Emergent life saving procedures in minors against parental consent

[Benjamin87]

Recently ran into a couple of questions on practice board exams that highlighted the practice of going against parental wishes to deliver emergent, life-saving procedures (whole blood transfusions) to minors. Both questions centered around the parents having religious objections to their children receiving blood transfusions, but I'm sure this law/precedent is applicable to other situations.

My question: Why is this the case? Religion is cited in a number of other situations where parents refuse medical care which could prevent/reduce the risk of life-threatening/deadly diseases and it is respected (and abused...thinking anti-vaccinators mostly here). In fact, in these instances there is the additional argument of increasing the public health risk to others' children. Does this seem hypocritical to anyone else?

Honestly, I'm still thinking through the ethics/philosophy here. But the lines of where religion is and isn't allowed to dictate care seem to be inconsistent across the board.

Thanks. ✌️

---

Members don't see this ad.

 

[SurfingDoctor]

The child didn't choose the religious beliefs of their parents and therefore, shouldn't be subjugated to death because of it. There is no inconsistency when the end result is death.

Also no one actually respects antivaxxers, but the process of preventing a disease that could lead to death (vaccinations) is different medico-legally from the process of treating disease that will lead to death (exsanguination). Both are neglectful, but only one is universally terminal.

 

[Benjamin87]

The child didn't choose the religious beliefs of their parents and therefore, shouldn't be subjugated to death because of it. There is no inconsistency when the end result is death.

Also no one actually respects antivaxxers, but the process of preventing a disease that could lead to death (vaccinations) is different medico-legally from the process of treating disease that will lead to death (exsanguination). Both are neglectful, but only one is universally terminal.

Thanks for your reply.

I think what interests me and why I posted this thread, was more examining the situation from the eyes of the parents and/or child. If I was a devout parent and believed it went against god's will to deliver a transfusion (no matter what the consequences), I would be very upset with the healthcare system which disregards my beliefs to save my life (and damn my soul or whatever spiritual consequence results). Same goes if it were my child.

Respectfully, I don't understand your logic when you say "There is no inconsistency when the end result is death." If sometimes we are valuing the religious beliefs of parents and their implications on the care of their children (anti-vaccinators) and other times we are ignoring their religious beliefs (the emergent transfusion situation), there is indeed inconsistency. The stakes are just different, and I fully understand that point you were making.

I'm not religious. And I certainly see the tragedy of letting a child/adolescent die when a relatively safe procedure like a whole blood transfusion could save their life. I also have very little experience with life and death outcomes at this point in my medical education, and I know it would be very difficult to be the healthcare team caring for a child dying due to some religion. But from a purely philosophical standpoint, why do we have the right/imperative to deny a family their religious beliefs to save a child's life? If the answer is because we don't value their religious beliefs in the face of immediate death (and I think this is the answer), when are we just going to steamroll the religious exemptions for vaccines, or any other religiously-influenced paradigm?

 

[VA Hopeful Dr]

Thanks for your reply.

I think what interests me and why I posted this thread, was more examining the situation from the eyes of the parents and/or child. If I was a devout parent and believed it went against god's will to deliver a transfusion (no matter what the consequences), I would be very upset with the healthcare system which disregards my beliefs to save my life (and damn my soul or whatever spiritual consequence results). Same goes if it were my child.

Respectfully, I don't understand your logic when you say "There is no inconsistency when the end result is death." If sometimes we are valuing the religious beliefs of parents and their implications on the care of their children (anti-vaccinators) and other times we are ignoring their religious beliefs (the emergent transfusion situation), there is indeed inconsistency. The stakes are just different, and I fully understand that point you were making.

I'm not religious. And I certainly see the tragedy of letting a child/adolescent die when a relatively safe procedure like a whole blood transfusion could save their life. I also have very little experience with life and death outcomes at this point in my medical education, and I know it would be very difficult to be the healthcare team caring for a child dying due to some religion. But from a purely philosophical standpoint, why do we have the right/imperative to deny a family their religious beliefs to save a child's life? If the answer is because we don't value their religious beliefs in the face of immediate death (and I think this is the answer), when are we just going to steamroll the religious exemptions for vaccines, or any other religiously-influenced paradigm?

