School of Historical and Philosophical Studies - Research Publications

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    An ethical pathway for gene editing
    Savulescu, J ; Singer, P (WILEY, 2019-02-01)
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    Cluster randomisation or randomised consent as an appropriate methodology for trials in palliative care: a feasibility study [ISRCTN60243484].
    Fowell, A ; Russell, I ; Johnstone, R ; Finlay, I ; Russell, D (Springer Science and Business Media LLC, 2004-04-27)
    BACKGROUND: Although guidelines for the care of the dying patient exist the evidence base to support the guidelines is poor. Some of the factors contributing to this include failure to recruit to trials, protective healthcare professionals and subsequent attrition from trials due to the death of the patients. Recent studies report favourably on the use of cluster randomisation as an appropriate methodology for use in this patient group. METHODS/DESIGN: A feasibility study, exploring two types of randomisation as appropriate methodology for trials involving dying patients. Cluster randomisation and randomised consent will be utilised following a crossover design at two sites, one oncology ward and one Macmillan unit within the Northwest Wales NHS Trust. All patients commencing on the Integrated Care Pathway (ICP) for the Last Days of Life will be eligible for inclusion in the study. Using the hypothesis that it is not necessary to prescribe an anti-emetic medication when setting up a syringe driver for the dying patient, the study will evaluate different models of research methodology. DISCUSSION: The identification of the most appropriate methodology for use in studies concerning this patient group will inform the development of future clinical studies. Furthermore, the outcomes of this feasibility study will inform the development, of a proposal seeking funding for Wales-wide trials in palliative care. The identification of an appropriate methodology will provide a starting point for the establishment of a robust evidence base for the care of the dying patient.
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    Accuracy of prognosis estimates by four palliative care teams: a prospective cohort study.
    Higginson, IJ ; Costantini, M (Springer Science and Business Media LLC, 2002)
    BACKGROUND: Prognosis estimates are used to access services, but are often inaccurate. This study aimed to determine the accuracy of giving a prognosis range. METHODS AND MEASUREMENTS: A prospective cohort study in four multi-professional palliative care teams in England collected data on 275 consecutive cancer referrals who died. Prognosis estimates (minimum - maximum) at referral, patient characteristics, were recorded by staff, and later compared with actual survival. RESULTS: Minimum survival estimates ranged <1 to 364 days, maximum 7 - 686 days. Mean patient survival was 71 days (range 1 - 734). In 42% the estimate was accurate, in 36% it was over optimistic and in 22% over pessimistic. When the minimum estimate was less than 14 days accuracy increased to 70%. Accuracy was related, in multivariate analysis, to palliative care team and (of borderline significance) patient age. CONCLUSIONS: Offering a prognosis range has higher levels of accuracy (about double) than traditional estimates, but is still very often inaccurate, except very close to death. Where possible clinicians should discuss scenarios with patients, rather than giving a prognosis range.
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    Health biotechnology in China - reawakening of a giant
    Li, ZZ ; Zhang, JC ; Wen, K ; Thorsteinsdottir, H ; Quach, U ; Singer, PA ; Daar, AS (NATURE PUBLISHING GROUP, 2004-12-01)
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    Consensus guidelines on analgesia and sedation in dying intensive care unit patients.
    Hawryluck, LA ; Harvey, WRC ; Lemieux-Charles, L ; Singer, PA (Springer Science and Business Media LLC, 2002-08-12)
    BACKGROUND: Intensivists must provide enough analgesia and sedation to ensure dying patients receive good palliative care. However, if it is perceived that too much is given, they risk prosecution for committing euthanasia. The goal of this study is to develop consensus guidelines on analgesia and sedation in dying intensive care unit patients that help distinguish palliative care from euthanasia. METHODS: Using the Delphi technique, panelists rated levels of agreement with statements describing how analgesics and sedatives should be given to dying ICU patients and how palliative care should be distinguished from euthanasia. Participants were drawn from 3 panels: 1) Canadian Academic Adult Intensive Care Fellowship program directors and Intensive Care division chiefs (N = 9); 2) Deputy chief provincial coroners (N = 5); 3) Validation panel of Intensivists attending the Canadian Critical Care Trials Group meeting (N = 12). RESULTS: After three Delphi rounds, consensus was achieved on 16 statements encompassing the role of palliative care in the intensive care unit, the management of pain and suffering, current areas of controversy, and ways of improving palliative care in the ICU. CONCLUSION: Consensus guidelines were developed to guide the administration of analgesics and sedatives to dying ICU patients and to help distinguish palliative care from euthanasia.
