Carlton Vogt's

Enterprise Ethics

Volume 3 Number 6 February 25, 2005

Life and death

End-of-life issues present thorny ethical questions

Whenever I've told someone I was involved in medical ethics, almost the first words out of their mouths have been: "Oh, you study when to pull the plug and things like that." It takes a lot of explaining to convince them that end-of-life issues, while extremely important really don't define the whole range of medical ethics.

Actually, the dramatic cases that you read about in the media are thankfully rare. Most end-of-life decisions are much more peaceably settled and -- we can only hope -- to the ultimate benefit of all involved.

I started thinking about this these past few weeks because of two cases, one of which has made national headlines for a long time, and the other which was reported more locally. Both illustrate the perplexing issues that can arise when parties seriously disagree.

The first case involves Terri Schiavo, the Florida woman who is seriously brain-damaged and whose husband wants to remove her from her feeding tube, something that would cause her to die. Ms. Schiavo's family objects and the case has been bouncing around in the courts and has become a political football, with all that that entails.

The other case involves a woman in the latter stages of ALS, Lou Gherig's disease. In this case, the hospital wants to remove life support, and the family disagrees. The hospital claims it would be in the woman's best interests. The family, as in the Schaivo case, cites certain behaviors on the part of the patient that they interpret as indicating the patient should be kept alive.

I don't know enough about the important details of either case to offer a useful opinion --and I seem to be alone in this self-assessment, as many other people have very strong opinions. However, some of the issues that arise are common to other such cases, and I'd like to discuss those issues. I can't stress strongly enough that I'm not making a judgment about either of these cases, merely the issues that they have in common with similar situations.

In both of the cases currently in the news, the people who want life-extending treatment to continue place great weight on certain gestures or facial expressions that the patient makes. It's very common that people interpret such gestures and expressions, sometimes involuntary gestures, as indicating either some cognitive ability that they would like the patient to have or as an indication of some desire on the part of the patient.

That's not always the case. The fact that someone's face may "light up," as the common expression goes, when a loved one enters the room isn't necessarily an indication that the patient wants to continue in his or her present state. I've seen cases where people who were resigned to dying still had a positive response to a loved one's appearance. The response doesn't necessarily indicate anything more than an affection between the two people. So, there is a danger in putting too much weight on this.

Often family members will "recall" conversations with the patient, especially in the absence of written directives, indicating that the patient would "never want to live in this condition." Those statements, unless in the context of a serious discussion about advance medical directives, really don't hold a lot of water either. In casual conversation we say a lot of things about which we might feel differently if we thought them out.

For example, I could look at a quadriplegic and say "I'd never want to live like that." And, to a certain extent, that's true. Given my present state of mind, and deciding between living the way I am today and living as a quadriplegic, I would choose not to live that way. However, if I awoke one day and found myself a quadriplegic, I could possibly have a different assessment, and might strongly desire to continue living, even in that condition.

Even when we do think things out, we can't really imagine what we'd want in some future situation, although we think we might. I've had the experience of helping a patient in making advance directives and having him indicate he didn't want to be on a breathing tube. Called to the hospital only days later to find the person in severe respiratory distress, I questioned the patient as to whether he wanted the breathing tube that the doctor was recommending. The patient eagerly agreed to it. The bottom line is that it's impossible to imagine what you'd really want under circumstances you haven't yet experienced.

If patients can change their mind about things that they've thought through clearly only a few days before, it's hard to hold them to thoughts they expressed in casual conversations months or years earlier, and without any reference to the actual conditions in which they might be when the decision needs to be made.

Another problematic area arises with the expectations families have about the value and appropriateness of aggressive medical interventions. You commonly hear such phrases as "Do everything possible for [the patient]" or "We don't want any heroic measures." Both phrases are common and both are relatively meaningless.

In the treatment of any patient, many things are possible. The treatments that are appropriate constitute a far narrower range. Many families have the expectation that aggressive treatment will somehow improve the patient's condition, when in reality it will merely prolong the dying process, and often leaves the patient worse off that he or she would have been had she died sooner. In other words, pushing off mortality increases morbidity, and may do so to a point where the patient survives in a condition that he or she would not have wanted.

