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A cancer diagnosis thrusts patients and caregivers into a foreign world of health care with systems, protocols, and norms that can leave little room for individual needs and circumstances. Quality and efficacious oncology care requires clinicians to partner with patients and caregivers to understand and incorporate their needs, values, and priorities into information sharing, decision making, and care provision. This partnership is necessary for effective patient- and family-centered care and access to individualized and equitable information, treatment, and research participation. Partnering with patients and families also requires oncology clinicians to see that our personal values, preconceived ideas, and established systems exclude certain populations and potentially lead to poorer care for all patients. Furthermore, inequitable access to participation in research and clinical trials can contribute to an unequal burden of cancer morbidity and mortality. Leveraging the expertise of the authorship team with transgender, Hispanic, and pediatric populations, this chapter provides insights and suggestions for oncology care that are applicable across patient populations to mitigate stigma and discrimination and improve the quality of care for all patients.

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.

Background: Intractable feeding intolerance in children with severe neurological impairment (SNI) is poorly defined and understood. Objectives: (1) To describe 9 children with SNI, where intractable feeding intolerance was thought to be a contributor to their deterioration or death. (2) To consider terminology to describe the severe end of the spectrum of feeding difficulties in children with SNI. Results: Mean age at death was 10.3 years (range: 5 – 15.6), and median time from palliative care referral to death was 3.1 months. Location of death was home (n = 3), hospice (n = 1), and hospital (n = 5) with 1 death in intensive care. Gastrointestinal “failure” or “dysfunction” were documented for 7 children, (median time between documentation and death was 3.9 months (range: .1 to 13.1)). All children were fed via a gastrostomy tube during their life (median age of insertion 2.5 years (range: 1.2 to 6.8 years)), and 7 via the jejunal route (median age of insertion 9.2 years (range 2.4 to 14.7 years)). Children lived a median of 9 percent of their lives after jejunal tube feeding was commenced. No child had home-based parenteral nutrition. Multiple symptom management medications were required. Conclusion: ‘Intractable feeding intolerance’ describes a clinical crossroads in a child’s life where there is an opportunity to consider the appropriateness of further interventions. Further work should explore predictors of intractable feeding intolerance and the delicate balance between cause or contributor to death. The importance of clinician-family prognostic conversations and goal-concordant care both during life and in the terminal phase is highlighted.

Background: Children undergoing cancer-directed treatment experience distressing symptoms. Multi-dimensional patient-reported symptom assessment scales have been validated in children with cancer, but are not routinely used in clinical practice.Aim: To describe the symptom prevalence and burden for children receiving treatment in a paediatric oncology unit, as described by both children where possible, and their parents.Methods: Prospective survey-based study during which the Memorial Symptom Assessment Scale was administered to children and parents. Participants were offered the opportunity to complete the survey on multiple occasions. Demographic and clinical data were obtained from electronic medical records. Institutional ethics approval was granted (HREC37022A).Results: Forty-one children were recruited, aged 8 months to 18 years and 54% were female. In total, 54 parent surveys and 29 child surveys were completed. The vast majority of surveys (81%) were completed in the inpatient setting, and more than half within 10 days of chemotherapy. Haematological malignancies predominated. There was a median of 4.8 months between diagnosis and recruitment. Eleven children died after the study closed; no patients died during the study period. Children aged 10 – 18 reported an average of 15 symptoms. Symptom prevalence did not always correlate with distress.Conclusions: Exploration of the impact of a symptom, and not just its presence, is vital for patient-centred care and can be achieved using multi-dimensional symptom scales. Both the child and caregiver’s voices should be obtained where possible. Further studies are needed to explore how these scales can be used to identify distress and guide supportive care delivery.

