I've been reading a lot of blogs, trying to make sense of the happenings with Terri Schiavo and related issues.
First, in this country competent adults have the right to decline medical treatment. This is a very good thing, since many of the things doctors do to their patients would constitute assault if done against those patients' wills. It is this right that allows cancer patients to decide not to undergo that last excruciating round of chemo that would give them only a slight chance of survival, Jehovah's Witnesses to refuse the blood transfusions that they believe it would be sinful to receive, and people with painful terminal illnesses to refuse treatment for other diseases, like pneumonia, that offer them the chance of an easier death. This right is extremely important: without it, we could be subjected to serious assaults on our body without our consent, so long as some physician said that those assaults were medically necessary.
Second, courts have held that for these purposes, nutrition and hydration count as life-prolonging treatments, and thus that competent adults have the right to refuse them as well. This is also important: having a feeding tube
inserted is a serious violation of a person's bodily integrity, and people have the right to refuse it....
In the comments on a previous thread, in the course of a discussion about the difference between withholding treatment and killing, felixrayman wrote: "If she isn't fed, she'll be dead in a week or two. There is no substantial difference here." There is no substantial difference in the outcome of the two, in this case. Likewise, when a terminal cancer patient declines chemo, and a court upholds her right to do so, the outcome is the same as if someone shot
her, since in both cases she dies. But there is a huge and important difference between what is done to produce that outcome. In the first case,
the reason the patient dies is that she has decided to refuse treatment. If we deny her that right in cases in which she will die without treatment, we are denying her the right to determine what happens to her body. By contrast, if I shoot her, I have not just accepted her autonomy; I have taken matters into my own hands and killed her. As I said in another context, consent makes all the difference (and that post contains several other examples of cases in which "there is no substantial difference" in outcomes, but a very substantial difference morally.)
... We do not act to rescue people's lives whatever the circumstances. We do not force cancer patients to undergo that one last desperate round of chemo on the grounds that it might save their lives, and that this outweighs the violation of their autonomy that forcing chemotherapy on them against their wills would represent. We place autonomy first, allowing patients to decide for themselves which treatments to undergo, even when their decisions shorten their lives. I think this is as it should be. But if one accepts this, then it's hard to see how we can also say that we should never accept evidence that an incompetent patient would choose to refuse treatment on the grounds that we might be wrong. To take that view is to protect life at the expense of patients' autonomy, which we rightly do not do.
This is the most balanced explanation of this particular viewpoint that I have read. But it does frighten me to think that we value autonomy so much more than life. What if that judgment about what the person would want is wrong? Then we have taken something from a person that can never, ever be given back. I don't think things will change in this country--or in this world. But I don't like it, and I am afraid that some "pro-autonomy" person could take my right to live as easily as he/she thinks I could take his/her right to die. Under what circumstances would a person's advanced directives be overridden? How should disputes about a person's wishes be settled when the person left no written instructions?
It is an interesting, and perhaps vastly unsatisfying element of the Terri Schiavo case that the manner of letting her die is starvation. If the decision is to let her body die, why take what is arguably one of the most morbid paths to that end? Why not do it quickly by another method?
As I see it, it is the result of what I consider a flawed philosophical viewpoint: that being passive, that by withholding action, we absolve ourselves of responsibility.
There is the belief that if we actively do something, then we are responsible for that action and for the outcome. However, if we are able to act but decide not to, then somehow we have no responsibility for what happens as a result. This belief may seem reasonable at a glance, but a deeper consideration reveals that it is hollow at best, and an excuse for unethical stances at worst.
It is my opinion that we cannot, in most situations, choose what we are and are not responsible for; that determination is made by what we are able to do, not by what we choose to participate in. If you are able to act but decide not to, then you are just as accountable for the result as if you took direct action instead. In short, responsibility does not stem from action, it stems from choice. Both action and inaction are choices, and both result in personal responsibility.
But we fool ourselves by saying that since we did nothing, that we are not involved, and so nothing can be our fault. That's wrong, and it can easily be proven so. You walk down a street and see a person immobile and bleeding to death. No one else is in sight. You have two options: call for help and save the person's life, or walk away and let them die. Sure, you weren't the one to hurt them in the first place, and no, you did not choose to find them. But could you truly walk away with a clear conscience? The answer is, of course, no. Inaction would have consequences just as clearly as action would; your choice determines your responsibility. If you walk away when you could save that person, then you are just as responsible for their death as the person who hurt them in the first place, because your choice caused them to die.
