Pediatric Updates 2020: What We Need To Know In Palliative .

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HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Pediatric Updates 2020:What We Need to Know inPalliative NursingCarrie Cormack, DNP, CPNP, CHPPNPediatric Palliative Care Nurse PractitionerMedical University of South [email protected]

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Pediatric Updates 2020: What We Need to Know in Palliative NursingCarrie Cormack, DNP, CPNP, CHPPNPediatric Palliative Care Nurse PractitionerMedical University of South [email protected]#2020CPF1DisclosureI have no relevant financial interest, arrangements, or affiliation with anyorganizations related to the content of this session.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF21

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Desired Learning OutcomeLearner’s will self-report an increase in knowledge related to recentdevelopments in pediatric palliative care diagnosis, treatment, symptommanagement, and survivorship in serious illness care.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF3Session Pearls The Difference in a Definition Support and Resources in Pediatric Palliative Care (PPC) The Value of PPC Adult vs Peds how are they alike how are they different Advocating for transitioning from Peds to Adults Strategies to Assist Ways to learn moreHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF42

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 20205Definition of Palliative CarePalliative care is an approach that improves the quality of life ofpatients and their families facing the problem associated withlife-threatening illness, through the prevention and relief ofsuffering by means of early identification and impeccableassessment and treatment of pain and other problems, physical,psychosocial and spiritual (WHO, 2020).HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF63

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Definition of Pediatric Palliative Care (PPC)Palliative care for children aims to improve quality of life forthe patient and the family. This is done through expertmanagement of pain and other physical symptoms such asshortness of breath, nausea, vomiting, and anxiety. It is also donethrough emotional, spiritual and other support services to helpthe patient and family cope with the roller coaster of emotionsthat result from dealing with a serious illness or condition (AAP,ND).HOSPICE AND PALLIATIVE NURSE’S ASSOCIATION#2020CPFVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 20207History of Pediatric Palliative CareSisk BA, Feudtner C, Bluebond-Langner M, et al. (2020)HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF84

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020National Organizations with PPC resources AACN End of Life Nursing EducationConsortium American Academy of Hospice and PalliativeMedicine (AAHPM) American Academy of Pediatrics (AAP) Center to Advance Palliative Care (CAPC) National Hospice and Palliative CareOrganization (NHPCO)HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020 Hospice & Palliative NursesAssociation (HPNA) Social Work Hospice and Palliativecare network (SWHPN) Associate of Ped Oncology SocialWorkers (APOSW) Child Life Council (CLC) Association of ProfessionalChaplains (APC)#2020CPF9HPNA Pediatric Palliative Nursing ResourcesHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF105

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020HPNA Pediatric Palliative Program ResourcesHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF11Value OF PPC – It. Is. Essential. Children with serious illness and complex health care needs are livinglonger. Numbers of children with special health care needs that could potentiallybenefit from PPC continue to increase. Estimates on the prevalence of US children currently living with life threateningor chronic, complex conditions such as congenital and chromosomalabnormalities, diseases of the nervous system or cancer, range from 400,000and up, and more than 40,000 infants and children die annually. As many as 17 million adults are serving as caregivers to a seriously illchild.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF126

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Value OF PPC - Children‘s Hospitals PPC National Survey 2013Key Survey Findings: Rate of new PPC program creation peaked in2008, with 12 new programs created that year,and 10 new programs in 2011 Most programs offer only inpatient services, andmost only during the workweek Number of consults annually varied substantiallyacross programs, positively associated withhospital bed size and number of funded staff PPC programs are often highly dependent onhospital funding.Feudtner C, Womer J, Augustin R, et al. Pediatric palliative care programs in children's hospitals: across-sectional national survey. Pediatrics. 2013;132(6):1063-1070. doi:10.1542/peds.2013-1286HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF13Spotlight on Pediatric Palliative Care: National Landscape of Hospital-Based Programs, rams-2015-2016/HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF147

