Monday, June 07, 2010

Ordinary care and "expensive" lives

I am not Catholic, but a recent conversation elsewhere has brought back to my mind the fact that the USCCB has implied that a means for preserving life may be "disproportionate" if it imposes "excessive expense."

Some people attempt to use this loophole to justify the murder (yep, I call it that) of helpless people like Terri Schiavo by depriving them of mere nutrition and hydration. The claim is that it is "excessively expensive" to "keep alive" someone like Terri.

My own strong preference would be for understanding ordinary and extraordinary care in biological terms, in terms of whether the body is actively dying, in terms of what everyone needs, and so forth, rather than in terms of expense. But it may be expected that the ordinary/extraordinary distinction will track the "very expensive/not-so-expensive" distinction, on the assumption that extraordinary care involves expensive technology.

People--especially Catholics--who want to excuse depriving the Terris of the world of mere food and water via a perceived "expense" loophole in the Church's teaching need to be brought up short by the following consideration: It is not the "artificial" nature of the nutrition and hydration that are the chief cause of expense for such helpless people. It is the fact that they live, are helpless, and need ordinary care: things like diaper changing, being turned in the bed, bathing, etc. This sort of care is what is most expensive, especially if the people closest to the helpless adult are unable because of strength considerations or unwilling to do that work.

Thought experiment: Suppose that a helpless, severely disabled adult like Terri were magically made able to survive without food and water but still needed day-to-day bodily care. Would the "expense" of her life be drastically decreased? I say that it would not. It's not the cost of the insertion of the PEG tube nor the cans of adult "formula" that are the heaviest expense. It's the fact that the person is alive and needs to be cared for as a baby would.

But so what? Question: Do we consider it "medical care" to bathe, clothe, change, and otherwise care for a baby? Do we consider such normal forms of care to be "extraordinary" or "disproportionate"?

The care of helpless adults is deemed "medical" because their being helpless means that something is wrong with them and also, practically, because it is so much more work to take care of them and is best done (though not necessarily done) by those with special training and a good deal of physical strength.

Once we realize that it is paradigmatically ordinary care that is so expensive for these people--"expensive," at least, in terms of time and effort, even if able to be undertaken by loving family--that it is simply their existence as helpless people that is expensive, I think we will realize that it is the merest sophistry to talk as if it is their "artificial" feeding that is "extraordinary" or "excessively expensive" and focus on that as an excuse for getting rid of them. One irony here is that tube feeding actually decreases the difficulty (and hence, the expense) of caring for a helpless person. It enables that person to get the necessary nutrition and hydration fairly easily, where spoon feeding would be much less efficient, enormously more time-consuming, probably would not provide adequate nutrition to an adult, and takes more skill to do safely.

The issue, then, is not that tube feeding is specially expensive, hence extraordinary, hence conveniently optional. The issue is that people who can't care for themselves need a lot of care.

But we knew that already. And if someone thinks that morally excuses dehydrating them to bring their expensive lives to a quicker end, he has a major problem.

(Warning to liberal trolls: I have a delete key, and I'm not afraid to use it.)

30 comments:

alaiyo said...

My father is one of the helpless people you describe . . . However, he can eat on his own, mostly (sometimes he has to be helped). My mother is 88 and small-boned and there is no one who can take care of him at home, so he is in a -- very expensive -- nursing home, where they have to care for him in every way, yes, just as though he were an infant, except for feeding him. The expense is precisely %0.00 less because he doesn't have a feeding tube; it would not add a penny to the charges (but would make the nurses' lives easier, as you say). I am so enraged by those who make these abstract arguments about expense and quality of life . . . and I think "that's my father you're describing and you have no right to say that MY FATHER is not worth the care he receives."

I know the cultural forces that have led us to this place where imperfect people (whether elderly as my father, or congenitally impaired as my preemie granddaughter, or injured as Terri) are seen as animals to be put down for the convenience of the rest of us -- and still it never ceases to horrify and enrage me that it's happened, and that even people who seem to be decent and God-fearing in so many other ways have bowed to this as though it is wisdom instead of directly from Hell.

