BMJ supportive & palliative care
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BMJ Support Palliat Care · Jun 2014
Caring for those who die at home: the use and validation of 'Care Of the Dying Evaluation' (CODE) with bereaved relatives.
As well as facilitating patients' wish to die at home, evaluating quality of care in this setting is essential. Postbereavement surveys with family members represent one assessment method. 'Care Of the Dying Evaluation' (CODE) is a 40-item self-completion postbereavement questionnaire, based on the key components of best practice for care of the dying. ⋯ 'CODE' represents a user-friendly, comprehensive outcome measure for care of the dying and has been found to be valid and reliable. CODE could potentially be used to benchmark individual organisations and identify areas for improvement.
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BMJ Support Palliat Care · Mar 2014
ReviewCordotomy in mesothelioma-related pain: a systematic review.
Cordotomy can be effective in relieving pain for patients with mesothelioma, but the evidence to support continued provision is limited. This review forms part of the Invasive Neurodestructive Procedures in Cancer Pain pilot study: The role of cordotomy in mesothelioma-related pain in the UK. ⋯ The available evidence is significantly limited in quantity and quality. Although it seems to suggest that cordotomy might be safe and effective in this setting, more reliable evidence is needed to aid decision making on continued provision. A national registry for cordotomy would be a valuable first step in this process.
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It is now accepted that teaching in palliative medicine should be integrated throughout the medical undergraduate curriculum. Recommendations suggest the inclusion of knowledge areas such as symptom control, as well as more attitudinal aspects such as teamwork and understanding patient and carer perspectives on illness. These subjects should be taught on a stepwise basis, introducing concepts at an early stage and then be built on throughout training. ⋯ These were led by the patient/carer/professionals' experiences and further explored with facilitated questions by the students. The sessions have been evaluated well by all involved, including patients, carers, multi-disciplinary team members and palliative medicine doctors. The learning objectives (to understand patient perspectives, multi-disciplinary working and holistic care) were achieved, along with discussion of professionalism.
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BMJ Support Palliat Care · Mar 2014
The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices.
Carers of patients with high-grade primary malignant glioma (PMG) are known to face extraordinary challenges, as they care for patients with multiple profound and often devastating physical, cognitive and behavioural changes. This study aimed to understand the supportive and palliative care needs in this setting, with a particular focus upon care at the end-of-life, which has hitherto been neglected. ⋯ The results of this study shed new light on providing timely information and palliative care to support carers. We call for health services to reconsider the current medical model for this patient group, where patients are the centre of care, information and support, towards a more collaborative model which places carers and patients into a partnership.
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BMJ Support Palliat Care · Mar 2014
Experience of long-term use of non-invasive ventilation in motor neuron disease: an interpretative phenomenological analysis.
Although non-invasive ventilation (NIV) can promote quality of life in motor neuron disease (MND), previous studies have disregarded the impact of progression of illness. This study explored how patients' perceptions of NIV treatment evolve over time and how this was reflected in their adherence to NIV. ⋯ This exploratory study suggests that a positive coping style, adaptation and hope are key factors for psychological well-being and better adherence to NIV. More studies are needed to determine these relationships.