1. Iowa Physician Orders for Scope of Treatment (IPOST): Out of Hospital DNR Orders for Terminally Ill Children A. Paige Volk, MD August 13, 2012

2. Objectives Patient stories –Until 7/1/2012, Iowa’s children with terminal illness were at risk for unwanted resuscitation at end of life Update on new Iowa law: Iowa Physician Orders for Scope of Treatment –UICH palliative care committee part of a state-wide coalition committed to protecting the end of life wishes of medically fragile or terminally ill children How do I use the IPOST form?

3. UICH Patient Stories PW, 2 yo with unknown neurodegenerative disorder –Requested OOH DNR order from PICU physician JC, 7 mo with Spinal Muscular Atrophy type I –Home with OOH DNR wishes documented by Pediatric Neurologist –EMS activated for respiratory arrest, died after 3 week hospitalization

4. UICH Patient Stories AD, 2 yo with hypoxic ischemic encephalopathy → recurrent acute life threatening respiratory events –Family requested OOH DNR, made aware of current policy –Died at home with hospice services CW, 5 yo with unknown neurodegenerative disorder –Recently moved to Iowa from Wisconsin –Carried OOH DNR with Medic Alert bracelet in Wisconsin –Local pediatrician signed IA DPH OOH DNR form in error –Family believed that child was protected from unwanted resuscitation

5. UICH Pediatric Faculty Members (N=54) –94% of respondents think it would be beneficial to explore a change in Iowa’s OOH DNR policy IA Chapter of American Academy of Pediatrics Members (N=42) –95% of respondents support a change in OOH DNR policy for pediatric patients in Iowa IA EMS Providers (N= 190) –93% of respondents indicate that a change in Iowa’s OOH DNR policy would be beneficial UICH, IA AAP and EMS Survey Results

6. IPOST Iowa Physician Orders for Scope of Treatment Intention: Include provisions in Iowa code relative to existing DNR/ advance directives Recipients: Intended for individuals who are frail and elderly or who have a chronic, critical medical condition or a terminal illness Caveat: Does not change current definition of “Qualified patient,” which is a person over age 18 years with a terminal condition

7. IPOST Iowa Physician Orders for Scope of Treatment How are children affected? –Children in Iowa have never had DNR or advanced directive protections –For children, no other orders/laws supersede IPOST –IPOST is age-nonspecific, allows a person to communicate their preferences at end of life –IPOST includes sections on: Resuscitation; General Scope of Treatment; Artificial Nutrition; Etc…

8. IPOST FORM Iowa Physician Orders for Scope of Treatment

10. UICH Palliative Care Group Educational Initiative: Facts Document Endorsed by: UICH EMSC

11. UICH Palliative Care Group Educational Initiative: FAQ Document Endorsed by: UICH EMSC

12. Questions and Discussion http://www.idph.state.ia.us/ipost/Form.aspx

13. Interested Parties/Affiliations Supporting IA OOH DNR Educational Initiative: American Academy of Pediatrics (AAP) -- Tess (Maria) Barker, Executive Director -- Debra Waldron, MD (IA Chapter—AAP president) Child Health Specialty Clinic (CHSC) -- Debra Waldron, MD -- Barbara Kahl, Program Manager Emergency Medical Services for Children (EMSC) -- Katrina Altenhofen, MPH (State Director-IDPH Bureau of EMS EMSC Program) Iowa Association of County Medical Examiners (IACME) -- Dennis Mallory, MD (Board Member) -- Marcus Nashelsky, MD (UIHC Medical Examiner) UI Children’s Hospital -- Paige Volk, MD (Pediatric Critical Care) -- Dianne Atkins, MD (Pediatric Cardiology) -- Janine Petitgout, ARNP (Continuity of Care, Peds Palliative Care Director) -- Sheila Frascht, RN (Nurse Clinical Specialist, Peds Palliative Care)