Pediatric Palliative Care

The mission of LMHPCO is to improve the quality of hospice & palliative care in Louisiana & Mississippi.

Gulf States Pediatric Palliative Care Consortium


Vision
:  All children and families in the gulf state region facing serious illness will have access to comprehensive support through the entire duration of serious illness both in the hospital and the home with the goal to prevent, anticipate and mitigate suffering in all its forms. 

Mission:  We will achieve our vision through an interdisciplinary workforce advocating for every child and family to have access to the support necessary to live as well as possible with serious illness. 

Our interdisciplinary workforce will:

  • Strive to advance education of the gulf coast community to  provide quality clinical care both in our hospitals and in the home 

  • Collaborate with our Gulf Coast community to advance education 

  • Engage in advocacy 

  • Provide leadership and expertise in the region 

  • Identify utilization and gaps within hospice and palliative care in Louisiana

  • Send questions to Pediatrics@LMHPCO.org 

Definition of Pediatric Palliative Care per NHPCO Guidelines:

Beneficial at any stage of a serious illness (and at any age), palliative care is an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families and caregivers. Palliative care can be delivered in any care setting through the collaboration of many types of care providers. Through early integration into the care plan of seriously ill people, palliative care improves quality of life for both the patient and the family. 

Resources for Pediatric Hospice and Palliative Care

Pediatric Hospice Care Resources
Medicaid Links 

Clinical Guidelines & Helpful Resources:

 

Education & Training Resources

UPCOMING:

3rd Annual Interdisciplinary Pediatric Palliative Oncology Symposium:
September 25-27, 2019 
St Jude Children’s Research Hospital
Memphis, TN

In-Person Training

Title

Website

Description

Education in Palliative and End-of-Life Care Program (EPEC)

epec.net/epec_pediatrics.php

An annual offering of 23 core and 2 elective topics in pain and symptom management in pediatric palliative care taught as a combination of distance learning modules in-person conference sessions. Curriculum translated into French and Spanish. More here: https://www.sciencedirect.com/science/article/abs/pii/S0885392419303136.

Program in Palliative Care Education and Practice (PCEP) Pediatric Track

http://www.hms.harvard.edu/pallcare/PCEP/PCEP.htm

Week-long, in-person learning opportunities for clinician educators who wish to become expert in the practice and teaching of comprehensive pediatric palliative care.

End-of-Life Nursing Education Consortium Pediatric Palliative Care Train-the-Trainer (ELNEC-PPC)

http://www.aacn.nche.edu/elnec/trainings/national#PEDIATRIC

Train-the-trainer format pediatric palliative care in-person curriculum for nurses.

Pediatric Pain Masters Class

http://noneedlesspain.org/ppmc/

Education in pharmacological, medical, psychosocial and integrative therapies for pediatric patient pain management from a holistic and interdisciplinary perspective.

National Hospice and Palliative Care Organization (NHPCO) Pediatric Palliative Care Training (PPCT)

http://www.nhpco.org/childrenspediatricschipps/pediatric-palliative-care-training-0

Two-day intensive pediatric training on the provision of quality care to infants and children facing life-threatening conditions and their families.

Online Training – Pediatric Specific

Title

Website

Description

CSU Institute for Palliative Care – Adult to Pediatric: Preparing Palliative Care Professionals to Care for Pediatric Patients

https://csupalliativecare.org/programs/pediatrics/

Online curriculum that equips hospice and palliative care practitioners with the knowledge and resources to ensure young patients and their families receive the best care possible

International Children’s Palliative Care Network (ICPCN) E-Learning Programme

http://www.icpcn.org/icpcns-new-elearning-programme/

Online courses on pain assessment and management in children, childhood development, communicating with children, and pediatric grief and bereavement.

Vision of Hope: Integration of Palliative Care in Chronic Pediatric Disease

http://www.bioethicsinstitute.org/research/projects-2/hope

PPC curriculum specifically focused on patients with Sickle Cell Disease or Duchenne Muscular Dystrophy. Short interactive modules.

