Sunday, January 11, 2015

“Illness” and “disease” in the Philippines

Doctor-patient interaction in a medical mission
in Puerto Princesa, Philippines
By Gideon Lasco, MD

IN THE FUTURE, we will have more illnesses without a disease, and more diseases without an illness. There are many reasons to believe that this will happen in the Philippines. There will be more illnesses without a disease as the gap between the explanatory power of Western medicine and the health-related experiences of the population continues to grow. On the other hand, there will be more diseases without an illness due to the increasing medicalization of the mundane - the classification of the common that, while expanding the realm of medicine to the everyday, fails to account for the breadth and the scope of human experiences. These trends are better understood in the context of health systems: in any society, there is a dominant health system, in our case Western medicine, which is the “disease-labeling authority”. Other health systems exist, offering alternative disease labels. These alternative systems likewise offer competing “illness explanation”, providing “explanatory models” for particular experiences of a patient or a community.

Why is there a distinction between disease and illness in the first place? Medical anthropologist Arthur Kleinman makes the following contrast between the two concepts: “A key axiom in medical anthropology is the dichotomy between two aspects of sickness: disease and illness. Disease refers to a malfunctioning of biological and/or psychological processes, while the term illness refers to the psychosocial experience and meaning of perceived disease. “ (1981:72)

This distinction is important because it is an acknowledgment that the patient and the physician apprehends two different realities; illness is what the patient experiences; disease is the label or classification that the physicians ascribes to those illness, based on their interaction. An illness can bring forth many diseases: what a patient is subjectively feeling (hand tremors) can be a Western disease (i.e. neuropathy) and a folk disease (i.e. pasma). On the other hand a single disease label such as community-acquired pneumonia can also bring forth many illnesses (i.e. ubo, pilay-hangin, hirap huminga).

Disease has been equated to its western bio-medical definition and illness is identified with the local indigenous knowledge (Fabrega Jr, 1972; Young 1982), but it is an interesting exercise to apply the same distinction between personal illness and folk disease. In the context of the illness-disease dichotomy, I find the term “folk illness” problematic, as indigenous medicine has its own set of classifications too, and just like Western medicine, it may or may not fit the “illness” experience of the individual. The interchangeability, and close approximation, of folk and individual illness is a consequence of the nearness-of-fit between these two distinctive labels. The folk disease / concept of “ubo” is so successful in defining the illness experience of a Filipino experiencing cough that it is adopted by the individual to describe what he feels.

Thus, the non-difference between illness and folk disease is understandable.  Western medicine, on the other hand, has the unique position of creating a palpable distinction between disease and illness, because it has gone beyond sensory observation (i.e. palpation, inspection) to the unseen yet mighty diagnostic tools of microbiology, biochemistry, and radiology. Psychiatry, too, has constructed an architecture of disease that is far divorced from what the layman assigns to particular conditions.  Yet for all the taxonomic complexity of disease nomenclature, for all the criteria that have been assembled to define them, Western medicine is non-absolute, and is imperfect in its objectivity: disease itself is a relative term, shaped by a plethora of factors – proof of this are the changing definitions of many a condition, including many psychiatric conditions, medical conditions, and the evolution of “new” diseases such as obesity and osteoporosis. Yet, it is much more rigid and objective than illness, and for the purposes of discussion, it is useful to see it as absolute and objective relative to its more relative, subjective counterpart.

Again, to summarize: illness is what the patient experiences; disease is the label the dominant health system uses to “code” what the patient experiences as part of disease taxonomy and nomenclature. Although the illness-disease dichotomy may be applied to other health systems vis-à-vis the patient’s experiences, it is more prudent to restrict our discussion of it as being a good model in describing what we experience today in our society.

If we accept the aforementioned definitions of disease and illness, the “fit” between illness and disease may be construed as a measure of the success of the dominant health system to account to health experiences of the individual patient and the community.  Corollary to this, the prevalence of disease without an illness, if ever we will come to a point when we will actually measure these things, may be construed as an index of weakness in the health system. Let us go further and use politics as metaphor: Western medicine, as the government of health, only has jurisdiction over diseases, and therefore illnesses without a disease are alienated, stateless. While Western medicine itself is not a single entity, throughout the discussion I will deliberately personify it, both to simplify the discussion, and to articulate the hope that it would act as if it were a single entity, able to identify its shortcomings and act on them.

