Brain death and fundamentalist religion

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:

  1. Profound coma. A corollary of this
  2. 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.
  3. 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).
  4. 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.

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I have no medical or psychological training of any kind, but I had a similar response to this story. Their religion is only the justification these parents are grasping in order to support their denial. In the absence of religion, they'd just find another mental crutch, but the situation would not be any different.

Devil's advocate:

Can one manage sadness for the next patient who needs that ICU bed, that ventilator, that cardiac equipment, but who will not get it because of this situation?

What if that patient's family was told the reason why their loved one can not get the care they need?

Genuine question: Would it be ethically appropriate to ask Mr. and Mrs. Brody to purchase the equipment their son is using, thus freeing up equipment for the next patient who needs it? And then moving him out of the ICU (to a long term care facility, for example)? How about paying for a private nurse to monitor him, instead of occupying the nursing resources needed for patients who need it?

Between this and PZ's post I have all sorts of questions for the members of the religious order that is involved here. Most of them are related to the idea that person is dead when their heart stops beating and the lungs stop. These things may have been settled within the group, but as an outsider I can think of all sorts of oddities from the given information.

Heart and Lung transplants seem to be fraught with all sorts of dilemmas for members of this group. A member of this group would seem unable to donate a heart or lungs, since as far as I am aware the organs need to be functional right up to the point they are removed from the donor. On the other end of things, if a patient(and practitioner of the religion) receives a heart or lung(s) or both, would the patient be considered dead by the religious group since their original organs no longer worked? There is also the possibility the donor be considered the one alive and the recipient is dead by the religious group, since the working organs are the donor's organs. Maybe after surgery who ever is alive would be considered to be of some form of undead or something?

I am not participant of the religion or a scholar of said religion, so my questions and musings may be of simply not knowing or understanding their internal logic. Still, there is a Monty Python, "He's not dead yet!" aspect to it all that leaves me wondering about things.

By William Dyer (not verified) on 12 Nov 2008 #permalink

-In the absence of religion, they'd just find another mental crutch, but the situation would not be any different.-

Or they would move to acceptance faster. They already know it's hopeless but the orthodox law for them is the law. That is all.

The equipment would most likely be out of reach of most peoples budget.

By Richard Eis (not verified) on 12 Nov 2008 #permalink

You've written this beautifully, Orac. I hope it is used as a case study for nurses, physicians and hospital ethics boards.

I was a critical care nurse, and I agree with your perception. I remember vividly caring for a brain dead "body" patient, orthodox Jewish, whose blood pressure was only gradually failing despite full pressor support. The family was adamant that he be given a full court press when his heart failed, and so I whumped on his chest, methodically breaking ribs - CRACK - SNAP - CREAAAAAK - SNAP while knowing that the only end would be a battered body, still dead. It was absolutely horrific and miserable, and he is only one illustrative case. I don't know of a critical care nurse who hasn't had the same kind of experiences.

But I've been mulling over this case for a few days trying to address the concerns of the religious dogma that everything be done in the face of brain death and certain death off artificial life support. I think the key lies in the terms, artificial and support.

Here's my best stab at this:

The body's functions should be supported, but not supplanted, by artificial means. So if patients can initiate breathing, that would be the bottom line qualifier for continued life support.

When breathing is not even instigated by the patient, support is inadequate and supplanting the vital functions negates the life force. This would be signal that death - all aspects of it - has arrived, and that artificial means of organ function (specific language different from LIFE support) should be withdrawn, death declared, health care withdrawn and post mortem care initiated.

@ Constance Reader: Other reports stated that the patient's condition was so unstable (probably due to blood pressure, circulation and heart function instability, but I couldn't find the specifics) that he wasn't a candidate for home or skilled nursing facility care. And given that his family wanted him resuscitated, I don't imagine that nay nursing agency of SNF would accept him.

What do you think?

