scholarly journals Impact of Pediatric Palliative Care Intensive Educational Session on Resident Confidence in Caring for Children and Families with Serious Illness (QI727)

2021 ◽  
Vol 61 (3) ◽  
pp. 666-667
Author(s):  
Casie James ◽  
Courtney Styres ◽  
Shannon Palombo ◽  
Alexis Morvant
Author(s):  
Stefan J. Friedrichsdorf

Annually, at least 21 million children could benefit from pediatric palliative care (PPC) and 8 million would need specialized PPC services. In the USA alone, more than 40,000 children aged 0–19 years die annually; 55% of them are infants younger than 1 year of age. Pain is common, under-recognized, and under-treated, especially in children with progressive neurodegenerative and chromosomal conditions with central nervous system impairment. Unrelieved pain is also common in children with advanced serious illness during the end-of-life period, and, when treated, the therapy is commonly ineffective. Treating pain in children with serious illness is not profoundly different than advanced pain management for children with complex acute conditions or diseases such as major trauma, burns, cancer, or those with sickle cell disease in vaso-occlusive crisis. It is important to appreciate that children with serious illness are more likely to simultaneously suffer from acute pain, neuropathic pain, visceral pain, total pain, and chronic pain. As such, multimodal analgesic (i.e., multiple agents, interventions, rehabilitation, psychological modalities, and integrative (“nonpharmacologic,” e.g., behavioral, physiological, and psychological) therapies that act synergistically for more effective pediatric pain and symptom control with fewer side effects than a single analgesic or modality must be employed. Opioids, such as morphine, fentanyl, hydromorphone, oxycodone, and methadone, remain the mainstay medications to effectively treat pain in children with serious illness. However, medications alone are often insufficient for optimal pain control. In fact, the paradigm shift away from “medications only” toward offering “multimodal analgesia” to children with serious illness experiencing pain, including addressing chronic pain/primary pain disorders and total pain has become a “game changer” in advancing PPC to ensure that patients can live as long as possible, as well as possible.


2020 ◽  
Vol 25 (4) ◽  
pp. 332-335 ◽  
Author(s):  
Lucia De Zen ◽  
Irene Del Rizzo ◽  
Margherita Robazza ◽  
Francesca Barbieri ◽  
Marta Campagna ◽  
...  

Sleep disturbance is a crucial issue in pediatric palliative care, with a dramatic impact on the quality of life of children and families. Dexmedetomidine (DEX) is a selective α-2 agonist, with anxiolytic, hypnotic, and analgesic properties, that could play a role in the management of refractory sleep disturbances. We describe the use of intranasal DEX as a sleep inductor in a 10-year-old female with dystrophic epidermolysis bullosa and a severe sleep disorder. After treatment with melatonin, benzodiazepines, and niaprazine had failed, she was admitted to the hospital where 3 mcg/kg/day of intranasal DEX was administered before bedtime. She received 0.7 mL of the IV formulation at a concentration of 100 mcg/mL with half the dose given in each nostril via a Mucosal Atomization Device. During this time, she was also monitored for potential side effects (e.g., bradycardia, blood pressure derangements). After 2 weeks of hospitalization, she was discharged with ready-to-use doses of DEX for home treatment. The child's heart rate and blood oxygen saturation were monitored at home. There was a definite improvement in sleep quality and duration, daytime alertness, pain control, and quality of life. No side effects were reported and the drug retained its effect over time (the patient is currently taking the drug). Intranasal DEX could be a safe and effective strategy to manage refractory sleep disturbances in children in pediatric palliative care.


Author(s):  
Vanessa Battista ◽  
Gina Santucci

Pediatric palliative care (PPC) is an essential service for children living with chronic and/or life-threatening conditions. Pediatric palliative care aims to improve the quality of life of children with life-threatening illnesses and their families. Pediatric palliative care can be provided in tertiary care facilities, community health centers, and in children’s homes. Terminially ill children die in the hospital and at home, necessitating more home-based PPC and hospice services. A variety of factors must be considered when caring for children and families in their home setting. It is essential to proactively identify and manage pain as well as other symptoms. There should also be attention paid to other areas important to the child: psychological, social, or spiritual domains of care.


