Effective and empathetic communication with patients and caregivers can be a challenging aspect of nursing care. The recent Oncology Nursing Society (ONS) Congress in Anaheim, California, featured a session focusing on this topic, presented by Joy Goldsmith, PhD, and Elaine Wittenberg, PhD, FACH, two communication specialists who serve as cofounders of the COMFORT Communication Project. In this interview, Dr. Goldsmith and Dr. Wittenberg delve further into their research in the field of provider-patient health literacy and share their evidence-based techniques for optimizing communication among the interdisciplinary oncology team.

Oncology Data Advisor: Thank you so much for speaking with me today. Would you tell us a little bit about the COMFORT Communication Project and an overview of the work that you do?

Elaine Wittenberg, PhD, FACH: We were in graduate school together, and we were invited by our dissertation advisor to write a book about palliative care. We'd both been interested in palliative care. The very first book project was, essentially, an extended literature review of the physician's perspective, issues, and roles, as well as the nuances of communication challenges in talking about palliative care, hospice, the caregiver's role, the family's role, and the team's role. When we finished that book, we decided the biggest piece missing in studying serious illness communication was the family caregiver­. This was 15 years ago. At the same time, we realized that there just wasn't enough education for medical students—and nothing for nursing students—about how to approach these kinds of complex conversations.

Over a series of 10 years, we conducted numerous communication research projects that included longitudinal interviews with cancer patients and their families as they journeyed from diagnosis to death of the cancer patient. Our goal was to understand what their challenges were, what the system issues were that were blocking them or making things difficult to have conversations, and what their information needs were. We also went into patients' homes and observed hospice interactions in which providers were going out into the home for the very first time to introduce hospice and the challenges that came with those conversations. Then we also spent time at a Veterans Affairs (VA) facility, following an interprofessional palliative care team at a time when palliative care was very new. We studied recorded conversations between families, patients, and interprofessional providers. Lastly, we spent time at a hospice inpatient facility where patients were taking their last breaths and families were making decisions about end of life. We took all of these experiences and research and wrote a second book that focused on family.

At the end of that project, we introduced the COMFORT model (Connect, Options, Making Meaning, Family Caregiver, Openings, Relating, Team). We identified these seven principles of health communication that were missing from provider education yet represented the patient and family perspective in terms of what they needed. It has grown from there. We've done a "dog and pony show" wherever we could speak about COMFORT. We've gone to social work conferences. We've gone to VA centers, where we spoke with janitors and receptionists. We've done a ton of medical education with medical students, nursing students, physical therapy students, and chaplains.

Then in 2015, we were funded by the National Cancer Institute to provide a specialized curriculum for oncology nurses, because we address the unique role of nurses in the work that we do and the COMFORT model really addresses that too. We trained about 350 oncology nurses at comprehensive cancer centers and community cancer centers in 42 states. It was a "train the trainer" program. They went home and trained who they wanted to train, and we tracked that as part of the project. In a five-year period, there were an additional 10,000 providers trained, all in oncology. Since then, we have moved into online education, and we are constantly contacted for resources and curriculum. We've developed a number of different tools and resources that accompany the curriculum.

Joy Goldsmith, PhD: We're from the communication discipline, but we've had to figure out how to translate it to clinical audiences. That's one reason we identified COMFORT as an acronym, which is really required to translate ideas, especially theoretical ideas, to clinicians so that they could have it in their pocket and it wouldn't be this bulky set of ideas. That gave us a framework out of which to function, build, test, assess, and then deliver and disseminate resources.

Dr. Wittenberg: We're very different. The other curricula out there are about learning a specific skill to go back and use. Our program teaches many different ways to accomplish something communicatively, and our goal is to say, "Here are these many different tools. Now pick the one that most closely aligns with your natural communication style and use it."

Dr. Goldsmith: And you're not going to be by yourself, because the patient is the other part of this equation. You can't control what they're going to understand, what they're going to think, and what they're going to say, which is sort of the assumption of the sender-based models that are preferred in medical education. These models have trickled down into nursing education, and there's nothing specialized for the nurse. The physician is not carrying that water in terms of the patient/family relationship—the nurse is.

Oncology Data Advisor: Right, like when you asked during the presentation how many nurses had received training for communication, and about half raised their hand. It's definitely something that's needed.

Dr. Wittenberg: We just did a national study last year of all of the BSN programs in the United States, and we found that only 0.6% had an actual class in communication. So, they raised their hand—"yes, I've had communication training"—but it's a concept that's kind of ephemeral and smoky. It's all this stuff that you can't measure or teach or deliver as a variable. That's one thing we are trying do. That's where COMFORT comes in.

Oncology Data Advisor: Right. That's very interesting.

As you mentioned yesterday, sometimes patients will also say, "I'm fine," or they're not ready to discuss certain topics. How should nurses approach these patients and make sure that the right information is delivered?

Dr. Goldsmith: Real-life communication science says that a lot of those moments require a presence and a relationship. If someone isn't connected or doesn't feel a sense of trust on some level with that provider, they are going to block or protect or not be open. Looking at communication as a relational building tool is our focus. There's not a sequence in a script that you can enact as the magic bullet, but rather it's being present and listening and trying to understand at least some dimension of that individual. We think that is how communication science helps us understand how relationships are cultivated. That's what we advocate: an iterative presence.

