How do Hematologists Communicate with Patients Suffering from Chronic Lymphocytic Leukemia?

Chronic Lymphocytic Leukemia (CLL) is a chronic hematologic malignancy with great heterogeneity and unpredictable clinical course. The European Research Initiative on CLL (ERIC), in the context of its CLL Patient Empowerment Program, conducted a study exploring hematologists’ experience of communication. Thirty semi-structured interviews were conducted with hematologists caring for CLL patients in Greece. Inductive thematic qualitative analysis was employed revealing 3 major themes: (i) disclosure of information encompassing ‘negotiating the level of disclosure’, ‘the power of cultural perceptions’, ‘fear of being held culpable’, ‘fear of patients’ and own emotions’; (ii) medical-decision making which described ‘balancing autonomy and beneficence’, ‘considering patients’ preferences’ and ‘adhering to practice guidelines’; (iii) emotional support which included ‘assessment of emotional distress’, ‘identifying and regulating patients’ emotions’ and ‘maintaining a supportive relationship’. In conclusion, physicians are aware of the importance of communication and its potential impact on CLL patients. They use a wide range of communication strategies which serve the diversity of communication goals they Physicians’ Communication with CLL Patients Karamanidou et al. European Journal of Health Communication 2021, Vol. 2(3) 110-135 CC BY 4.0 111 must achieve. However, the majority have not received formal education on patient interactions. Present findings highlight the need for specific communication protocols, guidance and training that will empower physicians to overcome challenges, inherent to the nature of CLL.


Design
The current study employed qualitative methodology, in order to explore hematologists' experiences in-depth. Qualitative data were gathered via semi-structured face-to-face interviews with hematologists treating patients with CLL during 2016 and 2017.

Participants
Thirty in-depth semi-structured interviews (N = 30) were conducted with physicians affiliated to hospitals and hematology clinics in major cities all over Greece (Athens, Thessaloniki, Alexandroupolis, Larisa, Herakleion, Serres). Participants had between 2 and 32 years of active service (M = 14.5), while 4 were in hematology training and 1 had just retired. Eighteen were female and twelve were male. Purposeful sampling was used to intentionally select participants based on their ability to elucidate the specific experience under study (Robinson, 2014). Participants were CLL experts, namely practicing hematologists and hematologists in-training who specialize or are involved in the treatment of patients with CLL. Saturation was achieved at 28 interviews but data collection continued for 2 more interviews to ensure and confirm no new themes were emerging (Saunders et al., 2018). Individual participants were initially approached over the phone and none refused to participate.

Materials
The interview guide was developed drawing on the existing literature on the communication between hematologists and patients with hematological cancers (For the whole guide please see Appendix A). Study findings by Carey et al. (2012), Christie and Glew (2017), Alexander et al. (2012), and Chhabra et al. (2013) provided useful insights about the topics worth covering. These topics included the hematologists' experience of breaking bad news, communication of medical information, patient contact, treatment decision making, communication tools and training, psychosocial assessment and support. Specifically, Carey et al (2012) found that about half of their study participants (i.e. hematological cancer survivors) preferred a passive role in decision making. It was therefore decided to explore Greek hematologists' experience on decision making, how this is negotiated between parties and which factors might influence this decision. In the case of Alexander et al. (2012), findings revealed that unambiguous prognosis estimates for mortality or cure were given at least half of the study participants. Once again, this finding prompted us to explore the communication manner in which equivalent estimates are given by Greek hematologists. In the case of Chhabra et al (2013), initial consultations between physicians and hematological cancer patients were analysed and two types of language were distinguished; deferential which emphasized patient autonomy and directive which focused on physicians' recommendations. In the present study we decided to ask hematologists about the process they followed, how they checked for patients' understanding and strategies they used to aid comprehension. Finally, in the review by Christie and Glew (2017), it is mentioned that hematologists have a particular need for communication training but do not feel confident with their level of training in communication. This prompted our decision to explore Greek hematologists previous training, tools and level of confidence during difficult decision points throughout the disease course.

