‘And once again his thoughts dwelt on his childhood, and once again that was painful for Ivan Ilyich, and he tried to banish those thoughts and think of something else’ (p. 204).
Reproduced from Leo Tolstoy, The Death of Ivan Ilyich and Other Stories, Translated by Nicolas Pasternak Slater and Edited by Andrew Kahn, Oxford World’s Classic, Oxford University Press, Oxford, UK, Copyright © 2015, with permission from Oxford University Press.
Introduction to denial and communication
Patients who appear not to acknowledge the diagnosis of an illness, or its gravity, are said to be ‘in denial’. A patient’s history readily illustrates this in Box 16.1.
Denial is considered a common reaction, especially when an illness is life-threatening. After being told of the diagnosis of terminal cancer, approximately 20% of patients deny they have cancer, 26% partially suppress awareness of impending death, and 8% demonstrate complete denial (Greer 1992). A meta-analysis suggested that the prevalence of denial of the cancer diagnosis ranged from 4 to 47%, and denial of negative affect from 18 to 42% (Vos and De Haes 2007).
Although the term ‘denial’ is an accepted part of the medical vernacular, it is used in a variety of clinical circumstances, with varying definitions and little consensus. Furthermore, as with all of the body’s defences—physiological, immunological, psychological—denial can become maladaptive.
This chapter will establish a pragmatic view of denial, explore how it functions within the clinician–patient relationship, and then demonstrate when intervention is appropriate and how that intervention is best undertaken. Specific attention will be given to the communication skills required for an effective clinical response to denial.
The term denial has not acquired a monolithic meaning—that is, there is no common agreement as to when and how to use the word. Psychoanalysts describe it as one of several cognitive defence mechanisms, which serve to protect a person against anxiety. A patient demonstrates denial by refusing (self-aware) or being unable (unaware) to acknowledge some painful aspect of reality or emotion that would ordinarily be apparent to self or others. The term psychotic denial is used when there is, in addition, gross impairment in reality testing (see Box 16.2).
Throughout the medical literature, the construct of denial has been used to describe anything from illogical behaviour and non-compliance, to the patient’s pretence to family that all is well, to non-integration of medical information into the patient’s worldview (Vos and De Haus 2007). To make matters more complicated, there is also denial as a specific clinical sign associated with neurological damage (Ellis and Small 1993). This can lead to confusion and uncertainty as to how to manage denial. The importance of defining denial, or at least setting functional parameters, is to enable management. The key to management of denial is thoughtful communication.
How should we define denial? The term ‘denial’ is applied to patients who, consciously or unconsciously, alleviate their anxiety (primarily directed at death or pain) by portraying a serious health situation as either exaggerated or non-existent (Cousins 1982). Why do people deny? One answer is that the human brain is designed to enable it to accommodate practically any trauma that it confronts. When an event is too difficult or painful to integrate immediately, denial is used as a coping mechanism, as a self-protective buffer. Sometimes this defence mechanism is adaptive, and sometimes maladaptive. An analogy for how it becomes a morbid process might be drawn to the body’s immune system, to diseases that fail to distinguish self from non-self. Furthermore, denial is dynamic—it comes and goes ‘at will’, as needed. Factors that influence the presentation of denial include level of anxiety (primarily of death), the passage of time (Zimmermann 2004), professional relationships, and stage of disease. The clinician’s job is to assess whether denial is adaptive or not, and avoid harm to the patient whenever possible.
We propose conceptualizing denial as a spectrum (see Fig. 16.1). The key variables are:
1. the degree to which the patient is aware of their denial; and
2. how effectively the denial functions in striking a balance between subjective fear and the threat of illness.
At one end of the spectrum, when a person consciously avoids discussion of an upsetting experience, his or her active avoidance can facilitate an adaptive outcome by minimizing the seriousness of a concern so that the focus is sustained on hopeful optimism. However, when anxious procrastination leads to delayed investigation or treatment of any condition, the potential for a morbid outcome increases. At the other end of the spectrum, disavowal involves disclaiming knowledge about or understanding of the existence of a condition or its seriousness. In the psychoanalytic use of the word ‘disavowal’, the splitting off of an unwelcome trauma is employed to unconsciously deny that it ever existed. At the heart of this process of subconscious disavowal is the potential for maladaptive outcomes, because of the primitive blocking of awareness that occurs.
Denial in the clinical environment
To help us understand the clinical application of denial, we will examine four clinical contexts in which denial is seen:
3. clinician’s complicity; and
4. familial and cultural.
