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Background: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time. Methods: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child’s life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient. Results: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services. Conclusion: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.

Current challenges in medical practice, research, and administration demand physicians who are familiar with bioethics, health law, and health economics. Curriculum directors at American Association of Medical Colleges-affiliated medical schools were sent confidential surveys requesting the number of required hours of the above subjects and the years in which they were taught, as well as instructor names. The number of relevant publications since 1990 for each named instructor was assessed by a PubMed search. In sum, teaching in all three subjects combined comprises less than two percent of the total hours in the American medical curriculum, and most instructors have not recently published articles in the fields they teach. This suggests that medical schools should reevaluate their curricula and instructors in bioethics, health law, and health economics.

Desmoplastic small round cell tumor (DSCRT) is a rare malignancy most often seen in the abdomen or pelvis of young men. Unfortunately, this disease is usually metastatic at diagnosis and has dismal outcomes. We describe a case of isolated paratesticular DSCRT in a 14-year-old male successfully treated with surgical resection, chemotherapy, and adjuvant radiation, and we present a review of the relevant literature. It appears that isolated, paratesticular DSCRTs have a markedly better outcome than the classic abdominal or pelvic location. We hypothesize that this is due to earlier detection and the relative ease of surgical resection.

Autonomic symptomatology is prevalent in Parkinson's disease (PD) and impacts quality of life, yet little data exist on the presentation of autonomic dysregulation. This study measures orthostasis, constipation, and anosmia in 58 PD patients and 51 age-matched controls enrolled in the University of Florida's Movement Disorders Center. Patients had their blood pressure measured while seated and in standing position, performed the University of Pennsylvania Smell Identification Test (UPSIT), and completed a constipation survey. Our PD patients had a significantly different average decrease in systolic BP from a seated to standing position compared with their age-matched controls (5.90 mmHg (SD 17.03) vs. 2.6 mmHg (SD 11.28); p = .05). The difference in heart rate from seated to standing positions was not significant. Reflexive tachycardia was inversely proportional to levodopa equivalent daily dose (LEDD) score (p = .002). Anosmia occurred in 96.4% of the PD group and 49% of the controls (p < .001). Constipation was also more prevalent in the PD population than in the controls (67.3% vs. 21.6%; p < .001). Both anosmia and constipation were correlated with disease duration (p = .038 and .04 respectively). Our study suggests that increasing levels of dopaminergic therapy inhibits reflexive tachycardia. Furthermore, our study suggests that anosmia and constipation progress with the primary disease process.

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Rhinorrhea is more prevalent in PD patients compared to controls and it does not significantly impact performance on a smell test.

ETHICS CASE What's the Role of Autonomy in Patient-and Family-Centered Care When Patients and Family Members Don't Agree? Commentary by Laura Sedig, MD Dave's health is on the decline. Despite surgery, chemotherapy, radiation, and hormonal treatments, his prostate cancer has metastasized to his bones. When he's been in and out of the hospital for four months or visiting clinic for lab tests and treatments, he's often accompanied by his wife Jessica and one or both of his two children, Christine and Alex. Dave's family has remained optimistic, confident, and encouraging; they fully expected him to pursue aggressive treatment. Dave's physicians, however, now want to transition his care and incorporate hospice and palliative approaches to managing his illness.