elnec...elnec-pediatric palliative care e l n e c pediatric palliative care nurses play a key role...

201611MW_6633

ELNEC END-OF-LIFE NURSING EDUCATION CONSORTIUM

Pediatric Palliative Care Train-the-Trainer

Presented at

Copyright City of Hope and American Association of Colleges of Nursing, 2003; Revised 2015. The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from The Robert Wood Johnson Foundation with additional support from funding organizations (Aetna Foundation, Archstone Foundation, California HealthCare Foundation, Cambia Health Foundation, Milbank Foundation, National Cancer Institute, Oncology Nursing Foundation, Open Society Institute/Foundation and Department of Veterans Affairs). Further information about the ELNEC Project can be found at www.aacn.nche.edu/ELNEC.

ELNEC END-OF-LIFE NURSING EDUCATION CONSORTIUM

Pediatric Palliative Care

FACULTY GUIDE

AGENDA

Copyright City of Hope and American Association of Colleges of Nursing, 2003; Revised 2015. The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from The Robert Wood Johnson Foundation with additional support from funding organizations (Aetna Foundation, Archstone Foundation, California HealthCare Foundation, Cambia Health Foundation, Milbank Foundation, National Cancer Institute, Oncology Nursing Foundation, Open Society Institute/Foundation and Department of Veterans Affairs). Further information about the ELNEC Project can be found at www.aacn.nche.edu/ELNEC.

ELNEC-Pediatric Palliative Care Train-the-Trainer Table of Contents I. Acknowledgements II. Faculty Bios III. Introduction

• Introduction to ELNEC-Core and ELNEC-Pediatric Palliative Care • News Release • Textbook Ordering Information • ELNEC Copyright Permission • Use of ELNEC Materials • HPNA/HPNF/HPCC

Page IV. Module 1: Introduction to Pediatric Palliative Care Nursing Module Overview .............................................................................................M1-1 Key Messages ...................................................................................................M1-1 Objectives .........................................................................................................M1-1 Participant Outline ............................................................................................M1-2 Faculty Outline ..................................................................................................M1-4 Key References .................................................................................................M1-41 Case Studies ......................................................................................................M1-47 Supplemental Teaching Materials/Training Session Guides ............................M1-50 V. Module 2: Perinatal and Neonatal Palliative Care Module Overview .............................................................................................M2-1 Key Messages ...................................................................................................M2-1 Objectives .........................................................................................................M2-1 Participant Outline ............................................................................................M2-2 Faculty Outline ..................................................................................................M2-3 Key References .................................................................................................M2-47 Case Studies ......................................................................................................M2-54 Supplemental Teaching Materials/Training Session Guides ............................M2-57 VI. Module 3: Communication Module Overview .............................................................................................M3-1 Key Messages ...................................................................................................M3-1 Objectives .........................................................................................................M3-1 Participant Outline ............................................................................................M3-2 Faculty Outlines Section I .......................................................................................................M3-4 Section II ......................................................................................................M3-20 Key References .................................................................................................M3-39 Case Studies ......................................................................................................M3-43 Supplemental Teaching Materials/Training Session Guides ............................M3-48

VII. Module 4: Ethical/Legal Issues Module Overview .............................................................................................M4-1 Key Messages ...................................................................................................M4-1 Objectives .........................................................................................................M4-1 Participant Outline ............................................................................................M4-2 Faculty Outline ..................................................................................................M4-4 Key References .................................................................................................M4-43 Case Studies ......................................................................................................M4-48 Supplemental Teaching Materials/Training Session Guides ............................M4-52 VIII. Module 5: Cultural Considerations Module Overview .............................................................................................M5-1 Key Messages ...................................................................................................M5-1 Objectives .........................................................................................................M5-1 Participant Outline ............................................................................................M5-2 Faculty Outline ..................................................................................................M5-3 Key References .................................................................................................M5-26 Case Studies ......................................................................................................M5-30 Supplemental Teaching Materials/Training Session Guides ............................M5-34 IX. Module 6: Pain Management Module Overview .............................................................................................M6-1 Key Messages ...................................................................................................M6-1 Objectives .........................................................................................................M6-1 Participant Outline ............................................................................................M6-2 Faculty Outlines Section I .......................................................................................................M6-6 Section II ......................................................................................................M6-24 Section III .....................................................................................................M6-35 Section IV ....................................................................................................M6-52 Section V ......................................................................................................M6-72 Key References .................................................................................................M6-90 Case Studies ......................................................................................................M6-102 Supplemental Teaching Materials/Training Session Guides ............................M6-106

X. Module 7: Symptom Management Module Overview .............................................................................................M7-1 Key Messages ...................................................................................................M7-1 Objectives .........................................................................................................M7-1 Participant Outline ............................................................................................M7-2 Faculty Outline Section I .......................................................................................................M7-5 Section II ......................................................................................................M7-15 Section III .....................................................................................................M7-29 Section IV ....................................................................................................M7-46 Key References .................................................................................................M7-64 Case Studies ......................................................................................................M7-70 Supplemental Teaching Materials/Training Session Guides ............................M7-74 XI. Module 8: Loss, Grief and Bereavemnt Module Overview .............................................................................................M8-1 Key Messages ...................................................................................................M8-1 Objectives .........................................................................................................M8-1 Participant Outline ............................................................................................M8-2 Faculty Outline ..................................................................................................M8-4 Key References .................................................................................................M8-48 Case Studies ......................................................................................................M8-51 Supplemental Teaching Materials/Training Session Guides ............................M8-55 XII. Module 9: Care at the Time of Death Module Overview .............................................................................................M9-1 Key Messages ...................................................................................................M9-1 Objectives .........................................................................................................M9-1 Participant Outline ............................................................................................M9-2 Faculty Outline ..................................................................................................M9-5 Key References .................................................................................................M9-43 Case Studies ......................................................................................................M9-47 Supplemental Teaching Materials/Training Session Guides ............................M9-52 XIII. Module 10: Models of Excellence in Pediatric Palliative Care Module Overview .............................................................................................M10-1 Key Messages ...................................................................................................M10-1 Objectives .........................................................................................................M10-1 Participant Outline ............................................................................................M10-2 Faculty Outline ..................................................................................................M10-3 Key References .................................................................................................M10-25 Case Studies ......................................................................................................M10-29 Supplemental Teaching Materials/Training Session Guides ............................M10-33

XVI. Leadership Module Overview .............................................................................................Lead-1 Key Messages ...................................................................................................Lead-1 Objectives .........................................................................................................Lead-1 Participant Outline ............................................................................................Lead-2 Faculty Outline ..................................................................................................Lead-4 Key References .................................................................................................Lead-29 XV. Reference Lists Master Reference List .......................................................................................Ref-1 Bibliography for Children/Parents ....................................................................Ref-40

Publications Related to ELNEC ........................................................................Ref-45

XVI. Video Resources XVII. City of Hope Pain/Palliative Care Resource Center Index Please note that you will receive all of the information listed in the Table of Contents so you may train other professionals.

1

Introduction to the ELNEC Pediatric Palliative Care

Curriculum

CENLEEnd-of-Life Nursing Education Consortium


CENLE Pediatric Palliative Care


ELNEC-Pediatric Palliative Care


Nurses Play a Key Role in Pediatric Palliative Care

n No other healthcare professional spends more time at the bedside than the nurse, supporting

Physical needsPsychological needsSocial needsSpiritual needs

2


However……

WE CAN NOT PRACTICE WHAT WE DO NOT KNOW!


Partnership Established

n City of HopeTextbooksCurriculaLack of faculty knowledge

n American Association of Colleges of Nursing

Peaceful Death Document: BSN Competencies in EOL care


Results of This Partnership….E L N E C

n 2000: Curriculum Developedn 2001: 1st National ELNEC Coursen Currently 4 ELNEC Curricula:n ELNEC-Core n ELNEC-Geriatric n ELNEC-Pediatric Palliative Care n ELNEC-Critical Care

3


15 Years and 19,000+ National Trainers Later…..


International Efforts to Disseminate ELNEC

n Presented in 6 of the 7 continents

n Representing 84 countries

Teaching ELNEC coursesPresenting at international conferencesMeeting with Ministers of Health, Faculty in Schools of Nursing, etc


Austria, Germany, India, Israel, Japan, Kenya, Korea, Mexico, New Zealand Philippines, Tajikistan, Tanzania, etc.

4


ELNEC-International Translated in 7 Languages

n RUSSIAN: Добрый день n ROMANIANn ARMENIANn SPANISH: Buenos Dias, Amigosn JAPANESE:

n KOREAN:

n GERMAN: Guten Tag, mein Freund!!


10 ELNEC Modules: Addressing Pediatric Palliative Care

n #1: Introduction to Pediatric Palliative Care Nursing

n #2: Perinatal & Neonatal

n #3: Communicationn #4: Ethical Issuesn #5: Cultural

Considerations

n #6: Pain Managementn #7: Symptom Managementn #8: Loss, Grief,

Bereavementn #9: Prep at the Time of

Death n #10: Models of Excellence


Throughout The Ten Modules Of ELNEC-Pediatric Palliative Care, There Are Certain Themes…

5


#1: Family as the Unit of Care


#2: Vital Role of the Nurse as Advocate


#3: Importance of Honoring Culture

6


#4: Attention to Special Populations


#5: End-Of-Life Issues Impact All Systems of Care


#6: Financial Issues Influence End-of-Life Care

7


#7: Common In Not Only Cancer & AIDS, But Also Other Life-Threatening Illnesses/Sudden Death


#8: Interdisciplinary Care is Essential


ELNEC Website:www.aacn.nche.edu/ELNEC

n ELNEC Connectionsn List of ELNEC trainers by

staten International up-datesn List of future national and

regional ELNEC coursesn Resources to assist you in

planning trainingn Publicationsn So much more……

8


During These Next Days…..

n Learnn Sharen Networkn Commit to:

Providing palliative care education Improving systems of careBuilding relationships with those you can work with to accomplish your goalsHaving a visionBeing a LEADER


Final Thought…..

“If you want to build a ship, don’t drum up the people to gather wood, divide the work, and give orders. Instead, teach them to yearn for the vast and endless sea.”

Antoine De Saint-ExuperyAuthor of The Little Prince

ELNEC Project Office

City of Hope Division of Nursing Research & Education

1500 E. Duarte Rd., Duarte, CA 91010 Tel: 626.256-.4673 ♦ Fax: 626.301.8941

www.aacn.nche.edu/elnec

ELNEC Project Copyright Permission

Updated January 2015 1. Disclaimer. The intent of this curriculum is to enhance palliative care by providing educational resources

for nurses. Neither the End-of-Life Nursing Education Consortium (ELNEC) Project nor the funding organizations (the Robert Wood Johnson Foundation, the National Cancer Institute (NCI), and the Aetna, Archstone, California HealthCare, Milbank Oncology Nursing, Open Society, and Cambia Foundations, and the Department of Veterans Affairs) endorse any of the medications, products, or treatments described, mentioned, or discussed in this curriculum, nor make any representations concerning the efficacy, appropriateness, or suitability of any particular therapy. Please note that this curriculum and the information contained herein is provided for educational reference purposes only. Treatment decisions should be made only after careful assessment of the status and needs of a particular case. In view of the possibility of human error or advances in medical knowledge, neither the ELNEC Project nor the funding organizations warrant that the information contained herein is in every respect accurate or complete. They are neither responsible nor liable for any errors or omissions that may be found in such information or for the results obtained from the use of such information.

