‘Hello, my name is John Morton’, I said when the nurse took me to meet the relatives of a young man whose severe head injuries from a motor vehicle accident had progressed to brain death. ‘I’m sorry to find you in this sad situation—the neurosurgeons tell me that the outlook is hopeless for Bob—that the man that you knew and loved has gone—is that your understanding?’.

I was first put in that situation, without training or supervision, as a junior member of the transplant team in Edinburgh in 1969. I thought that it was my responsibility to get permission from relatives and next of kin for permission to use kidneys for transplantation. For a time, one dreaded the calls that led to similar grim scenes. There had been no training because cadaver transplantation (as it was then called) was new, the consent process had not been studied, and community and professional attitudes were then as mixed about transplantation, as are feelings about genetic engineering today. Sometimes we were referred to as ‘ghouls’ and ‘body snatchers’, and long survival after kidney transplantation was noteworthy.1

Early antipathy towards transplantation stimulated pioneer surgeons’ interest in ethics, an early example of which thoughtfully examined the doctor’s responsibility towards an individual patient—The One—in relation to his responsibility to the community—The Many—of which he and his patient are members.2 Transplant surgeons continue to examine what doctors do, what their patients expect of them, and how the expectations of both are not being met.3

Reflection on experiences with the first 100 grieving families, identified a basic problem. If the response to that first question was disbelief, denial, or anger at the messenger, then the gravity of the situation was not understood and further explanation was required. Before blaming the carer for this, it must be understood that detailed but devastating prognostic information is sometimes denied. Once this challenge was recognised, the counselling of families faced with the awful, unexpected predicament of a loved one’s certain death, became a fulfilling experience, rather than a dreaded burden. Predictably, the consent rate doubled when there was better understanding by both parties.

Only when the inevitability of death was understood and accepted was it reasonable to observe that: ‘as you may know, in these tragic circumstances when a previously healthy person is stricken in this way it is sometimes possible to help others by the use of organs for transplantation. It is my duty to discuss this option with you’. For many next-of-kin now, but not in 1969, the response is ‘we have talked about that’, and not uncommonly the prospect for organ donation is first raised by the next of kin, especially when it is known to have been the potential donor’s wish.

When the Edinburgh experiences were recounted to Christchurch School of Medicine students 30 years ago, and the need for objective study promulgated, a mature student returned to say, ‘I would like to do that study’. When the outcome of his work was published in the British Medical Journal4 it had no references, because it was original. Leonard found that most had positive attitudes to transplantation that had been strengthened by experience, especially when they knew that they were fulfilling the donor’s wishes. Two-thirds of the relatives had gained some solace from knowing that others might benefit from their misfortune, but 1 in 10 reported adverse effects.

In identifying the factors that influenced them to grant permission or hesitate, relatives revealed defects in the way their permission had been sought. More than one-third did not clearly understand the donor’s hopeless prognosis until then, and some reacted adversely to the interviewers, finding them blunt and callous. Nevertheless, most were pleased that they had been asked.

In 1969, there were no intensive care units (ICUs)—as we now know them. As that discipline developed, making great contributions to the care of the critically ill, it was appropriate that ICU staff, who had cared for potential donors and established communication with their next of kin, should discuss the organ donation option with them.

Whilst ‘anything that can happen does eventually happen’, creating an anecdote to fuel speculation, this interviewer, in over 200 encounters, never met refusal for organ donation when it was known to be the potential donor’s wish. In the light of this experience, it is surprising that the possibility has become the focus of so much attention.

As long as training is provided, discussion about organ donation can be gratifying for all concerned. Audit of the experiences of surviving relatives, partners, and families provides information that is essential for training, and it measures the quality of the process. Everything that we know about the experience of organ donation has come from the precious resource provided by the experiences of living donors or the relatives and friends of deceased donors. The National Donor Coordinators require adequate resources for the research5 that is necessary to gain access to this resource and to provide enlightened training.

The debate about consent for cadaver organ donation illustrates the ‘know-do’6 gap that can exist between what evidence shows is best practice and what is sometimes practiced or advocated.

Since the transplantation of organs from the deceased depends in a unique way on community understanding and support, it relies on the trust that has been earned by sound practice—a trust that might be diminished if the need for consent is removed.

Author information: John Morton, Medical Advisor, RMO Resource Unit, Christchurch Hospital, Christchurch

Correspondence: John Morton, President, National Kidney Foundation, Christchurch Hospital, Private Bag 4710, Christchurch. Fax: (03) 364 640, ext 89680; email: john.morton@cdhb.govt.nz