Literature Review

Where comfort and nutrition meet: A case series of children with severe neurologic impairment receiving home parenteral nutrition at the end of lifeNutrition in Clinical Practice; by Dana Steien, Erin Alexander, Molissa Hager, Andrea Armellino, Megan Thorvilson; 9/25Increasingly, home parenteral nutrition (HPN) ... is used for intractable feeding intolerance (IFI), which can occur near the end of life (EOL) in children with severe neurological impairment (SNI). [Four cases were retrospectively examined and we] found that the pediatric palliative care team (PPCT) was involved in all cases during HPN decision-making and planning. The pediatric nutrition support team (PNST) and PPCT collaborated to provide individualized, goal-directed care. All [patients] were enrolled in hospice while receiving HPN. HPN at EOL requires careful ethical consideration, particularly of autonomy because families often find comfort in providing nutrition.

Pulse check: Status update on pediatric palliative and hospice community-based coverageJournal of Palliative Medicine; by Meaghann S Weaver, Alix Ware, Deborah Fisher, Betsy Hawley, Holly Davis, Lisa C Lindley, Steven M Smith, Conrad S P Williams, Tej Chana, Christy Torkildson; 9/25Half (49%) of [the country's surveyed hospice and palliative] organizations reported increasing the number of pediatric patients accepted into their care over the past five years. Programs are less likely to include perinatal (61%) patients compared to infants through young adults (94%). Trauma increased as a reason for pediatric enrollment. Nonmetro geographies are less likely to provide services for children. The pediatric palliative average annual census was 271, and the pediatric hospice average annual census was 74. The pediatric patient's average length of stay for palliative care was 154 days and for hospice was 96 days, [with] Medicaid (47%) [being] ... the most common form of reimbursement. Lack of trained personnel, low referrals, and funding were depicted as the most common barriers.

Palliative care remains underused among young adults with advanced cancer in U.S. American Cancer Society, Chicago, IL; 10/10/25 Although palliative care use has increased over time among young adults with advanced cancers in the United States, new research led by the American Cancer Society (ACS) found that utilization still remains very low. Palliative care focuses on improving the quality of life for individuals with serious or life-limiting illnesses. ... Researchers, led by Kewei (Sylvia) Shi, MPH, at the American Cancer Society, used the National Cancer Database to identify patients aged 18-39 who were newly diagnosed with stage-IV cancers. ... The study included a total of 76,666 patients. The percentage receiving any palliative care increased from 2.0% in 2010 to 4.8% in 2023.

Ethics of disclosure in pediatric end-of-life care American Nurse; by Adrianna Watson, PhD, RN, CCRN, TCRN, and Rachel Clement, BSN, RN; 9/30/25 An ethical case study analysis Takeaways:

Cook Children’s physician testifies in Jarvey trialTexomas, Wichita Falls, TX KFDX/KJTL; by Joshua Hoggard; 9/26/25AUTHOR’S NOTE: This story contains details from trial proceedings that include allegations of abuse against a child victim. Due to the content of this story, discretion is advised before reading. ...Hospice physician concludes first week of trial: After lunch, Carlton called Dr. J. Robert Parkey to the witness stand. Dr. Parkey works with United Regional Healthcare Systems and specializes in hospice medicine. ... Dr. Parkey testified that he provided care for the victim after he was born, noting the severe medical issues the child was born with, including an abnormal brain. ... Dr. Parkey testified that the victim “exceeded all expectations” of the Hospice care team by surviving, ... He testified that the team instructed Jarvey on how to properly care for the child once he transitioned from hospice care to home care. Dr. Parkey testified that if Jarvey had reached out to the Hospice team, plenty of resources would’ve been made available to her, but to his knowledge, Jarvey never contacted them regarding the care of her son.

How a novel coaching intervention is building resilience and hope in adolescents and young adults with advanced cancer: A conversation with Abby R. Rosenberg, MD, MS, MA The ASCO Post; by Jo Cavaloo; 9/15/25 Each year, nearly 90,000 adolescents and young adults (AYAs; aged 15–39) are diagnosed with cancer, and approximately 9,300 die of the disease. ... AYAs are at increased risk for developing adverse long-term side effects from cancer and/or its treatment, including chronic conditions, secondary cancers, infertility, poor psychosocial health, and financial toxicity. ... The findings from a recent randomized phase III clinical trial investigating a novel resilience coaching intervention for AYA patients with advanced cancer are showing promising results in improving feelings of resilience and hope, as well as longer-term improvement in quality of life for these patients. ... In a wide-ranging interview with The ASCO Post, Dr. Rosenberg discussed the psychosocial impact of cancer on AYA cancer survivors, the results of the PRISM-AC study, and how AYA survivors are able to cope with having a terminal prognosis.

