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  In this Article
 »  Abstract
 »  Introduction
 »  Definitions
 »  Types of Denial
 »  Factors Associat...
 »  Denial as a Dyna...
 »  Situational Fact...
 »  Impact of Denial...
 »  Denial Related t...
 »  Cultural Issues ...
 »  Managing Denial
 »  Denial as a Right
 »  Conclusions
 »  References

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REVIEW ARTICLE
Year : 2007  |  Volume : 13  |  Issue : 1  |  Page : 8-14

Denial as an experiential phenomenon in serious illness


Department of Psychiatry, NIMHANS, Bangalore, India

Correspondence Address:
Prabha S Chandra
Prof. of Psychiatry, NIMHANS, Hosur Road, Bangalore - 560 029
India
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Source of Support: None, Conflict of Interest: None


DOI: 10.4103/0973-1075.37184

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 » Abstract 

Denial is a commonly encountered concept in clinical practice for those dealing with serious illnesses. It has a myriad of meanings and definitions. It has been considered to be both positive as well as negative in clinical situations. Various factors affect denial including demographic, types of illnesses and cultural background. Management of denial has become an important issue in dealing with serious medical illness and terminal illness as it may interfere with treatment. This article focuses on the definitions of the concept, factors related to denial, and assessment and management of denial.


Keywords: Denial, terminal illness, end of life, palliative care


How to cite this article:
Chandra PS, Desai G. Denial as an experiential phenomenon in serious illness. Indian J Palliat Care 2007;13:8-14

How to cite this URL:
Chandra PS, Desai G. Denial as an experiential phenomenon in serious illness. Indian J Palliat Care [serial online] 2007 [cited 2020 Aug 6];13:8-14. Available from: http://www.jpalliativecare.com/text.asp?2007/13/1/8/37184


At the approach of danger there are always two voices that speak with equal force in the heart of man: one very reasonably tells the man to consider the nature of the danger and the means of avoiding it; the other even more reasonable says that it is too painful and harassing to think of the danger, since it is not a man's power to provide for everything and escape from the general march of events; and that it is therefore better to turn aside from the painful subject till it has come and to think of what is pleasant. In solitude a man generally yields to the first voice; in society to the second.

- Leo Tolstoy, War and Peace


 » Introduction Top


Denial is an important and complex psychological concept. It has been in use with various conceptual meanings. It is also one of the common reasons for referral to psychiatric consultations. Denial may mean that:

  1. Patients do not accept their diagnosis or are oblivious to it.
  2. The patient minimizes the symptoms of illness or does not seem to appreciate its implications.
  3. The patient avoids or delays treatment.
  4. The patient appears to have no emotional reaction to the diagnosis or illness.
  5. The patient refuses or does comply poorly with treatment. [1]



 » Definitions Top


The theoretical framework in which it is examined influences the definitions of denial. The term denial was first used in psychoanalytical theory. Freud A. [2] described denial as a defence mechanism that has the goal of reducing unpleasant affects by means of disavowing the reality. She described denial in the context of children and psychotic individuals. Based on this conceptualization, denial was viewed as pathological for many years.

Later, in the cognitive, stress and coping theories, denial was seen as a mechanism to escape consciously or unconsciously from painful events or feelings. According to Dorpat's [3] cognitive arrest theory of denial, denial arises as a result of preconscious appraisal of danger or trauma and the experience of a subjectively painful or distressing affect. Horowitz [4] described the self-protective function of denial. According to him, denial can be a normal phenomenon though an often temporary response to overwhelmingly stressful and disruptive situations.

In the clinical framework, Weismann and Hackett [5] defined denial as a conscious or unconscious repudiation of part or all of the total available meanings of an event to allay fear, anxiety or other unpleasant affects. It was also considered to be a conscious negation of a perceived external threat. This definition is widely used in understanding denial.

