Cancer Diagnosis: A Trauma for Patients and Doctors Alike

Abstract

The quality of communication between oncologists and patients can have a direct effect on each individual's coping mechanisms for dealing with stress, especially when dealing with the stress of a cancer diagnosis. This report applies the findings of trauma research to this aspect of oncological care.

Communicating a cancer diagnosis to a patient is always an uneasy and tense situation, no matter if you are the treating oncologist, a medical specialist, or a general practitioner. Such an encounter is greatly stressful, with the unpredictability of the patient's reaction being one reason among others. That the situation is often a traumatic experience for the patient is unsurprising. But it can also be a burden for doctors, especially for young physicians. This essay discusses whether we as doctors can benefit from the new insights of psychology on the subject of trauma. The authors (oncologist, philosopher, and psychologists) make an attempt to extrapolate findings from psychological trauma research to the situation of communicating a cancer diagnosis.

The term “psychological trauma,” first introduced to describe neuroses in soldiers exposed to extremely frightening situations, was initially defined as a reaction for which the responsibility lay within the persons themselves. The inclusion of post‐traumatic stress disorder (PTSD) in the Diagnostic and Statistical Manual 3rd Edition (DSM‐III) in 1980, including the diagnostic criterion of the “existence of a recognizable stressor that would evoke significant symptoms of distress in almost everyone,” shifted the emphasis to the scary event eliciting such a distressing psychological reaction. This largely freed individual sufferers from being responsible for their personal experience of trauma resulting from the traumatic stressor. The acceptance of PTSD by the American Psychiatric Association was in part a response to the anti‐Vietnam War movement, which portrayed the veteran as a victim of a senseless and unpopular war, but was also a product of a society that regarded the needs of the individual as vital [1], [2], [3].

The current understanding of psychological trauma is linked to the diagnostic criteria of a “traumatic stressor” that leads to trauma, which may ultimately result in PTSD or other psychological disorders, such as acute stress disorder, anxiety, or depression. The DSM‐III (1980) defined PTSD as a reaction to “a recognizable stressor that would evoke significant symptoms of distress in almost everyone” [4]. The stressor criterion has been more precisely defined in DSM‐IV (1994) as an “event that involves actual or threatened death or serious injury, or other threat to one's physical integrity” [5]. In the current version of DSM (DSM‐V, 2013), a traumatic stressor is defined as “any event (or events) that may cause or threaten death, serious injury, or sexual violence to an individual, a close family member, or a close friend” [6]. It is important to note that in DSM‐V, the subjective response as part of the traumatic stressor criterion has been removed, which objectifies the traumatic stressor criterion. Trauma itself is defined as a direct reaction to a stressor that exceeds an individual's capacity to cope or, in other words, as the vital experience of a discrepancy between threatening situation factors and individual coping mechanisms [7]. Secondary trauma, also called compassion fatigue, is defined as indirect exposure to trauma through a firsthand account or narrative of a traumatic event [8]. It is important to realize that this potentially includes the situation of oncologists communicating the diagnosis of a lethal disease such as cancer.

Following this definition in DSM‐V, a new diagnosis of cancer meets the criteria of a traumatic stressor event, as long as it poses a threat to the patient's life. Due to the high probability that the cancer finally kills the patient, it can be assumed that getting a diagnosis of cancer often qualifies as a traumatic stressor, which may well lead to a trauma. Whether the experience of receiving the diagnosis transforms into a trauma depends on several factors: among them are the prognosis of the disease, treatment options, direct or indirect experiences this patient has had with cancer, actual coping capacities of the patient including family and social support and, finally, the way the diagnosis is communicated. Although most of these factors cannot be influenced in this situation, the manner of doctor/patient communication is one of the few factors that can be adapted to suit the individual patient and, secondarily, also the doctor.

