Jubilee writing challenge: Information
Disclaimer: this is based on personal experience, outside Finland.
European Code of Cancer Practice stated that patients have the right to receive reliable information about their disease from a medical team, as well as other sources, such as the patient and professional organizations.
Patients are entitled to be informed about the benefits and the risks of treatments, and the health institutions may refer them to the patient organizations to receive support. However, what information and how much information the patient would be willing to know, depends on each individual.
This topic resonates deeply with me as I had been in the position as a patient, a family member of cancer patient, and a caregiver. It is more than what or how much we receive information but also how we perceive the information.
Receiving and perceiving
I had a tumor when I was in primary school. I have only a vague memory of how I was diagnosed, but I could remember that I did not have many worries because I had no idea about a tumor or a cancer at such young age.
My parents told me that I had the tumor and I had to go through chemotherapies and the treatment process could take months, but I had always had a positive mindset that I would recover quickly. I was quite curious about my CT scan or blood test results and I tried to ask my parents to explain what was written.
Luckily the results were pretty ‘good’ overall. Surely, I was nervous every time I went to have a consultation with my doctor but I had little worries. I was just a little girl.
When I was in middle school, my father was diagnosed with the last stage of colon cancer. The cancer had spread to other areas of the body. The doctor said that we needed to prepare ourselves as we might lose him any time.
How did I react? At first, I was not worried at all. I had gone through a similar thing and I was fine. I recovered well and went back to school like other normal kids. Dad will be fine. Dad will get better after his treatments, right? Well… I was naive. I lost my father a few months after that.
About one and a half year ago my mother was diagnosed with incurable brain tumor. Yes, it seems like cancer and tumor like our family so much. This time I am an adult, or at least my age says so.
After the doctor told me about the situation, I had only worries. I worried about our financial situation, treatments, care given at home, how to get prescribed medicines, how the dynamics within the family would change… just to name a few.
I tried to look for as much as information I could find on the internet about the disease. The technology helped to find all types of information, from general information to scientific journals that can be accessed just by one click. But it seems it was never enough. Why? Because I had to make decisions.
I did not know which hospital or doctor would give the best result for my mother. I did not know whether recommended treatments would work. Will the insurance company cover all of these? All the information was available on the internet; however, none could give me the assurance of how a decision will turn out.
I perceived information in a different way when I was a kid, compared to now. Even with very little information I received as a kid about my disease, I perceived my life to be hopeful. I believed that my father would beat his cancer.
Meanwhile, now as an adult with access to unlimited information, I find myself to perceive the world in a different approach. I can strongly say that with that information, I had certain degrees of confidence to make difficult decisions. At the same time, I lost myself between ‘being realistic’ and ‘being pessimistic’.
What and how much
I still remember that day. I was told by the doctor about my mother’s MRI result. It seemed to be an aggressive brain tumor. However, we had to do a biopsy first as a next step to be able to know in more details about the disease.
The doctor also told me about the statistics; how long a patient with the disease can live after the diagnosis, the survival rate, and the chance of recurrence. I was not ready to digest all the information, even though they were told on general level.
Many questions were going through my mind about the tumor and the treatments but at the same time I was like “Could we talk about this further next time? I need some time to understand what is going on first. I do not understand many things, can I think for a while.”
As a family member, I have the right to receive information as much as I need and want. Nevertheless, it depends on individual how much information he or she wants to know. Sometimes I do not want to know about survival rate because it just makes me anxious but this information is seen a lot on the internet. It is just… everywhere.
I also remember one cancer patient, I knew, said, “I do not want to know how effective this treatment would be for me. I believe my doctor knows better and I don’t want to worry about that.”
I understand him. If I were him, I would also just want peace of mind so that I could sleep at night without having worries about my disease.
I kept thinking if I were in my mom’s position with serious illness, would I like to know my real condition? Would those information help me to make better decisions for myself? Or would it only make me more miserable by picturing myself to become a number in statistics. Isn’t it easier to trust health professionals who take care of me? But how if I am not able to make a decision for myself.
When I am physically unable to decide for myself, my family members will take over as decision makers. How would I feel? I have not found the answer yet.