250,000 Jehovah's Witnesses have died refusing blood

by nicolaou 739 Replies latest watchtower medical

• 

  Simon

  Telling someone they are intentionally ignoring a substantive issue for sake of a preferential view is an insult.

  Any questions about that? Do I need to underline it?

  I'm going off what you do, not what you say you do. You kept answering a question that I hadn't asked. I can only guess why you would prefer to address an issue I didn't raise over the one I actually asked.

  So, take it as an insult or whatever you want - just as I can take your refusal to answer the question however I want.

  Let me be clearer: are you saying that out of every 100, over 3 of them will die as a result of refusing blood? Do you think that number looks reasonable compared to other established figures.
• 

  LisaRose

  “What I am getting at is that the study was to determine the cost benefit of transfusions. If a patient took a transfusion lived, then died later of their condition, there would have been a cost benefit for the short term, and the patient would be glad to have extended their life by those months, but the transfusion would not alter the outcome of their disease in the long run.

  “So if a Jehovah's Witness refused the transfusion, and so died sooner rather than later of their underlying condition, can you really attribute that death to the Watchtower?”

  Marvin: Evinased on the above I’d say this is a non-factor. I’ll go back and check the article later.

  Why is it a non factor? If they are only counting mortality during the hospitalization, that is a huge difference. It seems to me that the transfusion would be more useful in keeping someone alive temporarily, due to low blood count, and less useful to keeping you alive long term. If you had severe anemia due to an accident, you would then go in to live a normal life span, but if you had cancer, and the cancer eventually caused your death, then taking or not taking a transfusion only prolonged your life, it did not save it. Explain how that is a non factor.
• 

  adamah

  Adam said- True, but you're simply pointing out yet another factor that is not accounted for, and only increases the uncertainty in any estimation; that point only undermines the ability to be able to safely say that ANY figure is accurate, much less to claim then that figure as being "conservative".

  TD said- I can accept that, but would clarify that this is a statistical uncertaninty in your assertion that, "In the U.S., we don't let 16 yr olds die..." I trust the irony is not lost here, if you've got a sense of humor.

  Well now you're forcing me to quibble over the word, "let", LOL!

  (Being that I'm usually accused of being overly-verbose, I try to take short-hands wherever possible; since you objected on it's grounds, let me explain).

  In the U.S., a minor has to FIGHT for the right to be declared a 'mature minor' who's given permission by a judge to make their own healthcare decisions. Obviously that is not the case for a 17 y.o. in NZ, who automatically enjoys the RIGHT to be able to make the same decisions without needing to prove anything to anyone.

  In that regard, yes, you are correct, the choice of the word "let" was poor, so saying it as, "In the U.S. we make 16 y.o. fight for the right to die" would be more accurate.

  PS statistical uncertainty pertains to Marvin's claim: he wants to claim it as "conservative estimation", so he'd need to assume the most-conservative possible, i.e. no JW under 18 was granted the right to die in the U.S.

  LisaRose said-

  Why is it a non factor? If they are only counting mortality during the hospitalization, that is a huge difference. It seems to me that the transfusion would be more useful in keeping someone alive temporarily, due to low blood count, and less useful to keeping you alive long term. If you had severe anemia due to an accident, you would then go in to live a normal life span, but if you had cancer, and the cancer eventually caused your death, then taking or not taking a transfusion only prolonged your life, it did not save it. Explain how that is a non factor.

  Interesting point, as remember that Beliaev's study specifically excluded palliative care pts, where the JW's who died earlier due to refusing BT might've even SAVED the healthcare system $$$, compared to non-JWs who accepted a BT, but at some greater expense. Of course, eliminating palliative pts also shifts the focus onto younger pts, since generally it's older individuals who go to hospice.

  However, that exclusion avoids any possible cost-savings incurred, and needless suffering prevented, from the practice of euthansia (which is what a JW who refuses BT is performing), where a terminal pt may decide they'd prefer to die sooner rather than later, simply to avoid the added expense and pain/suffering.

  Not that it's primarily a concern with Marvin's desired extrapolation, but it certainly shows that there's more to a question than simply meets the eye, and shows the power available to a medical researcher to design a study that demonstrates whatever they want it to show, simply by changing the exclusion criteria.

  Adam
• 

  Marvin Shilmer

  -

  “Let me be clearer: are you saying that out of every 100, over 3 of them will die as a result of refusing blood? Do you think that number looks reasonable compared to other established figures.”

