Health Care Professionals

In every interview we asked people if they had any messages they’d like to convey to others. In this summary we explore what people with hereditary cancers and genetic syndromes would want to say to clinicians and others who work in health care settings. In other summaries, we describe messages to those with inherited cancer risk, and family and friends.

Give Me the Information I Need

Many of the people we interviewed wanted health care providers to provide specific information that they can use to both understand the complexities of their conditions and to make decisions about their treatment and their lives. What people most want to know may change as they continue to live with their conditions, but most of the people we spoke to described a continuing need for clear information.

 

Christian wants to know what to expect.

Christian wants to know what to expect.

Age at interview: 25
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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And to go over, because they go over and they give you the paperwork of, you know, these are the increased risks for this, this is the percentage of this for that. But maybe to say, you know, in the next year, this is what we're going to do. In the next two years, you should consider seeing this specialist. Just because otherwise, I'm just, you know, floating around, waiting to be told, you know, what to do. But I think that would be important, is, you know, a little more frequency and contact. And I can contact, you know, the doctor at any point in time, but, you know, to have that setup initially of, “OK, this is our initial consult, this is the basics of Lynch. Let's meet again in a couple weeks. What questions do you have?” I think that would be important. The face-to-face interaction, I think, would be really important to have.

 

JanLynn wants providers to communicate the purpose of the patient’s visit.

JanLynn wants providers to communicate the purpose of the patient’s visit.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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When I walked into my doctor's office there was no explanation of why you're here and what the purpose of asking you all of these questions. Why it is that you need to see a genetic counselor because I think they assume that you know. And simply to ask, “do you know why you're here? Do you know what this means? Do you know what we're going to be”-- and then if they don't, then explain, take the opportunity to explain because I had no idea.

 

Kim emphasizes the importance of providing information based on listening and responding to patients’ questions.

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Kim emphasizes the importance of providing information based on listening and responding to patients’ questions.

Age at interview: 55
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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But answer people's questions if they have-- take a minute to answer your patients' questions if they have questions. I went with paper after paper. And I understand probably now with the web and everything people might think they know more than they know. I can't imagine how frustrating it must be. But answer their questions. They're only trying to find out because they don't know what to do. They're looking for help.

As Mea explained, people with hereditary cancer need “more information, more help, more evidence”—and, crucially, they want to know how general information applies to their own cases.  Amy wants a better understanding of her own risk, as well the specific costs and benefits of frequent screening in her own case. Paul wants to know “what, realistically…what areas should I focus more on being worried about.” Briana and Lisa S. want to learn more about new treatments, such as gene therapy, and the likelihood they will benefit from these treatments. Ginny wants to be told more about what she can expect in the way of side effects from the drugs she is taking. Others, like Lori and Kim, want their providers to communicate with them about research and the prospect of finding a cure for their genetic conditions.

 

Cynthia recognizes the limits of the questions even experts can answer.

Cynthia recognizes the limits of the questions even experts can answer.

Age at interview: 50
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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The biggest thing for me is and, you know, I don't even know if there's answers, but the biggest thing for me is knowing if I've really beat it or not, is knowing was it really all worth it? You know? Because if I end up with, you know, cancer under this implant in three years, boy, am I going to be pissed. Not going to lie, you know? But I don't think anybody knows that answer. So, I think that the real questions that we harbor deep in ourselves nobody can answer, no matter what their expertise level are.
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Where the uncertainty and the, the discomfort lies is not with, you know, let's follow this medical regimen. It lies with the unknown that nobody has an answer for. So there is no expert that I need to see for any questions, because they won't be able to answer my questions.

Give Me Information in the Way I Need It

The people we interviewed had a lot of advice for doctors and other health professionals about how to provide information to their patients.

 

Precious advises providers to “let the patient take the pace.”

Precious advises providers to “let the patient take the pace.”

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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When I go to the dentist, I don't want them to tell me every detail of what they're getting ready to do to me. But that's me. Some people want every little detail about that. So you just have to learn your patients and let them guide you into what they want to know or don't want to know about their medical condition.

Some of the people we interviewed wanted their providers to, as JanLynn says, “be direct and don’t sugarcoat it.” Sue says, “give me all of it.” Denise tells providers, “don’t treat me like a two year old.” Others, like Carrie, say that providers should “give people a chance to breathe and to feel like…they can have a minute to think about it.” Indeed, many people told us that providers need to “slow down” when talking to patients.

 

Lori explains what it’s like to feel rushed.

Lori explains what it’s like to feel rushed.

Age at interview: 56
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Family history of cancer
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Just take time with your patients and make sure that they have the information they need, and that they are comfortable with everything before they walk out the door. There's nothing worse than walking out the door and saying, “why didn't she tell me anything about whatever?” You know, just take the time. It seems like everybody's always in such a big hurry. You go in there-- for example, my son just had a couple of appointments. And he went in there and in and out within like 10, 15 minutes. And he never felt like he really got the attention that he deserved. And something like this, if you're dealing with a possible cancer situation, take the time to make the patient feel like you're really listening to him.

