Features
Patient-centred care and CKDu
Some observations on the occasion of World Kidney Day
By Prof. M.W. Amarasiri de Silva
(Inaugural Fellow, International Society of Nephrology 2018, Adjunct Professor at the University of Pittsburgh, USA, and Professor Emeritus, University of Peradeniya)
Today is World Kidney Day, and this year the principal focus is on patient-centred care for people living with kidney disease. This theme highlights the increasing recognition of the need to identify and address patients’ priorities, values, and goals in order to advance the research, practice, and policy designed to improve the quality of life of people suffering from chronic kidney disease. Regardless of the type of kidney disease or the approach to treatment adopted, patients want to live well, retain their social place, maintain some semblance of normality, and have a sense of control over their health and wellbeing.
A patient-centred approach is one where the patients are treated as social individuals and enabled to take control of and improve their health. Thus, they become active participants in their care. Their biology becomes secondary in this process. Members of patients’ families and communities can continue to focus on them as people, rather than on their illness or disability. Support should concentrate on achieving the patients’ aspirations and be tailored to their needs and unique circumstances.
A patient-centred approach to health requires building public policy, creating supportive environments, facilitating community action, and developing and improving patients’ skills and knowledge of disease management. Overall, any such programme requires a complete reorientation of the treatment system. Those who work directly with patients at the District Secretariat (DS) Division level – the public health inspectors, public health nurses, nurses, hospital attendants, community workers, health educators, rural development officers, childcare officers, and others – should be directed towards a patient-centred approach, and trained in good communication skills and to address patient needs effectively. A patient-centred approach should address those with chronic disease of unknown aetiology (CKDu) within their family and community, and become an integral part of everyday life in the family and community. If CKDu sufferers are uprooted from their social setting and placed in a clinic-based environment, the treatment system becomes an artificial one with no link to the patient’s cultural milieu. Such treatment systems do not work satisfactorily.
In western societies, community health workers, working in communities, facilitate this process by assisting the medical specialists in hospitals. They visit the homes of patients and help their families to overcome problems through counselling. In Sri Lanka, such a link between the community/family and the hospital, focusing on the patient, is missing. Especially with regards to CKDu patients, establishing a connection between the community and the hospital is crucial. Such a link would help to alleviate the stigma attached to CKDu patients in the community and the neglect and isolation that many have to endure. Visits by hospital staff and paramedics to patients in their homes can improve the understanding of hospital staff about how patients live at home, what problems do they face at home and in the community. It would improve the commitment of patients towards their treatment. This would also improve their compliance with their medical regimen. A change in the treatment procedures from a hospital-based system to a patient-centred one is necessary, as the existing approach has had little impact in assisting CKDu patients in addressing their grievances and improving their quality of life, or in reducing the incidence of and death rates from the disease.
In a patient-centred approach to the treatment and care of CKDu patients, essential elements are community engagement and empowerment. Educating the patients and their families on disease risk factors and treatments is a prerequisite. In Sri Lanka, government programmes have invested in developing people’s understanding of the risk factors for CKDu but have not paid much attention to improving people’s knowledge of treatments and testing procedures. Therefore, most people in CKDu-affected areas have knowledge of the causes of CKDu, but have limited understanding of treatments. As a result, patients are not able to make an informed decision on the type of treatment that they should undergo or to discuss the subject with their medical professionals. They blindly accept (or reject) the type of treatment recommended by the doctors.
In Sri Lanka, people’s knowledge of treatments for kidney disease is fragmentary. Their knowledge of things like blood transfusion is limited and is very hospital centred. Experience in other countries shows that patients on a home therapy or haemodialysis at home were more satisfied than those with in-centre haemodialysis. In Sri Lanka, haemodialysis at home has not been promoted.
