The Nuffield Council on Bioethics' "Working Party on Critical Care Decisions in Fetal and Neonatal Medicine" setting week-by-week guidelines for the treatment and resuscitation of newborns will be released today, November 16, 2006. In the meantime, based on news reports and last week's unethical statement by the Royal College of Obstetricians and Gynaecologists, the blogosphere is full of assumptions, judgements and even quite a bit of reasoned discussion about what is expected to be in the report. I'm not surprised that the comments are similar to the discussions about care for patients at the end of life, in content and divisiveness among prolife advocates.
Here is a "White Paper" summary of the report, published in The Scientist on November 15, and authored by the chair of the Council, Margaret Brazier.
The actual report evidently draws a line for "struggling" premies at 22 weeks gestation, saying that they should not be routinely resuscitated and taken to the Neonatal Intensive Care Unit (NICU), except when enrolled in experimental trials. The British Medical Association has already released a statement emphasizing that doctors should make clinical judgments on a case by case basis, rather than following arbitrary timelines. It's expected that the Report will suggest allowing babies who are not expected to live in spite of intervention to die a natural death. There is never a suggestion in the Report of the Working Party that babies' lives should be deliberately ended, although there is the recognition that some attempts to relieve pain may carry an unintentioned but known risk of speeding death. The report also concludes that there is no ethical difference between withholding and withdrawing treatment that will not preserve life.
Unfortunately, I don't think any US schools use the Hippocratic oath anymore. (Here's a concise article on the newer oaths that focus on relieving suffering rather than honoring the sanctity of life and which include promising to manage "finite resources." I can't count the number of times I hear "finite resources," which just means "taxes.")
However, the original Hippocratic oath says, "Heal when possible, but first do no harm."
We doctors can do so much harm using the tools we have at the medical centers where these babies are cared for. After all, most of the centers are research and teaching schools. We make strides by experimenting and the medical students and residents need to learn. But there must be a point at which we say, "This much and no more," without ever acting to intentionally cause death. In other words, it is acceptible to withdraw or withhold a ventilator or feeding tube, but it's never acceptible to smother the child or inject poison that's intended to cause immediate death.
If we are keeping the babies alive for the sake of proving we can keep them alive by our skills and technology, to avoid malpractice lawsuits or because the family can't let go, and we can see that the treatments are in fact only prolonging death for a child who can only feel pain and never process and understand that pain, we are wrong. We should not keep the child alive for our sakes, but only for his.
An interesting point in light of the RCOG's recommendation that there be more discussion about intentionally killing some children is made in this article in the UK Telegraph.
It seems that abortion is prohibited in most cases from the 24th week in the UK. For a couple of weeks, the babies who would be resuscitated under the guidelines of the Working Party could legally be aborted. The Telegraph editorial suggests that doctors should urge the Members of Parliament to reconsider their recent refusal to lower the limit on abortion on demand to 21 weeks.
Wednesday, November 15, 2006
Resuscitating and prolonging life
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14 comments:
I'll have to get back to this later, but do they address preemies younger than 22 weeks?
Sorry, but I completely disagree on a feeding tube. Everyone dies without food and water. A feeding tube is not heroic intervention. If you withhold food and fluids and the child dies of dehydration in 2 weeks, you've killed him just as certainly as if you brought a full-term infant home from the hospital and put him in a closet without water for two weeks. But that's called "child abuse" and would carry criminal penalties. Just because the baby is being left without food or water in a hospital bed and the decision not to give him food or water has been made by doctors does not make this any less child abuse and homicide. It just "medicalizes" and whitewashes what is being done.
grannygrump, the report pretty much assumes that all babies under 22 weeks will be given paliative - comfort only - care. The British Medical Association recommends that each child be evaluated on his or her own status - and I agree.
Lydia,
We are talking about babies that have a prognosis of less than 1% chance of survival past a few days. The feeding tube is an intervention that will "medicalize" their care and interfere with the suckling and is more often than not a barrier between the parents and the child. The baby becomes a patient who "belongs" to the medical professionals, not the new born baby of the parents.
