The frequent barriers to the discussion of goals of care and ACP present in the literature included lack of time, discomfort with difficult discussions, fear of affecting patients’ hope and emotional coping and lack of training in communication strategies about end-of-life5,10,11,12. In the present study, the “Decide-Oncology” questionnaire4 was used to evaluate the barriers on discussing goals of care. It classifies the barriers between: those of physicians, those of patients and families, and those of external barriers. Regarding the difficulties to discuss goals of care, most were related to patients’ and family members’ factors, such as the difficulty for patients to understand and accept their prognosis. These findings corroborate those of the Decide-study7 and Decide-Oncology study4, in which health-care professionals on general medical wards and physicians in oncology ambulatory identified patient and family related factors as the most important barriers to goals of care discussion. Some external factors such as the lack of time for these discussions was also considered a significant barrier in the present study, in agreement with the aforementioned authors4,7.
However, the physicians’ perception about the patient's difficulty to understand and accept his/her prognosis may reflect, at least in part, on the doctors' difficulty in predicting prognosis - a well-reported barrier in this study - and even with the well-established prognosis, they may have difficulties on communicating this prognosis in an objective and clear way4,7. It is important to consider that this study involved exclusively medical residents - who spend at least one month at oncology and/or palliative care services- unlike the DECIDE oncology study4, which included mostly oncologists, possibly with more experience than medical residents.
When comparing groups of residents by years of medical residency, 3rd and 4th year residents (generally on oncology, geriatric, hematology or palliative medicine residency) considered having more difficulties to discuss about goals of care related to the patients’ expectations regarding the benefits of therapy, and difficulties with the lack of time to have this conversation. In the field of oncology, communication skills are paramount, as the life-threatening or life-limiting nature of the conditions encountered in this field create multiple challenges for practitioners, both those in training and seasoned oncologists. The ability to communicate about a new diagnosis, poor prognosis, relapse, imminent death, or death itself is not innate, nor is it commonly taught at any level of training13. According to Perron et al (2015) the clinical experience alone is not enough; such skills should be taught and trained14. It could reflect the needs of continuous education in medical communication skills at postgraduate.
Physicians who deal with patients with serious illnesses need to have great communication’s skills. Clarifying cancer treatment goals and aligning expectations are essential to engage patients in timely and meaningful ACP15. It requires good illness understanding and realistic expectations about prognosis, so that patients can express their values and make decisions in a timely manner16. For example, data from the Cancer Care Outcomes Research and Surveillance (CanCORS) study showed that 69% of patients with stage IV lung and 81% of patients with stage IV colorectal cancers expected that chemotherapy would be curative15,17. In contrast, patients who understood that the role of chemotherapy was to reduce disease burden and control symptoms were more likely referred to appropriate hospice services and receive less aggressive care at the end-of-life18. Efforts to optimize communication are essential to effectively address gaps in illness understanding and moderate expectations for benefit, while preserving hope, empathy, and the therapeutic relationship between patients and their healthcare team19.
Granek (2013) explored oncologists’ views on end-of-life discussions and revealed various physician-related barriers to ACP, including personal discomfort with death and dying, reluctance to communicate painful information, perception of other physicians’ failure, focusing too much on a cure or treatment, along with a lack of experience with breaking bad news, especially in end-of-life care and lack of mentorship on training end-of-life communication strategies12. Regarding the discontinuation of directed cancer therapies, this study also found the discordance with other specialists in estimating prognosis/length of survival, followed by difficulty on estimating patient prognosis and uncertainty of the benefits of further active cancer therapy as important barriers. It is known that earlier follow-up by palliative care team could improve the communication with patients with incurable disease in helping them to prepare for the end of life, through shared decision-making among patients, their families, and healthcare providers20.
