ABSTRACT
Purpose: The aim of this study was to characterize the process of adaptation experienced by the spouses of allotransplanted male patients following discharge. Methods: We conducted semi-structured interviews with six spouses and questioned them about the difficulties experienced in daily life following the discharge of their husband, and their coping strategies. We descriptively analyzed the interview data using the modified grounded theory approach. Results: We extracted ‘habituation of combating communicable diseases' from “responsibility for making effort,” “management of everyday life, ”confidence derived from experience “ and “habituation in the family.” We also extracted ‘change in anxiety and concern' from “perception of differences in attitude in daily life between husband and wife,” “change in the sense of values,” “finding a point of compromise in each family,” “benefit from allotransplant,” and “persistent anxiety.” Conclusion: The females habituated themselves to combating communicable diseases by gaining self-efficacy so that they reconciled a new, fixed lifestyle with their husbands following allotransplantation. Although their anxiety and concerns changed over time, they had persistent anxiety about both their husbands' health, including the risk of relapse or graft-versus-host disease, and financial hardships.
ABSTRACT
<b>Purpose:</b> We evaluated decision-making regarding their end-of-life (EOL) care planning near death of cancer patients. <b>Methods:</b> We characterized EOL decision-making using the medical records of 52 patients of death from cancer, and preference of physicians or surgeons based on semi-structured interviews. <b>Results:</b> For 49 (94%) out of 52 patients, physicians discussed EOL care planning near death with family, whereas family made decision regarding EOL care planning near death in 48 (92%) of patients in the last hours or days of life. Four patients (8%) made their own decisions regarding EOL care planning near death. The median number of days between discussion regarding EOL care planning near death and actual patient death was 4 days. The most common reason for the inability of the patients to make the decision themselves was because their condition had deteriorated. With regard to EOL care policy, all 52 patients requested that resuscitation not be attempted, this was the same for patients who made EOL-decision themselves and those who did not. Eight out of 15 physicians (53%) answered that they discussed EOL care planning near death with family, whereas any physician did not answered that they discuss EOL care planning near death with patients. <b>Conclusion:</b> For the vast majority of patients, their family made decisions regarding EOL care planning near death because physicians preferred to discuss this planning with them instead of with the patients. Such discussions generally occurred when the patient’s death was imminent. All patients and their family preferred that resuscitation not be attempted.
ABSTRACT
<b>Purpose and Methods</b>: Based on the medical records of 56 cases of death from hematologic malignancy, we investigated who decided end-of-life care in the terminal phase and at the end of life, what factor discourages patients from making self-decisions and whether an advance directive about end-of-life care is present. We then extracted the story of the family in decision-making for end-of-life care. <b>Results</b>: In 45 cases, the patient decided end-of-life care at the terminal phase. In 11 cases, the family made the decision on behalf of the patient. In the terminal phase, the factor that most discouraged patients from making a self-decision was dementia, but at the end of life the factor was symptomatic worsening in all cases. In 49 cases, the family decided end-of-life care at the end of life on behalf of the patient. Regarding end-of-life care policy, 49 cases hoped for "do not attempt resuscitation (DNAR)" and 7 cases hoped for life-support treatment. Advance directives were confirmed in 7 cases. Mental conflict about end-of-life care policy was perceived from the family's story. Despite small number of cases, it was suggested that an advance directive reduced psychological burden on the family. <b>Conclusion</b>: It is difficult for the patient to make self-decisions about end-of-care life at the end of life as compared to end-of-care life in the terminal phase. Further studies are required to assess the efficacy of an advance directive.
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<b>Purpose</b>: The effectiveness of continuous intravenous infusion of fentanyl for pain due to stomatitis, pharyngitis, and esophagitis after hematopoietic stem cell transplantation (HSCT) was investigated. <b>Methods</b>: Subjects included 15 HSCT patients with pain due to mucosal damage. Continuous intravenous infusion of fentanyl was commenced at a dose of 12.5 μg/hour. Pain was controlled through an increase or decrease in volume as needed. Grade of oral mucosal damage, pain scale, and QOL index such as the number of tooth brushing or gargles were measured at the start of administration of fentanyl and at the time of maximum dosage. <b>Results</b>: The median time to start of fentanyl administration was day 7 after transplantation. The median duration of administration was 12 days. The median maximum dosage of fentanyl was 980 (range, 243.8∼3,010) μg/day, and it was reached at a median of day 5 after administration of fentanyl was started. Compared to that observed at the start of fentanyl administration, the grade of oral mucosal damage was significantly increased at the time of maximum administration. However, pain scale was significantly decreased and QOL index was maintained. <b>Conclusion</b>: Continuous intravenous infusion of fentanyl suppressed the increase of pain when mucosal damage increased, maintained QOL, and possibly contributed to selfcare. Palliat Care Res 2011; 6(2):246-252
ABSTRACT
<b>Purpose</b>: The aim of this qualitative research was to identify the components of the changes in perception experienced by the physicians and nurses concerning the medical care they provide for Hematology Ward patients in the terminal phase. <b>Methods</b>: We performed semi-structured interviews with three physicians and five nurses concerning case conferences about patients in the terminal phase and both qualitatively and descriptively analyzed the data from those interviews. <b>Results</b>: We extracted the category of ‘consciousness of terminal phase’ from subcategories “consciousness about the period of terminal phase” and “change in care where patients’ remaining time is considered.” We also extracted the category ‘team approach’ from subcategories “know the importance of information sharing within the medical care team,” “nurses can play a coordinating role” and “opportunity to know the will of patientsand families.” <b>Conclusion</b>: The study showed that the case conferences made physicians and nurses conscious of the terminal phase on the medical ward where patients with various symptoms are mixed. We found that case conferences provided an opportunity for physicians and nurses to become conscious of the needs of the terminally ill, become aware of the importance of information sharing, and perceive the importance of the team approach. Furthermore the case conferences caused the nurses to become more aware of their role in the care of patients in the terminal phase. Palliat Care Res 2011; 6(2): 227-232