Angeline Ti
Epi 240
Assignment 2: analytic diary
My group reviewed a 5-page selection from a focus group on making difficult decisions. We pulled out the following themes that stood out to us:
- Descriptions of the process
- Support
- Factors affecting decisions
- Information
- The role of time
- Quality vs quantity
- Side effects
- Drawing from previous experience
- Family
I chose to focus on the first theme: descriptions of the decision-making process. I found the following excerpts from the data to be relevant to this theme (annotations added):
“I had to make the decision as how to treat prostate cancer, chemo or surgery, and it took me quite a few weeks to make the decision and I was helped enormously by the key medic that make the medical decisions and that it is advice from knowledgeable doctors of which I had two of my own and friends back in New York who were doctors and who knew specialists and they spoke to the specialists what they recommended.”
“All of a sudden, I couldn’t do anything and I had a [unintelligible] and the decision was they left it up to me at age 87 two years ago, about should I have bypass surgery or not [unintelligible], believe me I spent sleepless nights about it [unintelligible]. I finally made the decision to do it and it worked out.”
“I made it with my wife and I made our own decision and in fact, I have a pink piece of paper from VA that says what to do with it when the 91 people come to my house. Dr. --- gave me that, filled it out and my wife and I made this decision.”
“…it was a decision only I could make and I finally decided that the main thing I would consider was my life, not the side effects.”
“I was diagnosed with a tumor in my prostate in 1998. A urologist, my physicians [unintelligible], everybody says you got to have surgery and I just kept on postponing it. I said, “So many alternatives.” I know [unintelligible] I went to four others. I went to Washington; it was up in Seattle where they specialize in SEEDS (CEEDS)? [unintelligible]…I spent days and weeks. I spent a fortune, a lot of money, traveling. Anyhow, I decided to wait and I’m still waiting and I’m eleven years older.”
“Actually, I had no problem in making that decision. Just informed the family what was going to happen and then I said, “O.K., go ahead with the surgery,” because the important thing about making that decision for me was that I went through the pain of having back aches. I mean they became more severe as I progressed, so there wasn’t something that would say, you know, maybe or maybe not. You had to make that decision and I didn’t want to suffer with that pain the rest of my life. So that was an easy decision.”
Using a focus group for patients to describe their experiences with making difficult decisions seemed like a nice way for the subjects to share. Nobody seemed particularly reserved and no one seemed to dominate the conversation either. Based on the descriptions of the decisions that they shared, they seemed to all be older men, which possibly added to their comfort level. The subjects described a variety of decisions that they made, including decisions about prostate cancer treatment, bypass surgery, advanced directives, and back surgery.
They described a variety of decision-making processes. Most described who was involved in the decision. Some described a completely solo decision, while others described feeling ownership of the decision but gathering more information to make this decision, and one described a joint decision with his partner. Many were solitary decisions, where subjects took complete ownership over making the decision. Three of the subjects described what sounded like a lonely process, including sleepless nights. Another subject used connections with physicians to gather many recommendations, but ultimately seemed to own his decision. Another subject spent a lot of time and money gathering information about treatments to make his decision. Only one subject cited his decision as a joint decision with his partner.
For one, he had an easy time making the decision. This subject felt that the severity of the pain that he was experiencing made the decision to do surgery an simple and straightforward. The rest of the subjects seemed to show some turmoil, weighing risks and benefits, and/or consulting with others.
In another experience, his process was so protracted that his decision was more like a non-decision. When faced with deciding on prostate cancer treatment, he had recommendations from his personal doctor, traveled to specialist treatment centers to explore his options, and he his process seems to be ongoing, in that he declined treatment and is doing active surveillance. He seems to be continuing to gather information to inform his decisions. The other processes described were quite finite.