Lydia McGrew said...

You have a very good point, Beth. People in your father's position are a sort of obvious "test case" for the "expense" claim.

Keep him eating by mouth as long as you possibly can. The steps successively from the statement "This patient is on a feeding tube" to the statement "This patient is _unable_ to eat naturally" to the statement "This patient is being kept alive artificially by life support" are much smaller, sociologically, than one would like to think. I have some friends whose Down Syndrome son cannot get enough calories by mouth. So he has a J-tube and also eats by mouth. That's a good thing when it can be arranged, even when tube feeding is needed for the person to get enough nutrition.

William Luse said...

"...the USCCB has implied that a means for preserving life may be 'disproportionate' if it imposes 'excessive expense.'"

If there are people who think that any expense on earth can override the prohibition against murder, I'd really rather they didn't call themselves Catholic.

Lydia McGrew said...

Here is the quotation:

"While every person is obliged to use ordinary means to preserve his or her health, no person should be obliged to submit to a health care procedure that the person has judged, with a free and informed conscience, not to provide a reasonable hope of benefit without imposing excessive risks and burdens on the patient or excessive expense to family or community."

http://www.nccbuscc.org/bishops/directives.shtml

If you'll excuse my saying so, someone in the USCCB's office should have rethought that one before promulgating it. The potential for abuse of it is pretty obvious.

Foxfier, formerly Sailorette said...

Me, too, William.

I understand why USCCB wanted to dance around PVS for political reasons, but they didn't do very well. They REALLY should have emphasized that "you can not dehydrate someone to death" is a binding thing. Or even just emphasized the whole "no actions that cause a death" thing....

Maybe cut-and-paste this.

(please delete my post if this is far too much quoting, I don't want to spam up your page!)
The bishops also asked for clarification as to whether nutrition and hydration could be removed if physicians determined that the patient would never recover consciousness. The Congregation affirmed that the patient must receive "ordinary and proportionate care which includes, in principle, the administration of water and food even by artificial means" regardless of the prognosis of recovery of consciousness.

A Vatican commentary noted some possible exceptions.

"When stating that the administration of food and water is morally obligatory in principle, the Congregation for the Doctrine of the Faith does not exclude the possibility that, in very remote places or in situations of extreme poverty, the artificial provision of food and water may be physically impossible," it said.

"Nor is the possibility excluded that, due to emerging complications, a patient may be unable to assimilate food and liquids, so that their provision becomes altogether useless. Finally, the possibility is not absolutely excluded that, in some rare cases, artificial nourishment and hydration may be excessively burdensome for the patient or may cause significant physical discomfort, for example resulting from complications in the use of the means employed."

"These exceptional cases, however, take nothing away from the general ethical criterion, according to which the provision of water and food, even by artificial means, always represents a natural means for preserving life, and is not a therapeutic treatment. Its use should therefore be considered ordinary and proportionate, even when the "vegetative state" is prolonged," it added.

Lydia McGrew said...

Yes, those Vatican clarifications are very useful. I'm always suspicious when I encounter someone who quotes the USCCB statement about "excessive expense" while _not mentioning_ the express Vatican clarifications on this very subject.

Anonymous said...

just happened on your blog and had to comment. I feel that money should be taken out of the discussion on the terminally in care or whatever you wish to call them.

The truth is that this extraordinary care, is extraordinary because in most cases it does nothing for the patient. Most such patients are merely a shadow of their former selves, a lifeless body stuck in agony because they are helpless. Imagine being stuck in a bed thinking, listening to your loved ones but being unable to talk or in any way communicate with them. That is HELL, not some imaginary place with fire and pitch forks.

The care is aimed at their loved ones. People like Alaiyo who cannot let go, and must insist to put their loved ones through hell, just so that they can feel better about themselves, just so that they do not have to face the reality, that it's time to grow up and move on.

I have had 2 relatives in this state. One of them I had no say in the situation and the care was given, leaving the family under strain for 12 years. Another I did, my own father and I told the doctors that the first chance they get, they are not to revive or extend his life needlessly. Because my father was the man that joked around, read books, cooked meals with us and a person we could talk with about anything, not a body stretched out on a bed with tubes going into it.