Having explained the context of diseases and illnesses amidst co-existing health systems, let us proceed with four speculations:

1. In the future, we will have illnesses without a disease as long as Western medicine ignores, and fails to account for, the “folk illnesses” and the “psychological lang yan”. 

My mother, a very healthy, vigorous fifty-year old woman, has been feeling a vague syndrome of headache, chest pains, weakness, and stomachache since a year ago, and as the family doctor, I have struggled to identify the disease behind this illness. It came to a point that a suspicious ECG reading forced me (and her) to rush to Asian Hospital from our house in Laguna, fearing that it the chest pains might be cardiac. Yet, all the laboratory results came out to be negative. The topnotch cardiologist declared it to be a gastrointestinal problem, likely GERD, but three weeks of treatment was futile; once, while I was abroad, my mom was even duped into taking a full liver and Hepatitis profile, costing thousands but revealing nothing. Until now, she experiences the symptoms, but there has yet to be a diagnosis that can string everything together.

Could it be a folk illness? Probably, a traditional healer will at least come up with a diagnosis, but my mother does not believe in traditional healers so consulting them is out of the question.

Could be it be fall under the category of “it may just be psychological” or “it’s psychogenic”? There is a powerful temptation among us doctors to dismiss as “psychological” things we do not know, but the patient’s reality, not our own, defines what an “illness” is, and if we fail to address it, we have neither healed nor given comfort. Illness, after all, is “no less real” than disease (Pool; 48). Again, this is an area of weakness, and for Western medicine to be truly a “medicine for the people” it must recognize that these areas are real, and conditions that cannot be classified, no matter how "petty" in our clinical view, deserve to be studied. Unfortunately, little attention is focused on the mundane conditions that afflict most of humaniy: back pain, headache, weakness – as a young doctor almost every week someone complains to me of these symptoms but I have to admit that I am not adroit in dealing with these seemingly facile conditions, partly because they were not emphasized in medical school.

Indeed, my experiences with family and patients alike show that in real life, symptoms in real people differ from the expected symptoms we find in the textbooks; and thus so many people have illnesses that cannot be classified, or defined in terms of disease. Since Western medicine cannot offer an explanation, patients turn to alternate health systems who offer the two functions of a health system: to heal and to explain. Whether or not they are successful in these functions is beside the point; at least they offer something, even if this offer comes with the desire for financial gain. In the Philippines, this speculation can lead us to expect the rise of “Traditional medicine clinics” and “Alternative medicine clinics” – a trend I already see in big cities in Mindanao and Visayas. In Davao, for example, there are prominent advertisements of the clinic of “Dok Alternatibo”, who even has a radio program that answers people’s questions.

The solution, of course is for Western medicine to check the premises upon which its construction of disease is built; it must be more inclusive, more dynamic, and, whenever it is imposed upon a host culture apart from its parent culture (i.e. American culture; British culture), it must also take into consideration the health beliefs of the people.

2. In the future, we will have more diseases without an illness as medicine becomes more specialized.

When pathology goes beyond symptomatology; i.e. when doctors are able to see something wrong even when the patient does not, diseases come to existence without a corresponding illness. But then, the very act of diagnosing a disease almost always generates a disturbance upon a person, such that a proposition might be advanced that no disease is without illness; the very act of diagnosis, while at times therapeutic, is also pathogenic (i.e. illness-generating) for it generates, at the least, anxiety, and at the worst, stigma.

This will become more significant in the future, as doctors’ ability to probe beyond what can be experienced grows more powerful. Tumors used to be detected by inspection and palpation; now, they are detected even before they are felt, by the means of x-rays. This is, at face value, a very positive development: early detection of breast cancer is life-saving. Yet, there are also challenges: It is now possible for a woman to suddenly undergo life-changing treatment (i.e. mastectomy) for a condition that she didn’t even know she had. Thus, more than ever before, Western medicine demands faith from its constituents - faith enough to believe the diagnosis and faith enough to accept and actually undergo the treatment prescribed.