Denial as beneficial
Denial functions as a form of self-protection, and there is some evidence that it may be beneficial in patients with life-limiting illness. Longitudinal studies of breast cancer patients showed that those patients who denied the seriousness of the cancer diagnosis experienced significantly less mood disturbance than those with ‘acceptance’ coping styles (Watson et al. 1984). Denial was negatively correlated with anxiety in adult cancer patients (Vos and De Haes 2007), and positively correlated with good adjustment in survivors of childhood cancers (Greer 1992). Denial may also lead to patients experiencing fewer physical complaints, and it may have a positive effect on function (Vos and De Haes 2007). Longitudinal studies of a cohort of patients with lung cancer suggested that denial facilitated better social outcomes and less anxiety and depression (Vos et al. 2011), better overall perception of health, improved physical function, and lower symptom burden (Vos et al. 2010).
Furthermore, the use of denial as a coping strategy may be predictive of a more favourable disease trajectory (Garssen 2003). In a 15-year prospective study of adjustment styles in breast cancer, Greer and colleagues (1990; 1992) followed a group of non-metastatic breast cancer patients at 5, 10, and 15 years following surgical intervention. Women who used fighting spirit or denial as coping strategies survived longer than those who reacted with stoic acceptance or helplessness. An overall trend in meta-analysis suggested a positive relationship between denial and survival (Garssen 2003), although it is possible that a negative survival outcome from hopelessness-helplessness underlies this finding. Active minimization has also been associated with longer survival (Brown et al. 2000).
Then there is the question of denial in the service of hope. Druss and Douglas (1988) correlated healthy denial with optimism and resilience, where what was being denied was not the disease or infirmity itself, but rather the fearful implications and emotional impact. Patients may interpret what they are told about their condition according to the fear they experience or the hope they wish to maintain. In studies of hospital patients interviewed with a diagnosed but undisclosed malignancy, 88% suspected they had cancer on admission, but 68% had no wish to augment that knowledge (McIntosh 1976). Patients used denial to both maintain uncertainty and to support hope. This relationship to hope has also been explored in the coping strategies used by family members and loved ones (Benkel 2010).
However, denial can also be detrimental. In spite of the success of public screening for certain cancers, denial still contributes to late clinical presentation (Zervas et al. 1993). Denial creates a barrier between clinician and patient, which can reduce effective communication (see Box 16.3). This in turn effects the patient’s ability to make informed health choices and, in extreme cases, to poor compliance with treatment. Denial may prevent patients from preparing for death, both pragmatically and psychologically; and lead to complicated grief in the bereaved (Watson et al. 1984). It can appear as an obstacle to open discussion of death, dying at home, stopping ‘futile’ treatments, advanced care planning, and symptom control (Zimmerman 2007).
Clinician’s complicity with denial
Traditionally, the term denial has been applied to patients; however, the clinician is not immune from denial as part of the therapeutic relationship (Helft 2005). A physician may deny prognostic information to patient or family, thereby encouraging hope (Cousins 1982). The continuation of ineffectual chemotherapy, use of subtherapeutic dosing, or the exaggeration of the length of survival are three examples of clinicians employing denial. For instance, rather than promote acceptance of natural processes of dying in the face of terminal frailty from advanced cancer, a clinician’s suggestion that cardiopulmonary resuscitation may be beneficial can precipitate intubation and ventilatory support in the intensive care unit, in place of the more emotionally demanding conversation about the reality of impending death.
Denial by physicians may be employed as part of their defences against the difficult feelings evoked by their work, including any sense of mortal vulnerability. While these defences are protective, they can seriously hamper communication. This can be characterized by emotional distancing, detachment, intellectualization, nihilism, or even aggression. In turn, this may affect the patient’s adherence to treatment, pain control, information recall, preparation for dying, and overall satisfaction with care (Favre 2007).
Family’s complicity and cultural context
Some families use denial to cope with the patient’s illness. Tacit agreement between family members to ‘deny’ illness can appear as ‘mutual pretence awareness’. At times it can be distressing or detrimental for the patient, particularly when communication patterns are disturbed, leading to anxiety, isolation, and suspicion. Cultural and religious variance has a significant impact on the use of denial as a psychological mechanism of coping (Gall 2004; Chan et al. 2005; Travado et al. 2005). Many societies—Japanese, Chinese, and Indian—are evolving from a past avoidance of prognostic discussions to more open and direct communication about the clinical reality. To what extent should clinicians respect these variances, and ‘allow’ ongoing denial? Box 16.4 illustrates the potential for futile medical care to be administered through collusion with a family’s process of denial. At its most extreme, futile care could lead to extended suffering and prolonged dying from advanced cancer in the intensive care unit.
A ‘functional’ or clinical approach to denial
When should denial be broached? Only when it is causing self-harm? Or when it is judged that denial is blocking acceptance? What role do cultural or individual values play?
