1.How Should ICDs Be Stopped in the Terminal Phase of Cancer?: Five Cases of Patients in a Palliative Care Unit
Miho Shimokawa ; Takayuki Hisanaga ; Ritsuko Yabuki ; Shingo Hagiwara ; Yasuo Shima
Palliative Care Research 2017;12(3):553-557
From January 2015 to January 2017, we encountered five terminal cancer patients with implantable cardioverter defibrillators (ICDs) in the palliative care unit of our hospital. Due to delirium or dementia, four of these five patients did not have the decision-making capacity to stop their ICD. Although one patient was capable of making his own decisions, his family did not agree with the medical professional considering the patient’s decision. The families of all five patients made decisions on behalf of the patients. The procedure for stopping the ICD was first discussed with the families at 2–21 days prior to the patients’ deaths. The ICDs were stopped between 3 h and 11 days prior to the patients’ deaths, following the consent of the families, which was obtained after 1–5 consultations. Through these experiences, we became aware of the following problems with regard to stopping ICDs: (1) the lack of experience of medical professionals in decision-making, (2) the lack of recognition of medical professionals to the distress caused to patients by ICDs, (3) the psychological burden and time constraint of discussions, and (4) the lack of knowledge of ICDs among patients and their families. These problems need to be addresses as part of advance care planning for cancer patients.
2.Complicated grief, depressive symptoms, and suicidial ideation among the bereaved whose family member died at palliative care units
Yukihiro Sakaguchi ; Mitsunori Miyashita ; Tatsuya Morita ; Satoru Tsuneto ; Yasuo Shima
Palliative Care Research 2013;8(2):203-210
Objectives: The aim of this study is to explore prevalence and determinants of complicated grief, depressive symptoms, and suicide ideation among the relatives whose family members died in palliative care units. Methods: A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who were admitted to palliative care units in Japan. Participants completed self-report questionnaire including the Center for Epidemiologic Study Depression Scale (CES-D), Inventory of Traumatic Grief (ITG), the item concerning suicide ideation, Care Evaluation Scale (CES), and Good Death Inventory (GDI). Results: Of the 653 questionnaires sent to bereaved family members, 451 responses were analyzed (response rate: 67%). The results showed 10 (2.3%) respondents with complicated grief and 153 (43.8%) with depressive symptoms. Suicide ideation was appeared among 52 (11.9%) respondents. Multiple regression analysis revealed that ITG was signicicantly associated with both CES and GDI. Patiens' age at death and pre-bereavement health contributed to the suicide ideation of the bereaved family members. Conclusion: The prevalence of complicated grief and depressive symptoms among the relatives whose family members died in palliative care units were 2.3% and 43.8%, respectively. The rates of suicide ideation was 11.9% of respondents. The results suggested that the evaluations about structure and process of palliative care, and quality of death contribute to better adjustment of the bereaved.
3.Evaluations and needs of bereavement services among the bereaved whose family member died at palliative care units
Yukihiro Sakaguchi ; Mitsunori Miyashita ; Tatsuya Morita ; Satoru Tsuneto ; Yasuo Shima
Palliative Care Research 2013;8(2):217-222
Objectives: The purpose of this study is to clarify evaluations and needs of bereavement services among the bereaved whose family member died at palliative care units. Methods: A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who were admitted to palliative care units in Japan. Participants completed self-report questionnaire including the items concerning bereavement services provided by palliative care units and other resources, and the Center for Epidemiologic Study Depression Scale (CES-D). Results: Of the 661 questionnaires sent to bereaved family members, 451 responses were analyzed (response rate: 68%). The results revealed that 49% of respondents received "memorial cards". Bereavement services were evaluated positively by 88-94% of respondents. The bereaved relatives with higher level of depressive symptoms signicicantly asked for bereavement services. Conclusion: These findings did not suggest the efficacies of some beravement services provided by a specified unit, but that of each service itself at palliative care units. And this result supported the notion that all the bereaved did not equally want any beravement services.
4.Family evaluation about caring the body of deceased patient by nurses in Japanese inpatient hospices
Michiharu Yamawaki ; Tatsuya Morita ; Emi Kiyohara ; Megumi Shimizu ; Satoru Tsuneto ; Yasuo Shima ; Mitsunori Miyashita
Palliative Care Research 2015;10(2):101-107
Objectives: Primary aim of this study was to clarify the family evaluation about caring the body of the deceased patient by nurses at Japanese inpatient hospices and palliative care unit. Method: A mail survey was performed on 958 bereaved family members of 103 palliative care units in July, 2010. Result: A total of 597 family members replied(62%). As a whole, 441(74%)families reported that they were satisfied with the way caring the body of the deceased patient by nurses. A multivariate analysis revealed three factors were significantly associated with the levels of satisfaction:the patient face became peaceful and calm, and nurses treated the patient in the same way before died, and patient age was over 70 years old. Conclusion: Making patient face peaceful and calm, and treating the patient in the same way before died is important in caring the body of the deceased.