Thanks for the answers, Annie. I thought about that after I posted the question, and if no long term facility would offer him a bed then we are back to square one.

I just can't help but think that, in a time of ever-dwindling healthcare resources, there may be a patient coming into the ER at any minute who needs that bed.

We are taught that in the best of circumstances we are partners in our patients healthcare decisions. The prinicple of autonomy holds that a patient, or that patients surrogate, should have the ultimate authority in medical decision making. Moreover we are taught that our role is fiduciary...that our behavior must have the patient's best interests, and only the patient's best interest at heart.
The trouble is that this childs death is hardly the best of circumstances. A number of troubling questions arise. First who are our patients?
In that sense the definition of 'our patinets' broadens beyond just this child, to his parents, his community and our nation. Specifically this child is using up resources which we can no longer afford to squander (if in fact we ever could).
A more fundamental issue is that somehow these poor parents have been allowed to sink into the illusion wherein they feel they are making life and death decisions. In this case the decision is foregone. Period. The ultimate cruelty of this most cruel circumstance is that these folks have not been let off the hook. They must be helped. Thye must be nurtured. They must be guided to see that in their fervent desire to prolong this child's life they are only succeeding in prolonging his death. What parent would really want to do that?

By ICUPhysician (not verified) on 12 Nov 2008 #permalink

I've always failed to grasp the connection people such as this make between "God's will" or what ever term they choose to use and the implementation of artificial life support.

By stevogvsu (not verified) on 12 Nov 2008 #permalink

It should be noted that the "right to life" posse now claims that doctors are routinely murdering patients to harvest their organs:

http://www.covenantnews.com/abortion/archives/047784.html -

MELBOURNE, Australia -- A prominent Melbourne doctor has written that, contrary to popular belief, most organ donations take place before the donor is actually dead. He argues that the vague criterion of "brain death" has blinded potential donors to the...

By Pierce R. Butler (not verified) on 12 Nov 2008 #permalink

Disclaime: I'm not a halachic scholar. I'm not even Jewish.

I have, however, done a bit of reading on the subject of "end of life" in Jewish law and the story still seems strange to me. The issue of technical death is not moot in Judaism, because saving a life (pikuach nefesh, literally saving breath) is one of the only exemptions for the constraints of the Sabbath. Rabbis went into the issue two thousand years ago to draw the very lines under discussion today, and they were quite pragmatic. More recent decisions have, too: "playing God" is discouraged past the point where it becomes fruitless.

The story of the insistence on CPR for a dead patient bears directly on this. CPR is effectively mutilation of the dead, and that's a major no-no -- it's only justification would be if there were a real chance of actually saving a life. Which, last I checked, religious law defers to the experts in the field: attending physicians. So the CPR was not only a bad idea medically but a serious violation of Jewish law (see disclaimer.)

Likewise the boy in question.

I truly wonder if the parents aren't making up the religious issue without authoritative guidance. It might be appropriate to bring the matter before a bet din of their sect, on the grounds that according to the attending physicians the family is asking said staff to desecrate a corpse. That would be major mojo, and the staff would (IMHO) have every justification for insisting that if it's that serious a mitzva then one of the sect should attend the corpse -- including on Shabbos. Put up or shut up.

By D. C. Sessions (not verified) on 12 Nov 2008 #permalink

Disclaimer: I'm not a halachic scholar. I'm not even Jewish.

Followup: I just noticed the note that the family hasn't been to the hospital since July. Major "WTF?" there. Visiting the sick is also a big-time mitzvah after all. They're sure acting like they think he's dead.

So if they're not sitting shiva why aren't they visiting?

This just reeks.