Dr. Wittenberg: We want providers to learn more about the patient and family's story. That's really the foundational element of the COMFORT model: to see, connect, and learn about the story in order to understand what they have to share and what they need, instead of going in thinking, "Oh, they're going to need this, I'll give them this piece of paper with information."

Dr. Goldsmith: So many times, patients and families will say, "No one ever told us that," or "No one ever explained that." Then you've got a provider saying, "I explained it, it's in the notes." They probably did, but the patient and family didn't process it. They weren't able to get it. It really requires an understanding that your response is based on another person's response, and you're creating meaning together. A lot of that connection never really happens in clinical communication.

Oncology Data Advisor: When we broke into groups at the table yesterday, one of the nurses at my table said that one of her biggest challenges is that she's at a very small community cancer center. Sometimes patients go there for chemotherapy, but they go somewhere else for surgery or radiation. She said that she struggles with what patients have already been told at the different centers and how she balances it with what she's telling them now. Do you have any advice for that?

Dr. Goldsmith: The last module in COMFORT is T for "team." Team takes many different shapes. I live near a place like you just described, a very small community hospital where people get sent out for other components of their care, and they are going to get different messages. The nurse, I think, is the most pivotal professional in that phenomenon. That's part of their training, but it's also part of what we teach in the T module: different strategies to try to get people on the same page. One of the interdisciplinary powerhouse ideas in T is that there should be a discussion about language with people you're working with, whether it's a super-structured team or a point person at the next place of care.

It's talking about the talk. With 20 extra seconds, you're going to reduce the confusion that's going to take two hours to clarify a few weeks later. Really, interdisciplinary education is fairly new. It arrived on the scene within the last 20 years. But having communication components integrated into it is totally essential. There are big hospital systems with an organized team, and then you get a hospital where there are two nurses that work with one physician, and that's the team—but there's always going to be communication. They need the tools and the prompts to say, "Can we talk about the exact language you used?"

Dr. Wittenberg: That's a limitation of some other models that say, "Tell me what you know." The patient might say, "Well, I know about hospice." But we go a little deeper: "How has hospice been explained to you?" Physicians and other health care providers don't always explain it the same way, and that's particularly tricky when we talk about palliative care.

Oncology Data Advisor: Definitely, and this is fantastic advice. So, do you have any take-home messages for people that may not have been able to attend the presentation? What's the most important thing that you would like nurses to know?

Dr. Goldsmith: For me, it would be the core model, which says that this is not delivery of information; this is transactional and relationship-building. Even if you're not going to see that patient ever again, even if you know you only have six minutes, it's still making a connection to their life outside of the clinic. That's the gateway to shared understanding.

Dr. Wittenberg: We didn't get to highlight this very much in the presentation, but sometimes communication is doing nothing and not saying anything.

Dr. Goldsmith: Yes, just being there.

Dr. Wittenberg: Communication does not equal action, and that can be revolutionary to conceptualize and understand and enact.

Dr. Goldsmith: It is. The very biggest part of communication, which could be 80% or 90%, is nonverbal.

Dr. Wittenberg: Yes, and it's pausing and just listening. Then we also have the M of COMFORT, which is about making meaning. This also addresses just being present and being able to have that interaction. It's as simple as taking a deep breath before you walk into the room in order to create mindfulness.

Dr. Goldsmith: Be aware of the messages you're sending when you're talking or when you're not talking—those nonverbal components. Another take-home would be to visit our website to see the free nursing resources we have there.

Dr. Wittenberg: The COMFORT Communication app is a free resource that translates all of the COMFORT model into tools. It's all free. It's a web-based interface, so you're not really downloading anything; it's designed for easy viewing and usability.

The other unique thing about our work is that it's all evidence-based. It's all based on our own research and that of many other scholars who are doing communication research. We really are comprehensive and give consideration to all the stakeholders. The patient is part of it, and the caregiver is part of it, as well as a variety of health care providers who inform the strategies that we suggest and recommend.

Dr. Goldsmith: Nothing we do is anecdotal. We use some anecdotes, but nothing's based on them. It's all based on research, and our content is based on patient and family stories. They're real, so that does set us apart—way apart.

Oncology Data Advisor: Thank you so much. This has all been really wonderful information, and it's so exciting to learn more about your work.

About Dr. Goldsmith and Dr. Wittenberg

Joy Goldsmith, PhD, is a Professor of Communication Studies at the University of Memphis, as well as the Founder and Co-Director of the University of Memphis Center for Health Literacy and Communication. Her research centers on communication among members of the interprofessional health care team. Together with Dr. Wittenberg, she serves as cofounder of the COMFORT Communication Project. Dr. Goldsmith has published several books and numerous articles focusing on interdisciplinary communication interventions, novel communication approaches and tools, and health literacy research outcomes.

Elaine Wittenberg, PhD, FACH, is an Associate Professor of Communication at California State University, Los Angeles. Her research focuses on communication among patients, caregivers, and health care providers, as well as education for nurses in these areas. Together with Dr. Goldsmith, she serves as cofounder of the COMFORT Communication Project. Dr. Wittenberg has published several books and more than 150 journal articles focusing on interdisciplinary health care team communication and dynamics.

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