Kei Hirai

Evaluation of End-of-Life Cancer Care From the Perspective of Bereaved Family Members: The Japanese Experience

Surveying bereaved family members could enhance the quality of end-of-life cancer care in inpatient palliative care units (PCUs). We systematically reviewed nationwide postbereavement studies of PCUs in Japan and attempts to develop measures for evaluating end-of-life care from the perspective of bereaved family members. The Care Evaluation Scale (CES) for evaluating the structures and processes of care, and the Good Death Inventory (GDI) for evaluating the outcomes of care were considered suitable methods. We applied a shortened version of the CES to three nationwide surveys from 2002 to 2007. We developed the CES as an instrument to measure the structures and processes of care and the GDI as an outcomes measure for end-of-life cancer care from the perspective of bereaved family members. We conducted three nationwide surveys in 1997, 2001, and 2007 (n = 850, 853, and 5,301, respectively). Although six of the 10 areas of the CES showed significant improvements between the two time points investigated, we identified considerable potential for further progress. Feedback from surveys of bereaved family members might help to improve the quality of end-of-life cancer care in inpatient PCUs. However, the effectiveness of feedback procedures remains to be confirmed. Furthermore, there is a need to extend the ongoing evaluation process to home care hospices and general hospitals, including cancer centers, identify the limitations of end-of-life care in all settings, and develop strategies to overcome them.

Effects of a programme of interventions on regional comprehensive palliative care for patients with cancer: a mixed-methods study

BACKGROUND Improvement of palliative care is an important public health issue, but knowledge about how to deliver palliative care throughout a region remains inadequate. We used surveys and in-depth interviews to assess changes in the quality of palliative care after regional interventions and to gain insights for improvement of palliative care at a regional level. METHODS In this mixed-methods study, a comprehensive programme of interventions for regional palliative care for patients with cancer was implemented from April 1, 2008, to March 31, 2011 in Tsuruoka, Kashiwa, Hamamatsu, and Nagasaki in Japan. Interventions included education, specialist support, and networking. We surveyed patients, bereaved family members, physicians, and nurses before and after the interventions were introduced. We also did qualitative interviews with health-care professionals after the interventions were introduced. Primary endpoints were numbers of home deaths, coverage of specialist services, and patient-reported and family-reported qualities of care. This trial is registered with UMIN Clinical Trial Registry, Japan (UMIN000001274). FINDINGS 859 patients, 1110 bereaved family members, 911 physicians, and 2378 nurses provided analysable preintervention surveys; 857 patients, 1137 bereaved family members, 706 physicians, and 2236 nurses provided analysable postintervention surveys. Proportions of home deaths increased significantly, from 348 of 5147 (6.76%) before the intervention programme to 581 of 5546 (10.48%) after the intervention programme (p<0.0001). Furthermore, 194 of 221 (87.78%) family members of patients who died at home answered that these patients had wanted to die at home. The ratio of patients who received palliative care services to all patients who died of cancer increased significantly (from 0.31 to 0.50; p<0.0001). The patient-reported (effect size 0.14; adjusted p=0.0027) and family-reported (0.23; p<0.0001) qualities of care were significantly better after interventions than before interventions. Physician-reported and nurse-reported difficulties decreased significantly after the introduction of the interventions. Qualitative interviews showed improved communication and cooperation between health-care professionals because of greater opportunities for interactions at various levels. INTERPRETATION A regional programme of interventions could improve the quality of palliative care. Improvement of communication between health-care professionals is key to improvement of services. FUNDING Third Term Comprehensive Control Research for Cancer Health and Labor Sciences Research Grants of the Ministry of Health, Labour and Welfare of Japan.

