December 15, 1994

I read your paper about the Outcomes of End Stage Renal Disease last night.
It seemes to me to be a sign of substantial professional success
that such theoretical considerations should be solicited and accepted from you.

There are two partially unresolved issues which are both
of theoretical and practical interest.

The first issue is the difficulty if not indeed the impossibility
of specifying utilities as they determine choices. 
It is possible to impose a common set of utilities
on a group of individuals. Money as the common denominator
of social exchange is an obvious example. There is some truth
to the banal platitude that money cannot buy happiness.
Clearly an individual's happiness (Seligkeit is a better word,
which has no equivalent in English.) is not a function,
linear or otherwise, of his net worth. Steve Pauker's claim
that all utilities are susceptible to calculation is an echo
of a positivism with which most people who take the matter seriously
have long since become bored.  It is a useful excercise to trace
the thread of utilitarian thought from Jeremy Bentham, via John
Stuart Mill, Auguste Compte, the Vienna Circle, Bertrand Russell,
Wittgenstein, to von Neumann and Morgenstern. Logical positivism
is a successful foundation of computing algorithms,
but as a substitute religion, it fails.

To be very specific, if I were afflicted with ESRD, I would ten times
over choose a dialysis unit where my physician obviously liked and
respected me, and where the nurse was a kind and gentle girl with whom
I could secretly fall in love, over a technically superior installation 
which might double my lifespan, but in which I felt like a cipher
or a trapped animal. The fact is, I have had an ophthalmology practice
largely constituted of patients who express analogous idiosyncracies.

The problem with outcomes research, as I see it,
is that it is inherently impermeable to the subjective values
that inhere in any therapeutic relationship.
To the extent that outcomes research becomes controlling of policy,
it will stifle the flowering of subjective interpersonal relationships,
of experiences which cannot be predicted, cannot be measured,
and therefore cannot be planned or controlled,
but must, if they are to flourish at all,
be given the opportunity to germinate and grow spontaneously.

If outcomes research is nonetheless desirable, perhaps even necessary,
this is the case because the clinical landscape has become an existential
disaster area, so mindless, so dispassionate, so mechanical, that 
outcomes analysis could hardly make it more hostile to meaningful
experience. Perhaps outcomes analysis can serve the useful purpose
of demonstrating the bankruptcy of conventional mechanical medical
practice, clearing away the debris of tradition and making room
for the growth of something better.

The second issue is the difficulty, if not indeed impossibility,
of comprehending the subjective experience of our patients.
To understand it requires an imaginative mind and a sympathetic ear.
To communicate it, requires the creative skills of a poet or a novelist;
and even then it is only a pale image of the reality which is
conveyed.

At best the information yielded by the questionnaire
is in rough correspondence to the experience of the patient,
a recognizable albeit distorted image. At worst it is
a misleading and deceptive fiction, which, if acted upon
is most likely productive of harm.

In any event, it seems to me quite feasible, and in fact,
desirable to control the validity of the information obtained
and the inferences drawn from it, by devising different probes
of the patient's experience, by exploring the patients social
and psychological status with more than one, and perhaps several
probes, comparing the results, both to gage the validity of each
and to gain a more reliable composite of the object of our study.

             ===========================

==> What follows is an initial formulation of my ideas
on outcomes research. I am dissatisfied with what I have written,
but am unable to improve upon it right now. So read it,
if you are so inclined, but sceptically, and take no offense.

Obviously, the topic of outcomes research is of great interest.
On first consideration, it might appear simple;
but the more I think about it, the more complex it seems to me,
until the perceived complexity produces neuronal gridlock
and paralyses further thought, at least in my case.
I mention this predicament, because you should be wary
of my ideas, lest they affect you similarly.

Let me begin with a rather abstract and unrealistic set
of considerations, which are largely irrelevant to your work
because they imply a patient-physician relationship
such as is impossible in the contemporary medical world.
Implicit in the notion of outcomes is the measurement
of the consequences of medical treatment on a scale of quality.
One outcome is deemed more desirable than another.
Yet it is not always clear which of diverse outcomes we should desire.
The implicit assumption that the relative value of different
outcomes should be self-evident, trivializes our experience.
In any case, the choice of outcomes might be considered
in the light of St. Paul's complaint in his letter to the Romans (8,26):
"Likewise the spirit also helpeth our infirmities:
for we know not what we should pray for as we ought."
"DEsselbigen gleichen auch der Geist hilfft vnser schwachheit auff.
Denn wir wissen nicht / was wir beten sollen / wie sichs gebuert"
That is the substantive dilemma. We really cannot say dogmatically
what is good for us, whether, for example, it is preferable
to die suddenly of coronary occlusion at age 70,
or to live in relatively good health for another two years,
before succumbing to a stoke or to some other disease which
leaves one demented or otherwise severely incapacitated
for the ensuing decade.
There is, I think, profound wisdom in the pious declaration,
"Gottes Zeit ist die allerbeste Zeit." When we indulge
in a calculus that purports to improve upon "Gottes Zeit"
we do so at our own peril. I know of nothing that will mitigate
the suffering of illness and of dying as effectively as being
convinced of its subjective necessity, the knowledge that however
contingent on accident or circumstance, ones life,
ones illness and ones death are each of them uniquely ones own.
One must be cautious not to disrupt the individuals acquiescence
to his fate. Not that in themselves the pharmacologic or surgical
interventions necessarily interfere with the individuals acceptance
of his illness; but the circumstance that administrative deliberation
and calculation or the lack thereof should control the interventions
and their consequences is disquieting, one would which ones life
and death subject to a transcendental protocol, rather than to
the regulations of the Health Care Financing Administration.
The terror of capital punishment is not in the dying, but
in the human intervention that causes it.
The death which is brought about by the deliberate acts
of judge, jury and executioner derives its terror
from the circumstance that the natural process of dying
has been calculated by hostile and ignorant human beings.
I see a macabre analogy between the bureaucratic maintenance
and the bureaucratic destruction of life.
A life penalty is, in a different perspective, a death penalty.
"Der See kann sich, der Landvogt nicht erbarmen.
 Doch besser ist's ihr fallt in Gottes Hand,
 Als in der Menschen..."
It is just possible that the administrative imposition
of a "life penalty" may prove unexpectedly terrifying
in a similar manner and may actually impede the physician
from fulfilling his most important obligation to his patient,
which is not to procure recovery from all illness
and arrange for the indefinite postponement of death,
but to help the patient integrate his illness and his death
into his own existence.

