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

Abstract

Background: 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. Method: Phenomenolog-ical 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. Results: 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. Conclusions: The main finding that delirium leads to distress for both patients and care-givers 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.

Delirium and agitation at the end of life

“…37 Furthermore, a qualitative study of 37 family care givers found that many thought that analgesics caused the delirium. 36 The same study found that distress was lowest in care givers who were educated about the risk of delirium before it occurred.…”

“…36 The hypoactive form is often missed by clinicians, and family members may be better placed to report the subtle changes in presentation that may herald its onset. A detailed observational study of the experience of delirium in inpatients with cancer found that mean scores for distress were higher in the spouses and family care givers who had witnessed the delirium than in affected patients.…”

The cancer family caregiving experience: An updated and expanded conceptual model

“…Since 2000, some researchers have investigated these symptoms (Keefe et al, 2003; Kurtz et al, 2004), while others have identified an even broader range of patient symptoms that distress family caregivers. Examples include anxiety (Cotrim and Pereira, 2008), neuropsychiatric disorders (Sherwood et al, 2006), delirium (Buss et al, 2007; Cohen et al, 2009), and fatigue (Fletcher et al, 2009; Passik and Kirsh, 2005). Another patient illness-related stressor is a concurrent chronic condition.…”

Conceptualising psychological distress in families in palliative care: Findings from a systematic review

“…Braun [65,66,77,71] Unitary construct. Non-iteraƟve interacƟon [43,56,58,59,60,61,69,72,74,76,78,79,80] Systemic construct. Two way, iteraƟve interacƟon within dyads only [30,54,55,57,62,63,64,67,68,70,73,75] Systemic construct.…”

“…58% attrition rate. The study was drawn from a larger study of pain in metastatic breast cancer patients.Cohen et al;80 2009; USA Patients and caregivers both described distress during the episode of delirium. Patients described distress related to the experience of hallucinations, while caregivers described being distressed from their perceptions of distress experienced by the patients.…”