Data Collection
The interviews were conducted by one of the researchers (CK), who is a health psychologist and has extensive experience in qualitative research. The researcher had no prior relationship with participants before the study, they only knew about her professional background. The participating hematologist chose the place where the interview took place: hematologist's place or researcher's workplace. No one else was present at the time of the interview. Three interviews had to be conducted over the phone as the area participants were located in was remote and face-to-face contact would have been difficult to achieve. However, the researcher felt that this did not affect the rapport with the participants. Interviews took place in a private room, were audio-recorded and lasted from 20 to 60 minutes.

Ethical Issues
During recruitment, participants were informed about the purpose of the study, the organization hosting the research study, the study's procedure, their right to anonymity and confidentiality, their right to get informed about the findings after the end of the study and finally their right to withdraw from the study at any point without giving a reason. All participants gave their consent for

Results
The analysis and interpretation of the study findings revealed three main themes; disclosure of medical information, medical decision-making and emotional support. A schematic representation of these themes is presented in Figure 1.
An important general observation is that none of the participants in this sample had ever received formal communication training within the context of their medical school or specialty training. In order to achieve all of the physician-patient communication functions, the majority adopted the techniques of senior physicians or developed their own through experience alone. One participant characteristically reports: "Formally never. Our training took place in the context of our specialty training, observing and copying the hematologists, our professors, our mentors while in training" Participants faced a number of communication challenges, of which the most important concerns the adaptability they have to show for effectively communicating with each and every patient about topics of such difficult nature in order to cater for a variability of ages, educational levels, capacities, values and attitudes. As a consequence, physicians frequently doubted their approaches. One participant muses on the impact of this gap in training: "You cannot let such important issues be handled according to people's intuition….as essentially that's what we do, we cope with it, each one of us in accordance to his/her intuition and personality and that's not always best … it does not always help us make the right call …" (177_270-272/F, 32YEX) It should be noted at this point that all of the participating CLL experts also treated patients diagnosed with other hematologic malignancies. Although they shared their experiences of interaction with CLL patients specifically, some of the issues they quoted can be characterised as overarching in nature.

Disclosure of Medical Information
The theme of disclosure of medical information contains subthemes reveal the conditions under which physicians consider varying the level of disclosure as well as the fears they experience during the disclosure process.
Negotiating the Level of Disclosure. Almost all physicians felt uncomfortable delivering bad news such as initial diagnosis, relapse and poor prognosis. Their decision to fully or partly disclose as well as the approach and content of their disclosure was governed by their past experiences, their own moral compass, as well as the legal requirements of their profession and workplace context. One participant characteristically describes the timepoints in the disease course that pose the greatest challenges: "Definitely as a human being I find it hard to announce bad news, give a very bad diagnosis or tell relatives that things are not going well, it is much worse when I have to say we can't hope for anything, we are at the final stage, these are always difficult points …" (164_236-239/M, 8 YEX) As a consequence, some physicians describe disclosing information only selectively: "Truth is medicine which should be given only to those appropriate, to the extent appropriate and when appropriate" (166_408-409/M, 5YEX) Physicians would often disclose to patients depending on their individual profile but also according to their explicit requests: "When your patient is willing, communicative, intelligent and wants to know the truth, and it is necessary for him to be involved as a partner in your therapeutic effort, then he must know everything" (173_152-154/M, 22YEX) However, even when sharing information with regards to the disease they completely avoided to offer numerical information i.e. percentage of survival, or expected time to relapse, or life expectancy in years. Instead, they would qualitatively describe the situation. For example: "This is a dangerous disease that will require