Directed altruistic donation dilemmas: a transplant surgeon s perspective
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2 CHENV g March 2018 Directed altruistic donation dilemmas: a transplant surgeon s perspective Frank JMF Dor, MD PhD FEBS(Hon) FRCS Consultant Transplant Surgeon, Head of Transplantation, Imperial College Renal and Transplant Centre, London,
3 Directed altruistic live donation What is it? The HTA framework describes a spectrum of relationships that constitute directed altruism and defines two categories: 1. Genetic relationship and no established emotional relationship (e.g. Donors living overseas who have not seen their potential recipient for many years; relative with whom there has been no contact previously) 2. No pre-existing relationship between donor and recipient prior to the identification of the recipient s need for a transplant (i.e. contact through social networking or media campaigns e.g. facebook, bespoke websites, local newspapers).
4 Directed altruistic live donation What is it NOT: Anonymous donation to a person who is not genetically related nor emotionally related (non-directed altruistic donation, unspecified donation)
5 Advantages Live Kidney Donation Elective surgery Advantages for recipient: - pre-emptive Tx: prevent dialysis - alternative programs: AB0i, paired exchange, unspecified - selected donors -> good quality kidneys - short cold ischemia -> superior graft function - impossible transplants Economic advantages
6 7th Kidney Transplant Photo with permission
7 Live donor kidney transplantation Preferred treatment for ESRD Recipients dependent on social network genetically related emotionally related Go and find a live kidney donor...
8 Altruism Care about, or help other people, even though this brings no apparent advantage to yourself Han Wezelaar 1964
9 Altruism Auguste Comte 1851 Care for well-being (fitness) of another person Life style of a person acting in the interest of others
10 Anatomy of Altruism
11 Photo with permission Altruism?
12 Classification Living Donation Dor et al. Transplantation May 15;91(9):935-8
13 Public Solicitation of Organs from Living Donors
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15 Photos with permission
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17 Context Legal context: solicitation of an organ is prohibited only if it involves financial inducement or comparable advantages (US, EU) or coercion Practice: liberal (North America) conservative (Europe)
18 Terminology Public solicitation could target both deceased donation and living donation focus on living Public solicitation could involve monetary gain or altruism focus on altruism
19 Terminology Gradient scale of "how public the solicitation is: -one's community (sport, church, school) -traditional media -specially designed websites -social media
20 How public is public? Relatedness Appeal to family, spouse, friends, acquaintances. - Genetically Related - Emotionally Related Appeal to church community, sports club, former school colleagues, intranet at work - Emotionally Related? Appeal via media (facebook, billboards, advertisements, blogs etc). - Genetically Related? - Emotionally Related? - Not Related? 1. Dew MA, Boneysteele G, DiMartini AF. Unrelated Donors. In: Steel J, editor. Living Donor Advocacy: Springer New York; p Frunza M, Van Assche K, Lennerling A, Sterckx S, Citterio F, Mamode N, et al. Dealing With Public Solicitation of Organs From Living Donors-An ELPAT View. Transplantation. 2015;00: 00-00
21 5 nov 2013
22 Photos with permission
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24 Photos with permission Challenges?
25 Photos with permission Challenges?
26 Pronk et al, Transpl Int Mar;31(3):
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28 Public Solicitation: Conclusions Decision to engage in PS was mainly driven by a lack of organs from other living and deceased donors, and a need for action in a hopeless situation. PS was experienced as an emotionally and logistically taxing process. Expectations unrealistic; many dissappointments Need for improved education and support for patients with ESRD considering and undertaking PS.
