Talk less, care more for patients with limited health literacy in the palliative phase of their disease

In the Netherlands, 29% of the population has limited health literacy (LHL). Patients with LHL have difficulty understanding healthcare information, applying this information to their situation, and asking questions about their disease. In their communication with patient with LHL, HCPs appear to act mainly in an instrumental way, especially by providing medical information. This is one of the outcomes of a study by Nivel, which is recently published in the scientific journal BMC Palliative Care.

Most HCPs do not check if the patient understands the information, which is rather crucial, especially given patients’ limited level of health literacy. HCPs do provide support for patients, but other affective utterances are less common. Due to the burden of the disease and concomitant emotions, communication with LHL patients in the palliative phase of their disease places additional demands on the communication skills of their health care providers (HCPs).

Checking patients understanding of the instrumental communication
In this study it was found that HCPs primarily use instrumental communication in their consultations with LHL patients in the palliative phase of their disease. Information about medical status and treatment was given most often, as well as assessing patients’ care priorities. Most HCPs did not check patients’ understanding and did not use teach-back techniques, in asking the patient to repeat what has been discussed. This however is rather crucial, especially given patients’ limited level of health literacy.

Using more affective communication
Affective communication was found less often than instrumental communication. Most of the HCPs did use supportive words in their communication, but other affective communication (providing hope, reassurance, empathy, appreciation, or discussing emotional coping) was observed less often.  We know from previous studies that HCPs’ empathy helps LHL patients to understand preoperative information better. Therefore the improvement of empathic communication should get priority, especially for LHL patients.

Wordiness: too much and too difficult information
Furthermore, we observed that the HCPs usually provided too much information and used difficult words and lengthy sentences that were not adapted to LHL patients. This ‘wordiness’ (using more and more difficult words than actually needed) could cause misunderstanding in the patients. It is known that LHL patients can, on average, remember a maximum of three subjects per consultation. In contrast, we were pleased to find that HCPs assessed patients’ priorities in the majority of the consultations. This indicates that HCPs take account of the wishes and circumstances of the patient.

Recommendations
To adapt the communication to LHL patients in palliative care, we suggest HCPs to be less wordy and reduce their amount of information, use ‘teach-back’ techniques and pay more attention to affective communication.

About the study
In this Nivel-study a new observation protocol was created to analyse instrumental and affective communication. Seven items in instrumental communications are analysed: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress. In affective communication six items are analysed: hope, support, reassurance, empathy, appreciation, and emotional coping). Video-recorded consultations (n=40) between LHL patients in the palliative phase of cancer or COPD were observed with this new observation algorithm. The outpatient consultations were recorded in 2018 in four hospitals in the Netherlands.

This research project is part of the Nivel research program Communication in Healthcare (lead by prof. Sandra van Dulmen, PhD).