Implementation and lntegration of Perinatal, Neonatal, and Pediatric Palliative Care to Promote Policy Changes, Improve Clinical Practice, and Educate Nurses

1
Implementation and lntegration of Perinatal,
Neonatal, and Pediatric Palliative Care to
Promote Policy Changes, Improve Clinical
Practice, and Educate Nurses

• Presented by
• Joetta Deswarte Wallace, RN, MSN, NP-C, CHPPN
• Vanessa Battista, MS, RN, CPNP

National Hospice and Palliative Care Organization
(NHPCO) November 5, 2012
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Objectives

• Identify barriers to improving pediatric
  palliative care
• Describe collaborative approaches to enhancing
  implementation of palliative care knowledge into
  policy and practice
• Develop new ideas/processes to implement
  evidence-based knowledge into the care continuum

3
Death of Children

• Annual Deaths in the US
• 53,000 lt19 years of age
• 800,000 miscarriages
• 33,000 stillbirths
• 19,000 neonatal (Field Behrman, 2003)

4
Serious and Chronic Medical Conditions of Children

• An estimated 1 million US children (10) live
  with life-threatening illnesses
• Significant gaps in access to healthcare and
  palliative care
• Socially disadvantaged have higher mortality
  rates at younger ages

Field Cassel, 1997 Hoyert et al., 2005
Yabroff et al., 2004
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Percentage of Total Childhood Deaths by Age Group
IOM, 2003
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History of End-of-Life Nursing Education
Consortium (ELNEC)

• Identified gaps 1995 2001 (first course)
• Curriculum survey
• Textbook review
• End-of-Life (EOL) survey
• Collaboration with AACN to develop curriculum and
  integrate into BSN, MSN, and ELNEC courses
• -Currently 15,000 ELNEC-trained nurses
• Ferrell et al., 1999

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Perinatal Neonatal Considerations

• Identification of life-limiting conditions
• Ultrasound, Real-time 3D
• Increased awareness of needs of dying
• newborns and their families
• Perinatal hospice and palliative care
• Standards of Professional Practice
• NANN, AAP, NHPCO, AWHONN
• Field Behrman, 2003
• 
  
  
  

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Standards of Professional Practice

• National Association of Neonatal Nurses (NANN)
• position statement (2006) Nurse Involvement in
  Ethical Decisions (Treatment of Critically Ill
  Newborns) ? palliative care in NICU
• American Academy of Pediatrics (AAP)
• Non-initiation or withdrawal of intensive care
  for high-risk newborns
• National Hospice and Palliative Care Organization
  (NHPCO)
• standards for pediatric palliative care hospice
  
• Association of Womens Health, Obstetrics, and
  Neonatal Nurses (AWHONN)
• perinatal bereavement curriculum and standards
  for nursing practice in the care of newborns

9
History of Pediatric Palliative Care

• When Children Die
• Institute Of Medicine (IOM) Report (2003)
• Integrating effective palliative care
  from the time a childs
  life-threatening medical problem is diagnosed
  will improve care for
  children who
  survive as well as children
  who die - and will help the families
  of all these children.

10
IOM Consensus Definition

• Palliative care seeks to
• Prevent or relieve the symptoms produced by a
  life-threatening medical condition or its
  treatment
• Help children with such conditions and their
  families live as normally as possible
• Provide families with timely and accurate
  information to aide in decision making

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Pediatric Palliative Care Training

• Training programs
• classes
• web-based courses
• ELNEC Train-the-Trainer Courses
• face-to-face courses internationally 76
  countries
• 1600 ELNEC-PPC trained nurses
• ELNEC, 2012 EPIC, 2011 Hospice Education
  Network, 2012

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ELNEC Pediatric Palliative Care (PPC)

• ELNEC-Pediatric Palliative Care
• - First National Trainers Conference August
  2003
• Curriculum
• Introduction to PPC
• Perinatal Neonatal PC
• Communication
• Ethical/Legal
• Cultural/Spiritual
• 
  
  
  
  
  ELNEC-PPC, 2012

• Pain Management
• Symptom Management
• Care at Death
• Grief
• Models of Excellence

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Pediatric Palliative Care
End-of-Life Care
Curative Care
Supportive Care
Anticipatory Bereavement Care
After Death Bereavement Care
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Context Challenges

• More children are now surviving and living longer
• Differing patterns of child mortality
• 50 all deaths in infancy
• 30 deaths from injury
• Unique issues
• Not small adults
• IOM Report, 2003

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Challenge 1

• DEFINING
• PEDIATRIC PALLIATIVE CARE

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Challenge 2

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

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Challenge 3

• LIMITED ACCESS AND RESOURCES FOR SPECIALIZED
  SERVICES

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Challenge 4

• FRAGMENTED CARE

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Challenge 5

• COMMUNICATION

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Challenge 6

• INAPPROPRIATE CONTINUATION OF USE OF ADVANCED
  LIFE-SAVING TECHNOLOGY

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Challenge 7

• ETHICAL AND LEGAL ISSUES

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Challenge 8

• INTEGRATING CULTURE AND
  SPIRITUALITY INTO PALLIATIVE CARE

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Challenge 9

• UNCERTAIN
• PROGNOSIS

Davies, et al. 2008
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Challenge 10

