Implementation and lntegration of Perinatal, Neonatal, and Pediatric Palliative Care to Promote Policy Changes,

Improve Clinical Practice, and Educate Nurses

Presented by:Presented by:

Joetta Deswarte Wallace, RN, MSN, Joetta Deswarte Wallace, RN, MSN, NP-C, CHPPN NP-C, CHPPN

Vanessa Battista, MS, RN, CPNPVanessa Battista, MS, RN, CPNP

National Hospice and Palliative Care Organization (NHPCO)

November 5, 2012

• Identify barriers to improving pediatric Identify barriers to improving pediatric palliative carepalliative care

• Describe collaborative approaches to Describe collaborative approaches to enhancing implementation of palliative enhancing implementation of palliative care knowledge into policy and practicecare knowledge into policy and practice

• Develop new ideas/processes to Develop new ideas/processes to implement evidence-based knowledge implement evidence-based knowledge into the care continuuminto the care continuum

Objectives

Death of Children

• Annual Deaths in the Annual Deaths in the USUS– 53,000 <19 years of 53,000 <19 years of

age age – 800,000 miscarriages800,000 miscarriages– 33,000 stillbirths33,000 stillbirths– 19,000 neonatal 19,000 neonatal

(Field & Behrman, 2003)(Field & Behrman, 2003)

Serious and Chronic Medical Conditions of Children

• An estimated 1 million An estimated 1 million US children (10%) live US children (10%) live with life-threatening with life-threatening illnessesillnesses

• Significant gaps in Significant gaps in access to healthcare and access to healthcare and palliative carepalliative care

• Socially disadvantaged Socially disadvantaged have higher mortality have higher mortality rates at younger agesrates at younger ages

Field & Cassel, 1997; Hoyert et al., 2005; Yabroff et al., 2004

Percentage of Total Childhood Deaths by Age Group

IOM, 2003

Identified gaps: 1995 – 2001 (first course)Identified gaps: 1995 – 2001 (first course)Curriculum surveyCurriculum surveyTextbook reviewTextbook reviewEnd-of-Life (EOL) surveyEnd-of-Life (EOL) survey

• Collaboration with AACN to develop Collaboration with AACN to develop curriculum and integrate into BSN, MSN, and curriculum and integrate into BSN, MSN, and ELNEC coursesELNEC courses

-Currently 15,000 + ELNEC-trained nurses-Currently 15,000 + ELNEC-trained nursesFerrell et al., 1999Ferrell et al., 1999

History of End-of-Life Nursing Education Consortium (ELNEC)

•Identification of life-limiting conditionsIdentification of life-limiting conditions

–Ultrasound, Real-time 3D Ultrasound, Real-time 3D

•Increased awareness of needs of dyingIncreased awareness of needs of dying

newborns and their familiesnewborns and their families

•Perinatal hospice and palliative care Perinatal hospice and palliative care

•Standards of Professional PracticeStandards of Professional Practice

–NANN, AAP, NHPCO, AWHONNNANN, AAP, NHPCO, AWHONN Field & Behrman, 2003Field & Behrman, 2003

Perinatal & Neonatal Considerations

Standards of Professional Practice

• National Association of Neonatal Nurses (NANN): National Association of Neonatal Nurses (NANN):

– position statement (2006): Nurse Involvement in Ethical Decisions position statement (2006): Nurse Involvement in Ethical Decisions (Treatment of Critically Ill Newborns) (Treatment of Critically Ill Newborns) palliative care in NICU palliative care in NICU

• American Academy of Pediatrics (AAP): American Academy of Pediatrics (AAP):

– Non-initiation or withdrawal of intensive care for high-risk newborns Non-initiation or withdrawal of intensive care for high-risk newborns

• National Hospice and Palliative Care Organization (NHPCO): National Hospice and Palliative Care Organization (NHPCO):

– standards for pediatric palliative care & hospice standards for pediatric palliative care & hospice

• Association of Women’s Health, Obstetrics, and Neonatal Nurses Association of Women’s Health, Obstetrics, and Neonatal Nurses (AWHONN): (AWHONN):

– perinatal bereavement curriculum and standards for nursing practice in perinatal bereavement curriculum and standards for nursing practice in the care of newbornsthe care of newborns

History of Pediatric Palliative Care

• When Children DieWhen Children Die

Institute Of Medicine (IOM) Report (2003) Institute Of Medicine (IOM) Report (2003)

““Integrating effective palliative care Integrating effective palliative care from the time a child’s life-threatening from the time a child’s life-threatening medical problem is diagnosed medical problem is diagnosed will improve care for children will improve care for children who survive as well as children who survive as well as children who die - and will help the families who die - and will help the families of all these children.” of all these children.”