Most CKDu patients undergo harrowing experiences in their communities and at home. They report a substantial drop in their quality of life. Their illness means that they cannot draw water from the dug well to wash or use the toilets with squatting pans. They are advised to install commodes in their toilets, but most CKDu patients cannot afford to do this. Many say that they cannot cultivate their rice paddy land, so they don’t get any income from agriculture. Although they are paid Rs. 5,000 by the government each month, that is not adequate for a family of five people to live an ordinary life. As CKDu patients find it difficult to use public transport, they have to hire a vehicle at a significant cost each time they visit the clinic. In many families, children have dropped out of school because their parents cannot afford to provide for their education. About 15% of CKDu patients in the villages live alone, with, in many cases, their wives having left them and gone to the Middle East for employment. Family members say that the CKDu patients have become demanding. Many CKDu patients and their family members display signs of depression and uneasiness.
Those patients on dialysis need to attend the clinic once every three days. Many patients do not attend the clinics as required due to financial difficulties. Each visit to the clinic requires Rs. 2,000 to 3,000 for transportation, which is beyond many patients’ means, and therefore, after a few visits, they drop out of the dialysis programme. A patient told me, ‘the doctor told me that I have to get a kidney transplant. I am on the waiting list like many thousands of patients. I have no great hopes anyway. I undergo blood transfusion. I was asked to come to the clinic every third day, but I don’t have money to pay for a vehicle every time. I mortgaged my two acres of rice paddy two years ago, and the money has been spent on my treatment and food for the family’.
A patient-centred approach should highlight how to improve the quality of life of CKDu patients and families. The quality of life for patients should become the dominant preoccupation in health promotion in CKDu communities. Essential health professionals, such as health educators, public health inspectors, and public health midwives, should take the lead in educating the CKDu-affected population about the management of patients at home and in their communities. They should discuss how behavioural changes could improve health, for example identifying the adverse effects of smoking and chewing tobacco. Referring to her husband, a CKDu patient, a woman said, ‘My husband smokes a lot. He smokes a bundle of beedi a day. One bundle of beedi is Rs. 100 and contains 25 beedis. He smokes them at night, early in the morning, and at work… However much I tell him to, he doesn’t stop’. Many patients do not regularly take the medication given by the clinic or attend their appointments as scheduled.
People surveyed during the course of my research were not very aware of the difference between CKD and CKDu. Most CKDu patients identified having diabetes and high blood pressure as risk factors for CKDu. They are risk factors for CKD, and CKDu develops due to other factors in the absence of diabetes and hypertension. Most end-stage patients did not know what treatment options were available for them, and preferred to stay and die at home. Compared to affluent families in the CKDu-affected communities, the paddy farmers who own less than two acres of rice paddy are less educated and lacking in CKDu-related health knowledge.
Any community empowerment programme, focusing on CKDu patients, should discuss the basics of kidney function, CKDu testing procedures, and the management of CKDu at home and in the community.
Recommendations:
A reorientation of the hospital-centred approach to a patient-centred one. This requires training local officers at the DS Division level. A programme for this has to be identified and discussed at ministerial level with the participation of Community Based Organisations in the area, patients, carers, medical and paramedical practitioners. A sociologist/anthropologist working in the area of community empowerment and participation would also be an asset.
The introduction of home dialysis should be considered as a measure to enhance the community/family role in CKDu disease management. Home dialysis needs a cleanroom, which is hard to find in farmer households in CKDu-endemic areas. Therefore, for each Grama Niladhari Division, the government should consider building a spacious room in a central location and constructing all the facilities for patients to come and undergo dialysis. A community member should be trained to handle the procedures.
To effectively address the increasing incidence of CKDu in the epidemic regions in Sri Lanka, a well-developed intervention and a community education programme, focusing on behavioural change, should be aimed at lower socioeconomic groups.
The government should strengthen the patient-centred approach to treatment and care. Although medical education programmes in the universities prioritize medical professionals’ role in treatment, patient-centred approaches are seldom discussed. The universities should focus on CKDu-affected districts when selecting villages for students’ intervention and training on a patient-centred approach. Departments of Community Medicine should take the lead in this direction.
A programme to address depression among CKDu patients, needs to be established. DS Division level officers appointed for community work should be trained to handle the psychological issues afflicting CKDu patients. The education and counselling of end-stage kidney patients are essential as many such people have refused to undergo dialysis or kidney transplants.