Technology is not the only driver towards this trend; defensive medicine is also contributory; as doctors in the United States and elsewhere try to protect themselves from negligence by overdiagnosis. In order to It can be argued that another, related driver is commercialization of medicine, which favors the establishment of diseases where there are none, for these novel diseases, even if they are without illness, necessitate drug therapy. An example is osteoporosis, a “weakening of the bones” diagnosed solely by a diagnostic test. In Overdosed America, medical doctor John Abramson traces the popularization of osteoporosis and links it with the development of certain bone-density-modulating drugs. He concludes that normal aging (which naturally results in decreased bone density) has been medicalized. And, to exacerbate matters, this disease without an illness can potentially create actual disease with illness – by way of side effects of anti-osteoporosis drugs. Ultimately, the patient suffers and he or she loses trust in the health system.

Another problem with these “diseases without illness” is that they are also areas where alternative health systems can make the offensive, oftentimes with the intent to make profit. The easiest illness to treat is that which does not exist, at least on the surface; it is easy to make patients believe that their breast cancer is gone when they never felt it to begin with. Moreover, diagnostic tests employed by alternative medicine practitioners, such as “nutritional microscopy” and “urine analysis” rides on the power of Western medicine to pronounce diseases even without symptoms, and makes its own “diseases”, after which they make their own “cure”. Indeed, the very existence of diseases without illness implies that it is no longer possible for patients to verify their own health and wellness; and with this “oversight on one’s body” lost, patients become more vulnerable to other sources of “authority”.

These examples make the point that diseases with illness are also a good indicator of what to watch out for as we guard ourselves against opportunistic health systems (and individuals) who wish to make a profit from this area of vulnerability. Western medicine must adequately explain and justify the benefits of making diseases without illness; it must present itself as trustworthy; it must not abuse and it must not let others abuse this unique position of declaring what goes on inside a human body unilaterally (i.e. not requiring the validation of the person himself).

There is a very special case of disease without illness – and a most compelling example of such: diseases of the future. The diagnosis of future diseases is a very important scenario that will become more of a reality as genetic testing comes of age; long before the disease manifests, it has already been prophesied by genetics. A predilection for cancer can be established at birth, and long before the cancer actually manifests (if at all it manifests), it would have already produced anxiety, fear, and stigma. So powerful and so real is the impact of this eventuality that the United States, in 2008, passed the Genetic Information Nondiscrimination Act, which forbids group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals’ genetic information when making hiring, firing, job placement, or promotion decisions. This act acknowledges that diseases of the future as a disease without illness which becomes an illness without disease as the patient reacts negatively to what might befall him or her.

3. Wellness without health is the inverse of illness without disease and we will see this more as wellness becomes commercialized.

In his textbook Medical Anthropology, Pool states that there “parallel to the distinction between illness and disease, a similar distinction can be made between cure and healing.” (2005:53) This parallel, inverse concept can be related to the trend of “wellness” which we see today and which I speculate will be much bigger in the future. The introduction of a variety of supplements, fad diets, and various therapies – from physical to metaphysical – all propose to “heal” and achieve “wellness”.

There is, of course, great commercial interest in making people embrace this kind of wellness. Yet, their vulnerability to this promise of better health can be traced to Western medicine’s shortcoming in explaining to its constituency what it means to be healthy, and what is the proper way to achieve wellness and health. Indeed, the explanatory responsibility of Western medicine is not only limited to the need to account for all illnesses as diseases; there is also the need to define wellness as health. There is a need to make sure that “wellness” really translates to health, even as the state of wellness, independent of physical basis, can also be produced. Our concern here is that pursuit of wellness that does not lead to health (i.e. intake of worthless supplements) has an opportunity cost, taking away time and money that could have been devoted to better activities that actually lead to better health.
I would like to reiterate that areas where claims of wellness are allowed to be made without real health indicate the failure of Western medicine to communicate achievement of true health and wellness. In the area of boys’ height, for instance, the fact that a food supplement claiming to make kids taller is thriving on the market means that there is inadequate knowledge about the physiology of growth. Other inadequacies in the health system come up here, including poor regulation by government agencies.

4. In the future, diseases without an illness would become illnesses without a disease. 

Who is the sanctioned pronouncer of “disease”? The democratization of information – manifest most latently in the Internet – has enabled laypersons to diagnose themselves, potentially creating for themselves diseases without illness, which then become illnesses without disease, as worry sets in, then panic, then despair.

