Concerns of family members of patients receiving palliative sedation therapy.

PURPOSE: Symptomatic sedation is often required in terminally ill cancer patients and could cause significant distress to their families. The aim of this study was to gather vivid family descriptions about their experiences in palliative sedation therapy. METHODS: This report is an additional analysis of a multicenter questionnaire survey. We performed content analysis on 48 statements described by 185 bereaved family members of patients who received palliative sedation therapy. RESULTS: Family members reported guilt, helplessness, and physical and emotional exhaustion when patients received palliative sedation therapy. They were concerned about whether sedated patients experienced distress, wished to know that the maximum efforts had been made, wished to prepare for patient death, wished to tell important things to patients before sedation, wished to understand patients' suffering, and wanted medical professionals to treat patients with dignity. CONCLUSIONS: To alleviate family distress, clinicians should understand families' emotional distress, ensure that unconscious patients feel no distress, reassure family members that the symptoms are truly refractory despite maximum efforts for symptom relief, give information and coordinate the situation to enable families to prepare for patient death and to tell important things to patients before sedation, help families to share patients' suffering, and treat patients the same as when they remained conscious.

[A clinical study using octreotide in relieving gastrointestinal symptoms due to bowel obstruction in a terminally ill cancer patient].

Terminally ill cancer patients with complicated bowel obstructions often have poor quality of life (QOL) due to gastrointestinal symptoms such as nausea and vomiting. Many of these patients are inoperable because of poor general conditions, and half of these patients can't be managed by conventional antiemetics. There are many reports indicating octreotide is effective for these patients. In the present study, 13 patients (5 patients without a nasogastric tube and 8 patients with) were administered octreotide at 300 microg/day by 24 hours continuous subcutaneous infusion. Among the effectively evaluable 10 cases, 6 cases (60.0%) were assessed as effective according to the efficacy criteria based on the JCOG toxicity scale. In the 6 cases who had nasogastric tubes, the nasogastric aspirates decreased from 890 ml (550-1,950) to 480 ml (180-1,790). Vomiting was successfully controlled after the removals of nasogastric tubes in 4 out of 6 cases (66.7%), regarding safety, 2 out of 13 cases (15.4%) showed an excess of liver enzymes but no clinically suspected adverse effect was observed. Octreotide is effective and well tolerated in terminally ill cancer patients with malignant bowel obstruction.

Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan.

BACKGROUND: Although alleviation of existential distress is important for terminally ill cancer patients, the concept of existential distress has not been fully understood. The aim of this study was to categorize existential concerns of Japanese terminally ill cancer patients and explore care strategies based on the categorizations. METHODS: A multicenter cross-sectional study in 88 terminally ill cancer patients receiving specialized inpatient palliative care was performed. The nurses explored patient existential concerns by asking several key questions, and recorded the answers that they considered typically described the patients' concerns. All statements recorded by the nurses were analyzed using content analysis methods. RESULTS: A total of 89 statements were subjected to analysis. The categories and their prevalence were: relationship-related concerns (22%; isolation, concerns about family preparation, conflicts in relationship), loss of control (16%; physical control, cognitive control, control over future), burden on others (4.5%), loss of continuity (10%; loss of role, loss of enjoyable activity, loss of being oneself), uncompleted life task (6.8%), hope/hopelessness (17%), and acceptance/preparation (25%). CONCLUSIONS: Existential concerns of Japanese terminally ill cancer patients were categorized as relationship-related concerns, loss of control, burden on others, loss of continuity, uncompleted life task, hope/hopelessness, and acceptance/preparation. These themes seemed to encompass universal human suffering beyond cultural differences, and this conceptualization may contribute to the development of effective therapeutic interventions to alleviate existential distress.

Family experience with palliative sedation therapy for terminally ill cancer patients.

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.

Patterns of Care Study quantitative evaluation of the quality of radiotherapy in Japan.

BACKGROUND: Quality assurance (QA) of clinical practice is important for any medical specialty. Programs based on the Patterns of Care Study (PCS) have been developed to compare the quality of radiotherapeutic care at individual institutions, with the national average representing the process and outcome of radiotherapy. The feasibility of these programs was analyzed. METHODS: Calculation programs for the national average and standard score were developed to evaluate quantitatively the process and outcome of radiotherapy at individual institutions as well as at the national level. The programs were used to evaluate the quality of radiotherapy for 561 esophageal carcinoma patients surveyed in the Japanese PCS. RESULTS: As a representative example of QA measurement, the national average for the 5-year survival rate for these patients in the nonsurgery group was 5%. The regional averages for those in academic and nonacademic institutions were 9% and 1%, respectively (P = 0.0142), showing a significant difference between these two institutional strata. The standard score compared with the national average for institution No.105, for example, was 16.3 (P < 0.0001), with the positive value indicating that the outcome at this institution was significantly higher than the national average. The corresponding figure compared with the regional average was -0.3 (P = 0.7391), with the negative value indicating the outcome is not superior to the regional average of academic institutions. CONCLUSIONS: These programs make it possible to compare quantitatively the quality of radiation therapy at individual institutions with the national and regional averages. They should also be useful for nationwide QA projects in radiation oncology as well as in other medical specialities.