Orac is the nom de blog of a humble pseudonymous surgeon/scientist with an ego just big enough to delude himself that someone, somewhere might actually give a rodent's posterior about his miscellaneous verbal meanderings, but just barely small enough to admit to himself that few will. (Continued 
This is getting depressing.
Yesterday, I did a brief post on the tragic story of a nine month old baby named Gloria Thomas whose father, a homeopath, put his faith in homeopathic medicines to treat her severe eczema and who as a consequence did not receive the necessary medical treatment she needed and died of massive sepsis, probably from a staph infection of her skin. It was clearly a case where faith in an irrational and unscientific system of medicine directly contributed to an unnecessary death by delaying necessary care.
But misguided faith in alternative medicine is not the only kind of misguided faith in the irrational that kills. Last night, I learned of a story that's at least as tragic as that of Gloria Thomas, if not more so:
A Jehovah's witness died shortly after giving birth to twins because her faith prevented her from having a blood transfusion.Emma Gough, 22, began haemorrhaging but because her beliefs did not allow her to receive blood she slipped into unconsciousness and died.
As she suffered severe blood loss and her life ebbed away, medical staff urged her husband, Anthony, and her parents, all of whom follow the same faith, to overrule her decision and allow a transfusion which could have saved her, but they refused.
This is about as tragic as it gets. Not only is a young woman dead based on an irrational belief, but her newborn twins are now motherless. Even more amazingly (to me), her husband and parents watched as this young woman whom they loved "circled the drain," as hospital slang goes. Not only did they just watch, but they supported her decision, in essence, to commit a form of suicide because she was afraid that doing what it took to save her life might damn her to hell and because she believed that her piety would make it likely she would end up in heaven. It's hard to think of anything other than fundamentalist religion that can make people behave that way. How could this have happened? Here's the rest of the story:
She gave birth naturally and all appeared well as she cuddled her baby son and daughter, but she suddenly began to haemorrhage. Her condition was complicated by the fact she was anaemic.Mrs Gough signed a form prior to giving birth making it clear she should not be given blood in the event of an emergency, which also confirmed she understood the risks of her decision.
Postpartum hemorrhage can be one of the scariest things in all of medicine. It's a true obstetrical emergency and one of the top causes of maternal mortality. Surprisingly, at least to people with no training in obstetrics, it is not a rare complication of childbirth, occurring after up to 4% of deliveries in the U.S. A young woman can appear perfectly fine after giving birth and then suddenly start pouring blood out of her vagina at a truly frightening rate--even for a surgeon. It can also be very deceptive sometimes, with blood loss being far greater than it appears. The most common cause is a condition called uterine atony. Normally, after giving birth, the uterus starts to contract on itself as it shrinks back to its normal size. This contraction pinches off the open ends of the blood vessels that had been connected to the placenta, stopping bleeding. Indeed, the reason uterine massage is sometimes performed is to stimulate the uterus to contract more quickly and to help it expel clots. When this contraction fails to occur, the bleeding can be truly impressive. Often uterine atony is associated with retained placenta, necessitating an emergency dilatation and curettage. Other causes of life-threatening postpartum bleeding can include birth trauma, coagulation disorders, uterine inversion, or uterine rupture. Not surprisingly, the risk of postpartum hemorrhage increases with multiple births, which distend the uterus more than singleton pregnancies. In uncommon cases, emergency hysterectomy may be required to save the woman's life.
As you might expect, treatment involves aggressive fluid resuscitation and a low threshold for transfusion, the use of drugs to stimulate uterine contraction, and sometimes surgery. When transfusion is refused, treatment options become more limited, and the threat to life much more serious. What's so tragic about this case is that Mrs. Gough would very likely have survived if she had just permitted her doctors to transfuse her. Hers was without a doubt an entirely preventable death. Worse, now that Mrs. Gough chose death, her family is trying to blame the hospital for the outcome:
But it is understood her family were unhappy with the hospital because they felt Mrs Gough should have been given a Caesarean section but was left to give birth naturally.Mr Gough, 24, a central heating engineer who has been left to bring up the children, said: "We are coping the best we can. There will be an inquest and issues will arise from that."
[...]
Peter Welch, who was the couple's best man, said: "Everyone is devastated by what has happened. We can't believe she died after childbirth in this day and age, with all the technology there is.
"What makes it even more sad is Emma had time to hold and start to bond with her twins before complications set in."
That is indeed incredibly sad, but, quite frankly, as much as I can sympathize with a family that's just suffered a sudden and tragic loss, Welch's statement is utterly outrageous and indefensible. A huge element of "all the technology" there that was available to help Ms. Gough was the technology of blood transfusions, which could have replaced her lost red blood cells and their oxygen-carrying capacity. Ms. Gough, her husband, and her family rejected one of the most critical parts of "all the technology" that could have helped her. With blood transfusion off the table, the rest of that technology had much less power to save her, and her doctors were hamstringed, although they clearly did the best that they could within the limitations that Mrs. Gough and her family imposed. Moreover, Cesarean sections tend to be associated with more blood loss (800-1,000 ml as opposed to 500 ml for a vaginal birth); so it's not surprising that, absent fetal distress in a young mother who's never given birth before who had stated quite clearly that she would not be transfused and in the face of preexisting anemia, obstetricians would tend to opt for a vaginal delivery. The only thing that I can think of that doctors might have done differently is to have performed an emergency hysterectomy as soon as they realized how bad the bleeding was (something that would only have been necessitated by Mrs. Gough's refusal to accept transfusion), but that's hindsight. Rare are the patients, particularly new mothers, who refuse a life-saving transfusion, and hysterectomy is quite rightly viewed as a last, rather than a first, resort.
