Complex Care
Curriculum
Palliative Care
Palliative Care for the
Medically Complex Child
Melanie Anspacher, MD
Neha Shah, MD
Complex Care
Curriculum
Palliative Care
Know the definition and general principles
Identify opportunities to initiate palliative care
Plan communication of prognosis to families
Recognize the role of the provider in supporting families
with decision-making
Describe the role of the multidisciplinary team
Outline some fundamental principles of pain management
Discuss common dilemmas and ethical issues
Recognize limitations and barriers
Complex Care
Curriculum
Palliative Care
“The relief of physical, social, emotional
and spiritual suffering in children and
their families”
Palliative care seeks to prevent or relieve the physical
and emotional distress produced by a life-threatening
medical condition or its treatment, to help patients with
such conditions and their families live as normally as
possible, and to provide them with timely and accurate
information and support in decision making.
Field & Behrman,.When Children Die. Institute of Medicine, 2003.
Korones. Pediatrics in Review, 2007.
Complex Care
Curriculum
Palliative Care
Abrupt
Transition
CURATIVE
PALLIATIVE
Complex Care
Curriculum
Palliative Care
Gradual Transition
PALLIATIVE
CURATIVE
Complex Care
Curriculum
Palliative Care
Palliative care should be integrated with
curative care.
Symptom ManagementPALLIATIVE
Disease-modifying therapy
Bereavement
Family Support/Advanced Care Planning
CURATIVE
AAP. Palliative Care for Children. Pediatrics, 2000.
When Children Die. Institute of Medicine, 2003.
Complex Care
Curriculum
Palliative Care
Child-focused
Family-Centered
Introduced Early
Integrated
Coordinated
Goal-Directed
Himelstein, 2006; National Hospice and Palliative Care Organization;
The World Health Organization
Complex Care
Curriculum
Palliative Care
Involve family (and child)
in decision-making
Be available in all settings
(home, hospital, school)
Integrated
Offer bereavement support
Team Approach
Complex Care
Curriculum
Palliative Care
Hasten Death
Require DNR Orders
Hospice Care
Palliative care is NOT restricted to hospice
or end-of-life care.
National Hospice and Palliative Care Organization (NHPCO)
Complex Care
Curriculum
Palliative Care
53,000
11,000
9000
Annual Child Deaths
Complex Chronic
Conditions
Complex Chronic
Conditions – non
malignancy
Feudtner et al, 2000; Feudtner et al, 2007; Moody et al, 2011.
Complex Care
Curriculum
Palliative Care
Curative treatment is possible but
may fail
Cancer
Complex congenital heart disease
Unexpected trauma/illness
Extreme prematurity*
Early death is inevitable, but with long
periods of treatment aimed at prolonging
life and maintaining quality of life
Cystic Fibrosis
Dependence on parenteral nutrition
Muscular Dystrophy
Treatment is exclusively palliative
after diagnosis
Trisomy 13 or 18
Severe osteogenesis imperfecta
Severe, nonprogressive but
irreversible disability, with frequent
complications and premature death
Severe cerebral palsy
Neurological sequelae of disease
Hypoxic brain injury
Extreme prematurity*
Himelstein, 2004
NHPCO Standards of Pediatric Palliative Care, 2009
Complex Care
Curriculum
Palliative Care
Genetic/
Congenital
Malignancy
Neuromuscular
60% Feeding Tubes
22% Central Venous Catheters
Cognitive
Impairment
10% Tracheostomy
9% Ventilator Dependent
Other
Gastrointestinal
Respiratory
Feudtner et al, Pediatrics, 2011
Complex Care
Curriculum
Palliative Care
Respiratory
Neurological
Cardiac
Death
Infectious
Gastrointestinal
Complex Care
Curriculum
Palliative Care
Health
Status
Premature
Death
Time (months to years)
Adapted from Klick, Hauer, 2010.
Complex Care
Curriculum
Palliative Care
Conditions for which curative treatment is possible but may fail
Health
Status
Diagnosis
Remission
Relapse
Premature
Death
Time (months to years)
Complex Care
Curriculum
Health
Status
Palliative Care
Conditions where early death is inevitable, but where there may
be long periods of intensive treatment aimed at prolonging life and
maintaining quality of life
Premature
Death
Time (months to years)
Complex Care
Curriculum
Health
Status
Palliative Care
Conditions where early death is inevitable, but where there may
be long periods of intensive treatment aimed at prolonging life and
maintaining quality of life
Crisis
Crisis
Crisis
Premature
Death
Time (months to years)
Complex Care
Curriculum
Health
Status
Palliative Care
Conditions involving severe, nonprogressive but irreversible
disability, vulnerability to health complications and likely
premature death
Unexpected
Event
Crisis
Crisis
Crisis
Premature
Death
Time (months to years)
Complex Care
Curriculum
Health
Status
Palliative Care
Conditions involving severe, nonprogressive but irreversible
disability, vulnerability to health complications and likely
premature death
Crisis
Crisis
Crisis
Crisis
Premature
Death
Time (months to years)
Complex Care
Curriculum
Palliative Care
Health
Status
Medical Support
Interventions
Premature
Death
Time (months to years)
Complex Care
Curriculum
Health
Status
Diagnosis
Delivery of
Prognosis
Palliative Care
Period of
Adjustment
Crises
End of Life
Premature
Death
Time (months to years)
Adapted from Klick & Hauer, 2010
Complex Care
Curriculum
Palliative Care
Anticipate
premature death
Child is suffering
Health status
deteriorating
Palliative care should be introduced early.
