Patient Advocates

This week's commentary focuses on the concept of patient advocates. These are individuals who were usually affiliated with a hospital with the purpose of advocating terms of the patient's. Generally, or at least on paper, it seems like a great idea. Many times patient families are not up to the task of advocating on the behalf of family members (with the exception of advanced directives, regardless of how futile treatment may be). The one drawback to having these individuals advocate on the behalf of patients is that they are not medically trained and usually not knowledgeable in science in general.

One key example takes me back to another month I was working at the VA. I had an individual who was a Jehovah's Witness. For this of you who have not have to deal with these patients, they simply are not allowed to take any blood products because is seen as sacrilegious. You can imagine how much of the nightmare it becomes when they are involved in automobile accidents. With this particular individual it became apparent that he recently had a myocardial infarction. He also had developed a lower GI bleed and his hemoglobin was steadily dropping from approximately 9 g/dL to 6 g/dL (males normally are above 12 g/dL). The individual obviously had made up his mind and would not accept blood transfusions.

Once the patient makes the decision, there is usually nothing I can offer as an alternative. However, the following day I was visited by a patient advocate. This person represented the Jehovah's Witnesses and handed me brochures regarding the alternatives to blood transfusion. This individual was not very knowledgeable on alternatives but he was able to hand me the brochure. One of the more practical alternative as listed in the brochure was the initiation of iron therapy, and we already had the individual on it. We also had the individual on Epogen, but the way it was advertised in the brochure was pretty irresponsible.

For those of you who do not have experience with this drug, it is administered weekly and a one-year supply of the medication can run approximately $30,000. The problem I had with the brochure was not that it suggested it as an alternative, but it was that it was advertised as being readily available like running water. In reality, even the best clinical studies indicate roughly a two week minimum before you can see any increasing hemoglobin, and at that it would be approximately 0.5 g/dL. The patient advocate made it sound like getting this drug would be tantamount to a blood transfusion. It is not.

When the patient's hemoglobin was not increasing as much as he had hoped for, the patient advocate demanded that I give more Epogen. I am not sure whether this individual understood basic math, but he was not willing to wait the time and figured that more of a drug is always better. Every day when I went to talk to the patient I would have to talk to the patient advocate and also let him know that this was the extent of what we could provide. I think it was appropriate for the patient to have someone to ask questions, but for someone to make demands is a little too much to swallow.

This is just one isolated case, there are many more cases at our hospital where patient advocates have come in the way of patient care. It is almost as if the patient advocates seek to minimize the influence of doctors in patient care by trying to fill the heads of the patient's with artificial hopes and outcomes. It is very unfair to anyone in the medical establishment to have to deal with this added variable of complexity. If patient advocates had some element of training or competency in medical science it would be very easy to deal with them. But the majority of them are simply individuals who enjoy making demands. Patient care should definitely be about patients and doctors, it is time to cut out the middleman!