By D. C. Sessions (not verified) on 12 Nov 2008 #permalink

@ Pierce:
Surely these donors hear the Monty Python sales pitch
"..........better hope there is intelligent life in outer space cause there is bugger all here on earth"

I used to frequent a Usenet group that was populated with Orthodox Jews. This type of situation had arisen with one of the members, with her father placed on life support. According to the people on this board, most of whom were well-versed in halacha, once life support measures have been started removing them is equal to murder. That's likely the belief involved in this situation as well.

stevogvsu: I think you misunderstand. The parents are not following "God's will" but "God's commandments". And since they are hasidim, they will be following those commandments as interpreted by their Rebbe. In fact, trying to persuade the parents to change their mind would be a spectacular waste of time. It would probably be much more profitable to speak to their Rebbe. (Does anyone know what branch of hasidism they belong to?)

@Pierce R. Butler

I remember when this article came out, it was a disturbing time. The last thing we need, ever, is another reason for people to not donate organs. It's unfortunate that whenever these articles jump out we have the same (type of) people commenting. Some are "Health Care Practitioners" who say they don't become donors because of all the terrible mistakes we make in the process, the old 'You get worse health care' argument raises it's head (apparently I check the donor status of patients as they come into the ED and triage donors as lower priority, news to me), and of course the my friend/my cousin/my uncle/some guy I heard about once crowd, with the "So-And-So was diagnosed as brain dead and then just before they stuck the scalpel in him he woke up and now he is fine 30 years later, doctors are evil!" argument. It may be unfair for me to criticize the neuroscience practitioners of yesteryear, but they had no access to the tools and guidelines we use today to assess brain death, and I'm sure these things may have happened, once in a blue moon.

These sort of anecdotal, uninformed opinions though, are widely believed and have the unfortunate effect of throwing hope on an already distressing situation (Not that this seems to be the case in the patient in question). None of the people who frequent scienceblogs will be surprised by the ability of humans to rationalize illogical beliefs to shore up themselves psychologically. Religious or not in cases like this, our worst enemy is the lack of understanding, and the difficulty of pushing that understanding rationally and compassionately through a layer of despair, urban legends, and personal beliefs.

By CaladanGuard (not verified) on 12 Nov 2008 #permalink

Well written, Orac. Compassionate and human. I have been disillusioned with PZ lately for what I can only describe as his hardening of beliefs, his narrowing of reasonable views, his embrace of bitterness and anger, his loss of whimsy and fun.

Thanks.

The court situation has been covered in depth by the Washington Post for the past week - do a search for "Motl". (Note: free registration at the site may be required.)

By Fig Neutron (not verified) on 12 Nov 2008 #permalink

I was wondering if this would show up here, I am glad to see it has. I heard about it on our local NPR the other day. I totally agree that this boy should be allowed to die in the way nature intended. I do want to make a small point, however, which is that the Orthodox church is not unanimous about their definition of death. Some congregations say it happens at brain death, others say it's when the heart stops. So for the parents to be claiming a religious basis for forcing this kid to stay alive should not be seen as a reflection on all Orthodox Jews. Motl's parents have a personal belief about death and are ascribing it to their religion. I think they are in serious denial, which is now leading to some awful consequences for the son. I don't know if my point comes off clearly but I just wanted to add my 2 cents on that.

The family are Bobover Hasidim. I don't know which Rebbe they follow--there was a split in Bobov. In any case, this view on brain death seems to be the usual one for Hasidim.

If anyone is interested in the Jewish view of brain death and the issues involved in organ transplantation the Halachic Organ Donor Society (www.hods.org) has information on it.

Orthodox Jew here. Mainstream rabbis like Rabbi Tendler (a bioethicist as well as a rabbi) would advise parents not to vent. Once you start a life-saving treatment, he opines, Jewish law forbids you from stopping it. I'm not 100% certain ventilators fall in this category, but many interventions do.
Bobover Chasidim might not consult a Modern Orthodox rabbi, however, preferring to abide by what their own Chasidic leader decides.

Very well written. It's difficult to imagine being in the shoes of the doctors, parents, or nurses, but you invoke empathy for all these positions.