Why are bereaved family members dissatisfied with specialised inpatient palliative care service? A nationwide qualitative study:

Background: In order to improve the quality of palliative care, we can learn from bereaved families who were dissatisfied with the care they received. The primary aim of this study was to explore why bereaved families were dissatisfied with specialized inpatient palliative care. Methods: This qualitative study formed part of a nationwide questionnaire survey administered to 1225 bereaved family members of cancer patients who died in certified palliative care units in Japan. The participants were 22 consecutive family members who reported a greater need for improvement in care. Data were analysed by the content analysis. Results: The reasons that the bereaved families listed are classified into 27 categories and seven themes: (1) lack of perceived support for maintaining hope; (2) lack of perceived respect of individuality, especially in attitudes toward death; (3) perceived poor quality of care, especially psychological care, not being treated with dignity and inadequate explanation from physicians; (4) inadequate staffing and equipment, especially physician availability; (5) unavailability of timely administration; (6) lack of accurate information about palliative care units; and (7) family’s practical and economic burden. Conclusions: This study identified the multiple sources of dissatisfaction with specialized inpatient palliative care for bereaved families. These findings could be useful in developing a more desirable system of specialised inpatient palliative care.

Care for Imminently Dying Cancer Patients: Family Members' Experiences and Recommendations

PURPOSE The aim of this study was to clarify the level of emotional distress experienced by bereaved family members and the perceived necessity for improvement in the care for imminently dying patients and to explore possible causes of distress and alleviating measures. METHODS A cross-sectional nationwide survey was performed in 2007 of bereaved families of cancer patients at 95 palliative care units across Japan. Results Questionnaires were sent to 670 families, and 76% responded. Families reported their experiences as very distressing in 45% of cases. Regarding care, 1.2% of respondents believed that a lot of improvement was needed, compared with 58% who believed no improvement was needed. Determinants of high-level distress were a younger patient age, being a spouse, and overhearing conversations between the medical staff outside the room at the time of the patients death; those reporting high-level necessity of improvement were less likely to have encountered attempts to ensure the patients comfort, received less family coaching on how to care for the patient, and felt that insufficient time was allowed for the family to grieve after the patients death. CONCLUSION A considerable number of families experienced severe emotional distress when their family member died. Thus, we propose that a desirable care concept for imminently dying cancer patients should include relief of patient suffering, family advisement on how to care for the patient, allowance of enough time for the family to grieve, and ensuring that family members cannot overhear medical staff conversations at the time of the patients death.

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.

Spiritual care of cancer patients by integrated medicine in urban green space: a pilot study.

BACKGROUND Psycho-oncological care, including spiritual care, is essential for cancer patients. Integrated medicine, a therapy combining modern western medicine with various kinds of complementary and alternative medicine, can be appropriate for the spiritual care of cancer because of the multidimensional characteristics of the spirituality. In particular, therapies that enable patients to establish a deeper contact with nature, inspire feelings of life and growth of plants, and involve meditation may be useful for spiritual care as well as related aspects such as emotion. The purpose of the present study was to examine the effect of spiritual care of cancer patients by integrated medicine in a green environment. METHODS The present study involved 22 cancer patients. Integrated medicine consisted of forest therapy, horticultural therapy, yoga meditation, and support group therapy, and sessions were conducted once a week for 12 weeks. The spirituality (the Functional Assessment of Chronic Illness Therapy-Spiritual well-being), quality of life (Short Form-36 Health Survey Questionnaire), fatigue (Cancer Fatigue Scale), psychological state (Profile of Mood States, short form, and State-Trait Anxiety Inventory) and natural killer cell activity were assessed before and after intervention. RESULTS In Functional Assessment of Chronic Illness Therapy-Spiritual well-being, there were significant differences in functional well-being and spiritual well-being pre- and postintervention. This program improved quality of life and reduced cancer-associated fatigue. Furthermore, some aspects of psychological state were improved and natural killer cell activity was increased. CONCLUSIONS It is indicated that integrated medicine performed in a green environment is potentially useful for the emotional and spiritual well-being of cancer patients.

Discrimination between worry and anxiety among cancer patients: development of a Brief Cancer-Related Worry Inventory.

Objectives: A psychometric scale for assessing cancer‐related worry among cancer patients, called the Brief Cancer‐Related Worry Inventory (BCWI), was developed.