Most commonly, attention has been focused on patients' verbal repudiation of minimization of their diagnosis, its implications or a perceived lack of affective response. It has been argued that denial is not a unitary concept but is composed of a number of related components. Denial has also been described to be normal, healthy and adaptive, [6] and hence contradicts the classic definitions of denial.

As can be observed from different definitions, denial has several aspects, and depending on one's theoretical stance, denial may mean different things to different people. Hence it is important that, while using the term to describe it, there is a clear communication regarding its meaning and context.


 » Types of Denial Top


Denial has been described as consisting of various related components. Several authors have categorized denial in various dimensions. Denial can be primary, secondary or tertiary. In primary denial, there is repudiation of facts of illness or the diagnosis itself. In secondary denial, there is repudiation of treatment or implications of symptoms and treatment. In tertiary denial, there is denial of long-term prognosis and outcome, including the possibility of death. [7] Weinstein and Kahn [8] have discussed denial as being explicit or implicit. Explicit denial is associated with direct negations of disability in words, whereas, in implicit denial, the person is withdrawn, passive or inattentive.

Denial has also been described under the following components - denial of illness, denial of impact on future, denial of need for care and denial of affect. These components demonstrate that the dimensions differ mainly in what exactly the patient is thought to deny. [9]

Prevalence

Denial has been described in relation to various serious medical illnesses. The prevalence rates have been reported to be highly varying as different authors use different definitions of denial. Few studies reported the positive effect of denial in subjects with heart disease, [10] end-stage renal disease [11] and breast cancer. [12] On the other hand, several studies have demonstrated the negative and neutral effects of denial. [13],[14],[15]

In a recent review of denial in cancer, the prevalence of denial of diagnosis in cancer patients ranged from 4% to 47%, denial of impact occurred in 8%-70% and denial of affect in 8%-42% of patients. [16] A study conducted in a general hospital in India reported that one-third of a sample of 60 cancer patients were unaware of the diagnosis, and those who were unaware of their diagnosis of cancer had lesser psychiatric comorbidity than subjects who were aware of their diagnosis. [17]

Since denial varies with the type of illness, stage of illness and definitions used, the prevalence rates also vary considerably.


 » Factors Associated with Denial Top


Several factors may be associated with denial, including background characteristics, illness types, cultural factors and personality related factors.

In studies with cancer patients, the relationship between age and denial shows a trend of younger people denying more often than older people. Gender differences have not been found to be significant. The type of cancer and its relationship to denial has shown inconclusive results.

Assessment of denial and its differential diagnosis

Denial is increasingly being recognized as a multidimensional components with several inde-pendent concepts. However, because it is the very fact that it is denied, - it is difficult to measure. This was, however, not so in the early stages of work in this area. Hackett, [5] one of the pioneers in the area, who also gave the earlier quoted definition of denial, viewed denial as a predominantly affective response. For example, major deniers were those who reported no fear when in a threatening situation; partial deniers were those who reported some fear after and during initial period of denial; and minimal deniers reported feeling fearful quite easily.

Unitary definitions, with Yes/No answers to a single question, dominated denial-related research for long, until Havik and Maeland [18] , who described three dimensions in relation to coronary heart disease. These included denial of illness, denial of impact and suppression (avoiding thinking about it).

Subsequently, Levine et al. [19] developed the Levine Denial of Illness Scale (LDIS), which has now been tested and factor-analysed in different populations.

Jacobsen and Lowery, [9] in their work among patients with myocardial infarction, arrived at five factors of denial, which amply describe the multidimensional facets of the concept.

The factors included cognitive denial of illness (denial of diagnosis, misattribution of symptoms and minimization of illness). For example, a patient might deny having cancer, and say that his symptoms are due to another milder form of illness (e.g. spondylosis or indigestion), or minimize the effect ("it will go away; it is not anything serious").

The second factor described was denial of impact on the future. These included denying vulnerability ("I will be fine in the next few days"), unrealistic planning (a person just recovered from MI planning to go on a hiking trip soon after discharge from hospital), unrealistic optimism ("you will see me back fit as a fiddle in the next few weeks"), denial by humour (laughing it off or cracking jokes about his/her health), detachment from illness (not asking questions of the doctor or not being concerned about treatment issues).