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Value OF PPC- Monitoring impactNational Palliative Care Registry Developed by CAPC and NPCRC in response to this field need, andextensive revisions have been made to ensure that the Registry isresponsive to the unique elements of PPC. Participation in the Registryis free to all palliative care programs. National PC RegistryHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, sed-programs-20152016/168

HPNA Clinical Practice Forum 2020 - Sept. 10-12, ms-20152016/17Adult vs Peds – Similarities and DifferencesHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF189

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Adult vs Peds – Similarities and Differences Patient/ Overall Caseload Team Members Developmental Stages Decision Making Communication Bereavement Etiology/ disease trajectories Medication options Treatment options Documentation ResourcesHOSPICE AND PALLIATIVE NURSE’S ASSOCIATION#2020CPFVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 202019Adult vs Peds – Patients / overall caseloadADULT HUGE numbers of patients Referred late in disease trajectory, often activelydyingPEDIATRICS Smaller numbers and more geographicallydispersed Not actively dying More cancer focused Usually taking multi-medications Rare conditions with variable diseasetrajectories; genetics often involved More GI concerns Frequent crises; increased need for SW Lack of interdisciplinary resources Less cancer focused, more neurological Often alone Often have a family member that will helpprovide history High level of confusion/dementia History taking may be difficultHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020 Family dynamics often cause more complexity#2020CPF2010

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Adult vs Peds – Team members It takes a village Varies by organization May include physicians, nurse practitioners, nurses, social workers, childlife specialists, bereavement coordinators, pharmacists, art and musictherapists, chaplains, psychologists, rehabilitation therapists, dietitiansand more. Each team member has special training and a common focus ofaddressing symptom management, communication, and family support.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, sed-programs-20152016/2211

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020THE VILLAGEHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF23Adult vs Peds – Developmental Stages Children progress though developmental stages as they grow. Physical changes, communication styles, and maturity levels affect their ability to understand illness and becomemore autonomous in their self care. Achieving developmental milestones is variable with each child, palliative care providers must become adept atassessing the unique developmental stage and needs of each child and at responding appropriately.Example: Children who have grownup with chronic illness, interactingwith clinicians and hospitals, tend tohave a more mature understandingof illness, death and dying thanchildren of their age who have beenhealthy most of their lives.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF2412

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Adult vs Peds – Decision Making In Pediatrics – Parents are care-givers and decision makers Family-oriented Parents legally represent children in all decision making Sometimes parents and children have different views Ethics consult may be appropriate In Adults – Adult patients have autonomy and decision making if they havecapacity Patient-specific Requires autonomous, independent skills of patientHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF25Adult vs Peds – Communication Requires sensitivity and awareness to child’s developmental stage Language, culture, educational level of patient and family Degree of trust in health care system When possible - elicits child’s report of her/his symptoms(ex. validated pediatric pain scales) Honor child’s values and input about goals of care Potential for conflict between patient/ family/ care teamHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF2613

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Adult vs Peds – Bereavement Grief associated with the child’s death has devastating, long-termimplications for the entire family and community. Bereavement support for parents, siblings, and family members shouldstart before the death of the child and continue for a periodafterward. Siblings have unique needs during an illness and after a child’s death. Professional support can assist with grief, particularly among thosewith more severe, debilitating symptoms.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF27Video resourcesHunter’s Race Hunter's RaceChoosing Thomas Choosing ThomasCare at the time of Death She needs her Daddy for this partHOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF2814

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Transition - Who, What, Where, When, How . Young adults with pediatric life-threateningconditions who live beyond childhood. Multiple challenges with transitioning frompediatric palliative services to adult healthservices. Knowledgeable providers, coordinated andaccessible services, being respected andvalued, and services and supports thatpromote independence.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF29Strategies to Assist the Seriously Ill Child What does the child understand about the illness? Can you determine the child’s conception of illness anddeath? What does the child want to know? Draw pictures. Ask the child to repeat back to you. Repeat yourself .one conversation may not be enough. Be open to child’s magical thinking. Be honest.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF3015

