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10/21/2021PEDIATRIC HOSPICE & PALLIATIVECARE: CASE MANAGEMENT AND THEROLE OF THE SOCIAL WORKER1INTRODUCTIONS Ashley Callahan, LMSW Carousel Pediatric team social worker, Kansas CityHospice & Palliative CareNancy Hammel, RN, BSN Carousel Pediatric Clinical Manager, Kansas CityHospice & Palliative Care21

10/21/2021UNDERSTANDING PEDIATRIC HOSPICE &PALLIATIVE CARE NHPCO Concurrent Care Update, 2016 Pediatric palliative and/or hospice care is both aphilosophy and an organized method for deliveringcompetent, compassionate and consistent care tochildren with chronic, complex and/or lifethreatening conditions and their families.Studies show that a very small number ofchildren die on palliative or hospice services Criteria for children being on hospice services ismore inclusive than it is for adults Palliative vs Hospice services 3CASE MANAGEMENT IN HOSPICE &PALLIATIVE CARE Primary agency team PhysicianNurse case managerSocial workerChaplainSecondary support/systems PCP, specialist teamExpressive therapiesPT/OTDietician42

10/21/2021DIFFERENCES BETWEEN PEDIATRIC ANDADULT HOSPICE THE CHILD “Children are not small adults.”Developmental stages impact how we communicate withand support families. Often lacks the verbal skills to describe needs, feelings, etc Patient vs ParentHow much do we tell them?Children as minors do not have legal right to makedecisions. Hope Children are members of the community in manydifferent ways like sports or church, and always inthe education system.5DIFFERENCES BETWEEN PEDIATRIC ANDADULT HOSPICE THE FAMILY Childhood illness and EOL has an impact on familysystemsStrain in relationships Siblings Issues Resentment/anger Protecting parents How much do we tell them? Children don’t die How much is too much?Care at home vs hospitalAnticipatory grief differs due to out-of-order loss.63

10/21/2021DIFFERENCES BETWEEN PEDIATRIC ANDADULT HOSPICE CARE TEAM Children’s physiological resilience complicatespredictions about their future.Competency of various rare childhood diseasesLack of experience with pediatric EOL Especially in the home settingBoundaries and fatigue working with families in thehome settingSigns of imminent EOL are less discernible7DIFFERENCES BETWEEN PEDIATRIC ANDADULT HOSPICE INSTITUTIONAL Less reimbursement for pediatric care at homeBalancing costs and family desires for child’s careHigh staff competency required for pediatrics High staff intensityLack of qualified institutions and providers for carein the home84

10/21/2021SOCIAL WORK RESPONSIBILITIES UNIQUETO PEDIATRIC PATIENT-FAMILIESProvide developmentally appropriate education Assess for socioeconomic difficulties due to caringfor a child in this kind of crisis Provide emotional/anticipatory grief support forsiblings, parents etc due to out-of-order loss Provide opportunities for meaning making Bucket list, hand moldsIdentify ethical issues that sometimes occurwhen caring for a minor child Assist the interdisciplinary team inaccommodating care for child within itscommunity ie. school 9PATIENT A17 yo Developmental Age Journey through decision making, palliative tohospice Concerns r/t turning to legal adult Dynamics of family system Team involvement 105

10/21/2021PATIENT B7 yo Prognosis, physiological resilience Family system Financial burden Treatment course & hope Team involvement Transition to hospice End of Life experience 11SO HOW DO YOU PREPARE YOURSELF ORYOUR PROGRAM IN ORDER TO BETTER SERVEPEDIATRIC PATIENTS?Reassess your mission statement Identify areas lacking in your services Assess if services are available through anothercommunity agency Conduct a survey of past families – this voice isn’tcaptured any other way! Networking with other professionals that are doingthis work for support and advice 126

10/21/2021BEREAVEMENT SERVICESSolace House Support available to both palliative and hospicepatients Make exception to accommodate unusualbereavement needs due to unique type of loss Refer out to other appropriate grief supportoptions 13QUESTIONS OR COMMENTS?147

10/21/2021WORKS CITED Pediatric Palliative Care. Alexandria, VA: NationalHospice and Palliative Care Organization, December 2012 Pediatric Palliative Care. Alexandria, VA: NationalHospice and Palliative Care Organization, December 2012 diatric Standards.pdfNHPCO Facts and Figures: Pediatric Palliative andHospice Care in America. Alexandria, VA: NationalHospice and Palliative Care Organization, September 2014. ntinuum s/2019/04/Pediatric Facts-Figures.pdfSocial Workers in Hospice and Palliative Care:occupational profile. Washington, DC: National Associationof Social Workers, 2010. icket rq8DPC0g-AM%3D&portalid 0158

10/21/2021 2 UNDERSTANDING PEDIATRIC HOSPICE & PALLIATIVE CARE NHPCO Concurrent Care Update, 2016 Pediatric palliative and/or hospice care is both a philosophy and an organized method for delivering competent, compassionate and consistent care to children with chronic, complex and/or life-

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