1. Assessing Potential Altruistic [Non-Directed] Living Organ Donors Katrina A. Bramstedt, PhD, FRSM Associate Staff, CCF Bioethics City-Wide Case Discussion 3 February 2006

2. Non-Directed Donation  An “anonymous” adult makes an altruistic donation to an unidentified recipient  The donor cannot “direct” the donation to a specific patient or type of patient (gender, race, religion, occupation, etc.)  The donation is directed to the institution who then chooses the recipient

3. Living Donation: Liver R lobe (adult to adult) L lateral segment (adult to child)

4. Living Donation: Kidney

5. Living Donation  Pancreas (partial organ or islet cell donation; very rare)  Lung Lobe (2 adults donate one lobe each)  Intestine (very rare)

6. Statistics, www.unos.org Living Donation, USA (1988-Oct 2005) Kidney73,125 Liver 2,914 Lung 457 Pancreas 70 Intestine 28 --------- Total 76,594* *# non-directed unknown

7. Waiting List, www.unos.org As of 25 January 2006: 65,000 people waiting for a kidney tx 17,300 people waiting for a liver tx 3,100 people waiting for a lung tx

8. Living Liver Donation  RISKS Bleeding Need for transfusion Infection Stroke, cva Liver failure/Need for own transplant Bile duct problems Pain Anesthesia complications DEATH (0.2 – 2%, depending on procedure) Difficulty in getting insurance/higher insurance rates

9. Living Kidney Donation  RISKS Lap procedure converts to open procedure Bleeding, need for transfusion (rare) Infection Damage to surround structures during organ removal Anesthesia complications Stroke, cva Pain DEATH (3 in 10,000. One known case of donor PVS) No increased chance of kidney failure for donor (though these donors are left with no backup kidney) Difficulty in getting insurance/higher insurance rates

10. Issues in Non-Directed Donation What motivates potential donors? What are their conflicts of interest? Should donors have their own health insurance? Does the donor’s spouse support the donation? Mental & physical health of potential donor Long term follow up of donors (psych & med) Donors stalking recipients/privacy issues Are some types of donation too risky? Should we even be doing these procedures? Require a formal program at take them as they come?

11. Transplant Team Surgeons Medical Director & Surgical Director Physicians Chem. Dep. Counselor Social Worker Tx CoordsBioethicistPsychiatrist Potential Donor

12. Assessment of Potential Donors  First Tier Evaluations: Social Work, Psychiatry, Bioethics  Second Tier Evaluations: Hepatologist/Nephrologist, Surgeon, Anesthesia, bood/urine tests, imaging, EKG, etc.

13. Bioethics Eval  Review medical record (if it exists) Understand the patient’s history and note what meds they are taking—you may not see any Psych notes but you might see Psych meds.  Ask the potential donor about his/her medical hx? WHY? Does what they say match with the medical record? Have they ever had a surgical procedure before? Medical compliance issues?

14. Bioethics Eval  Do they have their own health insurance? Not all renal transplant patients have Medicare and the private insurance they have will only cover the donor’s costs for a limited time (usually 6mo – 1yr). What if the donor has late or long-term complications?

15. Bioethics Eval  Drug/ETOH use? Won’t Social Work be asking about that? YES, but with two sets of answers you can compare notes to see if the person is consistent.  Supportive Spouse/Family? Again, won’t Social Work be asking about that? YES, but with two sets of answers you can compare notes to see if the person is consistent.

16. Bioethics Eval  Ask about his/her financial situation Recent bankruptcy? No job? Lots of debt? Significant money problems can be a red flag to a possible ulterior motive of money seeking (from recipient whom they might attempt to identify) US study: Ave out of pocket expenses for R lobe liver donors $3660 (travel, lodging, meds, time off work). Japanese study: 16% of kidney donors experienced financial burden (11 of 69 donors) due to costs not covered by recipient’s insurance.

17. Bioethics Eval  For those who want to donate part of their liver, ask them WHY LIVER? Why not a kidney?  Maybe they have a renal problem or a hx of renal disease in their family, but if not, why are they choosing a higher risk procedure (liver donation vs kidney donation)?

18. Bioethics Eval  Assess their level of knowledge about donation.  Do they appear to be grasping the information you talk with them about?  How do they respond when you discuss the risks of donation?  Offer them the opportunity to meet someone who has been a donor.

19. Bioethics Eval  Observe behavior of potential donor Overeager, extremely anxious, fearless Inappropriate comments/questions (“I want the organ to go to a Christian”; “How much can I get paid for this?”; “Can I tell my local newspaper about this?”) Multiple questions about recipient identity or meeting the recipient “Odd” affect Under influence of drugs/ETOH Poor cognition Poor knowledge about donation/transplant (they have already undergone a detailed phone screening)

20. You’re the Ethicist…  A 45 yr old, Mormon, mother of 6, living in California, presents to CCF for bioethics eval in anticipation of being a non-directed, living liver donor.  No medical record on file. Current meds (per her report) are Xanax and Nexium.  As the Bioethicist, what questions come to mind?

21. End Acknowledgement: I thank Carmen Paradis, MD for her thoughtful input during the preparation of this presentation. References: 1.Adams PL et al. Transplantation 2002;74:582- 589. 2.Delmonico FL. JAMA; 2000;284:2919-2926. 3.Bramstedt KA. Am J Gastro 2006;101:in press. 4.Trotter JF. Liver Transpl 2001;7:485-493. 5.Isotani S. Urology 2002;60:588-592.