1.1 Significance of effective and trustworthy communication in conveying a diagnosis

Conveying diagnoses is one of the most difficult tasks that a physician has, and one of the most sensitive moments to live for patients and their relatives. Determining a patient’s health condition requires many steps; thus, the precise moment when the information is delivered to the patient and its modalities may vary depending on numerous factors. For example, it may happen after the patient has received clinical results; unexpectedly, as incidental finding; or, amidst the examination of symptoms that seemed to lead somewhere else. Due to its multiform nature, a diagnosis takes place in different settings: it could be the physician’s office as far as the hospital hallway; nowadays, it could also be indirect and happen in a virtual place such as the section of reports of the electronic health record accessible to patients. A specific diagnosis may be predictable, this also calling for different strategies and approaches.

Diagnosis does not take place in a single moment: it is instead a collection of information that gives shape to the overall picture, a process that leads to a name and a definition. Nonetheless, there is a specific point in time when patients (and eventually their families or companions) become aware of their condition. This sensitive occasion is both the end point of clinical investigations and the starting point of the therapeutic pathway, but also an impacting episode in the patient’s story. It is a turning point that originates from communication.

At the origin of the innovative study protocol that is the main subject of this article, there is the strong conviction that the quality of communication should be pursued and always safeguarded: not only it strengthens a positive relationship between the speakers, but it is helpful in creating a solid therapeutic alliance between the patient and the physician [1–4]. Doctor-patient relationship is the core of the therapeutic journey and highly impacts its outcomes, such as the quality of care, patient’s safety, autonomy [5, 6], adherence, and compliance [7–11]. It has already been acknowledged to be a clinical tool [12–15]. It is sometimes even legally considered “treatment time” (as it is in Italy: see [16]) and knowing how to communicate properly is considered part of the doctor’s responsibility [17–19].This is especially true in the delicate context of conveying a diagnosis, where patients “submit themselves to be determined in their future condition by the one they consult” (see [20], p. 28).

Due to its relevance in patients’ life, the moment of diagnosis deserves a dedicated setting and a reasonable duration; unfortunately, it is not always possible to guarantee the proper modalities in the complicated hospital setup: lack of time and places to carry it out are among the causes of diagnoses that are conveyed in undesirable settings. Nonetheless, aware communicators can preserve the value of interaction even though circumstances are adverse. Studies show that even though the conversations with the doctors were brief, patients reported perceiving longer durations when the conversation was satisfactory for them [21, 22]. This reinforces the notion that well-conducted communication is of utmost importance, not only in terms of patients’ perception but also as a starting point (or transitional phase) within the therapeutic journey [23].

Effective physician-patient interaction means surely conveying clear information, but also being compassion and empathic with a human being that is experiencing a turning point in life. Doctors with communication competence are more likely to be understood by patients and are more likely to establish a cooperative relationship with them [24–26]. In other words, a communication of quality cannot be simplified to a to-do-list that the doctor checks during the interview, nor should reduce the patient to the diagnosed disease; instead, it calls for an in-depth vision of the phenomenon and the advancement of specific skills.

1.2 The case of severe diagnoses

Given that a quality communication is always essential, it is worth it to place heightened emphasis to the way we speak in thorny circumstances; this happens, for example, when we are engaging with vulnerable subjects, conveying important information, and delving into sensitive topics [27–29].

All the above conditions are present in the context of severe diagnoses. Indeed, the patient is always a vulnerable subject; particularly when the condition of a severe diagnosis is met. Serious medical verdicts inevitably call for existential changes that should be acknowledged within the dialogue between clinicians and their patients. Vital information is conveyed by the physician about delicate issues, such as the description of the disease, suggested treatment, and how it affects patient’s life. At this moment, their conversation is not only about life, but also calls for the inevitability of death and its proximity. Patients are people, meaning that they do have a story and a present. They have roots, personal beliefs, come from different educational backgrounds, professional careers, and variety of experiences. They have families, friends, hobbies, concerns, and they look at the world with their unique lenses. The impact of a grave diagnosis is not predictable; but it is not hard to envision the collision on a human life.

