Delirium-related Distress Research Articles

Core outcome set for studies evaluating interventions to prevent or treat delirium in long-term care older residents: international key stakeholder informed consensus study.

Trials of interventions to prevent or treat delirium in older adults resident in long-term care settings (LTC) report heterogenous outcomes, hampering the identification of effective management strategies for this important condition. Our objective was to develop international consensus among key stakeholders for a core outcome set (COS) for future trials of interventions to prevent and/or treat delirium in this population. We used a rigorous COS development process including qualitative interviews with family members and staff with experience of delirium in LTC; a modified two-round Delphi survey; and virtual consensus meetings using nominal group technique. The study was registered with the Core Outcome Measures in Effectiveness Trials (COMET) initiative (https://www.comet-initiative.org/studies/details/796). Item generation identified 22 delirium-specific outcomes and 32 other outcomes from 18 qualitative interviews. When combined with outcomes identified in our earlier systematic review, and following an item reduction step, this gave 43 outcomes that advanced to the formal consensus processes. These involved 169 participants from 12 countries, and included healthcare professionals (121, 72%), researchers (24, 14%), and family members/people with experience of delirium (24, 14%). Six outcomes were identified as essential to include in all trials of interventions for delirium in LTC, and were therefore included in the COS. These are: 'delirium occurrence'; 'delirium related distress'; 'delirium severity'; 'cognition including memory', 'admission to hospital' and 'mortality'. This COS, endorsed by the American Delirium Society and the European and Australasian Delirium Associations, is recommended for use in future clinical trials evaluating delirium prevention or treatment interventions for older adults residing in LTC.

Patient recall of intensive care delirium: A qualitative investigation.

Many patients in the Intensive Care Unit (ICU) experience delirium. Understanding the patient perspective of delirium is important to improve care and reduce suffering. The aim of our study was to investigate the subjective patient experience of delirium, delirium-related distress, and delirium management in ICU. Our study had a qualitative multicenter design applying individual interviews and thematic analysis. Participants were critically ill adult patients that were determined delirium positive according to validated delirium screening tools during ICU admission. The interviews were conducted after ICU discharge when patients were delirium-free as assessed by the "Rapid clinical test for delirium" (4AT) and able to participate in an interview. We interviewed 30 patients choosing the main themes deductively: Delirium experience; Delirium related distress; and Delirium management. Despite variations in recollection detail, ICU survivors consistently reported delirium-related distress during and after their ICU stay, manifesting as temporal confusion, misinterpretations, and a sense of distrust towards ICU staff. Delusions were characterized by a blend of factual and fictional elements. Impaired short-term memory hindered communication and intensified feelings of isolation, neglect, and loss of control. The ICU survivors in our study recalled delirium as an unpleasant and frightening experience, often leading to delirium-related distress during and after their ICU stay, indicating the necessity for enhanced assessment and treatment.

Three key areas in progressing delirium practice and knowledge: recognition and relief of distress, new directions in delirium epidemiology and developing better research assessments.

Delirium presents formidable challenges: it affects one in four of older hospitalised adults, greatly elevates the risk of multiple short- and long-term complications including dementia and causes significant distress. Delirium care remains generally poor. Yet, there are clear grounds for optimism; the last decade has seen impactful policy advances and a tripling of research output. Here, we highlight three linked areas which have strong potential to transform delirium practice and knowledge in the near term. Delirium-related distress is strikingly underrepresented in practice guidance and research. Proactive recognition combined with effective clinical responses based on good communication provides a critical and largely untapped opportunity to improve care. Delirium epidemiology research is well positioned to produce novel insights through advanced prospective designs in populations such as emergency medical patients with detailed pre-, intra- and post-delirium assessments allied with fluid, imaging and other biomarkers. Research-grade assessment of delirium currently involves a chaotic array of tools, methods and diagnostic algorithms. Areas for development: expand and analytically distinguish the range of features assessed (including distress), optimise feature assessment including use of validated neuropsychological tests where possible, produce standardised algorithms which articulate explicit pathways from features to diagnosis, and create new fine-grained approaches to the measurement of severity. Delirium practice and knowledge show accelerating growth. This is encouraging but much of the necessary progress is still to come. Innovation in these three highlighted areas, as well as many others, will open up exciting possibilities in enhancing the care of patients with this common and often devastating condition.