This is what we see now, as medical information becomes readily available in the Internet. With Kalusugan.PH, my project to bring health information to a wider Filipino audience, I can attest to the fact that a lot of Fillipinos are searching for diseases directly. Sexually-transmitted diseases are particularly searched, likely because there is no other way to access this information.

Again, this interaction between disease and illness creates a vulnerability; there is a lack of explanation, and if an unscrupulous third party offers it, even for a price, it might be taken out of desperation. Health information then becomes a commodity, regardless of the ramifications of its being in the hands of those who do not necessarily know how to process it. The most direct consequence may be anxiety for those who are diagnose themselves with a disease that they don’t have in the first place – this then turns to illness without a disease, the cure of which is simple reassurance from a doctor. Also, third parties can mislead these patients by providing wrong or inaccurate information.

Indeed, this is one important challenge for Western medicine: to empower patients; to make information available for patients but at the same time make doctors available to patients to explain and interpret this information, as needed. Against the much more accessible and affordable Internet, doctors may retain their dominance if they demonstrate somehow that they alone can offer: competence with compassion, reassurance without judgment, objectivity with trust.

The Internet is not the only source of this concern: mass media, including TV and radio talk shows featuring doctors, can also inadvertently cause people to diagnose themselves. Health information may also diffuse vertically in hospital structures, and nurses and health professionals (there are lots of them right now) may also decide to “play doctor” and make pronouncements of disease.

The solution here is very clear: health care must be accessible and affordable to begin with; without money, patients are left with no choice but to turn to other sources of health information. But with doctors readily available and affordable, there will be little impetus to resort to others. The issues that arise with the democratization of health information can be solved by the democratization of health care itself. These thought experiments on illness and disease can go on and on; Kleinman (1981) affirms this, saying that there is a circular relationship between illness and disease.  We need not belabor the point as I believe that our case has been established with these four illustrations.

CONCLUSION
The disjunction between illnesses and diseases point of areas of vulnerability where there are gaps between patient experience and physician knowledge. This is one role which medical anthropology plays, and ought to play, on health policy: in a drive to improve the capacity of our modern health care to heal, we must not lose track of the explanatory role of medicine, which, if not achieved, can lead to illness. While illness and disease are different, their net effect is similar: patient suffering, whether anxiety, pain, unnecessary loss of time or income – stomachache by any other name will hurt as badly. By striving to create a correspondence between illness and disease (i.e. a biopsychosocial approach), we reduce these areas of vulnerability, therefore enhancing clinical care and overall health of a population. Helman (1980) concludes: “For medical care to be most effective-and acceptable to patients, practitioners should treat both illness and disease in their patients at the same time.” Going back to our model of Western medicine being the dominant health system, we can paraphrase Helman and say: “For Western medicine to maintain its incumbency as the dominant health system, it must listen to its constituents”.  And perhaps add: “Or else, other models will prey on its constituents, leading to dire health consequences.”

Whereas the approximation of illness and disease was seen as an indicator of improvement in the health system, our speculations point to an exacerbation in this disjunction in the future, brought about by an interplay of numerous factors, including the growth of commercial interests (i.e. the nutriceutical and the pharmaceutical industries), the trend towards defensive medicine, the persistence of medicine’s negative, condescending attitude towards cultural beliefs, as well as advances in medical technology like genetics and diagnostics and other technological advances such as the Internet.

The dynamics of illness and disease is likely to become more interesting as the trends we articulated unfold in the near future.

Manila
June 2011

SELECTED BIBLIOGRAPHY

Abramson, John: Overdosed America: The Broken Promise of American Medicine. HarperCollins Publishers, 2004.

Fabrega, Jr. H.: Medical anthropology. pp. 167-229. In: Biennial Review of Anthropology. B.J. Siegel (Ed.).Stanford University Press, Stanford, 1972.

Helman, Cecil: Disease versus illness in general practice. pp. 548-552. Journal of the Royal College of General Practitioners, Sept. 1981.

Kleinman, Arhur: Patients and Healers in the Context of Culture. pp. 56-80 University of California Press, 1981.

Pool. Medical Anthropology. pp. 40-55. Open University Press, 2005

Young, Allan: The Anthropology of illness and sickness. pp. 1205-1210 Annual Review of Anthropology, 1982.

No comments:

Post a Comment