Journal of palliative medicine
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Background: Racial and ethnic disparities are well-documented in health care but generally understudied in palliative care. Objective: The goal of this mixed-methods study was to examine differences in patient experiences by race/ethnicity in palliative care and to qualitatively explore minoritized patient experiences with care for a serious illness. The data for this study were collected as part of a larger national effort to develop quality measures for outpatient palliative care. ⋯ The majority of Black patients and White patients (78.7% vs. 79.1%, p = 0.33) felt that they had received as much help for their pain as they wanted. Interviews with patient and family caregivers revealed positive experiences with palliative care but demonstrated experiences of discrimination in health care before referral to palliative care. Conclusion: Future work is needed to understand nuances around minoritized patient experiences with palliative care and receiving pain and symptom management.
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Background: Different sets of barriers have been identified to explain the difficulties in the access and availability of opioid analgesics in palliative care, particularly in low- and middle-income countries, including Latin America. Objective: To validate a structured questionnaire for the access to opioid medicines and to investigate the perception of health professionals regarding access barriers to opioid analgesics in 17 countries of the Latin American Region. Design: Survey to identify the domains and barriers of access to opioid medicines according to health professionals, including physicians, nurses, and pharmacists affiliated to institutions that provide palliative care in Latin America between August 2019 and October 2020. ⋯ The median age was 44 years old (ranging from 23 to 73 years) with an average experience in palliative care of 10 years (range: 1-35), 71.8% were women, and 49.8% were affiliated to specialized health care facilities of urban areas (94.6%). The main barriers perceived to be extremely relevant by the respondents were "belief that patients can develop addiction" and "financial limitations of patients" for the patient's domain and the "appropriate education, instruction, and training of professionals" for health professional's domain. Conclusions: It is necessary to develop strategies to strengthen less-developed health systems of the region to review legal frameworks, ensure integrated palliative care systems, and deploy multidisciplinary strategies for sensitizing, training, and raising the awareness of patients, caregivers and, particularly, health professionals regarding appropriate prescription and rational use of opioid analgesics.
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Background: There is limited evidence regarding the challenges of providing hospice care to those dying at home during the COVID-19 pandemic. Objective: To describe the challenges of home hospice care and the specific types of disruptions in care processes experienced by patients and families. ⋯ Results: We identified six domains of disruptions in home hospice care: delayed hospice enrollment, inability to conduct home visits, lack of needed supplies, communication failures, strained caregivers, and limitations of telehealth. Conclusions: This study provides a critical first analysis of disruptions in home hospice care that can feasibly be addressed and must be prioritized by hospices throughout the ongoing pandemic and in advance of future emergencies.
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Background: The importance of dignity in health care is well described, yet limited interventions exist to improve dignity, particularly patient-driven interventions. Objectives: To test the hypothesis that patient-selected photographs at the bedside would impact patients' sense of dignity and clinicians' sense of meaningful work, stimulate conversation between patients and clinicians, and serve as a visual and patient-driven complement to the Patient Dignity Question (PDQ). Methods: Patients admitted to three units at an academic medical center displayed photographs above their head of bed and were interviewed for this study. ⋯ Notably, analysis of the clinician surveys (n = 40) yielded six similar themes: conveying goals, joy, stimulating conversation and meaningful connections, humanizing the patient, meaningful work, and compassion and empathy. Conclusions: Patient-selected photographs at the bedside impact both patients and clinicians by stimulating conversation and meaningful connections, humanizing patients, and fostering meaning and joy in work. Photographs and the PDQ provide a similar window into personhood, thereby supporting the use of a photograph as a visual and patient-driven complement to the PDQ.
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Patients receiving palliative care (PC) can present with or develop a host of urological needs or complications. These needs can include attention to sexual health, urinary incontinence, genitourinary bleeding, and urinary tract obstruction by benign, malignant, or urinary stone diseases. These varied conditions require that PC clinicians understand invasive and noninvasive medical, surgical, and radiation options for treatment. This article, written by a team of urologists, geriatricians, and PC specialists, offers information and guidance to PC teams in an accessible "Top Ten Tips" format to increase comfort with and skills around assessment, evaluation, and specialist referral for urological conditions common in the PC setting.