  Simon,

  There are no "established figures" for how many JWs die the result of refusing blood.

  What you term “established figures” are deaths across a spectrum of causes within which is buried deaths attributable to refusal of blood. You can’t compare against these “established figures” when what you’re comparing against is within the same figures. You have to have a way of extracting the deaths in each case attributable to refusal of blood. This is something the data set from Beliaev offers some insight into.

  That 3 of 100 deaths is attributable to refusing blood transfusion among a group who refuses blood transfusion regardless of disease or condition considering that all 100 will suffer multiple diseases and/or conditions during their lifetime is no shock to my senses.

  Marvin Shilmer
• 

  LisaRose

  LisaRose said-

  Why is it a non factor? If they are only counting mortality during the hospitalization, that is a huge difference. It seems to me that the transfusion would be more useful in keeping someone alive temporarily, due to low blood count, and less useful to keeping you alive long term. If you had severe anemia due to an accident, you would then go in to live a normal life span, but if you had cancer, and the cancer eventually caused your death, then taking or not taking a transfusion only prolonged your life, it did not save it. Explain how that is a non factor.

  Interesting point, as remember that Beliaev's study specifically excluded palliative care pts, where the JW's who died earlier due to refusing BT might've even SAVED the healthcare system $$$, compared to non-JWs who accepted a BT, but at some greater expense. Of course, eliminating palliative pts also shifts the focus onto younger pts, since generally it's older individuals who go to hospice.

  However, that exclusion avoids any possible cost-savings incurred, and needless suffering prevented, from the practice ofeuthansia (which is what a JW who refuses BT is performing), where a terminal pt may decide they'd prefer to die sooner rather than later, simply to avoid the added expense and pain/suffering.

  Not that it's primarily a concern with Marvin's desired extrapolation, but it certainly shows that there's more to a question than simply meets the eye, and shows the power available to a medical researcher to design a study that demonstrates whatever they want it to show, simply by changing the exclusion criteria.

  Yes, I understand about palliative patients, I am not talking about them. I am talking about patients who have some condition that is still being treated. If you have cancer, they may be still be giving you chemo, still treating you, even if your outlook is grim, I wouldn't think that would be considered palliative care. The patients may extend their life a few more months through a transfusion, but they may then die due to the underlying condition. The study is only considering costs and mortality during the hospital stay. They are not at all looking at longer term mortality of even a few months. If you look longer term, you may see more of the non JWs who eventually succumb to their illness. This would completely change the statistics.

  If you are talking about accidents, then the numbers are probably pretty accurate. Get a transfusion and you will survive. Other non terminal patients could have better survival rates as well.
• 

  Marvin Shilmer

  Adamah,

  For varied reasons you and I hold different views on how much the teens in Beliaev’s study (assuming there were teens in the group) would influence the number I concluded. That aside for a moment, I’m not sure your direct comparison of legality has the effect you think because in service areas like the USA though the law is different I’m not so sure the outcome is different. Let me explain what I mean.

  Doctors in the USA have a duty to provide appropriate care for all patients.

  When an adult patient refuses appropriate care doctors are not allowed to overturn the decision unless the patient is incompetent or does not have a healthcare proxy completed when they were competent.

  When a doctor is confronted with refusal of treatment by a minor or parents/guardians of a minor a legal and ethical challenge arises over what is appropriate care for the patient when alternative treatment exists. Because there is much gray area in medical science as to what is appropriate care under most circumstances doctors in the USA have been compelled to apply alternative medical therapy though it’s not what they think is most appropriate. In effect, they are compelled by peers and this pressure is brought to bear through the conduit of Watchtower’s Hospital Liaison Committee groups.

  In comes practitioners like James Isbister and Aryeh Shander. These men have good credentials and training, and they are influential when called upon for consultation. Both these men (and many more like them with their own ideas of appropriate use of blood product) have made a pretty good living off the patient population of JWs. I’m not suggesting these men have somehow mistreated this patient population or otherwise behaved inappropriately. What I’m suggesting is that when these men speak up about success they’ve had treating JWs without blood it places pressure on local clinicians to approximate the same therapy in order to avoid complications such as legal costs.

