Treatment of ESKD is based more on improving numbers rather than quality of life. There is a mismatch between what doctors consider important and what is important to patients. The recent SONG initiative that was instituted to determine the outcomes that should be tracked in any research going forward found a huge disparity between the outcomes that matter to the two groups when it came to hemodialysis.
While the top two outcomes that mattered to patients were Ability to travel and Dialysis-free time, the doctors thought mortality and hospitalisation rates were most important. This should be a wake up call for medical professionals. They’ve got it so wrong.
As a patient, I can fully relate to the findings of the SONG initiative. To me, how long I live is not as important as how well I live. To keep a patient alive using any means, irrespective of what it takes is a horribly wrong way to think about things.
Far too many people with ESKD die in ICUs hooked to a million different machines, with broken ribs as a result of resuscitation efforts. The last sounds they hear are of panicking doctors and nurses and beeping machines. Compare this to a peaceful death at home surrounded by your family, listening to soothing music and quietly slipping away. What would you prefer? This is a question everyone in ESKD care needs to ask themselves.
Conservative care should not be a bad word. It should be treated as an acceptable alternative. Let us face the reality. Many people do not want aggressive treatments at some point in their life. Many people cannot afford dialysis. In India, 85% of people who need dialysis do not get dialysis because of the lack of access to treatment or lack of funds to pay for the treatment; often both. Currently, since nobody talks about conservative care, these people are abandoned, left to die.
Take patients who can afford treatment but are old and frail and have a host of co-morbidities. Today’s healthcare system will try to squeeze every rupee they can from the family and try to treat the patient with aggressive modalities like dialysis. Families do not want to be burdened with the guilt of not ‘doing everything possible’. What happens as a result? The patient is made to suffer the pain of dialysis for days and weeks without any consideration for what their wishes are. I have seen people hate every second of the treatment but yet have to go on, hoping that the end would come soon. Why this torture?
Conservative care needs to be discussed with the patient and the family in both the above circumstances. It needs to be presented as a reasonable option. It should not be looked upon as an ‘abandonment’ but as an acceptable alternative. There should be four treatments discussed with them - hemodialysis, peritoneal dialysis, kidney transplant and conservative care. They should be made to understand that conservative care will involve visits to the doctor, blood tests and other investigations and medications which would ease symptoms. It should not be seen as a ‘lesser’ option.
However, I am gloomy about this. In a country where even a therapy like Peritoneal Dialysis is not discussed with newly diagnosed patients, will Conservative Care even be considered? Until healthcare systems become more mature and genuinely more patient-centric, thousands of ESKD patients will continue to die violent deaths in ICUs when a peaceful passing at home could easily have been made possible.