2. Curriculum materials. Copyright for the ELNEC Project curriculum is held by City of Hope (COH) and

the American Association of Colleges of Nursing (AACN). The copyright includes items in the syllabus not specifically attributed to other sources. Those who have completed the ELNEC Project training course are granted permission to duplicate and/or modify ELNEC materials for use in their facilities. These materials include content outlines, slides, and many instructional resources. ELNEC materials may not be published, posted electronically, or distributed outside of a course/class without prior approval by COH and AACN. For approval, please contact: Pam Malloy at [email protected]

.

3. Attribution. When using ELNEC curriculum materials in any form, clear attribution to the program is expected. The following statement is to be displayed prominently in instructional materials: The End-of-Life Nursing Education Consortium (ELNEC) Project is a national end-of-life educational program administered by City of Hope (COH) and the American Association of Colleges of Nursing (AACN) designed to enhance palliative care in nursing. The ELNEC Project was originally funded by a grant from the Robert Wood Johnson Foundation. Additional funding has been received from the Cambia, Millbank, Oncology Nursing, Open Society, Aetna, Archstone, California HealthCare Foundations, National Cancer Institute (NCI), and the Department of Veterans Affairs (VA). Materials are copyrighted by COH and AACN and are used with permission. Further information about the ELNEC Project can be found at www.aacn.nche.edu/ELNEC

.

4. ELNEC Project resources attributed to others. The ELNEC curriculum contains some resources originally developed or copyrighted by others. These items are used with permission, and the original source is clearly identified. ELNEC participants may duplicate and use these items as they appear in the ELNEC curriculum, for in-person classes or similar direct instruction, and are expected to recognize the original





author/source as cited in the ELNEC materials. These items may not be published, modified, reformatted, or used in other ways without the permission of the original author/source.

5. Exceptions. ELNEC copyright permission does not extend the textbook (Oxford Textbook of Palliative

Nursing, 4th Edition, 2015), used in the course. 6. For additional information, refer to “Use of ELNEC Materials” at www.aacn.nche.edu/ELNEC. Betty Ferrell, PhD, RN, FAAN, FPCN Pam Malloy Research Scientist Co- Investigator, ELNEC Principal Investigator, ELNEC American Association of Colleges of Nursing (AACN) City of Hope Washington, DC Duarte, CA [email protected] [email protected] ELNEC Project Copyright ©2000 COH & AACN All rights reserved

mailto:[email protected]�






Use of ELNEC Materials Updated January 2015

Participants who complete a national ELNEC course sponsored by AACN/City of Hope are considered ELNEC Trainers, part of a national network of specially-prepared nurse educators who are qualified to teach ELNEC content to others. A list of ELNEC Trainers is maintained on the ELNEC Web site (www.aacn.nche.edu/elnec), in order to facilitate collaboration with and among ELNEC Trainers. In addition, local trainer courses are held around the country. While considered ELNEC Trainers, these “second generation” trainers are not listed on the national trainer list, but may sponsor training activities as described below. ELNEC Trainers may incorporate ELNEC content into already-developed programs, or create new educational activities for specific audiences. They are expected to use ELNEC materials, and may adapt the materials as described in the “ELNEC Copyright Permission” (also on the Web site). ELNEC Trainers must coordinate educational activities, but may utilize other qualified faculty as appropriate. Educational activities fall into the following categories: 1. End-of-Life Education. This consists of short programs of less than nine hours, and/or less than all nine ELNEC

modules. These short end-of-life care courses may have a variety of general titles (E.g., end of life care), but may not be called ELNEC training.

2. ELNEC Training. Any educational activity that utilizes ELNEC materials, includes all ELNEC modules, and

consists of a minimum of one hour per module is considered “ELNEC Training.” These programs must be coordinated through the ELNEC Project Office, so that the integrity of the ELNEC curriculum is assured, and the Project Office is aware of the ELNEC training occurring around the country. Those who complete this type of program may be designated as “ELNEC Trained”. Although interdisciplinary audiences and students often are invited to these courses, ELNEC training is primarily designed for registered nurses. Non-RN nursing students may not receive this designation.

3. Trainer Conferences or Train-the-Trainer Programs. These are two or three-day conferences designed to teach a

group of professional nurses to become trainers of the ELNEC curriculum, usually within a specific healthcare system or geographic area. Participants who complete the program are designated as “ELNEC Trainers”, although they are not part of the national network described above. In these trainer courses, all modules must be covered, with approximately one hour devoted to content and approximately one hour devoted to teaching strategies and resources for each module. Requests to host this type of course are individually considered, and courses are planned in close collaboration with the ELNEC Project Office. Sponsorship of trainer courses is not authorized unless this prior coordination has occurred.

4. Nontraditional Activities. Although ELNEC Trainers are encouraged to use creative approaches to teach this

specialized content, in-person classes are the preferred vehicle. Any other proposed use must be coordinated in advance through the ELNEC Project Office. This includes posting on an agency intranet, offering classes via distance technology, preparing self-study materials, or an entrepreneurial approach. ELNEC content may not be posted to the Internet or published by ELNEC Trainers.

For further information or questions, contact Pam Malloy at [email protected]

http://www.aacn.nche.edu/elnec�


Advancing Expert CareThrough Certification

HPCC certifies more than 18,000 hospice and palliative healthprofessionals throughout the United States. We are the only nursing

specialty that certifies all members of the nursing team, as well asadministrators and perinatal loss care professionals.

Advanced Practice Registered Nurses Registered Nurses Pediatric Registered Nurses Licensed Practical/Vocational Nurses Nursing Assistants Administrators Perinatal Loss Care Professionals

For more information about HPCC

Please visit our website:www.goHPCC.org

T. 412-787-1057E. [email protected]

Frequently Asked Questions

Why seek certification?

Certification validates an individual’s competence and knowledge in the specialized area of hospiceand palliative care. Certification is highly valued and provides formal recognition of achieving astandard of knowledge in the specialty of hospice and palliative care. Research studies also confirmthe value placed on certification.

Who is eligible for certification?

Eligibility criteria for each exam is fully described in each Candidate Handbookavailable on our website, www.goHPCC.org.

When are the exams offered?

These seven computer based exams are offered during fourone-month testing windows (March, June, September, orDecember) at more than 180 Applied MeasurementProfessionals (AMP) test assessment locationsacross the United States.

How do I apply?

Candidates can apply online or by submittinga paper application for the certificationexams. To apply, visit www.goHPCC.org.The paper application is available in theCandidate Handbook.

One Penn Center West, Suite 425, Pittsburgh, PA 15276 ~ 412-787-1057 ~ www.goHPCC.org

How long is my certification valid?

Certification is valid for a four-year period. Your certification must be renewed in order to bemaintained.

How do I obtain a Candidate Handbook?

There is a separate Candidate Handbook for each exam that can be downloaded from our website atwww.goHPCC.org. It is the responsibility of the applicant to read the Candidate Handbook in itsentirety prior to applying for the certification exam.

The value of certification

Certificants achieve a tested and proven competency across the spectrum of hospice andpalliative care.

Certificants increase their knowledge of hospice and palliative care by seeking andmaintaining certification.

Certificants demonstrate a commitment to their specialty practice by pursuing certification. Certificants demonstrate dedication to professional development in their careers by attaining

the credential. Certificants are assets to themselves because the commitment to certification improves

patient outcomes, provides compensation incentives, and gains industry-wide recognition. Certificants are assets to their employers, because board certification is a recognized quality

marker by patients, physicians, providers, quality organizations, insurers, credentialers, andthe federal government in an atmosphere of increasing awareness regarding quality in healthcare and appropriate utilization of services.

Benefits of certification for the certificants

Once certified, the advanced practice registered nurse, registered nurse, pediatric registered nurse,licensed practical/vocational nurse, nursing assistant, administrator, or perinatal loss careprofessional is:

Entitled to use the appropriate credentials during the certification period:

o ACHPN®: Advanced Certified Hospice and Palliative Nurseo CHPN®: Certified Hospice and Palliative Nurseo CHPPN®: Certified Hospice and Palliative Pediatric Nurseo CHPLN®: Certified Hospice and Palliative Licensed Nurseo CHPNA®: Certified Hospice and Palliative Nursing Assistanto CHPCA®: Certified Hospice and Palliative Care Administratoro CPLC®: Certified in Perinatal Loss Care

Eligible to serve on the HPCC Board of Directors Eligible to serve on an Examination Development Committee or to join HPCC project teams Honored at the Annual Certification Recognition Event Provided the HPCC Certification Newsletter Eligible for a discount with renewal of certification Eligible for HPCC and Hospice and Palliative Nurses Foundation awards, scholarships, and

grants Able to access to a national network of experienced and knowledgeable hospice and

palliative professionals

Accreditation

HPCC is proud to have achieved accreditation for the Advanced Certified Hospice and PalliativeNurse examination and the Certified Hospice and Palliative Nurse examination through theAccreditation Board for Specialty Nursing Certification (ABSNC).

