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* Delirium
Psychosomatics 43:183-194, June 2002
© 2002 The Academy of Psychosomatic Medicine

The Delirium Experience

Delirium Recall and Delirium-Related Distress in Hospitalized Patients With Cancer, Their Spouses/Caregivers, and Their Nurses

William Breitbart, M.D., Christopher Gibson, Ph.D., and Annie Tremblay, M.D.

Received January 18, 2002; accepted January 31, 2002. From the Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, New York, New York. Department of Psychiatry, Hotel Dieu Quebec, Quebec City, Canada. Address for correspondence and reprints: Dr. William Breitbart, Chief, Psychiatry Service, Department of Psychiatry and Behavioral Sciences, Memorial Sloan-Kettering Cancer Center, 1242 Second Avenue, Box 421, New York, New York 10021. Email;Breitbaw{at}mskcc.org


  ABSTRACT

 
TOP
 ABSTRACT
INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
We conducted a systematic examination of the experience of delirium in a sample of 154 hospitalized patients with cancer. Patients all met DSM-IV criteria for delirium and were rated with the Memorial Delirium Assessment Scale as a measure of delirium severity, phenomenology, and resolution. Of the 154 patients assessed, 101 had complete resolution of their delirium and were administered the Delirium Experience Questionnaire (DEQ—a face-valid measure that assesses delirium recall and distress related to the delirium episode). Spouse/caregivers and primary nurses were also administered the DEQ to assess distress related to caring for a delirious patient. Fifty-four (53.5%) patients recalled their delirium experience. Logistic-regression analysis demonstrated that short-term memory impairment (odds ratio [OR] = 38.4), delirium severity (OR = 11.3), and the presence of perceptual disturbances (OR = 6.9) were significant predictors of delirium recall. Mean delirium-related distress levels (on a 0–4 numerical rating scale of the DEQ) were 3.2 for patients who recalled delirium, 3.75 for spouses/caregivers, and 3.09 for nurses. Logistic-regression analysis demonstrated that the presence of delusions (OR = 7.9) was the most significant predictor of patient distress. Patients with "hypoactive" delirium were just as distressed as patients with "hyperactive" delirium. Karnofsky Performance Status (OR = 9.1) was the most significant predictor of spouse/caregiver distress. Delirium severity (OR =5.2) and the presence of perceptual disturbances (OR =3.6) were the most significant predictors of nurse distress. In conclusion, a majority of patients with delirium recall their delirium as highly distressing. Delirium is also a highly distressing experience for spouses/caregivers and nurses who are caring for delirious patients. Prompt recognition and treatment of delirium is critically important to reduce suffering and distress.

Key Words: Delirium • Distress

  INTRODUCTION

 
TOP
 ABSTRACT
 INTRODUCTION
METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 
Delirium is a highly prevalent neuropsychiatric disorder in hospitalized medically ill patients and is characterized by abrupt onset of disturbances of consciousness, attention, cognition, and perception that tend to fluctuate over the course of the day.1–6 Delirium is associated with increased morbidity,7–10 mortality,11–16 and interference with pain and other symptom assessment and control17,18 in medically ill populations, including the hospitalized elderly and patients with cancer. Although the increased morbidity and mortality associated with delirium has been relatively well established, almost no studies have investigated patient recollection and psychological distress related to an episode of delirium.19 The morbidity or distress related to delirium, to date, has been described almost exclusively in terms of medical morbidity or complications, such as increased risk for pneumonia, decubitus ulcers, seizures, postoperative complications, longer hospital stays, and long-term disability,7–10 with no attention to the psychological morbidity experienced by patients, caregivers, or health care providers.

The scientific literature that has explored patient recollection and distress related to episodes of delirium or confusional states is quite inadequate and has included only small-sample, qualitative studies that have been restricted to the intensive care/critical care setting20–25 or to patients with "near death" or "nearing death awareness" experiences.26–29 These studies generally have been quite limited by their methodology and only very rarely have addressed the distress related to delirium in a quantitative manner or used a systematic assessment of delirium phenomenology (e.g., a delirium assessment tool such as the Delirium Rating Scale, the Confusion Assessment method, or the Memorial Delirium Assessment Scale [MDAS]). Although limited in their methodology, these studies have, however, suggested that a significant percentage of patients with delirium or confusional states recall their experiences during the episode of delirium and that these experiences tend to be distressing and disturbing.19–29

For example, Schofield19 interviewed a sample of 19 elderly patients, inquiring as to their reactions to an episode of delirium. The majority of patients recalled their delirium episode, especially experiences of perceptual disturbance such as illusions or hallucinations. They were also able to remember short verbal commands from nurses during these periods of altered perception. The patients with illusions and hallucinations were often (sic, no percentage given) able to describe their experiences in detail, which ranged from being pleasant to horrible and frightening. Laitinen20 interviewed a small sample of patients who had delirium in the intensive care unit after cardiac surgery. Laitinen writes, "the patients remembered their confusion well; it was a significant, incomprehensible experience for them ... they felt anxiety while on the threshold between awareness and unawareness." Minnick et al.21 conducted interviews with 15 patients in intensive care who had required physical restraints during an episode of confusion. Six patients (40%) remembered some aspect of being restrained. Patients cited hallucinations and intubation as major stressors in the intensive care unit. Despite that, patients did not report "great distress" related to being physically restrained.

