Literature Review

Long-term health care use among children surviving multiple organ dysfunctionJAMA Network Open; Robert Ohman, MD, MPH; Jerry J. Zimmerman, MD, PhD; 1/25Mortality outcomes of pediatric critical illness have improved over the last several decades, while concurrently the population of patients with technology dependency and complex chronic morbidities has continued to grow and the incidence of MOD [multiple organ dysfunction] has simultaneously increased. In the setting of declining critical illness mortality, pediatric outcomes research has broadened its scope to assess metrics beyond mortality, describing the trajectory of recovery from critical illness with measures of patient quality of life; physical, cognitive, and functional status; and family psychological and economic well-being. As the authors point out, assessment of the larger financial impact of this higher health care utilization on families themselves would be valuable future knowledge, as high health care utilization, appointments, and recurrent hospitalizations may detract from families’ ability to work, care for their other children, and attend to their own medical needs. Targeted support for families of survivors of MOD may be necessary to minimize these secondary impacts and to optimize outcomes for this vulnerable population of patients.

[Germany] Green hospice snails: Dresden bakeries support incurable children Archynewsy; 1/10/25 In Dresden, Germany, a heartwarming campaign is uniting bakeries and communities to support families facing the challenges of life-limiting illnesses in their children. Every February 10th, known as the "Day of Work for the Hospice for Children," participating bakeries offer delectable "green" treats, with a portion of their proceeds contributing to the invaluable work done by local children’s hospices. ... This campaign transcends mere fundraising; it acts as a powerful platform to shed light on the often-overlooked needs of families navigating the complex journey of caring for a child with a life-limiting illness.

A broader end-of-life-view: The need for hospice and palliative care extends beyond the elderly, as the patient population at Transitions LifeCare suggestsTriangle Business Journal, Raleigh, NC; by Connie Gentry; 2/7/25 Although the likelihood of developing cancer is highest for anyone over age 65, the American Cancer Society’s annual report on cancer statistics, released last month, noted increasing incidents of many cancer types among younger adults and women. ... But positive outcomes were also reported: The cancer mortality rate in the U.S. declined by 34 percent from 1991 to 2022 and, since 1970, cancer mortality in children 14 years and younger has declined by 70 percent and among adolescents ages 15 to 19 years it has dropped by 63 percent. ... Although the majority of their hospice patients are over the age of 75, Transitions LifeCare is seeing an increase in younger patients. Last year, roughly 9 percent of their hospice patients were under age 65, almost evenly divided between women and men.

Kate Middleton fingerpaints with children from hospice during royal visit[UK] Independent; by Barney Davis; 1/30/25The Princess of Wales laughed as she played with terminal children at a “lifeline” hospice. Kate Middleton joked about her “huge” hands as she left her print on the wall of the Ty Hafan children’s hospice in South Wales on Thursday. The future Queen, who confirmed earlier this month she is in remission from cancer, has become patron of the hospice as she continues her gradual return to public duties.

The Dorion Family Pediatric Center breaks ground in Mandarin Jacksonville Daily Record, Jacksonville, FL; by Dan Macdonald; 1/28/25 The hospice center is designed to expand care and convenience for children and their families. The Foundation of Community Hospice & Palliative Care broke ground Jan. 27 on the Dorion Family Pediatric Center, a pediatric hospice center in Mandarin. ... The space will allow for an expanded range of therapies and support services in a dedicated, pediatric-friendly setting. The facility will provide a centralized location that reduces travel time for the clinical team. Currently, caregivers travel to patients’ homes, the release said. ... The Dorion Family Pediatric Center is named in honor of the Dorion family, who are advocates for compassionate care. The family helped establish the organization. 

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.