These stories are always wrapped in an unimaginable personal tragedy. In this case 12 year old Motl Brody has died of brain cancer. He has been pronounced brain dead by his doctors, who report that there is no brain activity, not even in the brain stem (the most primitive part of the brain).

Brain death meets the legal definition for death – so Motl Brody is dead. However, his body remains in the hospital, on a ventilator, and receiving medication to keep his heart functioning. This is because his family are orthodox Jews and according to their literal interpretation of scripture death is defined as the heart stopping. Therefore, in their eyes Motl still alive and treatment should continue.

According to reports, the family is not in denial about his condition and the fact that he has no chance of recovery. This is not about clinging to a false hope. Rather, they are simply trying to adhere to the dictates of their faith.

This is not a unique occurrence. Typically in this situation the hospital simply waits for the heart to give out as well, in which case the controversy is resolved. However, Motl’s heart may keep beating for days or weeks if ventilation and medication continue.

Neither is the belief that life is defined by a beating heart unique to orthodox Judaism. Two years ago Cho Fook Cheng, a 72 year old Buddhist, was declared brain dead following a cardiac arrest, but his family fought the removal of care because his heart was still beating. They proclaimed their Buddhist belief that life and consciousness reside in a beating heart.

Several important issues arise out of these situations. The first is a straightforward question of medical science – what are the biological implications of clinical brain death? Here there is no controversy. By the conservative standards in place, if there is adequate evidence for loss of all brain activity or lack of any blood flow to the brain, there is a zero chance of recovery. Medical errors are always possible, but short of a flat-out mistake, there is no coming back from brain death.

There is also every reason to believe that the absence of all brain activity means the absence of consciousness. There is certainly no credible evidence for consciousness absent brain activity.

It is therefore perfectly reasonable to legally equate brain death with death. In short, people who are brain dead are dead.

When brain death has been properly documented, therefore, what are the obligations of medical professionals? At that point (and again, this is not controversial) the deceased is treated with the respect due a corpse, but not the rights of a living person.  Often, out of consideration entirely for the family and loved-ones, those who are brain dead may be kept briefly (hours, certainly less than a day) on life support, to give the family a chance to say farewell and to accept the situation.

Traditionally in this situation physicians are gentle and caring, but firm and unwavering in their diagnosis and the implications of that diagnosis for care. In most cases, this works very well. Most families are reasonable (even if understandably emotional) in these situations and everything goes smoothly. The press does not report on these cases. They do when the family decides to defy the clear dictates of the medical facts.

The potential harm done by such cases is increasingly important. Keeping someone who is brain dead in an intensive care bed on a ventilator may be using up resources that would then not be available for another patient. ICU beds can often become scarce when a hospital is busy. Further, the expense of such futile care can be enormous – and this is a financial burden the health care system can not afford.

The consequences asside, the primary ethical consideration here is who gets to decide what treatment is appropriate. This is very different from a situation where a person or family is refusing medical interventions suggested by doctors. Adults have the right to refuse whatever interventions they want for their own reasons. (Children are a different matter.) Here we are talking about families demanding medical intervention that is not warranted.

Both legally and ethically this is not controversial ether. Health care professionals cannot be compelled to deliver medically futile care.  There is no ethical compulsion to do so. In these cases, when a person has been legally declared brain dead, the hospital and doctors are no longer ethically or legally compelled to treat them as anything other than a corpse (even if that sounds cold). They are certainly not compelled to give any medical treatment, which is by definition futile.

I have no doubt that if in this and similar cases if the hospital simply removed all treatment and shipped the remains down to the morge, they would prevail in any lawsuits that resulted. But there’s the rub – they want to avoid those law suits. Therefore they seek legal permission to do so ahead of time. The family may also seek a legal injunction against removal of care. So cases like this can wind up in court, even when there is no real legal issue at stake.

It seems to me that such cases should be decided ahead of time by law or precedence – if the legal definition of brain death is met, then doctors and hospitals are allowed to withdraw all care and are protected from being sued simply for doing so.

But the thorniest question here is the religious one – do individuals and families have the right to impose their religious beliefs on the system? Again, if they are simply refusing care on religious grounds, that’s their right. If treatment needs to work around their religious beliefs, that is appropriate. But do they have the right to demand medically futile (and arguably unethical) care based upon their personal religious beliefs. I believe the answer is no.

Arthur Caplan, a professor of bioethics at the University of Pennsylvania,agrees. He is quoted as saying:

Doctors are well within their rights to say, “We are stopping.” I don’t think medicine can become subservient to religious, spiritual or mystical hopes and beliefs concerning how to manage death.

Personally, I also think this is mistake from a religious point of view. Religious faith is not a proper basis for a scientific claim. It is easy to understand why the belief emerged thousands of year ago that the point of death can be defined as the moment at which the heart stops beating. That was a practical definition for a pre-technological society. But why try to apply that today? Why should we be beholden to the scientific beliefs of primitive societies from the distant past?

I also don’t quite understand how, in these cases, the family concludes that treatment must continue. Even if you take as an article of faith that the person is still alive because their heart is beating, that does not mean you must continue all care. Again, this is not about taking steps to actively end the person’s life, but rather just removing futile interventions. Take them off the ventilator and stop the medications, (let nature take its course) and their heart will stop beating fairly quickly.

In other words – how we define the moment of death in these cases is only an issue if one also believes that being alive means that all medical interventions, no matter how aggressive and futile, should always be given. Is it not reasonable and more consistent to say that, even if the person is still technically alive by scriptural definition, their condition warrants removal of heroic measures to keep the organs going?

Finally, I think it would actually be a great favor to families for these situations to more legally defined ahead of time. As I said, these cases are always tremendous personal tragedies. I don’t think the family is being helped in any way by having to wrangle between common sense, the medical system, and their religious beliefs. It would be better for all concerned if, once pronounced legally brain dead, medical care was removed as a matter of course. The option of demanding futile care for the dead should not exist.