When we think about medical diagnosis, we usually think in terms of science. The conventional (and accurate) wisdom is that diseases are named and classified on the basis of scientific research. For example, the roughly decennial revisions of the World Health Organization’s International Classification of Diseases (ICD) partly reflect advances in scientific understanding of diseases and injuries.
The cataloging and naming of diseases is a condition of scientific research, as well as its product. Indeed, how are doctors to explain and control disease without a common language for the phenomena that they observe? The ICD comprehends the entire spectrum of human disease and injury, and its updates reflect the best new knowledge as well as set the stage for the next wave of medical advances.
But the formal classification of diseases has another aspect, one that concerns a variety of important social functions. It provides a set of disease names and numeric codes for assigning and tracking health-care expenditures and services. Governments, insurance companies, and patients use these names and codes in accounting and budgeting.
The ICD code also frames eligibility for related social goods like hospital care, medical retirement, claims for disability compensation, hospice care, and home health care, to name a few. From the doctor’s perspective, diagnostic classifications like the ICD provide the official language to be used in medical records, discussions with patients and their families, and in billing for services. For patients, diagnostic classifications provide the framework for understanding their own and others’ disease processes. Finally, diagnostic classification provides politicians the language for building or dismantling health programs.
Clearly, the public and social character of diagnostic classifications of disease extends to private organizations. Consider organizations that regulate medical licenses or administer medical emergency relief funds. (In the non-medical area, think of business organizations that regulate trade or educational commissions that accredit schools). Government is hardly alone in creating the formal rules, principles, and guidelines that structure and regulate public life. Public policy is defined by the public’s interest in the policy, not who made it.
At least in democratic societies, such policies should be accountable to the public, and the classification of diseases, since it serves many of the functions of public policy should be no different.
It turns out that psychiatry, in particular, has exhibited leadership and innovation in recognizing the public-policy aspects of diagnostic classification. Both the ICD classification of mental disorders, and its American counterpart, the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders (DSM) efforts have taken pains to make diagnostic classification accountable as examples of public policy. Both organizations have included diverse representation on their working committees, invited input from “outsiders” to the professions and collaborated with related institutions and organizations in preparing their classification revisions.
In my view, the classification of mental disorders, as a form of public policy making, poses exceptional challenges. A primary challenge is posed by the nature of mental illness itself.
Mental illness invades the mind and the self, the same domains where political beliefs and social interests reside. The history of world psychiatry is peppered with diagnoses of mental illness based on political dissent. Public policy concerning mental illness must, therefore, consider carefully the potential for imposing unjustified social and political values on people in the guise of the classification of disease.
On the other hand, psychiatric public policy must also take into consideration the feeble social and political status of the severely mentally ill. Public policy concerning the mentally ill should empower, not marginalize.
The latter point, however, is where the current puzzles reside for psychiatric diagnosis as public policy. As the WHO begins to plan the ICD eleventh edition and the American Psychiatric Association begins to plan the fifth edition of the DSM, one wonders how to ensure additional moral, social, and political accountability in what traditionally have been viewed as the instruments and products of science.
Should patients and their families be directly involved in the development of classifications? If so, how? If not, how can the needs of scientific credibility and public accountability be met?
While psychiatry may be leading the debate about these problems, other medical specialties cannot be far behind. As scientific progress broadens the range of options regarding health, the trappings of social, political, and moral choice will increasingly infiltrate medical diagnoses.
Debates about reproductive freedom and “cosmetic” enhancements – such as the use of growth hormone to “treat” short stature – already occupy the news. How will the associated conditions be classified? By whose authority and with what accountability? What social values will be advanced?
Classifying disease should reflect the best collaborations between science and politics. With thoughtfulness and perseverance, psychiatry’s current deliberations about diagnosis as public policy will provide a road map for the broader medical debates lurking ahead.