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Patient-centred care and CKDu

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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.



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Ramazan spirit endures amid pandemic

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This will be a sombre Ramazan, indeed, with the country under a lockdown. But the spirit of Ramazan lives on in all Muslims. Ramadan, also referred to as Ramazan, Ramzan, or Ramadhan, in some countries, is the ninth month of the Islamic calendar, and Muslims the world over dedicate this holy month for fasting, prayer, reflection and community.

Although most non-Muslims associate Ramazan, solely with fasting, it is believed to bring Muslims closer to God and inculcate in them qualities such as patience, spirituality, and humility. Those of the Islamic faith believe that fasting redirects one away from worldly activities, cleanses the inner soul and free it from harm. It also teaches self-discipline, self-control, sacrifice, and empathy for those who are less fortunate and encourage actions of generosity and charity. It is a time of self-examination and increased religious devotion.

Ramazan is a commemoration of Prophet Muhammad’s first revelation, and the annual observance of Ramazan is regarded as one of the Five Pillars of Islam. The Five Pillars are basic acts, considered mandatory by Muslims, namely Muslim life, prayer, concern for the needy, self-purification, and the pilgrimage. Prophet Muhammad’s first revelation is believed to have taken place in 610 AD, in a cave called Hira, located near Mecca, where Muhammad was visited by the angel Jibrīl, who revealed to him the beginnings of what would later become the Qur’an. The visitation occurred on Ramazan.

Ramazan lasts from one sighting of the crescent moon to the next and the local religious authority is tasked with announcing the date. The Colombo Grand Mosque announced on Wednesday (12) that Sri Lankan Muslims will celebrate Ramazan on Friday (14). Because the Muslims follow a lunar calendar, the start of Ramazan moves backwards by about 11 days, each year, in the Gregorian calendar. Fasting from dawn to sunset is considered fard (obligatory) for all adult Muslims who are not acutely, or chronically, ill, travelling, elderly, breastfeeding, diabetic, or menstruating.

During this month, Muslims refrain not only from partaking of meals, but also tobacco products, sexual relations, and sinful behaviour, devoting themselves to prayer or salat and recitation of the Quran. The pre-dawn meal is referred to as suhur, and the nightly feast that breaks fast is referred to as iftar. During Ramazan, Muslims wake up well before dawn to eat the pre-dawn meal. This is considered the most important meal, during Ramazan, since it has to sustain one until sunset. This means eating lots of high-protein food and drinking as much water as possible, right up until dawn, after which one cannot eat or drink anything. The day of fasting ends at sunset, the exact minute of which is signalled by the fourth call to prayer, at dusk.

It is believed that spiritual rewards, or thawab, of fasting multiply during Ramazan. Muslims do not Fast on Eid, but Sri Lankan Muslims believe that observing the six days of optional fasting, that follows Eid, multiplies spiritual rewards.

Eid-Ul-Fitr is the Festival of Breaking the Fast, also simply referred to as Eid, and marks the end of the month-long dawn-to-sunset fasting of Ramadan, as well as the return to a more natural disposition of eating, drinking, and marital intimacy. In Sri Lanka, this Festival of Breaking the Fast is also referred to, colloquially, as Ramazan. Eid begins at sunset, on the night of the first sighting of the crescent moon. Muslims hand out money, to the poor and needy, as an obligatory act of charity, before performing the Eid prayer.

Globally, the Eid prayer is generally performed in open areas, like fields, community centres, or mosques in congregation. In Sri Lanka, the prayer is performed annually in Galle Face Green and mosques. The Eid prayer is followed by the sermon and then a supplication asking for Allah’s forgiveness, mercy, peace and blessings for all living beings across the world. The sermon encourages Muslims to engage in the rituals of Eid, such as zakat, almsgiving to other fellow Muslims. After the prayers, Muslims visit relatives, friends, and acquaintances, or hold large communal celebrations.

