Statistics from Altmetric.com
Try the following nightmare. You are a policeman on the Titanic whose job is to decide who gets a place on the lifeboats—there is only room for one in three. “First come, first served” won’t work as the crowd is swirling around you shouting, threatening, disorderly. How do you choose? Youth before age?—the young have many more years to gain. The fittest first?—better equipped to survive. Those who have been in a shipwreck before?—you know they can handle it. The rich and famous? Your own family and friends? The people with the loudest voice? The crowd is becoming menacing. Coolly you reach into your pocket and pull out a slim volume “Lifeboats—an evidenced based approach”. You start to read “do more good than harm . . ., fairness and equity . . ., the greatest good for the greatest number . . .”. You turn the page—the rest of the book is blank. You wake to find you are a simple chest physician with a patient who needs a lung transplant. Not enough donor organs, not enough evidence, not enough consensus. Should decisions be made by individual doctors on behalf of individual patients or is there now enough experience and agreement for guidelines and prospective research? The case report described by McCloskey et al 1brings up a number of medical, ethical and economic issues where the evidence is lacking but decisions still need to be made.
Ideally we would like to know when a lung transplant will succeed and when it will fail, and to use this information to inform our decisions. Somewhat surprisingly, the disease causing the lung failure seems to make little difference to outcome and survival is similar for pulmonary hypertension, cystic fibrosis, emphysema, and fibrosing alveolitis. Similarly, we would like to know which preoperative states predict a bad outcome. At present we know that cachexia, diabetes, carriage of MRSA, and intubation with ventilation are all compatible with a good outcome and so are not absolute contraindications. However, there have been too few in each of these categories to know the true impact on long term survival. Conversely, most transplant centres have turned down patients carrying M tuberculosis orAspergillus and so these risks can only be guessed at. The patient in this case report received advice from three different centres at a time when experience was evolving and different centres came to different decisions. By now most centres use fairly similar selection criteria but differences still exist and these can be exploited by a persistent patient. Such “centre hopping” is undesirable for a number of reasons. Firstly, it leads to confusion and cynicism together with the accusation that specialists do not know what they are doing; secondly, everybody wastes a lot of time; thirdly, and most important, it cannot be the fairest way of allocating donor organs. If all transplant centres agreed on their criteria and maintained an evolving consensus this could be avoided, but it might have the disadvantage of stifling diversity and limiting experience gained from trial and error.
The patient’s family in this case report are likely to argue that a uniform approach in 1992 would have prevented their son from getting a transplant and so have denied him five full years—and therein lies the ethical dilemma. Should transplant decisions be made for the good of the individual or for the good of the wider community with lung failure? As doctors we usually act as advocates for an individual. If “my” patient gets a transplant and “yours” does not, I have done the best I can for “mine”. Too bad about “yours”. Now let us consider the donor’s point of view. Would the donor prefer “my” patient or “yours”. Probably he would simply want to be sure that someone benefited and that this benefit lasted as long as possible with the least additional distress. For example, a prolonged postoperative stay in the intensive care unit with subsequent death would be the worst outcome with a waste of donor organs and an increase in total suffering. The transplant unit and the NHS would probably share this point of view since it combines the greatest good for the greatest number with the best effect on staff morale and the best use of money. However, ensuring best long term medical, ethical and economic outcome is difficult to achieve. What do we do when the person on the transplant list is articulate, influential, or simply shouts very loudly? The case report argues for individual autonomy and supports the individual against a paternalistic and patronising medical machine. This is an attractive argument but ignores completely the rights of quieter individuals on the waiting list. Furthermore, the decision to do a second transplant can be questioned both on the grounds of equity and on the possibility of poorer outcome after failure of the first.
In my view the overriding priorities should be to ensure the best possible use of scarce donor organs and to ensure the fairest system of distribution by treating all potential recipients as entirely equal. The first requires ever improving predictions of long term outcome. Current evidence is poor and incomplete but, by pooling knowledge, sharing consensus guidelines, and testing areas of uncertainty by prospective trials, these can all get better. The second priority of fairness is harder to achieve. Persistence, debating skills, and sheer bloody mindedness can be powerful in influencing doctors’ decisions, not least by wearing them down and occupying time. The doctors involved in the care of the reported case probably had a very difficult time in meeting the family’s arguments and coming to a correct decision. Some consensus guidelines would have helped them to get it right and would have left less room for negotiation. Nevertheless, most doctors are human and resent having these key decisions made by a rule book. Transplant surgeons are more human than the rest of us and may find it even more difficult, particularly if the rule book constrains not only their clinical judgement but also their drive to innovate and explore the unknown. Has the time now come to write the rules?
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.