Literature Review

Community puts together Christmas parade for 6-year-old in hospice care NBC WSAV-3, Savannah, GA; by Ava Cartes; 11/16/25 A Savannah community came together Saturday evening at a rally behind a little girl and her family. A six-year-old girl from the Willow Point neighborhood in Savannah recently entered hospice care, and after learning the news, her community came out to celebrate Christmas—her favorite holiday. Neighbors organized a display of Christmas lights and even a parade to show their support for the family.

The Valerie Fund pledges $3.5 million to establish new pediatric pain and palliative care program at Hackensack Meridian Joseph M. Sanzari Children’s Hospital News Wise, Hackensack, NJ; by Hackensack Meridian Health; 11/3/25 Hackensack Meridian Joseph M. Sanzari Children’s Hospital today announced a transformative, 5-year, $3.5 million commitment from The Valerie Fund to significantly expand its Pediatric Pain and Palliative Care Program. The landmark donation will establish The Valerie Fund Pediatric Pain and Palliative Care Program at the Joseph M. Sanzari Children’s Hospital, located at Hackensack University Medical Center in Hackensack, NJ, ... This new partnership will allow the hospital to care for more people annually, growing from approximately 1,750 to 3,500 patient visits. 

Clinician and parent perspectives on essential psychosocial care in pediatric cancerJAMA Pediatrics; by Kimberly S. Canter, Anne E. Kazak, Natalie Koskela-Staples, Michele A. Scialla, Kimberly Buff, Emily Pariseau, Victoria A. Sardi-Brown, Julia B. Tager, Lori Wiener; 10/25The Standards for Psychosocial Care for Children With Cancer and Their Families provide guidelines for evidence-based psychosocial care for children with cancer and their families. The Implementing the Standards Together: Engaging Parents and Providers in Psychosocial Care (iSTEPPP) study extends the standards through innovative collaborative research between clinicians and patient and family advocates, with the goal of widespread clinical implementation of standards that clinicians and parents or caregivers agree to be priorities. The 3 standards prioritized by parents and clinicians in this study offer insight into shared priorities for psychosocial care in pediatric cancer. However, misalignment on other priority standards (parental mental health, palliative care, and neurocognitive monitoring) highlights the differences in perception between parents and clinicians. Areas lacking agreement are a stark reminder of potential challenges when working to meet the holistic needs of children with chronic diseases and their families, as clinicians and parents may not agree on which needs are most important.

After her son’s painful death, a Cheshire mother highlights Connecticut’s pediatric hospice gap New Haven Register, Norwalk, CT; by Cris Villalonga-Vivoni; 10/26/25 Carolyn Torello believes that no parent should outlive their children, yet that became her reality. ...  As his condition worsened, the family faced his impending death without the support of pediatric palliative or hospice care. No provider, she said, seemed to know how to help or where to begin. He died at 15 years old in 2021. ... In 2020, an estimated 7,800 children in Connecticut were living with complex medical conditions that limited their life expectancy and could have benefited from palliative or hospice care, according to data from the National Survey of Children's Health. ... Torello thinks that if Michael had access to hospice care, he could have died with greater dignity, and their family could have focused on simply being together. ... Efforts to create a more formalized pediatric palliative care system have been underway since 2024, led by a state-commissioned working group that will make recommendations to the legislature on potential reforms.

Perinatal bereavement rooms: A narrative review of physical space in perinatal griefArchives of Gynecology and Obstetrics; by Ruby Castilla-Puentes, Azul F. Isidoro, Alfonsina Orosito, Samantha Eaton, Manuela Goyeneche, Liliana González Cabrales, Gabriela Santaella; 9/25 Perinatal loss is a profoundly complex form of grief, often linked to heightened risk of prolonged bereavement and adverse mental health outcomes. Perinatal grief rooms—private, supportive spaces within healthcare settings—aim to help families process their loss, spend time with their baby, and create meaningful memories in a respectful environment. Despite increasing recognition of the importance of bereavement care, dedicated grief rooms remain under-researched and inconsistently implemented. Advancing this field will require rigorously designed studies, development of design standards, and collaborative partnerships among healthcare providers, researchers, policymakers, and design experts to ensure equitable access to therapeutic spaces for grieving families.Assistant Editor's note: It strikes me that those experiencing grief of any kind, not just perinatal grief, could benefit from a grief room--a private, comfortable, inviting space--where loved ones can be together and grieve. Many hospice in-patient facilities have such a room. Wouldn't it be wonderful if every hospital, nursing home, assisted living facility, etc., had a grief room?! Perhaps hospice organizations could explore a multi-facility collaboration to make that happen. 

Pediatric home-based palliative care and hospice: Characterizing and comparing the populationsJournal of Pain and Symptom Management; by Ben Reader, Sibelle Aurelie Yemele Kitio, Steven M Smith; 9/25Home-based palliative care (HBPC) and hospice programs offer support for children with complex life-shortening conditions. However, there is little comparison of the characteristics and care trajectories of children and young adults enrolled in HBPC versus hospice, particularly across different age groups. Of 113 participants, hospice recipients were younger (median 2 vs. 7 years; ...), more likely to have an oncologic diagnosis, and had a higher mortality during the study period (69.6% vs. 22.1%; ...). HBPC participants had more hospital admissions, longer inpatient stays, and more outpatient visits. Subgroup analyses of children ≥1 year revealed diagnosis and code status differences, with hospice participants more likely to have 'allow natural death' orders and experience a code status change. 

