Planning end-of-life care for patients with dementia: Roles of families and health professionals

We examined families' end-of-life decision making and their interactions wi th health professionals. Twenty-eight family members of institutionalized d ementia patients participated in four focus groups. We found that participa ting family members were not well prepared for their decision-making roles, and that they: 1) experienced substantial burdens and loss in caring for i nstitutionalized eiders; 2) had limited understanding of the natural progre ssion of dementing conditions; 3) were uncomfortable in setting goals for t heir relatives' end-of-life care; 4) had little experience with death, and were ambivalent about the anticipated death of their relative; and (5) repo rted that they had little substantive communication with health professiona ls regarding end-of-life care planning. We concluded that many of the needs of such families could be addressed through improved application of the pr inciples of advance care planning, including regular structured discussions , involvement of surrogate decision-makers, and anticipation of clinical de cisions. Health professionals should take the lead in 'normalizing' the dis cussion of death.