The basics of kidney function and the risk factors for CKDu should be taught to school pupils in areas where CKDu is endemic.
by Dr Gotabhya Ranasinghe
Senior Consultant Cardiologist
National Hospital Sri Lanka
When we sought a meeting with Hon Dr. Ramesh Pathirana, Minister of Health, he graciously cleared his busy schedule to accommodate us. Renowned for his attentive listening and deep understanding, Minister Pathirana is dedicated to advancing the health sector. His openness and transparency exemplify the qualities of an exemplary politician and minister.
Dr. Palitha Mahipala, the current Health Secretary, demonstrates both commendable enthusiasm and unwavering support. This combination of attributes makes him a highly compatible colleague for the esteemed Minister of Health.
Our discussion centered on a project that has been in the works for the past 30 years, one that no other minister had managed to advance.
Minister Pathirana, however, recognized the project’s significance and its potential to revolutionize care for heart patients.
The project involves the construction of a state-of-the-art facility at the premises of the National Hospital Colombo. The project’s location within the premises of the National Hospital underscores its importance and relevance to the healthcare infrastructure of the nation.
This facility will include a cardiology building and a tertiary care center, equipped with the latest technology to handle and treat all types of heart-related conditions and surgeries.
Securing funding was a major milestone for this initiative. Minister Pathirana successfully obtained approval for a $40 billion loan from the Asian Development Bank. With the funding in place, the foundation stone is scheduled to be laid in September this year, and construction will begin in January 2025.
This project guarantees a consistent and uninterrupted supply of stents and related medications for heart patients. As a result, patients will have timely access to essential medical supplies during their treatment and recovery. By securing these critical resources, the project aims to enhance patient outcomes, minimize treatment delays, and maintain the highest standards of cardiac care.
Upon its fruition, this monumental building will serve as a beacon of hope and healing, symbolizing the unwavering dedication to improving patient outcomes and fostering a healthier society.We anticipate a future marked by significant progress and positive outcomes in Sri Lanka’s cardiovascular treatment landscape within the foreseeable timeframe.
by Fr. Emmanuel Fernando, OMI
Jesuit Fr. Aloysius Pieris (affectionately called Fr. Aloy) celebrated his 90th birthday on April 9, 2024 and I, as the editor of our Oblate Journal, THE MISSIONARY OBLATE had gone to press by that time. Immediately I decided to publish an article, appreciating the untiring selfless services he continues to offer for inter-Faith dialogue, the renewal of the Catholic Church, his concern for the poor and the suffering Sri Lankan masses and to me, the present writer.
It was in 1988, when I was appointed Director of the Oblate Scholastics at Ampitiya by the then Oblate Provincial Fr. Anselm Silva, that I came to know Fr. Aloy more closely. Knowing well his expertise in matters spiritual, theological, Indological and pastoral, and with the collaborative spirit of my companion-formators, our Oblate Scholastics were sent to Tulana, the Research and Encounter Centre, Kelaniya, of which he is the Founder-Director, for ‘exposure-programmes’ on matters spiritual, biblical, theological and pastoral. Some of these dimensions according to my view and that of my companion-formators, were not available at the National Seminary, Ampitiya.
Ever since that time, our Oblate formators/ accompaniers at the Oblate Scholasticate, Ampitiya , have continued to send our Oblate Scholastics to Tulana Centre for deepening their insights and convictions regarding matters needed to serve the people in today’s context. Fr. Aloy also had tried very enthusiastically with the Oblate team headed by Frs. Oswald Firth and Clement Waidyasekara to begin a Theologate, directed by the Religious Congregations in Sri Lanka, for the contextual formation/ accompaniment of their members. It should very well be a desired goal of the Leaders / Provincials of the Religious Congregations.
