Religion and refusing medical treatment: Would you die for your religion?

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.”

Or Acts 15:29-30:

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.