Donald Sullivan, M.D., M.A., M.C.R., understands the importance of clear communication. Before becoming a physician-scientist, he served as a combat medic in the U.S. Army for six years as a reservist, deploying to Germany. Today, he is an affiliate researcher of health services research and development in the Center to Improve Veteran Involvement in Care, V.A. Portland Health Care System. He’s also an associate professor of medicine (pulmonary and critical care medicine) in the OHSU School of Medicine, and a member of the Cancer Prevention and Control Program at the OHSU Knight Cancer Institute.
Sullivan is interested in improving patient outcomes and their experiences through advances in the delivery of comprehensive cancer care. He spoke with Cancer Translated about his newly published viewpoint in JAMA Oncology, and his commitment to putting the patient’s desires first.
Cancer Translated: Your opinion piece is about miscommunication in cancer care, specifically between providers and patients. In your experience, how prevalent of an issue is this?
Donald Sullivan: It’s hard to know how much is going on, but based on my clinical and research experience, I think it’s pretty common. Communicating with a patient about a serious illness is difficult; as care providers, we are trying to preserve hope above all else.
When you need to deliver serious news regarding a life-threatening illness, I think most physicians tend to deliver the news in a kind, gentle way — as a form of empathy. However, despite the best of intentions, I think that can actually contribute to the miscommunication piece quite a bit. That “hope for the best, prepare for the worst” approach can actually contribute to the miscommunication itself. Hope is important, but a patient understanding the severity of their disease so they can make informed decisions is a key component, too.
CT: Why is clear and honest communication so important, particularly in cancer care?
DS: We know that a cancer diagnosis is a stressful, life-changing experience. In the paper, we talk about how communication shapes someone’s experience. We of course want to lessen the impact of a frightening experience for a patient, but we also want to ensure the patient understands what we’re trying to convey.
Medical education traditionally did not emphasize the importance of communications skills. As a result, many physicians didn’t ever receive formal educational training on how to deliver life-impacting news to a patient. I’d like there to be more focus on thinking about what kind of communication training is needed -— especially around serious illness, because those conversations are so complex and difficult.
In my mind, we should think about communicating just like any procedural skill: you wouldn’t send a surgeon into the operating room without training them about how to do those procedures and do them well. But there isn’t that same level of emphasis on training providers to deliver tough news to patients. To me, that communication skill requires training, mentorship, and practice.
Ideally, we want to see the patient and their care team work together to make health care decisions that aligns with the patient’s goals and values. Decades ago, there may have been one treatment option available to a patient facing a cancer diagnosis. Thanks to the amazing advancements in treatment options, there are often multiple treatment paths and options. As patients are rightfully more involved in their personalized treatment plan, the need for everyone to be on the same page is higher than ever. We have moved away from the paternalistic view that doctors are the ones to make the call: patients are the central part of their treatment plan and we need to ensure they are hearing and understanding the important details about their care to be able to make informed decisions.
CT: Can you talk more about the negative consequences that can occur from communication breakdowns? What does that look like in real life?
DS: I think there’s a lot of direct and indirect effects. One of the examples we note in the paper is when a surgeon tells a patient they “got it all” — often patients thought that meant they were cancer-free. Then when an oncologist follows up to discuss next steps for chemotherapy treatment, the patient can be confused, upset or angry to hear more treatment is required because they thought all the cancer was gone. The patient could even refuse future therapy which could impact their survival.
There are a lot of references in literature that discuss the economic, social, psychosocial, emotional and other costs surrounded by miscommunication. Anxiety and distress can arise with patients not knowing what to believe and not knowing which clinicians or sources they can trust.
Finally, I think it’s incredibly important to look at this issue through a diversity, equity and inclusion lens: when you’re talking with a patient from a disadvantaged population that has experienced systemic discrimination, misunderstandings in communication can exacerbate mistrust when trust itself may already be fragile. I believe those are cases where we need to think long and hard about making sure that communication is as effective as possible.
CT: You and your co-authors created a table to share examples of how patients interpret clinicians’ statements, and potential alternatives to avoid confusion. What are some key takeaways for providers to know?
DS: The way I think about developing and practicing communications skills is that it should be required longitudinal learning, meaning continued medical education support and resources. These are skills that can be learned and taught, so we should be thinking about how can we support physicians with those kinds of training opportunities throughout their entire career.
It’s important to remember that the key here is not just about communicating, but listening, too. Teach-back techniques have been proved to be incredibly effective. And what I mean by that is having physicians ask patients to repeat back what they heard — in their own words — to ensure they’re taking away the same key messages. When patients and their families are hearing this information, they’re in information overload. Teach-back techniques can be an incredibly effective way to understand what they’re hearing, or not hearing.
To help avoid that information overload, we can be thinking about whether there is information that patients can receive prior to appointments, either through your institution or trusted resources like the American Cancer Society. Some people process information better in advance, or after, a discuss with their physician. As a cancer institute, we need to be vigilant in thinking about what we are doing to improve communication among cancer clinical teams.
CT: And what would you like patients to take away from this topic?
DS: For patients, hopefully they feel comfortable asking questions and serving as active participants in their care. If a patient doesn’t feel comfortable asking questions, that’s a red flag for me and they need to find a new cancer team.
In an effort to help empower patients in their care, I’ve been developing a patient-facing tool called “iDECIDE”, designed to help patients convey what’s important to them and how those can be considered in treatment decisions with their clinicians. We’re actively studying this, and thus far, we’ve been happy with the progress that’s been made. It’s filling a real gap, and patients report they’re feeling more engaged and more empowered.
CT: What did you learn in the process of writing this viewpoint — did it challenge some of your previously-held assumptions, or strategies you learned in med school?
DS: For me, communication wasn’t emphasized during medical school or residency training. And I know I’m guilty of using everyday phrases or common language — which can lead to miscommunication— so this topic has given me a lot to think about from a research and clinical perspective. I’m fortunate to have received training as a fellow and I’ve had some great mentors in the palliative care division at the OHSU Knight Cancer Institute and OHSU School of Medicine to help me develop some serious illness communication skills.
Above all else, we can always stop and ask our patients how best they would like to receive information. The onus is on us on the clinical care team to ensure patients understand— it’s not the patient’s responsibility. By providing the time and space to ask questions, that empowers patients and helps break down the inherent power imbalances between clinicians and patients.
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