Professionally perceived effectiveness of psychosocial interventions for existential suffering of terminally ill cancer patients

Background: Although integrated care for existential suffering is an essential part of palliative care, little is known about its concept and efficacy as perceived by professionals. A questionnaire survey was carried out to 1) explore the underlying structure of psychosocial interventions recommended by specialists, 2) identify the professionally perceived effectiveness of each intervention for specific existential distress, and 3) examine the effects of specialty on their recommendations. Methods: A questionnaire with three scenarios representing terminally ill cancer patients with uncertainty-related anxiety, guilt feelings, and dependency-related meaninglessness was mailed to 701 Japanese psychiatrists, 118 psychologists, and 372 palliative care nurses. Results: A total of 456 responses were obtained (response rate = 38%). Recommended psychosocial interventions were classified into six subcategories: ’a supportive-expressive approach,fl’providing comfortable environments,fl’meaning-centered approach,fl’being,fl’education and coping skills training,fland ’a religious approach.flA ’supportive-expressive approachflwas consistently recommended in all vignettes. On the other hand, ’providing comfortable environmentsflwas most recommended for patients with uncertainty-related anxiety, and a ’meaning-centered approachfland ’beingflwere most recommended for patients feeling dependency-related meaninglessness. Psychiatrists estimated the effectiveness of psychopharmacological treatment significantly higher than psychologists and nurses, while nurses evaluated efficacy of all other interventions significantly higher than psychiatrists and psychologists. Conclusions: Experts evaluated a variety of clinical interventions as effective in palliating existential suffering, although the perceived levels of efficacy of each intervention differed according to the nature of suffering and their specialties. To effectively alleviate existential suffering in terminally ill cancer patients, an integrated care by an interdisciplinary team is necessary.

Effects of a modified group intervention with early-stage breast cancer patients

The aim of this study was to investigate the clinical effectiveness of a psychiatric intervention program consisting of 5 weekly structured interventions and 3 additional group meetings every two months. Previous studies revealed that a 5 weekly structured intervention program was effective for alleviating psychological discomforts in Japanese breast cancer patients, and that the effectiveness persisted for 6 months for patients without lymph node metastasis or adjustment disorders. Since this 5-session intervention did not have persistent effects in patients with lymph node metastasis and/or adjustment disorders, 3 additional group meetings every two months were added after completion of the 5 weekly structured interventions. A total of 43 breast cancer patients completed the full program. The Profile of Mood States (POMS) scores were compared before, immediately after 5 sessions, immediately after the 3 additional interventions, and 6 months after all programs. As analyzed by POMS scores, the clinical effectiveness of a structured group intervention program persisted for 6 months for patients even with nodal metastases and/or adjustment disorders. These findings of the present study suggested that the 5 weekly intervention program was sufficient for patients without lymph node metastasis or adjustment disorders. In contrast, this intervention program alone was insufficient for patients with nodal metastases and/or adjustment disorders. For them, a new psychiatric intervention program consisting of 5 weekly structured interventions and 3 additional group meetings every two months were effective and sufficient.

Public Awareness, Knowledge of Availability, and Readiness for Cancer Palliative Care Services: A Population-Based Survey across Four Regions in Japan

BACKGROUND This study explores the distribution of public awareness, knowledge of availability, and readiness for palliative care services, and the perceived reliability of information resources as part of a nationwide palliative care implementation intervention in Japan (Outreach Palliative Care Trial of Integrated Regional Model [OPTIM]). METHODS A cross-sectional anonymous questionnaire survey was conducted, and 3984 responses were used in the final analysis. RESULTS A total of 63.1% of respondents admitted having no knowledge about palliative care, while 0.5% of respondents were using palliative care services. Respondents who knew about palliative care services, yet did not know about their availability were 18.6% of all respondents. Respondents who had cancer-related experiences were more likely to be aware of palliative care compared to the general population and availability of palliative care services. Only awareness of palliative care was significantly associated with two typical images, while cancer-related experiences were not. CONCLUSION Findings show that the public awareness of palliative care services and their availability is insufficient, and cancer-related experiences affect awareness of cancer palliative care but not directly related to typical images for palliative care such as care for patients close to death.