Patients with Advanced Cancer Reveal Wide Variation in Perceptions of Oncologists’ Communications as Harmful

Extensive research has been carried out on how oncologists communicate with their patients. The National Cancer Institute (NCI) emphasizes the unique elements present in communication in cancer related to the fear and uncertainty raised by a cancer diagnosis and the arduous, complex, and expensive treatments that patients must often undergo. However, the NCI, like many studies and guidelines, addresses the topic from the clinician’s perspective, rather than the patient’s view.

To restore some balance on this topic, Dutch researchers have studied the perspectives of patients with advanced cancer on  types of communication they perceive as harmful. The results of the study, published in Cancer, demonstrated that statements making vague promises instead of suggesting specific future steps, being overly directive in the advice proffered, or ignoring patients’ emotions, could be harmful to patients. The research team, led by Jeanine Westendorp MSc a Junior Researcher in Social and Behavioral Sciences at Leiden University in the Netherlands, stress that clinicians can reduce potential harm to their patients by avoiding the behaviors patients viewed as most harmful.

This study consisted of an online survey among patients with advanced (incurable) cancers. The survey was developed through a multi-step process. First, the project team, which consisted of oncology, palliative care, and communication experts, along with patient representatives, created a list of potentially harmful communications identified from 11 relevant articles published after 2000, located via a search of PubMed and Google Scholar. The final communication examples agreed on fell into four broad categories: (1) decision making, e.g., not involving patients in treatment decision-making or not discussing palliative alternatives; (2) information provision, e.g., giving/not giving information about prognosis, or use of medical jargon; (3) empathy, e.g., not responding to patient emotions or not listening to the patient; and (4) using war metaphors, e.g., talking about the “battle against cancer” (reviewed in a separate report).

The final set of communication examples falling in the decision-making, information provision, and empathy categories were transformed into 19 situations that could potentially be unnecessarily harmful to patients with cancer, along with alternative communications that could be potentially helpful. Patients were presented with each of these situations and  asked whether they thought the situation could be harmful to patients. If a patient responded that the situation could be harmful, they were asked whether they regarded the communication examples as harmful or helpful. There were also open-ended questions where patients could provide additional suggestions.

Patients were recruited between June and November 2020 if they were aged 18 years or older, had incurable cancer, and had sufficient Dutch language skills. The project team approached patients via cancer organizations such as the Dutch Breast Cancer Association (BVN), Dutch Federation of Cancer Patient Organizations (NFK), and kanker.nl (Dutch Cancer Foundation). They also recruited through social media advertisements and by contacting participants from previous studies. Of the 74 patients who completed the survey and were included in the final analysis, most were women (92%), married (70%), and had breast cancer (78%), and the majority were receiving hormonal therapy (54%) or chemotherapy (26%).

Based on the responses to the 19 situations, patients rated the most harmful communication behaviors as  making vague promises (92%), not listening to the patient (88%), and discussing stopping anticancer therapy without mentioning alternatives (85%). Focusing on side effects of treatment was seen as least harmful (31%). There were wide discrepancies in patients’ perceptions of the potential harms of sharing information (too much or too little) and in whether the option of refraining from anticancer therapy should be discussed.

From the open-ended responses to the survey, the researchers learned that with respect to information provision, patients wanted acknowledgment of the emotional impact of providing information. Patients considered vague or false promises as harmful because of the uncertainty, they disliked medical jargon, and they wanted a balance between too much versus too little information. When discussing prognosis, patients’ opinions varied, with some wanting to avoid specific information because of the inherent uncertainty, whereas others disliked vague prognostic information.

In decision-making about treatment, some patients saw overly directive advice as harmful, whereas others preferred their oncologist to make suggestions. Preferences also varied about discussing stopping aggressive anticancer therapy. Some patients preferred not to discuss it, to maintain hope, whereas others thought it should be presented as an option. In either case, patients wanted their oncologist to discuss other approaches and not talk as though “nothing was left to be done.” Patients perceived a range of behaviors to be unempathetic. Helpful alternatives included exploring patients’ emotions, worries, complaints, psychological function, and unmet needs. “A patient should be seen as a person behind the disease,” the authors stressed.

Overall, this study showed that potential harm can be avoided if communication meets the patients’ need to know and understand, and their need to feel known and understood.  Lead author Jeanine Westendorp, MSc, and her colleagues stress the importance of exploring each individual patient’s needs and preferences, applying the key skills of asking and listening. They suggest that existing training courses like those offered by VitalTalk or the Serious Illness Conversation Guide may “offer a good starting point.”

The study has major implications for communication between nurses and patients. Because patients varied so widely in how they preferred to receive information, nurses and non-oncologic clinicians should work with patients to understand how they prefer to discuss issues related to decision-making, prognostic information, and emotions. Checking in with them regularly to seek their communication preferences can help ensure patient-centered care. Avoiding preventable communication that could harm patients can greatly improve patients’ and nurses’ therapeutic alliance, which facilitates better care for patients overall.