The diagnosis of pancreatic ductal adenocarcinoma (PDAC) is a solid example. In fact, PDAC is an especially aggressive form of cancer, characterized by a bleak outlook resulting from diagnoses often made in advanced stages and limited responses to available therapies. These combined factors contribute to a high mortality rate, as the 5-year survival rate stands at a mere 11% [30]. Therefore, we are dealing with a diagnosis that frequently comes as a surprise and occurs abruptly. Individuals who receive this diagnosis are embarking on a complex journey involving acceptance, treatment, and hardship. Delicacy and clarity of information are cornerstones in the communication of such a complex diagnosis.

2.1 An interdisciplinary project: Advantages and hindrances

The conception of this study is strongly characterized by the idea that the interdisciplinary approach is of profound utility, especially when applied to real-case scenarios. The article considers as a reference to distinguish the definitions of multidisciplinary, interdisciplinary, and transdisciplinary [33]. Thus, the research here described is considered interdisciplinary due to the close cooperation of the different fields involved. This research attitude is underscored by the involvement of various disciplines converging to investigate a shared subject and guided by philosophy to reach results and discuss about them.

Even though the need for research about this topic was high and shared among clinicians who deal every day with this severe disease, the journey to develop the design of the study has not been obvious. Exactly because of its interdisciplinary roots, it required time for all the actors involved to find each other and to create the teamwork: the dialogue between philosophers and clinicians (the experts who collaborated at this project) is not yet common and for sure has not dedicated spaces. The challenge was then to merge different methods to organize all the fields of expertise involved and thus succeed in the final interdisciplinary discussion. Perspectives from both hard and soft sciences had to be combined with the idea in mind to overcome this distinction and cooperate on a shared important topic as equals. On this topic, see the famous work of Charles Percy Snow [34]. Also, Oliver Sacks in his autobiographical book romantically reminds to the reader the times when humanities and sciences were not sharply distinguished but worth of the same consideration; as a testament to that, chemists and scientists of the 19^th century wrote about chemical components as well as poems in Chapter XI, Humphry Davy: a chemical poet [35].

Who have already performed interdisciplinary research know that it is not always easy for researchers to understand each other when coming from different fields. It happens frequently to use the same term with different meaning; not to fully grasp the reciprocal technicalities; and to experience difficulties in combining different methods. A continuous dialogue between the actors involved and the common intent to pursue the project’s goal of a comprehensive image of the topic as exhaustive as possible allowed to overcome and solve this kind of hurdle.

The first tangible result of the effort is the study protocol per se as it was structured to be presented to the Ethical Committee for Clinical Experimentation (in Italy, it is the equivalent of the American IRB, Institutional Review Board). Even though this is a mandatory passage when research involves human beings, it has not been obvious how to present the study based on forms required from the hospital. In fact (especially in Italy), templates are often standardized based on clinical trials, thus using quantitative language that is not always suitable for interdisciplinary research. We thus had to translate the description of our protocol to fit a numerical standard and, of course, this was not easy as our primary concern in this phase was not to distort our perspective. We ended up with an adequate version that not only was understandable and acceptable for the Ethical Committee, but also represented the first demonstration that collaboration between markedly dissimilar fields of expertise can yield positive results.

Despite the harshness, the effort was worth it to pursue a collaboration that not only is based on scientific premises, but also integrates the human perspective in its approach to patients. The importance of structuring research this way is even more determinant if we consider that it may hopefully reflect on the way of structuring care and medicine itself.

2.2 SARS-CoV-2 impact: Changes and limitations

Since the beginning of the study took place in 2020, when SARS-CoV-2 spread all around the world, data collection was slower than expected: it is notable that SARS-CoV2 determined a significant drop of complex diagnoses that require many exams to be identified. In May 2020, it is estimated that there was already a backlog of 4 million tumor screenings to catch up with previous years (see https://www.univadis.it/viewarticle/screening-rimandati-per-covid-quasi-4-mln-test-per-mettersi-in-pari-720071, accessed on August 29, 2023; for a complete report about the Italian situation, see https://www.osservatorionazionalescreening.it/sites/default/files/allegati/Rapporto%20ripartenza-12_20.pdf, accessed on August 29, 2023). After only 1 year, Sanità24 reported 100 million screenings and 1 million fewer cancer diagnoses in Europe (see https://www.sanita24.ilsole24ore.com/art/europa-e-mondo/2021-06-17/covid-europa-100-milioni-screening-e-1-milione-diagnosi-cancro-meno-154636.php?uuid=AE8v10Q, accessed on August 29, 2023).

