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Death Denial

From the VA Medical Center and RTA Hospice, Phoenix; Arizona State University, Tempe; and Arizona College of Osteopathic Medicine, Glendale, AZ.

Address reprint requests to Paul Rousseau, MD, 21914 N 74th Ln, Glendale, AZ 85310; email PalliativeDoctor{at}aol.com

It just can’t be. I’m afraid you’re wrong.

A cancer patient

DENIAL OF TERMINAL illness is common among dying patients and family members at a time when the mundane aspects of life are suddenly obscured by the prospect of a limited life expectancy. A dying person may renounce prognostic information as denial foments a desire to live and the person refuses to accept the diagnosis of a terminal disease. But how prevalent is denial in terminal illness? Although there are a paucity of studies, an analysis at St Christopher’s Hospice in London revealed that 26% of respondents partially suppressed awareness of impending death, whereas 8% demonstrated obvious denial in each of the last 8 weeks of life.^1,2 These percentages are most certainly higher in the many patients who have not taken the step into hospice care. Most physicians caring for dying patients realize that denial is not an uncommon or static concept but rather is very dynamic, with most patients resolving issues and eventually accepting the terminality of their disease. Nevertheless, dealing with denial, although frequently time-intensive and arduous, is an obligatory skill for physicians caring for patients and families with life-threatening illnesses.

RECOGNIZING AND TREATING DENIAL

Denial is formally defined as a defense mechanism in which the existence of unpleasant realities is denied and kept out of conscious awareness,^3,4 or, more succinctly stated in the realm of palliative care, denial is an unconscious mechanism aimed at negating a disease-oriented threat to the integrity of personhood and daily life. Denial is usually considered a pejorative approach to terminal illness and is paternalistically viewed by physicians as avoidance of reality or, rather, a misguided, noncompliant, uncooperative, imprudent, or eccentric method of dealing with the reality of dying.⁴ However, physicians may inadvertently collude with patients to foster denial by the use of body language and by the formation and context of statements and questions. For example, a statement such as "I’m sure your family doctor told you what’s wrong" may condone and contribute to ongoing denial by suggesting a certain answer and may essentially preclude further dialogue regarding disease-related concerns. Similarly, nodding the head yes or no during a statement or question may advocate a particular answer that once again may engender denial and may prohibit the patient from addressing medical concerns.⁵ However, although denial may produce a focus of concern,^1,4-6 it may also serve as a protective and adaptive mechanism to absorb deleterious and life-threatening information in a manageable and self-determined time frame. Conversely, denial may inhibit a peaceful dying process, engendering the use of futile treatments and prohibiting patients and families from reconciling differences, organizing financial matters, completing advance directives, and saying goodbye.

In dealing with denial, the first issue is whether it is present, and if so, should anything be done about it. The diagnosis of denial, subjective by its nature, depends on the physician’s appreciation of the patient’s views and values that are determined in large part by individual predilections as well as by cultural and ethnic matters. Familial influences must also be appreciated. If the illness overwhelms family members, they may deny the meaning of the illness and encourage or reinforce denial by the patient.⁷ Moreover, physicians must recognize that disagreement with the diagnosis or treatment plan should not necessarily generate a diagnosis of denial,⁵ but acknowledge that such discrepancy may be a veiled demonstration of patient autonomy and control, and perhaps, concern for quality of life.

If denial is determined to be present but not impacting the patient’s ability and desire to seek and accept help and is primarily an adaptive mechanism, it may be temporarily or permanently ignored. In such situations, physicians might best avoid paternalistic suggestions and allow the patient to continue functioning in a satisfactory manner despite the presence of denial. Fortunately, in such circumstances, denial usually dissipates as the disease progresses, and acceptance of impending death emerges.

However, if denial interferes with daily life and medical therapy, it should be addressed in a tolerant and compassionate manner. First, it is important to know the patient’s circumstances and available emotional support,⁵ not only from family members, but also from his/her primary physician. Physicians and family members can assure patients they will be there and not abandon them, because abandonment encourages isolation that may further promote denial. Physicians can also promise good symptom relief that includes physical, psychosocial, and spiritual symptoms, a promise that assuages fear (which may contribute to denial) and typically necessitates the inclusion of an interdisciplinary team exemplified by hospice and palliative care programs. Second, communication techniques should be appropriate for dealing with, and potentially resolving, denial; Buckman’s six-step protocol and Balaban’s four-step approach are excellent strategies that can be individualized for each patient (Table 1). ^8,9 Open-ended listening; nondefensive, neutral, and empathic responses; silence; and frequent regular interaction with family and patient from a designated physician can encourage trust and help lead to a diminution or resolution of denial. Moreover, reflecting upon and validating familial emotions are valuable and necessary and may facilitate a therapeutic alliance in dealing with patient denial. Patients should be asked what they know about their disease, what other health care providers have told them, and their understanding of their current situation.⁶ They should also be queried as to what they want to know, but if they are in obvious denial, then this question might best be reserved for a later visit.

REFERENCES

1. Vachon MLS: The emotional problems of the patient, in Doyle D, Hanks GWC, MacDonald N (eds): Oxford Textbook of Palliative Medicine, ed 2. Oxford, United Kingdom, Oxford University Press, 1998, pp 883-907

2. Fife BL: The conceptualization of meaning in illness. Soc Sci Med 38: 309-316, 1994

3. Miller BF: Miller-Keane Encyclopedia & Dictionary of Medicine, Nursing, & Allied Health. Philadelphia, PA, W.B. Saunders, 1997, p 426

4. Shelp EE, Perl M: Denial in clinical medicine: A reexamination of the concept and its significance. Arch Intern Med 145: 697-699, 1985[Abstract]

5. Ness DE, Ende J: Denial in the medical interview: Recognition and management. JAMA 272: 1777-1781, 1994[Abstract]

6. Goold SD, Williams B, Arnold RM: Conflicts regarding decisions to limit treatment: A differential diagnosis. JAMA 283: 909-914, 2000[Abstract/Free Full Text]

7. Hauser RT, Jacobson AM, Bliss R, et al: The family and the onset of its youngster’s insulin-dependent diabetes: Ways of coping, in Cole RE, Reiss D (eds): How Do Families Cope With Chronic Illness? Hillsdale, NJ, Lawrence Erlbaum Association, 1993, p 26

8. Buckman R: How to Break Bad News: A Guide for Health Care Professionals. Baltimore, MD, Johns Hopkins University Press, 1992

9. Balaban RB: A physician’s guide to talking about end-of-life care. J Gen Intern Med 15: 195-200, 2000[Medline]

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