Clinicians need a functional definition of denial. Denial scales have been trialled in various studies without much success, but perhaps the most effective way to view denial is dimensionally, as displayed in Figure 16.1. At one extreme is completely subconscious disavowal, and at the other, active forgetting. Elements of denial are evident within each of the labelled domains in this spectrum. Patients’ level of denial may fluctuate and move from one domain to the other, depending on the patient’s perceived—conscious or not—level of threat. However, only certain domains in certain circumstances require active intervention.
Role of patient’s self-awareness
Denial is often assumed to be by definition unconscious, in contradistinction to more ‘healthy’ coping mechanisms, such as minimization or positive avoidance, in which there may be some self-awareness. Nevertheless, elements of denial in minimization and avoidance are recognizable and these coping mechanisms should be integrated into the dimensional nature of denial. Active forgetting involves consciously setting aside, suppressing, or pushing into the background information that is too painful, as in the epigram from Tolstoy. Clinicians do well, for example, to promote active avoidance of any fear of recurrence when patients are about to undertake routine re-staging imaging. Adaptive coping is the desirable outcome here.
Role of context
The central question is whether denial is functioning in a beneficial or a maladaptive way. Adaptiveness is judged by how well a person can cope with the practicalities of the illness (and its implications) despite anxieties and fears. Thus, if the denial is accompanied by self-harm or neglect, it could reasonably be labelled as maladaptive and require healthcare intervention. The definition of ‘self-harm’ is relative and requires the prudent judgement of the healthcare team. Broad parameters include: non-compliance; unrealistic expectations by patient or family regarding goals of care; damage to relationships with family and loved ones (Helft 2005); and inability to find ‘closure’.
‘Acceptance’ is not always necessary. Patients may die without ever acknowledging the full extent of their illness or the imminence of death. In these cases, the priority is symptom control—physical, emotional, and spiritual—notwithstanding denial. There is no rationale for intervening in cases of benign or adaptive denial by forcing acceptance upon patients, as this may only serve to increase distress and, indeed, may not be ethically prudent.
The insightful clinical response
Denial is a response to fear, typically of death. The expression of denial depends on personality, coping styles, degree of self-awareness (‘I’m not going to think about it any more’) and the extent to which the patient can manoeuvre their illness pathway through the healthcare system. It ranges on a spectrum from beneficial coping to maladaptive self-harm. The best approach is to develop a ‘feel’ for their coping style, support the patient, and note the balance between fear and adaptation. Generally, a trusting relationship and good communication will be all that is required to allow the patient to open up and ‘let go’ of denial.
Communication with patients using denial
Although there are no empirical studies exploring the best way for a physician to challenge denial in their patient, physicians are not always confident of their communication skills in dealing with denial (Travado et al. 2005). When ‘breaching’ the defence of denial, often an indirect approach is best. Given that denial functions as a response to a fear (of death), then by shoring up a person’s self-esteem, dignity, morale, and life’s meaning, the fear will likely recede and denial will commensurately cease to have a function. The following recommendations are a compilation of findings based on case study reviews and expert opinion (Maguire and Pitceathly 2003; Schofield et al. 2003; Hudson et al. 2006; Owen and Jeffrey 2008) about communication in the face of denial:
◆ Exclude neuropathology, misunderstanding, or inadequate information.
◆ Determine whether denial is maladaptive or adaptive.
◆ Determine whether denial requires management.
◆ Explore emotional background to fears.
◆ Provide information tailored to the needs of the patient and clarify goals of care.
◆ Be aware of cultural and religious issues and respond sensitively.
◆ Monitor the shifting sand of denial as the disease progresses.
These strategies, together with their related communication skills and process tasks, are outlined in Table 16.1.
Table 16.1 Strategies and communication skills to use in response to denial
1. Recognize the presence of denial, and exclude misunderstanding, neuropathology, or misinformation
2. Determine whether it is maladaptive or adaptive for the given circumstance
3. Provide information tailored to the needs of the patient
Clarify the patient’s preference for information and decision-making, including goals of care
4. Explore emotional reactions and respond with empathy
6. Follow up and monitor denial in context as disease progresses
Reinforce joint decision steps
‘I understand that this is how you feel about your illness currently. I would like us to meet again in … just to check how things are going, and discuss things a little further.’
Denial can be a temporary, adaptive coping mechanism to help a person deal with a difficult and usually frightening new circumstance. Generally, it is best to support the patient’s method of coping with their illness. Where denial is seen to function in a maladaptive way, however, it may be necessary to tackle and expose the denial, albeit with care and wisdom.
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