1.My Sisters Keeper by: Jodi Picoult Ethics: Week 5 Presentation November 2010 Jaelin Mayer Stephanie Noble Stephen Lee

2. Story Outline 3. Kate is a 16 year old who was diagnosed with Leukemia at 2 years old. She has an older brother, but he is not a genetic match for a bone marrow transplant. Doctors recommended that her parents scientifically engineer another child to ensure a bone marrow match for Kate. Kates parents eagerly pursued having another child in order to try and save Kates life. Anna is born and from birth is subjected to multiple procedures in order to treat Kate. From donating bone marrow to blood, Anna spent a lot of her childhood in the hospital as well. 4. Now that Kate is 16, she is progressively getting weaker and treatments are no longer effective. Kate does not want to be treated anymore. She is ready to let go but doesnt know how to tell her family. Doctors say a kidney is Kates only chance for survival. Her parents are pushing Anna to donate, even though there are definite long-term consequences for Anna if she only has one kidney. Unable to convince her parents that she does not want to donate her kidney to her sister, she hires a lawyer to sue for medical emancipation. 5. Presenters Jaelin Mayer Role of Anna Stephanie Noble Role of Kate Stephen Lee Role of Parents 6. Step 1: Ethical Questions Should a doctor recommend a family have another child in order to have a bone marrow match for a living child? Should a family scientifically engineer a child for the sole purpose of harvesting tissues and organs for another child? Do Anna's parents have the right to require Anna to donate an organ to her sister? Is Anna, 13 years old, subject to her own assent, or is she legally bound to her parents will because of her age? Should she have any say in her participation in donating tissue/organs? As Kate is dying, does she have the right to request the cessation of treatments when recovery seems very remote? 7. Step 2: Our First Reactions 8. STEP 3: What are the clinically relevant facts? Both Anna and Kate are minors. Kate has a cancer that will kill her without treatment and Anna is the only organ/tissue match for this treatment. By continually donating, Annas quality of life has been greatly impacted. The parents want to continue fighting the cancer at all costs. 9. What facts do you need to gather? What policies are already in place? What does the law say about a minor donating a kidney? What are the health risks for Anna in continually giving bone marrow and tissues? What are the health risks for Anna to donate a kidney? What are the chances for Kates survival and cancer remission if she continues to receive bone marrow and a kidney transplant? What has been communicated to the parents regarding Kates chances for survival? Is the family in any kind of support group that could help them process through these decisions? 10. Step 4: What are the values at stake for all the relevant parties? Kate Autonomy Respect for Persons Time with family Dying with Dignity 11. Anna Autonomy Quality of Life Responsibility Respect for Persons Family relationships 12. Parents Family Health Fidelity 13. Medical Community Providing Treatment Options Acting in the Patients Best Interest Education Empathy & Compassion Respecting decisions of patient/family 14. Step 5: What could you do? As Kate, I could tell my family and doctors my wishes not to receive more medical treatment. I could let Anna give me her kidney and be thankful for the small amount of time it would buy me with my family. I could sue for medical emancipation for myself so I could choose when to stop treatment. I could refuse the treatment and hope people would support my decision. 15. As Anna, I could donate my kidney, even though it will alter my future plans, there is a risk that I could die, and it may not ultimately save my sisters life. I could sue my parents for medical emancipation so that I can make the decision about my kidney and any future procedures for myself, although this will anger my parents and my sister may die as a result. 16. As the parents, We could talk with Kate about how she is doing with all the medical treatments, discuss what she wants to do, and try to come to a decision on the future steps of her care based on the conversation. We could let Kate die with dignity. We could wait for another treatment option. We could force Anna to donate her kidney. 17. As the Medical Community, We could educate the family. We could talk with Kate and Anna individually. We could solely follow the AAP criteria for a minor donating an organ. We could refuse to perform a transplant on a minor. We could do the transplant based on the parents wishes. 18. Step 6: What should you do? Educate Long-term Consequences Odds of Recovery American Academy of Pediatrics Guidelines Donor Advocacy Team Minor Consent 19. Step 7: Justify your choice Education Patients Best interest Integrity 20. Step 8: How could this ethical issue have been prevented Education regarding the existing American Academy of Pediatrics Guidelines. Establish a policy regarding scientifically engineering a child for a bone marrow match. 21. Resources: http://www.suite101.com/content/book-review-my-sisters-keeper- a38500 (for summary of the book/movie) Minors as Living Solid-Organ Donors By Lainie Friedman Ross, MD, PhD - http://pediatrics.aappublications.org/cgi/content/full/122/2/454 Health Care Decisionmaking by Children. Is it in their best interest?, by Lainie Friedman Ross http://stemcells.nih.gov/info/ethics.asp Should minors be able to serve as living organ donors www.vcu.edu/.../should%20%minors%20be%20living%20donors_.ppt All pictures are taken from movie clips