In this study, the barriers to goals of care discussion and ACP most perceived by Brazilian oncologists were those mainly related to patients’ and families’ factors, such as the difficulty for patients and their families to understand and accept their prognosis and lack of an advanced directive. These findings were similar to the results from two Canadian multicenter studies [12, 14] that applied the Decide-Oncology instrument with the aim to perceive these barriers from the perspectives of physicians who assist cancer patients and also found patients and families’ difficulty accepting their prognosis/length of survival as the main difficulties to start the conversation about goals of care. A systematic review of ACP from the patients’ perspective showed that some of them reported initial resistance to participating in an ACP conversation because they fear being confronted with the life-threatening nature of their disease. Despite the initial resistance, most of the patients who completed the conversation were satisfied [18].

The results showed that physician-related barriers were the least frequently described as important. It is necessary to reflect on the perception of physicians about the most important barriers being patient-related, such as the difficulty of patients to understand and accept their prognosis, which can be related, at least in part, to the physicians’ difficulty in predicting and/or in communicating this prognosis in an assertive and clear way [2, 14, 19] since these physicians’ difficulties were also frequently described by oncologists in this study. Evidence also shows that feeling discomfort with goals of care discussion, fear of affecting patients’ hope and emotional coping and lack of training in communication strategies about end-of-life are some frequent difficulties reported by physicians, as well as lack of time to have the conversations [2, 11, 19, 20], which were also found in this study.

Regarding the discontinuation of directed cancer therapies, the patients’ barriers were also perceived as the most important by oncologists, in accordance with the findings of the Canadian studies [12, 14]. The desire of patients and their families to maintain all kinds of therapies, even those considered futile, could be related to the notion that ongoing cancer treatment is often connected with hope [12, 21]. This may reflect gaps in patient knowledge regarding the limitations and potential harms of cancer therapies at the end of life, as well as deficiencies in physicians’ ability to effectively communicate about prognostics [14]. It is known that early follow-up by palliative care could improve the communication with patients with advanced diseases in helping them to prepare for the end of life through shared decision-making among patients, their families and healthcare providers [22].

The lack of palliative care and multidisciplinary teams aligned with the care of cancer patients are common difficulties perceived by the participants who had formal training on goals of care and who had worked at palliative care services. The insufficient health support (social workers, nurse practitioners, psychologists, etc.) integrating teams to aid in the patient referral process to palliative care is still a common reality in hospitals, especially those without specialised palliative care services, which hinders these patients’ access to the necessary integrated care [23]. Also, the lack of patients’ advanced directives was one of the main barriers denoted by the aforementioned groups. In Brazil, there are still low rates of advanced directive records, and it is still very little discussed by healthcare professionals since many are unaware of this instrument and that it could facilitate the decision-making process about goals of care at the end of life [24, 25, 26, 27]. Professionals who work in palliative care teams tend to perform more advance directives with their patients, and therefore, they may be more sensitive to the importance of this instrument for decision-making and the impact of the lack of patient advance directives. A systematic review shows that structured communication tools may increase the frequency of discussions about and completion of advanced directives and the consistency between the care desired and the care being provided to patients with advanced disease [28]. Training health professionals through communication skills courses is a promising approach to changing communication behaviour and attitudes [29]. Continuous education about this issue from medical graduation until the course of medical practice is likely to improve this scenario [5, 29, 30].

In this study, the oncologists were asked about strategies that, in their experience, could facilitate the discussion with patients about goals of care. The intrinsic factors were the most underlined in this qualitative analysis, like to know how to talk about prognostics earlier to deal with emotional aspects while discussing goals of care and ACP with their patients, and having continuous education in communication skills and palliative care. Granek et al. (31), in a Canadian qualitative study about communication in end of life, found some similar oncologists’ strategies, such: being open and honest with patient; having ongoing, early conversations; communicating about modifying treatment goals; and balancing hope and reality. Schulman-Green et al. [19] explored American oncologists’ perceptions about goals of care communication in a qualitative study and described as important facilitators for the discussion of goals of care the oncologist’s practice experience and a supportive practice environment. In our study, the oncologists reported a median of 11.5 years in practice. Furthermore, most participants had received training on goals of care communication, which had a significant positive impact on the willingness to participate in the decision-making process about goals of care, compared with those who did not have this training, even though most of the participants did not consider their level of training high on this topic, which could contribute to the perception of the difficulties even among those with training.

There is a lack of studies that address barriers to discussing goals of care and ACP, especially in the Brazilian reality. Given the current challenges society is facing, such as the growing ageing population and the increase in chronic diseases, the implementation of ACP and the discussion of goals of care are imperative for humanised care [7, 19, 23]. This study allows understanding of the difficulties perceived by the oncologists in discussing ACP and goals of care with their patients from both a quantitative and qualitative perspective, enabling the future development of strategies to surpass them.

Limitations of this study include a small sample – there was a reduced response rate. Given that data collection occurred during the pandemic period by a coronavirus, most healthcare professionals were mentally and physically overwhelmed and overburdened. Further issue that may have contributed to the lower response rate was the vulnerable nature of this topic. This may be related to a selection bias, since not everyone feels comfortable talking about this issue. Another limitation was that not all participants answered the open questions considered for qualitative analysis. This may reflect the difficulty/interest of the participants in describing strategies to minimize barriers to discussing goals of care. Nevertheless, this study comprises oncologists from all regions of Brazil, which allow us to have an overview of the national reality. Moreover, differently from the previous studies, the results have been further analyzed according to the presence of any formal communication training or working experience at the palliative care, instead of comparing only according to years of medical experience.