Besides being a formator/accompanier at the Oblate Scholasticate, I was entrusted also with the task of editing and publishing our Oblate journal, ‘The Missionary Oblate’. To maintain the quality of the journal I continue to depend on Fr. Aloy for his thought-provoking and stimulating articles on Biblical Spirituality, Biblical Theology and Ecclesiology. I am very grateful to him for his generous assistance. Of late, his writings on renewal of the Church, initiated by Pope St. John XX111 and continued by Pope Francis through the Synodal path, published in our Oblate journal, enable our readers to focus their attention also on the needed renewal in the Catholic Church in Sri Lanka. Fr. Aloy appreciated very much the Synodal path adopted by the Jesuit Pope Francis for the renewal of the Church, rooted very much on prayerful discernment. In my Religious and presbyteral life, Fr.Aloy continues to be my spiritual animator / guide and ongoing formator / acccompanier.
Fr. Aloysius Pieris, BA Hons (Lond), LPh (SHC, India), STL (PFT, Naples), PhD (SLU/VC), ThD (Tilburg), D.Ltt (KU), has been one of the eminent Asian theologians well recognized internationally and one who has lectured and held visiting chairs in many universities both in the West and in the East. Many members of Religious Congregations from Asian countries have benefited from his lectures and guidance in the East Asian Pastoral Institute (EAPI) in Manila, Philippines. He had been a Theologian consulted by the Federation of Asian Bishops’ Conferences for many years. During his professorship at the Gregorian University in Rome, he was called to be a member of a special group of advisers on other religions consulted by Pope Paul VI.
Fr. Aloy is the author of more than 30 books and well over 500 Research Papers. Some of his books and articles have been translated and published in several countries. Among those books, one can find the following: 1) The Genesis of an Asian Theology of Liberation (An Autobiographical Excursus on the Art of Theologising in Asia, 2) An Asian Theology of Liberation, 3) Providential Timeliness of Vatican 11 (a long-overdue halt to a scandalous millennium, 4) Give Vatican 11 a chance, 5) Leadership in the Church, 6) Relishing our faith in working for justice (Themes for study and discussion), 7) A Message meant mainly, not exclusively for Jesuits (Background information necessary for helping Francis renew the Church), 8) Lent in Lanka (Reflections and Resolutions, 9) Love meets wisdom (A Christian Experience of Buddhism, 10) Fire and Water 11) God’s Reign for God’s poor, 12) Our Unhiddden Agenda (How we Jesuits work, pray and form our men). He is also the Editor of two journals, Vagdevi, Journal of Religious Reflection and Dialogue, New Series.
Fr. Aloy has a BA in Pali and Sanskrit from the University of London and a Ph.D in Buddhist Philosophy from the University of Sri Lankan, Vidyodaya Campus. On Nov. 23, 2019, he was awarded the prestigious honorary Doctorate of Literature (D.Litt) by the Chancellor of the University of Kelaniya, the Most Venerable Welamitiyawe Dharmakirthi Sri Kusala Dhamma Thera.
Fr. Aloy continues to be a promoter of Gospel values and virtues. Justice as a constitutive dimension of love and social concern for the downtrodden masses are very much noted in his life and work. He had very much appreciated the commitment of the late Fr. Joseph (Joe) Fernando, the National Director of the Social and Economic Centre (SEDEC) for the poor.
In Sri Lanka, a few religious Congregations – the Good Shepherd Sisters, the Christian Brothers, the Marist Brothers and the Oblates – have invited him to animate their members especially during their Provincial Congresses, Chapters and International Conferences. The mainline Christian Churches also have sought his advice and followed his seminars. I, for one, regret very much, that the Sri Lankan authorities of the Catholic Church –today’s Hierarchy—- have not sought Fr.
Aloy’s expertise for the renewal of the Catholic Church in Sri Lanka and thus have not benefited from the immense store of wisdom and insight that he can offer to our local Church while the Sri Lankan bishops who governed the Catholic church in the immediate aftermath of the Second Vatican Council (Edmund Fernando OMI, Anthony de Saram, Leo Nanayakkara OSB, Frank Marcus Fernando, Paul Perera,) visited him and consulted him on many matters. Among the Tamil Bishops, Bishop Rayappu Joseph was keeping close contact with him and Bishop J. Deogupillai hosted him and his team visiting him after the horrible Black July massacre of Tamils.
