http://bmj.com/cgi/content/full/326/7402/1295

BMJ  2003;326:1295 (14 June)
 

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Collections under which this article appears: Medicine in Developing Countries International health Patient - caregiver relationships Patients' cultures

Developing world

Seen and not heard

Sanjay Kumar, freelance journalist¹

¹ New Delhi 110026, India skrpulse@yahoo.com

Sanjay Kumar interviews Dr Arun Bal, patients' rights campaigner in Mumbai, India, who is a founder member and former president of the Association for Consumers' Action on Safety and Health (ACASH), founder member of the Forum for Medical Ethics, and former editor of Issues in Medical Ethics. After qualifying in surgery, Dr Bal entered private practice in 1977 and for 18 years (1979 to 1996) regularly provided his surgical skills in areas of rural India. Specialising in the diabetic foot for the past 15 years, he is president of the Diabetic Foot Society of India

SK: What are the main concerns, obstacles, and challenges facing patient empowerment in India?

AB: The main concerns are rampant commercialisation of the medical profession, indiscriminate use of high technology, and absence of any self regulation. The statutory regulation is not working. In fact, one finds that the patients are at the receiving end. We receive complaints from patients, for instance, that cataract surgery is advised with phacoemulsification technique when independent examination finds no cataract. The main challenge is to improve the doctor-patient communication, which at present is one sided.

SK: How does the developing country situation differ from that in the developed world in your view?

AB: In the developed world there are patient rights groups with a strong base, and the general awareness level is very high. The statutory controls as well as self regulation function better. There is regular monitoring of technology use. In the United Kingdom, the General Medical Council even has a system of monitoring doctors' professional competence. There is no such thing in a developing country like India.

SK: Where does the patient empowerment movement stand in India?

AB: At present there is really no concrete movement for patients' empowerment. The patient movement started really from 1992, when Consumer Protection Act (CPA) was applied to the medical profession. But it would be incorrect to call this as patient empowerment movement.

SK: To what extent do the patients in India have a voice of their own? How are they making themselves "heard"?

AB: The patients try to get their voice heard through the use of laws such as Consumer Protection Act or through media publicity. This is really a very unhealthy trend. The doctor-patient relationship has medical, ethical, social, and legal aspects. Owing to the skewed relationship between doctors and patients, the legal component overshadows all other components. There are no avenues to take care of patients' grievances in hospitals.

SK: What does the experience at the ground level say? Do you think consumer laws have empowered the patients'?

AB: We have handled some 300 complaints since 1992. We find the incidence of real medical negligence—which is legally possible to prove in courts—is only 3-5%. Even these cases are not easy to prove, and most of our cases are in various stages of appeal. Only one case has completed all stages of appeal in the past 10 years. This was a case in which a gynaecologist operated on a very obese patient weighing 130 kg for hysterectomy in a small nursing home when blood was not available. During the surgery the patient died on the operating table. The complainant (patient's husband) was awarded 700 000 rupees (£9175, €13 074) compensation.

SK: So, is litigation the solution?

AB: I feel that consumer laws are not really a solution for patients' problems in India. They only have a deterrence value. We find that most of the complaints received by us are instigated for professional rivalry by fellow doctors.

SK: In the era of globalisation, do you think patients' empowerment faces newer challenges?

AB: Globalisation is likely to make the situation more complex. Unethical drug trials by developed world agencies in the developing world are only one aspect. This will happen on an increasing scale. High tech medicine, which is difficult to try in the developed world with strict ethical guidelines and statutory control, is likely to be tried here. For example, newer angiography catheters, stents, newer vaccines and drugs, etc.

SK: Has the medical community risen in support of the patient's rights? What has been the record of private doctors, doctors' organisations, and the government?

AB: Most of the doctors' organisations have not spoken in support of patients. After the CPA was promulgated, there was hue and cry against it, and an adversarial atmosphere was created. The CPA was widely supported because of the failure of self regulation, denial of patients' rights, and rampant commercialisation, which led to patient exploitation. SK: One argument is that the patient is moving away from the "doctor knows best" attitude towards more of a consumerist model. Just how much do these arguments apply in a developing country?

AB: It needs to be realised that patients become consumers mainly as a reaction to lack of transparency in the medical profession and the failure of doctor-patient communication. The medical profession for generations is based on three pillars—compassion, competence, and confidence. Unfortunately over the past two decades these three pillars have been replaced by a single pillar—cash. Our organisation, Association for Consumers' Action on Safety and Health (ACASH), strongly believes that a patient cannot merely be a consumer and that faith in his doctor is necessary for the medical treatment.

SK: Has the communication between the doctors and patients broken down?

AB: Patients are very reluctant to file court cases against doctors unless there is extreme provocation. In 95% of complaints received by ACASH, the main component was "Doctors do not talk, explain, or discuss"—that is, communication failure.

SK: Do you give patients' more power by giving them more information? Is the divide between rich educated and poor uneducated people more marked as a result of those who have access to resources such as the internet, while others become even more disenfranchised?

AB: At ACASH we firmly believe in patients' right to information. We find that the patient who has access to the information or internet effectively uses it. A rural or uneducated patient is unable to exercise his rights, and 70% of India stay in rural areas. He tends to suffer in silence and usually accepts all side effects, mishaps, and complications as faits accomplis.

SK: How do you view the role of the Medical Council of India and the state medical councils?

AB: The medical councils—which are supposed to regulate the medical professionals at the central and state levels—are practically defunct. They have become "dens of corruption," as the Delhi High Court called them. The usual experience is that the councils do not function in an impartial manner, and patients do not get a fair hearing. These bodies have done tremendous harm to our healthcare delivery by making self regulation of the profession a farce, to such an extent where the patients and society have lost faith in the medical profession. These councils in their present form can never empower the patients. They are in fact anti-doctor and anti-patient.

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Collections under which this article appears: Medicine in Developing Countries International health Patient - caregiver relationships Patients' cultures

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