Literature Review

Building a strong foundation for pediatric palliative care in Connecticut Solomon Center for Health Law and Policy at Yale Law School, Targeted News Service; by Wendy Jiang, Elle  Rothermich, Eugene Rusyn; 8/12/25 The Solomon Center for Health Law and Policy at Yale Law School has released a white paper outlining concrete pathways for Connecticut to guarantee pediatric palliative care (PPC) from diagnosis--not only at end of life--while building a workforce equipped to deliver it statewide. The report highlights two foundational barriers: coverage that generally triggers only when a child receives a six-month terminal prognosis, and a shortage of clinicians trained in primary palliative skills, leading to delayed referrals and fragmented support for families facing serious childhood illness. The authors recommend two primary coverage strategies for the state.Editor's Note: Though written for Connecticut, this 42-page white paper from Yale provides excellent information and recommendations to examine for one's own state. Its sub-title is "Establishing a statewide coverage pathway & expanding primary palliative care education for pediatric clinicians."

Unity receives $30,000 grant from Otto Bremer Trust to expand palliative, hospice, and grief support for pediatric patients and their families The Chamber - Manitowoc County, Manitowoc, WI; Press Release; 8/6/25 Unity is proud to announce the award of a $30,000 grant from the Otto Bremer Trust to support and expand specialized pediatric palliative and hospice care services for children and their families in Northeast Wisconsin. This vital funding will also enhance grief support programs tailored to children and teens impacted by a death. “This generous investment from the Otto Bremer Trust enables us to provide compassionate, family-centered care during the most difficult of life circumstances,” says Alisa Gerke, Executive Director of Unity. “No child should face a serious illness alone, and no family should be left without support during grief. Thanks to this grant, Unity can serve more families with the expertise, tenderness, and commitment they deserve.”

Treasure Coast Hospice announces endowment for pediatric patients WQCS News, NPR for the Treasure Coast, Stuart, FL; by Justin Breckenridge; 7/19/25 The Treasure Coast Hospice Foundation has established a new endowment honoring local philanthropist Marlene K. Filer and her long-standing commitment to children’s health programs in Martin County. ... The Marlene K. Filer Celebrities Fore Kids Endowment will support children and families receiving care through the organization’s Little Treasures Pediatric Program. The program provides comprehensive support for children facing life-limiting illnesses. Filer, founder of Celebrities Fore Kids, has raised more than $3 million since 1997 to support children’s services throughout the region. 

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.

Parental authority and the weight of assent: Navigating moral dilemmas in adolescent end of life careJournal of Bioethical Inquiry; A. L. Heifner, M. M. Ortiz, T. L. Major-Kincade, C. O’Connor; 6/25 In the current era of moral pluralism, medical decisions must account for much more than clinical considerations: they must abide by legal standards of decision-making which usually prioritize parental preferences. Conflict abounds between the parent or other legal decision-maker and healthcare team in situations where the parent prefers not to disclose the severity of the adolescent’s illness or the healthcare team believes continuing lifesaving therapies are not in the adolescent’s best interest. These dilemmas challenge how we solicit adolescents’ preferences (assent) and their options for refusal (dissent). We explore the moral distress healthcare workers face navigating conflict amongst various stakeholders involved in the adolescent’s end-of-life care. Strategies to minimize moral distress are also provided.

Palliative care education in pediatric cardiology fellowships: A survey of program directorsPediatric Cardiology; Lesje DeRose, Sarah Godfrey, Shabnam Peyvandi, Nicole M. Cresalia, Jill M. Steiner, Emily Morell; 6/25 Our survey demonstrated a wide range of PC [palliative care] educational practices among categorical pediatric cardiology fellowship programs. While most programs provided some form of PC education to their fellows, the amount and modality varied widely between programs, from very minimal PC exposure to required core PC rotations. Almost half of the participating PDs [program directors] reported dissatisfaction with the current amount of PC education in their fellowship programs. Programs such as VitalTalk (www.vitaltalk.org) and other (both in-person or virtual) modules have been utilized in other training environments with improvement in trainee comfort in PC topics, including CardioTalk for adult cardiology trainees. Didactic-based curricula in PC topics, such as mental health and ethics, have also been shown to help providers gain confidence in PC domains.

Introducing Little Lights Pediatric Hospice Bristol Hospice; Blog; 7/1/25 When a child faces a life-limiting diagnosis, every moment becomes precious—and that’s why Bristol Hospice is shining a new light on pediatric care. On July 1, 2025, we’re proud to launch Little Lights Pediatric Hospice—our first dedicated program designed specifically for young patients and their families, initially available in Hawaii. ... Little Lights Pediatric Hospice is a specialized program under Bristol Hospice dedicated to providing holistic, family-centered care for children with life-limiting conditions. 

