Cancer patients in terminal phase often feel self-perceived burden to their family and medical staff. The self-perceived burden should be alleviated, though needed care has not been fully investigated. This study aimed to investigate the self-perceived burden of terminal cancer patients and needed care. Semi-structured interviews were conducted for twenty-eight bereaved family members of cancer patients. The results revealed, 1) cancer patients' self-perceived burdens; including eight categories such as “It is distressful to have other people take care of my excretory needs”, 2) cancer patients' self-perceived behaviors to cope with their emotional burdens; including 11 categories such as “Telling the family to give higher priority to their work and plans”, 3) families' feelings and coping behaviors; including 15 categories such as “I thought of the patient's withholding of requests as a consideration for me“, and 4) care required for the patients' self-perceived burden; including nine categories such as “Speaking naturally instead of emphasizing something in particular”. The usefulness of care should be discussed.

The primary aim of this study was to describe how patient-held-records was used in the regional palliative care program (OPTIM-study). The number of patient-held-records disseminated was 1,131 per region per year. A total of 15% and 16% of 706 physicians and 2,236 nurses in the region reported that they used patient-held-records disseminated during the study periods, respectively. In-depth interview identified themes [difficulty in dissemination], potential benefits of patient-held-records ([improved sense-of-control of patients], [improved information sharing among health care professionals]), and barriers ([lack of patient-perceived benefits and patient burden], [necessity that all health care professionals involved should be aware the value of patient-held-records and understand how to use it]). Of 11 hospitals who introduced patient-held-records, only 2 hospitals continued to use it during 3-year study periods. In conclusion, region-wide dissemination of patient-held-records seems to be unfeasible in many regions in Japan.

It is important to collect patients' and their families' opinions to provide good palliative care. This study aims to analyze the contents of free description provided by the survey for cancer patients and bereaved families, which was performed before the intervention of The Outreach Palliative Care Trial of Integrated Regional Model (OPTIM) study. Requests for and good points of cancer treatment and palliative care were collected and classified. 1,493 advanced cancer patients and 1,658 bereaved families in four areas received the questionnaire, and 271 patients and 550 families filled in the free description. Cancer patients and bereaved families had demands for improved communication with medical staff, improved quality of pain relief, financial support of treatment, more educational activities on palliative care, and improved cooperation within and outside hospitals. Palliat Care Res 2011; 6(2): 237-245