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    Chinese health biotech and the billion-patient market
    Frew, SE ; Sammut, SM ; Shore, AF ; Ramjist, JK ; Al-Bader, S ; Rezaie, R ; Daar, AS ; Singer, PA (NATURE PUBLISHING GROUP, 2008-01-01)
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    Conclusions: promoting biotechnology innovation in developing countries
    Thorsteinsdottir, H ; Quach, U ; Daar, AS ; Singer, PA (NATURE PORTFOLIO, 2004-12-01)
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    Science and society - Genomic medicine and developing countries: creating a room of their own
    Seguin, B ; Hardy, B-J ; Singer, PA ; Daar, AS (NATURE PUBLISHING GROUP, 2008-06-01)
    The notion that developing countries must wait for the developed world to make advances in science and technology that they later import at great cost is being challenged. We have previously argued that developing countries can harness human genetic variation to benefit their populations and economies. Based on our empirical studies of large-scale population genotyping projects in Mexico, India and Thailand, we describe how these resources are being adopted to improve public health and create knowledge-based economies. A significant additional benefit is building the capacity for scientific research and internalizing advances in technology, whatever their source.
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    Waiting lists for radiation therapy: A case study
    D'Souza, DP ; Martin, DK ; Purdy, L ; Bezjak, A ; Singer, PA (BIOMED CENTRAL LTD, 2001-01-01)
    BACKGROUND: Why waiting lists arise and how to address them remains unclear, and an improved understanding of these waiting list "dynamics" could lead to better management. The purpose of this study is to understand how the current shortage in radiation therapy in Ontario developed; the implications of prolonged waits; who is held accountable for managing such delays; and short, intermediate, and long-term solutions. METHODS: A case study of the radiation therapy shortage in 1998-99 at Princess Margaret Hospital, Toronto, Ontario, Canada. Relevant documents were collected; semi-structured, face-to-face interviews with ten administrators, health care workers, and patients were conducted, audio-taped and transcribed; and relevant meetings were observed. RESULTS: The radiation therapy shortage arose from a complex interplay of factors including: rising cancer incidence rates; broadening indications for radiation therapy; human resources management issues; government funding decisions; and responsiveness to previous planning recommendations. Implications of delays include poorer cancer control rates; patient suffering; and strained doctor-patient relationships. An incompatible relationship exists between moral responsibility, borne by government, and legal liability, borne by physicians. Short-term solutions include re-referral to centers with available resources; long-term solutions include training and recruiting health care workers, improving workload standards, increasing compensation, and making changes to the funding formula. CONCLUSION: Human resource planning plays a critical role in the causes and solutions of waiting lists. Waiting lists have harsh implications for patients. Accountability relationships require realignment.
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    Priority setting for new technologies in medicine: A transdisciplinary study
    Gibson, JL ; Martin, DK ; Singer, PA (BMC, 2002-07-18)
    BACKGROUND: Decision makers in health care organizations struggle with how to set priorities for new technologies in medicine. Traditional approaches to priority setting for new technologies in medicine are insufficient and there is no widely accepted model that can guide decision makers. DISCUSSION: Daniels and Sabin have developed an ethically based account about how priority setting decisions should be made. We have developed an empirically based account of how priority setting decisions are made. In this paper, we integrate these two accounts into a transdisciplinary model of priority setting for new technologies in medicine that is both ethically and empirically based. SUMMARY: We have developed a transdisciplinary model of priority setting that provides guidance to decision makers that they can operationalize to help address priority setting problems in their institution.