Palliative medicine
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Palliative medicine · Sep 2010
An exploration of the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities.
Research suggests that shortcomings exist in the provision of palliative care to people with intellectual disabilities. This mixed-methods study aimed to describe the experience, confidence and attitudes of staff to the provision of palliative care to people with intellectual disabilities. The sample was drawn from the population of one Health Service Executive area in Ireland. ⋯ Both palliative care and intellectual disability services staff lacked confidence in their ability to provide palliative care. Staff were challenged by perceived 'differences' and 'difficulties' in the provision of care. They endorsed a partnership approach to care but focus group discussions revealed that a shared desire to cooperate was insufficient to guarantee effective collaboration.
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Palliative medicine · Sep 2010
Multicenter Study Comparative StudyAttitudes towards weight and weight assessment in oncology patients: survey of hospice staff and patients with advanced cancer.
The objective of this study was to compare attitudes of hospice staff towards weight loss and weight assessment in the hospice setting with those of patients with advanced malignancy in the hospital outpatient setting. Two paper-based questionnaires (one for staff and one for patients) were designed. The staff survey was circulated to all hospices in the UK and Ireland, and the patient questionnaire was given to patients attending three oncological care clinics in Belfast, Northern Ireland; Wolverhampton, England; and Auckland, New Zealand. ⋯ However, 124/129 (96%) of patients with advanced cancer reported that they had never found the experience of being weighed in a healthcare facility upsetting. Some 95/129 (74%) of patients weighed themselves at home and 89% would want to know if their weight was changing. While there is reluctance on the part of many hospice staff to weigh patients, most patients with advanced malignancy in the hospital setting do not report weight measurement to be upsetting.
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Palliative medicine · Jul 2010
Multicenter Study Comparative StudyCurrent and planned palliative care service provision for chronic obstructive pulmonary disease patients in 239 UK hospital units: comparison with the gold standards framework.
Patients with chronic obstructive pulmonary disease report a symptom burden similar in magnitude to terminal cancer patients yet service provision and access has been reported as poor. In the absence of a specific national chronic obstructive pulmonary disease service framework the gold standards framework might support service developments. We surveyed 239 UK acute hospital units admitting chronic obstructive pulmonary disease patients, comprising 98% of all acute trusts, about their current and planned provision for palliative care services. ⋯ Whilst 66% of units had plans to develop palliative care services, when mapped against the gold standards framework few were directly relevant and only three of the seven key standards were covered to any significant degree. We conclude that service provision remains poor and access is hindered by a lack of proactive initiation of discussion. Planned developments in chronic obstructive pulmonary disease palliative care services also lack a strategic framework that risks holistic design.
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Palliative medicine · Jul 2010
Multicenter StudyReconciling informed consent and 'do no harm': ethical challenges in palliative-care research and practice in chronic obstructive pulmonary disease.
The challenges associated with patient-based research in palliative care are well documented. This paper focuses on the ethical challenges and discusses them in the context of a pilot study to explore the palliative-care needs of patients with moderate and severe chronic obstructive pulmonary disease. ⋯ The impact of this ethical advice on patients' ability to give fully informed consent is discussed. This paper highlights a requirement for appropriately resourced and well-managed studies in palliative care, and identifies a need for the development of appropriate strategies in order to ensure the informed participation of patients with non-cancer diagnoses in palliative-care research.
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Palliative medicine · Jul 2010
ReviewCultural conceptualizations of hospice palliative care: more similarities than differences.
The role of culture is significant in hospice palliative care (HPC). While mainstream HPC has been well described in many Western countries, there is no conceptual clarity regarding the meaning of HPC among minority cultures and ethnicities. ⋯ They highlight: (i) that HPC should attend to the physical, psychosocial and spiritual aspects of death and dying; (ii) that the ideal HPC provider demonstrates excellent knowledge and expertise about end-of-life care, and is respectful, genuine and compassionate; and (iii) that HPC should include a range of resources that alleviate the potential burdens associated with end-of-life care. The synthesis of this knowledge suggests that expectations regarding the scope of HPC across ethnic and cultural groups have more similarities than differences to the goals of mainstream HPC.