Transcript Building a Pediatric Palliative Care Program in a Hospice

Building a Pediatric Palliative Care
Program in a Hospice Environment
Diane Baldi RN CHPN
Chief Executive Officer
Hospice of the Sacred Heart
Wilkes Barre, Pennsylvania
Objectives
• Identify and assess the need for a pediatric
palliative care program
• Identify partners to assist in development of
pediatric palliative care team
• Identify methods for establishing the team
• Identify benefits and challenges of a pediatric
palliative care team
• Assess effectiveness of pediatric palliative care
team
Introduction
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Hospice of the Sacred Heart
ADC 230
100+ staff members
Medical Team
PATH program
Bereavement programs
Pediatric Program
“Sometimes in life there is
that moment when it’s
possible to make a change
for the better.
This is one of those
moments.”
Elizabeth Glaser
Concurrent Care Requirement
• Section 2302 of PPACA (Patient Protection and
Affordable Care Act of 2010)
• Requires the state Medicaid program to pay for
both curative/life-prolonging treatment and
hospice services for qualifying children under the
age of 21
• Physicians must still verify that the child has a
prognosis of 6 months or less
NHPCO Standards of Practice for
Pediatric Palliative Care
• Deliver safe, effective, high quality care for
children and their families
• Enhance effective identification of and response
to family needs, including the specifics of care
required for children of all ages
Standards of Practice Continued
• Improve knowledge, skills and support for care
providers
• Identify unmet needs in care delivery so that
organizations may expand their services or
develop partnerships with other care providers to
fill these gaps and address challenges found in
providing care to children and their families
Identifying and Assessing Need
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Census info
Referral system
Cost, time, need of program
NHPCO Facts and Figures April 2009
18.2% children 0-19 died at home (only 56%
hospices have cared for children)
• East vs. West
Fundamental Differences Caring
for Children
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Children are not small adults
Prognostication complicated
Fragmented care
Legal voice absent
Children are members of many communities
Grief has devastating implications
Identifying Partners to Assist in the
Development of Your Team
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PACT
Local tertiary care centers
NHPCO
Local Pediatricians
Bereaved families
Home health agencies
Methods for Establishing Pediatric
Team in a Hospice Environment
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Policies/Procedures
24/7 specially-trained providers
Key contact person
On call pediatric consultative support available
24hr/day
• Staff education/conferences
• Ethics Committee
Establishing Pediatric Team
continued….
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Volunteers
On call staff
Pediatric library
Financial Resources
Partner with local schools, social services, home
health, faith groups
• All therapies on hand
Ava: A Case Study
• 5 year old little girl with a glioblastoma
multiforme
• Being treated at CHOP
• Family,home,staff, Pediatrician
• Challenges
• Benefits
• Lessons learned
Summer: A Case Study
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11 year old girl with advanced osteosarcoma
Family
School
IPad
Palliative sedation
Medical Director
Gary: A Case Study
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18 year old with leukemia
Senior prom
Media and social challenges
Bereavement needs
Communication
Benefits of a Pediatric Palliative
Care and Hospice Team
• Team environment, reward
• New experiences and knowledge
• New opportunities to work with tertiary care
centers (Hospice team meets the child and family
in the acute care setting to develop goals
together)
• Assisting patients and families during this
difficult transition
Challenges of a Pediatric Care
Team
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Social Network
Staff concerns
Lack of experience in caring for children
High tech palliation
On call staff
Respite care, volunteers
Differences in caring for adults vs. children
What We’ve Learned…
• Senior management and BOD by-in is imperative
• Financial implications
• Importance of gathering team from admission to
death to bereavement
• Major involvement of pastoral care, social
services for family and team
• Importance of preserving memories
• We have a long way to go….and much to learn
Still learning…….
• Continue educational opportunities
• Partner with local schools and social service
agencies
• Partner with specialty healthcare agencies
• Contact local/regional pediatricians
• Make respite available to families
• Awareness of agency stress
What We’ve Learned continued…
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Support staff
Bereavement care
Pediatric palliative care orders
QAPI project to assess areas of improvement
Hospice Agency Responsibilities
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Debriefings and discussions of patients
Remembrance services
Foster collaboration with physicians
Outreach programs and in-services to hospitals,
physicians, and the community
• Recognize the need for staff time off and rotation
Hospice Agency Responsibilities
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Involve staff in forms development
Provide emotional support
Reassignment to different duties
EAP
Communication
Care Planning/Documentation
In conclusion….
A pediatric palliative care program that:
• incorporates a robust set of both medical and
psychosocial interventions
• has flexibility around eligibility and payment
sources
• is committed to education and collaboration
can achieve and maintain a successful
palliative and hospice care program for
children.
Questions, Comments,
Suggestions???
Resources
• NHPCO “Standards of Practice for Pediatric
Palliative Care and Hospice” 2009
• NHPCO “Concurrent Care for Children
Implementation Toolkit”
• NHPCO “Facts and Figures: Pediatric Palliative
and Hospice Care in America” April 2009
• Pediatric ELNEC
Thank You!!!
Diane Baldi RN CHPN
CEO Hospice of the Sacred Heart
600 Baltimore Drive
Wilkes Barre, PA 18702
(570) 706-2400
[email protected]