Due to the sheer numbers involved, the debilitating symptom burden, and the cost and expertise associated with treatment such as dialysis/transplantation, renal palliative care has become extremely important to manage the symptoms of these patients whether they are on an aggressive or conservative treatment pathway.
Chronic Kidney Disease (CKD) commonly occurs due to hypertension and/or diabetes. It affects middle aged or older people of both sexes and affects the glomerulus of the nephron.
Chronic Kidney Disease of unknown origin (CKDu), on the other hand, is a distinct entity where relatively younger people – mainly males – are affected independent of diabetes or hypertension and it affects the tubules of the nephron.
Presently an estimated 400,000 people in the North Central, Northern, Eastern and Uva Provinces of Sri Lanka have been affected and 25,000 have already died from CKDu.
Since the first reported case was detected in 1992 in Siripura village in Padaviya, the prevalence of CKDu has doubled every eight years and is estimated to affect nearly 40% of the population of Sri Lanka by year 2032.
The causes of CKDu are still being investigated, but several studies done up to now by the WHO and academia indicate that heavy metals such as cadmium and other agro chemicals, glyphosate, heat stress, and hard water in the endemic areas may be individual or combined contributing factors.
The need for treatment and palliative care for CKDu
At the present moment Sri Lanka needs about 2500 dialysis machines but only have 249, including in the private healthcare sector. The lack of trained dialysis nurses is also a major limiting factor in enhancing the dialysing capacity.
Due to the large numbers involved a renal transplantation program for a definitive cure is extremely hard to sustain. Most patients on dialysis end up needing renal palliative care, which is also not well established in Sri Lanka.
Even during dialysis, patients experience many symptoms such as fatigue, pain, uraemic itch, restless leg syndrome, loss of appetite and sleep, and depression among others, which needs to be properly managed through palliative care.
Financial pressures and family dynamics
Apart from the physical issues faced in the course of prevention, treatment and palliative care, there are other more damaging financial and psychosocial issues affecting these patients and their families.
When the younger male farmers who are normally the sole breadwinners of their families are affected by CKDu, their wives and the children also are affected in a big way.
Due to financial hardships that accompany treatment, they often sell their family homes, go into debt, or resort to prostitution. Children’s schooling is interrupted, causing major damage to the very social fabric that keeps them together as a family unit.
The work of Shanthi Foundation Australia for CKDu and palliative care in Sri Lanka
Shanthi Foundation, a charity registered in Australia, has been helping Sri Lanka to develop palliative care and combat CKDu over the last two years.
In terms of prevention, the Shanthi Foundation installed the Clean Water for Life Programme. This programme installed and maintains 40 Reverse Osmosis machines in 40 schools and villages producing clean drinking water to keep the next generation from being affected by CKDu.
Shanthi Foundation promotes organic farming and started a Kenda (porridge) Programme in schools using native organic rice to help children’s nutrition and promote the use of organic products.
For treatment, Shanthi Foundation donated new and used equipment worth over $300,000, such as electric beds, to rural hospitals in CKDu-affected areas.
Renal Palliative Care was introduced to Sri Lanka and India through workshops in Colombo and Anuradhapura together with the Society of Nephrologists in Sri Lanka.
Shanthi Foundation is developing a Hospice/Palliative Care Unit in Anuradhapura, as a joint venture project with the Cancer Care Association of Sri Lanka to look after people with cancer and CKDu. They also introduced a Patient and Family Sponsorship Programme for patients with life-limiting illnesses in Sri Lanka, such as cancer and CKDu.
The organisation is also introducing home-based (community) palliative care to Sri Lanka, deploying Shanthi Nurses to look after CKDu patients in their own homes. They have conducted many palliative care training programmes for doctors, nurses and social workers in Sri Lanka and India in collaboration with local, regional and international partners such as the Australian Institute of Palliative Medicine.
Properly formulated internationally recognised research, education, prevention, treatment and palliative care are all needed to combat the growing menace of CKDu in Sri Lanka. Shanthi Foundation is taking positive steps to make this a reality.
For more information visit the Shanthi Foundation website.
Dr Suharsha Kanathigoda is Founder and Chairman of Shanthi Foundation, Australia, and Consultant Staff Specialist in Palliative Medicine-Calvary Health Care ACT, Australia, Lecturer at the Australian National University (ANU), Director of Australian Institute of Palliative Medicine (AIPM), and Patron of the Palliative Care Association of Sri Lanka.