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Nowhere to seek pain relief

IN AGONY—Daudi and other patients wait for treatment

TENESI —We cannot conduct regular home visits

Patients in need of palliative care are living the last days of their lives in anguish in the midst of challenges such as dwindling medical support and few health facilities and workers. YOHANE SYMON lays bare such suffering, which is not sparing children.

For over three years, Aisha Daudi, 31, from Iputi Village, Traditional Authority Jalasi in Mangochi District, limped from one traditional doctor to another in search of a cure for her legs, which were swelling and aching.

The visits did not bear any fruit. Her condition kept worsening. She and her relatives were convinced that she had been bewitched.

As the legs continued to swell, sores began to develop on some parts. They grew into huge wounds, which impacted her ability to walk.

Her second-hand clothes business also collapsed.

“I was living on a deathbed,” Daudi says.

In October 2017, her condition worsened and she was taken to Jalasi Health Centre, from where she was referred to Mangochi District Hospital. She was diagnosed with cancer.

Strangely, the diagnosis was a sort of relief to the suffering woman.

“I was happy when I finally learnt that I had cancer because I thought I would now get the which sometimes makes her feel death would be a better relief.

She has to travel to Mangochi District Hospital every month to access chemotherapy, the drug treatment that uses powerful chemicals to kill fast-growing cells in the body.

However, the unavailability of drugs at the hospital is another challenge for her and other patients who require palliative care and treatment.

Daudi explains that, last year, some patients in the lakeshore district stayed for over four months without being assisted because drugs were not available at the facility.

“It was a difficult situation for us considering that we depend on drugs, especially Morphine, to kill the pain which we go through every day. In the absence of drugs, doctors were advising us to purchase some medication from pharmacies or use herbs,” she says.

Those with some money or the opportunity to borrow it, like her and Isah Bisani—who has a five-year-old wound on his right leg—had to spend a minimum of K8,000 on buying alternative drugs to ease the pain.

“This money is a lot to most of us. Imagine living for six months with pain. Some of us have plunged ourselves into unplanned debts in our quest to access drugs,” Daudi explains.

Mangochi District Hospital holds palliative care session twice every week, hence every patient has to visit the hospital a day before to have his or her blood samples collected before being treated the next day.

This means the patients must visit the hospital twice in a space of two days, which Bisani said is a strain on resources.

“We have people who come from remote areas who cannot manage to come in a space of two days. So they come here, have their blood samples collected, then sleep anywhere within the facility waiting for treatment the next day,” Bisani says.

He adds that almost all patients seeking palliative treatment are not on admission, such that they have to look for their own food whenever they are at the hospital.

“For instance, we have been here waiting for treatment since morning but we have not been provided with food although other patients are getting food rations from the hospital. As a result, some patients who cannot afford transport and food have stopped coming,” Bisani says when we find him at the district hospital.

Mangochi District Hospital attends to about 80 patients with palliative needs every week. The figure is similar to that of patients that are attended to in Machinga, Balaka, Salima and Kasungu districts.

However, numerous challenges which health facilities face compound miseries for most palliative patients in the country.

For instance, Mangochi has only five facilities which handle patients who need palliative care Coordinator for Palliative Care at Mangochi Hospital Cecilia Tenesi says the problem of inadequate drugs means patients live painful lives.

“By definition, palliative care involves providing support to patients with life-limiting illnesses so that they die peacefully. But we normally fail to meet this obligation because of inadequate resources, including lack of essential drugs. We cannot conduct regular home visits because of resources,” Tenesi says.

Apart from inadequate facilities, patients with palliative needs face another challenge; that of inadequate medical personnel, which makes them to stay for long periods without being attended to when they visit health facilities.

The majority of people who need palliative care are also People Living with HIV and Aids (PLWHA). Most of them have cancer and open wounds that do not heal.

In 2002, Malawi introduced a palliative care approach for PLWHA, as advocated and recommended by the World Health Organisation (WHO) to, among other things, facilitate the positive impact of antiretroviral therapy among PLWHA.

Achieving the palliative care goal requires nurses to care for patients physically, socially, psychologically and spiritually, but also to support the caregivers who provide support to PLWHA at home.

However, trends in most African countries such as Malawi force patients to spend a lot of money on self-support because governments do not have readily available resources.

This, according to Palliative Care Association of Malawi President Lameck Thambo, is an indication that palliative patients in Malawi are living in agony as they wait for death.

Thambo says WHO estimates that one percent of each country’s population needs palliative care. This means that around 1.8 million Malawians need palliative assistance.

However, Thambo says failure by the government to make the services accessible is denying most Malawians a chance to be relieved of their pain.

For instance, Thambo says, Malawi has only 108 healthcare facilities which look after people with palliative needs.

“Out of these facilities, 29 are district government facilities. This number is on the lower side to cater for the needs of around 1.8 million Malawians. We need to have more facilities to reach a stage where palliative care can be a reality,” Thambo says.

He further discloses that, last year, only 48,386 people, of whom 8,314 are children with palliative care needs, were assisted in the 108 facilities across the country.

“But the majority of them ended up being frustrated because they were not given the drugs which help them to live peacefully. We, as a country, have been facing a shortage of Morphine, which is the most trusted drug for palliative patients,” he said.

Out of 48,386 palliative care patients who visited hospitals in 2020, Thambo says only 9,302 were provided with the much needed drug.

“The rest were turned back because there were no drugs in the hospitals. Children are living with pain out there. Adults are also struggling with pain out there. We need our government to seriously look into the plight of our members because a lot of them are dying in pain,” he says.

At the moment, there seems to be no hope in sight that the drug situation will improve any time soon as most district hospitals struggle with funding issues.

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