1. Show Me The Money: Benjamin S. Wilfond MD Director, Treuman Katz Center for Pediatric Bioethics Children’s Hospital and Regional Medical Center Professor and Head, Division of Bioethics Department of Pediatrics, University of Washington Financial Considerations in Responding to Parental Requests for Medical Interventions

2. Gabriel – Chapter III 6 mo old boy with Campomelic Dysplasia – Severe chest wall restriction – Short stature – Profound developmental disability – Ambiguous genitalia At “special care” unit in hospital – Trach, g-tube, ventilator Pediatric residents would ask on rounds: – Is this in Gabriel’s interest? – Aren’t there limits on how we should use available technology? – Why are we spending so much money on this child? Wouldn’t the money be better spent on immunizations?

3. No RolePrimary Role Clinical decisions for one patient Policy decisions for society Role of cost In health care decision-making

4. What’s cost got to do with it? Cost remains an important factor even in clinical decisions – “bump on the head” Cost may not always be the determinative factor for policy decisions – Erectile dysfunction In either setting, we should be careful not to conflate cost with the assessment of benefits

5. Psychosocial benefits of medical interventions 6 year soccer player – MRI for ankle sprain – Ritalin for soccer practice 6 month old ex-30 week premature infant – Apnea monitor for reflux related choking spell – Orthotic helmet for flat head

6. Is it appropriate to use medical interventions to address psychosocial problems? Places the child “at risk” instead of addressing the social problem Reinforces the social reasons for the problem Should not spend money on medical fixes for social problems rather than spending the money on the social problems Not “medically necessary”

7. Psychosocial benefits of medical interventions 6 year soccer player – MRI for ankle sprain – Ritalin for soccer practice 6 month old ex-30 week premature infant – Apnea monitor for reflux related choking spell – Orthotic helmet for flat head

8. Psychosocial benefits are an integral part of medical practice Historically, the primary value of medicine has been to provide diagnosis and prognosis – Absent treatment, these are psychosocial benefits Currently, heath technology assessments prioritize “patient related” outcomes “Quality of life” is a psychosocial issue

10. Impact of medical interventions on quality of life in children with developmental disability 6 week old with Trisomy 18 – VSD repair – Cleft palate repair 6 month old with campomelic dysplasia – Assisted ventilation – Dialysis/Kidney transplant

11. Benefits & Risks Clinical Psychological Social Perspective Child Family Health care providers Health care institutions Private Payers Public Payers Society Resources Financial Time Facilities Personnel Equipment Opportunity costs Organs Balancing benefits and burdens

12. Balancing benefits to the child with burdens Benefits to the child is not worth the burdens to the child Benefits to the child is not worth the burdens to the family Benefits to the child is not worth the burdens to society

13. Policy decisions and quality of life Quality adjusted life years (QALY) – Tool to make comparison between clinical interventions Impact of intervention on length of life Impact of intervention on quality of llfe – Length of life X Quality of life = QALY 10 X 1 = 10 QALYs 20 X.3 = 6 QALYs Can calculate the cost per QALY – Treatment A costs $10,000 per QALY – Treatment B costs $40,000 per QALY

14. QALYs and Disability How should the quality of life with a disability be described? – Requiring a wheel chair for mobility.1 or.5 or.9 Who makes this assessment? – Person using wheel chair or policy maker? Impact of social context to assess QALY – Wheel chairs without ramps and grab bars?

15. Gabriel – Chapter I Two week old boy with Campomelic Dysplasia – “lethal dwarfism” – Parents refuse to withdraw ventilator Parents only speak Spanish – Are very religious – Are waiting for a miracle Care conference to help parents come to a reasonable decision about this child with a lethal condition

16. Parental requests for treatment of “lethal” condition Which diseases are lethal? – Asthma – Diabetes – Cystic Fibrosis – Down Syndrome – Trisomy 18 – Tay-Sachs – Campomelic dysplasia – Anencephaly What is lethality? – Likelihood of death – Duration of life – Impact of treatment on survival – Quality of life before death – Ability to have children (Genetic lethality)

17. Lethality is the pediatric expression of futility Concept emerged in the 1990’s to identify limits to some patient and family expectations of all treatments, for all patients, at all costs Used by some physicians, ethics committees, and courts to “say no” Appears to have a “medical” orientation – “Quantitative” futility Physiologically implausible Statistically implausible

18. The futility of futility Converse of Baby Doe – Down Syndrome – Spina Bifida – Limitations of parental refusals for treatment of children with moderate developmental disabilities Famous pediatric futility cases – Baby K (Anencephaly) – Emilio Gonzalez (Leigh Encephalopathy) “Qualitative” futility – Not worth the effort to children, families, providers, society

19. “Lethality” is a normative concept “Lethality” medicalizes a normative statement about “quality of life” Providers may not be comfortable stating views about “quality of life” and the “value” of children with profound developmental disabilities Other surrogates for “quality of life” include “suffering”, “family burden” and “cost” Unexamined normative views about children with profound developmental disabilities can influence – Provider attitudes – Information conveyed to parents

20. Answering Gabriel’s residents who worry about the cost of care Collective decision-making – “Bedside” rationing does not usually result in reallocation of resources to others in need – Insurance coverage decisions (esp. medicare/mediciad) are a form of collective decision making Vulnerability and dependency – Financial cost of care on society may be less than the social cost of withholding care on vulnerable populations Justice – “Doesn’t this child deserve the same care that you would expect for your own child?”

21. “Don't want no short people round here” Financial concerns are more acceptable than saying that this child’s life is not worth living Most of society has little contact with children with permanent dependence due to profound developmental disability Attitudes of the public and healthcare providers about such children may not be as progressive as we might believe We may evaluate such a life from our own cognitive perspective and not from the perspective of the child or the family who loves them

22. A productive member of society

23. Gabriel – Chapter II Care meeting to discuss whether continued assisted ventilation (and tracheostomy) was appropriate Parents asked if assisted ventilation would cause suffering

24. What are the limits for costs? What resources should be provided for children who need assistance with ventilation? – A home ventilator? A portable home ventilator? – Home Nursing? How much nursing? Fiscal policy decisions should be made through a deliberative process – We just haven’t figured out how to do it well

25. Gabriel – Chapter IV Discharged from hospital at 9 months Weaned from ventilator at 4 years Trach removed at 6 years Trach/vent resumed at 8 years Gabriel is an important member of his extended family

26. Parental decision-making for children with permanent dependence due to profound developmental disability Strong social interest in supporting the wishes of parents to provide care – Respects their role as parents – Respects the value of their children Special commitment to care for the most dependent children in our society Even with cost constraints, we should be careful about using cost as a primary justification for how we decide about the care of children with profound developmental disabilities