My assumption is that the child will be given oral food. Sucking is such a comfort, a desperate need for the child - much more than the actual liquids for a day or so. Breast feeding mothers have very little fluid for the first 2 to 4 days - only the colostrum, an antibody-rich, thin liquid - until the milk "comes in." This is the way we are built and, evidently the way infants are designed to be fed. Even though she might be uncomfortable in a few days, I'd urge the mother to put the child to the breast as long as she can. (I'm a former La Leche League member, can you tell?)
In the very rare case where a child cannot suck at all because of his or her anatomy, or where the parents are just too uncomfortable with the idea of no fluids, I don't think a tube would be unethical. But, we're probably treating us.
An example was a tiny little girl I took care of (well, I helped the NICU nurses take care of) in residency. She had a brainstem, but no cortex to speak of, only one nostril which did not connect to the back of the throat, and she could only breathe through her mouth. If she sucked, she couldn't breathe. Believe it or not, she looked like a little pixie doll unless you took her cap off and saw that she had such a small head.
I'm afraid that, even though we knew that she couldn't live a week, the hospital process more or less took her away from her parents for the 3 days she lived. We put a feeding tube in her mouth, kept an oxygen mask placed next to and over her mouth, and kept her in the bright, loud NICU. Momma had "visiting hours," while I could sit and rock her all night, until I got paged! Momma was even discharged, over a hundred miles from home, before the baby died.
We should have given Momma and Daddy a private room, and sat with them and their baby until they wanted to be alone with her. If they wanted a feeding tube or oxygen, ok. As you say, this is low-tech stuff. But we shouldn't have made her our patient, and we should have helped them say good-bye to their daughter.
My understanding though is that in those cases the child is dying of the underlying condition and that there is no time for the child actually to die of dehydration. It's improbable for a person to die of dehydration itself in three days. The usual expected time is 10 days to 2 weeks, and I have read that children can take even longer (for some reason). But when we start saying that feeding tubes are optional, are treatment, and in some cases simply should not be given, this is not generally limited to cases where the child will die in three days or less than a week of some underlying condition. And I have never seen anyone who advocates this say, "If the child (or other person) is not expected to die of the underlying condition in less than the time it would take for him to die of dehydration, and if the person is not otherwise able to get fluids, the child _should_ receive a feeding tube, at least an NG tube, both for comfort and as part of basic care to avoid death by dehydration." In fact, statements of the sort I took you to be making in the original post usually are taken to be _contrary_ to this perspective and to involve acceptance of death by dehydration per se (over the standard 10 day to 2 week period) if no tube feeding is given. If the child's underlying condition permits living longer than it would take him to die of dehydration, and if he can't get necessary food and fluids any other way but by tube and hence _will_ die of dehydration without a tube, then I think in that case it's definitely not just "treating us" to give a tube. In fact, it would be unethical not to do so. One could observe and see if the child _did_ live past a few days and at that point decide that, if he wasn't getting enough from breast or bottle, a tube was really necessary. I can't tell whether you would agree or not.
Let's recall that dehydration deaths of the sort I'm describing are fairly widely accepted in the UK and also in the U.S., and references to "withholding tube feeding" as simply "letting die" are always interpreted in this medical and sociological context.
The cases you are describing come under the advice to judge each case on a case by case basis or the Council's term, "struggling."
So many of these babies can't handle stomach feedings and would actually require IV or parenteral feedings, with blood tests every 6 to 12 hours and the stress on their lungs, heart, liver and kidneys. Premies get necrotic bowel frequently. It looks like it hurts. (Of course, some of the babies don't like the oxygen tubes and masks, IV or feeding tubes, either. They're new to all this breathing air and touching - not to mention the gut contractions, which don't begin until birth.)
It would be just as wrong to demand that a feeding tube be placed in everyone who can't eat and drink enough to meet the "basic metabolic requirements." We'd end up drowning a lot of people with distended abdomens in that case. And, again, come between the baby and the parents.
