Literature Review

Access to legacy-oriented interventions at end of life for pediatric oncology patients: A decedent cohort reviewPediatric Blood and Cancer; by Sarah Daniels, Nelson D Franqui-Rios, Suraj S Mothi, Elizabeth Gaitskill, Kathryn Cantrell, Erica C Kaye; 8/24Legacy-oriented interventions have the potential to offer pediatric oncology patients and families comfort at end of life and during bereavement. Certified child life specialists often provide these services, and presently little is known about whether disparities exist in the provision of legacy-oriented interventions. [In this study] fifty-two percent of patients received a legacy-oriented intervention. Older adolescents (≥13 years) were less likely ... to receive legacy-oriented interventions than younger ones. Patients with home/hospice deaths were also less likely ... to receive interventions compared to patients who passed away at SJCRH [St. Jude Children's Research Hospital] locations. Hispanic patients ... and those in palliative care ... were more likely to receive interventions.

Project Linus brings comfort to children in need through handmade blankets and quilts Concho Valley, College Station, TX; by Zoria Goodley; 8/21/24 Project Linus, a nonprofit organization dedicated to providing handmade blankets and quilts to children facing serious illness, trauma or other needs, continues its impactful mission across the United States. There are 17 chapters in the state of Texas alone. Patricia Perry, the Brazos Valley Chapter Coordinator, highlights the broad spectrum of needs the organization addresses.

8-year-old boy's dream of skydiving finally comes true after lazy eye led to terminal cancer diagnosis (exclusive) People; by Angela Andaloro; 8/14/24 "In those moments, he's not a cancer kid," mom Amanda tells PEOPLE of Paxton's big adventures. ... Faced with limited time, Paxton's family are helping make his bucket list dreams, like skydiving, come true and tell PEOPLE about what it means to be able to do so. ... [Click on the title's link to see photos and read more.]

First Swiss hospice for terminally and critically ill children closes a gap in care NZZ; by Erich Aschwanden, Reidbach near Bern, Switzerland; 8/12/24 As many as 10,000 children and young people in Switzerland live with life-shortening illnesses. Because the state does not help support efforts to care for them in special facilities, private organizations are stepping in. ... Switzerland's first children's hospice is located in a converted farmhouse in Riedbach, a small hamlet on the outskirts of Bern. As idyllic as these surroundings may be, the fate of the children and their families who are taken in by the Allani Foundation is bitter. These are children and young people with life-shortening illnesses such as cancer, genetic defects or neurological diagnoses.

Avow Kids Receives Transformational Gift From Naples Children & Education FoundationAvow Hospice press release; 7/23/24Avow Foundation has received a generous grant of $115,000 from the Naples Children & Education Foundation (NCEF), the founding organization of the Naples Winter Wine Festival. The grant is specifically intended for Avow Kids, a program for children ages 5 - 17 that provides support and companionship to youth experiencing any type of grief. The grant will support Avow Kids’ various services, such as individual counseling, support groups, workshops, camps, music therapy, movie nights, and more.

‘My sibling died and my parents never talked about her again’ The Telegraph; by Steph Clarkson; 7/20/24 Julia Martin has few memories of her sister Karen, but remembers the last time she saw her. “She was five years old. I was seven. We were playing on the swing in the park. Then she went off to the hospital with Mum and Dad for a scheduled operation. “She never came home.” Losing a sibling is tragic enough, but for Julia the death of her sister following an operation to repair a hole in the heart was just the start of years of trauma. “I remember my father telling me Karen had died,” says Julia, ... “But that was it. There were no hugs, no comforting words. “Mum barely came near me. She tucked herself away. I had no other siblings to talk to. I was alone.” Things got worse as Julia’s parents built a wall of silence around their loss: ‘‘I wasn’t taken to see Karen in the hospital, I was kept away from the funeral, so there was no closure,” she says.

Everyday ethics or deference to expertise: experiences of pediatric palliative care teams with ethics consultancyJournal of Palliative Medicine; Anessa M Foxwell, Connie M Ulrich, Jennifer K Walter, Meaghann S Weaver; 7/24Little is known about the extent to which pediatric palliative care (PPC) clinicians are engaged in ethics consults or how they perceive interactions with ethics consultants. Online survey distributed to members of the American Academy of Pediatrics and American Academy of Hospice and Palliative Care pediatric and ethics section and special interest groups in the United States. Eighty-six responses were obtained (response rate 45%) from PPC teams in 70 different children's hospitals located in 34 states. Almost all (97%) reported a functional ethics consult service such that PPC is not expected to meet the ethics need of the institution. A person involved on the PPC team also performed ethics consults in half (49%) of the settings, predominantly the PPC physician. Most respondents who perceive PPC teams engage in ethics-relevant work as part of their everyday PPC work. Formal ethics training was lacking among PPC members involved in ethics consults with few ethics degrees (15%), certifications (6%), or fellowships (2%). Discord (67%), conflict (49%), limitations to treatment (48%), and distress (41%) were cited as the most frequent reasons for which PPC teams consult ethics. PPC respondents identified role clarity, coordinated engagement, timely presence, and open communication as strong PHCE consultant practices. Conclusions: PPC team members performing ethics consults may benefit from additional ethics education and training.