2002 ◽  
Vol 18 (1) ◽  
pp. 59-67 ◽  
Author(s):  
Betty Davies ◽  
Paul Brenner ◽  
Stacy Orloff ◽  
Liz Sumner ◽  
William Worden

Hospice and palliative care principles mandate clinicians to provide “total” care to patients and their families. Such care incorporates not only physical, emotional, and psychosocial care, but spiritual care as well. Even though considerable attention has been directed to spiritual issues for adult patients in hospice and palliative care, spirituality in pediatric palliative care has been virtually neglected. The need for guidelines to assess spirituality in this population was identified as a priority issue by members of a subcommittee of the Children's International Project on Children's Palliative/Hospice Services, created under the auspices of the National Hospice Organization. Committee members, based on their clinical, research, and personal experiences, identified several aspects relevant to spirituality in general, and to spirituality in pediatric palliative care in particular, and developed guidelines for clinicians in pediatric palliative care. The purpose of this paper is to share the results of this committee's work and, in particular, to present their guidelines for addressing spiritual issues in children and families in pediatric hospice and palliative care.


2021 ◽  
Author(s):  
Arshia Madni ◽  
TPPCR

This TPPCR commentary discusses the 2020 paper by Miller et al., “The use of telemedicine for home-based palliative care for children with serious illness: a scoping review” published in Journal of Pain and Symptom Management


Children ◽  
2018 ◽  
Vol 5 (9) ◽  
pp. 120 ◽  
Author(s):  
Stefan Friedrichsdorf ◽  
Eduardo Bruera

Among the over 21 million children with life-limiting conditions worldwide that would benefit annually from a pediatric palliative care (PPC) approach, more than eight million would need specialized PPC services. In the United States alone, more than 42,000 children die every year, half of them infants younger than one year. Advanced interdisciplinary pediatric palliative care for children with serious illnesses is now an expected standard of pediatric medicine. Unfortunately, in many institutions there remain significant barriers to achieving optimal care related to lack of formal education, reimbursement issues, the emotional impact of caring for a dying child, and most importantly, the lack of interdisciplinary PPC teams with sufficient staffing and funding. Data reveals the majority of distressing symptoms in children with serious illness (such as pain, dyspnea and nausea/vomiting) were not addressed during their end-of-life period, and when treated, therapy was commonly ineffective. Whenever possible, treatment should focus on continued efforts to control the underlying illness. At the same time, children and their families should have access to interdisciplinary care aimed at promoting optimal physical, psychological and spiritual wellbeing. Persistent myths and misconceptions have led to inadequate symptom control in children with life-limiting diseases. Pediatric Palliative Care advocates the provision of comfort care, pain, and symptom management concurrently with disease-directed treatments. Families no longer have to opt for one over the other. They can pursue both, and include integrative care to maximize the child’s quality of life. Since most of the sickest children with serious illness are being taken care of in a hospital, every children’s hospital is now expected to offer an interdisciplinary palliative care service as the standard of care. This article addresses common myths and misconceptions which may pose clinical obstacles to effective PPC delivery and discusses the four typical stages of pediatric palliative care program implementation.


10.2196/16248 ◽  
2020 ◽  
Vol 22 (2) ◽  
pp. e16248 ◽  
Author(s):  
Heidi Holmen ◽  
Kirsti Riiser ◽  
Anette Winger

Background Children and families in pediatric palliative care depend on close contact with health care personnel, and electronic health (eHealth) is suggested to support care at home by facilitating their remote interactions. Objective This study aimed to identify and review the use of eHealth to communicate and support home-based pediatric palliative care and appraise the methodological quality of the published research. Methods We conducted a convergent, systematic mixed methods review and searched Medical Literature Analysis and Retrieval System Online (Medline), EMBASE, PsycINFO, Cochrane Library, Cumulative Index to Nursing and Allied Health Literature (CINAHL), Web of Science, and Scopus for eligible papers. Studies evaluating 2-way communication technology for palliative care for children aged ≤18 years and applying quantitative, qualitative, or mixed methods from 2012 to 2018 were eligible for inclusion. Quantitative and qualitative studies were equally valued during the search, screening, extraction, and analysis. Quantitative data were transformed into qualitative data and analyzed using a thematic analysis. Overall, 2 independent researchers methodologically appraised all included studies. Results We identified 1277 citations. Only 7 papers were eligible for review. Evaluating eHealth interventions in pediatric palliative care poses specific methodological and ethical challenges. eHealth to facilitate remote pediatric palliative care was acknowledged both as an intrusion and as a support at home. Reluctance toward eHealth was mainly identified among professionals. Conclusions The strengths of the conclusions are limited by the studies’ methodological challenges. Despite the limitless possibilities held by new technologies, research on eHealth in home-based pediatric palliative care is scarce. The affected children and families appeared to hold positive attitudes toward eHealth, although their views were less apparent compared with those of the professionals. Trial Registration PROSPERO CRD42018119051; https://tinyurl.com/rtsw5ky


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