As an adult, you can refuse any type of care you want. Physicians will follow those wishes (we may try to persuade otherwise, but not much past that).

As a child, if you are in imminent danger of death we will override parents to deliver lifesaving care in 99% of cases.

 

[SurfingDoctor]

Thanks for your reply.

I think what interests me and why I posted this thread, was more examining the situation from the eyes of the parents and/or child. If I was a devout parent and believed it went against god's will to deliver a transfusion (no matter what the consequences), I would be very upset with the healthcare system which disregards my beliefs to save my life (and damn my soul or whatever spiritual consequence results). Same goes if it were my child.

Respectfully, I don't understand your logic when you say "There is no inconsistency when the end result is death." If sometimes we are valuing the religious beliefs of parents and their implications on the care of their children (anti-vaccinators) and other times we are ignoring their religious beliefs (the emergent transfusion situation), there is indeed inconsistency. The stakes are just different, and I fully understand that point you were making.

I'm not religious. And I certainly see the tragedy of letting a child/adolescent die when a relatively safe procedure like a whole blood transfusion could save their life. I also have very little experience with life and death outcomes at this point in my medical education, and I know it would be very difficult to be the healthcare team caring for a child dying due to some religion. But from a purely philosophical standpoint, why do we have the right/imperative to deny a family their religious beliefs to save a child's life? If the answer is because we don't value their religious beliefs in the face of immediate death (and I think this is the answer), when are we just going to steamroll the religious exemptions for vaccines, or any other religiously-influenced paradigm?

There isn't inconsistency. You are talking about prevention versus treatment. Those are separate things.

Again, I think the religious arguments of "anti-vaccination" are stupid and have nothing to do with religion. They have to do with parental and property rights, nothing more. I have had a lot of these discussions in my career. The religious arguments are universally about the parents well-being and their rights over their children as their property and almost never involve the benefit of the child.

But either way to your example, if you don't get a vaccine, fortunately there are enough others who do, that the child still gets a benefit secondarily despite parental inaction. If you don't transfuse blood or give chemotherapy or antibiotics, there is no secondary benefit.

And actually, there is quite a bit of leeway in the medico-legal for religious beliefs and parental rights for giving them the benefit of the doubt to do the right thing and not purposefully allow their children to die. Of course, it doesn't usually work out well for the child...

Faith-Healing Parents Jailed After Second Child’s Death

Two young children died after parents refused to treat them with medicine

time.com

 

[Benjamin87]

As an adult, you can refuse any type of care you want. Physicians will follow those wishes (we may try to persuade otherwise, but not much past that).

As a child, if you are in imminent danger of death we will override parents to deliver lifesaving care in 99% of cases.

Thanks for your reply, VA Hopeful Dr.

I understand the principle and practice of patient autonomy and how that can play out in the practice of medicine with certain patients. I also understand the requirement to intervene against parental wishes when a child's life is in imminent danger. I was just interested in discussing the foundational beliefs upon which these practices are grounded.

 

[Benjamin87]

There isn't inconsistency. You are talking about prevention versus treatment. Those are separate things.

Again, I think the religious arguments of "anti-vaccination" are stupid and have nothing to do with religion. They have to do with parental and property rights, nothing more. I have had a lot of these discussions in my career. The religious arguments are universally about the parents well-being and their rights over their children as their property and almost never involve the benefit of the child.

But either way to your example, if you don't get a vaccine, fortunately there are enough others who do, that the child still gets a benefit secondarily despite parental inaction. If you don't transfuse blood or give chemotherapy or antibiotics, there is no secondary benefit.

And actually, there is quite a bit of leeway in the medico-legal for religious beliefs and parental rights for giving them the benefit of the doubt to do the right thing and not purposefully allow their children to die. Of course, it doesn't usually work out well for the child...

