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Introduction
There
is sufficient evidence to show that anywhere between 70%
and 80% of clients, who attend the Voluntary Counselling
& Testing Centres (VCTC), in hospitals in India, are
referred either through the in-patient route or from the
out-patient department. In addition, most doctors expect
that their patients will be tested, if they require
ongoing treatment. Counsellors are given instructions
that they should get the consent from the patients, and
that the patients must consent to test under any
circumstance. This is a fine example of literal
translation of a concept, in this case informed consent.
 In
India informed consent means, "you may inform, I must
consent". Though the principles of VCT have
been adopted by the National AIDS Control Organisation (NACO)
as a critical step in addressing the impact of HIV in
India, these are barely adhered to in practice. This is
not surprising given that the context in which the VCT
is expected to function supports neither the patients
nor the healthcare providers. An analysis of
expectations of both patients and healthcare providers
in the prevailing context of communities and healthcare
institutions leads us to a conclusion that is as
inevitable as it is paradoxical:
a) Clients will resist mandatory testing, no matter what
terminology it is passed off under.
b) Healthcare providers will insist on testing, even as
they appear to agree to the VCT concept.
Under
these circumstances, we must initiate certain essential
processes before we drastically increase the numbers and
scope of VCTCs in the country.
Analysis
What
do clients want?
Essentially
healthcare seekers at the VCTCs have certain
expectations. These include:
Confidentiality
Because
stigma and discrimination continue to be very high, and
are largely unaddressed, clients face enormous problems
whenever confidentiality is breached. This can be both
within the healthcare settings as well as from
communities. Typically, the concrete outcomes of
discrimination can result in the following:
i) Loss of job / income
ii) Loss / conflict within family and friends
iii) Loss of respect and social standing
iv) Discrimination of children from community
v) Loss of homes / shelters
vi) Loss of property
vii) Loss of self-esteem / confidence.
A
quick reflection shows that these are the most important
parts of an individual's identity. Lack of
confidentiality in the context of HIV testing threatens
the loss of most of these elements, at one go. In
addition, it also burdens the individual with failing
health; poor access to quality treatment and serious
prospects of suffering and early death. Hence, it is
immediately obvious that if an individual perceives that
confidentiality regarding HIV testing is not maintained
at any level, he/she is unlikely to put himself/herself
to the risks of all of the above. Therefore, the
prospects of referred clients going underground, on the
one hand, and their not seeking voluntary testing, on
the other, is very high under situations where strict
maintenance of confidentiality is not possible.
In
most of the hospitals the truth is that confidentiality
is not maintained for a variety of reasons. These
include:
-
A sign board announcing "HIV Counselling &
Testing" or "Counselling & Testing for
AIDS"
-
Doctors insisting on receiving the positive results
and conveying the same to clients. In many places only
people testing negative are asked to meet the
counsellors, while the post-testing counselling is being
done by the doctors. This automatically separates the
positives and the negatives and allows scope for
identification.
-
In many other hospitals doctors ask counsellors to do
post-test counselling only for clients testing positive.
They are instructed not to deal with clients, who have
tested negative because of time constraints. Thus, a
patient immediately knows the status depending on
whether he or she has been advised to meet the
counsellor. This also provides a scope for
identification of test results by other people around.
-
In many cases, the test result is written on the OP
slip in different colour ink, indicating immediately
that there is something different, even to people who
might not be able to read. Within a very short time,
this is taken to be a symbol for having tested positive
for HIV.
-
In-patients are very often pointed out as having HIV
by healthcare workers, largely by doctors, either as
part of their teaching practices or as part of
instructions for nurses, etc. In this way,
relatives/friends of the patients, who are visiting,
have access to the information. So do people in other
beds.
-
Several hospitals practice segregation of patients in
separate wards. This immediately breaches
confidentiality.
-
In almost every hospital, most of the cleaners, ayahs,
hospital attendants and other staff, other than doctors
and nurses, are also aware a person’s status. This is
another common route for breach of confidentiality.
-
In several cases, positive results of clients are
disclosed to family members without the consent of the
client.
