Literature Review

UNC Health, Duke Health to build children's hospital Modern Healthcare; by Alex Kacik; 1/28/25 UNC Health and Duke Health will build a freestanding children’s hospital in the Piedmont, North Carolina, area. The academic health systems plan to build a 500-bed children’s hospital, a pediatric outpatient center and a children’s behavioral health facility. The project, fueled by a $320 million investment by the state, is set to break ground in 2027 and take six years to complete, the organizations said in a Tuesday news release. 

Concurrent Care Collaborative a safety net for pediatric patients Noozhawk, Santa Barbara, CA; by Easter Moorman; 1/26/25 Partners for Kids has initiated Santa Barbara County’s first Pediatric Concurrent Care Collaborative designed to offer comprehensive, compassionate, and coordinated care to seriously ill children from birth to 21 years of age. Spearheaded by Kieran Shah, president/CEO of VNA Health, and Rebecca Simonitsch, Quality Initiatives Program manager for Cottage Health, nine local organizations have joined to create a safety net for pediatric patients and their families to help them receive care close to home. The groups are: CenCal Health, Central Coast Home Health & Hospice, Cottage Children’s Medical Center, Dignity Health, Hearts Aligned, Herencia Indígena, Hospice of Santa Barbara, Teddy Bear Cancer Foundation, and VNA Health. 

Abigail E. Keller Foundation's Teddy bear drive brings Valentine's cheer to young patients CBS Austin, TX; by We Are Austin; 1/23/25 Valentine's Day is getting a little sweeter for children spending the holiday in the hospital, thanks to the Abigail E. Keller Foundation's annual teddy bear drive. Now in its sixth year, the initiative aims to spread love and comfort through cuddly companions. Melissa Keller, co-founder and president of the foundation, said the drive [describes,] "Abby passed away in February of 2019, ... Abby was full of life and joy, and she brought so much life and joy to everyone that she met. We decided on that first anniversary, we were going to collect teddy bears and take them to the hospital. And we did." ... Keller says "We support medically fragile children and their families throughout their journey and at end of life, we, support our foundation, supports them in, a couple of ways. We we help them through financial assistance. We do care baskets for families going into hospice. We do birthday boxes for children in hospice."

[Irelan] How digital storytelling can support families of very ill children RTE, Ireland; by Veronica Lambert and Razieh Safarifard; 1/17/25 Imagine a family gathered around a young child's bed at home or in the hospital, facing the heart-wrenching reality that their time together is limited. The moments they share now - the stories told, songs sung, laughter, and tears - are more precious than ever. But how can these memories be preserved, not just for the present but for a lifetime? Memory-making activities provide a way to capture these moments, offering comfort during and after their journey through palliative care. In Ireland, the need for such interventions is growing, as more children live with life-threatening conditions and families often find themselves without adequate support in these difficult times. Our new project addresses this gap with a digital storytelling memory-making programme tailored to the unique cultural and practical needs of Irish families.

A call to action for revisiting goals of care discussions with adolescents and young adults with cancerJAMA Network Open; Erica C. Kaye, MD, MPH; 12/24In “Evolution in Documented Goals of Care at End of Life for Adolescents and Young Adults With Cancer,” Mastropolo et al addresses an important and understudied question regarding whether and how goals of care (GOC) change for adolescents and young adults (AYAs) with cancer as death approaches. Intuitively, the study findings showed that AYAs with cancer had increased documentation of palliative GOC as they approached end of life. More specifically, 1 in 5 AYAs had GOC documentation that transitioned from nonpalliative goals in the early or middle periods to palliative in the final 30 days before death. While perhaps unsurprising, the clinical relevance of this finding is significant: a sizeable minority of AYAs may change their GOC during the final weeks of life, underscoring the importance of revisiting GOC conversations as death approaches to align medical interventions with a patient’s wishes. 

Re-imagining childhood grief: Children as active agents in a transactional processOmega-Journal of Death and Dying; Ceilidh Eaton Russell, Meg Chin, Georg Bollig, Cheryl-Anne Cait, Franco A. Carnevale, Jody Chrastek, Bianca Lavorgna, Catriona Macpherson, Stacy S. Remke, Lies Scaut, Jane Skeen, Regina Szylit, Camara van Breemen, Ronit Shalev; 12/24While undoubtedly, the death of a parent or sibling causes considerable distress for children, the transactional model argues that an individual’s ability to adapt to challenges and problems arises from the transactions - interactions - that occur between them and their environment (Sameroff, 2009). After a loss, it is critical to be aware of the fact that children do grieve, that they impact and are impacted by those around them, reflecting influences on their social environments at any and every age. Their impressions, the feedback they receive, the messages they interpret about what is and is not deemed acceptable by those around them, can have immediate and life-long influences on their thoughts, behaviours, emotional and physical wellbeing. We propose that rather than placing the burden solely on children to seek support, adults have responsibilities to engage in a collaborative process whereby children have opportunities to express their interests and needs.

[Wales] Inside a children's hospice, a life-affirming and laughter-filled place that offers so much WalesOnline; by Taite Johnson; 12/29/24 When most people think of a children's hospice they often expect it to be a sombre place filled with sadness. But after spending some time at Ty Hafan I found it's actually quite the opposite. Laughter fills the halls as families make everlasting memories for themselves – and potentially the last for their child. Ty Hafan's hospice, overlooking the serene view of the sea in Sully in the Vale of Glamorgan, has been providing essential end-of-life care for children in a safe space in Wales for 25 years. It is often described at a place you wish you didn't need but you are glad to have.