After prayer, Muslims celebrate Eid, with food being the central theme. Sri Lankans celebrate Ramazan with watalappam, falooda, samosa, gulab jamun and other national and regional dishes. The festivals were said to have initiated in Medina, after the migration of Muhammad from Mecca.

This year, as well as last year, Sri Lankan Muslims will have to forgo the custom of communal prayers, and celebrations, due to the ongoing pandemic, and will have to settle for private prayers and celebrations of Ramazan during this period of curfew. While these preventive measures are in place, during this year’s Ramazan, the principles of this holy month remain the same. Devout Muslims all over the world, will still be honouring this pillar of Islam, albeit from the security of their homes.

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Dip Corps Plum Job? I don’t think so!

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I was reading an article in the papers the other day saying that the Attorney General (soon to retire) had turned down a “plum job” (interesting and archaic term) by refusing to go as the High commissioner to Canada. In the days when terminology such as “plum job” was used indeed any member of the Diplomatic Corps was considered elite. They usually came from people who had got degrees with a class and preferably a 1st class, and I believe they had to get through a tough civil service exam as well. Before they reached the top post of High Commissioner (if they came from the service) they had to spend many years learning the ropes. A few High Commissioners were appointed from among civil service retirees in other fields and if so, their role was largely ceremonial with the other staff in the embassy handling the actual policy matters.

Ever since the advent of “Kukul Charlie” to Scandinavia as H/C, during the R. Premadasa regime, this worthy actually had a mini chicken farm in the premises of the embassy, and slightly before that the actions of A.C.S. Hameed as the minister of foreign affairs during the J.R.J. regime.The Dip: Co: has degenerated into a mess. Most of the staffers are political appointees and even the progeny of Ministers and MP draw salaries from the embassy, to fund their overseas studies. Everybody seems to be running his or her own little racket to supplement his or her foreign currency incomes. Many of them don’t even come back when their terms are over. The Ambassador’s main role seems to be a taxi driver or to use modern terminology Uber driver for vising VIP’s and their assorted relatives.

Is it a wonder that the incumbent Attorney General chose to decline an offer of this sort? An offer that would have consigned him to oblivion (as seems to be what happens to all able-bodied, intelligent, and capable people in the Pearl) and to top it off, dealing with the freezing conditions of the Canadian winter. This is a blatant attempt to sideline a capable professional who is perceived as a threat to the government as he seems a bit of a maverick and his penchant to toe the line cannot be guaranteed. Now, instead of appreciating constructive criticism and the actions of a professional guided by his knowledge and ethics, the increasingly military regime wants order followers. Extensions of terms come very easily to those characterless wimps who fill and overflow the ranks of government employees! In this case, a “kick upstairs” seems to be what the powers that be require. I guess the inherent and ever-present guiding light of jealousy among his peers, keeps organisations such as the bar association from protesting these actions? I am sure they will find an excuse all covered in legalize. I fear Mr. Livera will have to carve his own path through the morass of muck that is the Pearl at present.

What demoralises me further is that editors of newspapers and even so-called “journalists” write and publish such articles when they are well aware of the true reasons and facts. Then again, I have read articles quoting government financial “geniuses” saying that printing money will not be detrimental to the economy and even some ministers saying that devaluation of the rupee simply means more money coming in from Middle Eastern remittances and a better lifestyle for the beneficiaries! I was even sent a link by a friend to a published article saying Sri Lanka has done a better job than New Zealand to maintain a low Covid death rate. Of course, the link came with the words “Ammata Siri” from a friend of mine!

On the subject of Covid, I am told the predictions for the Pearl based on statistics put out by American Universities, are dire. Now, I know that those ruling the country firmly believe that Sri Lanka is the centre of the universe and anything said by anyone other than themselves is utter rubbish. BUT I see an opportunity here … this is the time to form a “war cabinet” to overcome this catastrophe. Kick out all the idiots who are simply drawing huge salaries, and gadding about in flash new duty-free vehicles. Send them to their electorates and tell them to stay there, travel by bus, mix with the populace, and do their JOBS. Cut their salaries by 75% and use that money to give benefits to those affected by the virus and resultant recession. Form a Cabinet of 20 (maximum) and concentrate on saving our country and her people so that we can live to fight another day.