Sri Lanka-Singapore Free Trade Agreement
By Gomi Senadhira
senadhiragomi@gmail.com
“You might tell fairy tales, but the progress of a country cannot be achieved through such narratives. A country cannot be developed by making false promises. The country moved backward because of the electoral promises made by political parties throughout time. We have witnessed that the ultimate result of this is the country becoming bankrupt. Unfortunately, many segments of the population have not come to realize this yet.” – President Ranil Wickremesinghe, 2024 Budget speech
Any Sri Lankan would agree with the above words of President Wickremesinghe on the false promises our politicians and officials make and the fairy tales they narrate which bankrupted this country. So, to understand this, let’s look at one such fairy tale with lots of false promises; Ranil Wickremesinghe’s greatest achievement in the area of international trade and investment promotion during the Yahapalana period, Sri Lanka-Singapore Free Trade Agreement (SLSFTA).
It is appropriate and timely to do it now as Finance Minister Wickremesinghe has just presented to parliament a bill on the National Policy on Economic Transformation which includes the establishment of an Office for International Trade and the Sri Lanka Institute of Economics and International Trade.
Was SLSFTA a “Cleverly negotiated Free Trade Agreement” as stated by the (former) Minister of Development Strategies and International Trade Malik Samarawickrama during the Parliamentary Debate on the SLSFTA in July 2018, or a colossal blunder covered up with lies, false promises, and fairy tales? After SLSFTA was signed there were a number of fairy tales published on this agreement by the Ministry of Development Strategies and International, Institute of Policy Studies, and others.
However, for this article, I would like to limit my comments to the speech by Minister Samarawickrama during the Parliamentary Debate, and the two most important areas in the agreement which were covered up with lies, fairy tales, and false promises, namely: revenue loss for Sri Lanka and Investment from Singapore. On the other important area, “Waste products dumping” I do not want to comment here as I have written extensively on the issue.
1. The revenue loss
During the Parliamentary Debate in July 2018, Minister Samarawickrama stated “…. let me reiterate that this FTA with Singapore has been very cleverly negotiated by us…. The liberalisation programme under this FTA has been carefully designed to have the least impact on domestic industry and revenue collection. We have included all revenue sensitive items in the negative list of items which will not be subject to removal of tariff. Therefore, 97.8% revenue from Customs duty is protected. Our tariff liberalisation will take place over a period of 12-15 years! In fact, the revenue earned through tariffs on goods imported from Singapore last year was Rs. 35 billion.
The revenue loss for over the next 15 years due to the FTA is only Rs. 733 million– which when annualised, on average, is just Rs. 51 million. That is just 0.14% per year! So anyone who claims the Singapore FTA causes revenue loss to the Government cannot do basic arithmetic! Mr. Speaker, in conclusion, I call on my fellow members of this House – don’t mislead the public with baseless criticism that is not grounded in facts. Don’t look at petty politics and use these issues for your own political survival.”
I was surprised to read the minister’s speech because an article published in January 2018 in “The Straits Times“, based on information released by the Singaporean Negotiators stated, “…. With the FTA, tariff savings for Singapore exports are estimated to hit $10 million annually“.
As the annual tariff savings (that is the revenue loss for Sri Lanka) calculated by the Singaporean Negotiators, Singaporean $ 10 million (Sri Lankan rupees 1,200 million in 2018) was way above the rupees’ 733 million revenue loss for 15 years estimated by the Sri Lankan negotiators, it was clear to any observer that one of the parties to the agreement had not done the basic arithmetic!
Six years later, according to a report published by “The Morning” newspaper, speaking at the Committee on Public Finance (COPF) on 7th May 2024, Mr Samarawickrama’s chief trade negotiator K.J. Weerasinghehad had admitted “…. that forecasted revenue loss for the Government of Sri Lanka through the Singapore FTA is Rs. 450 million in 2023 and Rs. 1.3 billion in 2024.”