Faith-Healing Parents Jailed After Second Child’s Death

Two young children died after parents refused to treat them with medicine

time.com

I think we can agree there is no consistency when looking at the issue from a medical perspective in terms of prevention (vaccines) and treatment (the transfusion example). But my point was from a religious rights perspective, there is inconsistency in when care is provided and when it is withheld, i.e. if we completely respected the religious beliefs in all circumstances, intervening to save a child's life against their parents' religious views would be illegal. Conversely, if we didn't respect the religious beliefs of parents at all, every child that is healthy enough to receive vaccines would receive them in spite of their parents' religious beliefs. We have a mix of these sentiments in this country.

I think starting to discuss where the legal basis of religious exemption and criminal neglect lies in medicine is getting off topic a bit. I was simply interested in discussing the pure ethics of the precedents. I'm sure we can agree that the ethics of an argument and the legality of an argument aren't always identical.

Anyway, I thank both of you for taking the time to respond to my thread. It has helped me think through some of the arguments on both sides of this issue.

 

[SurfingDoctor]

I think we can agree there is no consistency when looking at the issue from a medical perspective in terms of prevention (vaccines) and treatment (the transfusion example). But my point was from a religious rights perspective, there is inconsistency in when care is provided and when it is withheld, i.e. if we completely respected the religious beliefs in all circumstances, intervening to save a child's life against their parents' religious views would be illegal. Conversely, if we didn't respect the religious beliefs of parents at all, every child that is healthy enough to receive vaccines would receive them in spite of their parents' religious beliefs. We have a mix of these sentiments in this country.

I think starting to discuss where the legal basis of religious exemption and criminal neglect lies in medicine is getting off topic a bit. I was simply interested in discussing the pure ethics of the precedents. I'm sure we can agree that the ethics of an argument and the legality of an argument aren't always identical.

Anyway, I thank both of you for taking the time to respond to my thread. It has helped me think through some of the arguments on both sides of this issue.

.
I mean, I think if you are looking for black and white distinctions in philosophy and ethics, especially pertaining to parental rights and religious beliefs in how it applies to children, the lens of society is going be very cloudy.

 

[FutureInternist]

I still have an issue with Jehovah’s witnesses or Native Americans who are against blood transfusions and organ donation, but have NO issue getting a transplant.

If you are not willing to “pay into the system” then you shouldn’t get to reap its rewards.

 

[NotAProgDirector]

The conflict you see is because you're looking at this as a religious rights issue. It's actually a consent issue.

As an adult, you have the right to consent, or not, to any medical intervention. You might choose to not consent to a procedure on religious, ethical, moral, or any personal belief you have. As long as you are competent to make that decision -- i.e. you understand the consequences of your decision and can explain the risks and benefits -- then you are free to decline the procedure.

For children, it's more complicated. In general, we do not consider young children to have the ability to consent -- they can't consent to treatment, enter into legal contracts, etc. Therefore, we ask their parent to consent for them -- substituted judgment. We ask the parents to make the best decision for the child. Most of the time, this isn't a problem at all.

But when a parent has strong religious beliefs that put a child's life at risk, the situation becomes very murky. We don't know whether the child will hold these same beliefs after they mature and can make their own decisions. Same is true if the parent declines chemo for a treatable illness because they believe herbs will cure their child (having nothing to do with religion at all). In these cases, concern is raised that the parent is making the decision in their own best interest, not the child's. If it appears that the parent is making a decision far outside the norm, consideration of replacing that decisionmaker with another whom can represent the needs of the child is considered -- might be another family member, or a guardian.

This same process is used for adults whom are incompetent -- either because they are encephalopathic, psychotic, unconscious, or other. In those cases the problem is often the other way around -- it's clear that the patient would not want the procedure based upon prior communications / issues. But now that they are incompetent, someone else needs to make those decisions for them. They may choose against what the patient would want -- and those situations are often more difficult to navigate as a physician. I want to give the patient blood, and the person chosen to consent for the incompetent patient agrees, yet I know that this patient probably would refuse. Do I ask for another decisionmaker, or proceed with treatment?

