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

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 Carolinacormackc@musc.edu

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 Carolinacormackc@musc.edu#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