Gabapentin for Pain in Pediatric Palliative Care.

OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

Shepherding parents to prepare for end-of-life decision-making: a critical phenomenological study of the communication approach of paediatricians caring for children with life-limiting conditions in Australia.

BACKGROUND/OBJECTIVES: Shared decision-making is widely accepted as the best approach for end-of-life decision-making for children with life-limiting conditions. Both paediatricians and parents find benefit in preparing for such decisions. However, little detail is known about this preparatory process. This study aims to explore how paediatricians prepare parents for end-of-life decision-making for a child with a life-limiting condition using clinical simulation. DESIGN: Individual, semistructured, post-simulation qualitative interviews of paediatricians and parent-actors. SETTING: Acute intensive and long-term outpatient paediatric care in Victoria, Australia. PARTICIPANTS: 18 purposively sampled paediatricians who treat children with life-limiting conditions and the two parent-actors involved in all simulations. Paediatricians were excluded if they assisted in the study design, worked within specialist palliative care teams or did not provide clinical care outside the neonatal period. RESULTS: Three key themes in a preparatory process (termed 'shepherding') were identified: (1) paediatricians aim to lead parents along a pathway to future end-of-life decisions, (2) paediatricians prefer to control the pace of these discussions and (3) paediatricians recognise they need to have courage to face risk with this preparation. Paediatricians use a variety of shepherding strategies to influence the pace, content and framing of discussions, which may help prepare parents to make the best end-of-life treatment decisions when the time comes. CONCLUSIONS: Shepherding is a newly identified, subtle process intended to influence parents by guiding their understanding of their child's health and potential suffering in advance of decision-making. Shepherding does not fit within current descriptions of physicians' decision-making influence. Paced reflection, thinking and provision of information are shepherding strategies preferred by paediatricians, and these appear the same regardless of whether paediatricians intend to steer parents towards particular treatment decisions or simply prepare them for the process of decision-making. Further study about the intention of this influence and parental perception of this communication is needed.

Navigating two 'truths': a qualitative study of physician-led end-of-life decision-making for children with life-limiting conditions.

OBJECTIVE: To describe how paediatricians undertake the process of end-of-life decision-making for a child with a life-limiting condition who is unable to participate in decision-making for themselves. DESIGN: A qualitative phenomenological study using semistructured interviews based around a clinical vignette matched to the clinical practice of individual paediatricians. Verbatim transcripts underwent thematic analysis. SETTING: Paediatricians practising in Victoria (Australia) between mid-2019 and mid-2020. PARTICIPANTS: Twenty-five purposively sampled paediatricians caring for children with specific life-limiting conditions: children with severe neurodisability, oncological or haematological malignancies or complex cardiac disease in an inpatient intensive care or outpatient clinic setting. RESULTS: A process of physician-led end-of-life decision-making was described. Paediatricians first contemplate that the child's death is approaching, then prepare themselves by ensuring there are no reversible factors at play. They then inform parents of this view and, if needed, hold discordant views between parents and themselves about the child's death in a 'fruitful tension'. Ultimately, they seek to bring parents' views of their child in line with theirs to facilitate goal alignment. CONCLUSIONS: Paediatricians feel responsible for facilitating the alignment of parental understanding of the child's health status with their own. This is achieved either through direction or by holding differences between parental and medical truths about the child's health in tension to provide time, space, and clarity. This alignment was seen as key to enabling end-of-life treatment decisions, without which conflict in end-of-life decision-making can arise or persist.

Informing Simulation Design: A Qualitative Phenomenological Study of the Experiences of Bereaved Parents and Actors.