So here's the reality, someone falls into a veg state from which there is no chance of return, and we waste the time of good workers, by sending them to take care of said veg, instead of a patient who REALLY needs care. That's why the plug should be pulled. You all just need to grow up, stop reading the fairy tales, and enjoy the time with your living families, not living bodies.

romishgraffiti said...

Thankfully, there are people who don't believe in Hell and judgement, but still manage to hold that it is wrong to deliberately kill another innocent human being. I suppose some might shoot back that in PVS there is no person to kill, but frankly, I've yet to see the scoffing gradma-killers come up with a view of humanity that wasn't arbitrary, subjectivist to the point of absurdity, or reliant on unproven axioms that require as much faith as say, a believe in God.

The Masked Chicken said...

Anonymous posted:

So here's the reality, someone falls into a veg state from which there is no chance of return, and we waste the time of good workers, by sending them to take care of said veg, instead of a patient who REALLY needs care. That's why the plug should be pulled. You all just need to grow up, stop reading the fairy tales, and enjoy the time with your living families, not living bodies.

The workers's times are not being wasted. Indeed, they are being given a chance to practice heroic charity.

What part of honor thy father and mother did you not understand? The concept of honor in the Mosaic Law is not quite what we think of in the modern West. The concept is more akin to what the New Testament means by the word, markarios, or blessing. One's father or mother is not blessed in the action of a child that goes against the law of God that says, "Thou shalt not kill."

More than that, by that logic, suppose a mother has a newborn, but the mother is in a wheelchair (broken spine due to a car accident that also killed the father) and cannot care for the infant without expensive help. By the logic of the anonymous poster, the child imposes an excessive financial burden on the mother and should be killed. One could argue that the mother could give up the baby for adoption to a family that can care for it. Well, if caring for a parent is too much for an individual, in a truly Christian society, there could be adopt-a-parent programs where either the community or a group of individuals or a rich person could take over the financial burden.

In a wealthy society, especially, the notion of excessive economic burden is unsupportable. Shame on the USCCB for being so short-sighted. Indeed, they should have called for greater involvement by the Christian community in these cases.

The Chicken

Lydia McGrew said...

Let me also add, Anon, that insults against my readers of the sort, "So-and-so, who has a father who suffers dementia, cannot let go of her father because she doesn't want him killed" will not be tolerated. Also, as Wesley J. Smith likes to say, and as I proudly follow him in saying, we don't use the "v" word around here. It's unfortunate enough that the phrase "persistent vegetative state" has entered the legal literature, though it semi-delicately uses the adjective form of the "v" word. But I don't allow people to say, "take care of the veg" around here. One warning should be sufficient.

品華 said...
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alaiyo said...

Let me just add that not all people who need nursing home care, including feeding tubes, are not capable of responding. "Let go"??? Let go of a man with whom I had the loveliest conversations during my last, recent, visit? Yes, I had to strain very hard to understand his words often, and sometimes we had to resign ourselves to a hug instead of understanding, but his mind is just fine, thank you, and my mother and I treasure this time of being able to continue loving him and being loved by him; for me, it's giving back so much that he gave to me over all the years, by loving him and seeing that he is cared for with the dignity that he deserves as a human being. But even if he becomes like my father-in-law in not being able to respond to us, we will continue to make sure he receives the best care possible because he is a HUMAN BEING created in the image of God and who is not to be treated like a dog instead. Let go, indeed.

Lydia McGrew said...

The chief value of comments like Anon's is the way they bring the mask off. Alaiyo has made it clear that her father is eating on his own. So this removes the sophistical excuse that a person is "on life support" and that one is merely "letting" the person die by removing some "tube" (and people have phobias about "tubes"). He's not imminently dying; he requires only daily care. Yet Anon comes on, reads the comment, and starts blathering about "letting go." _What could that even mean_ in such a context? When active killing is legal everywhere in the U.S. as it is in various parts of the European continent, what that euphemism will mean will be, "Get together with the family and plan to ask the doctor to give the elderly person a lethal injection without consent."

