Bereaved Family Members' Perceived Care at the End of Life for Patients with Noncancerous Respiratory Diseases

Abstract Background/Objective Death in intensive care units (ICUs) may increase bereaved family members’ risk for posttraumatic stress disorder (PTSD). However, posttraumatic stress-related symptoms (hereafter as PTSD symptoms) and their precipitating factors were seldom examined among bereaved family members and primarily focused on associations between PTSD symptoms and patient/family characteristics. We aimed to investigate the course and predictors of clinically significant PTSD symptoms among family members of deceased ICU patients by focusing on modifiable quality indicators for end-of-life ICU care. Method In this longitudinal observational study, 319 family members of deceased ICU patients were consecutively recruited from medical ICUs from two Taiwanese medical centers. PTSD symptoms were assessed at 1, 3, 6, and 13 months post-loss using the Impact of Event Scale-Revised (IES-R). Family satisfaction with end-of-life care in ICUs was assessed at 1 month post-loss. End-of-life care received in ICUs was documented over the patient’s ICU stay. Predictors for developing clinically significant PTSD symptoms (IES-R score ≥ 33) were identified by multivariate logistic regression with generalized estimating equation modeling. Results The prevalence of clinically significant PTSD symptoms decreased significantly over time (from 11.0% at 1 month to 1.6% at 13 months post-loss). Longer ICU stays (adjusted odds ratio [95% confidence interval] = 1.036 [1.006, 1.066]), financial insufficiency (3.166 [1.159, 8.647]), and reported use of pain medications (3.408 [1.230, 9.441]) by family members were associated with a higher likelihood of clinically significant PTSD symptoms among family members during bereavement. Stronger perceived social support (0.937 [0.911, 0.965]) and having a Do-Not-Resuscitate (DNR) order issued before the patient’s death (0.073 [0.011, 0.490]) were associated with a lower likelihood of clinically significant PTSD symptoms. No significant association was observed for family members’ satisfaction with end-of-life care (0.988 [0.944, 1.034]) or decision-making in ICUs (0.980 [0.944, 1.018]). Conclusions The likelihood of clinically significant PTSD symptoms among family members decreased significantly over the first bereavement year and was lower when a DNR order was issued before death. Enhancing social support and facilitating a DNR order may reduce the trauma of ICU death of a beloved for family members at risk for developing clinically significant PTSD symptoms.

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Understanding Bereaved Family Members’ Dissatisfaction with End-of-Life Care in Nursing Homes

Journal of Gerontological Nursing ◽

10.3928/00989134-20120906-94 ◽

2012 ◽

Vol 38 (10) ◽

pp. 49-60 ◽

Cited By ~ 23

Author(s):

Genevieve N. Thompson ◽

Susan E. McClement ◽

Verena H. Menec ◽

Harvey M. Chochinov

Keyword(s):

Nursing Homes ◽

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Bereaved Family

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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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The influence of care place and diagnosis on care communication at the end of life: bereaved family members’ perspective

Palliative & Supportive Care ◽

10.1017/s147895152100016x ◽

2021 ◽

pp. 1-8

Author(s):

Anna O'Sullivan ◽

Anette Alvariza ◽

Joakim Öhlén ◽

Cecilia Larsdotter ex. Håkanson

Keyword(s):

Decision Making ◽

Palliative Care ◽

Nursing Home ◽

End Of Life ◽

Family Members ◽

Palliative Care Unit ◽

Deceased Person ◽

Specialized Palliative Care ◽

Bereaved Family ◽

At Home

Abstract Objective To investigate the influence of care place and diagnosis on care communication during the last 3 months of life for people with advanced illness, from the bereaved family members’ perspective. Method A retrospective survey design using the VOICES(SF) questionnaire with a sample of 485 bereaved family members (aged: 20−90 years old, 70% women) of people who died in hospital was employed to meet the study aim. Results Of the deceased people, 79.2% had at some point received care at home, provided by general practitioners (GPs) (52%), district nurses (36.7%), or specialized palliative home care (17.9%), 27.4% were cared for in a nursing home and 15.7% in a specialized palliative care unit. The likelihood of bereaved family members reporting that the deceased person was treated with dignity and respect by the staff was lowest in nursing homes (OR: 0.21) and for GPs (OR: 0.37). A cancer diagnosis (OR: 2.36) or if cared for at home (OR: 2.17) increased the likelihood of bereaved family members reporting that the deceased person had been involved in decision making regarding care and less likely if cared for in a specialized palliative care unit (OR: 0.41). The likelihood of reports of unwanted decisions about the care was higher if cared for in a nursing home (OR: 1.85) or if the deceased person had a higher education (OR: 2.40). Significance of results This study confirms previous research about potential inequalities in care at the end of life. The place of care and diagnosis influenced the bereaved family members’ reports on whether the deceased person was treated with respect and dignity and how involved the deceased person was in decision making regarding care.

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Bereaved family members' perceptions of end-of-life cancer care in nursing homes, hospices with home care, and acute care hospitals

Journal of Clinical Oncology ◽

10.1200/jco.2004.22.14_suppl.8052 ◽

2004 ◽

Vol 22 (14_suppl) ◽

pp. 8052-8052

Author(s):

D. Brandoff ◽

T. Wetle ◽

M. Bourbonnaire ◽

V. Mor ◽

F. Schiffman ◽

...

Keyword(s):

Nursing Homes ◽

Home Care ◽

End Of Life ◽

Acute Care ◽

Cancer Care ◽

Family Members ◽

Acute Care Hospitals ◽

Bereaved Family

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End-of-life care in community hospitals: the perceptions of bereaved family members

Palliative Medicine ◽

10.1191/0269216306pm1170oa ◽

2006 ◽

Vol 20 (5) ◽

pp. 541-547 ◽

Cited By ~ 22

Author(s):

Sheila Hawker ◽

Chris Kerr ◽

Sheila Payne ◽

David Seamark ◽

Carol Davis ◽

...

Keyword(s):

End Of Life ◽

End Of Life Care ◽

Family Members ◽

Life Care ◽

Community Hospitals ◽

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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