Download Community-Based Pediatric Palliative Care

Community-Based
Pediatric Palliative Care
Linda Del Vecchio-Gilbert, DNP, CPNP-PC, ACHPN
Magnolia Pediatrics
Objectives
• Understand the true definition of pediatric palliative care (PPC).
• Discuss the statistics of complex chronic conditions (CCC) and the
implications for palliative and hospice services in Rhode Island.
• Discuss when to integrate PPC based on the Pediatric Palliative Care
Referral Criteria.
•
Provide an overview of Magnolia Pediatrics.
Pediatric Palliative Care
Palliative Care
• Latin word pallium, which means “cloak” or “to cover” (Joishy, 1999).
“Palliative care for children is the active total care of the child's body, mind,
and spirit, and also involves giving support to the family. It begins when
illness is diagnosed, and continues regardless of whether or not a child
receives treatment directed at the disease.”
WHO, 2011
Goals and Early Integration of Pediatric
Palliative Care
• IOM’s report, “When Children Die” - described the significance and the need for
the improvement and early integration of palliative and end-of-life care for
children and their families.
• Improves quality of life and alleviates physical, emotional, psychological, and
spiritual suffering.
• Studies have revealed that less than 10% of children receive palliative care/endof-life when dying.
• Why children do not receive PPC (financial/regulatory/cultural/lack of
training).
Goals and Early Integration of Pediatric
Palliative Care
• Provide competent, compassionate, and consistent care and to
achieve the highest quality of life for the child and family.
• Offered at diagnosis and continued throughout the course of the
illness, whether the outcome ends in cure or death.
• Meet the physical, psychological, emotional, and spiritual needs of
the child and family.
Goals and Early Integration of Pediatric
Palliative Care
• Preserve child’s dignity
• Enhance quality of life
• Minimize suffering
• Optimize function
• Provide opportunity for personal and spiritual growth
Complex Chronic Conditions and
Implications for Palliative and Hospice
Services
Background
• Children aged 0-19 years accounted for 1.6% of all deaths in 2013 
42,328 total deaths.1
• 55% deaths during infancy.
• Two-thirds of infant deaths occurred in the neonatal period.
• 500,000 children living every day with a chronic, life-threatening
condition  require compassionate, comprehensive, consistent, and
coordinated palliative care.2
Studies Revealed
• 2001 Study revealed:
• 5,000 children with complex, chronic conditions were in the last 6 months of life.3
• 8,600 children eligible for palliative care services on any given day
• Only 5,000 of the 53,000 children who died that year received hospice services,
and usually only for a brief period of time.3
• 15.1% of US children ages 0-17 with special health care needs
= 11.2 million children!!!
• 27% have conditions that affect their activities usually, always, or a great deal and
potentially could benefit from PP/HC.4
What’s Out There?
• Recent survey of children’s hospitals across the U.S.  69% reported
having a palliative care team.5
• ~30% of programs offer home visit services
• 14.1% of participating agencies have formal pediatric palliative care
services with specialized staff.6
Causes of Death in RI
• 1422 RI residents, aged 0-17yrs died from 2000-20127
• 1049 due to medical causes
• 27% (279) had complex chronic condition as primary cause of death
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Congenital malformations
Malignancy
Chromosomal abnormalities
Neurological disease
Metabolic
Circulatory
Digestive
Heme/Immun
Other
35%
30%
12%
9.3%
5%
4.3%
1.8%
1.8%
0.8%
Sites of Death Among CCC in RI
• Hospital
72%
• Home
14%
Infants
Ages 1-17yrs
• ED
12%
• Hospice Facility/Other
2%
Data Suggests....
• Significant need for PP/HC among pediatric population in RI.
• No data for what types of services were offered and at which point in
the child’s disease course.
Pediatric Palliative Care Referral
Criteria
General Referral Criteria8
Conflicts regarding use of medical
nutrition/hydration in cognitively impaired,
seriously ill or dying patients
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New diagnosis of life-limiting/threatening
condition
Three or more hospitalizations within 6
months
Difficult pain or symptom management.
Patient, family or physician uncertainty
regarding prognosis
Family with limited social supports
AND (Allow Natural Death)/DNR order or
other ethical conflicts
Complex care coordination and/or
homegoing needs
Prolonged hospitalization for > 3 weeks
Need for hospice resource utilization
Automatic
Suggested
Malignant Disease Criteria
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Progressive metastatic cancer
Bone marrow/stem cell transplant
Diffuse intrinsic pontine glioma
Stage IV neuroblastoma
Relapsed malignant disease following stem
cell/bone marrow transplant
•
Any newly diagnosed malignant disease
with an EFS of <40 % with current therapies
Any relapsed malignant disease
Metastatic solid tumors
New diagnosis with complex pain or
symptom management issues
•
•
•
Automatic
Suggested
Pulmonary Criteria
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Patients with CF considering lung
transplant/at the time of transplant.