The third factor is unrealistic expectations from care, which includes lack of confidence in the physician, dissatisfaction with care and/or excessive dependence.

The fourth factor, which is probably the most important in needing quick intervention, is the denial for need of care. Here, the person may ignore health problems (ignoring a breast lump, not attending check-ups, poor treatment adherence); denial of extended treatment and non-cooperation with care. Such groups of patients are often described as difficult patients and are a source of frustration to the doctors and nurses.

The final factor of denial, which led to the original description by Anna Freud, [2] is affective denial or denial of feelings related to the illness. It includes denial of sadness or depression (normally one expects sadness that is realistic and understandable), denial of anxiety (false bravado even in the most threatening of situations), denial of fear of death ("Oh, it will come to someone any day; it is the most certain thing in one's life") and overt signs of tension accompanying any of the feelings.

The third factor (unrealistic expectations from care) on factor analysis had the least conceptual relationship to the overall concept of denial as it was dependent on several other measures.

Clinical approach to assessment: While the above paragraphs describe some of the formal measurement methods, it is important to build in the above concepts into clinical assessment as well.

Some simple questions that will help in arriving at some idea on the above four factors include - What do you know about your condition? What have you thought about how you will plan the future (after surgery, after discharge)? How do you feel about your current illness? What is your understanding about the seriousness of your condition? How worried/concerned are you?

Once the doctor or nurse gets an idea about the nature and level of denial, further questions can be asked to assess the degree of denial in each of these areas.

Observational issues: Nurses usually observe some forms of denial in patients like nonchalance, noncompliance, insisting on being independent even when unable to do so, avoiding meeting relatives or talking about the illness, cracking jokes when nurses check BP/investigations/wound. Some others include not asking the nurse or doctor any questions about their condition and even when asking, framing questions in an overly positive or optimistic manner. For example, I am sure my tests are normal; I will be able to get discharged very soon, wont I? These are some observations that hint towards denial.

Points in history: Coming late for assessments, missing appointments, denying pain or interventions for pain, undermining seriousness even when obviously suffering, refusing to listen to family members' concerns about regular check-ups are points in history to be noted.

Differential diagnosis of denial: Denial needs to be differentiated from avoidance, which is a conscious decision of keeping some issues private and not wishing to discuss it. It might, however, indicate denial of affective response and denial of impact. Suppression is also considered to be a conscious defence where a person chooses to suppress some thoughts and feelings that are unacceptable to him or her.

There has been some debate on whether denial is a personal choice rather than an unconscious mechanism. While classic texts prefer to use the more psychoanalytical concept of denial as being entirely unconscious and hence amenable only to psychoanalytic therapy, current approaches at understanding denial affirm that it is at least partly conscious, and occasionally individuals may choose to be 'in denial'. Several authors laud this approach and feel that this will make it more amenable to counseling and to less intensive forms of psychotherapy. [20]

True lack of awareness may also mimic denial. Very often, doctors and nurses may be vague, nonspecific and unclear in their discussions. Hence patients might not be truly aware of their conditions and, when questioned by others, may deny complete knowledge about their seriousness.


 » Denial as a Dynamic Concept Top


Denial has always been considered to be temporary and acts as a buffer before better coping patterns set in as described in popular texts on death and dying - "Denial functions as a buffer after unexpected shocking news, allows patients to collect themselves and with time mobilize other less rational defenses." [21]

Denial in any serious illness may happen at various points and wax and wane with time and other situational factors. Some key situations when denial happens are: before diagnosis (when being investigated), when diagnosis is disclosed or there is a hint of seriousness in the condition, if relapse happens, when in severe emotional or physical distress, when severe physical disability is imminent and when the patient becomes aware that death may be near.

Most people eventually learn to accept their condition and are able to discuss it; however, several others may never completely have the emotional energy to overcome denial.


