Isn't it time for health professionals to shift their focus from preaching politics to promoting peace?

The magnitude of suffering on both the Israeli and Palestinian sides of the current war is beyond comprehension. Political agendas, misinformation and bias related to the conflict are being seen far too frequently in healthcare and medical academia. We believe it is time for healthcare professionals to redirect our attention away from politics and use our medical training to advocate for peace, care, and the welfare of all people, regardless of which side of the conflict they fall into. Politics in the workplace, particularly when disseminated information is divisive and, at times, based on opinion rather than fact, risks significant harm to patients, their families, and healthcare staff, as well as to institutional reputation. If we genuinely care for the well-being of patients and staff, we must lead by example and prevent healthcare systems and medical journals from being hijacked by politics.

Intractable Feeding Intolerance in Children With Severe Neurological Impairment: A Retrospective Case Review of Nine Children Known to a Pediatric Palliative Care Service.

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.

The psychosocial impact of childhood dementia on children and their parents: a systematic review.

BACKGROUND: Childhood dementias are a group of rare and ultra-rare paediatric conditions clinically characterised by enduring global decline in central nervous system function, associated with a progressive loss of developmentally acquired skills, quality of life and shortened life expectancy. Traditional research, service development and advocacy efforts have been fragmented due to a focus on individual disorders, or groups classified by specific mechanisms or molecular pathogenesis. There are significant knowledge and clinician skill gaps regarding the shared psychosocial impacts of childhood dementia conditions. This systematic review integrates the existing international evidence of the collective psychosocial experiences of parents of children living with dementia. METHODS: We used the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. We systematically searched four databases to identify original, peer-reviewed research reporting on the psychosocial impacts of childhood dementia, from the parent perspective. We synthesised the data into three thematic categories: parents' healthcare experiences, psychosocial impacts, and information and support needs. RESULTS: Nineteen articles met review criteria, representing 1856 parents. Parents highlighted extensive difficulties connecting with an engaged clinical team and navigating their child's rare, life-limiting, and progressive condition. Psychosocial challenges were manifold and encompassed physical, economic, social, emotional and psychological implications. Access to coordinated healthcare and community-based psychosocial supports was associated with improved parent coping, psychological resilience and reduced psychological isolation. Analysis identified a critical need to prioritize access to integrated family-centred psychosocial supports throughout distinct stages of their child's condition trajectory. CONCLUSION: This review will encourage and guide the development of evidence-based and integrated psychosocial resources to optimise quality of life outcomes for of children with dementia and their families.

Partnering With Patients and Caregivers in Cancer Care: Lessons From Experiences With Transgender, Hispanic, and Pediatric Populations.

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.

Low Rates of Grief and Bereavement Support Pre- and Post-Death for Those Who Died Within 72 hours of Admission to a Quaternary Teaching Hospital.

Grief and bereavement support are crucial to good palliative and end-of-life care. Support models differ between and within services. In addition, while patient and family needs vary based on risk and resilience factors, acute or unexpected death is associated with complicated grief. Our study was a retrospective review of 159 patients who died within 72 hours of hospital admission. We found a high proportion of unexpected and traumatic deaths and low grief and bereavement support rates. Further work is needed to streamline policies to optimize patient and family-centred grief and bereavement support in the acute hospital setting.

Outpatient parenteral antimicrobial therapy: how young is too young?

OBJECTIVE: To report the use, and assess the efficacy and outcomes of outpatient parenteral antimicrobial therapy (OPAT) in neonates (≤28 days of age), compared with older infants (1-12 months of age). DESIGN: A prospective 8-year observational study from September 2012 to September 2020. SETTING: The Hospital-in-the-Home (HITH) programme of the Royal Children's Hospital Melbourne. PATIENTS: Neonatal patients (≤28 days of age) were compared with older infants (1-12 months of age) receiving OPAT. INTERVENTIONS: Data were collected including demographics, diagnosis, type of venous access and antibiotic choice. MAIN OUTCOME MEASURES: Success of OPAT, antibiotic appropriateness, complications and readmission rate. RESULTS: There were 76 episodes for which neonates were admitted to HITH for OPAT, and 405 episodes for older infants. Meningitis was the most common diagnosis in both groups (59% and 35%, respectively); the most frequently prescribed antibiotic was ceftriaxone for both groups (61% and 49%). A positive bacterial culture was less frequent in neonates (38% vs 53%, p=0.02). Vascular access complication rate was 19% in neonates compared with 13% in older infants (p=0.2) with no central line-associated bloodstream infection in either group. Rates of appropriate antibiotic prescribing were similarly high between groups (93% vs 90%, p=0.3). The OPAT course was successfully completed in 74 of 74 (100%) neonates and 380 of 396 (96%) older infants (p=0.09). The unplanned readmission rate was low: 4 of 76 (5%) neonates and 27 of 405 (7%) older infants. CONCLUSIONS: OPAT is a safe and effective way of providing antibiotics to selected clinically stable neonatal patients. While appropriate antibiotic use was common, improvements can still be made.