Part of my thinking is colored from fighting for natural childbirth, bonding, and breastfeeding in the '70's. I know that this shouldn't be an issue with a sick child that we're rescuing. This conversation, however, is not about babies that can be rescued, with current technology.
(I'm going to be gone the rest of the day. Will be back tonight.)
If tube feeding is really going to drown someone with a distended abdomen, then perhaps a) his body isn't able to process food and fluids, in which case there's nothing to be done to hydrate him properly or b) as you suggest, the nutrition needs to be administered further along the digestive tract and/or by IV. If the former, we're just stuck, but then we're not neglecting feeding and hydration that *could be given.* If the latter, and if death by dehydration could be prevented by these means, then I think that's ethically required.
Having had two preemies (fairly late and healthy) and one near-preemie, I can say this: I'd certainly rather have my child nourished and hydrated by "artificial" means, even if this made the whole situation somewhat less "bonding" and cozy for me and the baby (and you can snuggle a baby with a feeding tube or an IV, of course, as I've done it) than have everything seem natural, natural, natural for ten days to two weeks while the child just withers away for lack of fluids that could have been provided!
What I have yet to hear here is either of the following:
1) An acknowledgement that language about the legitimacy of "withholding treatment" is widely used to justify outright dehydrating children to death when death by dehydration could fairly easily have been prevented by ANH
and/or
2) A clear condemnation of doing this.
Well, Lydia, frankly, I think you're arguing with the wrong person. What I have not seen is any reason to defend myself against such a charge. Take a look at the sidebar - there's a post just last week entitled "Intentional killing is not part of medical care." The purpose of this entire endeaver I call "LifeEthics" is to refute any such thing.
My Goodness! (to state my exasperation mildly)
I was trying to explain as carefully and clearly as I possibly could the reasoning behind the cases that would cause me to withhold artificial feedings. To explain why anyone - including the Nuffield Bioethics Council - would even have this conversation.
I've never had any experience or been known of the sorts of practices you want me to acknowledge. Withholding intervention with the intent to cause death is not the same as withholding because it's futile and is absolutely unethical. They are indeed absolutely wrong and probably not legal. If you know of any such practices - where there is not medical justification - then you should report them to the DA in that county.
Such unethical practices are not consistent with the doctors and nurses that I know.
I'm fairly astonished that you think dehydrating and/or starving people is so incredibly uncommon and easily punishable by law. Several of the names of adults to whom this has been done with full court approval, not to mention police supervision, have gone down in history and should be known to every pro-lifer and historian of the euthanasia movement--Tony Bland, Nancy Cruzan, Terri Schiavo, Marjorie Nighbert, just to name a few. I just read in Human Life Review the story of Dylan Walborn, four years old with cerebral palsy, legally starved to death over 24 days by his family. Here's just one link about him
http://www.dylanwalborn.com/
(He received small bits of water, which is why it took 24 days, but no food.)
Parents certainly have the legal right to refuse a feeding tube for their child, even if this would mean dehydrating the child to death. I know a family who were expressly given this option when their child was temporarily paralyzed and refused it. She would have died of dehydration but instead survived and improved.
When the Florida legislature was debating a bill that would have prohibited dehydrating people to death unless they'd expressly consented to it in a living will, one of the arguments brought _against_ the proposed bill (which did not pass) was that this would prevent parents' making this decision for their minor children, who could not have executed a valid living will.
Ever since Terri's death, awareness of the practice of terminal dehydration has swept the pro-life community. During her dying, we were told again and again that "this is done all the time" and that if her parents hadn't made such a fuss in the court she would have been quietly dehydrated to death years before.
Perhaps the doctors where you are don't offer parents this option, but if you think the district attorney would be interested if they did, you're much mistaken. It's considered a medical decision.
You and I agree that there are some patients who shouldn't have ANH because "his body isn't able to process food and fluids, in which case there's nothing to be done to hydrate him properly." These are the only cases I'm talking about, and the sort of problem that we find in the early premies.
You're bringing in a whole other group of patients, accusing me of complicity with something I've never advocated, and which is not advocated in the Nuffield Bioethics Council report.
