Research question has been changed to :
Medical as a discourse community with a focus on: How the patient feels about how the physician talks to the patient vs family. Whether the patient has compliance vs noncompliance with what the physician requires?
Categories:
Compliance:
- Communication: MC talks about how her physician wants her to try many medications to see if MC tolerates any of them.
A: What does the doctor say when you say you won't take that crap anymore?
MC: Sometimes he tries to give me another medication. Try this one, try this one, but the results it's particularly the same. Pain in the stomach, sick, but he tries to always help me. Sometimes the medication works and I accept better than the last one or I reject it. It all depends on my body, if it accepts it or not. But I always try to tell him that I do or don't do well and he helps me. I can't say that he doesn't when its not true he has always helped me. At times we become stubborn, but we move forward. But I always take the medication he gives me and I try to explain my reaction whether good or bad.
Fear: Within the interviews A asked a followed up question about what MC doctor says and MC interrupts A and goes into what she's afraid of.
- Taking medication: MC is complying with the treatments her physician prescribed for her medical condition.
A: What medication?
MC: Ahhh... it was so long ago. I took all possible type of medication for various treatments. It was cortisone, pain medication for inflammation, sleeping pills and...
*Please note I did not take anything away from this interview, this is her response which I feel is significant to the study and how it contributes to this category.*
A: Tell me a story when you were happy with the treatment, your physician prescribed to you?
MC: In the beginning when I first began taking the injections what's the name?
A: Humira
MC: Humira, I was, I thought that I got to the moment of bettering my condition, but unfortunately it only lasted about one or two months and then it went back to the beginning.
A: Describe to me more of what you mean about being happy with this treatment?
MC: Oh, because I stopped having pains, my blood levels were stabilized, my hemoglobin wasn't that low and I was in a better state. I was able to live my life freely. I still worked. After the day of 19th of December 2012, it was when everything happened.
A: And with this treatment of the Humira, how often did you do this treatment and for how long?
MC: It was once, one injection, every two weeks for two months. But on the second month, half way through I began feeling tired. I would become really tired especially after going up a flight of stairs, whatever little thing I would do, I felt tired. So I went to the doctors and the doctor said I can no longer take the injections because it wasn't helping, it was only harming me. And from there on, I kept going to the hospital, receiving blood transfusions.
In the first interview, A asks when MC did not comply to her doctors requirement, but the answer given by MC indicates both compliance and noncompliance when taking Prednisone, a steroidal medication.
A: Okay, Can you tell me a story, when you as a patient did not comply to the doctor's requirement for your treatment?
MC: No, I haven't failed with any treatment given by my doctor. Just the Prednisone, I never liked that medication. I tried to take it, I'm not saying daily (noncompliance), but there were weeks that I would take it the full week, (compliance) but there were other weeks that it wouldn't settle right with me.
A: Could you tell me more about your experience every time you are given a new medication to try for your treatment?
MC: If the doctor says I have to take it then I take it. But it's the side effects of that medication that I have to see to discuss with the doctor about how I feel, if I feel well, if its the same thing as not taking anything and with his experience he tries to help me. Certain new situations, I never refused taking it, at times I say I don't want it, it tastes horrible, I have stomach pains, or I'm not going to take that crap.
- Procedures: In my ethnographic study, it shows how MC, the patient goes every week to the Hematologist's office to check her blood count. This is considered as a procedure. In the interviews conducted MC speaks to A about the various procedures she goes through with this medical condition.
A: Now that you mentioned that, Tell me about your experience every time you are required to go to the hospital and how it effects you every time?
MC: Every time I end up going to the hospital, it effects me morally, physically and mentally because its not one or two times, it's various of times that i undergo the same procedure and every time I tolerate less each time.
A: Speaking about transfusions, could you explain t o me how you feel every time you get iron transfusions as well as blood?
