Regional Differences in Quality of Care at Palliative Care Units (PCUs), and Complicated Grief and Depression of Bereaved Family Members: Results from a Nationwide Bereavement Survey in Japan

Purpose To clarify the bereaved family's perceptions about the appropriateness of timing when physicians first referred patients to palliative care units, and to identify the factors contributing to family-perceived late referrals. Subjects and Methods A multicenter questionnaire survey was conducted on 630 bereaved family members of cancer patents who were admitted to palliative care units in Japan. A total of 318 responses were analyzed (effective response rate, 62%). Results Half of the bereaved family members regarded the timing of referrals to palliative care units as late or very late, while less than 5% of families reported early referrals (very late [19%, n = 59], late [30%, n = 96], appropriate [48%, n = 151], early [1.6%, n = 5], and very early [2.2%, n = 7]). Multiple regression analyses revealed that the independent determinants of family-perceived late referrals were: family belief before admission that palliative care shortens the patient's life, insufficient in-advance discussion about preferred end-of-life care between patients/families and physicians, families' insufficient preparation for changes of patient conditions, and hospital admission before referrals. Conclusion In Japan, the timing of referrals to palliative care units was late or very late from the families' perspectives. The independent determinants of family-perceived late referrals were: family misconception about palliative care, inadequate communication with physicians, and families' insufficient preparation for deterioration of patients' conditions. Systematic strategies to overcome these barriers would contribute to providing appropriate palliative care at all stages of cancer.

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Quality of Care and Satisfaction With Care on Palliative Care Units

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2015.10.006 ◽

2016 ◽

Vol 51 (2) ◽

pp. 184-192 ◽

Cited By ~ 21

Author(s):

Kirsten Wentlandt ◽

Dori Seccareccia ◽

Nanor Kevork ◽

Kevin Workentin ◽

Susan Blacker ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

Satisfaction With Care ◽

Palliative Care Units

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Association between Quality of End-of-Life Care and Possible Complicated Grief among Bereaved Family Members

Journal of Palliative Medicine ◽

10.1089/jpm.2013.0552 ◽

2014 ◽

Vol 17 (9) ◽

pp. 1025-1031 ◽

Cited By ~ 23

Author(s):

Kaya Miyajima ◽

Daisuke Fujisawa ◽

Kimio Yoshimura ◽

Masaya Ito ◽

Satomi Nakajima ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Complicated Grief ◽

Life Care ◽

Bereaved Family

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Quality of death, rumination, and posttraumatic growth among bereaved family members of cancer patients in home palliative care

Psycho-Oncology ◽

10.1002/pon.4446 ◽

2017 ◽

Vol 26 (12) ◽

pp. 2168-2174 ◽

Cited By ~ 5

Author(s):

Kayo Hirooka ◽

Hiroki Fukahori ◽

Kanako Taku ◽

Taisuke Togari ◽

Asao Ogawa

Keyword(s):

Palliative Care ◽

Posttraumatic Growth ◽

Cancer Patients ◽

Family Members ◽

Quality Of Death ◽

Bereaved Family

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Beliefs and Perceptions About Parenteral Nutrition and Hydration by Family Members of Patients With Advanced Cancer Admitted to Palliative Care Units: A Nationwide Survey of Bereaved Family Members in Japan

Journal of Pain and Symptom Management ◽

10.1016/j.jpainsymman.2020.03.006 ◽

2020 ◽

Vol 60 (2) ◽

pp. 355-361 ◽

Cited By ~ 1

Author(s):

Koji Amano ◽

Isseki Maeda ◽

Tatsuya Morita ◽

Kento Masukawa ◽

Yoshiyuki Kizawa ◽

...

