Literature Review

19-year-old says home hospice is a gift, not doom and gloom Keloland Media Group, Sioux Fall, SD; by Tom Hanson; 2/27/25 ... Cheyenne may be 19, but she is wise beyond her years, especially when it comes to something doctors discovered when she was 11. “I have stage 4 Metastatic Osteosarcoma, which is bone cancer in my lungs and It hasn’t responded very well to treatment, so that’s so I’m on hospice, but not because, I’m not on hospice because its the end right now, I’m on hospice because just so I have that extra support,” she said. Cheyenne knows people often misunderstand what hospice is all about. “It’s like doom and gloom and it’s like the end, there’s nothing they can do and that’s just not the case, she said. She was able to go on her road trip because Sanford’s Home Hospice team, including Becky Jibben, helped plan the trip and organize support teams along the way if Cheyenne needed help.

Development of an interprofessional clinician training in pediatric serious illness communicationJournal of Palliative Medicine; Danielle D DeCourcey, Rachelle Bernacki, John Carozza, Sithya Lach, Andrea Wershof Schwartz; 2/25Early advance care planning (ACP) is associated with improved outcomes in pediatrics, yet few rigorously developed curricula exist to train interprofessional clinicians in ACP communication. We developed an interactive, skills-based three-hour synchronous online clinician training program using Kern's Six-Step Curriculum Design, incorporating didactic and simulated patient encounters with a trained actor. Following training, 97% of participants were highly satisfied with training quality, and 100% endorsed that they would recommend it to colleagues. Additionally, clinician self-reported comfort discussing fundamental elements of ACP significantly increased following the training.

Improving knowledge, confidence, and skills in perinatal bereavement care through simulation in baccalaureate nursing studentsState Nurses Associations - Kansas State Nurses Association; by Shelby True, MSN, RN; Libby Rosen, PhD, RN, IBCLC; Ashley Seematter MSN, RN; Jeri Harvey & Karly Lauer, MSN, RN; 2/20/25Many baccalaureate nursing programs throughout the United States thread concepts of bereavement and end-of-life care throughout their curriculum. However, a standardized education program for nursing students that increases the knowledge, confidence level, and application of skills a nurse must possess when providing perinatal bereavement care is often absent from the curriculum (Sorce & Chamberlain, 2019).  Perinatal loss can have a profound impact on parents and their loved ones, leading to emotional, psychological, physical, and spiritual trauma that deeply affects the lives of those involved. The nursing care each parent receives at the time of the loss may be remembered for years to come and is crucial to determining the nature of the grieving process (Sorce & Chamberlain, 2019). ... To improve the knowledge, confidence, and skill level of nurses providing perinatal bereavement care, a role-play perinatal bereavement simulation was developed and implemented in two Midwestern universities’ baccalaureate nursing programs in the maternal/newborn courses. Editor's note: Having served our hospice's Pediatrics Team for four years, the grief of parents, grandparents, siblings affected me deeply. I remember vividly a young mom unable to physically leave her baby's body with the hospital's nurse. Gently, we held her baby together. Over the course of about 15 minutes, the mother gradually shifted the weight of holding her baby over to me, before the hardest task of her life--leaving the hospital without her child. (It was Christmas week. I bawled when I got home.) Visiting them at the funeral home and after in their home, I experienced horrible, disenfranchised comments and attitudes from others (especially a local preacher). Leaders: tune into your pediatric hospice and palliative team members. What specialized support and education do they need? And, we never know what personal stories of perinatal bereavement those around us continue to carry. 