INTRODUCTION: Simulations, which represent reality, are effective in pediatric healthcare communication skills education and training. Parents are increasingly engaged in simulation development, particularly for authentic character development, to help achieve greater psychological fidelity. For simulated encounters related to a child's end-of-life, involvement of bereaved parents would make sense. However, this is challenging because there is limited research to guide their inclusion and significant responsibility for any approach to be thoughtful and psychologically safe for participating parents. This study explores the impact and experiences of bereaved parents and actors who participated in simulation design. METHODS: This qualitative phenomenological study involved five bereaved parents and two actors who participated in a full-day workshop to design and develop characters for use in a simulation. Individual semistructured interviews were conducted up to four weeks after the workshop. Data collected from these telephone interviews were analyzed using inductive content analysis. RESULTS: Bereaved parents found the workshop emotionally challenging but positive, worthwhile, and beneficial. Similarly, actors found the workshop helpful in character development and, although it was an intense experience for them, it validated the importance of their work. Key elements of our research findings could inform future such activities. CONCLUSIONS: Involving bereaved parents in simulation design can be psychologically safe and beneficial for both parents and actors. Ongoing involvement of bereaved parents may lead to higher-quality simulated experiences, allowing clinicians to practice skills to enhance care provided at a child's end-of-life.

Conceptualising paediatric advance care planning: a qualitative phenomenological study of paediatricians caring for children with life-limiting conditions in Australia.

OBJECTIVES: Advance care planning (ACP) helps families and paediatricians prepare and plan for end-of-life decision-making. However, there remains inconsistency in its practice with the limited literature describing what this preparation involves, and whether paediatricians recognise a difference between the process of ACP and its outcomes, such as resuscitation plans. This study aims to understand how paediatricians conceptualise ACP when caring for children with life-limiting conditions (LLC) who are unable to participate in decision-making for his/herself. DESIGN: Individual, semistructured, vignette-based qualitative interviews. SETTING: Acute inpatient and long-term outpatient paediatric care in three secondary and two tertiary centres in Victoria, Australia. PARTICIPANTS: 25 purposively sampled paediatricians who treat children with LLC, outside the neonatal period. Paediatricians were excluded if they worked within specialist palliative care teams or assisted in this study's design. RESULTS: Four key themes were identified when approaching end-of-life decision-making discussions: (1) there is a process over time, (2) there are three elements, (3) the role of exploring parental values and (4) the emotional impact. The three elements of this process are: (1) communicating the child's risk of death, (2) moving from theoretical concepts to practice and (3) documenting decisions about resuscitation or intensive technologies. However, not all paediatricians recognised all elements as ACP, nor are all elements consistently or intentionally used. Some paediatricians considered ACP to be only documentation of decisions in advance. CONCLUSION: There is a preparatory process of discussions for end-of-life decision-making, with elements in this preparation practised within therapeutic relationships. Complexity in what constitutes ACP needs to be captured in guidance and training to include intentional exploration of parental values, and recognition and management of the emotional impact of ACP could increase its consistency and value.

Decision-making approaches for children with life-limiting conditions: results from a qualitative phenomenological study.

BACKGROUND: For children with life-limiting conditions who are unable to participate in decision-making, decisions are made for them by their parents and paediatricians. Shared decision-making is widely recommended in paediatric clinical care, with parents preferring a collaborative approach in the care of their child. Despite the increasing emphasis to adopt this approach, little is known about the roles and responsibilities taken by parents and paediatricians in this process. In this study, we describe how paediatricians approach decision-making for a child with a life-limiting condition who is unable to participate in decision-making for his/herself. METHODS: This qualitative phenomenological study involved 25 purposively sampled paediatricians. Verbatim transcripts from individual semi-structured interviews, conducted between mid-2019 and mid-2020, underwent thematic analysis. Interviews were based around a case vignette matched to the clinical experience of each paediatrician. RESULTS: Two key themes were identified in the exploration of paediatricians' approach to decision-making for children with life-limiting conditions: (1) there is a spectrum of paediatricians' roles and responsibilities in decision-making, and (2) the specific influences on paediatricians' choice of approach for end-of-life decisions. In relation to (1), analysis showed four distinct approaches: (i) non-directed, (ii) joint, (iii) interpretative, and (iv) directed. In relation to (2), the common factors were: (i) harm to the child, (ii) possible psychological harm to parents, (iii) parental preferences in decision-making, and (iv) resource allocation. CONCLUSIONS: Despite self-reporting shared decision-making practices, what paediatricians often described were physician-led decision-making approaches. Adopting these approaches was predominantly justified by paediatricians' considerations of harm to the child and parents. Further research is needed to elucidate the issues identified in this study, particularly the communication within and parental responses to physician-led approaches. We also need to further study how parental needs are identified in family-led decision-making approaches. These nuances and complexities are needed for future practice guidance and training around paediatric decision-making. TRIAL REGISTRATION: Not applicable.

