From the results of this study, we generated a potentially useful care strategy for terminal delirium: respect the patients' subjective world, treat patients as the same persons as before, explore unmet physiological needs behind delirium symptoms, consider ambivalent emotions when using psychotropics, coordinate care to achieve meaningful communication according to changes in consciousness levels during the day, facilitate preparations for the patients' death, alleviate the feelings of being a burden on others, relieve family's physical and psychological burden and information support.
Although delirium is a common complication in terminally ill cancer patients and can cause considerable distress for family members, little is known about effective care strategies for terminal delirium. The primary aims of this study were 1) to clarify the distress levels of bereaved families and their perceived necessity of care; and 2) to explore the association between these levels and family-reported professional care practice, family-reported patient behavior, and their interpretation of the causes of delirium. A multicenter questionnaire survey was conducted on 560 bereaved family members of cancer patients who developed delirium during their final two weeks in eight certified palliative care units across Japan. We obtained 402 effective responses (response rate, 72%) and, as 160 families denied delirium episodes, 242 responses were analyzed. The bereaved family members reported that they were very distressed (32%) and distressed (22%) about the experience of terminal delirium. On the other hand, 5.8% reported that considerable or much improvement was necessary, and 31% reported some improvement was necessary in the professional care they had received. More than half of the respondents had ambivalent wishes, guilt and self-blame, and worries about staying with the patient. One-fourth to one-third reported that they felt a burden concerning proxy judgments, burden to others, acceptance, and helplessness. High-level emotional distress and family-perceived necessity of improvement were associated with a younger family age; male gender; their experience of agitation and incoherent speech; their interpretation of the causes of delirium as pain/physical discomfort, medication effects, or mental weakness/death anxiety; and their perception that medical staff were not present with the family, not respecting the patient's subjective world, not explaining the expected course with daily changes, and not relieving family care burden. In terminal delirium, a considerable number of families experienced high levels of emotional distress and felt some need for improvement of the specialized palliative care service. Control of agitation symptoms with careful consideration of ambivalent family wishes, providing information about the pathology of delirium, being present with the family, respecting the patient's subjective world, explaining the expected course with daily changes, and relieving family care burden can be useful care strategies.
The combined intervention of introducing the specialized palliative care service, using screening tools and providing on-demand specialized palliative care service, was feasible as part of the routine clinical practice for all cancer patients starting chemotherapy. It might be useful in identifying patients with under-recognized palliative care needs and referring them to the specialized palliative care service at the appropriate time.
The components of hospital PCT activities were successfully measured using the Standard Format for Reporting Hospital PCT Activity. The results of this study and the format for reporting hospital PCT activity could be effective in improving hospital PCT practice and for the education of new hospital PCT members.
Late referral to a specialized palliative care service hinders quality symptomatic management. The aim of this article is to describe the feasibility and clinical usefulness of screening for patient discomfort as the fifth vital sign using an electronic medical recording system to identify patients with undertreated physical symptoms. For the electronic medical recording system, all admitted patients received routine nurse assessment of discomfort (defined as any physical symptom) at every vital signs check using Item 2 of the Support Team Assessment Schedule Japanese version (STAS). All medically treated cancer patients admitted to seven oncology units were automatically screened at one-week intervals. Positive screening was defined as a STAS score of 2 or more at least two times during the previous week. For each patient identified by screening, a palliative care team reviewed the medical record and provided written recommendations when other treatments might improve the patient's physical symptoms. Of 629 patients screened, 87 (14%) initially met the positive screening criteria. Fifteen (17%) were false positive due to psychiatric symptoms without physical symptoms or due to misrecording. Of 72 cases with actual discomfort, 33 had already been referred to the palliative care team, 14 had received adequate palliative care as determined by the palliative care team, 14 had self-limiting transient discomfort, and one patient died before the screening day. In the remaining 10 cases (11% of symptomatic patients, 1.7% of all screened patients), the palliative care team recommended potentially useful interventions for symptom control; seven patients were referred to the palliative care team within one week. The time required for all screening processes was about 30 minutes per week. This experience demonstrates that screening for patient discomfort as the fifth vital sign using an electronic medical recording system can be successfully implemented and may be useful in facilitating early referral of distressing patients to the specialized palliative care service.
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