Psychosomatics 45:107-113, April 2004
© 2004 The Academy of Psychosomatic Medicine
Family-Perceived Distress From Delirium-Related Symptoms of Terminally Ill Cancer Patients
Tatsuya Morita, M.D.,
Kei Hirai, Ph.D.,
Yukihiro Sakaguchi, Ph.D.,
Satoru Tsuneto, M.D., Ph.D., and
Yasuo Shima, M.D.
Received Oct. 17, 2002; revision received March 5, 2003; accepted May 15, 2003. From Seirei Hospice, Seirei Mikatabara Hospital; the Graduate School of Human Sciences, Osaka University, Osaka, Japan; and the Palliative Care Unit, National Cancer Center Hospital East, Chiba, Japan. Address reprint requests to Dr. Morita, Seirei Hospice, Seirei Mikatabara Hospital, 3453 Mikatabara-cho, Hamamatsu, Shizuoka, 433-8558, Japan; seireihc{at}jt6.so-net.ne.jp (e-mail).
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ABSTRACT
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Delirium is a frequent symptom of terminally ill cancer patients and can cause serious distress to family members. To clarify the degree of emotional distress of family members concerning terminal delirium, a survey of bereaved families was performed. A questionnaire was mailed to 300 bereaved families with a request to rate the frequency and level of their distress for 12 delirium-related symptoms. A total of 195 responses were analyzed (effective response rate=65%). Seventy-four percent and 62% of the family members reported that the patients had symptoms of physical restlessness and mood lability, respectively. Psychotic symptoms, such as hallucinations and delusions, were reported by 35%–37%, and somnolence was reported in 92%. The prevalence of cognitive symptoms (e.g., communication difficulty, memory disturbance) ranged between 50% and 72%. More than two-thirds of the bereaved family members perceived all delirium-related symptoms other than somnolence as distressing or very distressing when they occurred "often" or "very often." For physical restlessness, mood lability, and psychotic symptoms that occurred "sometimes," 27%–36% of the family members had moderate to high levels of distress. The bereaved family members of terminally ill cancer patients experienced high levels of distress from both the agitation and cognitive symptoms of terminal delirium. Multidisciplinary interventions, including the prevention of agitation and the minimization of cognitive impairment, pharmacological or medical treatments, and supportive and psychoeducational approaches for family members, are needed to alleviate family distress.
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INTRODUCTION
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Delirium or cognitive disorders occur in 68%–90% of terminally ill cancer patients just before their death.1–6 Although cognitive impairment can sometimes be labeled as part of the "natural" dying process, delirium-related symptoms can cause great distress in both patients and family members.7–11 Since one of the primary goals of integrated palliative care is to alleviate family suffering, active support for the family members of delirious terminal patients is important. However, to our knowledge, only one pioneer study12 has addressed the potential impact of delirious symptoms on family experiences in a cancer care setting. This prospective observation study of 75 family members of delirious cancer patients revealed that 76% of the family members showed high levels of psychological distress when their family members had delirium symptoms. However, since these study subjects were limited to patients who consulted a psychiatric service and recovered from delirium, these findings cannot be generalized to family members who experienced terminal delirium. Also, since family distress was evaluated with only a single numeric scale to measure overall distress, we cannot determine which symptoms the family members perceived as more or less distressing. Since understanding family distress with terminal delirium is valuable in developing effective care strategies, we performed a nationwide survey of bereaved families to identify the degree of family distress experienced with each delirium-related symptom.
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METHOD
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This was part of a large nationwide mailed survey that investigated bereaved families' evaluation of specialized inpatient palliative care services in Japan. In the second part of the questionnaire, the respondents were asked to report the frequencies and levels of their distress concerning each delirium-related symptom.
Of 82 palliative care units approved as formal members of the Japanese Association of Hospice and Palliative Care Units by the end of 2000, 70 institutions agreed to participate in this survey. Before the survey was conducted, a letter explaining the aims and methods of the study was mailed to 3,097 potential participants (93% of all deaths) with a request to return an enclosed informed consent form. The inclusion criteria for the potential participants were the following: 1) bereaved family members who had lost a patient at one of the participating palliative care units, 2) ages 20 or older, 3) capable of replying to a self-report questionnaire, and 4) no serious psychological distress, as identified by the responsible physicians. Of 3,097 potential participants, 1,184 (38%) returned the written informed consent. We then randomly divided this total group into three groups to perform three different questionnaire surveys. This survey was performed in June 2002 with 300 consenting participants as one of the three divided groups. The ethical and scientific validity were confirmed by the institutional review boards of each hospital.
Questionnaire
The questionnaire (available from the first author) was developed by the study group. The bereaved subjects provided data for sociodemographic characteristics: gender, age, relationship to the deceased, time since patient death, and frequency of visiting the patient in the last week of life. Patient gender and age were collected from medical charts.
