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Early Integration of Pediatric Palliative Care Services

N272: Care of Children with Special Health Care Needs

Sydney Gressel

on 3 December 2014

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Transcript of Early Integration of Pediatric Palliative Care Services

For children with life-threatening conditions and their families, how might early integration of pediatric palliative care services improve family-centered care?
Definition of
'Life-Threatening Condition':
"An acute or chronic condition where the likelihood of dying before the age of independent adulthood is high, and where either curative attempt is not succeeding or no cure exists." (Siden, et al., 2014)
Pediatric Palliative Care
Aims to prevent and relieve suffering by "controlling symptoms and to provide other support to patients and families in order to maintain and improve their quality of living...palliative care may be applied to all stages of illness, whether terminal or not." (Lankin, et al., 2008).
Advanced Practice Nurses
Benefits of Pediatric Palliative Care Services
Palliative Care can accommodate cultural differences, familial preferences and communication styles
Improve care and satisfaction with care
Reduce intensive care unit length of stay
Decrease hospital costs
Promote continuity of care and ease transitions
Improve communication between multiple providers
Redefine goals and advocate for families
Relieve symptoms and improve pain control
Respite care services for families
Ongoing support and education for siblings
Advanced planning and End-of-Life support
500,000 children in the US are living with a life-threatening condition
In 2010, 45,068 infants, children & adolescents died nationally
In 2010, 4,549 died in California
Nearly 70% of children who die in the US are eligible for specialized end-of-life care
Fewer than 10% of dying children receive the care and benefits of specialized programs
1) Make EARLY referrals to pediatric palliative services
2) Recognize our limitations in this area of care
3) Foster partnerships with palliative care teams
4) Petition health care institutions for ongoing education, palliative care training, and core competencies - ie. ELNEC training
5) Build relationships and offer anticipatory guidance
6) Facilitate difficult but HONEST conversations
Early Integration of Pediatric Palliative Care Services
PICO Question:
N272: Care of Children with Special Health Care Needs
Sydney Gressel

Characteristics of Pediatric Palliative Patients
Current Limitations
in California
Palliative care is misunderstood and under-utilized
<10% of pediatric oncologists and have training in palliative care
Only 35% of California hospitals have pediatric palliative care services & limited weekday hours only
Palliative support for inpatient and outpatient transitions is lacking
Pediatric palliative services are relatively new:
Median program in CA is 3.4 years old
1/3 of palliative services are <12 months old
Lessons from
Bereaved Parents
Parents and caregivers are "hidden sufferers" & can experience more psychological suffering than patients
Bereaved parents emphasized importance of:
maintaining close relationship w sick child
sufficient info and explanation of disease
support and time for siblings
decision-making around end-of-life
advice about what parents can do for their sick child
These families hold contradictory hopes. Ex: hope that illness will be cured & hope that death will not involve suffering
Tips for Advanced Practice Nurses Facilitating Difficult Conversations
What are you hoping for?
and what else are you hoping for?
What else are you hoping for?
Would it be helpful to talk about your concerns if things don't go as we hope?
Allow families to make concrete decisions about how end-of-life will unfold without being forced to accept that future as inevitable
Provide an opportunity to share thoughts about the future, and to experience wishes that are conflicting
Clear, honest information can result in greater hope & peace of mind, and reduce stress & fear
Include young people in the decision-making process

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