By Epinephrine (not verified) on 12 Nov 2008 #permalink

evoke, not invoke. I need an edit button...

By Epinephrine (not verified) on 12 Nov 2008 #permalink

D.C. Sessions: Because to visit the sick they need to be able to know you're there. Someone even in an ordinary coma can't tell you're there, it's not really "visiting" them.

The point of such visits is, after all, to comfort and aid the sick, not to make the visitor feel better (both in a facial non-religious analysis, and in the Talmud, on a cursory examination online) - thus in this case there's arguably no duty to visit, because visiting in the proper sense is impossible.

If you can't - because of their condition - aid them either by comforting them or by providing some material alleviation of suffering, there's no (or far, far less of a) mitzvah to perform.

Nice to see some more knowledgeable showing up; I'm never comfortable offering my at-best-partial clues.

Thanks, people.

By D. C. Sessions (not verified) on 12 Nov 2008 #permalink

Having lived in a Hasidic neighborhood for many years, it needs to be handled very very carefully right from the beginning. I can imagine the many nasty phone calls the hospital and doctors involved are getting, and how the parents are avoiding contact. They haven't seen their child since July. They really are a cult and can be quite vicious. Call the police after only a couple threats, tap phones etc. You can nip that in the bud but must be early. Even if they want people to stop it can be too late to pass the word on to the new people getting the news and calling in new threats. Even after its all over, they could be getting threats for years. Years.

I recommend getting a Rabbi from their community involved at first sign of possible brain death. Has to be one of that sects Rabbis not the hospital one or from another sect. The Rabbi's will discuss amongst themselves what is brain death, which medication or machine constitutes intervention etc.

What a shame, the parents should visit their child. Annie 2

By I'm Annie 2 (not verified) on 12 Nov 2008 #permalink

Here are a couple more "they're cutting up live people for parts!" rants, for those who want to see how transplanters are about to get the abortion-provider treatment.

Note that the first may possibly have some merit, in that it's based on an article from NEJM; the second is clearly without error, since it features The Pope.

By Pierce R. Butler (not verified) on 12 Nov 2008 #permalink

I find it interesting that religious people want to embrace and deny modern technology at the same time.

It seems certain that any response to this must include compassion for the family who is losing a child. That being said, I think whatever anger there is really should find it's focus on the Rabbi(s) who have chosen this hard line approach.

While I understand the interpretive (as opposed to discretionary) nature of these sort of religious opinions, I find there something disturbing when religious leaders take obviously painful and dysfunctional stands on situations that cannot and did not exist whenever the religious documents in question were created.

It's one thing to take a hard line stand on clear prohibitions (do not eat pork), even if they seems odd in the context on modern living. I understand this, the belief that when rules are clearly stated, God is not subject to revision.

In contrast, though, when areas of silence or vague guidance are interpreted in certain situations there seems to a streak of demanding hardship and difference that underlies these decisions. In the age when the power to make a heart beat is not God's alone, to refuse to refine fallible, more-recent human interpretation of how to apply these prohibitions to modern life seems foolish, small-minded, counter to the belief that religious leaders should care for their followers.

having been there, I can tell you that it's absolutely devastating to be told your loved one is not going to wake up.That they are not going to get better, ever. That the machines are the only thing keeping them going.
It's like being slapped in the groin with a hammer and then being told to walk it off, you sissy. In these circumstances people will grab at anything to not have to face giving the order to shut down the machines. Fortunately, in my case, this responsibility was partially alleviated for me because in my case my loved one had foreseen the possibility and written a living will, which detailed that they were not to be kept alive in a situation like this.

It is a little hard to understand.
I guess there will be another court hearing Thursday. Hopefully they can get it settled.

I think if someone I loved were approaching death and life support was mentioned that I'd be consulting my Pastor. We have living wills with a check-mark next to these kind of choices, but I'm sure it's still hard.

having been there, I can tell you that it's absolutely devastating to be told your loved one is not going to wake up.That they are not going to get better, ever. That the machines are the only thing keeping them going.

