Richard
McCormick, "Some Neglected Aspects of Moral Responsibility for
Health," reprinted in How Brave a New World?
The public is increasingly becoming a partner in
discussions of health and healthcare delivery. That is as it should be. But too
often these discussions confine themselves to the neon problems of abortion,
euthanasia, suicide, genetic screening and manipulation, allocation of scarce
resources, etc., as if an answer to these very difficult problems exhausted the
notion of moral responsibility for health. We are not likely to neglect or to
forget such problems.
Furthermore,
there are other general aspects of the question of responsibility for health
that we are not likely to neglect. One can list them quickly and easily, as one
rises with the late Mayor Richard Daley and his beloved Chicago to "higher
and higher platitudes." Yes, there is an obligation to promote health.
Yes, there is an obligation to keep it. No, there is not-at least in Catholic
Christian tradition-a right to suicide, since every right is concerned with a
good, whether instrumental or consummatory. Yes, revelation does have something
to say about the moral responsibility for health. And so on. These are things
we are not likely to neglect because very little effort was expended in
learning them and because what was learned was minimal, even if important. They
are so general in character that we know them down oar pulses as human
beings-even though they contain the seeds of some serious moral disputes, as,
for example, in the case of euthanasia in some instances.
In
what follows I should like to outline some neglected aspects of responsibility
for health. Because my purpose is provocative and suggestive, I shall paint
with a broad brush. In doing so I shall spare the reader the extensive footnote
documentation that could be adduced to support the claims made or extend the
probes initiated.
I
In thinking about
responsibility for health, one of the first things we are likely to forget is
that "health" is both too broad and too narrow a term to convey our
over-all responsibilities. Health is a notion defined by its relation to
disease. But the term "disease" has had an interesting evolutionary
history and therefore so has health.1 "Disease" first
meant an identifiable degenerative or inflammatory process which, if unchecked,
would lead to serious organic illness and sometimes eventually to death. The
next stage of development was statistical-at least some diseases being
identified by deviation from a supposed statistical norm. Thus we referred to hyperthyroidism
or hypothyroidism, hypercholesterolemia, hypoglycemia,
etc. One was said to be unhealthy, to have a disease if he or she were hypo or
hyper anything, not in the sense of an existing, tangible degenerative
process, but in the sense that the individual was more than others likely to
suffer some untoward event, what my colleague Dr. André Hellegers is fond of
calling "hyperuntowardeventitis."
1These reflections I owe to Dr. André
Hellegers (Charles Sumner Bacon Lecture).
The
third notion of disease is inability to function in society. For instance,
there is a good deal of surgery being performed to enlarge breasts, to shrink
buttocks, to remove wrinkles-in brief, to conform to someone's notion of the
attractive and eventually of the tolerable. We live in a society that cannot
tolerate aging. At some point, then, this question arises: Who is the patient
here, who is sick-the individual, or society? I mean, of course, that this
broad understanding of "health" can too easily reflect a sickness of
society, in its judgments about the meaning of the person. In our time and in
some societies, people are hospitalized because of nonconformity. That suggests
that the notion of "health" is becoming increasingly nonsomatized and
getting out of control.
The
final stage of development is the definition of health popularized by the World
Health Organization. Health is a "state of complete physical, mental, and
social well-being, not simply the absence of illness and disease." This
description of health was adopted in the Doe v. Bolton abortion decision
of the U. S. Supreme Court. The Court stated that the "medical judgment
may be exercised in the light of all factors-physical, emotional,
psychological, familial, and the woman's age-relevant to the well-being of the
patient."2 Following this notion of health, the quite
preposterous situation could arise where a person's sense of well-being is
threatened by the size of his or her car. The appropriate medical judgment
would be a prescription for a Chrysler Imperial to replace one's Dodge Dart.
Through
the expansion of the notions of health and disease, contemporary medicine is
increasingly treating the desires of people in a move toward a discomfortless
society. Desires, of course, are notoriously the product of many suspect
sources. What we can easily forget, then, is that under this burgeoning notion
of health and disease, "moral responsibility for health" can too
easily lead to an endorsement of a notion of the person that is highly distorted
and at some point radically un-Christian.
On
the other hand, the term "health" is far too narrow. If we define and
delimit our moral responsibilities under such narrowing, we very easily forget
that our responsibilities extend to the living even in their dying. A narrow
notion of health as delimiting responsibility can lead us to forget that one of
our most urgent moral tasks is care and comfort of the dying. Particular
temptations of a highly technological health-care system are to abandon the
dying, to approach our responsibilities by narrowing the options to pulling the
plug or not pulling the plug. "Orders not to resuscitate" are too
often carried out as if they were orders to do nothing—not even care.
