Perceptions of Care Quality

People who are living with genetic syndromes and/or hereditary cancer have many interactions with health care providers and health care facilities. Those we interviewed told us a lot about both what makes for care they perceive as high quality and what makes for care that is lacking.

 

Desiree emphasizes that health disparities mean under-represented people may not get the care they need.

Desiree emphasizes that health disparities mean under-represented people may not get the care they need.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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I, you know, also had the financial toxicities that can come from a cancer diagnosis as well. And so, so much of my life changed as a result of the second diagnosis for the better. But also, I would say that it definitely was not a cakewalk under any stretch of the imagination. And so I then became aware that there are really a lot more health disparities than people really focus on, or... And there's just so much work that needs to be done as it relates to health, as it relates to cancer, as it relates to people that are medically underserved, underrepresented, et cetera. And so I continue to try to educate myself so that I'm able to educate others about the disease, and try to be informed, and try to be empowered, and try to have a voice because, unfortunately, I have fo-, I have found that I have had to advocate for myself more than I should with the health care system. But not wanting to just sit on the sidelines and be discarded or disregarded, I've just fought to make sure that I'm getting what I need so that I could have the quality of life that I want for myself, but also to help me to be able to advocate for others, whether it be family or just encourage other people on how to advocate for themselves has really been the, one of the biggest outcomes of my journey. 

Competence

Everyone we interviewed wanted health care providers who are competent. Being competent means, as explained by those we interviewed, being knowledgeable, skilled, thorough, and ready to keep learning as new knowledge emerges. Competent providers are able to “connect the dots,” put together symptoms and family history, order suitable testing (and limit over-testing), reach correct diagnoses, and then recommend up-to-date and effective treatment. People we interviewed noted that in their experience, often such providers work at specialized clinics or centers. Irina said that the providers at such places tend to have “way more experience and way more resources.”

 

Matthew sees a specialist in Lynch syndrome.

Matthew sees a specialist in Lynch syndrome.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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And then as we came here, got connected in with a physician who happens to focus his area of expertise and research on Lynch syndrome, in particular. And he's been a fantastic gastroenterologist. So I feel really fortunate in the community that we are, and having a medical committee that we have to lean into. And then, you know, with the genetic screening, to have genetic counselors who can meet with you, and talk through all that, and complete those tests. I mean, it’s been really fantastic.

 

Joan highly appreciates her clinician for his skills, even though his style didn’t match hers.

Joan highly appreciates her clinician for his skills, even though his style didn’t match hers.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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He was just an exceptional physician, so I stayed with him during the time period that I need, that I needed to, but his style didn't necessarily match mine. But I felt that it was critical to compromise my, gee, his approach is different, and if I need his services again, I would go to him, and just say, “OK, you don't practice the way I would like, but that's all right,” because he's clinically very strong. But yeah, it’s just a balance. Sometimes they come in with new information, sometimes I do. It’s just a dialogue that we have.

 

Paul appreciates his surgeon’s ability to adapt as new information emerges.

Paul appreciates his surgeon’s ability to adapt as new information emerges.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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But that's one of the things that I liked about him, is that he had a strong recommendation that I don't do it.
Right.
But then, after I had some more tests done, and he did some more information, and he spoke to those doctors, and spoke to me, and then he said, “well, OK. This is probably something we should do.” So. And I think that it's the difference between confidence and arrogance. Arrogance is, “I have made this decision, and that that is the decision.” Confidence is, “you know, I've made this decision, but then I got new information and, you know, I have adjusted my opinion.” And that's one of the things that I liked about him was that, you know, he not so much could admit when he was wrong, but he could take new information and adjust his opinion accordingly. And I think he did a great job.

By contrast, some people we interviewed had experiences that led them to question specific knowledge and/or skills of their providers. They told stories about how actions they perceived as errors made by providers had consequences for their peace of mind and for their health. Eve sees a doctor who blames all of her health problems on her being overweight. Kerry’s doctor says she is “too young to get cancer.” Charlene was initially told she does not need chemotherapy. Ginny is never informed of some side effects that are common with the medication she is given. Irina is discharged too soon after surgery and ends up in the ER the next day. Mea is given a medication that is contraindicated for one her conditions. “I wish they would look at the whole picture and not half the picture,” Mea says. “You’ve got to focus on all of me…maybe check the whole history.”

 

Mary believes she got the wrong treatment because she was misdiagnosed.