Delirium is underrecognized, misdiagnosed and undertreated.1,30–33 In fact, delirium, especially "hypoactive" delirium, is often mistaken for depression or is not recognized as delirium.32–35 In addition, although current clinical practice guidelines for the management of delirium and reports elsewhere have suggested that hypoactive delirium responds equally well to neuroleptic treatment as hyperactive delirium,1,36 classic teaching has never advised the use of aggressive treatment (including neuroleptics) for the management of hypoactive delirious patients.37,38 One of the barriers to adequate clinical intervention in delirium may be the lack of appreciation for the distress experienced by patients with delirium or the impact of delirium on spouses/caregivers and nursing staff.3,4 It is also likely that patients with hypoactive delirium are perceived to be in less distress than agitated patients with hyperactive delirium and so are not treated as aggressively (if at all). Therefore, the question of how distressing the experience of delirium is has important treatment implications. Clinicians might be more likely to treat delirium, even hypoactive delirium, if they were aware that delirium is in fact a distressing experience.

We therefore undertook to examine the experience of delirium in hospitalized patients with cancer and to describe the frequency of delirium recall and the level of distress related to the delirium experience in patients with cancer, their spouses/caregivers, and their nurses. Our secondary goal was to examine the relationships among delirium recall, delirium-related distress, delirium phenomenology, delirium etiology, and sociodemographic and medical variables.


  METHODS

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
RESULTS
 DISCUSSION
 REFERENCES
 
Subjects and Procedures
Subjects in this study were gathered from all consecutive clinical referrals to the Psychiatry Service at Memorial Sloan-Kettering Cancer Center during the period ranging from July 1, 2000 through November 1, 2000. A total of 154 patients met DSM-IV criteria for delirium (as determined by W.B. and A.T.) and were treated. Of these 154 delirious patients treated for delirium during this period of time, 101 patients had successful treatment with complete resolution of their delirium. We conducted this prospective survey of the experience of delirium in this convenience sample of 101 hospitalized patients with cancer who had recovered from a delirium episode. All patients had been referred to the Psychiatry Service for consultation and treatment and provided verbal consent to be evaluated for the purposes of this study. Because the study procedures required very little deviation from standard clinical practice (the presence of two treating psychiatrists documenting delirium diagnosis, phenomenology, and severity and inquiring in a systematic fashion about the experience and distress related to an episode of delirium), written informed consent and institutional review board approval were not obtained.

After the DSM-IV diagnosis of delirium was confirmed by the two study clinician investigators (W.B. and A.T.), these 154 delirious patients were rated, on the initial day of consultation, by these investigators for delirium severity and phenomenology by use of the MDAS, and treatment for delirium was initiated. The majority of these patients (n = 82) received olanzapine treatment as part of an open trial of olanzapine therapy.39 Data on delirium etiology, cancer diagnosis, cancer stage, physical functioning, the presence of brain metastases, history of dementia, and sociodemographic data were also collected at initial consultation. Of these 154 hospitalized patients with cancer with delirium, 101 had complete resolution of their delirium, which allowed for an assessment of their experience of delirium with the Delirium Experience Questionnaire ([DEQ] a face-valid instrument that assesses recall of the delirium experience and the degree of distress related to the delirium episode in patients, spouses/caregivers, and nurses). Of the 154 delirious patients treated, 53 died before delirium was completely resolved and so were not able to be evaluated as part of our survey of delirium recall and experience. Only 75 of the 101 patients evaluated in this study had spouses or caregivers who were available to be interviewed (primary caregivers included spouses [n = 68], adult children [n = 5], and sibling/friend [n = 3]). The primary nurse for each of the 101 delirious patients was available for interview. No sociodemographic data was collected on spouse/caregivers or nurses.

Study Measures
Sociodemographic and medical variables (including delirium etiologies) were collected at the baseline assessment and were supplemented throughout the period of delirium treatment as they became apparent. These variables included age, sex, cancer diagnosis, stage of cancer (localized, metastatic, or terminal), history of dementia, presence of brain metastases, and delirium etiologies. In addition, the following study measures were used.