I've been fortunate enough not to have to deal with very many Jehovah's Witnesses who have bled, and for the vast majority of the ones with whom I have dealt blood loss was not enough that their beliefs with respect to blood transfusions was ever a problem. One exception that I remember was a forty-something year old woman whom I took care of during my residency who was in a car wreck and had a femur fracture and multiple other injuries. She bled down to a hematocrit of 9 (hemoglobin around 3.0), which is around 1/4 or less of what it should be in a healthy woman. The orthopedic surgeons were unable to operate on her because of how tenuous she was; there was no room for her to lose any more blood, and this was before the existence of drugs like Epogen. Because she couldn't undergo surgery, her femur fracture was treated suboptimally with traction, rather than being definitively fixed in the operating room with a rod. As a consequence, she remained immobile in bed, at a much increased risk of developing pneumonia or a blood clot and a pulmonary embolism, and her hospital stay was extended enormously. She felt constantly light-headed and short of breath, suffering the massive headaches that extreme anemia can cause, and it took weeks of iron supplementation to get her hemotocrit up to a level where it was safe to operate.
It should be emphasized at this point that I strongly support freedom of religion and at least as strongly the right of a competent adult to choose her treatment and even to refuse medical treatment if that is her wish, as long as she fully understands the possible consequences up to and including death. I am not saying that the doctors should have found a way to force Mrs. Gough to accept a transfusion. Forcing treatments on competent adults who understand the consequences of their refusal of treatment is a violation of their right to self-determination. However it pains me to see the life of such a young woman, her whole life ahead of her with her two new babies, snuffed out for what is essentially no good reason over a dogmatic and tortured interpretation of passages from writings of prescientific people with animistic beliefs in which blood was imbued with the "life energy" of the creature who could not possibly have foreseen blood transfusions, much less prohibit them. Here's what I mean. In essence, the reason Jehovah's Witnesses believe blood transfusions are forbidden by God boils down to passages like Leviticus 17:11,12:
For the life of a creature is in the blood, and I have given it to you to make atonement for yourselves on the altar; it is the blood that makes atonement for one's life. Therefore I say to the Israelites, "None of you may eat blood, nor may an alien living among you eat blood."
You are to abstain from food sacrificed to idols, from blood, from the meat of strangled animals and from sexual immorality. You will do well to avoid these things. Farewell.
Jehovah's Witnesses take these passages and expand the term "eating" blood to mean that they must not take the blood into their body by any means--including transfusions. In this interpretation, a transfusion is the same as "eating" blood. Although I can sort of see the rationale, it is a ridiculous stretching of the text, nor is it a rationale that is accepted by any other major Christian sect. Moreover, there seems to be some--shall we say?--wiggle room in some areas but not others based on no good reason that I can determine. For instance, organ transplants are acceptable:
This belief does not prevent them from accepting organ donations. Although the practice is not encouraged, the Watch Tower Society, the movement's legal corporation, has ruled it is a matter for individual conscience. All organs and tissues, however, must be completely drained of blood before transplantation.
I guarantee you that, no matter how much the surgical team flushes an organ to be transplanted, there will be some red and white blood cells from the donor (some blood) remaining in the organ when it is transplanted. It's just not possible to flush every last red blood cell out of every capillary in the organ without risking damaging it. This means that Jehovah's Witnesses actually do allow the taking of an undefined but small amount of blood into the body; the question is: How much? A few million red cells? A few thousand? A few hundred? Is one red cell too much? What's the threshold? If it's OK to allow a little blood mixing during a transplant, why is it not OK to accept a blood transfusion so that two babies wouldn't have to grow up without a mother?
Of course, patients refuse treatment for all sorts of reasons, many rational, some irrational. Some believers in alternative medicine can cite reasons to refuse medical interventions that make Jehovah's Witnesses seem reasonable by comparison. However, fundamentalist religion is a particularly pernicious source of such irrational beliefs, because its beliefs are usually inculcated beginning shortly after birth, reinforced by the community (which in this case appears to have fully supported the mother's decision not to live), and given wide latitude by society, no matter how harmful or pernicious. If a person were to say that transfusion is forbidden because space aliens told him so, society would view that person as profoundly disturbed. But if the same person says that transfusion is evil because God told him so and a book written thousands of years ago by a prescientific society says so society respects that as a perfectly valid reason, and the only objection will be to question whether God really did command it or whether the passage in that ancient book really did say it. Then, of course, the faithful defend this belief:
Yearly, Jehovah's Witnesses spend millions of hours worldwide, selflessly going door to door to teach people of all nations, about the bible and the promises that lie ahead for obedient mankind. This young lady and her family have more faith than most folks who have posted... Under trial, they obeyed God's law! In her dying act, she left a witness to the world. Now, you have an opportunity to search for yourselves about God's laws concerning blood, not your own speculation of what it says but what it ACTUALLY says. She has the hope of a resurrection for her faithfulness! DO I?...... DO YOU?
Charity is a wonderful thing, but going door to door to preach a faith that can delude a young woman into depriving her children of her care is not a good thing. Such strong faith helped the Gough babies exactly...how?
It is interesting to note that many view Mrs. Gough's act as selfish, a charge that clearly bothers even her defenders:
He [a member of her congregation] denied Mrs Gough was being selfish by putting her own beliefs before the needs of her children, adding: "Children are always a priority. We respect life. We seek the best medical attention we can get but the requirement we have is that we do so without receiving blood. It is very sad and there is a lot of support for the family."However, Mrs. Gough and her family faced criticism from neighbours of Mr Gough's parents in the Sutton Hill area of Telford.
[...]
