Literature Review

NeoTalk: Communication skills training for neonatal cliniciansAmerican Journal of Hospice and Palliative Medicine; by Katherine F. Guttmann, MD, Malorie Meshkati, MD, Julia Frydman, MD, Cardinale B. Smith, MD, PhD, Lindsay Dow, MD, and Andrea S. Weintraub, MD; 6/24A multi-disciplinary cohort of NICU providers endorsed increased confidence in key communication skills but not increased skill application 2-months post-course completion. While a single course can successfully teach skills, additional exposure may be necessary to build new communication habits. Our experience developing NeoTalk helped elucidate some of the ways in which conversations about seriously ill infants may be different from conversations about seriously ill adults.

Procedural interventions for terminally ill children – Are we aiding palliation?Journal of Palliative Care; by Hannah Phillips, MD, Sarah Perry, MS, Laura A Shinkunas, MS, Erica M Carlisle, MD; 5/24Many children undergo surgery or an invasive procedure during their terminal hospital admission. The types of procedures, patients, and the intent of the procedures has not been well defined. Understanding these details may help pediatric surgeons better determine the clinical settings in which certain procedures will not enhance palliation or survival. ... 132 children met inclusion criteria. Most children were White and less than one year old. The most common type of diagnosis was cardiac in nature. Children underwent an average of three procedures. 75% were intubated and 77.5% had palliative care involved. Patients who were less than one year old at death were more likely to have been intubated, had longer terminal hospital stays, and had more procedures. Those who were intubated underwent more procedures and had longer hospital stays. Those with longer palliative care involvement had fewer procedures. ... Ongoing study may help refine which procedures may have limited impact on survival in the chronically ill pediatric population.

Providing culturally sensitive palliative care to children with cancer: A conversation with Justin Baker, MDThe ASCO Post; by Rikki Camarillo; 5/16/24In the fall of 2023, Justin Baker, MD, took on the role of Chief of the Division of Quality of Life and Pediatric Palliative Care and Director of the Quality of Life for All Program, Stanford Medicine Children’s Health, Stanford, California. He formerly worked at St. Jude Children’s Research Hospital, Memphis, as Chief of the Quality of Life and Palliative Care Division. The ASCO Post recently spoke with Dr. Baker about his new role in palliative care for the treatment of children with cancer at Stanford Children’s and the importance of culturally sensitive care for patients and their families.

Our Hospice of South Central Indiana receives grant from MDRT Foundation Shelby Chamber; 5/3/24 Thanks to the Greater Horizon Financial Group’s partnership, Our Hospice has received a $2,500 grant for its Pediatric Hospice Care services from the Million Dollar Round Table Foundation (MDRT). The MDRT gives to charitable organizations worldwide, demonstrating the generosity, service, and impact of MDRT members.  This year, the MDRT Foundation will award over $1.8 million in MDRT member-endorsed grants to over 350 charitable organizations worldwide. ...

An exploration of managing emotional labour and maintaining professional integrity in children's hospice nursing International Journal of Palliative Nursing; by Mandy J Brimble, Sally Anstey, Jane Davies, Catherine Dunn; 4/17/24Aim: To investigate how children's hospice nurses manage emotional labour and professional integrity in their long-term relationships with parents. Findings: Three overarching, cross-cutting themes were identified—purposeful positioning; balancing personability and professionalism; coping with and counterbalancing emotional labour. All themes were indicative of and/or built upon emotional intelligence constructs, such as self-awareness, self-regulation, appropriate (managed) empathy, social skills and intrinsic motivation. Innate features of children's hospice work were important for perpetuating intrinsic motivation and satisfaction.

Employing telehealth to ease the hospice transition for kids with cancer mHelathIntelligence, by Anuja Vaidya; 4/23/24 ... In a study published in the Journal of Pain and Symptom Management last month, Children's Healthcare of Atlanta researchers detailed a telehealth-based intervention the hospital has employed to ease the transition to hospice for young cancer patients and their families. ... The intervention includes a series of coordinated telehealth visits during the first month of hospice enrollment for children or young adults, 29 or younger, with cancer. ... Hospice nurses participating in the pilot received a tablet equipped with mobile WiFi cellular service that they would take to the family's home, which enabled the [hospital/pediatric specialty] nurses and families to join the call. ... The most important finding of the study was that coordinated telehealth visits between the hospital, hospice, and the families during the first month of hospice enrollment were feasible and acceptable to all participants.