Not every trauma necessarily induces subsequent disturbances such as PTSD, acute stress disorder, anxiety, or depression. Although the quality of patient‐doctor communication likely cannot prevent the trauma, it might modulate the development of subsequent trauma disorders. There are no published clinical studies that have examined this connection, but some studies have shown that initial trauma responses are able to predict subsequent disturbances to a higher degree than the (objective) severity of the trauma [9]. In addition, peritraumatic dissociation, defined as the splitting off of clusters of mental contents from conscious awareness or the separation of an idea from its emotional significance and affect (DSM‐V), has been defined as a risk factor for later development of subsequent disturbances [10]. As a reversing circuit, it can be suggested that good patient‐doctor communication that is able to diminish or prevent the initial reactions or peritraumatic dissociation should help reduce subsequent disturbances, a point that has not yet been examined in clinical studies.

Some empirical results show the relationship between cancer and trauma‐typical acute and long‐term consequences. Clinical studies have reported that many patients experience peritraumatic distress or dissociation during the medical conversation during which a cancer diagnosis is communicated. In a study of women with breast cancer, 91% of the patients described that they had experienced at least one traumatic event related to the breast cancer disease or treatment, and 54% additionally responded with intense fear, helplessness, or horror and thus fulfilled the DSM‐IV A2 criterion [11], [12]. Acute traumatic reactions have been described as fear, anger, shame, guilt, horror, heightened physiological arousal (racing heart, sweating, shaking, etc.) and altered cognitions such as racing thoughts, inability to focus or concentrate, avoidance, etc. It is the experience of the authors that these reactions have negative effects on quality of life and they might even diminish the success of treatment itself (e.g., due to reduced therapy adherence of the patients). Conversely, patient‐centered communication and perceived self‐efficacy in patient‐physician interaction have been significantly associated with patient adherence to the suggested therapy and might diminish or prevent aversive initial reactions and long‐term trauma [13].

Although a substantial proportion of patients (41%) have reported the above‐mentioned sensations when confronted with cancer diagnosis and treatment, cancer‐related PTSD was uncommon and has been identified in only 4% of patients using DSM‐IV criteria [11]. These findings raise the question of whether the commonly used PTSD criteria are adequate and targeted in the context of not only the diagnosis but also cancer treatment. Existing literature on cancer‐related PTSD has mostly used DSM‐IV diagnostic criteria; the revised DSM‐V PTSD criteria have important implications for the assessment of cancer‐related distress and might disclose a different pattern. Furthermore, the application of PTSD diagnosis to patients with cancer has been criticized on conceptual and methodological grounds [12]. One critical aspect is that cancer treatment is not a single but a complex and repetitive traumatic event that does not just threaten the patient but ultimately ends with death. In addition, the commonly used definition of a traumatic stressor, defined as “any event (or events) that may cause or threaten death” (DSM‐V, 2013), does not entirely fit this situation. As the cancer does not go away, it is more a condition than a single event, and the awareness of the diagnosis may repetitively traumatize the patient. Also, it must be kept in mind that not only PTSD but also other subsequent disturbances such as acute stress disorder, anxiety, or depression may develop, which should be investigated as well [11]. Despite these theoretical concerns, studies using DSM‐V criteria suggest that a substantial proportion of patients experience not only their diagnosis but also the treatment as a traumatic stressor [12]. Coming back to the opening of a cancer diagnose, it has recently been reported that not only negative, but also positive psychosocial outcomes following cancer diagnosis are possible, and this phenomenon has been designated as “post‐traumatic growth.” Post‐traumatic growth, defined as a positive change or benefit finding that results from the experience of a trauma, on the one hand, and post‐traumatic stress symptoms, on the other, may be predictive of depressive symptoms and quality of life in cancer patients [14].