Enhancing paediatric palliative care: A rapid review to inform continued development of care for children with life-limiting conditions.

AIM: Following the establishment of paediatric palliative care services over recent decades, this study sought to identify information to inform future policy and practice. METHODS: A rapid review using thematic synthesis was conducted to synthesise existing information about improving paediatric palliative care. Information was extracted in relation to key areas for investment and change: quality, access, advance care planning, skills, research, collaboration and community awareness. RESULTS: A total of 2228 literature sources were screened, with 369 included. Synthesised information identified clear ways to improve quality of care, access to care, advance care planning, and research and data collection. The synthesis identified knowledge gaps in understanding how to improve skills in paediatric palliative care, collaboration across Australian jurisdictions and community awareness. CONCLUSIONS: The findings of this review bring together information from a vast range of sources to provide action-oriented information to target investment and change in paediatric palliative care over the coming decades.

Palliative Care Clinical Trials: Building Capability and Capacity.

Clinical trials are a key component of expanding the evidence base in palliative care. A key strategic objective of the Victorian Comprehensive Cancer Centre (VCCC), a multisite cancer center alliance, was to increase palliative care clinical trial expertise. The palliative care services within the VCCC alliance presented substantial trial development opportunities with large number of patients and established relationships, but few trial-active centers. Objectives: To establish a multi-site "Building Capability in Palliative Care Clinical Trials" program as a service development, and to assess the strategies, activities, and the outcomes resulting from this program. Methods: A series of strategies and activities were developed linked to the key program objectives of increasing the number of clinical sites and skilled clinicians conducting clinical trials, increasing the number of trials available and patients participating, broadening research opportunities in palliative care, and establishing the program sustainability. Results: In the two years of implementation, the program resulted in the establishment and conduct of several Phase 4 postmarketing pharmacovigilance studies, nine Phase 2 and 3 trials across five palliative care services, and a Phase 1 clinical trial. During the program, 150 patients were recruited to clinical trials, and 258 prospective pharmacovigilance monitoring cases were recorded. Five investigator-initiated trials were developed by clinical trial fellows and achieved competitive (n = 3) or commercial (n = 2) funding. Clinicians reported that undertaking clinical trials had increased attention to the evidence base of care provision, and increased service research activity more broadly. Long-term sustainability remains a challenge, particularly in the context of the COVID-19 pandemic. Conclusions: Clinical trials in palliative care services are feasible, acceptable, and result in increased attention to the evidence base of care. The strategies detailing the framework, activities, and outcomes have been collated to facilitate implementation of clinical trials in other sites and with other trial-naive disciplinary groups.

Top Ten Tips Palliative Care Clinicians Should Know About Prognostication in Children.

Pediatric palliative care (PPC) is different from palliative care (PC) for adults. However, conceptualizing PPC remains cumbersome due to the high heterogeneity of often rare diseases, the high diversity of disease trajectories, and the particular difficulty to predict the future of an individual, severely ill child. This article aims to provide an overview and critical reflection of different aspects of prognostication in children with PC needs. This includes different diseases from neurology to oncology, from the unborn baby to the young adult, new approaches in treatment, advance care planning, and, most important, communication with the affected child as well as parents.

Dissonance in views between parents and clinicians of children with serious illness: How can we bridge the gap?