Personalized sedation goal for agitated delirium in patients with cancer: Balancing comfort and communication.

Agitated delirium is common and highly distressing. Medications are often needed to reduce agitation, but it is unclear what the desired level of sedation is. This study assessed personalized sedation goals (PSGs) and their predictors for patients in a delirium clinical trial and in clinical vignettes. This was a preplanned secondary analysis of a double-blind randomized clinical trial examining the sedative effect of chlorpromazine and/or haloperidol in patients with agitated delirium. At the baseline, caregivers and nurses were independently asked to select the PSG for the trial patient from 5 choices corresponding to Richmond Agitation Sedation Scale (RASS) scores of 0 or higher (no sedation), -1 to -2, -3, -4, and -5 (deep sedation). Respondents also selected a PSG for 6 vignettes that differed by the level of agitation, ability to communicate, and survival. Forty-two caregivers and 39 nurses answered questions regarding PSGs. For the trial patient, caregivers preferred RASS scores of -1 to -2 most often (36%), whereas nurses preferred an RASS score of -3 most often (51 %). Caregivers were significantly more likely than nurses to choose lighter sedation (odds ratio [OR], 4.8; P = .01) despite reporting greater delirium-related distress (P = .0006). Patients were undersedated 33% to 53% of the time and oversedated 0% to 15% of the time according to the PSG response criteria. In the case vignettes, deeper sedation was preferred by nurses (P < .0001) and for patients who were unable to communicate (OR, 3.1-4.4; P < .0001) and had a shorter life expectancy (OR, 1.7; P = .002). Caregivers often preferred lighter sedation than nurses. Many patients were undersedated in comparison with caregivers' PSGs, and this highlights room for improvement. In the last days of life, many patients with cancer develop delirium and become restless/agitated; this can be highly distressing. Caregivers and physicians alike are often concerned about the use of sedatives for agitated delirium and try to find a balance between maximizing comfort and maintaining communication. This study examined the concept of a personalized sedation goal for setting an individualized target for the level of sedation. Caregivers often preferred lighter sedation than nurses. Many patients were undersedated in comparison with caregivers' stated goals, and this highlights room for improvement.

Codesigning an Intervention to Minimise the Distress Related to Postoperative Delirium for Patients and Relatives; A Mixed Methods Stepwise Approach

Introduction: Postoperative delirium is common and causes distress in patients and relatives with potential impact on long-term psychological health. No standardised approach to minimising delirium related distress exists. This study describes a mixed-methods, stepwise approach to co-designing an intervention to minimise distress related to postoperative delirium.

Development and validation of the Terminal Delirium-Related Distress Scale to assess irreversible terminal delirium.

There is no tool to appropriately assess terminal delirium, including the natural terminal course. The objective of this study was to develop an evaluation scale to assess distress from irreversible terminal delirium and to examine the validity of the scale. Based on previous qualitative analysis and systematic literature searches, we carried out a survey regarding the views of bereaved families and developed a questionnaire. We extracted items that bereaved families regarded as important and constructed an evaluation scale of terminal delirium. Then, we applied the questionnaire in a cross-sectional questionnaire survey of bereaved relatives of cancer patients who were admitted to a hospice or a palliative care unit. We developed the Terminal Delirium-Related Distress Scale (TDDS), a 24 item questionnaire consisting of five subscales (support for families and respect for a patient, ability to communicate, hallucinations and delusions, adequate information about the treatment of delirium, and agitation and restlessness). Two hundred and eighty-one bereaved relatives participated in the validation phase. The construct validity was shown to be good by repeated factor analysis. Convergent validity, confirmed by the correlation between the TDDS and the Care Evaluation Scale (r = 0.651, P < 0.001), was also good. The TDDS had good internal consistency (Cronbach's alpha coefficient for all 24 items = 0.84). This study showed that the TDDS is a valid and feasible measure of irreversible terminal delirium.

