Abstract and Introduction
Abstract
Delirium is a state of confusion that occurs in up to 90% of patients facing end-of-life. Despite its prevalence, there is a paucity of data that describes the prodrome to delirium. Family and caregivers are key observers of the phenomenology of delirium and often recall subtle signs and symptoms that herald the delirious episode. The objective of this study was to describe caregiver observations regarding the onset, characteristics, and progression of the predelirium state in hospice patients diagnosed with delirium. A purposive sample of 10 caregivers of hospice patients took part in private, semistructured, audiotaped interviews. The interviews were transcribed verbatim and analyzed using the Straussian approach to grounded theory. Six categories of commonalities emerged: physically declining, cognitively/psychologically declining, withdrawing, end-of-life awareness, deteriorating sleep pattern, and suffering. A process model was created that illustrates the temporal progression of sleep deterioration in the presence of overall decline, which leads to the diagnosis of delirium. In addition, the model illustrates the experience of suffering, which is woven throughout this temporal decline, becoming increasingly magnified as delirium progresses. These findings provide insight regarding early signs and symptoms of emerging delirium.
Introduction
Delirium is a complex syndrome with multiple etiologies characterized by fluctuating disturbances in consciousness, attention, memory, thought, and perception. Delirium is nearly ubiquitous within medical settings and is the most common psychiatric disorder among the cancer patient population. It is present in most patients at the end of life, associated with poorer survival, and is an independent predictor of mortality. Despite the prevalence and significance of delirium, it remains underdiagnosed and undertreated. Delirium can accelerate the end-of-life process, despite being potentially reversible in as many as 50% of cases. In part, inconsistent assessment and diagnosis may limit the clinician's ability to recognize the underlying pathogenesis of delirium. Unfortunately, delirium is often not diagnosed until in its fulminate state, and there is a paucity of data that describes or detect the prodromal phase of delirium. There is a need for studies that clarify the risk factors and pathogenesis of delirium in order to provide earlier detection, prevent further worsening in reversible cases, and provide a strategy that reduces the risk of developing delirium. Although delirium in certain cases may be linked to specific etiologies, such as infection, sleep disturbance, medications, dehydration, urinary retention, pain, or constipation, many delirious patients have no clear toxic or metabolic abnormality. A more complete description may require acknowledgement of less definable causes or contributing factors.
Family and caregivers are key observers to the phenomenology of delirium and often recall subtle signs and symptoms that herald delirious episodes. They are often witness to the earliest manifestations and challenges of delirium, such as nocturnal agitation and behavioral disturbances, and may score even higher than their delirious loved ones on measures of distress. Caregivers therefore are in the best position to alert health care providers to early signs and symptoms of delirium. The caregiver perspective also highlights the fact that delirium has impact beyond the patient and is a source of suffering for caregivers as well as their loved ones.
The purposes of this study were to explore the development and progression of delirium experienced by hospice patients and to generate a theoretical model that describes the prodrome to delirium as observed by caregivers. Grounded theory analysis was used to establish categories and characterize the progression of observed patient changes leading to the development of delirium in an effort to more clearly define the prodromal phase of delirium.