Mary believes she got the wrong treatment because she was misdiagnosed.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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So I've always been angry, I would say, at him, because if he would have, I think, tested me before the hysterectomy, I would not have had the vaginal hysterectomy, where he took it out in pieces. So because of that, there was more concern that [um] the cancer could have spread. So even though it was an early stage, I had to go through radiation treatments then. And I had three internal radiation treatments at [LOCATION]. And then I had the 25, I think, external radiation treatments actually in [LOCATION]. So I was very anxious and depressed at that time. And so was my mother and my other siblings. And our daughters at that time were just second grade and sixth grade. So I didn't share a lot of it with them, of course. And then home I became so anxious I was-- I lost like 10 pounds in six weeks. And we kept thinking it was due to the radiation. But then they figured out it was anxiety. And my way of reacting to anxiety was to vomit and not eat.

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Another thing that was bothersome during that time was that the doctor, my one in [LOCATION], was going to do the internal treatments. And my doctor in [LOCATION], who had done the surgery, oh, argued, it seemed like, over my treatments. And I would actually receive a call from the doctor saying they had never talked to another doctor so arrogant, and whether or not I would you know, need all of the treatment that I was getting. When I look back, no wonder I was anxious and depressed. But, again, I got through it, and felt fortunate because there are many others who don't.

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My husband and I both felt like you know, my doctor missed my diagnosis. I wish now I had been more-- had put more pressure on as my own advocate, or had gotten a second opinion. But my doctor at that time, my gynecologist, was head of the department, and was very well thought of in the community and the area. So I just relied more on what he was telling me, instead of maybe being a little more my own advocate. And that's one thing I learned since then, is doctors are human too. And they make mistakes. And we all, in health care, need to be our own advocates. I really felt at that time my body-- and since then, not that I had symptoms for colon cancer. But just we often can tell, our bodies are letting us know at times if something’s not quite right.

Coordination

Because of the complex nature of their conditions, many of the people we interviewed were being followed by multiple clinicians at the same time. Christian saw a “Crohn’s doctor…every few weeks” who “is working on just like inflammation kind of stuff,” a second doctor, less frequently, who did his colonoscopies, and a primary care physician who “is aware of…what is going on and everything” and can facilitate him having routine tests locally.  Some people report that all of their providers work well together.  Others we interviewed said that sometimes their care is not well coordinated. When that happened, they reported frustrating delays and gaps in care. Sometimes, they found they had to do the coordination work themselves.

 

Denise discusses her experience with poor care coordination.

Denise discusses her experience with poor care coordination.

Age at interview: 51
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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Don't assume nothing. They assume that somebody already had a conversation about prosthetics. No. No one. I mean, they-- generic information. I had to go digging and figuring out stuff myself. You know, don't assume that. It's sad. And I told the people at the Cancer Center. I said, “God help anyone who walks in here with breast cancer.”
And this was not the kind of main artery. Was this at a small clinic? A small…
This was the bigger clinic where they specialize. And they had a navigator nurse, and they said, “well, we didn't tell you about that because she wasn't here that day.” I said, “what a bad excuse.” I said, “have you guys ever heard of business cards?” I said, “because you could've given me her business card.” I was upset. There’s no excuse for that. There's none. And if you're taking in that much money, I'm entitled to the best of the best. You know, and I’m not, I mean, that’s a lot of money you got to throw at that, at the health care system. There's got to be a better way, truly.

 

Briana is pleased with how her surgeons worked together.

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Briana is pleased with how her surgeons worked together.

Age at interview: 28
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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The center where I went was comprised of-- I don't know, maybe five plastic surgeons, each kind of with their own style, and only one oncologist, which actually, I was very hesitant about choosing that center to go to, because I didn't have an option. So I did-- I researched him. And I had a phone consult with him before the surgery, just to pick his brain. And I talked with patients who had gone to him before, and you know, like researched his work background very thoroughly to make sure that he wasn't just a friend of one of the plastic surgeons who came to work there because he wanted to live in [location], or something, you know. I didn't like that there weren't many options, that there weren't any options besides him. But after researching him, and talking with other people, I felt confident that he would do a very good job. Because I mean, you can talk all about the plastic surgery, and how your body looks, and the flap reconstructions, and how great your surgeon is. But when it gets down to it, it's about the mastectomy, and getting as much breast tissue as you can out to reduce your risk. So after assuring myself that, you know, I was comfortable with that decision, then yeah, I went there. So there was an oncologist. And then my main plastic surgeon, and then a second plastic surgeon scrubbed in, and helped with the, the flap reconstruction. So the whole surgery-- when I went to local doctors, they said it will be a 12- to 13-hour surgery. And when I went to this place, it was 6 and 1/2. It was really incredible.
So they knew how to work on skinny women.
Yeah, skinny women, and they knew how-- I mean, the surgeons had been working together. I think the oncologist had been there for about a year at that point. And then the plastic surgeons had been working together longer. They presented themselves as a very cohesive unit. And I think the surgery length and the results prove that.