MC: When I get iron and blood, the first and second day I feel my immune system down, but little by little as days go by I begin to feel more strength, I am able to do more things around the house. And my state of being is different. Just walking is the hardest thing for me because my bones hurt me a lot still. I do have medication for pain (inflammation), but it hardly helps me.
MC mentions Endoscopy's in her response to one of A's question. An endoscopy is a procedure, to look inside a person's internal organs using an endoscope.
MC: Ahhh, it's a critical medical condition because majority of the time I'm afraid to bleed, end up in the hospital, get blood transfusions. I need to do the treatment I need to do like go for Endoscopy's, cauterization. All of this. I can't live normally, I don't have quality of life.
A: Hmmmm, How has your medical condition affect you and your family, in terms of following with what the physician recommended?
MC: Only when I do the Endoscopy, everyone wants me to automatically drink the famous solution, its the solution that protects the stomach. But on the first and second day, I just can't put that solution in my mouth. Just by that there's disagreements, one says drink it, another says drink and another one says drink it, but I can't. I have to scream and say, "Stop it, let me, my head alone."
Non-Compliance
- Side Effects: In the first interview A asks a question about a time that MC did not comply to her doctor's requirement.
A: Okay, Can you tell me a story when you as a patient did not comply to the doctors requirement for your treatment?
MC: No, I haven't failed with any treatment given by my doctor. Just the Prednisone, I never liked that medication. I tried to take it, I'm not saying daily, but there were weeks that I would take it the full week, but there were other weeks that it wouldn't settle right with me.
In the second interview A asks MC a question about sleeping pills and why MC doesn't like taking them.
A: How come?
MC: I don't like it, I never did. I feel sick with sleep pills or relaxers. Just the state of being apathetic and not have a sense of anything. The silence is horrible.
- I know more than the doctor:
In this particular case MC explains through her point of view that she may not know a lot about medicine, but she knows how she feels while taking the medication.
A: Speaking about your physician, Tell me more of when you and your physician wouldn't see things eye to eye when it comes to your condition.
MC: When I don't agree with the doctor, neither is the doctor in agreement with my opinion; which in reality I don't know anything about medicine, but I feel my body and system, what's wrong. And sometimes he says its mentally and I say its not and he says that I have to take medication to sleep and I hate sleeping pills.
***
A: And what would your doctor say when you would....
MC: He would say that I'm stubborn and I said stubborn is you because I know what I feel. I know that I have no knowledge about medicine, but you don't know everything about my body and the way I react or not. I began the treatment to a certain point, but after that point I can't do it. And at times we have our encounters because I say one thing and he says another. Because of the blood sugar levels was making me scared of eating, afraid it'll rise. He would say it was all mental, it was me being paranoid. I'm none of that, absolutely nothing.
A: Okay
MC: Afraid yes, I was afraid of eating, that part yes. I was afraid because of my diabetes. Now a days when I do Endoscopy's, is when I feel nauseous, I don't want to eat, but that is normal, but there was a time that I wanted to stop eating because of my diabetes. And he would say I'm stubborn that I needed to eat, I know I needed to eat, but at the same time I was afraid of my diabetes.
Also MC lives in a constant fear because of her medical condition. She lives in a constant fear of her hemoglobin dropping from the normal range. She explains that she's afraid that she will bleed or her hemoglobin is low because if these two things happen then everything returns to the way it was before; which means being admitted to the hospital and having transfusions.
A: Tell me a story when you weren't happy with the treatment your physician prescribed to you?
MC: Someone with the life condition that I have is never happy because I live always being worried, if its today I'll bleed or is it tomorrow my hemoglobin is low. If it's low, everything turns to be the same. It's transfusions, hospitals. It's a life that I have no quality at all. I can't do certain things that other people can do, I can't work. I have to do things much slower, yet I bleed. Many things I no longer can do, it's difficult.
