I realize that the title of this post might sound as though I’m equating brain death and fundamentalist religion. As tempting as it is sometimes to do so, I’m not. What I’m more interested in is a story I came across by way of ScienceBlogs Big Kahuna blogger P.Z. Myers last night, mainly because it brings up some serious ethical issues, aside from any religious issues. P.Z. tackled the story as he usually does tackle stories involving religion, with all the subtlety of a jack hammer in a glass factory.
I’m not saying that I’ll necessarily be subtle, but I do have some actual, hands-on experience dealing with just such issues. While it’s true that I haven’t come across a situation quite as distressing as the one described or a family as recalcitrant, I can say that it’s incredibly easy to be dogmatic and outraged from the comfort of sitting behind a keyboard and never having had to sit down with parents whose child has just been declared brain dead and had to discuss the implications of that. Back in the days when I was a resident on the trauma service and when I moonlighted as a trauma attending, there were a couple of cases where I had to do just that, and several more more cases where the brain dead patient was a young adult. It’s never easy, and I’m glad I don’t have to do that any more.
But, first, let’s look at the case.
From a strictly medical standpoint, as far as I can tell from news reports, this case is crystal clear. Twelve-year-old Motl Brody is dead and has been dead at least since last week. His body continues to function because he is on a ventilator and because powerful medications stimulate his heart to keep pumping. However, his brain is dead:
Unlike Terri Schiavo or Karen Ann Quinlan, who became the subjects of right-to-die battles when they suffered brain damage and became unconscious, Motl’s condition has deteriorated beyond a persistent vegetative state, his physicians say. His brain has died entirely, according to an affidavit filed by one of his doctors.
His eyes are fixed and dilated. His body neither moves nor responds to stimulation. His brain stem shows no electrical function, and his brain tissue has begun to decompose.
“This is death at its simplest,” the hospital’s lawyers wrote in a court filing.
It’s probably worthwhile here to discuss briefly what brain death is and how it is diagnosed. The concept of brain death emerged in the 1960s and 1970s as medical technology advanced to the point where it was possible to keep bodies alive with the use of ventilators and drugs even after the brain has ceased functioning. Over about a decade, complicated by the case of Karen Ann Quinlan, there was a debate over whether death should be declared when the higher brain functions ceased or when the function of the entire brain ceased. By 1980, a consensus formed that death of the whole brain should be the standard for judging brain death, resulting in the Uniform Determination of Death Act was proposed. It has since been adopted by most states and defines death thusly:
Determination of Death. An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards.
But what does this mean “where the rubber hits the road,” so to speak? Most lay people know what “irreversible cessation of circulatory and respiratory functions” means (your heart stops beating; your lungs stop breathing; and they can’t be restarted again), but how do we figure out if someone’s whole brain has ceased to function, other than its belonging to a homeopath or a creationist? The things neurologists or other physicians who determine brain death look for include:
- Profound coma. A corollary of this
- Lack of cerebral motor responses to pain. Practically, this means that, under no sedation, there is no response in the form of movement to painful stimuli, such as pressure on the supraorbital ridge (the brow) or the nail beds.
- Absence of brain stem reflexes. These reflexes depend on brainstem function and include the pupillary light reflex, ocular movements (the oculocephalic–”doll’s eye”–and vestibulo-ocular reflex–tested using the caloric test), corneal reflexes (tested by touching the corneas lightly with a cotton ball to see if the patient blinks), and pharyngeal reflexes (the cough and gag reflexes, which are commonly tested by jiggling the endotracheal tube, endotracheal suctioning, and a tongue blade).
- Apnea. In brain death, the patient has no voluntary respiration. Details are here, but in brief this apnea is usually tested by disconnecting the ventilator, supplying plenty of oxygen, making sure the patient’s systolic blood pressure is at least 90, and waiting for approximately 8 minutes, looking for any signs of breathing.
More information on brain death is here.
Although brain death is generally considered a clinical diagnosis, and confirmatory tests are normally not strictly necessary, in every case I’ve dealt with a nuclear medicine scan, specifically a cerebral blood flow scan, was usually done to confirm no blood flow to the brain. I can tell you that it’s truly distressing to see such a scan that does not light up at all where the brain should be.
One common misconception is that brain death is not “real” death, that it’s a “lesser form” of death, and that disconnecting the patient from the ventilator and other life support is “letting the patient die.” What needs to be understood is that brain death is irreversible. The patient is no more likely to get better than a patient whose heart has stopped. The difference is that medical technology can keep the heart pumping and the lungs breathing for days or sometimes even weeks after the brain has died, hence the difficulties.
In the case of Motl Brody, the reason there is a conflict is because he has a brain tumor that has resulted in brain death, but apparently some sects of Orthodox Jews, including the one to which Brody’s parents belong, do not accept the concept of brain death, but rather only accept death as occurring when the heart and lungs stop functioning permanently. Consequently, because a machine is keeping Brody’s lungs ventilating and medications are maintaining his blood pressure, they do not view him as dead.