One Penn Center West, Suite 425, Pittsburgh, PA 15276 ~ 412-787-1057 ~ www.goHPCC.org

_____________________________________________________________________________________________________________________ ELNEC Pediatric Palliative Care Acknowledgements Page A-1 © COH & AACN, 2003 Revised: March 2015

ELNEC - Pediatric Palliative Care Acknowledgements City of Hope:

Betty R. Ferrell, PhD, FAAN, FPCN, CHPN Principal Investigator, ELNEC Email: [email protected] Andrea Garcia-Ortiz, MBA Project Coordinator, ELNEC- International Email: [email protected] Linda Garcia, BA Project Coordinator, ELNEC Email: [email protected]

Rose Virani, RNC, MHA, OCN®, FPCN Senior Project Director, ELNEC Email: [email protected] Lauren Wilson, BA Project Coordinator, ELNEC Email: [email protected] Jose Llanas Clerical Support, ELNEC Email: [email protected]

American Association of Colleges of Nursing:

Pam Malloy, RN, MN, OCN®, FPCN Co-Investigator, ELNEC Email: [email protected]

ELNEC Website:

For updates, newsletters and information http://www.aacn.nche.edu/elnec


Pediatric Contributors/Reviewers

Vanessa Battista, RN, MS, CPNP, CCRC Clinical Faculty Boston College William F. Connell School of Nursing Pediatric Nurse Practitioner The Children's Hospital of Philadelphia Philadelphia, PA

Vicky Bowden, DNSc, RN Professor Azusa Pacific University Society of Pediatric Nurses Azusa, California

James “Greg” Burns, RN, CPON Nursing Director Jason Program Maine State Pediatric Hospice/Palliative Care Initiative

Anita Catlin, DNSc, FNP, FAAN Ethics Consultant Associate Professor of Nursing Sonoma State University Sonoma, CA

Margaret Conway-Orgel, MSN, NNP Medical University of South Carolina National Association of Neonatal Nurses Charleston, SC

Betty Davies, RN, PhD Professor, School of Nursing University of California, San Francisco San Francisco, CA

Susan Dulczak, MSN, RNCS, PNP The Children's Hospital of Philadelphia Association of Pediatric Oncology Nurses Philadelphia, PA

Janet Duncan, MSN, RN Children’s Hospital Pediatric Palliative Care Interdisciplinary Consult Service Boston, MA

Nancy English, PhD, RN The Children’s Hospital Denver, CO

Carolyn Hames, RN, MN, CDE Asst. Professor, College of Nursing/Honors University of Rhode Island Kingston, RI

Cathy Haut, MS, CPNP, CCRN National Certification Board of Pediatric Nurse Practitioners (NCBPNP) Gaithersburg, MD

Melody Hellsten, RN, APRN-BC, PNP Pediatric Nurse Practitioner UTHSCSA, Department of Pediatrics Program Coordinator Pediatric Supportive and Palliative Care CHRISTUS Santa Rosa Children’s Hospital San Antonio, TX

Pamela Hinds, PhD, RN Director of Nursing Research Center for Clinical and Community Research Children’s National Medical Center Washington DC

Marilyn Hockenberry, PhD, PNP, CPON, FAAN Researcher Texas Children’s Hospital Houston, TX


Sue Huff, RN, MSN Director, Essential Care Pediatric Program Center for Hospice and Palliative Care Cheektowaga, NY

Hollye Harrington Jacobs, RN, MS, MSW Consultant Dream Foundation Santa Barbara, CA

Dolores Jones, EdD, RN, CPNP National Association of Pediatric Nurse

Practitioners Jacksonville, FL

Carole Kenner, DNS, RNC, FAAN Dean/Professor University of Oklahoma Health Science

Center, College of Nursing, Neonatal Nursing

Oklahoma City, OK Deborah LaFond, MS, RNCS, PNP, CPON

Advanced Practice Clinician Children's National Medical Center Washington, DC

Mary Layman-Goldstein, RN, MS, OCN Memorial Sloan-Kettering NP, Supportive Care Program Pain & Palliative Care Service New York, NY

Marcia Levetown, MD Pain & Palliative Care Education Consultant University of Texas – Medical Branch (UTMB) Galveston, TX

Tiffany Levinson, RN, MS, CHPN Pediatric Palliative Care Consultant Evanston, IL

Maureen McLaughlin, PhD, RN Palliative Care Consultant Bristow, VA Cynda Rushton, PhD, FAAN John Hopkins – Bioethics Institute Baltimore, MD

Patty Pian, RN, CHPN Rady Children’s Hospital San Diego, CA Lizabeth Sumner, RN, BSN Director, The Center for Compassionate Care The Elizabeth Hospice Escondido, CA

Christy Torkildson, RN, PHN, MSN Program Director George Mark Children’s House Oakland, CA

Lois VanCleve, PhD, RN Professor Loma Linda University Loma Linda, CA

Elizabeth Voyles, RN Children’s Hospital of Michigan Society of Pediatric Nurses Canton, MI

Marlene Walden, PhD, FAAN Baylor College of Medicine - Neonatology Houston, TX

Joetta Wallace, MSN, RN, FNPC, CPON Program Coordinator Millers Children Hospital Long Beach, CA

Karla Wilson, RN, MSN, FNP, CPON City of Hope NP, Outcomes Research Program Duarte, CA


Special Recognition/Acknowledgements: The Hospice of the Florida Suncoast (Kathleen A. Egan-City, MA, BSN, RN, CHPN and Karen Lo, RN, MS, CRNH) for granting permission to ELNEC trainers for the use of materials used throughout the ELNEC syllabus. Connie Rose, graphic illustrator and painter, designed the illustrations for ELNEC-Pediatric Palliative Care (PPC). These drawings illustrate messages from families of dying children regarding pain, quality of life, and suffering. Permission has been granted to ELNEC-PPC trainers to use these illustrations/drawings for ELNEC-PPC training courses. Louise Dellefratte, RN, MSN, Hasbro Children’s Hospital, one of the 20 palliative care experts who attended the June 2002 pilot and was instrumental to the contribution of this syllabus, died early 2003 from leukemia. Association of Pediatric Hematology/Oncology Nurses (APHON) for granting permission to ELNEC for the use of photographs used in Module 3: Communication.

Tab 1Intro

1

Module 1:Introduction to Pediatric Palliative Care





Pediatric Health Care

n Late 1800'sn Early to mid-1900'sn History of pediatricsn Patient Protection & Affordable

Care Acts, 2010

Child Health Sub-populations

Population of Children Under 18

Children with Special Health

Care Needs

Children with Complex

Chronic Conditions

ChildDeaths

10,743,211 – 16,528,017Bethell et al., 2008

73,847,282US Census Bureau, 2011

644,593 – 1,652,802Bramlett et al., 2009

18,989 Neonatal, 9538 Infant24,519 ages 1-19 (~12,260 due to CCC)National Vital Statistics ReportMatthews & MacDorman, 2012

2


Pediatric Death

n Death in developing countriesn Death in the United States


Disease/Dying Trajectories

n Sudden, unexpected deathn Death from potentially curable

diseasen Death from lethal congenital anomalyn Death from progressive conditions

with intermittent crises


Site of Pediatric Death

n Institutionsn Intensive care unitsn Home care

3


Death and Dying Disparities

n Child perspectiven Family perspectiven Sibling perspectiven Grandparents perspectiven Community perspectiven Schools


Philosophy and Principles of Hospice

n Hospice‒ Definition‒ History


Hospice Eligibility

n Medicare Hospice Benefitn Medicaid Hospice Benefitn Not all hospice programs will

care for childrenn Palliative/hospice care: changing

the model

4


Disease-Modifying Treatment

Hospice Care

Bereavement Support

Palliative Care

Terminal Phase of Illness

Death

Palliative Care


Philosophy and Goals of Hospice and Palliative Care

n Philosophy of care

n Goals of care


Principles of Hospice & Palliative Care for Children

n Precepts of Palliative Care for Children

n Child and family as unit of care with attention to caregiver support

n Adolescents and young adults have distinctive needs

n Attention to physical, psychological, social, and spiritual needs

5


Principles of Hospice and Palliative Care (cont.)

n Interdisciplinary team approach


Principles of Hospice and Palliative Care (cont.)

n Education and support of child and family

n Extends across illnesses and settings

n Bereavement support


Models of Pediatric Palliative and/or Hospice Care

n Hospital-based programsn Free-standing facilityn Hospice-based programsn Community agency or long-term

care facilityFriebert, 2009

6


Massachusetts Pediatric Palliative Care Network: Implementation of State-Funded Program

n Consult servicesn Decreased costn 100% of deaths occurred at

family’s requested location n Median length of stay on service

= 233 days Bona et al., 2011


Development Issues in Pediatric Palliative Care

n Comprehensionn Communicationn Fearsn Development theories & toolsn Child’s need to protect family


Stages of Development

n Infancyn Toddlern Preschool Agen School Agen Adolescence

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Barriers to Quality Care at the End of Life

n Uncertainty of prognosisn Overtreatmentn Limit of therapyn Insensitivities to cultural concernsn Communication breakdownn Other Limitations:

‒ Financial‒ Geographical


Barriers to Quality Care at the End of Life (cont.)

n Lack of adequate training of professionals

n Delayed access to hospice/palliative care‒ Death denial


What’s the Latest on Adult Survivors of Childhood Cancers

n Would they be candidates for future palliative care?

n Continued life-long surveillance is vitaln Most common health issues observed

‒ Pulmonary and cardiac effects of treatment‒ Endocrine or reproductive

disorders/dysfunction‒ Fear of recurrence

8


Nurse's Role in Pediatric Palliative Care

n Anticipatingn Preventingn Treatingn Promoting

n Advocating


Nurses Role in Pediatric Palliative Care (cont.)

n The importance of presencen Maintaining a realistic

perspective

n Nurses as the safety net


Hope within Pediatric Palliative Care

n Meaning of hopen Hope vs. despairn Role of hope

9


Model of Quality of Lifen Physical

Well-Beingn Psychological

Well-Beingn Social Well-Beingn Spiritual

Well-Beinghttp://prc.coh.org

PhysicalFunctional AbilityStrength/Fatigue

Sleep & RestNauseaAppetite

ConstipationPain

PsychologicalAnxiety

DepressionEnjoyment/Leisure

Pain DistressHappiness

FearCognition/Attention

Quality of Life

SocialFinancial BurdenCaregiver Burden

Roles & RelationshipsAffection/Sexual Function

Appearance

SpiritualHope

SufferingMeaning of Pain

ReligiosityTranscendence

http://prc.coh.org


10


Sufferingn State of severe distress that

threatens intactness of the person

n Failure to respond to needs intensifies suffering

n Depth of suffering

Ferrell & Coyle, 2008


Neonatal Suffering

n Assess the family unit for suffering (including siblings)

AAP, 2006


11


Tab 2Perinatal

1

Module 2:Perinatal and Neonatal Palliative Care





Perinatal and Neonatal Palliative Care

n Comprehensive care in a variety of settings

n Best Practice Models of perinatal and neonatal programs


History of Neonatal Intensive Care

n 1950’’s - 1960’’s: NICU development

n Paternalism in decision-making n 1973: Duff & Campbelln 1982: Influence of Baby Doe

Case

2


Awareness of Perinatal and Neonatal Palliative Care

n Advanced testing and technology

n Increased awareness n History


Standards of Professional Practice

n NANN - National Association of Neonatal Nurses

n AAP - American Academy of Pediatricsn NHPCO – National Hospice and Palliative

Care Organizationn PLIDA- Pregnancy, Loss and Infant Death

Alliance


Epidemiologyn In 2010, 24,586 deaths occurred in

children under the age of 1 yearn Infant mortality rate 6.15 per 1,000 live

birthsn Neonatal mortality rate 4.05 per 1,000

live births (16,188 deaths)n Congenital malformations account for

20% of deathsMurphy et al., 2013

3


Perinatal Hospice and Palliative Care

n Definitionn Duality issuen Goalsn Interdisciplinary team

approachn Transition


Types of Perinatal Loss

n Ectopic pregnancyn Spontaneous

abortion/miscarriagen Stillbirthn Neonatal death n Life-limiting conditions

Callister, 2006


Implementing Perinatal Palliative Care Strategies

n Stakeholdersn Establish an interdisciplinary team of

inpatient and community-based members

n Develop a process supported by education, policies,and procedures

n Continuity and support servicesn Community

4


Challenges in Perinatal Palliative Care

n Environment of caren Beliefs of staff/providersn Family expectationsn Society expectationsn Dilemma n Challenges/insurance