  I don’t want to reveal his name, but I know a now-retired cardiologist who was among the very best in the world at treating pediatric heart patients. I was in the room with him several years ago with a JW child under discussion. He flatly refused a particular treatment option saying it was an unethical because there was a safer option that would fix the problem whereas the treatment at issue was only temporary and the safer option would eventually have to be performed. He explained in detail one risk in particular of the temporary fix. He said it would place undo stress on the child’s heart causing it to enlarge, which would place the child at increased risk of death. The local HLC member in the room had prearranged a phone conference with another world-class pediatric cardiologist. This consultant went on and on about how the procedure was completely acceptable and was well within standards risk acceptability. She plied lots of information on how many times she’s performed this procedure with success. The heart surgeon on my end was upset by this consult, but he eventually agreed to perform the temporary fix job. The child died 1-1/2 years later of an enlarged heart at a hospital more than 300 miles away from the cardiologist.

  This thing happened to a near infant. I’ve been in rooms on many occasions where the same thing was done, and more often than most people would expect, the physician lays down and does what he or she’s asked.

  That baby’s cause of death was not filed as “refused blood”. But that’s what caused that child to lose its life.

  This is how things have been structured and to this day we still have children dying as the result.

  Have you read the Watchtower organization’s May 22, 1994 journal issue of Awake? Take a look. You’ll see what I’m talking about.

  Marvin Shilmer
• 

  Giordano

  Additional information that would seem to be fairly conclusive. At least at first reading. Marvin some of this might help support your Blog information. All of the web sites contain the reports and there is a handy 'pubmed' at the bottom that you can click on to read full reports.

  GIO

  http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3496240/

  Blood Transfus. 2012 October; 10 (4) : 462–470. doi: 10.2450/2012.0105-11 PMCID: PMC3496240

  Refusal of blood transfusion by Jehovah’s Witness women: a survey of current management in obstetric and gynaecological practice in the UK:

  "Refusal of blood transfusion by Jehovah’s Witness (JW) women poses potential problems for obstetrics worldwide as haemorrhage remains a major cause of maternal morbidity and mortality. There is a general consensus that morbidity and mortality rates in association with childbirth and gynaecological interventions are higher in these women than in the general population.

  A core belief among members of the Jehovah’s Witness (JW) faith is that they will not accept blood transfusion or its primary components, including red and white blood cells, platelets and plasma, even when such transfusion could be life-saving 1 . This poses potential problems for obstetric services worldwide because obstetric haemorrhage remains a major cause of maternal mortality and morbidity 2 , 3 . Indeed, there is a general consensus that morbidity and mortality rates in association with childbirth are higher in these women than in the general population 4 – 7 . In the largest observational study in the USA, Singla et al. reported that JW women were at increased risk of maternal death and that blood loss was the major factor 4 . In the UK, the largest descriptive obstetric study of JW reported a 65-fold increased risk of maternal death compared to the national rate. In addition, there was significant haemorrhage (>1,000 mL) in 6% of all of Caesarean sections 5 .

  More recently, a study from the Netherlands reported that compared to the non-JW Dutch population, JW women had a 6-fold higher risk of all causes of maternal death, a 130-fold increased risk of maternal death because of major obstetric haemorrhage and a 3-fold higher risk of maternal morbidity because of obstetric haemorrhage 6 . Other earlier studies support these views, both for obstetric and gynaecological operations7.

  It is estimated that there are approximately 6 million JW worldwide, about 150,000 of whom reside in the UK. Thus JW women constitute a significant group at high surgical risk. Apart from menstrual blood loss and childbirth, the vulnerability of JW women as a group is further increased by the significant proportion of African women who are members, since these women have a high incidence of fibroid disease, and, therefore, a preponderance of menorrhagia and iron deficiency anaemia."

  http://www.ncbi.nlm.nih.gov/pubmed/11641673

  STUDY DESIGN: Mount Sinai Medical Center

  Obstetric outcomes were described for all of the women who were Jehovah's Witnesses and who delivered at Mount Sinai Medical Center during an 11-year period. The risk of maternal death was compared with our general obstetric population during this interval.

  RESULTS:

  A total of 332 women who were Jehovah's Witnesses had 391 deliveries. An obstetric hemorrhage was experienced in 6% of this population. There were 2 maternal deaths among the women who were Jehovah's Witnesses, for a rate of 512 maternal deaths per 100,000 live births versus 12 maternal deaths per 100,000 live births (risk ratio, 44; 95% CI, 9-211). Erythropoietin was associated with a non significant increase in hematocrit level.

  CONCLUSION:

  Women who are Jehovah's Witnesses are at a 44-fold increased risk of maternal death, which is due to obstetric hemorrhage. Patients should be counseled about this risk of death, and obstetric hemorrhage should be aggressively treated, including a rapid decision to proceed to hysterectomy when indicated.

