Autonomy

Recently, a person came on our service who chose to die.

I know that this could sound like a Big Issue, what with the Physician Assisted Suicide statute in Oregon receiving continual scrutiny, and in general the association in the public mind of the words "choosing to die" with the word "suicide," with all of the attendant stigmas. But this instance was different. All this person had to do was decide for himself (I'll use the male pronoun here generically) that he no longer wanted to pursue the medical treatments that had been keeping him alive.

Sometimes, being kept alive is far from the same as simply living.

So, he did. He came to this place in himself, in his days, when the realization of this difference had dawned, and then, after awhile, before a "day" in the eyes of God had passed, he decided not to be kept alive any longer. Thus, he came onto our hospice service, by his own choice, to die. And now he passes his time with us in God's dusk.

This does not mean this was an easy choice on his part, nor one that was made lightly, certainly not one that was made quickly. It was, at heart, just a momentous choice. It was, we could say, an ultimate exercise of human autonomy.

Autonomy is a high value in hospice. We extol its virtue; we do, we say, what we can in order to protect and promote our patients' autonomy; and we have even devised a survey tool to gather information from out patients' survivors about whether or not we have succeeded in our aim. To a great extent, an autonomous death is a "good" death to us.

In this way, perhaps, we are a little out of step with our culture, a little behind the times. Autonomy as an ethical value is so yesterday-- a "modern" concept in a "post-modern" world. If one were to articulate a post-modern ethic for end of life care, it would have as one of its cornerstones pragmatism; and as another, relativism; and as a third, pluralism; and as a fourth, perhaps a recognition that there are no over-arching principles to guide our decisions. Certainly the idealism, and norms, and faith in the individual to do what is fitting for himself, and thus the support of autonomy, would not in themselves enter into the picture.

Thus it is that our patient comes, in his now waning days, to embody our values, and at the same time to highlight both why we continue to hold them, and how difficult they are to uphold.

For instance, this person has his own spiritual beliefs, well-developed for a person his age and life experience. I would say they do not fit easily into the concepts of any particular religion. Yet, in these his final days, he finds himself in the hands of friends and neighbors, most of whom are driven by their own religious convictions to come forward to help him, but at the same time, who also feel quite content in foisting their religion upon our patient. It is not as if our patient is unfamiliar with this religion; it is, more, in his vulnerable state, he can scarcely afford to jeapardize the support and company he is receiving from these well-meaning but passive aggressive and possibly religiously abusive people.

Ah, the power and limits of autonomy: he may have found it in himself to choose to die, but he could not find it in himself to be able to protect himself from those who mean well, but do not know how to good without doing "unto...". These benevolent persons have little sense that they are not, in fact upholding this person's autonomy, for they are driven by a still more ancient code of ethics, that classical sense that tells them they are to be moral agents promulgating a moral order!

It is apparent to me that our patient has, in choosing to cease treatment, in effect flung himself on the mercies of the conflicting ethics of our time. Thus everyone involved in his care is doing good by him, in their own minds anyway. The real question is, is Good being done?

I feel for him. I told him I admire the courage it took him to say, "enough is enough." But this is the modern person I am.

I feel sad that he has, in the course of his life, not developed a sufficient "community" around himself, so that here, at his last, he has to place himself in the hands of strangers, either from hospice, or his neighborhood (his neighbors, to be clear, know him; they just don't know how to know his values or maybe just how to respect his values, and thus are "strangers" to him), or the people at the skilled facility where he will die. But this is the post-modern person I am.

And, I feel a kind of indentification with him: I am helpless as he is helpless. I watch his slow descent in the Abyss. I know he would want that descent to be more rapid, but it must be only what it is. Each of us die only at our own pace. More, I realize as he goes, and as I do what I can to witness his going, that there is Something that transcends any of our ethics: a Light that shines in each of us only in the way It does. And when It is extinguished, the world is in that way, darker.