 

Becky has a suggestion for how to elicit questions from patients.

Becky has a suggestion for how to elicit questions from patients.

Age at interview: 39
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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Ask multiple times, “is there anything else?” And ask, ask those prompt questions that aren't yes or no, and, because it's going to take people time to feel comfortable sharing the really awful side effects in a lot of cases that come with this. They're not parts of your body you feel comfortable talking about.

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I think someone just coming right into this is going to have a much harder time really feeling open to discussing all the weird little things that are going on with their body. And if a doctor isn't showing that they're taking the time to have conversations as long as they need to actually be, if they're not asking really pointed questions about specific things, they might not get the information they need to make a thorough treatment plan. So that would be my advice.

 

Irina wants health providers to make sure patients understand what they’ve been told before moving on.

Irina wants health providers to make sure patients understand what they’ve been told before moving on.

Age at interview: 45
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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I do think that health professionals need to explain things better. I can't complain about that, because I am way better prepared than your average person. But I do feel very, like when I go to like an oncologist and they like, “Well, blah, blah, blah, right?” And I feel like when I say right, I actually know what they're talking about. But most people will say right just to move on, and that does not mean they understand.
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The doctors will say something, and they like, “Oh do you understand?” and the response is “yes.” And I do think that the question should be, “What did you understand? Repeat back to me what do you understood,” like a first grader. Because saying yes is very easy out, because you don't want to talk about it. And maybe it shouldn't be that straightforward as repeat back to me, but in a different way, but just to make sure that the person actually understands what the consequences are, and what the, what the deal is.

Briana and Cynthia note that providing information in writing, using things like checklists and pamphlets, in addition to conveying information verbally may increase patients’ understanding and recall.

Like Barry, many of the people we spoke to “want to know the truth,” but several people explained that there are better and worse ways for providers to be truthful. Lisa S. understands that providers “don’t want to get people nervous,” but suggests that being too reticent means that patients then “don’t necessarily understand” the meaning of information they’ve been given. Ronnie, however, warns providers “to be careful about the language they use,” noting that the terms that are technically correct may be frightening to patients. Kerry urges providers not to be overly reassuring when a diagnosis or prognosis is still uncertain.

 

To Peggy, listening is the most important thing.

To Peggy, listening is the most important thing.

Age at interview: 36
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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Listen to what they have to say. Listen to the questions that they have. I mean, the doctor only wanted to write me a prescription for lorazepam, and I'm like, no, I don't need that. Like, space that they just listen. And ask them how they feel about it. Ask them if they have any questions. Ask them what they want to do. You know, just listen, I think is the big deal.

Let’s Be Human Beings Together

The people we talked to want to be treated with respect, empathy, and compassion. To Gina, respect means doing things like maintaining patients’ privacy by keeping the exam room door closed. To Heather, providers can show empathy by understanding and “validating” patients’ fears. To Joan, compassion is demonstrated by actions like not keeping patients waiting when they are expecting test results. Sarah emphasized the importance of letting patients “have control” in as many ways as possible, and then “mak[ing] sure they know they have it.

 

Steve K. talks about how important it is for information to be presented compassionately.

Steve K. talks about how important it is for information to be presented compassionately.

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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I think that they need to be very open with the patients. They need to be very compassionate. And I think that, you know, when they're talking to the patients, they need to tell them what the options are and what the risks are, before they, the patient, can make an informed decision. And I think the doctors I have are, you know, are like that.

Many people spoke of the importance of providers seeing the person, not just the patient. PSM urges doctors to “read the chart” before meeting a patient so they can be familiar with the details of the person’s medical story. Paul reminds providers to look at the “psychological and emotional” aspects of their patients’ lives, not just what is going on with them physically. Mea says, “focus on all of me.”

 

Thomas explains how doctors can get to know their patients.

Thomas explains how doctors can get to know their patients.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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Don't start off by saying, “Oh, what are you in for?” Try saying, “Hi. What's your name? I don't want to know about your illness. I've got your chart. Tell me about yourself. How did you feel today?” If we could do that, that would make us more comfortable. Like man, this doctor really wants to know how I'm feeling and don't want to just know about my ailments. That's my message to doctors.

 

Bobbie wants clinicians to know how much it matters when they are kind.

Bobbie wants clinicians to know how much it matters when they are kind.

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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And when you get somebody that just treats you gentle, and nice, and kind, it makes a
difference. It's just being kind to someone that makes a difference. And when you-- I can’t. Kindness-- just being kind to somebody makes a difference.

 

Lisa S. explains why it is important to see the person in the patient.

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Lisa S. explains why it is important to see the person in the patient.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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It’s-- there has to be a meeting of the minds where it’s you and the patient are a real team. You have to know the background of that person.

In addition to being seen and known as full human beings themselves, the people we spoke to also wanted to see and know the human side of their providers.

