Blood transfusion refusals – why new guidelines aren’t up to scratch

[Guest Kurt]

February 22, 2017 

Blood transfusions are a common and often lifesaving procedure. However, some groups, such as Jehovah’s Witnesses, forbid blood transfusions on religious grounds. Recently, the Royal College of Surgeons issued new guidelines on what to do when a person rejects a transfusion based on religious belief. However, these guidelines need further clarification to make it easier for surgeons to act fully in line with developments in English law when it comes to children.

In recent years, there has been a move away from paternalistic medicine, where the doctor always knows best, and a move towards “shared-decision making” – a process that is enshrined in English law. This means that the patient is informed of all the risks and, together with the doctor, they make an informed decision.

The issue of transfusion refusals is becoming increasingly important because the population of Jehovah’s Witnesses is growing, as well as people who refuse blood transfusions for reasons unrelated to religion. And the guidelines make a good attempt to give direction to surgeons who have to grapple with potentially life-threatening situations involving the refusal of blood transfusions using a patient-focused approach.

Clarity on adults

There is a very clear picture about how surgeons should manage adults who refuse such intervention, and there is further practical advice on how they should comply with legal, ethical and regulatory obligations. If these adults have capacity, then their wishes should be respected. If they do not have capacity, the surgeons must act in the patient’s best interests. In emergency situations, as well as surgeons acting in the patient’s best interests actions must also be in line with any advance decision by the patient – if a document is available detailing their wishes.

Adult refusals will be honoured if sufficient documentation exists – even in emergencies. Shutterstock

However, the guidelines are too clear cut in the way they depict the issue of refusals in the case of children. They don’t grapple sufficiently with the developments in the law that have happened since the Gillick case in 1982.

The Gillick case was brought by Victoria Gillick in 1982 in attempt to prevent doctors from giving contraceptive advice and treatment to children under 16-years-old, without informing or receiving consent from their parents. It was eventually dismissed and the judge said that if a child had enough maturity, understanding and intelligence regarding their medical treatment – known as a “standard for capacity” – then they could make decisions on this without parental consent.

While English law deals with the capacity of 16 to 17-year-old children under the Family Law Reform Act 1969, decisions about children under the age of 16 still rely heavily on the Gillick case and its subsequent developments.

However, the standard for determining capacity has changed since Gillick and it is now pitched at a higher level – which is more difficult for children to reach because it can include, in some instances, a requirement to demonstrate an ability to understand the implications of the consequences of refusing treatment. This can become an almost unattainable standard. Additionally, case law dealing with children has now shifted much of its focus from respecting the autonomy of children to adopting an increasingly more paternal approach.

Children – overruled

In all cases that have been to the English courts, children who have refused transfusions have been found to lack the capacity to make these decisions. Therefore, the courts have consistently overruled the decisions of children.

The guidelines state that overruling in the courts “has been the outcome of the majority of cases relating to the refusal of blood”. However, the guidelines should have avoided using the phrase “majority of cases”: no case in English law has upheld a child’s wish to refuse a blood transfusion because doing so has been seen, by the courts, to conflict with the child’s best interests.

Therefore, satisfying the requirements of Gillick in terms of understanding and intelligence is not enough for children under 16. There is a strong likelihood that the wishes of children possessing these characteristics will still be overruled. This means that the standard of capacity under Gillick is not the only yardstick by which the validity of the decision of the child is measured. It is worth noting that cases in English law have also explained that even if a 16 to 17-year-old child has the relevant capacity, his or her wishes may also be overruled by the courts.

Parents can overrule their child. Shutterstock

Refusing a blood transfusion is, of course, a very serious decision to make, and so the guidelines are right to urge surgeons to be mindful of their obligations to patients. However they are not completely up to scratch in terms of how they tease out some nuanced developments in the law that have the potential to impact on children. More needs to be done to determine what decisions could be made in the courts.

There are, indeed, flaws with the current approach in English law, but the guidelines must work within it and reflect the context of the law as it stands. The guidelines could, however, be more specific in the way in which they discuss the law, and particular focus could be given to legal developments post-Gillick in relation to children under 16.

THE CONVERSATION

 

[JW Insider]

On 3/4/2017 at 10:54 AM, Kurt said:

Blood transfusions are a common and often lifesaving procedure. . . .

While English law deals with the capacity of 16 to 17-year-old children under the Family Law Reform Act 1969, decisions about children under the age of 16 still rely heavily on the Gillick case and its subsequent developments.

However, the standard for determining capacity has changed since Gillick and it is now pitched at a higher level – which is more difficult for children to reach because it can include, in some instances, a requirement to demonstrate an ability to understand the implications of the consequences of refusing treatment. This can become an almost unattainable standard. Additionally, case law dealing with children has now shifted much of its focus from respecting the autonomy of children to adopting an increasingly more paternal approach.

