INTRODUCTION

Teaching physicians how to deliver bad news (BN) has become an essential part of medical formation, in view of its frequency in clinical practice and importance for the patient and physician¹. BN is defined as any news that negatively affects a person’s view of their future². Consequently, the one who determines whether the news is bad is the person who receives it and not the physician. Although receiving a diagnosis of cancer has a negative impact on a person’s view of their future, a variety of other news, such as a diagnosis of diabetes mellitus, neurodegenerative diseases, the need to undergo surgery, or performance limitation due to injuries may also be perceived as BN, depending on patients’ previous experience and expectations³. Recently, the SARS-CoV-2 (Covid-19) pandemic, with the necessary isolation, has challenged physicians regarding how to deliver BN to patients and families⁴.

In order to prepare medical students and physicians for this task, the teaching has combined theory and practice⁵, generally based on frameworks that systematize the key steps of BN delivery^{6)- (8}. Studies on the effects of interventions have included outcome measures such as the participants’ subjective aspects (satisfaction, self-confidence, and comfort), ⁽⁹ knowledge, performance in Objective Structured Clinical Examination (OSCE) rated by observers, standardized patients^{10)- (16)} and/or analogue patients,¹⁷ as well as performance in recorded consultations with real patients in relation to the patients’ distress, satisfaction with the consultation, and trust in the physician¹⁸. Nevertheless, the most effective way to teach and learn utilizing simulated patients in medical education is still unknown¹⁹. A meta-analysis including 17 articles on interventions involving medical students, residents, and/or physicians demonstrated large improvement in the participants’ performance in the OSCE and moderate improvement in self-confidence¹⁵. The authors suggested further studies to evaluate the effects of interventions in clinical practice with real patients, which has also been highlighted by other authors^{16)- (20}. One outcome measure should be the patients’ perception on how they received BN.

Nowadays, “most of the research into the delivery of BN has focused on patients with cancer and subsequently, applied to the delivery of bad or serious news in non-oncologic settings” ⁽²¹. Recommendations on how to deliver BN were based on empirical evidence and expert opinions, with little patient-based evidence until 2001,^22),(23 when studies investigating the preferences of patients with cancer for receiving BN began to increase. A systematic review on patients’ preferences for receiving BN showed that patients wanted physicians to communicate BN clearly and honestly, using words that they could understand and providing written explanation as needed. They preferred to receive information on whether their illness was cancer, details about the disease, treatment options, chance of a cure, and impacts of treatment on their activities of daily living. Also, patients wanted physicians to show empathy for them and their families, as well as to be hopeful and supportive. The authors emphasized that physicians should tailor their communication to each patient, considering their perspective²³. The instruments to assess preferences included the Information Needs/Information Styles Questionnaire²⁵ and the Measure of Patients’ Preferences (MPP), based on a literature review and expert opinion and validated for patients with cancer^22),(24. A study applying the SPIKES protocol to assess the perspective of patients with other life-changing diagnoses was carried out by Mirza et al (2018), and it showed that the protocol largely reflected the preferences of these patients. The authors also suggested additional components, such as assessing the patient’s understanding²⁵.

The recommendations for delivery of BN are divided into steps with tasks and behaviors suitable for the participants’ training and assessment by trained observers or standardized patients. However, patients in real clinical scenarios may evaluate communication differently, and instruments for assessing how they received BN are necessary. Delivery of BN is difficult to evaluate, and there is little evidence of assessment of this process; therefore, instruments are needed to measure it, mainly in clinical settings²⁶.

Aiming to create a literature-based instrument for patients’ assessment of how doctors delivered BN, we developed a questionnaire consisting of 37 items based on the protocols to guide BN delivery. After the assessment of clarity, relevance, and semantics by a committee of judges, the number of items was reduced to 20. This instrument was applied to 20 patients in a pilot study. However, many of the patients could not understand or remember the instrument items, and we realized that patients assessed the delivery of BN in a more holistic way, not paying much attention to the protocol steps, which were developed to guide the physicians’ practice and training. Thus, we realized that it was necessary to identify, together with the patients, using their own language, what they considered important for the process of delivering BN. Therefore, the aim of this study was to develop an instrument to assess how physicians deliver BN in clinical practice, based on the patients’ perspectives.

