Relationships with Clinicians
The people we spoke with described both positive and negative aspects of their clinical care. Things they said mattered to them included how they and their clinicians communicated; the ability of clinicians to see them as people, rather than simply as patients; being treated with kindness; and having the chance to be part of decisions about care.
Wanting Clinicians Who Communicate Well
Many people we interviewed wanted their clinicians to be skilled communicators. This means being able to present difficult news and complicated information clearly, compassionately, and in a personalized way. Becky appreciated the “straightforwardness” of the nurse practitioner who told her a mammogram was likely to find cancer. June described the importance to her care of finding a doctor who listened.
Debbie says her team did not rush and created opportunities for questions.
Debbie says her team did not rush and created opportunities for questions.
One of the things that I've experienced is that all of my team has not ever made me feel like I have to be in a hurry. They've allowed me to take my time, you know, think of questions. If I don't think of them at the time, you know give us a call if you think of it later. And so just remain available, write stuff down, give as much information as you can. If there's things that the patient needs to research, give them that information and where to look.
Nikki is amazed that her various clinician teams communicated well with her and with each other.
Nikki is amazed that her various clinician teams communicated well with her and with each other.
So, the amazing thing is, you have the reconstructive team, and the radiology team, and the oncology team. And they're all different, but they're all working for you. And so, they were super transparent, which I appreciate. That's what I wanted. I wanted all options, the good, the bad, and then we still were in control. We got to make those choices. And what I liked was that you know, they would come in. And she'd say, "[NAME], we sat down on what to do with you because you're a little bit different. We don't all agree. And I'm going to tell you what our plans were and why some of us liked this one, and why some of us like this one, and what we didn't agree on." And so, we would talk through all of it, and that I liked. I liked the super transparency, talking about what was the positive and negative to these two plans, and then, "What do you want to do? What are you comfortable with?" So that—that I really like. They were just really honest and open, and they took control when they needed to. But then they also knew like we ultimately had the decision on what we wanted to do.
Some people said it was challenging to communicate well with clinicians, especially when they felt their clinicians were not sensitive to emotions or spoke in ways that created fear or anger. Ronnie, for example, said she felt "stupid for not comprehending clinical information” during some conversations that were held when she was not emotionally prepared to process information. Others felt “overloaded” when clinicians, in Kerry’s words, “kind of just throw some information at you and say, ‘make a decision.’” After failed attempts to communicate, some patients came up with ways to help with these communication issues. Others, like Allison, felt communication would have gone better if she could have seen all her clinicians at once: “stick them all in a room,” she said. “Ask them all questions, help them all get the whole story. But that's not what they did”
Precious describes a “not good” communication with her surgeon.
Precious describes a “not good” communication with her surgeon.
He was a good surgeon, but his bedside manner and his way of telling me about the breast cancer was not good. And I reacted not in a nice way. He told me--I had someone with me--and he, sat me down. And he had the biopsy. And then, after that, he came and told me that you have breast cancer, and you need to have your breasts removed. And just his whole manner and how he-he presented the whole thing was not nice, and it wasn't in a compassionate way. And I reacted not in a nice way back. And so, he was like, well, don't kill the messenger. And I said, well, the message is not what, you know, what I’m reacting to. I'm reacting to how you're delivering the message. And like I said, it was not in the best of ways.
Sarah feels misled by the way her oncologist described reductions in future cancer risk.
Sarah feels misled by the way her oncologist described reductions in future cancer risk.
With the tamoxifen, it was presented as it would increase my survivability by 40%. But my recurrence rate was already8%, which is like 30% lower than it was before the mastectomy. The numbers were presented very skewed towards taking tamoxifen. It was, you know, a 40% better rate. Well, if my rate's only 8% of re-occurrence, that makes it, what five percent? So, it's really only a 3% reduction in my recurrence possibility. So, when I really looked at what I was being told, the 40% is what I heard. Oh, 40%, that's great. That's much better. And I don't know why I put it--why I really broke that down, what the oncologist said. Well, I don't know why I really broke that down into, well, let's look at what 40% means. I can't remember why I came to--except that it was reading the insert for the tamoxifen, you know? Reading the actual drug company's information--what they said combined with what the oncologist said and sort of breaking that down. And it's funny that when I spoke to the second oncologist about not taking tamoxifen, her first thing was, “Oh yeah, well, it's a 40%--but I mean, going from 8 to 5 percent.”
Linda improved communication by sharing a list of written questions with her care team.
Linda improved communication by sharing a list of written questions with her care team.
