پریشانی خانواده ادراک شده از علائم مرتبط با دلیریوم برای علاج ناپذیری بیمار مبتلا به سرطان

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.

Delirium or cognitive disorders occur in 68%–90% of terminally ill cancer patients just before their death.1., 2., 3., 4., 5. and 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., 8., 9., 10. and 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.