There is evidence that the use of chemotherapy near the end of life is not related to its likelihood of providing benefit. So, the suspension of aggressive treatment before the end of life is an indicator of good quality care, especially in the last two weeks of life21.This indicator is often difficult to capture but reflects the notion that optimal palliative care in the final weeks of life generally includes withdrawal of cancer aggressive and directed therapies, including withholding aggressive resuscitation measures22. This concept may be more difficult for patients to comprehend, as the mistaken notion of ongoing cancer treatment is often connected to maintaining good care and hope4. In the present study, medical residents indicated lack of access to palliative care services in the community and at hospitals, and lack of multidisciplinary teams (social workers, nurse practitioners, etc.) hindered patient support or referral process to palliative care, as well as the patient or family refusal of referral to palliative care, as opposed to the Decide-Oncology study4 that found patient and family desire to maintain hope as a significant barrier. It is worth mentioning that palliative care is not yet well integrated into public health in all regions of Brazil, unlike developed countries, where palliative care is well inserted and structured at different levels of health care.
Detering et al2 identified trained facilitators, patient centered discussions and systematic education of doctors, among other elements, as crucial to successful advance care planning. They also found that patients welcome ACP and expect health professionals to initiate this kind of discussion. Another recent systematic review found that healthcare professionals’ training in ACP had positive effects on their knowledge, attitude and skills about communication in end-of-life care23. The use of decision aids and advanced technology, such as audio-visual material and online tutorials; workshops using role play, training content focused on ACP communication skills and the needs and experience of patients in decision-make processes, contributing to ACP training programs effectiveness23,24,25. There are only few studies about communication skills designed for medical residents evaluated for their effectiveness26,27.They are not specific about advance care planning skills, although many of them provide the basis for this discussion28. Some authors demonstrated that communication skills training programs may improve residents’ breaking bad news skills with a positive change in their emotional reactions after training and minimizing insecurity to talk about challenging issues like prognosis23,26−29. In the present study, most of the residents self-reported an average skill level to discuss goals of care with their patients and also ranked it as high priority to learn those skills, although most of them already had a formal training regarding communication and goals of care discussion, which they classified as a moderately high-quality training. It is probably due to the fact that most of the residents are already at the third or fourth year of residency, in oncology-hematology or palliative care services at university hospitals, and deal with patients with advanced diseases frequently in their clinical practice.
Different tools may be more or less effective for clinicians with varying expertise and competency in end-of-life communication skills. Myers et al1 demonstrated in a systematic review the instruments that could facilitate the ACP process, like Respecting Choices30, a program with trained facilitators, and the Physician Orders for Life Sustaining Treatment (POLST) that is a standardized form containing medical orders that reflect a patient’s treatment preferences31. They demonstrated that exposure to these tools, and others, if compared to controls, could result in an increased advance directive completion; increased appointment of a surrogate; more involvement in end-of-life decisions; better consistency between patient wishes and medical interventions undertaken at end-of-life1,32,33. Most studies still present data from the point of view of healthcare providers and more research from the patients’ perspective is still needed1,23. Barriers related to patients and family members were the most reported in the present study, as well as in previous studies involving only health care professionals4,7.
In Brazil, a competency framework of palliative medicine for geriatricians’ residents was developed to guide the teaching of essential and desired skills of palliative care in geriatrics settings34. It includes communication’s skills such as: to explore the elderly patient and family's understanding of illnesses, concerns, goals and values and planning treatment that fits these priorities (advance care planning); to perform an effective patient-centered communication on breaking bad news or delivering prognostic information, in addition to adequately communicating to the patient on how to perform advance directives, based on bioethical and legal principles34. In other areas such as oncology, a competency framework would certainly help to standardize the skills and competencies of resident physicians. In our study, a great majority of residents described continuing education in palliative care and communication skills training as suggestions for improving shared decision-making about goals of care.
Given the lack of studies that address barriers to discussing goals of care, especially in the Brazilian reality, evaluating the difficulties from the perspectives of medical residents and their relative importance to discussing this topic are the strengths of this study. This study is the first step for the adaptation and validation of the Decide-oncology questionnaire to the Brazilian-Portuguese language. Nonetheless some limitations included a small sample, because it involved only medical residents from three university hospitals; due to this, it is possible that our findings may not be representative of all eligible respondents. Furthermore, a positive response bias among those who did participate is possible, with potential for higher response rates among those most engaged in palliative and end-of-life care.