It's easier if it's not the first time you face the issue. When my sons were born, a friend was downstairs in the same hospital's ICU with systemic mycoplasmic pneumonia that had crossed into her brain. Our mutual friends were cycling up and down the elevator.

Truly surreal. Her husband approved withdrawal of support at roughly the same time my boys drew their first breaths.

When my father was in the same situation two years later, it was a bit easier to take. I'm still glad that my mother had that responsibility; that's a key reason why my children and lover know my wishes and I have a living will on file.

Now, how many of you reading this have one so your next of kin don't have to face that?

By D. C. Sessions (not verified) on 12 Nov 2008 #permalink

I agree, excellent post.

I can't completely agree about not blaming the religion, though. If they were truly in denial and clinging to the rule to support the denial, I would be at least somewhat sympathetic. And I do think that's still possible. But even in that case, I can't let it completely off the hook since it's enabling yet another denial of reality.

But the source material for Myers' post seems to make it clear they are NOT in denial, that they fully understand and accept that their son is gone. That is in fact the main thrust of Myers' post: That even when the parents THEMSELVES would apparently otherwise pull the plug, their religion demands they actively fight to prreserve the body. If that's really what's going on here, how can we NOT blame the religion?

I noticed that the original article said "his brain tissue has begun to decompose".

If Motl's body continues to be kept in its present situation, this will very likely lead to unmistakeable proof of death. Is there any religious sect so oblivious to reality as to ignore putrefaction as evidence?

By Ktesibios (not verified) on 13 Nov 2008 #permalink

There's no medical duty to keep a legally dead body on life support measures.

The hospital's true liability comes from not having that ICU bed available when someone who is not legally dead needs it.

Move the kid to a regular room, with a vent, and whatever IV drugs he's on to assuage the parents.

Then wait for nature to take its course.

Any suit the parents file wouldn't make it past pre-trial motions - a black eye for the hospital's PR, but no more than that.

By Bill in NC (not verified) on 13 Nov 2008 #permalink

D.C. Sessions, the claim that CPR is mutilation of the body is not one that is widely accepted. It is an idea that is used most often by the more liberal(for lack of a better term) end of the Modern Orthodox and by the Conservative movements. If the heart is still beating then almost all Orthodox scholars would favor CPR.

Note also that there is a large amount of disagreement in Orthodox Judaism about what constitutes death. Traditionally either a beating heart or breathing was considered the relevant criterion. The disagreement in that regard is very old. Moreover, both opinions raise serious halachic concerns about a variety of modern medical treatments. For example, if one accepts heart stoppage as death then arguably a heart transplant is murder. Today, my impression is that most Orthodox scholars use the ability to breath as a standard. The Talmud does mention the case of someone who is decapitated and rules that someone dies at the instant of decapitation. This has been used by some to argue that brain death is analogous to decapitation. All of this is complicated by the fact that it isn't at all clear whether the Talmud intended any of these as absolute determinants or just general rules because they didn't anything better.

I'm inclined overall to agree with Orac about this. Moreover, definitions of what constitute "death" is precisely the sort of thing that medicine and science aren't very good at. We've generally reached consensus to use brain death as a criterion but its not a perfect criterion.

Sigivald, you are somewhat correct. Moreover, if visiting is sufficiently disturbing to the parents one could make an argument that they should actively not do so. However,

Ktesibios, putrefaction is not enough. Segments of a person's body can putrefy even as they are alive.

I find myself asking the same question as Jacob. Who is technically paying for this? The family or an insurance company? I would hope that, in this case, the insurance company follows their p/l and refuse to keep paying for "the care" of dead patient. If this cost was being paid for by the family then more power to them. Sorry if I sound cynical...

Joshua Zelinsky said "If the heart is still beating then almost all Orthodox scholars would favor CPR."

