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Each
one of us can recount unpleasant encounters with the medical
profession. We are not talking just about long waits, all-too
brief consultations, the reluctance to answer questions, or the
lack of respect for patients’ concerns. There are prescriptions
of expensive drugs or therapies, giving rise to the suspicion that
the doctor is more interested in maximising profits than in the
patient’s benefit. Most of the time the patient gets better
anyway, and forgets about the bad experience, perhaps changing
doctors without complaining to the first one. But sometimes things
go wrong. It could be because of the disease; it could be that the
treatment was proper but given without informing the patient of
its risks and limitations; worst, improper treatment could have
caused illness and even death.
While
the rich are more able to get ‘good treatment’, the
essentially unequal nature of the doctor-patient relationship, the
absence of any real professional self-regulation, the growing
commercialisation of medical practice and the overall nature of
the health industry – all these combine to ensure that no one is
really immune to bad experiences with doctors.
How
common are these experiences? The occasional press report of
negligence is more a matter of chance than a measure of the actual
level of improper care, or even the public perception of
negligence. And horror stories in the press are more often about
the five-star hospitals, perhaps because the better off have
easier access to the media, and are also in a position to launch a
legal battle. Such reports are less likely from public services.
The
poor routinely encounter rude health staff. They are forced to pay
for irrational and even dangerous drugs. They may be put off from
even seeking care by the very cost of these services. But they
rarely complain because they cannot afford to do so. Moreover,
neither public perception nor press coverage of negligence is
indicator of the actual extent of negligence or inappropriate
care. That remains an unknown. Perhaps what we read about is only
the tip of the iceberg.
However,
there is a ray of hope in the horizon. A growing consumer movement
has questioned the attitudes and actions of the medical profession
and the health industry as a whole. The press has covered this
movement with reports documenting questionable practices,
unethical behaviour and outright medical negligence. The Supreme
Court judgement in the early nineties, that the medical
profession’s services were covered under the Consumer Protection
Act, came as a rude shock to a guild which had made nonsense of
existing mechanisms for self-regulation.
As
a result, today there are shock waves reverberating through the
medical profession. Many medical associations ask for professional
unity in the face of a common enemy – questioning patients.
“Don’t let them through your doors,” they warn. “Such
people are nuisances, they’ll only come back to harass you with
legal action.” “The fear of legal action will only force
health care costs up, because now we must protect ourselves by
testing for every possible disease,” such doctors assert.
At
the same time, concerned members of the medical profession – and
allied disciplines – have long been concerned about the need to
change crucial aspects of health care delivery. They see the
increasing reports of negligence and unethical behaviour not as a
threat to their existence but an opportunity for the profession to
look within itself and alter its behaviour before it is too late.
The requirements of private insurance companies have added another
pressure to the need for some accountability in health care.
Yasmin
Tavadia and Medico Friend Circle
One
of the landmark cases in the movement for accountability in health
care dates back more than a decade. Yasmin Tavadia’s father died
following a mismatched blood transfusion in a private Mumbai
hospital. In the course of an investigation, it was revealed that
the doctor supervising the transfusion was not a registered member
of the Maharashtra Medical Council – in fact, this person had a
degree in another system of medicine, but had been hired by the
nursing home anyway. Indeed, surveys of nursing homes found that
most nursing homes employed unqualified staff (who could be paid
less).
Further,
as Dr SP Kalantri notes in an editorial (Kalantri SP., Time to
Act?, Issues in Medical Ethics 2002; X: 40), most
establishments did not have the necessary space, equipment or
infrastructure, and they kept no medical records. Not one of them
was registered with the appropriate authorities. In 1991, public
interest litigation was filed by Tavadia and the Mumbai group of
the Medico Friend Circle. As a result, the High Court asked the
Mumbai Municipal Corporation to set up a committee to bring the
Bombay Nursing Homes Registration Act (dating back to the 1940s)
up to date.
This
was in 1991. Eleven years later, a draft of the amended BNHRA (now
to be called the Maharashtra Clinical Establishments Act) will
soon be considered by the state legislature. Credit must be given
to the voluntary organisations and activist groups which
participated in the drafting of these amendments. Representatives
of women’s groups, health research and activist organisations
and consumer bodies came together with professional associations
which were present at various stages of this process.
Of
course, there are other influences which have pushed the process
forward. The World Bank is supporting efforts to standardise
private health services to make it easier for the private
insurance sector. Still, there is a critical role played by
people’s organisations.
The
discussions covered a range of issues related to accountability in
health care. Some of them: the requirement that medical
establishments register and submit to regular inspections at the
risk of punishment for non-compliance, minimum standards for
infrastructure and human power, the right to information on fee
structures and other expenses, the right to receive care, the need
for record keeping, and patients’ access to health records. In
short, accountability to the public.
Women
Centred Health Project
Another
kind of negotiation was initiated by Women Centred Health Project
(WCHP), a six-year-old collaboration between the Brihanmumbai
Municipal Corporation’s (BMC) public health department and the
Baroda-based non-governmental organisation SAHAJ. WCHP works in
two of BMC’s 23 wards. The WCHP aims to improve the quality of
services provided through the municipal health system. This is
important because public health services are used by the poorest
of the poor. Towards this end, it organised a series of workshops
for staff at the various health services, as well as senior
officers in the municipal health system, on quality assurance –
or the guarantee of a certain level of care. Quality assurance was
accepted as a valid concern of the municipal health services. One
of the outcomes is that the BMC is considering adopting a
Patients’ Charter and a Quality Assurance Policy for municipal
health services – something of a revolutionary demand in this
age of cutbacks. Other suggestions being considered are a
complaints redressal mechanism, a quality control cell, a rating
system for facilities, and the addition of specific quality
assurance indicators.
Of
course, it would be important to find out how well this effort has
progressed. Did the suggestions get implemented? Did they get
evaluated? This is just a beginning.
Forum
Against Sex Selection and Sex Pre-selection
A
third example is of voluntary efforts to regulate the use of
diagnostic techniques to prevent their misuse for sex selection.
This dates back to the 1980s when the Mumbai-based Forum Against
Sex Selection and Sex Pre-selection launched a campaign against
the use of amniocentesis with sex selective abortion. This led to
legislation, first in Maharashtra state and later in the whole
country, to regulate the use of these techniques. However, once
passed, the legislation was generally ignored by the medical
profession. The unethical – and now illegal – practice just
went underground.
The
activist groups did not give up. More recently, a public interest
litigation in the Supreme Court led to directives to state
governments to implement this legislation. While it is being
acknowledged that the law has flaws in the language, as well as in
its implementation, it is clear that people’s opposition has had
effect. It also suggests that such campaigns can benefit from
multi-pronged efforts – informing the public of the ethical and
practical consequences of such practices, maintaining a dialogue
with the medical profession, lobbying with the government, as well
as pushing for legal action when needed.
Forum
for Medical Ethics Society
As
the distrust in the medical profession grows, there is also a
great sense of frustration, a feeling of helplessness. Few of us
have the energy or the resources to fight individual cases at the
medical council, or to go to court. It is important to take our
grievances to public forums. One such forum is provided by the
Forum for Medical Ethics Society, an organisation of health
professionals as well as people from other sections of society,
joined by a shared belief in the importance of ethical medical
practice. The Forum’s journal, Issues in Medical Ethics, seeks
to provide a platform for dialogue on this subject.
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