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More than 70% of all new cancer cases occur in low-income countries. Of these, the vast majority cannot be cured because they are diagnosed too late for effective treatment. All that can be done is to provide pain control and palliative care services for the terminally ill. Yet in the overburdened health systems of many poor nations, relief for those in need is either limited or non existent.
In Albania, a country which has witnessed dramatic political and economic changes in recent years, the government is taking important steps towards improving and modernizing health structures. Experts say the largely traditional and community-based services of the past no longer meet the needs and expectations of the people in this country of 4 million. But while efforts are being made to establish a comprehensive cancer care and control programme — including education, prevention, early diagnosis and treatment — palliative care for terminal cancer patients remains a low priority, the result of a lack of resources and low awareness coupled with ingrained attitudes attached to chronic disease.
“Palliative care is a new field in Albania and there are many problems facing us,” says Rudina Rama, a social worker at the country's only hospice, the Sue Ryder Care Center in Tirana. Sitting in the Secretariat of the quiet, modern building, Ms Rama ticks off on her fingers the challenges facing staff at the hospice. “From a social aspect, the main problem is that most of our patients are unaware of their cancer diagnosis. This means we're not able to tell them the truth about their condition, which makes it very difficult for us to do our work,” she says.
Another problem, Ms Rama explains, is that many of the patients are very poor people who can't afford to buy the drugs needed to relieve their pain. At the same time, social structures are changing. Albanians are moving from the traditional to the nuclear family, and from rural to urban areas. This can result in social dislocation. “Patients often feel alone, abandoned and left out of the public structures, which can lead to depression and despair,” she says. “The health system doesn't support these patients.”
The British Sue Ryder Care Foundation first started charitable work in Albania in 1993, bringing domiciliary help to the terminally ill. The ten-bed hospice in Tirana was opened ten years later and today is still the country's only palliative care service staffed by a multi-disciplinary team including doctors, nurses, a social worker and psychologist. Each day they care for ten in-patients and an additional 40 terminal cancer patients through domiciliary services, free of charge. The team is also responsible for roughly the same number of patients in the coastal city of Durres. Although meeting only a tiny fraction of the country's needs, staff hope the hospice can become a centre of excellence from which others might grow. Currently, palliative services elsewhere in Albania are limited to just a few small non-profit organizations struggling against the increasing tide of cancer.
But funding is limited and the hospice is facing the difficulty of finding 50% of its annual EUR 260,000 budget for the coming year. No easy task in a country like Albania which is in transition and where most of the population is extremely poor. “People don't have the money to give. And, because little money is spent by the health authorities on education and awareness, most people have no idea why this service is needed,” says Dr. Erjon Karoli, the hospice's psychologist. “If they knew what kind of service we offer, and how badly it's needed, they might be more willing to donate money to help patients.”
Like Ms Rama, Dr. Karoli says his work is seriously hindered by traditional Albanian thinking concerning chronic disease and which, in more than 70% of cases, does not allow acknowledgement of cancer. “I tell relatives it would be much easier for everybody to give patients the truth about their diagnosis, but that's not the Albanian way. Most families choose not to inform the patient,” he says. “I try to establish counselling but I'm dealing with patients who are not aware that they are dying. They still hope to find a cure for their disease. This is where my work is more complicated because I'm trying to establish a rapport with the patient based on sincerity and trust but without being able to speak the truth.”
For doctors and nurses working at the Sue Ryder hospice in Tirana, education of the general public is vital if palliative care is to become more widely available. They say that serious chronic diseases such as cancer must be de-stigmatised and the needs of the terminally ill faced square on. Once families start seeking palliative care for dying relatives, the public health system will have to respond and place such services on the national health agenda. And that, they say, will be to the benefit of all — especially the patients and their families.
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