Another said: "I think it's disgusting. How could she make that decision not to have a transfusion and leave those babies without a mother? "It's terrible, I don't care what your beliefs are, to refuse treatment like that is awful."
That is the real tragedy of this story. Mrs. Gough's fundamentalist religious beliefs resulted in her being so afraid of what would happen to her mortal soul if she were to choose life by accepting a transfusion in contradiction to what she had been taught since she was a child that she was willing not just to throw her life away, but to leave her infants motherless and her husband without a wife. Undoubtedly, fear of "shunning," which is what Jehovah's Witnesses who choose to disobey the the church's prohibition are often subject to, also played a role. Meanwhile, her surviving family and friends try to blame the doctors for not doing a C-section, rather than placing blame where the blame should be placed: On teaching by their religion of a ridiculous interpretation of scripture beyond what could possibly have been meant and on Mrs. Gough's decision to follow that twisted interpretation unto death.
ADDENDUM: In this additional report, there's a nice explanation why the claim that a Cesarean section would have prevented the bleeding is a canard:
Dr Maggie Blott, a consultant obstetrician, said women pregnant with non-identical twins are at increased risk of needing a blood transfusion at birth. She added: "When women give birth, they bleed from the placental bed - the area of the uterus to which the placenta is attached."With twins there are two placental beds and so twice the bleeding."
She added that the risk applied regardless of whether the babies were delivered naturally or via Caesarean section. But births carried out by Caesarean increase blood loss - and therefore the need for a transfusion - because there is surgical blood loss on top of the normal bleeding from the placental bed.
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Comments
It strikes me that this amounts to child abuse. We know that children who's mother dies during delivery often suffer long term issues as a result, not only from lacking a mother when they most need her but also feelings of guilt about being the cause of the mother's death. Now when then happen after everything possible has been done to save the mother's life it is tragic but for it to happen because of the parent's religious beliefs makes me question if these people were fit to be parents.
Posted by: Matt Penfold | November 7, 2007 8:53 AM
And then they turn around and blame the doctors for not using "all that technology". . .
"Do whatever you have to do to save her, doctor!"
"Well, the best thing is a blood transfusion."
"Do whatever you have to do to save her, doctor, except that!"
"None of the other stuff will work if we can't get more blood into her."
"You horrible person! You didn't do enough to save her! We're going to sue!"
How about a religious exemption from lawsuits? You practice a religion that allows you to tell the doctor how to do his job, you're not allowed to sue the doctor for not doing his job.
Just letting her die because their Jehovah told them not to eat blood (BTW, are JWs vegetarian?) was bad enough. To then turn around and blame the doctors for her death is unconscionable.
Posted by: Alison | November 7, 2007 9:19 AM
Alison,
I rather suspect that should the family try to sue the hospital and doctor they would get short shift from the courts, to the extent it would probably get thrown out at the initial hearing.
Posted by: Matt Penfold | November 7, 2007 9:49 AM
I found this comment on the original story. What would happen to a MD who did this in America?:
As an anesthesiologist who has been presented with this situaion, I would call Security, remove family members and, usually the everpresent church elder, give blood and "..see you in court."
Pretty outragious position. I figure she can spend the rest of her natural life atoning for my sins. Probably require therapy forever - while she watches her child grow.
Posted by Tom
Posted by: factician | November 7, 2007 9:53 AM
Funny how the Jews (who are, so to speak, the original "owners" of this text) never noticed that it forbids transfusion, not just oral consumption.
Posted by: Eamon Knight | November 7, 2007 10:04 AM
The text from Leviticus is interpreted by observant Jews as a commandment to extract all blood from meat to be consumed (by kosher slaughtering and salting to draw out the blood). Nothing else. Pity some people feel the need to improve on the Jews' interpretation of their own text.
Posted by: amancay | November 7, 2007 10:20 AM
I know this is going to sound incredibly coldhearted of me, but I don't see this as a tragedy so much as an object lesson: Ignoring reality is almost invariably fatal. Death by misadventure is tragic; death by stupidity is simply stupid.
Posted by: Warren | November 7, 2007 10:21 AM
Warren,
I think I would agree with you if her children weren't also adversely affected by this. Growing up motherless is a rough price to pay for their mother's stupidity.
Posted by: factician | November 7, 2007 10:35 AM
My mom died, 6 mos. gone with my youngest sister, of a brain stem aneurysm at age 29. She had a headache and 3 hours later she was dead.
It was the defining moment of my life. Everything after was colored by it to a greater or lesser degree. Even 45 years later, I find myself unexpectedly confronted by her death.
For those people to deliberately inflict that on their children is mind-boggling.
Posted by: Bey | November 7, 2007 10:49 AM
I always wondered (abstractly at least) if a Jehovah's Witness would allow a transfusion from mother to child. That is that transfusion from the mother of the (hypothetically) pregnant woman to her child. It is arguable since the mother (er.. the mother's mother?) already shared blood during her pregnancy it could not be considered alien... a similar argument could be made for the father's (mother's father?) blood.
Posted by: SpotWeld | November 7, 2007 11:20 AM
re: "medical staff urged her husband, Anthony, and her parents, all of whom follow the same faith, to overrule her decision"
While I agree with you in principle (it is silly to die over irrational religious belief), it is also not the right of the family to permit treatment once she is unconscious. If one is given power of attorney, they are supposed to carry out the wishes of the patient, not their own wishes. If the patient had made her wishes known while conscious that she did not want the medical intervention, then when she became unconscious it would have been wrong for someone acting on her behalf to insert their own judgment.
As a 2nd year med student, we are taught to tell the proxy that they are not carrying out their own wishes, but their role is to affirm the wishes of the patient. In this case it seems the wishes of the patient were known and consistent and the proxy did the right thing. The guilt of death should never be placed on a proxy. The result of doing so would be medical intervention in cases where the patients did not desire it.
