Perspectives on Oncology-Specific Language During the Coronavirus Disease 2019 Pandemic

This qualitative study proposes a practical communication guide designed for oncologists to assuage the fear, anger, and anxiety among patients with cancer during the coronavirus disease 2019 pandemic.

Key Points

Question

How can oncologists communicate with patients in challenging situations during the coronavirus disease 2019 pandemic?

Findings

In this qualitative study of 8 physicians and 48 patients with cancer, the physicians identified 8 oncology-specific scenarios in which communication with patients had been challenging, and the patients provided their reactions to each scenario. These physician and patient insights, along with principles identified through literature review by health communication experts, were synthesized for application to the clinical scenarios.

Meaning

This study suggests that communication needs in cancer care can be identified to inform the development of a practical, evidence-based communication guide that fulfills the need of patients and oncologists.

Abstract

Importance

The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed the US health care system, causing an influx of patients who require resources. Many oncologists are having challenging conversations with their patients about how the COVID-19 pandemic is affecting cancer care and may desire evidence-based communication guidance.

Objectives

To identify the clinical scenarios that pose communication challenges, understand patient reactions to these scenarios, and develop a communication guide with sample responses.

Design, Setting, and Participants

This qualitative study that was conducted at a single Midwestern academic medical center invited physicians to respond to a brief semistructured interview by email or telephone and then disseminated an anonymous online survey among patients with cancer. Oncology-specific, COVID-19–related clinical scenarios were identified by the physicians, and potential reactions to these scenarios were gleaned from the patient responses to the survey. Health communication experts were invited to participate in the iterative development of a communication guide, comprising 3 essential communication principles and strategies and informed by insights from physicians and patients. This study was conducted from March 25, 2020, to April 2, 2020.

Interventions

Expert review, interviews, and surveys assessing challenging situations specific to cancer management during the COVID-19 pandemic.

Main Outcomes and Measures

Oncology-specific, COVID-19–related clinical scenarios from physician interviews; responses to each scenario from patient surveys; and applicable communication principles from health communication expert literature review.

Results

Of the 8 physicians who participated in interviews, 4 were men (50%) and 4 were women (50%). These physicians represented the following disciplines: internal medicine (n = 1), hematology/oncology (n = 2), radiation oncology (n = 3), and surgical oncology (n = 2). Their disease site specialization included cancers of the breast, head and neck, melanoma, and gastrointestinal and genitourinary tracts. A total of 48 patients with cancer completed the online survey; no demographic information was collected from the patients. The physicians identified 8 oncology-specific, COVID-19–related scenarios in which communication might be challenging: (1) worse outcomes from COVID-19, (2) delay in cancer screening, (3) delay in diagnostic workup, (4) delay in initiation of treatment, (5) offer of nonstandard treatment, (6) treatment breaks, (7) delay in follow-up imaging or care, and (8) inability to be admitted into the hospital for management. Potential patient reactions to each of these scenarios were compiled from survey responses. For most scenarios, patient reactions involved anger, fear, and anxiety (eg, “I’m scared”; “This isn’t fair. I am upset.”). These emotional patient responses informed the selection of the 3 general communication principles, which suggested language and strategies that physicians can use to respond to patients.

Conclusions and Relevance

In this qualitative study, physicians and patients identified communication needs used by health communication experts to inform the development of a practical, evidence-based communication guide for oncology care during the COVID-19 pandemic.

Introduction

The coronavirus disease 2019 (COVID-19) pandemic has created unprecedented health care changes in the US, causing an influx of patients who need resources and forcing physicians to make difficult choices about patients with other, nonpandemic health needs. Patients with cancer may have worse outcomes from COVID-19 infection,¹ yet they still need to engage with the health care system to receive cancer treatment. In this new environment, oncologists must depart from the usual routines to keep patients with cancer safe while conserving resources. For many oncologists, providing such care has necessitated changing the standards of care. The ethical imperative to shift from traditional patient-centered decision-making toward a public health focus² can be especially difficult to convey.³ Communicating these uncharted decisions, which can instill anxiety and even anger in patients, may be challenging.

Inspired by the COVID-19 guide published by VitalTalk,⁴ we, along with a multidisciplinary group of health communication experts, developed a communication guide for oncologists. Our objectives were to (1) identify the clinical scenarios that posed communication challenges, (2) understand patient reactions to these scenarios, and (3) develop a communication guide with sample responses.