Like all ethical issues, it's all shades of grey. Transfusions in patients who adhere to the JW religion can result in exclusion from the church for the patient, and potentially the family. In many of these insular religions, the church and community are tightly interconnected, and patients can find their entire lives upended. No easy decisions.

 

[Benjamin87]

I still have an issue with Jehovah’s witnesses or Native Americans who are against blood transfusions and organ donation, but have NO issue getting a transplant.

If you are not willing to “pay into the system” then you shouldn’t get to reap its rewards.

I think on principle, I agree with you. It's an interesting hypothetical to think through anyway. How much would the organ transplant system change if those considered eligible must be registered organ donors (to make the situation extreme).

However, I'm not too familiar with this system anyway outside of the basic discussions I've had in school so far. Picking the mind of one of those recipients you mentioned to see how they are justifying receiving something they themselves are against giving might be an interesting exercise...perhaps it just boils down to fear of death and self preservation.

Thank you for your response and thoughts.

 

[Benjamin87]

The conflict you see is because you're looking at this as a religious rights issue. It's actually a consent issue.

As an adult, you have the right to consent, or not, to any medical intervention. You might choose to not consent to a procedure on religious, ethical, moral, or any personal belief you have. As long as you are competent to make that decision -- i.e. you understand the consequences of your decision and can explain the risks and benefits -- then you are free to decline the procedure.

For children, it's more complicated. In general, we do not consider young children to have the ability to consent -- they can't consent to treatment, enter into legal contracts, etc. Therefore, we ask their parent to consent for them -- substituted judgment. We ask the parents to make the best decision for the child. Most of the time, this isn't a problem at all.

But when a parent has strong religious beliefs that put a child's life at risk, the situation becomes very murky. We don't know whether the child will hold these same beliefs after they mature and can make their own decisions. Same is true if the parent declines chemo for a treatable illness because they believe herbs will cure their child (having nothing to do with religion at all). In these cases, concern is raised that the parent is making the decision in their own best interest, not the child's. If it appears that the parent is making a decision far outside the norm, consideration of replacing that decisionmaker with another whom can represent the needs of the child is considered -- might be another family member, or a guardian.

This same process is used for adults whom are incompetent -- either because they are encephalopathic, psychotic, unconscious, or other. In those cases the problem is often the other way around -- it's clear that the patient would not want the procedure based upon prior communications / issues. But now that they are incompetent, someone else needs to make those decisions for them. They may choose against what the patient would want -- and those situations are often more difficult to navigate as a physician. I want to give the patient blood, and the person chosen to consent for the incompetent patient agrees, yet I know that this patient probably would refuse. Do I ask for another decisionmaker, or proceed with treatment?

Like all ethical issues, it's all shades of grey. Transfusions in patients who adhere to the JW religion can result in exclusion from the church for the patient, and potentially the family. In many of these insular religions, the church and community are tightly interconnected, and patients can find their entire lives upended. No easy decisions.

Thanks for your thoughtful and well communicated response. It's true that I was thinking of it from a religious rights perspective, primarily because of how troubling I find it to be in a situation where I am acting against well-intended wishes of a parent. I am inclined to think that most healthcare professions discard out of hand these beliefs because they don't believe in the same creed or because it simply doesn't jive with science in their quest to save a life. While it doesn't change the outcome, I hope I always appreciate a patient's beliefs with an ounce of humility and possibly even some guilt, even while I give that child the blood that will save their life. You alluded to similar sentiments in your reply, and I appreciate that.

I can say I do have a better understanding of why things are the way they are, and I do think it is the best way to do things for the vast majority of situations that arise. It, like all the other systems we humans have developed to do anything, isn't perfect, and as you said, "No easy decisions" exist in most medical ethics issues.

