Medical knowledge of protocols and other strategies used to communicate bad news

Among the existing communication protocols for conveying bad news, SPIKES is one of the most popular worldwide¹¹. In the literature, the greater prominence of SPIKES is justified by its flexibility¹². In the present study, this popularity was also demonstrated, as most professionals reported knowing only the SPIKES protocol, and the remainder did not know any, with emphasis on the following answers:

I know and have incorporated SPIKES (P6).

I use some techniques. But as for a protocol, honestly, I don’t remember (P3).

I must have heard about it [about other protocols], but the only one that I have already tried to practice was the SPIKES protocol, because it is more of an everyday use (P1).

Other protocols were not mentioned by any of the interviewees. However, it is noteworthy that the P-A-C-I-E-N-T-E protocol is based on SPIKES and that the CLASS protocol essentially has the same six steps as SPIKES, arranged into five steps^8),(9. All protocols are based on the same axis, supported by the identification of what information patients have and what their expectations are; offering information clearly and according to the patient’s wishes; providing support; and highlighting the importance of cooperative participation¹³. Although it does not specify names, the similarities between the protocols were recognized in the following statement:

I think these protocols are all kind of similar. The feeling I have is that most of them are based on SPIKES. When a different one appears, I immediately say that it is a modified SPIKES (P12).

The similarity of the approaches was observed, even among the professionals who did not have knowledge about the protocols, demonstrating that they rely on points considered essential for adequate communication with the patient¹³. According to the literature, a consistent preference for cancer patients is direct and clear communication, as long as their feelings are taken into account¹⁴. This practice can be achieved through the use or non-use of protocols, as shown in the following reports:

I don’t know any protocol, but I try to extract a little information from the patient about their condition and, as they tell me what they understood, I explain (P2).

I do not use any protocol. I try to use a simpler language, giving the person time to understand. I always ask if they understand, if they know what is happening, the treatment, the evolution, the outcome itself... (P4).

Academic training on the communication of bad news

Regarding the academic training focused on communicating bad news, the respondents reported having had little or no discussion on the topic, as well as access to protocols. It is known that communication skills training programs can provide greater awareness of emotions and represent an opportunity to practice communicating bad news¹². However, the professionals’ reports showed a gap in the theoretical-practical training during undergraduate school and even during the residency period:

When I was in medical school, I didn’t have that kind of training. We didn’t even talk about palliative care, I never had anything about it. I learned about it only in the Oncology residency, I did not even have it in Internal Medicine. But it is very important [to know some protocol], especially when you have no experience (P3).

Communication with patients should be developed further during undergraduate school. In Internal Medicine, I only had contact because I had a geriatric and palliative staff. During undergraduate school, it was in the internship, during a rotation with the same staff, but nothing specific or directed (P8).

In fact, studies carried out in different countries disclose a lack of training during academic formation, which explains many of the problems reported by health professionals^9),(11),(15. In Brazil, a recent study with 162 medical schools found the teaching of communicating bad news in only 41 of them¹⁶. Therefore, it is necessary to improve the curriculum on this topic¹⁷. Regarding this need, the following statement stands out:

I find it very strange and different not having had contact with this in undergraduate school. It is essential, it should be included in undergraduate training, practiced since the beginning (P1) .

Effects of using communication protocols for conveying bad news

The literature supports a communication strategy for conveying bad news in which the aspects of the protocols are incorporated and adapted to the physician’s experience and the required specific needs. It will not be always necessary to follow all the steps of SPIKES, for instance; it is important to be guided by the patient’s demand and not just stick to the checklist¹⁸. The effectiveness of the communicative process demands flexibility, and it is important that the protocols help to face eventual obstacles, but without hindering the uniqueness of the moment⁷. The interview reports and the literature are in agreement:

We are based on SPIKES, but we adapt it to our reality and the patient’s needs. Often, I don’t need to use the full protocol or only the protocol is not enough (P7).

Communication protocols are a little different from clinical protocols. [...] With a communication protocol, there is no such strictness. It should not harden the relationship; after all, we are talking about communication. There is no formula (P5).

I really like the SPIKES checklist, but I have added things I learned over time, while working with colleagues and with the patients themselves (P11).

The physicians’ opinion on the usefulness of protocols, such as SPIKES, was based on their didactic organization of the main pillars on which the transmission of bad news is based, aiming to cause the least possible negative effect on the patient⁵. Another positive effect would be the emotional reassurance of physicians and patients. For the professional, the bad news is often linked to frustration and guilt and, particularly in the oncology consultation, great anxiety is experienced by the patient and their family¹⁹. Therefore, a tool that provides emotional support translates into the establishment of a better doctor-patient relationship, since one of the key aspects of communication is emotional stability and support²⁰. This can be observed in the following reports:

I use SPIKES, its assumptions and principles for a more compassionate communication [...] I keep remembering it, no matter how nervous or emotional I am, no matter how much I think the conversation is taking too long, that I need to give some orientation, the SPIKES protocol guides me (P12).