5.Family experience and evaluation about caring the body of deceased patient in Japanese inpatient hospices: a content analysis of free comments in questionnaire survey
Michiharu Yamawaki ; Tatsuya Morita ; Emi Kiyohara ; Megumi Shimizu ; Satoru Tsunetou ; Yasuo Shima ; Mitsunori Miyashita
Palliative Care Research 2015;10(3):209-216
Objectives: Primary aim of this study was to clarify the experience and evaluation of families who about caring the body of the deceased patient by nurses at Japanese inpatient hospices and palliative care unit. Method: A mail survey was performed on 958 bereaved family members of 103 palliative care units. A total of 598 family members replied. This study was content analysis about free comments in the questionnaire. Result: A total of 301 comments from 162 questionnaires were identified as the subjects for content analysis. The family was experience satisfaction or dissatisfaction about the way caring the body of the deceased patient. The family felt hesitation and worries about caring the body of deceased patient. A content analysis revealed 3 underlying themes: the family evaluate as a good experience, the family evaluate as an unpleasant experience, the family evaluate as an experience of hesitation and worries. Conclusion: The family was satisfied about treating the patient in the same way before died, making patient face beautiful and calm, facilitates family’s preparation. When nurses recommend families to care the body of deceased patient, which become memorably experience, and they come to be get over sorrow after the bereavement. But they need to confirm the family’s preparation and choose what they can do.
6.A case report of intractable nausea due to zoledronic acid-refractory hypercalcemia treated with denosumab
Shingo Hagiwara ; Takayuki Hisanaga ; Takahiro Higashibata ; Ritsuko Yabuki ; Miho Shimokawa ; Yasuo Shima
Palliative Care Research 2015;10(4):552-556
Introduction: We report a case of intractable nausea due to zoledronic acid-refractory hypercalcemia for which the nausea was alleviated with denosumab, thereby improving quality of life. Case: A 54-year-old woman presented with metastatic renal pelvis cancer. Elevation of serum calcium level and nausea were noted. After multiple antiemetics were administered with no appreciable symptomatic improvement, treatment with zoledronic acid resulted in a decrease in the calcium level and an improvement of nausea from Japanese version Support Team Assessment Schedule (STAS-J) 3 to 1. After the third dose of zoledronic acid, the corrected calcium level was 11.8 mg/dl, indicating refractory. Because no improvement in nausea was noted, treatment with denosumab was initiated. After the treatment, the calcium level decreased to 9.4 mg/dl, and nausea improved from STAS-J 4 to 0. The patient could spend good time with her family, albeit for a short time, and no progression of the symptoms or adverse events due to denosumab occurred until her death. Discussion: Denosumab appears to be useful for improvement of intractable nausea in zoledronic acid-refractory hypercalcemia.
7.A Second Time Nationwide Survey of Quality of End-of-Life Cancer Care in General Hospitals, Inpatient Palliative Care Units, and Clinics in Japan: The J-HOPE 2 Study
Megumi Shimizu ; Maho Aoyama ; Tatsuya Morita ; Satoru Tsuneto ; Yasuo Shima ; Mitsunori Miyashita
Palliative Care Research 2016;11(4):254-264
Periodic evaluation of end-of- life (EOL) palliative care is important to maintain and improve quality of EOL palliative care. We conducted a cross-sectional, anonymous, self-report questionnaire survey for bereaved family members of cancer patients in 2010. This was the second time nationwide survey. This study aimed to evaluate EOL cancer care from the perspective of bereaved family members in nationwide general hospitals, inpatient palliative care units (PCUs), and home hospices in Japan and to explore whether there is any change of quality of palliative care over the last nationwide survey conducted in 2007. Among member facilities of Hospice Palliative Care Japan, 25 general hospitals, 103 PCUs, 14 clinics participated in this study and 7797 bereaved family members answered the questionnaire. Overall, bereaved family members were satisfied with EOL care in all places of death, as in the last survey. Although results indicated that coordination of care and physical care of nurse were warranted to improve in general hospitals, drawback of PCUs were availability and the potential deficits of clinics were the environment. Through the years, there is no clinically significant change from the last survey. We should continue to make efforts to evaluate and monitor palliative care in Japan for quality control.
