Settling Psychosocial Barriers in Living Donation

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

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

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 Emotion • More and better information… • Gives more appropriate emotions Information Interpretation

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

8. Most likely model… Interpretation Emotion • 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… Information Interpretation 8

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 • Therapeutic alliance • Adherence to ‘a’ therapy • Involve system

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. 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. 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. 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. 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

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”

23. Norwegian approach will be appreciated

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 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