Long-term health care use among children surviving multiple organ dysfunctionJAMA Network Open; Robert Ohman, MD, MPH; Jerry J. Zimmerman, MD, PhD; 1/25Mortality outcomes of pediatric critical illness have improved over the last several decades, while concurrently the population of patients with technology dependency and complex chronic morbidities has continued to grow and the incidence of MOD [multiple organ dysfunction] has simultaneously increased. In the setting of declining critical illness mortality, pediatric outcomes research has broadened its scope to assess metrics beyond mortality, describing the trajectory of recovery from critical illness with measures of patient quality of life; physical, cognitive, and functional status; and family psychological and economic well-being. As the authors point out, assessment of the larger financial impact of this higher health care utilization on families themselves would be valuable future knowledge, as high health care utilization, appointments, and recurrent hospitalizations may detract from families’ ability to work, care for their other children, and attend to their own medical needs. Targeted support for families of survivors of MOD may be necessary to minimize these secondary impacts and to optimize outcomes for this vulnerable population of patients.

Flat MaineCare rates force home health company to discharge pediatric patients NBC News Center Maine, Lewiston, ME; by Vivien Leigh; 2/7/25 A home health company is lobbying state health officials to adopt a funding plan to ensure kids with severe health needs don't fall through the cracks. Andwell Health Partners provides nursing, therapy, and services to nearly 900 children across six counties. The majority of those kids are on MaineCare, the state's version of Medicaid. But the company said it has no choice but to discharge patients because of a lack of increase in reimbursement rates. ... Lindsay Hammes, spokesperson with Maine DHHS, released a statement to News Center Maine. "... MaineCare has been working with providers and partners, including Andwell, on a palliative care model that would, among other populations, cover children with medical complexity. We are in the rate-setting stage for this model." 

A broader end-of-life-view: The need for hospice and palliative care extends beyond the elderly, as the patient population at Transitions LifeCare suggestsTriangle Business Journal, Raleigh, NC; by Connie Gentry; 2/7/25 Although the likelihood of developing cancer is highest for anyone over age 65, the American Cancer Society’s annual report on cancer statistics, released last month, noted increasing incidents of many cancer types among younger adults and women. ... But positive outcomes were also reported: The cancer mortality rate in the U.S. declined by 34 percent from 1991 to 2022 and, since 1970, cancer mortality in children 14 years and younger has declined by 70 percent and among adolescents ages 15 to 19 years it has dropped by 63 percent. ... Although the majority of their hospice patients are over the age of 75, Transitions LifeCare is seeing an increase in younger patients. Last year, roughly 9 percent of their hospice patients were under age 65, almost evenly divided between women and men.

Kate Middleton fingerpaints with children from hospice during royal visit[UK] Independent; by Barney Davis; 1/30/25The Princess of Wales laughed as she played with terminal children at a “lifeline” hospice. Kate Middleton joked about her “huge” hands as she left her print on the wall of the Ty Hafan children’s hospice in South Wales on Thursday. The future Queen, who confirmed earlier this month she is in remission from cancer, has become patron of the hospice as she continues her gradual return to public duties.

The Dorion Family Pediatric Center breaks ground in Mandarin Jacksonville Daily Record, Jacksonville, FL; by Dan Macdonald; 1/28/25 The hospice center is designed to expand care and convenience for children and their families. The Foundation of Community Hospice & Palliative Care broke ground Jan. 27 on the Dorion Family Pediatric Center, a pediatric hospice center in Mandarin. ... The space will allow for an expanded range of therapies and support services in a dedicated, pediatric-friendly setting. The facility will provide a centralized location that reduces travel time for the clinical team. Currently, caregivers travel to patients’ homes, the release said. ... The Dorion Family Pediatric Center is named in honor of the Dorion family, who are advocates for compassionate care. The family helped establish the organization. 

Concurrent Care Collaborative a safety net for pediatric patients Noozhawk, Santa Barbara, CA; by Easter Moorman; 1/26/25 Partners for Kids has initiated Santa Barbara County’s first Pediatric Concurrent Care Collaborative designed to offer comprehensive, compassionate, and coordinated care to seriously ill children from birth to 21 years of age. Spearheaded by Kieran Shah, president/CEO of VNA Health, and Rebecca Simonitsch, Quality Initiatives Program manager for Cottage Health, nine local organizations have joined to create a safety net for pediatric patients and their families to help them receive care close to home. The groups are: CenCal Health, Central Coast Home Health & Hospice, Cottage Children’s Medical Center, Dignity Health, Hearts Aligned, Herencia Indígena, Hospice of Santa Barbara, Teddy Bear Cancer Foundation, and VNA Health. 

