I'm curious of your opinion - page 2
On another board a group of people are discussing a case. It's about a 25 week premature baby needing a blood transfusion. The family refused the blood transfusion. The court's interceded and... Read More
Jan 2, '02When we get a pt whose parents refuse blood, regardless of gestational age, the philosophy is, you can refuse blood for yourself or another adult, but if it's a minor, esp an infant or young child who cannot speak for themselves, avoid blood if possible, but, if you can't, a court order is definitely gonna happen.
We start these kids on Epogen right away!! And they get Fe+ supplements. Everybodies' formula and breastmilk is fortified, too. On occassion, you can get away w/o transfusing them; if not the Epogen LOVES the iron it gets from the blood. All the kids are getting less transfusions, lately.
Jan 2, '02Yep! prmenrs - That's the law in most states now. Lots of recent legislature on this.
Check-out this Website:
http://www.childrenshealthcare.org/Last edit by fiestynurse on Jan 2, '02
Jan 2, '02Just a note from the L&D side:
20 weeks gestation marks the difference legally between a pathology lab slip and a death certificate. That is because a 20 weeker is not considered viable. However, I have held an 18 weeker while it lived for three hours, breathing feebly. Should we have intubated and done the whole works? The parents, nurses, and doctors did not think so. Did we do wrong for the child? Now you get into morals/ethics/spirituality etc.
Say you transfuse this child against the parents wishes. Say they are Jehovah's Witness and now believe their child will be damned to hell.
Also, you have saved a child who has a high potential for life long medical needs. Are you going to be around to fulfill those needs? No - we had this "wonderful miracle" over to the parents who must take this child home and care for it - sometimes on 24hr nursing care and ventilation support.
Sorry: I offer no solutions - just random thoughts on the subject. However, as an opinion, I do not believe we should take away the rights of informed parental consent. We live in the USA, not a Brave New World.
Do we mandate all aspects of health care until the child is 18 years old? Parents of children damaged by vaccines would oppose that thought. Do we not respect cultures and religions that are different from our own? The Laotians believe that some conditions are a divine gift, not to be taken away.
If we force treatment with known risks, against the parents wishes, do we then assume responsibility for bad outcomes?
Jan 2, '02Thanks, feisty--I love it that there are nurses who keep up w/stuff I don't! Very cool!
We are discussing 2 issues: 1. The ethics of extremely low birth weight, and very high risk infants, and 2. giving blood to infants/children whose parents' religious beliefs prohibit the taking of blood in any way shape or form.
#1 can be discussed til forever w/o resolution.
#2 has legal solutions, and, to ME, at least, is a non-issue, although it can be heatedly debated. And is.
I am NOT dismissing the religious argument, or any other that you have presented. But, if I am caring for a baby who needs a blood transfusion (I'm not talking about some far out, exotic, experimental proceedure, but one that is well-established in terms of risk-benefits, etc.) whose parents are JW, and there is no alternative BUT a blood transfusion to save his/her life, I'll call the Social Worker or CPS Hotline or whatever, and get a Court Order (actually the Neonatal Fellow or the Attending will do that part, I'll just make SURE it's done) and I'll give the blood.Last edit by prmenrs on Jan 2, '02
Jan 3, '02We had (and will have, sigh............) this discussion a few times already.
We called in the ethicscommission and after a few hours (the preemie got Ferro and all the other stuff already) decided to get a court order, because the parents recognized the law as being a "higher" something.
I've got difficulties with court orders and doing things against the will of parents, on the other hand, it is not ok for me to look on when children are getting worse and knowing we could do something about it.
I just don't know, it is so hard to take a side and do the right thing!!!!
Take care, Renee
Jan 12, '02I'm a bit late on this one but hope you won't mind, I'm new here and I've only just found the posting! I can't comment on the specifics of the case being discussed but would like to add a view.
The parents are not my patient. Screw what they think.
JW Parents care about their children, not just in their medical care but in their everlasting spiritual care (of course if you are not a believer then this is nonsense to you - but then just because YOU don't believe does that mean YOUR will should prevail?).
I guess anyone going through the trauma of serious illness in a child just needs someone with the view "screw you and your views - you're only the parent". Do not the parents have the God-given responsibility to care for their children? Do you really think that they want their child to die or come to serious harm? What they are asking for is for the best possible medical care, without recourse to blood. More and more members of the medical profession are confirming that non-blood is the "gold standard" of care.