IOM Consensus Definition

Palliative care seeks to: Palliative care seeks to: – Prevent or relieve the symptoms Prevent or relieve the symptoms

produced by a life-threatening medical produced by a life-threatening medical condition or its treatmentcondition or its treatment

– Help children with such conditions and Help children with such conditions and their families live as normally as their families live as normally as possiblepossible

– Provide families with timely and Provide families with timely and accurate information to aide in accurate information to aide in decision makingdecision making

• Training programs Training programs - classes classes - web-based coursesweb-based courses

• ELNEC Train-the-Trainer Courses: ELNEC Train-the-Trainer Courses: - face-to-face courses internationally: 76 countriesface-to-face courses internationally: 76 countries- 1600 + ELNEC-PPC trained nurses1600 + ELNEC-PPC trained nurses

ELNEC, 2012; EPIC, 2011; Hospice Education Network, 2012ELNEC, 2012; EPIC, 2011; Hospice Education Network, 2012

Pediatric Palliative Care Training

• ELNEC-Pediatric Palliative Care ELNEC-Pediatric Palliative Care

- First National Trainers Conference – August 2003- First National Trainers Conference – August 2003

Curriculum:Curriculum:• Introduction to PPCIntroduction to PPC• Perinatal & Neonatal PCPerinatal & Neonatal PC• CommunicationCommunication• Ethical/LegalEthical/Legal• Cultural/Spiritual Cultural/Spiritual

ELNEC-PPC, 2012ELNEC-PPC, 2012

ELNEC: Pediatric Palliative Care (PPC)

• Pain ManagementPain Management• Symptom ManagementSymptom Management• Care at DeathCare at Death• GriefGrief• Models of ExcellenceModels of Excellence

Curative CareCurative Care

Anticipatory Anticipatory Bereavement CareBereavement Care

Supportive CareSupportive CareEnd-of-Life CareEnd-of-Life Care

After Death After Death Bereavement CareBereavement Care

Context & Challenges

• More children are now More children are now surviving and living longersurviving and living longer

• Differing patterns of child Differing patterns of child mortality mortality – 50% all deaths in 50% all deaths in

infancyinfancy– 30% deaths from injury30% deaths from injury

• Unique issuesUnique issues– Not small adultsNot small adults

IOM Report, 2003IOM Report, 2003

Challenge 1:

DEFINING DEFINING

PEDIATRIC PEDIATRIC

PALLIATIVE CAREPALLIATIVE CARE

Challenge 2:

BETTER UNDERSTANDING BETTER UNDERSTANDING THE NEEDS OF CHILDREN THE NEEDS OF CHILDREN WITH LIFE-THREATENING WITH LIFE-THREATENING CONDITIONS AND THEIR CONDITIONS AND THEIR

FAMILIESFAMILIES

Challenge 3:

LIMITED ACCESS AND RESOURCES LIMITED ACCESS AND RESOURCES

FOR SPECIALIZED SERVICESFOR SPECIALIZED SERVICES

Challenge 4:

FRAGMENTED CAREFRAGMENTED CARE

Challenge 5:

COMMUNICATIONCOMMUNICATION

Challenge 6:

INAPPROPRIATE CONTINUATION OF USE OF INAPPROPRIATE CONTINUATION OF USE OF

ADVANCED LIFE-SAVING TECHNOLOGYADVANCED LIFE-SAVING TECHNOLOGY

Challenge 7:

ETHICAL AND LEGAL ISSUESETHICAL AND LEGAL ISSUES

Challenge 8:

INTEGRATING INTEGRATING CULTURE AND CULTURE AND

SPIRITUALITY INTO SPIRITUALITY INTO PALLIATIVE CAREPALLIATIVE CARE

Challenge 9:

UNCERTAINUNCERTAIN

PROGNOSISPROGNOSIS

Davies, et al. 2008

Challenge 10:

INADEQUATE ASSESSMENT AND INADEQUATE ASSESSMENT AND

MANAGEMENT OF SYMPTOMSMANAGEMENT OF SYMPTOMS

Challenge 11:

FAMILY NOT READY TOFAMILY NOT READY TO

ACKNOWLEDGEACKNOWLEDGE

INCURABLE CONDITION INCURABLE CONDITION

Challenge 12:

INTEGRATING KNOWLEDGE INTEGRATING KNOWLEDGE

OF PALLIATIVE CARE INTO OF PALLIATIVE CARE INTO

CURRICULUM AND CURRICULUM AND

TRAINING PROGRAMSTRAINING PROGRAMS Liben, Papadatou, and Wolfe, 2008Liben, Papadatou, and Wolfe, 2008