Strategies to Overcome Challenges to Perinatal Palliative Care

n Staff education n Access to supportn Environment of caren Parent education


Perinatal Communication: What Parents Want and Planning

n Preparation n Continuityn Supportn Respectn Create environmentn Open dialoguen Education

5


Support During the Pregnancy

n Special accommodationsn Formation of the parent-child

bondn Spiritual ritualsn Communicationn Identifying resources


Intrapartum Care Planning

n Birth Plann Comfort caren Interdisciplinary team meeting


After the Infant’’s Death

n Diagnostic testingn Memory-makingn Lactation

6


Unique Characteristics of Perinatal Bereavement

n Problematic social emotionsn Isolation and abandonmentn Disenfranchised griefn Attachment syndromen Subsequent pregnancies n Death of multiples


Neonatal Palliative Care

n Newborns who should receive palliative care:‒Newborns at threshold of viability‒Newborns with complex or multiple

congenital anomalies ‒Newborns not responding to

intensive care intervention


Unique Features of Neonatal Palliative Care

n Extremely long hospitalizationsn Parent medical record

7


Communication: What Parents Want In The NICU

n Inclusionn Concrete evidencen Respectn Privacy

Eden & Callister, 2010


Communication Strategies in the NICU

n Convey empathyn Speak directlyn Focus on compassion and prevention of

sufferingn Wait quietlyn Review the goalsn Guide parents through the processn Address spirituality

Van McCrary et al., 2014


Location of Death for the Neonate

n Hospital n Homen Encourage parents to ““parent’’

their infant

Toce et al., 2012

8


Ethical Issues in Neonatal Palliative Care

n Decision-makingn Families demand ““inappropriate

care””n Futilityn Withdrawing/ withholding

treatment


Resolving Ethical Dilemmas

n Non-judgmentaln Communicationn Educationn Ethical consultation


Nutrition & Hydration

n Withdrawing vs. withholding nutrition

Larcher, 2013

9


Withdrawal of Mechanical Ventilation: Preparation

n Ordersn Educationn Contingency plansn Autopsy and organ/tissue donationn Medication


Withdrawal of Mechanical Ventilation: Process

n Environmentn Adequate sedation/ pain and

symptom management n After death

Munson, 2007


When Dying Is Prolonged: Caring for the Neonate Beyond the First Few Hours

n What to don What to sayn Preparing family for

alternatives

10


““Rights of Parents””


Experience with the Dying Infant

n Stressorsn Coping skillsn Education and training

Kain, 2006; Kain et al., 2009; Vachon et al., 2015


Experience with the Dying Infant (cont.)

n Moral distressn Conscientious objection to

ordersCatlin et al., 2008

11


Tab 3Comm

1

Module 3:Communication





The Power of Words

Words are better and worse than thoughts, they express them and add to them; they give them power for good or evil; they start them on an endless flight, for instruction and comfort and blessing, or for injury and sorrow and ruin.”

Tyron Edwards (1809-1894)


Myths of Communication

n Communication is deliberate.n Words mean the same to BOTH the

speaker and listener.n Verbal communication is primary.n Communication is one way.n Can’t give too much information.n Silence should always be filled.

2


Why/How is CommunicationImportant?

§ Imparting necessary information for informed decision-making

§ Requires interdisciplinary collaboration

§ Dispels pre-conceived notions/myths


Tasks of Communication

n Interpersonal relationship-building‒Mutual respect‒Trust‒Empathy

n Information exchangen Collaborative decision-making

Hinds et al., 2015


Methods of Communication

n Verbaln Nonverbaln Writtenn Play

3


Interpersonal Skills for Good Communication

n Listeningn Clear, timely, relevant informationn Shared goal-setting/decision-makingn Conflict resolution skillsn Sensitivityn Personal awarenessn Age appropriate communication


Listening

n Occurs at 5 levels ‒Hearing ‒Understanding ‒Retaining information‒Analyzing‒Actively empathizing


Attentive Listening

n Encourage child/family members to talk

n Silencen Acknowledge

feelingsCruzer & Hancock, 2012; Jones et al., 2014

4


Family Factors Influencing Communication

§ Child/Family Unit‒Family systems‒Levels of comprehension‒ Interpretation of information‒Existing coping skills‒Need for hope

Hatano et al., 2011; Hill et al., 2013


Family Factors Influencing Communication (cont.)

n Siblings‒Anxiety‒Loss‒Guilt/shame/blame‒Plan of care for siblings

Limbo & Davies, 2015; Malone & Price, 2012



n Financial/educationaln Physical

limitations/environment/ sleep deprivation

n Language/communication ability

5



n Coping with loss‒Family dynamics‒Denial‒“Hiding” information/feelings to

protect family members‒Spirituality ‒Anticipatory grieving


Healthcare Professionals’ Communication Barriers

§ Fear § Spiritual concerns§ Personal experiences § Ethical issues/concerns

Boyd et al., 2011; Dahlin & Wittenberg, 2015


How to Resolve Conflict

n Take a step backn Identify your own emotionsn Define the conflictn Obtain agreementn Talk about it

Dahlin & Wittenberg, 2015; Jeffrey, 2010

1


Section IIWhat/How to Communicate

n Determine how much child/family want to know

n Assess family’s preferred style of communicating

n Establish an appropriate atmosphere

n Utilize developmentally appropriate language


Mind the Details

n Walk into the roomn Sit downn Provide tissuesn Allow timen Provide contact informationn Plan follow-up


Remember….It is often the small things we do that makes someone feel as if we truly care.

2


Child/Family Expectationsof Healthcare Provider

n Be honestn Non-abandonmentn Elicit values and goalsn Help explore realistic optionsn Team communication/consistencyn Take time to listen

Hinds & Kelly, 2010


Communicating With Child/Family

n What is bad news?

n Use multi-disciplinary team

n Clarify goalsn Communication

is a processPucky & Bush, 2010


Talking With Children

n Is the child willing and physically able to talk?

n What does the child want to talk about?

3


Helpful Tips for Talking with Children

n Child life specialistn Appropriate language for developmental agen Begin with non-threatening topicn Listen actively/observe non-verbalsn Ask child what he/she knowsn Give valid choicesn Respect opinionsn Allow time to plan


Delivering Difficult Newsn Steps:‒ Find out what they know/want to know‒ Plan what to say/use simple language‒ Establish rapport‒ Be sensitive/respectful‒ Control the environment‒ Set aside time/turn off pagers‒ Acknowledge and reflect on your own

discomfort Wright et al., 2011


n The Fall of Freddie the Leafn Gentle Willow: A Story for Children about

Dyingn Goodbye Mousien When Someone Very Special Diesn The Invisible Stringn I’ll Miss You, Mr. Hopper (Sesame Street)

Children’s Books to Facilitate Talking about Death

4


Clinicians’ Role in Framing Conversations

n Anticipate difficult questions and statements

n Familiarize yourself with natural responses to devastating news


LANGUAGEUNCLEAR/DISTRESSFUL HELPFUL

It’s time to pull back. Let’s think about/discuss discontinuing treatments which are not providing benefit or causing more symptoms.

There is nothing more we can do. We may consider changing the goals of care. Let’s review the goals of care to see if any of them have changed.

A miracle may turn things around. In my experience, I have not seen a child in this situation survive.


LANGUAGEHELPFUL PHRASES AVOID

May I just sit here with you? It was a blessing…Is there anyone I can call for you?

You have other children to think about.

What might be helpful to you at this time?

I know how you feel.

Would you like me to talk with your other family members, or be there with you when you talk with them?

This will make you a better/stronger person.

5


Communicating With Patient/Family

n Never say:‒“There is nothing more we can do.”

n Instead say:‒“We can’t cure your child, but we can

provide care to make him/her as comfortable as possible until death.”


Listen With Parents’ Ears

WHAT HCP SAYS WHAT PARENT HEARSHis creatinine is better. He will get well.She is stable today. She is getting better.We have an experimental treatment.

This new therapy will cure my child.

Do you want us to do CPR? You think CPR will help.

Do you want us to “do everything” for your child?

Doing everything means you think my child will survive and get well.


“Doing Everything”

n Means providing comprehensive care‒Pain management‒Symptom management‒Addressing physical/spiritual needs

Durall et al., 2012

Tab 4Ethical

1

Module 4:Ethical/Legal Issues in Pediatric Palliative Care

End-of-Life Nursing Education Consortium



CENLE

CENLE

Pediatric Palliative CareCENLE

Ethics in Pediatric Palliative Care

n What ought to ben Determining the best course of

actionn Ethical issues are inevitablen Societal changes


Nurse’s Role in Addressing Ethical Issues

n Promoting family-centered caren Respecting preferencesn Role models of clinical

proficiency, integrity, and compassion

n Balancing competing objectives

6


Semantics

n Use the “D” (death/die) word‒Parents need concrete

terms‒Eliminate

vague/confusing messages


DNR/DNAR vs. AND vs. POLST

n DNR means:‒“DO NOT RESUSCITATE”

n DNAR means:‒DO NOT ATTEMPT RESUSCITATION

n AND means: ‒“ALLOW NATURAL DEATH”

n POLST/MOLST


Summary

n Communication is complexn Requires repetitionn Child/family must be involvedn “Speak” the family’s languagen Requires ongoing assessment of

communication effectiveness

2


Standards of Professional Nursing Practice

n ANA Code of Ethics

n Nurse Practice Act

n Standards for professional organizations


Issues of Decision-Making and Communication

n Capacityn Consentn Assentn Confidentiality


3


Issues of Decision-Making and Communication (cont.)

n Disclosure‒Previous belief in not discussing

diagnosis‒Explore reasons for not disclosing‒The CHILD’S right not to know

Hinds et al., 2015


Ethical Dilemmas in Palliative Care

n Prolongation of life‒Curative intent‒Acute therapeutic care‒Life sustaining treatments (LST)

Jonsen et al., 2010; Prince-Paul & Daly, 2015


Ethical Dilemmas in Palliative Care (cont.)

n Withholding/withdrawing of medical interventions‒Balancing benefits and burdens‒Withdrawal of treatment is not

withdrawal of care

4



n Withholding/withdrawing of medical interventions (cont.)



n Do Not Resuscitate (DNR)-considered obsolete

n Do Not Attempt Resuscitation (DNAR)

n Allow Natural Death (AND)n Medical Futility



n Assisted deathn Euthanasia

5


Principle of Double Effect

n An ethically permissible effect can be allowed, even if the ethically undesirable one will inevitably follow.