2Doe v. Bolton, 410 U.S. 179,192(1973).
II
The
second thing we can easily forget is that health problems are traceable to and
root in cultural priorities and the structures that embody these priorities. It
is popular now, perhaps even faddish to speak of "sinful structures"
in society. What is meant here in a general way, is that enslavement of persons
occurs through structures.
To understand this, we must distinguish two types of
structures. The first I refer to as "operational structures." These
are zoning laws, welfare systems, tax systems, health-delivery systems,
international monetary systems, etc.--the concrete organizational patterns that
make up our environment. Since our environment profoundly shapes our lives,
these structures can be either liberating or enslaving. They are very often
enslaving-and that brings me to the second type of structure, "ideological
structures." An ideological structure is nothing more nor less than a
corporately adopted priority. An ideological structure becomes enslaving when
it makes some value other than individual persons the organizing and dominating
value. I say "organizing"-that is, this value produces reciprocal
expectations, patterns of action, decisions, policies. I say
"dominating"-that is, individuals are subordinated to this value.
For example, one could argue that American business or
economic life is structured around, dominated by, a single value: Make money.
The GNP is the index of economic health. The Cadillac is the sign of social
status. Boards of trustees are often composed of men of money. Banks have replaced
cathedrals as our largest buildings. Our American culture rewards this value in
many subtle and nonsubtle ways. This means that other values will be pursued
only within this over-all priority. Thus justice in education, housing, medical
services, and job opportunity is promoted within the dominance of the financial
criterion-"if we can afford it." That means, of course, "if we
can achieve it without changing our life-style." In summary, then, when
large numbers of people are suffering or are denied their rights and
opportunities, look for a value that subordinates them and one that has been
made a structure by becoming the organizing force of policies and decisions.
What we are likely to forget, where responsibility for
health is concerned, is that health is deeply affected by the life-style of a
culture or nation, a life-style that is the embodiment of certain value
priorities. In the United States, our dominant instrumental values are
technology, efficiency, and comfort, for these support the "good life"
of consumership that is ours. Many of our health problems are directly or at
least heavily traceable to this so-called good life. It would be typically
American to face these problems with more technology and 'more pain relief,
more uppers and downers, better filters on the cigarette. Actually, if we get
our heads on straight--that is, if we are truly responsible-what is needed is a
change in structures, above all the ideological structures or value priorities
involved. For instance, I believe there would be far less smoking and excessive
drinking in a society organized differently than ours. Changing value
priorities is not easy, for it means changing hearts and minds and outlooks on
life. We are likely to forget this when we think of "moral responsibility
for health."
III
Another aspect of moral
responsibility for health that must concern us is that which gathers around the
notion of public morality. By that term I do not mean public participation in
the directions and priorities of medical practice, getting representatives of
the public on committees and decision-making bodies. Nor do I mean simply the
law. Since one acid test of law is feasibility, reducing public morality to the
law could all too easily collapse it into the utterly pragmatic considerations
that so often decide what is feasible.
Public morality is
something quite different. I would outline the notion by highlighting the fact
that health-care delivery is increasingly mediated very heavily by
institutions. We have group practice, insurance coverage, medication controlled
by the FDA, Medicare, Medicaid, etc., hospitals built by government, and
research supported and controlled by its agencies. Groups, it must he noticed
(whether hospitals, companies, or governments), have interests and concerns
other than the immediate good of the patient. For instance, the federal
government has a legitimate interest in population control; reducing the
welfare rolls; control of illegitimate parenthood; advance of diagnostic,
therapeutic, and preventive medicine; protection of life.
All of this suggests that
whenever other values are the legitimate concern of the mediators of health
care, the good of the patient can easily become one of several values, in
competition for attention and priority. This means that the individual is in
danger of being subordinated to these values. Public morality is precisely the
pursuit of these other values without violating individual rights. Or stated
differently, it is harmonizing public concerns with individual needs and rights--the
pursuit of these other public values while keeping the good of the individual
primary.
When the biomedical
enterprise is mediated by groups with other legitimate concerns, the danger of
mistreatment of the individual is real. The ones who are likely to suffer most
are the poor, the dependent (the elderly, retarded, prisoners), and the
"ordinary" patient who is neglected in favor of exquisite
technological virtuosities that consume disproportionate energies, time, and
funds. We are likely to forget that moral responsibility for health means
keeping a sharp eye on the harmonization of public concerns with the needs of
individuals, on public morality-so that the "1ittle people" are not
short-suited.