treatment many times, unlike infections that will only be treated once. Without appropriate treatment, this disease can be life threatening" (152_14-17/M, 24YEX) Finally, many differentiated disclosure between patients and their families. One participant stated: "To the patient I reply with optimism, to the family with numbers" (154_149-150/M, 11YEX) The power of Cultural Perceptions. On conditions, physicians did not disclose the whole truth as this was not considered to be conducive to the patients' benefit: "I don't think there is anyone in the Mediterranean region who wants to know that they have 6 months to live and this will help them in any way…I don't believe it" (153_75-76/M, 18YEX) Further, participants reported that they are often under pressure from the patients' families to withhold the diagnosis from the patient. This is often against the physicians' practice and communication principles. As one participant put it: "The older the patient, the more likely it is that the relatives will come and say to you, don't tell him, he is elderly, let's not upset him" (158_105-107/F, training). Another participant said: "I have concluded that if you disclose the diagnosis to the patient at the beginning, you have a better communication with him. But many times, I don't get to start off with everyone this way. In Greece, the family precedes, the carers invade and the patient is alone outside. Many times, you are asked not to disclose the diagnosis to the patient" (155_59-64/F, 12 YEX) Conversely, other participants recognized the cultural context within which they are operating and respected the wishes of the Greek family, especially in the case of vulnerable patients. This physician recognizes the motivation behind the family's desires: "The Greek family has its own protective mechanisms that are acceptable to me at least when it concerns very young or very elderly patients" F,14YEX) Another physician recognizes a change in their own attitude overtime: "Giving hope is more important than hiding the truth, in these cases one has to inform the relatives, in Greece the family is essentially like one person, it is a different approach than abroad so the relatives know but the patient …" (151_76-80/F, 15YEX) Fear of Being Held Culpable. Some participants mentioned that the diagnosis itself is difficult to communicate, however explaining both the consequences of treatment and, especially, the variability of outcomes present an even greater challenge. Fearing they might be blamed for any bad developments in the patients' health, they have to repeatedly stress that CLL is life threatening. According to their collective experience, the event of a death might leave them unsheltered to the relatives' anger, whose denial might not have allowed them to truly comprehend the gravity of the situation. The following passage illustrates a physician's thoughts on this issue: "No matter how embarrassed I am to say it…we are now practicing 'defensive medicine' … I am now so scared of criminal prosecution, I can sometimes exaggerate bad outcomes … the first thing that comes to mind, is that they may not have realized that they might die … There have been incidents when somebody died very quickly from the side effects of chemotherapy, and lawsuits ensued … It is burdensome for your psychology, as you grow older anxiety slowly piles up on you" (144_114-122/F, 7YEX) Fear of Patients' and Own Emotional Reactions. Some participants described their fears about the reactions of patients upon disclosure as well as their own reactions. This stemmed from their desire to deliver the news in a humane but professional manner. One participant said: "What I'm afraid of is the reaction of others because someone can... be acquiescent, take it well, but some will express doubts about the situation, I will feel like I have not communicated it appropriately, and I caused the patient grief, or that he has not understood well enough what I have said, this is the most stressful part, how the patient will take it. I think I don't feel competent enough to feel fine .. Others were concerned that the disclosure of a hematologic malignancy diagnosis will have a major impact on the patients' state of mind and this dictated to a large extent the manner in which they communicated it. One physician shared: "Somebody might say you have to come out with it, explicitly and as it is, on the first day but I can't personally do that because I am thinking about that first evening and fear that they might make an attempt to take their own lives" (143_53-57/ F, 25YEX)

Medical Decision-Making
The present theme reflects the main factors determining the medical decision-making process thus creating a spectrum of eventualities of patients' level of involvement.
Balancing Autonomy and Beneficence. Physicians expressed a whole spectrum of views with regards to shared decision making which reflected their perception of their own role within the medical process and their beliefs about the appropriate level of patient involvement in therapeutic decisions.