MDAS
The MDAS is a 10-item, four-point, clinician-rated scale (possible range, 0–30) that is designed and validated to accurately diagnose and rate the severity of delirium in medically ill patients, including patients with cancer and other medically ill populations.40–42 Items included in the MDAS reflect the diagnostic criteria for delirium in the DSM-IV. Scale items assess disturbance in arousal and level of consciousness, as well as several areas of cognitive functioning (memory, attention, orientation, and disturbances in thinking) and psychomotor activity. The initial validation study40 suggested a cutoff score of 13 as being sensitive and specific in identifying the presence or absence of delirium (>=13 indicative of delirium). Subsequent validation studies41,42 have suggested a score as low as 10 being a more stringent cutoff score for identifying delirium in medically ill patients. In this study, we used an MDAS score of <=10 to indicate delirium resolution (a more stringent threshold for delirium resolution than a cutoff score of 13). The MDAS allows for delirium to be classified into subtypes (i.e., hypoactive, hyperactive, or mixed) on the basis of arousal disturbance and psychomotor activity (i.e., MDAS item 9). Delirium severity can be categorized by use of MDAS scores, with "mild" delirium reflected by MDAS scores <=15, "moderate" severity delirium by MDAS scores of 16–22, and "severe" delirium as MDAS scores of 23–30. MDAS ratings were performed at the time of initial consultation and initiation of treatment and were repeated periodically during the course of treatment and on delirium resolution. The two raters (W.B. and A.T.) had adequate interrater reliability with the MDAS ({kappa} > .8).

Karnofsky Performance Status Scale
The Karnofsky Performance Status Scale (KPS) is a clinician-rated measure of physical performance ability. It is widely used to estimate overall physical functioning in medically ill populations. It ranges from 0 to 100, with low scores representing a greater need for medical care and assistance in daily living activities and higher scores corresponding to more independent functioning.43 The KPS was rated at initial consultation only.

DEQ
The DEQ is a face-valid, brief instrument that was developed by the investigators specifically for this survey study and assesses recall of the delirium experience and the degree of distress related to the delirium episode in patients, spouses/caregivers, and nurses. The DEQ asks six questions of patients who have recovered from an episode of delirium including: 1) Do you remember being confused? Yes or No; 2) If no, are you distressed that you can't remember? Yes or No; 3) How distressed? 0–4 numerical rating scale (NRS) with 0 = not at all and 4 = extremely; 4) If you do remember being confused, was the experience distressing? Yes or No; 5) How distressing? 0–4 NRS; and 6) Can you describe the experience? This final question allowed for a qualitative assessment of the delirium experience through the verbatim transcription of patients' description of the experience (not reported in this paper). In addition, spouse/caregivers and nurses were each asked a single question: 1) Spouse/caregiver: How distressed were you during the patient's delirium? 0–4 NRS; 2) Nurse: Your patient was confused, did you find it distressing? 0–4 NRS. The DEQ was administered on resolution of delirium.

Statistical Analyses
Analyses for this study were performed by use of the SPSS for Windows statistical software package. Descriptive statistics were generated to describe the sample characteristics and to generate the number of patients who remember or do not remember the delirium experience. To measure the difference in levels of reported distress among the three groups (patients, spouses/caregivers, and nurses), a one-way analysis of variance was performed. The possible correlates of patient recall of delirium, as well as correlates of patient, spouse/caregiver, and nurse distress were examined by conducting {chi}2 analyses. For the purpose of {chi}2 analyses, distress levels for the three study groups were defined as having two levels: no to moderate distress (0–2 NRS) and severe distress (3–4 NRS). Age was defined as a dichotomous variable with two levels: age <=70 and >=70 years. Race was defined as having two categories: white and all other races. KPS scores were broken down into two levels: <=30 and >=30. Delirium severity was categorized into three levels: mild (MDAS score 0–15), moderate (MDAS score 16–22), and severe (MDAS score 23–30). Individual MDAS item scores were defined as having two levels: none to mild (0–1) and moderate to severe (2–4). From these analyses, variables that appeared to significantly interact with patient delirium recall and later delirium-related distress were then entered into separate logistical-regression analyses to determine the best predictors of delirium recall and delirium-related distress.


  RESULTS

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
DISCUSSION
 REFERENCES
 
Subjects
The mean age for the 101 patients was 58.3 years (SD 16.7; range, 19–89). Gender was relatively evenly divided (52 men and 49 women). The racial composition included whites (66%, n = 67), blacks (19.8%, n = 20), Hispanics (9.9%, n = 10), and Asians (3%, n = 3). The mean KPS score was 35.5 (SD 7.7; range, 20–50).