A trauma‐conscious society, a phrase coined by Dr. Bessel van der Kolk [3], might look at traumatized people as those with a destroyed, or at least damaged, self. Illness and sickness might lead to the experience of the breaking up of identity, from a sudden external imposition on the self of man. Confronted with a disease that is accompanied by a vital threat, an existential border experience, as existential philosophers would put it, one feels one is no longer oneself, no longer who one wants to be and no longer who one once was. Not without reason is the Latin phrase “nil nocere,” which means “do no harm,” one of the principal precepts of bioethics. But the doctor not only witnesses the patient's trauma, he/she is, in some sense, the cause of it. The way oncologists communicate with their patients is one of the few factors in cancer diagnosis that can be controlled, and it places a heavy responsibility on them. It has been shown as early as 1997 that teaching significantly improves communication skills in many aspects [15], but it is still a matter of future studies to show if acute reactions can be reduced and the later development of trauma symptoms can be prevented by appropriate communication style.

Although society might have become more trauma‐conscious concerning patients, the situation of doctors and nurses involved in the traumatizing process of giving a cancer diagnosis and cancer treatment has not yet been sufficiently studied. Two theoretical constructs of secondary traumatization have been proposed: “compassion fatigue” [16] and “vicarious traumatization” [17]. The fundamental feature of compassion fatigue is the development of trauma symptoms parallel to PTSD, such as intrusion, avoidance, and arousal, whereas vicarious traumatization involves disrupted beliefs in relation to the self, others, and the world from cumulative exposure to client trauma narratives, in addition to trauma symptoms [18]. Although there are studies involving clinical psychologists [18] and oncology nurses [19], comprehensive studies with oncologists are still missing, even though these connections might be one reason for the unacceptably high burnout/depression rate of doctors, especially in oncology [20]. Burnout, defined as the presence of emotional exhaustion and the feeling of disconnection from others, can be a result of secondary traumatization [21]. Presence of such disturbances must be detected by more experienced colleagues and timely help offered. There is need for institutional structures that help oncologists, especially younger ones, to deal with the specific stress described above [22].

We must bear in mind that the attitude toward lethal diseases such as cancer and possible life‐prolonging therapies is significantly influenced by culture and religion. Doctors cannot entirely prevent peritraumatic reactions of the patients, because they have little influence on their internal coping mechanisms nor indeed should they interfere with them. The doctor also needs to be aware that acute stress reactions may occur in a delayed fashion and not as a direct reaction to the initial disclosure of cancer diagnosis. In subsequent meetings with the patients, doctors should be sensitive enough to detect the symptoms of disturbances described above. As they have control over the way they communicate the diagnosis, they can create an environment in which patients feel safe and have a sense of autonomy [23]. This involves being sensitive and respectful toward patients while communicating the cancer diagnosis and adapting the manner of conversation if patients demonstrate acute distress reactions. If doctors are sensitive and respectful toward their patients, they will be able to guide them through the extended process of diagnosis and treatment. Such guidance involves joint decisions that best represent the patients' needs, taking into consideration their current life situations and respecting their decisions, even when they are opposed to therapy recommendations. Oncologists should also be aware that they themselves run the risk of developing secondary traumatic disturbances. The importance of self‐care to prevent/combat such responses should be included into institutional training courses on communication skills.

Conclusion

“Trauma” is defined as a direct reaction to a stressor that exceeds an individual's capacity to cope or as the vital experience of a discrepancy between threatening situation factors and individual coping mechanisms, whereas “secondary trauma” is defined as indirect exposure to trauma through a firsthand account or narrative of a traumatic event. Whereas the first applies to patients, the latter is true of oncologists who have the task of delivering the bad news of a lethal diagnosis. Whether the trauma results in subsequent disturbances such as PTSD, acute stress disorder, anxiety, or depression, or in the case of secondary trauma, in compassion fatigue, intrusion, avoidance, or even in disrupted beliefs in relation to the self, others, and the world, depends on many factors. The conditions of patient‐doctor communications and the way physicians communicate with their patients belong to the few factors that can be controlled. Although the quality of patient‐doctor communication can probably not prevent the trauma, it might modulate the development of subsequent trauma disorders. This essay should be an encouragement to include the findings and developments in trauma research in other professional fields into modern concepts of oncological care.

Disclosures

The authors indicated no financial relationships.