29 Am J Transplant 2017; 17:
30 Smartphone App Standardised format for Public solicitation
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33 Recommendations - I 1. PS likely to remain in countries that allow genetically/emotionally unrelated LD KTx 2. Review LD screening procedures to deal responsibly with donor offers from PS: LD coordinators to take into account the specific risks and practicalities (possibly excess calls, possibly problematic motivations, etc.) 3. transparency, accountability, and comprehensive oversight
34 Recommendations - II 4. Not to condemn patients who engage in PS as often desperate 5. Our responsibilities: - Optimize national organ donation laws to maximize the deceased and living donor potential; - remove misconceptions and disincentives for live donors to step forward. - Paired kidney exchange and domino-paired kidney exchange should be instated. - Better information should be provided to our patients (e.g., home based education), to health care professionals, and the general public about the advantages of live donor kidney transplantation. - Specific attention to potential of unspecified / non-directed altruistic donation (part of exchange schemes)
35 Recommendations - II 6. Deal with public solicitation and respect solicited donors as regular specified live donors, despite practicalities / challenges 7. Patient education / expectation management when considering PS 8. Develop national guidelines / framework BTS Guidelines Directed Altruistic Donation
36 Thanks for
37 Practising Pragmatism with Altruistic Donation: opportunities, challenges and solutions Lisa Burnapp Consultant Nurse Lead Nurse Living Donation NHS Blood and Transplant CHENV j March 2018 BTS Congress 2018
38 1960s Is kidney transplantation ethical for patients with kidney failure?
39 1960s That s very simple. People would rather live than die. Sir Peter Medawar Dr. Clyde F. Barker, Philadelphia, on Health-Related Quality of Life After Different Types of Solid Organ Transplantation, C. Wright Pinson et al, Annals of Surgery, Vol. 232, no4, , October 2000.
40 First do no harm. Hippocratic Oath BTS Congress 2018
41 BTS Congress 2018
42 Are we right to worry? BTS Congress 2018
43 Coercion or Reward BTS Congress 2018
44 The Beauty Contest BTS Congress 2018
45 This isn t the way it should be done Photo with permission BTS Congress 2018
46 BTS Congress 2018
47 BTS Congress 2018
48 Morally Acceptable A charity that aims to raise awareness of non-directed (also known as altruistic) living kidney donation BTS-NTV March 2015
49 Donation pathways Direct to Waiting List Short Chain Long Chain AD Default pathways from Jan 2018 AD AD WL D1 R1 Paired Exchange pairs D1 D2 R1 R2 WL WL
50 No. of transplants Altruistic Kidney Donors Long chains Donation type Short chains By December 2017: 635 Donations 791 Transplants
51 UK Living Kidney Sharing Schemes* D1 R1 Short Altruistic Donor Chains Long Altruistic Donor Chains 2-way (paired) AD AD D2 R2 D1 R1 D1 R1 D1 R1 D2 WL 3-way (pooled) R3 D3 R2 D2 R2 WL * Developed with University of Glasgow
52 BTS Congress 2018
53 Our Fear? BTS-NTV March 2015
54 EQUIPOISE BTS Congress 2018
55 Balancing the Risk Type of organ Relationship to recipient Motivation Expectations Clinical complexity Physical Psychological Socio-economic issues
56 Our opportunity and our challenge No waiting for a transplant for want of a kidney BTS-NTV March 2015 *
57 Hearts and Minds BTS Congress 2018
58 The Art of the Possible BTS Congress 2018
59 The f Factor Someone s story Personal Real Creates awareness Attracts people BTS-NTV March 2015
60 Organised Match.com? Possible financial incentives Inequity of access Parallel allocation schemes Global attraction Exploitation BTS-NTV March 2015
61 What can we do? Promote everyone s story Encourage donation for the greater good Manage expectations Recipients Donors National guidance 1 Educational resources 2,3 Local protocols BTS Congress 2018
62 Practical Guidance 12 recommendations Preferred donation options Individual direction only (no groups) Spontaneous donation offers Multiple donor assessment HTA assessment and anonymity No paid advertising No organised websites Ethical support 1 BTS Congress 2018
63 What do you actually do? What are the recipient characteristics? How realistic are his/her expectations? How many donors are there? How did they find out about the recipient? How much do they know/understand? What are their expectations? Set limits: E.g. How many donors and criteria for acceptance Are any donors willing to become a NDAD? BTS Congress 2018
64 Thank you BTS Congress 2018
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