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Oct-Dec2002-10(4)
DISCUSSION
Unethical practices
Joy Abraham
A married woman was tested for HIV in a medical
check-up prior to tubectomy. She tested positive. The result was conveyed to the
aunt who accompanied her, and the operation was cancelled. The aunt spread the
news that the woman had 'AIDS' to relatives and neighbours. People stopped
coming to their house, and those who did refused to drink even water there. When
the husband confronted the aunt about this changed behaviour, she said, "Your
wife has AIDS, that devil (the wife) will die and also take you along with her."
Timely support from a neighbour, who knew of services for HIV, helped them to
recover from the shock and to seek support.
A pregnant woman believed to be from a neighbouring
country tested HIV positive on a routine medical check-up. The doctor not only
denied her further treatment but also revealed her HIV status to a leader of the
slum community, where she lived. Community leaders got together and forced all
the men and women from that linguistic group to leave their slum. The leaders
claimed that these people were 'illegal migrants' engaging in 'prostitution' and
'spreading AIDS' in the area.
Over the last 20 years, HIV/AIDS has tested society
in general and health care providers in particular. It has exposed fears,
prejudices, double standards and failures in the social and medical response to
the needs of people living with HIV/AIDS (PLWHs). Doctors have been criticised
for their apathy and discrimination, their unethical practices responding to a
medical problem which requires support from the health sector. Countless
reports, from the denial of basic medical services to the merciless exploitation
of PLWHs at the hands of health professionals, call into question the level of
awareness about this disease as well as the very values and ethics guiding the
medical profession. This article is based on the experiences shared by PLWHs and
attempts to highlight some of the ethical issues around current practices in
HIV/AIDS treatment and care. However, it is not intended to ignore the good work
being done by many medical practitioners across the country.
Refusal to treat
Legally, doctors in public hospitals may not refuse
treatment to any patient, while doctors in the private sector are not obliged to
provide treatment except in an emergency. However, experience suggests that the
majority of doctors in both sectors refuse to treat people with HIV, mostly due
to baseless fear and ignorance about the disease. There are countless instances
in which patients are denied admission, not provided proper attention and care,
and discharged without surgery and treatment. In public hospitals, patients with
HIV have been discharged in critical condition; they have been denied services
and even told to go back to their villages. Private hospitals explain their
refusal to treat by citing the risk of infection to health care providers,
non-co-operation of staff, fear of losing other patients, inadequate
infrastructure (like separate delivery tables) and the high cost of universal
precautions. These arguments are made even though it is well known that the risk
of other infections such as Hepatitis B and the risk of HIV infection during the
window period necessitate the practice of universal precautions.
Private hospitals often refer PLWHs to government
hospitals saying that they will get special treatment and medicines there. These
referrals are often incomplete, as patients are not directed to the right
department or given information on what services they can get from there. In
private health care centres, many PLWHs find doctors conducting even
non-invasive examinations with gloves and masks, when there is no need for this
practice. Some limit the medical examination to listening to the patient and
prescribing medication, and charge double for this service. Though it is usually
doctors who are held responsible for discriminatory practices, patients
experience such responses from nurses, ward boys and 'ayahs'.
Unethical testing for HIV
Guidelines for HIV testing state the need for pre-
and post-test counselling, and also require that the person's informed consent
be taken before testing. These requirements are made because of the emotional,
psychological and social aspects of HIV/AIDS. However, in most cases HIV testing
is done without the consent of the patient and the results are disclosed without
any sensitivity. This sends people into shock and denial, and sometimes even
triggers attempts at suicide. Even healthy people with an HIV positive result
are told that they have 'AIDS' and 'will live only six months' or 'two years'.
Results are often disclosed not to the patients, but to their relatives or
friends. No thought is given to the implications this could have on the lives of
the individuals and families concerned.
Health care providers have a right to break
confidentiality only in certain, specific, circumstances, such as when
disclosure is for the patient's benefit (to another doctor treating the
patient), to protect partners/spouses, or under legal requirements. In reality,
most disclosures violate ethical guidelines and patients' rights. HIV test
results are available to health care workers at all levels. Disclosure of a
positive result is often made not to the person infected but to the parents,
friends and relatives.