A diverse range of cancer diagnoses were encountered within this group. Cancer diagnoses included lung (20.8%, n = 21), gastrointestinal (13.9%, n = 14), lymphoma (12.9%, n = 13), breast (10.9%, n = 11), head and neck (5.9%, n = 6), ovarian (4%, n = 4), brain (3%, n = 3), sarcoma (1%, n = 1), and other cancers (27.7%, n = 28). The stage of cancer was primarily metastatic (78.2%, n = 79), followed by localized (15.8%, n = 16) and terminal (5%, n = 5) stages. A relative minority of the sample had a history of brain metastases (23.8%, n = 24) or a history of dementia (17.8%, n = 18). The causes of the delirium episode varied among patients. Multiple etiologies (67.3%, n = 68) were more common than single etiologies (32.7%, n = 33). Numerous potential etiologies were observed and quantified. The most common etiologies for delirium included opioid analgesics (58.4%, n = 59), corticosteroids (27.7%, n = 28), systemic infection (38.6%, n = 39), hypoxia (25.7%, n = 26), central nervous system spread of cancer (11.9%, n = 12), dehydration (11.9%, n = 12), other medications (0%, n = 0), and "other" etiologies (12.9%, n = 13). Delirium severity, as based on MDAS scores, was distributed normally, with a mean MDAS score of 19.20 (SD 3.18; range, 14–30) for the population. Approximately 12% (n = 12) of delirious patients were characterized as having a mild delirium, 69% (n = 70) had a moderate severity delirium, and 19% (n = 19) had a severe delirium. Delirium was categorized as to subtype of delirium; 53.5% (n = 54) of patients had hypoactive delirium, whereas 46.5% (n = 47) had hyperactive delirium (on the basis of MDAS item 9, all patients with hyperactive or mixed delirium were classified as hyperactive; patients with hypoactive delirium were classified as hypoactive).

Pharmacotherapy for Delirium
Of the patients with delirium included in this study, 78 (77.2%) were treated with olanzapine only, 2 (2%) received haloperidol only, 17 (16.8%) received a combination of olanzapine and haloperidol, and 7 (6.9%) received olanzapine and another neuroleptic (e.g., chlorpromazine, thioridazine, or risperidone). The mean olanzapine dosage at end of delirium treatment was 6.3 mg (SD 0.45; range, 2.5–20). The mean haloperidol dosage was 4.8 mg (SD 0.49; range, 2.5–10) given intravenously.

Patient Recall of the Delirium Experience: Frequency and Correlates of Recall
Fifty-four patients (53.5%) recalled the delirium experience, whereas 47 patients (46.5%) did not. A series of {chi}2 analyses were performed to determine the associations among a variety of sociodemographic, medical, and delirium phenomenological variables and patient recall of the delirium experience. Several variables were significantly associated with the ability of patients to recall delirium (Table 1), including 1) delirium phenomenology as measured by the MDAS: MDAS total score (delirium severity), MDAS item 1 (reduced level of consciousness), MDAS item 2 (disorientation), MDAS item 3 (short-term memory impairment), MDAS item 5 (reduced ability to maintain and shift attention), MDAS item 7 (perceptual disturbance), MDAS item 8 (delusions), and MDAS item 9 (delirium subtype, hypoactive vs. hyperactive); and 2) sociodemographic and medical variables: age, the presence of brain metastases, history of dementia, and KPS rating.


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TABLE 1.



Delirium phenomenology, as measured by the MDAS (the total score reflecting delirium severity and individual MDAS items) appears to be highly associated with patient recall of the delirium experience. Delirium severity (on the basis of MDAS total score) was found to negatively associate with patient delirium recall. Only 16% of patients with severe delirium (i.e., MDAS total scores >=23) were able to recall their delirium experience, versus 55% of patients with moderate delirium and 100% of patients with mild delirium, {chi}2 (2, n = 101) = 21.4, P < 0.001 (Figure 1). A reduced level of consciousness (scores on MDAS item 1) was negatively associated with the ability to recall delirium. Only 42% of patients with severe impairment in level of consciousness were able to recall the delirium experience, versus 88% of patients with no to mild impairment, {chi}2 (1, n = 101) = 15.9, P < 0.001. Disorientation (scores on MDAS item 2) was negatively associated with recall of delirium. Only 48% of patients with severe disorientation were able to recall the delirium experience, versus 100% of patients with no to mild disorientation, {chi}2 (1, n = 101) = 9.6, P < 0.001. Short-term memory impairment (scores on MDAS item 3) was negatively associated with recall of the delirium experience. Only 26% of patients with severe short-term memory impairment were able to recall the delirium experience, versus 95% of patients with no to mild short-term memory impairment, {chi}2 (1, n = 101) = 45.9, P < 0.001. A reduced ability to maintain and shift attention (MDAS item 5) was negatively associated with recall of the delirium experience. Only 49% of patients with severe impairment in ability to maintain and shift attention were able to recall the delirium experience, versus 90% of patients with no to mild impairment, {chi}2 (1, n = 101) = 5.9, P < 0.01. Perceptual disturbances, including misperceptions, illusions, and hallucinations (scores on MDAS item 7) were found to negatively associate with the ability to recall the delirium experience. Only 40% of patients with severe perceptual disturbance (i.e., frequent or intense illusions or hallucinations with persistent inappropriate behavior that disrupts the interview or interferes with medical care) were able to recall the delirium experience, versus 79% of patients with no to mild perceptual disturbances, {chi}2 (1, n = 101) = 13.8, P < 0.001. The presence of delusions (scores on MDAS item 8), were found to associate negatively with the ability to recall the delirium experience. Only 47% of patients with severe delusions (i.e., persistent and/or intense delusions resulting in inappropriate behavior that disrupts the interview or interferes with medical care) recalled the delirium experience, versus 71% of patients with no to mild delusions, {chi}2 (1, n = 101) = 5.02, P < 0.02. Delirium subtype (MDAS item 9) was found to be significantly associated with recall of delirium, with 43% of patients with hypoactive delirium recalling the delirium experience, versus 66% of patients with hyperactive delirium, {chi}2 (1, n = 101) = 6.2, P < 0.04.