I really like SPIKES, because it gives a sense of ambiance and “settings”. I think the protocol helps you to review cases on a daily basis in an organized and appropriate way, considering the number of patients and the fact that it is not a simple conversation that can occur anywhere (P11).

Difficulties in communicating bad news

Oncologists and palliative care professionals find themselves in situations that demand the communication of bad news. At that moment, several difficulties may arise, from which three subcategories were selected: “Impasses related to the environment, time and demand”, “Impasses related to the doctor-patient-family bond” and “Medical feelings”.

Impasses related to the environment, time and demand

Regarding the work circumstances, an overload of patients in the service, little availability of time during consultations and an inappropriate environment in terms of embracement and receptiveness were found in the interviews. In the international literature, not having enough time to manage the situation and provide greater support to the patient was the main source of complaint among health professionals²¹. However, there were also complaints by the physicians regarding the lack of an adequate place for the conversation, as well as patient demands and relationship problems between the health team members²². This last point was not evidenced in the present study; however, there was an agreement related to the other points in the following reports:

The main problem is regarding space. Something that really bothers me is that there is always someone who comes in to get something. Sometimes it distracts me a lot and even irritates me. If I had an adequate room just for conversations it would be much better (P12).

The hardest part is the volume. I hardly have a day with few patients or few things to do. This makes it impossible to spend 30 minutes or 1 hour on a bad news communication. Thus, sometimes there is no adequate place or enough time. Excessive noise and demand end up not allowing us to give each patient the right amount of time to talk (P11).

Impasses related to the doctor-patient-family bond

Some situations are considered to be more complex. In the literature, physicians describe it as extremely difficult to communicate bad news to patients with whom they have a closer relationship²³ and consider it a deeply apprehensive situation to deal with younger patients¹⁴. In agreement with these studies, the following statements are evident:

What affects me the most is telling the patients you have known for longer, when you have been following the treatment and the disease progresses. This is the most difficult moment because you already have a bond with the patient, right? (P3).

The most difficult situations are always those when the patient is very young, when they have a small child, when patients demonstrate great spiritual suffering and feel they have not lived according to the principles they thought were important... and at the time of death, they feel despair (P12).

Another difficulty pointed out by the professionals is caused by the family itself. In their eagerness to protect the patient from greater suffering and from the emotional conflicts that may arise, it is common for the family to try to intervene in the communication process, requesting that the truth be “fractionated” and the individual spared from the news. This desire to spare the patient an adverse prognosis has been an impediment to a more direct communication¹⁴. Moreover, a study has shown that the increase in the anxiety of patients after receiving bad news is associated with the increase in anxiety of relatives who accompany them²⁴. These questions were also raised by the interviewees:

Sometimes, it is the family itself that complicates things, with that conspiracy of silence. The body belongs to the patient, they have every right, they are lucid and the family does not want to tell them. For me, the biggest difficulty is when that happens (P3).

The family, in most cases, is not prepared and gets more distressed than the patient, further destabilizing them. It is not easy dealing with this situation (P10).

Medical feelings

Regarding personal vicissitudes, a problem that was pointed out, in agreement with the literature, was to communicate bad news without hindering the patient’s hope and expectations regarding their future^14),(21. In this regard, the following statements stand out:

There is a bad feeling, I suffer because the situation exists. Not because I’m the one talking, but because the person is going through it. As a physician, I see myself in the role of helping them to go through that and I’m worried about how the patient will deal with that news after leaving the office (P8).

I feel bad for not living up to the expectations. This affects me a lot and makes me sad (P1).

In view of the curative perspective, still very present in western medicine, the end of therapeutic resources is often seen as a failure of medical skills and the capacity of Medicine itself²⁵. These aspects can affect the transmission of bad news, which can be overly direct or end up being euphemistic and generate a lack of understanding of the real situation, as reported in the following statements:

My biggest difficulty is recognizing that I may not be able to help as much as I would like to. It gives you a certain feeling of helplessness, of failure. It is inevitable, at least for me (P9).

In everyday life, some cases generate an emotional lack of control. I feel bad about having to give bad news, sometimes I even try to mask it (P1).

Moreover, one’s personal fear of death can also affect the professionals. The literature shows that a considerable part of the medical community does not consider itself qualified to talk about this in depth, either because it is a general taboo in society or because of the physician’s own denial, who feels uncomfortable because death is something uncontrollable or because of the remembrance of their own finitude^23),(26. However, there was no perceptible consensus in the interviews about this difficulty:

I think the biggest problems we face as the medical class are the miscommunications. Often due to a difficulty by the doctor himself, instead of the patient, to talk about death and the lack of a cure. To admit, as a physician, that I am not comfortable with the subject (P11).

I see death as something that is part of life and that everyone will get there someday. You can be sad, but you have to get over it (P5).