METHOD

We used an exploratory qualitative approach and followed the Consensus-based Standards for the Selection of Health Measurement Instruments (COSMIN)²⁷. Approval was obtained from the institutional review board (number 78418417.0.0000.0121). All subjects who agreed to participate signed the free and informed consent form.

RESULTS

DISCUSSION

We developed an instrument to assess how physicians deliver BN, consisting of 16 items based on the perception of real patients. One aspect frequently mentioned by the patients was honesty. In the interviews, we observed that most patients expected to be told the truth. Some patients expected the doctor to discern and determine the appropriate time and how much to say, considering each patient’s individual situation. In contrast, other patients preferred physicians to communicate with the family first. These findings are consistent with those of another study, which also identified differences in patients’ preferences for truth-telling³¹⁾ and in the MPP instrument, whose items include aspects such as honesty in the transmission of information (“doctor is honest about the severity of my condition”) and considering a family member as a recipient of the news²².

The participants stressed the importance of the presence of a person trusted by the patient at the time of BN delivery. This aspect is mentioned in the ABCDE protocol (“arrange for the presence of a support person and appropriate family”)⁷ and in the MMP instrument (“having a doctor inform my family members about my diagnosis”), which mentions the presence of family at the time of delivering the news²².

Clearly understanding “what the patient knows” about their health problem before delivering the news is recommended in some protocols^6),(8),(32. We speculate that this was not mentioned by our patients because, although it is an aspect of the interview that facilitates communication for the doctor, patients may not perceive it as essential. However, we believe that it was important to include this item in our instrument, because it helps to introduce the subject and maintain a dialogue with the patient, and because it was strongly recommended in other protocols.

Regarding whether or not the doctor should prepare the patient before delivering the news, we found divergent opinions. Some patients prefer that the doctor go “straight to the point”, while others prefer that physicians “speak slowly or give tips until they notice it”. This difference might be due to cultural factors, as well as differences in educational background, gender, and age, as reported by other authors^{24), (33), (34}. With respect to the delivery of the information itself, clear and simple language was mentioned, and the item “used words that I could understand” reflects the patients’ preference in this regard. Makoul et al., in their Communication Assessment Tool to measure physician communication skills developed from the patients’ point of view, also demonstrated the importance of clear language (“talked in terms I could understand”) ⁽³⁵. However, the item related to language initially proposed in the MMP instrument (“giving information in simple, clear, language”) was eventually removed from the final version after validation²².

The physician’s attitude during BN delivery appeared as an important part of the construct and was represented in some items of our instrument, such as […] “being attentive”, “being respectful”, “caring about” [...]. Understanding the patients’ emotions, feelings, and concerns appears in the instrument proposed by Makoul et al. (“showed care and concern”)³⁵. It was also cited in the Consultation and Relational Empathy (CARE) Measure (“showing care and compassion”)³⁶ and in the Jefferson Scale of Patient’s Perceptions of Physician Empathy (JSPPPE) (“understands my emotions, feelings and concerns”)³⁷. When doctors demonstrate concern for their patients’ feelings, it is quite helpful and provides supportive actions.

Therefore, our study showed that physicians’ performance in BN delivery is perceived by patients in a more integrated manner, in alignment with MacLeod, who had already mentioned a less fragmented patient’s view of how doctors report news, reinforcing honesty and empathic communication as a basis for BN delivery³⁸. However, we emphasize the importance of systematic teaching. The steps exist to facilitate the teaching-learning method, but the communication process was perceived by patients as a whole. Thus, the doctors’ attitudes towards their patients could be seen in a more global manner within an empathic and cordial relationship. While a well-trained simulated patient can identify the steps based on a checklist, the impact of these steps is what patients perceive. If we want to assess real patients’ perception of how doctors communicate BN, we need to understand that the patients’ view is more global and valued according to attitudes perceived throughout the process.

One limitation of our study was that only patients from public hospitals were included. However, as Brazil has a unified health system, patients with different levels of schooling and diseases were included.

CONCLUSION

A new 16-item instrument was developed to assess how physicians deliver BN. After further validation with a representative sample, the instrument may be useful for patients to assess the quality of the physicians’ performance in delivering BN in actual clinical practice.