 

Maria H. explains why it important to see the person in the provider.

Maria H. explains why it important to see the person in the provider.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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And to the medical personnel, I believe that in general everyone attends courteously, warmly, and kindly. Only sometimes there was a little more that maybe break the mold-- I mean, it is like a very professional but maybe they could breakout a little more as a human being. Because the human touch makes a big difference and you can be very professional and very cold. And well, you can be very professional and very warm and they treat you like a person not as a sick breast. And that makes a very big difference because suddenly you say, my breast is sick, but my heart feels. And it is a difference that, that you can say, ok, this is a human being with me. And I always say, put on the face of that person that you are attending because I am also a healthcare provider and, in a way, I have already been in the medical field. And to every patient I would give them the face of a mother, the face of a father, the face of a sister. And I would say, I would treat you, I would leave you, I would care for you in the same way.

 

Y al personal médico, yo creo que en general todos atienden cortésmente, cariñosamente y amablemente. Solo a veces eso un poquito más de tal vez romper el esquema-- o sea, es como un muy profesional, pero tal vez se pueda romper el esquema de ser un poquito más como humano. Porque el toque humano hace una diferencia muy grande y se puede ser muy profesional pero frío. Y bueno, puedes ser muy profesional y muy cálido y te tratan como una persona, no como un seno enfermo. Y eso hace una diferencia muy grande porque, de pronto, dices, mi seno está enfermo, pero mi corazón siente. Y es una diferencia que, que puedes decir, bueno, es un ser humano con el que estoy. Y yo siempre digo, ponle rostro a esa persona que estás atendiendo porque yo también soy proveedor de salud en un sentido de que también estuve en el área médica. Y a cada paciente yo le ponía la cara de mamá, la cara el papá, la cara de una hermana. Y yo decía, la trataría, la dejaría la atendería igual.  

 

Carrie has a suggestion for how providers can be people with their patients.

Carrie has a suggestion for how providers can be people with their patients.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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And that maybe, taking a moment to just, you know, even just share something personal about yourself, so that you seem like a human, too. So that you seem like a person, and not just a one-dimensional kind of, ‘alright, I am your doctor’. I don't know. I just think that human connection, because you're dealing with somebody at their most vulnerable.

Other Messages

Several people had very specific messages for providers who encounter patients with hereditary cancers and genetic syndromes. Eve reminds providers that sometimes it is important to “chase the zebras,” that is, to look beyond the obvious when making diagnoses. Heather calls for “more proactivity” from providers when investigating symptoms. Matthew emphasizes the importance of collaboration between specialists when everyone is learning together about which treatments works and which don’t. Asante urges providers to “listen to black women”; “don’t shrug us off and say it’s nothing because that is how many of us are dying.”

 

Victoria wants the health professionals who took care of her to know why she is grateful.

Victoria wants the health professionals who took care of her to know why she is grateful.

Age at interview: 43
Cancer-Related Experience: Breast Cancer
Type of Inherited Risk: BRCA1 Gene
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Thank you. Because they are there, they support us a lot. At least I felt that when in the chemotherapies, there was a lot of support from the nurses. In every moment I felt, like they were angels, because they never said a word that didn’t treat me with friendliness. And thank you because they always treated me well. Always, always were in every moment, if I felt fine, if I didn’t feel well, if-- in every moment. Thank you, thank you. Same with the doctors, my oncologist, to the surgeon, well thank you very much because they were part of my life, of my-- one could say yes of my, my fight. And I came out ahead together with all of the oncology personnel - staff, surgeon, from radiation, from the nurses, from the chemotherapies. And up to today with my check-ups of every-- I started with check-ups every three months, and right now I go every six months. So, well I always see that in that clinic, in this hospital, for me it was very good, very good and very happy, satisfied, and I feel at home. Yes.

 

Gracias. Porque ellos están ahí, ellos nos, nos apoyan mucho. Al menos yo eso sentí cuando en las quimioterapias, fue mucho apoyo de las enfermeras. En todo momento sentí como ángeles, porque nunca me dijeron una palabra que no siempre me trataron con amabilidad. Y gracias porque siempre me trataron bien. Siempre, siempre estaban en todo momento, si me sentía bien, si no me sentía bien, si-- en todo momento. Gracias, gracias. Igual así a los doctores, mi oncóloga, a la cirujana, pues muchas gracias porque ellos fueron parte de mi vida, de mí-- podría decirse, sí, de mi, mi lucha. Y salí adelante junto con todo el personal de oncóloga, cirujana, de la radiación, de las enfermeras, de las quimioterapias. Y hasta en hoy con mis chequeos de cada-- empecé con el chequeo cada tres meses y ahorita estoy cada seis meses. Entonces, pues yo siempre veo que, en esta clínica, en este hospital, yo, para mí fue todo muy bueno, muy bueno y muy contenta, satisfecha, y me siento como en casa. Sí.

People we interviewed also spoke about their experiences getting health care.