Literature Review

[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.

If my dying daughter could face her mortality, why couldn’t the rest of us? DNYUZ, appearing first in The New York Times; Ms. Wildman; 11/25/24 The first week of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even. In reality, we were at the end of a reprieve. Orli’s liver cancer had by then been assaulted by two years of treatments — chemotherapy, a liver transplant, more chemotherapy, seven surgeries. Now new metastases lit up a corner of one lung on scans, asymptomatic but foreboding. We asked her medical team if we might show her a bit of the world before more procedures. Our oncologist balked. Hence, this brief weekend away. When we arrived at the beach Orli ran directly to the water, then came back and stretched out on a lounge chair. She turned to me and asked, “What if this is the best I ever feel again?” Three hundred and seventy-six days later, she was dead. In the time since she left us, I have thought often of Orli’s question. All that spring, Orli asked, pointedly, why did we think a cure was still possible, that cancer would not continue to return? Left unspoken: Was she going to die from her disease? It was a conversation she wanted to have. And yet what we found over the wild course of her illness was that such conversations are often discouraged, in the doctor’s office and outside it. ... [Click on the title's link to continue reading this profound story.]Editor's note: While families are gathered for Thanksgiving, many health changes will be observed since this time last Thanksgiving, with countless unknowns to unfold until Thanksgiving next year. Tune into the wide scope of conversations that people do want to have, don't want to have, and--perhaps--that your own family needs to have, with grace and care for all.

Suicide deaths among adolescent and young adult patients with cancerJAMA Network Open; Koji Matsuo, MD, PhD; Christina J. Duval, BA; Briana A. Nanton, BS; Jennifer A. Yao, BA; Erin Yu, BS; Christian Pino, MD; Jason D. Wright, MD; 11/24The overall cancer incidence among adolescent and young adult (AYA) patients is increasing at an alarming rate in the US largely driven by thyroid cancer. Although cancer mortality continues to decrease among AYA patients, those who survive cancer are at elevated risk for emotional distress, mental health problems, and suicide. Together with the population-level increase in the US suicide death rate, the results of this assessment call for attention focused on the increasing suicide death rate among AYA patients with cancer, particularly male individuals. The proportion of AYA patients with cancer of thyroid, testis, or cutaneous melanoma who had a suicide death was greater than 2%, and they most benefit from a psychosocial and mental health evaluation. Because this study noted that many suicide deaths among these AYA patients with cancer occur years after the cancer diagnosis, long-term care and support for cancer survivors is recommended.

Healthcare utilization in pediatric cancer patients near the end-of-lifeAmerican Journal of Hospice and Palliative Medicine; by James P. Kelly, Daniel V. Runco, James E. Slaven, Jason Z. Niehaus; 10/24Describe the healthcare utilization in the last 60 days of life in pediatric patients with cancer who died at home under hospice care and those that died in the hospital. Patients dying under hospice care spent a median of 44 days at home. Patients dying in the hospital spent a median of 30.5 days in the hospital, 10.5 days in the intensive care unit, and underwent 3.5 procedures requiring anesthesia. 45% of those that died in the hospital were compassionately extubated. Conclusion: For those dying with a cancer diagnosis, hospice care can allow for significant time at home with minimal healthcare while those dying in the hospital do spend a significant time in the hospital.