Patients with CF with FEV1<30%
Patients with CF with vent dependence or
those ineligible for lung transplant.
Bronchiolitis obliterans
Patients with CF with multiple
hospitalizations.
Patients with CF with pain, dyspnea or other
symptoms who would benefit from
symptom management.
Central hypoventilation syndromes
Patients who are chronically ventilator
dependent.
Automatic
Suggested
Genetic Criteria
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Trisomy 18, 13, 15
Asphyxiating thoracic dystrophy
Severe forms of osteogenesis imperfecta (type
3 or 4)
Potter Syndrome
Epidermolysis Bullosa
Rett’s Syndrome
Other rare chromosomal anomalies with
known poor neurologic prognosis
Automatic
Suggested
Neurologic/Neuromuscular/
Neurodegenerative Criteria
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Progressive neurodegenerative conditions
Muscular Dystrophy
Spinal Muscular Atrophy
Severe Traumatic Brain injury
Persistent Vegetative State
Batten Disease
Metachromatic
Leukodystrophy/ALD
Brain reduction syndromes:
 Anencephaly
 Hydranencephaly
 Lissencephaly
 Severe schizencephaly
Static encephalopathy
MRCP with comorbidities
Severe anoxic brain injury (not neonatal)
Automatic
Suggested
Metabolic/Inclusion Disease
Criteria
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Krabbe’s Disease
Hunter’s/Hurlerí’s Disease
Niemann- Pick Disease
Menke’s Disease
Pompe Disease
Sanfilippo Syndrome
Tay Sachs Disease
Fabry’s Disease
Sandoff’s Disease
•
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Severe mitochrondrial disorder.
Severe metabolic disorders for which BMT is a
therapeutic consideration.
Automatic
Suggested
Infectious Disease Criteria
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HIV/AIDS resistant to antiretrovirals
Severe Combined Immune Deficiency
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Congenital CMV/toxoplasmosis with
neurological sequelae
Severe encephalitis
Severe immunodeficiency syndromes,
particularly those for which BMT is a
consideration.
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Automatic
Suggested
Orthopedic Criteria
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Thanatophoric dwarfism
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Severe progressive scoliosis
Severe forms of dwarfism
Automatic
Suggested
Renal Criteria
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Neonatal polycystic kidney disease
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Renal failure, not transplant candidate
Automatic
Suggested
Gastrointestinal Criteria
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Multi-visceral organ transplant under
consideration
Biliary atresia
Total aganglionosis of colon
Progressive hepatic or uremic
encephalopathy
Feeding tube under consideration for any
neurological condition
Long-segment Hirshsprung’s
Short-gut syndrome with TPN dependence
Severe feeding intolerance (autonomic
enteropathy/chronic intestinal
pseudoobstruction)
Automatic
Suggested
Neonatal Criteria
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Extreme prematurity with concomitant severe
BPD, Grade IV IVH, PVL, etc
Severe birth asphyxia
Hypoxic ischemic encephalopathy (moderate
to severe)
VLBW infants
Automatic
Suggested
Cardiac Criteria
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Single ventricle cardiac physiology
Severe pulmonary hypertension
Down syndrome with significant cardiac
abnormality
Ebstein’s anomaly
Eisenmanger’s Syndrome
Cardiomyopathy: hypertrophic or severe
dilated
Pulmonary atresia (especially if associated
with hypoplastic pulmonary arteries)
Ongoing discussion of cardiac transplant
Combination of cardiac diagnosis with
underlying neurologic/chromosomal
diagnosis
Complex congenital heart disease
ECMO candidate
Severe myocarditis
Automatic
Suggested
Intensive Care Criteria
• Prolonged or failed attempt to wean
mechanical ventilation
• Multi-organ system failure
• Compassionate extubation
• Severe head injury following NAT
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PICU stay longer than two weeks
Irreversible brain injury that will impact
functional status
Immersion injury
Automatic
Suggested
About Magnolia Pediatrics
• Magnolia Pediatrics is an independent pediatric practice that was
established in 2015.
• Committed to caring for children with complex, chronic conditions
that develop prenatally, during infancy, childhood, or adolescence.
• Care is centered on the child and engages, respects, and partners
with the family.
Mission & Vision
• Mission:
• Provide the best quality of life for the child living with a complex
chronic and/or life limiting condition.
• Vision:
• Focus on compassionate care that is meaningful and will foster the
child and family’s hopes.
• Provides an extra layer of care, along with the child’s primary care
provider, to support the emotional, social, spiritual, and physical needs
of the child and family.
***Will NOT take the place of the primary care provider and/or specialists!!!!
Child-Family Centered Care Will Focus On.....