It would be erroneous to infer that the fatalistic - or religious -
acceptance of illness and death will obviate our conscientious concern
for the accuracy of the diagnosis and the effectiveness of the treatment.
To my mind, at least, that does not follow in the least.
What does follow, and what I have observed in my own practice,
is that statistical rationalizations and the protocols that
they engender do justice neither to the objective
nor to the subjective particularity of this patient's illness.

You should not infer from the foregoing analysis, that I consider
outcomes research unnecessary, useless, or even harmful. Quite
the contrary. My comments were predicated on the presence of a
physician passionately involved with his patient's disease.
I know that such physicians are so rare as to make reliance
on them, even for the sake of argument, chimerical, and that,
to the extent that they do exist, it is virtually impossible for them,
in the contemporary institutional environment in which medicine,
and especially renal dialysis, is practiced, to fulfill their functions.
Your investigations apply to clinical situations in which
the patient is bereft of all but the most perfunctory
relationship to his physician, and inasmuch as he is thus
abandoned to the vagaries of technology,
it is high time that someone should consider
what in fact is being done to him.

The procedural dilemma is reflected in Rilkes
"Das was geschieht, hat einen solchen Vorsprung vor unserem Meinen,
dasz wir's nie einholen, und nie erfahren, wie es wirklich aussah."
That sentiment clearly expresses
some sort of uncertainty principle of psychology,
which makes it impossible for us to ascertain
the inner experience of the other person.
As I once wrote (Die Andere, Chapter 7):

                                      Der Mann aber schien seine
       Gedanken gelesen zu haben. "In ihrem Fach, sollte ich
       meinen, gilt es doch als eine Binsenwahrheit, dasz das Aeuszere
       nicht das Innere ist." sagte er. "Aber man kann das Innere
       doch nur ueber das Aeuszere erkennen," protestierte Doehring.
       "Man kann das Innere ueberhaupt nicht kennen," sagte der
       Mensch in der SS Uniform. "Im uebrigen trage ich ja diese
       Uniform nicht zur Schau, ich trage sie nur um mich zu
       erinnern wer ich bin." "Und wer sind Sie denn eigentlich?"
       fragte Doehring, erleichtert dasz der Mann das Thema der
       eigenen Identit{t selbst angeschnitten hatte, und dankbar,
       dasz er ihn noch nicht angezeigt hatte. "Ich bin ein Mensch,"
       sagte der Mann. Doehring wartete, aber der Mann sagte nichts
       weiter.

One does not abandon the attempt to understand the experience of others.
but if one articulates this psychological uncertainty principle, one
is more likely to discover techniques to mitigate it or to cirumvent
it in part. More about that later.

Turning again to the substantive question, of what is the "outcome"
that the patient should desire and toward which the physician should aim,
both Plato and Aristotle would have objected to our contemporary
democratic egalitarian consumerist notion that the patient himself
knows what is best for him. Knowing what is best is a cognitive skill
which Plato explicitly reserves for the physician. Indeed, for Plato
the physician's knowledge about what is necessary becomes a paradigm
for all ethics and all epistemology.

But I have gotten ahead of myself.
I need to have another look at the questionnaires which you use.
It is important to what extent the questionnaires
elicit subjective criteria of well-being
and to what extent the criteria elicted are objective.
Then one should consider once more the ways in which
objective measurements can shed light on subjective circumstances.

It seems to me that the insistence on objective criteria of therapeutic
success, the length of life, the freedom from pain, the ability to
perform mental or physical work, is incompatible with our cultural
and religious heritage. It was Job who said: The Lord has given,
the Lord has taken, blessed be the name of the Lord. ( Der Herr
hats gegeben, der Herr hats genommen, gesegnet sei der Name des Herrn.)
I interpret this text as an affirmation by Job of his own emotional
(spiritual) strength; this God who had given and who has taken
is the God within, is an integral part of Job as believer.
It is the meaning of Job's faith, that God is with him,
is part of and inseparable from him, and this inseparability
is the source of Job's strength. Luther said similarly:
Nehmen sie uns den Leib, Gut, Ehr Kind und Weib,
Lasz fahren dahin. Sie haben kein Gewinn, das Reich musz unser bleiben.
To these contexts outcomes research is irrelevant.