menuPaper: Ex-humans how to face them squarely?
04 November, 2003
We are gathered here in an effort to trace fictional initiatives which might have an impact on debates about issues in medical ethics.
As some of you may remember, during our last meeting in Vienna I argued against the feasibilty of our enterprise by pointing at the fact that so far it has proved impossible to point at any fictional initiative that had a modifying effect on medical practice.
Today I would like to turn things round a little by pointing at an ethical issue first and presaging a fictional outburst second, if there isn’t already one around at this very moment.
First of all the issue, which I will put to you in a rather blunt fashion:
are patients in the last stages of dementia still human beings?
This question is never seriously raised in public debates.
I can assure you I would be the last to do so for reasons of wanting to hold on to my job as a geriatrician. But we´re in Sardinia now and nobody can hear us, so here goes.
Our personality, our ego, the contents of the this-is-me bag, are gradually amassed in life, and, as we shall see, sometimes they are gradually spilled as well. In the last case it is very difficult to say just when the bag is emprty.
Let me show you two instances of faulty ego-construction.
First an event I noted down years ago. My son was 2 years old and after I cleaned the table with a dish cloth he started gaping at his reflection in the wet surface. Fascinated he climbed down quickly from his chair to check underneath where this face was.
It was as if in the business of ego-construction here a balcony was fastened to the front that would stick too far out and thus didn’t hold.
The second instant. I am standing in an elevator with Mrs. W. She is an Alzheimer-patient and as we ride down she carefully studies her reflection in the mirror. Initially she looks puzzled and says: “Haven’t seen her a long time,” then her face brightens in a smile while she says to me: “It’s me mum!”
These two events cover only a fraction of the huge construction of a personal “I”, namely the section categorized as “reflections of own face in smooth surfaces”, there being a telling difference between the child on the way up and the woman on the way down.
Most of us know what a growing “I” turns into, but the final stages of a dwindling “I“ are not universally acknowledged for what they really are.
In a televison interview a geriatrician, colleague of mine, was once asked: why don’t we kill demented patients in their last stages, the way we would kill say a dog under similar conditions? Don’t we become like dogs (this was not meant as a scoffing description) when we are so far gone mentally?
The doctor answered indignantly: “I think your comparison deeply unworthy.”
But it wasn’t meant that way. The question was: why is it that dogs get away so easily at the end, while humans are saddled with such a horrible last phase, in some cases of Alzheimer?
Ethicists will find this question comparatively easy from an academic point of view.
But in my practice I am often confronted by angry and desperate relatives who will point at the princely way of animal dying as opposed to the beggarly fashion in which we do away with our nearest and dearest.
You mustn’t think that this has anything to do with impatience to get at the inheritance, because I am talking about people who will soon be dead anyway. So the relatives will come into their millions regardless of what is or is not done to the dying person.
I usually wriggle out of such conversations by exclaiming indignantly: “But your mother is not a dog or a cat!” and this nearly always works.
But saying “how DARE you ask such a question!” is of course not an answer.
I think the most important reason why we do not kill, or if you prefer the veterinarian’s idiom, put to sleep, our dying fellow-humans at the end of their journey is the impossiblillity of drawing sharp boundaries.
This is not always the case, because there are situations in which we do say about a living human body: this is not a person, I am thinking of patients in a coma, who after 6 months are considered to have traveled into a subhuman region of
existence fron whch there is no return. Hence the relative ease with which we un-plug them to let them die. Even in these cases outright killing is rarely resorted to as far as I know. That may be a hypocritical reluctance, but it is a very strong one, precisely because we are dealing here with ex-humans so to speak, a concept that it is horrifying to contemplate.
It is almost impossible to indicate precisely when a human being ceases to be a person, and the same impossiblillity is encountered at the beginning of life. Of not-yet humans, human embryos, we now say that they can be thrown away until they are 12 weeks old, when roughly speaking all the organs are in place or started up in rudimentary fashion.
