Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits. This 6-month, prospective, randomized trial tested the effect of an intervention consisting of a face-to-face, structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia. A comparison group received only social contact via telephone. Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals, and provision of psychosocial support. Psychosocial support was also provided via telephone at three 2-month intervals. Family members participated in three telephone interviews: baseline, 3, and 6 months. Specific advance directives for persons with dementia were extracted from medical records. Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point, and they were more likely to have decided on medical options listed in residents' advance directives (Do Not Resuscitate, Intubate, Hospitalize) over time. Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia.
Keywords: advance directives; advanced dementia; end-of-life communication; treatment discussions.