In the case of most patients, especially children, with brain death, doctors do everything to work with them to help them to understand the situation. it’s not as though physicians start heading for the plug to turn off the ventilator the next minute. There are frequently multiple conversations between physicians and family, clergy and family, social works and family, and multiple combinations of the the above. And, almost always, the family comes to accept the situation and allows the medical staff to disconnect the life support equipment. Indeed, having had the unfortunate task of disconnecting a child with massive head trauma from the ventilator while the parents held her, I can say that accepting that I wasn’t “killing” the child was far more difficult than it should have been, given my knowledge. It sure felt like it.
When a child suffers brain death, it’s incredibly difficult for the parents to accept that the child that they love is dead. After all, the child is still warm, still smells like their child (and smell is a very primal sense), still has a beating heart, and still looks like a child. It doesn’t take religion for parents to go into profound denial over the true situation. However, there is no doubt that religion can be a powerful force that can reinforce such denial, but something as simple as a parent’s love for his or her child. Accepting the concept of brain death goes against every human instinct with regard to telling when someone is truly dead. Throughout thousands of years of human history, it was obvious when a person is dead. Now it’s possible to be dead and not appear so, thanks to the technology of the last 40 years or so.
Does this mean I’m letting fundamentalist religion off the hook for this? Of course not. But I don’t view it as such an overarching villain in this case, and I think of the family and parents more than I do of religion. Nor am I saying that medicine should be subservient to religious beliefs. Anyone who’s read this blog knows that certainly isn’t the case, and I would refer readers to posts like these to remind them. I’m just not inclined to use this sort of case to gloat; the child is already dead. It’s not analogous to the cases where I’ve railed against fundamentalist religion causing people to rely on prayer instead of medicine, even to the point of causing a girl to die from diabetic ketoacidosis. All it is doing is motivating them to insist on keeping a corpse’s heart beating. In the grand scheme of things, that’s not nearly as horrific.
Don’t get me wrong. it’s still bad. For one thing, no one who hasn’t taken care of a brain dead patient can understand how depressing it is. The nurses know it’s a futile effort, and unless there is a purpose to it, as in a plan for harvesting the organs, the longer a brain dead patient stays in the ICU, the more corrosive the effect on staff morale. Moreover, it’s a huge waste of resources, tying up an ICU bed and costing thousands of dollars a day to maintain. Finally, as bioethicist Art Kaplan says:
Arthur Caplan, a professor of bioethics at the University of Pennsylvania, said physicians aren’t obligated to provide care that can’t possibly be medically helpful.
“Doctors are well within their rights to say, ‘We are stopping,’” he said. “I don’t think medicine can become subservient to religious, spiritual or mystical hopes and beliefs concerning how to manage death.”
Most physicians would agree with this, but we also realize that the family is made up of human beings who have just suffered a horrific loss. That’s why an incredible degree of flexibility is usually used when dealing with such situations:
Dr. Edward Reichman, an associate professor of medicine at Albert Einstein Medical College in New York, said the question of how to accommodate religious beliefs regarding brain death comes up occasionally in New York, where there is a large population of Orthodox Jews.
While there is intense debate over whether to accept brain death as the spiritual end of life, hospitals usually find a way to work through it, he said.
“More often than not, the medical team … will accept the wishes of the family, especially if cardiac death is anticipated in a short window of time,” he said.
And, indeed, in most cases it is more or less a moot point. It’s unusual for such situations to drag on for very long. With the death of the brain, the autonomic outflow to various organs ceases, and it doesn’t usually take long for them to start shutting down. Although prolonged survival as long as a few months has been reported, in most cases brain death is followed fairly rapidly by heart and lung death within a few days at most. Indeed, in the case of potential organ donors, it not uncommon that fairly heroic measures are required to keep the blood pressure stable and the blood sufficiently oxygenated for long enough to secure permission, make all the arrangements, have the transplant team arrive, and get the donor to the operating room for organ harvest. It’s fairly unusual that there isn’t some flexibility, and even more unusual for a family and hospital to be unable to come to a resolution to the point of the hospital going to court.
As much as I’m alarmed by the tendency even in medicine to give undue deference to religious beliefs rooted in an understanding of the world hundreds or thousands of years old, especially in issues such as embryonic stem cell research, “freedom of conscience” laws that allow pharmacists to refuse to fill lawfully written prescriptions on the basis of their beliefs and thereby essentially imposing their religion on others, and attempts to insinuate religion into medical practice inappropriately, in this case I’m not quite so militant. Motl Brody is dead after a long illness. His parents, through some misguided religious view, think that they have to fight to have all measures continue to be used, even though they understand that Motl is not going to recover. A delusion? Arguably yes. Still, I can’t force myself to be outraged that religion has led to this; parents in such a state take very little to cling to what they love. I leave that to others. Right now, all I can manage is sadness for them and their child.