It is well known that clinicians experience distress and grief in response to their patients' suffering. Oncologists and palliative care specialists are no exception since they commonly experience patient loss and are often affected by unprocessed grief. These emotions can compromise clinicians' personal well-being, since unexamined emotions may lead to burnout, moral distress, compassion fatigue, and poor clinical decisions which adversely affect patient care. One approach to mitigate this harm is self-care, defined as a cadre of activities performed independently by an individual to promote and maintain personal well-being throughout life. This article emphasizes the importance of having a self-care and self-awareness plan when caring for patients with life-limiting cancer and discusses validated methods to increase self-care, enhance self-awareness and improve patient care.
Loneliness and social isolation are strongly associated with several adverse health outcomes in older persons including death and functional impairments. The strength of these associations has been compared with smoking. Accordingly, loneliness and isolation have significant public health implications. Despite the adverse impacts of loneliness and social isolation on quality of life, and their strong association with health outcomes, the evaluation of loneliness and isolation have not been integrated into medical care. The risks for loneliness may be of particular concern to persons with serious illness as patients and caregivers cope with the experience of loss, loss of independence, and increasing care needs. To date, there has been no uniform way of evaluating and documenting loneliness and social isolation as a part of a review of a patient's social determinants of health. This article provides a framework for healthcare systems, providers, and community members working with older adults to (1) understand loneliness, isolation, and its counterpart social connection; (2) describe the different ways loneliness affects health; and (3) create a framework for asking about and documenting these experiences. Finally, because the lack of studies assessing whether targeting loneliness can improve health outcomes is a major gap, we provide guidance on the future of interventions. J Am Geriatr Soc 67:657–662, 2019.
ClinicalTrials.gov Identifier: NCT02966509.
Kappa coefficients are measures of correlation between categorical variables often used as reliability or validity coefficients. We recapitulate development and definitions of the K (categories) by M (ratings) kappas (K x M), discuss what they are well- or ill-designed to do, and summarize where kappas now stand with regard to their application in medical research. The 2 x M(M>/=2) intraclass kappa seems the ideal measure of binary reliability; a 2 x 2 weighted kappa is an excellent choice, though not a unique one, as a validity measure. For both the intraclass and weighted kappas, we address continuing problems with kappas. There are serious problems with using the K x M intraclass (K>2) or the various K x M weighted kappas for K>2 or M>2 in any context, either because they convey incomplete and possibly misleading information, or because other approaches are preferable to their use. We illustrate the use of the recommended kappas with applications in medical research.
ObjectiveThough most patients wish to discuss end-of-life (EOL) issues, doctors are reluctant to conduct end-of-life conversations. Little is known about the barriers doctors face in conducting effective EOL conversations with diverse patients. This mixed methods study was undertaken to empirically identify barriers faced by doctors (if any) in conducting effective EOL conversations with diverse patients and to determine if the doctors’ age, gender, ethnicity and medical sub-specialty influenced the barriers reported.DesignMixed-methods study of multi-specialty doctors caring for diverse, seriously ill patients in two large academic medical centers at the end of the training; data were collected from 2010 to 2012.OutcomesDoctor-reported barriers to EOL conversations with diverse patients.Results1040 of 1234 potential subjects (84.3%) participated. 29 participants were designated as the development cohort for coding and grounded theory analyses to identify primary barriers. The codes were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort (n= 996 doctors). Qualitative responses from the validation cohort were coded and analyzed using quantitative methods. Only 0.01 % doctors reported no barriers to conducting EOL conversations with patients. 99.99% doctors reported barriers with 85.7% finding it very challenging to conduct EOL conversations with all patients and especially so with patients whose ethnicity was different than their own. Asian-American doctors reported the most struggles (91.3%), followed by African Americans (85.3%), Caucasians (83.5%) and Hispanic Americans (79.3%) in conducting EOL conversations with their patients. The biggest doctor-reported barriers to effective EOL conversations are (i) language and medical interpretation issues, (ii) patient/family religio-spiritual beliefs about death and dying, (iii) doctors’ ignorance of patients’ cultural beliefs, values and practices, (iv) patient/family's cultural differences in truth handling and decision making, (v) patients’ limited health literacy and (vi) patients’ mistrust of doctors and the health care system. The doctors' ethnicity (Chi-Square = 12.77, DF = 4, p = 0.0125) and medical subspecialty (Chi-Square = 19.33, DF = 10, p =0.036) influenced their reported barriers. Friedman’s test used to examine participants relative ranking of the barriers across sub-groups identified significant differences by age group (F statistic = 303.5, DF = 5, p < 0.0001) and medical sub-specialty (F statistic =163.7, DF = 5, p < 0.0001).Conclusions and RelevanceDoctors report struggles with conducting effective EOL conversations with all patients and especially with those whose ethnicity is different from their own. It is vital to identify strategies to mitigate barriers doctors encounter in conducting effective EOL conversations with seriously ill patients and their families.