  More recently, a study from the Netherlands reported that compared to the non-JW Dutch population, JW women had a 6-fold higher risk of all causes of maternal death, a 130-fold increased risk of maternal death because of major obstetric haemorrhage and a 3-fold higher risk of maternal morbidity because of obstetric haemorrhage 6 . Other earlier studies support these views, both for obstetric and gynaecological operations7.

  3. Zwart JJ, Richters JM, Ory F, et al. Severe maternal morbidity during
  pregnancy, delivery and puerperium in the Netherlands: a nationwide
  population-based study of 371,000 pregnancies. BJOG. 2008; 115 :842–50. [PubMed]

  4. Singla AK, Lapinski RH, Berkowitz RL, Saphier CJ. Are women who are Jehovah’s Witnesses at risk of maternal death? Am J Obstet Gynecol. 2001; 185 :893–5. [PubMed] 5. Massiah N, Athimulam S, Loo C, et al. Obstetric care of Jehovah’s Witnesses: a 14 year observational study. Arch Gynecol Obstet. 2007; 276 :39–43. [PubMed] 6. Van Wolfswinkel M, Zwart J, Schutte J, et al. Maternal mortality and serious maternal morbidity in Jehovah’s Witnesses in the Netherlands. BJOG. 2009; 116 :1103–10. [PubMed]

  7. Bonakder MI, Echous WW, Bacher BJ, et al. Major gynecologic & obstetric surgery in Jehovah’s Witnesses. Obstet Gynaecol. 1982; 60 :587–90.
• 

  Simon

  There are no "established figures" for how many JWs die the result of refusing blood.

  What you term “established figures” are deaths across a spectrum of causes within which is buried deaths attributable to refusal of blood. You can’t compare against these “established figures” when what you’re comparing against is within the same figures. You have to have a way of extracting the deaths in each case attributable to refusal of blood. This is something the data set from Beliaev offers some insight into.

  That 3 of 100 deaths is attributable to refusing blood transfusion among a group who refuses blood transfusion regardless of disease or condition considering that all 100 will suffer multiple diseases and/or conditions during their lifetime is no shock to my senses.

  The other causes of death are based on the figures for the general population with the same percentages applied to the JW population. If more JWs were dying because of refusing blood transfusions then those would be in addition to those values shown which would be larger to encompass them. I don't think your point is at all relevant as it wouldn't materially change things.

  Personally, I think a claim that at least 3 out of every 100 JW deaths would be due to refusing blood is laughable. I doubt 3 out of every 100 even have "refusing blood" come up as an issue. How many people simply die of old age? Not every death is a dramatic event.

  If we go off your other claim where you said there would "easily be over 250,000" then that means it would be over 15% of JWs - more than 15 for every 100, that you think will die because of refusing blood.

  That seems far-fetched to the extreme. Certainly not "conservative" by any conventional use of the word.
• 

  TD

  Well now you're forcing me to quibble over the word, "let", LOL!

  There is no quibble here. The meaning was implicit in the assumption that a mature minor in Beliaev's study would have lived, had they resided in a country like the U.S. instead of NZ and the mathematical implications of that assumption.

  But I do understand the point you were making.
• 

  Simon

  Interesting article Giordano.

  Some things that I noted from an initial glance through:

  the vulnerability of JW women as a group is further increased by the significant proportion of African women who are members, since these women have a high incidence of fibroid disease, and, therefore, a preponderance of menorrhagia and iron deficiency anaemia.

  I didn't actually know this about the UK (it likely differs by region - possibly London is very different to elsewhere in the UK). It could also point to other socio-economic factors playing a role in other studies. Again, so many variables ...

  This survey shows that a small but substantial proportion of consultants do not have protocols for the management of JW women, operate on JW women with a relatively low Hb concentration which could lead to rapid development of acute anaemia in the event of significant blood loss and do not adopt a multi-disciplinary approach. Whether all these contribute to the reported poor outcomes in this vulnerable group of women is a matter for conjecture, but it seems logical to suppose that changing practices could translate into improvement of outcomes.

  Again, it points to having large differences in outcomes based on the different hospital or surgeon you happen to have. Another reason why it's difficult to extrapolate things out.

  In fact, they say this very thing:

  We further acknowledge that a significant limitation of the study was the low response rate of 28%, which might question the validity of the findings if the population of responders is not representative.

  Still, it's nice to see there are more studies available - they can certainly be used to construct a more comprehensive model.