For some physicians it was important that the selection of treatment was achieved through a transparent process as patient involvement is necessary for treatment acceptance and compliance. One participant mentioned: "My opinion is that every man has a right to decide knowing that he suffers from a malignancy, has a certain life expectancy and everything that he will go through … does he want to receive treatment causing hair loss or not for example, as it is my principle to co-decide treatment with my patient without lying to him" (166_94-97/ M, 5YEX) Keeping the balance between respecting patients' rights (patient autonomy) and ensuring their well-being (principle of non-maleficence) while satisfying their own sense of duty and maintaining a strong work ethic presented a challenge for physicians. Different approaches of resolving this predicament emerged during discussions about shared decision making with participants. The following passage demonstrates one such approach: "I believe in the patient's autonomy and if the patient insists on receiving something different than what I am proposing or recommending, I suggest a change of the attending physician or have them sign in their file that they are not accepting the treatment I have proposed" (166_246-249/ M, 5YEX) A few described that they cannot support a choice of treatment they do not stand behind and, hence, resort to stirring patients towards a decision they feel is the best course of action "… in my opinion we might think that we allow them to choose but actually we don't let them choose because it is the manner that we ourselves choose to inform and the way we present this information, it is completely subjective because this is the way I have perceived three different treatment options and certainly there is one I prefer …" (176_219-224/F,10YEX) Considering Patients' Preferences. Some participants pointed out that patients do not always want to take part in the decision-making process. It might be due to the lack of knowledge or the fear they are experiencing because of their disease but patients often do not want to voice an opinion and even the sheer prospect of contributing to a decision frightens them. One participant characteristically said: "Usually, what you get from a patient to whom you have communicated the diagnosis of a serious disease is: doctor, I don't know and Ι put myself in your hands" (162_209-211/F, 8YEX) Nonetheless, the majority of physicians took into account patients' preferences when recommending a treatment. Certain therapeutic options for CLL require patients and families to adapt their daily life for the duration of the therapy. This held particular weight for physicians who understand the commitment required by patients and thus ensure patients are engaged in the decision-making process.
"I try to a certain extent, depending on his/her profile, wishes according to personality, lifestyle, place of residence, capability to come to the hospital for treatment all of these factors I try to take into account when I suggest 2 or 3 options so we can arrive at a decision together …" (169_263-270/F, 14YEX) Adhering to Practice Guidelines. A small group of physicians mentioned that their own clinical practice is governed by international guidelines to which they adhere and share with the patients. This is well illustrated in the following passage: "If two different treatment options appear as equally valid, I always mention that, also according to recent recommendations, the patients need to participate in the therapeutic decision" (145_365-370/F, 9YEX).
Conversely, others voiced the opinion that treatment decisions are defined by treatment protocols within which there is no room for manoeuvering. One participant said: "Because we work in a large clinic, there are protocols to follow … so when we deviate this becomes an issue for discussion in the clinic board … so we never give the choice to the patient … I think … I have always thought that this is not ethical … for the patient to choose his own treatment … meaning he does not have the knowledge … that's why he trusts me … we operate according to protocol" (144_207-213/F, 7YEX)

Emotional Support
The subthemes of the present theme reveal that physicians assessed patients for distress, regulated emotional responses and supported patients through a healing relationship. All participants acknowledged the importance of maintaining patients' physical and emotional wellbeing after the diagnosis and throughout the disease course of CLL. They also recognized their own role in the assessment of patients' emotional status and their support through emotional difficulties arising from the disease and its consequences. Most physicians adopted a holistic approach to care as they perceived patients' physical and emotional condition to be interlinked. Assessment of Emotional Distress. Physicians did not formally assess patients for distress, however knew that patients were at risk at different key points during the course of their disease. Specifically, physicians shared their observations, namely that patients with CLL were suffering from anxiety at diagnosis and also in the event of relapse. Furthermore, that in the case of chronic conditions or long hospitalizations patients were at risk of depression.
