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Silent Struggles: Unravelling the Hidden Trauma of Cancer Patients Amidst Language Barriers and a Lack of Palliative Care

14 November 2023 by Limpho Sello

In 2018, there were 1 888 cancer cases in Lesotho. Credit: World Health Organisation.

As Lesotho continues its ongoing battle against cancer, the enduring scars left on patients and survivors persist, underscoring the critical need for quality palliative care services.

A 2020 Country Cancer Profile by the World Health Organisation (WHO) indicates that there were 1,888 cancer cases in Lesotho in 2018. At 23 percent, cervical cancer recorded the highest incidence rate, followed by Kaposi sarcoma at 14 percent, and breast cancer at eight percent.

In 2021, WHO further reported a 49.9 per 100,000 cervical cancer rate amongst Basotho women.

The dataset was extracted from WHO’s Cervical Cancer Report on Lesotho.

To address the scourge of cancer, the government of Lesotho reportedly spends M112 billion a year on cancer treatment in South Africa and India.

However, with the construction of the country’s dedicated cancer facility set to resume soon, a crucial gap remains in addressing the comprehensive healing needs of cancer patients and those with chronic conditions.

WHO Country Representative, Dr Richard Banda, emphasises the urgent need for concerted action to scale up access to quality palliative care services.

While Dr Banda quickly admits that palliative care is not the last resort, he points out that it should be integrated early in the care of people affected by life-threatening conditions.

He emphasises that palliative care prevents and relieves suffering through the early identification, correct assessment, and treatment of pain and other problems, whether physical, psychosocial, or spiritual.

“We, therefore, have to work together to bridge the gaps in our healthcare system and ensure that palliative care is not a luxury but a universal right,” Dr Banda said.

He adds, “Delivery of quality palliative care is a moral imperative and a human right.” He states that the World Health Organisation resolved that palliative care is an ethical responsibility of health systems.

“Quality health services and palliative care are inseparably linked; both are vital for the achievement of universal health coverage (UHC).”

In the last few decades, according to Tonny Abdul Mwaburry, the increasing upsurge in HIV/AIDS and non-communicable diseases such as heart disease, stroke, and cancer, as well as ageing populations, has given rise to the need for palliative care services globally, including Lesotho.

Despite the established need, Mwaburry says “available literature indicates gaps in palliative care development and integration in Lesotho.”

Hidden Trauma

As the vibrant sunshine bathes Lesotho’s capital, Maseru, a pivotal event unfolds, casting light on the profound challenges faced by individuals battling life-threatening illnesses in this picturesque mountainous country.

Among the attendees of the commemoration of Palliative Care Day in Maseru is a 50-year-old breast cancer survivor. Lesotho has an eight percent breast cancer incidence rate. Despite embodying strength and resilience, ‘Maatang Chaka candidly recounts the pervasive pain, relentless frustrations, and poignant losses she endured.

Chaka’s journey began in 2011 when she first experienced agonising pain in her breast. Seeking relief, she sought medical attention and received painkillers before being referred to Lesotho’s only tertiary hospital – Queen Mamohato Memorial Hospital (QMMH).

A year later, in February 2012, the trajectory of her life took a drastic turn when she received the devastating news of a mobile lump in her breast. The ensuing months unfolded as a harrowing chapter, culminating in a mastectomy in January 2013, a pivotal moment that altered the course of Chaka’s life.

“And after that, when the biopsy was done, I discovered that I have stage three breast cancer,” Chaka shared her journey with breast cancer.

In Lesotho, cancer patients are transferred to Bloemfontein in South Africa or India for treatment. Earlier this year, Health Minister Selibe Mochoboroane bemoaned these transfers, saying they weigh heavily on government coffers.

Minister of Health Selibe Mochoboroane. Credit: Pascalinah Kabi.

According to Mochoboroane, the government spent M220,000 to treat one cancer patient in South Africa in 2022. Previously, the Ministry of Health respectively spent M114,000 and M140,000 for a 2015 and 2016 treatment in South Africa.

Lesotho is forced to refer cancer patients to South Africa and India because it lacks equipment and specialised human resources, according to Mochoboroane.

“This means that the imported services through referrals have become more expensive for the country. This leads to a point where the country is overburdened by referrals,” Mochoboroane said.

But, for patients like Chaka, the referrals present untold stories of hidden trauma that cancer patients grapple with.

“I was confused, and what made things even worse was the language barrier between me and the doctors. Only their body language indicated that something was wrong,” she said. “Throughout this ordeal, I did not undergo any pre-counselling sessions to prepare me for what was happening.”