Defining metrics for assessing end-of-life care quality in children with cancer Physician's Weekly; 4/16/24 In this study, the researchers sought to define the target population for applying newly developed quality measures in end-of-life (EOL) care for children with cancer. Through a series of nominal groups, panelists addressed the question: “Which children, diagnoses, conditions, or prognoses should be included when examining the quality of EOL care for children with cancer?” ... A team of pediatric oncology and palliative care clinician-scientists developed a coding structure to analyze responses and identify associated themes and subthemes. 

HopeHealth’s expanding scope of pediatric hospice, palliative services Hospice News, by Holly Vossel; 4/8/24 HopeHealth has been growing its pediatric hospice and supportive care service lines in recent years to address a range of unmet needs among seriously ill children and their families. The nonprofit health system serves Rhode Island and southeastern Massachusetts. ... Hospice News recently sat down with pediatrician Dr. Rebecca MacDonell-Yilmaz, medical director of HopeHealth’s pediatric supportive services. 

The HAP Foundation, CLHPN partner to address unmet pediatric hospice needs Hospice News, by Holly Vossel; 4/5/24The HAP Foundation is partnering with the Child Life Hospice and Palliative Network (CLHPN) to improve awareness of and access to child life services among seriously ill youths and their families. The HAP Foundation helps support research and education in hospice and palliative care. Through the partnership, the organization will help fuel CLHPN’s efforts to expand understanding and utilization of child life specialist services and their benefits for families facing terminal and chronic illness. Child life specialists can help address a range of unmet psychosocial, emotional and spiritual family needs, according to Alyssa Friedberg, CLHPN co-founder.

Bereaved Parent Support Study: Seeking Participants Sylvester Comprehensive Cancer Center/University of Miami Miller School of Medicine, Memorial Sloan Kettering Cancer Cancer, St. Jude Children's Hospital, and Children's Hospital of Philadelphia; 4/2/24This program is offered as a research study examining three types of support for bereaved parents who have lost a child to cancer. The study is jointly sponsored by Sylvester Comprehensive Cancer Center/University of Miami Miller School of Medicine, Memorial Sloan Kettering Cancer Cancer, St. Jude Children's Hospital, and Children's Hospital of Philadelphia; however, families need not have received care from one of these institutions. ...The counseling will be provided through videoconferencing and all activities for this study can be completed in [the participant's] home. ... There will be no charge for any support offered through the study. [Click on the title's link for more information.] 

Pediatric Division - National Coalition for Hospice and Palliative Care National Coalition for Hospice and Palliative Care; 3/28/24The National Coalition for Hospice and Palliative Care’s Pediatric Division represents a multi-disciplinary, volunteer team of pediatric palliative care (PPC) leaders. The Division membership is comprised of representatives from all 14 members of the Coalition, three family advocates, as well as representatives from aligned stakeholder organizations including the American Academy of Pediatrics, American Psychological Association, Association for Child Life Professionals, and the State Coalition Network. 

[Pediatrics] North Dakota Health and Human Services announces new pilot program CBS KX News, by Nathaniel House; 3/26/24 North Dakota Health and Human Services (HHS) has announced that family members who provide extraordinary care to either a child or adult enrolled in an eligible North Dakota (ND) Medicaid 1915(c) waiver may receive payments from the state through the new Family Paid Caregiver pilot program. State funding for the pilot program was approved from the passage of Senate Bill 2276 during the 2023 legislative session. Eligible ND Medicaid 1915(c) waivers include the Autism Spectrum Disorder Birth Through 17 Waiver, Children with Medically Fragile Needs Home and Community-Based Services Waiver, Children’s Hospice Home and Community-Based Services Waiver and the Traditional Individual with Intellectual Disabilities and Developmental Disabilities Home and Community-Based Services Waiver. 

Meaning-making among parents of children with severe neurologic impairment in the PICU Pediatrics / PubMed; by Jori F Bogetz, Ellie Oslin, Maeve O'Donnell, Krysta S Barton, Joyce P Yi-Frazier, R Scott Watson, Abby R Rosenberg; 3/26/24 Online ahead of print Results: Parents discussed ongoing meaning-making that occurred through domains of comprehension and purpose, and themes of understanding of other people and the world around them. Subthemes focused on appreciation/acceptance, adaptability/accountability, valuing all lives, and learning/teaching about their child.