Oncotalk

http://depts.washington.edu/oncotalk/

Learning modules with pearls and pitfall examples to foster medical professional’s comfort in discussing difficult topics with patients.

Pediatrics Ethics Consortium (PEC)

http://www.pediatricethics.org/

Online resources concerning ethical issues – offers relevant to palliative care.

Online Training – General Palliative Care

Title

Website

Description

NHPCO’s End-of-Life Online (E-OL)

https://www.nhpco.org/online-learning/

Online courses and webcasts relevant to palliative care to include clinical and psychosocial/spiritual domains. Not Pediatric specific.

Stanford Palliative Care Training Portal

http://palliative.stanford.edu/

Training portal on an array of topics from opioid conversion, dyspnea, clinical prognostication, and care transitions.

Online Resources – Pediatric Specific

Title

Website

Description

AAP Policy Statement: Pediatric Palliative Care and Hospice Care Commitments, Guidelines, and Recommendations

https://pediatrics.aappublications.org/content/pediatrics/132/5/966.full.pdf

Guidelines and recommendations from AAP on PPC and PHC

DFCI Blue Book – Pocket Clinical Resource

http://pinkbook.dfci.org/

Pocket clinical resource for pediatric pain and symptom management. Same website also has two adult pocket guides: pain management and nausea and vomiting symptom management.

Association for Children with Life-Threatening or Terminal Conditions and Their Families (ACT) Professional Resources

http://www.togetherforshortlives.org.uk/professionals/resources

 

Downloadable symptom control guidelines, palliative care commissioning reports, and patient education pages.

Pediatric Decision Aids – Coalition for Compassionate Care of CA

https://coalitionccc.org/pediatric-decision-aids/

PDF Decision Aids for breathing machines, CPR, and tube feeding

UK Association for Pediatric Palliative Medicine (APPM)

https://www.appm.org.uk/training/combined-curriculum/

Online guide for pediatric palliative medicine competencies, including areas for competency and skill levels expected at different points in training

Courageous Parents Network

www.courageousparentsnetwork.org

 

Resource for parents of seriously ill children. Many tools for providers to learn and/or use with families also.

Workshops in End-of-Life Training for Health Professionals in Children’s Hospitals

https://open.umich.edu/find/open-educational-resources/medical/workshops-end-life-training-health-professionals-childrens-hospitals

Online modules specifically to guide clinicians through end-of-life for newborns, children, and adolescents who die in the hospital.

NINR Palliative Care for Children

Palliative Care: Conversations Matter

https://www.ninr.nih.gov/newsandinformation/conversationsmatter#.VY6-pUay4nJ

 

Tools and resources to help clinicians discuss palliative care with pediatric patients and their families. 

Download or order complimentary print copies in English or Spanish of customizable tear-off pad for Palliative Care: Conversations Matter ®

Online Resources – General Palliative Care

Title

Website

Description

American Academy of Hospice and Palliative Medicine (AAHPM) Focused Assessment and Study Tool (HPM FAST)

http://aahpm.org/self-study/hpm-fast

Boards-focused learning modules with accompanying multiple choice study questions.

Center to Advance Palliative Care (CAPC)

https://www.capc.org/training/

Online palliative modules including both operational and clinical topics. Nothing pediatric-specific.

Clinical Practice Guidelines for Quality Palliative Care, 4th Ed.

http://www.nationalcoalitionhpc.org/ncp/?utm_source=NCP+Clinical+Practice+Guidelines+&utm_campaign=NCP+Guidelines&utm_medium=email

PDF guidelines, primarily adult-focused but the 4th edition is the first to include pediatrics also

MJHS Institute for Innovation in Palliative Care – PDF Resources

https://www.mjhspalliativeinstitute.org/ccb/professional-resources-2/?mypage=1

Online resources for palliative care topics, mostly clinical and adult-focused.

Palliative Care Online Journal Club

http://journalclub.pallcare.info/index.php

Filtered and organized articles on palliative care for current, convenient browsing. Includes adult palliative care.