8.Practical Use of Feedback Report of Nationwide Bereavement Survey in Participated Institutions
Naoko Igarashi ; Maho Aoyama ; Kazuki Sato ; Tatsuya Morita ; Yoshiyuki Kizawa ; Satoru Tsuneto ; Yasuo Shima ; Mitsunori Miyashita
Palliative Care Research 2017;12(1):131-139
Aims: The aim of this study was to clarify practical use of feedback report in each institution participated the nationwide bereavement survey (J-HOPE3). Methods: After a nationwide bereavement survey (J-HOPE3) conducted in 2014, we sent a feedback report to each participated institution (20 general wards, 133 inpatient palliative care units, and 22 home hospice services). The feedback report included the results from quality of care, bereaved family’s mental status, and free comments from the participant of their own institution. We sent a questionnaire 4 month following to the feedback report for all institutions regarding the practical use of results from the feedback report. Results: The analysis included 129 (response rate 74%) returned questionnaires. The institutions that they passed around the report was 90%, discussed about their results at a staff meeting was 54%, and reported the results to manager/chief of the institution was 65%. Around 80% of the institutions responded positively to receive the feedback report of their own institution such as “It was good that they could understand the strengths and weakness of their own institutions” which reported that they worked on to improve care were 48%. Conclusions: Current study had shown data about practical use of the feedback report of bereavement study. It is important to feedback the results and encourage the institution to make use of the results in their daily practice, especially to discuss the results in staff meetings.
9.Why Patients in Institutions with Religious Background Achieve ‘Good Death’ ? : Findings from National Bereavement Survey of 127 Hospice and Palliative Care Units
Maho Aoyama ; Ai Saito ; Mari Sugai ; Tatsuya Morita ; Yoshiyuki Kizawa ; Satoru Tsuneto ; Yasuo Shima ; Mitsunori Miyashita
Palliative Care Research 2017;12(2):211-220
Previous study reported that patients of institutions with religious background are more likely to achieve ‘good death’ than patients in non-religious institutions, although the reasons are unclear. This study aims to examine the reasons for this difference using a national survey of religious and non-religious institutions. We sent a self-administered questionnaire to 10,715 bereaved family caregiver and 133 hospice and palliative care units which cared for their family members prior to death. The questionnaire for bereaved families included the Good Death Inventory (GDI). The questionnaire for institutions included their religious affiliation and their subjective and objective provided care. In total, 7,286 bereaved families (68%) and 127 (95%) institutions including 23 religious end-of-life care institutions responded. We performed t-test and χ-square test to compare the GDI scores and provided care for religious and non-religious end-of-life care institutions. The GDI total score was significantly higher (p=0.01) in religious institutions compared to non-religious institutions. Items such as “providing many activities for seasonal events to the patients”, “providing more bereavement care”, “having facilities to practice their religion”, and “having regular visits from religious leaders”, were all reported more frequently in the religious institutions, and significantly associated with achievement of ‘good death’ (p<0.05 for all items). This study suggests that factors for achieving ‘good death’ are not only limited to providing religious care but also providing other forms of care, services, and activities that can enhance the patients’ ‘good death’.
10.Nationwide Survey on Complementary and Alternative Medicine (CAM) in Cancer Patients Who Died at Palliative Care Units in Japan: Prevalence of CAM and Family Experience
Kozue Suzuki ; Tatsuya Morita ; Keiko Tanaka ; Yo Tei ; Yukari Azuma ; Naoko Igarashi ; Yasuo Shima ; Mitsunori Miyashita
Palliative Care Research 2017;12(4):731-737
The aim of this study was to understand the use of complementary and alternative medicine (CAM) in cancer patients in Japan. This study was part of the Japan Hospice and Palliative care Evaluation 2016 (J-HOPE2016) Study. A multicenter questionnaire survey was conducted on a sample of bereaved family members of cancer patients who died at palliative care units. Data suggest that 54% of cancer patients use CAM. In comparison with a previous study in 2005 in Japan, categories of CAM vary widely; CAM previously included supplements mostly, but now exercise and mind and body therapy are also used. Most cancer patients use CAM without any harmful influence on their household economy and cancer treatment; however, in some patients, CAM incurs a large expense and a delay in starting cancer treatment. Therefore, it is important for medical staff and patients to have an opportunity to discuss CAM use. Multiple logistic regression analysis shows that CAM use is significantly associated with younger patients and highly educated families; moreover, there is a possibility that family members who use CAM have a high level of psychological distress. We must pay attention to the physical and the psychological aspects of cancer patients who use CAM and their families. Further studies are needed to investigate the use of each category of CAM, and to understand patients who use CAM and who die at home or in hospitals other than palliative care units.