With this in mind, physicians always started the consultation aiming to elicit information about the patients' emotional status first. One participant shared: "Always the first question I myself ask in a consultation is how are you, how do you feel? How has your mood been? if you want to be informal, how are your spirits? If more formal, how have you been feeling during this time? Are you enjoying life? An initial general question that is quite exploratory and then while in conversation one thing leads to another" (164_117-121/M, 8YEX) Physicians maintained the belief that patients could perceive true interest when expressed by their physicians. Therefore, they made an effort to remember issues patients mentioned had troubled or upset them so that they could bring them up in the next consultation and achieve some continuity. The following passage illustrates: "What matters to the patient is to be interested in him as a whole on a human level, on both an emotional and social front; not just see him as a medical case. Be interested in the problems that his situation creates in his family and social environment" (142_188-191/F, 2YEX) Physicians described that it was only through experience that they came to understand the importance of the emotional aspect of care and their own role in its provision. One participant describes: "In the past, I was much stricter with my patients, not giving them the time they needed and not listening to their problem or the way they perceived their illness and especially the way it would affect their social, family and their professional life. Nowadays, I am devoting a lot of time to this aspect of the consultation ... because when you are younger you want to practice your therapeutic skills ... now I see that communicating with the patient is much more important than giving him the medical facts, you have to bring him close to you so that he feels he has someone who cares about him, someone who does not just care about curing the illness, but also cares about the patient's psychology" (151_27-35/F, 15YEX) Identifying and Regulating Patients' Emotions. Physicians' first and foremost concern in the initial consultations was to alleviate patients' fear and emotional despair. They strived to gain patients' trust, establish rapport and avoid letting patients feel disheartened or burdened with negative emotions. Throughout the disease and especially at key timepoints (e.g. diagnosis, start of treatment, relapse) they found themselves dealing with patients' emotions through lengthy discussions. The following passage demonstrates this:

European
"20-30% of patients who are chronically ill have some form of depression but we try to overcome it by talking with patients a lot, either within our daily routine, even on weekends we come in the clinic, when they see us, they always feel better, we have this communication, we don't treat them like whack on the head 'you have this disease, you have to do this'… we have a rapport" (172_113-117/M,16YEX) Observing emotional cues was essential to the identification of emotions and subsequent intervention by the physicians. One participant shared: "I think you approach this according to the patient's psychological state and how he has received it (diagnosis). So if you see that the patient is feeling low…too low, you will accentuate the positive points … for example … it is very possible that everything will go well" (144_145-149/F,7YEX) On many occasions, physicians described normalizing patients' emotions, namely validating a negative emotional response in the face of a grave health situation. One participant shares: "I tell them 'you are in the hospital and have been diagnosed with cancer, of course you are upset. You need help, there are simple medications that will help you at least get some sleep' … I acknowledge the emotion and then I call a specialist" (153_203-206/M,18 YEX) The most important element of emotional regulation was the inspiration of hope. Physicians always made certain to give patients hope of a positive outcome. One physician shares: "Let's say it's not going well, I tell my patients 'we didn't have the response we wanted', I always count myself in, 'we didn't have the response we would like to have but there still room to do things', I always leave a glimmer of hope even if I don't have hope myself …" (143_178-182/F,25YEX) Maintaining a Supportive Relationship. A minority of physicians described that they had the opportunity to refer patients to mental health specialists for counselling or therapy sessions within the hospital. In most cases, patients were assessed by liaison psychiatry services and prescribed anti-anxiety or anti-depressants. Few were offered counselling by psychologists and social workers who were part of hematology dedicated multi-disciplinary team. As such, physicians were often the only healthcare specialty supporting the patient and they were very much aware of the fact that patients derive a tremendous amount of emotional support from their relationship. Indeed, the relationship often traverses the strict patient-physician relationship boundaries.
"The relationship becomes a family one, a relationship between relatives, the patient makes you part of his life, because he meets you, you see each other again and again, he searches for you, he anticipates from you, he hangs on to you, he idolizes you, he deifies you …" (162_173-176 /F, 7YEX) In closing, it is worth mentioning that physicians recounted using an array of techniques to in order to accomplish their communication goals with patients. For the purposes of this paper, these have been grouped into three broad categories. The first is labeled 'Improving patients' health literacy' and strategies included aim to improve patients' comprehension, encourage empowerment and engagement. The second is labeled 'Provision of patient-centered care'; this group of strategies demonstrate the provision of care while responding to patients' needs by tailoring information, allowing time for adjustment and validating their autonomy. Finally, 'Emotional Cushioning' is a group of strategies aiming to provide reassurance, encouragement and demonstrate compassion while preparing patients for all eventualities. The above categories have not been matched to the current study's themes as none were exclusively used per theme. Instead, physicians used a mixture of strategies of the aforementioned communication strategies for an indicative list, please see Table 1.