The pretense that this is all about "not forcing people to receive unwanted, extraordinary treatment" is becoming increasingly hard to maintain. Yet there are still people (as you have seen with some of my commentators at W4) who will maintain that pretense.

Foxfier, formerly Sailorette said...

I think it may boil down to guilt.

Think about it-- if you "pulled the plug" on a relative, wouldn't you be rather touchy on the subject, and violently lash out at anything that comes even CLOSE to making you feel guilty? (See also, abortion.)

William Luse said...

"If you'll excuse my saying so, someone in the USCCB's office should have rethought that one before promulgating it. The potential for abuse of it is pretty obvious."

Yes it is, and I complained about it in my first post on Terri. Many years ago.

teacher.paris said...

Thank you for your blog.

Anonymous said...

First of all my sincere apologies to Alaiyo, I had only skimmed through his comment and didn't realise that his father's case and condition had NOTHING to do with that of someone like Terri.

Which brings me to my point, the original post was discussing people that are in Terri's situation (I have to refer to them as such since you took away my noun) and not old people who are put in a nursing home because they can no longer take care of themselves or need a lot of care.

And trust me, I was NOT referring to the latter in my post.

As for your replies:

The Chicken - I stated in my post, remove the question of money from this discussion, it should NEVER be about money. Killing someone over money is what the mob and rednecks do. Bad Chicken. As for honouring thy parents, I do honour them, by not letting them waste away wishing they were dead. For trust me, my family's greatest shared fear is that of being trapped in our mind without a way to communicate. Your baby comparison is like comparing a potato to a tomato so I won't even bother with that.

Alaiyo - once again I'm sorry because I didn't read your comment thoroughly. Luckily your father isn't even close to the state in which Terri Schiavo was, and I'm glad you can still communicate with him.

Lydia McGrew - Your comment is based on the misunderstanding so there's not much I can say about that. I hope you understand that I never meant lets get rid of anyone that needs help, only the undeniable fact that the treatment that was being given to Terry Schiavo was of no benefit to her. If you consider that case, her brain had degenerated immensely so much so that a large area of her brain had turned to liquid. That means, that she was no longer operational, the only reason that she was still breathing and the basic bodily functions where still on, was because the area of the brain that was effected didn't include the area which took care of these functions.

So my question is this : Who was benefiting from that treatment? Because it wasn't Terri Schiavo, a body does not constitute a person. What good was coming from those man hours spent taking care of her body, and others like her? Wouldn't they have been better off helping the new mother who's in a wheel chair for life?

alaiyo said...

If my father wee in the same condition as Terri, my attitude would be precisely the same. In fact, except for being able at this time to feed himself most of the time and to still communicate, albeit with difficulty, with us, he IS in the same condition IN TERMS OF the expense of caring for him: it is no less expensive to care for his failed body because he can still talk to us.

Terri's care was not taking care away from anyone else's, nor is my father's.

All HUMAN BEINGS, who are created in the image of God, deserve the dignity of whatever care is needed until He takes them through natural death. They are not animals to be put down because their existence is inconvenient to us. Terri deserved the care she received and would have received had she been allowed to live; no woman in a wheelchair with a newborn would have been denied care because she was receiving it.

I cannot continue this discussion in Christian charity, but I hope that I have made myself absolutely clear.

Foxfier, formerly Sailorette said...

. Killing someone over money is what the mob and rednecks do.

...I think that tells you about how noble this guy is; yay, supporting the socially acceptable bigotries. Killing the disabled and hating lower-class whites. Wanna throw in a gratuitous slam against Christians while you're at it?

It is most assuredly "disputable" about how much having food and water was helping Terri, since removing them killed her.

You also apparently didn't hear about this story.

So nice to see that the utilitarian outlook is alive and kicking, with its favorite crutch: the false dilemma.

Foxfier, formerly Sailorette said...

Terri's Brain

The Masked Chicken said...