Evolution in documented goals of care at end of life for adolescents and younger adults with cancerJAMA Network Open; Rosemarie Mastropolo, Colin Cernik, Hajime Uno, Lauren Fisher, Lanfang Xu, Cecile A Laurent, Nancy Cannizzaro, Julie Munneke, Robert M Cooper, Joshua R Lakin, Corey M Schwartz, Mallory Casperson, Andrea Altschuler, Lawrence Kushi, Chun R Chao, Lori Wiener, Jennifer W Mack; 12/24Little is known about the nature of change in goals of care (GOC) over time among adolescents and younger adult (AYA) patients aged 12 to 39 years with cancer near the end of life. Understanding how GOC evolve may guide clinicians in supporting AYA patients in making end-of-life decisions. In this cross-sectional study of AYA patients who died of cancer, palliative goals were rarely documented before the last month of life, highlighting the need for timely and ongoing GOC discussions.

Stakeholder perspectives on randomized clinical trials for children with poor-prognosis cancersJAMA Network Open; Nicholas Bird, MSc; Nicole Scobie; Pablo Berlanga, MD; Patricia Blanc, MBA; Vickie Buenger, PhD; Quentin Campbell-Hewson, MBChB; Michela Casanova, MD; Steven DuBois, MD; Julia Glade Bender, MD; Ann Graham; Delphine Heenen, LLM; Christina Ip-Toma, BSc; Donna Ludwinski, BSChem; Lucas Moreno, MD; Donna Neuberg, ScD; Antonia Palmer, MASc; Xavier Paoletti, PhD; Willemijn Plieger-van Solkema, LLM; Gregory Reaman, MD; Teresa de Rojas, MD; Claudia Rossig, MD; Anja Schiel, PhD; Sara Wakeling, BA; Gilles Vassal, MD; Andrew Pearson, MD; Leona Knox, BSc; 12/24In poor-prognosis children’s cancers, new therapies may carry fresh hope for patients and parents. However, there is an absolute requirement for any new therapy to be properly evaluated to fulfill scientific, regulatory, and reimbursement requirements. Randomized clinical trials (RCTs) are considered the gold standard, but no consensus exists on how and when they should be deployed to best meet the needs of all stakeholders. The agreed-upon workshop conclusions provide a basis for key considerations while undertaking future drug development activities for children with poor-prognosis cancers, ensuring that the needs and perspectives of all stakeholders are factored in from the outset.

Supporting grieving kids during the holiday season: Susan Hamme Cleveland.com, Cleveland, OH; Guest columnist Susan Hamme, director of grief services for Hospice of the Western Reserve ... Childhood grief is tricky no matter the time of year, but the holidays can be a time of especially heightened emotion. The sights and sounds of the season can be triggers for children and adults alike. Combine that with an awareness that things will be very different without your special person, and you have the perfect recipe for emotional meltdowns and miscommunication all around. While it may be impossible to avoid this altogether, there are things you can do to lessen the stress and build in moments of peace and celebration.

Holiday joy for children in hospice: Inside the North Pole ‘Fantasy Flight' at Dulles NBC Washington News4; by Joseph Olmo; 12/7/24 Early on Saturday morning, the crowd of almost 100 kids was buzzing with excitement as they waited to board their "North Pole"-bound flight out of Dulles International Airport. Some of the kids wore masks. Others were in wheelchairs, walked with crutches, or had lost their hair. Many are patients with Alexandria nonprofit Children's Hospice International (CHI) -- and all, though they may not know it, were celebrating what could be their last holiday with their families. It's a sobering fact that seems at odds with the joy and enthusiasm aboard the Boeing 777 airplane. But as United Airlines said in the press release, that's exactly the point of the flight. "Come join us as we fly some magic into the lives of children who need it most this holiday season," United said. And magic was provided. Flight attendants and pilots took their job very seriously as they guided passengers to their seats for the flight to NTP: North Pole International, of course. "Did we already write our letters to Santa?" asked one flight attendant, as she walked a family through the tinsel-decorated tunnel to the plane. "Yes," a tiny voice replied. The flight, begun at Dulles 34 years ago in 1990, is an annual event for children battling life-threatening illnesses, and their families. [Click on the title's link to continue reading this story.]

Goals of surgical interventions in youths receiving palliative careJAMA Network Open; Danielle I. Ellis, MD, MTS; Li Chen, MS; Samara Gordon Wexler, BA; Madeline Avery, MPH; Tommy D. Kim, MD; Amy J. Kaplan, BS; Emanuele Mazzola, PhD; Cassandra Kelleher, MD; Joanne Wolfe, MD, MPH; 11/24In this cohort study of 197 youths receiving palliative care, interventions were performed with goals of helping youths feel better and live longer and for the purposes of diagnosis, cure and repair, and assistive technology more so than for symptom support or as a temporizing measure. Youths with more acute illnesses underwent the most curative and repair interventions (particularly in the early postdiagnosis period), whereas those with more chronic illnesses underwent most of the supportive interventions. These findings suggest that conversations using the proposed framework concerning goals and purposes of surgical intervention may facilitate goal-concordant, high-quality care for youths with serious illness.