Monday, June 15, 2009

Health, illness and disease - Who is to decide?

The following is an article from The Hindu dated 12th June 2009.

Bridging the disease-illness divide in medicine

K.S. Jacob

The failure to address issues related to the disease-illness dichotomy and the cure-healing divide and to bridge the gap between these part-perceptions is a major cause of patient dissatisfaction.

The increased cost of health care and the urban-centric nature of our health delivery system make it unaffordable and inaccessible to the majority of Indians. The health-hospital, pharmaceutical and medical education industries, which profit from disease and illness, also complicate the situation. These factors have resulted in dissatisfaction with quality of health care for the vast majority of the population and a crisis in health care in India. The problematic conceptualisation of disease and illness which underpins many of these issues is highlighted.
The disease-illness distinction: Disease and illness are commonly used as synonyms and clearly highlight the lack of conceptual clarity. Medical definitions of disease emphasize the pathological process and the deviation from the biological norm. Diseases are pathological entities conceptualised by physicians who offer scientific causal explanations and prescribe treatments with the aim to cure. Illness, on the other hand, is the patient’s experience of ill health, is influenced by culture and focuses on the relief of suffering.While there is an overlap between disease and illness, the divide persists because of the absence of a one-to-one relationship between disease and illness. Similar degrees of pathology generate different amounts of pain and distress. The course of a disease can be different from the trajectory of an illness. In addition, illness can also occur in the absence of disease (for example, medically unexplained physical symptoms causing distress). These result in differences in perspectives about the condition between doctors and their patients.
Modern medicine in perspective: Recent advances in medicine have made curative treatments an attractive option. However, modern medicine has limitations including its narrow focus in making disease more important and interesting than illness and a single-minded pursuit of cure. Physicians often disregard the patient’s interpretation and explanations and discount the human context of illness.Physicians are taught to focus on underlying structural and functional defects and often tend to ignore the impact of the illness on the patient’s life. Partial understanding of conditions (e.g. hypertension), or occasionally complete ignorance (e.g. myalgia, somatisation disorder), results in symptomatic treatment. However, the ubiquitous use of medical jargon suggests that the scientific halo, reserved for the few conditions which we now comprehend reasonably well, is indiscriminately applied to all forms of human distress.Such a divergent focus results in dissonance between doctors and their patients. While doctors highlight naturalistic explanations for a disease (such as abnormality, degeneration, infection, malignant change), patients focus on personalistic beliefs about causation (such as beliefs in karma, sin, punishment, evil spirits, black magic, supernatural explanations). Many patients seem to simultaneously hold naturalistic explanations about disease as well as personalistic perspectives on illness, despite the apparent contradictions. Patients and their relatives also concurrently seek diverse interventions—medical and non-medical. Hospitals which practise modern medicine compete with facilities which offer faith healing and traditional systems of medicine. People with illness who fail to respond to traditional methods of healing visit allopathic centres with reasonable success and vice versa.Diverse systems of medicine and healing flourish in India. While significant technological advances have had a major impact on the health of individuals, many other issues also seem to define health and disease. Financial gain for doctors and hospitals, niche markets for the pharmaceutical industry, insurance reimbursements and opportunities for academics also influence disease categorisation. While there has been much progress, many so-called advances are illusions. Many new disease categories are introduced without adequate scientific evidence. Re-categorisation of existing entities without adequate basis is also common. In addition, expensive new drugs with no real improvement in efficacy give an impression of superior solutions. Although medical advances have resulted in significant improvement in the health of individuals, many indices of the health of populations suggest major unsolved problems (such as malnutrition, shorter life span, infant and maternal mortality ass! ociated with the poorer sections of Indian society).
The success of traditional and folk medicine: Traditional and folk systems of medicine, despite their lack of scientific rigor, continue to enjoy the confidence of the general population. Their success can be attributed to their focus on the illness experience. Their practitioners seem to successfully elicit, offer and negotiate explanations and expectations with their patients. Traditional healers share symbols and metaphors consistent with lay beliefs and their healing rituals are more in tune with the psychosocial context of illness.
The need for a new conceptualisation: Doctors can learn many lessons from traditional healers and indigenous medicine. These include the fact that many patients suffer from no/minor disease. They need to understand that the illness experience dominates patient reality. Consequently, physicians need to appreciate that the sole focus on disease and cure undermines illness experience and the need for healing.While traditional healers are effective in treating illness, they may less frequently influence the course of the disease. On the other hand, modern medicine and physicians can potentially treat both illness and disease. Doctors need to elicit patient perspectives about the illness, its impact on their life and their expectations. They should present biomedical perspectives as an alternate reality without claiming exclusivity. They must negotiate a treatment plan keeping cultural issues in mind. Health care is often less than satisfactory and treatment less effective when only disease is treated rather than when both disease and illness are managed together. Poor compliance, poor clinical care and medico-legal problems are often due to discrepancies between patients’ and doctors’ views of clinical reality.Many problems presenting to doctors are now viewed from a specialist perspective. The progressive medicalisation of distress has lowered thresholds for the tolerance of mild symptoms and for seeking medical attention for such complaints. Patients visit general practitioners and physicians when they are disturbed or distressed, when they are in pain or are worried about the implication of their symptoms. However, the provision of support currently mandates the need for medical models, labels and treatments to justify medical input.The divergent frameworks employed to view the clinical reality of disease or illness artificially forces the divide. There is a need to view disease-illness issues through alternating medical and patient lenses in order to see the full picture. Both the disease and illness perspectives are partial truths and need to be managed simultaneously for cure and/ or for healing. Rapid alternation between the two frameworks and perspectives will result in the delivery of holistic care.Doctors need to accept multiple approaches to restoring health and should encourage the use of diverse strategies to restore health and improve functioning. The disease-cure and the illness-healing models are part-perceptions of the whole and result in a gap in communication between doctors and their patients. This seems to be made worse by medical technology widening the gap between what patients seek and what doctors provide, causing dissatisfaction. Good doctors know the difference between disease, illness, healing and cure. They also know how to manage them.(Professor K.S. Jacob is on the faculty of the Christian Medical College, Vellore.)

1 comment:

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