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      Dying in acute hospitals: voices of bereaved relatives

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          Abstract

          Background

          Internationally there is an increasing concern about the quality of end-of-life care (EoLC) provided in acute hospitals. More people are cared for at end of life and die in acute hospitals than in any other healthcare setting. This paper reports the views of bereaved relatives on the experience of care they and the person that died received during their last admission in two university adult acute tertiary hospitals.

          Methods

          Relatives of patients who died were invited to participate in a post-bereavement postal survey. An adapted version of VOICES (Views of Informal Carers - Evaluation of Services) questionnaire was used. VOICES MaJam has 36 closed questions and four open-ended questions. Data were gathered in three waves and analysed using SPSS and NVivo. 356 respondents completed the survey (46% response rate).

          Results

          The majority of respondents (87%: n = 303) rated the quality of care as outstanding, excellent or good during the last admission to hospital. The quality of care by nurses, doctors and other staff was highly rated. Overall, care needs were well met; however, findings identified areas of care which could be improved, including communication and the provision of emotional and spiritual support. In addition, relatives strongly endorsed the provision of EoLC in single occupancy rooms, the availability of family rooms on acute hospital wards and the provision of bereavement support.

          Conclusions

          This research provides a powerful snapshot in time into what works well and what could be improved in EoLC in acute hospitals. Findings are reported under several themes, including the overall quality of care, meeting care needs, communication, the hospital environment and support for relatives. Results indicate that improvements can be made that build on existing good practice that will enhance the experience of care for dying persons and their relatives. The study adds insights in relation to relative’s priorities for EoLC in acute hospitals and can advance care providers’, policy makers’ and educationalists’ priorities for service improvement.

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          Most cited references72

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          Family perspectives on end-of-life care at the last place of care.

          Over the past century, nursing homes and hospitals increasingly have become the site of death, yet no national studies have examined the adequacy or quality of end-of-life care in institutional settings compared with deaths at home. To evaluate the US dying experience at home and in institutional settings. Mortality follow-back survey of family members or other knowledgeable informants representing 1578 decedents, with a 2-stage probability sample used to estimate end-of-life care outcomes for 1.97 million deaths from chronic illness in the United States in 2000. Informants were asked via telephone about the patient's experience at the last place of care at which the patient spent more than 48 hours. Patient- and family-centered end-of-life care outcomes, including whether health care workers (1) provided the desired physical comfort and emotional support to the dying person, (2) supported shared decision making, (3) treated the dying person with respect, (4) attended to the emotional needs of the family, and (5) provided coordinated care. For 1059 of 1578 decedents (67.1%), the last place of care was an institution. Of 519 (32.9%) patients dying at home represented by this sample, 198 (38.2%) did not receive nursing services; 65 (12.5%) had home nursing services, and 256 (49.3%) had home hospice services. About one quarter of all patients with pain or dyspnea did not receive adequate treatment, and one quarter reported concerns with physician communication. More than one third of respondents cared for by a home health agency, nursing home, or hospital reported insufficient emotional support for the patient and/or 1 or more concerns with family emotional support, compared with about one fifth of those receiving home hospice services. Nursing home residents were less likely than those cared for in a hospital or by home hospice services to always have been treated with respect at the end of life (68.2% vs 79.6% and 96.2%, respectively). Family members of patients receiving hospice services were more satisfied with overall quality of care: 70.7% rated care as "excellent" compared with less than 50% of those dying in an institutional setting or with home health services (P<.001). Many people dying in institutions have unmet needs for symptom amelioration, physician communication, emotional support, and being treated with respect. Family members of decedents who received care at home with hospice services were more likely to report a favorable dying experience.
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            End-of-life care preferences and needs: perceptions of patients with chronic kidney disease.