Discussion
The current study examined the experience of 30 hematologists in Greece treating patients with CLL using qualitative interviews concerning communication in clinical practice. Hematologists' attitudes on important aspects of physician-patient communication were identified and explored. Analysis revealed three themes namely disclosure of medical information, medical decision making and emotional support which aligned with Epstein and Street's description of certain communication functions in the context of patient-centered communication in cancer care (Epstein & Street, 2007). The theme of 'Disclosure of medical information' corresponded well with the 'exchanging information' communication function. This function emphasizes the importance for physicians to recognize patients' information needs, communicate information overcoming the barriers of health literacy and communicate prognoses accurately while maintaining hope. The theme comprised of a number of subthemes which focused on the physicians' challenges with communicating the right amount of information when communicating bad news and the influential power the cultural context has over such decisions. Furthermore, the fears that physicians might experience that might also drive their communication behaviors.
Medical decision-making corresponded well with the core communication function bearing the same label namely 'making decisions'. This function requires the physician to actively involve patients during the information exchange and deliberation making process. In the case of the present study's participants, it was apparent that adhering to practice guidelines and considering patient preferences were naturally primary concerns. However, participants were also concerned with balancing patient autonomy and beneficence. A whole spectrum of eventualities of patients' involvement resulted from the resolution of their internal battle.
Similarly, to Epstein and Street's (2007) 'responding to emotions', the present study's theme of emotional support comprised of the elicitation, identification and assessment of emotional distress and regulation of patients' emotions. Another aspect of the theme's description was maintaining a supportive relationship which demonstrated that hematologists were aware that the relationship itself constituted emotional support for the patients as it evolved over time. This aspect was reminiscent of another communication function namely 'fostering healing relationships' which emphasizes the importance of rapport between physicians and patients as well as the agreement about mutual trust and expectations. Provide analogies "I always offer this opportunity, I put it mildly, in many words, to describe to them that there is nothing wrong with visiting a mental health specialist, I usually give a parallelism we don't go to a physician only when we burning with high fever or when we can't drag our feet but we also go for a runny nose or a sore throat. In the same way, we don't go to the psychologist or psychiatrist only if we are crazy because that is the word that shocks, we go even when we are feeling a little anxious" (164_129-136, M, 8YEX) Provide metaphors "While describing I might need to use an analogy, one that I often use comes to mind that the bone marrow is the factory producing the blood which circulates everywhere and the factory suffers damage" (162_75-78/F, 8YEX) Build on universal knowledge "For each person, his disease is much like a fingerprint … your disease is unique to you …" (162_106-110/ F, 8YEX) Use of pictures "I draw on the spot, the spleen, the lymph nodes, how the cells currently troubling us look like ..." (172_125-128/M,16YEX) Use of evidence "I'm trying to show them so that they understand some of the lab results or other things that concern their disease, this is a technique to exercise courage, so that they get a grip of the disease and understand what they are achieving, how they can fight it, what their results are, I do it over and over again" (173_138_142/M, 22YEX)

Provision of patient centered care
Adaptation to patient's characteristics "To a person who is advanced in age, you will choose to say a few things, when you have nothing to offer, you may not tell whole truth …" (144_33-36/ F, 7YEX) Reduction to essential information "You can see by the way they look at you that they cannot withstand a harsh word 'this is an incurable disease" (151_70-73/F, 15YEX) Gradual disclosure "Some insist on knowing from the beginning ... this is obvious and easy but when we see a reluctance to find out then we purposely leave things a little hazy and let them find out gradually" (173_95-98/M, 22YEX) Offer alliance "I always make an introduction, in the end you are going to decide and we will not proceed with something you do not want to do. Even if you decide against what I am suggesting, we won't abandon you, we'll look at alternatives we can choose from. You always assure patients of this from the beginning" (150_424-427/ F, 19YEX)

Emotional cushioning
Balance realism and hope "Speaking sincerely and giving real hope. Even for severe diseases because there are differences in survival depending on the success of the treatments. For us, these differences are meaningful" (153_99-101/ M,18YEX) Selective accentuation "I will say that we have 80% of success, you never say 20% death rate, you focus on the positive" (173_110-111/ M,22YEX) Choice of wording "In CLL, I will say 'chronic lymphocytosis' which I need to look into further…and once I have confirmed the diagnosis then I move on to the word 'leukemia' as this is what causes fear …" (143_72-80, F,25YEX) Avoidance of emotionally charged words "We say things like if his fate is such, if it is His will, if God wants to take him …" (163_147-148/ F,22YEX) Plan of action "I give patients a laid-out plan. People are relieved when you give them a plan of what they will need to do. I give them an overall perspective" (155_101-103/ F, 12YEX) In line with previous research, our study revealed that the Greek socio-cultural context powerfully impacted the disclosure process as physicians often succumbed to or complied with the family's wishes to withhold the truth from the patients (Tsoussis et al., 2013). The practice of withholding information on diagnosis or prognosis is also common in several Asian and Southern European countries, despite a global trend towards full disclosure (Ni & Alraek, 2017). Undoubtedly, disclosure of a diagnosis of hematologic cancer, relapse or uncertain/unfavorable prognosis was a source of anxiety for a lot of physicians who described not only the emotional impact on patients but also their own responses to patients' display of distress. The aforementioned factors namely fear of causing psychological morbidity, family's requests of 'do not tell', contradiction between guidelines etc. have been described in the literature to constitute reasons for non-disclosure along with insufficient communication skills training (Ni & Alraek, 2017).