Posted by: ks | November 7, 2007 11:24 AM
My father was a Gilead Graduate (the JW seminary) in their first class in the early 1940's; he had been a member since the early 1920's due to the IBSA (International Bible Students Association)'s use of radio evangelism (and they never asked for money, how odd of them). My mother was also a Gilead Graduate, second class. Her mother became an IBSA member in 1897 when a door to door IBSA minister showed here that "burning hell" for evildoers isn't actually in the text of the bible (in fact hell AND death get thrown into "the lake of fire", a "second death" from which there is no returning).
Why all this is relevant is that until the early 1940's when two gentlemen named Nathan Knorr and Frederick Franz essentially staged a sectarian coup de etat, the IBSA did NOT forbid blood transfusions. It also allowed non-combatant military service, celebration of secular/religious holidays, and lots of other things that Knorr and Franz proceeded, on very thin grounds, to outlaw. In short, the JW of today is heir to a misguided changing of religious doctrine, enforced with cult-like power, brought about by two men almost singlehandedly.
My mother and father wished to marry, but were forced to leave the church over it even though the JW condemned catholic priests for the same behavior. Thus I was raised with the IBSA's beliefs rather than the JW ones.
The reason I am posting this comment is that I don't want anyone to think that the insane doctrines like refusing modern blood transfusions at a life-threatening crisis are based on anything either biblical or doctrinal. They are the cruel legacy of two twisted individuals. Pure IBSA doctrine is in fact essentially identical with modern mainstream christianity, even to the rejection of creationism (they felt evolution represented the way Elohim (who isn't God (ho Theos) because it can feel regret) performed creation.)
So when the JW come to your door, pity them not just for their insane doctrines, but for their entire lives being poisoned for nothing but the egos of two evil men.
Posted by: Nathan Wallace | November 7, 2007 11:29 AM
ks,
You do have a point about what a proxy can morally do once the person for whom they are acting becomes unable to make her wishes known anymore. However, there is no reason why the family couldn't have tried to persuade Mrs. Gough to see reason before she lapsed into unconsciousness--other than their religion.
Also, remember that the family is now trying to blame the doctors and the hospital for Mrs. Gough's death, in essence trying to dodge the blame for the consequences of her (and their) decision. It was probably that behavior that led me not to cut them any slack.
Posted by: Orac | November 7, 2007 11:32 AM
factician:
No argument that the kids' loss of their mother is awful; as Bey noted the decision is incomprehensible. That's why I knew I'd come off as too cold in my assessment. I can feel for the kids; they are literally innocent victims of this woman's (and her family's) stupidity. With any luck they'll be placed in a home that possesses sanity, but I doubt that'll be happening.
The whole story is sickening on a deep level.
Posted by: Warren | November 7, 2007 11:58 AM
Orac,
I agree with you on both counts - they were in the wrong prior to her unconsciousness and after her death. I guess I just wanted to point out that in between they were acting as moral proxies.
Posted by: ks | November 7, 2007 12:18 PM
"This means that Jehovah's Witnesses actually do allow the taking of an undefined but small amount of blood into the body; the question is: How much? A few million red cells? A few thousand? A few hundred? Is one red cell too much? What's the threshold? If it's OK to allow a little blood mixing during a transplant, why is it not OK to accept a blood transfusion so that two babies wouldn't have to grow up without a mother?"
From what I remember back when I was studying (I never was bapitized as a JW), it is the respect for blood that the issue as much as the blood per se. So, the question is not the number of cells, but rather did the durgical team make a good faith effort to remove as much blood as they could.
I've seen many discussion on the difficulties this doctrine created for JWs, and I think yours is one of th more thoughtful and better written.
Posted by: One Brow | November 7, 2007 12:22 PM
From what I have read, JWs always want family/fellow JWs in attendance at the medical care facility lest the patient commit heresy as a result of noticing s/he was bleeding out.
Posted by: khan | November 7, 2007 12:24 PM
I wonder if JWs would consider synthetic blood replacements as off-limits. They do, after all, seem to be getting closer to making this a reality in treating patients with massive blood loss or embolic events, and with such developments emerging, one wonders whether they'd be willing to wiggle that into their beliefs as well.
Posted by: Ben | November 7, 2007 1:08 PM
SpotWeld: It is my understanding, possibly erroneous, that JW will not even accept their own blood if it has been outside of their body, i.e. if it was stored ahead of scheduled surgery in case of hemorrhage. So the mother's blood would be off limits.
While we're on horrid things that can happen due to the JW doctrine, I remember a story one of my attendings told me during fellowship about a young woman he saw. The patient was an 18 or 19 year old woman with acute myeloblastic leukemia and a hematocrit of around 10. She and her family were all for aggressive treatment of the leukemia but refused transfusion, no matter what the circumstances. A judge, appealed to because of the extremity of the situation, declared the patient to be competent to make the decision.
Having no choice whatsoever (the leukemia would have killed her in days if nothing was done), the doctor treated her with chemotherapy and a wild attempt to use growth factors to improve her H/H. Naturally it didn't work (growth factors have to have decent stem cells to work with and aren't that quick anyway) and she slowly suffocated due to lack of oxygen carrying capacity in her blood. I would have been seriously tempted to commit assault in that situation, namely, assaulting the patient with a large bore needle attached to a few units of packed red blood cells. But I suppose that would have been unethical.
Posted by: Dianne | November 7, 2007 1:40 PM
Ben: My understanding is that JWs don't object to blood substitutes and that most human trials of substitutes are in fact conducted on JWs.