I had so many questions that I would type them up, a copy for the doctor, copy for me. But many times, when a doctor comes in the room and they see you with a whole list of questions, they would immediately just scoff. And so, what I did was, I would hand my questions to the nurse or to the doctor and I would say, "These are questions I have. Could we go through it?" Well, now I've given the doctor control of it, and he would scan it and he or the nurse would answer my questions. And I left there each day feeling that I had gotten everything I needed to know.
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My reconstructive surgeon looked at me, he said, "Can I keep this copy?" And I said, "Of course. That is your copy." So, this was a way that I, I felt like I was working and collaborating with my doctor to get answers that I needed.
Wanting Clinicians Who Are Kind
The people we interviewed also described how much it mattered to them that their providers were warm and kind. Bobbie said, “When you get somebody that just treats you gentle, and nice, and kind, it makes a difference.” Chelsea appreciated clinicians who were “sweet and understanding” and had a “warm demeanor.” Victoria appreciated her doctor addressing her fears about dying of breast cancer by saying “you are not going to die, you are going to live, because you are at the half-way point.” A number of people talked about how providers who they experienced as brusque and impatient – or worse, hostile and unpleasant – lowered the quality of their experiences with care. Alison, for example, said she felt “bullied” and “laughed at” by a clinician who recommended a specific type of biopsy that she later learned might not have been the best choice.
Zulma appreciates how attentive her providers have been.
Zulma appreciates how attentive her providers have been.
Up to this point, they have cared for me super well, very professional. And I admire them because they have so many patients and they worry about every one of them. They call me, “How are you, Señora? How do you feel? How have you reacted to the medication?”
From the hospitals, they call me, and to this day, they tell me, anything that you feel, come quickly to the emergency room or call us. I have phone numbers where I can contact the doctors; to each one of the specialists. Yes, I don’t have complaints. The truth is that I am in very good hands.
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I thank God that he put all of those doctors that I have now—are very good human beings, very good people. I know that sometimes they say that doctors shouldn’t connect too much with their patients, but that is kind of impossible. And especially when you are going through something difficult.
Hasta ahorita me han atendido súper bien, muy profesionales. Y yo me quedo admirada porque tienen tantísimos pacientes y ellos se preocupan por cada uno de ellos. A mí me llamaban, ¿cómo esta, señora? ¿Cómo se siente? ¿Cómo ha reaccionado con el medicamento?
De los hospitales me llamaban y hasta lafecha me dicen, cualquier cosa que sientas, te vienes rápido a urgencias o nos llamas. Tengo los teléfonos de donde puedo contactar a los doctores, a cada uno de los especialistas. Sí, yo no tengo queja. La verdad caí en muy buenas manos.
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Yo le doy gracias a Dios, de que puso todos los doctores que yo tengo ahorita son muy, muy buenos seres humanos, muy lindas personas. Yo sé que a veces dicen que no deben conectarse mucho el doctor con el paciente, pero eso es algo imposible. Y especialmente cuando estás pasando por algo tan difícil.
Katrina told her doctor to listen more carefully and hear what really matters to her.
Katrina told her doctor to listen more carefully and hear what really matters to her.
"Well," I said, "One thing I hope," I said, "I hope you never be in my shoes." I said that you need to start listening to your patients. And I pray you never be in my shoes. And I looked him right in his eye, and I told him, just like that
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In my, in my mind, I'm like, I would have been like, "[NAME], I should have listened to you", you know? But when a doctor's so arrogant in himself, they're not going to say sorry. They're not to say, "Well, I was," just any kind of something. You don't even have to say you're sorry. Just say, and I don't know, just any nice way of saying about the scan. Just say, “You was right about this scan.” Just say, “You was right.” Because I told him. Just say that. You're not, you're not saying, like I was wrong. You're saying, “You, [NAME], you was right.” That's what a patient want to hear that you're hearing, that okay, “You was right.” I would have been happy with that.
Wanting to be Treated as a Person
People we interviewed emphasized how important it was to their care experience that their surgeons recognize and treat them as individuals. As Debbie said of her doctors “[they] really see me as a person, and not just a patient, or a number, or a case.” Janet S. said, “I need doctors to not only be smart, but I need them to treat me as a person, and speak to me as a person.” Merle talked about how important it was to work with a doctor who “really saw all of me” as a non-binary, queer, and mixed-race person, allowing them to build trust and feel safe.
For Steven, high quality care was care that took account of his life priorities.
For Steven, high quality care was care that took account of his life priorities.
Well, and I mean there were certain things that I set as goals. And one of them was we've gone up to [LOCATION] the last, late June every year for a week. And we've rent a cabin, and we fish and swim, and, and do all that kind of stuff. And that's why I didn't want anything happening to my surgical date because I wanted to be healthy enough to go sit in a fishing boat. And I was able to do that. I wasn't as strong as I would have liked to have been, but I got quite a bit of fishing in.
