A couple of weeks ago or so someone on Facebook recommended two articles on the subject of denying artificial nutrition and hydration. (He being on the other side of this issue.) I've been waiting ever since then, after reading the articles, to finish up a bunch of other projects so that I could devote some time to discussing them.
I'm sorry to have to say that these two articles come from an evangelical Christian bio-ethics think-tank, the Center for Bioethics and Human Dignity.
The first piece, by Scott Rae, has the hopeful title "How Much Brain Do I Need to be Human" and is occupied for much of its space with a welcome denial of the central tenet of personhood theory--that severely mentally disabled people are not persons at all. To his credit, Rae expressly rejects the horrifying views of other ostensibly evangelical writers he cites, Robert Wennberg and Robert V. Rakestraw, who argue that a person in a PVS has lost the image of God or that the "person" is dead even if the body is alive. Rae's rejection of these disgusting views is appropriate and, if I may put it this way, disarming. I say “disarming,” because in the midst of affirming the full personhood and even the right to life (!) of people diagnosed as in a PVS and of anencephalic infants and people in the late stages of Alzheimer's, Rae suddenly begins declaring, without conspicuous argument, the legitimacy of withholding nutrition and hydration from such people.
Rae’s only attempt at argument (if it is intended as an argument) is a blanket appeal to authority:
There is a growing consensus, reflected in the Cruzan decision, that medically provided nutrition and hydration are indeed forms of treatment that can be refused, if there is clear evidence that it is the patient’s wish.
Of course, since infants are one of the groups of people in question, the tip of the hat to the doctrine of consent seems like a fifth wheel, especially since at no time in the article does Rae say that it is illegitimate to withhold nutrition and hydration from someone if there is not "clear evidence that it is the patient's wish."
On the contrary--he has some pretty negative implications to make about those who wish to administer ANH to the severely neurologically compromised. And most unfortunately, those negative implications come in the form of a jolting introduction of theology into the discussion.
In most cases feeding tubes are analogous to ventilator support; removal of feeding tubes is not starving a person any more than removing ventilator support is suffocating them. Further, to insist on a mandatory aggressive treatment based on the sanctity of life doctrine is to elevate earthly life to the status of the ultimate good. If the sanctity of life obligates us to do everything at all times to keep people alive, then we are making a dangerous theological assumption about earthly life being the highest good. From a Christian view of the world, earthly life is a penultimate good; the ultimate good being our eternal fellowship with God. Moreover, with death being a conquered enemy, one thing that follows is that death need not always be resisted. It is acceptable to say “enough,” including the removal of feeding tubes.
The first sentence is the barest assertion. The fact that we do not usually have to give people, even helpless and sick people, air at all (air being all around us and being drawn in by the basic, automatic functioning of the body), but that helpless or weak people frequently have to be fed (infants with breast, bottle, or spoon, weakened or very elderly people with spoons, feeding tubes, etc.) even when their basic bodily functions are operating quite well, is not considered at all as a possible counter to the analogy. Rae does not even touch on the ordinary vs. extraordinary care distinction.
But the theological material is worse than just weak on argument. It is actually rather offensive. If giving food and fluids is simply care, ordinary nursing care, rather than "aggressive treatment," as Rae implausibly calls it, what the deuce does all this business about how earthly life is not the ultimate good have to do with anything? If a mother were to leave her newborn infant without a bottle until he died, no jury in the world would take it as a defense that the mother, as a Christian, considered the child's "eternal fellowship with God" to be the ultimate good and considered death to be a "conquered enemy." In fact, such a defense would quite rightly be an embarrassment to Christians. Neglecting a helpless person until he dies cannot be defended on the grounds that earthly life is not the ultimate good. Hence, Rae cannot evade in this way the question of whether leaving a helpless person to dehydrate to death constitutes neglect. This sudden argument from eternity is a fairly transparent attempt to dodge the question of the ordinariness of food and fluids, a vault into theological language in an attempt, in lieu of an argument, to make a theological accusation against people like the Schindlers. What's the matter with you guys? Why do you want Terri to keep receiving food and water through a tube? Don't you get it that death is a conquered enemy? Don't you understand that earthly life is not the ultimate good? This is rather disturbing stuff, and certainly not impressive from an argumentative point of view.