I have heard rumblings of discontent among the ruling clan. The big cheese is apparently being hampered by the blue cheese (old cheese) and his direct decedents. Be that as it may there certainly are around 70% of those currently in government who can be sent home to their electorates. There are a handful of those in Opposition who may be able to do a good job in these circumstances if included in this war cabinet. There certainly is a foreign minister in waiting, who doesn’t even have a parliamentary seat at present. The current sitting of parliament is said to cost an astronomical figure per sitting. Close it down and have cabinet meetings at Temple trees or TT as is the current local parlance. Another huge saving that can be distributed among those daily paid labourers who have no way to feed their families at present. Use the Parliamentary cooking facilities to make lunch packets for the needy.

There are opportunities even among this present and perceived chaos. All it takes is the will of a strong leader who is prepared to think outside the box. The current president certainly has the powers, but does he have the will? The country certainly thought he had done when they gave him that massive majority!

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Vaccine need and experts vs political power

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Manna from the skies and the drop of water to a man dying of thirst is for most now a jab in the upper arm which will hopefully keep at bay the dreaded omnipotent, omnipresent Covid 19 virus. It seems to be getting more virulent especially in poorer countries. But countries with massive daily numbers of those ill with C19 and large numbers dead, are fast returning to near normal e.g. USA. A young man who hibernated for the last fourteen months is away on holiday in the Big Apple – a separate State from his. And take it from Cassandra whose age, experience and potent gut feeling qualify her to judge situations, the improvement is due to President Biden’s leadership against that of Trump. Kudos go to Biden mostly for his selection of experts in relevant fields heading various government departments; selected solely on merit and matching the need; not considering relatives, sycophants, ethnic origin of the selected Americans. And he is totally receptive to expert advice. Judge his Secretary of State – Antony Blinken – a polar difference from big brash Mike Pompeo, in the mould of Trump. See how Dr Antony Fauci speaks now to the American media as shown us by CNN. He is confident; knows he is respected and trusted as Chief Medical Advisor to the President and also Director of the National Institute of Infectious Diseases while with Trump he nearly had his head cut off for making statements about the pandemic contrary to what Trump wanted to hear. In this context why Dr Anil Jasinha was transferred as Secretary, Environmental Ministry, is still a mystery, since we Ordinaries do not believe it was a promotion. He did magnificently well, with the Army Commander and others in minimising the damage of the first C19 wave.

Many in Colombo are due for the second dose of AstraZeneca vaccine. When will it be given? We were lulled to complacency being told some time ago that the second dose was safely stored in time for vaccination three months after the first. Now we find the medical department’s cupboards are as bare as Mother Hubbard’s as regards the A-Z vaccine and there’s begging going on for the WHO to shower enough of this vaccine on poor Siri Lanka. Threatened is a cocktail of merrily mixed AstraZeneca with Sputnik or the Chinese vaccine. We all shout: No thank you!

We do sympathize with the government battered on all sides and reduced to begging. We appreciate what is being done, but go mad when we hear statements like “Development must go on” when development is a speedway to Ratnapura and purchase of helicopters.

Many approve of the move to lockdown regions and Grama Sevaka divisions and now even provinces since locking down the entire country is really too drastic a measure even though it will reduce mass infection.

Wise experts give of their expertise all the time.

The major issue that confronts the government at present is imminently losing the battle of the Covid 19 pandemic. Next, of course, is the mess of the second vaccine for which blame lies on the government. Then the fast-declining economy and solutions thereof, one solution being import of tourists and asylum given to those fleeing India. For this obvious blunder, blame is squarely on offshoots of the government like hoteliers, travel agents and leading the lot, Udayanga W with his Covid barrier-breaking influx of ‘ballooned’ tourists from Ukraine, one of the worst affected countries. The ‘balloons’ burst no sooner they landed in Paradise and were taken traipsing around Resplendent Sri Lanka.