Complex Care
Curriculum
Palliative Care
Health
Status
Diagnosis
Delivery of
Prognosis
Period of
Adjustment
Crises
End of Life
Premature
Death
Time (months to years)
Complex Care
Curriculum
Palliative Care
Barriers to Communicating Prognosis
Disease
Family
Provider
Contro, et al, 2004; Davies et al, 2008; Wolfe et al, 2000.
Complex Care
Curriculum
Health
Status
Diagnosis
Delivery of
Prognosis
Palliative Care
Diagnosis
Confirmed
Unknown
Period of
Adjustment
Crises
End of Life
Premature
Death
Time (months to years)
Complex Care
Curriculum
Palliative Care
Prepare
Assess
Deliver
Allow for silence/emotion
Answer questions
Plan
Do not abandon
Klick & Hauer, 2010
Complex Care
Curriculum
Palliative Care
Burden
Benefit
Complex Care
Curriculum
Benefit
Palliative Care
Quality of Life
Clear
Unclear
None
Suffering
Initiative for Pediatric Palliative Care Curriculum.
Complex Care
Curriculum
Palliative Care
Health
Status
Diagnosis
Delivery of
Prognosis
Period of
Adjustment
Crises
End of Life
Premature
Death
Time (months to years)
Complex Care
Curriculum
Palliative Care
Courtesy of HSC Pediatric Center, Washington, DC.
Complex Care
Curriculum
Palliative Care
Always focus on what can be done.
Complex Care
Curriculum
Palliative Care
Parent
Wishes
Provider
Other
families
Wishes
If an intervention is of unclear or marginal
benefit, the family’s wishes should be honored.
Complex Care
Curriculum
Palliative Care
Pain
Aspiration
Artificial nutrition and hydration are medical
treatments that can be withheld or withdrawn.
Fluid
Overload
AAP. Palliative Care for Children. Pediatrics, 2000; NHPCO Policy Statement 2010;
IPPC Curriculum; When Children Die. Institute of Medicine, 2003.
Complex Care
Curriculum
Palliative Care
Withholding
Withdrawing
?
There is no ethical distinction between
withholding and withdrawing an intervention.
Complex Care
Curriculum
Palliative Care
Health
Status
Diagnosis
Delivery of
Prognosis
Period of
Adjustment
Crises
End of Life
Premature
Death
Time (months to years)
Complex Care
Curriculum
Palliative Care
Team Approach
Consistent Caregiver
24 hour availability
Seamless Transition
AAP Policy Statement, 2000.
Complex Care
Curriculum
Palliative Care
Palliative
Care
Physician
Social
Worker
Nurse
Team
Chaplain
Child Life
Psychology
Complex Care
Curriculum
Palliative Care
Care coordination
Basic symptom
management
Conflict resolution
Goal setting
Primary
provider
Team
Ethical challenges
Decision-making
Discharge planning
Bereavement
support
Advanced symptom
management
Quill, Abernathy 2013.
Complex Care
Curriculum
Palliative Care
Suffering
Complex Care
Curriculum
Palliative Care
Pain
Dysautonomia
Secretions
Suffering
Spasticity
Dysmotility
Seizures
Dyspnea
Complex Care
Curriculum
Palliative Care
Pain
Suffering
Complex Care
Curriculum
Palliative Care
Non-opioids
Opioids
Adjuvants
Nonpharmacologic
Complex Care
Curriculum
Palliative Care
Opioid
+/ - Adjuvant
+/- Non-opioid
Non-opioid
+/ - Adjuvant
WHO Guidelines on the Pharmacologic Treatment of Persisting Pain in Children with Medical Illnesses. WHO, 2012.
Diagram adapted from World Health Organization 3-step pain ladder.
Complex Care
Curriculum
Palliative Care
Pain
Comfort
Suffering
Complex Care
Curriculum
Palliative Care
By the
ladder
By the
patient
By the
clock
By the
mouth
Complex Care
Curriculum
Palliative Care
Caregiver
Patient
Barriers to Pain
Management
Provider
Hospital/Health
System
Moody, et al, 2011.