From a medical point of view, I would submit that it is not just the children, but very few JW parents themselves could "demonstrate an ability to understand the implications of the consequences of refusing treatment." I would also posit that very few JW parents have even fully considered the Biblical point of view on blood transfusions for themselves either. We can surmise this from the fact that the vast majority of JWs accepted what the Watchtower said about rejecting all organ transplants as final, right up until the time the Watchtower changed its position on them. Immediately, the vast majority of JWs accepted the opposite position about accepting all organ transplants as final. Clearly, JWs had not considered the matter for themselves, and had not been using their own thinking abilities or even their own conscience in the matter.

If any have had any dealings at length with persons on the Hospital Liaison Committees (HLCs) in various congregations, then it is likely obvious to that JWs do not generally make up their own mind on the matter of blood, either. We merely submit to the "mind" of the Watchtower. JWs continually consult with the Society or HLC members about what blood-related therapies could be acceptable to their conscience and which ones are not allowed to be acceptable to their conscience.

(Romans 14:1-5) ¹ Welcome the man having weaknesses in his faith, but do not pass judgment on differing opinions. ² One man has faith to eat everything, but the man who is weak eats only vegetables. ³ Let the one eating not look down on the one not eating, and let the one not eating not judge the one eating, for God has welcomed him. ⁴ Who are you to judge the servant of another? To his own master he stands or falls. Indeed, he will be made to stand, for Jehovah can make him stand. ⁵ One man judges one day as above another; another judges one day the same as all others; let each one be fully convinced in his own mind.

There is a relatively new problem that medical professionals and medical authorities have been dealing with and this is finally being considered in the laws of the "superior authorities." (Romans 13:1-5)

(Romans 13:1-5) ¹ Let every person be in subjection to the superior authorities, for there is no authority except by God; the existing authorities stand placed in their relative positions by God. ² Therefore, whoever opposes the authority has taken a stand against the arrangement of God; those who have taken a stand against it will bring judgment against themselves. . . . ⁵ There is therefore compelling reason for you to be in subjection, not only on account of that wrath but also on account of your conscience.

The new problem is that there are now several Jehovah's Witnesses who have "surprised" the medical professionals and medical authorities by asking that they or their child be treated as an exception to the general rule for Jehovah's Witnesses. They will accept blood or otherwise "forbidden fractions" for themselves or children and make this a matter of conscience. These Witnesses make this decision in spite of the risk to their spirituality and/or the risk to their standing and acceptance in the congregation. This new problem has already been discussed in several respected medical journals. It's difficult to imagine the complication that this can cause for hospital professionals, even where the HLC has done its best to explain the Watch Tower's position. (The medical journals even discuss the legal implications of keeping the final decision of the parent or child from getting back to the HLC or other representative from the congregation.)

Even putting aside the Biblical aspect for the moment (i.e., consideration about prospects for eternal life), many JWs simply reject that there is ever a time when a blood transfusion offers the best chance of saving (i.e., extending) the life of the patient. There are supposed to always be alternatives, and even if not available, the risks of blood transfusion have been so magnified that many JWs often believe that the medical risk of accepting always overrides potentially life-saving medical benefits.

But the Society has admitted that blood transfusions (and other blood therapies that JWs do not accept) are often actually life-saving (from a medical viewpoint, not a spiritual viewpoint). 

To understand the complications, therefore, let's assume that there are times when the Society is right and the medical authorities are right, and that there really are times when a blood transfusion (or related therapy) is the best chance for saving the life of the patient. We are only considering those types of cases below.

Now consider the Law, for example and consider what should be the JW view toward the "superior authorities" in the following circumstances? How much effort should the HLC (or other consulted elders) put into convincing parents or child to conform to current "Watch Tower" policy in these situations?

What is listed below are 28 different situations with the following "variables:"

The person faced with the question is either:

• 6 or 16 years of age  (6/16) - the 6-year-old is only considered in these cases with JW parents.
• Baptized or Unbaptized (B/U)  - only applied to the 16 year old, where a 16 year old may be associating with Witnesses even though the parents are not JWs
• Parents are JW or not JW (PJW/NJW) - "mixed" marriage where only one spouse is JW is not included in any scenario.
• The child herself either wants to Accept, Reject or is Unconscious [and without directive] (A/R/U)
• The parent of the child either wants to agree with the child's decision or disagree (PA/PD) - note that if child is unconscious, then disagreement with a stated decision does not apply (although it is possible that a child carries a blood directive that JW parents reject at time of emergency)

In other words, as an example, case #1 means that the child is 16, unbaptized, parents are JW, but the child wants to accept a blood transfusion, and the JW parents agree that she can choose to accept it. Case #28 is a 6-year-old unbaptized child with JW parents, where the child wants to reject a transfusion, but the parents disagree, and want her to accept it in this case.

