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      Investigation of the awareness of and demand for hospice care and attitudes towards life-sustaining treatment at the end of life among community residents in Hangzhou

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          Abstract

          Background

          To understand the status of residents’ awareness of and demand for hospice care services in Hangzhou and to provide a reference for promoting the formulation of hospice care-related policies in China.

          Methods

          A small cross-sectional survey of 519 adults aged over 40 years old living in the rural-urban fringe and urban area of Xihu District, Hangzhou City, was conducted using convenience sampling and a self-designed questionnaire. The measures assessed awareness of hospice care (13-item scale), attitudes towards life support therapy (3-item scale), and demand for hospice care services (9-item scale).

          Results

          The rate of awareness of hospice care among community residents was 50.30%. A total of 51.0% of residents wanted only comfortable life-sustaining treatment at the end of their lives. The acceptance of hospice care was positively correlated with the degree of understanding (x 2 = 18.382, P = 0.001), and residents in the urban area were more likely to prefer hospice care than residents in the urban-rural fringe (x 2 = 7.186, P = 0.028). Elderly residents showed a stronger tendency to prefer comfortable life support therapy (x 2 = 12.988, P < 0.001). A total of 83.04% of the residents accepted the current necessity for hospice care to be provided in medical institutions. The preferred locations were professional hospice care institutions or general hospitals. A total of 93.64% of the residents agreed that the number of beds in hospice care wards should not exceed 2. In addition, the residents could afford part of the out-of-pocket expenses for hospice care services, with the ability to pay under 200 yuan per day, and the improvement of facilities was expected.

          Conclusions

          To improve public awareness and acceptance of hospice care and promote healthy development in China, it is necessary to promote hospice care education for everyone.

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          Most cited references22

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          Social and clinical determinants of preferences and their achievement at the end of life: prospective cohort study of older adults receiving palliative care in three countries

          Irene J Higginson, Barbara Daveson, R Morrison … (2017)
          Background Achieving choice is proposed as a quality marker. But little is known about what influences preferences especially among older adults. We aimed to determine and compare, across three countries, factors associated with preferences for place of death and treatment, and actual site of death. Methods We recruited adults aged ≥65-years from hospital-based multiprofessional palliative care services in London, Dublin, New York, and followed them for >17 months. All services offered consultation on hospital wards, support for existing clinical teams, outpatient services and received funding from their National Health Service and/or relevant Insurance reimbursements. The New York service additionally had 10 inpatient beds. All worked with and referred patients to local hospices. Face-to-face interviews recorded most and least preferred place of death, treatment goal priorities, demographic and clinical information using validated questionnaires. Multivariable and multilevel analyses assessed associated factors. Results One hundred and thirty eight older adults (64 London, 59 Dublin, 15 New York) were recruited, 110 died during follow-up. Home was the most preferred place of death (77/138, 56%) followed by inpatient palliative care/hospice units (22%). Hospital was least preferred (35/138, 25%), followed by nursing home (20%) and home (16%); hospice/palliative care unit was rarely least preferred (4%). Most respondents prioritised improving quality of life, either alone (54%), or equal with life extension (39%); few (3%) chose only life extension. There were no significant differences between countries. Main associates with home preference were: cancer diagnosis (OR 3.72, 95% CI 1.40–9.90) and living with someone (OR 2.19, 1.33–3.62). Adults with non-cancer diagnoses were more likely to prefer palliative care units (OR 2.39, 1.14–5.03). Conversely, functional independence (OR 1.05, 1.04–1.06) and valuing quality of life (OR 3.11, 2.89–3.36) were associated with dying at home. There was a mismatch between preferences and achievements – of 85 people who preferred home or a palliative care unit, 19 (25%) achieved their first preference. Conclusion Although home is the most common first preference, it is polarising and for 16% it is the least preferred. Inpatient palliative care unit emerges as the second most preferred place, is rarely least preferred, and yet was often not achieved for those who wanted to die there. Factors affecting stated preferences and met preferences differ. Available services, notably community support and palliative care units, require expansion. Contrasting actual place of death with capacity for meeting patient and family needs may be a better quality indicator than simply ‘achieved preferences’. Electronic supplementary material The online version of this article (10.1186/s12877-017-0648-4) contains supplementary material, which is available to authorized users.
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            Awareness and Misperceptions of Hospice and Palliative Care: A Population-Based Survey Study