Challenge 13:

TEAM CHALLENGESTEAM CHALLENGES

– Preconceived ideas EOL vs. palliative Preconceived ideas EOL vs. palliative carecare

– Overlapping rolesOverlapping roles•““We’re already doing it”We’re already doing it”•““Undermining” care planUndermining” care plan•““Taking over”Taking over”

Challenge 14:

ACKNOWLEDGING ACKNOWLEDGING

PROFESSIONALS’ PROFESSIONALS’

RESPONSES AND RESPONSES AND

NEED FOR SUPPORTNEED FOR SUPPORT

End-of-Life Decisions for Child: Parents’ Perspectives

Questionnaire: Questionnaire:

-56 families: 36 mothers and 20 fathers-56 families: 36 mothers and 20 fathers

Identified 6 priorities for EOL care:Identified 6 priorities for EOL care:– Honest and complete informationHonest and complete information– Ready access to care staffReady access to care staff– Emotional expression and support by staffEmotional expression and support by staff– Communication and care coordinationCommunication and care coordination– Preservation of integrity of parent-child relationshipPreservation of integrity of parent-child relationship– Acceptance of spirituality and religious faith Acceptance of spirituality and religious faith

PediatricsPediatrics, September 2007,102(3), September 2007,102(3)

Overcoming Barriers

• Clinical CareClinical Care– Establish area-specific triggers for palliative care team Establish area-specific triggers for palliative care team

consultsconsults– Establish a bereavement programEstablish a bereavement program

• EducationEducation– Help clinicians learn communication strategies for Help clinicians learn communication strategies for

discussing difficult topics discussing difficult topics

• TrainingTraining– Facilitate nurse support groups in critical areas to learn Facilitate nurse support groups in critical areas to learn

new coping skillsnew coping skills

• ResearchResearch– Why do some families decline hospice?Why do some families decline hospice?– What do parents think of the palliative care service?What do parents think of the palliative care service?

Best Practices: Nurses and Other Interdisciplinary Team Members

• Schools of NursingSchools of Nursing• Continuing EducationContinuing Education• Children’s HospitalsChildren’s Hospitals• HospicesHospices• National EffortsNational Efforts• International EffortsInternational Efforts

PPC at Boston College School of Nursing: Grant Overview

• The Pediatric Palliative Care Program at Boston College is The Pediatric Palliative Care Program at Boston College is

funded by U.S Department of Health and Human Services, funded by U.S Department of Health and Human Services,

Health Resources and Services Administration (HRSA)Health Resources and Services Administration (HRSA)

• Began with an Adult Palliative Care Program Grant in 2006Began with an Adult Palliative Care Program Grant in 2006• Pediatrics began as an extension of the adult program Pediatrics began as an extension of the adult program

• Adult Palliative Care Program is currently ongoingAdult Palliative Care Program is currently ongoing

• Pediatric Palliative Care Program will continue into 2013 Pediatric Palliative Care Program will continue into 2013

Grant Objectives

1.1. Advisory BoardAdvisory Board

2.2. DiversityDiversity

3.3. Student RecruitmentStudent Recruitment

4.4. Clinical PlacementsClinical Placements

5.5. Community LinkagesCommunity Linkages

Curriculum and Courses

• Summer Course: NU 640: Palliative Care I: Summer Course: NU 640: Palliative Care I: Foundations of Life-Threatening Illness, Disease Foundations of Life-Threatening Illness, Disease Progression and Quality of LifeProgression and Quality of Life– Year 1: 29 students enrolled/completed the courseYear 1: 29 students enrolled/completed the course– Year 2: 40 students enrolled/completed the courseYear 2: 40 students enrolled/completed the course– Year 3: 16 students enrolled/completed the courseYear 3: 16 students enrolled/completed the course

• Fall Course: NU 645: Pediatric Palliative Care II: Pain Fall Course: NU 645: Pediatric Palliative Care II: Pain and Symptoms and Suffering in the Child with Life-and Symptoms and Suffering in the Child with Life-Threatening IllnessThreatening Illness– Year 2: 7 students enrolled/completed the courseYear 2: 7 students enrolled/completed the course– Year 3: 13 students enrolled/completed the courseYear 3: 13 students enrolled/completed the course

• Spring Course: NU643: Palliative Care III: Palliative Spring Course: NU643: Palliative Care III: Palliative Care and the Advanced Practice Nursing RoleCare and the Advanced Practice Nursing Role– Year 2: 12 students enrolled/completed the courseYear 2: 12 students enrolled/completed the course– Year 3: 13 students enrolled/completed the courseYear 3: 13 students enrolled/completed the course

