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

ABSTRACT: Background: Data regarding the quality of end-of-life care for patients with noncancerous illnesses are lacking. Objective: This study aimed to evaluate end-of-life care for patients with noncancerous respiratory disease from the perspective of bereaved family members and explore the factors associated with the quality of patient death and care. Design: This cross-sectional study included patients who had died of noncancerous respiratory disease in general wards of pulmonary department in Japan between 2014 and 2016 and conducted an anonymous self-report questionnaire survey for the patients' bereaved family members. Measurements: We evaluated overall satisfaction with care and the quality of death and end-of-life care using the Good Death Inventory (GDI) and Care Evaluation Scale (CES), respectively. A multiple linear regression analysis was performed to explore the factors associated with these outcomes. Results: In total, 130 questionnaires were distributed, and the effective response rate was 38% and 50 patients were included (median age: 82 [range 58-101] years; 37 men [74%]). Primary diagnoses at death included 29 cases of pneumonia (58%), 15 interstitial lung disease (30%), and 3 chronic obstructive pulmonary disease (6%). Of the bereaved family members, 26 (52%) were spouses, and 19 (38%) were children (median age [range]: 68 [33-102] years, 15 men [30%]). The overall CES and GDI scores (mean ± standard deviation) were 77 ± 15 and 79 ± 15, respectively. The presence of dementia was an independent factor associated with high CES and GDI scores in the multiple linear regression analysis. Conclusions: In patients who died of noncancerous respiratory disease, the presence of dementia could be associated with the higher quality of patient death and care. In dementia, an understanding of the terminal nature of this condition may lead to an appropriate end-of-life care.

SUBMITTER: Imai R

PROVIDER: S-EPMC8675229 | biostudies-literature |

REPOSITORIES: biostudies-literature

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Project description:Even though more than 25% of Americans die in nursing homes, end-of-life care has consistently been found to be less than adequate in this setting. Even for those residents on hospice, end-of-life care has been found to be problematic. This study had 2 research questions; (1) How do family members of hospice nursing home residents differ in their anxiety, depression, quality of life, social networks, perceptions of pain medication, and health compared with family members of community dwelling hospice patients? (2) What are family members' perceptions of and experiences with end-of-life care in the nursing home setting?This study is a secondary mixed methods analysis of interviews with family members of hospice nursing home residents and a comparative statistical analysis of standard outcome measures between family members of hospice patients in the nursing home and family members of hospice patients residing in the community.Outcome measures for family members of nursing home residents were compared (n = 176) with family members of community-dwelling hospice patients (n = 267). The family members of nursing home residents reported higher quality of life; however, levels of anxiety, depression, perceptions of pain medicine, and health were similar for hospice family members in the nursing home and in the community. Lending an understanding to the stress for hospice family members of nursing home residents, concerns were found with collaboration between the nursing home and the hospice, nursing home care that did not meet family expectations, communication problems, and resident care concerns including pain management. Some family members reported positive end-of-life care experiences in the nursing home setting.These interviews identify a multitude of barriers to quality end-of-life care in the nursing home setting, and demonstrate that support for family members is an essential part of quality end-of-life care for residents. This study suggests that nursing homes should embrace the opportunity to demonstrate the value of family participation in the care-planning process.

Project description:ImportanceAlthough family members of patients who die in the intensive care unit commonly experience long-term psychological distress, end-of-life bereavement support programs for such relatives are uncommon. Whether art influences the grief experience of families is largely unexplored.ObjectiveTo explore the influence of personalized paintings created to honor deceased critically ill patients on family members' bereavement experience.Design, setting, and participantsA qualitative descriptive analysis was conducted of semistructured interviews of grieving relatives who received a painting after the death of their loved one. The deceased patients were from a 21-bed medical-surgical intensive care unit. Eleven families were invited to receive a painting, of whom 1 family declined. A total of 22 family members of 10 patients who died in the intensive care unit were interviewed in the study between July 11, 2017, and May 19, 2019.InterventionsPatients were enrolled in an end-of-life care program that elicits and implements wishes of patients and their families to bring peace during the dying process. Selected families of 10 decedents were invited to receive a painting to honor their loved one 1 to 10 months after the patient's death. Using details about the patient's life story, the artist created individualized paintings to commemorate each patient.Main outcomes and measuresThe experiences of family members receiving a personalized painting and its reported influence on their grieving experience.ResultsThe family members of 10 decedents (mean [SD] age, 60 [14] years; 5 women [50%]; 8 White patients [80%]) were interviewed. The central theme of art to facilitate healing was illustrated through the following domains: the cocreation process, painting narratives, postmortem connections, and legacy. The process of cocreating the paintings with the artist and family members involved reminiscing, storytelling, and creativity. Family members emphasized the role of art to facilitate healing, exemplified through connections with images portrayed that deeply resonated with memories of their loved one. Participants indicated that the paintings validated that the patient was remembered, helped families feel less alone during a time of grief, honored the loved one's life, and enhanced connections between family members and clinicians.Conclusions and relevanceThis qualitative study's findings suggest that the creation of personalized paintings commemorating the lives of patients may help foster legacy and postmortem connections with clinicians and may help family members in their healing process.

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

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