1. 1  Jan Busschbach  Psychologist  J.vanbusschbach@erasmusmc.nl  In cooperation with  Willij Zuidema  Jan IJzermans  Willem Weimar  Jan Passchier  Leonieke Kranenburg  Medard Hilhorst Settling Psychosocial Barriers in Living Donation

2. 2 Living donor transplantation: are the outcomes good enough?  Advantages  Reduces the waiting list  Increases craft survival  Are the outcomes good enough?  Should we pursue living donation?  Are the better outcomes worth the costs? Are the outcomes more valuable than the cost to overcome the barriers  From a descriptive point of view…  The answer is might be no…  Living donation is not widely pursued  The effects do not outweighed the cost to overcome the barriers

3. 3 Barriers  What are the barriers?  Sometimes hard medical issues…  But most often soft issues  Legal  Cultural  Organizational  Psychological

4. 4 Psychological barriers  Negative emotions towards living donation  Inappropriate emotions  Issues that related to inappropriate emotions …  Information  Wrong information  Risk perception  Wrong risk perception  Communication between patient and donor  Blocked communication * 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

5. What can we do?  How can we change…  Wrong information  Wrong risk perception  Blocked communication  Talking with the potential donor and patient

6. Rational  More and better information…  Gives more appropriate emotions 6 Information Interpretation Emotion

7. Not so rational,.. but reality  Better (more appropriate) emotion  Better interpretation of information 7 Information Interpretation Emotion

8. Most likely model…  Need to work on both information and emotion  Next question: how?  Talking with the patient and the potential donor  But there is not yet a ‘evidence based’ way… 8 Information Interpretation Emotion Interpretation

9. Looking for the best psychotherapy..  Not much difference between psychotherapies  Many very different therapies seem to work equally well  Research into non-specific factors  Success factors in counseling  Most important non-specific factors  Therapeutic alliance  Therapy adherence  System involvement Family Friends

10. Therapeutic alliance  Biggest generic success factor  Sexton & Wiston (1992)  “…research has confirmed [that] the success of any therapeutic endeavor depends on the participants establishing an open, trusting, collaborative relationship or alliance.” http://personcentered.com/research.html  Control of emotion  Safe environment  How do we establish such alliance  Listening and talking…  Is it so simple?

11. Counter-transference  Our own ‘psychological schemes’ interfere  Alternatively: Use theoretical scheme  It does not matter much which…  Behavioral therapy  Cognitive therapy  Schema focus  Mentalisation  Reduces influence of own ‘psychological schemes’  Helps to build a “…open, trusting, collaborative relationship or alliance.”  In order to control emotions

12. Treatment adherence  Treatment adherence is fatal  It does not matter which therapy  As long as one use ONE therapy  Created a consistent…  Framework  Language  In a confusing world  Thus consistency is important  In time  Within the team  Protocols: adherence

13. Involve system  Patient part of ‘system’  System  Family  Friends  College's  Neighborhood  System is strong  Involve system when necessary  In living donation, the system is important  Obviously…the donor is part of the system

14. 3 success factors 1. Therapeutic alliance 2. Adherence to ‘a’ therapy 3. Involve system

15. 15 What stops us?  Fear for pressure on the potential donor  But we put pressure on patients on a routine basis  “If you don’t take the medicine you will become sick”  Not the medical domain  The donor is not a patient  It is not ethical…  to talk to the potential donor

16. 16 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

17. 17 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

18. 18 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..

19. 19 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 are a model of reflective equilibrium  Beliefs represents a network of idea’s and facts  Interferences can help to keep communication within the network open

20. It is ethical to talk to the 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  Outcome in terms of process variables * Hilhorst MT, Kranenburg LW, Busschbach JJ. Should health care professionals encourage living kidney donation? Med Health Care Philos. 2007;10(1):81-90

21. Existing interventions  Most standard  Physician talks with patient Information Emotion regulation  Patient talks with potential donor Patients brings donor to the physician  More active towards donor…. (Rotterdam)  Information meetings  For both patients and relatives (perhaps the donor)  “semi targeted” information towards donor 21

22. Norwegian approach  Dr. Anders Hartmann  The physician communicates directly with the potential donor  Physician discusses system with patient  Physician asks permission from patient  And calls the donor  No motivation of any refusal is given: “donor is not suitable” 22

23. Norwegian approach will be appreciated 23

24. James Rodrique  Activates communication in family (systems)  “Very local” information meeting  Especially in minorities  RCT results:  Increase in knowledge  Willingness to discuss living donation  Decrease concerns  Outcome in terms of better model of arguments  Toulmin, Ralws 24 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.

25. Illustration of a theoretical framework  MST: MultiSystemic Therapy  Crime prevention in youth  Involving the whole system  Blueprint therapy  evidence-based  Practical  “Whatever it takes”  But what about  Own psychological schemes?  Treatment adherence?

26. Treatment adherence MST

27. Conclusions  There are psychosocial barriers  In living donation  It is ethical to interfere  Outcomes define in process variable  These barriers can be overcome  Building a constructive alliance Controlling emotions  Treatment adherences  Involve system 27