Introduction to communication in cancer care in Europe and EU policy initiatives
Communication in cancer settings is an extremely significant component of person-centred care. This is particularly so for the doctor–patient relationship when exchanging information about diagnosis, prognosis, and treatment-related decisions across the trajectory of the disease. With respect to this, it is clearly demonstrated that cultural and social factors have a specific role in influencing communication in oncology (Butow and Baile 2012). It is a fact that culture moulds both the patients’ and communities’ attitudes towards cancer care health professionals, institutions, cognitive, emotional, and behavioural responses to cancer and cancer treatment, as well as the patient’s attitudes towards illness and suffering, decisions about treatment, and the whole organization of care (Surbone 2012). For these reasons, identification and negotiation of different styles of communication, decision-making preferences, roles of family, gender issues, and issues of mistrust, prejudice, and racism, becomes a significant component of clinical activity and a major challenge for oncologists practicing in Europe where significant cultural differences exist.
In this chapter we will present some of the main aspects of communication, taking into account the cultural differences between northern and southern European countries and the multiculturalism determined by the recent immigration phenomena in Europe. Also this chapter will discuss the main initiatives promoted over the last 10 years by European institutions regarding communication skills training in cancer care.
Communication issues and cultural aspects in European countries
Differences between northern and southern European countries
Several studies have shown significant differences in communication styles between healthcare professionals and cancer patients, according to geographical parts of Europe. The main finding suggests northern European countries (e.g. Scandinavian countries, United Kingdom, Germany) traditionally follow the tendency to openly communicate with cancer patients and their families with an attempt to create a shared decision-making process with regard to treatment. In contrast, Southern Europe communication styles around a cancer diagnosis, treatment, and prognosis has been more problematic. For example, paternalistic attitudes by physicians is common and is seen as an attempt to minimize the amount of medical information given to their patients so as to protect them (‘the less you know, the less you worry’). A second reason is related to the different characteristics of the family. For example, southern European countries have been characterized as being more family-centred (extended families) than northern European countries. The repercussion of this in cancer settings is reflected in a marked tendency of southern European families to need to protect their relatives and to play a role in decision-making when dealing with medical illnesses. In Italy, for example, it was common in the 1980–1990s, to not tell cancer patients all of the facts about their clinical situation. More recently, because of the research, a shift has taken place indicating that the percentage of cancer patients who are informed and aware of their diagnosis has increased, with the majority of cancer patients correctly being informed of their diagnosis. However, even today about half of cancer patients are still not aware of their prognosis, with challenges existing in how to balance the exchange of information between patients and the families. This is even more apparent in situations where patients have been diagnosed and are being treated in advanced phases of their cancer. In a recent multicentre study, 87% of the patients were aware of their diagnosis, while 49% of those with metastatic cancer thought they were curable (Costantini et al. 2015). Similar findings have been shown in Portugal, where about 70% of cancer patients know the extent of their diagnosis, but in palliative care settings, only one-third of doctors tend to disclose the extent of the cancer diagnosis out of a concern that too much information might ‘damage the patients psychologically’ (Travado 2013).
Multiculturalism in Europe
Because of the large-scale immigration, a new challenge is developing in Europe. The incidence of cancer in this immigrant population and the consequent treatment needs will likely present new communication challenges. In the last 30 years, communication training and research has focused attention on the impact of cultural diversity and multiculturalism in clinical settings. In particular, research has addressed the impact of racial and ethnic minorities where health disparities are related to socioeconomic disadvantage and the difficulty of integrating their cultural model into the dominant model (Kagawa-Singer et al. 2010). The different cultural representations of illness and suffering (including language, thoughts, communications, actions, customs, beliefs, values, race, ethnicity, and religion) influence the whole of oncology care, from communication of diagnosis to decisions about treatment, from physical and psychological assessment to end-of-life care.
Several studies in recent years have been carried out by examining the differences related to the interpretation of cancer and cancer treatment according to culture. Research about the need to consider cultural backgrounds of different populations (e.g. African, Asian) in communication and psychosocial assessment is increasingly being presented. We are beginning to see the way cultural norms are influencing the way patients express their needs physically and emotionally to physicians, or to challenge physicians when their needs are not met (Grassi et al. 2015a). Therefore, psychological concerns related to worry about children and burdening the family, body image and sexual health concerns, beliefs about illness, gender roles, family obligations (e.g. self-sacrifice), as well as language barriers should be monitored when assessing patients from different cultural groups.
Several variables related to physicians’ personalities and individual characteristics are also important in communication in cancer settings. In a southern European study, low psychosocial orientation and burnout symptoms (i.e. emotional exhaustion, depersonalization, and poor personal accomplishment in their job) were found to be associated with lower confidence in communication skills and higher expectations of a negative outcomes (Travado et al. 2005). As a consequence, physicians’ burnout and stress negatively influences empathy and the capacity to give reassurance. Thus communication performance in the patient consultation is negatively affected. In fact, not only is the amount of information, but how communication occurs is extremely important in oncology. Having an ‘empathic professional’ is preferred by cancer patients than having a ‘distanced expert’. Thus, ‘affective’ communication, in addition to ‘effective’ communication, should be the standard in cancer settings. In line with this, a European study showed that perceiving a physician as supportive, and interested in all aspects of the person, including emotional issues, has been associated with cancer patients’ lower level of distress and better adjustment. In contrast, physician disengagement is associated with hopelessness and higher distress (Meggiolaro et al. 2015). Specific attitudes, behaviours and skills (e.g. capacity to impart confidence, being empathic, providing a ‘human touch’, relating on a personal level, being forthright, being respectful, and being thorough) are necessary components for effective/affective communication in cancer care, and in severe medical conditions (Grassi et al. 2015b).
