Family experience with palliative sedation therapy for terminally ill cancer patients

Abstract

Symptomatic sedation is often required in terminally ill cancer patients, and could cause significant distress to their family. The aims of this study were to clarify the family experience during palliative sedation therapy, including their satisfaction and distress levels, and the determinants of family dissatisfaction and high-level distress. A multicenter questionnaire survey assessed 280 bereaved families of cancer patients who received sedation in 7 palliative care units in Japan. A total of 185 responses were analyzed(response rate, 73%). The families reported that 69% of the patients were considerably or very distressed before sedation. Fifty-five percent of the patients expressed an explicit wish for sedation, and 89% of families were clearly informed. Overall, 78% of the families were satisfied with the treatment, whereas 25% expressed a high level of emotional distress. The independent determinants of low levels of family satisfaction were: poor symptom palliation after sedation, insufficient information-giving, concerns that sedation might shorten the patient's life, and feelings that there might be other ways to achieve symptom relief The independent determinants of high levels of family distress were: poor symptom palliation after sedation, feeling the burden of responsibility for the decision, feeling unprepared for changes in the patient's condition, feeling that the physicians and nurses were not sufficiently compassionate, and shorter interval to patient death. Palliative sedation therapy was principally performed to relieve severe suffering based on family and patient consent. Although the majority of families were comfortable with this practice, clinicians should minimize family distress by regular monitoring of patient distress and timely modification of sedation protocols, providing sufficient information, sharing the responsibility of the decision, facilitating grief and providing emotional support.

End-of-Life Delirium: Issues Regarding Recognition, Optimal Management, and the Role of Sedation in the Dying Phase

“…Throughout the process of palliative sedation, ongoing emotional support and frequent information should be provided to both the family and the health care team (118)(119)(120)(121).…”

Concerns of family members of patients receiving palliative sedation therapy

“…This study was an additional analysis of free comments described by family members in a multicenter questionnaire survey [5]. The methodology of the original study was described in detail elsewhere [5].…”

“…The methodology of the original study was described in detail elsewhere [5]. We initially identified 23 consecutive palliative care units as potential participating institutions that met the following criteria: (1) formally approved by the Japanese Association of Hospice and Palliative Care Units, (2) having 15 or more beds, and (3) belonging to a hospital with more than 350 beds.…”

“…Although palliative care specialists stress the necessity of considerate care for the families of sedated patients, only one quantitative study has specifically addressed family distress [5]. That survey, using family-reported Likert-type scale, revealed that 78% of family members were satisfied with the treatment, but 25% expressed a high level of emotional distress.…”

Quality of life in palliative care

“…Treating the symptom is still required to achieve a benefit, but in a setting of "total care" with regard to the suffering of the patient-family unit the overall impact goes beyond this treatment alone [47,48]. The relationship between symptoms assessment and the evaluation of QOL in palliative care has some practical applications for clinical practice.…”