Optimal goal of management of delirium in end-of-life cancer care.

Delirium is a highly prevalent neuropsychiatric problem in patients with advanced cancer. Delirium that develops in the last days and hours of life is not only very common, but also distressing both for patients and their families; 1 Morita T Akechi T Ikenaga M et al. Terminal delirium: recommendations from bereaved families' experiences. J Pain Symptom Manage. 2007; 34: 579-589 Summary Full Text Full Text PDF PubMed Scopus (79) Google Scholar , 2 Breitbart W Gibson C Tremblay A The delirium experience: delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/caregivers, and their nurses. Psychosomatics. 2002; 43: 183-194 Crossref PubMed Scopus (382) Google Scholar therefore, appropriate management of terminal delirium is essential. Among the various symptoms of delirium, persistent agitation or restlessness, are considered to cause the most distress to patients. Although sufficient relief from distressing symptoms is indispensable for good palliative care, patients who are terminally ill might have needs beyond just symptom management—eg, to achieve a so-called good death, clear decision-making in relation to care, adequate preparation for death, a sense of completion, a feeling of having made a contribution to others' wellbeing, and affirmation of themselves as a whole person are as important to the patient as appropriate symptom management. 3 Steinhauser KE Clipp EC McNeilly M Christakis NA McIntyre LM Tulsky JA In search of a good death: observations of patients, families, and providers. Ann Intern Med. 2000; 132: 825-832 Crossref PubMed Scopus (768) Google Scholar Therefore, in addition to the alleviation of distressing symptoms, the maintenance of mental capacity, including the ability to communicate with others—especially significant others—is therefore essential. Previous studies 4 Uchida M Morita T Ito Y Koga K Akechi T Goals of care and treatment in terminal delirium: a qualitative study of the views and experiences of healthcare professionals caring for patients with cancer. Palliat Support Care. 2019; 17: 403-408 Crossref PubMed Scopus (4) Google Scholar have shown that achieving a balance between symptom alleviation and maintenance of communication capacity is important in the goals of care and treatment in terminal delirium. Thus, medical staff should consider and balance the various aspects affecting the values and quality of life of patients with terminal illnesses when individualised optimal care is needed. Neuroleptic strategies for terminal agitation in patients with cancer and delirium at an acute palliative care unit: a single-centre, double-blind, parallel-group, randomised trialOur data provide preliminary evidence that the three strategies of neuroleptics might reduce agitation in patients with terminal agitation. These findings are in the context of the single-centre design, small sample size, and lack of a placebo-only group. Full-Text PDF

Measuring the distress related to delirium in older surgical patients and their relatives.

Delirium is a common postoperative complication with implications on morbidity and mortality. Less is known about the psychological impact of delirium in patients and relatives. This study aimed to quantitatively describe distress related to postoperative delirium in older surgical patients and their relatives using the distress thermometer, examine the association between degree of distress and features of delirium on the Delirium Rating Scale (DRS), and examine the association between recall of delirium and features of delirium on the DRS. This prospective study recruited postoperative patients and their relatives following delirium. The distress thermometer was used to examine the degree of distress pertaining to delirium and was conducted during the hospitalization on resolution of delirium and then at 12-month follow-up. Associations between delirium-related distress in patient and relative participants and severity and features of delirium (DRS) were examined. One hundred two patients and 49 relatives were recruited. Median scores on the distress thermometer in patients who recalled delirium were 8/10. Relatives also showed distress (median distress thermometer score of 8/10). Associations were observed between severity and phenotypic features of delirium (delusions, labile affect, and agitation). Distress persisted at 12months in patients and relatives. Distress related to postoperative delirium can be measured using a distress thermometer. Alongside approaches to reduce delirium incidence, interventions to minimize distress from postoperative delirium should be sought. Such interventions should be developed through robust research and if effective administered to patients, relatives, or carers.

