team-based process. These findings offer actionable insights to improve early PPC access and guide the design of interventions.

A palliative care emergency describes a symptom situation that is serious and demands immediate and skilled specialist attention, but is also unusual enough for there to be a possibility that the specialist has not often encountered it. In a palliative care emergency, the patient experiences sudden and severe distress that can only be relieved by prompt and confident intervention by the palliative care team. There is little time to prepare for it, and, to the specialist in paediatric palliative medicine, an emergency is defined by the importance of already having a clear strategy for dealing with it. That can be challenging for those working in paediatric palliative care, because most are rare. This chapter covers the six main emergencies encountered in paediatric palliative medicine: cord compression, catastrophic haemorrhage, severe uncontrolled pain, superior vena cava obstruction, intestinal obstruction, and hypercalcaemia.

The oldest palliative care program in Saudi Arabia is now two decades old. The program was designed in a general format to accommodate adults and children with life-limiting conditions. To date, the great majority of clients receiving services in palliative care programs in Saudi Arabia continue to be adults with advanced cancer. No specific pediatric palliative care programs or advocacy groups exist in Saudi Arabia. The efforts of some health institutions in pursuing staff specialization in pediatric palliative care are still in their infancy. In view of the paramount need for pediatric palliative care services and the relatively slow development of palliative care programs in general, development of palliative care needs to be raised on the health policy-makers’ agenda with due consideration to pediatric palliative care programs in particular. Although, the adoption of palliative care-friendly policies and the improvement of access to essential medications are important steps in Saudi Arabia, the pivotal step towards better development of palliative care is probably the training of health professionals.

Children with complex and life-limiting (CLLC) conditions require holistic care that supports not only symptom management but also their emotional, developmental, and relational well-being. Despite growing evidence on multidisciplinary approaches in pediatric palliative care (PPC), there is little focus in literature on specific role of educational therapy (EdTx). This paper explores how EdTx can contribute to dignity-centred palliative care through the case of a seven-year-old girl diagnosed with Mosaic Trisomy 13. Drawing on theories of emotional development and relational care, the case illustrates how educational therapy can enhance communication, agency, and legacy-building across home, school, and clinical settings. Educational therapists (ETs) are essential partners in co-creating meaning and preserving the identity of children with progressive decline in cognitive and physical functions. This case also offer practice-based insights into how educational therapy bridges psychosocial, developmental, and pedagogical dimensions of pediatric palliative care. The insights advocate for an integrative, relational approach that centres the child’s presence, voice, and dignity throughout the palliative care journey.

Over the past decade, pediatric palliative medicine in the United States has advanced to a remarkable degree. This article situates these changes in the general context of the growth of adult-focused palliative medicine, and enumerates several landmark reports, studies, programmatic initiatives, and professional developments that serve as milestones marking the progress of the field, while also underscoring the continuing need to better educate families and health care providers about what pediatric palliative care can offer patients, to expand the evidence base regarding specific pediatric palliative care interventions, and to further our abilities to finance and improve these services.

IntroductionThe World Health Organisation defines paediatric palliative care (PPC) as caring for the child’s body, mind, and spirit, and giving support to the family. In life-limiting conditions it is important that palliative support can be provided even when curative attempts are being utilised. In Papua New Guinea, as in other low- and middle-income countries there is a lack of services and training on PPC. This study aims to describe the characteristics of children with palliative care needs and to assess the perspectives of their parents and health care workers.MethodsA descriptive qualitative study was carried out over 5 months in 2022 at the Port Moresby General Hospital children’s wards. Clinical information was gathered from the admission charts of children with life threatening and life limiting conditions and a recorded interview was carried out with the children’s parents. A focus group interview with 10 experienced nurses caring for these children was video recorded. The recorded interviews were subjected to thematic analysis.ResultsTwenty children and their parents were included in this study. Nine had a cancer diagnosis and 11 had a chronic progressive condition. The common clinical characteristics of children with palliative care needs were pain (n = 9) and shortness of breath (n = 9), and most children had more than one symptom. Several themes were identified in the parent interviews. Most parents could not name their child’s diagnosis, but they were able to correctly describe their child’s condition using their own terms. Most parents felt involved in their child’s management and were satisfied with the care provided. Parents were psychologically affected by their child’s situation but were hopeful that God and the medicines would heal their child. Ten nurses were involved in a focus-group interview. Most nurses’ understanding of palliative care was from experience not from formal training, but most felt confident in identifying the physical, emotional, and spiritual needs of the children. Understanding of analgesia was limited, as was the availability of appropriate medications included in the WHO Analgesic Ladder.ConclusionThere is a need for a systematic approach to palliative care in Papua New Guinea. Palliative care can be integrated into an overall approach to quality of paediatric care. It is relevant to a broad section of children with severe chronic or malignant conditions and can be carried out with limited resources. It does require some resources, further training and education, and increased provision of basic drugs for symptom control.

Progress in palliative care for children in the UK

Too often children with life-threatening and life-limiting conditions and their families fail to receive adequate and consistent paediatric palliative care that meets their physical, psychological, social, and spiritual needs. The aim of this dissertation was to further improve the quality of paediatric palliative care and thereby the quality of life of children aged 0 to 18 years with life-threatening and life-limiting conditions and their families by developing the revised Dutch clinical practice guideline for paediatric palliative care. Health care providers expressed a need for more guidance on essential elements of paediatric palliative care based on the most recent evidence from scientific literature. This led to the revision of the first Dutch Paediatric palliative care guideline in 2013. The revised clinical practice guideline for paediatric palliative care was developed according to a standardized methodology that ensured trustworthiness. By using this methodology, we provided a large set of recommendations for essential components of paediatric palliative care including symptom treatment, advance care planning, shared decision-making, and psychosocial care including preloss and bereavement care. The recommendations were based upon evidence from scientific literature, clinical expertise and patient and family values. The insights and the findings of this dissertation open opportunities to further optimise the guideline and paediatric palliative care research. We elaborated on several opportunities such as the use of automated tools to improve the efficacy and quality in guideline development, broaden scope of the guideline for paediatric palliative care in the future, address identified knowledge gaps in paediatric palliative care, and facilitate further implementation of the guideline. These opportunities can facilitate the further optimisation of paediatric palliative care in the Netherlands but can also be used to improve paediatric palliative care worldwide.