The Impact of Health Professionals' Language on Patient Experience: A Case Study.

When people become patients, they become vulnerable to their healthcare system and healthcare clinicians. In this case study, we describe an example of patient distress caused by language overheard in the perioperative environment. Clinicians need to be mindful that the language we use may have a significant impact on patient experience, be it during direct conversation or from conversations overheard. This is an important component of patient-centered care.

A Case Study of Pain Management at End-of-Life for a Patient on High-Dose Buprenorphine.

In Australia, high-dose sublingual buprenorphine and long-acting injectable buprenorphine are available. High-dose buprenorphine is used predominantly in the setting of opioid use disorder and has a role in chronic pain. Palliative care specialists are increasingly involved in pain management and end-of-life care for patients on these medications, yet there is a lack of education and training about high-dose buprenorphine for palliative care specialists. We describe our experience caring for John (fictional name), a gentleman with chronic pain and a new high-grade post-transplant lymphoproliferative disorder prescribed high-dose buprenorphine. We share the challenges and experience in caring for John as he deteriorated into the terminal phase and died of his illness. We include potential management options and the rationale for our decision to rotate John from high-dose sublingual buprenorphine to subcutaneous oxycodone. We conclude with practice implications and suggestions for improved patient care and clinician experience, including increased collaboration between palliative medicine, acute pain, and addiction medicine services, increased education and training for palliative care specialists about high-dose buprenorphine, and ultimately the development of consensus high-dose buprenorphine to oral morphine equivalence guidelines.

Desire to Die Statements in the Era of Voluntary Assisted Dying: An Audit of Patients Known to a Victorian Consultation-Liaison Palliative Care Service.

Objectives: In the new era of voluntary assisted dying (VAD) legislation in Australia, this study aimed to explore (1) underlying reasons for desire to die statements (DTDSs), (2) clinician responses to DTDSs and (3) whether DTDSs were a true request for VAD. Methods: Clinical audit using an existing prospectively collected quality assurance database, supplemented by electronic medical records. Patients known to a consultation-liaison palliative care service who expressed a DTDS between October 2019 and September 2020 were included. Results: Forty-one patients were included; 29 (71%) were male, 29 (71%) had a malignancy and 31 (76%) expressed a DTDS more than once. Uncontrolled psychological symptoms were present more often than physical (n = 30 vs 19 [73% vs 46%]), yet physical symptoms were addressed more frequently than psychological (80% vs 63% of the time). Based on available data, the VAD assessment process was commenced by 7 patients, and death by VAD occurred for 2 patients. Conclusions: In our study, DTDSs were complex, multi-layered requests that more commonly reflected psychological rather than physical suffering. Though VAD is now legally possible, a DTDS was not always synonymous with a request for VAD. Key to responding to these requests are high levels of clinician confidence and communication skills. Training in this area remains critical for the experience of both patients and clinicians.

Goals of Care Discussions Over the Course of a Patient's End of Life Admission: A Retrospective Study.

BACKGROUND: As deaths in hospitals increase, clear discussions regarding resuscitation status and treatment limitations, referred to as goals of care (GOC), are vital. GOC may need revision as disease and patient priorities change over time. There is limited data about who is involved in GOC discussions, and how this changes as patients deteriorate in hospital. AIMS: To review the timing and clinicians involved in GOC discussions for a cohort of patients who died in hospital. METHODS: Retrospective observational audit of 80 consecutive end of life admissions between March 11th and April 9th, 2019. RESULTS: Of 80 patients, 75 (93.6%) had GOC recorded during their admission, about half for ward-based non-burdensome symptom management or end-of-life care. GOC were revised in 68.0% of cases. Medical staff involved in initial versus final GOC discussions included home team junior doctor (54.7% versus 72.5%), home team consultant (37.3% versus 56.9%) and ICU doctor (16.0% versus 21.6%). For initial versus final GOC decisions, patients were involved in 34.7% versus 31.4%, and family in 53.3% versus 86.3%. Dying was documented for 92.0% of patients and this was documented to have been communicated to the family and patient in 98.6% and 19.5% of cases respectively. CONCLUSIONS: As patients deteriorated, family and senior clinician involvement in GOC discussions increased, but patient involvement did not. Junior doctors were most heavily involved in discussions. We advocate for further GOC training and modeling to enhance junior doctors' confidence and competence in conducting and involving patients and families in GOC conversations.