Posted by: ebohlman | November 7, 2007 1:43 PM
Aside from the aspect of dying for your faith, which is something I guess I accept but by which I am still saddened - I don't understand why the family seems to think a C-birth would have averted the bleeding. I thought that the risk of postpartum hemorrhage was higher after Cesarean because the uterus couldn't contract as effectively? Not to mention the potential for intraoperative bleeding?
I know that's a trivial point, except that the family seems to be implying that the overriding of the choice of a vaginal birth was partly responsible for the hemorrhage, which makes me wonder just how well they were informed in their informed consent. (Not that it's necessarily the providers' fault, but if things were already going pear-shaped in the communications between hospital staff and family, the family's understanding of the goings-on might have been somewhat impaired.)
Posted by: jen_m | November 7, 2007 1:48 PM
I wrote about this issue, too, based on some personal experience. This case is a horrible tragedy, for everyone involved. It's hard not to become disenchanted with all forms of religion; and with people who believe so strongly in things that other billions do not, and believe differently, just as strongly.
Posted by: Sid Schwab | November 7, 2007 3:01 PM
Good question on blood substitutes, I also wonder if they would object to storing their own blood for future transfusions. Not very practical for emergency use, but something to consider perhaps when planning a birth or other major surgery six or so months ahead. A very sad story altogether.
Posted by: Drekab | November 7, 2007 3:07 PM
What a depressing story. I would imagine everyone involved - esp the kids, but also the family and the medical team - will be carry lifelong mental scars.
As I understand it, Dianne is correct in that JWs do not accept their own blood "pre-banked" (e.g. for an elective surgery. Once it has been removed from their body they view it as no longer meaningfully "theirs" (part of them)... and thus covered by the same proscriptions as any other blood.
Some JW's may accept "blood recycling" during operations (blood lost being salvaged, put through a filter and re-transfused)- an issue can be precisely whether the blood actually "leaves" the body in going through the retrieval and cleaning system prior to re-infusion. The argument can get as nit-pickingly daft as whether the fluid circuit in the blood cleaning (filtering) machine is "continuous" (no gaps) - in which case you can argue the blood never totally "leaves" (breaks contact with) the body - or whether there is "discontinuity".
In the UK hospitals where Mrs Dr A worked (variously in internal medicine, anaesthesiology and ITU) there would be a big ring binder in the ER and in each OR anaesthetic room detailing all the different sub-sect varieties of JW (and other relevant religious) beliefs re transfusions and treatments.
As someone already brought up, Mrs Dr A comments that it is sometimes useful to shoo the other family and hangers on out of the room to find out what the patient really thinks about imminently dying for their beliefs. To be prepared to die and leave two small children motherless you must have, er, very strong faith... or, as I would probably put it, be completely crazy.
I can believe there might be psychiatrists out there, certainly in the UK, prepared to say that a mother who would choose to leave her small children motherless must per se be deluded enough to be incapable of making a rational decision. But without a court hearing it would be a tough call, and in the setting of this case there would be no time.
In my med school we have sometimes used the "JW transfusion issue" as an ethical teaching / ethical dilemma for the med students. It gets even more tricky when the patient in danger of bleeding out is a JW child of JW patients. And then consider if the child is brought in unconscious.
Posted by: Dr Aust | November 7, 2007 3:38 PM
Yes, this is a tragic situation. Yes, it is tragic for the children.
But free choice involves such risks, and depending on what beliefs one has, involves greater risks than others. And free choice is free choice, regardless of one's responsibilities and relationships.
One could (and probably will) argue that the young woman really didn't have free choice given her religion and her family situation, but we all have to deal with that, whether our moral standards are "rationally" (as though reason will only have one result for a moral dilemma)derived at, or a religion grown up with or adopted. We use what grey cells we are born with. Sometimes those cells lead an individual to do things most of us would call abhorrent. Such is life, and that's the way it is.
If reasonable people want to try and change people's minds, well, I think they are trying to do that--by challenging the sources of information, and the media, and education...what more can one do?
And if the husband tries to sue the hospital, I hope the hospital sues right back, and makes this an opportunity to educate people: c-sections are really undesirable for a whole host of reasons, and would not have prevented his wife's fatal condition (would have hastened it more, it seems), transfusion WAS the ideal technology to save his wife and they refused it, and they have dingleberries for brains if they think that somehow technology is going to work around the biology of the human body to somehow fit their religious (and quite unnatural) view of the world and how it should work.
I hope his parents get their grandchildren to raise.
Posted by: Rjaye | November 7, 2007 3:53 PM
My father-in-law is an elder in his Jehovah's Witness congregation. They most certainly do not allow for "banking" of your own blood for future transfusion. They will accept blood substitutions, however. They will also sometimes allow parts of blood to be used, but I don't have all the details on that.
Apparently the doctrine of "no blood" has softened, and it is now no longer an automatic excommunication from their church if a member does receive a transfusion. That said, because it isn't "official" doesn't make it any easier for a member to obtain one.
My wife is not a member of their church, but she has told me that if she is in the position where she requires a transfusion but not coherent enough to make the decision herself, that she would want me to deny the transfusion. As an atheist, it makes for a difficult decision. Do I follow through with her wishes and allow the love of my life to die, or do I follow my human conscience, have the transfusion peformed, and hope she'll forgive me after?
I hope I never have to find out what I'd do in that situation...
Posted by: sinned34 | November 7, 2007 3:54 PM
Actually, in the U.S., a child bleeding to death is an easier issue. If there's no time to get a court order, you save the life of the child, period. In nearly all states the court will back you up. The view is that adults are permitted to refuse treatment even if they die as a result, but they do not have the right to kill their children through such choices.