Chico nurses at Enloe Health to hold rally to protest closure of home health and hospice units National Nurses United; Press Release by the California Nurses Association/National Nurses United; 10/1/25 ... Nurses are calling on the hospital to protect the health of some of Chico’s most vulnerable patients and maintain the essential services and end-of-life care provided by these units.  “For years, Enloe hospice stood alone in providing care for underserved Medi-Cal patients and for our youngest, most fragile patients—children at the end of life,” said Ruby Khoury, registered nurse in the hospice unit. “A vital, compassionate service is being taken away, and a hospital that once led with dignity and inclusivity in hospice care now faces a painful void. We nurses demand that the home health and hospice units remain open. Otherwise, the most vulnerable will suffer first: children, Medi-Cal patients, families without resources.”

Danbury hospice gets $2 million to expand care for children with life-limiting illnesses Shelton Herald, Bridgeport, CT; by Cris Villalonga-Vivoni; 9/30/25 A Danbury-based nonprofit hospice center is receiving $2 million in state funding to expand its pediatric care services and help more families access specialized end-of-life care. Founded in 1983, Regional Hospice and Home Care of Western Connecticut is the only nonprofit hospice in the state providing hospice care to children under 21 with life-threatening conditions. However, its capacity remains limited amid rising demand. In 2020, there were an estimated 7,800 children in Connecticut with complex medical conditions that limit their life expectancy and could benefit from palliative and hospice care, according to the National Survey of Children’s Health.

Outpatient pediatric palliative care: A national survey of clinic structures and operationsJournal of Pain and Symptom Management; by Ashley Kiefer Autrey, Caroline Stafford, Casie James, Suraj Sarvode Mothi, Elissa G. Miller, Alexis Morvant, Erica C. Kaye; 8/25Despite the rapid growth of pediatric palliative care (PPC) over the past two decades, outpatient pediatric palliative care (OPPC) remains an underdeveloped resource for children living with serious illness and their families. Characterizing the utilization of clinic models and workflow processes among OPPC programs is essential for establishing benchmarks to help improve OPPC operationalization and hospital-specific program development. This paper presents national data to address this gap, with the goal of supporting PPC programs in their efforts to expand service lines to meet the growing needs of patients with serious illness and medical complexity and their families.

Implementing education for community adult hospice nurses to expand pediatric hospice and palliative careJournal of Hospice and Palliative Nursing; by Shelly C Wenzel; 8/25Pediatric hospice and palliative patients require specially-trained clinicians to provide holistic support in areas such as disease progression, illness trajectory, and goals of care. An asynchronous online educational module, including a pre- and postmodule survey, was developed to provide education on timely pediatric quality-of-life conversations and skills for nurses who work with the adult population. Following the education module, participants reported an increase in comfort from 25% to 93.3% and willingness from 59% to 93.3%. Additionally, postmodule confidence level increased to 94%. These findings suggest an asynchronous educational module approach benefits the needs of community-based adult hospice and palliative nurses and gains learned from this module may enhance nurse skill and improve access to care.

30 jolly Santas and Mrs. Clauses are in KC this weekend. Why they may make you cry The Kansas City Star; by Eric Adler; 9/6/25 On Friday morning, inside a convention room at the Hotel Savoy in Kansas City, Santa pulled up a chair to tell a story or two about some of the children, and even adults, he'd visited to bring a last moment of joy. As he spoke, some 21 other Santas, elves and eight Mrs. Clauses from Kansas, Louisiana, Idaho, Wisconsin, some 13 states took to other tables with coffee and muffins for a Santa America symposium about to begin. ... "The difference going in," said Boydston, the nonprofit's current president, "we know what we're going into. We know this is a terminal child. This may be the last time a family gets a smile. This may be the last happy moment." Or maybe it's a visit to a parent who is in hospice, leaving a child behind. ... In those sensitive moments when it doesn't - or for sensitive children - these Santas show up, often at their homes: For a sick child, for a dying child, for grieving children or even worried children whose parent, in the military, may be headed off for deployment. ...

NorthStar Care Community announces partnership with Beads of Courage Fox 17 - West Michigan;by Nicole Stoner; 8/19/25 Beads Of Courage is an organization that helps pediatric patients document their health journey through beads of different sizes, shapes, and colors. ... NorthStar Care Community, already established for their compassion in pallative and hospice care, has announced a partnership with Beads Of Courage. This time, the partnership honors patients entering hospice care through their own treatment stages, milestones, and moments of courage. ... In addition, the Carry A Bead Initiative invites the public to support these patients on their journey during end-of-life care by carrying a NorthStar Bead with them, then returning it with a message of encouragement. The bead is then gifted to someone in hospice care, ensuring that these patients are not alone in their health journey.

New round of grants announced to support grieving youth New York Life; by Newsroom; 8/14/25 The New York Life Foundation, in collaboration with the National Alliance for Children’s Grief (NACG), proudly announces the recipients of the 2025 Grief Reach Community Education Event grants. The grants in this latest cycle are funding local education events that equip professionals — such as teachers, counselors, and social workers — with the skills and knowledge they need to better support bereaved children in their communities. ...