What Are Ethical Dilemmas in the Research Nursing Community, and How Do We Manage Them? With Doyle Bosque, BSN, RN, CNML

Oncology Data Advisor: Welcome to Oncology Data Advisor. Today, we're here at ONS Congress and I'm joined by Doyle Bosque. Thanks much for coming on today.

Doyle Bosque, BSN, RN, CNML: Thank you for having me.

Oncology Data Advisor: Would you like to introduce yourself and share what you do at MD Anderson?

Mr. Bosque: I am Doyle Bosque, and I'm the Director of Nursing Programs Research. My job entails increasing the collaboration between the research community and the frontline nursing to ensure that both sides understand the inner workings of the clinical trials to provide patient care, patient safety, and clinical trial compliance, so both sides understand how to manage those patients on those clinical trials.

Oncology Data Advisor: You presented today on moral and ethical dilemmas. What are some of these unique dilemmas that are inherent in oncology care?

Mr. Bosque: So, there's a difference between research nurses and clinic nurses. The research nurses have the added responsibility of managing clinical trials that we put our patients on. They have that responsibility plus the responsibility of being a nurse. So, it presents unique challenges and ethical dilemmas when you have to advocate for the patient, and you have to advocate for the clinical trial. Sometimes there's a conflict between the two, so it causes some stress on the research nurses to learn how to handle those situations.

Oncology Data Advisor: How did your team go about designing the study and what were the results that you found with it?

Mr. Bosque: It was actually brought up by a question. I was sitting with the Ethics Department at MD Anderson, and the question was brought up, "Do research nurses have ethical dilemmas?" And I'm saying, "Oh boy, do they." And they said, "Well, do they." So, from there, of course there are other questions. Do they know how to handle the ethical dilemmas? Do they have resources to help them? Do they even know what an ethical dilemma is? All these questions were coming out.

So, we did a survey to get some responses back from the research community. From there we learned that, yes, there are ethical dilemmas, yes, they need resources and, yes, they need tools to gain the experience of how to handle these situations. So, we came up with a program, including four parts based on their survey, where we would give them certain tools to help them understand topics such as virtual ethics and narrative ethics, and give them tools—homework—that they would bring back to the next session and then we would practice. So, it was an engagement between us and the research nurses to help them with these ethical dilemmas as they come up.

Oncology Data Advisor: Right, right. How can these results that you found be used to address dilemmas in practice?

Mr. Bosque: So, with the sessions that we're doing and giving them the tools, when they come back at that second session, it's just a roundtable discussion where we present a scenario, they use the tools that are given them, and we have breakout sessions. We practice those tools and we guide them after the discussion to say, "Okay, did you think about this? Did you think about that? Could you have done this better?" So, we're not giving them a tool and just abandoning them. We really wanted the engagement between to give them practice before they actually encountered this.

We also informed them that it takes practice. It takes practice to learn how to deal with these ethical dilemmas, and that here are your resources to reach out. You have to practice, you have to debrief after every encounter so you learn from that experience, reflect on it, reach out to your ethics specialist within your institution, and get their guidance. And also, again, to practice, keep practicing because we have ethical dilemmas not only as nurses but with our families and with our friends. So, these tools can be used in any situation when they come up. Again, I emphasize you have to practice and practice and please reach out, that you're not alone. In fact, your colleague may have experienced the same exact thing and can help you with this. So don't be afraid to reach out.

Oncology Data Advisor: Definitely. That's so important.

Mr. Bosque: Yes.

Oncology Data Advisor: Great. So, I know you're also working with Maria Badillo to develop an electronic pill diary for oral compliance. Would you like to explain a little bit more about that as well?

Mr. Bosque: This is, to me and Maria, a very important initiative because it deals with patient safety, patient care, and I keep coming back to clinical trial compliance—all three of those elements. When a patient is on, say, an oral medication therapy, they're given a paper diary. We found that when they come back, say, in a month for a follow-up, they would be sitting in the waiting area filling this diary out for 30 days. Now, you're not going to remember all of that for 30 days. So, you're not really getting real-time information and you're not getting accurate information, which can skew the data for the clinical trial.

Maria and I were talking about it; wouldn't it be great if we could have some electronic mechanism that would give you real-time information and engagement between the patient and the nurse in the medical chart? We have Epic at MD Anderson, so we use MyChart. We got with IT and said, "Look, this is what we want to do. We want real-time data information. We want it simple because if the patient sees they have to fill out all these things, they're not going to do it." We just wanted four dropdown boxes. Did you take the medication? What time? Any complications? If you didn't take it, why didn't you? We also had asked IT to make it so when they took it or didn't take it, it would send a message to the nurse's message box to where they would see, do I need to follow up, or do I not need to?

So, we started with, I think, seven studies and it was phenomenal. It took some education—again, change takes some time—, and some reinforcement. But because it was so simple—you could do it on your iPhone—it was four questions, and they were done. There was over a 95% participation rate. And on all the trials, the patients, once they got used to it, loved it. They didn't want to drag around that paper. A lot of times they would forget and it would prompt them, okay, you haven't taken your medication today or did you take it? You haven't filled out the MyChart. So, it was a constant circle of information, real-time data to where the nurse knew what was going on and they would be able to catch something. Let's say the patient didn't take it.

In one instance we found the patient was taking more than they were supposed to because in their mind, if you take more, it helps more. Well, that's not always the case. We were able to catch issues as they arose faster than waiting for 30 days when they came back with a piece of paper and not really getting real information.

So, we're still working on this. It's a big endeavor. We are piloting, like I said, seven clinical trials. We now have other interest from other departments. They say, "Hey, what is this electronic pill diary that you're talking about?" So, we're actually going to meet and talk to a couple people this coming week that want to participate. The goal is we get the clinical trial medications in MyChart, then we move on to the standard-of-care medications. It's not just simply for research, it's going to be for the entire institutional patient population. So, it's just a step, I think, in the right direction for getting accurate information for the clinical trial. Again, it's those three elements: patient safety, patient care, and clinical trial compliance.

Oncology Data Advisor: Awesome. That's so exciting.

Mr. Bosque: Yes, it is. We've worked on this for three years and we have not given up. In fact, we have IT now so interested that they don't want to give it up either. They're willing to hire more people to make sure that this works.

Oncology Data Advisor: Oh, that's great.

Mr. Bosque: So, it's generating interest. It's taken a while and persistence. But Maria's a great partner to be with and she's been persistent just like I have. And we're going to see this thing through until it really goes live.

Oncology Data Advisor: Awesome, I'm excited to see it. Great, well thank you so much for talking about both of these today. It was really great meeting you.

Mr. Bosque: Thank you very much. It was great to meet you, and I'm glad that you're here and I'm here and we can get this information out to everyone.

Oncology Data Advisor: Definitely. Absolutely. Thank you again.

Mr. Bosque: Thank you.

About Mr. Bosque

Doyle Bosque, BSN, RN, CNML, is the Director of Nursing Program Research at MD Anderson Cancer Center, where he oversees the Research Professional Community and encourages collaboration and education to further ensure compliance and patient safety. Mr. Bosque is passionate about maintaining a human connection in clinical trials and throughout treatment.

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Transcript edited for clarity. Any views expressed above are the speaker's own and do not necessarily reflect those of Oncology Data Advisor.