Communication with Limited Health Literacy Cancer Patients: There's Room for Improvement

Cancer patients in palliative care with limited health literacy (LHL) may not be receiving an adequate explanation of their disease from their provider, according to a report about communication.

The study evaluated the use of two types of communication—instrumental and affective—in the context of care providers speaking with cancer and chronic obstructive pulmonary disease (COPD) patients with LHL in the palliative phase of their care.

Instrumental and affective communication serve two different patient needs: their need to know and understand (instrumental), and their need to feel known and understood (affective). While instrumental communication focuses on giving patients information, affective communication focuses more on the emotional side of the conversation. Communicating with LHL patients adds an additional layer of complexity to the healthcare provider’s (HCP) job.

To evaluate how these two communication styles play out in practice, researchers videoed encounters between providers and LHL patients that took place in four hospitals in the Netherlands.

Seven items were identified to represent instrumental communication:

• Understanding
• Patient priorities
• Medical status
• Treatment options
• Treatment consequences
• Prognosis
• Information about emotional distress

Six items were identified to represent affective communication:

• Hope
• Support
• Reassurance
• Empathy
• Appreciation
• Emotional coping

The final analysis encompassed interactions between 17 care providers and 39 patients. Ten providers were male, and seven were female. Most providers were physicians (n=10); the others were nurses (n=6) or physicians in training (n=1). There was one HCP present in most consultations, and in two consultations, two HCPs were present. There were six consultations in which a physician in training was present but did not engage in the discussion.

Among the 39 patients, 21 were male and 19 were female. Thirty-three included the patient and another party, such as a partner (n=20), a son or daughter (n=9), or someone else (n=4). A significant proportion of patients had a low level of education (n=31); six and two patients had medium and high level education, respectively, and for one patient, the education level could not be determined. There were seven patients who did not claim to be LHL but who the HCP determined to be. Most of the cohort was cancer patients (n=26); 13 had COPD, and one had an anomaly of the lung.

Consultations lasted for an average (range) 22.53 (5.57–69.58) minutes. Care providers had a tendency to use instrumental communication, the researchers observed. In 25 consultations, the provider did not assess the patients’ understanding of their disease; in 10 of the remaining consultations, it was only assessed one time. This, of all the instrumental communication aspects, was brought up the least. In half of consultations, the providers did not talk about the patients’ prognosis. When assessing affective communication, support was provided, but hope, reassurance, empathy, appreciation, and a discussion about emotional coping were not as common.

The study was published in BMC Palliative Care.

“Most HCPs did not check if the patient understood the information, which is rather crucial, especially given patients’ limited level of health literacy. HCPs did support the patients but other forms of affective communication by HCPs were less common. To adapt the communication to LHL patients in palliative care, HCPs could reduce their wordiness and simplify their language, reduce the amount of information, use the teach-back technique and pay attention to affective communication,” the researchers recommended in their conclusion.