• Enhanced quality of life by caring for the emotional, social, spiritual, and physical
needs of the child and family
• Assessment and alleviation of pain and symptoms cause by the child’s complex,
chronic condition
• Empowerment of the child and family in decision-making
• Creating meaningful partnerships with healthcare providers and other community
members
• Advocating for the child and family
• Support for advanced care planning
• House calls
• Integrative Therapies & Creative Arts (i.e. yoga, music, pet, massage, reiki, art,
storytelling)
Services: Pain Management
• Perform comprehensive assessment of pain
• Identify factors that may influence the child's experience of pain
• Identify medications appropriate to severity and specific type of pain
• Respond to psychosocial, cultural, and spiritual issues related to pain
• Implement non-pharmacologic interventions and facilitate integrative therapies
• Assess for side effects, interactions, or complications of pain management
• Evaluate efficacy of pain relief interventions
• Evaluate family comprehension and participation in the pain management plan
Services: Symptom Management
• Perform comprehensive assessment of symptoms
• Identify medications appropriate to manage symptoms
• Respond to psychosocial, cultural, and spiritual issues related to symptoms
• Implement non-pharmacologic interventions and facilitate integrative therapies
• Assess for side effects, interactions, or complications of symptom management
• Evaluate efficacy of symptom relief interventions
• Evaluate family comprehension and participation in the symptom management plan
Services: Family-Centered Care
• Facilitate effective communication among the team and between family members
• Facilitate opportunities for memory making or legacy building
• Identify child's awareness of the diagnosis, prognosis, and plan of care
• Identify the family's desire for disclosure of diagnosis, prognosis, and plan of care to the
child
• Facilitate communication strategies according to the child's cognitive, verbal, and social
abilities
• Identify the psychosocial needs of siblings
• Access resources to meet the needs of siblings (e.g., child life therapy, counseling)
Services: Education
• Assess developmental level, knowledge base, and learning style
• Identify and respond to barriers to ability to learn
• Teach pain and symptom management
• Discuss benefit versus burden of treatment options
• Teach medication administration and management
• Prepare child and family for transitions between care setting (e.g., hospital,
outpatient, home, and community)
Services: Advocacy
• Facilitate communication and shared decision making between child, family, and
care providers
• Advocate for a child's choice to participate in decision making throughout the
trajectory of care
• Determine child's and family's hopes, wishes, and preferences throughout the
trajectory of care
• Support advance care planning (e.g., birth plans, advance directives, life support,
DNR status, withdrawal or withholding of non-beneficial medical interventions)
• Assist the child to maintain optimal function and quality of life
Services: Care at the End of Life
• Identify signs the child is entering the terminal phase of condition
• Identify and respond to:
• Physical indicators of imminent death (e.g., mottling, changes in breathing, decreased
consciousness, decreased output, changes in vital signs)
• Psychological indicators of imminent death (e.g., letting go, permission to die, near
death awareness)
• Pain and symptoms at the end of life (e.g., terminal restlessness, work of breathing,
palliative sedation)
• Honor cultural and spiritual beliefs at the end of life (e.g., care of the body,
rituals, faith traditions)
• Provide comfort and dignity at time of death
Creative Arts, Yoga, Music Therapy, Message
and Reiki, Pet Therapy, and Family Day
Accepted Insurances
• Aetna
• Cigna
• BCBS
• Medicaid
• Neighborhood
• Tricare
• Tufts
• United Health Care
Website
http://www.magnoliapediatricsri.com
Questions....
References
1. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization,
October 2014. 2Social Security Act, Section 1861(dd)(1). United States Social Security Administration.
2. Himelstein, B., Hilden, J., Boldt, A., & Weissman, D. (2004). Pediatric Palliative Care. The New England Journal of Medicine, 350
(17), 1752-1762.
3. National Hospice and Palliative Care Organization. ChiPPS White Paper: A call for change: recommendations to improve the
care of children living with life-threatening conditions. October 2001
4. US Department of Health and Human Services, Health Resources and Services Administration, Maternal and Child Health
Bureau. The National Survey of Children with Special Health Care Needs Chartbook 2009-2010. Rockville, Maryland: US Department
of Health and Human Services.
5. Feudtner, et al. Pediatric palliative care programs in children’s hospitals: a cross-sectional national survey. Pediatrics 2013 Dec;
132(6): 1063-7
6. National Hospice and Palliative Care Organization. NHPCO 2013 National Summary of Hospice Care, November 2014
7. Jamorabo, D. S., Belani, C. P., & Martin, E. W. (2015). Complex Chronic Conditions in Rhode Island's Pediatric Populace:
Implications for Palliative and Hospice Services, 2000-2012. Journal Of Palliative Medicine, 18(4), 350-357 8p.
doi:10.1089/jpm.2014.0226
8. Friebert, S. & Osenga, K. (n.d.). Pediatric palliative care referral criteria. Retrieved at http://www.capc.org/tools-for-palliativecare-programs/clinical-tools/consult-triggers/pediatric-palliative-care-referral-criteria.pdf