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"Going beyond the call of duty"
The
Star (www.thestar.com.my)
(03/12/06)
THREE to four patients are diagnosed as HIV+ each week at the Seberang Jaya
Hospital in Penang. No matter how much or how little they know about the
disease, all the patients have difficulty coming to terms with their
infection. They are almost always in denial and despair when they meet nurse
Jubaidah Bee Nagoor Pitchay at her clinic.
“I try to explain to my patients what being HIV+ means as clearly as I can,
so they understand. My patients are from all walks of life, but many are
women who are detected to be HIV+ through prenatal screening. Many patients
are heterosexuals.
“They come to me depressed; some are even suicidal. They are often surprised
when I tell them that there is treatment available for HIV/AIDS,” relates
Jubaidah, better known as Kak Ju, who is often the first healthcare worker
patients see after being told of the diagnosis.
Haunted by images of skeletal patients dying of AIDS, they often find
Jubaidah’s calm and clear explanation reassuring, especially because they
can rely on her to provide them with accurate and useful information about
treatment.
“Patients like her because she is professional and non-judgemental, and she
respects them,” says infectious disease consultant Dr Chow Ting Soo who
works closely with Jubaidah.
An important part of her job is building rapport with her patients and their
family, and gaining their trust. She strives to remove the stigma of
HIV/AIDS by discussing it matter-of-factly, like it is any other disease.
Many patients and their family members have a hard time grappling with the
ways a person becomes infected with HIV, but Jubaidah always advises them to
seek forgiveness from God and to move on.
Her counselling is a combination of giving practical information, gentle
urging and compassionate acceptance.
Counselling the patient’s family members is also important. Jubaidah says
she has been touched by how families have rallied around some of her
patients, like the 70-year-old farmer who continues to plant vegetables to
pay for his son’s medicine.
Then there’s the father who once disowned his son but has turned into his
strongest supporter since Jubaidah talked him into forgiving his son’s past
misdeeds.
“When people get correct and accurate information about HIV/ AIDS, they are
able to overcome their fears,” says Jubaidah, who started treating HIV+
patients in 1997.
Back then treatment was expensive and limited but the government has since
taken steps to reduce the cost of antiretroviral drugs and is now providing
for free two out of the three drugs HIV+ patients need.
With the government subsidy, it now costs a HIV+ patient about RM220 per
month to be on treatment.
“I used to lose patients because they could not afford the medicines, or
sometimes they delayed treatment. These days, most patients can afford to be
on treatment. If they cannot, we try to get them financial aid,” says
Jubaidah.
Unfortunately for most HIV+ patients, dedicated counselling nurses like
Jubaidah are not present in many of our clinics and hospitals. Only Hospital
Kuala Lumpur has a trained counselling nurse who handles just HIV/AIDS
cases. In other hospitals, counselling nurses have to also attend to other
patients.
The biggest challenge in treating HIV/AIDS is getting patients to come
forward.
Sometimes a disapproving look or a sharp retort from a doctor or a nurse is
it takes to deter patients from seeking medical treatment.
There are now about 70,000 reported HIV+ cases in Malaysia. Drug sales, as
of early this year, indicated that less than 5% of those infected are
seeking treatment.
When infectious disease consultant Dr Chow Ting Soo started the HIV/AIDS
clinic at the Sebarang Jaya Hospital in 2002, she knew that a dedicated
counselling nurse would be pivotal in providing a supportive environment.
In 2002, there were only about 50 patients on treatment at the Seberang Jaya
Hospital. The number has since increased to 300.
“Doctors used to do the counselling for HIV+ patients, but we are seeing
more and more patients. We don’t have the time to counsel patients, and a
counselling nurse acts as the link between the doctor and patient. We were
fortunate because Kak Ju volunteered to be the counselling nurse. She is
enthusiastic about learning, and is proactive in picking up the skills
needed,” says Dr Chow.
“More importantly, she genuinely enjoys her work — and that is not something
that can be taught.”
Winning the Dr Siti Hasmah Award was unexpected, Jubaidah says. For her,
nursing is a vocation she has devoted her life to and there are no off-duty
hours.
She treated other pilgrims for minor ailments when she was performing the
Haj and once tended to a dehydrated passenger on a long-haul flight. During
weekends, she gives talks about HIV/AIDS and conducts counselling sessions
in drug rehabilitation centres.
“I go to lots of conferences and seminars to equip myself with knowledge. We
also set up a network between the hospital and NGOs such as the Family
Planning Association, the Community AIDS Services Penang, the Buddhist
Association, and Zakat. We also work with pharmaceutical companies so their
representatives can talk to the patients about the drugs they are taking,”
she says.
“Patients throw a lot of questions to us, so we have to know the answers.
But we must also not give them false hope.”
Seberang Jaya Hospital has one of the highest compliance to treatment, and
Jubaidah says this is because of the strong supportive environment there. A
peer support group has been set up so HIV+ patients can turn to their peers
for help.
Jubaidah also trains nurses at the hospital, and she admits that not all of
them have overcome their fear of treating HIV+ patients.
“Some nurses are still ignorant and afraid. But we lead by example, do what
we preach. When these nurses see the way we treat the HIV+ patients, they
will realise that there is nothing to be fearful of.”
Jubaidah’s success in winning the Dr Siti Hasmah Award will definitely
inspire them on.
o The Dr Siti Hasmah Award is presented biennially by the Malaysian AIDS
Council to recognise and highlight outstanding contributions by individuals
or organisations to HIV/ AIDS work in Malaysia.
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