 » Situational Factors Related to Denial Top


Often collusion in families and among health professionals can promote denial. Families may insist that the patient does not learn about the illness and perpetrate the denial myth. Health professionals may not ask, enquire about feelings and beat around the bush and, if the patient does not volunteer or discuss some issues, may conclude that the patient is in denial.

Sometimes, if a health professional does not accept that there are situations where medicine may not be able to cure, anxiety related to the failure of self or failure of medicine may cause denial in the health professional, which might contribute to the faulty assumption of denial in the patient.


 » Impact of Denial on Physical and Psychological Health/Help Seeking Top


Initial denial is often eventually replaced by integration of knowledge about the illness and by the adoption of more flexible coping. Since help seeking and compliance with treatment are the most important factors for patients' well-being and survival, persistent, extreme denial that delays treatment is considered maladaptive and needs intervention.

Some studies indicate that denial improves physical functioning, while others indicate that it worsens. [16] More studies are currently needed to systematically assess the impact of denial on physical functioning independent of treatment compliance.

A recent review [16] has examined most of the recent research in the area of denial and psychological functioning. The authors conclude that the results vary in different populations, depending on the nature of denial (denial of impact vs. denial of affect) and at different stages of illness. The review also hints at the psychological state varying with the concept of denial used. Choosing active strategies like not allowing cancer to control one's life or having a positive outlook were associated with better functioning, while more passive denial behaviours such as giving up, hoping for a miracle and smoking were associated with a poor outcome.

While there are no studies on denial from India, several researchers have assessed the awareness and knowledge of cancer and its relationship to psychiatric morbidity. Chandra et al [22] assessed depression and anxiety among patients with cancer who reported being aware of diagnosis and compared it to psychological morbidity in those who were unaware. Of the 294 patients studied, nearly half reported not being aware of their diagnosis. However, there was no difference in psychological morbidity between the two groups.

In contrast, Alexander et al. [17] found in their sample of cancer patients that those who were aware had higher psychological morbidity. The above differences may be due to methodological issues in studying awareness. One has to rely on self-report of awareness by patients, which may not be a true reflection of whether an individual is really aware of his or her condition and its implications. This is related to the fact that some patients might be partially aware but may not want to commit; different degrees of denial might be operating and acceptance of knowledge may also be related to their comfort level with the assessor.

More research is obviously needed, in different cultures, with varying methods of assessing denial (both direct and indirect) and in contexts that have different approaches to truth-telling.


 » Denial Related to Death Top


Death is a universal threat, and when it becomes a probability, a device is needed to prevent the intrusion of the fearful meaning of death into the patient's consciousness. Characteristically, the dying patient's initial reaction is denial. [23] Denial is a concept commonly used in the terminally ill. The awareness of dying has been studied intensively in terminally ill subjects, and it has been argued that awareness of dying enables life planning to proceed and offers a hope to provide some form of control over the manner and timing of death. Cultural beliefs regarding death-related issues might affect the awareness of dying. Glaser and Strauss [24] have given a four-point typology on the awareness of dying.

Open: both dying person and relatives know that the person is dying

Suspicion: the dying person suspects

Pretence: Either or both pretend that they are unaware that the person is dying

Closed: knowledge of dying is hidden from the dying person

A study using discourse analysis of death denial found that it as an impediment to openly discuss dying, dying at home or stopping futile treatments, advance care planning and control of symptoms. [25]


 » Cultural Issues in Denial Top


While earlier studies in the West reported increased rates of closed awareness of dying, recent reports from the UK [26] describe that increased rates of open awareness of dying have become acceptable. This may be due to more open communication between the physicians and patients. The issues of patient's autonomy have also been addressed more frequently recently. While in the West the awareness of dying is showing a trend towards open awareness, the same is not seen in other parts of the world. A study conducted on terminal liver cancer patients in Japan [27] reported that 67% of the subjects died without being informed about their diagnosis. They passed through the psychological stages of anxiety, suspicion and denial, certainty, preparation and acceptance. These studies highlight the need to look into the cultural aspects of communication related to death and their impact on denial. Similar findings have been reported from India, as described earlier.


