Advanced dementia is a life-defining illness affecting elderly persons; many of whom reside in nursing homes. With a final disease trajectory that typically involves difficulty swallowing, weight loss, and recurrent aspiration pneumonias, persons with advanced dementia are increasing receiving percutaneous endoscopic gastronomy tubes, despite evidence suggesting that they may not be an effective treatment for these individuals. There is a ten-fold difference across states and variation across nursing homes in the rate of feeding tubes (FT) use for this group of frail elders. Their use is higher in facilities which are larger, urban, for-profit and lacking special dementia care units. The role of informed preferences and decision-making about FT insertion is unclear, although several studies found that having a DNR order was negatively associated (at individual and facility level) with having a FT. Research is needed to better understand the determinants of the increasing use and facility variation in FT use, especially the role of policy, reimbursement, patient preferences and decision-making factors. This multi-method study will analyze administrative data from 50 states, along with structured and in-depth interviews with family members of decedents with advance dementia in 6 states to address the following specific aims: 1) Describe the natural history of FT use in nursing home residents with advanced dementia; 2) Examine individual, facility and market factors associated with the initial insertion of FTs; 3) Examine individual, facility, and market factors associated with the changing rates of FT use over time in US nursing homes; 4) Assess the role of shared decision making in 6 states with high and low rate of FT utilization; and 5) Examine bereaved family member perceptions and satisfaction with end of life care in geographic regions that vary in the use of FTs. Minimum Data Set, Medicare claims, and facility data from the On-Line Survey Certification of Automated Records will be merged into a residential history file to examine the pattern and predictors of initial FT insertion, re-insertion and removal and in longitudinal analyses. A survey of bereaved family members will examine perceptions, satisfaction with end-of-life care, and the process of decision making across geographic regions that vary in the use of feeding tubes. Knowledge gained will be used to inform public policy and formulate facility interventions to ensure that FT insertion in persons with severe cognitive impairment is ethically appropriate. ? ? ?
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