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.