Literature Review

International consensus on sleep problems in pediatric palliative care: Paving the way[International] Sleep Medicine; by Anna Mercante, Judith Owens, Oliviero Bruni, Magda L. Nunes, Paul Gringras, Shirley Xin Li, Simonetta Papa, Ulrika Kreicbergs, Joanne Wolfe, Boris Zernikow, Ana Lacerda, Franca Benini, on behalf of the Pediatric Sleep and Palliative Care Group; 7/24Sleep problems constitute a common and heterogeneous complaint in pediatric palliative care (PPC), where they often contribute to disease morbidity and cause additional distress to children and adolescents and their families already facing the burden of life-threatening and life-limiting conditions. Despite the significant impact of sleep problems, clinical evidence is lacking... This study addresses the need to personalize sleep medicine’s approach to the palliative care setting and its peculiarities. It provides the first international consensus on sleep problems in PPC and highlight the urgent need for global guidance to improve sleep-related distress in this vulnerable population and their caregivers. Our findings represent a crucial milestone that will hopefully enable the development of guidelines in the near future.Publisher's Note: I am grateful that sleep issues are being studied and discussed more often, as they can be terribly disruptive to patients and family members.

Swiss couple walk 1,000 miles to Perranporth in Cornwall to support children's hospices Voice; by Andrew Townsend; 6/29/24 A couple have walked 1,000 miles from Switzerland to Cornwall to raise money for children’s hospices. Retired Swiss professor Rainer Zust, 65, and his partner Stephanie, and their two dogs Leo and Nettie covered the distance in 69 days, finishing the trek in Perranporth. Whilst walking in the UK, the couple raised around £1,000 for Children’s Hospice South West (CHSW). And while in Cornwall they visited the Little Harbour Children’s Hospice at St Austell.  

Children’s Healing Center opens in Ypsilanti Township in July DBusiness Magazine, Detroit, MI; by R. J. King; 6/24/24 The Children’s Healing Center will open its doors in Ypsilanti Township on July 8, offering children with weakened immune systems and their families a safe and clean place to play. ... The facility is the Children’s Healing Center’s second location after first opening its doors in Grand Rapids in 2015. The new state-of-the-art 11,000-square-foot facility features a hospital-grade environment where families can engage in a diverse range of innovative programming free of charge. “It has always been our goal to open a second location of the Children’s Healing Center,” says Amanda Barbour, founder and CEO of Children’s Healing Center. “The kids, young adults, and families who rely on us have very few options for social interaction, so we provide an invaluable outlet to build friendships and fight the effects of isolation and loneliness. The Children’s Healing Center states it is a first-of-its-kind year-round recreational facility for kids and young adults aged 0-26 with weakened immune systems and their families that provides opportunities for play, programming, education, and socialization. 

Children’s hospices risk being ‘hugely reduced’ due to funding and cost issues Jersey Evening Post - UK News; by UK News; 6/19/24 Children’s hospice services are at risk of being “hugely reduced” amid a lack of long-term sustainable funding and rising costs, a charity has warned. ... Some 66.7% of children’s hospices said this was due to a hike in energy bills, while 86.1% said it was due to higher costs associated with recruiting and retaining staff. According to the report, some 54% of children’s hospices in the UK ended the 2023/24 financial year in a net deficit. Together for Short Lives extrapolated the figure across all 39 hospice organisations to estimate a total shortfall of £8.5 million.

NeoTalk: Communication skills training for neonatal cliniciansAmerican Journal of Hospice and Palliative Medicine; by Katherine F. Guttmann, MD, Malorie Meshkati, MD, Julia Frydman, MD, Cardinale B. Smith, MD, PhD, Lindsay Dow, MD, and Andrea S. Weintraub, MD; 6/24A multi-disciplinary cohort of NICU providers endorsed increased confidence in key communication skills but not increased skill application 2-months post-course completion. While a single course can successfully teach skills, additional exposure may be necessary to build new communication habits. Our experience developing NeoTalk helped elucidate some of the ways in which conversations about seriously ill infants may be different from conversations about seriously ill adults.

Procedural interventions for terminally ill children – Are we aiding palliation?Journal of Palliative Care; by Hannah Phillips, MD, Sarah Perry, MS, Laura A Shinkunas, MS, Erica M Carlisle, MD; 5/24Many children undergo surgery or an invasive procedure during their terminal hospital admission. The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. ... 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. ... Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population.

