Explaining Risks in Transplantation: Principles, Communication, and Response

1. Explaining risk to patients James Neuberger

2. Facts are stubborn things but statistics are plastic (Mark Twain) • Errors using inadequate data are much less than those not using data at all (Charles Babbage) • 99% of all statistics only tell 49% of the story (Ron Delease) • Politicians use statistics like some alcoholics use lampposts – more for support than for illumination (Andrew Lang)

3. Risks associated with donation and transplantation • Risks associated with donor • Donor transmitted infection, cancer • Risks associated with organ • Short and long-term effects • Risks associated with transplant • Surgery • After-effects of surgery • Immunosuppression • General • specific • Acceptance/decline of organ

4. The ‘high risk’ organ • A flawed concept • The risk associated with an organ depends on the recipient • The Donor Risk Index is simplistic • Uses only collected data • Ignores high selection • Varies with time, donor and recipient • Limited data for a rational basis

5. Principles • Consent is • Required by law • A process which starts during assessment • A multi-disciplinary approach • Should be given over time • Information in various formats • Written • Oral • DVD etc

6. The setting • Clinical staff are • Busy and rushed • Not always aware of obligations • Varying skills in communication • Transplant candidates are • Anxious, nervous and worried • Know they would benefit from a transplant • May be encephalopathic or confused • Varied levels of knowledge and understanding

7. Communication is a two way process Failure of communication is not the fault of just one person

8. GMC Guidance • You must not make assumptions about a patient’s understanding of risk or the importance they attach to different outcomes • You must tell patients if … a treatment might result in a serious adverse outcome, even if the likelihood is very small. You should also tell patients about less serious complications if they occur frequently An adverse outcome resulting in death, permanent or long term physical disability or disfigurement, medium or long-term pain… or other outcome with a long-term effect on a patient’s employment, social or personal life

9. People’s response to risk is variable Response to risk depends on many factors including • Familiarity • Control • Personal experience (and other heuristics) • Dread • Emotional state of person (valence theory)

10. Common biases and heuristics(Kahneman and Tversky) • Availability • Events that can be more readily brought to mind considered more likely • Representativeness • Insensitivity to prior, size, • Anchoring • Adjust unknown on basis of known • Asymmetry • Different approaches to gains and losses, preferring certain gain over gamble with higher utility • Threshold • Different choices for similar gain

11. People’s response to risk is variable • “I am going horse riding but won’t sit in row 13 on the bus” • After 9/11, more people in US drove than flew, resulting in an estimated 1000 excess deaths • “I will not eat beef (because of vCJD) but will continue to smoke”

12. Presentation • Be aware that the order in which risks and benefits are presented may affect risk perceptions • Be aware that comparative risk information is persuasive and not just informative • Repeatedly draw attention to the time interval over which the risk occurs

13. From RCoA

18. NHS Booklet on Breast Screening

20. How to phrase the risk Framing is important Response to surgery • There is a 90% chance that you will be alive 1 year after bypass surgery • There is a 10% chance you will die from the surgery

21. so • Data can be presented in many ways • Avoid using % • Avoid using terms like common or rare • Put the figures in context • 1 in 100 rather than 1% • 1 person in a town like Warwick rather than 1 in 30000

22. Explaining risk • 5% risk • 1 in 20 chance • 5 out of 100 people like you • 5 out of 100 ways things may turn out for you

23. Be careful • More information and information that is understandable to the patient is associated with a greater wariness to the treatment and tests • Deaths rates of 1286 out of 10000 were rated as more risky than 24.14 out of 100

24. Other tips • People’s biases • ‘Now that I know of confirmation bias, I see examples all around me’ (Jon Ronson) • Understanding of figures • Many people think a risk of 1:25 is greater than 4:100 • Those people tend to be less interested in shared-care / informed-choice Many suggest written information should aim for those with a reading age of 8-10

25. The micromort: unit of risk(Spiegelhalter) • A 1 in 1000000 chance of sudden death

28. Consent and Transplantation • Ensuring the patient gives consent is a process • delivered by a team, • Over time • Using multiple approaches

29. Patients and higher risk organs • Patients have the right to decide whether there are some characteristics of the donor or organ they do not which to receive • These stipulations should be made • In advance • Related to organ quality not other factors

30. Higher risk organs/donors • When getting an offer from a higher risk donor • Recipient teams should discuss with colleagues • Inform patient (and family) • Document rationale and outcome

31. What NHSBT is doing • Providing information on its website (www.odt.nhs.uk) • Making patient access to data easy • Providing outcome data from high risk donors • Note limitations of data and risks of extrapolation

32. How long will I wait?

33. Here is the answer

34. I have an incompatible donor, should I go for deceased donor?

35. It all depends

36. Further work • NHSBT is providing data • #1: agree what data should be presented to transplant candidates • #2: get the data • #3: agree presentation of data • #4: make available for use • #5: review and revise At all stages, ensure wide consultation

37. Conclusions • Use plain language • Present data using absolute risks and frequencies • Consider use of images such as pictographs • Consider use tables that include tables summarising all benefits and risks • Consider using incremental formats where appropriate • Consider presenting information that is most critical for decision making at the expense of completeness

38. References and thanks • Fagerlin A, et al. JNCI 2011 • Edwards et al, BMJ 2002 • Yamagishi Appl Cog Psyhcol 1997 • Galesic Health Psychology 2011 • Sir David Spiegelhalter • Prof Chris Watson • NHSBT • Alex Hudson • Dr Matthew Robb