Integrated Palliative Care Practices for Children with Complex Chronic Conditions Timothy Carroll, MD, FAAP Assistant Professor of Pediatrics Section of Critical Care, Department of Pediatrics University 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 Palliative Care? 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 chronic conditions and 55,000 children ages 0 to 19 die annually years 25.3% Neonatal 34.3% years 7.6% 5-9 years 6.4% Postneonatal 16.9% 1-4 years 9.6% IOM report 2003

Percentage of total childhood deaths by major causes Placental Cord Membranes 2% Congenital Anomalies 12% Complications of Pregnancy 2% Short Gestation 8% SIDS 5% Respiratory Distress 2% Heart Disease 2% Unintentional Injuries 22% Homicide & Suicide 8% Cancer 4% 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 and symptoms of patients receiving PPC services Feudtner et al, Pediatrics 2011

Drugs received by patients receiving 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. Subspecialty Palliative Care Healthy/Functional Status Over Time Risk of Suffering Threshold Primary Palliative Care Subspecialty Palliative Care

Who provides PPC services? Core Services Physician Nurse Coordinator Psychosocial Clinician Key Additions Chaplaincy Expressive Therapists Bereavement Coordinator Collaborative Services Pain Services Alternative therapies Psychiatry/ Psychology Hospice Services

Where are PPC services offered? Clinic Hospital Patient and Family Home 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 hope 2.Child must be terminally ill or at the end of life 3.Must have DNR to have hospice care 4.Only for children with cancer 5.Must abandon all disease-directed treatment

Myths in Palliative Care and Hospice 6.Must abandon primary treatment team 7.Must move to a different unit/location 8.Will die sooner or lose hope if PC is introduced 9.All families want end of life at home 10. 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, FAAP Assistant Professor of Pediatrics Section of Critical Care, Department of Pediatrics University of Oklahoma School of Medicine