Session Two: Time--Counting the Moments/
Making Moments Count

Lawrence Schneiderman, M.D.
Bioethicist, University of California, San Diego

Earlier in my career--and I'm no longer a primary care internist, I do ethics consultations exclusively--I used to make a point of visiting where my patients lived, so I would get a sense of what their life was like. And that meant I occasionally would have to go to nursing homes. What was striking about these assisted living and nursing homes, I'm sure you see it, is how timeless they are. They make sure that there are always low maintenance shrubs, that the swimming pool is full of chlorine so it's perfect, that the building is clean, impeccable. There is no sense of cycles or seasons. The ideal is to be clean and permanent, hygienic and concrete. There is no mud.

Because we only have a brief period of time, I'm going to speak to two topics, which I think help us look at this matter of time. The first is the type of persistent vegetative state, which also moves to permanent vegetative state; the other, to which I will turn briefly, is dying with and without modern technology.

Now, just a brief lesson in neurology. You have in your brain the cerebral cortex, which is actually a very thin structure on the outer surface of your cerebral hemispheres. Four to six minutes of anoxia, lack of oxygen, destroys that completely. The rest of your brain, particularly the brain stem, can survive for fifteen or twenty minutes without oxygen. That disparity accounts for what we now see in as many as 30,000 to 40,000 people being kept alive in permanent unconsciousness. Usually the cause is failed CPR, or occasionally a stroke or a motor vehicle accident of some sort. What happens is that that part of the brain, the cerebral cortex, which is us, our personality, who we are, how we think--our capacity to experience, see, hear, think, emote--that may be permanently destroyed. Whereas the rest of us, the brain stem, which gives us the ability to breath, digest, all the organ functions, that could be kept alive, and in many cases has been kept going for decades. And so that has given us this condition which was first diagnosed in 1972. It's really interesting, that that's a very new disease as far as medicine is concerned, and, in fact, it's an iatrogenic [doctor-created] disease. Vegetative state is the condition, as we call it, but persistent or permanent is what we do to keep that condition going. So in a sense, that's a very important notion.

Now, all of us who do ethics consultations, have had the experience, and I've had several, where families have insisted that their loved one be kept alive in a permanent vegetative state, permanently unconscious. And this is a clinical diagnosis. If someone, for example, has persistent vegetative state, where their eyes may open and close and they have all sorts of reflex capacities, that's because that part of the brain stem, the reticular activating system that's responsible for sleep/wake may be temporarily impaired, but then recover. And so they're unconscious. Their eyes may open, and they sleep, but they're completely unaware. Families will sometimes demand that physicians keep such patients alive--and it's very simple, a feeding tube and good nursing care will do it. There's nothing more that has to be done, if that's the condition we're talking about.

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Now, I've either been involved in or heard of cases where families have demanded that this be done, and the patient has been kept alive for eighteen months although there is no realistic chance that the patient will ever recover. I have to admit that today, hearing about embalming made me think of the parallel, that this was a family that needed to see that person in an embalmed state. It's truly nothing less than that, if you consider the person, the capacity of the person to interact.

I've also heard this described as a tragedy: "Oh," one says, "the person who had this happen to him, it's a tragedy." And I have to say that I'm with Martha Nussbaum on this, that this is not a tragedy: this is hubris, this is a failure to recognize our mortal limits. I refer here to a very rich and perceptive essay, "Transcending Humanity," where Nussbaum talks about Odysseus, whom Calypso was trying to tempt to stay with her. Calypso says, "You stay with me and you will have immortality and ageless love." What could be better? But Odysseus, even knowing that his waiting wife Penelope is far beneath the beautiful goddess in form and stature--and I'm quoting Nussbaum:

opts to continue his voyage, thus choosing not only risk and difficulty, but the certainty of death. And not only death, but the virtual certainty that he will at some time lose what he most deeply loves, or will cause by his own death great grief to her. He is choosing the whole human package, mortal life, dangerous voyage, imperfect mortal aging woman. He is choosing quite simply what is his, his own history.

What I think we call a tragedy is closer to farce. That sounds very brutal, but I think we fail to recognize that tragedy requires us to understand that death comes, death is what ends us because we are mortal. And our unwillingness to accept this comes close to the comic notion of doing too much or seeking to go beyond our powers and hence making fools of ourselves. This is, in fact, the definition of comedy. I think that permanent vegetative state really exemplifies the failure to understand our mortality.

Now, in ethical terms, there is also the argument that keeping patients alive in this condition may be harmful, but the argument is usually made by those who say, "If that's what people want, if that's their values, we should honor it." And after all, if someone is permanently unconscious, they're not suffering, so you can't say we're doing harm. How do you know, anyway? What do we know about the patient who is permanently unconscious? Only that he or she is isolated from any form of communication, as though exiled or banished from society, a condition once regarded as punishment equal to if not worse than death because it is, in effect, dehumanizing. From the earliest known time, human beings have functioned as organic components within a community connected to family, friends, work, rituals, customs, duties and entertainments. In early Christian society, banishment served, along with burning at the stake, as punishment for heresy, thus apparently being deemed equal to the most painful death.