Communication skills training experiences in Europe
Given these differences between northern and southern European countries, training in communication has become a priority in Europe, with cancer care health professionals asking for help in improving their communication and relational skills with their patients and families.
Several training models on communication skills (CSTs) have been developed for European countries, with the objective to develop better strategies in communicating with seriously ill patients and their families. The seminal work of Peter Maguire and colleagues has had a profound impact in CST literature in oncology. Their model is based on the role that knowledge and skill deficits, self-efficacy, outcome expectancy beliefs, and perceived support plays in the ability and willingness of health professionals to assess their patients’ concerns. The model has been applied to guide the development of a revised approach to brief and problem-focused workshops (Maguire and Faulkner 1994). Leslie Fallowfield and her team (Fallowfield and Jenkins 2006) also carried out a series of significant investigations, pointing out the impact of CST in improving the relationship between oncologists and cancer patients. As a result, several studies showed significant changes in oncologists’ communication skills training programmes. This led to positive shifts in attitude towards patients’ psychosocial needs and a more patient-centred care. CSTs using behavioural, cognitive, and affective strategies not only make the interviewing style more effective, but also have been observed to alter attitudes and beliefs of healthcare providers. This increases the likelihood that such skills can be transferred to the clinical setting. The use of focused and open questions, expressions of empathy, and appropriate responses to patients’ cues are significantly increased after CSTs, with enduring effect and high likelihood of integration of key communication skills into clinical practice. Also CSTs significantly improve team awareness, knowledge of teams’ clinical trials portfolios and clarity about clinical trial(s) to be conducted in oncology settings (Jenkins et al. 2010).
Interesting and clinically significant changes and adaptations have also been made according to the country and the relative cultural derived factors. In Francophone speaking countries, such as Belgium, significant results were obtained by Darius Razavi and his team (Merckaert et al. 2005) in the last 20 years. Razavi’s CST model involves cognitive (e.g. theoretical information), experiential (e.g. case-history discussions), behavioural (e.g. role playing exercise), and supportive (e.g. stressor identification) techniques as key components for good communication skills. Several studies have shown that CST has had significant effects on attitudes including self-concept and the level of occupational stress of healthcare providers. In more recent studies, CST has been shown to facilitate transfer of team-member learned communication skills to clinical practice and improved patients’ satisfaction with care (see Chapter 59 ‘The Belgian experience in communication skills training’ and Chapter 17 ‘Communicating with relatives in cancer care’ for more details). Therefore, in the experience of the authors, a core curriculum on CST is mandatory in cancer settings and junior and senior oncologists, as well as other healthcare professionals (e.g. nurses should participate in CST).
In southern European countries, some CST models such as SPIKES have been adapted and modified to fit with the Mediterranean cultural context. In this regard, a specific educational and experiential model (12 hours divided into two modules) involving formal teaching (e.g. journal articles, large group presentations), practice in small groups (e.g. small group exercises and role playing), and discussion in large groups was developed in southern European countries, namely Italy, Portugal, and Spain (Southern European Psycho-Oncology Study—SEPOS). The objective in this case was to improve the ability of oncologists to detect emotional disturbances in cancer patients (e.g. depression, anxiety, and adjustment disorders) (Grassi et al. 2005). Data have shown that the training course was well-accepted by most participants, who expressed general satisfaction and a positive subjective perception of the utility of the course for clinical practice. Other specific experiences have been developed in Italy by Costantini, Grassi, and Baile, who adapted the SPIKES-Oncotalk model and set up a CST which included formal lectures, small group work, role play, and interviews with simulated patients. Preliminary studies showed that these CSTs were effective in improving self-efficacy, knowledge of communication skills, favourable changes in attitudes towards disclosure of medical information, and assessing patients’ concerns and fears (Costantini et al. 2009; Lenzi et al. 2011). Other initiatives were also developed in Portugal, namely a pilot training programme at National level conducted under the Portuguese National Cancer Control Programme for cancer physicians (Travado 2013). This programme adapted the SEPOS model tested in Portugal and introduced a new module on ‘communicating bad news’. A two-DVD set on ‘Communication and Relationship Skills for Health Professionals’ (Reis and Travado 2006), providing illustrative teaching material on basic and advanced communication techniques and how to break bad news to patients using SPIKES protocol, was used both as a workshop supportive tool and for self-learning. The results of this programme showed significant improvements (p <0.001) in communication skills after the workshop; the participants rated it as very useful for their clinical practice, confirming its relevance for physicians’ training (Travado 2013).