Jonsen et al., 2010


Issues of Justice in Palliative Care

n Provision of quality palliative care

n Costs of palliative care


Research In Pediatric Care

n Is research appropriate?‒ Informed consent

n National Commission for Protection of Human Subjects

6


Facilitating Ethical and Legal Practice

The 4 Box Method

Quality of Life

Patient Preferences

Medical Indications

Contextual Features

Jonsen et al., 2010


Medical Indications

n Indications for and against the intervention

n Reflect the goals of care

n Common ethical dilemmas


Child and Family Preferences

n Principle of respect for persons‒Autonomy, privacy, veracity

n Assess child/family understanding

7


Advance Care Planning

n Process of decision-making and communicating about goals of care

n Nurse’s role in assessing and interpreting wishes for care

n POLSTHinds et al., 2015


Advance Care Planning (cont.)

n Decreases chance of conflictn An ongoing, dynamic processn Cultural, ethnic, and age-related

differences



n Advance Directives—Written method for child and family to plan and communicate choices

n Less common in pediatricsn State statutes differn My Wishes™/Voicing My Choice ™

8



n Nursesn Child Life Specialistsn Social Workersn Hospices


Authority of Parents

n Children are deemed legally capable of consent at age 18

n Challenge of determining relevance and weight of parental and patient preferences

Jonsen et al., 2010


Standard for Parental Preferences

n Parents as moral and legal agents

n Parents’ evaluation of treatment efficacy or futility

n Instances of parent and physician conflict

Jonsen et al., 2010

9


Quality of Life (QOL)

n Evaluation of prior QOL

n Expected QOL with and without treatment

n Common ethical dilemmas addressing QOL

Jonsen et al., 2010


Contextual Features

n Social, legal, economic and institutional circumstances

n Common ethical dilemmas

Jonsen et al., 2010


Managing Disagreement

n Parent-child conflictn Minorsn Legal issues, etc.

10


Managing Disagreement (cont.)

n Parent-parent conflict

n Parent-physician conflict


Parental Insistence on Treatment


Organizational Ethics & Legal Practices

n Organizational ethics

n Ethics committees and consultation‒Education‒Policy development‒Case consultation

11


Conclusion

n Engage in a process of ethical discernment

n Apply principles of ethics n Use ethical process to seek

balance in decision-makingn Advocate for children and families

Tab 5Culture

1

Module 5:Cultural and Spiritual Considerations in Pediatric Palliative Care





Culture

n Security, integrity, belongingn Child’s experiencen Social beliefsn Ethnic identity/evolving

Mazanec & Panke, 2015


End-of-Life Care

n Has its own cultural considerationsn Examine personal cultural beliefs,

values, and principlesn Never assume

2


Components of Culture

n Ethnic identityn Gendern Age



Components of Culture (cont.)

n Differing abilitiesn Sexual orientationn Religion and spirituality



n Financial statusn Place of residencyn Child’s role

3



n Education leveln Social consideration



Cultural Sensitivityn Non-judgmental approachn Cross-cultural communication/

cultural assessmentn Interdisciplinary approachn Spirituality and healing

Kagawa-Singer, 2011; Mazanec & Panke, 2015

4


Components of Cultural Assessment

n Child/adolescent/familyn Self-identification‒Birthplace‒Ethnic identity‒Decision-making‒Language and communication



Components of Cultural Assessment (cont.)

n Community‒Religion‒Spirituality/rituals‒Food preferences/prohibitions‒Economic situation/support system‒Health beliefs regarding death, grief, pain


Components of Cultural Assessment (cont.)

n Nurse and Interdisciplinary Team‒Self assessment‒Cultural beliefs of co-workers‒Cultural competence

5


Cultural Considerations of Communication

n Comfort leveln Use of interpretersn Conversational stylen Effective communication


Cultural Considerations of Communication (cont.)

n Personal spacen Eye contact


Cultural Considerations of Communication (cont.)

n Touchn Time orientationn View of healthcare professionalsn Learning styles

6


Role of the Family

n Who makes decisions?n Who is included in discussions?n Is full disclosure acceptable?



Conclusion

n Many dimensions of culturen Major influence on end-of-life caren Self-assessment of culturen Interdisciplinary care facilitates

culturally sensitive care

Tab 6Pain

1

Module 6:Pain Management





Section IPain Defined

n Pain is a subjective response

n Pain in childhood can be acute, chronic, or a combination of both

n Children's pain is influenced by many factors


Scope of the Problemn Children’s pain experience

‒ 25-46% experience some level of pain <3 months duration

‒ Up to 30% experience chronic or recurrent pain severe enough to interfere with daily functioning

n Effect of pain on quality of life

2


Populations at riskn Chronic conditionsn Trauma/injuryn Neurological impairmentn Neonates/infantsn Non-English speakingn Cultural, gender stereotyping


Barriers to Pain Reliefn Healthcare professionals

n Healthcare system

n Related to parents/children


Myths Related to Pain and Pain Management in Children

n Risk of respiratory depressionn Addictionn Child that is sleeping/or playing

does not have painn Presence of pain indicates

worsening of disease or approaching death

3


Facts About Childhood Pain

n Opioid addictions are rare.n Repeated exposure to painful

procedures leads to increased anxiety and perception of pain.

n Studies have shown that children as young as 3 years old can use pain scales.

Carter et al., 2011; Collins et al., 2011; Goldman et al., 2012; Hockenberry & Wilson, 2011


Myths Related to Neonatal/Infant Pain

n Incapable of feeling painn Immature nervous systemn Incomplete myelinizationn No memoryn Objective assessment

impossiblen Neonates cannot

communicate painn Analgesics unsafe


Facts About Neonatal/Infant Painn Pain perception occurs early in

life

n Neonates exhibit physiologic and behavioral cues

n No risk of addiction‒ Tolerance & physical dependence can

occur

4


Impact of Pain n Research asked ‘What is it like to have a child

with pain?’‒ Unendurable‒ Sense of helplessness‒ Sense of total commitment‒ Unprepared/unknowledgeable‒ Horrible/frightening‒ No pain in heaven

Dussel et al., 2010


Special Populations n Injury/trauma‒ ER ‒ PICU

§ Pain management affected by:‒ Emergent/critical nature of illness with

primary focus on stabilization & diagnosis‒Child/family stress exacerbating pain &

anxiety


Special Populationsn Cancer pain‒Disease, treatment, & procedure related

n Chronic non-malignant pain‒ Sickle cell disease, diabetes, rheumatoid

arthritis, HIV, cystic fibrosis, neurological degenerative diseases

5


Special Populations

n Sickle cell‒Numerous complications of SCD

result in pain‒Vaso-occlusive crisis, priapism,

dactylitis, splenic sequestration, spinal cord compression, and avascular necrosis of joints


Special Populations

n Musculoskeletal/rheumatic‒Juvenile Primary Fibromyalgia‒Juvenile Idiopathic Arthritis‒Complex Regional Pain Syndrome


Special Populations

n Neurocognitive impairment‒ Pain experience‒ Pain indicators‒ Effect of uncontrolled pain‒AssessmentØKnowing childØRecognizing patternsØIntersubjective process with HCP

1


Section IIMultidimensional Assessment

n Self-report/parent-reportn Intensityn Qualityn Pattern n Aggravating/alleviating factorsn Medication historyn Meaning


Assessmentn Types of assessment‒Self-report‒Behavioral‒Physiologic‒Proxy report

n Use of scales


Reassessment of Painn Changes in painn Changes in analgesic regimenn Assess consistently & at

appropriate time intervals post intervention

n Use of diaries

2


Neurologically-Impairedn Assessment‒Child may have limited self-report‒Parent interview‒Pain behaviors‒ InterventionsØNon-pharmacologicalØPharmacological

Oakes, 2011; Pasero & McCaffery, 2011; Walco & Goldschneider, 2008


Neonatal/Infant PainAssessment Tools

n CRIES Neonatal Postoperative Pain Measurement Score Krechel & Bildner, 1995

n Premature Infant Pain Profile (PIPP) Stevens et al., 1996

n Neonatal Infant Pain Scale (NIPS)Lawrence et al., 1993

n Neonatal Pain Agitation and Sedation Scale (NPASS) Hummel et al., 2008


Pain Assessment Tools

n Pre-verbal / nonverbal (examples)‒FLACC‒Pain Observation Scale‒Modified Objective Pain Score‒Non Communicating Children's Pain

Checklist (NCCPC)

3


Self-Report Pain Intensity Scales

n FACES Pain Scale-Revised (FPS-R)

n OUCHER

n VAS (Visual Analog Scale)

n Verbal Report Scale


Tools for Initial Overall Pain Assessment

n Initial Pain Assessment Tooln Brief Pain Inventoryn Parent/Child Total Quality Pain

Instrumentsn Neuropathy Pain Scalen Adolescent Pediatric Pain Tool


Communicating Assessment

n Document clearly in chart‒Assessment‒ Intervention‒Re-assessment

n Establish pain care plans

1


Section IIIPain Physiology

Pain is a complex physiologic process involving cellular damage and chemical mediation resulting in an individual affective response.


Types of PainNociceptive Pain

Ø Normal pain transmission§ Occurs due to tissue

damage or inflammation§ Serves to warn & protect

individuals from further injury

§ Will typically respond to NSAIDs & opioids

Neuropathic PainØ Abnormal pain

transmission§ May occur in the absence

of tissue damage or inflammation

§ Believed to serve no purpose; does not serve to warn against further injury

§ Best treated with coanalgesics (i.e., anticonvulsants & tricyclic antidepressants)


Types of Pain)n Nociceptive Pain‒ Somatic

Ø Superficial cutaneous/deeper musculoskeletal structures

Ø Well localizedØ Sharp, aching, throbbingØ Examples: surgical incisions,

mucositis, metastatic lesions‒ Visceral

Ø Infiltration, distension, compression/distortion of organs found in thorax, abdomen, pelvis

Ø Difficult to localizeØ Dull, cramping

n Neuropathic Pain‒ Centrally generated

Ø Deafferentation painØ Sympathetic pain

‒ Peripherally mediatedØ PolyneuropathiesØ Mononeuropathies

‒ Sharp, shooting, electric

2


Concept of Total Painn Physical Pain

‒ Pain due to disease location‒ Other symptoms (ie,

nausea)‒ Physical decline & fatigue

n Spiritual pain‒ Religious/faith, anger at

God‒ Meaning of life & illness‒ Why me?‒ Why my child?

n Psychological Pain‒ Grief, depression‒ Anxiety, anger‒ Change in

appearance

n Social‒ Relationships with

family/friends‒ Role in the family‒ Financial problems


Tolerancen ââ effect of a medication over time,

requiring áá dose to achieve same level of efficacy

n Should consider differential diagnosisn Tolerance ≠ addictionn Easily managed by áá dose or ââ interval

between dosingn Should not withhold opioid


Physiological Dependencen Development of withdrawal

syndrome after:‒Abrupt discontinuation of therapy‒Substantial dose reduction‒Administration of antagonist medication (naloxone)

3


Psychological Dependence (Addiction)

n Pattern of compulsive drug use characterized by continued craving for an opioid and the need to use the opioid for effects other than pain relief

n Three distinguishing characteristics‒Continued cravings with/without pain‒ Illegal and anti-social behavior in order to

obtain the drug‒Chronic, relapsing condition APS, 2009


Pain Managementn Severe pain should be seen as a

medical emergencyn Rapid assessment and treatment of

pain is imperative n Close collaboration with

physicians/APNs, pharmacists, other nurses, and family is essential to optimum use of analgesic treatments.


