1. Treuman Katz Center for Pediatric Bioethics - 2009 Conference The Adolescent’s Role in End-of-Life Decision Making Ethics versus Policy Lainie Friedman Ross, MD, PhD Carolyn and Matthew Bucksbaum professor of Clinical Ethics Professor, Depts of Pediatrics, Medicine, Surgery & the College Associate Director, MacLean Center for Clinical Medical Ethics University of Chicago Carolyn and Matthew Bucksbaum professor of Clinical Ethics Professor, Depts of Pediatrics, Medicine, Surgery & the College Associate Director, MacLean Center for Clinical Medical Ethics University of Chicago

2. Treuman Katz Center for Pediatric Bioethics - 2009 Conference OBJECTIVES To clarify the roles of the parents, the minor, and the state for decisions regarding effective life-saving treatment for childrenTo clarify the roles of the parents, the minor, and the state for decisions regarding effective life-saving treatment for children To consider the roles of the parents, the minor, and the state for decisions where effective life-saving treatment does not existTo consider the roles of the parents, the minor, and the state for decisions where effective life-saving treatment does not exist To consider whether and when reasons matterTo consider whether and when reasons matter To clarify the roles of the parents, the minor, and the state for decisions regarding effective life-saving treatment for childrenTo clarify the roles of the parents, the minor, and the state for decisions regarding effective life-saving treatment for children To consider the roles of the parents, the minor, and the state for decisions where effective life-saving treatment does not existTo consider the roles of the parents, the minor, and the state for decisions where effective life-saving treatment does not exist To consider whether and when reasons matterTo consider whether and when reasons matter

3. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Decision Making by a Competent Adult Adult’s Preferences YESNO PHYSICIAN’S Actions TREATDo NOT treat; try to convince but in the end, respect patient’s wishes. The focus is on the right of a competent adult to accept or refuse any treatment, including life- saving therapy. Based on autonomy and the principle of informed consent. Can you override a competent adult’s decision? Only if you can prove that he lacks decision making capacity.

4. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Decision Making in Pediatrics Children are presumed incompetent and unable to make decisions. Parents are presumed to be the decision makers. –Parents are guided by the “Best Interest” principle. Parental authority can be overridden if the state believes that the parents are abusive or neglectful. –State has the authority to ensure that the child’s “Basic Needs” or “Basic Interests” are met. Concept of basic interests by John Rawls. Children are presumed incompetent and unable to make decisions. Parents are presumed to be the decision makers. –Parents are guided by the “Best Interest” principle. Parental authority can be overridden if the state believes that the parents are abusive or neglectful. –State has the authority to ensure that the child’s “Basic Needs” or “Basic Interests” are met. Concept of basic interests by John Rawls.

5. Treuman Katz Center for Pediatric Bioethics - 2009 Conference New trend to show greater respect for minor refusals, particularly when parents agree with them. In re E.G. (IL, 1989) [17 years] Billy Best (MA, 1994) [16 years] Starchild Abraham Cherrix (VA, 2006) [15 years] Dennis Lindberg (WA, 2007) [14 years] In re E.G. (IL, 1989) [17 years] Billy Best (MA, 1994) [16 years] Starchild Abraham Cherrix (VA, 2006) [15 years] Dennis Lindberg (WA, 2007) [14 years]

6. Treuman Katz Center for Pediatric Bioethics - 2009 Conference The Trend is Not Absolute Daniel Hauser (MN 2009) [13 years] –Unable to read (learning disability) –Mom supported his decision; Father did not. Daniel Hauser (MN 2009) [13 years] –Unable to read (learning disability) –Mom supported his decision; Father did not.

7. Treuman Katz Center for Pediatric Bioethics - 2009 Conference If parents had full authority… Parents’ PreferencesYESNO PHYSICIAN’S Actions TREATDo NOT treat; try to convince but in the end, respect parents’ wishes. If minors had full authority… Minor’s PreferencesYESNO PHYSICIAN’S ActionsTREATDo NOT treat; try to convince but in the end, respect patient’s wishes. But parental authority is NOT absolute role of the State (to promote basic interests) role of the Adolescent (mature minor doctrines) But children do not have absolute authority… …even when they have decisional capacity!