Communication

People we interviewed emphasized the importance of having good communication with their health care providers. Good communication means getting good information delivered in a way that is customized to individuals’ specific needs and helps them to make the best decisions about their care. For Victoria, who speaks Spanish, communicating with her doctors meant sometimes asking them to repeat information.

Irina and Janet S. have very different experiences with their genetic counselors.

 

Irina discusses coming to her first counseling session with a lot of knowledge.

Irina discusses coming to her first counseling session with a lot of knowledge.

Age at interview: 45
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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I don't want to be negative, because I do realize the kind of the unusual situation that I present. And my understanding is that the genetic counselor that I met originally was like fresh out of college maybe...I had like a bunch of papers printed out from PubMed...I had like questions and all that stuff, and she started with explaining to me what chromosomes are...And I’m sure that’s what you do for regular patients, so I totally understand where she was coming from. But then I told her, “Let’s not waste time on this, let’s move on to something that I want to talk about.” And she just couldn’t.

 

Janet S. says her counselor pitched her explanations at the right level for her.

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Janet S. says her counselor pitched her explanations at the right level for her.

Age at interview: 55
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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It’s a very convoluted, twisty conversation…she used a lot of visual aids. She had some graphics I could look at…she kept things at an understandable level…when she would say something in a medical jargon, she would immediately come around and put it into layman’s terms.

One very important kind of communication is delivering bad news, such as when cancer is diagnosed. We heard stories about providers who did a bad job breaking bad news and those who managed it well.

 

Lisa S. discusses receiving her diagnosis over the phone.

Lisa S. discusses receiving her diagnosis over the phone.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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And so because it wasn't through my doctor, the breast navigator called me afterwards. And she didn’t say to me, “Is this a good time?” Or, ‘Why don't you come in so we can chat.” She just says, “I have some news for you.” And I'm like, ‘Oh, I get that. OK.” I was like, literally, right outside her door because she worked in the next building over from where I did, though she wasn't there that day. And she says, “Well, I have some news for you.” She says, you know, “It looks like, it's DCIS. I'm like, “What's DCIS?” But I was sitting there during lunch hour. I wasn't expecting the news. It wasn't during an office visit. They didn't say come in for a visit, where I could have been relaxed, you know or. It was on the phone during lunch hour.
I think it makes no sense.
Which makes no sense. Yeah, I don't understand why she couldn't have said, “Hey, do you have time for an office visit, or a phone visit, or an office visit? Why don't you come in?” You know, so she gave me the news right there. And the funny thing was she says, “It's DCIS. And I said, “Well, what's DCIS?” She says, “It's ductal cell in situ.” I said, “In situ,” I remember my Latin. I said, “That means in place,” because it's also an architecture term. I said “It's in place.” I said, “It means it hasn't spread, right?” She says, “No, not at this point. It hasn't spread.” She says, “But normally, what they do is when they do the surgery, and they go in there, 50% of the times it has.” I wanted to say to her, “Can you not tell me that? Why tell me about a possibility that hasn't occurred.” That surprised me too. And she says, “You have BRCA.” She says, “They will probably recommend a mastectomy.” I said, “Can we not talk about that?” I said, “You're just giving me the news. You don't have to tell me that yet.” I said, “No, no, no, I'm not going to consider that.” I said, “I'm not going to consider that.” I said, “I don't know what you're talking about. I don't know what you're talking about. I got to go.” Yeah.
That's an odd way to do a sensitive service.
Yeah. When I look back on it, I think the reason why they did it is because I suppose they didn't want me to wait to make an appointment. Like, oh, well, I'm available next Wednesday. You know, they wanted to tell me the information because then, after that, she says, “I'd like to schedule you an appointment to see the surgeon.” I'm like, “A surgeon?” I'm thinking, well, you know, to a-- what's that phrase? To a nail, a hammer-- or to a hammer is a--
Oh, right, yeah. If you-- right, yeah.
Right. I'm like, I said, “A surgeon?” I said, “Can't I see, you know, an oncologist? I mean like, is a surgeon the thing?” She says, “Well, I think they might want to do surgery.” I said, “Well, you might think so. But, you know, a surgeon's going to want to do surgery.” I said, “That limits my options.” So I felt moved into that position. But I also knew I had BRCA. And I also knew that-- I knew the statistics at that point. I don't know how I knew that. But I already knew that it was higher. But I don't remember when I found out that I was BRCA, I don't remember getting a whole lot of information about it either.