Well, okay, but one piece can't do everything, and in the last few paragraphs Rae returns to his laudable task of affirming the full humanity and personhood of disabled people. (Though even there, and oddly, he says that we need not do everything to treat persons and adds "especially those in a PVS." Why "especially"?) But perhaps the other one, by John T. Dunlop, will make the argument for denial of food and fluids better or more clearly.
Not really. Dunlop certainly addresses a much wider range of cases than does Rae and at least brings up the ordinary vs. extraordinary distinction, but only to drop it the next moment. His article is not very well organized, and some of his statements seem to be in tension with one another, to put it mildly.
He begins by taking "clinicians" to be an authority. At least, that is the best reading I can give to this:
Most clinicians would recommend tube feeding when there is a reversible process that temporarily prevents oral feeding, such as after esophageal surgery. Similarly, there are very few who would recommend tube feeding when the patient cannot eat because of an esophageal blockage caused by an untreatable cancer. This spectrum of conditions forces the question of where to draw the line.
Okay, so if someone has an esophageal blockage caused by untreatable cancer, we're supposed to let him dehydrate to death, even if it's going to take the full two weeks, even if he is not dying imminently of the cancer otherwise, even if he is fully able to assimilate food and fluids. Just because the throat's blocked by cancer, we should do nothing. And that's the conservative position. That's the extreme case where nobody in his senses would have any doubts about the propriety of denying food and fluids. We're just deciding where to "draw the line" between that and a mere short-term feeding tube during surgery recovery. Check.
I hate to say it, but this isn't a very promising start. Next, Dunlop moves to "benefits vs. burdens" of feeding tubes. Well, the benefit, so long as the patient can absorb and use food and fluids is, you know, that you don't die of dehydration over a period of 10-14 days, just like anybody would who was left helpless without food and fluids. Dunlop doesn't exactly put it that way, but he has to acknowledge that the benefit is that it "may allow life to be prolonged for decades in an otherwise healthy individual." He also says that "for some, starvation and dehydration are rather uncomfortable and provision of food and fluids contribute to comfort." Why does this have a strangely understated sound?
He then mentions that feeding tubes are "relatively easy" but considers this benefit something to be mentioned only "in a perverse sense." In other words, he feels uncomfortable about mentioning the ease of tube feeding, because he takes it that using a feeding tube for this reason implies laziness or unwillingness to engage in more personal care. In fact, he even implies that one should resist tube feeding because,
Some of these dear souls are relatively cut off from human touch and care. The only caring they may receive is at meal time. They should not be deprived of this for the convenience of a feeding tube.
This criticism, placed no less in the "benefits" section (!) proceeds, I'm afraid, from a certain amount of ignorance. Case in point: I have personal friends whose Down's Syndrome child eats by mouth but is unable to get enough calories in that way. They provide tube feeding during his sleep at night so that he does not starve to death. Moreover, those who care for weakened people who must receive all their feeding by hand or by tube know that it can be extremely difficult to provide what the patient needs in the way of calories and hydration entirely by spoon feeding, especially if one is being careful not to hurry in order to avoid giving too much at once and choking the patient. To put it bluntly, it's possible to give a baby all he needs by hand with a bottle, because he's just a baby and doesn't need nearly as much in a day as an adult needs. Tube feeding for the sake of ease of adequate feeding is just good sense and need have nothing to do with a desire to deprive a "dear soul" of personal contact. Nor need the two be mutually exclusive. It's probably quite a good idea for people who can eat by mouth to have spoon feeding as well as tube feeding so as to prevent the atrophy of the throat muscles and also, yes, as a form of personal interaction. But to make such personal interaction an argument against tube feeding is just misguided and may proceed from misinformation.
Dunlop then moves on to the burdens of feeding tubes, which include most notably the possibility of aspiration with an NG tube and the possibility of infection at the insertion site of a PEG tube. Dunlop does not mention or perhaps does not know that the danger of aspiration is more often a concern raised about feeding by mouth than about tube feeding and therefore is by no means unique to tube feeding. The danger of aspiration arises from the patient's weakened, semi-conscious, or unconscious state and from the very difficulty swallowing and feeding himself that gave rise to the need for him to be actively fed in the first place. Hence, aspiration worries are, if anything, a "burden" for feeding a weakened and helpless person naturally, and if this "burden" is allowed to bear much weight, would argue for not feeding at all those who most need our help with feeding. Indeed, aspiration is even a concern with bottle feeding for sleepy newborns and preemies, and mothers learn skills by experience that help them to be careful about it. So in the grand scheme, this is not something special about tube feeding and is indeed scarcely worth bringing up. The infection issue is something that requires watchfulness on the part of caregivers, but that is what nursing care is all about. In comparison to leaving a person without food and fluids until he dies, this is quite minor stuff.