Vital Talk

http://vitaltalk.org

An array of talking maps and teaching maps relevant to conflict resolution, bearing witness, navigating emotions, and family conversations.

Certificate Programs

Title

Website

Description

University of Washington Graduate Certificate Program in Palliative Care, Pediatric Track

www.uwpctc.org

9-month interprofessional program with a combination of online and distance learning as well as three in-person workshops.

Program Development

Title

Website

Description

Palliative Care Leadership Centers

https://www.capc.org/palliative-care-leadership-centers/

A national initiative of the Center to Advance Palliative Care (CAPC) for year-long palliative care team mentoring with in-person visits, webinars, and virtual office hours.

CAPC Pediatric Palliative Care Delivery Guide – Hospital-Based

https://www.capc.org/toolkits/designing-a-pediatric-palliative-care-program/

Online resources, mostly members-only, for the development of a hospital-based PPC team. Guidance on program financing, making the case to C-suite, program design, program marketing, program measurement, etc.

Professional Organization Partnerships

Listing of Professional Organizations

Website

American Academy of Hospice and Palliative Medicine (AAHPM) – Pediatric Special Interest Group

http://aahpm.org/communities/pediatric-sig

American Academy of Pediatrics (AAP) – Section on Hospice and Palliative Medicine

http://www2.aap.org/sections/palliative/

American Pain Society Shared Interest Groups (Palliative Care and Pain in Infants, Children, and Adolescents SIGs)

http://americanpainsociety.org/get-involved/shared-interest-groups/overview

American Society of Pediatric Hematology Oncology (ASPHO) Palliative Care Special Interest Group

http://aspho.org/membership/special-interest-groups/palliative-care

Center to Advance Palliative Care (CAPC) – Pediatric Palliative Care

https://www.capc.org/topics/pediatric-palliative-care/

Children’s Hospice and Palliative Care Services Project (ChiPPS)

http://www.nhpco.org/pediatric

Children’s International Project on Palliative/Hospice Services Workgroup

http://www.promotingexcellence.org/chipps/

Children’s Hospice International (CHI)

http://www.chionline.org/about-chi/

Hospice and Palliative Nurses’ Association (HPNA)

http://hpna.advancingexpertcare.org/

Institute for Patient- and Family-Centered Care (IFCC)

http://www.ipfcc.org/

International Children’s Palliative Care Network (ICPCN)

http://www.icpcn.org/

National Consensus Project for Quality Palliative Care (NCP)

http://www.nationalconsensusproject.org/

National Hospice and Palliative Care Organization (NHPCO)

http://www.nhpco.org/

National Pediatric Hospice and Palliative Care Collaboration (NPHPCC)

http://hpna.advancingexpertcare.org/national-pediatric-hospice-and-palliative-care-collaborative/

National Palliative Care Research Center (NPCRC)

http://www.npcrc.org/

Social Work in Hospice and Palliative Care Network (SWHPN)

http://www.swhpn.org/

 

 

 

Webinar: Pediatric Palliative Care

 

Hospice and Palliative Care Terms and Helpful Videos

 

 

 

TOOLKITS:

 

For Families from Providers:

 

Birth Plans:

 

 

Helpful links for families facing serious illness:  

Courageous Parents Network

 

Pediatric Palliative Care Program Development:

 

Position Statements

Policies

 

HPM TERMS IDENTIFIED and Helpful Distinctions:

 

VIDEO –What to say and Do; https://youtu.be/7kQ3PUyhmPQ

Patient Perspectives: The Shu Family’s Palliative Care Story  https://soundcloud.com/get-palliative-care/a-quality-life-episode-2-the-shu-familys-palliative-care-story

TOOLKITS:

Brochure

 

Helpful links to BOOKS for children/families:  

Courageous Parents Network

FIND A HOSPICE PROVIDER

FIND A PALLIATIVE CARE PROGRAM

CONTACT LMHPCO

 

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