 

Becky says she received her diagnosis in a way she appreciates.

Becky says she received her diagnosis in a way she appreciates.

Age at interview: 39
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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So I went in. I met with my primary doctor, my OB-GYN. And she played it cool, but she said, “I want you into the breast center.” It was a Friday afternoon, of course, when I had my appointment. So they said, “We can get you in Monday.” So I went in Monday, and really, I remember just not even really thinking about it over the weekend. I didn't have anyone go with me to the appointment. I just wasn't worried. And so, I got in there, and it was the same nurse practitioner who had said, “have your babies.” And she did the physical examination, and she sent me in for the mammogram. And I could tell from the physical examination that things weren't going well. So she sent me in for the mammogram, and I was really appreciative of her. She came in before my mammogram even started, and she just-- she put her hands on my shoulders and she looked right at me and she said, “I got to tell you, this isn't going to be good.” And she said, “I just wanted to be a straight shooter with you, and this isn't going to be good.” And I just, I really appreciated that. I hadn't appreciated her straightforwardness before, with the have babies, do this, you know, do that. But in that moment, I really appreciated that.

 

Heather calls the way she learned she has Lynch syndrome “scarring.”

Heather calls the way she learned she has Lynch syndrome “scarring.”

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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Delivering news about somebody's health that is going to affect them from here on out-- it changes what they know to be true about themselves and their identity and their future has now been altered...I really wish that that news had been delivered and there had been some kind of, I don't know, a care coordinator, or just counselor, like therapist counselor, to then be there to say, “How are you feeling? What do you want to talk about?” Because I was reeling about what that meant for me and my life, and I was not thinking about, “OK, logistically, what are the next steps I need to take?”

Compassion

People we interviewed told us bedside manner is important to care quality. Steve K. described “very good bedside manner” as being “very open with the patients…very compassionate.”

According to the people we interviewed, one important element of compassion is time.
Compassionate care is care provided without rushing and on the patient’s timeline. Ronnie was annoyed when a provider did not show up as scheduled. Peggy “lost it” on the phone when a doctor’s office wanted to keep her waiting over the weekend for test results. For Kerry, “time is of the essence” for one receiving a cancer diagnosis. She appreciated that her team was able to move very quickly. Similarly, Desiree appreciated being able to be seen by her medical team without an appointment when something came up unexpectedly.

 

Steven says his doctors time his treatment according to his wishes.

Steven says his doctors time his treatment according to his wishes.

Age at interview: 67
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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And then it’s-- tomorrow will be one year to the day that I got my diagnosis when they called and said, “you need to come in.” The results weren't what obviously everyone hoped for. And so they said that the tumor in my breast was cancerous, and that the lymph node that they had biopsied also had stray cancer cells in it. So it had already started to spread a little bit. And at that point, I had just retired. I retired September 29. And I chose that day because it was the day before duck hunting opened, and I love to duck hunt. So duck hunting wrapped up the first week of December, and then all of this started taking place. And we'd already rented Airbnb’s to go down and visit my son, my granddaughters, and the family that lives down in [LOCATION]. So when I met with my doctor, [NAME], it was amazing how they bent over backwards to accommodate me as much as they could. I mean, she, we were there on a Friday afternoon when she was giving me the diagnosis and all of this. And at 5 o'clock in the afternoon, she had her scheduling nurse come in to get my, all the tests done that they wanted done the next Monday morning because I was supposed to have left on Saturday to go, we were driving down to [LOCATION].
And so they got everything scheduled. And then we left for [LOCATION] that afternoon. And I was only able to stay for two weeks because my chemo started on January 5th.
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I mean, and there were certain things that, you know, 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 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.
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So 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.”