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FIGURE 1.



Although delirium severity, disturbances in level of consciousness, disorientation, short-term memory impairment, attentional deficits, perceptual disturbances, delusions, and delirium subtype were significantly associated with recall of delirium, several aspects of delirium phenomenology, as measured by the MDAS, were not significantly associated with delirium recall (Table 1). These included impaired digit-span (MDAS item 4), disorganized thinking (MDAS item 6), and sleep-wake cycle disturbance/disorder of arousal (MDAS item 10).

Several sociodemographic and medical variables were also highly associated with delirium recall. Age was found to be negatively associated with recall of the delirium experience. Only 33% of patients age >70 years recalled the delirium experience, compared with 62% of patients age <70 years, {chi}2 (1, n = 101) = 6.95, P < 0.008. The presence of brain metastases was found to be negatively associated with the ability to recall the delirium experience, with only 33% of patients with brain metastases recalling the experience, versus 60% of those patients without, {chi}2 (1, n = 101) = 5.1, P < 0.02. A history of dementia was negatively associated with the ability to recall the delirium experience, with only 28% of patients with dementia histories recalling delirium, versus 59% of patients without prior history of dementia, {chi}2 (1, n = 101) = 5.8, P < 0.015. Physical performance status (KPS score) was positively associated with the ability to recall delirium, with 65% of patients with KPS scores >30 able to recall delirium, versus 39% of patients with KPS scores <30, {chi}2 (1, n = 101) = 6.97, P < 0.007.

A logistic-regression analysis was conducted to determine the strongest predictors of the ability to recall the delirium experience from among the clinical and sociodemographic variables considered in the study. All variables that were significantly associated with delirium recall in the univariate analyses were entered into a stepwise logistic regression model by backward elimination. The overall model was statistically significant, {chi}2 (2, n = 101) = 70.22, P < 0.001. Short-term memory impairment (MDAS item 3) was the strongest predictor of delirium recall (odds ratio [OR] = 38.48), followed by delirium severity, as measured by MDAS total score (OR = 11.3). Finally, the presence of perceptual disturbances was also a significant predictor of delirium recall, (OR = 6.9). The presence of brain metastases, history of prior dementia, delirium subtype (hypoactive vs. hyperactive), MDAS item 1, MDAS item 2, MDAS item 5, MDAS item 8, age, and KPS score were not significant predictors of delirium recall as based on the logistic-regression model (Table 2).


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TABLE 2.



Delirium-Related Distress in Patients, Spouses/Caregivers, and Nurses
Overall, of the 54 patients who recalled their delirium, 11 (20%) reported no to moderate distress (NRS 0–2), whereas 43 (80%) reported severe distress (NRS 3–4). Of the 75 spouses/caregivers, 18 (24%) reported no to moderate distress, whereas 57 (76%) reported severe distress. Of the 101 nurses, 27 (27%) reported no to moderate distress, whereas 74 (73%) reported severe distress. Mean distress levels for the patients recalling delirium were 3.2 (SD 1.1) for patients, 3.75 (SD 0.47) for spouses/caregivers, and 3.09 (SD 0.77) for nurses. A one-way analysis of variance revealed a significant difference among the groups, F(1,2) = 15.65, P < 0.001. Sheffe post hoc analyses revealed that, although the level of distress for the spouses/caregivers was significantly higher than that of either the patients or nurses, the patients did not have a significantly higher level of distress than the nurses (Figure 2). In contrast, it should be noted that the mean distress level of the 47 patients who did not recall their delirium was only 1.46 (SD 0.93).



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FIGURE 2.



Correlates of Delirium-Related Distress in Patients
A series of {chi}2 analyses were conducted to determine the associations among a variety of sociodemographic, medical, delirium etiological, and delirium phenomenological variables and delirium-related distress in patients who recalled their delirium experience (Table 3). Several variables were significantly associated with patient distress, including perceptual disturbances (MDAS item 7), delusions (MDAS item 8), corticosteroids as a delirium etiology, and KPS score.


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TABLE 3.



The severity of perceptual disturbances (scores on MDAS item 7) was found to be positively associated with delirium-related patient distress. Only 40% of patients with no to mild perceptual disturbance reported severe distress, compared with 100% of patients with moderate to severe perceptual disturbance, {chi}2 (1, n = 54) = 13.8, P < 0.001. The severity of delusions (scores on MDAS item 8) were found to be positively associated with delirium-related patient distress. Only 29% of patients with no to mild delusions reported severe distress, compared with 95% of patients with moderate to severe delusions, {chi}2 (1, n = 54) = 4.6, P < 0.03. Corticosteroids as a delirium etiology were found to be positively associated with patient delirium-related distress, with 100% of patients who received corticosteroids reporting severe distress, versus 71% of patients who did not receive corticosteroids, {chi}2 (1, n = 54) = 13.8, P < 0.01. Physical performance status (KPS scores) was negatively associated with delirium-related patient distress, with 94% of patients with KPS scores <30 reporting severe distress, versus 72% of patients with KPS scores >30, {chi}2 (1, n = 54) = 3.7, P < 0.05.