Posted by: Orac | November 7, 2007 4:01 PM
Truly hope you are never put in the position to need to make the choice, sinned34. I know what I think my own answer would be, at least if there were small children to consider.
It may be that the "softening" of some JWs on excommunication / shunning is in case JWs are transfused after (e.g.) being brought in to the ER unconscious so their JW-ness wasn't known. So it might not extend as far as "accepting life-saving treatment because you didn't want to leave your kids without a mother".
Was intrigued by what Nathan Wallace said above, as it shows how even things that are taken by people of faith as "ordained by God" are (at least to Godless types like me) shown by the historical record to be the result of human interpretation - often one interpretation among many competing ones.
Incidentally, an extended debate on JWs and blood products appeared in the British Medical Journal a few years back, and is online here.
Posted by: Dr Aust | November 7, 2007 4:13 PM
Faith means believing in something for which there is no evidence. It is a pattern of thinking that will always have serious negative consequences. Then it is no small step to blame these consequences on somebody else. It sure is hard to have the proper respect for people of faith our culture thinks they deserve.
Posted by: David Tyler | November 7, 2007 4:17 PM
Orac asks if I would die for my religion.
Answer: you only get one go at life and throwing it away for any god is logically and morally wrong.
Posted by: DLC | November 7, 2007 4:21 PM
One of the oft-overlooked issues in this type of story is the effect on the health care team. All of us who have seen someone bleed out and have felt helpless in the face of unstoppable hemorrhage know that it doesn't easily leave you.
The JW family did what was probably the ethically correct thing in honoring her wishes once she was unconscious, but they inflicted harm on the doctors and nurses who had to witness an otherwise healthy young woman die needlessly.
Posted by: PalMD | November 7, 2007 4:24 PM
We used to do the ethics discn mostly WRT a hypothetical adult patient, Orac - e.g. with the patient unconscious and relatives / friends of varying degrees of closeness being the person saying "the patient is a JW and doesn't want blood, don't transfuse them". I was always struck that it could come down to the treating doctor having to judge the likelihood that the relative/friend was "a reliable source" accurately reporting the unconscious patient's views.
BTW, did you mean just an unconscious child, Orac? What would be the view on an apparently articulate and comprehending child (say 12 yrs old) refusing life-saving treatment, but seeming to the doctors to be very heavily "influenced" by the parents? I guess this scenario is a bit artificial in this trauma setting, as w severe blood loss they would presumably not be able to reason to well even if conscious.
Posted by: Dr Aust | November 7, 2007 4:28 PM
The JW were always the one sect on this planet that as a teenager I would have been willing to wave a wand and arbitrarily exterminate - their hypocrisy on the value of life always sickened me and still does. That having been said, Nathan Wallace's information on how the "no blood" hypocrisy came about makes me think that a more suitable fate would be imprisonment in a re-education camp run by Christopher Hitchens.
And those two creatures that took it over... I trust that they are screaming in Hell right now?
Posted by: Justin Moretti | November 7, 2007 4:57 PM
I once defended a case that arose from somewhat similar facts. Uterine atony caused the JW mother to bleed down to a hgb of 4.2, but she continued to refuse transfusion. Her father (non-JW) persuaded a probate judge to convene a competency hearing in her hospital room; she was declared incompetent, the dad was appointed guardian, he authorized transfusion and she lived. However, she sued the doctors and hospital for following the order of the probate court and the directive of the guardian.
Posted by: DT35 | November 7, 2007 5:13 PM
I'm not all that familiar with Jehovah's Witnesses -- do they have a tradition of stories about members who looked like they were going to die from blood loss, refused transfusion, and then -- lo and behold, a miracle and they live after all? God sometimes does tangibly reward the obedient!
If so, the decision is perhaps a bit easier to understand. Like alties, magical thinking allows them to see themselves as the iconoclastic heroes and heroines who stand steadfast and are eventually shown to be right after all -- they will live. Though I'm not sure if promoting such irresponsible anecdotes would make the religion more, or less, culpable.
Posted by: Sastra | November 7, 2007 7:03 PM
The lesson from this story is an old one that we keep relearning: The patient has the right to refuse medical care, and performance of a medical procedure requires informed consent.
Not too long ago the standard of medical care was to bleed the patient to death. Under those circumstances, it made sense to refuse it.
Just prior to his death from a ruptured aortic aneurysm, Albert Einstein refused a medical procedure (repair) that would have saved his life. Einstein wasn't called stupid or idiotic for his decisoin, his decision was accepted and respected.
If a human being dies for a principle during wartime, he is called a patriot deserving of respect. If a human being dies for a principle that rejects a life saving medical procedure, is that not also worthy of the same respect?
Posted by: sqweakywheel | November 7, 2007 7:41 PM
This is a very interesting question, and I think it depends on the situation. I'd like to think that in such a situation, I would be able to think clearly enough to weigh the risk and the reward.
Risking your life to save someone else's is heroic by any measure. I'd like to think that were I in that situation, I'd do it. (Realistically, I'd most likely do it for one of my kids without thinking. For a stranger, I'm not so sure. It would probably depend on the circumstances.)
It can also be heroic if the link between the risk and the saving of someone else is more tenuous. People have risked their lives standing up to murderous tyrants, for example. You never intend to die in such a situation, but you may have to prepare yourself for the possibility. In doing so, your possible death is part of the struggle to end other senseless deaths. That's heroic, especially if it gets a result. Not that you'd ever know.
If someone held a gun to my head and told me to perform some atrocity or they'd kill me, I'd refuse. If they kill me, they kill me. At least my conscience is clean.
