PEDIATRIC PALLIATIVE CARE:WHY AN INTERNIST NEEDSTO SEE PEDIATRIC PATIENTS

Christian Sinclair, MD, FAAHPM – KC Hospice

Conscillience

Pediatrics Adult Palliative Care

Hospital

• Consult• Designated beds

Hospice-based

• Dedicated team• Adult team w/ exp

Pediatric Hospice

• Independent• Dedicated team

Pall

Palliative Care

Curative Care/Disease Modifying

Patient Family

Medical System

Patient Family

Medical System

Life threatening +

curative potential

Cancers

Organ Failure

Inevitable premature

death

Cystic Fibrosis

Genetic disorders

Progressive conditions –

curative potential

Neuro-degenerati

ve

Batten Disease

Irreversible but non-

progressive

Cerebral palsy

San Filippo

Life threatening +

curative potential

Cancers

Sepsis

Inevitable premature

death

Advanced Lung

Cancer

Pancreatic Cancer

Progressive conditions –

curative potential

ALS

Dementia

Irreversible but non-

progressive

Stroke

COPDCHF

Children who die

Chronic complex conditions

Life-threatening

Life-limiting

Pediatric Palliative Care

Peds Deaths Peds Hospice

All Children1-19yo

•Accidents•Assault•Malignancy•Suicide•Congenital•Chromosomal•Cardiac•Neurologic

All Children1-19yo w/CCC

•Malignancy (43%)•Neuromuscular (23%)•Cardiac (17%)

All Infants

•Congenital•LBW•SIDS•Birth complications•Injury

All Infants w/CCC

•Cardiac (32%)•Congenital (26%)•Pulmonary (17%)•Neuromuscular (14%)

Percentage of Deaths at Home

Age Group

1989 2003

0-19 years 10% 18%

Infants 5% 7%

1-9 years 18% 31%

10-19 years 18% 32%

Contacts

University of Kansas Medical Center Kathy Davis, PhD Karin Porter-Williamson, MD

Kansas City Hospice / Carousel Christian Sinclair, MD, FAAHPM Patty Poore, RN, CHPN

1 •I am seriously ill

2 •I am seriously ill but will get better

3 •I am always ill but will get better

4 •I am always ill but will not get better

5 •I am dying

0-2 years•Awareness of separation, tension•Provide physical comfort, familiar people and objects

2-6 years•Death as reversible, sleeping, magical thinking•Concrete information, dispel misconceptions

7-12 years•Death as final, personal, unpredictable•May want graphic information•Inquire for fears, encourage access to peers

12+ years•Death as final, universal, but distanced•May address unrealized plans, explanations•Allow for emotions and privacy, support independence

Setting Privacy, Involve others, Sit down, Attentive, Calm, Listening, Available

Perception Before you tell, ask

Invitation Respect the patient’s right to know or refuse information

Knowledge Use lay language, avoid technical terms, give in small amounts

Empathy Listen for and identify emotions

Strategy and Summary Make clear expectations about the plan

Assess Symptom

Treat

Assess Efficacy

Assess Side Effects

Respiratory depression

Constipation

Addiction

Opioid Myths

Key CHiPPS Recommendations Sole admission criteria to pediatric palliative care = pt not

expected to survive to adulthood Interdisciplinary approaches address the whole person and

family Provisions of support for staff who care for children with life-

limiting illness Post-death care needs to be integrated with health care

design and funding Financial incentives for pediatric palliative care must be

developed Support for pediatric assent and the mature minor doctrine Community education regarding pediatric palliative care and

DNR orders http://bit.ly/DVtzB

Pediatrics Adult Palliative Care

Conscillience

Key Reading

• Friebert S. NHPCO Facts and Figures: Pediatric Palliative and Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, April 2009.

• When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families. 2003 Board on Health Sciences Policy.

• Oxford Textbook of Palliative Care for Children• The Hospice and Palliative Medicine Approach

to Caring for Pediatric Patients – UNIPAC series - AAHPM

Online Resources for Pediatric Palliative Care

Fast Facts: http://bit.ly/cj9UJ NHPCO Pediatric Palliative Care

Standards: http://bit.ly/4qpV9 NHPCO Pediatrics Facts & Figures:

http://bit.ly/Dj7oX Pallimed: http://www.pallimed.org