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MINORITY RIGHTS IN MEDICAL TREATMENT
Andreas Ch. Takis*
The purpose of the present lecture is to outline the challenges that
various trends of communitarianism pose to liberal democratic tradition
and to point to the practical impact such argumentation has in the field
of medical treatment and health care. Vindicating democratic
liberalism, though, requires a substantive refinement of its principles to
a more culturally sensitive direction.
The societies we are living in came to be the liberal and democratic polities they
are after intense and sometimes bloody internal struggles over issues deeply
dividing citizenry.
Our way out of the problem posed by persistent pluralism of mores and
opinions, that is achieving peaceful coexistence and cooperation among
persons with divergent ways of life, is based, at least we usually claim so,
on our political communities being firmly committed to a set of abstract
but quite distinct public values: individual freedom and equality before
the law for all.
Civil rights, that is - the legal powers actuating these values - are meant to ensure
that each one’s individual choices in life will be respected as well as that the state
will remain neutral vis-à-vis such choices by avoiding to impose some specific
conception of the good to its own citizens.
These values are taken to be constitutive to our public culture and to shape the
institutions governing most aspects of social life. Medical treatment and health
care services are no exception. The normative primacy respect of individual choice
of the patient has acquired through the legal concepts of informed consent and
confidentiality bears proof enough for that.
Yet, the liberal ideals officially professed by western societies came under severe
criticism the last 25 years. Moreover, such criticism stems simultaneously with
similar, if not identical arguments, from the right, say traditionalists, as well as from
the left, say progressivists. The criticism is primarily directed against what is taken
to be corner stone of liberal political morality: namely, the idea of the freely
choosing self.
It is claimed then that such an idea of individuality is both unrealistic and
maliciously misleading.
It is unrealistic because it grossly neglects the fact that in order to make whatever
choice one has to have criteria, and criteria is not something one just creates for
oneself out of nothing, but are to be found instead embedded in specific social
milieus of shared language, values and tradition, that is they are to be found only
in the specific community one belongs in. Communities provide the background
against which the idea of options is formed and, consequently, the idea of
choosing gets its very meaning.
Therefore, the argument goes, communities form a kind of an inescapable thick
horizon of conventions and practices, laden with meaning and value, which allow
for evaluations but cannot be questioned themselves unless one is to be alienated
with oneself (which is, of course, impossible). As constitutive then of our very
identities, cultural communities and their perpetuation over time must be our
primary moral concern.
Furthermore, the liberal conception of the self is misleading because it is insincere.
The professed neutrality of the state, so the argument goes, is just myth. Still, in
explaining away the myth of neutrality, traditionalists diverge with progessivists.
The first group – the traditionalists – claim that the state is not, cannot and should
not be neutral towards divergent conception of the good life. The liberal state
"fakes" being neutral, but in reality it promotes a specific substantive morality of
excessive toleration and this morality is unpracticeable, nonsensical and
detrimental to the real public good since it encourages disintegration of traditional
social bonds.
A better morality has therefore to be substituted to the mistaken one; that is a
public morality that will directly reflect the traditional values that actually hold
society (or its majority, at least) together and whose strictures should be enforced
by the state for the sake of the common good, even against divergent individual
choice or dissident opinion.
One can easily recognize the impact of such traditionalist arguments in the field of
medical treatment. Pro life and against choice partisanship in the hotly debated
issues of abortion and euthanasia are probably the best examples. Allow me
though to leave those sensitive issues aside here and focus rather on the
progressivist trend of communitarianism.
Instead of a mistaken substantive morality, those forming part of the latter or
progressive trend ascribe to liberal morality an intention to deceive, by concealing
behind the façade of neutrality the fact that actual social life is dominated by the
culture of the majority or of the elite of society.
By remaining blind to the actual distribution of power and prestige, liberal neutrality
and the conception of the self that goes with it simply promote group egoism and
cultural and moral imperialism of the many or the strong against the few, those
weak or those different.
If liberalism then is to honour its allegiance to the principle of respect for dignity of
each and everyone, it has then to be more concerned of the social environment
whence one dwells one’s own feeling of worth and dignity. This requirement is
usually translated into a claim for minority rights. Such rights are supposed not
upon specific individuals but rather to the cultural community as a whole.
Their point is to allow for the survival over time of an endangered cultural
community in two ways, namely:
1. firstly, by providing the legal means for its security from external interference;
and,
2. secondly, by eventually subsidizing, where needed, its cultural reproduction.
The idea of minority rights might sound a little bit like subsidizing a cultural zoo,
and this indeed seems far away from the concerns of traditionalists.
Yet, communitarian traditionalism and progressivism are closer than they might
seem at first sight. Instead of opposed trends they rather reflect different
situations in which some cultural group might find itself. Moreover, unless some
traditionalist opinion is openly embracing intolerance, both trends seem to aspire
to an ideal of a fragmented social worlds where self sufficient and secluded
cultural groups peacefully co-exist.
