Literature Review

If my dying daughter could face her mortality, why couldn’t the rest of us? DNYUZ, appearing first in The New York Times; Ms. Wildman; 11/25/24 The first week of March 2022, I flew to Miami with my 13-year-old daughter, Orli; her 8-year-old sister, Hana; and my partner, Ian. We were, by all appearances, healthy. Robust, even. In reality, we were at the end of a reprieve. Orli’s liver cancer had by then been assaulted by two years of treatments — chemotherapy, a liver transplant, more chemotherapy, seven surgeries. Now new metastases lit up a corner of one lung on scans, asymptomatic but foreboding. We asked her medical team if we might show her a bit of the world before more procedures. Our oncologist balked. Hence, this brief weekend away. When we arrived at the beach Orli ran directly to the water, then came back and stretched out on a lounge chair. She turned to me and asked, “What if this is the best I ever feel again?” Three hundred and seventy-six days later, she was dead. In the time since she left us, I have thought often of Orli’s question. All that spring, Orli asked, pointedly, why did we think a cure was still possible, that cancer would not continue to return? Left unspoken: Was she going to die from her disease? It was a conversation she wanted to have. And yet what we found over the wild course of her illness was that such conversations are often discouraged, in the doctor’s office and outside it. ... [Click on the title's link to continue reading this profound story.]Editor's note: While families are gathered for Thanksgiving, many health changes will be observed since this time last Thanksgiving, with countless unknowns to unfold until Thanksgiving next year. Tune into the wide scope of conversations that people do want to have, don't want to have, and--perhaps--that your own family needs to have, with grace and care for all.

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 special dedication for a Make-A-Wish room KOB-4, Albuquerque, NM; by KOB; 10/18/24 There’s nothing like making a child’s wish come true. For children fighting a critical illness, those wishes are a gift of hope that can help give them the strength to continue their fight. Through tears and hugs, the Make-A-Wish room where wishes are planned and granted was dedicated to the memory of a Wish Kid.  ... “After two days in the hospital, we were able to bring our precious boy home. ...” It’s a situation no family prepares for after bringing their newborn home. ... Seth was placed on hospice and his family focused on letting him live out his best life. That’s when make a wish became part of his story. “They were pure magic from the moment we met them, after sitting down to meet and learn about Seth, we discussed possible wish ideas.” That meeting was done in the Wish Room. ... “Our Wish Room is where Wish Kids come in to do their discovery visits, to talk about their wish to plan. And so it’s a really fun space just for kids to come in, forget about their diagnosis for a while and dream big,” said Sara Lister, president & CEO of Make-A-Wish New Mexico.

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.