On the other hand, "heroic measures" means nothing. What range of treatments does this include? Should doctors not try to resuscitate? In an elderly person with a terminal disease resuscitation might be considered "heroic." In a young, otherwise healthy person, it might have a good probable outcome. Is tube feeding heroic? What about intravenous fluids? Do antibiotics count? Some people could find any of these routine and others could see them as "heroic" measures. So, unless people are very clear about what they want, there could be serious misunderstandings.

The family's faulty expectations can often be overcome with proper education, including an explanation of the burdens of treatment on the patient as compared to the likely outcome. Many times, this just isn't done, especially in cases where doctors feel they would be giving up on the patient and want to continue aggressive treatment as long as possible.

One area that causes the greatest confusion is the mistaken idea that artificial life support, once begin, cannot be removed. This is a very common misunderstanding and one you'll hear repeated by numerous people -- even people who should know better. Many people think that it's permissible to refuse or withhold treatment, but that once the treatment has begun, you're just stuck with it. There is absolutely no ethical difference between not starting a treatment and removing it when it no longer serves the overall best interests of the patient. (I could give a very long defense of this, but don't have room here.)

The term that I used in the above paragraph, "overall best interests of the patient," in a key phrase, mostly because of the word "overall." In the case I mentioned at the beginning of the column, where the hospital felt that terminating treatment would be in the best interests of the patient, I can only assume that the hospital meant the patients "best medical interests." That's a far cry from the "overall best interests."

We all have many interests -- financial, our family, our spiritual beliefs, our health and well-being" and so on. For someone else to isolate any of these and pretend that it constitutes our "best interests," and to make an important decision on it, is ethically indefensible.

As an example, imagine that I am the father of a large family. I've been a prudent provider and have put aside around $1 million to provide for my family. Then, I learn that I have a fatal disease, and that a $1-million procedure will put the disease into remission and extend my life by a year or two, during which time I would be unable to work.

Someone, looking only at the medical aspects of my case, could claim that it would be in my "best interests" to have the procedure. It would extend my life, and medically that's a worthwhile goal. However, when you look at my overall interests, including the financial well-being of my family, it might be a better decision to accept an earlier death and ensure that my family will be financially secure.

Different people would come down on different sides of that, but that difference of opinion only shows the inability of anyone to decide what is in the "overall best interests" of someone else.

Because the Schiavo case involves a feeding tube -- and its possible removal -- it's prudent to make a few comments here. Removing or withholding feeding tubes presents one of the greatest problem areas. The most common objection, especially to removal, is that so doing will cause you to "starve the patient to death," with all the horrors we associate with that.

It's an appeal to emotion pure and simple, and often very effective. However, if the seriously ill stop eating, it's not quite the same as if you and I are deprived of food when we're craving it. Many seriously ill people lose their appetites and find eating more distressing than not. In fact, part of the dying process, at least before we turned to aggressive life-prolonging techniques, was that the patient would go into a state of decline, then stop taking in food, and would eventually die. It wasn't a process of violent "starvation," but rather just part of the process of dying. The possibility even exists that by forcing food into people, when there's no hope that they will recover, we could be harming them.

The bottom line is that deciding for others in end-of-life issues is tremendously difficult. At the very best, we can only hope we got it right. The situations that make the news and the talk shows -- and the ones that attract opportunistic politicians trying to cynically cash in on the publicity -- are true tragedies.

Often, they are just showcases for pre-existing family discord and sometimes allow family members to play out their antagonisms, using the patient as an excuse. Sometimes, we even see guilt mechanisms come into play. The son, daughter, or sibling of the patient, after years of either neglect or estrangement, suddenly wants to show his or her attachment or concern and doesn't want to let go, and so presses for aggressive and inappropriate life-prolonging treatment.

The cautionary tale in all of this is for everyone to have clear and unambiguous (or as unambiguous as possible) advance directives. These should be written down, and the people named as proxy decision-makers should be involved in the advance decisions, so that they're perfectly clear on what to do. At the very least, they should be informed that they are the decision-maker. It shouldn't come as a surprise -- and that comes from personal experience.

© Copyright 2005 Carlton Vogt