 

[j4pac]

I think that medical professionals should tread very carefully in these situations. If you’re going to perform an intervention that the parents disagree, you better hope that your intervention doesn’t do harm...as you will certainly get sued. I cannot envision a scenario where forcing chemotherapy against a parents will would be considered ethical. I could see the blood transfusion example (though transfusions aren’t completely benign).

 

[SurfingDoctor]

I think that medical professionals should tread very carefully in these situations. If you’re going to perform an intervention that the parents disagree, you better hope that your intervention doesn’t do harm...as you will certainly get sued. I cannot envision a scenario where forcing chemotherapy against a parents will would be considered ethical. I could see the blood transfusion example (though transfusions are completely benign).

This isn't a serious statement is it?

 

[j4pac]

This isn't a serious statement is it?

It was a typo. Are = aren’t. Thanks for being my editor. I’ll make the change. Nickel in your pocket!

 

[xffan624]

I think that medical professionals should tread very carefully in these situations. If you’re going to perform an intervention that the parents disagree, you better hope that your intervention doesn’t do harm...as you will certainly get sued. I cannot envision a scenario where forcing chemotherapy against a parents will would be considered ethical. I could see the blood transfusion example (though transfusions aren’t completely benign).

Chemotherapy in kids /= chemotherapy in adults. In most cases it's pretty successful and most childhood cancers are cured. For that reason refusal can and will be treated as parental neglect (except in occasional cases).

Parental Treatment Refusals: What Your Responsibilities Are When Mom and Dad Decline Cancer Treatment for a Child

ascopost.com

"Whatever the reason for refusal, the American Academy of Pediatrics advises that “clinicians have a legal and ethical responsibility to question and, if necessary, to contest” parental medical decisions that “put the patient at significant risk of serious harm.” Consistent with this recommendation, the largest study of its kind found that most oncologists reject parental refusals when treatment has a 33% or greater chance of success."

 

[j4pac]

Chemotherapy in kids /= chemotherapy in adults. In most cases it's pretty successful and most childhood cancers are cured. For that reason refusal can and will be treated as parental neglect (except in occasional cases).

Parental Treatment Refusals: What Your Responsibilities Are When Mom and Dad Decline Cancer Treatment for a Child

ascopost.com

"Whatever the reason for refusal, the American Academy of Pediatrics advises that “clinicians have a legal and ethical responsibility to question and, if necessary, to contest” parental medical decisions that “put the patient at significant risk of serious harm.” Consistent with this recommendation, the largest study of its kind found that most oncologists reject parental refusals when treatment has a 33% or greater chance of success."

Chemotherapy also almost universally has pretty bad side effects. I wouldn't consider it as neglect. I think that some jurors would think the same in a civil suit.

 

[xffan624]

Chemotherapy also almost universally has pretty bad side effects. I wouldn't consider it as neglect. I think that some jurors would think the same in a civil suit.

According to this review article, the court ordered treatment in 73% of the cases involving legal action. The article doesn't comment on civil action (if any) afterwards.

 

[emergentmd]

There is no consistency and people/government/docs try to create some structure to make them feel better that there is consistency. Its all an illusion and not just isolated to just this one topic.

Seems to be hyper-hypocritical to say its OK to do blood transfusions or chemo to save a child's life against the parent's wishes b/c the child can not consent and we as a country know better than parents. Then turn around and allow/advocate for late term abortions who we know are viable outside the mother's belly definitely against the child's wishes/father's wishes.

Laughable that at OB centers, we jump through all hoops drawing labs/do Fetal monitoring after 18 or 21 weeks on minor trauma b/c the fetus could be viable then allow abortions after 21 wks.

 

[j4pac]

According to this review article, the court ordered treatment in 73% of the cases involving legal action. The article doesn't comment on civil action (if any) afterwards.

Some of the cases absolutely are neglect. If the parents do not have rational reasons for withholding treatment and there are other concerns of neglect/abuse...absolutely, the courts should make the right decision. But I do think that we have to be careful about thinking that we care more about children than their parents. I've seen it blow up in Doctors faces before.

 

[SurfingDoctor]

I'm so glad this is turning into an abortion thread and in 20 posts no less.