Methods

This qualitative study was determined to be exempt by the institutional review board of the University of Michigan, which waived the documentation of written informed consent. Participants’ voluntary submission of a response after being informed of the purpose was considered sufficient, and requiring written informed consent could compromise the confidentiality and safety of participants. We followed the Standards for Reporting Qualitative Research (SRQR) reporting guideline,⁵ although data collection, analysis, and processing were performed urgently given the necessity of providing timely guidance to frontline clinicians. This study was conducted from March 25, 2020, to April 2, 2020.

To identify communication challenges, we invited 10 physicians practicing at a single Midwestern academic medical center to respond to a brief, semistructured questionnaire. These physicians were purposely selected for being diverse in age, sex, rank, specialty, and cancer site specialization. Each received an email invitation and was asked to respond either by email or telephone. They were prompted to share their perspectives on communication needs during the COVID-19 pandemic. We conducted a thematic analysis of these open-ended responses, and the sample size was determined by thematic saturation.⁶ Eight of the 10 physicians emailed detailed replies, and the other 2 offered to participate after a short delay. Given that saturation was achieved, the 2 physicians were not interviewed.

After the identification of COVID-19–related clinical scenarios, an anonymous online survey was disseminated by the Patient Family Support Services at Michigan Medicine (Donna Murphy, LMSW, University of Michigan, sent March 30, 2020) to an internal LISTSERV of patients with cancer who had previously agreed to complete surveys. The survey was developed using standard methods,⁷ including review by survey experts, and described the scenarios identified by physicians. Patients were asked to respond (in free text) with questions or reactions.

Health communication experts (2 leaders and 12 collaborators) were invited to participate in the development of the communication guide. Two of us served as leaders (K.R., L.C.A), and we and 6 of the collaborators are members of the Center for Health Communications Research at the University of Michigan with expertise that includes decision-making, behavioral science, and survey design. One of us (K.R.) invited the other 6 collaborators, all of whom have advanced knowledge of self-determination theory, motivational interviewing, or patient-centered communication. This team of experts developed 3 core communication principles (recognize and normalize emotions; use the 4Cs: context, consideration, caring, and commitment; and use the Ask-Tell-Ask approach) to apply to the physician-identified clinical scenarios by synthesizing several evidence sources (Table 1). First, the team of experts examined general communication guidelines developed for health care practitioners.^8,9 Second, they synthesized the principles of self-determination theory^10,11 and strategies from motivational interviewing¹² to identify relevant principles, including reflecting back patient emotion and the Ask-Tell-Ask approach.¹³

Table 1. Three General Communication Principles to Apply to Challenging Clinical Situations.

Principle	Sample use
Recognize and normalize emotions
Patients may express intense emotions during these difficult situations. Although a common reaction to intense emotion for many physicians is to fix it, a better approach is to reflect the emotion back to the patient, which demonstrates the physician understands and empathizes. It is important to not minimize the patient’s concerns by reflecting with lesser intensity. For example, if a patient says, “I’m terrified,” the physician should not reflect back with a minimizing statement such as, “You are a little concerned.” Normalizing feelings lets patients know that others feel this way and that they are not alone in their emotional responses. Reflective statements also convey acceptance and normalization of emotion. Reflecting feelings should precede the 4C process.	You are feeling powerless because you cannot start treatment. You are confused about these changes in your care. You are frustrated that you are not able to schedule the appointments you normally would. It is normal to feel anxiety about having to come into the hospital right now.
Use the 4Cs: context, consideration, caring, and commitment
First, provide context to help the patient understand the reasons behind an action. Patients require the rationale for alterations of care to reduce their distress. Second, provide consideration, or show the patient how their care team considered their unique needs. Third, show caring by expressing concern and recognizing emotion. Fourth, show commitment to the patient’s ongoing care. The 4Cs are proceeded by reflection and normalization as indicated by the degree of patient emotion.	A 60-year-old woman with early-stage breast cancer is being considered for postlumpectomy radiation. Because of the pandemic, your practice is delaying the start of adjuvant radiation for patients with breast cancer. The patient is upset when she finds out that she is unable to start treatment soon. Context: If it is okay, I would like to try to explain. We need to think carefully about how to take the best care of you while preventing you from getting the virus. Consideration: After discussing your case with your team, we think the best plan is to delay the start of radiation for a couple of months. Caring: It sounds like you are worried about delaying radiation. I want what is best for you. Although I wish we could start, you will be safer and we will reduce your risk of being exposed to the virus by waiting. Commitment: As we navigate these challenging times, we will work together to get you the best possible care while keeping you as safe as possible.
Use the Ask-Tell-Ask approach
The Ask-Tell-Ask approach prepares patients to receive complex information. Assess the patient’s baseline understanding, and ask for permission to provide new information. New information is provided (tell) followed by a second ask, which encourages the patient to respond. These steps support patient autonomy and reduce resistance to receiving information.	A 56-year-old patient undergoing immunotherapy for metastatic non–small cell lung cancer is told about a treatment break because of COVID-19. Ask: What have you heard about the coronavirus and how it might affect patients with cancer? Tell: We think it is safest for you to take a treatment break and minimize the number of times you have to come into our facility for now. This means stopping treatment for a short time. Ask: What do you make of all this?