I believe that performing CPR on someone whose heart is beating is a good way to kill that person. The point of CPR (as I understand it) is to keep blood pumping for a few minutes so the heart can restart itself.

By Grep Agni (not verified) on 14 Nov 2008 #permalink

Okay, on the CPR thing - umpteen first aid courses I did said that you should only do CPR if someone's heart wasn't beating (as shown by no pulse). The last one I did said that you should do CPR if no breathing, as it was taking first aiders too long to determine there was no pulse. What's the latest advice on this?

CPR should never be performed on a patient with a pulse. EVER. Learn to find a pulse correctly and quickly and go from there. Rescue breaths are appropriate if there is no breath but there is a pulse, but chest compressions are a big no-no. I'm appalled that anyone was taught that. You can do serious damage to a patient if they have a pulse and you attempt CPR.

By Patience St. James (not verified) on 14 Nov 2008 #permalink

If a religious group wishes to establish facilities for the provision of futile medical interventions, it should be free to do so (at the expense of the adherents of the group). Medical professionals should be precluded by law from providing futile medical interventions so long as anyone in our society lacks adequate health care.

BB:

Mainstream rabbis like Rabbi Tendler (a bioethicist as well as a rabbi) would advise parents not to vent. Once you start a life-saving treatment, he opines, Jewish law forbids you from stopping it.

The problem is that are situations where ventilation is required to treat a person who may well recover. A friend of mine suffered acute pancreatitis last year. He was in the ICU for a week, some days requiring ventilation, his friends and family warned that he had an even chance between dying and surviving. Fortunately, he recovered, is now well, and as far as I can tell, suffers no sequelae.

Your rabbi's rule would force a choice, before the result can be known, between a) letting die an ill individual who might well recover, by never putting them on ventilation when it is needed, and b) keeping a body going through artificial means even after the patient is gone.

this entire argument is now moot, as the child was declared dead on friday night.

however, i find it disturbing that those who do not understand jewish law are commenting upon it.

some authorities hold that when there is brain death, even if on a ventilator, the person is dead and the machines can be stopped....most do not hold this way.

it is why many people have chosen to make living wills with the adendums of a dnr.

it is not that the parents thought the child would have a miraculous recovery...it was that they were under the halachic (judaic law) belief that to turn off the machines would be tantamount to murder.

as for the stories regarding the parents not visiting since july...these are false.

By Uncle Joe Mccarthy (not verified) on 16 Nov 2008 #permalink

One point that must be perfectly clear to all:

Jewish Law has NO place in an American court, period. Same for Sharia Law or any religious law.

Such religious cults are arrogant and hypocritical in the extreme. They say that "life is precious to the end" and that all measures should be taken to prevent death - by their definition. But, they do not ascribe that to others not in their cults.

Enough of ancient mythology affecting others that don't care to believe in such nonsense. The use of ancient myth to justify the unjustifiable must stop.

I'm not particularly religious, nor would this situation have ever had religious connotations for me (I used to be very religious). I am however, a parent. Not sure exactly what the motivations of the parents are - the not visiting thing really messes with my perception of the situation. But I know that no matter how irrational, I would have one hell of a time letting go. I'm talking fucking brutalizing agony at the mere thought of it.

I cannot know and hope beyond hope that I never do know, how I would deal with this if it were one of my boys. I like to think of myself as a fairly rational person. But considering that reading this post brought me to tears, I cannot say that I wouldn't hold out for some time. I know that I would be there until the heart and lungs stopped - not a goddamn thing could drag me away.

Uncle Joe: Not sure I understand your point. I agree that it's moot now that the body is apparently dead, but I never saw the relevance of Jewish law in the first place. What is relevant is that it apparently was their religious belief, regardless of denomination and theological interpretation, that they couldn't let the body die. And they fought to force continued medical support. That's the action most of us are criticizing.