In practice most paediatric and neonatal cases involving children of Jehovah's Witnesses are resolved without recourse to blood, even though, in many cases, the medical personnel were at first convinced that a court order would be required, (yes I do have personal experience of this). Of course this is not always possible and in most cases the law of the land will over-ride the parents wishes adding further to their trauma. Before blood is given by court order EVERY possible avenue should be explored to find an alternative treatment, including referral and contacting the local Hospital Liaison Committee for Jehovah's Witnesses, (with the agreement of, or at the suggestion of the parents of course) who might be able to help. This would be a "holistic" treatment, treating the whole family - with sympathy, care and consideration - something that most of you do (thank you ).
What happens in the Witness community when a child receives a blood transfusion against the wishes of the parents? The Witness community will rally around the family to care for them and help them over the trauma of the event - NEVER will they be ostracized for what has happened.
Jehovah's Witnesses act in accordance with their scripturally trained conscience - if your conscience says you cannot work with them they will respect you for kindly telling them and handing their care over to someone else.
Jan 12, '02For the other side of the picture. I AM aware and empathetic that giving the blood against the parents' wishes is VERY difficult for them. I am glad to learn that their Church community supprts them in what is w/o a doubt the toughest time of their lives as a couple and as parents.
Our social workers work w/all our parents, and when a court order is obtained and blood has to be given, the social workers are right there w/them, supporting them as much as possible.
I believe that neither myself nor any of the nurses I work with would reject the parents because of this religious belief. In fact, it makes us more vigilant about questioning the necessity of blood tests, asking the lab to run necessary blood work on a minimum of blood, starting Epogen and Iron supplements earlier than normal--in other words, attempting to avoid the use of blood unless there is NO ALTERNATIVE. I make sure the parents are aware of these efforts, and understand that we are not going out our way to compromise their beliefs--actually the opposite.
Many NICU nurses DO indeed know what it si like to have a child in the hospital; to be frightened of the outcome, even crying when that child has to have a painful proceedure.
I will continue to give blood to a baby who needs it, and nothing else will do; and I will continue NOT to judge parents who believe that it is wrong. I hope that I can support them adequately.
I am very glad you posted. What you said was eloquent and powerful. Thank you, again.
Jan 13, '02JW,
The view I expressed balances the scales of "do no harm" in the favor of the patient with disregard to the social standing of the parents within their peer group.
Are you suggesting that going against medical advice is "holistic"? Of course if I thought there was an alternative to blood that would give the best care to my patient then that outcome would be morally and ethicaly acceptable. The fact that it is acceptable to whatever religiouse doctrine no matter how unreasonable, is of no consequence to nursing theory if the patient is suffering needlessly
My personal beliefs are irrelevant and so are yours if their implementation does real and tangible harm. I believe harm could also be done if I disregarded a more efficaciouse alternative therapy because I thought you might not like it, or that it would violate your religiouse beliefs.
When doctrine becomes more relevant than the life it is supposed to enrich the meaning of, I have a problem believing God's will is involved. Regardless of this enigma, the doctrine of medicine is "do no harm" and that doctrine I intend to live by.
Jan 13, '02Going against medical advice can indeed be holistic - don't tell me you have never seen a conflict of medical advice, or medical advice being wrong - ignoring medical advice (or perhaps making a choice between opinions) has in many instances led to a satisfactory solution to a medical problem, without recourse to blood and the damage that that would have brought to the family involved. (I have several personal experiences, including a child with ITP, count varying between 20 and 10 - doing great now and family saved much trauma that a transfusion would have brought). Most times there ARE different ways of treating even the most serious of cases and it needs an open mind to be willing to explore them.
"Screw the parents" in my view represents a very unfortunate belief that your thinking is more important than the view of the ones who conceived the child. (I accept the possibility and hope in fact that your expression was just unwisely chosen in the understandable belief that only sympathetic medical personnel would view your posting).
"When doctrine becomes more relevant than the life it is supposed to enrich the meaning of, I have a problem believing God's will is involved"
I can understand your position, but that position is based only upon what YOU see as enriching life. For many people the enriching of life is based on many things, for some, things even more important that life itself at this time. (Don't get me wrong JW's do not want to die - like you they love life and actively seek medical treatment for themselves and their children, that's why they end up in your care). JW's believe that an everlasting future is possible and in that context life now, (although precious and to be cared for at all costs, excluding disobedience to Gods laws) is a "relative" thing.
No JW would expect you to fully understand how they feel - to those who do not understand Gods view of the sanctity of blood, their actions may doubtless seem foolish to some.
However, if you can understand a little of why JW's take the view of blood so seriously then you may, instead of the view "screw the parents", view them as people needing every sympathy and assistance that you can provide. In saying this I am not judging you, only the expressions you made, you may indeed be the most caring and helpful person when it comes to working with JW's. If not then I hope that this posting will at least make you think.