What really brings them together though is rather the legal and political
consequences their arguments aspire to have. Because what they both insist on
claiming from actual liberal and democratic states is the institutional ability of
cultural communities to freely regulate their internal functioning according to their
traditional values through their traditional internal power structures. The other side
of the coin, therefore, in the case of minority rights is necessarily a claim to a
degree of political autonomy appropriate for the perpetuation of the cultural
community in danger.
This is exactly the political and moral crux of the issue.
For those on whose lives traditional powers and traditional values claim authority
are not just or only members but people, citizens and bearers of fundamental
rights not always compatible with tradition.
Mere reference to the field of medical treatment can be suggestive. Traditional
decision making structures characteristically involve family or community elders
empowering them at such a degree that they can often silence dissent stemming
from other community members even those personally involved in the case at
hand. Furthermore, in many cultures illness is usually an issue heavily laden with
firm moral and metaphysical beliefs and it is no surprise therefore that dealing with
illness often takes the form of a religious ceremony whose content, that is the
medical acts themselves, are dictated with details by tradition.
It is to be expected then —and this is actually the case – that cultural communities,
through elders or family members will claim a good part of the decision making
power on the appropriateness of medical treatment a member of the community is
receiving.
Such claims can extend in the whole field of medical treatment. Elders might and
do claim to be fully informed of diagnosis, prognosis and treatment before such
information is disclosed to the patient or against his/her will, or even exclusively,
withholding information from him/her. They may want also to question or dispute
the appropriateness of the treatment chosen by medical authority or the patient
him/herself. Mostly, they should be expected to keep for themselves the authority
to decide upon crucial issues of further treatment and dictate the content of
specific medical acts, even against the will of the patient. I do not need to expand
on examples taken from "exotic" cultures here, such as voodoo. I think that most
of us would already intuitively reject such third party interference. But intuition is
not enough since the communitarian argument does have a bite.
If liberal and democratic political tradition is to survive the communitarian assault,
then it has to refine and adjust its core principles to the truth that
communitarianism has made evident. And the truth is that, even if we are more
than just that, all of us are as a matter of fact thickly cultural entities, and neither
statistical nor ideal abstractions.
Moreover, even if we were not asked whether we would like to have a culture or
which culture we would prefer to be born and raised in, our being attached and
belonging to some specific culture is something we rarely deplore and most often
something we take pride from. Self assertion or one’s acquiring the feeling of
one’s own worth is indeed something unthinkable outside some cultural contexts.
Does all this entail that autonomy; the long cherished value of liberal democratic
thinking is a chimera or a lesser value than cultural affiliation. I do not think so.
All these come just to the conclusion that cultural attachment is the inescapable
field for an individual right to consolidate and exercise his or hers autonomy rather
than an unquestionable barrier to it. Personal autonomy is not a myth. It just
needs culture to get real.
The communitarian argument overlooks the fact that people can and sometimes
do willingly move from one culture to another which they think better, even if with
great difficulty. Much more commonly, people do evaluate central tenets of the
cultural doctrine and even partly reject it, without feeling some major moral or
semantic loss. And they do so with arguments and criteria taken from outside as
well as from inside their own culture. Most importantly, what communitarianism
misses is that by so doing people change their own cultures or even create new
ones, which stand to on another in relations of confrontation as well as crossfertilization.
The fundamental mistake of communitarianism then is that it takes culture and its
content to be something fixed and immutable over time as well as patently
accessible without disagreement. But as we well know this is not so. Questioning
the value of one’s culture is not something one does only in dramatic
circumstances of deep identity crisis; it is also something one does in disagreeing
with someone else about the content of their common culture on some specific
issue.
In doing this, people are digging deep for solutions better than others and this
process can only stop at a point where the solution is not what the specific culture
enjoins in the case at hand, since that would beg the very question but rather what
the culture should enjoin in such cases. Transcending thus one’s cultural horizon,
one raises oneself necessarily at a higher level. I would call it reflective, of
practical judgment, above the stricture of one’s own culture. Such mundane
reflection on one’s own culture amounts to nothing more and nothing less that it
does make sense to ascribe to people the ability to assume responsibility for their
own cultural identity. Even in this weak sense, the ability to endorse a culture be it
the one that one already has, is what bestows primary moral relevancy to the
inescapable phenomenon of cultural attachment.
