Literature Review

Grief and bereavement in pediatric palliative care #502Journal of Palliative Medicine; by Lori Wiener, Meaghann S. Weaver; 6/25Grief is the natural emotional response to loss. In pediatric illnesses, grief may be a response to physical loss (a patient missing her own bedroom while admitted to the hospital), a relational loss (separation from peer friendships due to extended hospitalizations), and loss of meaning (ambitions, dreams, or hopes for the future are compromised by a life-limiting illness). For children and families, grief often begins at the time of diagnosis and fluctuates through the disease trajectory.

Solomon Center white paper outlines options to expand health care for children living with serious illnessYale Law School; 6/25/25 As state lawmakers consider establishing a statewide pediatric palliative care program, a new white paper from researchers at the Solomon Center for Health Law and Policy at Yale Law School recommends ways that access to palliative care can be improved for Connecticut’s estimated 7,000+ children living with serious illnesses.

New! Pediatric e-Journal Issue #79National Alliance for Care at Home press release; 6/23/25The 79th issue of the Alliance's Pediatric e-Journal - Community Bridge of Support - is available now! This issue focuses on ways in which individuals, programs, and communities can work together in support of pediatric hospice and palliative care. The e-Journal is available to all through the Alliance website.

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.

The Family CNA Model: Supporting families and improving care for children with medical complexity Mondaq; by Stephanie Anthony, Alixandra Gould, Blair Cantfil, and Jessica Lyons; 6/16/25 Children with medical complexity represent less than 1% of all children in the U.S., but have significant, specialized, and long-term health care needs, accounting for one-third of pediatrics costs in the U.S. ... The Family CNA model trains and reimburses family members—including parents, guardians, siblings, aunts, uncles, and grandparents—to provide certain types of home care for children with medical complexity that would otherwise be provided by a registered nurse (RN), a licensed practical nurse (LPN), or a non-family CNA. This care includes low acuity in-home nursing tasks, such as medication administration, gastronomy tube (G-tube) care, or catheter care. Family CNAs are licensed or certified health care professionals that work in concert with other providers on a child's care team, including RNs and LPNs who provide supervision and perform high-acuity tasks, to support their child's medical needs and activities of daily living at home. The unique benefits of the Family CNA model include: ... [Click on the title's link.]

Colorado exemplifies how to build opon paid leave progress to meet families’ evolving needs A Better Balance; 6/3/25 Colorado continues to pave the way for strong work-family protections by modeling how these policies can be expanded to meet families' needs. This spring, Colorado expanded the state’s paid family and medical leave program (the FAMLI Act, which our Colorado Office helped write and pass) to include an additional 12 weeks of paid leave for parents with a baby in the neonatal intensive care unit. Governor Polis signed the bill into law on Friday, May 30th, and Colorado workers with a child in the NICU will be able to take additional leave under the expansion beginning on or after January 1, 2026. ... For parents with children in the NICU, additional time off work to remain present can be a lifeline during a stressful time.Editor's note: As we know, the fragile and uncertain health of an infant in a neonatal intensive care unit can, heartbreakingly, lead to death. This—one of the most devastating forms of loss—often leaves parents to grieve in silence, their sorrow compounded by the experience of disenfranchised grief. While family and friends care deeply, they frequently falter in their efforts to provide meaningful support. Though it has been more than two decades since I served on the Pediatric Team at Hospice & Palliative Care of Louisville—only four years in total—my memories remain vivid. The emotions expressed by mothers and fathers, grandparents and siblings still rise easily to the surface, reminding me how enduring and raw such losses can be. Bravo ti Colorado's FAMLI Act. May more states follow their lead.

Timing and outcomes of palliative care integration into care of adolescents and young adults with advanced cancerOncology Practice; Jeremiah Bonnet, BA; Colin Cernik, MS; Hajime Uno, PhD; Lanfang Xu, MS; Cecile A. Laurent, MS; Lauren Fisher, MS; Nancy Cannizzaro, BA; Julie Munneke, BA; Robert M. Cooper, MD; Joshua R. Lakin, MD; Corey M. Schwartz, MD; Mallory Casperson, BA; Andrea Altschuler, PhD; Lawrence H. Kushi, ScD; Chun R. Chao, PhD; Lori Wiener, PhD; Jennifer W. Mack, MD, MPH; 5/25Adolescent and young adult (AYA) patients with cancer frequently receive intensive measures at the end of life; many also express care goals that align with a palliative approach. [In this study] nearly three quarters (73%) [of  AYA patients] were referred to palliative care before death. Thirty-six percent of palliative care referrals took place before the last 90 days of life; 30% were in the last month of life. Palliative care referrals and their timing were associated with care received at the end of life, with earlier referrals associated with fewer intensive measures near death, including chemotherapy in the last 14 days of life ... as well as intensive care unit admissions, emergency room visits, and hospitalizations in the last month of life ... Patients who were referred to palliative care were more likely to have symptoms assessed in the last 90 days of life, including pain, dyspnea, nausea, diarrhea, constipation, depression, and anxiety ... 