Parents of children with serious illness must find a tolerable way of living each day, while caring for their child and making decisions about their treatments. Sometimes clinicians worry that parents do not understand the seriousness of their child's illness, including possible death. This can lead to tension, disagreement and even conflict. Such situations continue to occur despite expanding literature to help clinicians understand drivers of parental behaviour and decision-making. Some of this literature relates to the role of hope and how parents characterise being a 'good parent'. This article will summarise some of the applications and limitations of the hope and 'good parent' literature, as well as frameworks to understand grief and loss. We propose, however, that there is at least one missing link in understanding potential dissonance in views between parents and clinicians. We will make a case for the importance of a richer understanding about if, and how, parents 'visit' the 'reality' that clinicians wish to convey about their child's diagnosis and prognosis. We propose that clinician understanding about the benefits and burdens of 'visiting' this 'reality' for an individual family may help guide conversations and rapport, which in turn may influence decision-making with benefits for the child, family and clinicians.

Improving paediatric advance care planning: Results of a learning needs analysis and simulation-based education programme.

AIM: To assess clinicians' experience, attitudes and confidence with advance care planning (ACP) at a quaternary paediatric referral centre using a learning-needs survey, and then apply this information to develop and examine the feasibility of simulation-based education for this topic. METHODS: An electronic learning-needs survey was distributed to medical, nursing and allied health clinicians from departments who provide primary care for children with life-limiting conditions. Results were incorporated into the design of a simulation-based education session which was piloted with the Royal Children's Hospital Oncology Department. RESULTS: A total of 157 learning-needs surveys were included in analysis, and included quantitative and qualitative responses from nursing, allied health, senior and junior medical staff from intensive care, general and subspecialty medical teams. Most (75.0%) participants had participated in ACP discussions previously. Only 40.1% of participants felt confident to assess appropriate timing of, and 45.2% felt adequately prepared to participate in ACP discussions. Barriers identified were both clinician and patient/parent related, including clinicians not knowing when to address issues (43.9%) or what to say (21.0%). Participants indicated that ACP discussions are most frequently initiated when death is clearly imminent. Following a pilot of simulation-based education with the oncology department, 90% of participants expressed confidence to participate in ACP discussions. CONCLUSIONS: Barriers to paediatric ACP, including lack of clinician training, continue to contribute to delayed conversations. Simulation-based education is a valuable and feasible educational tool that can increase clinicians' understanding and confidence in this area.

Simulation-Based Research: A Scoping Review.

There is an increasing interest in using simulation in qualitative research outside evaluation of educational-based activities. To examine how data from simulation has been generated and used in qualitative research, we conducted a scoping review of research topics and data collection and analysis processes reported in qualitative research using simulation in the research method. Of the 665 articles that involved qualitative inquiry, 46 involved simulation in research independent from simulation-based education. Phenomena explored included communication and clinical decision-making during routine care and at highly sensitive times, such as the end of life, as well as the experiences when providing care in a variety of settings and patients, individually and within teams. Our findings highlight that simulation can be used for analysis of phenomena that are difficult for researchers to gain access to firsthand, and we discuss features for consideration when using simulation in qualitative health research.

Management of People With a Fontan Circulation: a Cardiac Society of Australia and New Zealand Position statement.

The Fontan circulation describes the circulatory state resulting from an operation in congenital heart disease where systemic venous return is directed to the lungs without an intervening active pumping chamber. As survival increases, so too does recognition of the potential health challenges. This document aims to allow clinicians, people with a Fontan circulation, and their families to benefit from consensus agreement about management of the person with a Fontan circulation. The document was crafted with input from a multidisciplinary group of health care providers as well as individuals with a Fontan circulation and families. It is hoped that the shared common vision of long-term wellbeing will continue to drive improvements in care and quality of life in this patient population and eventually translate into improved survival. KEYPOINTS.

Compassionate Discharges From the PICU.