Excellent.

 

[nikolaite]

It is interesting that no one here has mentioned EMTALA.

It’s a serious consideration in this context as failure to treat or stabilize an “emergency medical condition” and arrange appropriate transfer can get a physician and hospital in a lot of trouble with the Feds...meaning loss of Medicare reimbursement and crushing fines. It would appear to me that a parent could not block you from conducting your duty to the patient under this federal law, but I would highly suggest running it by your hospital legal dept to be sure.

 

[VA Hopeful Dr]

It is interesting that no one here has mentioned EMTALA.

It’s a serious consideration in this context as failure to treat or stabilize an “emergency medical condition” and arrange appropriate transfer can get a physician and hospital in a lot of trouble with the Feds...meaning loss of Medicare reimbursement and crushing fines. It would appear to me that a parent could not block you from conducting your duty to the patient under this federal law, but I would highly suggest running it by your hospital legal dept to be sure.

That's not what EMTALA does

 

[WheezyBaby]

I think that medical professionals should tread very carefully in these situations. If you’re going to perform an intervention that the parents disagree, you better hope that your intervention doesn’t do harm...as you will certainly get sued. I cannot envision a scenario where forcing chemotherapy against a parents will would be considered ethical. I could see the blood transfusion example (though transfusions aren’t completely benign).

Chemotherapy also almost universally has pretty bad side effects. I wouldn't consider it as neglect. I think that some jurors would think the same in a civil suit.

I am extremely palliative care-minded but sorry, pediatric low risk ALL has a cure percentage of 90+%. If you're refusing care for that related to treatment morbidities for an otherwise universally lethal disease, I would take parents to court all day erry day. The discussion is nuanced as to where to draw a line, but it isn't there

 

[nikolaite]

That's not what EMTALA does

I hear you for sure. I know once a person is admitted for stabilization or transferred, EMTALA no longer applies, but there is some disagreement on its application up to that point. It could very well be that a parent can refuse a whole blood transfusion in the case of their child’s EMC, and that a doc can merely record that treatment was refused and he’s covered. However, I’m not certain that is actually true. It is especially murky when you have a conscious 12+ yo that wants to try what the parent is refusing. Do you get legal involved to get a third party rep appointed? Or dismiss the pt from the ER?

 

[WheezyBaby]

I hear you for sure. I know once a person is admitted for stabilization or transferred, EMTALA no longer applies, but there is some disagreement on its application up to that point. It could very well be that a parent can refuse a whole blood transfusion in the case of their child’s EMC, and that a doc can merely record that treatment was refused and he’s covered. However, I’m not certain that is actually true. It is especially murky when you have a conscious 12+ yo that wants to try what the parent is refusing. Do you get legal involved to get a third party rep appointed? Or dismiss the pt from the ER?

EMTALA just isn't the critical aspect of the discussion, it's patient consent as NAPD elaborated on above. An adult can refuse emergency services for themselves and leave the ED if they are in a state of mind to do so in an informed manner. We do not acknowledge that children have the ability to make this decision for themselves. This is an aspect of all elements of pediatric care regardless of setting. Depending on the urgency of intervention, there may be no court or third party contact at the time of intervention, it may just be intervention implementation per physician needs assessment with hospital security intervening as necessary if parents attempt to physically interfere with care with plans to address the aftermath well... After

 

[nikolaite]

EMTALA just isn't the critical aspect of the discussion, it's patient consent as NAPD elaborated on above. An adult can refuse emergency services for themselves and leave the ED if they are in a state of mind to do so in an informed manner. We do not acknowledge that children have the ability to make this decision for themselves. This is an aspect of all elements of pediatric care regardless of setting. Depending on the urgency of intervention, there may be no court or third party contact at the time of intervention, it may just be intervention implementation per physician needs assessment with hospital security intervening as necessary if parents attempt to physically interfere with care with plans to address the aftermath well... After

Thanks for your response! And thanks to VA Hopeful Doc as well.