The respondents were requested to rate the frequency of 12 delirium-related symptoms (insomnia, somnolence, memory disturbance, thinking difficulty, communication difficulty, disorientation, irrelevant/incoherent speech, hallucinations, delusions, physical restlessness, inappropriate behavior, and mood lability) during the last week of life on a 4-point scale of "not at all," "sometimes," "often," and "very often." These symptoms were selected on the basis of the Memorial Delirium Assessment Scale (Japanese version), the Delirium Rating Scale, and interviews with palliative care nurses and bereaved family members to cover a broad aspect of delirium.13–15 Moreover, the respondents were requested to rate the levels of their distress for each delirium-related symptom on a 5-point scale of "not distressed at all," "not so distressed," "slightly distressed," "distressed," and "very distressed."
The medical terms were paraphrased in the questionnaire so that lay respondents could understand them. The face validity and acceptability of the questionnaire were confirmed by a pilot test on 50 bereaved family members.
Analyses
To make interpretation of the results easy, we clustered the responses about family-perceived distress by multidimensional scaling analysis based on the Euclidean distance model of the stimulus configuration of measures. This statistical method can visualize endorsement similarities by constructing a matrix of correlation coefficients. Kruskal's stress values were used as a measurement of the lack of goodness of fit, and the two-dimensional solution was adopted because of its simplicity, ease of interpretation, and minimum improvement of stress and percent variance accounted for in the three-dimensional solution.
Figure 1 shows the structure of family-perceived distress regarding patients with terminal delirium. We identified four interpretable groups: 1) physical restlessness; 2) mood lability and insomnia; 3) psychotic symptoms, including hallucinations, delusions, and inappropriate behavior; and 4) cognitive symptoms, including somnolence, communication difficulty, memory disturbance, thinking difficulty, disorientation, and irrelevant/incoherent speech. We adopted this model because of good clinical validity, as agreed on by the authors, and consistency with previous findings that neurobehavioral, psychotic, and cognitive symptoms were identified as the underlying structure of the Memorial Delirium Assessment Scale and the Delirium Rating Scale.14,15 All analyses were performed with the Statistical Package for the Social Sciences (version 9.0).
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RESULTS
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Of 300 bereaved family members who gave written informed consent to participate in this study, 208 (69%) returned the questionnaire. Since 13 responses were excluded owing to missing data, 195 responses were ultimately analyzed (effective response rate=65%). Table 1 summarizes the backgrounds of the patients and the bereaved family members.
Table 2 summarizes the prevalence of delirium-related symptoms. Somnolence was observed in almost all patients (92%), while 35%–37% of the family members reported witnessing psychotic symptoms. Physical restlessness and mood lability were reported in 74% and 62%, respectively, and the prevalence of cognitive symptoms ranged between 50% and 72%.
Table 3 and Table 4 show the family-perceived distress of delirium-related symptoms observed "often" or "very often" and those observed "sometimes," respectively. More than two-thirds of the bereaved family members perceived all delirium-related symptoms other than somnolence as "distressing" or "very distressing" when they occurred "often" or "very often." Physical restlessness and mood lability were perceived as "distressing" or "very distressing" by 90% of the family. The percentage of family members who reported somnolence as distressing or very distressing was 34%.
For physical restlessness, mood lability, and psychotic symptoms that occurred sometimes, 27%–36% of the family members had moderate to high levels of distress, while 19%–41% perceived them as "not distressing at all" or "not so distressing." Regarding cognitive symptoms observed sometimes, except somnolence, 15%–25% of the family members perceived them as "distressing" or "very distressing," while 35%–46% perceived them as not distressing at all or not so distressing. Somnolence that occurred sometimes was perceived as "not distressing at all" or "not so distressing" by 65% of the family and as "distressing" or "very distressing" by 4.8%.
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DISCUSSION
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This study revealed that the family members of terminally ill cancer patients frequently experienced delirium-related symptoms with high levels of distress. Agitation symptoms, such as physical restlessness and mood lability, were seen in more than 60% of all patients based on family reports, and they were the most distressing symptoms for family members. This result corresponds to the study by Breitbart et al.12 that identified the delirium subtype of hyperactive delirium as a significant predictor of family distress. These findings indicate a strong need for active intervention for agitation symptoms in palliative care settings. Potential interventions to alleviate family distress related to agitated delirium include the prevention of agitation, pharmacological/medical treatments to decrease the intensity of agitation (antipsychotic medications, symptomatic sedation), and psychological support for family members.7–11 Since several empirical studies have suggested that toxic metabolites of opioids might contribute to the development of agitated delirium16–19 and that structured nursing intervention could prevent delirium or cognitive impairment in geriatric settings,20,21 preventive medical measures (e.g., opioid rotation) with active nursing intervention may be promising in reducing the occurrence of terminal agitation. Also, authorities emphasize that reassurance and a psychoeducational approach for family members may be useful in reducing family fears related to the misinterpretation that agitation is a sign of extreme pain or of the patients "losing their minds."7,9–11 These recommended strategies should be evaluated by future clinical research in terms of family distress.