On the other hand, if someone held a gun to my head and told me to renounce a strong belief or they'd kill me, I'd do it and then silently chuckle to myself that I'd put one over on them, and console myself with the fact that I'm better than they are. (And I'd make no secret of this if I managed to escape.)
But if they only threatened to beat me up or imprison me... well, maybe the risk is worth the reward of standing up for your principles there.
Posted by: Pseudonym | November 7, 2007 7:52 PM
Orac wrote:
Sorry, but I can't agree. The death of Gloria Thomas was much more tragic. Emma Gough got to choose, Gloria did not.
sqweakywheel wrote:
Dying for a principle doesn't deserve automatic respect. It depends on the principle. Suicide bombers die for a principle. Should we grant them the same respect, even when their principle leads them to kill innocent children?
Posted by: qetzal | November 7, 2007 9:05 PM
Dying for a principle doesn't deserve automatic respect. It depends on the principle.Suicide bombers die for a principle. Should we grant them the same respect, even when their principle leads them to kill innocent children?
When it comes to suicide bombers, the side that sends the bomber out to blow up affords them considerble respect and even hard currency for the remaining family. The other side which is the target of the suicide (renamed homicide bomber) gives them about the same level of respect to the exploding person as is currently given to the unfortunate Jehovahs Witness in the above story. This seem a bit unfair since the Jehovah's witness wishes harm to no one.
Posted by: squeakywheel | November 7, 2007 9:42 PM
Squeak,
I agree with qetzal. Some principles are stupid. Also, bleeding was not evidence based. It was based on a medical concept no more advanced than chiropractic, homeopathy, acupuncture or the like. Fortunately, medical science progressed.
Posted by: Robster, FCD | November 7, 2007 9:43 PM
"Just prior to his death from a ruptured aortic aneurysm, Albert Einstein refused a medical procedure (repair) that would have saved his life. Einstein wasn't called stupid or idiotic for his decisoin, his decision was accepted and respected."
I might call it stupid, if I knew his reasoning. Would it be a complete recovery? Was the treatment painful? Would he have to keep undergoing preventative treatment? etc.
"If a human being dies for a principle during wartime, he is called a patriot deserving of respect. If a human being dies for a principle that rejects a life saving medical procedure, is that not also worthy of the same respect? "
It depends entirely on the principle. You'll notice that few Germans are regarded as war-heroes in other nations, despite being just as patriotic.
Same thing here, the reason this woman died was stupid and pointless, she should never have had to choose between her faith and her life, and the fact that she chose her faith simply saddens me.
Posted by: GDwarf | November 7, 2007 9:50 PM
The whole of Christianity is based on a willingness to die, to embrace death, for one's beliefs. So it's perfectly understandable and logical that someone who's a member of a Christian sect would follow through on that. Heck, the history of Christianity is replete with martyrs, and they're often greatly celebrated.
I can think of things I'd be willing to die for. A mythological sky guy isn't one of them.
Posted by: Bardiac | November 7, 2007 10:14 PM
I would argue that if she believed in an afterlife, she didn't really understand the consequences of her decision: one of those consequences was death, and she didn't understand or believe in death.
It's the refusal to believe in the reality of death that allows so many religious people to cheapen life and launch crusades, inquisitions, suicide bombings etc. Or refuse treatments that could save their life - because who cares about life? It's just the thing keeping you out of heaven.
Posted by: Chris | November 7, 2007 10:16 PM
I'm with GDwarf. There's not enough information to determine whether Einstein's decision was a stupid one or not, assuming the facts are even correct.
However, knowing what I know about the state of vascular surgery in 1955, when Einstein died, I can put things into perspective. The mortality from a ruptured AAA is very high, even today. 30-50% of patients who suffer one die before reaching the hospital, and of those who make it to surgery, between 50-70% don't survive. That's today, with all the surgical skill, excellent prosthetic aortic replacements, and advanced anaesthesia we now have. In the 1950s, a ruptured AAA had a mortality rate of very close to 100%. In fact, before 1951, there was no elective surgical treatment for a non-ruptured AAA, much less a ruptured AAA, mainly because there was no good prosthetic graft that could be used to replace the dilated or ruptured segment. When Einstein had his ruptured AAA, aortic surgery was new, anaesthesia was much more primitive, and consequently his chance of surviving an attempt at repair was incredibly slim.
Given that, his decision, if you are representing it correctly, was an entirely rational one.
Posted by: Orac | November 7, 2007 11:01 PM
Robster, FCD said "Fortunately, medical science progressed."
Which brings this question to Squeakywheel: Has homeopathy progressed? (sorry, another blog posting)
Oh, and a big difference between Einstein and the young woman who died of blood loss: Einstein was 76 years old, and actually died peacefully in his sleep from the untreated cardiovascular problem (which according to the comments above, would not have helped him much anyway).
The young mother was in her 20s and died from something that has been proven over and over and over again to be effective and safe.
Squeakywheel has been comparing apples with walnuts.
By the way, Squeaky... you are writing about cardiology and such, how come you have not answered my question here:
http://scienceblogs.com/insolence/2007/11/a_real_death_by_homeopathy.php#comment-629206 ... come on! I want to know the answer! Be the first homeopathy fan to give me one!
Posted by: HCN | November 7, 2007 11:40 PM
Jehovah's Witnesses elders will investigate and disfellowship any Jehovah Witness who takes a blood transfusion,to say the issue is a 'personal conscience matter' is subterfuge to keep the Watchtower out of lawsuits.
Many Jehovah's Witnesses men,women and children die every year worldwide due to blood transfusion ban.Rank & file Jehovah's Witness are indoctrinated to be scared to death of blood.
