Literature Review

[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.

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. ...

Davina McCall reveals 'end of life checklist' after devastating tumour news from doctor Express; by Emmanuella Ngimbi; 8/18/25 TV presenter Davina McCall opened up about the major action she took after being diagnosed with a brain tumour during a health check-up as part of her menopause advocacy work in November. Despite being told it was benign, the 57-year-old was convinced death was imminent and proceeded to make an end-of-life checklist, which she now says was “the best gift.” ... Davina revealed that in the end, her checklist came down to finding peace in the fact that her loved ones would survive without her.

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. ...

End-of-life course and subspecialty palliative care involvement for children on mechanical circulatory support: Five-center retrospective cohort study from the United States, 2015–2020Pediatric Critical Care Medicine ; by Vazquez Colon, Zasha; Robinson, Lorelei; Lopez-Colon, Dalia; Joong, Anna; Waldman, Elisha; Delgado-Corcoran, Claudia; May, Lindsay J.; Cousino, Melissa K.; Peng, David M.; Lukich, Stevan; Blume, Elizabeth D.; Machado, Desiree S.; M. Moynihan, Katie; 7/25Objectives: To characterize end-of-life (EOL) care and subspecialty palliative care (SPC) involvement in children with heart disease supported on mechanical circulatory support (MCS), including ventricular assist devices (VADs) and extracorporeal membrane oxygenation (ECMO). Most pediatric deaths after MCS occur soon after discontinuation of devices while receiving invasive therapies in ICUs. SPC teams were involved in less than half of the cases, with only 21% being consulted early. SPC was associated with more ACP [advance care planning] and less CPR at EOL.

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.

Community turned-out for 7th annual Hoedown for Hospice in Dickinson The Dickinson Press, Dickinson, ND; by Press Staff; 7/11/25 The spirit of community and compassion was on full display June 19 as families, friends and neighbors gathered at Veterans Memorial Park for the 7th Annual Hoedown for Hospice. This beloved fundraising event benefits the Dickinson hospice program offered through CHI Health at Home.A crowd of all ages turned out, making the event a resounding success. Attendees enjoyed a lunchtime filled with activities and entertainment. Children laughed and played in colorful bouncy houses, met furry new friends at the petting zoo, and everyone enjoyed delicious food and ice cream.

Caring beyond cure-Perspectives of pediatric oncology nurses on end-of-life careJournal of Hospice & Palliative Nursing ; Scarperi, Peter BSN, RN; MacKenzie Greenle, Meredith PhD, RN, ANP-BC, CNE; June, 2025In a sample of nursing students and nurses working in pediatric oncology, this mixed-methods study aimed to describe attitudes toward and experiences of providing end-of-life care and examine the relationship between education, work experience, and attitudes. Overall, participants held positive attitudes toward end-of-life care, with staff nurses more positive than student nurses. All participants had provided end-of-life care, yet only 2 (5.41%) thought their education thus far prepared them. Age, education, experience, and burnout were associated with attitudes toward providing end-of-life care. Qualitative themes included challenges of preparedness and training, the nurse’s role, and parent team barriers. Training in pediatric end-of-life care is crucial to improve nurses’ comfort with providing this care.

Providing support to children during the loss of an important adult in the ICUIntensive Care Medicine; Ruth Kleinpell, Bénédicte Gaillard-Le Roux, Jozef Kesecioglu; 5/25Research on bereavement care in the ICU has demonstrated associated benefits, including facilitating emotional adjustments, meaning-making, and resilience. As Rowland and colleagues highlight, helping children process information effectively without feeling overwhelmed is important, as they need supportive adults to provide honest, developmentally appropriate explanations. The strategies highlighted in their narrative review can help ICU clinicians to tailor bereavement care for children to support them through the loss of an important adult in the ICU.

HOSPICE: Children’s book written by Manheim Township mother finally published 3 years after she died of cancer LNP Lancaster Online, Lancaster, PA; by John Walk; 1/27/25  As she battled a rare sarcoma cancer over the last two years of her life, Manheim Township resident Ginny McCreary struggled to find a children’s book she could read to her two young daughters to help them better understand what she was going through. So McCreary wrote the book herself, sometimes on a smartphone while laying in bed late at night, ... McCreary died Aug. 15, 2021. She was 34. She left behind a self-published manuscript of the children’s book that sat idle for about two years but was not forgotten. ... The book has also made its way inside four Hospice & Community Care locations in Lancaster as well as Penn Medicine’s Ann B. Barshinger Cancer Institute in East Hempfield Township. [Video with Ginny's mother] "I'd love to get it to some cancer centers and hospice centers ..." 

Preferences for communication about prognosis among children with cancer, parents, and oncologistsJAMA Network Open; Caroline Christianson, MD; Calliope Reeves; Harmony Farner, MA; Shoshana Mehler, BA; Tara M. Brinkman, PhD; Justin N. Baker, MD; Pamela Hinds, PhD, RN; Jennifer W. Mack, MD, MPH; Erica C. Kaye, MD, MPH; 4/25Should oncologists elicit communication preferences from patients with pediatric cancer and their parents before disclosing prognosis? In this study, patients, parents, and oncologists recommended preemptive elicitation of communication preferences with the goal of improving alignment of prognostic disclosure with patient and caregiver communication needs, thereby enhancing quality of care. These findings demonstrate that patients and caregivers are open to discussing prognostic communication preferences, and that oncologists also recognize the potential value in this communication approach, even as they rarely engage in it. 

Quality measure considerations for pediatric palliative and end-of-life careAmerican Journal of Hospice and Palliative Medicine; Hannah Hommes, MSN, RN; Diane Forsyth, PhD, RN; April Rowe Neal, PhD, RN; 3/25 There is an emerging need to provide high-quality pediatric palliative care and end-of-life care to children, adolescents, and young adults with life-limiting illnesses. The aim of this literature review was to explore current quality measures utilized in pediatric palliative care and end-of-life care among pediatric patients with life-limiting illnesses within the conceptual framework of Comfort Theory. Emergent themes among quality measures were categorized into 7 domains: (a) Alleviation of distressing symptoms, (b) Structures and processes of care, (c) Health care utilization, (d) Location of death and bereavement care, (e) Patient and family experiences, (f) Psychological and spiritual care, and (g) Cultural, ethical, and legal considerations. These domains support the physical, psychospiritual, sociocultural, and environmental contexts of Comfort Theory. Quality measure research, development, and standardization should focus within the 7 domains identified for the promotion of comfort, equity, and accessible care.

Children’s bereavement needs on rise, Hospice of Santa Barbara finds Noozhawk, Santa Barbara County, CA; by Wavecomm; 4/20/25 It’s not just adults who are impacted by grief and loss in the Santa Barbara community. Children are as well. One in five children will experience the death of someone close to them by age 18, and one in 20 children will experience the death of one or both parents before reaching adulthood, according to Hospice of Santa Barbara (HSB). Although death and grief are inevitable parts of life, these statistics highlight just how many children are impacted. ... HSB is active on local campuses, providing professional weekly support groups from elementary to college age students. On-campus counseling services provide a space for open communication, support and the development of coping skills, helping to mitigate the risk of drug and alcohol abuse among grieving youth. HSB also works with teachers and staff to offer guidance and support when students face a traumatic death. HSB is prepared to respond to calls from 65 schools from Carpinteria to Goleta, in case a traumatic death occurs within the campus.