My grandma was a trendsetter. She was the first woman in town to wear trousers and she always said a woman wasn’t made to stay at home all day and got a job, plus she made the best meals ever. Christmas eve in 2005, she was feeling quite depressed. She didn’t want to take care the cooking and nothing seemed to cheer her up. In the next few weeks my grandma got a lot worse, she started moving awkwardly, in a very clumsy manner, and she entered catatonic states plus she got disoriented a lot. We went to the doctor, who assigned her a series of tests as well as visits to specialists, changes on medication, etc. After a while, she was diagnosed with depression and a bipolar disorder. The medication left her sitting on a chair, unable to move and barely able to say a word. This period was so bad that she can’t remember most of what happened (she doesn’t remember anything about the day my sister got married, just from the pictures). We were really unhappy with the diagnostic and the strong medication that had left my grandma numb, so we turned to the internet for information. We spent a lot of time with her, so if there was something the doctors had overlooked that could help clarify the diagnose, we had a big chance of finding it out.
Six months after her first hospital visit, my mother remembered reading something at work a couple of years back (she is an agricultural engineer) about the mad cow disease and how to diagnose it in humans. The text also mentioned that the symptoms must not be confused with those of dementia with Lewy bodies, which were similar. My grandma had most of the symptoms so my mother told the doctor about dementia with Lewy bodies in the next visit, but he didn’t pay much attention to it, then she told rest of the family. We kept researching and about 6 months later, my father and his brother decided to stop giving my grandma medication and told the doctor he had to review the diagnosis. She got much better in a matter of days and, in the end, the doctor agreed to change her diagnose and now my grandma has dementia with Lewy bodies, but she can have a conversation and she remembers us. The doctor wasn’t a bad professional nor had anything against us, but his priority were the 40 patients he still had to diagnose and give treatment to, while for my family and I, our only concern and worry was my grandma. In another note, I have to say that doctors and nurses CAN make mistakes, its only human; even I “failed” as I wasn’t the one who found the diagnose for my grandma. The topic is completely taboo in the medical world and generates great pressure and an extremely unhealthy approach to failure (we will have to discuss this in another topic, together with why getting a second opinion shouldn’t be seen as a threat or failure by the doctor).
When a disease is diagnosed, a change of priorities occur to the patient and his family: all of a sudden there is great interest on “x” part of the body and disease “y”. This interest brings them to seek information to understand what’s happening to them, if any friends or relatives had it before, the possible treatments, if it’s life threatening, etc. Many of them end up in forums with other patients that had the disease (or live with it, if chronic) and share with each other their knowledge. The patients find these pages great because the information is first person, clear and direct, as e-patientDave puts it, “patients know what patients want to know”. In this process I see a lot of potential not being used by the healthcare services, as these many brains are coming together with one common goal, to get reliable information about what is happening to themselves or their loved one. I have a lot of faith in professionals and their competences, but we also know that hospitals are up to their eyes with work, so it is not realistic to think we can dedicate an individual’s problem the same time his family or himself can.
The Internet has brought to patients resources to find out about their diseases and treatments, as well as support groups online. Many patients end up being experts in their own disease and want to share their experience and knowledge with others in the same condition. Many healthcare professionals don’t see this as good practice for the patient, because they can often get confused with the amount of information there is and end up with the wrong idea about their diagnose which difficult the healing process, the adhesion to treatment and their general mood.
But just because we cannot control all the information on the internet we should forbid patients from doing research or banning these pages (SOPA style). I think the answer is, as healthcare professionals, to provide patients with the appropriate resources and guidance when looking for information on the internet.
In my opinion things haven’t changed much in healthcare when it comes to empowering the patient (or in case of handicap, his family), because many professionals don’t understand that the patient is playing the leading. We need to change the chip and stop seeing patients as “poor them” and understand that health is one’s responsibility and let individuals take part of it in the illness process as well as the staying healthy one.
Little by little, in the same way that healthcare professionals were introduced to the importance of prevention and staying healthy, they are now being introduced to the importance of empowering the patient, allowing patients to participate in the cure process of their disease and play the leading role in the process.