"Do no harm" is a very important doctrine to live by, the problem is we do not always know what constitutes harm to the person we are dealing with, sometimes it is good to let them tell us.
JW's and Blood Issues
Jan 13, '02JW Read with interest the studies of alternatives to giving transfusions as reported by the Watchtower the JW publication. And I do agree that in each instance these alternatives should be the first used. While every case was reported as successful I am interested in the cases which were not, surely there were some, and surely they could have been mentioned. Perhaps in the light of community support the family may receive during such a monumental decision.
I also have some question about the responsibility of the state in connection with a minor, when this responsibility overrides the parents wishes. I am assuming the states do have this right as the laws are clear with regard to 3rd trimester abortions and the right of the child life/health over the parent.
Can you comment please.
Jan 14, '02I am sorry for the delay in my reply I have twice formed a reply only to be told that I am not logged in (even though I am!) and then losing my posting after logging in again - frustrating!
The article I linked to was used to provide additional thought on the matter of "choice" and "conscience", I am sure that you realise that it was not intended to suggest that matters always turn out successfully.
Interestingly a number of years ago CBC ran a programme that tracked down families who had been in the headlines years before for "parents refusing blood - child will die" type stories. All of the children were shown to be alive and doing well but I wonder how many had their successful outcome similarly publicized? Child issue cases are very emotive and newsworthy.
Of course there are instances of deaths where blood is refused (generally adult of course, due to the law) but no one can say that blood would have prevented the death. There are many instances of death despite the use of blood, there are also many instances of death as a direct use of blood. Apart from any instances involving JW's one has only to look at the recent issues involving haemophiliacs in particularly Canada and France. The issues involving the risk of vCJD has been highlighted recently and has affected many hospitals, not only in their use of surgical instruments but also in the way that certain countries (USA for example) view blood donated from those who have been resident in the UK. Recent research has suggested that the use of albumin has in fact been responsible for possibly 100's of deaths and its use is seriously being evaluated etc etc!
Many medical professionals today openly advocate bloodless medicine, a video entitled "Transfusion Alternative Strategies" is available from Hospital Liaison Committees for Jehovah's Witnesses and carries interviews with such from around the world. An small extract from this video can be viewed at Video Extract (Realplayer Basic required).
As to the State, it is true that it acts in many cases to take over control of the child, however in that action it assumes responsibility, it is not its God-given responsibility. The God-given responsibility for care of children rests with the parents and they must answer to God for the way that they deal with that responsibility.
We would consider it right for the State to intervene in cases of child-abuse, but JW parents in seeking bloodless treatment for their children are not child-abusers and more and more courts are coming to realise this. In the UK many courts have refused to make a child a "ward of court" but have limited their response to a "specific issue order" outlining a single treatment if a "life-threatening situation" arises. In the USA similar legal methods have been adopted. Jehovah's Witnesses who are serious in their faith(*) will never consent to a transfusion of blood, RBC's, WBC's platelets or plasma but they may consent to the use of minor blood fractions, intra-operative cell salvage, dialysis, transplants etc, therefore these should be explored in each individual Witness case to see if they might be used effectively.
I hope this helps but I am happy to answer more questions publicly or privately if you wish.
(*) I have known individuals who are not JW's book into hospital saying that they are in order to avoid blood. I have also known ex-Witnesses continue to use their "Witness" title and of course there are those who are maybe associated with JW's but not themselves "dedicated" or committed to the faith. These may well at first present as "no blood" but subsequently relent.
Jan 14, '02JW,
Of course as I stated, when an "acceptable" alternative is possible the parents wishes can be considered. It's not a matter of faith. Faith is absolute.
There is no absolute here.
What if the case was an acute hemorraghic that was bleeding out. No cerebral consults over capuccinos. No time to run it through the courts and showcase your religiouse doctrine. No alternative therapies in statistical analysis to carefully ponder.
The patient, the child, that has made no statement of faith is dying there in front of you. The parents refuse consent.
Are'nt you directly responsible for the patients outcome? The parents have no medical training and therefore may not believe the child will die. You know if you don't hang blood the child will die and YOU will live with the regret. The synapse in the "malpractice lawsuit ending in a second career in foodservice" part of your brain fires rapidly.
Do you "screw the parents"?
JW, please don't consider this an attack on your religion, or an attack on you personaly. I realize I may come off as uncompassionate towards the parents but believe me, in the above scenario I would feel nothing but pity towards them.
What we THINK is inconsequential. What we DO carries all the consequences.