Jane McCredie: Change of mind

WHEN somebody offers to donate a kidney to a desperately ill friend or relative, it’s an act of unparalleled generosity.

But what happens if they later change their mind?

The ramifications for the two individuals involved, and their broader family or social network, can be huge.

Psychiatrist Dr Sally Satel has written about her own roller-coaster ride when advanced renal disease led her to seek a kidney from a live donor.

Two friends offered, were found to be suitable donors, but then withdrew, as did a man found through a website set up to match recipients with altruistic donors.

One of the friends went silent for several months, only revealing she had changed her mind after Dr Satel broached the question.

“I felt sorry to have put her in this position, but I was also bitter: just when would she have gotten around to telling me?” wrote Dr Satel, who did eventually receive a kidney from another friend.

Navigating such complex territory is no easy task for the health professionals who work in the field of kidney transplantation. How do they ensure a live donor is genuinely willing, that no pressure has been applied and that consent is truly informed? And what should they do to protect a potential donor who changes their mind?

After studying live donation consent forms used by US transplant centres, a group of transplant surgeons and nephrologists from Yale University came to the conclusion that potential donors should be promised an “alibi” if they later changed their mind.

“To preserve potential donors’ autonomy and relationships, we advocate that all transplant centres offer general alibis in their evaluation consent forms”, they write in the Journal of Medical Ethics.

Just to be clear, these doctors are not advocating that transplant teams lie about the donor’s medical status. The alibi would simply state they had been found not to be a suitable donor — which, in the case of somebody who had changed their mind, would clearly be true.

Mind you, the Yale team doesn’t address the question of what happens next. How is the team, or the donor, to respond when the recipient asks why the donor is unsuitable?

That would seem a particularly tricky question if the withdrawal happens late in proceedings after compatibility has been established.

Doctors can of course reply that they are unable to discuss private health information, but there’s no guarantee that would put the matter to rest.

It’s interesting to note the variability in the 150 or so consent forms evaluated by the Yale researchers.

Around one in five centres made the offer of an alibi in consent forms. In most cases, this was a general statement of unsuitability, although a few were prepared to go further and suggest the unsuitability was on medical grounds.

Most forms did not adequately address issues of confidentiality around a decision to withdraw, the authors wrote, saying information was often incomplete or ambiguous.

And, although almost all consent forms advised donors of their right to withdraw at any time, three did not.

It’s possible those centres made this clear in other ways, but these authors argue such issues need to be documented in writing during the consent process.

“While conversations about alibis may be easily forgotten or confused in the onslaught of other information conveyed during the evaluation process, the potential donors can return to their copy of the evaluation consent form at any time to refresh their memories …”, they write.

How might up-front offers of alibis affect rates of altruistic donation?

We really don’t know. Perhaps more people would end up changing their minds, secure in the knowledge their reasons would not be exposed.

But the potential for a safe withdrawal might also make it easier for others to contemplate this extraordinarily generous act.

Jane McCredie is a Sydney-based science and medicine writer.