Although perceptual disturbances, delusions, corticosteroids as a delirium etiology, and physical performance status were significantly associated with delirium-related patient distress, several aspects of delirium phenomenology, as measured by the MDAS, were not significantly associated with delirium-related distress (Table 3). These included delirium severity, disturbances in level of consciousness (MDAS item 1), disorientation (MDAS item 2), short-term memory impairment (MDAS item 3), impaired digit-span (MDAS item 4), attentional deficits (MDAS item 5), disorganized thinking (MDAS item 6), and sleep-wake cycle disturbance/disorder of arousal (MDAS item 10). Most interestingly, there was no difference in patient ratings of delirium-related distress on the basis of subtype of delirium. Patients with hypoactive delirium were just as distressed as patients with hyperactive delirium.

A logistic-regression analysis was conducted to determine the strongest predictors of patient-related delirium distress from among the clinical and sociodemographic variables considered in the study. All variables that were significantly associated with patient-related delirium distress in the univariate analyses were entered into a stepwise logistic-regression model by backward elimination. The overall model was statistically significant, {chi}2 (1, n = 54) = 5.46, P < 0.02. The presence of delusions (scores on MDAS item 8) was the only significant predictor of patient distress (OR = 7.9). Perceptual disturbances, corticosteroids as a delirium etiology, and physical performance status were not found to be significant predictors of patient distress on the basis of the logistic-regression model (Table 4).


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TABLE 4.



Correlates of Delirium-Related Distress in Spouses/Caregivers
A series of {chi}2 analyses were performed to determine the associations among a variety of patient-related sociodemographic, medical, and delirium phenomenological variables and spouse/caregiver distress (Table 5). Several variables were significantly associated with spouse/caregiver distress, including the presence of brain metastases, delirium subtype (MDAS item 9—hypoactive vs. hyperactive), and KPS rating.


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TABLE 5.



The presence of brain metastases was found to be positively associated with spouse distress; 95% of spouses/caregivers of patients with brain metastases reported severe distress, versus 70% of spouses/caregivers of patients without brain metastases, {chi}2 (1, n = 75) = 4.9, P < 0.02. Delirium subtype (MDAS item 9) was found to be significantly associated with spouse/caregiver distress. In patients with hypoactive delirium, 66% of spouses/caregivers reported severe distress, compared with 88% of those with patients who exhibited hyperactive delirium, {chi}2 (1, n = 75) = 7.86, P < 0.02. Physical performance status (KPS scores) were negatively associated with spouse/caregiver distress, with 60% of spouses/caregivers of patients with KPS scores >30 reporting severe distress, compared with 94% of spouses/caregivers of patients with KPS scores <30, {chi}2 (1, n = 75) = 12.03, P < 0.001.

A logistic-regression analysis was conducted to determine the strongest predictors of spouse/caregiver distress from among the patient-related clinical and sociodemographic variables considered in the study. All variables that were significantly associated with spouse/caregiver distress in the univariate analyses were entered into a stepwise logistic-regression model by backward elimination. The overall model was statistically significant, {chi}2 (1, n = 75) = 13.49, P < 0.001. Patient physical performance status (KPS scores) rating was the only significant predictor of spouse/caregiver distress (OR = 9.1). Delirium subtype (MDAS item 9) and the presence of brain metastases as a delirium etiology were not significant predictors of spouse/caregiver distress as based on the logistic-regression model (Table 4).

Correlates of Delirium-Related Distress in Nurses
A series of {chi}2 analyses were performed to determine the associations among a variety of patient-related sociodemographic, medical, and delirium phenomenological variables and nurse distress (Table 6). Several patient-related variables were significantly associated with nurse distress, including dehydration and systemic infection as delirium etiologies, perceptual disturbances (MDAS item 7), delusions (MDAS item 8), sleep-wake cycle disturbance/disorder of arousal (MDAS item 10), and delirium severity (MDAS total score).


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TABLE 6.



Dehydration as a delirium etiology was significantly associated with nurse distress; 42% of nurses of patients with dehydration reported severe distress, compared with 78% of nurses of patients without dehydration, {chi}2 (1, n = 101) = 6.9, P < 0.014. Systemic infection as a delirium etiology was significantly associated with nurse distress; 59% of nurses of patients with systemic infection reported severe distress, compared with 83% of nurses of patients without systemic infection, {chi}2 (1, n = 101) = 6.8, P < 0.009.

