Table 2.

Excerpts of participants’ comments, by theme

THEMECOMMENTS
Patients need medical expertise, but they have other needs as well
  • I come from a family of family physicians, so I tell myself that if he is a physician, he has the skills to be doing what he is doing (Victor)

  • The approach with the patient—for sure it’s important. It’s maybe even a priority (Manon)

  • A feeling that I didn’t trust her—that she was too stiff. My illness, my lungs. She would say: “You have this. You have that. I’m going to give you some pills.” Give me some pills? It was sort of like I was going to be my own guinea pig. Do it yourself, because I’m not coming back here (Ray)

  • Empathy is very important. And the desire to help. That can do miracles. The way you approach people. Coming to your patient when you are stressed and tired … or greeting your patient with a beautiful smile (Chayo)

Patients need respect and validation of their experiences
  • The main thing is to go slow. The patient is already suffering enough. He’s suffering—sometimes more than you would think (Ray)

  • The physician sat down and then she said to me: “I don’t have good news. Are you ready to listen to me?” (Chayo)

  • She gave me the information, but the information was catastrophic. It wasn’t like, “It could be this. It could be that, which is the worst-case scenario. Otherwise, it could be like this, or this, or this.” I didn’t get the scale. I got the catastrophe. I had no control over the situation. She was in the driver’s seat (Diane)

  • “We could always do an infiltration.”

    “It hurts so much, just the idea of having a needle inserted. Forget it. Not right now. Maybe later, but not right now.”

    “Okay.”

    That’s how I knew she was listening: If that’s how you are feeling, no problem (Diane)

  • But I wasn’t alone. I had my partner with me. I didn’t necessarily need to talk. Sometimes, there’s nothing to say (Homer)

Patients need their physicians to listen without judging
  • She listened. She closed her eyes to not be influenced by the stoic side—you know, this is how it’s going to be. And she listened. She said, okay. She took in what I said. She didn’t interpret it (Diane)

  • I don’t know how the courses are taught .... Yeah, so maybe it’s the prejudices we have in our society—judging people by how they look—which is part of belonging to a society. But maybe it can be done differently (Diane)

  • “No, I’m listening to you. I can repeat what you said to me, word for word.” [the doctor] I said to him, “You’re not listening to me. You’re looking at me, but with your eyes. You’re not listening to me” (Manon)

  • When you are speaking to someone who is avoiding eye contact, it’s not—for me, personally—that’s not a good sign (Manon)

  • She asked me questions. She really asked questions. Then she asked me to describe. She really listened to me—to what I was saying. It was, like, “That doesn’t matter, maybe it’s a little ….” “So it’s wacky, whatever!” [Laughter.] It was, like, “Go for it!” [Laughter] So that created some trust between us (Manon)

Patients need reassurance
  • You’re all alone in his office. He tells you that you have cancer. And I’m thinking, maybe it would be better to wait until I bring someone with me (Gino)

  • I was happy that she called when my partner was there. For me, that’s important. Probably because I have one more person fighting for me—because it’s a fight every day (Victor)

  • I can’t talk the way I’m talking with you. It’s rare. Even with my doctors. It’s either my wife or my daughter who does the talking (Ray)

  • He’s the one who told me about Dr R. He encouraged me. He told me there were treatments. That they caught it early. That it wasn’t too late (Gino)

  • I appreciate that. That if it didn’t work, there were other things they could do. That I wasn’t being sentenced to being in pain for all eternity (Diane)

  • The one who gave me the information—I really thought he was smart. He talked to me for an hour and a half. We were both surprised that he gave me that [expletive] information (Joe)

Overall, cancer patients are satisfied with the health care system despite the gaps
  • The health care system—they’re doing their best. They’re doing what they can. They can’t do more without more tools (Ray)

  • I would never criticize the health care system. First of all, I added up the cost and I said to him, just the cost of that drug, that treatment, plus the cost of Xgeva [denosumab], plus the hormone therapy and my implant, which I still have, that’s $50 000 a year. Who am I to complain? I’m fortunate. I’m one of the lucky ones (Victor)

  • So on weekends? On Friday from 12 o’clock on? Forget about it. Don’t have a problem between Friday noon and Monday morning. Forget about it. Go to emergency. And when you go to emergency, you’re dealing with people who don’t know you—who haven’t read your medical record. Reading an entire medical record takes time. Emergency departments are overflowing. It’s like there’s something missing (Diane)

  • She left the office. We were in her office and she was trying to reach the radiologist for my results. They didn’t have time. She went right to their office. She came back. Really efficient. I couldn’t believe it (Diane)

Vital importance of the oncology nurse navigator
  • Right now, I find Julie [the nurse] more reassuring than [the doctor] … because I have more communication with Julie than with Dr R. (Gino)

  • My nurse navigator. And Dr D. She’s amazing. They communicate so well with each other. That helps too (Homer)

  • Eventually, I decided on Friday to call [the nurse]. What an amazing team. On her voicemail, Julie said that they would respond to messages left after 3 pm the next day. I called at 3:15 pm. We were in the car, doing our grocery shopping, and she called back (Victor)