[Show abstract][Hide abstract] ABSTRACT: Several key medical and oncologic professional societies have endorsed the importance of physician communication as a quality improvement metric. Despite this clear message, there remain substantial barriers to communication skills training (CST) in oncologic specialties. Herein, we describe the major barriers to communications training and propose standardized patient (SP) programs as efficient and strategic starting points and as expansion opportunities for new and existing CSTs.
Journal of Cancer Education 09/2014; 30(3). DOI:10.1007/s13187-014-0715-x · 1.23 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: An up-to-date summary of the literature on children's and adolescents' understanding of their own terminal illness and death.
Clinicians still find it difficult to speak with pediatric patients about death even though guidelines for facilitating communication on the topic exist. As a result, pediatric patients are less likely to develop a clear understanding of their illness and there is a disconnect between clinicians and parents about prognosis, even when clinicians have concluded there is no longer possibility for cure. Insufficient communication and poor understanding may increase the risk of patients feeling isolated, mistrustful and anxious, and deprive them of a role model who can communicate about painful issues or share difficult feelings. Despite these complexities, young people often show remarkable resiliency in the face of death and want to get the most out of the remaining time they have.
In addition to these most recent findings, this review examines the challenges in researching this topic, obstacles to patients receiving information about prognosis, and how physical symptoms affect patients' ability to develop an understanding. It also reviews sources of insight into pediatric patients' understanding including the development of concepts of death, fears about their own death, legal interpretations of what patients understand, and how terminally ill young people continue to treasure life. It concludes by addressing ways clinicians can use the knowledge we have to communicate well with dying children and adolescents and their families.
Current opinion in supportive and palliative care 01/2015; 9(1). DOI:10.1097/SPC.0000000000000118 · 1.66 Impact Factor
[Show abstract][Hide abstract] ABSTRACT: Research with children is necessary to assure more effective treatments and potential cures of childhood illnesses. Ethical conduct of research requires minimizing the inherent risks of research, especially when it involves vulnerable populations like children. DMD is a progressive and fatal disease with no FDA-approved treatment. Clinical trials investigating so-called “gene therapies” are viewed by many in the DMD community with great promise. The goal of research is to secure generalizable knowledge and not directly benefit patients, yet many parents of boys with DMD hope, and even expect, that their sons will derive medical benefit by participating in early-phase “gene therapy” trials, raising concern for the therapeutic misconception (TM). Physician-investigators must assist patient-subjects to distinguish realistic from unrealistic hope while maintaining reasonable expectations. In this article I examine the TM and related concepts as framed within the context of “gene therapy” for DMD.
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