integrated palliative care practices for children with complex chronic conditions timothy carroll,...
TRANSCRIPT
Integrated Palliative Care Practices for Children with
Complex Chronic Conditions
Timothy Carroll, MD, FAAPAssistant Professor of Pediatrics
Section of Critical Care, Department of PediatricsUniversity of Oklahoma School of Medicine
Objectives
• Define the epidemiology of chronic care in pediatrics and the mission of pediatric palliative care (PPC)
• Define parental expressed needs for a pediatric palliative care service
• Describe how palliative care is integrated into modern medical care model
• Evaluate myths and assumptions about PPC
What is Pediatric PalliativeCare?
• Prevent, identify and treat children suffering with serious illnesses
• Provide resources for families and teams that care for these patients
• Appropriate at any stage of illness– Can be used together with disease-directed
treatment
Epidemiology of Life-Threatening Conditions
• Each year in the pediatric population:– Over 50,000 die in the US– 500,000 – 1,000,000 suffer from complex, chronic
conditions– 10,000+ diagnosed with cancer• Leading cause of disease-related death
– 40,000 diagnosed with congenital heart disease– 80,000+ born severely premature
500,000 children live with complex chronicconditions and 55,000 children ages 0 to 19
die annually
15-19 years
25.3%Neonatal34.3%
10-14 years7.6%
5-9 years6.4%
Postneonatal16.9% 1-4 years
9.6%IOM report 2003
Percentage of total childhooddeaths by major causes
Placental CordMembranes
2%Congenital Anomalies
12%Complications of
Pregnancy2%
Short Gestation8%
SIDS5%
Respiratory Distress2%
Heart Disease2%
Unintentional Injuries22%
Homicide & Suicide8%
Cancer4% Other
33%IOM report 2003
Demographics of a Subspecialty Service
• Needs are even among all age groups• Age distribution:– < 1 month: 5%– 1 to 11 months: 13%– 1 to 9 years: 37%– 10 to 18 years: 30%– > 19 years: 16%
Tasks Involved in Pediatric Palliative Care
• Suffering requires communication: – Identifying problems and challenges– Understanding illness– Exploring hopes– Setting goals– Advanced care planning– Making decisions
Tasks Involved in Pediatric Palliative Care
• Suffering necessitates care coordination: – Collaborating with other providers/specialties– Facilitating logistics of medical and social needs
while inpatient and if there is a planned transition to home
– Partnering with available community programs– Identifying community resources
Tasks Involved in Pediatric Palliative Care
• Suffering requiring interventions:– Physical suffering– Psychosocial suffering– Spiritual suffering– Bereavement– Family support– Team support– Community support
Parental Recommendations of Provision of Good Palliative Care
Parental Recommendations
• Courtesy of Justin Baker, MD, FAAP, FAAHPM– St. Jude children’s research hospital
• Chief, Division of Quality of Life and Palliative Care
• Attending physician – Quality of life service• Director – Hematology/Oncology fellowship
program
Recommendation #1
Ensure that children receive the best possible
treatment of disease and have the best possible
quality of life, always hoping for the best
possible outcome
Recommendation #2
Provide effective symptom control
Recommendation #3
Provide relationship-based care
Recommendation #4
Empower families with useful and reliable information
Recommendation #5
Support children and families in the process of making difficult care decisions
Recommendation #6
Facilitate care coordination
Recommendation #7
Ensure that children with progressive and incurable illness experience a comfortable and
peaceful death
Recommendation #8
Provide bereavement support for surviving family members and hospital staff
Does Integrating Palliative Care Make a Difference?
• Better quality of life• Less anxiety and depression• Fewer hospital resources• Less chemo last 2 months of
life• Lived longer
Does Integrating Palliative Care Make a Difference?
• Providers had less anxiety and depression• Earlier palliative care had greater impact
Family Experience as Context
• Stress and anxiety• Multiple demands• High degrees of uncertainty• Balancing hopes for a good outcome with
fears of a bad one: death• Pressure the last months to years can erode
resilience
Signs andsymptoms ofpatientsreceiving PPCservices
Feudtner et al, Pediatrics 2011
Drugs received by patientsreceiving PPC
Feudtner et al, Pediatrics 2011
Integrated Practice
Integrated Practice #1
Understand the illness experience for the perspective of the child and family before establishing goals and offering treatment
Integrated Practice #2
Establish prognosis and communicate it clearly and effectively
Integrated Practice #3
Establish goals of care in collaboration with the patient and family and provide goal-directed
treatment
Integrated Practice #4
Prepare patient/family for the possibility of incurable illness, disease progression and death
Integrated Practice #5
Measure symptoms and level of distress and address symptoms of greatest concern
Integrated Practice #6
Facilitate interdisciplinary care and coordination
Integration of the service is critical!