Well, no, I'm not accusing you of anything, really, except perhaps a rather shocking innocence. I think that your phrase "withdrawing a feeding tube is acceptable" in the original post is very easily misunderstood as meaning that feeding tubes are just another form of treatment or "life support" and can therefore be withdrawn just as, and for the same reasons as, one might withdraw or withhold a ventilator. This is a very common view--that both are equally "life support" and that what was done to Terri Schiavo is no more wrong than a decision not to (say) receive kidney dialysis and be put on a ventilator.
What I'm nost inclined to conclude from our discussion (and still can't at all rule out) is that you are relatively unaware of terminal dehydration or that you think it highly rare and atypical. That would mean that you are, for some reason, not well-informed on that topic or discinclined to believe that so many people can do something so wrong, or something of that sort. Your references to contacting one's district attorney are amazing considering the full legality of what has been done in the cases I have cited and many others. Are you really under the impression that the law prevents terminal dehydration? If so you have not been paying attention to events in the last few years.
And why should you think that a bioethics think tank, when or if it refers (you don't actually say that it does refer) to "withdrawing a feeding tube" is _not_ talking about terminal dehydration? That's usually what _is_ meant by such language. Again, if you were fully informed as to the extent to which--_especially_ in the United Kingdom, but also in the U.S., with full approval of hospital ethics boards--this is accepted and acceptable, you would assume that they _are_ including terminal dehydration under that heading. I should say, in fact, that any bioethics think tank that advocates "withdrawing or withholding a feeding tube" probably _is_ complicitous in such practices and that you just don't realize this because of your own ethical commitments and your (surprising) assumption that nearly all other doctors and (of all things) ethics think tanks share those commitments.
The conditions under which nutrition and hydration can be withheld or withdrawn are clearly defined, both in the Nuffield article, and repeatedly in my comments. You are expanding the discussion beyond the limits of the paper. I've often condemned euthanasia myself and was discussing why this particular report did not encourage euthanasia.
The Catholic Bishops in the UK agree with the Council, also:
THE Roman Catholic Archbishop of Cardiff, the Most Revd Peter Smith, and the Bishop of Southwark, Dr Tom Butler, have jointly welcomed the Nuffield Council’s recommendation on saving newborn babies.
Speaking on Wednesday, they said of the report on the ethical issues surrounding foetal and neonatal medicine: “We warmly welcome its clear recommendation that the ‘active ending of life of newborn babies should not be allowed, no matter how serious their condition’.”
They went on: “Doctors do not have an overriding obligation to prolong life by all available means. Treatment for a dying patient should be ‘proportionate’ to the therapeutic effect to be expected, and should not be disproportionately painful, intrusive, risky, or costly.”
One of my missions is to educate and make sure that the laws protecting the helpless are followed. Here's the sort of teaching I've found on dehydration (at the end of life on the internet.
BTW, I looked up the references on the little boy, Dylan. You're right, if it went the way the newspaper article described, some one gave the parents very bad advice.
According to the doctrine of double effect and burden, the trouble in Dylan's death was that the tube was already here so it carried a low level of burden on the caretakers, and virtually none to Dylan. The time to death was going to be at least a few days, so the doctors knew that the parents would have to decide over and over to not use that tube.
I do believe that these cases are rare, that the fact that they are "news" supports my belief that they're rare, and that we must object and intervene to maintain laws that protect the helpless.
The conditions under which nutrition and hydration can be withheld or withdrawn are clearly defined, both in the Nuffield article, and repeatedly in my comments. You are expanding the discussion beyond the limits of the paper. I've often condemned euthanasia myself and was discussing why this particular report did not encourage euthanasia.
The Catholic Bishops in the UK agree with the Council, also:
THE Roman Catholic Archbishop of Cardiff, the Most Revd Peter Smith, and the Bishop of Southwark, Dr Tom Butler, have jointly welcomed the Nuffield Council’s recommendation on saving newborn babies.