1. 16,U,PJW,A,PA 
2. 16,U,PJW,A,PD
3. 16,B,PJW,A,PA
4. 16,B,PJW,A,PD
5. 16,U,PJW,R,PA
6. 16,U,PJW,R,PD
7. 16,B,PJW,R,PA
8. 16,B,PJW,R,PD
9. 16,U,PJW,U,PA
10. 16,U,PJW,U,PD
11. 16,B,PJW,U,PA
12. 16,B,PJW,U,PD
13. 16,U,NJW,A,PA
14. 16,U,NJW,A,PD
15. 16,B,NJW,A,PA
16. 16,B,NJW,A,PD
17. 16,U,NJW,R,PA
18. 16,U,NJW,R,PD
19. 16,B,NJW,R,PA
20. 16,B,NJW,R,PD
21. 16,U,NJW,U,PA
22. 16,U,NJW,U,PD
23. 16,B,NJW,U,PA
24. 16,B,NJW,U,PD
25. 6,U,PJW,A,PA
26. 6,U,PJW,A,PD
27. 6,U,PJW,R,PA
28. 6,U,PJW,R,PD

The complication of a child having one JW parent and one non-JW parent, is not considered at all here, and might be further complicated by the acceptance of gender roles, where, for example, a husband who is a non-JW demands that he be accepted as the "scriptural" spiritual head of the family. Also, even where the parent and child are in agreement, they may still be at odds with either the medical professionals or the HLC. The "law" of the superior authorities can also become a concern, and may also be a concern that the JW parent (or child) will see differently than the HLC based on their conscience. All these scenarios might be a clue as to why the Apostle Paul rejected the kind of Pharisaism that would try to account for all the various scenarios and merely left "legal" matters up to each individual conscience.

[James Thomas Rook Jr.]

On 3/7/2017 at 6:50 AM, JW Insider said:

All these scenarios might be a clue as to why the Apostle Paul rejected the kind of Pharisaism that would try to account for all the various scenarios and merely left "legal" matters up to each individual conscience.

In the Shakespeare play, "Henry V"  the King was walking around at night, amidst the camped soldiers who had invaded France, to see what they were talking about around the campfires before another day of battle, slaughtering both French combatants and civilians.

These were battle hardened men ... veterans of many military campaigns .. who in this case were deeply concerned about the long wake of innocent bodies, and the rivers of innocent blood that they were creating to obey the political greed of King Henry. 

They had been taught from infancy that their sacred obligation was to obey the one that governed them, their King ... but their natural conscience was rebelling and they hated what they were obligated to do.

Paraphrased, "I hope we are doing what is righteous ... because if we are not .. because we are obligated to serve the King, he will have to answer to God for what we do here ...".

The Clergy had inculcated these soldiers that the King ruled by Divine Appointment .. that King Henry was God's "Faithful and Discrete Slave".

Those that do not know and understand History ... are doomed to repeat it. 

Especially so if they have "employment" where they can eat well, dress well, and sleep warm, and have the adoration of their minions.

... follow the money ... the trail ALWAYS leads to the TRUTH.

[Anna]

On 3/7/2017 at 6:50 AM, JW Insider said:

JWs continually consult with the Society or HLC members about what blood-related therapies could be acceptable to their conscience and which ones are not allowed to be acceptable to their conscience.

Hahaha, that is a kind of oxymoron as the conscience is a personal matter and what is acceptable to one persons conscience might not be acceptable to an other. I have a feeling the Society has recognized that this thinking (by the JWs who consult with them) is a bit flawed because it takes away personal research and personal conviction and the gift of free will. Like in the WT study article a couple of  weeks ago quoted a woman " Do not make me think; just tell me what to do. That is easier." 

I don't know if you or anyone else noticed a BIG change in the new Advance Directive. There are no longer any options for minor blood fractions that you can check. There is merely several lines of space under point 4 "Regarding other health care instructions" . So the holder of the directive is invited to put in his own words what other health care instructions he/she may wish to insert. When I filed it out,I did not consult with any elder as to what I should put there I merely broadly mentioned that "I may be willing to accept some minor blood fractions, but the details will have to be discussed with me...." Of course in order to be able to discuss any details, one has to inform oneself so that one knows what one is talking about, and that is the point I think. I mentioned this to the elders and they just looked at me. Then it crossed my mind that I wonder what they would have said if I asked them what I should write under point 4. I have a strong feeling they would have told me to go and do some research, and perhaps told me what publications to look up. I also have a feeling that this is also because of legal implications. No one can then say anyone was coerced into stating a particular wish. So really it is a good idea that portion 4 is left blank and it is up to the holder to inset his/her wishes. A definite improvement to get publishers to use their brain!

[Evacuated]

On 3/20/2017 at 8:57 PM, Anna said:

"I may be willing to accept some minor blood fractions, but the details will have to be discussed with me...."

Do you think a little more detail in writing would be prudent in case you are not conscious????

[Anna]

1 hour ago, Eoin Joyce said:

Do you think a little more detail in writing would be prudent in case you are not conscious????

Actually I did, hence the dots......I only put what I thought was relevant to the discussion, the other bit was...."or with my health care surrogate in case of my incapacity"

By the way you never got back with me on that discussion HERE

 

[Evacuated]

56 minutes ago, Anna said:

By the way you never got back with me on that discussion HERE

Oh yes I have!! 

[Evacuated]

On 4/17/2017 at 11:57 PM, Anna said:

By the way you never got back with me on that discussion HERE

Oh yes I have..... again!!