Another disturbing situ inaugurated by the Prez himself is the fertiliser issue – his overnight banning of chemical fertilisers, to save farming community from kidney disease and win laurels as first country to ban such. Misfiring. Tests have shown the use of these fertilisers is not the cause of KDC. More damning: the sudden ban with no substitute organic fertiliser in large quantity will badly affect our primary cash crop and from the next Yala harvest itself our stomachs will rumble with hunger pangs and the poorer will surely starve. Nothing must be done with the sweep of the pen or the gush of words of command.

And here is Cassandra’s bone which she picks with the government. Experts abound in this country of intelligent people. They are not, apparently, consulted before decisions are made. As Prof, Rohan Rajapakse writes in his article Ban on agrochemical: where are we heading? in The Island of 11 May: “Three eminent scientists, namely Dr Parakrama Waidyanatha, Prof O A Ileyperuma and Prof C S Weeraratne have effectively dealt with the repercussions of the ban on chemical fertilizers.” (He gives their credentials in full). Prof Rajapakse goes on in his article to the sphere of pesticides and warns about that too.

No politician or army high-up nor even the Prez knows it all. So experts must be hearkened to, to serve the country and save its people.

Ubiquitous

Have you noticed as Cass has that the Minister of Sports and Youth is seen at very many meetings and exhibits involvement in fisheries, the environment, even the economy; far extended from his sphere of sports and youth. Latest sighting (Tuesday May 11) was him on TV news inspecting the marvelous hospital constructed in a couple of days by hard working, skilled young men. It will be manned mostly by young girls, nursing Covid 19 patients, at risk to themselves. So, Cass praises this young minister for being so interested in the welfare and well-being of the Ordinaries – we the people of Free Sri Lanka. A sports writer in the gossipy column on the last page of The Island of 12 May, gave him a paragraph, not complimentary like Cass’ paragraph (this). Also, we do not approve at all of exercise equipment being set up in villages. The villager has enough exercise in his farming and his spouse in house and garden work. Such centres, said to be open air, will only attract gawkers in their numbers, and laughter. Of course, someone will make money.

Dire danger of military in power

The youth of Myanmar are demonstrating to the entire world what the consequences are of military men ruling countries. Pro-democracy leader Daw Suu Kyi was given one term of half governing the country as Counsellor; the second time she and her National League for Democracy won a landslide victory. She worked with the army leaders and going along with them – a la the Rohingya – was derided as a Nobel Peace Laureate.

The November 8, 2020 elections gave her Party a bigger majority. Then power was snatched off her and she was held hostage god knows where. (She suffered long years of strict house confinement after her first victory.)

The youth of the country rose up for democracy and for Suu Kyi being released. Listening to excerpts of conversations with two fighters for democracy – male and female – on BBC, Cass was overwhelmed with a fifty-fifty, long lasting spurt of emotion: sorrow and admiration for these young uns. Bless them and may they win the battle for a right of every human being – freedom from oppression and dictatorship. But these kids are being shot at with live bullets and more than fifty (if remembered correctly) are dead. Why-oh-why are base men so greedy for power?

The young of Hong Kong also fought unrelentingly but they were imprisoned and not killed deliberately. Their battle is against the growing power of China where a dictator resembling a military man rules supreme.

A bright spot

In media, whether print or visual, we long for news with optimistic effect to drive away, even temporarily, the doom and gloom that envelops us. Cass had her descending-to-depression spirits uplifted by watching a video clip of the Queen declaring the new Parliamentary sessions ‘open’.

Here was the mid-90s Sovereign walking steadily with her eldest son beside her and reading her speech about what ‘her government’ and ‘her ministers’ would do for the country in a steady voice with steady hands holding the script.

Top on this list was fast recovery from the pandemic followed by environmental, health and educational betterment. She hid signs of emotion that would have battered her because for almost seven decades she came in with her beloved Philip by her side at this ceremony.

Cass took courage from this marvelous woman.

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