Journal of pain and symptom management
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J Pain Symptom Manage · Jul 2021
Family caregiver perspectives on suffering of persons with severe dementia: A qualitative study.
Dementia involves suffering. Assessing the experience of suffering among persons with severe dementia is instrumental to delivering quality end-of-life care to them and their caregivers. ⋯ Findings suggest that suffering among persons with severe dementia can occur independent of physical symptoms and requires provision of person-centered care. The study adds to the understanding of end-of-life care in persons with severe dementia and their caregivers.
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J Pain Symptom Manage · Jul 2021
Health care professionals' experiences with pre-loss care in pediatrics; goals, strategies, obstacles and facilitators.
Although parents experience grief when confronted with their child's deterioration and imminent death, most bereavement care is focused on supporting parents after child loss. Insight into intentions and strategies of the health care professionals (HCPs) in preloss care during the end of life is still lacking. ⋯ HCPs strive to improve parental coping after the child's death, yet apply strategies that positively influence parental preparedness and well-being during the end of life as well. Individual HCPs are left with many uncertainties. A more robust approach based on theory, evidence, and training is needed to improve preloss care in pediatrics.
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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.
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J Pain Symptom Manage · Jul 2021
Children at the Intersection of Pediatric Palliative Care and Child Maltreatment: A Vulnerable and Understudied Population.
Concerns for child maltreatment can complicate the provision of pediatric palliative care (PPC). Little is known about the vulnerable population of children with life-threatening conditions involved with PPC and state Child Protective Services (CPS) or hospital Child Protection Teams (CPTs). More information is needed to inform and optimize collaborative care. ⋯ PPC practitioners regularly encounter children with CPS/CPT involvement. PPC practitioners should be aware of the risk of maltreatment in their patients. Although rare in the general pediatric population, medical neglect is a relatively frequent maltreatment concern in children cared for by PPC. PPC practitioners have an opportunity to aid in proper evaluation of medical neglect in children they care for. Closer PPC collaboration with CPS/CPT may further optimize care.