Family experience of palliative sedation therapy: proportional vs. continuous deep sedation

• Published in: Supportive care in cancer Vol. 30; no. 5; pp. 3903 - 3915
• Main Authors: Imai, Kengo, Morita, Tatsuya, Mori, Masanori, Yokomichi, Naosuke, Yamauchi, Toshihiro, Miwa, Satoru, Inoue, Satoshi, Naito, Akemi Shirado, Masukawa, Kento, Kizawa, Yoshiyuki, Tsuneto, Satoru, Shima, Yasuo, Otani, Hiroyuki, Miyashita, Mitsunori
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-05-2022; Springer; Springer Nature B.V
• Subjects: Anesthesia; Communication; Deep Sedation - methods; Families & family life; Family; Family corporations; Family-owned business enterprises; Humans; Hypnotics and Sedatives - therapeutic use; Medical care; Medical personnel; Medicine; Medicine & Public Health; Mental health; Midazolam - therapeutic use; Neoplasms - therapy; Nursing; Nursing care; Nursing Research; Oncology; Original Article; Pain Medicine; Palliative care; Palliative Care - methods; Palliative treatment; Patient satisfaction; Quality management; Quality of care; Rehabilitation Medicine; Surveys; Surveys and Questionnaires; Terminal Care - methods; Unconsciousness; Family; Experience; Palliative sedation; Proportional sedation; Protocol; Continuous deep sedation
• ISSN: 0941-4355; 1433-7339
• DOI: 10.1007/s00520-021-06745-1

Purpose
Some patients experience intense symptoms refractory to intensive palliative care, and palliative sedation is sometimes used. Palliative sedation may be classified into proportional and continuous deep sedation (CDS). The primary aim of this study was to compare family experience between families of patients who received proportional or CDS.
Methods
A multicenter questionnaire survey was conducted involving bereaved families of cancer patients who received proportional or CDS based on a sedation protocol. Overall evaluation of sedation (satisfaction, family-perceived distress, appropriateness of timing, and patient distress) and 13-item family concerns, good death, satisfaction with care, depression, quality of care, unfinished business, and balance between symptom relief and maintaining communication were measured.
Results
Among the 2120 patients who died, 222 patients received a continuous infusion of midazolam. A sedation protocol was used in 147 patients, and questionnaires were sent to 124 families. A total of 78 responses were finally returned (proportional, 58 vs. CDS, 20). There were no significant differences in the overall evaluation, family concerns, total score of good death, satisfaction, depression, or balance between symptom relief and maintaining communication. On the other hand, some quality of care items, i.e., relationship with medical staff (
P
 < 0.01), physical care by nurses (
P
 = 0.04), and coordination and consistency (
P
 = 0.04), were significantly better in the CDS group than in the proportional sedation group. Family-reported unfinished business was also better in the CDS group, with marginal significance.
Conclusions
Family experience of CDS was not less favorable than proportional sedation, and actually rated more favorably for some elements of quality of care and unfinished business.