International journal of palliative nursing
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In the past, ethics committees and researchers have avoided research among vulnerable groups because of prevailing perceptions that such research is unethical and difficult. Taking an opposite stand, this article will argue that it is in fact unethical not to research vulnerable populations because, by excluding potential participants from research endeavours, they are being deprived of the benefits to be gained from research. Albeit well meaning, people in vulnerable populations are also being subjected to the paternalistic attitudes of those who believe they know what is in the best interests of others. ⋯ In contrast, the risks associated with researching vulnerable populations appear to be minimal. Yet, there is still evidence that health care professionals and other gatekeepers continue to hinder research amongst vulnerable populations through unilateral decision-making. This article will review existing literature on the topic of research amongst vulnerable populations, as well as contribute to the argument from the author's own study on a sensitive topic.
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Palliative care should be part of integrated care for patients with end-stage respiratory diseases. An intensive inpatient interdisciplinary palliative care programme has been developed for patients with end-stage respiratory diseases in the Netherlands. This programme consists of the management of daily symptoms and care needs to support patients and their families, and maintain or improve quality of life of these patients and their loved ones. ⋯ This article describes the characteristics of the programme and shows the possible benefits of an intensive patient-centred interdisciplinary palliative care programme for patients with end-stage respiratory diseases. Palliative care programmes can be the final step in the chain of care for patients with respiratory diseases. Further research is necessary to study whether, and to what extent, a patient-centred interdisciplinary palliative care programme for end-stage respiratory diseases may improve health status, daily symptom burden, patient satisfaction and quality of dying.