Literature Review

Distress screening and pediatric palliative care referral: A retrospective case-control study in supportive cancer care deliveryJournal of Palliative Medicine; by Jonathan Ebelhar, Katherine Yeager, Jordan Gilleland-Marchak, Dio Kavalieratos, Zhulin He, Rebecca Williamson Lewis, Katharine E Brock; 9/26Pediatric palliative care (PPC) reduces distressing symptoms and improves quality of life for children with cancer and their caregivers. This study assesses whether patient and caregiver distress is associated with PPC referral. Conclusion: Patients reporting high distress had higher odds of PPC referral. Caregiver DT [distress thermometer] scores were not associated with PPC referral. High patient distress scores could serve as a screening criterion for PPC referral.

My dying daughter gasped in pain while medics argued at her bedside BBC Scotland News; by Iona Young; 10/22/26 In the days before her death, six-year-old Flora Gentleman was in pain and visibly distressed. But because she was autistic and non-verbal, she could not tell her parents what was wrong. After four years of living with neuroblastoma, an aggressive form of cancer, Flora had stopped responding to treatment. By December 2024 she was receiving palliative care at Edinburgh's Royal Hospital for Children and Young People. Despite being given the highest possible dose of pain relief, her mother, Stephanie Kent, said she could see her daughter "gasping and wincing in pain". According to Stephanie, disagreements between medical teams over how best to manage Flora's symptoms erupted into a heated discussion at her daughter's bedside.

[Lisbon, Portugal] Closing the gap: Nurses call for action to pediatric palliative careeHospice; by Joana Mendes; 10/12/26On 6 October 2026, the Lisbon School of Nursing at the University of Lisbon hosted the international webinar “Closing the Gap: A Nursing Call to Action for Pediatric Palliative Care”, bringing together 112 participants, predominantly Portuguese nurses, around a shared commitment: advancing equitable, accessible and high-quality perinatal, neonatal and pediatric palliative care.

Pediatric Concurrent Care Convening: A national conversation [Oct. 16, 10:00 – 11:30 MST]National Coalition for Hospice and Palliative Care; 8/26/26[Virtual] attendees will participate in a Q&A with Lisa Lindley, PhD, and Meaghann Weaver, MD, two experts on the current state of pediatric concurrent care. This national conversation will provide an overview of the current state of pediatric concurrent care and create an opportunity for participants to connect with colleagues from across the country, share experiences and challenges, and identify resources and supports that could help advance pediatric concurrent care in their states. [The convening is free, but there is a cap on attendance.]

Kendall Burrows Foundation works toward $1 million for pediatric care WMAR-2 ABC, Baltimore, MD; by Elsa M.; 9/20/26  The Kendall Burrows Foundation is encouraging Marylanders to make a difference in the lives of children and families facing serious medical challenges. Since 2015, the foundation has partnered with the Johns Hopkins Children's Center Harriet Lane Compassionate Care Program to help create supportive and healing environments for children receiving pediatric palliative care and for the families who care for them. ... This year, organizers are aiming to reach a significant milestone. The foundation reports that it has raised and donated $882,000 to date and hopes to surpass $1 million through continued community support.

Couple turned wedding into cancer fundraiser. How much did they raise? Akron Beacon Journal, Akron, OH; by Lauren Cohen; 9/26/26 ... Jon and Amber Kozesky got married at the Cleveland Metroparks Zoo Sept. 19, but the day meant much more to them than just exchanging vows. They set a goal to raise $100,000 for their pediatric cancer foundation, The Littlest Heroes, instead of accepting wedding gifts. The nonprofit provides financial and emotional support to families of kids receiving cancer treatment in Northeast Ohio. As of Sept. 23, the Fairview Park couple is about halfway to their goal. Numerous people have given pledges to donate, and companies across the nation are reaching out to help get to the goal.

For families facing the unthinkable, NPHI launches new Guide to help navigate a child’s serious illness National Partnership for Healthcare and Hospice Innovation (NPHI), Washington, DC; Press Release; 9/14/26 ... Fewer than one in 10 children who die in the United States receive hospice care, underscoring an important opportunity to better support families facing a child’s serious illness. The National Partnership for Healthcare and Hospice Innovation (NPHI), the national voice for nonprofit hospice and advanced illness care, recently released the Advanced Pediatric Care™ Patient & Caregiver Guide — a free national resource created by pediatric hospice and palliative care experts from nonprofit providers across the country to give families something the system has never reliably given them: national clear, trustworthy guidance when a child is seriously ill. [Download the Guide]

[United Kingdom] Bristol Airport charity ride raises record £110,000 for Children’s Hospice South West TravelPRNews, Bristol, UK; by Sheryl Rivera; 9/15/26Bristol Airport has turned a two-day cycling challenge into its biggest charity fundraiser to date, with 38 employees and business partners raising £110,000 for Children’s Hospice South West (CHSW). The riders completed a 180-mile journey from Tenby in Pembrokeshire to Bristol Airport on September 10 and 11, covering a mix of roads, coastal sections, countryside and gravel tracks. ... The fundraising total also surpassed the event’s original aim and became the largest amount Bristol Airport says it has raised through a single charity event. ... While the main group was on the road, airport colleagues recreated the challenge inside the terminal by cycling the equivalent distance on exercise bikes in the departure lounge.Editor's Note: Creative. Community engagement. Enthusiasm. Successful. Read and be inspired.