8. Treuman Katz Center for Pediatric Bioethics - 2009 Conference MINOR’S Preferences YESNO PARENTS’ Preferences YES NO DECISION MAKING WITH AND ON BEHALF OF CHILDREN WITH RESPECT TO EFFECTIVE LIFE-SAVING THERAPIES.

9. Treuman Katz Center for Pediatric Bioethics - 2009 Conference MINOR’S Preferences YESNO PARENTS’ Preferences YESBEST INTERESTMINOR REFUSAL NOPARENTAL REFUSAL FAMILY REFUSAL DECISION MAKING WITH AND ON BEHALF OF CHILDREN WITH RESPECT TO EFFECTIVE LIFE-SAVING THERAPIES.

10. Treuman Katz Center for Pediatric Bioethics - 2009 Conference MINOR’S Preferences YESNO YESTREAT. Respect for parental authority in defining a child’s best interest. Good to have the child on board. TREAT: Respect parental wishes on the grounds of the minor’s “Best Interest” and the child’s immaturity. Try to convince the child to see the utility of treatment. NOTREAT with COURT ORDER. Parents are failing to provide for their child’s basic interests which is medical neglect. Good to have the child on board. TREAT with COURT ORDER. Parental medical neglect. The fact that the child agrees with parents is assumed to be not an independent decision. Table 4: DECISION MAKING WITH AND ON BEHALF OF CHILDREN WITH RESPECT TO EFFECTIVE LIFE-SAVING THERAPIES. Does not appear that patient/family opinions matter! PARENTS’ Preferences

11. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Table 5: DECISION MAKING WITH AND ON BEHALF OF TEENAGERS WITH RESPECT TO LIFE-SAVING THERAPIES. ALGORITHM IF MATURE MINORS WERE GRANTED DECISION MAKING AUTHORITY ADOLESCENT’S Preferences YESNO YES TREAT. Minor defines his own best interest. Good to have the parent’s support. NO TREAT. Adolescent can make his or her own decisions, and his right to do so trumps his parents’ duty to promote his basic needs. NO TREAT on the grounds that the teen is a mature minor. Can try to help parents understand the minor’s judgment. NO TREAT. Adolescent can make his or her own decisions. Strengthened by his parents’ agreement (although should be unnecessary). Gives all authority to minor (already rejected) PARENTS’ Preferences

12. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Table 6: DECISION MAKING WITH AND ON BEHALF OF TEENAGERS WITH RESPECT TO EFFECTIVE LIFE-SAVING THERAPIES. WHAT ACTUALLY HAPPENS. ADOLESCENT’S Preferences YESNO YES TREAT: In the minor’s best interest (as determined by parents and minor) TREAT. Parents define the minor’s best interest. Minor can avoid treatment by convincing parents or by running away. NO TREAT Go to COURT on the grounds that parents are medically neglectful. Can also assert that the minor is acting as a mature minor. TREAT /NO TREAT BASED ON COURT RULING. Argue to treat based on both 1) Parents are neglectful; and 2) that teen lacks decisional capacity to make an independent decision. Courts moving to respect the teenager’s decision. This is particularly true when the teen and parent agree. The authority of both parents and adolescents is limited by State Authority and the need to promote the minor’s “basic interests” PARENTS’ Preferences

13. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Table 7: DECISION MAKING WITH AND ON BEHALF OF MINORS WITH LIFE-THREATENING ILLNESSES WHEN ONLY EXPERIMENTAL OR LOW-EFFICACY LIFE-SAVING TREATMENT EXISTS MINOR’S Preferences YESNO YESTREAT. In the child’s best interest TREAT/NOT TREAT based on benefit to risk ratio and the maturity of the child. NODo NOT treat. When possible, seek compromise. Do NOT treat particularly if the child is mature. When possible, seek compromise. Authority of the parents and the minor increases when efficacy decreases or treatment experimental because State’s role of ensuring “basic interest” is ambiguous. PARENTS’ Preferences

14. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Do reasons matter?

15. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Consider, again, the 4 cases In re E.G. (IL, 1989) –Jehovah Witness: Refusal of blood. Billy Best (MA, 1994) –Born Again Christian: Wanted both CAM (complementary and alternative medicine) and prayer. Starchild Abraham Cherrix (VA, 2006) –Religious beliefs are not mentioned; only the desire for CAM. –Compromise of a combo of CAM and XRT Dennis Lindberg (WA, 2007) –Jehovah Witness: Refusal of blood In re E.G. (IL, 1989) –Jehovah Witness: Refusal of blood. Billy Best (MA, 1994) –Born Again Christian: Wanted both CAM (complementary and alternative medicine) and prayer. Starchild Abraham Cherrix (VA, 2006) –Religious beliefs are not mentioned; only the desire for CAM. –Compromise of a combo of CAM and XRT Dennis Lindberg (WA, 2007) –Jehovah Witness: Refusal of blood

16. Treuman Katz Center for Pediatric Bioethics - 2009 Conference And why the 5 th case is different Daniel Hauser’s family is Roman Catholic and believes in the "do no harm" philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods. –The Nemenhah Band claims to be a group of American Indian healers; however, their practices have been criticized by many Native Americans. –Nemenhah group’s leader, Phillip Landis, has been convicted of fraud in two states for misleading investors in an alternative-health mushroom-growing business. –On its website, the Nemenhah Band offers you the opportunity to be adopted into the band and become a natural healer for $250. Daniel Hauser’s family is Roman Catholic and believes in the "do no harm" philosophy of the Nemenhah Band, a Missouri-based religious group that believes in natural healing methods. –The Nemenhah Band claims to be a group of American Indian healers; however, their practices have been criticized by many Native Americans. –Nemenhah group’s leader, Phillip Landis, has been convicted of fraud in two states for misleading investors in an alternative-health mushroom-growing business. –On its website, the Nemenhah Band offers you the opportunity to be adopted into the band and become a natural healer for $250.

17. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Court-Mediated Disputes Between Physicians and Families over the Medical Care of Children by Derry Ridgway. Arch Pediatr Adolesc Med 2005; 15: 891-896. 65 judicial opinions from 50 identified disputes between 1912-1998. Impossible to count or characterize the relevant court decisions that are not accompanied by published opinions so it is not known how representative these 50 cases are. Impossible to count or characterize those cases that do not go to court. 65 judicial opinions from 50 identified disputes between 1912-1998. Impossible to count or characterize the relevant court decisions that are not accompanied by published opinions so it is not known how representative these 50 cases are. Impossible to count or characterize those cases that do not go to court.

18. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Court Decisions Overall 80% of cases favored physicians. –Did not change across time and was not affected by patient characteristics (age, sex, or disease). Physicians more likely to succeed against religious objections [27 of 30 or 90%] versus [13 of 20 or 65%] –Religious cases can cite Prince v Massachusetts which states that parents can choose to be martyrs but they CANNOT make martyrs of their children. But remember: NOT all cases of refusals go to court. So whether refusals based on religion is more or less likely to go to court may determine to what extent “reasons matter”. Clearly some reasons will be easily overridden (a green Martian told me to refuse). Overall 80% of cases favored physicians. –Did not change across time and was not affected by patient characteristics (age, sex, or disease). Physicians more likely to succeed against religious objections [27 of 30 or 90%] versus [13 of 20 or 65%] –Religious cases can cite Prince v Massachusetts which states that parents can choose to be martyrs but they CANNOT make martyrs of their children. But remember: NOT all cases of refusals go to court. So whether refusals based on religion is more or less likely to go to court may determine to what extent “reasons matter”. Clearly some reasons will be easily overridden (a green Martian told me to refuse).

19. Treuman Katz Center for Pediatric Bioethics - 2009 Conference Concluding Thoughts The evolving position by many courts, state legislatures, and health care providers to respect FAMILY REFUSALS in cases of life-threatening illness when an effective treatment exists is morally inconsistent with our obligation to protect and promote the basic medical needs of minors. Basic medical needs have lexical priority over other interests and needs, both present and future-regarding. When efficacy of treatment is low (how low is a more complicated problem) or treatment is experimental, the state should be more hesitant to override the family’s refusal because it is ambiguous whether treatment promotes the minor’s basic interests. The evolving position by many courts, state legislatures, and health care providers to respect FAMILY REFUSALS in cases of life-threatening illness when an effective treatment exists is morally inconsistent with our obligation to protect and promote the basic medical needs of minors. Basic medical needs have lexical priority over other interests and needs, both present and future-regarding. When efficacy of treatment is low (how low is a more complicated problem) or treatment is experimental, the state should be more hesitant to override the family’s refusal because it is ambiguous whether treatment promotes the minor’s basic interests.