This choice is often mitigated, in the eyes of many, by personal sacrifice. What if saving the person's life would cost you something? What if you knew that it was a gang killing and there would be retribution against you? In that case, you would have to balance the risk to you and the responsibility of causing that person to die. There is a point at which it might be understandable, if the risk to you were excessive. Few would fault you for not jumping onto the railroad tracks to save someone about to be hit by a train if there were a fifty-fifty chance that you both would get struck and killed.
Less exonerating is the "why me?" factor. I didn't choose to be put in this situation, so I should be free to leave it. Well, it may suck to have to make a choice like that, but life isn't fair. If you find yourself with the choice to act or not act, then the responsibility is yours, like it or not. "It's not my problem" is an excuse, not a reason.
Then there's the question of how far this idea can be taken. For example, I always have the choice of keeping all my money for myself and buying cool and comfortable stuff to make my life more enjoyable. Or I could get a minimally livable apartment, eat as cheaply as possible, not get myself any goodies and stash away just enough to survive in retirement--and give every other cent I earn to people who need it more than I do, so they can avoid disease, starvation and have enough to survive. The choice is mine. If I am selfish, I keep the money, but by doing so, I let others suffer who could have used that iPod money for food and medicine.
Few people would accept that mantle of responsibility. Partly that is because of the "not my problem" philosophy of passive avoidance, but also partly it is because in order to achieve true parity, we would have to impoverish ourselves to the same extent as the poorest people on Earth so as not to be indirectly responsible for their suffering. Again, we meet up with the question of how much taking action will cost us. Then there are the less satisfactory excuses we hide behind: I can't save the world by myself, I earned everything I make and those people didn't, others are in a better position to help, I didn't do anything to make them poor or sick--or even the compromise of giving a small amount, perhaps even tithing, to salve our conscience and make us feel like we've done our part.
In the end, however, I think that we cannot absolve ourselves here. The fact is, we are selfish. We do admire people who are willing to give up everything for others, but let's face it: most of us are not like that. It doesn't mean we are not responsible--we are--but we should realize and accept that this is what we are. Let's not bandy excuses or try to justify ourselves. We're selfish, plain and simple. It's a bad trait, but it is what we choose. Accept it.
Now, this is about responsibility, not about social acceptance. Those are two different things. Social mores delineate what we accept as a society and what we do not. We accept that rich people can selfishly keep most of their money, for example, but we also expect some form of contribution from them back to society. Call it a social compromise between what we allow out of our selfish nature, and what we demand from our recognition of responsibility.
This brings me back to the Terri Schiavo case. (Thought I'd forgotten all about that, didn't you?) The social mores for allowing a person in her situation to choose death are fairly well set, as most people believe that the choice was hers, and she made it. But then there is the question of the method of death. Why starvation, after all? If we are decided that death will be allowed, why do it that way?
The reason lies in our misguided belief that inaction absolves us of responsibility. By removing the feeding tube, we are simply letting nature take its course. That, of course, is wrong. We decided to cause the death. Sure, Terri decided that herself before all this started, but at this moment in time, she's out of the game, and instead, we have the choice to follow her wishes and allow her body to die, or to not follow her wishes and keep her body alive anyway. Since we have the ability to act, we're involved, and therefore responsible. And if our choice is to let her die, then shouldn't that choice be "humane," which is to say quick and clean?
Two factors could mitigate this: first, the possible wishes of the patient. Terri wanted not to be kept alive by a feeding tube, this the courts have resolved; however, would she have objected to an injection to put her body down instead of simply withholding nutrition and hydration and "letting nature take its course"? We don't know. Maybe she would have chosen the latter. The second mitigating possibility is the fact that in her present condition, Terri cannot feel any pain. So even though dehydration and/or starvation appears cruel and unusual to us, it makes no difference to Terri--aside from the possibility that it offends her memory.
It could be, in fact, that doing it "quick and clean" would not be for Terri's sake at all, but rather for ourselves, to make us feel better about it--just the same as people who would let her starve because that would also make us feel better, like we somehow avoided true responsibility for the result.