The
other expectation of the clients is with reference to
the nature and quality of treatment. Patients
expect that they will be treated without discrimination,
and that they will be provided adequate and appropriate
treatment, for as long as necessary. Currently, this is
not possible on both counts for the following reasons:
Fear
of infection:
Though statistics of infection due to accidental
exposure is only 0.3%, most healthcare personnel are
afraid of accidentally acquiring HIV infections. This is
very significant in view of the fact that in many of the
hospitals, healthcare personnel are unaware of the
availability of PEP and procedures to deal with
accidental needle prick injuries. They are just being
told that in case of a needle prick, they should get in
touch some designated person. Even where people are
aware of the availability of PEP, they often do not know
how to access it at short notice. No specific attempts
seem to have been made to train persons dealing with HIV
patients.
Lack
of universal precautions:
In most government hospitals, doctors, nurses and
other healthcare staff continue to work without adequate
gloves, sterilization equipment, efficient waste
disposal methods, and other resources required for
practice of universal precautions. Many healthcare
personnel report working without gloves, even with
people known to have HIV.
Training
in self-care:
Most healthcare personnel appear to have received little
or no training in preventing infections to self. Where
trainings have been held, these have addressed care of
HIV-related systems, rather than safeguard oneself.
Training
in HIV management: Only a
few people actually taking care of patients have been
specifically trained in HIV-related management. Where
training is done, it tends to be repeated only for
specific sets of healthcare providers, leaving a vast
majority non-sensitized. Inadequate experience in this
area, coupled with a reluctance to take on additional
burden, is seen as factors responsible for lack of
adequate skills.
Manpower:
Most government hospitals see large number of
clients every day. The additional burden of HIV clients,
particularly since these people are not being treated at
private hospitals increases the amount of work that they
have to put in. Decision not to recruit additional staff
in any category has further compounded their problems.
The sheer caseload per staff appears to be increasing
and will soon grow out of proportions. There is, not
surprisingly, a growing resentment towards taking on
additional duties, without any of their requests for
augmenting or infrastructure being considered.
Drug
supplies:
Many doctors, in many hospitals, complain that drugs are
not adequately available, even for treatment of
opportunistic infections. Thus, they feel that it is
unfair to expect them to treat clients when even drug
supplies are not maintained.
These
above issues clearly point out the situation that
healthcare providers are placed in, and largely
contribute to their insistence on "mandatory
testing", even if they call it
"voluntary".
Thus,
currently, it seems obvious that clients will resist
testing, on the one hand, and doctors will insist on
testing, on the other, unless concerns of both parties
are met.
Under
these circumstances, the VCT programme cannot hope to be
effective unless and until these issues are addressed as
a priority.
Conclusion
While
all these will be ongoing processes, measures to address
them will have to be initiated immediately. Fortunately,
these can be done in the following ways:
a)
Addressing clients' fears:
All
community-related programmes must have a component of
intervention to stigma and discrimination, as an
integral part of the project. This component will
specifically address community-related discrimination,
with respect to the different areas, as identified
earlier. This may appear to be a project in itself, but
unless it is twined with all existing targeted
interventions, it will not yield the effects that we are
looking for.
b)
Addressing concerns of healthcare workers:
In the short term, issues of PEP, universal precautions,
and training for self-care of healthcare workers, are
critical. Sensitization training on issues of sexuality
and human rights can be useful. Technical training to
build skills to cope with HIV-related treatments is the
next step.
c)
Government-corporate partnerships:
Exploration
of methods to augment manpower as well as infrastructure
capacity will have to start immediately. Different
options can be considered, including those of twining
the private resources with public hospitals - example:
asking private hospitals and healthcare facilities to
work together with government set ups in
government-corporate partnership.
d)
Government-NGO partnerships:
Along the model of the community care centers, which the
national programme has entrusted to NGOs, they can also
be funded to recruit doctors, who can be deputed to
government hospitals on a contractual basis. This allows
the government to access doctors, up until the time it
has the resource to do so, without absorbing them as
full time staff.
e)
Drug supplies:
In the absence of ARV, at least regular, adequate
supply of drugs for treating opportunistic infections
has to be in place. Fortunately, it is already provided
for in the budget, and will now have to be
operationalized far more smoothly, than it is currently
being done.
f)
Finally,
we are not justified in asking patients to seek testing,
or doctors to treat patients without ensuring that their
concerns are met. If the principle of VCT has to be
realized in practice, these will be some of the first
steps that will help it do so. If we cannot provide
these minimum facilities for both patients and
healthcare workers alike, we must not seek to expand our
VCT services.
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