Addressing Patient Concerns in Prostate Cancer

Transcript

This transcript has been edited for clarity.

Kenneth Pienta, MD: Hi. I am Dr. Ken Pienta, and I'm joined by my nurse practitioner colleague, Diane Reyes-Dagher, for this CareCues conversation on how shared decision-making can be used more effectively with our patients with prostate cancer.

We're going to discuss several questions today, one of the main ones being, when a patient receives a diagnosis of prostate cancer, what are his greatest concerns? And how do we, as clinicians, answer his questions?

Diane spends a lot of time talking to these patients about this idea of shared decision-making. So Diane, do you want to comment here?

Diane Reyes-Dagher, MSN: Shared decision-making is a way to work with the patient. When we first consult with a new patient, we ask them, what can we do for you? Because they may be seeking a second opinion, or they may be gathering information. Or they may want to establish care with us.

Once we know what they want, we can tailor the discussion to meet their need.

Pienta: What do you feel are the essential components for a successful shared decision-making for physicians and patients?

Reyes-Dagher: I think the most essential components are respect, honesty, reliability, and consistency. Being respectful gives the patient affirmation. Being honest allows the patient to trust us. And being reliable and consistent enables the patient to know what to expect.

Pienta: One of the things that we try to really emphasize to patients is that yes, they have cancer, and it's in their body. And they are the number-one decision-maker for their body.

This is about them. It's not about us as caregivers. Our job is to inform them of what their options are. I think too often, what we see is, patients come in and believe they're at the mercy of their care team.

We think that's just so bad, and I really believe it's important that patients are empowered to make their own decisions — that they feel empowered to make decisions based on information.

Reyes-Dagher: Almost all of the patients we see will have done some research before coming to see us, and they're usually very worried about what they have read. We encourage them to let us know about their findings. Then we help them to interpret the information.

Pienta: That's exactly right, Diane. Doing online research is a form of empowerment for people. We always tell our patients and their loved ones that we can't know everything. There are thousands of trials ongoing at any one time that may be applicable to them or not. It's really important that we let them know that we're open to them looking.

But we also tell them up front that we'll let them know if they're looking in bad places or getting information that we think is just not right — that just because it's on the internet doesn't mean that it's really necessarily true.

I tell them, I'll be taking care of your prostate cancer for as long as you want me to do so. I'll develop a treatment plan with you. Diane, as the nurse practitioner, will oversee the plan we develop. She sets up the treatments and makes sure everything proceeds as we intend it.

We find that kind of conversation calms people down and helps them understand that we're with them every step of this journey. But another thing they often ask me and they ask Diane is, why did this happen? Why did I get cancer? And I find that Diane is really good at answering that question.

Reyes-Dagher: It's very common and natural for patients to try to figure out why they got prostate cancer, and why it metastasized. Some will question if it was because something was missed somewhere along the line. They'll say, maybe their doctors didn't screen them enough. Or maybe at one point, they had an elevated prostate-specific antigen (PSA) level by just a bit, but no one acted on it. Maybe they should have done that sooner.

Or maybe they should have had scans done, or more scans done, more frequently. And also, some patients will question if they themselves had done something wrong to cause cancer or a metastatic cancer — such as, were there certain activities they participated in that caused it? Or because one time they missed the checkup, or they didn't have checkups often enough.

We sometimes see that a patient is actually perseverating about these concerns, to a point where they can't move forward and focus on their treatment. We tell them that it's likely no one did anything wrong, and they did nothing wrong. We emphasize to the patients that it's important for them to be in the present, so they can focus their energy.

Pienta: How do the side effects of various treatment options figure into shared decision-making, and how do you discuss this with patients, since you're really on the front line, talking to them about this?

Reyes-Dagher: Fortunately, for most of the patients that we see, who are those with prostate cancer with limited metastases, the treatments are not too toxic. And some of the treatments can be modified as needed to further limit toxicity.

For this group of men, we tell them that if they wish, they can continue working through their therapy. Then men may ask if they can continue a favorite activity or activities. Almost always, they can.

However, if the metastatic cancer is already very advanced, then it may be symptomatic, which will make the treatments harder to tolerate.

