Donatie bij leven: druk op de donor

• Jan Van Busschbach – Psychologist – [email protected]

• 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)

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?

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

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”

Norwegian approach will be appreciated

60 50 40 30 20 10 0 Positive Mixed Negative Patients "Donors"

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.

What stops us?

• Fear for pressure on the

potential donor

• Not the medical domain – The donor is not a patient • It is not ethical…

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…

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

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

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..

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

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

Conclusions

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