WHO Analgesic Stepladder

4


Around the Clock Dosing

n Opioid medications should be given on scheduled basis‒Provide adequate PRN doses for

breakthrough pain‒Maintain stable analgesic blood levels‒Designed to control baseline pain


Stay Ahead of Painn Individualize to the child based on their

level of pain, prior experience with opioids, and desired activity level

n Frequently assess pain level and adjust treatment plan as necessary

n In pain crisis - rapid titration to comfort is imperative


Least Traumatic Route of Administration

n Oral is not always the least traumatic means, particularly in toddler/early childhood‒ Flavor of medications present a challenge‒ Verify ability to crush oral medications with

pharmacyn Avoid rectaln No ‘SHOTS’

5


Routesn Oral/Transmucosal‒Long-acting preps‒Breakthrough IR preps

n Transdermal‒Limited use in escalating pain‒Treat with additional analgesics until

peak onset is reached with initial placement


Routes (cont.)

n Topical

n Intravenous/Subcutaneous

n Intraspinal/epidural


Opioids in Neonatal Population

n Reduce clearance of majority of opioids

n Prolonged half-lifen Tachyphylaxis

1


Section IVAnalgesics

n NSAIDs‾ Can be used in mild,

moderate, acute, or chronic pain alone

‾ Use in severe pain in combination with opioid + adjuvant

n Useful in treatment of bone pain

Acetaminophen/NSAIDsn Acetaminophen

‾ Useful for mild pain, anti-inflammatory action

‾ Works synergistically with morphine


Analgesicsn Management of NSAID Side Effects‒Gastric irritation, heart burn, ulceration,

and bleeding‒Use gastroprotective for prolonged use‒Effect on platelet aggregation: short-

acting, reversible‒Renal effects: rare, insufficiency and

nephrotoxicity can occur with prolonged high doses


Analgesicsn Combination Analgesics (weak opioids)‒Codeine

ØUse in mild pain only, limited use in severe painØMaximum recommended dose (60mg) produces

analgesia equal to 600mg aspirinØCombination product with acetaminophen

‒HydrocodoneØOnly available in combination with

acetaminophen, aspirin, or ibuprophenØNot appropriate for moderate to severe pain

2


Analgesics

n Opioids‒Morphine is gold standardØVariety of routes, formulationsØLarge body of researchØUsed for moderate to severe/intractable pain

‒ FentanylØUsed in anesthesia, procedural sedationØAcute moderate to severe painØPatch has been found useful in some cancer

and chronic non-malignant pain


Analgesicsn Opioids ‒ Hydromorphone

ØMore potent than morphineØGood alternative if morphine or oxycodone

cannot be used.‒ Methadone

ØGaining favor as analgesic in chronic and neuropathic pain

ØLong half-life; therefore, longer time to steady state

ØNot useful in breakthrough pain


Adjuvants for Neuropathic Pain

n Co-analgesics - medications that are used in combination with opioids to enhance analgesia or treat specific types of pain‒ Antidepressants - amitriptyline, nortriptyline‒ Anticonvulsants – gabapentin, tegretol

3


Adjuvants for Neuropathic & General Pain

§ Anesthetics - mexilletine, lidocaine, ketamine, propofol

§ Corticosteroids – dexamethasone

§ Anxiolytics - lorazapam, diazapam, midazolam

§ Barbiturates - phenobarbitol, pentobarbitol


Analgesic Side Effects

n Constipation – Prevention is KEY!‒Miralax, senna and ducosate sodium,

casanthranol and ducosate sodium, bisacodyl, mag citrate

n Sedation – Tolerance within a few days‒Precedes respiratory suppression; use

monitor


Analgesic Side Effects (cont.)

n Urinary retention – oxybutyninn Nausea/vomiting – zofran,

promethazine hydroxyzinen Pruritus - diphenhydramine,

hydroxyzine

4


Respiratory Suppression

n EXCEEDINGLY RAREn Decreased depth and rate of

respiration, increased sedationn Use reversal drugs with caution


Respiratory Suppression (cont.)

n Respiratory Suppression Protocol‒ If sedated and unresponsive to stimulation:

ØAdd O2 and give Naloxone—CAUTIOUSLY!ØFor children >40kg

v Dilute 0.4mg vial in 10cc NSv give 0.5 ml q 2min IV or SC until alert and RR returned to

baselineØFor children <40kg

v Dilute 0.1mg in 10ml to make 10mcg/ml solutionv Administer 0.5mcg/kg IV or SC q 2 minutes until alert and RR

returned to baseline‒ If pt does not respond – look for other causes


Titrationn Patients with new onset or escalating pain‒Conduct thorough pain assessment‒ Provide PRN dose of medication‒Reassess in 15 min if IV/SC, 30 if PO‒ If no relief, give another PRN dose‒Repeat until pain relieved ‒Calculate dose needed for PCA/sustained prep

n Notify physician/APN if requiring frequent bolus doses or change in quality of pain

5


Titration

n Changing route‒Calculate total amount of meds in past 24

hours‒Make appropriate equianalgesic conversions‒ If comfortable at current dose, continue at

same equianalgesic dose.‒ If pain is not controlled on current dose,

increase equianalgesic dose by 25% to 50%


Tapering Opioidsn Begin by giving half the previous day’s

dose x 2 daysn Reduce doses by 25% daily, until off

medicationn Monitor for s/s of withdrawal‒Runny/stuffy nose, diarrhea, abdominal

cramping, nausea/vomiting‒Return to dose prior to onset of symptoms

n Monitor for return of pain


Pharmacological Pain Management- Equianalgesia

n The dose of one analgesic medication that is equivalent in pain relieving potential to another analgesic medication.

n Equianalgesia must be considered when switching from one opioid to another, or from one route to another

n Failing to consider equianalgesia is a leading cause of inconsistent pain control

6


Equianalgesia

n Based on 10mg parenteral Morphine

IV PO ConversionMorphine 10mg 30mg 3Hydromorphone 1.5mg 7.5mg 5Methadone 10mg 20mg 2


Conversion Problemn Child is currently on a Morphine PCA pump with

basal 25mg IV q 24 and has received five 1mg PRN doses. Convert this to an oral equivalent.‒ Total 24 hr dose = 30 mg (25 + 5)‒ 30mg IV multiplied by conversion of 3 = 90mg PO

n Convert the Oral Morphine to Oral Dilaudid:‒ Oral Morphine 90mg/24 hrs. ‒ 30 mg PO Morphine= 7.5 mg Hydromorphone(30/7.5 = 4)‒ 90mg Morphine = 22.5 mg Hydromorphone


Opioid Rotationn Used when titration of opioid is

ineffective or causing intolerable side-effects

n No clear guidelines for when to rotate due to ineffective pain control

n Cross-tolerance between opioids not always complete‒Use equianalgesic conversion, decrease

dose by 25% to 50%

1


Section VProcedural Pain

n Causes‒ Placement of IV lines, lumbar punctures,

bone marrow aspirations, finger/heel sticks, placement of drainage tubes, venipuncture for blood tests and SC/IM injections, catheterization

n Goals‒Minimize pain‒Maximize patient cooperation‒Minimize risk


Procedural Pain Management

n Topical anestheticsn Conscious sedationn Unconscious sedation

Kamat et al., 2014


Intractable Pain

n Palliative chemotherapyn Radiation therapyn Therapeutic nerve blocksn Epidural/intrathecal infusions

2


Non-Pharmacologic Techniques

n Parental presencen Therapies for neonates


Non-Pharmacological Pain Management

n Visualization/guided imagery

n Deep breathingn Massagen Heat/coldn Positioningn Physical therapyn Meditationn Play therapy

n Reikin Hypnosisn Aromatherapyn Music n Hydrotherapy

‒ Consult child life, social work, rehab for assistance


Pain in Dying Childrenn 90% of children dying of cancer

experience pain or other symptoms

n Nearly 50% had pain relief n Inadequate pain relief hastens

death

Wolfe et al., 2008

3


Pain versus Suffering

n Influenced by existential distress, fear of dying, and grief

n Affects QOL dimensions


Pain at the End-of-Life

n Practical treatments in the homen Dosage of opioidsn Renal functionn Accumulation of metabolites


Key Points in Neonatal Palliative Care for Pain Management

n Plan the environmentn Introduce model to parentsn Family care including cultural

contextn Follow-up caren Consistent communication

Moro et al., 2011

4


Principle of Double Effect

n Intent is to relieve pain, NOT to cause harm

n Yet, inadvertently pain relief may have other consequences


Palliative Sedation

n Communication with family

n Goal of sedation

n Treatment

n Comfort measures


Special Considerations for Home Care

n Referral to home care/hospicen Relationships/communicationn Flexibility and reliabilityn Assess goals of child/family

5


Role of the Nurse in Pain Management

n Identify obstaclesn Best practicesn Advocacyn Education


Patient/Family Educationn Key to effective pain managementn Address fears/misconceptions

‒ Choose words carefullyØOpioid (not narcotic), Medication (not drugs)

n Teaching points‒ Physiology of pain‒ Pain assessment and use of scale‒ How pain medications work‒ Potential side-effects and management‒ When to call doctor/nurse


Summaryn Pain must be assessed and

managed consistentlyn Interdisciplinary managementn Golden rules‒"If it would hurt you, it hurts them"‒Approach the child with the same

respect you would an adult‒Requires trust and cooperation

6


Tab 7Symptoms

1

Module 7:Symptom Management




CENLE

CENLE


Section IIntroduction

n Children are living longer with complex chronic medical conditions.

n Multiple acute and chronic health crises create significant challenges for the child and family.


Introduction (cont.)

n Symptom management for these children presents a unique challenge to healthcare providers.

n Interdisciplinary family-centered care is an integral part of the symptom management for a chronically ill child.