OBJECTIVES: This article focuses on compassionate discharge from an ICU setting for pediatric patients. DATA SOURCES: Not Applicable. STUDY SELECTION: Not Applicable. DATA EXTRACTION: Not Applicable. DATA SYNTHESIS: The rationale for compassionate discharge is described, along with suggestions for assessing feasibility. A patient case highlights the potential benefits of and provides specific examples of steps involved in the process. A general framework for consideration of compassionate discharge, along with a checklist, is provided to highlight the importance of detailed planning and communication. CONCLUSIONS: Although many children die in an ICU setting, some families desire end-of-life care in a nonhospital setting, often at home. For children dependent on technology, there are considerable logistical challenges to overcome, and it may not always be possible. However, with meticulous planning and close collaboration between intensive care staff, palliative care staff, and other community services, compassionate discharge can be done successfully and provide the child and family the opportunity for end-of-life care in the place most meaningful to them.

The last 2 years of life for children with severe physical disability: Observations from a tertiary paediatric centre.

AIM: To describe the clinical course for children with severe physical disability (SPD) in the 2 years prior to their death and to identify whether these children had palliative care involvement and advance care planning prior to death. To investigate whether there is a difference between children with progressive (PSPD) and non-progressive (NPSPD) aetiologies of SPD. METHODS: A retrospective cohort analysis of 48 children with SPD who died between 1 January 2013 and 1 January 2015 at The Royal Children's Hospital, Melbourne. Clinical charts were reviewed to collect data about the type of SPD, frequency and duration of hospital admissions, duration of palliative care involvement (if any) and presence of an advance care plan. RESULTS: The majority of children were admitted in the 6 months before their death, and over a third were admitted to the intensive care unit. There was a significant increase in the frequency of hospital admissions as the study cohort approached death (P = 0.003). The majority of children with SPD were offered a referral to a palliative care service, with referrals more likely in children with PSPD (90%) compared to children with NPSPD (57%). While approximately 60% of children in each cohort had an advance care plan, there was a trend towards this being formalised earlier in children with PSPD (P = 0.09). CONCLUSION: The increase in hospital admissions prior to death in children with SPD suggests an opportunity for greater consistency in offering advanced care planning and palliative care, especially to those with NPSPD.

A good resource for parents, but will clinicians use it?: Evaluation of a resource for paediatric end-of-life decision making.

BACKGROUND: Communication with parents about end-of-life care and decisions is a difficult and sensitive process. The objective of the present study was to ascertain clinicians' views on the acceptability and usefulness of a handbook and web-based resource (Caring Decisions) that was designed as an aid for parents facing end-of-life decisions for their child. METHODS: Qualitative interviews were conducted with a range of health professionals who provide care to children facing life-limiting conditions. RESULTS: Data analysis confirmed the acceptability and usefulness of the resource. Two major themes were revealed: 1. Family empowerment, with sub-themes Giving words and clarity, Conversation starter, 'I'm not alone in this', and A resource to take away, highlighted how the resource filled a gap by supporting and enabling families in a multitude of ways; 2. Not just for families, with sub-themes A guide for staff, When to give the resource?, How to give the resource and Who should give the resource?, explored the significant finding that participants viewed the resource as a valuable tool for themselves, but its presence also brought into relief potential gaps in communication processes around end-of-life care. CONCLUSION: The interview data indicated the positive reception and clear value and need for this type of resource. However, it is likely that successful resource uptake will be contingent on discussion and planning around dissemination and use within the health care team.

Lived experiences of parents caring for a child with a life-limiting condition in Australia: A qualitative study.

BACKGROUND: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. AIM: To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia. DESIGN: Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework. SETTING/PARTICIPANTS: Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition. RESULTS: Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose. CONCLUSION: This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers.

Caring Decisions: The Development of a Written Resource for Parents Facing End-of-Life Decisions.

BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. AIM: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. DESIGN: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. SETTING/PARTICIPANTS: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. RESULTS: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. CONCLUSIONS: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.