Abigail E. Keller Foundation's Teddy bear drive brings Valentine's cheer to young patients CBS Austin, TX; by We Are Austin; 1/23/25 Valentine's Day is getting a little sweeter for children spending the holiday in the hospital, thanks to the Abigail E. Keller Foundation's annual teddy bear drive. Now in its sixth year, the initiative aims to spread love and comfort through cuddly companions. Melissa Keller, co-founder and president of the foundation, said the drive [describes,] "Abby passed away in February of 2019, ... Abby was full of life and joy, and she brought so much life and joy to everyone that she met. We decided on that first anniversary, we were going to collect teddy bears and take them to the hospital. And we did." ... Keller says "We support medically fragile children and their families throughout their journey and at end of life, we, support our foundation, supports them in, a couple of ways. We we help them through financial assistance. We do care baskets for families going into hospice. We do birthday boxes for children in hospice."

[Irelan] How digital storytelling can support families of very ill children RTE, Ireland; by Veronica Lambert and Razieh Safarifard; 1/17/25 Imagine a family gathered around a young child's bed at home or in the hospital, facing the heart-wrenching reality that their time together is limited. The moments they share now - the stories told, songs sung, laughter, and tears - are more precious than ever. But how can these memories be preserved, not just for the present but for a lifetime? Memory-making activities provide a way to capture these moments, offering comfort during and after their journey through palliative care. In Ireland, the need for such interventions is growing, as more children live with life-threatening conditions and families often find themselves without adequate support in these difficult times. Our new project addresses this gap with a digital storytelling memory-making programme tailored to the unique cultural and practical needs of Irish families.

A call to action for revisiting goals of care discussions with adolescents and young adults with cancerJAMA Network Open; Erica C. Kaye, MD, MPH; 12/24In “Evolution in Documented Goals of Care at End of Life for Adolescents and Young Adults With Cancer,” Mastropolo et al addresses an important and understudied question regarding whether and how goals of care (GOC) change for adolescents and young adults (AYAs) with cancer as death approaches. Intuitively, the study findings showed that AYAs with cancer had increased documentation of palliative GOC as they approached end of life. More specifically, 1 in 5 AYAs had GOC documentation that transitioned from nonpalliative goals in the early or middle periods to palliative in the final 30 days before death. While perhaps unsurprising, the clinical relevance of this finding is significant: a sizeable minority of AYAs may change their GOC during the final weeks of life, underscoring the importance of revisiting GOC conversations as death approaches to align medical interventions with a patient’s wishes. 

Re-imagining childhood grief: Children as active agents in a transactional processOmega-Journal of Death and Dying; Ceilidh Eaton Russell, Meg Chin, Georg Bollig, Cheryl-Anne Cait, Franco A. Carnevale, Jody Chrastek, Bianca Lavorgna, Catriona Macpherson, Stacy S. Remke, Lies Scaut, Jane Skeen, Regina Szylit, Camara van Breemen, Ronit Shalev; 12/24While undoubtedly, the death of a parent or sibling causes considerable distress for children, the transactional model argues that an individual’s ability to adapt to challenges and problems arises from the transactions - interactions - that occur between them and their environment (Sameroff, 2009). After a loss, it is critical to be aware of the fact that children do grieve, that they impact and are impacted by those around them, reflecting influences on their social environments at any and every age. Their impressions, the feedback they receive, the messages they interpret about what is and is not deemed acceptable by those around them, can have immediate and life-long influences on their thoughts, behaviours, emotional and physical wellbeing. We propose that rather than placing the burden solely on children to seek support, adults have responsibilities to engage in a collaborative process whereby children have opportunities to express their interests and needs.