Added to Chaka’s ordeal, shared by many cancer patients in Lesotho, is the long travelling distances between their homes and treatment in South Africa or India. And, in some cases, patients came back to Lesotho without treatment.

“Imagine the impact on someone living far away, having to travel many kilometers from their home to Maseru. How frustrating is that?

“These are some of the genuine challenges. I successfully completed my chemotherapy, but then came radiation. It was another formidable challenge. Following radiation, I was prescribed Tamoxifen, a daily pill that I needed to take for a full five years,” Chaka said.

Drowning caregivers need help

The burden of cancer treatment extends not only to patients but also to their caregivers. Lebohang Tlouoe, who cared for his partner during the height of the Covid-19 pandemic, vividly recalls a challenging incident.

“I remember the time when my patient had to be referred to Bloemfontein, and we were informed about the shortage of ambulances. I felt so frustrated, as if I was the one who was sick,” Tlouoe expressed.

Another source of frustration during the numerous delays was the revelation by the doctor that the cancer was spreading through the blood.

“This left us wondering about the next steps,” Tlouoe shared, adding “We pinned all our hope on God, and thankfully, she received the medical attention she needed. However, it was so difficult that, at times, I felt as if I had cancer too and that I was going to die.”

The American Society of Clinical Oncology (ASCO) recommends that all patients with a diagnosis of advanced cancer be referred to a palliative care team within 8 weeks of diagnosis.

“The benefits of early integrated palliative care are well recognised; however, there is a lack of consensus to guide operational aspects of a palliative care service within a comprehensive cancer centre.” 

In Lesotho, only the Senkatana Oncology Clinic offers outpatient palliative care services, and this offering is fairly new because it started only in 2020.

Starlight Oasis of Hope plans to become the first palliative care services and hospice in Lesotho and has since secured land in Maqhaka, Berea.

Dr Paul Myres of Starlight Oasis of Hope. Credit: Limpho Sello.

Starlight Oasis of Hope’s Dr Paul Myres knows too many sad stories of cancer both with his wife and interaction with cancer patients in Lesotho.

“Palliative Care cannot cure people. We cannot promise everybody that they will not have pain and suffering, but we need to give them the assurance that they are not alone in that journey,” Dr Myres said.

He adds: “I have seen the comfort in people’s eyes when they are being assured that they are not alone.”

Through Starlight Oasis of Hope’s efforts, Dr Myres says the National Health Training College will soon incorporate palliative care into its training of nurses. He says palliative care services must be provided immediately after one is diagnosed with cancer to help ease the pain.

“This is from right at the start of the diagnosis, the start of the cancer journey, right through the time that people can no longer look after themselves,” Dr Myres said.

Minister Mochoboroane says Basotho are “dying at an alarming rate due to cancer.”

“Last year (2022) we got reports of new cancer infections at 600. Common cancers were prostate cancer, breast cancer, and cervical cancer,” Mochoboroane said.

To ease the pain on both patients and caregivers, Dr Banda from WHO says palliative care should be integrated into Primary Health Care (PHC) to ensure that individuals can access it as essential services and support, regardless of their location.

“We must adopt a transformative approach that ensures the provision of palliative care at an earlier stage of an illness and at all levels of care, thereby promoting a better quality of life for patients,” Dr Banda emphasised.

Unsympathetic employers

Breast cancer survivor ‘Maatang Chaka remembers how she suffered memory loss due to cancer treatment. First, Chaka could not remember her children’s names.

“I even lost my job due to memory loss. That is how worse things got. This is the job I got three months after my recovery from the hospital. This was a difficult time,” Chaka explained.

She has since appealed to employers and communities that cancer patients live in to be more empathetic and that it is important for them to learn more about patient conditions.

“There is a need for social workers and psychologists who will provide pre and post-counselling because cancer leaves deep emotional and physical scars,” Chaka said.

In order to achieve this, Dr Banda appeals to the government, healthcare professionals, health partners, Civil Society Organisations and communities to collaborate in developing clear policies, guidelines, and standards for palliative care services in the country.

He says this collaboration will build the capacity of healthcare providers and caregivers in communities and raise awareness, ensuring that palliative care becomes an integral part of the healthcare system.

“Attention to the quality of palliative care services is also crucial. In response to existing gaps, WHO has released new resources to assist countries in evaluating the development of palliative care and enhancing the quality of palliative care services.”

In the end, Chaka advises people to normalise going for cancer screening because early detection gives one a better chance at beating cancer.

“I wish we reach a point where there will be calmness when we do our cancer screening and not panic when the news is broken to us that we have cancer,” Chaka concluded.

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