Hospital Based Program

• Grant-funded for 2 yearsGrant-funded for 2 years• NP onlyNP only• Educational FocusEducational Focus

Interdisciplinary Focus Groups

• General PediatricsGeneral Pediatrics• Hematology/OncologyHematology/Oncology• Pediatric Intensive Care UnitPediatric Intensive Care Unit• Neonatal Intensive Care UnitNeonatal Intensive Care Unit• Perinatal Perinatal

Results of Hospital Based Program

• Staff needs assessmentStaff needs assessment• Diagnostic triggersDiagnostic triggers• Annual goals and Annual goals and

accomplishmentsaccomplishments

Conclusions

• There are several barriers to PPC.There are several barriers to PPC.• Collaborative approaches are Collaborative approaches are

necessary to implement palliative care necessary to implement palliative care knowledge into policy and practice.knowledge into policy and practice.

• New ideas and processes enhance the New ideas and processes enhance the integration of evidence-based integration of evidence-based knowledge into the care continuum.knowledge into the care continuum.

•

• Davies, B., Sehring, S. A., Partridge, J. C., Cooper, B. A., Hughes, A., Philip, J. C., et Davies, B., Sehring, S. A., Partridge, J. C., Cooper, B. A., Hughes, A., Philip, J. C., et al. (2008). al. (2008). Barriers to palliative care for children: Perceptions of Barriers to palliative care for children: Perceptions of

pediatric health pediatric health care providers. care providers. Pediatrics, 121Pediatrics, 121(2), 282-8. (2), 282-8. • Education in Palliative and End-of-life Care (EPEC). Retrieved July 7, 2012 from Education in Palliative and End-of-life Care (EPEC). Retrieved July 7, 2012 from http

://epec.net/• End-of-Life Nursing Education Consortium. (2012). End-of-Life Nursing Education Consortium. (2012). ELNEC-PPC. ELNEC-PPC. Duarte, CA: City of Duarte, CA: City of

Hope.Hope.• Ferrell, B.R, Virani, R., & Grant, M. (1999). Analysis of end-of-life content in nursing Ferrell, B.R, Virani, R., & Grant, M. (1999). Analysis of end-of-life content in nursing

textbooks. textbooks. Oncology Nursing Forum, 26Oncology Nursing Forum, 26(5), 869-876.(5), 869-876.• Field, M.J., & Behrman, R.E. (Eds). (2003). Field, M.J., & Behrman, R.E. (Eds). (2003). When children die: Improving palliative and When children die: Improving palliative and

end-of-life end-of-life care for children and their familiescare for children and their families. Washington, D.C.: . Washington, D.C.: National National Academy Press.Academy Press.

• Field, M. J., & Cassel, C. K. (Eds.). (1997). Field, M. J., & Cassel, C. K. (Eds.). (1997). Approaching death: Improving care at the Approaching death: Improving care at the end of life end of life [Report of the Institute of Medicine Task Force]. [Report of the Institute of Medicine Task Force].

Washington, DC: Washington, DC: National Academy National Academy Press. Press. • Hospice Education Network. (2012). Hospice Education Network. (2012). Welcome to HEN-the best online training.Welcome to HEN-the best online training. Retrieved Retrieved

July 5, 2012 from July 5, 2012 from http://hospiceonline.com/• Hoyert, D. L., Heron, M. P., Murphy, S. L., & Kung, H. C. (2006). Deaths: final data for Hoyert, D. L., Heron, M. P., Murphy, S. L., & Kung, H. C. (2006). Deaths: final data for

2003. 2003. National Vital Statistics Report, 54National Vital Statistics Report, 54(13), 1-120. (13), 1-120. • Liben, S., Papadatou, D., & Wolfe, J. (2008). Paediatric palliative care: challenges andLiben, S., Papadatou, D., & Wolfe, J. (2008). Paediatric palliative care: challenges and

emerging ideas. emerging ideas. LancetLancet, 371, 852-864. , 371, 852-864. • Yabroff, K. R., Mandelblatt, J.S., & Ingham, J. (2004). The quality of medical care at the end Yabroff, K. R., Mandelblatt, J.S., & Ingham, J. (2004). The quality of medical care at the end

of life in of life in the USA: Existing barriers and examples of process and outcome measures. the USA: Existing barriers and examples of process and outcome measures. Palliative Palliative Medicine, 18Medicine, 18(3), 202-216.(3), 202-216.

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