[Spain] “The good death”: Experience of parents who have suffered the loss of a child in a pediatric intensive care unit. A phenomenological studyJournal of Pediatric Nursing; by Sara Alcón-Nájera, Rosa Blanca Ortiz-Pizarro, Elena Peña-Meléndez, Alberto Sánchez-Gallego, María Teresa González-GilThe ‘good death’ condenses experiences of parents into a constructive interpretation. It is characterised by the fact that it is participated, accompanied and honoured. It requires exquisite holistic care (emotional/social/relational and spiritual). It promotes a family-centered approach and emotional wellbeing of parents. The family's perception of a ‘good death’ is a powerful facilitator of bereavement. The experience of the death of a child in a Pediatric Intensive Care Unit must ensure a peaceful, dignified, and respectful death, accompanied and participated in by the family to achieve a “Good Death”. Evidence-based palliative and end-of-life care is essential for developing protocols and resources that ensure excellent support for families and their adaptation to the loss.

‘It takes a village’: The need to expand community-based pediatric palliative careHospice News; by Holly Vossel; 6/25/25Similar to adults, many seriously ill children prefer to die in the home versus in facility-based care settings. But several barriers are preventing greater access to goal-concordant, community-based pediatric palliative care delivery. The challenges in some ways mirror issues among adult populations such as insufficient clinical resources, caregiver burden or lagging family support in the home, as well as financial and logistical constraints. However, in the pediatric space, these obstacles are much more complex and nuanced to navigate, according to Allison Grady, pediatric oncology nurse practitioner and chair of the National Association of Pediatric Nurse Practitioners’ (NAPNAP) Pediatric Palliative Care Special Interest Group.

In the passenger seat - The vital role of Certified Child Life Specialists (CCLS) in hospice careIllinois Hospice and Palliative Care Organization podcast; 6/20/25We’re pleased to share the latest episode of In the Passenger Seat, where we explore the vital role of Certified Child Life Specialists (CCLS) in hospice care. In this thoughtful conversation, our guest speakers Rachael Miller and Allison Bush, of Lightways Hospice, share how Child Life professionals help children and families navigate the challenges of serious illness, dying, and grief.[Note: Link downloads this podcast.]

Strategies to prepare hospice providers to interact with adolescents with a parent in hospicePalliative & Supportive Care; William Grayson, Denice Kopchak Sheehan, Pamela S Stephenson, Kristen DeBois, Caitlin Sheehan; 5/25The sample included 18 young adults (18-28 years old) whose parents died in hospice or palliative care while they were adolescents (12-18 years old). Semi-structured interviews were conducted virtually via Microsoft Teams. The participants described a variety of skills that are important for hospice providers to know. They provided specific suggestions for hospice providers who seek to help adolescents navigate this critical time when their parents are dying or have recently died. These results can also be used to inform the development of interventions that assist hospice providers with strategies tailored to an adolescent's specific needs.

‘Because I Knew You’: OHSU pediatric physician’s memoir reveals how treating kids helped him healOregon Public Broadcasting (OPB), Portland, OR; by Geoff Norcross, with Robert Macauley; 6/10/25 About 200 pages into Robert Macauley’s memoir, he takes up the big question of why God — if there is one — allows kids to suffer and die. “The best answer I’ve come up with — with three graduate degrees in theology from places like Oxford and Yale, followed by three decades as a physician-priest—is…” The next two pages are blank. This is what he writes next. “In other words, I don’t know. I don’t know why God lets such terrible things happen, which even someone as tragically flawed as me would make absolutely sure to prevent, given a pinch of omnipotence and a nanosecond to act.” Macauley deals with dying kids for a living. He’s a pediatrician at OHSU, and one of the few in the country certified in hospice and palliative care. He’s also an ordained Episcopal priest. His new memoir is called “Because I Knew You: How Some Remarkable Sick Kids Healed A Doctor’s Soul.” He spoke with OPB’s “All Things Considered” host Geoff Norcross. 

‘The whole family is the patient’: Children’s hospice program in Raleigh receives $2.5 million gift CBS WNCN-17, Raleigh, NC; by Maggie Newland; 5/28/25 Memories of Eliza Craven fill every corner of her family’s home. “She loved art, she loved reading, she loved learning, she loved being outside,” mother Amanda Hayes Craven said. Said father Lee Craven, “She loved her brothers, loved them both fiercely.” In the spring of 2020, that smart, sweet rough-and-tumble 7-year-old got a diagnosis that left her entire family reeling: a brain tumor.  ... The family began receiving services through Transitions LifeCare’s Transitions Kids program in Raleigh.  ...  “The night that she died, it was a weekend night,” Hayes Craven continued. “It was a Friday night. It was after midnight. We expected one nurse and we got an army of people here to support us.” ... While the Craven family wouldn’t wish their pain on anyone, they are grateful that other families facing similar situations can find help through Transitions Kids, which recently received a 2.5 million dollar anonymous gift.