Literature Review

All posts tagged with “Clinical News | Pediatric News.”



Parental authority and the weight of assent: Navigating moral dilemmas in adolescent end of life care

07/19/25 at 03:25 AM

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.

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Family first: Embracing milestone achievements in pediatric care

07/17/25 at 03:00 AM

Family first: Embracing milestone achievements in pediatric care Carolina Caring, Newton, NC; Press Release; 7/15/25 ... Cardinal Kids [recently] became the first hospice organization in North Carolina to receive CHAP’s Pediatric Care at Home Certification. This milestone affirms what our patients and families already know: our program delivers care that is not only clinically focused, but also family-oriented, deeply personal, and rooted in hope. For the Cardinal Kids team, seeking the CHAP Pediatric Care at Home Certification wasn’t about achieving something new—it was about sharing the best practices we deliver to every patient, every day. As Cardinal Kids Director Emily Scholler explained, “The benchmarks CHAP presented were already in place at our program. Why not show CHAP how great this pediatric program is?” As part of the CHAP preparation process, our team assessed, developed, and showcased a model of care that’s always been central to who we are. We presented this model to CHAP surveyors as “A Focus on L.I.F.E.”

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Palliative care education in pediatric cardiology fellowships: A survey of program directors

07/12/25 at 03:40 AM

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.

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Pallitus Health Partners receives CHAP Accreditation for Adult Palliative Care and Pediatric Care Certification for Kourageous Kids

07/10/25 at 03:00 AM

Pallitus Health Partners receives CHAP Accreditation for Adult Palliative Care and Pediatric Care Certification for Kourageous Kids Pallitus Health Partners, Louisville, KY; Press Release; 7/8/25 Community Health Accreditation Partner, Inc. (CHAP) has awarded Care Guide Partners, Inc. (dba Pallitus Health Partners) CHAP Accreditation under the CHAP Palliative Care Standards of Excellence. The nonprofit also received certification for its Kourageous Kids (KKids) palliative care program. CHAP Accreditation demonstrates that Pallitus Health Partners meets the industry’s highest nationally recognized standards. The rigorous evaluation by CHAP focuses on structure and function, quality of services and products, human and financial resources, and long-term viability. Simply stated, adherence to CHAP’s standards leads to better quality care. ... Pallitus Health Partners, an affiliate of Hosparus Health, offers comprehensive palliative care for serious illnesses in Kentucky and Indiana. Editor's Note: Congratulations to Pallitus Health Partners and Hosparus Health! This accreditation marks yet another milestone of excellence this organization—originally founded as Hospice of Louisville—which pioneered one of the nation’s first pediatric hospice teams in 1980. I had the privilege of serving on the Pediatric Team of Hospice & Palliative Care of Louisville from 1997 to 2001. Profound experiences with these children, their parents, siblings, grandparents, our dedicated team members, and community partners are forever embedded in me. They continue to shape my perspective and purpose in my role as editor in chief of this newsletter.

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Introducing Little Lights Pediatric Hospice

07/08/25 at 03:00 AM

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. 

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Grief and bereavement in pediatric palliative care #502

07/05/25 at 03:45 AM

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.

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[Spain] “The good death”: Experience of parents who have suffered the loss of a child in a pediatric intensive care unit. A phenomenological study

07/05/25 at 03:05 AM

[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.

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Solomon Center white paper outlines options to expand health care for children living with serious illness

07/01/25 at 03:15 AM

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.

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‘It takes a village’: The need to expand community-based pediatric palliative care

06/27/25 at 03:15 AM

‘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.

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New! Pediatric e-Journal Issue #79

06/24/25 at 03:00 AM

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.

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In the passenger seat - The vital role of Certified Child Life Specialists (CCLS) in hospice care

06/23/25 at 03:00 AM

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.]

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Caring beyond cure-Perspectives of pediatric oncology nurses on end-of-life care

06/21/25 at 03:35 AM

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.

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Strategies to prepare hospice providers to interact with adolescents with a parent in hospice

06/21/25 at 03:30 AM

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.

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The Family CNA Model: Supporting families and improving care for children with medical complexity

06/19/25 at 03:00 AM

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.]

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‘Because I Knew You’: OHSU pediatric physician’s memoir reveals how treating kids helped him heal

06/18/25 at 03:00 AM

‘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. 

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Colorado exemplifies how to build upon paid leave progress to meet families’ evolving needs

06/11/25 at 03:00 AM

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.

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‘The whole family is the patient’: Children’s hospice program in Raleigh receives $2.5 million gift

06/02/25 at 03:00 AM

‘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.

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Timing and outcomes of palliative care integration into care of adolescents and young adults with advanced cancer

05/31/25 at 03:20 AM

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 ... 

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Mom takes first picture with new baby, not knowing in weeks he'll be gone

05/27/25 at 02:15 AM

Mom takes first picture with new baby, not knowing in weeks he'll be gone Newsweek; by Daniella  Gray; 5/24/25 A grieving mom has shared the first picture of herself with her newborn baby, not knowing she'd lose him just weeks later. Wunmi Babalola from the West Midlands in the UK, shared photos on TikTok looking at her baby in his hospital crib. In the same carousel on TikTok, Babalola also included the last photo the two of them would have together, just six and a half weeks later. ...  

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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

05/20/25 at 03:00 AM

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. 

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Transitions LifeCare receives $2.5 million gift to support Transitions Kids Program

05/20/25 at 02:00 AM

Transitions LifeCare receives $2.5 million gift to support Transitions Kids Program Tranisitions LifeCare, Raleigh, NC; Press Release; 5/15/25 Transitions LifeCare is honored to announce a generous $2.5 million gift from a family who wishes to remain anonymous. This heartfelt contribution, pledged over the next five years, comes from a family profoundly impacted by the care they received and is designated to support Transitions Kids—our program providing hospice and palliative care for children. “This gift is incredibly moving,” said Dr. Adam Wolk, CEO of Transitions LifeCare. “It reflects not only the power of compassionate care but also the lasting bond that forms between our team and the families we walk alongside. We’re so grateful for this family’s trust and belief in our mission.”

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Living with grief caused by your child’s death

05/15/25 at 03:00 AM

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).

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Hillsdale woman celebrates 100th birthday [hospice pioneer, 1970's]

05/06/25 at 03:00 AM

Hillsdale woman celebrates 100th birthday [hospice pioneer, 1970's] HudsonValley360, Hudson, NY; by Tiffany Greenwaldt-Simon; 5/2/25 A Hillsdale resident is celebrating a big milestone - turning 100. Dr. Irma Waldo was born on May 1, 2025, and recently celebrated joining the centenarian club with an openhouse celebration at the Copake Community Center Friday afternoon. ... [Dr. Waldo] opened her own pediatric practice in Hillsdale in 1952 - often making house calls and getting to know the families she was caring for. ... For Waldo, the most rewarding part of her medical career was the hospice service she helped create, Roe Jan Hospice. She received a call in the 1970s from a doctor in New York City who had a 9-year-old patient with a brain tumor. ... The hospice was expanded to cover the all of Columbia County over the course of 18 years, eventually becoming Columbia County Hospice, and then being absorbed into Hudson Valley Hospice. "That was the best thing, most important part of my practice, forming that hospice," Waldo said.Editor's note: Click here for more history.

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Increasing timely code status discussions in hospitalized children with medical complexity

05/03/25 at 03:40 AM

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.

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Quality measure considerations for pediatric palliative and end-of-life care

05/03/25 at 03:35 AM

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.

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