So perhaps, within the living wills that so many of us are writing these days, we should add the condition that if death is to come, have it come by the manner of our preference. Of course, then we start encroaching on the shores of "mercy killing" and "euthanasia," which are other sticky issues--but false in this case, as allowing someone to die is allowing them to die. Whether we let it happen by starvation or we make it happen by lethal injection is a pure technicality; the end result is exactly the same, as is the measure of our responsibility for our action or inaction. For our choice.
I guess that's what really is eating at me here. Because the person is incapacitated, someone bears the responsibility of dictating the course from here on out. It's easy to say, "I wouldn't want to live like that," and not realize that doctors may not know right away whether "like that" is only the current state or will always be the state. So Terri has been kept alive, and now we want to evaluate whether she would have wanted it and we want to carry out her wishes? But this is not a DNR. If the feeding tube had never been inserted, I might view this a bit differently. But it was, and to withdraw it is to engage in an act that results in another person's death. Last time I checked that was called killing. Murder isn't a word we like to use, but not using it doesn't make it go away. Who is responsible? Who really knows? The doctors, Michael, the judges...? That's one of the sad things: the idea that things can become so twisted that no one knows and sometimes no one cares who was responsible.
Perhaps this was what Terri wanted, but let's call it what it is. At this point it is not "allowing her to die." It is something much different. If this is about the right to refuse medical treatment, then let's start really looking at what happens to a person who receives it and a person who does not. If a person states she doesn't want a feeding tube, she should also be made aware of the risks of refusing it--not just the risk of death but the risk that that death could be a slow and painful process and that staff may or may not recognize the person is in pain. Morphine is a good pain medication, but I don't want to sleep away the last days of my life unless I'm doing it naturally. I want to spend those days enjoying my family's love and attention! So it makes no sense for me, personally, to refuse a feeding tube. I would rather live "like that" than die of starvation and dehydration. "Informed choice" is a term I hear bandied about a lot by people who want the freedom to choose to refuse a treatment. The emphasis is usually on the word choice, but often the choice is not fully informed. It's more comfortable to think about "pulling the plug" as acceptable if we think that the person won't experience pain during that two-week period or if we assume that being doped up is an acceptable state in which to spend that two weeks.
This is supposedly about a person's right to refuse unwanted medical treatment. All that I want to see here is some evidence that there are protections against abuse of the position of guardian for people who are severely disabled--protections that ensure that those who do want it will have access to it. In similar debates in the past, I've been told by proponents of the other side that of course I can accept treatment if I want it, that this isn't about denying me treatment. But I tell you that if a professional sees enough people refuse treatment and believes that there is no hope of "success," he/she may fail to treat the lives of patients who do want that treatment with much respect. From all that I see, it's hard to choose life for a person with severe disabilities--and one of the reasons it's hard is that our culture views severe disability as a synonym for "really dead" and refuses to understand why someone would care to live "like that." If "you" want me to protect your freedom to refuse treatment, will you also defend and protect my right to be informed and to be provided treatment? If I become severely disabled, will you treat me with the same dignity afforded me when I was healthy? Will you care for me as a person whose existence still matters? Please don't assume that I'm already gone--you could very well be saying things with that assumption that hurt me very deeply. Pull my ventilator if I lose the ability to breathe, but don't let me die a prolonged death, and please don't treat me as worthless just because I can't respond as you want me to.
One of the other things I've noticed here is that the "other side" resents the "intrusion of government into private family matters." Yet even the other side admits that Michael "asked the court" to decide what Terri would have wanted. Just how did this "intrusion" come about? If a person doesn't want the government "intruding in private matters" in one area, why and when does it suddenly become all right and even desirable to have the government help accomplish what he/she wants? I don't know how Michael feels about this, but I know that it's inconsistent for people to criticize "the right" for using government powers to accomplish something while they themselves use those same government powers to accomplish *THEIR* agenda. If we don't want government intrusion, then what we're really saying is that we would prefer living in an anarchist society. If that isn't true, then what we are really saying is that we don't want the government forcing someone else's ideas on us, and we need to look closely at whether we are forcing our own ideas on someone else. If we took an honest look at ourselves and our views, we would find that most of us have some kind of agenda, some place where the heart believes that freedoms should be restricted because they allow someone to hurt us personally. How can we meet in the middle?