How Latine families navigate pediatric loss amid broken systems: A qualitative study with caregivers and providers using Liberation PsychologyAdvances in Nursing Science; by Patricia Buzelli, Tolu O Oyesanya, Angelli Aguilar, Rosa M Gonzalez-Guarda; 8/26This study explored the challenges and strengths shaping Latine families' experiences of pediatric loss in the United States context. Eighteen semistructured interviews with healthcare providers (n = 7) and bereaved Latine caregivers (n = 11) were carried out using an integrated qualitative descriptive and Liberation Psychology approach. Four themes emerged that are heavily shaped by individual and contextual factors: (1) Unsupportive and hegemonic systems, (2) caregiver and provider discordance regarding end-of-life care, (3) caregiver identity transcendence in the "natural distress of grief," and (4) supportive networks and their limitations. Results highlight sociocultural realities that inform needed structural, policy, and practice changes.

Alliance Pediatric e-Journal: How cultural or religious differences affect care The National Alliance for Care at Home; by the Alliance’s Pediatric Advisory Council; multiple issues, most recent August 2026 The Pediatric e-Journal is the world’s longest consistent pediatric palliative and hospice care publication, continuously published since 2002. ... Welcome to the 84th issue of our Pediatric e-Journal. The focus of this issue is on topics related to cultural or religious differences and how they affect pediatric hospice and palliative care. Cultural and religious differences are often deeply imbedded in the children, adolescents, and family members we serve, not to mention the professionals and volunteers who provide such services. In addition, they are the special province of chaplains and other clergy who help to provide pediatric hospice and palliative care.

Detroit teen’s cancer death sparks 5K walk and new Georgia diploma law hoodline, Detroit, MI; by Jerry McAllister; 8/16/26 A Detroit family walked the riverfront near their old neighborhood this week to honor a 15-year-old whose fight with a rare bone cancer ended in his death nearly two years ago but has since reshaped state law hundreds of miles away in Georgia. GaKobe Milton, who once lived in Detroit before his family relocated to Atlanta, was diagnosed with osteosarcoma at age 13 in 2022 and died on December 10, 2024, after a two-year battle with the disease. His mother, Kuleesha Milton, brought his memory back to the city he called home with a 5K walk at Alfred Brush Ford Park along the Detroit Riverfront. ... Georgia lawmakers signed the GaKobe Milton Act into law in his honor, and Governor Brian Kemp signed House Bill 1284 on May 5, according to the Georgia General Assembly. The law requires local school boards to petition the State Board of Education within 14 days for graduation requirement waivers, allowing schools to award diplomas to terminally ill students receiving end-of-life care, or posthumously if necessary. The act waives completion of all remaining high school graduation requirements for eligible terminally ill students.

Hospice of Michigan receives more than $20k in donations following Josh & Jase visit ABC-13, Grand Rapids, MI; by Mary Dupuis; 8/14/26 The viral social media duo Josh & Jase have helped raise more than $20,000 for Hospice of Michigan's statewide pediatric hospice program this summer. The fundraising campaign was launched in support of the Jo Elyn Nyman Pediatric Hospice Endowment Fund. ... Josh Cauldwell-Clarke and Jase Riley became famous on social media for their travel videos reacting to American food, culture and exciting experiences. ... During their time in Grand Rapids, Josh and Jase spent time with pediatric hospice patients and their families at Hospice of Michigan. After their social media post about the visit, more than 350 donations flooded in to Hospice of Michigan from across the country. 

Josh & Jase bring toys to Hospice of Michigan’s youngest patients, kick off special fundraiser MLive, Grand Rapids, MI; by Tanda Gmiter; 8/3/26 The British TikTok duo Josh & Jase are known for encouraging goodwill as they travel around our state. Last winter’s trek across Michigan saw their tour of Mel Trotter Ministries raise thousands of dollars for the shelter’s programs. This week, they invited their huge social media audience to see the good work being done by Hospice of Michigan, a non-profit that helps those near death - and their families. Josh & Jase visited some of the youngest patients and their families in what turned out to be an emotional day for the social media stars. “Today was one of those days that will stay with us forever,” they wrote on their Facebook account on Friday. ... The duo said they were impressed at how Hospice of Michigan’s staff can be there to support not just the patient, but entire families during what can be a very difficult and heartbreaking time.