Abbreviation: COVID-19, coronavirus disease 2019.

Examples of language that oncologists could use to respond to patient reactions were developed by a physician (L.A.G.) and then iteratively refined by the health communication experts to incorporate the core principles described. The guide was reviewed by the physicians who had served as the initial participants to enhance the trustworthiness of the identified communication challenges and the relevance of the suggested language.

Results

Of the 8 physicians interviewed, 4 were men (50%) and 4 were women (50%) whose seniority ranged from resident to department chair. These physicians represented the following disciplines: internal medicine (n = 1), hematology/oncology (n = 2), radiation oncology (n = 3), and surgical oncology (n = 2). Their disease site specialization included cancers of the breast, head and neck, melanoma, and gastrointestinal and genitourinary tracts. A total of 48 patients with cancer completed the online survey. No patient information was collected because the survey was anonymous.

Eight oncology-specific, COVID-19–related scenarios (Table 2) were identified by these 8 physicians based on recent direct patient responses they encountered or patient responses that they believed would arise. These scenarios were (1) worse outcomes from COVID-19, (2) delay in cancer screening, (3) delay in diagnostic workup, (4) delay in initiation of treatment, (5) offer of nonstandard treatment, (6) treatment breaks, (7) delay in follow-up imaging or care, and (8) inability to be admitted into the hospital for management. Patients with cancer may be concerned about contracting COVID-19 given reports that they are likely to experience worse outcomes than those without preexisting conditions. These patients may be due for additional screening that must be delayed because of the pandemic, such as a chest computed tomography scan for those who completed head and neck cancer treatment. Diagnostic screening may also be delayed, such as a bronchoscopy for those with lung cancer. Initiation of treatment may be deferred; according to 1 physician, “I’m having to tell patients they can’t have surgery, and I don’t [know] when they’ll be able to.” Patients may be presented with nonstandard treatment options, as 1 physician reported, “When explaining why a certain treatment option isn’t available right now, a patient responded with, ‘Why do you get to choose who lives and who dies?’” After high-risk exposure to COVID-19, patients may be asked to take a treatment break, such as a break from radiotherapy. Follow-up imaging scans may also be deferred, and hospital admission for cancer management may be restricted to certain situations.

Table 2. Potential Physician Responses to 8 Oncology-Specific Coronavirus Disease 2019 (COVID-19)–Related Scenarios.