Effect of Lorazepam With Haloperidol vs Haloperidol Alone on Agitated Delirium in Patients With Advanced Cancer Receiving Palliative Care

ImportanceThe use of benzodiazepines to control agitation in delirium in the last days of life is controversial.ObjectiveTo compare the effect of lorazepam vs placebo as an adjuvant to haloperidol for persistent agitation in patients with delirium in the setting of advanced cancer.Design, Setting, and ParticipantsSingle-center, double-blind, parallel-group, randomized clinical trial conducted at an acute palliative care unit at MD Anderson Cancer Center, Texas, enrolling 93 patients with advanced cancer and agitated delirium despite scheduled haloperidol from February 11, 2014, to June 30, 2016, with data collection completed in October 2016.InterventionsLorazepam (3 mg) intravenously (n = 47) or placebo (n = 43) in addition to haloperidol (2 mg) intravenously upon the onset of an agitation episode.Main Outcomes and MeasuresThe primary outcome was change in Richmond Agitation-Sedation Scale (RASS) score (range, −5 [unarousable] to 4 [very agitated or combative]) from baseline to 8 hours after treatment administration. Secondary end points were rescue neuroleptic use, delirium recall, comfort (perceived by caregivers and nurses), communication capacity, delirium severity, adverse effects, discharge outcomes, and overall survival.ResultsAmong 90 randomized patients (mean age, 62 years; women, 42 [47%]), 58 (64%) received the study medication and 52 (90%) completed the trial. Lorazepam + haloperidol resulted in a significantly greater reduction of RASS score at 8 hours (−4.1 points) than placebo + haloperidol (−2.3 points) (mean difference, −1.9 points [95% CI, −2.8 to −0.9]; P < .001). The lorazepam + haloperidol group required less median rescue neuroleptics (2.0 mg) than the placebo + haloperidol group (4.0 mg) (median difference, −1.0 mg [95% CI, −2.0 to 0]; P = .009) and was perceived to be more comfortable by both blinded caregivers and nurses (caregivers: 84% for the lorazepam + haloperidol group vs 37% for the placebo + haloperidol group; mean difference, 47% [95% CI, 14% to 73%], P = .007; nurses: 77% for the lorazepam + haloperidol group vs 30% for the placebo + haloperidol group; mean difference, 47% [95% CI, 17% to 71%], P = .005). No significant between-group differences were found in delirium-related distress and survival. The most common adverse effect was hypokinesia (3 patients in the lorazepam + haloperidol group [19%] and 4 patients in the placebo + haloperidol group [27%]).Conclusions and RelevanceIn this preliminary trial of hospitalized patients with agitated delirium in the setting of advanced cancer, the addition of lorazepam to haloperidol compared with haloperidol alone resulted in a significantly greater reduction in agitation at 8 hours. Further research is needed to assess generalizability and adverse effects.Trial Registrationclinicaltrials.gov Identifier: NCT01949662

Lorazepam as an adjuvant to haloperidol for agitated delirium at the end of life: A double-blind randomized controlled trial.

10003 Background: Agitated delirium is a highly distressing neuropsychiatric syndrome common in the last days of life. The use of benzodiazepines for agitated delirium is highly controversial. We compared the effect of lorazepam versus placebo as an adjuvant to haloperidol for persistent agitated delirium. Methods: In this double-blind trial, we randomly assigned patients with advanced cancer admitted to an acute palliative care unit with agitated delirium despite scheduled haloperidol to either lorazepam 3 mg IV or placebo, in addition to haloperidol 2 mg IV upon the onset of agitation. The primary outcome was the Richmond Agitation Sedation Scale (RASS) over the first 8 hours, ranging from -5 (unarousable) to +4 (combative). Secondary endpoints were rescue neuroleptic use, perceived comfort, delirium-related distress, adverse effects and overall survival. 26 patients per arm provided 80% power to detect a between arm difference of 0.5 effect size in mean RASS with a=5%. We used the Wilcoxon Rank Sum test for primary comparison. Results: 52 of 58 (90%) patients who received the medications completed 8 h of observation. RASS decreased significantly within 30 min of treatment in both arms (Table). The lorazepam arm was associated with significantly greater reduction of RASS (Table), less rescue neuroleptics (mean haloperidol equivalent dose 1 mg v. 3 mg, P=0.02), and greater comfort as perceived by blinded caregivers (84% v. 37%, P=0.007) and nurses (77% v. 30%, P=0.005) compared to placebo. We found no significant between-group differences in delirium-related distress, adverse effects and overall survival (median 68 v. 73 h, P=0.56). Conclusions: The combination of lorazepam/haloperidol resulted in rapid and significant reduction of agitation compared to haloperidol alone. Our study supports the judicious use of single dose lorazepam/haloperidol for persistent agitated delirium. Clinical trial information: NCT01670097. [Table: see text]