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Finally, I want to make a few specific points about dying with or without modern technology. First of all, some of you, I'm sure, are aware that today about 80% of people die in a health care setting of some sort, only about 20% die at home. So those of us who are in health care have a lot to say about how people die, and if we pursue certain measures, they're going to die one way. If we at some point recognize the importance of palliative care, comfort care, they'll die another way.

There has been a great debate about whether to withdraw artificial nutrition and hydration. And I still run into physicians and families who say, "Oh, we can't let them starve to death. Oh, we can't let them die of thirst." Fortunately, we've had Hospice, which has pointed out that terminally ill patients, patients who stop eating and no longer seem to want to drink except perhaps sips of water, die more comfortably than patients on whom we force artificial nutrition and hydration--we increase respiratory secretion, we increase the risk of nausea, vomiting, aspiration, pneumonia; we increase the amount of incontinent urine that they produce. So, in a sense, we influence the time of dying just by one simple measure of not force feeding.

Now, this actually has important metabolic consequences, as it turns out. If you allow patients to die without being given glucose or other sources of carbohydrates, they then begin to use their protein and fat as energy sources. This creates ketones, a chemical in the body that seems to have an analgesic effect. More than that, metabolic acidosis seems to have a euphoric effect. A professor of English, a friend of mine, called me one day, and said that her mother was dying of cancer in a nursing home, and there was a big fight in the family about whether or not to put a feeding tube in her in her last week so that she would live longer. In talking with my friend, I strongly urged against putting in what we call a peg tube, a subcutaneous feeding tube. About a month or so later, she called me and said she was so grateful. Her mother died, she said, an ecstatic death. She had this wonderful kind of peaceful, serene vision that accompanied her dying days. And it occurred to me that that's what we have been depriving modern patients of, that possibility, by insisting on replenishing their food and fluids.

What about withdrawing a ventilator? Some of you may say, "Well, if a patient is ventilator-dependent, in other words, requires artificial respiratory health, what do we do, do we keep that person on it?" Well, today, if it's no longer beneficial to the patient, or if the patient refuses it, it's good medical practice to withdraw it with plenty of morphine to make sure that the patient is comfortable. This is not euthanasia. It simply makes the death shorter and more tolerable.

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Another treatment that I see which very often confuses effect with benefit--I'm very conscious of the fact that we can do so many different things, which we call effects in medicine, and sometimes we fail to recognize those effects that don't have a benefit--is giving drugs to raise blood pressure. When patients die, their blood pressure goes down. How many times have I seen doctors starting to infuse what we call vasopressors to keep the blood pressure up while the patient dies. If the patient is unconscious it serves no purpose. The only reason to do this in the terminally ill patient is if raising the blood pressure means that the patient then becomes conscious because of blood supply to the brain, and can enjoy the last few days of life or moments of life. Too many times I've seen the procedure done, prolonging the dying process, with no benefit to the patient. So there, too, we do manipulate time.

One other point. When we decide that the patient will no longer survive, we should get rid of all the impediments to looking at this person whole and intact. So take her off the monitors, take her off the IVs. Create the situation where the family will not be looking up at the cardiac monitor, rather than looking at mom. If the mother wouldn't have wanted to go with all the monitors, that should not be the image that this family should take away.

In conclusion, there's a wonderful passage from Willa Cather's Death Comes for the Archbishop, which I just would like to read to you. And keep in mind Michael Witmore's comments about the black box because that, too, struck me as a very interesting parallel. In the book, Cather writes,

In those days, even in European countries, death had a solemn social importance. It was not regarded as a moment when certain bodily organs ceased to function, but as a dramatic climatic climax, a moment when the soul made its entrance into the next world, passing in full consciousness through a lowly door to an unimaginable scene. Among the watchers there is always the hope that the dying man might reveal something of what he alone could see, that his countenance if not his lips would speak, and on his features would fall some light or shadow from beyond. The last words of great men, Napoleon, Lord Byron, were still printed in gift books, and the dying murmurs of every common man and woman were listened for and treasured by their neighbors and kinsfolk. These sayings no matter how unimportant were given oracular significance and pondered by those who must one day go to the same road.

It's clear how differently we feel about this. Today, death is regarded as the enemy. We are mostly considered as dying in isolation. Those who were hoping for miracles also feel death as a betrayal. To die is perceived not as something inevitable, a moment to be treasured, but as an avoidable mishap. "If only the person had the strength of character to hang on a little longer, until the inevitable miracle drug came along." Death in this secular age is rarely promoted as an opportunity, rather than as a defeat.

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