“During the third month,” I am quoting a textbook, “the young fetus, now about an inch in length, clearly resembles a human being, although the head is disproportionally large. The previous protrusion of much of the intestine into the umbilical cord is now reduced through the return of its loops into the abdomen. The ears rise to eye level and the eyelids fuse shut. Nails begin forming and ossification centres appear in the future bones and the sex of the external genitalia becomes recognizable.”
This bigheaded snail of 12 weeks gestation we have decided is a human being. “Made gentlemen by act of Congress,” as Burroughs asserted of some protagonists in his Naked Lunch, adding: “nothing else could do that for them.”
There is a pertinent question nagging at our minds about the essential difference between a baby and a demented person in the last stages. In both cases their response to the world is neurologically primitive if I may so put it. But in the Alzheimer case this primitivism is doomed to dwindle into issueless misery while the baby’s neurology is slowly gearing up to break into the marvelous array of symphonies called a mind at work.
There’s a lot of literature about Alzheimer at present, but as far as I know there is no serious treatment yet of this question in fiction: when is it reasonable to regard an Alzheimerpatient as an ex-human?
The ontological blurring between human and animal nature suggested here is a well accepted way of arguing for animal rights, but then in the opposite direction as it were.
The animal rights movement insists that animals in their capacity for suffering are more human than we think and should on this count be treated with the same caution as humans.
I do maintain that, for good or ill, WE are the best, in the sense of the most thorough, sufferers on earth, but animals come close to our level.
Animal rights thinkers also point at the intellectual psychological and emotional status of some severely debillitated humans, beings of whom it can be reasonably stated that their mental alertness and hence capacity for suffering is far below that of certain animals.
If human rights are extended to them then certainly certain classes of animals deserve the same treatment.
Our thoughts may travel along two paths here and the thrilling or agonizing question is: where do these paths cross?
On the way down, towards animals, one might say: in certain final cases of Alzheimer what is left is no more than an animal, I am speaking ontologically, this is not meant to be a judgmental proposition.
On the way up, towards humans, one might say: in certain cases of animal existence their capacity for suffering equals that of humans and therefore they desrve the same treatment.
To return to my intial question: are patients in the last stages of dementia still human beings?
Is dementia in its final stages a mode of being which turns us into ex-humans? And what rights do we accord to beings in this phase? Does the animal rights movement help us here?
It is quite striking that in a certain context people do think quite coolly about this issue, I mean the drawing up of a so-called advance directive also described as a living will. In these directives people put in bluntness or in innocence the impossible injunction: when I am far gone in dementia I want to be killed.
The striking thing is that people do not shirk from thinking about this issue, but they do not envisage how these thoughts are to be put into practice.
Recently a Dutch doctor was accused of murder and sentenced accordingly, following a case in which he killed a dying woman who was comatose. He justified his action as an instant of palliative care.
I think he was completely wrong in his action and in his thinking about it, but we all feel that “murder” is not the appropriate term for what he did. The judges explicitly acknowledged this in their sentence, but stated that “murder” is what they would have to call it for want of a better term.
The latest findings of Van de Wal and Maas in their extensive survey of Dutch clinical practice around dying patients shows that 900 patients are killed each year by their doctors without an explicit request. A number of these cases are newborn children with severe defects, but I believe that is only a minority.
Following these events (the doctor sentenced for murder and the Van de Wal Maas report), the Dutch Royal Society of Medicine has uttered its concern about the necessity of a concept that would be situatued between euthanasia i.e. death on request on the one hand, and outright murder on the other.
I do believe then that something is rumbling underneath the surface here which will soon burst onto the scene in the shape of a movie, a novel, a tv drama or an opera if you like, in which this theme is taken out into the open and given a good airing.
To predict the precise nature of this utterance is tantamount to creating it, so I cannot supply you with details.
So, we’ll just have to wait and see.
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