In an effort to reconcile their obligation of non-maleficence and their respect for patients' autonomy, the majority of physicians resorted to partial or gradual disclosure. This is possibly due to the fact that physicians typically have a long time to establish a deep relationship with patients suffering from CLL, something not always possible in the case of other hematological malignancies. Time allows for physicians to get a better sense of their patients, for the physician-patient relationship to establish and for the communicated information to get digested. Conversely, in other cultural contexts the disclosure process is approached in very different ways. For example, in a US study analyzing communication in encounters between 236 patients with hematologic malignancy and 40 hematologists, it was found that hematologists were providing quantitative estimates of mortality and cure to patients they saw for the first time in at least half of the encounters (Alexander et al., 2012).
The current study also shed some light into the dynamics of medical decision making from the physicians' perspective. Most participating physicians expressed the view that patients' preference is often not to get involved in treatment decisions. Indeed, the complexity of illness and treatment in hemato-oncology renders patients reluctant to actively participate in medical decisions (Christie & Glew, 2017;Ernst et al., 2011;Ernst et al., 2013). However, some studies suggest that the reason behind this is that patients might be just conforming to social roles which dictate yielding to physicians' authority (Chhabra et al., 2013;Frosch et al., 2012).
Other physicians in our study reported encouraging patient involvement in therapeutic decisions because they saw this involvement as a fundamental right to autonomy, essential for treatment compliance and in accordance with the latest practice guidelines. During the past few years, the evidence for patients wishing to actively participate in therapeutic decisions has been accumulating. Nevertheless, the extent to which this is true is unclear, mainly due to the variability of research findings from around the world. In the recent literature, an Australian study reported a modest 26% of hematologic cancer survivors (n = 732) wanting an active role in treatment decision making (Carey et al., 2012), while a similar survey from the Netherlands reported a much higher 62% of hematologic malignancy patients (n = 458) wanting to be actively involved (Rood et al., 2015).
Participants in the current study revealed that they were often required to regulate patients' emotions. More specifically, physicians permitted patients to show anger or grief and strived to promote hope and optimism. Emotional regulation, namely the process of identifying, responding and/or attempting to modify emotions, is one of the most important skills in effective social interaction, essential in the healthcare context (Kafetsios et al., 2014). Patients' emotional experience during medical consultations can influence their satisfaction with the provided care, adherence and health outcomes (Hall & Roter, 2011;Street et al., 2009).