Dunlop then makes the following rather surprising statement:
In considering burden we must realize that many people who die without a feeding tube lapse into coma fairly quickly and are unaware of any physical discomfort. Many are not conscious of hunger or thirst.
Really? How many? Are we talking here about people who weren't going to lapse into a coma anyway for some other reason? Are we talking about people who are not dying within the space of days (less than it would take to die of dehydration) of some other cause? Why do they lapse into a coma? You mean just from not receiving food and fluids they lapse into a coma before becoming aware of physical discomfort? This seems highly dubious. As far as I have been able to ascertain, mere dehydration does not produce coma prior to "being aware of any physical discomfort."
On the contrary, there is plenty of evidence that people dehydrated to death experience lots of pain and do not peacefully "lapse into a coma" rather than suffering discomfort. The "peaceful, painless death" story about death by dehydration for people whose bodies are not already actively rejecting food and fluids has been amply refuted, but Dunlop shows no awareness of this evidence. See here and (partially but not entirely overlapping) here. Even Dr. Cranford, an advocate of dehydration for the minimally conscious Robert Wendland, testified in court that Wendland would need a great deal of pain medication if Cranford’s recommendation of death were carried out. Cranford admitted that Wendland might, in fact, have to be put into a coma to escape the pain of dehydration.
In one of the apparent contradictions in the article, Dunlop himself appears to admit problems with this idea that death by dehydration is painless:
What discomfort there is can readily be handled by techniques to moisten the mouth and by using appropriate amounts of analgesics, such as morphine, administered under the tongue.
So we're talking about first causing a person so much discomfort from dehydration that he needs heavy-duty pain-killers like morphine (that sounds like a lot of discomfort to me) and then just administering morphine to take care of it. (Even the doctors who did not admit that Terri Schiavo was conscious put her on a morphine drip during her last days.)
Then we get these two paragraphs:
When the underlying cause of the inability to swallow is thought to be reversible, the feeding tube is used as a treatment. At some times the problem will be caused by surgery or by a stroke and recovery is expected. At other times it may simply be an expression of the patient’s weakness. In that scenario, a key way to gain strength is to provide adequate nutrition. There will be times, however, when a feeding tube intended to be treatment proves ineffective. By default it becomes an intervention to prolong life or to delay death.
Anticipating that situation, it may be wise at the time of insertion to put a time limit on it. For example, Grandma had a major stroke at 97, she is too weak to swallow, and without a feeding tube she will only get weaker. She has often said that she does not want to die “hooked to a machine.” Nevertheless, it may be appropriate to insert a feeding tube, hoping that perhaps within three months she will be stronger and able to swallow on her own. In three months, if she is not able to do that, we want to honor her wishes and discontinue the feeding tube.
So, if the person doesn't get strong enough to eat on his own, the feeding tube was "ineffective" as "treatment." Contrary to common sense, Dunlop does not regard the purpose of the tube as providing food and water, which we all need and which the patient needs. No, its purpose was to enable the patient to get "more better," as children sometimes say--to get well enough to eat and swallow on his own. If it doesn't do that, then it has failed and becomes that invidious thing, an "intervention to prolong life or to delay death."
Let's look at the case of Grandma as Dunlop describes it. In actuality, stroke patients can be fully conscious and are therefore among those who can easily suffer greatly when nutrition and hydration are withdrawn. On the old blog Right Reason I posted an account (no longer on line) given to me anonymously by a lawyer of one of her clients who had a stroke and repeatedly wrote the word "water" on a piece of paper. But the relatives did not want to send her to a nursing home, so she was left without the water she asked for and dehydrated to death. The case of Marjorie Nighbert, discussed by Wesley J. Smith in the Human Life Review article I linked above, is similar. Kate Adamson has testified to her intense pain when she was partially dehydrated after a stroke, though she was saved in the end. I have known of a friend of my own who suffered similarly, though I had no standing to do anything about the matter. So Grandma in Dunlop's scenario is hardly a good example for the case he wants to make of that peaceful slipping away into a coma without experiencing any discomfort. Nor is it clear that a statement that one "does not want to die hooked up to a machine" indicates a conscious, much less an informed, consent to be dehydrated to death rather than have a feeding tube.
