Porter et al1 add valuable insights about the challenge that families and medical teams face when trying to find experienced pediatric hospice care professionals to care for children nearing the end of life. Forty-one southeastern US hospice nurses, with varying levels of comfort in pediatric care, participated in semistructured interviews. Most reported overwhelming discomfort in caring for children with serious illness, citing an immediate need for “any and all” pediatric content and training, access to pediatric palliative care (PPC) experts for immediate questions, and formation of a pediatric hospice nurse community to bolster resilience.1
During a time when families are stressed and looking for guidance, hospice nurses report feeling uncomfortable, unprepared, and sometimes unwilling to care for children, describing the lack of education, training, knowledge, tools, and resources they have that would benefit the patient and family. Facets of pediatric care that nurses report difficulty with include communicating with the ill child, their parents, and siblings; caring for children without pediatric physician support; understanding what is normal for typically developing children and those at the end of life; and witnessing a child die. Nurses urgently need this education because hospices are absorbing more pediatric referrals, there is a difficulty finding hospices willing to accept children, hospice nurses are often geographically isolated from pediatric hospitals, nurses have few opportunities to gain skills and confidence given the rarity of pediatric patients, and fundamental differences exist between caring for children and adults, as “children aren’t little adults.”1
This lack of proficiency is problematic, as 500 000 US children experience life-limiting illnesses each year.2 Annually, 10% of these children die, and many families wish for their child’s end-of-life care to occur in the home. Provision of home-based hospice services improves symptom management and quality of life and reduces parental distress and health care costs.3 Yet only 1 of every 10 dying children receives hospice care, generally from adult-focused teams, as patients younger than 35 years make up less than 1% of the hospice population.4 Many infants and children ultimately die in the hospital, are never referred for services, or are cared for by health care professionals who do not feel skilled in discussing the unique aspects and benefits of pediatric hospice care. Some children live in areas where there are few or no hospices that will accommodate pediatric patients. Although three-quarters of US adult hospices serve pediatric patients, most serve less than 10 children per year, and few have dedicated pediatric programs.2
In the last decade, pediatric hospice care has been improved by the Concurrent Care for Children provision of the Affordable Care Act, which allows children younger than 21 years with Medicaid or Children’s Health Insurance Program insurance to simultaneously receive hospice care and hospital-based care, including chemotherapy, transfusions, clinical trials, and visits to specialists.5 Although not mandated for children covered under private insurance, some insurers have been willing to cover Concurrent Care–style services when requested by physicians and families. Families do not have to give up their beloved oncology, pulmonary, or cardiology team, nor are they forced to decide between comfort-focused care and disease-directed therapy.6 Although Concurrent Care is widely understood among PPC specialists, families are often given erroneous information about pediatric hospice care when clinicians and hospice teams extrapolate adult policies to children. Concurrent Care enhances goal-concordant care and hospice acceptance for families, most of whom hope for their child to live as well as possible for as long as possible.
In the precursor to this study, Kaye et al7 surveyed 551 hospice nurses in Tennessee, Mississippi, and Arkansas. Nearly 90% of nurses reported no training in PPC or hospice care. Half had no pediatric hospice experience. Even those reporting experience had limited opportunities to build pediatric skills; more than 85% reported caring for children several times a year or less. Surprisingly, more than 70% to 80% reported little experience assessing and medicating pediatric pain and other symptoms, including typical end-of-life symptoms, or caring for an actively dying child, the cornerstone of hospice care. Johnson et al5 reported similar findings in a statewide needs assessment in Georgia; only 50% of responding hospices served children, and those that did not cited a lack of trained staff or demand for PPC.
These findings, although alarming, were foreseeable to PPC experts who care for seriously ill children. In PPC, we often go to great lengths to find an accepting hospice for a child and provide around-the-clock telephone support to adult hospice nurses who are graciously, but nervously, caring for children. Children who have technology needs (tracheostomies or noninvasive positive pressure ventilation) may have additional difficulty finding an accepting hospice. In Georgia, where I practice, we have approximately 5 hospice nurses who are predominately dedicated to pediatrics; the rest focus on adult patients and may accept pediatric patients when asked. Not surprisingly, pediatric hospice nurse retention is challenging. Pediatric programs built around 1 skilled nurse can easily collapse.
Surveyed hospice nurses desired more education and believed this should be provided by PPC physicians, nurse practitioners, and pediatric hospice nurses in a variety of formats, including in-person didactics, experiential hands-on learning, online education, and preceptorship or mentoring programs.1 Education should focus on technical skills, communication, and resilience. Additionally, nurses wanted a 24-7 direct line to PPC clinicians or nurse educators when they have questions about medication management, symptom recognition, and family communication.
Currently available PPC education models include the following:
End-of-Life Nursing Education Consortium (ELNEC)
Education in Palliative & End-of-Life Care (EPEC)-Pediatrics
International Children’s Palliative Care Network (ICPCN) e-learning curriculum
Shiley Institute for Palliative Care, Certificate in Clinical PPC
PPC Webinar Series
Project Extension for Community Healthcare Outcomes (ECHO)
Hospice nurses also discussed the barriers and potential solutions that exist at the individual, organization, and state levels.1 Barriers such as a lack of time, organizational commitment, centralized resources, and funding must be overcome through early planning for staffing, grant support, and improved marketing and visibility of educational events. Similarly, Kaye et al7 advocate for coordination of regional PPC nursing didactics facilitated by PPC experts, targeting pediatric-specific symptom management, end-of-life care, communication around goals of care and advance directives, psychosocial support for parents and siblings, and grief and bereavement support. Additionally, community education, formalized relationships with pediatric hospital systems, and collaborative networks of PPC and hospice team members are needed to support hospice teams.5
These articles highlight an alarming lack of comfort and skill by the hospice nurses trusted to care for children and families at the end of life. We should not accept this as the best we can do. Hospices, community hospitals, pediatricians, pediatric referral centers, state PPC coalitions, and national hospice and palliative care organizations will need to come together to develop and promote national nursing curricula, regional communities, state policies, and individual mentoring and preceptorships so that every dying child receives only the highest-quality care.
Published: October 4, 2021. doi:10.1001/jamanetworkopen.2021.27958
Open Access: This is an open access article distributed under the terms of the CC-BY License. © 2021 Brock KE. JAMA Network Open.
Corresponding Author: Katharine E. Brock, MD, MS, Aflac Cancer and Blood Disorders Center, Children’s Healthcare of Atlanta, 2015 Uppergate Dr, HSRB W-352, Atlanta, GA 30322 (firstname.lastname@example.org).
Conflict of Interest Disclosures: None reported.
Brock KE. Urgent Appeal From Hospice Nurses for Pediatric Palliative Care Training and Community. JAMA Netw Open. 2021;4(10):e2127958. doi:10.1001/jamanetworkopen.2021.27958
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