            Despite high mortality rates, surprisingly little research has been done to study chronic kidney disease (CKD) patients' preferences for end-of-life care. The objective of this study was to evaluate end-of-life care preferences of CKD patients to help identify gaps between current end-of-life care practice and patients' preferences and to help prioritize and guide future innovation in end-of-life care policy. A total of 584 stage 4 and stage 5 CKD patients were surveyed as they presented to dialysis, transplantation, or predialysis clinics in a Canadian, university-based renal program between January and April 2008. Participants reported relying on the nephrology staff for extensive end-of- life care needs not currently systematically integrated into their renal care, such as pain and symptom management, advance care planning, and psychosocial and spiritual support. Participants also had poor self-reported knowledge of palliative care options and of their illness trajectory. A total of 61% of patients regretted their decision to start dialysis. More patients wanted to die at home (36.1%) or in an inpatient hospice (28.8%) compared with in a hospital (27.4%). Less than 10% of patients reported having had a discussion about end-of-life care issues with their nephrologist in the past 12 months. Current end-of-life clinical practices do not meet the needs of patients with advanced CKD.
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              Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life.

              Religion and spirituality play a role in coping with illness for many cancer patients. This study examined religiousness and spiritual support in advanced cancer patients of diverse racial/ethnic backgrounds and associations with quality of life (QOL), treatment preferences, and advance care planning. The Coping With Cancer study is a federally funded, multi-institutional investigation examining factors associated with advanced cancer patient and caregiver well-being. Patients with an advanced cancer diagnosis and failure of first-line chemotherapy were interviewed at baseline regarding religiousness, spiritual support, QOL, treatment preferences, and advance care planning. Most (88%) of the study population (N = 230) considered religion to be at least somewhat important. Nearly half (47%) reported that their spiritual needs were minimally or not at all supported by a religious community, and 72% reported that their spiritual needs were supported minimally or not at all by the medical system. Spiritual support by religious communities or the medical system was significantly associated with patient QOL (P = .0003). Religiousness was significantly associated with wanting all measures to extend life (odds ratio, 1.96; 95% CI, 1.08 to 3.57). Many advanced cancer patients' spiritual needs are not supported by religious communities or the medical system, and spiritual support is associated with better QOL. Religious individuals more frequently want aggressive measures to extend life.
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                Author and article information

                Contributors
                +353 1 8032117 , docoimin@mater.ie
                prizemag@tcd.ie
                +353 1 4103703 , bkorn@stjames.ie
                +353 1 7168593 , sarah.donnelly@ucd.ie
                hynesg2@tcd.ie
                Journal
                BMC Palliat Care
                BMC Palliat Care
                BMC Palliative Care
                BioMed Central (London )
                1472-684X
                31 October 2019
                31 October 2019
                2019
                : 18
                : 91
                Affiliations
                [1 ]ISNI 0000 0004 0488 8430, GRID grid.411596.e, End-of-Life Care, , Mater Misericordiae University Hospital, Quality and Patient Safety Directorate, ; Eccles Street, Dublin 7, Ireland
                [2 ]ISNI 0000 0004 1936 9705, GRID grid.8217.c, Trinity Centre for Practice and Healthcare Innovation, School of Nursing and Midwifery, , Trinity College Dublin, ; Dublin, Ireland
                [3 ]End-of-Life Care, Hospice Friendly Hospital Programme, 1st Floor CEO Building, St. James’s Hospital, James Street, Dublin 8, Ireland
                [4 ]ISNI 0000 0001 0768 2743, GRID grid.7886.1, Social Work, School of Social Policy, Social Work and Social Justice, , University College, ; Dublin, Ireland
                [5 ]ISNI 0000 0004 1936 9705, GRID grid.8217.c, Palliative Care, School of Nursing & Midwifery, , Trinity College Dublin, ; Dublin, Ireland
                Author information
                http://orcid.org/0000-0002-1465-8714
                Article
                464
                10.1186/s12904-019-0464-z
                6824032
                31672137
                9eff3586-f1f1-4dc9-a423-cf4484f654e2
                © The Author(s). 2019

                Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 6 December 2018
                : 12 September 2019
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2019

                Anesthesiology & Pain management
                end-of-life care,palliative care,acute hospital,quality of care,bereaved relatives,quantitative,voices,bereavement,dying,mortality feedback survey

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