1. Moderator: Russell K. Portenoy, MD Panelists: John M. Saroyan, MD Debra F. Fox, APRN, FNP-BC, CHPN Katherine Leonard, MD Erica Rosenbaum, LMSW

2. 11 month old female Epidermolysis bullosa, junctional type Extensive skin & gastrointestinal lesions Failure to thrive Significant developmental delay PE: Extensive desquamation to arms, legs; scapulae and sacrum Comfort care; DNR

4. Pain management Methadone 0.1 mg po tid +Morphine prn Parental concern over addiction Principle of double effect Dressing changes Management of other symptoms Pruritis, irritability, dyspnea Feedings Medications Formulations with and without feeding tube

5. Psychosocial support in Recessive autosomal inheritance Well, unaffected sibling Multiple loss bereavement Home health nursing + palliative care Opportunities for collaboration with industry and national organizations

6. 10 y/o girl ALL s/p standard chemotherapy, not a BMT candidate, Phase I and II trials exhausted Transfusion dependent Referred to hospice on discharge from hospital

7. Symptom control pain, nausea, dyspnea, fear and anxiety, insomnia Goals of care transfusion, feeding, antibiotics, code status Transition to Home Family, Patient and Community Support at end-of-life and through bereavement

8. Brief overview ~. State and Federal guidelines ~. Incorporating Pediatric hospice and palliative care within the guidelines of concurrent care

9. 6 y/o boy temperature and blood pressure abnormalities dystonic posturing diaphoresis and erythroderma severe neurologic impairment following meningitis/encephalitis generalized tonic-clonic seizures Multiple ED visits ICU admissions over three years with multiple prolonged intubations, sepsis work-up (including spinal taps), many pneumonia

10. Diagnosis Neuroirritability Treatment Clonidine Clonazepam Diazepam PR Goals of Care and Home Services