Science is often given short shrift because it is hard work, and makes our collective heads hurt. In a world where objective truth receives a daily thrashing we need to remember what science is, and why it matters most. Science doesn’t care about our opinion or our feelings. With that polite, but forthright caveat out of the way, I am largely unconcerned if you regard the following as strident or rude.
Science is imperfect, but it is also our best defense against the 3 B’s: bias, bollocks, and bulls**t. This is why we need people brave enough to be confrontational, skeptical, and unpopular. Science is a leap, not of faith, but of thought. Science is also never beyond challenge: quite the contrary. The issue is when society allows tested truths to be rejected, because we “just don’t like them”. You can certainly have your own opinions; you just cannot have your own facts. Science is truly “beyond belief”.
Following that preamble, let’s focus where it really matters, namely what all of this means when the rubber hits the road, and patients enter the modern Intensive Care Unit. Two recent cases of confirmed clinical brain death following anoxic brain injury have stirred passions and debate in the placid and predictable nation of Canada. In the benighted province of Ontario the families of Taquisha Mckitty and Shalom Ouarouna have refused to recognize brain death as real death, and have been emboldened by the courts. Medicine is rarely only about the science, but in these cases it has to be.
In the United States, there is also the recent case of Trenton McKinley. According to reports, this 13 year old from Alabama was so close to death that his parents agreed to donate his organs. It is unclear if he was merely thought brain injured, or actually brain dead, and by what criteria. Regardless, he certainly did awaken. The family is giving credit to God, while the organ donation community may be wondering what impact this has on public trust for organ donation. The Canadian cases are different because the declaration of death follows many clinicians performing many examinations, ordering many tests, and with no change over many weeks. The families deserve all the system can offer in terms of sympathy and support. However, let me be scientific and clear, these patients have been medically dead for months.
This is not merely disagreement over whether we should use machines for humans with severe brain injury, this is whether we ventilate the medically dead. In these two cases there is no chance of surviving, let along recovering. There is no blood flow to either brain bucket or brain stem. This means that no machine, no treatment, or no amount of prayer can change this. This is not coma or organ failure, and that is why it is also different than high profile cases such as Alfie Evans and Charlie Gard, even if the emotions are the same. We are no longer discussing the major D, disability; this is biggest D, death. If we cannot agree on what defines death then forget that other important D, organ donation.
While this may seem harsh, my personal opinion is that these two cases should no longer be called “patients,” but rather “bodies” or “corpses”. I realize that for some (perhaps most, and perhaps even this journal) my scientific language might seem mean-spirited or brusk. Perhaps the only thing we can agree on is that reasonableness has failed, and that definitions are becoming more important than communication. Sadly, words are becoming weaponized, rather than the soothing balms we would prefer. Regardless, if we allow families to decide when patients are dead then, much like these patients, we will pass a point of no return. Moreover, if this can happen in (sensible and boring) Canada then I suggest other jurisdictions assume the brace position.
The Ontario courts have so far acquiesced to the families. They have ordered that these “patients” be kept on life support machines, even though there is no life left to support. While I am not privy to the legal nuances, in similar cases healthcare workers were also ordered to administer chest compressions. If so then this is not only futile, but may feel like committing bodily assault. These medical teams are also likely forced to round and review blood work in a pointless charade that is helping nobody and hurting everybody. The families have stated that only God can decide when a patient is dead, but then failed to appreciate that he or she already has. Imagine if the legal system faced families stating only God decides guilt or innocence, and therefore earthly laws do not apply. Presumably lawyers would quit or burnout, just as our nurses are doing in record numbers.
Obviously, doctor does not always know best, and doctors are only asking to comment on this erstwhile patient’s earthly life. In these cases it is actually the family and the judiciary that is playing God. Moreover, if we can agree that God decides then let’s remove the man made machines, and let the big guy reveal his or her plan. Moreover, let’s accept that we have a legal system that is not entirely fit-for-task when the right to refuse morphs into the right to demand, and without the need to justify. In the process we are preventing these families from grieving and moving on. We are also further asphyxiating a public health system that is chronically short of breath.
These cases are the most recent example of a dangerous and growing trend. We seem to be increasingly championing religion and pillorying science, rather than striving to find balance. Autonomy is a cherished value and long may it thrive. The problem is that we now seem to be promoting fundamentalism: the right to believe whatever you want and without scientific challenge. Albert Einstein reportedly stated that “science without religion is lame; religion without science is blind”. We need space for forthright debate, but also to accept when magical thinking has to end.
Peter Brindley, professor in the Department of Critical Care Medicine, Department of Anesthesiology and Pain Medicine, and the Dosseter Ethics Centre, University of Alberta, Edmonton, Canada. Twitter: @docpgb
Competing interests: None declared.