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Improving choice at end of life: a descriptive analysis of the impact and costs of the Marie Curie delivering choice programme in Lincolnshire
- Authors:
- ADDICOTT Rachael, DEWAR Steve
- Publisher:
- King's Fund
- Publication year:
- 2008
- Pagination:
- 45p.
- Place of publication:
- London
This is a descriptive analysis of the impact and costs of new services as part of the Marie Curie Delivering Choice Programme, which was launched in 2004. Palliative care is an increasing policy concern. Although the majority of people report that they would choose to die in their home, only a minority of patients achieve this wish. The Delivering Choice Programme aims to develop and help provide the best possible service for patients at the end of their lives.
"Choice" in end-of-life decision making researching fact or fiction?
- Authors:
- DROUGHT Theresa S., KOENIG Barbara A.
- Journal article citation:
- Gerontologist, 42(Special Issue III), October 2002, pp.114-128.
- Publisher:
- Oxford University Press
The contribution of bioethics to clinical care at the end of life (EOL) deserves critical scrutiny. Researchers have rarely questioned the normative power of autonomy-based bioethics practices. Research on the ethical dimensions of EOL decision making has focused on an idealized discourse of patient "choice" that requires patients to embrace their dying to receive excellent palliative care. There is little or no empirical evidence to support the autonomy paradigm of patient "choice" in EOL decision making. It is exceedingly difficult to identify, study, and critique normative assumptions without creating them, reproducing them, or obliterating them in the process.
Ethics and dementia: mapping the literature by bibliometric analysis
- Authors:
- BALDWIN Clive, et al
- Journal article citation:
- International Journal of Geriatric Psychiatry, 18(1), January 2003, pp.41-54.
- Publisher:
- Wiley
This paper reports on a bibliometric analysis of keywords in the literature on ethics and dementia during the period 1980-2000. Keywords were drawn from titles, abstracts and keyword fields of 14 bibliographic databases and clustered in to 19 categories. These categories were then examined for their frequency and co-occurrences. Four categories appear consistently and frequently in the literature: professional care, end-of-life issues, decision-making and treatment. Other issues come and go (such as quality-of-life issues) while others appear to respond to outside events (e.g. feeding issues). The research literature is based predominantly on surveys or studies soliciting responses to predefined issues. Little research has been undertaken to establish the range of ethical issues for either family members or professionals
Research design in end-of-life research: state of science
- Author:
- GEORGE Linda K.
- Journal article citation:
- Gerontologist, 42(Special Issue III), October 2002, pp.86-98.
- Publisher:
- Oxford University Press
Although much has been learned from research to date, limitations in the knowledge base are substantial. The most fundamental problems identified are conceptual and include failure to define dying; neglect of the distinctions among quality of life, quality of death, and quality of end-of-life care. Methodologically, the single greatest problem is the lack of longitudinal studies that cover more than the time period immediately before death. Gaps in the research base include insufficient attention to psychological and spiritual issues, the prevalence of psychiatric disorder and the effectiveness of the treatment of such disorders among dying persons, provider and health system variables, social and cultural diversity, and the effects of comorbidity on trajectories of dying.
What's end of life got to do with it?: research ethics with populations at life's end
- Author:
- PHIPPS Etienne J.
- Journal article citation:
- Gerontologist, 42(Special Issue III), October 2002, pp.104-113.
- Publisher:
- Oxford University Press
This study addressed key concerns that gave rise to the question of whether special guidelines were needed to monitor research at the end of life. Discussion of whether special guidelines are indicated focuses on four questions concerning: time periods; methods and approaches; informed consent; and obligations of researchers. Although research involving patients at end of life does present important ethical and moral challenges to researchers and should be scrutinized carefully by institutional review boards (IRBs), it is argued that special guidelines are not required.