If they were still clinging to some irrational hope or denial, I can be at least sympathetic. But that wouldn't make it OK, especially considering how far they'd taken it.

I think you are all getting this wrong. Orthodox Jews believe in an afterlife, beyond death. None of us can know what Motl Brody experienced during this past week, but orthodox belief is that it was part of a cleansing process, a necessary part of his life and that any suffering he incurred will be calculated when his life is judged following his death.Metaphysical...yes, Unprovable, perhaps, but this is the philosophical background the Brody's were operating under,not some sort of exagerated sense of denial, but rather an acknowledgement of another reality beyond death which scientists tend not to recognize.

DanDeMan: you state that Jewish law has no place in American court. That's kind of beside the point. What American courts value and consider is not "Jewish law," but the wishes of the family. When the family's wishes are dictated by Jewish law, Jewish law enters the court's consideration.

Overall: I agree w/Uncle Joe - it is disturbing seeing so many people (including the OP) speaking on Orthodox Judaism without knowing or understanding it at all.

An Orthodox Jew - particularly a haredi, or ultra-orthodox Jew - is required to follow the practices of his/her community and his/her community's religious leaders. S/he can't just pick and choose which rabbi to listen to or which interpretation to follow based on the situation. cherry-picking like that is specifically prohibited by Jewish law.

I am certain that in this situation the couple consulted with their rabbi already (ultra-orthodox Jews consult with their rabbis on just about everything, up to and including the color of the vaginal discharge on a woman's bedikah cloth.) Their rabbi told them what Jewish law required in their situation. For that couple, the rabbi's word is the law of G-d. They cannot simply choose to disregard it.

The couple were not "in denial." They were not clinging to their religion as an excuse not to do something hard. An Orthodox Jewish life is not an "easy" life. Orthodox Jews do not do the "easy" thing, they do what their religion requires. These people live EVERY ASPECT of their lives in accordance with strict rules they believe are dictated by G-d. Everything, from how they wash their hands to how they eat to how they dress to when they are allowed to have sex to how they sleep, is dictated by their religion. The smallest details have been discussed in depth by rabbis for centuries.

In this case, they believed G-d's law required them to keep their son on life support. So they did it. Period. If their rabbi had told them to take their son off life support they would have done it. Period.

The posters on this thread may disagree with having one's morality dictated by religion. But every one of us has just as subjective a standard for our personal morality. What's a better ground? philosophy? personal reflection? G-d forbid, the majority opinion? Religion may not be able to give us a clear-cut or always-applicable answer on when life ends, but neither can science! As the article discusses, there are even disagreements on what "brain death" means.

We already have mechanisms that we have developed to override a family's wishes and stop life support in extreme situations. For all we know, the family in this case would have been grateful for that intervention - stopping care they know is pointless but are religiously required to administer.

Let's keep in mind the fundamental question in this case - does the family have the right to impose their religious views on the hospital or not? If freedom of religion is to mean anything, the only possible answer is a resounding NO.

Scott: you are missing the essential point. the family is not imposing their religious ideas on the hospital. The hospital is ASKING the FAMILY about the FAMILY'S choices regarding care of a family member.

Whenever the care of a child is involved, the family makes the decision regarding that care. Families make these decisions based on their own morality. That morality is sometimes religious, sometimes not.

Following your logic, the hospital would be within its rights to disconnect life support if the family's decision were based on religion, but would NOT have the right to disconnect if the family's decision were based on other personal morality. That's discrimination AGAINST religion.

Eyelid,

You should read the actual story we're talking about here. That is not in fact the case. The hospital wanted to do one thing and the family was forcing it to do something else. It's very much exactly as I said.

And your strawman doesn't hold up. Pointing out that it is forbidden in this case by the First Amendment does NOT in any way imply that the situation would be different if religion were not involved. It would still be wrong for the family to force the hospital into keeping the machines on, but it would not in that case be a First Amendment issue.