IV
The fourth dimension of
responsibility for health care that is easy to forget is directly attributable
to the technological and impersonal aspect of health care, especially in its
hugeness. When sickness calls for hospitalization, one is often ushered into a
vast system. Certain symptomatic conditions call for certain responses. Certain
turns of events dictate still other responses. Medical and paramedical
personnel are trained to respond swiftly, efficiently, and in standard or
orthodox ways to certain phenomena. Gradually, if imperceptibly, the impression
grows that "we (the medical system) are responsible for them," that
the medical system makes the decisions about treatment--and eventually that it
is necessary to subtract ourselves from systematic or institutional treatment
decisions by legislating living wills.
I realize that it is
possible to caricature here. But I am trying to paint a picture of health-care
delivery in our society that has tended to create and reinforce the impression
that it is the attending physician who makes the decision to treat or not to
treat. The Karen Ann Quinlan case is a dramatic and symbolic example of this
mislocation of the onus of decision-making. In that case, the Quinlan family
sought to subtract their daughter from the jurisdiction of her physicians. The
way events developed in that case, the presumptions seem to be that physicians
have a right to treat a patient unasked-indeed, opposed. This premise is wrong
in itself and dangerous in its implications-and responsibility for health
demands that we be clear on these points.
It is wrong in itself
because the individual, having the prime obligation for his own health care,
has also thereby the right to the necessary means for such basic health
care--specifically, the right of self-determination in the acceptance or rejection
of treatment. When an individual puts himself into a doctor's hands, he engages
the doctor's services; he does not abdicate his right to decide his own fate.
Patients retain the right to refuse a physician's advice, however ill advised
the patients might be in doing so.
Furthermore, this subtle
shift in the doctor-patient relationship is threatening in its value
implications, for in lessening the patients' rights, it will tend to blunt
those perspectives that are intended to inform the exercise of those rights.
The Judaeo-Christian tradition maintains that there are values more important
than life in the living of it. So it also holds that there are values more
important than life in the dying of it. For this reason the accumulation of
minutes of life is not the moral guideline by which dying must be done. For
instance, the justification for administration of painkilling drugs, even if
they should shorten life, recognizes that there is a value in being free, which
permits the pursuit of other values, such as prayer.
What I fear is that a system that increasingly reinforces
the notion of physician mastery over patients will at the same time undermine
those altogether balanced perspectives within which patient choice ought to
occur, for the very notion that a dying patient has a moral choice as to how he
will live while dying is an outgrowth of these basic perspectives. A system
that undermines that choice attacks, however subtly, the perspectives that
generated it. To forget this is to fail in moral responsibility for health
care.
V
Another aspect of
responsibility for health that we are likely to forget is the possible
implication of quality-of-life judgments. Much of contemporary health care and
very many decisions about treatment are concerned with not just the
preservation of life and avoidance of disease, but also with a certain quality
of life. This is absolutely as it should be. Thus we are concerned not just
with keeping a patient alive by surgery or medication, but with a certain level
of being alive, a certain acceptable mix of freedom, painlessness, and ability
to function. Problems like this are particularly acute and anguishing where
resuscitation is in question. Sissela Bok, composing a possible living will in
the New England Journal of Medicine, has put into words what most of us
feel about the technological potential of modern medicine:
I
wish to live a full and long life, but not at all costs. If my death is near
and cannot be avoided, and if I have lost the ability to interrelate with
others and have no reasonable chance of regaining this ability, or if my
suffering is intense and irreversible, I do not want to have my life prolonged.
I would then ask not to be subjected to surgery or resuscitation. Nor would I
then wish to have life support from mechanical ventilators, intensive-care
services, or other life-prolonging procedures, including the administration of
antibiotics and blood products. I would wish, rather, to have care which gives comfort
and support, which facilitates my interaction with others to the extent that
this is possible, and which brings peace.3
3Sissela Bok, "Personal Directions for Care at the End
of Life," New England Journal of Medicine, 295(1976), 369.
I believe that most of us
would agree with that and hope that we are treated in line with the value mix
expressed so well by Bok.
However, what we are likely to forget is that the
extension of such a mix backward to the incompetent child or baby is not quite
as easy. We are likely to forget in making such quality-of-life judgments about
the newborn that we can be discriminatory and be exercising a racism of the
adult world. Extrapolation backward to babies of the criteria we might use for
Karen Ann Quinlan--and use reasonably, in my judgment--has these
characteristics. First, it is extremely difficult for an adult to draw the line
at the right place, because in attempting to do so, that adult would una-