[Australia] The unmet needs of parents in pediatric palliative care: A qualitative systematic reviewJournal of Palliative Medicine; by Piyumi Senanayake, John Oldroyd; 8/25The goal of pediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. Thirteen studies were included [in this analysis]. Five major themes emerged: (1) pediatric palliative care services delivery and care coordination, (2) emotional, psychological, and spiritual support, (3) end-of-life care and bereavement support, (4) practical and daily living support, and (5) communication and information. Parents reported unmet needs in multiple dimensions and wished for more support in caring for their children. Given that all of the unmet needs align with already established pediatric palliative care standards, this review highlights the need for revised health care policies and practices that will lead to better implementation of these standards in practice.

[United Kingdom] 'The word hospice can be terrifying - but this is why it's giving us extra life' Verve Times, story from Wetherby, UK; by Craig Fedirighi; 8/27/25 The word “hospice” often conjures up images of people living out their final days in a room surrounded by nurses. But one mother says the hospice she goes to with her family has given them a life they could never have imagined would be possible. ... The 32-year-old said: “It’s one of those things where obviously the word hospice, everyone finds it scary. One thinks it’s the worst-case scenario, but it’s not. It’s giving you that extra life that you didn’t know you could have. ..."

Standardized assessment of patient experience in pediatric palliative care: A national collaborationJournal of Pain & Symptom Management; by Ashley K Autrey, Stacey Rifkin-Zenenberg, Tracy Hills, Jennifer Salant, Rachna May, Elliot Rabinowitz, Chelsea Heneghan, Laura Drach, Emma Jones, Rachel Thienprayoon; 7/25Use of patient reported outcome measures (PROMs) are crucial to providing patient-centered care. In 2022, the Pediatric Palliative Improvement Network developed a project to standardize the assessment of patient experiences with PPC [pediatric palliative care] services. Results: Patients/ families felt heard and understood and would recommend PPC. Standardized assessments of patient experience with PPC are feasible and informative. PROMs can ensure that PPC services meet patient needs, identify opportunities for improvement, and demonstrate value.

Building a strong foundation for pediatric palliative care in Connecticut Solomon Center for Health Law and Policy at Yale Law School, Targeted News Service; by Wendy Jiang, Elle  Rothermich, Eugene Rusyn; 8/12/25 The Solomon Center for Health Law and Policy at Yale Law School has released a white paper outlining concrete pathways for Connecticut to guarantee pediatric palliative care (PPC) from diagnosis--not only at end of life--while building a workforce equipped to deliver it statewide. The report highlights two foundational barriers: coverage that generally triggers only when a child receives a six-month terminal prognosis, and a shortage of clinicians trained in primary palliative skills, leading to delayed referrals and fragmented support for families facing serious childhood illness. The authors recommend two primary coverage strategies for the state.Editor's Note: Though written for Connecticut, this 42-page white paper from Yale provides excellent information and recommendations to examine for one's own state. Its sub-title is "Establishing a statewide coverage pathway & expanding primary palliative care education for pediatric clinicians."

Unity receives $30,000 grant from Otto Bremer Trust to expand palliative, hospice, and grief support for pediatric patients and their families The Chamber - Manitowoc County, Manitowoc, WI; Press Release; 8/6/25 Unity is proud to announce the award of a $30,000 grant from the Otto Bremer Trust to support and expand specialized pediatric palliative and hospice care services for children and their families in Northeast Wisconsin. This vital funding will also enhance grief support programs tailored to children and teens impacted by a death. “This generous investment from the Otto Bremer Trust enables us to provide compassionate, family-centered care during the most difficult of life circumstances,” says Alisa Gerke, Executive Director of Unity. “No child should face a serious illness alone, and no family should be left without support during grief. Thanks to this grant, Unity can serve more families with the expertise, tenderness, and commitment they deserve.”

Treasure Coast Hospice announces endowment for pediatric patients WQCS News, NPR for the Treasure Coast, Stuart, FL; by Justin Breckenridge; 7/19/25 The Treasure Coast Hospice Foundation has established a new endowment honoring local philanthropist Marlene K. Filer and her long-standing commitment to children’s health programs in Martin County. ... The Marlene K. Filer Celebrities Fore Kids Endowment will support children and families receiving care through the organization’s Little Treasures Pediatric Program. The program provides comprehensive support for children facing life-limiting illnesses. Filer, founder of Celebrities Fore Kids, has raised more than $3 million since 1997 to support children’s services throughout the region. 

Parental goals of care for children with rare diseases: A content analysis of pediatric advance care planning conversationsAmerican Journal of Hospice and Palliative Medicine; Tamiko Younge, MD, MSHS; Hailey Moore, MS; Jessica D. Thompkins, BSN, RN, CPN; Maureen E. Lyon, PhD; 7/25Caregivers and surrogate decision makers for children with rare diseases often make complex medical decisions with limited prognostic information specific to their child’s disease. Our objective was to describe goals of care as explored through advance care planning conversations among the high-risk and high-need community of families with children with rare diseases. We identified 13 goals of care themes: maintaining stability, being happy, moving the body, thriving along their own path, reducing interventions, living a long life, curing disease, avoiding complications, connecting with others, having a village, an understanding world, knowing our child, and partnering with our medical team. Conclusions:Parents of children with rare diseases have a multitude of holistic goals related to their child’s care. High-quality advance care planning conversations may help families articulate these goals.