Objective: To determine the public's understanding of and views about a range of ethical issues in relation to death and dying. Design: Random, digit-dialling, telephone interview. Setting: Ireland. Participants: 667 adult individuals. Results: The general public are unfamiliar with terms associated with end-of-life care. Although most want to be informed if they have a terminal illness, they also value family support in this regard. Most of the respondents believe that competent patients have the right to refuse life-saving treatment. Most also (mistakenly) believe that families, either alone or with physicians, have the authority to make decisions about starting or stopping treatment for incompetent patients. Most Irish people are more concerned about the quality of their dying than death itself. Religious commitment is important to most Irish people, and this impacts on their views about medical treatment and care at the end of life. Conclusions: The study paints a picture of a general public that is not very comfortable with or informed about the processes of dying and death. Great sensitivity is required of health professionals who must negotiate the timing and the context of breaking of bad news with patients and families. Educational interventions, public and organisational policies and legislation need to address the uncertainty that surrounds the role of professionals and families in making decisions for dying patients
to dementia service plans; To build collaborative and mutually supportive ways of working with local dementia services; To engage with the community in the development of Dementia Action Alliances. Conclusions Key learning from this process is that hospices need to be proactive to ensure their service is responsive to people with dementia. Community engagement and cross organisational working is crucial to this with the Hospice being involved in dementia service development and highlighting their commitment to equality of access for people with dementia and their families. Context People with dementia may receive sub-optimal end-oflife care (EoLC) in comparison with those who are cognitively intact (Lillyman and Bruce, 2016). Care home staff report feeling poorly-equipped to manage EoLC in dementia (Kupeli et al., 2016). Anecdotal evidence from the delivery of the ABC End of Life Care education programme for care homes by the Hospice of St Francis found challenges for staff included assessment, recognition of dying and symptom control. P-135The Dementia Nurse in Care Homes project aims to support care home staff in improving the quality of life of people with dementia and their families. A dementia nurse from the Hospice of St Francis will work in three specialist dementia units, a residential care home, a nursing home and a mental health care unit. Background Dementia is a progressive life-limiting illness. People with dementia value planning ahead. It allows them to express wishes and preferences and reduces anxiety. With the enactment of The Assisted Decision Making (Capacity) Act 2015 guidance in relation to advance care planning and advance healthcare directives with people with dementia is required by health and social care professionals. Methods An expert advisory group was established. A systematic literature review, searching online databases, CINAHL and PubMed was carried out. Grey literature was also accessed. The themes were presided on by the expert advisory group. Identified literature review themes directed the scope of the guidance. Results 288 articles were deemed appropriate. Post review with the expert advisory group the scope of the guidance document was extended to reach the person with dementia and family carers as well as healthcare staff across all settings.The themes from the literature include:1. Advance care planning and advance healthcare directives with people with dementia a. Advance care planning is difficult to engage in due to fluctuating capacity. 2. Family members:a. Uncertain about roles in advance care planning and having conversations. 3. Professional uncertainty a. Time constraints, lack of knowledge and understanding of dementia, advance care planning and legal responsibilities are factors.Guidance is offered on each on each of the above areas. Conclusion A guidance document has been prepared for health and social care staff to provide palliative care to people with dementia. The document will be published and made available via the Irish Hospice Foundation website.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
hi@scite.ai
10624 S. Eastern Ave., Ste. A-614
Henderson, NV 89052, USA
Copyright © 2024 scite LLC. All rights reserved.
Made with 💙 for researchers
Part of the Research Solutions Family.