• INADEQUATE ASSESSMENT AND MANAGEMENT OF SYMPTOMS

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Challenge 11

• FAMILY NOT READY TO
• ACKNOWLEDGE
• INCURABLE CONDITION

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Challenge 12

• INTEGRATING KNOWLEDGE OF PALLIATIVE CARE INTO
  CURRICULUM AND TRAINING PROGRAMS

Liben, Papadatou, and Wolfe, 2008
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Challenge 13

• TEAM CHALLENGES
• Preconceived ideas EOL vs. palliative care
• Overlapping roles
• Were already doing it
• Undermining care plan
• Taking over

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Challenge 14

• ACKNOWLEDGING PROFESSIONALS RESPONSES AND
  NEED FOR SUPPORT

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End-of-Life Decisions for Child Parents
Perspectives

• Questionnaire
• -56 families 36 mothers and 20 fathers
• Identified 6 priorities for EOL care
• Honest and complete information
• Ready access to care staff
• Emotional expression and support by staff
• Communication and care coordination
• Preservation of integrity of parent-child
  relationship
• Acceptance of spirituality and religious faith
  
• 
  Pediatrics, September 2007,102(3)

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Overcoming Barriers

• Clinical Care
• Establish area-specific triggers for palliative
  care team consults
• Establish a bereavement program
• Education
• Help clinicians learn communication strategies
  for discussing difficult topics
• Training
• Facilitate nurse support groups in critical areas
  to learn new coping skills
• Research
• Why do some families decline hospice?
• What do parents think of the palliative care
  service?

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Best Practices Nurses and Other
Interdisciplinary Team Members

• Schools of Nursing
• Continuing Education
• Childrens Hospitals
• Hospices
• National Efforts
• International Efforts

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PPC at Boston College School of Nursing Grant
Overview

• The Pediatric Palliative Care Program at Boston
  College is funded by U.S Department of Health and
  Human Services, Health Resources and Services
  Administration (HRSA)
• Began with an Adult Palliative Care Program Grant
  in 2006
• Pediatrics began as an extension of the adult
  program
• Adult Palliative Care Program is currently
  ongoing
• Pediatric Palliative Care Program will continue
  into 2013

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Grant Objectives

1. Advisory Board
2. Diversity
3. Student Recruitment
4. Clinical Placements
5. Community Linkages

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Curriculum and Courses

• Summer Course NU 640 Palliative Care I
  Foundations of Life-Threatening Illness, Disease
  Progression and Quality of Life
• Year 1 29 students enrolled/completed the course
• Year 2 40 students enrolled/completed the course
• Year 3 16 students enrolled/completed the course
• Fall Course NU 645 Pediatric Palliative Care
  II Pain and Symptoms and Suffering in the Child
  with Life-Threatening Illness
• Year 2 7 students enrolled/completed the course
• Year 3 13 students enrolled/completed the course
• Spring Course NU643 Palliative Care III
  Palliative Care and the Advanced Practice Nursing
  Role
• Year 2 12 students enrolled/completed the course
• Year 3 13 students enrolled/completed the course

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Hospital Based Program

• Grant-funded for 2 years
• NP only
• Educational Focus

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Interdisciplinary Focus Groups

• General Pediatrics
• Hematology/Oncology
• Pediatric Intensive Care Unit
• Neonatal Intensive Care Unit
• Perinatal

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Results of Hospital Based Program

• Staff needs assessment
• Diagnostic triggers
• Annual goals and accomplishments

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Conclusions

• There are several barriers to PPC.
• Collaborative approaches are necessary to
  implement palliative care knowledge into policy
  and practice.
• New ideas and processes enhance the integration
  of evidence-based knowledge into the care
  continuum.

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References

• Davies, B., Sehring, S. A., Partridge, J. C.,
  Cooper, B. A., Hughes, A., Philip, J. C., et al.
  (2008). Barriers to palliative care for
  children Perceptions of pediatric health care
  providers. Pediatrics, 121(2), 282-8.
• Education in Palliative and End-of-life Care
  (EPEC). Retrieved July 7, 2012 from
  http//epec.net/
• End-of-Life Nursing Education Consortium. (2012).
  ELNEC-PPC. Duarte, CA City of Hope.
• Ferrell, B.R, Virani, R., Grant, M. (1999).
  Analysis of end-of-life content in nursing
  textbooks. Oncology Nursing Forum, 26(5),
  869-876.
• Field, M.J., Behrman, R.E. (Eds). (2003). When
  children die Improving palliative and
  end-of-life care for children and their
  families. Washington, D.C. National Academy
  Press.
• Field, M. J., Cassel, C. K. (Eds.). (1997).
  Approaching death Improving care at the end of
  life Report of the Institute of Medicine Task
  Force. Washington, DC National Academy Press.
  
• Hospice Education Network. (2012). Welcome to
  HEN-the best online training. Retrieved July 5,
  2012 from http//hospiceonline.com/
• Hoyert, D. L., Heron, M. P., Murphy, S. L.,
  Kung, H. C. (2006). Deaths final data for 2003.
  National Vital Statistics Report, 54(13),
  1-120.
• Liben, S., Papadatou, D., Wolfe, J. (2008).
  Paediatric palliative care challenges and
• emerging ideas. Lancet, 371, 852-864.
• Yabroff, K. R., Mandelblatt, J.S., Ingham, J.
  (2004). The quality of medical care at the end of
  life in the USA Existing barriers and examples
  of process and outcome measures. Palliative
  Medicine, 18(3), 202-216.