Objective: The study objective was to empirically identify barriers reported by multiethnic patients and families in receiving high-quality end-of-life care (EOLC). Methods: This cross-sectional, mixed-methods study in Burmese, English, Hindi, Mandarin, Tagalog, Spanish, and Vietnamese was held in multiethnic community centers in five California cities. Data were collected in 2013-2014. A snowball sampling technique was used to accrue 387 participants-261 women, 126 men, 133 Caucasian, 204 Asian Americans, 44 African Americans, and 6 Hispanic Americans. Measured were multiethnic patient-reported barriers to high-quality EOLC. A development cohort (72 participants) of responses was analyzed qualitatively using grounded theory to identify the six key barriers to high-quality EOLC. A new validation cohort (315 participants) of responses was transcribed, translated, and back-translated for verification. The codes were validated by analyses of responses from 50 randomly drawn subjects from the validation cohort. All the 315 validation cohort transcripts were coded for presence or absence of the six barriers. Results: In the validation cohort, 60.6% reported barriers to receiving high-quality EOLC for persons in their culture/ethnicity. Primary patient-reported barriers were (1) finance/health insurance barriers, (2) doctor behaviors, (3) communication chasm between doctors and patients, (4) family beliefs/behaviors, (5) health system barriers, and (6) cultural/religious barriers. Age (v 2 = 9.15, DF = 1, p = 0.003); gender (v 2 = 6.605, DF = 1, p = 0.01); and marital status (v 2 = 16.11 DF = 3, p = 0.001) were associated with reporting barriers; and women <80 years were most likely to report barriers to receiving high-quality EOLC. Individual responses of reported barriers were analyzed and only the participant's level of education (Friedman statistic = 2.16, DF = 10, p = 0.02) significantly influenced choices. Conclusion: Multiethnic patients report that high-quality EOLC is important to them; but unfortunately, a majority state that they have encountered barriers to receiving such care. Efforts must be made to rapidly improve access to culturally competent EOLC for diverse populations.
Introduction: Cancer is a leading cause of death in the United States. Although treatments have improved, patients and caregivers continue to report significant gaps in their care. The objective of this study was to examine the views of patients and caregivers on their experiences with current cancer care delivery and identify key strategies to improve the delivery of care. Methods and Materials: Semistructured interviews were conducted with 75 patients and 45 caregivers across the United States. The interviews were recorded, transcribed, and analyzed using constant comparative method of qualitative analysis. Results: Participants reported multiple gaps in care delivery, including barriers in health communication with health care providers, lack of elucidation of care goals, lack of care coordination, and challenges in accessing care. Participants identified that greater use of nonphysician providers and alternative formats, such as telephone-based care and home and community-based care, would narrow these gaps. Conclusion: Understanding patients’ and caregivers’ experiences with gaps in cancer care delivery can inform cancer care delivery redesign efforts and lead to targeted interventions that result in patient-centered and family-oriented care.
The p-DCT is a simple, rank order card-sort tool that may help clinicians identify patients' perceptions of key factors influencing the preservation of their dignity in the last chapter of life.
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