1. Donatie bij leven: druk op de donor Jan Van Busschbach –Psychologist –J.vanbusschbach@erasmusmc.nl A multi disciplinary team… –Emma Massey (psychologist) –Willij Zuidema(transplant coordinator) –Jan Ijzermans (surgeon) –Willem Weimar (internal medicine) –Leonieke Kranenburg (psychologist) –Medard Hilhorst (ethicist) –Johan van Gogh (psychologist) –Sohal Ismail (psychologist)

2. Living transplantation:why not? Advantages –Reduces the waiting list –Increases craft survival Are the outcomes good enough? –Should we pursue living donation? From a descriptive point of view… –The answer is might be no… –Living donation is not widely pursued Wat stops us? –What are the psychological barriers?

3. Investigated Psychological barriers Inadequate information Risk perception Negative emotions towards living donation Block communication between patient and donor Kranenburg LW, Zuidema WC, Weimar W, Hilhorst MT, IJzermans JN, Passchier J, Busschbach JJ. Psychological barriers for living kidney donation: how to inform the potential donors? Transplantation. 2007 Oct 27;84(8):965-71

4. Norwegian approach Dr. Anders Hartmann The physician communicates –directly with the potential donor Physician discusses with patient –Physician asks permission from patient –And calls the donor –No motivation of any refusal is given: “donor is not suitable”

5. Norwegian approach will be appreciated

6. James Rodrique Activates communication in family –systems “Very local” information meeting Especially in minorities RCT: –Increase in knowledge –Willingness to discuss living donation –Decrease concerns Rodrigue et al. Increasing live donor kidney transplantation: a randomized controlled trial of a home-based educational intervention. Am J Transplant 2007;7:394-401.

7. What stops us? Fear for pressure on the potential donor Not the medical domain –The donor is not a patient It is not ethical…

8. Fear for pressure on the potential donor But we already put pressure on patients –on a routine basis –“If you don’t take the medicine you will become sick” Caregivers feel pressure –But are not relieved “I fear the operation, but I have to donate…” –Mother about living donation towards her daughter “Pressure” needs debate…

9. Not the medical domain? Potential donor is not a patient –Excludes caregivers –Exclude prevention –Suggests that patients are independent subjects, and not part of a system The potential donor is in the medical domain

10. Not ethical? In spoken language: good or bad In science: consistent set of rules –Rules that are valid –Rules we agree on… Is talking with the potential donor and patient ethical? –Is there a consistent set of rules? Rules that are valid Rules we agree on… –That forbid or allow such interference

11. Forbid interference Non-directivity and value neutrality –Talking with the potential donor is directive –But there is no such thing as non-directivity and value neutrality in counselling in general This rule can not applied validly anywhere One should not change personal beliefs –Assumes that beliefs are stable,… which they are not Personal beliefs have formed… There is no reason to believe they are completed –Assumes that beliefs are always right… which they are not –Assumes that it possible not to interfere… No consistent sets of rules..

12. Allow interference in beliefs Stephen Toulmin –Beliefs are a model of logical arguments –Arguments are not fixed, but dynamic, –Interferences can refine the model of arguments Rawls –Beliefs represents a network of idea’s and facts –Interferences can help to keep communication within the network open

13. It is ethical to talk with donor? Ethics is a consistent set of rules –Rules we would like to endorse Set of rules that hold back interventions –Seems to be inconsistent Set of roles that allow interventions –Consistent Hilhorst MT, Kranenburg LW, Busschbach JJ. Should health care professionals encourage living kidney donation? Med Health Care Philos. 2007;10(1):81-90

14. Conclusions There are psychosocial barriers –In living donation It is ethical to interfere –Outcomes define in process variable These barriers can be overcome