Nevertheless, research shows that patients' emotions, inherent to the cancer disease course, remain unaddressed as physicians might not be able to identify and assess them. Moreover, physicians might choose not to address them fearing they will become emotionally involved in patients' distress or that valuable time will be lost from the consultation (Merckaert et al., 2005;Pollack et al., 2007;). Oncologists often miss opportunities to respond to emotional disclosures demonstrating empathy as they are more focused in 'solving the problem' underlying patients' emotions (Hsu et al., 2012). Furthermore, since they are trained to respond to biomedical concerns, they are more comfortable reverting to a discussion on biomedical facts (Kennifer et al., 2009). Unfortunately, when intense emotions such as sadness, anxiety and fear are not recognized and treated, they can severely affect patients' quality of life in the long term (Merckaert et al., 2005). Furthermore, these feelings of sadness, anxiety and fear may cause patients to display physical symptoms or behavior which could be wrongly interpreted by physicians as CLL progression (e.g. fatigue, lack of appetite or weight loss) and drive them to erroneous decisions. None of the physicians participating in the present study had ever received formal communication training either during their basic education or their specialization in hematology. In many healthcare contexts there is a prevailing assumption that the ability to communicate is going to develop 'on the job' through the experience gained from dealing with diverse and demanding situations (Christie & Glew, 2017). However, the majority of participating physicians thought that they would greatly benefit from communication training in the form of continuing professional education, in keeping with previous studies in the Greek context (Kyriopoulos et al., 2003).
Failing to acknowledge communication skills deficiencies and address them through supportive interventions can have devastating effects for both patients and physicians. Despite the professional satisfaction they are experiencing, caring for patients with cancer can be very distressing for physicians. Formidably, they are facing life and death decisions, administering different kinds of treatment (e.g., chemotherapy, targeted agents, immunotherapy, allogeneic transplantation), keeping up with scientific advances and dealing with existential questions on a daily basis (Shanafelt & Dyrbye, 2012). It is not surprising that the burnout syndrome, characterized by emotional exhaustion, depersonalization and loss of meaning is prevalent among oncologists (Shanafelt & Dyrbye, 2012). Lack of confidence in one's communication skills due to insufficient training has been proven to contribute to oncologists' burnout (Tanriverdi, 2013). This cannot only negatively affect the quality of their life but also the quality of care they provide (Salyers et al., 2017).
In conclusion, this study revealed that physicians managing patients with CLL in Greece are very conscious of the importance of communication and its potential impact on their patients' and their own lives. They use a wide range of communication strategies which serve the diversity of communication goals they must achieve in their clinical hemato-oncology practice and betraying the multi-faceted role they hold as educators, supporters, guides and healers etc. However, currently their practice is driven primarily by their personal attitudes and 'hands on' experiences, while also heavily influenced by their individual personality and intuition. Participants' experience of these communication functions and specifically their difficulties and concerns could inform future communication interventions along with other communication functions described by Epstein and Street (2007) such as 'managing uncertainty' or 'enabling self-management'. These functions may have not featured explicitly in this study's findings however are of great importance for hematologists to learn and/or practice. Considering that pitfalls in communication are common throughout the cancer care continuum (Back, 2020), our present findings highlight the need for specific communication protocols and training that will empower physicians to overcome challenges, inherent to the nature of CLL and hematologic malignancies at large. Indeed, the validity of this qualitative study's findings could be strengthened further, through the launch of a Admittedly, this study is not without limitations. More specifically, one issue worth considering is the wide range of experience in years of participants included in the study. Since the focus of the present study was experience with CLL, we sought out to include participants reflecting the diversity of those practicing in this field in major centers in Greece in order to enrich our findings. However, we also realise that the experience of junior physicians might be somewhat different to seasoned physicians. Future work can focus on the experience and needs of young physicians whose communication style and strategies are not yet as established so that planned interventions addressing their specific needs might be even more effective. Another issue worth considering is the fact that participants drew on their experiences of interaction with patients with CLL, which has a number of distinctive characteristics, such as its chronicity, which allows clinicians to develop techniques such as gradual disclosure which are not feasible in other hematological malignancies of an acute nature. Another distinctive feature of CLL is that it might not require treatment at the point of diagnosis. However, literature shows that depression and anxiety are equally prominent in 'watchful waiting' as well as active treatment (Levin, 2006), a common experience for a number of other hematological malignancies. Therefore, although physicians shared their experiences specifically with CLL, some issues discussed, for example the process of emotional regulation, could be characterised as overarching in nature. Finally, this study is also limited by the fact that it was conducted with a national scope in mind. Indeed, the national perspective is gravely needed in order to identify specific issues in the healthcare and cultural context in question. Nevertheless, in order to overcome this limitation, ERIC is planning to explore physician-patient communication in the different countries and evaluate the specific need for communication protocols, guidelines and training.