FYI
1) JW's DO USE many parts aka 'fractions' aka components of blood,so if it's 'sacred' to God why the hypocritical contradiction flip-flop?
2) They USE blood collections that are donated by Red cross and others but don't donate back,more hypocrisy.
3) The Watchtower promotes and praises bloodless elective surgeries,this is a great advancement indeed.BUT it's no good to me if I am bleeding to death from a car crash and lose half my blood volume and need EMERGENCY blood transfusion.
Know this,the reason that JW refuse blood is because of their spin on the 3000 year old Biblical old testament,modern medicine will eventually make blood donations and transfusions a thing of the past.When this technology happens it won't vindicate the Jehovah's Witnesses and all the deaths that have occured so far.
The Watchtower's rules against blood transfusions will eventually be abolished (very gradually to reduce wrongful death lawsuit liability) even now most of the blood 'components' are allowed.
In 20 years there will be artificial blood and the Red Cross will go on with other noble deeds.
None of these changes will absolve the Watchtower leaders or vindicate their twisted doctrines
Are there dangers from blood?There are over 500 aspirin deaths in USA yearly.
---
Danny Haszard born 1957 3rd generation Jehovah's Witness
Posted by: Danny Haszard | November 8, 2007 12:09 AM
Rjaye -
I think this is a good point. In cases where a patient knowingly refuses life-saving treatment (apart from where they have a near term terminal condition anyway), surely the doctors and nurses involved could sue the family/church for the distress involved?
After all, if it's possible for a JW to sue the people who saved his or her life, the reverse should certainly be possible.
Posted by: Andrew Dodds | November 8, 2007 3:39 AM
While obviously feeling for the family, is it not interesting that in each of these type of stories that the journalists and MD's can unequivocally state that the patient would have lived it they had taken blood. I wish there were more people like this on the earth that can tell me 100% for certainty that, if I do this or that, I will live or I will die. And that for a certainty that I will NOT get hepatitis, aids or any other number of blood borne disseisees known or unknown from blood. Plus, if I do get sick afterward, I am sure that they will take emotional and financial care to me and mine for the rest of my life for going along with them and their ideas of what is right and wrong. No thanks! Not for me and mine
Posted by: bob | November 8, 2007 9:18 AM
Don't listen to the lie's of poor old DannyH above. He has become mentally warped from abusing prescription drugs and now spends his time suing the companies that tried to help him! What a Hypocrite. Just google for yourself and see!
Posted by: reader | November 8, 2007 9:22 AM
Oh, really? Give me a break. Please cite an example of a media report where it was stated with "100% certainty" that Gough would have lived if she had accepted blood. You're dismantling a straw man, and a really obvious one at that.
What's said (and undeniably true) is that Gough very likely would have survived if she accepted transfusion. In other cases, what's usually said is that the patient's chances of survival without a transfusion is very low to nonexistent, while the patient's chances of survival with a transfusion are good, or at least much better than without the transfusion.
As for the risk of hepatitis, AIDs, etc., that risk is now very, very low--many orders of magnitude less than, for instance, Gough's risk of dying without a transfusion. Yours is a very dumb argument, I'm afraid. You'll have to do better than that.
Posted by: Orac | November 8, 2007 9:26 AM
One of my regrets about living here in BC, is that I can't get a good blood sausage. The weirdest thing about the JWs is that the end of the world was supposed to be 1919! When it didn't happen they just ignored that part of their religion. I do believe they still stick to their figure of 100,000 as the number who will make it to heaven!
Posted by: Scytale | November 8, 2007 9:31 AM
This seem a bit unfair since the Jehovah's witness wishes harm to no one.
There is a certain truth to this. As far as I know, JW rarely get jobs in blood banks and then refuse to release any blood products to those in need because it violates their religion. Which makes them one, maybe several, steps above some other religions one could name in which the practitioners deliberately withhold potentially life saving medications from others because taking said meds might violate their religion. They may do a little prostelyatizing, but they don't directly kill non-believers with their beliefs.
Posted by: Dianne | November 8, 2007 10:19 AM
Choose stupid.
Think of it as evolution in action.
Posted by: Marcus Ranum | November 8, 2007 10:23 AM
The family is blaming the hospital for the death because they don't want to deal with the fact that their loved one is dead because of an action - or rather, an inaction - to which they acceded. Which makes them human. And also, raging hypocrites. If you really, truly, honestly believe that blood transfusion is wrong, you must accept the consequences that come from that decision. If you believe that it's better to be dead than to "pollute" your body and soul with a blood transfusion, then you need to face such a death with acceptance, not with an attempt to shift the blame onto others.
If the family were saying, "The hospital respected our wishes. The ways of God are sometimes hard for us to understand, and we are grieving, but we know we made the right decision for our loved one," I'd still strongly disagree with their decision, but I'd at least have some respect for them. But people who refuse treatment and then whine that doctors weren't able to save lives regardless should be ashamed of themselves.
If their faith truly tells them to avoid blood transfusions, then the death of their loved one was in keeping with their faith. She died upholding the tenets of that faith. Essentially, she was a martyr. If they're as devout as they claim to be, they should be able to find enough comfort in that to avoid criticizing the medical professionals who did their damndest to avoid leaving two newborns motherless. Those medical professionals went against everything they believed in - everything they, yes, had faith in - in order to respect the competing beliefs of this young woman and her family. The fact that the family is ignoring this doesn't speak well of them.
Posted by: marion | November 8, 2007 10:28 AM
English common law in this area has recently been made much clearer by the Mental Capacity Act. The bit about the medical staff trying to get her family to override her (non)-consent form may be true (or may be journalistic invention) but in any case, the family has no legal standing whatsoever. Furthermore, the MCA provides th