End Stage Renal Disease Patients, Doctors and Trust

End Stage Renal Disease (ESRD) patients require different level of attention and different level of trust between doctor and patient. For several reasons. They can weaken quickly. Imagine they walk to dialysis room and soon after they get getting to dialysis they get sleepy and tired. They feel drained. They feel no energy is left. They walk in with smile and they leave with a tired face. Doc has to understand it. We should brief for them what happened during their dialysis while they were sleeping through it. It helps them to feel and become part of this treatment. If they look too tired after dialysis and they do not want to talk as much, that does not mean that they are moody patients. It may mean that they just got very drained.

They have pain in their body. All over the body. It is real. We need to believe that. Hyperparathyroidism, osteomalacia (while phosphorus is high), microfractures, adynamic bone disease, muscle spasms, muscle necrosis and atrophy, being irritable, constant puncturing of the veins and vascular accesses, chronic pain syndrome, neuropathy, side effects of medications, chronic nausea due to medications and the disease, depression, lack of sleep at the right time, restless leg syndrome, falls, and several other reasons induces either chronic pain or low threshold to pain in these patients. These are real. We need to understand it, believe it, and be with them when they need us to help them with their condition.

Blood flow and volume removal adjustments. It really matters. It matters on one side to get the best KT/V and fluid adjustment. And on the other side most of patients symptoms during dialysis is just because of different rates of blood flow and volume removal. A smart dialysis patient senses changes in the body and associates it with changes in blood flow and fluid removal rate. They learn that different filter may have different fluid removal and dialysis profile. We better respect their opinion. They always have a point. Slow down the speed of your round doc, and listen to your patient. You may know the formula but remember you are applying it to their body. Be patient and understand they have the right to know what is going on. Do not get mad easily and do not tell you are the doctor because you are the doctor for the patient and patient needs to know what the deal is.

Trust and confidence is specially very critical issue at the time we need to decide about initiation of dialysis. Try to earn it. Very critical time. Remember we are telling a patient that your life is going to completely change. Completely. You will have several hours a week that does not belong to you anymore. It belongs to dialysis. You will have no urine after a while. You will be dependent on this machine in order to survive. We know our hands and legs belong to ourselves. And we know we have some organs in the body. Now we are telling the patient you have another organ which is not in you. It is next to you. Which you do not control it, the medical group controls it. And in order to get a good result you need to follow the advice of medical group. Trust me, these are major life changes. Give the patient some time to get through this major challenge of signing in for a dependency. They only do it because there is no other option at that time. As medical professionals we need to know that we should put a patient in this dependency only if it is vital. On the other hand we should not delay till they get harmed.

Understand that major certain elements of a normal person’s life is seriously damaged in a patient with ESRD. Daily activities, jobs, sex, relationship, endurance, persistency, independency, and many things are all poorly functioning or totally disabled in these patients. These patient are still so strong that they can smile. Remember this when you see them being nice to you. They are trying to be hero. They are trying to be successful in dealing with these new challenges while their resources are getting very limited. They should look at you as resource. Again try to earn it. We have to have respect for these heroes.

Our new lives as doctors and medical professionals with limitations of bundling and so on. As much as possible choose the best for your patient. If you can share with them the options in a realistic way. It does not help the patient if we tell them the only thing that can help them is for example drug A and we cannot write it due to limitations of bundling. If drug A is that important do your homework first. Talk to the dialysis company or patient’s social worker and insurance. See if you can arrange it. There might be a way to get it available. Do not put all the burden on the patient. They are already looking at life through a very small hole in the door. Do not close up that hole.

Alireza Atef, MD, Dallas, Texas

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