2


Understanding Family-Centered Care

n Families‒ Illness experience‒QOL and sources of suffering‒Goals of careØCurative/restorativeØLife prolongationØComfort


Understanding Family Centered Care (cont.)

n Parents as experts in their child’s care

n Role of extended family, school, community


Symptoms and Suffering

n Determine priority of symptoms for the child

n Symptoms create suffering and distress

3


Key Nursing Roles

n Assessmentn Child/family advocacyn Pharmacological treatmentsn Non-drug treatmentsn Teachingn Non-judgmental support


Assessment and Management

n Continuous assessmentn Symptom onset, severity &

effect on quality of lifen Diagnostic Testing‒Not ‘if’ but ‘why’


4


Symptomsn Neurologicaln Respiratoryn GI symptomsn Fatiguen Hematologicaln Psychologicaln Spiritual

1


Section IINeurological

n Autonomic dysregulation n Dystoniasn Restlessness/agitation n Seizure


Restlessness/Agitation

n Provide routines, comfort and support

n Decrease stimulationn Pharmacologicn Non-pharmacologic


Seizures

n Causes

n Signs and symptoms

n Treatment

2


Dyspnea

n Definitionn Associated diseases

n Causes


Assessment of Dyspnea

n Assessmentn Treatment‒Pharmacologic‒Non-pharmacologic


Treatment of Dyspnea

n Treating symptoms or underlying cause

n Pharmacologic treatments

3


Treatment of Dyspnean Non-pharmacologic‒Oxygen‒Pursed lip breathing‒Energy conservation‒Fans, elevation‒Counseling‒Other



Terminal Respirations

n Agonal or Cheyne-Stokes breathing

n Use an anti-cholinergic medication for excess secretions

n Provide family support

4


1


Section IIIAnorexia and Cachexia

n Anorexia – loss of appetite, usually with decreased intake

n Cachexia – lack of nutrition and wasting

n Offer favorite foods, but educate families about disease process

n Forcing intake orally or artificially may cause additional suffering


Causes of Anorexia and Cachexia

n Pre-maturityn Disease-related

n Psychological

n Treatment-related


Assessment of Anorexia and Cachexia

n Physical findingsn Impact on function and QOL

n Calorie counts/daily weights

n Laboratory tests

2


Treatment of Anorexia and Cachexia

n Dietary consult/interventionn Medicationsn Parenteral/enteral nutritionn Education (as artificial nutrition

in PC may increase suffering)


Constipation

n Definition n Causesn Prevention is keyn Discussion may be difficult with

child/adolescent


Assessment of Constipation

n Bowel historyn Abdominal assessment

n Rectal assessment

n Medication review

3


Treatment of Constipation

n Medicationsn Dietary/fluids‒Popsicles‒Clear sodas‒Jello

n Other approaches


Overview / Causes of Nausea and Vomiting

n Gastrointestinal causes

n Metabolic causesn CNS causes


Assessment of Nausea and Vomiting

n Clinical/physical examn History

n Lab valuesn BARF scale

n Minimize suffering

4


Pharmacologic Treatment of Nausea and Vomiting

n Anticholinergicsn Antihistaminesn Steroids

n Prokinetic agentsn Other Friedrichsdorf et al., 2011;

Hellsten & Berg, 2015; Johnson et al., 2013; Santucci & Mack, 2007


Non-Drug Treatment of Nausea and Vomiting

n Distractionn Dietary

n Small/slow feeding

1


Section IVFatigue

n Subjective, multidimensional experience of exhaustion

n Commonly associated with many diseases

n Impacts all dimensions of quality of life


Causes of Fatigue

n Disease-related

n Psychological

n Treatment-related


Assessment of Fatigue

n Subjective

n Objective

n Laboratory data

2


Treatment of Fatiguen Pharmacologicn Non-pharmacologic‒Rest‒Energy conservation‒PT/OT

n NeonatesHellsten & Berg, 2015; O’Neil-Page et al., 2015;

Yennurajalingam & Bruera, 2010


Anemia/Bleeding

n Symptomsn Causesn Assessmentn Treatment


Depressionn Manifestations in children may differ

from adultsn Ranges from sadness to suicidaln Chronic and terminally ill children are

at riskn Children tend to react to distress and

emotions of adults closest to them.

3


Causes of Depression

n Disease-relatedn Psychological

n Treatment-related

n Other


Assessment of Depression

n Situational factors

n Presence of risk factorsn Previous psychiatric

history/treatment


Treatment of Depressionn Antidepressantsn Stimulantsn Promote autonomyn Grief/psychiatric

counselingn Draw on strengthsn Therapy

4


Anxiety: Definition/ Assessment

n Definition

n Assessment‒Physical symptoms‒Cognitive symptoms‒Assess for presence of uncontrolled

symptoms/fears


Treatment of Anxiety

n Medicationsn Empathetic listeningn Assurance and support

n Maximize symptom managementn Relaxation/imagery


Conclusion

n Multiple symptoms commonn Coordination of care with

physicians and othersn Use drug and non-drug

treatmentn Child/family teaching and

support

Tab 8Grief

1

Module 8:Loss, Grief, and Bereavement




CENLE

CENLE


Loss, Grief, and Bereavement

n America is a death-denying society

n Affects child, family, healthcare providers, and community

n Grief is an individual process

Bergstraesser et al., 2014


Definitions n Loss is the absence of a possession

or personn Grief is the emotional response to

loss n Mourning is the outward, social

expression of loss n Bereavement includes grief and

mourning n Strongly influenced by culture Corless, 2015;

Limbo & Davies , 2015

2


Models / Theories of Grief

n Stage/phase modelsn Medical modelsn Grief work theoriesn Theories of relationship with the

deceased

Davies et al., 2010; Limbo & Davies, 2015


The Nurse’s Role in Grief and Bereavement

n Acknowledge personal reactionn Assessmentn Utilize interdisciplinary team


Contextual Variables in Bereavement and Grieving

n Circumstance of child’s deathn Griever’s personal history with

bereavementn History and relationship with

childLimbo & Davies, 2015

3


Contextual Variables in Bereavement and Grieving (cont.)

n Personality of grievern Cultural and social

circumstances

Limbo & Davies, 2015


The Grief Processn Begins before deathn Not orderly or predictablen Task-orientedn No one “gets over it”n Grief work leads to living with the

deathn Deaths in the PICU Limbo & Davies, 2015;

Meert et al., 2011; Parkes & Prigerson, 2010


Grief as Relearning the World

n Relearning physical surroundings

n Relearning social surroundingsn Relearning aspects of the selfn Relearning the relationship with

the childLimbo & Davies, 2015

4


Anticipatory Grief

n Definition n Actual or fear of potential loss(es)n Children’s responsesn Interventionn Does not lessen intensity of grief

after death


Perinatal and Neonatal Loss

n Medical managementn Psychological and social caren Disenfranchised griefn Siblings


Circumstances Where Special Services May Be Needed

n Sudden or traumatic deathn Suicide, homiciden Multiple lossesn Unresolved grief from prior

losses

5


Unique Aspects of Grief in Children

n Developmental stagesn Grief in young childrenn Grief in older children

Gibbons, 2009


Effects of Griefn The dying child‒Related to personal awareness‒Range of feelings

ØAngerØAnxietyØSadnessØLonelinessØFear Limbo & Davies, 2015


Effects of Griefn On the familyn The parent(s):‒Relationship is like no other‒Responsible for protecting child‒Mother and father have unique

experiences‒Special at-risk parents


6


Effects of Grief (cont.)

n On the grandparent(s)‒Source of strength‒Grief is two-fold, for

parents and childLimbo & Davies, 2015


Factors Affecting the Grief Process

n Family lifecyclen Role of deceased child in the

familyn Emotional relationship with child



Grief Assessment

n Who: Child, family, significant others

n When: Time of diagnosis –ongoing process

n Identify resources/supportCorless, 2015;


7


Grief Assessment Includes

n Nursing assessmentn Physical assessment of

caregiver(s)n Behaviors of complicated

griefn All family members (parents,

siblings, extended family)Chavon et al., 2015


Grief Assessment (cont.)

n Siblings at-riskn Assess

psycho/physiologic responses

Davies & Limbo, 2010;Davies & Orloff, 2010


Grief Interventions: Familyn Provide presencen Active listening, touch, silence,

reassurancen Identify support systemsn Use bereavement specialists & resourcesn Normalize & individualize the grief processn Actualize the loss & facilitate living

without the deceasedLimbo & Davies, 2015

8


Grief Interventions: Children

n Informationn Address fearsn Listen/reassuren Validate feelingsn Involvement/inclusion/continue

routineLimbo & Davies, 2015


Grief Interventions: Schools

n Preparing studentsn Peer deathn Sibling death and the classroomn Staff support

Golenski, 2009


Grief Interventions: Parents

n Before death‒Communication‒Memories‒Funeral planning


9


Bereavement Interventions: Parents

n Follow-up by HCPs‒Encourage seeing child's doctor‒Follow-up phone calls

n Refer to support groups


Duration of the Grieving Process

n No one can predict durationn Grief work is ongoingn Healing occurs when the pain is

lessn Complicated grief


The Nurse: Death Anxiety, Cumulative Loss, Grief

n Death anxiety n Defenses n Personal death

awareness

Vachon et al., 2015

10


Cumulative Loss

n Succession of losses experienced by nurses

n May not have time to resolve losses before another loss occurs

n Moral distressVachon et al., 2015


Six Stages of Nurse Adaptation

n Intellectualizationn Emotional survivaln Depressionn Emotional arrivaln Deep compassionn The “doer”


Systems of Support

n Balancen Assessing formal/informal

support systemsn Supervisor/instructor support

Vachon et al., 2015

11


Systems of Support

n Spiritual supportn Education in end-of-life caren Self-care activities

Vachon et al., 2015


Conclusionn Nursing care does not end with the

deathn Loss, grief, and bereavement need to

be assessed with ongoing intervention

n Nurses must recognize and respond to their own grief

n Provide interdisciplinary care


Find Own Meaning & Purpose

12


Tab 9Death

1

Module 9:Care at the Time of Death in Pediatric Palliative Care





Pediatric Dying and Death

n How children dien Final hours

Feudtner & Hexem, 2011


Pediatric Death is a Unique Experience

n No typical pediatric deathn Developmental issuesn Family is the unit of caren Interdisciplinary team approach

2


Role of the Nurse in the Final Days

n Advocate

n Educate

n Coachn Interdisciplinary team

collaboration


Role of the Nurse in the Final Days (cont.)

n Be presentn Physical caren Spiritual comfortn Honor culturen Memory-making


The Dying Child

n Awareness of dyingn Disclosuren Communication

3


The Family

n Parents

n Siblings—involve a child life specialist

n Extended family



Site of Death

n Hospitaln Homen Physical environmentn Changes should be avoided

4


Communication in Last Days

n Provide information in simple terms, based on readiness

n Child’s awareness of deathn Presence


Education about Last Hours

n Empowermentn Keep instructions simple;

repetitionn Signs, symptoms of dying

processn Family involvement


The Imminently Dying Child

n Estimating prognosisn Signs/symptoms only a guidelinen Dying process

5


Psychosocial and Spiritual Issues

n Fearn Near death awarenessn Withdrawaln Spiritual care


Family Practice/Ritualn Family may have cultural or

religious practices surrounding death and dying

n Always ask about preferences—don’t assume

n Rituals


Physical Symptomsn Onsetn Confusion, disorientation,

deliriumn Weakness, fatiguen Pain changesn Restlessness and/or terminal

agitation

6


Physical Symptoms (cont.)