In a consensus meeting, based on European experts’ opinions, a series of key components necessary for CST communication training programmes in European countries have been proposed (Stiefel et al. 2010) (Box 60.1). The improvement of cultural competence for multicultural settings in cancer settings has also become a necessity in Europe. Cultural (and linguistic) competence implies having the capacity to function effectively within the context of the cultural beliefs, behaviours, and needs presented by patients from different countries. As well, the flexibility of being able to make a major shift in communication framework is seen as essential (Surbone 2013). With respect to this, it has been indicated that healthcare professionals should be trained in developing programmes that include a cultural and diversity sensitivity for staff, reflecting the communities being served (Box 60.2) (Teal and Street 2009).
Text extracts reproduced from Stiefel F et al., ‘Communication skills training in oncology: a position paper based on a consensus meeting among European experts in 2009,’ Annals of Oncology, Volume 21, Issue 2, pp. 204–7, Copyright © 2010, by permission of Oxford University Press.
Adapted from Social Science and Medicine, Volume 68, Issue 3, ‘Critical elements of culturally competent communication in the medical encounter: a review and model,’ pp. 533–543, Copyright © 2008 Elsevier Ltd, with permission from Elsevier, http://www.sciencedirect.com/science/journal/02779536
European Union policy initiatives in communication in oncology
Communication skills training in oncology is seen as a fundamental aspect of comprehensive and high-quality cancer care. The endorsement by cancer patients’ organizations, and political institutions, is a definite sign that communication skills training is being embraced. The European Cancer Patient Coalition (http://www.ecpc.org) is in fact an example of an organization that has been very active in lobbying within the European Parliament to focus attention to cancer patients’ needs and policies in Europe. The importance of a multidisciplinary and integrated approach in cancer care has also embraced the inclusion of psychological variables and related-communication issues. As a result, a number of initiatives have taken place under the umbrella of the Portuguese and Slovenian EU Presidencies (Gouveia et al. 2008; Coleman et al. 2008). The important role of psychosocial oncology in cancer care and communication skills training (Grassi and Travado 2008), were recognized. A Resolution document on reducing the burden of cancer in Europe was signed by all the European Member States (EPSCO Council 2008), which has resulted in the development of a cancer control and care action plan by the European Partnership for Action Against Cancer (EPAAC: www.epaac.eu). The main aim of the partnership is for all European Member States to have integrated cancer plans to reduce cancer by 15% in 2020. Within this framework, two important deliverables gave special visibility to psychosocial oncology and CST: (i) the publication of the European Guide for Quality National Cancer Control Programmes, included Psychosocial Oncology Care as an important area for cancer care and service planning in integrated cancer care, highlighting the need for healthcare professionals to undergo CST (Travado and Dalmas 2015); and (ii) the Psychosocial Oncology Action Plan (http://www.epaac.eu/healthcare) with the main aim to implement a training strategy to improve psychosocial care and communication skills among healthcare providers in Europe (Travado and Borras 2013), as a way to foster and improve psychosocial cancer care.
More specifically the Psychosocial Oncology Action Plan conducted a mapping of needs and resources in communication skills and psychosocial oncology care (PSOC) in European countries (Travado and Borras 2013), and developed an educational training tool in these areas including CST. This was successfully piloted in Romania. This action was a breakthrough in European mainstream cancer care and it was carried out with the support of the International Psycho-Oncology Society (IPOS), among other European partners (http://www.epaac.eu/healthcare).
Preliminary data from the mapping of needs and resources in communication skills and psychosocial care in Europe from the Psychosocial Oncology Action Plan under the healthcare work-package (WP7) of the European Partnership on Action Against Cancer is available elsewhere (Travado and Borras 2013; Travado et al. 2015). In summary, of the 27 European countries in the study, nine (33%) referred to having CST for healthcare professionals, and 17 countries (63%) reported providing CST during medical education. In terms of training priorities, CST for doctors and nurses was referred to as important by 18 countries (67%).
All these initiatives are extremely significant, but more resources and energy should be dedicated to improving the effectiveness in communication in healthcare providers.
The differences in cultural backgrounds among European countries and the more recent changes due to immigration phenomena in Europe strongly indicate that cultural issues should be taken into account regarding communication skills training in the cancer settings.
A patient and family-centred approach becomes essential so that cultural values and beliefs of the patient and the family are incorporated in the therapeutic relationship with healthcare providers.
Thus, as a practical consequence, it is mandatory in Europe to develop specific CSTs for oncology healthcare professionals, by considering both the ‘traditional culturalism’ between European countries (the historically and culturally-based difference between Latin and Anglo-Saxon cultures) and multiculturalism (the existence, acceptance, or promotion of multiple cultural traditions in European countries due to immigration from non-European countries). However, although we have witnessed progress in Europe in the last decade concerning CST inclusion in formal and continuing medical education, communication skills training is not yet a part of the core curriculum, nor is this training mandatory. Continuous efforts are still needed at academic and policy levels to make CST mandatory as a recognized core-competence for clinical practice in the healthcare professions. In a rapidly changing globalized and post-modern Europe, it will be important to monitor how language and cultural sensitivity imbedded in communication skills training will impact cancer care.
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