Articles: palliative-care.
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No published protocol to guide the withdrawal of continuous positive airway pressure (CPAP) for patients with COVID-19 exists. ⋯ The use of the protocol ensures a comfortable and dignified death and supports the delivery of individualised care at the end of life. Future research on this topic should focus on qualitative outcomes and consider the applicability of this protocol in other patient groups.
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J Pain Symptom Manage · Jul 2021
ReviewAlternative Consent Models in pragmatic palliative care clinical trials.
Palliative care research raises a host of ethical concerns. Obtaining informed consent from seriously ill patients and their families is often perceived as an additional burden. Alternative approaches to traditional written informed consent reflect the changing nature of modern trial design, embracing real-world effectiveness and pragmatic clinical trials with those who are seriously ill. ⋯ We also present our experiences in an ongoing palliative care clinical trial, specifically using broadcast notification. Working with participants and regulatory oversight organizations, investigators can address the limits of traditional written informed consent and adopt innovative consent models to advance the science of palliative care. Research is now needed to determine the impact of these differing consent models on clinical trial recruitment, enrollment, and retention, as well as participants' informed understanding of their research participation using such models.
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All of us, without exception, must sooner or later face the inevitability of death. However, as comparative studies of different cultures show, the idea that death is something to be feared, denied or hidden away is far from universal. Undeniably, many people do not have a 'good' death, and those with a terminal illness experience suffering, pain, and even despair, a sense of dignity lost. ⋯ Witnessing the end-of-life can be a profound experience-what Kant would call the sublime-and it can unsettle, in a good way, anyone who comes to encounter it while unaware of its potential. My aim in this paper is to explain why I believe that the end of life in a palliative care context is an opportunity to experience the sublime and an authentic transformative experience. Finally, I describe four short stories to better understand what the experience of the sublime might be in the context of clinical practice.