 

Charlene describes feeling good that her doctor takes time to call her.

Charlene describes feeling good that her doctor takes time to call her.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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There's wonderful doctors you know out there. [LOCATION] rocks. I mean, they care. And the concern is amazing. You know, when your doctor calls you personally and talks to you, and it's not like, “Oh, I've got 10 minutes,” you know? No, they can sit there talk to you for 45 minutes, and you can hear the care, the concern in their voice. That means the world to you.

A second important element of compassion is demonstrating that one values the patient by paying attention to the person, not just ‘the patient’. Steven, who often sees his doctor outside of the office because they attended the same church, knows the doctor cares for him as a person. “He said, ‘I’m watching all the updates to your chart constantly. I know everything that’s going on with you, with your cancer treatment,’ and ‘If you ever need me for anything, you call me.’”

 

Maria H. calls a nurse her guardian angel.

Maria H. calls a nurse her guardian angel.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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Because my medical team, I couldn’t have asked for a better one, like you, that I without you I think that I wouldn’t have felt at all comfortable. For me, you were my guardian angel all the time. You made a big difference and you continue to do so in my life. Because when-- I remember on one occasion that I had had diarrhea and I was feeling very bad. And with one little call that I made to you, you told me, I will give you an IV and come in. I mean, an attention that it was as if-- oh, no, part of your family. So, I, this is another-- which is why I say God has never left me alone. When I know that you are there, I said with her yes, I will. So the fact that you would talk to me and would ask me how are you and that all of the time you examined me. So, for me, that was the total difference of my treatment. You did it.

 

Porque cuando - recuerdo en una ocasión que yo habia- tenía diarrea y me sentía muy mal. Y con una sola llamadita que le hago, me dice, le voy a poner suero y venga. O sea, una atención que como si fuera-- ay, no, parta de la familia suya. Entonces, [uh] yo, ese es otro-- por eso digo, a mi Dios nunca me ha dejado sola. Cuando sé que usted está ahí, yo dije con ella yo sí. Entonces, [uh] el hecho de que usted me hablaba me preguntaba y cómo está y que todo el tiempo usted me revisaba. Entonces, para mí, esa fue la diferencia total de mi tratamiento. Usted la hizo.

The people we interviewed emphasized the importance of competence and compassion in building trust between patient and provider.

 

Becky says she trusts her doctors.

Becky says she trusts her doctors.

Age at interview: 39
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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My medical care at the [LOCATION] was astounding. I just came across some of the most amazing people with big hearts and so smart. And I just, I trusted everyone the whole time. You know, some people really want to Google everything and feel like they're making their own decisions. And I learned very quickly in the IVF process for my daughter that Googling things was not good for me. Too much misinformation, too much emotion, too much worry tied with it. So I really put my trust in my doctors and never felt like they steered me wrong or felt like they were, they understood my personality and what I needed to be doing for me, too. Everyone in the chemo treatments were amazing. I did deal with some depression when it was all done. I was able to work with a counselor right there in the [CLINIC], which was so reassuring that they were right there in the [CLINIC]. That it wasn't like I had to-- that it wasn’t someone who didn't work with this situation day in, day out. That they really had heard my same story so many times and knew how to help me with it. I was really grateful for that resource. Yeah, everyone, I remember Doctor [NAME] told me that she was basically handing me off, that she didn't need to see me every time I came in anymore. I burst into tears just because you think, I wish I had never met any of these people. But man, they just-- it went so far beyond medical care. And I'm so appreciative of them and just feel like they're-- my dad always talks about our hall of fame wall in the [NAME] house.
That's OK. It can be bleeped out.

And we don't actually have a hall of fame wall, but it's like, so like my professor, who, you know, has just been an amazing part of my life and then has turned into such an amazing friend, he's on the hall of fame wall. But really, my medical oncologist, my surgeons, my radiation oncologist-- all of them, they're absolutely on the hall of fame wall in our houses. So, yeah.

Provider Problems May Be System Problems

Although the people we interviewed tended to focus on individual providers when telling their stories about good and bad care, a number of them pointed out ways in which they perceive providers to be constrained by problems outside of their control. As Lainey noted, in her experience hospitals and clinics are often understaffed and overcrowded, which leads to long wait times for patients. Irina attributed her poor post-surgical experience to the pressures on providers to discharge people quickly - “It’s the system that forces them to make decisions that are probably not the best.”