Literature Review

Bereaved mum shares 'what not to say' in new book BBC News; by Roger Johnson and Jonny Humphries; 9/24/24 A bereaved mother has written a book exploring the sensitive topic of how to speak to a parent struck by the loss of a child. Singer and entertainer Kiki Deville, from Earby, said she felt as if she would "never experience joy again" after losing her four-week-old son Dexter in 2007. Dexter died from the rare genetic condition Zellweger Syndrome and spent his last days in Chorley children's hospice Derian House, of which Ms. Deville is now a patron.  Her work there, including countless conversations with other parents, informed her book 'What Not To Say: A Practical Guide to Supporting Bereaved Parents'. Ms. Deville said 17 years after the loss of Dexter, she still remembers the first time someone made the well-meaning but painful comment: "At least he was just a baby." "Now that infers were he older, his death would have mattered more," she told the BBC.  From speaking to other mothers, Ms. Deville also gave examples such as "at least you have other children" and "they're in a better place" as things not to say. She said: "It's really important to recognise that nobody says anything out of malice, I don't think anybody sets out to hurt."Editor's note, calling all non-clinical hospice and palliative care leaders: Your interactions with bereaved parents speak volumes. Do you convey cheap platitudes or wise empathy? Incorporate these human vulnerabilities into your leadership skills. Open yourself to the pain of experiencing the pain and joys of your organization's palliative/hospice pediatric families. Invest a day of shadowing with a pediatric interdisciplinary team member. Be willing to go there. Be willing to be there: physically, mentally,  emotionally, and spiritually (without imposing your own onto others).

Racial disparities in palliative care at end-of-life in children with advanced heart disease in the SouthJournal of Pediatrics; by Harrison Turner, Elizabeth S Davis, Isaac Martinez, Shambihavi Anshumani, Santiago Boresino, Susan Buckingham, Caroline Caudill, Chen Dai, Erika Mendoza, Katie M Moynihan, Lucas A Puttock, Raba Tefera, Smita Bhatia, Emily E Johnston; 8/24We performed a retrospective study from electronic health records of children (≤21 years at death) who died with advanced heart disease at a single institution between 2012 and 2019 (n=128). The main outcome was specialty pediatric palliative care (SPPC) consult; we assessed clinical and sociodemographic factors associated with SPPC. The median age at death was 6 months (IQR=1-25 months) with 80 (63%) ≤1 year... Twenty-nine children (22%) received SPPC. Children ≤1 year at time of death and Black children were less likely to receive SPPC. SPPC was associated with death while receiving comfort-focused care, do not resuscitate orders, and hospice enrollment (no children without SPPC care were enrolled in hospice) but not medically intense EOL care (ICU admission, mechanical ventilation, hemodialysis, or CPR) or death outside the ICU. Children dying with advanced heart disease in Alabama did not have routine SPPC involvement; infants and Black children had lower odds of SPPC. SPPC was associated with more comfort-focused care.

Palliative care for dialysis-dependent pediatric patients: A survey of providers, nurses, and caregiversKidney360; Joshua Lipsitz, Mark Stockton Beveridge, Katherine Maddox; 8/24Dialysis-dependent pediatric patients and their families face significant biopsychosocial burdens and low health-related quality of life. Palliative care consultations can alleviate some degree of suffering for patients and families but remain underutilized within pediatric nephrology. 90% of providers and all nurses desired more palliative care education. Of the 22% of caregivers whose child had already received palliative care services, all found the consultation to be helpful. These data support further palliative care education for pediatric nephrology providers and nurses and more robust and systematic involvement of subspecialty palliative care for dialysis-dependent pediatric patients.

Feasibility of a serious illness communication program for pediatric advance care planningJAMA Open Newtwork; Danielle D. DeCourcey, MD, MPH; Rachelle E. Bernacki, MD, MS; Brett Nava-Coulter, MPH; Sithya Lach, BS; Niya Xiong, MSPH; Joanne Wolfe, MD, MPH; 7/24Children and adolescents and young adults (AYAs) with serious illness often have a variable clinical course with periods of stability alternating with life-threatening deteriorations; consequently, many children and AYAs experience health crises without opportunities to discuss preferences for medical care. Furthermore, bereaved parents report a lack of preparation to address their child’s medical and emotional needs at end of life (EOL). Advance care planning (ACP) is an iterative process to honor patient and family goals and values involving communication about prognosis and the formulation of care plans addressing symptom management, quality of life, preferences for life-sustaining interventions, and anticipatory guidance about EOL. Pediatric advance care planning (ACP), which aims to ensure care is aligned with family goals and values, is associated with better end-of-life outcomes; however, ACP in pediatrics remains uncommon. This pilot cohort study found that the PediSICP [Pediatric Serious Illness Communication Program] was feasible, acceptable, and highly valued by clinicians and parents of children with serious illness.

Austin architects unveil plans for rare pediatric respite and hospice facility CultureMap Austin, TX; by Brianna Caleri; 8/26/24 Few people want to think about the end of a child's life, but pediatric care is a need nonetheless — and it's an underserved one. According to Children's Respite Homes in America, as of 2023, there were only six of such homes in the United States, which makes the plans unveiled at the August 24 Abbey Lights Up COTA Gala incredibly unique. ... The first of its kind in Central Texas, Abbey House will serve as a pediatric respite and hospice facility, meaning that it will provide full-time care to children at various stages of their illness, giving family members a chance to catch up on life outside of medical settings. ... “What we have found is that the design has to find balance between two potentially conflicting concepts – respite and hospice,” said Dr. Patrick M. Jones of Dell Children's Medical Center in a press release. He's the section chief of pediatric palliative care.

