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      Dying in the hospital setting: A systematic review of quantitative studies identifying the elements of end-of-life care that patients and their families rank as being most important

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          Abstract

          Background:

          The majority of expected deaths occur in hospitals where optimal end-of-life care is not yet fully realised, as evidenced by recent reviews outlining experience of care. Better understanding what patients and their families consider to be the most important elements of inpatient end-of-life care is crucial to addressing this gap.

          Aim and design:

          This systematic review aimed to ascertain the five most important elements of inpatient end-of-life care as identified by patients with palliative care needs and their families.

          Data sources:

          Nine electronic databases from 1990 to 2014 were searched along with key internet search engines and handsearching of included article reference lists. Quality of included studies was appraised by two researchers.

          Results:

          Of 1859 articles, 8 met the inclusion criteria generating data from 1141 patients and 3117 families. Synthesis of the top five elements identified four common end-of-life care domains considered important to both patients and their families, namely, (1) effective communication and shared decision making, (2) expert care, (3) respectful and compassionate care and (4) trust and confidence in clinicians. The final domains differed with financial affairs being important to families, while an adequate environment for care and minimising burden both being important to patients.

          Conclusion:

          This review adds to what has been known for over two decades in relation to patient and family priorities for end-of-life care within the hospital setting. The challenge for health care services is to act on this evidence, reconfigure care systems accordingly and ensure universal access to optimal end-of-life care within hospitals.

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          Most cited references20

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          Where do people die? An international comparison of the percentage of deaths occurring in hospital and residential aged care settings in 45 populations, using published and available statistics.

          Place of death, specifically the percentage who die in hospital or residential aged care, is largely unreported. This paper presents a cross-national comparison of location of death information from published reports and available data. Reports of deaths occurring in hospitals, residential aged care facilities, and other locations for periods since 2001 were compiled. Over 16 million deaths are reported in 45 populations. Half reported 54 % or more of all deaths occurred in hospitals, ranging from Japan (78 %) to China (20 %). Of 21 populations reporting deaths of older people, a median of 18 % died in residential aged care, with percentages doubling with each 10-year increase in age, and 40 % higher among women. This place of death study includes more populations than any other known. In many populations, residential aged care was an important site of death for older people, indicating the need to optimise models of end-of-life care in this setting. For many countries, more standardised reporting of place of death would inform policies and planning of services to support end-of-life care.
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            Preparing for the end of life: preferences of patients, families, physicians, and other care providers.

            To examine patients', families', and health care providers' preferences regarding preparation for the end of life, attributes of preparation were generated in qualitative focus group discussions and subsequently tested for generalizability in a quantitative national survey. Respondents from all groups showed consensus on the importance of naming someone to make decisions, knowing what to expect about one's physical condition, having financial affairs in order, having treatment preferences in writing, and knowing that one's physician is comfortable talking about death and dying. Patients were more likely than physicians to want to plan funerals and know the timing of death and less likely than all other groups to want to discuss personal fears. Participants in care of dying patients agree overwhelmingly with the importance of preparation. However, significant barriers to preparation impede it from being a common part of clinical encounters. Further research and training are needed to ensure that the desire for greater preparation is translated into improved action toward preparation in medical practice.
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              Defining priorities for improving end-of-life care in Canada.

              High-quality end-of-life care should be the right of every Canadian. The objective of this study was to identify aspects of end-of-life care that are high in priority as targets for improvement using feedback elicited from patients and their families. We conducted a multicentre, cross-sectional survey involving patients with advanced, life-limiting illnesses and their family caregivers. We administered the Canadian Health Care Evaluation Project (CANHELP) questionnaire along with a global rating question to measure satisfaction with end-of-life care. We derived the relative importance of individual questions on the CANHELP questionnaire from their association with a global rating of satisfaction, as determined using Pearson correlation coefficients. To determine high-priority issues, we identified questions that had scores indicating high importance and low satisfaction. We approached 471 patients and 255 family members, of whom 363 patients and 193 family members participated, with response rates of 77% for patients and 76% for families. From the perspective of patients, high-priority areas needing improvement were related to feelings of peace, to assessment and treatment of emotional problems, to physician availability and to satisfaction that the physician took a personal interest in them, communicated clearly and consistently, and listened. From the perspective of family members, similar areas were identified as high in priority, along with the additional areas of timely information about the patient's condition and discussions with the doctor about final location of care and use of end-of-life technology. End-of-life care in Canada may be improved for patients and their families by providing better psychological and spiritual support, better planning of care and enhanced relationships with physicians, especially in aspects related to communication and decision-making.
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                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                October 2015
                October 2015
                : 29
                : 9
                : 774-796
                Affiliations
                [1 ]Faculty of Health, University of Technology, Sydney, NSW, Australia
                [2 ]Improving Palliative Care through Clinical Trials (ImPaCCT), Sydney, NSW, Australia
                [3 ]South Western Sydney Clinical School, University of New South Wales (UNSW), Sydney, NSW, Australia
                [4 ]School of Nursing, Johns Hopkins University, Baltimore, MD, USA
                [5 ]School of Nursing, The University of Notre Dame Australia, Sydney, NSW, Australia
                [6 ]School of Medicine, The University of Sydney, NSW, Australia
                Author notes
                [*]Claudia Virdun, Faculty of Health, University of Technology, Sydney, Building 10, Level 7, 213 Jones St, Ultimo, Sydney, NSW 2007, Australia. Email: claudia.virdun@ 123456uts.edu.au
                Article
                10.1177_0269216315583032
                10.1177/0269216315583032
                4572388
                25921707
                d947b5cd-890d-4f8f-9d68-d3c3ef2ec25b
                © The Author(s) 2015

                This article is distributed under the terms of the Creative Commons Attribution 3.0 License ( http://www.creativecommons.org/licenses/by/3.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page ( http://www.uk.sagepub.com/aboutus/openaccess.htm).

                History
                Categories
                Review Article

                Anesthesiology & Pain management
                palliative care,hospital,terminal care,consumer participation,satisfaction

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