However, patients are often more bothered about other things. For dialysis patients, things like itching, lack of sleep, pain and depression could be really bad. These do not come in mainstream medicine that is practised by nephrologists. So, little attention is given to these symptoms. However, in the patient’s mind, these symptoms often take a disproportionate amount of attention. Eventually their Health related Quality of Life (HRQoL) plummets. In India, this is very rarely talked about, forget about measuring and treating it.
This image (taken from the Executive summary of the KDIGO Controversies Conference on Supportive Care in Chronic Kidney Disease) beautifully illustrates the continuum of supportive care.
The blue area is regular care which could include things like dialysis. The green area is supportive care - care that treats symptoms that may not be life-threatening but very important from the patient’s perspective. As you can see, supportive care should be there right from the beginning. Typically, the needs for supportive care increase with duration of time on dialysis. After a certain point of time, hospice / palliative care is the only thing that is recommended, not aggressive therapies like dialysis.
Unfortunately this aspect of treatment is grossly ignored today. This results in low HRQoL scores of patients which if measured, would scream and say that some important things are not being addressed. The focus of treatment should be the patient, not the patient’s blood test reports. Of what use are normal blood tests if the patient is not feeling good? It is important that the patient feels better and is positive about his health. Most patients value things other than what their doctors think they value. This is a fundamental truth in today’s healthcare being practised around the world.
This is like the famous Birbal story where there was a man looking for a ring under the lamp post even though he had lost it elsewhere just because there is more light there. It’s time we looked in the right place.