Palliative medicine
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Palliative medicine · Mar 2010
ReviewReview: the quality of dying and death: a systematic review of measures.
To determine whether modern medicine is facilitating 'good' deaths, appropriate measures of the quality of dying and death must be developed and utilized. The purpose of this paper is to identify quality of dying and death measurement tools and to determine their quality. MEDLINE (1950-2008), Healthstar (1966-2008), and CINAHL (1982-2008) were searched using keyword terms 'quality of dying/death' and 'good/bad death'. ⋯ Of the six published measures reviewed, the Quality of Dying and Death questionnaire (QODD) is the most widely studied and best validated. Strategies to measure the quality of dying and death are becoming increasingly rigorous. Further research is required to understand the factors influencing the ratings of the quality of dying and death.
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Palliative medicine · Mar 2010
Multicenter StudyEnd-of-life issues in acute stroke care: a qualitative study of the experiences and preferences of patients and families.
The aims of this qualitative study were to identify patients' and family members' experiences of acute stroke and their preferences for end-of-life care. Twenty-eight purposely sampled patients with an acute stroke who had high (n = 13) and low (n = 15) disability were selected from 191 sequential cases admitted to two general hospitals in north-east England. In addition, 25 family members of other stroke patients were recruited. ⋯ No family member reported being offered the possibility of the patient dying at home. Uncertainty about prognosis is inevitable in clinical practice, and this can be difficult for patients and families. Our findings demonstrate the importance of improving communication between patient, family and health professionals for seriously ill patients with stroke in UK hospitals.
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Palliative medicine · Mar 2010
ReviewReview: a narrative review of the published ethical debates in palliative care research and an assessment of their adequacy to inform research governance.
The quality of research, and the resulting quality of evidence available to guide palliative care, is dependent on the ethical decisions underpinning its design, conduct and report. Whilst much has been published debating the ethics of palliative care research, an assessment of the quality and synthesis of the central debates is not available. Such a review is timely to inform research governance. ⋯ The debate was rich in quality and knowledge with respect to the protection of the dignity, rights and safety of research participants, but less developed in relation to those of researchers and other staff. There is also little debate about the ethics of reporting of research and the ethics underpinning research leadership. A framework is offered that reconciles the ethical issues raised with potential methodological strategies identified from the review.
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Palliative medicine · Mar 2010
Multicenter StudyInviting the absent members: examining how caregivers' participation affects hospice team communication.
This paper is a secondary observation of a larger pilot study. The Assessing Caregivers for Team Intervention via Video Encounters intervention project enabled caregiver participation in hospice interdisciplinary team meetings. ⋯ Analysis found that team meetings with participating caregivers had better team outcomes, with more patient-centered goals, increased discussion of biopsychosocial problems, and the development of interdisciplinary care plans occurring more often than in the traditional hospice team meetings. Findings from this study show benefits for inclusion of caregivers in hospice team meetings.
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Palliative medicine · Mar 2010
Measuring quality of life in pediatric palliative care: challenges and potential solutions.
Annually, about 500,000 children are coping with life-limiting illnesses in the USA. Integrated pediatric palliative care program could benefit some of these children by improving their health-related quality of life (HRQOL). To measure the effect of pediatric palliative care programs on HRQOL, a valid and reliable tool must be identified. ⋯ Results of the analyses suggest the Pediatric Quality of Life 4.0 does not have valid psychometric properties for measuring HRQOL within this population. Our study documents several challenges in using the generic instrument to measure HRQOL in pediatric palliative care setting. We point out future directions to refine or develop HRQOL instruments for this population of vulnerable children.