A Descriptive Cohort Study of Adolescent and Young Adult Decedents Known to an Australian Comprehensive Cancer Center.

In Australia, cancer is the second leading cause of death in adolescents and young adults (AYA). In an audit of 76 AYA decedents known to a comprehensive cancer center, most were male (63%), and most had a parent as primary carer (78%). Median age at diagnosis was 21 years (range: 15-27). Median time from diagnosis to first palliative care consultation was 9 months, and from first palliative care review to death, 4 months. Location of death was hospital (41%), home (24%), and palliative care unit (16%). Eleven (65%) of 17 patients who wished to die at home achieved this.

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.

Silent suffering of the dying and their families: impact of COVID-19.

Death, grief and bereavement all look different in the current COVID-19 pandemic. Patients and families are suffering as a result of COVID-19 itself, and the measures required to contain it. As a result, health professionals need to be aware of potential for additional psychological distress, as well as the risk of prolonged grief disorder.

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.

Inpatient versus outpatient parenteral antibiotic therapy at home for acute infections in children: a systematic review.

Inpatient management is necessary in many situations, but medical and allied-health treatments are increasingly being used on an outpatient basis to allow patients who would traditionally have been admitted to hospital to remain at home. Home-based clinical management has many potential benefits, including reduced hospital-acquired infections, cost savings, and patient and family satisfaction. Studies in adults provide evidence for the benefits of home-based versus hospital-based intravenous antibiotics, but few studies inform practice in home-based intravenous antibiotic therapy for children. We systematically reviewed the efficacy, safety, satisfaction, and cost of home-based versus hospital-based intravenous antibiotic therapy for acute infections in children. We searched MEDLINE (from Jan 1, 1946, to Jan 31, 2017) and Embase (from Jan 1, 1974, to Jan 31, 2017) for studies investigating home-based and hospital-based intravenous antibiotic therapy and assessed them for quality. 2827 articles were identified and 19 studies were included in the systematic review. Efficacy results differed between studies depending on the outcome assessed. The incidence of complications and readmission to hospital was similar for hospital-based and home-based treatments. In seven (47%) of 15 studies, patients who had all or part of their treatment at home received treatment for longer than patients who were treated entirely in hospital. No studies showed that home-based treatment was less safe than hospital-based treatment. In all studies in which treatment satisfaction or costs were assessed, home-based treatment was satisfactory to patients or patients' families and less expensive per episode than hospital-based treatment by 30-75%. Thus, home-based intravenous antibiotic therapy might be popular and cost-effective, but randomised studies of the efficacy of this strategy are needed. This systematic review was registered with PROSPERO (number CRD42015024406).

Polymicrogyria and deletion 22q11.2 syndrome: window to the etiology of a common cortical malformation.

Several brain malformations have been described in rare patients with the deletion 22q11.2 syndrome (DEL22q11) including agenesis of the corpus callosum, pachygyria or polymicrogyria (PMG), cerebellar anomalies and meningomyelocele, with PMG reported most frequently. In view of our interest in the causes of PMG, we reviewed clinical data including brain-imaging studies on 21 patients with PMG associated with deletion 22q11.2 and another 11 from the literature. We found that the cortical malformation consists of perisylvian PMG of variable severity and frequent asymmetry with a striking predisposition for the right hemisphere (P = 0.008). This and other observations suggest that the PMG may be a sequela of abnormal embryonic vascular development rather than a primary brain malformation. We also noted mild cerebellar hypoplasia or mega-cisterna magna in 8 of 24 patients. Although this was not the focus of the present study, mild cerebellar anomalies are probably the most common brain malformation associated with DEL22q11.

Expectant management of uterine dehiscence in the second trimester of pregnancy.

BACKGROUND: Uterine dehiscence and rupture are serious complications of pregnancy after a cesarean delivery. Management of uterine dehiscence diagnosed in second trimester can be controversial. CASE: A woman with a previous cesarean delivery was diagnosed with a uterine dehiscence at 20 weeks in the area of her prior cesarean incision. Although she was counseled regarding risks to herself and the fetus, she decided to continue the pregnancy. She was, therefore, managed expectantly until 31 weeks and delivered by cesarean because of fetal heart rate decelerations. The infant did well and was discharged home at 3 weeks of age. The patient remained asymptomatic after delivery. CONCLUSION: With close monitoring, expectant management of uterine dehiscence diagnosed in the second trimester is possible.