Is transplantation medicine losing its way? Organ transplantation has been one of the great medical advances during the past half-century or so. However there have been several episodes of public loss of confidence in organ donation during that time. After the infamous Wada heart transplant scandal, heart transplants in Japan virtually ceased for decades and the case of Sim Tee Hua in Singapore is part of the reason that donation rates remain low there. These scandals have all involved adult patients – up to now.
New questions arose for me however about the ethics of organ donation from news reports of a paper given at a recent transplantation conference in Glasgow. The paper from the world-renowned Great Ormond Street Hospital in London concerned a mother who had chosen not to terminate her pregnancy when she was advised her baby had anencephaly, because she wanted the baby’s organs to mature sufficiently to be used for transplantation, which they were. NHS blood and transplant were quoted as stating, ‘Under no circumstances would our staff or anybody else within the NHS pressure women to continue with a pregnancy solely for the possibility of organ donation.’
However despite this assertion, I am concerned that in practice there can be a very fine line between making a spontaneous choice to have baby anyway and subsequently donating the baby’s organs if and when the child dies and continuing with the pregnancy solely in order to have the organs removed for transplantation after having this option raised by medical staff routinely when severe abnormalities are found. From a utilitarian perspective of course, the latter makes perfect sense – these children have ‘hopeless’ prognoses and will die anyway, so why let their organs simply go to waste? The pressure to cross the line will inevitably increase if organ donation from severely abnormal fetuses is promoted as a major opportunity to solve the crisis of organ shortages.
Though the baby in the case reported, died 100 mins after birth, around 5 percent of anencephalic newborns will live for 6 days or more and an internet search will readily reveal pictures and stories of several of them and their families celebrating the baby’s first birthday. If mothers have been encouraged to consent to organ donation from their babies having been told they have ‘no chance of survival’, how will the infants be treated if they do not die soon after birth?
If the desire to welcome anything that increases organ donation becomes too great, the temptation not to do everything to give these babies the chance of life for themselves, must surely be present even if not given into? And once the mother has actually seen her child, there is the possibility that she may change her mind about having the organs removed. How will this be handled if the principle reason that she has been encouraged to continue the pregnancy has been to save the lives of others?
These are all important questions to consider if the practice is going to become more widespread than just those very rare cases in which women spontaneously volunteer to do this.
Most women carrying a child with a reportedly lethal abnormality experience considerable pressure from medical staff to have an abortion. To suggest continuing with a pregnancy in such circumstances has up to now been regarded as cruel and imposing unnecessary suffering upon the mother. How is it that abortion in these circumstances suddenly becomes the ‘wrong’ thing to do only if the baby’s organs can be used to save others?
If parents choose not to abort because they will love their child for as long as it lives with whatever abnormalities it has, then I can see no ethical objection to a request being made for consideration of organ donation if the child dies. Even then however the diagnosis of brain death can be difficult in anencephalic children. In cases where doctors have attempted to treat those nearly dead as “good as dead” already, predictable loss of confidence in transplantation has followed.
Organ donation rates rose dramatically at the Royal Devon and Exeter Hospital from 1988-1994, when the controversial practice was instituted of ‘non-therapeutic ventilation’ of patients who were not brain-dead but were thought to have a hopeless prognosis from intracranial bleeds. The Department of Health abruptly stopped the practice in 1994, advising that ‘in cases where the clinician’s intention in referring the patient to intensive care is not for the patient’s own benefit but is to ensure his or her organs can be retrieved for transplantation, the practice would be unlawful’.
The probability of similarly unlawful processes occurring seems to me quite high here when organs are so scarce and this is being suggested as a method of relieving the shortage on a significant scale. Cases like the one described at the Glasgow meeting, will be very few and far between and fully informed consent for mothers asked to consider doing the same is crucial if the whole endeavour of increasing donations in this way is not to backfire as it did in Devon.
Dr Trevor Stammers is Programme Director in Bioethics and Medical Law at St Mary’s University, London, and editor of a journal, The New Bioethics.