Speaking on Wednesday, they said of the report on the ethical issues surrounding foetal and neonatal medicine: “We warmly welcome its clear recommendation that the ‘active ending of life of newborn babies should not be allowed, no matter how serious their condition’.”
They went on: “Doctors do not have an overriding obligation to prolong life by all available means. Treatment for a dying patient should be ‘proportionate’ to the therapeutic effect to be expected, and should not be disproportionately painful, intrusive, risky, or costly.”
One of my missions is to educate and make sure that the laws protecting the helpless are followed. Here's the sort of teaching I've found on dehydration (at the end of life on the internet.
BTW, I looked up the references on the little boy, Dylan. You're right, if it went the way the newspaper article described, some one gave the parents very bad advice.
According to the doctrine of double effect and burden, the trouble in Dylan's death was that the tube was already here so it carried a low level of burden on the caretakers, and virtually none to Dylan. The time to death was going to be at least a few days, so the doctors knew that the parents would have to decide over and over to not use that tube.
I do believe that these cases are rare, that the fact that they are "news" supports my belief that they're rare, and that we must object and intervene to maintain laws that protect the helpless.
Yes, the Nuffield report itself (wh. I’ve just had time to peruse in PDF) is far less open to misconstrual than your initial statement on the subject of feeding tubes in the main post here. They regard ANH as basic nursing care, not treatment, which is a very important positive and legally relevant point. And they have even, from what I can see, a fairly matter-of-fact recognition that many preemies will indeed require and should receive feeding tubes. This seems to me to be mere common sense, given the sleepiness of even many healthy, late preemies, though it may not seem to be keeping everything “natural” and may interfere with breastfeeding.
I am pleased that you regard what happened to Dylan as wrong. I’m afraid I would strongly disagree if your implication is that it would have been okay to leave him for 24 days to die slowly of starvation and dehydration had the feeding tube not already been in place. But you do not actually say so.
I cannot agree that cases of terminal dehydration, even for people who are not imminently dying, are rare, especially in a hospice context. Here I am relying not only on my own available anecdotal evidence but also on the evidence from such organizations as the Hospice Patients Alliance. There is also, for example, the near-death under these circumstances of Mae Magouirk, who was clearly not dying but merely recovering from surgery and who indeed recovered full consciousness and lived for several months the relatively normal life of a feeble, elderly, but alert woman in a nursing home after having been rescued from admission to hospice, where she had been put on high doses of Atavin, received only very small amounts of fluid, and became seriously dehydrated. This case was publicized through the disagreeing relatives who brokered her release just in time to normal hospital care for rehydration and who got Blogs for Terri to tell people via the Internet what was going on. The very ease with which a non-dying woman was put into “dying mode,” as it were, simply by being admitted to hospice by a granddaughter who thought her grandma “wanted to go to heaven,” speaks volumes, and it is by no means true that the publicization of such a case shows it to be rare. I could say more on this subject but will hold off.
I found the oncology article (which I've skimmed through) fascinating, especially as regards the implication (if I understood correctly) that delirium may be caused by dehydration and that this may be in itself an argument for hydrating cancer patients at the end of life. I understand that the article was also putting forward a new method of artificial hydration that would be more home-friendly.
I'm glad you read the report.
I've worked with hospice in south central Texas for nearly 20 years. I was shocked when I first heard accusations about intentional death by dehydration. I've been to lots of Continuing Medical Conferences on palliative care, hospice, and end of life and have never heard of the notion until the Schiavo case, when both artificial and natural intake was deemed "medical treatment." Greer proved that lawyers shouldn't be allowed to practice medicine. He should be charged with either malpractice or practicing medicine without a license.
In fact, the experts I've talked to seem to be concerned about treating the patient and about refuting the idea that their medical intervention is intended to kill, rather than to relieve suffering when the patient is dying of his or her disease.
We've got lots of common ground, here: We've agreed that there are times when feeding tubes may be withheld or withdrawn. We agree that acting with the intention to cause death is wrong. Our goal is to teach others that there's never a life not worth living. That's good!
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