Complex Care
Curriculum
Health
Status
Diagnosis
Delivery of
Prognosis
Palliative Care
Period of
Adjustment
Crises
End of Life
Premature
Death
Time (months to years)
Complex Care
Curriculum
Palliative Care
Minimize Interventions
Minimize Monitoring
Maximize Togetherness
Anticipate Symptoms
Manage Pain
Complex Care
Curriculum
Palliative Care
Opioids
Euthanasia
Doctrine of Double Effect
INTERVENTION
Intervention
Intended
Consequence
Good effect
Unintended
Consequence
Bad Effect
Foreseen
Initiative for Pediatric Palliative Care Curriculum
Complex Care
Curriculum
Palliative Care
Is the patient suffering?
Does the treatment relieve this
suffering?
Is it your intent to relieve pain and
suffering?
Are you providing only that which is
necessary?
Treating pain at end-of-life with opiate
medications is not euthanasia.
Complex Care
Curriculum
Palliative Care
HOSPITAL
HOME
HOSPICE
Feudtner, 2002; Moody et al; 2011
Feudtner et al, 2007
Complex Care
Curriculum
Palliative Care
Complex Care
Curriculum
Palliative Care
Autopsy?
Organ donation?
Funeral arrangements
Memory making
Ongoing bereavement
support
Complex Care
Curriculum
Palliative Care
Photos courtesy of Rebecca Simonitsch
Published first in CHIPPS (Childrens Healthcare and Palliative Care Services) Newsletter, 2010
Complex Care
Curriculum
Palliative Care
• Lack of acceptance
• Lack of agreement
• Fear of failure
• Unclear prognosis
• Lack of experience
• Reimbursement
• Lack of providers
Physician
Family
System
Hospital
• Limited Resources
Complex Care
Curriculum
HOSPICE
Palliative Care
Lack of Pediatric
Providers
Conflicting Goals
Limits of
Medicare Model
Freibert, NHCPO Facts & Figures, 2009
Moody et al, 2011; Liben et al, 2008
Complex Care
Curriculum
Palliative Care
Affordable Care Act
Palliative
Hospice
Concurrent
Care
Curative
Curative
Concurrent Care for Children Requirement: Implementation Guidelines. NHCPO, 2011.
Complex Care
Curriculum
Palliative Care
Palliative and curative care should be
integrated
Palliative care is NOT restricted to
hospice or end-of-life care
Palliative care should be introduced
early
Communicate prognosis without mixed
messages or euphemisms
Complex Care
Curriculum
Palliative Care
When an intervention is of unclear or
marginal benefit, the family’s wishes
should be honored
Always focus on what CAN be done
Artificial nutrition and hydration can
be withheld or withdrawn in certain
cases
There is no ethical distinction between
withdrawing and withholding an
intervention
Complex Care
Curriculum
Palliative Care
Children with complex medical conditions
suffer from many types of pain
Pain management should be “by the
ladder, by the clock, by the mouth and by
the patient”
Pain management at the end of life, when
adhering to the Doctrine of Double Effect,
is not considered euthanasia
Palliative care continues beyond the
death of the child – “Do not abandon”
Complex Care
Curriculum
Palliative Care
Recommended Reading
Korones, DN. Pediatric Palliative Care. Pediatrics in
Review. 2007; 28: e46-56.
Klein SM; Saroyan JM. Treating a child with a lifethreatening condition. Ped Annals. May, 2011.
Klick JC, Hauer J. Pediatric Palliative Care. Curr Probl
Pediatr Adolesc Health Care. 2010; 40: 120-151.
Complex Care
Curriculum
Palliative Care
Online Resources
Initiative for Palliative Care Curriculum
www.ippcweb.org
Free access to modular curriculum with registration
National Hospice and Palliative Care Organization
www.nhpco.org
District of Columbia Palliative Care Collaboration
http://www.dcppcc.org/professionals/index.html
Complex Care
Curriculum
Palliative Care
Pain References
Friedrichsdorf SJ, Kang TI. The management of pain in children with life-limiting
illness. Ped Clin N Am. 2007; 54: 645-72.
Klick JC, Hauer J. Pediatric Palliative Care. Curr Probl Pediatr Adolesc Health Care.
2010; 40: 120-151.
Moody K; Siegel L; Scharbach K; Cunningham L; Cantor M. Pediatric Palliative Care.
Primary Care Clin. 2011; 3: 327-361. – contains pediatric palliative care formulary
IPPC Module 2: Pain Management
http://ippcweb.org/module2.asp
Free registration; download facilitator’s guides for more information on pain
management.
World Health Organization Guidelines on Persisting Pain for Children.
Available at:
http://www.who.int/medicines/areas/quality_safety/guide_perspainchild/en/
Complex Care
Curriculum
Palliative Care
Acknowledgements
The authors would like to thank Dr. Shana Jacobs and
Dr. Miriam Bloom for their time in reviewing this
module as content experts.