Literature Review

Location of pediatric deaths in the US JAMA Network - JAMA Pediatrics; by Sarah H. Cross, PhD, MSW, MPH; Khaliah A. Johnson, MD; Maura A. Savage, MSW; Dio Kavalieratos, PhD; 11/11/24Historically, most seriously ill children in the US have died in hospitals despite a presumed preference for home death. Among the general population, home and hospice facility deaths have increased in the past 2 decades, whereas hospital and nursing facility deaths have decreased; however, recent patterns in location of pediatric deaths are unknown.

Job lock and parents of children with cystic fibrosis JAMA Network; by Lenore S. Azaroff, MD, ScD; Steffie Woolhandler, MD, MPH; Danny McCormick, MD, MPH; David U. Himmelstein, MD2; David Bor, MD; Samuel Dickman, MD; Adam Gaffney, MD, MPH; 10/28/24 US health care coverage is typically tied to employment, sometimes causing job lock, which deters people from changing employment because they need to maintain coverage. Few studies have assessed job lock due to children’s need for health care. Children with cystic fibrosis (CF) have substantial care needs, including costly medications, tests, and quarterly visits with interprofessional teams. Mortality from CF is higher in the US than Canada, where medical care is typically free, suggesting that financial protection may affect outcomes. We assessed whether parental job lock and other financial and employment factors are associated with access to care for children with CF.

Roles of pediatric surgeons in palliative pediatric oncologyPediatric Blood and Cancer; by Hau D Le, Sarah Braungart, Jaime Shalkow-Klincovstein, Nelson Piché; 10/24Pediatric surgeons engaged in oncology will inevitably treat patients receiving palliative care, but their role in this context is poorly described. This article identifies some of the challenges and opportunities of surgical involvement in pediatric oncology palliative care, underscoring how the surgeon's expertise can be exploited to significantly benefit children with cancer. Specific examples of skills (procedural, communication, and coordination) that surgeons can provide to the multidisciplinary palliative care teams are described and the importance of collaboration is highlighted.

[Netherlands] The spiritual dimension of parents' experiences caring for a seriously ill child: An interview studyJournal of Pain and Symptom Management; by Marije A Brouwer, Marijanne Engel, Saskia C C M Teunissen, Carlo Leget, Marijke C Kars; 10/24The spiritual dimension plays a central role in the experiences of parents who care for children with life-threatening conditions, but they receive little support in this dimension, and care needs often go unnoticed. If we want to provide high-quality pediatric palliative care including adequate spiritual support for parents, we should focus on the wide range of their spiritual experiences, and provide support that focuses both on loss of meaning as well as on where parents find growth, joy or meaning.

A simple question changed how I saw my daughter’s life Newsweek Life; by Nikki Moberly; 10/20/24 When my daughter was born almost 24 years ago, not only did I begin my journey as a first-time parent, I embarked on an odyssey that nobody could have prepared me for. This little girl with the face and disposition of an angel was born with a devastating condition, diagnosed at two-and-a-half months old with Aicardi Syndrome. ...  The first years of her life were laser-focused on learning more about her rare condition, symptom stabilization, medication adjustments, therapists, and doctor's appointments. Erin was eligible for early intervention services allowing her to go to school at age three. ... For one of those interviews, the social worker came to my home for us to complete Erin's "student profile" card. I was about to learn the power of a well-placed question. She started by simply asking: "What are Erin's strengths?" ... [Click on the title's link to continue this mother's journey through her daughter's life and death.]

New CMS Medicaid, CHIP Guidance could help clarify pediatric palliative care payment Hospice News; by Holly Vossel; 10/15/24 The Centers for Medicare & Medicaid Services (CMS) recently released new guidelines intended to better support state-based pediatric reimbursement systems and help improve equitable health access among youth populations. The new guidance includes best practices for state Medicaid programs and the Children’s Health Insurance Program (CHIP) to implement and comply with early and periodic screening, diagnostic and treatment (EPSDT) coverage requirements. One of the most significant challenges confronting children living with serious illness and their families is the heterogeneity of policies and programs across the country, said Allison Silvers, chief health care transformation officer at the Center to Advance Palliative Care (CAPC). ...

‘It’s more like hope’: New hospice patient’s Halloween wish come true WTOC 11, Pooler, GA; by Jasmine Butler; 10/14/24 Tons of candy, a bunch of costumes and hundreds of people. That is what a neighborhood in Pooler looked like as people gathered for a Layla Alacan, who recently entered Hospice Care. “She is so sweet when she wants to be and she’ll cuddle up and give kisses, she’s the definition of a sour patch kid. She’s super sour and then super sweet after,” said Layla’s mother, Courtney Alacan. She has a big personality, but she’s fighting a big battle. Layla has a rare terminal disorder called 4H Leukodystrophy. ... It’s an experience her parents Courtney and Nick Alacan know all too well. “Our first child Jamie also had the condition. And she unfortunately passed in April of 2023,” said Alacan. So, they’re vowing to make her wildest dreams come true. ... “[We]  asked her what her favorite holiday was and she said Halloween," said Alacan. “Thinking we would have 40 or 50 kids come through and just you know, have a nice little night. Then, it blew up and now we’re here and we couldn’t be more grateful," said Alacan. An entire community, celebrating Halloween a little early but also rooting on the six-year-old with enough spunk, for them all. 

