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 information 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.
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* Andreas Ch. Takis, Deputy Ombudsman for Human Rights, The Greek Ombudsman's Office, Athens, Hellenic Republic.
Copyright 2005. Greek Legal and Medical Conference