The severity of perceptual disturbances (scores on MDAS item 7) were found to positively associate with nurse distress. Only 65% of nurses of patients with no to mild perceptual disturbance reported severe distress, compared with 88% of nurses with patients with moderate to severe perceptual disturbance (i.e., frequent or intense illusions or hallucinations with persistent inappropriate behavior that disrupts the interview or interferes with medical care), {chi}2 (1, n = 101) = 6.06, P < 0.011. The severity of delusions (scores on MDAS item 8) was found to be positively associated with nurse distress. Only 68% of nurses of patients with no to mild delusions reported severe distress, compared with 86% of nurses of patients with moderate to severe delusions, {chi}2 (1, n = 101) = 3.19, P < 0.05. The severity of sleep-wake cycle/arousal disturbance (scores on MDAS item 10) was found to be positively associated with nurse distress. Only 70% of nurses of patients with no to mild sleep-wake cycle/arousal disturbance reported severe distress, compared with 100% of nurses of patients with moderate to severe sleep-wake cycle/arousal disturbance reporting severe distress, {chi}2 (1, n =101) = 5.04, P < 0.018. Delirium severity (based on patients' total MDAS score) was found to be positively associated with nurse distress. Analysis revealed that 89% of nurses of patients with severe delirium (MDAS scores 23–30) reported severe distress, compared with 74% of nurses of patients with moderate delirium (MDAS scores 16–22) and 42% of nurses of patients with mild delirium (MDAS scores 0–15), {chi}2 (3, n = 101) = 8.3, P < 0.015.

A logistic-regression analysis was conducted to determine the strongest predictors of nurse distress from among the patient-related clinical and sociodemographic variables considered in the study. All variables that were significantly associated with nurse distress in the univariate analyses were entered into a stepwise logistic-regression model by backward elimination. The overall model was statistically significant, {chi}2 (2, n = 101) = 11.85, P < 0.002. Delirium severity (MDAS total score) was the strongest predictor of nurse distress (OR = 5.16). Perceptual disturbances (MDAS item 7) were also a significant predictor of nurse distress (OR = 3.59). The presence of dehydration and systemic infection as delirium etiologies, delirium subtype (MDAS item 9), delusions (MDAS item 8), and sleep-wake cycle/arousal disturbance (MDAS item 10) were not significant predictors of nurse distress as based on the logistic-regression model (Table 4).


  DISCUSSION

 
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 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
REFERENCES
 
This study represents the first prospective, systematic evaluation of delirium recall and related distress in a large clinical sample of hospitalized delirious patients with cancer. We have confirmed that a majority of patients who experience delirium do, in fact, recall the delirium experience (53.5%). This finding is consistent with the existing literature, which have suggested that many patients do recall their delirium episode.19–29 The most significant predictors of recall of delirium in our study (based on logistic-regression analysis) include the degree of short-term memory impairment during the delirium episode, the severity of the delirium episode itself, and the presence of perceptual disturbances (e.g., hallucinations). The more severe the delirium (in terms of almost each and every diagnostic feature of delirium as measured by the MDAS), the more likely patients are not to recall the delirium episode. Not surprisingly, the degree of short-term memory impairment was the strongest predictors of delirium recall (more impairment, less recall). Perhaps somewhat counterintuitively, the presence and severity of hallucinations were negatively associated with delirium recall. Patients with severe hallucinations, despite the assumption that such symptoms would be intensely frightening and memorable, were less likely to recall their delirium episode. This likely reflects the overriding influence of delirium severity itself as a determinant of recall, and the more severe the delirium, the more likely one is to have severe symptoms such as short-term memory impairment and severe hallucinations and perceptual disturbances. The existing literature to date has not systematically examined predictors of delirium recall.

We have also established that delirium (in patients who recall the event) is a highly distressing experience. Existing literature has suggested that the presence of perceptual disturbances and hallucinations contribute most significantly to the distress patients with delirium experience.19–21 Our study confirms that such factors as the severity of perceptual disturbances, severity of delusions, the presence of corticosteroids as a delirium etiology, and poorer KPS status were significantly correlated with delirium-related distress in patients. For example, when asked to describe the experience of being delirious, one patient replied, "I see dead people!" In contrast to the existing literature, logistic-regression analysis revealed that the major predictor of patient distress was the presence of delusions. Up to this point, the existing literature had not examined the role of delusions in delirium-related distress; however, patients who experience frightening, paranoid delusions may naturally be expected to find this experience particularly distressing.

Perhaps the most novel contribution of this study to the delirium literature is our documentation of the distress that is experienced by the spouses/caregivers of patients with delirium, as well as the distress experienced by nurses who care for the delirious patient. This finding highlights the fact that delirium morbidity extends well beyond the patient to include the family as well as health care providers. Although 80% of patients experienced delirium as severely distressing, 76% of spouses/caregivers and 73% of nurses reported similar severe levels of distress. Mean distress levels (on a 0–4 NRS) for patients, spouses/caregivers, and nurses were 3.2, 3.75, and 3.09, respectively. Of interest, spouses/caregivers were significantly more distressed by the patient's delirium than were the nurses or the patients themselves. Nurses and patients were equally distressed by the delirium experience.