n Alertness/sleep changesn Temperature changesn Gastrointestinal changesn Decreased oral intake


Physical Symptoms (cont.)

n Vital sign changesn Breathing pattern changesn Incontinence or urinary retentionn Seizuresn Continued assessment


The Death Vigil

n Family presencen Common fears‒Being alone with the child‒Painful death‒Time of death‒Giving “last dose”

Authers, 2008; Steele & Davies, 2015

7


Death: When the Time Comes

n Signs and symptomsn Parental presence or absencen Death pronouncement


Communicating the Death

n Griefn Interdisciplinary team approach


Death in the NICU

n Communicationn Continuity of caren Withdrawal of interventionsn Family involvement

8



Care Following Death

n Removal of tubes, equipmentn Bathing and dressing the child’s

bodyn Encourage family participationn Respect cultural preferences


Care Following Death (cont.)

n Compassionate/sensitive removal of body

n Rigor mortisn Embalmingn Siblingsn Funeral home

9



n Assistance with calls, notifications

n Destroying medicationsn Autopsy



n Assisting with arrangementsn Initiating bereavement support


Impact on Nurse

n Emotional burdenn Individual responsen Parallel suffering

10


Support for the Nurse

n Ask for help

n Verbalize

n Post-clinical debriefing

n Self-care/self-awareness


Tab 10Models

1

Module 10:Models of Excellence in Pediatric Palliative Care





The Challenge for Nurses for Quality Palliative Care

n Tremendous opportunities for nursing leadership in providing quality palliative care

n Institute change/improvement within the system.

n Nurse leadersHPNA, 2009; NCP, 2009


Costs of Palliative Care

n Managed care effects (i.e. limited benefits, financial disincentives)

n Lack of insurance

2


Expenses for Care at theEnd of Life

n Evaluation of outcome and costs of care

n Payment for care ‒Public funding‒Private insurance/managed care‒Other


Access to Palliative Care for Children

n Eligibilityn Aggressive treatmentn Poor access/uninsuredn Delayed referraln Lack of pediatric hospice


Access to Palliative Care (cont)

n Resource allocation for end-of-life care

n Optimum use of community resources

Pelant et al., 2012

3


Child/Family Perspective

n Exhausts family’s financial resources

n Payment shift to family

Dussel et al., 2011


Outcomes of End-of-Life Care

n Need to measure positive outcomes of quality care‒Competent‒Compassion‒Consistent

n Increased use of hospice and palliative care

Foster et al., 2010


Nurse’s Role in Improving Care Systems

n Current services inadequaten Caring for those “sick enough to

die”n Obligation to societyn Create systems of dialogue and

collaboration

4


What Would Reform Do?

n Making Promises‒Good medical treatment‒Symptom management‒Continuity, coordination‒Comprehensiveness‒Well-prepared‒Customized care


What Would Reform Do? (cont.)

n Focus on the population servedn Make the best of everyday n Provide efficient, sustainable,

inspiring caren Combine vision and will, with insight

and factsn Occurs on all levels


Personal Improvement

n Nurses need to expect, encourage, and join in change

n Cultivate personal virtuesn Be informedn Be an advocate

5


Changes Within Service Teams

n Rapid cycle quality improvementn Measurable changen Plan-Do-Study-Act Cyclen Outcome review


Changes Within Provider Organizations

n Your regional healthcare systemn Continuity of care across all

settings‒Inpatient‒Outpatient‒Homecare


Changes in State and Federal Policies

n Health system focus on acute illness

n Effective strategiesn Directions/resources for reformn State initiative/waivers

6


Resourcesn NHPCO. ChiPPS – Children’s Project on

Palliative/Hospice Servicesn Caring Connectionsn Children’s Hospice International Program

(CHI)n National Consensus Projectn Children Hospice & Palliative Care

Coalitionn Joint Commission


Models of Excellence

n PACTn FOOTPRINTSSMn Pediatric Palliative Care Project

‒ Improve communication with children and their families

‒ Partner with insurers and state Medicaid to pay for palliative care services


Nurses as Leaders and Agents of Change

n Individually‒Commitment and effort

n Collectively‒Creates framework and discipline to evaluate changes and respond

Porter-O’Grady & Malloch, 2010

7


Essentials for Supporting Leaders

n Community of practicen Connectionn Resources ‒ Ideas, mentors, information, technology,

money, equipment and KNOWLEDGE■ Illumination: Time, attention and marketing

focus on successes and birth of new systems


Tab 11Leadership

1


Advancing Leadership in Palliative Nursing Care

E L N E C

Think for a Moment…• When you think of a “nursing

leader,” who comes to your mind?

• What attributes does he or she have that makes him/her a vital leader?

• Why do people want to follow the nursing leaders?

E L N E C

“I alone can not change the world, but I can cast a stone across the water to create ripples.”

~Mother Teresa

2

E L N E C

“Palliative Nursing Leadership is a fundamental aspect of health care reform and assurance to quality palliative care. Hospice and palliative nurses are essential to the delivery of palliative care.”

HPNA, 2014

E L N E C

Latest Institute of Medicine Report on Dying in America

• Dying in America – Improving Quality and Honoring Individual Preferences Near the End of Life addresses nursing leadership in improving care

– Person-centered care– Improved patient-clinician

communication regarding advance care planning

– Increase in professional palliative care education– Improve payment systems

IOM, 2014

E L N E C

Leadership Is Found in Various Nursing Domains• Clinical Care• Management/Administration• Research• Education• Policy/Advocacy• Quality

3

E L N E C

Preparing for the Next Generation:Mentoring is the Key• Mentoring the next generation of

palliative nursing leaders will be fundamental in the months and years ahead.

Tracy & Hanson, 2014

E L N E C

Why Encourage Leadership-Building Now?

• Patients are sicker• Care is more complicated• The system of care is gigantic and

confusing• Opportunities exist to develop policies

and advocate for better care• Baby-boomers will be retiring—

building-up the next generationCoyle, 2015

E L N E C

It is a Challenging World for Nursing Leaders

• Aging workforce• Nursing shortage• Other healthcare-

discipline shortages • Decline in emerging

nurse leaders

• Lack of resources to encourage and build leaders

• Hostile and unhealthy work place

4

E L N E C

Despite the Challenges, Leaders Must Rise to Changes Ahead

• The 2010 Institute of Medicine Report – The Future of Nursing: Leading Change, Advancing Health

– Nursing represents the largest segment of healthcare professional (over 3 M in US)

– Nursing plays a key/pivotal role in patient care– “Prepare and enable nurses to lead change to advance

health” (p. 14)– Emphasizes the importance of nursing leadership,

partnering with other disciplines to orchestrate excellent care

IOM, 2010

E L N E C

A Leader is Key in Moving Palliative Care Forward

• Transformational leadership is critical to the development and innovation of palliative care

• Leadership requires unique skills:– Knowledge broker– Systems-level thinker– Implements evidence-based practice– Able to motivate– Change agent

E L N E C

Characteristics of a Transformational Palliative Care Nurse Leader

• Promotes a positive work attitude

• “Relationally transparent”• Believes in and supports the

team– Committed to the mission– Shows patience with others

• Consistent between values and ethical conduct

HPNA, 2014

• Empowers others to make decisions/change

• Is positive and grateful• Recognizes and celebrates

success of the work

5

E L N E C

An Excellent Leader Must Be a Good Communicator—Not a Good Talker• Speak not with a forked

tongue• Get personal• Get specific• Focus on the “leave-

behinds” and not the “take-aways”

• Have an open mind• Be quiet and listen

• Replace ego with empathy

• Read between the lines• Know what you are

talking about when you speak

• Speak to groups as individuals

• Change the message, if needed

Myatt, 2012

E L N E C

A Leader Must Be Bold In Making Necessary Changes to Improve Care• Share with your colleagues the reason

for the change– Patient satisfaction scores– Independent surveys– New reports just published– Appeal that it is the right and

ethical thing to do

E L N E C

A Leader Must Have “Vision” and Integrity to Carry The Change Out• The “vision” makes the change more…..

– Coherent– Understandable– Valuable– Directional

Trybus, 2011

• Leaders have integrity and are able to motivate and inspire others

– Followers want to trust the people who lead them

6

E L N E C

Why is Change Hard?• Many colleagues do not have the same

“vision”.• They feel the change is being imposed

on them without their input.• You are asking people to take a risk.

E L N E C

BEWARE: Change Takes Time!

• Implementing change can take 2-3 years—depending on the project

• Start with a pilot– Start small.– Measure outcomes.– Review “lessons learned”.– Provides more time for leaders and staff to

prepare for the change.– Takes fewer monetary resources from the

institution. Fullan, 2007

E L N E C

Managing Conflict Regarding Change

• Know there will be opposition to the change.• Recognize that many are fearful of change.

– Don’t minimize it.– Acknowledge it.

• Assist others to develop a sense of purpose.• Create a win-win vision.• Listen to your staff.

Fullan, 2007; Trybus, 2011

7

E L N E C

What About Those Who Follow?• There would be no need for

leaders, if there were not followers.• Yet, great followers lead in

following the leader.• A leader is only as GREAT as

his/her followers!

E L N E C

A Great Follower…

• Seizes the initiative• Creates his/her own

job• Is coachable• Anticipates• Is a great

communicator• Is goal-driven

• Shows and does not tell

• Earns trust• Offers solutions• Is compassionate• Is loyal

Turak, 2012

E L N E C

An Exemplar• The Space Between, a documentary about a

nurse practitioner, Juli Boit, who built a 24-bed hospice/palliative care home in Kip Karen, Kenya, 4 years ago

• Leadership exemplified

8

E L N E C

Nursing Leadership Exhibited Exquisitely: Post-Documentary Discussion• Trust• Vision• Pay attention to needs

around (not just physical needs)

• Needs identified, plans, recognized/orchestrates talented team

• Takes action, driven by commitment and integrity

• Works as a team—No “I” in the word “team”

• Respects and uses special and unique gifts/talents of the team

• Leads by example• Can not always “fix”

everything• Builds trust within the

community

E L N E C

• “I did not come to Kenya to “fix” anything, but rather to be a part of Kenyans who do care and who want to make a difference in their community.”

• “If we do not care about what is important to our patients, our work is incomplete.”

• “It’s a beautiful thing to watch community, even in the midst of challenges and suffering.”

• “Care must translate into action.”• “The work can seem impossible. Where do you

start? You have to start somewhere.”• “This work is not easy. It is a journey.”

E L N E C

Conclusion• Nursing leadership is needed more

today than ever before:– Remain committed to the work you have

been equipped to do.– Encourage your team.– Lead by example.

• If you are a follower, get behind your leader and lead the other followers to accomplish great things.

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