Journal of pain and symptom management
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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.
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J Pain Symptom Manage · Jul 2021
Comparing the Palliative Care Needs of Patients Seen by Specialty Palliative Care Teams at Home Versus in Clinic.
Understanding the unique needs of patients seen in clinic versus at home can help palliative care (PC) teams choose how to maximize available resources. ⋯ Patients seen by PC teams at home had worse function and were more likely to be referred for care planning, while patients seen in clinic had more PC needs related to pain and symptom management. Despite these differences, both populations have significant PC needs that support routine assessment and require appropriately staffed interdisciplinary teams to address these needs.
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J Pain Symptom Manage · Jul 2021
Implementation of VA's Life Sustaining Treatment Decisions Initiative: Facilitators and Barriers to Early Implementation Across Seven VA Medical Centers.
In 2017, Veterans Health Administration (VHA) National Center for Ethics in Health Care began system-wide implementation of the Life-Sustaining Treatment Decisions Initiative (LSTDI). The LSTDI is a national VHA policy and practice to promote conducting goals of care conversations and documenting veterans' preferences for life-sustaining treatments (LSTs). ⋯ Although self-efficacy proved key to overcoming obstacles, degree of perceived workflow compatibility of the LSTDI policy, available resources, and leadership engagement must be adequate for successful implementation within the implementation time line. Without these components, successful implementation was hindered or delayed.