The death issue: Austin’s Children’s hospice professionals advocate for honesty The Austin Chronicle; by Maggie Quinlan; 10/11/24 Sometimes parents wait too long to tell their sick children that they will die. Sometimes, by the point of disclosure, their child can no longer speak. ... She said often the dying child will become an “emotional caretaker” in the hospital room where they’ve just learned that their illness will kill them. “Even though it’s happening to them, they tend to really want to protect their family.” It doesn’t have to be that way. Cosby says a lot of the job is beautiful, even fun. Families make memories, and child life specialists help make it happen. They go to see the ocean. They throw private proms and graduation ceremonies. They finger paint. They crack jokes. They decide to make the most of precious little time. ... “Grief is the price of love, and there’s so much love in there,” says Heather Eppelheimer, another Dell Children’s child life specialist. “We have to be able to love fully in order to also grieve fully.” Child life specialists respect family wishes and also advocate for honest, clear language about death. They say to use that word – death, dying, die – and avoid “passing away” (“To where?” Cosby asks). That kind of straightforward communication isn’t part of our cultural hardwiring, Cosby says, but it makes everything easier. In her life, when people aren’t comfortable talking about death, she asks why. What are they afraid of? ...

Trends in location of death for individuals with pediatric cancerJAMA Pediatrics; Urvish Jain, BSc; Angelin Tresa Mathew, BSc; Bhav Jain, BS; Erin Jay Garbes Feliciano, MD, MBA; Edward Christopher Dee, MD; Leonard H. Wexler, MD; Suzanne L. Wolden, MD; 9/24Children and adolescents with cancer face unique symptomatic, psychosocial, and existential challenges at the end of life (EOL). Premature death, severe pain, and complex symptoms can be distressing for patients and families. In contrast to prior literature regarding trends on adults with cancer, in this study, the pediatric population had lower rates of death at home, potentially because pediatric patients receive more aggressive EOL treatment than adult patients. Our study found differences among racial and ethnic minority groups, who were more likely to die in hospitals, outpatient settings, and ED facilities. As such, developing capacities for palliative care teams that can reach patients across many EOL settings may be valuable for helping patients and families achieve a death congruent with their wishes, particularly because of persistent differences by race over the past 20 years paralleling findings in adult populations.

James City County couple who started pediatric hospice nonprofit glad for its expansion Daily Press; James City, VA; by Alison Johnson; 9/25/24 Every year on July 3, Allen and Joan Hogge take out old photo albums to look at pictures of a little boy who barely reached age 8. The James City County couple remembers happy moments on the birthday of their only son, Marcus, who died of a progressive neurological disease. ... They think about how he loved sneaking up on people, giving them a gentle pinch and running off giggling as a toddler. ... Marc’s short life with his parents and two younger sisters led the Hogges to found a pediatric home health and hospice nonprofit, Edmarc, that has grown steadily over the past 46 years to provide free services to families across Hampton Roads. Recently, the nonprofit opened a new Williamsburg office to reach residents of the city and surrounding counties, including James City, Gloucester, Mathews, Charles City and New Kent.  ... “This expansion means so much to us,” Allen Hogge said. “We understand all too well how lonely and difficult and exhausting it can be to have a child with a serious illness." ... Named for Marc and the late Rev. Edward “Ed” Page, the pastor at the Hogges’ former church in Suffolk, Edmarc in 1978 became the nation’s first hospice and palliative care program designed for children. 

Families value flexibility and compassion in end-of-life care for children with cancerOncology Nurse Advisor; by Megan Garlapow, PhD; 9/18/24 Bereaved families of children who died of cancer expressed a strong desire for high-quality end-of-life care that balanced comfort with continued treatment efforts, particularly chemotherapy, according to results from a study published in Cancer. Families did not perceive a conflict between comfort care and the pursuit of chemotherapy, seeking both as integral parts of their child’s final days. Despite variations in race and location, there was no clear preference for home or hospital deaths, with the median preference score being neutral at 3.0 on a 5-point Likert scale, ... Instead, decisions surrounding the location of death were often driven by the child’s preferences, medical needs, the impact on other family members, and prior experiences with death. ... Family decision-making was centered on maintaining hope, avoiding harm, and doing what was best for their child and themselves, with religious beliefs playing a significant role.

How music therapy helps this young cancer patient in Louisville hold on to 'pure joy' ABC WHAS-11, Louisville, KY; by Brooke Hasch; 9/17/24Music therapists come prepared for any mood, hoping to bring light to a dark situation. Within the Norton Healthcare system, they help patients cope with pain, discomfort, and anxiety often associated with hospitalization. Brett Northrup's the music therapist for Norton Children's Cancer Institute, a role he stepped into 13 years ago. "I didn't know it existed, and then when I discovered this field, I said, 'this is it. This is what I'm going to do the rest of my life,'" he said. Northrup doesn't miss a beat when a patient's in need of a smile or a moment of normalcy. He's been there many times for 4-year-old Trey Lowman, who's gone through more than most people will in a lifetime. ... "When you put [Trey] and Brett together, it's magic," [Trey's mom] said. "He's full of joy and that's one thing that cancer hasn't been able to take from him."

"At least I can push this morphine": PICU nurses' approaches to suffering among dying childrenJournal of Pain and Symptom Management; Elizabeth G Broden, Ijeoma Julie Eche-Ugwu, Danielle D DeCourcey, Joanne Wolfe, Pamela S Hinds, Jennifer Snaman; 8/24Parents of children who die in the pediatric intensive care unit (PICU) carry memories of their child's suffering throughout a lifelong grieving experience. Given their prolonged time at the bedside, PICU nurses are poised to attend to dying children's suffering. While physical suffering may be remedied with direct nursing care, holistically attending to EOL suffering in the PICU requires both bolstering external processes and strengthening PICU nurses' internal resources. Improving psychosocial training and optimizing interprofessional care systems could better support dying children and their families.