Background: Distressing and potentially life-threatening events, such as significant external bleeding, may occur in patients with a known terminal condition. These events are often referred to as catastrophic or crisis events. Pharmacological management varies and there is little evidence to guide practice. Aim: The aim of this study was to explore Australasian palliative medicine doctors’ approaches to pre-emptive prescription of medications to manage catastrophic events. Design: Anonymous survey data were collected electronically. Setting/Participants: Australian and New Zealand palliative medicine fellows and trainees were surveyed. Results: Surveys were completed by 121 doctors; 108 (89.2%) who care for adult patients only and 13 (10.8%) who care for paediatric patients or paediatric and adult patients. In all, 74 (61.2%) respondents pre-emptively prescribed medications at least five times per year, and most orders were never administered. Significant visible bleeding and severe, acute airway obstruction were almost universally considered catastrophic events. Many respondents expressed concern about the lack of evidence to guide pre-emptive medication prescription in this setting. Clinicians reported adverse events related to pre-emptive medication orders being available ( n = 30, 24.8%), as well as orders not being available ( n = 61, 50.4%). Conclusion: Our study supports the need for guidelines, as well as formal education programmes for medical trainees and nursing staff about this important area of practice.

ObjectiveOutpatient parenteral antimicrobial therapy (OPAT) is increasingly used to treat children at home, but studies in children are scarce. We aimed to describe the use, appropriateness and outcomes of OPAT in children.DesignThis was a 12-month prospective observational study.SettingThe hospital-in-the-home programme of The Royal Children's Hospital Melbourne.PatientsAll patients receiving OPAT.InterventionsData were collected including demographics, diagnosis, type of venous access and antibiotic choice.Main outcome measuresLength of stay, adverse events, readmission rate and appropriateness of antibiotic use.Results228 patients received OPAT in 251 episodes. The median age was 7.4 years (range 1 week to 21 years), with 22 patients (10%) under 1 year. The most frequent diagnoses were exacerbation of cystic fibrosis (17%), urinary tract infection (12%) and cellulitis (9%). Most patients were transferred from the ward, but 18% were transferred directly from the emergency department, the majority with skin and soft-tissue infection (66%). Venous access was most commonly peripherally inserted central catheter (29%) and peripheral cannula (29%). 309 parenteral antibiotics were prescribed, most frequently ceftriaxone (28%) and gentamicin (19%). The majority of antibiotics (72%) were prescribed appropriately. However, 6% were deemed an inappropriate choice for the indication and 26% had inappropriate dose or duration. The incidence of central line-associated bloodstream infections was 0.9%. The unplanned readmission rate was 4%, with low rates of OPAT-related adverse events. Three children (1%) had an inadequate clinical response.ConclusionsOPAT is a safe and effective way of providing antibiotics to children. Despite high rates of appropriate antibiotic use, improvements can still be made.

Background There are many barriers to advance care planning in paediatrics. High expectations for cure, difficulties prognosticating and a lack of training in how to approach these conversations mean that care planning often occurs late or not at all. Further, many of the advance care planning documents developed to date focus on interventions rather than goals of care. This can drive ‘tick box’ discussions which both paediatricians and parents find confronting. Aim To create a suite of resources to assist paediatricians and families to engage in discussions regarding goals of care as a means of facilitating advance care planning. Methods Literature review, consultation with paediatricians and families, and an audit of patient deaths to identify potential triggers for advance care planning. Results Development of; A Goals of Patient Care Document consisting of six components, all accessible via an electronic medical record and able to capture evolving discussions and decisions, A discussion guide for paediatricians outlining key principles and suggested phrases, An on-line education module for health professionals, A set of triggers for advance care planning, A written resource for parents. Discussion/conclusion Advance care planning requires the development of tools to capture both decisions made and discussions in progress. Paediatricians need assistance to identify when advance care planning is needed and suggested ways of approaching the discussion. Audit and research is now required to determine the efficacy of this newly developed suite of resources.

Where treatment allows, children do better at home than in hospital.1 The Royal Children's Hospital (RCH) Melbourne has a hospital-in-the-home (HITH) programme that provides acute medical care to children at home (eg, intravenous antibiotics for cellulitis, pneumonia). However, there is a risk of ‘out of sight, out of mind’ for clinicians.2 We aimed to increase the visibility of children treated at home by piloting mobile telemedicine for patients on HITH. Objectives were to assess the acceptability and feasibility of acute medical review by telemedicine and to explore the technology's uses. We undertook a prospective pilot study from February to June 2013. Several hardware solutions were assessed for weight, data transfer method, videoconferencing specifics, compatibility with departmental software and price. The Acer Iconia tablet was selected, …