BackgroundCommunication and shared decision-making (SDM) are essential to patient-centered care. Hospital-based palliative care with patients with limited health literacy (LHL) poses particular demands on communication. In this context, patients' emotions and vulnerable condition impact their skills to obtain, understand, process and apply information about health and healthcare even more. If healthcare providers (HCPs) meet these demands, it could enhance communication. In this study, HCPs were interviewed and asked for their strategies, barriers and suggestions for improvement regarding communication and SDM with LHL patients in hospital-based palliative care. MethodsA qualitative interview study was conducted in 2018 in four Dutch hospitals with 17 HCPs-11 physicians and 6 nurses. Transcripts were analyzed using thematic analysis.

Background Person-centred palliative care poses high demands on professionals and patients regarding appropriate and effective communication and informed decision-making. This is even more so for patients with limited health literacy, as they lack the necessary skills to find, understand and apply information about their health and healthcare. Recognizing patients with limited health literacy and adapting the communication, information provision and decision-making process to their skills and needs is essential to achieve desired person-centred palliative care. The aim of this study is to summarize available strategies and tools for healthcare providers towards successful communication, information provision and/or shared decision-making in supporting patients with limited health literacy in hospital-based palliative care in Western countries. Methods A scoping review was conducted. First, databases PubMed, Embase, CINAHL, and PsycINFO were searched. Next, grey literature was examined using several online databases and by contacting national experts. In addition, all references of included studies were checked. Results Five studies were included that showed that there are face-to-face, written as well as online strategies available for healthcare providers to support communication, information provision and, to a lesser extent, (shared) decision-making in palliative care for patients with limited health literacy. Strategies that were mentioned several times were: teach-back method, jargon-free communication and developing and testing materials with patients with limited health literacy, among others. Two supporting tools were found: patient decision aids and question prompt lists. Conclusions To guarantee high quality person-centred palliative care, the role of health literacy should be considered. Although there are several strategies available for healthcare providers to facilitate such communication, only few tools are offered. Moreover, the strategies and tools appear not specific for the setting of palliative care, but seem helpful for providers to support the communication, information provision and decision making with patients with limited health literacy in general. Future research should focus on which strategies or tools are (most) effective in supporting patients with limited health literacy in palliative care, and the implementation of these strategies and tools in practice. Electronic supplementary material The online version of this article (10.1186/s12904-019-0421-x) contains supplementary material, which is available to authorized users.

Introduction. An important goal of palliative care is improving the quality of life of patients and their partners/families. To attain this goal, requirements and preferences of patients need to be discussed, preferably through shared decision making (SDM). This enhances patient autonomy and patient-centeredness, requiring active participation by patients. This is demanding for palliative patients, and even more so for patients with limited health literacy (LHL). This study aimed to examine SDM in practice and assess health care professionals’ perspectives on their own SDM. Methods. An explanatory sequential mixed methods design was used. Video recordings were gathered cross-sectionally of palliative care consultations with LHL patients ( n = 36) conducted by specialized palliative care clinicians and professionals integrating a palliative approach. The consultations were observed for SDM using the OPTION5 instrument. Potential determinants of SDM were examined using multilevel analysis. Sequentially, stimulated recall interviews were conducted assessing the perspectives of professionals on their SDM ( n = 19). Interviews were examined using deductive thematic content analysis. Results. The average SDM score in practice was moderate, varying greatly between professionals, as shown by the multilevel analysis and by varying degrees of perceived patient involvement in SDM mentioned in the interviews. To improve this, professionals recommended 1) continuously discussing all options with patients, 2) allowing time for patients to talk, and 3) using strategic timing for involving patients in SDM. Discussion. The implementation of SDM for people with LHL in palliative care varies in quality and needs improvement. SDM needs to be enhanced in this care domain because decisions are complex and demanding for LHL patients. Future research is needed that focuses on supporting strategies for comprehensible SDM, best practices, and organizational adaptations.

Background Patients have a ‘need to know’ (instrumental need) and a ‘need to feel known’ (affective need). During consultations with patients with limited health literacy (LHL) in the palliative phase of their disease, both the instrumental and the affective communication skills of healthcare providers are important. The study aims to explore instrumental and affective communication between care providers and LHL patients in the palliative phase of COPD or cancer. Methods In 2018, consultations between LHL patients in the palliative phase of cancer or COPD and their healthcare providers were video-recorded in four hospitals in the Netherlands. As there was no observation algorithm available for this setting, several items were created to parameterize healthcare providers’ instrumental communication (seven items: understanding, patient priorities, medical status, treatment options, treatment consequences, prognosis, and information about emotional distress) and affective communication (six items: hope, support, reassurance, empathy, appreciation, and emotional coping). The degree of each item was recorded for each consultation, with relevant segments of the observation selected and transcribed to support the items. Results Consultations between 17 care providers and 39 patients were video-recorded and analyzed. Care providers primarily used instrumental communication, most often by giving information about treatment options and assessing patients’ care priorities. Care providers assessed patients’ understanding of their disease less often. The patients’ prognosis was not mentioned in half the consultations. Within the affective domain, the care providers did provide support for their patients; providing hope, reassurance, empathy, and appreciation and discussing emotional coping were observed less often. Conclusions Care providers used mostly instrumental communication, especially treatment information, in consultations with LHL patients in the palliative phase of cancer or COPD. Most care providers did not check if the patient understood the information, which is rather crucial, especially given patients’ limited level of health literacy. Healthcare providers did provide support for patients, but other expressions of affective communication by care providers were less common. To adapt the communication to LHL patients in palliative care, care providers could be less wordy and reduce the amount of information, use ‘teach-back’ techniques and pay more attention to affective communication.

With an increasingly ageing population there will be a rising demand for palliative care, including from older migrants and ethnic minorities. While many (future) physicians are unfamiliar with specific needs of older migrants and ethnic minorities regarding care and communication in palliative care, this may be challenging for them to deal with. Moreover, even many medical teachers also feel unprepared to teach palliative care and culturally sensitive communication to students. In order to support medical teachers, we suggest twelve tips to teach culturally sensitive palliative care to guide the development and implementation of teaching this topic to medical students. Drawn from literature and our own experiences as teachers, these twelve tips provide practical guidance to both teachers and curriculum designers when designing and implementing education about culturally sensitive palliative care.