Psychotic symptoms, such as hallucinations and delusions, were observed in 35%–37% of terminally ill cancer patients and caused serious family distress when they occurred often. The study by Breitbart et al.12 revealed that hallucinations and delusions were significantly associated with distress in patients who recalled the experience of delirium. Thus, active pharmacological treatment is justified for frequent psychotic symptoms from the viewpoint of both patient and family care. On the other hand, for hallucinations and delusions that were observed "sometimes," 41% and 33% of family members perceived them as "not distressing at all" or "not so distressing," while 27% and 29% perceived them as "distressing" or "very distressing," respectively. Therefore, although hallucinations are apparently an "abnormal" phenomenon in usual medical practice, a considerable number of family members felt comfortable with this symptom in the final stage of the patient's life. In hospice care, some practitioners maintain that the "abnormal" experiences of terminal patients, usually labeled as hallucinations and delusions, may be the symbolic expressions of the patient's awareness that he or she is actually dying and emphasize the role of medical professionals in helping the family understand this symbolic communication.9,11,22 Some clinicians also recognize that some hallucinations and delusions involving dead relatives and the world after death are not clinically distressing for patients but can be even comforting and pleasant.9,22 This view is partially supported by a small qualitative study that has revealed that some patients reported experiences of hallucinations as pleasing or enjoyable after recovery.23 However, a larger recent study12 revealed that 100% and 95% of delirious patients who had hallucinations and delusions expressed high levels of distress after recovery. These complex findings indicate the strong need for more research to determine appropriate care for mild psychotic symptoms: it should be clarified whether each specific hallucination or delusion does or does not cause actual distress for patients and family members. In the meantime, we believe highly individualized care is clinically required in this situation.
Cognitive symptoms, such as somnolence, communication difficulty, and memory disturbance, occurred frequently in the terminal phase of cancer, ranging from 50% to 92%. This suggests that reduced cognitive functions can be interpreted as a part of the "natural" dying process. Nonetheless, 73%–85% of family members perceived them as "distressing" or "very distressing" when they occurred "often" or "very often." Even when the symptoms were observed sometimes, 15%–25% still perceived them as "distressing" or "very distressing." This result supports the "good death" concept that the maintenance of intellectual activity is one of the most important areas for a "good death."24 Therefore, clinicians should perform integrated interventions to minimize cognition impairment, including avoidance of unnecessary psychomimetic medications, active nursing care, and pharmacological treatment, such as methylphenidate and low-dose antipsychotics, if appropriate.7–9,11,25,26 However, empirical evidence indicates that the complete maintenance of mental capacity is difficult in the final stage of cancer.27,28 Clinical interventions should, therefore, focus on alleviating family distress by educating the public about the natural dying process, helping the family complete meaningful communication in the earlier stages of illness, facilitating grief and providing emotional support, and helping the family discover meaning or effective coping strategies in caring for cognitively impaired patients (e.g., physical contact).
Despite several strengths, including our success in obtaining a large nationwide study group and a separate examination of broad delirium symptoms, this study has some limitations. First, because informed consent was obtained from a limited number of potential participants (38%) and the response rate was relatively low (65%), this study group might not be representative of all of the groups we wish to investigate. Second, we did not perform any formal procedures to confirm a diagnosis of delirium because of practical difficulty in requiring them for all participating institutions, and the bereaved family members rated the symptoms without interrater reliability and external validity testing. Therefore, some symptoms might have been interpreted differently among the respondents (e.g., they could not differentiate physical restlessness that was not associated with delirium from delirium-induced restlessness). We believe this is not a fatal flaw of this study because there are no validated instruments to measure delirium severity that are specifically designed for family members, empirical studies suggest that a large part of (up to 90%) of cancer patients develop terminal delirium,1–6 and the fundamental focus of this research was on the family's perspective. Third, direct comparisons of our data with those in the study by Breitbart et al.12 are difficult because of inconsistency in the methods of measuring family distress (overall or specific for each symptom), targeted study groups (reversible or terminal delirium), treatment goal (reversal of delirium or comfort), and the treatment settings (acute cancer care or inpatient hospice care). Fourth, there is an apparent recall bias in family reports. Finally, since the study subjects were all Japanese, the findings cannot be automatically generalized to other ethnic groups.
In conclusion, the bereaved family members of terminally ill cancer patients experienced high levels of distress for both agitation and the cognitive symptoms of terminal delirium. Multidisciplinary interventions to alleviate family distress, including the prevention of agitation and the minimization of cognitive disturbance, pharmacological/medical treatment, and psychoeducational approaches for family members, are necessary. Such treatment strategies should be evaluated by clinical research by using the degree of agitation and cognition symptoms of delirium13–15 and the emotional distress of family members as the main outcomes.
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ACKNOWLEDGMENTS
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Performed in collaboration with the Quality Assurance Committee of the Japanese Association of Hospice and Palliative Care Units and supported by Health and Labor Sciences Research grants (2000–2002).
The authors thank the study participants and the members of the Japanese Association of Hospice and Palliative Care Units; they also thank Mariko Shiozaki, Yukiko Tatsumi, and Masumi Tozawa for technical assistance.
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ABSTRACT
INTRODUCTION