The discussion in this post was supposed to be about extraordinary cost as a reason to end care. I have shown several ways to ameliorate that difficulty. This is not supposed to be an issue in the West. The USCCB, it seems to me, overextended an idea that was originally put forth to deal with situations of extreme poverty (and if we are our brother's keeper, such situations should call forth charity from the community).

The so-called quality of life arguments presuppose a view of life that allows man to assign a merely human view of what life is. I say, if you made it, you can take it. When a doctor can create life ex nihilo, then he gets the right to take it.

A man lying in a bed, unable to speak, can still be a powerful witness to the dignity of the human soul. Those people who regard the body as just a shell for the soul do not understand the Incarnation. Man was meant for body and soul. That they may be separated temporarily at death does not mean that the body is less important to what it means to be human than the soul. Letting a person die so as to "release" the soul violates the normal environment of the soul as much as it does the body.

Christ was resurrected body and soul.

In Catholicism, there is the concept of redemptive suffering. By virtue of our baptism, we have been incorporated into Christ's resurrection, but also his death. As such, by supernatural charity, we may offer up our suffering in union with his to make his salvific act present to the world, even now. The world can no longer see Christ, the head of the mystical body of Christ, but they can still see his body in the world and that body is a body fitted for a cross. Jesus said to take up one's cross, daily. Those people suffering in a nursing home have a cross to bear. The world does not want to see it and a world that denies the cross denies Christ. Those crosses, if borne in resignation, can be the source of many graces.

Anon, you may never have had the chance to test this, but if you are ever in a difficult spot and need prayer, ask someone who is suffering to offer up a half-hour of their suffering for you. If you could only see what God sees. God does not see merely that person suffering. He sees his son in that person, participating in the same suffering on the same Cross as on Calvary. It is because of their love for Christ that the person wishes to be united to him, even in Christ's suffering. The person participates, by their baptism, in the merits of the Cross, including the witness of suffering.

St. Paul said that he preached a Christ, crucified. He warned that it would be a stumbling block. People who do not understand the humanity of Christ do not understand the purpose of human suffering.

God would not let men kill his son on the Cross until Christ laid it down to the end of his own free will so as to set the example that it is God who ordains the time to die, not men.

People in hospital beds may be doing so much more for the human condition that a whole army wide-awake men bent on following their own wills.

As for the Shiavo case, although it is not something I want to bring into this conversation, her parents were more than willing to pay for her care. They have that right (or should have had that right), even if you do not agree.

Also, show me proof that parts of her brain were liquified. I know of no such tests that showed this. There are only a few conditions that produce liquification of the brain, such as ionizing radiation.

The Chicken

Lydia McGrew said...

Sometimes I think that the question of expense arises from the truism "ought implies can." That means, of course, that if you literally cannot do something, there is no duty to do it.

As Chicken says, conditions of extreme poverty or other conditions--the proverbial "being lost on a desert island"--are those where, of course, there are no feeding tubes, etc.

Sometimes people will bring up a hypothetical. I've had one pro-life lawyer say something like this to me in e-mail: "Well, okay, but _what if_, contrary to fact, a feeding tube were this incredibly expensive technology, so that a family could not afford one without all the rest of the members of the family starving?" (Lawyers are like a sort of caricature of philosophers. But some philosophers are like this, too. Bring up something totally crazy to "push the envelope.")

What people need to understand is that if you cannot do something ideal for the person, then you do what man has done from time immemorial: You muddle through. You do the best you can. You spoon feed, use a syringe, whatever you can find. Whatever you can do. Maybe the person dies, because you cannot get enough into him, but you did what you could in the situation in which you found yourself.

Now, of course, in the _real_ world, if we took this "muddling through and doing our best" approach, there would be no question and no problem, because in fact the tube feeding itself isn't where the expense lies.

The Masked Chicken said...