In the next paragraph, Dunlop appears to contradict what he has just said about Grandma:
If the feeding tube is used in a patient who has a progressive terminal illness the tube may only delay death and the use of a feeding tube may simply prolong or increase the agony. The operative words are “progressive terminal illness,” which would include such conditions as cancer; kidney, heart, or lung failure. It would also include dementia and advanced age. It does not include someone who is stable though disabled after a brain injury or stroke. In the context of progressive terminal illness it can be argued that tube feeding should generally not be done. When the patient dies the ultimate cause of death is the underlying disease, not starvation or dehydration. [Emphasis added]
But wasn't Grandma "stable though disabled" after a stroke? Dunlop only said that she would get weaker if the feeding tube were withdrawn. Who wouldn't? So there is an apparent inconsistency here.
Let's look at his category of "progressive terminal illness." Dementia and advanced age are progressive, terminal illnesses? Isn't that questionable? By this logic, it would seem that 97-year-old Grandma can legitimately be deprived of food and fluids even if she doesn't have a stroke and is able to swallow--if, perhaps, she is merely unable anymore to sit up and safely feed herself. After all, she suffers from the progressive, terminal illness of advanced age. No doubt, Dunlop did not mean this, but his list is extremely faulty with the inclusion of those two conditions. Even in the case of cancer, the fact that the person has cancer does not mean that the person is imminently dying of cancer. People, of course, live with cancer for years.
Dunlop's airy claim that anyone who has any of these conditions, is denied tube feeding and hydration, and dies, dies of the underlying condition seems much too quick. It seems rather that the question of what the person dies of is best determined by how he is expected to die. If a person with dementia requires tube feeding, is not given it, and dies over the standard dehydration period of ten to fourteen days with progressive symptoms of dehydration, then he dies of dehydration, not of old age and certainly not of dementia. If that is the expected course of death, then whether we admit this to ourselves or not, we are contemplating dehydrating him to death rather than his dying of his "underlying condition."
Now Dunlop moves on to cases where there is not even what he calls a progressive, terminal illness.
In the absence of a progressive terminal disease, the feeding tube may be used to prolong life. Since the patient is not dying of another cause, discontinuing the feeding tube would imply a desire to cause the patient’s death. It is in this context that most of the controversy occurs.
If the patient is able to express her views now, or in the past has clearly expressed her desires on this issue, they should be heeded. All too frequently, however, a statement is made in very categorical terms whether or not to use a feeding tube. It would be wiser, rather than saying yes or no, to discuss the context in which they would not want a feeding tube and allow for situations where they would be willing to have one.[Emphasis added]
What becomes evident on reading these paragraphs is that Dunlop is not willing to say that it is wrong to withhold ANH even when the patient is not on anyone's definition, even his very liberal one, dying of some other cause. Even when, by his own admission, the refusal of nutrition and hydration would cause the death and would "imply a desire to cause the patient’s death," Dunlop is unwilling to make a clear statement. Heaven forbid we should be categorical even about causing people's deaths by withholding food and fluids.
Dunlop makes a similar nod to consent here that Rae does, but unlike Rae, Dunlop does at least go on to discuss situations where the patient does not have views or has not expressed them. (This would, of course, include the case of infants and of people who have been severely cognitively disabled all their lives.)
If there is not a clear understanding of the patient’s wishes in the particular situation, the decision falls to the designated power of attorney for health care or whoever is in the decision-making role. Few of us would choose to be severely disabled and we would not want that for our loved ones. Yet, as Christians, we do not consider the lives of the severely disabled meaningless. They are made in the image of a God who loves them and is working for the good. The love that we show them may demonstrate the love of God to a watching world.
The difficult situation lies with the patient who is mentally incompetent, has not left clear instructions, and is dependent on the feeding tube to live. The tension for the Christian is to choose whether to emphasize the value of life and the fact that death is an enemy to be avoided, versus affirming the Gospel and seeing death as a defeated enemy by Christ’s own death and resurrection.