            Ariel Shalev, Veerawat Phongtankuel, Elissa Kozlov … (2017)
            Despite the documented benefits of palliative and hospice care on improving patients' quality of life, these services remain underutilized. Multiple factors limit the utilization of these services, including patients' and caregivers' lack of knowledge and misperceptions.
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              Public awareness and attitudes toward palliative care in Northern Ireland

              Sonja McIlfatrick, Felicity Hasson, Dorry McLaughlin … (2013)
              Background The World Health Organisation recognises palliative care as a global public health issue and this is reflected at strategic level. Despite this, palliative care may not be universally welcomed. Surveys over the last decade have suggested that the general public have a lack of knowledge and negative perceptions towards palliative care. A detailed and comprehensive understanding of public views is needed in order to target education and policy campaigns and to manage future needs, expectations and resourcing of end of life care. The aim of this study was to establish the current levels of awareness and attitudes towards palliative care among the general public in Northern Ireland. Methods A community-based cross-sectional survey with a population of 3,557 individuals aged over 17 years was performed. Information was collected using a structured questionnaire consisting of 17 items. Open questions were subject to content analysis; closed questions were subject to descriptive statistics with inferential testing as appropriate. Results A total of 600 responses were obtained (response rate 17%). Responses indicated limited knowledge about palliative care. Female gender and previous experience influenced awareness in a positive direction. Respondents who worked in healthcare themselves or who had a close relative or friend who had used a palliative care service were more aware of palliative care and the availability of different palliative care services. Findings reveal the preferred place of care was the family home. The main barriers to raising awareness were fear, lack of interaction with health services and perception of lack of resources. A number of strategies to enhance awareness, access and community involvement in palliative care were suggested. Conclusions Public awareness of the concept of palliative care and of service availability remains insufficient for widespread effective and appropriate palliative care to be accepted as the norm. In particular, those without previous family-related experiences lack awareness. This has implications for palliative care service provision and policy. An increased awareness of palliative care is needed, in order to improve knowledge of and access to services when required, empower individuals, involve communities and ultimately to realise the objectives contained within international strategies for palliative and end-of-life care.
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                Author and article information

                Contributors
                Yanhong Xie: hsyhly2012@qq.com
                Ying Xu:
                ORCID: http://orcid.org/0000-0003-1030-4481
                zjyyhlb2007@126.com
                Journal
                Journal ID (nlm-ta): BMC Palliat Care
                Journal ID (iso-abbrev): BMC Palliat Care
                Title: BMC Palliative Care
                Publisher: BioMed Central (London )
                ISSN (Electronic): 1472-684X
                Publication date (Electronic): 17 August 2020
                Publication date PMC-release: 17 August 2020
                Publication date Collection: 2020
                Volume: 19
                Electronic Location Identifier: 128
                Affiliations
                [1 ]GRID grid.417400.6, ISNI 0000 0004 1799 0055, Department of Geriatrics, , Zhejiang Hospital, ; Hangzhou, 310013 Zhejiang Province China
                [2 ]GRID grid.417400.6, ISNI 0000 0004 1799 0055, Department of Nursing, , Zhejiang Hospital, ; Hangzhou, 310013 Zhejiang Province China
                [3 ]GRID grid.417400.6, ISNI 0000 0004 1799 0055, Zhejiang Hospital, ; Hangzhou, 310013 Zhejiang Province China
                Author information
                http://orcid.org/0000-0003-1030-4481
                Article
                Publisher ID: 628
                DOI: 10.1186/s12904-020-00628-8
                PMC ID: 7433355
                PubMed ID: 32807160
                SO-VID: 213c7b0f-3957-4933-98e9-897b185ee957
                Copyright © © The Author(s) 2020
                License:

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. 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 in a credit line to the data.

                History
                Date received : 17 April 2020
                Date accepted : 5 August 2020
                Funding
                Funded by: Zhejiang Civil Affairs Development Promotion Association
                Funded by: Zhejiang Provincial Medicine and Health Technology Projec
                Award ID: 2019KY003
                Award Recipient :
                Categories
                Subject: Research Article
                Custom metadata
                issue-copyright-statement © The Author(s) 2020

                ScienceOpen disciplines: Anesthesiology & Pain management
                Keywords: hospice care,cognition,end-of-life support therapy,needs,survey
                Data availability:
                ScienceOpen disciplines: Anesthesiology & Pain management
                Keywords: hospice care, cognition, end-of-life support therapy, needs, survey

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