Other troubling practices
Even now health practitioners give people incorrect
or incomplete information about HIV/AIDS. Unfortunately, the profession does not
give serious attention to the need to update one's scientific knowledge and
skills.
Patients are not assessed for the appropriateness
of anti-retroviral therapy. They are not counselled on its duration, costs, side
effects and the monitoring requirements. Patients are asked to undergo expensive
tests without ascertaining whether they can afford them, or the drugs. When
anti-retroviral drugs are prescribed without taking patients' financial position
into consideration, patients are forced to stop the drugs when their savings are
exhausted. This leads to their pauperisation - and the development of new
resistant strains of the virus.
PLWHs are used for medical research often without
their knowledge and consent. There are instances in which PLWHs were admitted to
the hospitals and discharged after the research was completed.
High fees are charged (almost three to five times
more) from PLWHs for conducting deliveries and surgeries. Some practitioners
offer 'magic cures' claimed to be based on Ayurvedic and herbal medicines - and
charge exorbitant amounts for these.
In short, despite our improved knowledge of
HIV/AIDS, and the introduction of anti-retroviral therapy, PLWHs continue to
experience such unethical medical practices.
One cannot expect drastic changes in the existing
scenario, but hope is offered by the fact that more and more doctors are coming
forward to provide services. Experience suggests that Continuing Medical
Education (CME) programmes focusing on HIV/AIDS will result in provision of
better services to PLWHs, based on patients' needs and rights.
Continuning medical education
Center for Development Initiatives is a
non-governmental organisation working on sexual and reproductive health issues,
with under-privileged communities in the outskirts of Mumbai. As part of this
work, it organised a series of CME sessions among doctors in the project area,
involving expert medical practitioners and consultants from public hospitals in
Mumbai. The topics covered included HIV/AIDS basic science, universal
precautions, opportunistic infections, anti-retroviral therapy, counselling,
human rights and ethical issues. Participants reported that the programmes
improved their ability to deal with patients. They could provide appropriate
counselling, they were more confident when treating patients, their attitude
towards PLWHs had changed, and they made conscious efforts to take universal
precautions irrespective of the patient's HIV status. The programmes gave an
opportunity for them to interact with experts, clarify their doubts, and learn
new skills in communicating with and treating patients. At the request of doctor
participants, the programme was later extended to cover nurses in private health
care settings.
Conclusion
The majority of PLWHs will require medical services
at various points in the course of the disease. Medical practitioners need to
recognise their role in providing services to PLWHs adhering to the profession's
ethical guidelines. Considering that more than 60 per cent of the population
seeks medical help in private health care centres, the responsibility of
treating PLWHs cannot be relegated to public hospitals alone. It must be
accepted that HIV is often diagnosed first by a private medical practitioner.
HIV/AIDS provides health professionals another opportunity to look at their attitudes to patients and to change them in line with the profession's noble aim. At the same time medical associations and agencies working for HIV/AIDS must invest in involving more medical practitioners in the treatment and care of PLWHs.
HIV/AIDS provides health professionals another opportunity to look at their attitudes to patients and to change them in line with the profession's noble aim. At the same time medical associations and agencies working for HIV/AIDS must invest in involving more medical practitioners in the treatment and care of PLWHs.
Joy Abraham, Center For Development Initiatives, B-307 Nirmal Park No.3, S V Road, Navghar Road, Bhayandar East, Thane District, Maharashtra 401 105. Email:annajoy@vsnl.com
FILLER
Exploiting the desperate
Patients with HIV are desperate for a cure; many of
them have spent their life savings on various 'cures' advertised in the press,"
writes Ruth Kattumuri, who has worked with various development projects in South
India (r_katts@yahoo.com). The medical
profession cannot ignore such alternative treatments, but their efficacy should
be tested "without using patients as guinea pigs," she adds. Unfortunately, the
medical profession is not seen as caring. "Patients with HIV are routinely
abused publicly by doctors. It is important that doctors be trained adequately
to deal maturely and sensitively with such patients."