If these numbers are correct, as tariff liberalisation under the SLSFTA has just started, we will pass Rs 2 billion very soon. Then, the question is how Sri Lanka’s trade negotiators made such a colossal blunder. Didn’t they do their basic arithmetic? If they didn’t know how to do basic arithmetic they should have at least done their basic readings. For example, the headline of the article published in The Straits Times in January 2018 was “Singapore, Sri Lanka sign FTA, annual savings of $10m expected”.
Anyway, as Sri Lanka’s chief negotiator reiterated at the COPF meeting that “…. since 99% of the tariffs in Singapore have zero rates of duty, Sri Lanka has agreed on 80% tariff liberalisation over a period of 15 years while expecting Singapore investments to address the imbalance in trade,” let’s turn towards investment.
Investment from Singapore
In July 2018, speaking during the Parliamentary Debate on the FTA this is what Minister Malik Samarawickrama stated on investment from Singapore, “Already, thanks to this FTA, in just the past two-and-a-half months since the agreement came into effect we have received a proposal from Singapore for investment amounting to $ 14.8 billion in an oil refinery for export of petroleum products. In addition, we have proposals for a steel manufacturing plant for exports ($ 1 billion investment), flour milling plant ($ 50 million), sugar refinery ($ 200 million). This adds up to more than $ 16.05 billion in the pipeline on these projects alone.
And all of these projects will create thousands of more jobs for our people. In principle approval has already been granted by the BOI and the investors are awaiting the release of land the environmental approvals to commence the project.
I request the Opposition and those with vested interests to change their narrow-minded thinking and join us to develop our country. We must always look at what is best for the whole community, not just the few who may oppose. We owe it to our people to courageously take decisions that will change their lives for the better.”
According to the media report I quoted earlier, speaking at the Committee on Public Finance (COPF) Chief Negotiator Weerasinghe has admitted that Sri Lanka was not happy with overall Singapore investments that have come in the past few years in return for the trade liberalisation under the Singapore-Sri Lanka Free Trade Agreement. He has added that between 2021 and 2023 the total investment from Singapore had been around $162 million!
What happened to those projects worth $16 billion negotiated, thanks to the SLSFTA, in just the two-and-a-half months after the agreement came into effect and approved by the BOI? I do not know about the steel manufacturing plant for exports ($ 1 billion investment), flour milling plant ($ 50 million) and sugar refinery ($ 200 million).
However, story of the multibillion-dollar investment in the Petroleum Refinery unfolded in a manner that would qualify it as the best fairy tale with false promises presented by our politicians and the officials, prior to 2019 elections.
Though many Sri Lankans got to know, through the media which repeatedly highlighted a plethora of issues surrounding the project and the questionable credentials of the Singaporean investor, the construction work on the Mirrijiwela Oil Refinery along with the cement factory began on the24th of March 2019 with a bang and Minister Ranil Wickremesinghe and his ministers along with the foreign and local dignitaries laid the foundation stones.
That was few months before the 2019 Presidential elections. Inaugurating the construction work Prime Minister Ranil Wickremesinghe said the projects will create thousands of job opportunities in the area and surrounding districts.
The oil refinery, which was to be built over 200 acres of land, with the capacity to refine 200,000 barrels of crude oil per day, was to generate US$7 billion of exports and create 1,500 direct and 3,000 indirect jobs. The construction of the refinery was to be completed in 44 months. Four years later, in August 2023 the Cabinet of Ministers approved the proposal presented by President Ranil Wickremesinghe to cancel the agreement with the investors of the refinery as the project has not been implemented! Can they explain to the country how much money was wasted to produce that fairy tale?
It is obvious that the President, ministers, and officials had made huge blunders and had deliberately misled the public and the parliament on the revenue loss and potential investment from SLSFTA with fairy tales and false promises.
As the president himself said, a country cannot be developed by making false promises or with fairy tales and these false promises and fairy tales had bankrupted the country. “Unfortunately, many segments of the population have not come to realize this yet”.
(The writer, a specialist and an activist on trade and development issues . )
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