Delirium related distress in family: A non-systematic review

IntroductionDelirium is a common neuropsychiatric syndrome, particularly in elderly hospitalized patients, and is associated with an increase in morbidity and mortality. Although these negative consequences are well documented, only a few studies describe the experience of delirium from the families’ perspective.AimsTo analyze studies regarding the experience and distress caused by delirium in the families/caregivers of adult/elderly hospitalized patients.MethodsA non-systematic review of published articles until October 2015 in the database PubMed was carried out. The keyword “Delirium” was combined with: “experience”, “distress”, “anxiety” and “family”, “carer” and “relatives”. Inclusion criteria were: standardized diagnosis of delirium, systematic/prospective assessment of distress level. Clinical cases were excluded.ResultsSixteen studies met the inclusion criteria for analysis. In most of them, family members (mostly younger) showed high levels of distress, even higher than health care professionals and patients. Several predictors of family distress were found, including poor functional status, psychomotor agitation, delusions, emotional lability, incoherent speech, inattention and disorientation. Higher distress was associated with long-term consequences (e.g. generalized anxiety). In the qualitative research, family members interpreted delirium as a sign of approaching death, result of pain/discomfort or an effect of medication. In addition, distress was associated with rapid and unexpected changes or unable to recognize the loved ones.ConclusionsDelirium in patients was associated with significant distress in family members. These findings underline the importance of providing information and the development of appropriate supportive and psychoeducational interventions in order to help families throughout this process and reduce the associated distress. This work is supported by FCT (SFRH/BPD/103306/2014).Disclosure of interestThe authors have not supplied their declaration of competing interest.

Delirium-Related Distress in Caregivers: A Study From a Tertiary Care Centre in India

To study the caregiver's distress with symptoms of delirium. Consenting adult caregivers (>18 years of age) of patients with delirium were evaluated for the distress due to symptoms of delirium. The study included 72 primary caregivers of patients with delirium. Symptoms of delirium that led to severe or very severe distress in more than two thirds of the caregivers included decreased sleep, increased motor activity, attempts to remove intravenous lines, tubings, etc., and attempts to get out of bed when they were actually required to lie down. Overall experience of delirium was very distressing for the caregivers.

Delirium in Advanced Cancer Leading to Distress in Patients and Family Caregivers

Information is limited about the experiences of delirium among patients with advanced cancer and their caregivers, which makes designing interventions to relieve delirium-related distress difficult. To better understand the experience and thus permit the design of effective interventions, we collected and analyzed data from patients with advanced cancer who had recovered from delirium and their family caregivers. Phenomenological interviews were conducted separately with 37 caregivers and 34 patients. One investigator reviewed verbatim transcripts of the audio-taped interviews to identify themes, which the research team confirmed. Most patients and all caregivers had vivid memories of the experience; their descriptions were consistent. Most also attributed the confusion to pain medication. Caregivers had concerns about how best to help patients, patients' imminent deaths, and their own well-being. The main finding that delirium leads to distress for both patients and caregivers indicates the importance of recognizing, treating, and, if possible, preventing delirium in this population. Concerns about pain medications also indicate the need to educate patients and caregivers about symptom management. Caregivers also need emotional support.

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

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.