Pienta: And of course, many, many guys, because it's prostate cancer, are worried about losing their ability to be sexually active. That's important — their sexuality is an important piece to their mental health and well-being. So we talk to them about options there.

Reyes-Dagher: What suggests that a patient may not be understanding the situation that he's in? What strategies do you use to help him?

Pienta: I think both of us find that the type of questions a patient asks is an important part of whether they're getting it. The classic physical cues, such as eye contact and body language, help us to assess if a patient and their family understand their options.

Especially early on, I think we've heard over and over again and seeing that we think people are understanding what we're saying. But they're so scared by a word they heard like "cancer" that they're not actually hearing us.

But often we say to people, why don't you record this visit with us, so that you can go back and listen? And if you come up with other questions, come back to us with those questions. That is part of engaging them and letting them know that they don't have to panic, that if they miss something, they have the ability to go back and listen.

So we suspect that the patient or family doesn't understand their situation when they don't have questions, or they have questions that aren't quite relevant. For example, we might be explaining how a treatment works. And the patient will ask, what time will I need to be here?

Or a patient may not, or barely, participate in the discussion, but simply want to get started on a therapy. When can we start? These are telling us they're not focusing on the bigger issues.

When a patient is not engaged in the decision-making process, going back to earlier in our discussion, we can ask, again, what can we do for you? What do you really want to get out of this visit? And then we can re-tailor discussion to meet their needs.

Reyes-Dagher: What role do you think cultural competency plays in how you communicate with patients?

Pienta: Well, you have to be aware. Here, it's really helpful to have some knowledge of your patient's cultural group. For example, if our patient is from a culture that has historically been treated badly, extra effort may need to be taken to try to avoid misunderstanding.

Some patients are really offended if they're kept waiting. That's something that we try to tell them right up front. For example, the first day of chemo is long, and there's a lot of waiting between different pieces of it. So [we try to figure out] how to explain that beforehand, and why there are delays, and ways they can manage it — what can they control? What can't they? Making sure, when there is going to be a lot of downtime, that they understand that they should bring their computer with them or books with them to try and get away from that.

Another thing that we try to be aware of is, how do people want to be addressed, and how do they want to address us? We will address people very formally until they ask us to do otherwise. Or sometimes we just say, how do you want us to address you? And are you comfortable calling us Ken and Diane, or do you want to call us Dr Pienta and Ms Reyes?

Having those conversations is part of the cultural competency, so to speak, and it also involves people in the discussion and shows that we care about what they think.

Reyes-Dagher: Ethnicity does impact conversation. Some more well-known ethnic traits that Americans need to be aware of are that, for example, some groups do not make eye contact during a conversation because they consider that to be rude. Or some do not ask questions or disagree with the doctor because they consider that to be rude.

There are other groups in which there's a male in the family who may not be the patient, but who speaks for all the family. Whatever family dynamic we notice, we go with that flow.

If we're not sure, we ask. We may say something like, let us know how we can help you in a way that you and your family are used to accepting help.

Pienta: Based on that, Diane, what metrics do you use to assess whether our communication with folks is being effective?

Reyes-Dagher: The most straightforward metric of communication effectiveness, I believe, is when we reach out to patients. Do they respond?

Sometimes, the patient prefers having another person manage their communication. But we reach an agreement. Then going forward, if we're reaching out to the patient and the patient does not respond to our communications, we go ahead and set up a clinic visit, so we can sort out how we'll improve communication.

Another metric of communication effectiveness is treatment adherence. An example of that would be if a patient's treatment plan is for an oral hormonal medication, and then they have an initial good response, and it's too soon to have a treatment failure, but their PSA starts rising. We reach out right away. We let them know they need a clinic visit, and that they'll likely need new scans and a new therapy because their current therapy does not seem to be working. At that point, a patient may say they've not been taking their oral therapy, perhaps owing to another medical issue.

Pienta: We really try to emphasize that, for patients, they need to have good communication with their providers. You have a quick turnaround time on those patient questions, because everyone appreciates a quick and respectful response to their questions. It really validates them.

Diane, this has been a wonderful conversation to talk about shared decision-making. Thank you very much. I really appreciate it and enjoyed it.

Reyes-Dagher: Thank you for inviting me. It was a pleasure.

Pienta: And thank you all for listening to this conversation on CareCues.

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