Iowa legislature passes "Mason's Law," with assistance from Children's Respite Homes of America, paving way for 1st Pediatric Palliative Care Center License in the nation Cision PRWeb; by Children's Respite Homes of America; 5/16/25 Iowa has made history. With final approval from both chambers of the Iowa Legislature, "Mason's Law" (House File HF 933) has officially passed, making Iowa the first state poised to authorize a specialized Pediatric Palliative Care Center license. This landmark legislation now awaits the Governor's signature—anticipated before the end of June—and is set to transform how children with life-limiting conditions receive care in Iowa and beyond. Named in memory of Mason Sieck, a young child who passed away in 2021, Mason's Law represents the tireless advocacy of Mason's parents, Shanna and Curtis Sieck. 

Living with grief caused by your child’s death Bonner County Daily Bee, Sandpoint, ID; by Kathy Hubbard; 5/14/25 “The challenge for many people is to speak about their feelings after the death of a child,” Tami Feyen, RN, manager of Bonner Community Hospice said. “If you haven’t gone through it, you can’t imagine what it’s like.” We were talking about the “tree” with the heart-shaped “leaves” that “grows” in the Children’s Healing Garden. This memorial, designed by artist Betty Gardner was installed in 2019 with the idea that people who had lost a child would have a comforting place to come to remember their loved one(s).

Increasing timely code status discussions in hospitalized children with medical complexityJournal of Hospital Medicine; James Bowen MD; Laura Brower MD, MSc; Daniel Kadden MD; Jasmine Parker BS; Alexandra Delvalle BSN; Andrew Krueger MD; Kristin Todd MSW; Rachel Peterson MD; 4/25Children with medical complexity (CMC) have an increased risk of hospitalization and clinical deterioration. Documentation of code statuses concordant with family goals is rare, increasing the risk of serious unintended consequences. We aimed to increase the percentage of patients with documentation of timely code status orders (CSOs) from 5% to 80% over 6 months. Multiple plan-do-study-act cycles were performed focusing on interventions aimed at key drivers, including increasing knowledge in performing code status discussions (CSDs) and improving understanding of institutional policies. The average percentage of patients who received a CSO placed in their chart within 72 h of admission to the CCT [complex care team] increased from 5% to 61% over 6 months.

7-year-old Clayton girl battling stage 4 cancer enters hospice care at her home CBS-17 News, Raleigh/Clayton, NC; by Matthew Sockol, Maggie Newland, Greg Funderburg; 4/18/25 A seven-year-old girl battling an aggressive cancer has returned to her home in Clayton, her family said Friday. Noelle Franklin was diagnosed with stage four osteosarcoma less than a year ago and received treatment at UNC Children’s Hospital. In a video post on the Noelle Strong Facebook page, her mother Toni said Noelle is entering hospice care at their home. “The staff of UNC went above and beyond,” Toni Franklin said in a statement. “The care Noelle had was more than we could ask for. “Noelle has touched so many people, not just in our community, but in the hospital too,” she continued in her statement. “Seeing how many people came to celebrate Noelle breaking out overwhelmed me with joy. We paraded three different floors, wouldn’t expect anything less for Noelle. “We are home. We are at peace.”

Aveanna CEO Jeff Shaner: Medicaid uncertainty detrimental to markets Home Health Care News; by Audrie Martin; 4/16/25 Earlier this month, Aveanna Healthcare Holdings (Nasdaq: AVAH) announced plans to acquire Thrive Skilled Pediatric Care for $75 million. ... This expands Aveanna’s private-duty services, home health and hospice care, and medical solutions in 27 states. ... Home Health Care News spoke with Aveanna CEO Jeff Shaner about this acquisition, future M&A plans, the impact of potential Medicaid cuts and the value of home-based care. ... Shaner: Regarding the broader M&A strategy, I would say M&A is not our core strategy; caring for pediatric, adult and geriatric patients remains our core mission. However, enhancing our growth profile through add-on acquisition strategies, primarily in our Medicaid business, private-duty service business like Thrive, and home health and hospice businesses, is our focus in 2025 and 2026. ... However, the uncertainty regarding Medicaid and federal funding prompts us to reconsider any long-term investments and ensure we have strategically contemplated the reasons for such investments. 

Hiding in plain sight: A narrative review of non-parental relatives' perinatal griefJournal of Social Work in End-of-Life and Palliative Care; Rennie Bimman, Nancy Graham; 3/25Perinatal loss frequently leads to disenfranchised grief, and members of family systems less proximate to the loss are at risk for additional disenfranchisement. Grandparents and siblings are especially vulnerable to complications in perinatal grief due to intersecting and disenfranchising factors of identity, including age, role within family, and type of loss. Evidence found attested to the uniquely complex grief experiences these populations face as a result of their confluent disenfranchisement, and their overwhelming lack of support and recognition. New insights uncovered may inform clinicians as they assess needs and provide support to these oft-ignored grievers. Significant research gaps remain in this subtopic, such as firsthand perspectives of nonparental grievers, data on other extended family members, and the effect of additional psychosocial stressors on nonparental perinatal grief.