Still, what difference does it make for democratic liberalism to endorse a thicker
conception of the self? Phrased rather as a slogan, a simple answer would be to
target the practical consequences of the celebrated maxim "equal respect and
concern for all”, not to abstract or platonic entities called individuals but to very real
and concrete people with very real lives and very specific cultural attachments,
Turning respect and concern a culturally sensitive issue entails grossomodo two
things, namely:
1. A pressing requirement to make the fundamental civil rights provided by
liberal democratic constitutions to citizens qua citizens or persons, worthy for
their specific recipients, that is to ensure that those holding such rights will
be really able to exercise and enjoy them; and,
2. An equally pressing requirement to make discharging the duties and burdens
which one assumes as a person or a citizen as far as possible compatible to
the cultural attachments that shape his or hers identity.
Complying with this twofold requirement is a matter of more or less than of all or
nothing. Efficient pursuit of such goal is of course subject to budgetary restrictions
and other externalities, such as the presence of institutional settings able to play
such a role. Moreover, steps taken in such a direction are necessarily customized
in view of specific situations and sometimes might require previous research and
careful planning in order to be appropriately targeted.
Culturally targeted respect and concern would defeat its own purpose if it did not
involve those immediately concerned, i.e. specific cultural groups, in voicing their
needs and demands and deliberating the specific legal powers and measures to
achieve real respect and concern for their cultural identity.
Maximization of these goals might indeed require in some cases conferring
regulatory or adjudicating authority to traditional institutions, such as a deeply
respected community council. Still, such a move cannot amount to conferring to
some cultural community any kind of collective rights, such as those envisioned by
communitarianism. The claim for respect and concern sensitive to one’s cultural
identity is an individual claim whose moral soundness and overriding strength
stems out of one’s individual endorsement of cultural attachments, be it in the
weak sense mentioned above.
Cultures fade out as well and silently people change their minds and attitudes.
And in such cases there are no longer grounds for differential treatment. However,
the element of endorsement exhibits its normative significance primarily as an
absolutely rigid limit on the extend to which power over a culture’s members’ lives
can be legitimately conferred upon some traditional structure such as a family or a
community council. Culturally sensitive protection and support is due to some
person as an active form of respect and/or concern in view of his or her specific
cultural identity, not because this specific culture has some specific value, but
because this person, by endorsing it, makes it a part of his or her own value as a
person. Therefore, regulatory or adjudicative activity of traditional structures
restricting the ability of culture members to change their minds, criticize the culture
or leave it altogether are unquestionably ruled out from the outset.
Heresy and apostasy might be cardinal moral sins for some, yet they cannot but
always remain legitimate in a liberal democratic polity.
In reaching my conclusions, I think that the above discussion of the communitarian
challenge can provide a very rough still useful direction in dealing with cultural
identity issues in the field of medical treatment and health care.
Illness, though a culturally sensitive issue, is so intimately connected with the
persistence of our personhood’s infrastructure, that any third party can never
unwillingly assume deciding upon such matters. As I stressed above, as long as
the patient retains mundane ability to understand the information provided by
medical authorities, claims of community or family elders or of other traditional
structures should be rejected. In such circumstances old-fashioned primacy of the
choosing self converges with the culturally sensitive respect requirement. In
acknowledging the final authority of the patient’s informed consent, it is up to his or
her discretion to honour or not his or her cultural attachment by empowering
traditional community structures to receive infor
mation and make decisions
concerning his or her treatment.
Actual legal practices such as "living wills", appointment of a health care agent or
advance care planning, can easily accommodate such a need. Hard cases are
more likely to occur when strong cultural attachments lead a patient to strenuously
refuse appropriate treatment, even at risk of his or her own bodily integrity or even
life, while leaving legal issues aside. The endorsement element points naturally
towards the first person authority. Yet, medical institutions and authorities are
normally expected, before complying with the patient’s wish, to use all means of
persuasion, proselytization to disenchanted modern medical culture included.
This requirement rests on the fact that culturally sensitive respect and concern
includes the requirement to access closed cultures by building bridges of humane
communication between the doctor’s and the patient’s culture. One should also
expect that a similar solution would be probably appropriate where the patient’s
attachment to his or her culture is strong and ardent that seems to elude the very
idea of informed consent. Still, the patient will be the one to outlive the medical
treatment but perhaps with a soul burdened with deadly remorse.
This brings us finally to another type of hard cases, namely those where reliable
first person authority is absent due to age and temporary or permanent impairment
of ability to provide consent. Of course, here is to expect the strongest pressure
from traditional power structures.
However, once again, the endorsement condition points to a certain direction,
Medical effort normally will be directed to ensuring or restoring first person
authority. Therefore, claims of traditional structures to the contrary direction
normally should also be rejected.
Real life situations especially where both illness and cultural conflict coexist, are of
course immensely more painful arid dramatic than an exercise in moral geometry
might otherwise allow.
That is why even though I personally, being a lawyer, find such directions
persuasive, in the ocean of real human pain and compassion, the strictures of
justice are only rough navigation signs.
__________
* Andreas Ch. Takis, Deputy Ombudsman for Human Rights, The Greek Ombudsman's
Office, Athens, Hellenic Republic.
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