This unfortunate effect of the virus is one of the collateral consequences on patients with (maybe not yet diagnosed) diseases that did not fall within the category of Covid-19.

In our study protocol, the impact of SARS-CoV-2 is evident in two main areas: data collection and doctor-patient communication.

Italian Decrees mandated that only essential healthcare personnel could enter hospitals (see DL 23 febbraio 2020 n.6; DL 25 marzo 2020 n.13; L. 5 marzo 2020), and most of research projects had to be suspended. Luckily, we managed not to interrupt our data collection, instead assigning the task to audio-record the visits and obtain informed consents from patients to the involved physicians. Nonetheless, body language and context details went missed, since no one external to the conversation could take notes. The bright side of this change is that there was no external observer possibly influencing the scene. Furthermore, the interviews with patients took place on the phone: even though patients were most of times in a comfortable environment (e.g., their home, their car), sometimes they agreed to be interviewed while they were waiting for follow-up visits or exams and thus anxious and in a hurry. Nonetheless, some of them openly thanked me to help them spending time and get distracted during the wait.

It was also difficult to establish a connection with them: it is considerably arduous in scenarios where in-person communication is absent, and all dialogue unfolds in a virtual environment.

Since communication is the focus of the study protocol we are describing, it is worth to notice that we involuntarily happened to observe it in a unique scenario–or, at least, in a rare scenario. SARS-CoV-2 directly modified doctor-patient communication: the extraordinary framework had undeniable repercussions both on the practical and emotional side of care. During the pandemic period, the mood of many reflected the general atmosphere of tension. Physicians and patients had to wear masks and their conversation was affected by this requirement, since it causes lack of facial expressions and thus erases information conveyed through body language. Due to the emergency, it was not recommendable to admit anyone other than the patient themselves to the visit; however, the physicians involved in this study showed their empathy deciding to allow one person (a relative or a friend) to be in the office with them.

3.1 Philosophy in theory

The study framework of Communi.CARE is philosophical: from the very beginning, its development started from the willingness to study the interaction between physicians and patients within a philosophical framework. Not coincidentally, the purpose of the study was shared by clinicians: this confirmed that there was a need for philosophical contribution, as it was perceived as relevant by the key actors. In fact, later in the study we would have found out that patients were also very happy to contribute with their voices to a study that met their needs. It was undoubtedly satisfying to verify that the thoughts at the origin of the study here described were accurate.

The conception took root in the principle that sees communication and trust as strongly intertwined [36–38]. Figuratively speaking, the presence of a disease induces the body to speak through symptoms. Since most of us are experts neither in this language nor in giving answers to a sick body seeking relief, we need someone to do that for us. “We put our bodily safety into the hands of […] doctors, with scarcely any sense of recklessness,” writes Baier (see [39], p. 234). That is why “trust is important, but it is also dangerous” [40]. Even though we must entrust ourselves to physicians, blind trust in doctors is not typical of today’s medicine. Especially with the advent of the Internet, the phenomenon of self-diagnosis has increased [40], and many patients think themselves capable of interpreting symptoms on their own. Effective communication is thus all the more important for building an effective therapeutic relationship based on trust to achieve the expected health outcomes.

“Trust, the phenomenon we are so familiar with that we scarcely notice its presence and its variety, is shown by us and responded to by us not only with intimates but with strangers”, says Baier [39]; such is the case with the doctor–patient relationship. When people ask for medical advice, they become patients; in Sokolowski’s words, they “submit themselves to be determined in their future condition by the one they consult” (see [20], p. 28), i.e., the physician. This is the beginning of the relationship and the time that the doctor–patient interaction begins. Patients rely on physicians to restore their health. They trust them to be able to understand the meanings of their symptoms and to cure their illnesses in the best way possible. Along with Clark, “as patients […] we trust physicians to keep our health concerns first and foremost” (see [3], p. 11). Patients trust physicians to the point of getting naked in front of them (what Sokolowski [20] call “the phenomenon of nakedness,”, p. 28)—both literally, by getting undressed, and metaphorically, by sharing intimate information and relying almost completely on their expertise.