Well, that's an unbiased way of putting it. We can either emphasize the value of life or we can affirm the Gospel. Hmm. Wonder which one he wants us to pick? Once again we get the leap to theology, and interestingly, here too it comes at just the point where it seems like we are thinking the unthinkable: Here is your disabled daughter who has never expressed, perhaps never even had an opportunity to express, her wishes on tube feeding. She is not dying. (Remember? We got here by going through the "not dying" part of Dunlop's discussion. That's part of the scenario, or at least one scenario, in view here.) Refusing her nutrition and hydration will cause her death.
But instead of saying, "Well, that would obviously be wrong," Dunlop starts talking about the "death is a defeated enemy" theme again, as did Rae. It solves nothing. Nothing at all. If you are, by Dunlop's own admission, causing a helpless person's death by refusing food and fluids, you can say "death is a defeated enemy" until you are blue in the face, and it will have no ethical implications that permit you to do that thing. (I really cannot help wondering in what article or seminary this phrase was first dreamt up and applied to these situations as though it had some sort of magical power to make the contemplated action morally acceptable. Or maybe I don't want to know.)
Next Dunlop moves to the ordinary/extraordinary distinction. Finally! But there's nothing there, either.
Do we consider feeding tubes ‘ordinary’ or ‘extraordinary’ care? This is the key question in the minds of many. It may boil down to the trite “What would Jesus Do?” in a very non-trite sense. If we view feeding tubes as ordinary, they fall within the purview of Matthew 25:35-40 where Jesus commends those who feed the hungry and give drink to the thirsty, even though they are “the least of these.” It is certainly expected that we give food and nutrition to the needy. The question is, “are we expected to use feeding tubes?”
Perhaps a distinction better than ‘ordinary’ versus ‘extraordinary’ is the concept of proportionate versus disproportionate care, which was introduced by Pope John Paul II in his Evangelium Vitae of 1995. This moves the decision from the blanket “yes, no” response into the realm of “maybe.” In other words, it makes the decision context-dependent. It allows for the application of the law that Christians are under: “the law of the spirit of life in Christ Jesus” (Romans 8:2). As believers, we are not free to do anything we want; rather we are freed from the forces that have kept us from doing what is right.
So after introducing the distinction and admitting that it might be important, he drops it. "Perhaps a distinction better than..." He then throws in an ecumenical reference to JPII. I cannot tell when this article was written or last updated, but if we Protestants are to start referring to Catholic documents on this subject, we might want to refer to the Catholic document that discussed this very subject and that, to the consternation of some, stated that feeding tubes are usually to be deemed ordinary care. This statement was supportive of the statement JPII himself had made in 2004 to the effect that tube feeding should generally be considered ordinary care.
As a Protestant, Dunlop is not required to agree with any of this, but if he is going to bring in JPII and Catholic statements, it would be a good idea to update the article so as not to make it sound like official Catholic statements on this question have somehow replaced the ordinary/extraordinary distinction with a proportionate/disproportionate distinction or that a "Catholic" approach somehow favors Dunlop's own position. It does not.
Dunlop's article is disappointing. Dunlop shows a lack of information and even misinformation on the subject he addresses. He rejects the common sense view, which (though he doesn't seem to know this) dovetails with the Catholic view, that provision of food and water is ordinary care. He entertains with equanimity the disturbing prospect of dehydrating to death a non-dying person, including one who has not even expressed any such wish. And to deflect horror at such a prospect, he introduces pointless theological reflections and biblical quotations and phrases. Although his discussion is far more detailed than Rae's, it does not support his conclusion.
Update: My original summary of Pope JPII's comments as well as of the CDF document was faulty. I did not have the Pope's original comments in front of me and also did not check the CDF document and my own summary carefully. The CDF document actually says, "The administration of food and water even by artificial means is, in principle, an ordinary and proportionate means of preserving life." And JPII, in almost identical words, actually said, "I should like particularly to underline how the administration of food and water, even when provided by artificial means, always represents a natural means of preserving life, not a medical act." Instead of qualifiers like "usually," these statements use the phrase "in principle" or the word "always," which are quite different. The CDF document continues by saying that it is obligatory "to the extent to which, and for as long as, it is shown to accomplish its proper finality, which is the hydration and nourishment of the patient." This allows for withholding food and fluids when they cannot accomplish the hydration and nourishment of the patient, but does not say that nutrition and hydration are ever "extraordinary care." I apologize for the carelessness on my part that encouraged a misunderstanding of the statements.