Literature Review

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.

Interventions for prolonged grief disorder in children and adolescents: A systematic reviewJournal of Child & Adolescent Trauma; Sarah Bondy, Haleigh Scott; 3/25 Prolonged Grief Disorder (PGD) was added as a new diagnosis to the Diagnostic and Statistical Manual of Mental Disorders 5 Text Revision (DSM-5-TR). There is a need to tailor interventions to children and adolescent populations, but there is a lack of consensus on best practices for treating PGD in these populations. Interventions were grouped by modality including group treatments, hybrid treatments (combined group or individual therapy with family therapy), family treatment, and individual treatment. Cognitive Behavior Therapy (CBT), Attachment Theory and Multidimensional Grief Theory were common theoretical bases for interventions and all shared elements of psychoeducation and integrating knowledge about the loss with existing knowledge. Results for each intervention were found to be generally positive in reducing PGD symptoms.

Experiences of family caregivers of children aged 1–23 months who have received pediatric palliative care: A systematic review with qualitative metasynthesis Sigma Global Nursing Excellence - Journal of Nursing Scholarship; by Juan Manuel Vázquez Sánchez, Manuela Rodríguez Sánchez, Emilio Mota Romero, Ana Alejandra Esteban Burgos, Rafael Montoya Juárez, César Hueso Montoro, Daniel Puente Fernández; 4/1/25 This study underscores the importance of addressing the unique needs of family caregivers of children aged 1–23 months receiving pediatric palliative care (PPC), highlighting their struggles with social isolation, neglected self-care, and disrupted family life. Healthcare providers should prioritize age-specific approaches to PPC, focusing on improving communication, care coordination, and understanding of palliative care principles to better support these caregivers. [Continue reading ...] 

[UK] Play 'humanizes' pediatric care and should be key feature of a child-friendly NHS, report suggests Medical Xpress; by University of Cambridge; 3/30/25 The report, by University of Cambridge academics for the charity "Starlight," calls for play, games and playful approaches to be integrated into a "holistic" model of children's health care—one that acknowledges the emotional and psychological dimensions of good health, alongside its physical aspects.  ... Both internationally and in the UK, health systems have, in recent decades, increasingly promoted play in pediatric health care. There is a growing understanding that making health care more child-friendly can reduce stress and positively improve younger patients' experiences. Despite this recognition, play often remains undervalued and inconsistently integrated across health care contexts. For the first time, the report compiles evidence from over 120 studies to make the case for its more systematic incorporation. [Continue reading ...] Editor's note: Click here to access the report, Playing with children's health? 

Honoring a young girl’s love of nature on her final dayMayo Clinic News Network; by Mayo Clinic Staff; 3/27/25 On a Saturday evening in September of 2024, Mae Helgeson arrived at Mayo Clinic in Rochester, her small body reeling from the trauma of a life-threatening accident. Although she was intubated and sedated, it didn't take long for the care team to learn what made this little girl special. ... "I often ask parents to tell me about their child. Is there anything you think is important or that I should know about your family?" says Paige Dighton, one of the Child Life specialists who partnered with Mae's family. "This allows them to share the special things — those unique qualities that make them a family. You learn more than just what's in their chart." ... It was only a couple of days later that Mae's family was faced with the devastating decision they'd hoped to avoid. ... The question shifted from "Can we save her?" to "How do we say goodbye?" Following their lead, the team began focusing on end-of-life care. "Dr. Schiltz gave us the space to think and process our emotions — it didn't feel rushed," says Matt. 

Ohio reported its first measles case in 2025. Here’s what you need to know about this highly contagious virus. Signal Cleveland, Cleveland, OH; by Sue Zake and Reegan Davis Saunders; 3/25/25 An unvaccinated adult in Ashtabula contracted the first case of measles in Ohio, according to the Ohio Department of Health. The individual had contact with someone who recently traveled internationally and was confirmed to have contracted the highly contagious respiratory virus. ... As of March 20, the CDC has reported 378 confirmed cases in the U.S.  — 95% of those who became ill were either unvaccinated or had an unknown vaccination status. Twenty-seven percent of children under 5 years of age who contracted measles have been hospitalized since Jan. 1. Here’s more information to help you understand the disease and protect yourself and your family [and prfoessionals]. [Continue reading ...]