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020Value OF PPC - Leadership and trainingEnd of Life Nursing Education Consortium,Pediatric Palliative Care –ELNEC PPCELNEC- Pediatric Palliative Care was designed and developed by 20 pediatricpalliative care experts and piloted in 2003. Each year, at least three national train-thetrainer pediatric palliative care courses are offered across the US. The curriculum alsoincludes perinatal and neonatal content.Education in Palliative and End-of-Life CareProgram EPEC - PediatricsEPEC offers a pediatric-specific conference curriculum designed to provide in persontraining on effective teaching strategies as well as access to comprehensive educationalmaterials.Program in Palliative Care Education andPractice PCEP –Pediatric TrackAn in-person, intensive conference focusing on advanced topics in PPC offered throughHarvard Medical School‘s Center for Palliative Care.Medical University of South Carolina PostMSN to DNP in Palliative CareThe Medical University of South Carolina is now offering a Post-MSN to DNP program inPalliative care developed specifically for the working APRN interested in gaining deeperexperience and focus on the needs of individuals with serious illness and their families.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF31References American Academy of Pediatrics [AAP]. (ND). What is Palliative Care? Retrieved PalliativeCare.html Center to Advanced Palliative Care (2019). Pediatric Palliative Care Field Guide. Retrieved August 10, 2020 fromhttps://www.capc.org/documents/257/. Davies B, et al (2008). Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics, 121(2), 282288. Feudtner, et al. (2011). Pediatric Palliative Care Patients: A Prospective Multicenter Cohort Study. Pediatrics, 127(6), 1094-1101. Gans D, et al (2012). Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with lifethreatening conditions. Policy Brief UCLA Cent Health Policy Res,(PB2012-3):1-8. Hills, M. (2015). Difference and similarities between paediatric and adult palliative care: how can we learn from each other to worktowards common goals? Retrieved from nternet Liberman, D.B. (2016). Early introduction of palliative care and advanced care planning for children with complex chronic medicalconditions: a pilot study. Childcare, health and development, 42(3), 439-449.HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF3216

HPNA Clinical Practice Forum 2020 - Sept. 10-12, 2020References Osenga, K. A. (2016). Comparison of Circumstances at the End of Life in a Hospital Setting for Children with PalliativeCare Involvement Versus Those Without. Journal of Pain and Symptom Management, 52 (5), 673-680. Rogers, M. & Kirch, R. (2019). Spotlight on Pediatric Palliative Care: National Landscape of Hospital Based programs,2015-16. Center to Advanced Palliative Care. Retrieved August 19, 2020 s-2015-2016 Sisk, B. A., Feudtner, C., Bluebond-Langner, M., Sourkes, B., Hinds, P. S., & Wolfe, J. (2020). Response to Suffering of theSeriously Ill Child: A History of Palliative Care for Children. Pediatrics (Evanston), 145(1), e20191741–. United States:American Academy of Pediatrics. Spathis, A., Harrop, E., Robertshaw, C., Elverson, J., & Lapwood, S. (2012). Learning from paediatric palliative care:Lessons for adult practice. Palliative Medicine, 26(6), 777–779. London, England: SAGE Publications. World Health Organization (2020). WHO Definition of Palliative Care. Retrieved August 10, 2020 on/en/HOSPICE AND PALLIATIVE NURSE’S ASSOCIATIONVIRTUAL CLINICAL PRACTICE FORUMSEPTEMBER 10 - 12, 2020#2020CPF3317

End of Life Nursing Education Consortium, Pediatric Palliative Care – ELNEC PPC ELNEC- Pediatric Palliative Care was designed and developed by 20 pediatric palliative care experts and piloted in 2003. Each year, at least three national train -the-trainer pediatric palliative care