Hospice heart appeal in memory of teenager BBC News, West Midlands, United Kingdom; by Andy Giddings; 7/16/24 A mother has shared the story of her "totally remarkable" daughter's final days in a hospice as she helps launch a fundraising campaign inspired by the 17-year-old. While Hannah Debney was cared for at Acorns Children's Hospice in Walsall, she made a heart shaped sculpture as a keepsake for her mother, Christine Debney. The hospice is appealing to the public to dedicate a metal heart to the memory of someone they have lost, which will form part of a display. Ms Debney said the hospice was "amazing" and added: "They allowed us as a family to be together during her final days. ... “Hannah said she wanted to tell the doctors to stop," Ms Debney said. "No-one should have to make decisions like that. It was Hannah who said she wanted to go to Acorns Children’s Hospice and to be transferred there.” Christine described her daughter as "the bravest person" she had ever known. Hannah died 15 days after she arrived, but while she was at Acorns she made keepsakes for her family. They included a cast of her hand in the shape of the heart for her mother, and that symbol inspired the Hannah’s Hearts Appeal.

Erin and Travis Jean’s son, Felix, died in infancy from a rare skin disorder. Here’s what they’d like other families to know about losing a child. The Boston Globe; by Kara Baskin; 7/12/24 In March 2022, Erin and Travis Jean’s son, Felix, died at two-and-a-half months old from complications associated with epidermolysis bullosa (EB), a rare genetic skin disorder that causes severe peeling and blisters. He was cared for in the NICU at Mass General Hospital before spending his final days at home. ...

Dwayne Johnson sings Moana song for a 4-year-old girl in home hospice care: 'It's my honor' People; by Tommy McArdle; 4/2/24 Dwayne Johnson said the Make-a-Wish Foundation connected him with the family of a young girl who "watches 'Moana' every day, all day." Dwayne made a special video for a major Moana fan.  On July 1, the actor, 52, shared a video on Instagram in which he said the Make-a-Wish Foundation had reached out to him with an urgent request to send a message to a 4-year-old girl named Lily Guerrero, who Johnson said is currently on home hospice care. "A 'rush' wish means what the implication sounds like, which is time is just not on our side when it comes to this particular wish," Johnson said in the video. "This rush wish is that Lily is on home hospice now and she watches Moana every day, all day, her dad said. Her wish is to have Dwayne Johnson sing 'You're Welcome' to her and have it recorded so she can listen to it over and over and over and over." [Click on the title's link to view the article and its video of Dwayne Johnson telling the public about Lily and singing to her.]

Pediatric Palliative Care is essential to person-centered quality care for children with serious illnessAAHPM Spring Quarterly; by Larry Beresford; 6/27/24It has often been said that children are not little adults and should not be treated as little adults when it comes to their medical care or to the roles played in that care by palliative care and hospice teams. But what should that truism convey to members of AAHPM? How do hospice and palliative medicine (HPM) professionals ensure that children with serious, incurable, or life-threatening illnesses are managed with due consideration of their differences and distinct needs? What do adult palliative care professionals need to know—and contribute to ensuring that these children get the age-appropriate support they need for the duration of their illness?Publisher's Note: Membership may be required to access this article, or perhaps waiting until it is archived.

Understanding adult hospices caring for children in California, 2018-2021Heather A. Davis, PhD1, Meaghann S. Weaver, PhD, MD, MPH2,3,Christy Torkildson, PhD, RN, PHN, FPCN, HEC-C4,5, andLisa C. Lindley, PhD, RN, FPCN, FAAN6AbstractIn areas where there are absences of pediatric hospice care, adult hospices are often asked to provide hospice care for children.Little is known about these adult hospices. The purpose of our study was to describe the characteristics of adult hospices inCalifornia that provided care to children from 2018 to 2021. Using public data from the California Home Health Agencies andHospice Annual Utilization Report, we conducted a longitudinal, retrospective descriptive study to examine the effects ofhospice characteristics on adult hospices which provide care to children. Market, mission, operational, and financial characteristicswere measured via the California utilization data using descriptive statistics. Service area was measured via latitudeand longitude public data. Hospice location maps were generated for year 2018 and year 2021. The 148 hospices in the studyhad distinct organizational profiles, mainly small, with broad service coverage areas, in rural and urban communities withpredominantly nurses visiting children. There was a significant decline (32%) in availability of adult hospices caring for childrenbetween 2018 and 2021, particularly in northern California. Hospice economics, lack of familiarity with Medicaid, and staffcomfortability with caring for children in hospice, were not driving this decline. Our study provides critical insight into thecharacteristics of adult hospices in California providing care for children and has important policy implications.

East Anglia's Childrens Hospice releases heartwarming film: Ten-year-old "wants to show other children that hospice isn't a scarey place." EACH - East Anglia's Children's Hospices, United Kingdom; 6/17/24 "What's particularly special is that it was initiated by Charlotte. She told us she wanted to be part of a film, to show other children that a hospice isn't a scary place." ... A powerful new film has been released to showcase the work of a children’s hospice through the eyes of a spirited ten-year-old receiving care. Charlotte Freegard stars in the three-minute production, speaking about her experiences at The Treehouse, in Ipswich. “What’s particularly special is that it was initiated by Charlotte. “She told us she wanted to be part of a film, to show other children that a hospice isn’t a scary place. Instead, it’s somewhere they can have fun and create special memories.