Scenario	Patient reaction and statement	Potential physician response
Worse outcomes from COVID-19	Am I going to do worse if I get infected because of my history of cancer?	It is natural that you are worried. People with contributing factors (eg, cancer, age ≥60 y, or other medical problems) seem to be at higher risk for complications from COVID-19. That is why it is important for you and those around you to practice good handwashing and to avoid contact with others as much as possible. What other information may be helpful for you?
Delay in routine cancer screening	What if I have cancer, and you do not catch it in time because of this delay?	Cancer is scary, and the thought of not finding it can be worrisome. However, this screening test is specifically to catch early cancers. Delaying your test could help reduce your risk of exposure to the virus given that we are expecting more and more people with COVID-19 to be coming in.
Delay in diagnostic workup	Does this mean I will not get treatment until this test is done?	You are anxious to get started with treatment, and that is natural. Unfortunately, we need to have all the information before we can decide on the right treatment. Because of the COVID-19 crisis, we will need to wait. We will stay in touch, and I will work with you to get this done as soon as we can after the crisis is over.
Delay in initiation of treatment	Is it not important to treat cancer as soon as it is discovered?	Cancer is scary, and it is natural to feel like you need to do something right away. For some cancers, it can be okay to wait a little while to start treatment.
Offer of nonstandard treatment	I feel like you are not giving me the best treatment you can.	You are worried we are not giving you the best possible care. I would like to explain the rationale for your treatment plan change. We balanced the risks of changing to a different cancer treatment with potentially suppressing your immune system, which we are concerned about because of COVID-19. We think this option offers the best way forward with your care.
Treatment break	Am I more likely to have my cancer come back if I have to take a break from treatment?	You are worried that the treatment break will increase your chances of recurrence. And you are right that we do not know for sure how this treatment break will affect things. However, we think that for most patients with your type of cancer, taking a short break from treatment will not be a problem.
Delay in follow-up imaging or care	What if my cancer comes back and you do not catch it?	You are scared that the delay in your surveillance testing will cause us to miss your cancer coming back. You are right that we cannot know for sure, but I am also worried that now is not the best time for people to come in for tests when we are dealing with so many patients with COVID-19.
Inability to be admitted into the hospital	Why is my life not as valuable as the life of someone with COVID-19?	You are upset that we are not able to admit you because of COVID-19. It feels unfair. If it is okay with you, I would like to explain why we are doing things this way. We are trying to balance the need to take the best possible care of you, to protect you from the virus, and to care for large numbers of new patients with COVID-19. There is no easy answer. Overall, we think it makes the most sense to manage things as an outpatient.

The open-ended responses from patients with cancer illuminated their perspectives on these 8 physician-identified scenarios. Regarding the worse outcomes from COVID-19, patients raised their fears about being vulnerable (“Am I more susceptible to getting the virus?”) or not being able to prevent contracting the virus. Regarding delays in cancer screening, patients were worried about the late discovery of a new malignant neoplasm (“What if my cancer comes back and by the time I do get screened it’s too late?”). Regarding diagnostic workup delays, patients weighed the seriousness of cancer against COVID-19 (“Why is COVID considered more critical than cancer?”). When asked about delaying the initiation of treatment, patients had strong emotions, stating, “Why am I being punished when I followed directions and made sure to self-isolate?”

In situations in which patients may be offered nonstandard treatment, patients noted feeling unimportant (“You’re making me feel that my care and health aren’t important to you.”). Regarding the necessity of treatment breaks, patients raised the likelihood of bad outcomes (“This sounds like a death sentence.”). Regarding delaying follow-up imaging or care, patients expressed feelings of abandonment (“You’re leaving me to deal with this alone.”). For most scenarios, patient reactions involved anger, fear, and anxiety (eg, “I’m scared”; “This isn’t fair. I am upset.”).

These emotional patient responses informed the selection of the 3 general communication principles by the health communication experts. The final communication guide summarized these overarching principles and suggested language to guide clinicians. The 3 principles and sample use are presented in Table 1. Table 2 shows how these principles can be applied by oncologists to each of the 8 scenarios. The full communication guide with additional examples is available in the eAppendix in the Supplement.

Discussion

As oncologists face new clinical challenges in cancer care during the COVID-19 pandemic,¹⁴ they may encounter scenarios such as those described herein. In this environment, oncologists may find advantages to implementing the communication principles and techniques presented. These principles and strategies were informed by insights from the experiences of both physicians and patients with cancer. Ensuring good communication during the pandemic is one way to preserve critical relationships between patients and oncologists.¹⁵

Limitations

This study has some limitations. Because of the urgency of creating a communication guide, not all stakeholder perspectives were represented. Although a diverse group of health communication experts were involved, the physician and patient participants were from a single academic medical center. As such, their experiences may not be representative of clinical encounters in other contexts. Nevertheless, we believe that this effort produced an important, evidence-based guide, the use of which should be evaluated in future studies.

Conclusions

This qualitative study provides a practical guide for communication in cancer care during the COVID-19 pandemic. We believe that it fulfills an urgent need for patients and oncologists.

Supplement.

eAppendix. Oncology Language for the COVID-19 Pandemic