Several factors were significantly correlated with spouse/caregiver distress, including the delirium that presents as the hyperactive subtype, the presence of brain metastases as a delirium etiology, and poorer KPS scores (i.e., <30, which indicates severe physical debilitation and near death). Clearly, what was most distressing to spouses/caregivers about the delirium experience of their loved one was the presence of overt agitation, the fact that cancer had spread to the brain, and the appreciation for the fact that the patient was severely debilitated and perhaps nearing death. In fact, logistic-regression analysis demonstrated that a KPS score <30 was the strongest predictor of spouse/caregiver distress.

Nurses carry a large portion of the burden of providing medical and nursing care to patients with delirium and thus are the members of the medical team who spend the most time in direct, prolonged, and intimate contact with these patients and their families. Several factors were significantly correlated with nurse distress in caring for delirious patients, including delirium severity and several specific symptoms associated with delirium. These symptoms included the presence of hallucinations, delusions, and sleep-wake cycle disturbance. In addition, the presence of dehydration and systemic infection as etiologies of delirium was significantly associated with nurse distress. All of these factors clearly increase the burden of nursing care in a variety of ways. Dehydration and infection as etiologies of delirium are among the most commonly identified and treated causes of delirium16 and require significant nursing care through the provision of fluids and intravenous antibiotics administered directly by nurses. An agitated, severely delirious patient with hallucinations, delusions, and disrupted sleep is obviously a significant nursing care challenge and in fact can consume many hours of nursing time, which is often associated with great anxiety, frustration, helplessness and even fear. Logistic-regression analysis demonstrated that delirium severity and the presence of hallucinations were the strongest predictors of nurse distress.

Although this study has several strengths (e.g., the first prospective, systematic evaluation of delirium recall and related distress in a large sample of delirious patients, their spouses/caregivers, and nurses and the use of validated instruments to assess delirium severity and phenomenology), there are important limitations that should be noted. First, although we used a well-validated measure of delirium severity and phenomenology (MDAS), the DEQ was merely a simple face-valid tool, designed by the investigators specifically for this study, which relied completely on participants' subjective recollection of the delirium experience. It should be noted that no other validated measure of this kind exists in the literature. The DEQ, as described in the Study Measures section, asks relatively simple face-valid, dichotomous questions regarding recall and also uses simple 0–4 NRSs for patients, spouses/caregivers, and nurses to describe delirium-related distress. Second, no attempt to objectively corroborate these subjective ratings was made. For example, we did not seek corroborative evidence of patients' expression of delirium-related distress from family members, nurses, or the medical chart. Third, although the overall sample size was quite large in comparison with previous studies, the number of patients who recalled their delirium was relatively small. In addition, the sample was not a random one but rather was a convenient sample of consecutive referrals. Finally, by necessity, we focused on evaluating distress exclusively in patients who recalled their delirium, and we relied on their retrospective recollection of the distress they experienced during a period of time when they were cognitively impaired to varying degrees. Despite the above-noted limitations, our study is an important step in beginning to demonstrate the impact of delirium on patients, their spouses/caregivers, and nurses.

The clinical implications of this study are profound. This study demonstrates that delirium morbidity includes the important element of patient distress. In essence, delirium, like pain, is a severely distressing experience. Remarkably, delirium is equally as distressing for patients with hypoactive delirium (who are not overtly agitated) as it is for patients with hyperactive delirium (who are overtly agitated). We believe that this study makes a compelling case for the necessity for timely recognition and rapid treatment of delirium in hospitalized medically ill as a quality of life issue in medical care. No longer can clinicians assume that a delirious patient "doesn't seem to be uncomfortable" or "isn't bothering anyone" and so does not require aggressive treatment. Our study further suggests that delirium is not just a disorder that affects patients alone but is in fact a source of great distress for family members and nurses who provide daily medical care. Family members are more distressed about the delirium episodes experienced by their loved ones than the patients themselves. This fact points out the often neglected needs of family members to be included in the delirium treatment plan. Information, education, and reassurance about the nature of delirium and its meaning are critically important aspects of delirium management. Finally, health care providers (nurses in particular) are directly affected by the experience of caring for a delirious patient. The morbidity to staff of caring for a delirious patient extends beyond the extra work caused by replacing intravenous lines or catheters that have been pulled or the striking out (sometimes even biting or stabbing with needles) that can result in physical harm to nurses. Nurses experience significant distress in caring for delirious patients and must also be included in the delirium treatment plan so that they have the information and skills they need to feels prepared to care for this critically ill population of patients. Further research in this area of delirium phenomenology and impact is needed to more fully describe the morbidity and cost of delirium in various medically ill and vulnerable populations.


  REFERENCES

 
TOP
 ABSTRACT
 INTRODUCTION
 METHODS
 RESULTS
 DISCUSSION
 REFERENCES
 

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