Did you catch any fish?
Yeah, it wasn't really a very good week, but we caught some. I caught some pretty nice bass. I had that, and we were able to do it. So, you know, that was something I had-, I had strived to be able to do, and we were able to do it. And my surgeon bent over backwards to make sure that it could happen. Again, because when they postponed the surgery, she said, "Well, you don't have to worry about that." She said, "I will get you in the schedule. I don't care what the schedule says. I will get on the schedule, and you will have your surgery."
People also placed a high value on being able to connect with their providers on a human level. Linda describes praying with her surgeon, noting, “That was important to me.” Sharon says of her surgeon, “she gave me hugs all the time. Doctors don't always do that, but she [is] totally… a people person and just made you feel so safe and just well cared for.”
Wanting to Share in Making decisions
Some people we interviewed looked to their doctors for more than good communication; they wanted to be active participants in choices about their own treatment. Kawanna, for example, wanted to avoid losing control over decisions because “it's very hard to be, to go from being a participant, a very active participant in your life to being a spectator.” Others, like Alison, found it easier to cope with treatment outcomes “if you feel that you have the autonomy of choosing it, not being told that this is a thing you have to do.” Some people we interviewed found doctors who skillfully shared decision-making with them; others did not.
Amy’s main doctor “put everything” in her hands.
Amy’s main doctor “put everything” in her hands.
I have a wonderful physician, who really has put everything in my hands. But I mean, I agreed with her, with her vision of care. So, you know, pretty much, she'll lay it out and say, here's, here’s what you have on the table. This is, this is kind of the standard. There are these other options. And I'll ask questions. I'll ask about clinical trials. And she's pretty frank with me about, you're not really at this point for this trial, but if you want to go do this, I'll sign whatever authorization. If, you know, if I want to get second, or third, or 10th opinions, I think, she would sign all the paperwork.
Alison was frustrated when she felt her doctors limited her choices.
Alison was frustrated when she felt her doctors limited her choices.
But you know, shared decision making? There's not a lot of decision support. I mean, the oncologist literally kind of came and he's like, “OK, aromatase inhibitors.” And I'm like, “Nope, not taking them.” He's like, “Well, tamoxifen. You know, you could take that instead.” And that was it. And there wasn't any discussion of, ‘well, you know, what happens if you don't tolerate any one of those? Well, it doesn't matter if you tolerate them, because if you don't take them you will die.’ And, you know, they didn't say that, but that's the rationale. You know? ‘You must do these things or you will die.’ And most people stay in the fear place, and the fear place – that frozen fear – it drives a lot of very bad personal healthcare decisions.
Wanting Concerns to be Taken seriously
Many people said it was important to them that their clinicians take their health concerns seriously and act with appropriate speed. As Asante put it, summarizing what a number of people described about having responsive clinicians, “I found my lump myself. And I immediately went to my doctor, and they immediately took action. There was no second guessing.” A few people said they wished their concerns had been taken more seriously. Merle had a lot of back pain prior to their breast cancer diagnosis, and their primary care doctor told them “not to be so dramatic.”
Chelsea's doctor acted right away when she reported a new symptom.
Chelsea's doctor acted right away when she reported a new symptom.
And then, I guess, when I was 28 years old, I went for my annual gynecologist visit. And a couple of weeks prior, I had had some pain in my right breast. I thought since I'm going anyway, I might as well point it out to her and see what she thinks. You know, she was very receptive. She said, "I do feel something there. It's probably nothing, but we'll send you just in case."
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But she sent me for, I believe it was an ultrasound first. So, we did the ultrasound and then they did a mammogram. And, you know, they said, again, there's something there. We'll bring you back for a biopsy. So, I went back about a week later for a biopsy and the results came back malignant for something called a mucinous carcinoma, which is actually a pretty rare form of breast cancer.
John’s concerns about early signs of cancer were dismissed by his doctor.
John’s concerns about early signs of cancer were dismissed by his doctor.
I went to his office for my first meeting. And I'm not kidding you. I walked into his office. And he said to me, “Why did your doctor send you to me?” And I said, “Well, my left breast is swelled. And something's not right. It feels uncomfortable. It's just not right.” So, he had me remove my shirt and he examined me. He said, “Well, it's breast tissue. Men have breast tissue.” And I'm thinking, OK. And I said to him, “I understand that but something is not right. Something is not right.” And he said, “Well, I guess we'll have to order some tests.”