Criteria for Pediatric Palliative care

Question 1

General Referral Criteria

Answer 1

Automatic
Conflicts regarding use of medical nutrition/hydration in cognitively impaired, seriously ill, or dying patients

Suggested
New diagnosis of life-limiting/threatening condition

Three or more hospitalizations within six 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 home-going needs Prolonged hospitalization for more than three weeks
Need for hospice resource utilization

Question 2

Malignant Disease Criteria

Answer 2

Automatic
Progressive metastatic cancer
Bone marrow/stem-cell transplant
Diffuse intrinsic pontine glioma Stage IV neuroblastoma
Relapsed malignant disease following stem-cell/bone marrow transplant

Suggested
Any newly diagnosed malignant disease with an EFS of

Any relapsed malignant disease
Metastatic solid tumors

New diagnosis with complex pain or symptom management issues

Question 3

Pulmonary Criteria

Answer 3

Pulmonary Criteria

Automatic
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

Suggested
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

Question 4

Genetic Criteria

Answer 4

Automatic
Trisomy 18, 13, 15 Asphyxiating thoracic dystrophy
Severe forms of osteogenesis imperfecta (type 3 or 4) Potter syndrome
Epidermolysis bullosa

Suggested
Rett’s syndrome

Other rare chromosomal anomalies with known poor neurologic prognosis

Question 5

Neurologic/Neuromuscular/Neurodegenerative Criteria

Answer 5

Automatic
Progressive neurodegenerative conditions
Muscular dystrophy
Spinal muscular arophy
Severe traumatic brain injury
Persistent vegetative state
Batten disease
Metachromatic
Leukodystrophy/ALD

Brain reduction syndromes:
Anencephaly
Hydranencephaly
Lissencephaly
Severe schizencephaly

Suggested
Static encephalopathy
MRCP with comorbidities
Severe anoxic brain injury (not neonatal)

Question 6

Metabolic/Inclusion Disease Criteria

Answer 6

Automatic
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

Suggested
Severe mitochrondrial disorder

Severe metabolic disorders for which BMT is a therapeutic consideration

Question 7

Infectious Disease Criteria

Answer 7

Automatic
HIV/AIDS resistant to antiretrovirals Severe combined immune deficiency

Suggested
Congenital CMV/toxoplasmosis with neurological sequelae Severe encephalitis
Severe immunodeficiency syndromes, particularly those for which BMT is a consideration

Question 8

Orthopedic Criteria

Answer 8

Automatic
Thanatophoric dwarfism

Suggested
Severe progressive scoliosis

Severe forms of dwarfism

Question 9

Renal Criteria

Answer 9

Automatic
Neonatal polycystic kidney disease

Suggested
Renal failure, not transplant candidate

Question 10

Gastrointestinal Criteria

Answer 10

Automatic
Multivisceral organ transplant under consideration Biliary atresia
Total aganglionosis of colon

Progressive hepatic or uremic encephalopathy

Suggested
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)

Question 11

Neonatal Criteria

Answer 11

Automatic
Extreme prematurity with concomitant severe BPD, Grade IV IVH, PVL, etc.
Severe birth asphyxia

Hypoxic ischemic encephalopathy (moderate to severe)

Suggested
VLBW infants

Question 12

Cardiac Criteria

Answer 12

Automatic
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

Suggested
Complex congenital heart disease ECMO candidate
Severe myocarditis

Question 13

Intensive Care Criteria

Answer 13

Automatic
Prolonged or failed attempt to wean mechanical ventilation Multiorgan system failure
Compassionate extubation Severe head injury following NAT

Suggested
PICU stay longer than two weeks

Irreversible brain injury that will impact functional status Immersion injury