Sets of stories to analyze: Conflict and Agency
- Conflict:
-Medicine vs. side effects: MC tried the medications that her physician prescribed to her. She would take them in hopes to feel better, but after a certain amount of time MC's body wouldn't tolerate it.
A: What type of treatment?
MC: Ahh...it was so long ago. I took all possible type of medication for various treatments. It was cortisone, pain medication for inflammation, sleeping pills and...
Side Effects:
A: Could you tell me more about your experience every time you are given a new medication to try for your treatment?
MC: If the doctor says I have to take it then I take it. But it's the side effects of the medication that I have to see to discuss with the doctor about how I feel, if I feel well, if it's the same thing as not taking anything and with his experience he tries to help me. Certain new situations, I never refused taking it, at times I say I don't want it, it tastes horrible, I have stomach pains, I'm not going to take that crap.
A: Okay, How has your doctor described to you what your case is in regards to your condition as well as if he has or had any case's that is similar to yours?
MC: He has similar cases like mine, but they can take other medication that I can't take because my body rejects and the other patients have a life, a quality of life better than mine. Because I have Lupus. If I don't have the problem of always going to the hospital, receive blood, have transfusions, ahh, my bones hurt, I have poor quality of life.
A: Speaking about your physician, tell me more of when you and your physician wouldn't see things eye to eye when it comes to your condition?
MC: When I don't agree with the doctor, neither is the doctor in agreement with my opinion; which in reality I don't know anything about medicine but I feel my body and system, what's wrong. And sometimes he says its mentally and I say it's not and he says that I have to take medication to sleep and I hate sleeping pills.
A: How come?
MC: I don't like it, I never did. I feel sick with sleeping pills or relaxers. Just the state of being apathetic and not have a sense of anything. The silence is horrible.
A: Explain to me a situation when you and your physician didn't see eye to eye?
MC: It was when I began taking Prednisone that makes your blood sugars go high. It was that when my blood sugar levels were becoming high and I didn't want my levels to be high. So I would avoid eating so my levels wouldn't be so high and he didn't want that, he wanted me to eat and he gave me insulin, but I was never satisfied about taking insulin because its been years with just the pills and never did it pass the levels of 130, the max 150 if that. But with Prednisone, it started going to 300 levels and I didn't want to take insulin. But the doctor kept insisting that I needed to take it to help my blood sugar levels. I took it, he began increasing the insulin dosage and more and more, until I started feeling sick. That was when I told my physician that I can't handle this much of insulin I feel sick. But you have to take it and I said No because I feel sick.
A: What would you feel when you would take insulin?
MC: Just feeling sick. I felt like throwing up, very dizzy, ringing in my ears, it was a combination of symptoms that would put me nervous.
A: Okay, explain to me one more time what is your medical condition?
MC; Starting with the immune system not working well, becoming autoimmune. Everything becomes low. The worse is I begin to bleed and I have malformations on the veins in my stomach, the most difficult becomes because I begin to bleed, everything due to Lupus. It attacks the stomach and every time it attacks, the veins burst and I begin losing blood.
At times it'll take awhile like one to two months and suddenly the hemoglobin goes down. Everything goes down, my white blood cells, red blood cells, platelets, potassium, hemoglobin. I can't tolerate pills, capsules because it affects me my stomach. Everything has to be injected. All of this makes it difficult for me. I have to tolerate more, taking the potassium is no joke. If it's intravenously it burns so much, if it's solution it tastes disgusting. I have never had anything that can taste worse than the potassium.
- Doctors order vs. How MC's body feels:
A: Explain to me a situation when you and your physician didn't see eye to eye?