In [41] a meta-analysis is conducted to demonstrate that, despite smaller correlations “with health behaviors, quality of life and symptom severity” (p. 1), there is a correlation between patients’ trust in healthcare professionals and the patients’ satisfaction (on this topic, see also [42]). Rhodes goes beyond noting this positive correlation, claiming that “the first duty of medical ethics is to seek trust and be deserving of it” ([43], p. 51), and at the same time remarking on the strong link between trust and trustworthiness that we already find in [44, 45]. Rhodes asserts that this duty is “the source from which all of the other more specific duties are derived” ([43], p. 53), considering trust and trustworthiness to be the basis of good medical practice and a strong doctor–patient relationship.

As patients, we need to trust physicians to accept their interpretation of what our body is telling us in situations in which the “outcomes are unknown” [46], i.e., in cases of disease. Physicians’ trust in patients, on the other hand, contributes to increasing physicians’ well-being and satisfaction, thus creating positive feedback between them and their patients. This mutual form of trust enhances patients’ trust in their physicians and vice versa [1, 2].

The doctor–patient relationship is “a keystone of care” and is developed and manifested mostly during medical interviews, which are “the major medium of health care” and thus the privileged venue for fostering trust. It may be surprising to note that even though most of the medical interview is “spent in discussion” [47], during their entire course of treatment patients rarely have the chance to relate with the experts to whom they are entrusting their health. Throughout the series of medical exams, pharmacological therapy, and surgical procedures, there are few occasions when physicians and their patients meet, speak to each other, and communicate about the patients’ health and decisions to be taken. This implies that it is even more important for both the parties of the relationship—the doctor and the patient—to understand and be able to manage the dynamics of language and communication to orient within the medical encounter. The moment when the physician conveys the diagnosis here described is a great example.

Trust is “just one way in which a trust relationship may be begun” ([48], p. 10). Such a relationship may instead begin with a distrustful patient—e.g., because of personal negative experiences with the health care system, emotional instability, or a physician’s bad reputation. Or it may begin with a doubtful physician—e.g., because of a patient’s low compliance as reported by the referring colleague, because of a lack of knowledge about the patient’s disease, or because of a family relationship with the patient that makes the physician uncomfortable. Or both patient and doctor may be having a bad day and thus not inclined to build a new relationship. Examples of reasons for beginning without trust are endless. Trust must be built—often from scratch or in unfavorable conditions—to create that magnificent bond between patient and physician that is called the therapeutic alliance.

Translating the famous postulate according to which when we speak, we do things [49], it is possible to say that when we communicate, we (can) build a relationship based on reciprocal trust. Moving it to the context of doctor-patient interactions, with reference to the communication of severe diagnoses, it is evident that it is even more important to properly communicate to establish a solid therapeutic alliance. Understanding what happens in this always delicate interaction, that it is about sensitive topics (patients themselves, their health status, their lives, and more), is at the core of well managing it. This means not only that the speakers need to get their bearing in the conversations, but also that they are asked to acknowledge the emotionally charging conversation they are sharing. For example, the physician’s words may figuratively wound the patient’s mind ([50], p. 27). A moment later, they may be a balm for the patient’s mind and body, as in the beautiful poem “A fil di voce” ([50], p. 47).

It is essential to understand how language works and see the multiple layers that contribute to shape the dialogue. It is not possible to focus on interactions without having in mind Grice’s work on the implicit dimension of language [51, 52]. On the implicit dimension of language in the context of doctor-patient communication, see also [53]. Especially physicians, who lead the communication [54], must be aware of their role and choose words carefully [55]. Moreover, physicians and patients have different frameworks of reference in terms of meaning, which contributes to make the exchange of information tricky. In Austin’s words [49], it is more difficult than in a daily conversation to satisfy the felicity of the interaction.