Integration Tasks of a Subspecialty PPC Service
• Symptom Management– Cognitive impairment (47%)– Seizures (25%)– Dyspnea (22%)– Pain (31%)• Somatic (22%)• Visceral (12%)• Neuropathic (10%)
Tasks of PPC Service
• Other tasks (42%)– Communication (48%)– Decision making (42%)– Care coordination (35%)– Transition to home (14%)– Limiting interventions: DNR/DNAR (12%)– Bereavement (11%)– End of life recommendations (9%)
Primary vs. SubspecialtyPalliative Care
Healthy/Functional Status Over Time
Risk of Suffering Threshold
Primary Palliative Care
Subspecialty PalliativeCare
Who provides PPC services?
Core Services
Physician
NurseCoordinator
PsychosocialClinician
KeyAdditions
Chaplaincy
ExpressiveTherapists
BereavementCoordinator
CollaborativeServices
Pain Services
Alternativetherapies
Psychiatry/Psychology
HospiceServices
Where are PPC servicesoffered?
Clinic
Hospital Patient
and
FamilyHome
and
Community
Hospice
Changing Attitudes
• Early integration of palliative care• Care should be integrated at diagnosis– Provide focus of disease and suffering in all stages– Provides necessary support to help families cope– Prevents perception of transition in care or
abandonment
Integrating Subspecialties Early
• Prevents disruptive transition to new care team at worst possible time– Decreases feelings of abandonment
• Minimizes fragmentation of care• Provides umbrella of support throughout
entire draining process– Additional support for primary team • Time, resources, self-care, prevention of compassion
and fatigue
Early Integration of Palliative Care
• Subspecialty care is integrated with primary team– Keeping PMD or primary specialist in control
• Disease modifying and palliative care strategies can work together and be synergistic– Better symptom and psychosocial management may
improve tolerance of treatments and outcomes– Palliation and restorative strategies both aim to
improve function
Early Integration
• Allows patient and family self-determination about treatment options
• Empowers parents to be capable of maintaining dual goals of care concurrently
• Health care justice– Access to emerging best practice
Integration Strategies
• Prioritize symptom management and find a symptom to invite the PPC team to treat
• Consider PPC as adjunct medical specialty that is part of package of service– Not as a optional service
Integration Strategies
• Forget idea of prognosis entirely• Resource management for complex needs of
family and community• Preventative and anticipatory guidance for
children with life-threatening conditions
Integration Strategies
• Honest appraisal of “doing to” vs. “doing for”• Think about list of applicable diagnoses– Acknowledge likelihood of cure– Acknowledge burdensome treatment course
Integration Strategies
• Think about appropriate time points– Bad news/overwhelmed at diagnosis– Phase I enrollment– Relapse/recurrence– Serious complications– ICU admissions/transfers– Change in technology (new trach)– Listing for transplant
Integrated Practice #7
In the presence of advancing illness, place greater emphasis on communication, comfort
and quality of life
Integrated Practice #8
If death is expected, determine whether communication with the child about it is needed
and parents should be supported throughout the process
Integrated Practice #9
Plan the location of death
Myths in Palliative Care and Hospice
1. Palliative care = hospice = giving up hope2. Child must be terminally ill or at the end of
life3. Must have DNR to have hospice care4. Only for children with cancer5. Must abandon all disease-directed treatment
Myths in Palliative Care and Hospice
6. Must abandon primary treatment team7. Must move to a different unit/location8. Will die sooner or lose hope if PC is
introduced9. All families want end of life at home10. Opioid administration causes respiratory
depression and quickens death
Language of PPC
• Interdisciplinary• Life-threatening– Not just life limiting
• Children range in age– Prenatal to young adult
• Family core to decisions– Biological– Adoptive– Foster– Other
Language of PPC
• Surrogate decision making• Benefits and burdens• Goals of care• AVOID: Withdrawal of support/care/treatment• Transition to focus on quality and comfort
Note About Hospice
• Only one component of palliative care• An insurance benefit associated with a terminal
prognosis– Defined as having potential for death in <6 months
• Services and resources centered on end-of-life issues– In-home assessment for pain/symptom management– Ongoing psychosocial and decision-making support– Grief and bereavement support
Summary
• Integration of palliative care improves quality of pediatric oncology care– Decision making– Symptom control– Emotional, social and spiritual care– Care coordination and continuity– End-of-life care– Bereavement care
Pearls
• Refer to PPC early• Focus on the relief of suffering• Consider careful use of language
Pearls
• Additional referral points– Complex, higher risk situations– Conflicts– Communication challenges
• PPC works with the primary team to enhance care
• Define goals for care
Pitfalls
• Confusing PPC with hospice or end of life care• Asking families to choose PPC when they may
not understand what it is• Using language that suggest “giving up” or loss
of hope
Pitfalls
• Confusing PPC with hospice or end of life care• Asking families to choose PPC when they may
not understand what it is• Using language that suggest “giving up” or loss
of hope
Pitfalls
• Waiting so long to refer that suffering increases
• Using terms like “withdrawing” or “withholding” care
Integrated Palliative Care Practices for Children with
Complex Chronic Conditions
Timothy Carroll, MD, FAAPAssistant Professor of Pediatrics
Section of Critical Care, Department of PediatricsUniversity of Oklahoma School of Medicine