MC: It was when I began taking Prednisone that makes your blood sugars go high. It was that when my blood sugar levels were becoming high and I didn't want my levels to be high. So I would avoid eating so my levels wouldn't be so high and he didn't want that, he wanted me to eat and he gave me insulin, but I was never satisfied about taking insulin because its been years with just the pills and never did it pass the levels of 130, the max 150 if that. But with Prednisone, it started going to 300 levels and I didn't want to take insulin. But the doctor kept insisting that I needed to take it to help my blood sugar levels. I took it, he began increasing the insulin dosage and more and more, until I started feeling sick. That was when I told my physician that I can't handle this much of insulin I feel sick. But you have to take it and I said No because I feel sick.
A:And what would your doctor say when you would...
MC: He would say that I'm stubborn and I said stubborn is you because I know what I feel. I know that I have no knowledge about medicine, but you don't know everything about my body and the way I react or not. I began the treatment to a certain point, but after that point I can't do it. And at times we have our encounters because I say one thing and he says another. Because of the blood sugar levels was making me scared of eating, afraid it'll rise. He would say it was all mental, it was me being paranoid. I'm none of that, absolutely nothing.
Agency:
- MC felt she had agency:
A: Describe your condition in more details? Tell me how your symptoms were in the beginning of your medical condition up to now?
MC: In the beginning I felt well. I didn't have problems, didn't bleed, didn't need blood transfusions, didn't have shortness of breath, I didn't feel pain on my bones. I had a normal life like any other person, I worked.
A: How many hours did you work?
MC: I worked 30 years, I did my home life entirely. I would cook for the family. Little by little, I became tired, I would become tired more. I didn't have any force to leave the house, to go out and take a ride with the family. I had pain in my bones.
- Willingly takes medication to feel better:
A: What medication
MC: Ahh..it was so long ago. I took all possible type of medication for various treatments. It was cortisone, pain medication for inflammation, sleeping pills and...
MC was willingly to take insulin to control her sugars, but she was never satisfied about taking it. MC took it, having her insulin dosage increasing until she felt sick.
- Asserted Agency: MC would avoid eating while she was on Prednisone because MC was afraid that her blood sugar levels will keep increasing if she would eat.
A: Okay
MC: Afraid yes, I was afraid of eating, that part yes. I was afraid because of my diabetes. Now a days when I do Endoscopy's is when I feel nauseous, I don't want to eat, but that is normal, but there was a time that I wanted to stop eating because of my diabetes. And he would say I'm stubborn that I needed to eat, I know I needed to eat but at the same time I was afraid of my diabetes.
- Tried to assert agency: Argue with doctor:
A: Speaking about your physician, Tell me more of when you and your physician wouldn't see things eye to eye when it comes to your condition?
MC: When I don't agree with the doctor, neither is the doctor in agreement with my opinion; which in reality I don't know anything about medicine, but I feel my body and system, what's wrong. And sometime's he says its mentally and I say its not and he says that I have to take medication to sleep and I hate sleeping pills.
A: While under treatment, have you every disagreed with his regimen? If so, describe the reaction of the physician as well as yours?
MC: Its not the disagreement, it's the anger that I feel inside. I do the treatment that my physician gives and it doesn't resolve my life, it's not one of my failures its the anger that I have inside of me. All of the trying, the medications force myself and all of a sudden it goes back to zero.
A: Can you describe your doctor's reaction?
MC: My doctor has patience with me, sometimes he says that I put things in my head, that I shouldn't put things in my head, but only who is a patient with the condition I have, understands. I can't go against him because he's my doctor, he has taken care of me until now and never turned his back to me, he always supported me. Sometimes I complain with him, sometimes he complains with me. But we keep going.
- Felt she did not have agency:
A: Through your experience with this medical condition, what frustrates you as the patient and physician the most about your condition?
MC: The frustrating part is that we've tried everything such as pills, relaxers, injections and nothing. It helps, what two, three days and it goes back to beginning. Just like me and my physician we become frustrated because we try and there's no improvement with me while other patients, that are there with the same condition, but without the system having a lot of problems, internally, doing the same treatment as I am, improves for them. And how come it doesn't in me.
So I ask him the questions: Why doesn't it work for me?
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