Keyword(s):

Palliative Care ◽

Parenteral Nutrition ◽

Advanced Cancer ◽

Family Members ◽

Nationwide Survey ◽

Nutrition And Hydration ◽

Palliative Care Units ◽

Bereaved Family

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J-HOPE study: Evaluation of end-of-life cancer care in Japan from the perspective of bereaved family members

Journal of Clinical Oncology ◽

10.1200/jco.2009.27.15_suppl.9577 ◽

2009 ◽

Vol 27 (15_suppl) ◽

pp. 9577-9577

Author(s):

M. Miyashita ◽

T. Morita ◽

K. Sato ◽

S. Tsuneto ◽

Y. Shima

Keyword(s):

Palliative Care ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Institutional Review Boards ◽

Life Care ◽

Knowledge And Skills ◽

Bereaved Family ◽

Care Evaluation

9577 Background: The Japan Hospice and Palliative Care Evaluation (J-HOPE) study was conducted in 2007 and 2008. The aim of the study was to evaluate the quality of end-of-life care at regional cancer centers (CCs), inpatient palliative care units (PCUs), and home hospices (HHs) in Japan from the perspective of bereaved family members. Methods: A nationwide cross-sectional mail survey was conducted in 2007 and 2008. The survey was sent to bereaved families 6–18 months after the death of a patient at 56 CCs, 100 PCUs, or 14 HHs. Outcome measures were the good death inventory, the care evaluation scale, and overall satisfaction with care. The protocol of this study was approved by the institutional review boards of each participating institution. Results: Of the 13,181 bereaved family members that received the survey, 8,163 (62%) participants returned their responses. Among bereaved family members, significantly fewer responded that patients were free from physical distress at CCs (50%) than PCUs (80%) and HHs (73%) (P<0.0001). Significantly fewer patients trusted the physicians at CCs (79%) when compared with PCUs (83%) and HHs (88%) (P<0.0001). Significantly fewer patients were valued as people at CCs (83%) than PCUs (93%) and HHs (95%) (P<0.0001). In addition, significantly fewer participants felt physicians should have worked to improve the patients' symptoms more quickly at CCs (55%) when compared with PCUs (78%) and HHs (77%) (P<0.0001). Significantly fewer participants felt nurse should improve their knowledge and skills regarding end-of-life care at CCs (51%) when compared with PCUs (76%) and HHs (78%) (P<0.0001). A total of 51% of participants reported that nurses should improve their knowledge and skills regarding end-of-life care. Finally, significantly fewer participants were satisfied with the end-of-life care provided by CCs (80%) when compared with PCUs (93%) and HHs (94%) (P<0.0001). Conclusions: Overall, the bereaved family members appreciated the end-of-life care provided by CCs, PCUs, and HHs in Japan. However, in some situations, the quality of end-of-life care provided by CCs was lower than that provided by PCUs and HHs. No significant financial relationships to disclose.

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Assessing quality of end-of-life hospital care in a southern European regional health service

International Journal of Technology Assessment in Health Care ◽

10.1017/s0266462305050646 ◽

2005 ◽

Vol 21 (4) ◽

pp. 464-470 ◽

Cited By ~ 4

Author(s):

Elena Aldasoro ◽

Adelina Pérez Alonso ◽

Laureano Ribacoba ◽

Santiago Esnaola ◽

Maite Olaizola ◽

...

Keyword(s):

Palliative Care ◽

Quality Of Care ◽

End Of Life ◽

Cancer Patients ◽

Hospital Care ◽

Symptom Control ◽

Hospital Services ◽

Palliative Care Units ◽

Clinical Records

Objectives:During the final period of life, patients with cancer in the Basque Country are given treatment in different types of hospital care. This study compared the quality of care according to the type of care in one of the autonomous communities in Spain.Methods:A retrospective study was carried out of cancer patients who died in conventional hospital services, home hospitalization services, and palliative care units. In addition to hospital stay and readmission number, variables based on the recommendations of Spanish Society for Palliative Care were studied.Results:End-of-life was diagnosed in 57 percent of a sample of 486 patients, 3 days before death (median). The use of symptom control scales was only documented in the clinical records of eight patients. Sociofamily evaluation was not found. Patients in conventional hospital services were less frequently diagnosed with end-of-life and agony and were significantly different from the rest in the reasons for admission, symptoms assessed, drugs used, administration routes, and dosage forms. Pain was evaluated in 50 percent of the patients and was better controlled in palliative care units. Patients not diagnosed with agony (52 percent) were more frequently not given specific treatment.Conclusions:End-of-life in cancer patients was diagnosed too late. The quality of care in palliative care units and by home hospitalization service was better than that in conventional hospitalization. Nevertheless, there were areas for improvement in the three modalities of care.

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