Is it early enough? The authentic meaning of the pediatric palliative approach between early and late referral in pediatric oncology: a case studyFrontiers in Oncology; by Anna Santini, Irene Avagnina, Maria C Affinita, Anna Zanin, Franca Benini; 7/24The literature widely supports the benefits of early integration of palliative care into pediatric oncological care; however, many barriers to its successful integration remain. Integrating palliative care as early as possible in the oncology pathway is critical, but other criteria are relevant to positive results. This paper aims to contribute to the early/late referral dualism in pediatric palliative care (PPC) and highlight the importance of a collaborative approach between oncologists and palliative care teams. This study investigates the impact of early versus late referral to PPC, intersecting it with the synergy work between services and the related outcomes.

Bereaved parent preferences on quality end-of-life care for children with cancer in the South Cancer - American Cancer Society; by Isaac Martinez BA, Erin Currie PhD, RN, Elizabeth S. Davis MS, Rohail Kumar MD, Valerie Lawhon MS, ALC, NCC, Jennifer M. Snaman MD, Raba B. Tefera BA, Smita Bhatia MD, MPH, Abby R. Rosenberg MD, MS, MA, Emily E. Johnston MD, MS; 8/18/24 The authors sought to understand bereaved family preferences for end-of-life (EOL) care, particularly among Black families and those in the South. ... Family decision-making involved maintaining hope, not causing harm, doing what was best for their child and themselves, and religious beliefs. There was no clear preference for home versus hospital death (3.0 [1.8–4.0]). Instead, parents considered their child’s desires and/or medical needs, siblings, and prior experiences with death. To have a comfortable death, parents highlighted the need for comprehensive education about their child’s EOL, a caring and comfortable environment, and 24/7 access to their care team. Families expressed a dual preference for comfort care ... and chemotherapy ... at EOL.

The tangled web of pediatric palliative care payment and policy Hospice News; by Holly Vossel; 8/13/24 A complex web of state regulations and reimbursement systems can challenge pediatric palliative care access for seriously ill children and their families. The nation’s fragmented health care system lacks clear guidance when it comes to navigating chronic, complex conditions in children, adolescents and young adults, according to Jonathan Cottor, CEO and founder of the National Center for Pediatric Palliative Care Homes. Much of the current state palliative regulations and reimbursement pathways focus on adult patient populations, representing a significant barrier to improved quality and support in the pediatric realm, Cottor said.

Kids’ hospice offers hope-of-life care in Las Vegas Valley homesReview Journal; by Jeff Burbank; 8/5/24Known for palliative care for kids and young adults ending at age 21, the program (1Care) is called a “hospice” in the newer sense of the word, said Courtney Kaplan, director of community affairs for 1Care. The program is 100 percent covered by government-funded Medicaid. “Hospice is provided for a person with a terminal illness whose doctor believes he or she has six months or less to live if the illness runs its natural course,” the institute states. But in 1Care’s juvenile hospice, palliative care is provided for children with severe conditions but who don’t necessarily have terminal illnesses and can receive treatment while living with their parents and siblings, Kaplan said.

The home-based experiences of palliative and hospice care for children and caregivers (EXPERIENCE) Measure: evaluation of psychometric propertiesJournal of Pain and Symptom Management; by Jackelyn Y Boyden, Mary Ersek, Kimberley A Widger, Judy A Shea, Chris Feudtner; 6/24Home-based pediatric palliative and hospice care (PPHC) supports the hundreds of thousands of children with serious illness and complex care needs and their families in the home setting. The EXPERIENCE Measure is a tool with evidence for reliable and valid scores to evaluate family-reported home-based PPHC experiences at the time care is being received.

Assessing pediatric resident needs in grief and bereavement educationJournal of Pain and Symptom Management; Hannah Reuman, Scott H Maurer, Kelly Harris, Amanda W Brown; July 2024Pediatric [medical] residents care for dying children during training. Few educational efforts focus on helping trainees better understand their own grief process and the supports available to them and their patients' families. This work aims to assess pediatric residents' needs and preferences for content included in a curriculum on grief and bereavement. Conclusion: Pediatric residents indicate a strong desire for structured curricula on grief and bereavement focusing on resources that exist for families, approaches to grieving as a healthcare professional, and better understanding the experiences of bereaved families. These data may inform educators on priorities in training and support of pediatric residents on grief and bereavement.

Utility of do-not-resuscitate orders for critically ill infants in the NICU Pediatric Research - the American Pediatric Society, the European Society for Paediatric Research, and the Society for Pediatric Research; by Shannon Y. Adams, Katherine Redford, Randall Li, Ana Malfa, Richard Tucker and Beatrice E. Lechner; 7/5/24 To better understand the value of DNR orders for critically ill infants in the NICU, a prospective mixed-methods approach was utilized including chart review of infants who died in a regional NICU over a twenty-six-month period and surveys of their neonatologists, neonatal fellows, and nurses. Impact:

Children experiencing grief can build coping skills with library storytime The Mountaineer, Waynesville, NC; by Jennifer Stuart; 7/13/24 Seasons of Grief Storytime will be held at 3 p.m. Sunday, July 21, at the Canton Branch of the Haywood County Public Library. This is a story time that aims to reach out to children experiencing grief, being held in partnership with Haywood Hospice and Palliative Care. The group will read a story and create a personalized keepsake. It is a program ideal for ages 5-10. The program is free, but registration is required.Editor's Note: This simple, meaningful support for children can be replicated easily with other local libraries, schools, community/faith groups.