Anon,

I don't think you meant the brain liquified. I think you might be thinking of the a condition called hydrocephalus (water on the brain) where in the cerebral spinal fluid (CSF) cannot circulate freely and gets trapped in the brain causing swelling, pressure, and tissue necrosis. The condition can be caused by a number of things, including traumatic brain injury. In Terri's case, the CT scan shows a condition called, hydrocephalus ex vacuo, which occurs after the CSF is evacuated leaving a lacunae where the tissue has been compressed. Such a condition can also occur in other neurological conditions, such as some cases of schizophrenia.

Terri's brain cells did not liquify. They were compressed. This does not mean that she was in a (sorry, Lydia) vegetative state. She might have been in a minimally conscious state.

I am just trying to clarify the issue in the Shiavo case, not introducing it for extended discussion. Sorry if I were a bit uncharitable in my earlier remark about the brain liquification.

The Chicken

Lydia McGrew said...

Actually, Chicken, I don't think that was uncharity but rather a call for clarity. I have just run into this "liquification" nonsense in the very conversation that prompted this post. In that conversation, the phrase used was "liquification had already set in." Get that? It implies that the person believes that Terri's brain was decaying, literally turning to liquid. People believe that. They really do. And it's a result of the sloppy ways of talking that you were questioning.

Don't worry, Chicken, I knew what you meant. I allow people to use the entire phrase persistent vegetative state or PVS, but I don't allow the noun form used for a person as if it were descriptive, as in Anon's comments above. I allow the entire phrase simply because it is believed to describe an actual condition and has (though unfortunately) entered the legal and medical lexicon. Of course, people rightly question whether there is what we might call a natural kind--a real, single, detectable condition--that the phrase refers to. I tend to think that's questionable and that diagnosis should be done _very_ tentatively. It's also a highly unfortunate phrase. So for preference, I like scare quotes around the phrase or even something like "what is known as a persistent vegetative state." But I only get really draconian when people say, "Oh, if someone is really a vegetable." No human being is a vegetable.

The Masked Chicken said...

No human being is a vegetable.

The Jolly Green Giant is not amused.

Sorry, I had to say it.

The Chicken

Lydia McGrew said...

Nah, he's just a large, green, humanoid.

AT said...

The USCCB statement has a legitimate application other than that for helpless people (where it may be ambiguous). For example, I have a heart condition that causes 90% of the people with it to die within a year of diagnosis. I'm still alive 6 or 7 years after diagnosis. It was recommended to me to have open heart surgery to repair 1 or more leaking heart valves but because there was no way I could afford the expense (even with some insurance) I declined (with the expectation of soon dying). This decision is completely moral and in line with the USCCB statement (which has been part of Catholic teaching in these matters for a long time; I remember discussing it in high school 50 years ago).

The Masked Chicken said...

The thing is, in a Christian society (which, apparently, we are not), expense should not be a deterrent. In the imaginary good-old-days of first century Christianity, if a family could not afford something, the Christian community came to its aid. That should be the case, here, so that poverty should not, generally, be a factor in these decisions. The USCCB statement is correct for places where there is extreme poverty within the entire population, but in the West, this should not be so, since charity should be the norm and expenses covered by the Christian community.

I'll go back to combing my flying horse and talking dog, now.

The Chicken

Lydia McGrew said...

AT, I think the trouble is that the USCCB statement gets quoted without a distinction between ordinary and extraordinary measures. In fact, the way it was used in the conversation that sparked this discussion was precisely that the person on the other side argued that even nutrition and hydration _become_ "heroic" (i.e. extraordinary) if the "expense to the community" is too high. Not only did he not distinguish between the expense of the procedure/treatment and the expense of the person's life, he actually said _outright_ that it was Terri's "24 hour care" that was so expensive, without seeming to realize where that takes us. (Answer: Straight to hell.)

And I know that there are definitely other people who think the same thing. If the paragraph was originally written (I don't know the full history) when no one would have even thought of withdrawing food and water and it was contextually clear that they were talking about major surgery and the like, then it should be updated or a footnote added to remove the implication that merely feeding people is not required if their lives "impose excessive expense on the community."

William Luse said...

Also, the key phrase in AT's statement is "I declined." The difference between refusing care and being denied it (to the extent that it kills you) is rather crucial. The USCCB statement cannot be interpreted to permit the latter.