Providing culturally sensitive palliative care to children with cancer: A conversation with Justin Baker, MDThe ASCO Post; by Rikki Camarillo; 5/16/24In the fall of 2023, Justin Baker, MD, took on the role of Chief of the Division of Quality of Life and Pediatric Palliative Care and Director of the Quality of Life for All Program, Stanford Medicine Children’s Health, Stanford, California. He formerly worked at St. Jude Children’s Research Hospital, Memphis, as Chief of the Quality of Life and Palliative Care Division. The ASCO Post recently spoke with Dr. Baker about his new role in palliative care for the treatment of children with cancer at Stanford Children’s and the importance of culturally sensitive care for patients and their families.

Home-based pediatric hospice and palliative care provider visits: Effects on healthcare utilization The Journal of Pediatrics; by Steven M. Smith, MD; Daniel H. Grossoehme, DMin; Kate Cicozi, MD; Audrey Hiltunen, MD; Catherine Roth, MPH, CCRP; Gwendolyn Richner, BA; Stephani S. Kim, PhD, MPH; Nguyen K. Tram, PhD; Sarah Friebert, MD; May 2024 journal issue Objective: This hypothesis-generating study sought to assess the impact of home-based hospice and palliative care (HBHPC) provider home visits (HV) on healthcare use.  Conclusion: HBHPC provider HVs were associated with fewer inpatient admissions, hospital days, and intensive care unit days, and increased clinically relevant phone calls and phone calls before emergency department visit. These findings indicate that HBHPC HV may contribute to decreased inpatient use and increased use of the HBHPC team.

An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing International Journal of Palliative Nursing; by Mandy J Brimble, Sally Anstey, Jane Davies, Catherine Dunn; 4/17/24Aim: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. Findings: Three overarching, cross-cutting themes were identified—purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction.

Employing telehealth to ease the hospice transition for kids with cancer mHelathIntelligence, by Anuja Vaidya; 4/23/24 ... In a study published in the Journal of Pain and Symptom Management last month, Children's Healthcare of Atlanta researchers detailed a telehealth-based intervention the hospital has employed to ease the transition to hospice for young cancer patients and their families. ... The intervention includes a series of coordinated telehealth visits during the first month of hospice enrollment for children or young adults, 29 or younger, with cancer. ... Hospice nurses participating in the pilot received a tablet equipped with mobile WiFi cellular service that they would take to the family's home, which enabled the [hospital/pediatric specialty] nurses and families to join the call. ... The most important finding of the study was that coordinated telehealth visits between the hospital, hospice, and the families during the first month of hospice enrollment were feasible and acceptable to all participants.

Defining metrics for assessing end-of-life care quality in children with cancer Physician's Weekly; 4/16/24 In this study, the researchers sought to define the target population for applying newly developed quality measures in end-of-life (EOL) care for children with cancer. Through a series of nominal groups, panelists addressed the question: “Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?” ... A team of pediatric oncology and palliative care clinician-scientists developed a coding structure to analyze responses and identify associated themes and subthemes. 

HopeHealth’s expanding scope of pediatric hospice, palliative services Hospice News, by Holly Vossel; 4/8/24 HopeHealth has been growing its pediatric hospice and supportive care service lines in recent years to address a range of unmet needs among seriously ill children and their families. The nonprofit health system serves Rhode Island and southeastern Massachusetts. ... Hospice News recently sat down with pediatrician Dr. Rebecca MacDonell-Yilmaz, medical director of HopeHealth’s pediatric supportive services. 

The HAP Foundation, CLHPN partner to address unmet pediatric hospice needs Hospice News, by Holly Vossel; 4/5/24The HAP Foundation is partnering with the Child Life Hospice and Palliative Network (CLHPN) to improve awareness of and access to child life services among seriously ill youths and their families. The HAP Foundation helps support research and education in hospice and palliative care. Through the partnership, the organization will help fuel CLHPN’s efforts to expand understanding and utilization of child life specialist services and their benefits for families facing terminal and chronic illness. Child life specialists can help address a range of unmet psychosocial, emotional and spiritual family needs, according to Alyssa Friedberg, CLHPN co-founder.