Aliza Baron

Ethics reporting in publications about research with Alzheimer's disease patients.

Persons with impaired decision‐making capacity require special ethical protections during recruitment for and participation in research. To assess how fully basic protections for these persons were reported in the literature, the first structured review of a sample of reports of trials including Alzheimers subjects was performed in 62 journals between January 1992 and December 1998. Neither institutional review board review nor informed consent was mentioned in 28% of the studies. In 48% of the studies, there was no mention of subject involvement in the consent process or that any potential subjects refused or withdrew. Protections may have been offered and simply not reported in the journal articles. The critical importance of these protections would be demonstrated if editors required that authors provide full documentation of ethical protections when submitting an article for review. These might be briefly reported in the articles but be made available electronically to interested readers. Authors could then specify in detail how they conducted their research involving persons with diminished decision‐making capacity.

Are the rules for research with subjects with dementia changing? Views from the field

Deliberative bodies have recommended additional protections for persons with dementia included in clinical trials. This survey of experienced dementia researchers revealed that 45 to 64% considered that specific ones of these recommendations would increase subject protection, and 40 to 86% considered they would make research less feasible. The real tradeoff between protection and difficulty in conducting research on devastating illnesses needs to be confronted when new regulations in this area are debated.

Compassion Fatigue Among Palliative Care Clinicians: Findings on Personality Factors and Years of Service:

Objectives: Palliative medicine is a rewarding field, but providers encounter patient trauma on a routine basis. Compassion fatigue, marked by burnout, secondary traumatic stress, and low satisfaction may result. However, professionals differ markedly in how they respond to patient trauma. The objective of the current study was to determine whether personality traits of neuroticism and agreeableness relate to aspects of compassion fatigue, after accounting for time spent working in the field. Methods: Sixty-six palliative medicine physicians, nurses, social workers, and chaplains completed validated measures of personality traits, compassion fatigue, and work background. Results: Providers who had worked longer reported higher levels of satisfaction and lower levels of burnout. Neuroticism demonstrated strong significant associations with secondary traumatic stress and burnout (Ps < .001). Agreeableness was significantly and strongly associated with compassion satisfaction (P < .001). These associations held after accounting for years spent working in the field. Significance of Results: Personality traits of neuroticism and agreeableness may convey risk and resilience, respectively, for palliative care professionals. More research is needed to determine if assessing personality traits can help identify providers at risk for adverse reactions to patient trauma.

Palliative Workforce Development and a Regional Training Program

Aims: Our primary aims were to assess growth in the local hospital based workforce, changes in the composition of the workforce and use of an interdisciplinary team, and sources of support for palliative medicine teams in hospitals participating in a regional palliative training program in Chicago. Methods: PC program directors and administrators at 16 sites were sent an electronic survey on institutional and PC program characteristics such as: hospital type, number of beds, PC staffing composition, PC programs offered, start-up years, PC service utilization and sources of financial support for fiscal years 2012 and 2014. Results: The median number of consultations reported for existing programs in 2012 was 345 (IQR 109 – 2168) compared with 840 (IQR 320 – 4268) in 2014. At the same time there were small increases in the overall team size from a median of 3.2 full time equivalent positions (FTE) in 2012 to 3.3 FTE in 2013, with a median increase of 0.4 (IQR 0-1.0). Discharge to hospice was more common than deaths in the acute care setting in hospitals with palliative medicine teams that included both social workers and advanced practice nurses (p < .0001). Conclusions: Given the shortage of palliative medicine specialist providers more emphasis should be placed on training other clinicians to provide primary level palliative care while addressing the need to hire sufficient workforce to care for seriously ill patients.