 » Managing Denial Top


While denial may be adaptive in reducing distress, it may be maladaptive in situations where, because of lack of anxiety, patients do not seek help, delay treatment or do not adhere to treatment. Patients use denial when truth is too painful to bear. Hence denial should not be challenged unless it creates distress and problems to the patient or the relative. Because denial can also prevent honest communication and resolution of important practical issues, relatives may request for help as well.

It is important to challenge denial gently so that the fragile defences are not disrupted. Maguire and Faulkner [28] have suggested strategies, which include restating the problem, looking for inconsistencies between the patient's experiences and perceptions or to look at other cues that may help the patient acknowledge that he or she has a serious illness. These methods might help in shifting the patient from denial to partial or occasionally complete awareness.


 » Denial as a Right Top


Several authors have emphasized the need to view denial as a personal choice and the importance of the 'other' in labelling denial. Based on this view, the patient is not aware of the denial and chooses to use this method for coping with distress. Some authors in the field believe the label of a 'denier' to be a medical viewpoint and discuss that it serves little for the individual patient.

Regardless of these differing views, it is evident that we cannot deny the importance of denial for patients, health care professionals, families and the treatment.


 » Conclusions Top


Most of those dealing with severe illnesses accept that denial is a commonly encountered situation in clinical practice, which often puts the health care provider in a dilemma. One would frequently ask oneself whether it is necessary to break or confront denial, and whether it is helpful or damaging. It is also a common situation that, when we use the term denial, it may mean any of the several definitions, descriptions and dimensions of denial described earlier. Hence, it is important that denial be described with more precision and in a language that communicates what is really happening with the acceptance of illness or related emotions.

More research with improvized definitions, methodological rigour and with different sample sizes of patients is needed to understand this complex phenomenon better. In India, research on psychological aspects of palliative care and in serious illnesses is still in its infancy. It is important to investigate and discuss denial and its associations to improve communication patterns between health care providers and patients. It will also be a window to peep into the minds and conceptualizations of death and illness among those we serve and help us in understanding them better.

The worst lies are the lies we tell ourselves. We live in denial of what we do, even what we think. We do this because we are afraid.

