Makiko Sanjo

Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis

ObjectivesWe investigated the barriers to referral to inpatient palliative care units (PCUs) through a qualitative study across various sources of information, including terminal cancer patients, their families, physicians, and nurses.Materials and methodsThere were 63 participants, including 13 advanced cancer patients, 10 family members, 20 physicians, and 20 nurses in palliative care and acute care cancer settings from five regional cancer institutes in Japan. Semi-structured interviews were conducted regarding barriers to referral to PCU, and data were analyzed by content analysis method.ResultsA total of 21 barriers were identified by content analysis. The leading barriers were (1) a negative image of PCUs by patients and families (n = 39), (2) delay of termination of anti-cancer treatment by physicians in the general wards (n = 24), (3) unwillingness to end anti-cancer treatment and denial of the fatal nature of the disease by patients and families (n = 22), (4) patient’s wish to receive care from familiar physicians and nurses (n = 20), and (5) insufficient knowledge of PCUs by medical staff in general wards (n = 17).ConclusionsTo correct these unfavorable images and misconceptions of PCUs, it is important to eliminate the negative image of PCUs from the general population, patients, families, and medical staffs. In addition, early introduction of palliative care options to patients and communication skills training regarding breaking bad news are relevant issues for a smooth transition from anti-cancer treatment to palliative care.

Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient

We examined factors associated with positive consequences for family members who served as caregivers of terminal cancer patients.

Reliability assessment and findings of a newly developed quality measurement instrument: quality indicators of end-of-life cancer care from medical chart review at a Japanese regional cancer center.

OBJECTIVES To assess the reliability of quality indicators of end-of-life cancer care (QI-EOL) and evaluate the quality of end-of-life cancer care in general wards by using QI-EOL. METHODS A retrospective chart review study was conducted on patients with cancer who died in general wards (n = 104) and the palliative care unit (PCU; n = 200) between September 2004 and February 2006 at a regional cancer center in Japan. Herein, we measured QI-EOL, which was developed to evaluate the quality of end-of-life cancer care based on medical charts. We preliminarily assessed the interrater reliability of QI-EOL and subsequently compared the percentages of QI-EOL documented between settings. RESULTS The reliability of QI-EOL was assured in 27 of 29 indicators (kappa > 0.40 or agreement > 90%). For the reliable indicators, we found wide variation in the percentages of QI-EOL documented, ranging from 0% to 98% in general wards. Thirteen of 27 indicators were significantly less documented in general wards than in PCU. Presence of delirium or agitation was less documented (15% in general wards, 55% in PCU, p < 0.001), although presence of pain (92%, 93%, p = 1.000) and dyspnea (78%, 78%, p = 1.000) were similarly documented. Observation and oral care (22%, 62%, p < 0.001) differed significantly. Patients (29%, 45%, p = 0.009) and familys (30%, 45%, p = 0.014) preferred place of care were infrequently documented. For psychosocial and spiritual concerns, no significant differences were found. CONCLUSION QI-EOL is generally a reliable quality measure instrument. We found the need for improvements of end-of-life cancer care in general wards using the QI-EOL.

Effects of Bereavement Life Review on Spiritual Well-Being and Depression

CONTEXT Some bereaved families experience low spiritual well-being, such as lack of meaning of life or purpose and psychological distress like severe depression. OBJECTIVES The primary aim of this study was to investigate the effects of the Bereavement Life Review on the spiritual well-being of bereaved family members. The secondary aim was to investigate the effects of this therapy on depression. METHODS Participants were 21 bereaved family members who lost loved ones in various palliative care units in Japan. They received the Bereavement Life Review, which consisted of two sessions for about 60 minutes each. In the first session, a bereaved family member reviewed memories with a clinical psychologist and answered some question. After the first session, the clinical psychologist made an album. In the second session, the family member and the clinical psychologist confirmed the accuracy of the contents of the album. The duration of the therapy was two weeks. The family member was assessed using the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) scale and the Beck Depression Inventory-II (BDI-II) pre- and postintervention. RESULTS FACIT-Sp scores increased from 19.9+/-5.8 to 22.8+/-5.1 (Z=-2.2, P=0.028 by Wilcoxon signed-rank test) and BDI scores decreased from 10.8+/-7.7 to 6.8+/-5.8 (Z=-3.0, P=0.003). CONCLUSIONS The Bereavement Life Review has the potential to improve spiritual well-being and decrease depression of bereaved family members. A further study with more participants is required to confirm the present findings.