Physicians must also be mindful of the possible crisis that for patients is entangled in the diagnosis, and questions that may remain unanswered on existential dilemmas. Communicating always means being in contact with the other speaker, in a mutable and (ideally) constantly improving and developing relationship. Since medicine is not based only on quantitative data and medical facts, it needs to embrace patients’ stories and perspectives as well. Thus, a good doctor must be a good communicator both actively, by effectively conveying information to patients, and passively, by listening to them. Being good communicators for physicians also means letting the patients’ stories come to light [56–58]. Physicians and patients must understand each other to collaborate; they must reciprocally ask questions to be sure that they are on the same page; they must make their perspectives explicit and share them. This contributes to strengthen reciprocal trust and the sense of being in safe hands. Patient’s life and death are at stake, especially in the context of a severe diagnosis, and not only the conversation must be effective, but also respectful of the sensitive moment they are going through. Recalling Ofri’s words about conveying a severe diagnosis: “[…] this would be where I’d gently work my way into what is by far the hardest conversation a doctor can have with a patient. This time, though, I started with a question: How much would you like to know?”. This is a clear example of the moment when she realized her duty to respect his patient’s desires and decisions; and maybe her empathic attitude well-played in this context: in fact, the patient asked not to be fully informed about his disease and “several weeks later, he died at home, by all accounts peacefully” [59].

3.2 Philosophy in action

Philosophy has played a leadership role in the design of the study protocol even from a methodological standpoint. Although we have borrowed established methods from sociology and tools from psychology, philosophy serves as the foundational framework for our data collection and analysis. Given that our objective was to study doctor-patient communication at the time of PDAC diagnosis from a perspective that extends beyond mere technical description, a structural configuration was required that aligned with the profoundly humanistic roots of our research. As the details of the study protocol structure have been comprehensively discussed in [31], I will here summarize the pivotal phases specifically highlighting the contribution of philosophy to each one (see Table 1).

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Table 1. Phases of the study protocol COMMUNI.CARE and, for each, the contribution of philosophy.

https://doi.org/10.1371/journal.pone.0305937.t001

3.2.4 Qualitative content analysis.

After all the transcriptions of the interviews between patients/their caregivers and physicians were completed, we performed the qualitative content analysis. The latter represents a systematic approach that is appreciated for its ease of use, allowing for data and result interpretation and reinterpretation.

It was conducted by two philosophers. After uploading all the doctor-patient interactions on MaxQda [61], a software specifically developed for this type of analysis, we created our two sets of labels. The first one was intended to identify the kind of misunderstandings that happened during communication; it was based on [62]. This codebook provides a set of labels, that we integrated with a second set of three labels aiming to identify the moment when the misunderstandings occurred (Anamnesis, Diagnosis, and Treatment). Since we wanted the labeling to be as objective as possible, we did a joint training on seven documents before performing the analysis independently. We then verify our agreement and considered it satisfying (agreement 97.9%; Cohen’s Kappa: 0.98 [63]). In Table 2, labels are explained highlighting their contribution in better understanding the problematic passages of the analyzed conversations.

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Table 2. Description of felicity/infelicity applied to the codebook; examples from our data (table modified from [32]).

https://doi.org/10.1371/journal.pone.0305937.t002

We selected this codebook as it is based on linguistic evidence, as openly stated by its authors (in fact, they refer to the codebook as LEPU, the acronym for Linguistic Evidence of Problematic Understanding). Since our philosophical approach has its roots in the belief that language and action are intertwined and, going further, that language is itself and act, we find this codebook aligned with our vision of doctor-patient interaction. In fact, the felicity of the linguistic act is not met when a misunderstanding occurs; the latter could be solved or not, thus succeeding in communication or still pursuing the speakers’ mismatch of meanings.

As it emerged from the table, further investigations should delve into the classification of misunderstandings to better highlight the most dangerous passages, i.e., where infelicity happens without being properly solved.

3.3 Philosophy in outcomes

The present article is not conducive for discussing the results of the study in a thorough manner (that can be read in [32]). Nonetheless, a glimpse at some previous outcomes we obtained may be useful to grasp the potential of interdisciplinary research. While describing present issues, the philosophical approach can offer possible solutions and open research questions. In this specific case, we searched for moments of dialogic difficulty between the doctor and the patient, identified them, and described them. This allows for the subsequent formulation of potential "adjustments" to those moments of difficulty based on observations and problematization. As mentioned above, philosophy is also directed towards the future: finding results rarely fails to pose further questions, suggesting new possible research directions. Among the prerogatives of philosophy is undoubtedly continuous study and an evolving understanding of reality, which itself is in a perpetual state of transformation.