Richard Bach

 
 » References Top

1.Goldbeck R. Denial in physical illness. J Psychosom Res 1997;43:575-93.  Back to cited text no. 1  [PUBMED]  [FULLTEXT]
2.Freud A. The Ego and the Mechanisms of Defence. Hogarth: London; 1961.  Back to cited text no. 2    
3.Dorpat TL. The cognitive arrest hypothesis of denial. Int J Psychoanal 1983;64:47-58.  Back to cited text no. 3  [PUBMED]  
4.Horowitz MJ. Psychological response to serious life events. In : Brenitz S, editor. The Denial of Stress. International Universities Press: New York; 1983. pp. 129-59.  Back to cited text no. 4    
5.Weismann AD, Hackett TP. Predilection to death: Death and dying as a psychiatric problem. Psychosom Med 1961;23:232-56.  Back to cited text no. 5    
6.Druss RG, Douglas C. Adaptive response to illness and disability. Gen Hosp Psychiatry 1988;9:53-7.  Back to cited text no. 6    
7.Weismann AD. On Dying and Denying: A Psychiatric Study of Terminality. Behavioural Publications: New York; 1972.  Back to cited text no. 7    
8.Weinsten EA, Kahn RL. Denial of Illness: Symbolic and Physiological Aspects. Thomas SS: Springfield, IL; 1955.  Back to cited text no. 8    
9.Jacobsen BS, Lowery BJ. Further analysis of the psychometric properties of the Levine Denial of illness scale. Psychosom Med 1992;54:372-81.  Back to cited text no. 9  [PUBMED]  
10.Julkunen J, Saarinen T. Psychosocial predictors of recovery after a myocardial infarction: Development of comprehensive assessment method. Ir Psychol 1994;15:67-83.  Back to cited text no. 10    
11.Fricchione GL, Howanitz E, Jandorf L, Kroessler D, Zerva I, Woznicki RM. Psychological adjustment to end-stage renal disease and the implications of denial. Psychosomatics 1992;33:85-91.  Back to cited text no. 11    
12.Greer S, Morris T, Pettingale KW, Haybittle JL. Psychological response to breast cancer and 15 year outcome. Lancet 1990;335:49-50.  Back to cited text no. 12  [PUBMED]  
13.Bleeker JK, Lamers LM, Leenders IM, Kruyssen DC, Simoons ML, Trijsburg RW, et al. Psychological and knowledge factors related to delay of help-seeking by patients with acute myocardial infarction. Psychother Psychosom 1995;63:151-8.  Back to cited text no. 13  [PUBMED]  
14.Friedman LC, Nelson DV, Baer PE, Lane M, Smith FE. Adjustment to breast cancer: A replication study. J Psychosoc Oncol 1990;8:27-40.  Back to cited text no. 14    
15.Freidman LC, Baer PE, Lewy A, Lane M, Smith FE. Predictors of psychosocial adjustment to breast cancer. J Psychosoc Oncol 1988;6:75-94.  Back to cited text no. 15    
16.Vos MS, de Haes JC. Denial in cancer patients: An explorative review. Psychooncology 2007;16:12-25.  Back to cited text no. 16  [PUBMED]  [FULLTEXT]
17.Alexander PJ, Dinesh N, Vidyasagar MS. Psychiatric morbidity among cancer patients and its relationship with awareness of illness and expectations about treatment outcome. Acta Oncol 1993;32:623-6.  Back to cited text no. 17  [PUBMED]  
18.Havik OE, Maeland JG. Dimensions of verbal denial in myocardial infarction: Correlates to 3 denial scales. Scand J Psychol 1986;27:326-39.  Back to cited text no. 18  [PUBMED]  
19.Levine J, Warrenburg S, Kerns R, Schwartz G, Delaney R, Fontana A, et al . The role of denial in recovery from coronary heart disease. Psychosom Med 1987;49:109-17.  Back to cited text no. 19  [PUBMED]  
20.Zimmerman C. Denial of impending death: A discourse analysis of palliative care literature. Soc Sci Med 2004;59:1769-80.  Back to cited text no. 20    
21.Elizabeth Kubler-Ross. On Death and Dying. McMillan: NewYork; 1969.  Back to cited text no. 21    
22.Chandra PS, Chaturvedi SK, Channabasavanna SM, Kumar GS, Kumar A, Subbakrishna DK, et al. Awareness of diagnosis and psychiatric morbidity among cancer patients: A study from South India. J Psychosom Res 1998;45:257-61.  Back to cited text no. 22    
23.Friel PB. Death and dying. Ann Intern Med 1982;97:767-71.  Back to cited text no. 23  [PUBMED]  
24.Glaser BG, Struass AL. Awareness of Dying. Aldine: Chicago; 1965.  Back to cited text no. 24    
25.Zimmerman C. Death denial: Obstacle or instrument for palliative care? An analysis of clinical literature. Sociol Health Illn 2007;29:297-314.  Back to cited text no. 25    
26.Seale C, Addington-Hall J, McCarthy M. Awareness of dying: Prevalence, causes and consequences. Soc Sci Med 1997;45:477-84.  Back to cited text no. 26  [PUBMED]  [FULLTEXT]
27.Maeda Y, Hagihara A, Kobori E, Nakayama T. Psychological process from hospitalization to death among uninformed terminal liver cancer patients in Japan. BMC Palliat Care 2006;5:6.  Back to cited text no. 27  [PUBMED]  [FULLTEXT]
28.Maguire P, Faulkner A. Communicating with cancer patients. BMJ 1988;297:1610.  Back to cited text no. 28  [PUBMED]  [FULLTEXT]




 

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