Practices and evaluations of prognostic disclosure for Japanese cancer patients and their families from the family's point of view.

OBJECTIVE The primary end points of this analysis were to explore 1) the practices of prognostic disclosure for patients with cancer and their family members in Japan, 2) the person who decided on the degree of prognosis communication, and 3) family evaluations of the type of prognostic disclosure. METHOD Semistructured face-to-face interviews were conducted with 60 bereaved family members of patients with cancer who were admitted to palliative care units in Japan. RESULTS Twenty-five percent of patients and 75% of family members were informed of the predicted survival time of the patient. Thirty-eight percent of family members answered that they themselves decided on to what degree to communicate the prognosis to patients and 83% of them chose not to disclose to patients their prognosis or incurability. In the overall evaluation of prognosis communication, 30% of the participants said that they regretted or felt doubtful about the degree of prognostic disclosure to patients, whereas 37% said that they were satisfied with the degree of prognostic disclosure and 5% said that they had made a compromise. Both in the “prognostic disclosure” group and the “no disclosure” group, there were family members who said that they regretted or felt doubtful (27% and 31%, respectively) and family members who said that they were satisfied with the degree of disclosure (27% and 44%, respectively). SIGNIFICANCE OF RESULTS In conclusion, family members assume the predominant role as the decision-making source regarding prognosis disclosure to patients, and they often even prevent prognostic disclosure to patients. From the perspective of family members, any one type of disclosure is not necessarily the most acceptable choice. Future surveys should explore the reasons why family members agree or disagree with prognostic disclosures to patients and factors correlated with family evaluations.

What Bereavement Follow-Up Does Family Members Request in Japanese Palliative Care Units?: A Qualitative Study

Background: There is no standardized method by which bereavement care is offered by hospice/palliative care units (PCUs) in Japan. Aim: To evaluate bereavement services provided by hospice/PCUs and clarify demands for bereavement care. Design: Qualitative design based on semistructured interviews and content analysis. Setting/participants: Forty-four bereaved family members of patients with cancer who died in 9 PCUs in 4 regions. Results: Memorial services were positively evaluated for the following variables: reunion and interaction with staff; the service’s relaxed atmosphere; staff attentiveness; suitable location; suitable timing; program content; and interaction with other bereaved families. Memorial cards were positively evaluated regarding the level of concern shown by the staff and the personalized card. Respondents indicated their desire for a care system, a bereaved family care program, and information services.

Are Bereaved Family Members Satisfied With Information Provision About Palliative Care Units in Japan

This study clarified the evaluation of the information about palliative care units (PCUs) from the oncologists by the bereaved family members of Japanese patients with cancer at the time of their first referral. A multicenter questionnaire survey examining the amount, timing, and adequacy of information received about PCUs was conducted. Half of the respondents (N = 465, mean age = 60 years) were spouses. Findings showed that 55% of the respondents thought the amount of information was inadequate and 33% thought the timing of the information about PCU from the oncologist was inadequate. Greater perceived inadequacy of the amount of information was significantly associated with (1) obtaining information from other patients and/or family member who had no experience with PCUs and (2) not acquiring information about the availability of medical staff and medical treatments at PCUs. Greater perceived inadequacy of the timing of the information was significantly associated with acts by the oncologist and/or nurses, such as providing insufficient information or saying there is nothing more that can be done any longer; however, this was not significantly associated with the actual timing of the oncologists’ information. Medical staff should understand what information families desire and provide enough detail for patients to imagine accurately what time spent in a PCU would be like. Moreover, practitioners should strive to improve methods of communication and engagement after the information provision, rather than prioritizing the timing of the information.

A pilot study of adaptation of the transtheoretical model to narratives of bereaved family members in the bereavement life review.

This study aimed to examine the possibility of adaptation of the transtheoretical model (TTM) to narratives from the Bereavement Life Review. Narratives from 19 bereaved family members were recorded, transcribed into sentences, and allocated into stages based on the TTM criteria. Those who lived in fantasy were allocated to the precontemplation stage and who recognized the patients death but could not adjust to the death were allocated to the contemplation stage. Those who understood the need for changes and had new plans were allocated to the preparation stage, and those who were coping were allocated to the action stage, and those who had confidence to remember the loved one who died were allocated to the maintenance stage. These results provide deeper understanding of a bereaved family member and suggest that a different intervention method may be useful in each stage.