Advance care planning: an american view

Decisions about whether to authorize potentially life-prolonging treatments for patients with dementia are amongst the most difficult choices facing families today. Typically, adult children who very much want to do the right thing for their parents feel conflicted: they are ambivalent about sustaining a dependent, regressed parent who bears little resemblance to the strong, independent figure they grew up with; they do not regard dementia as a terminal disease, analogous to advanced cancer, and thus feel obligated to authorize treatment; they would not want aggressive treatment if they...

Decisions about whether to authorize potentially life-prolonging treatments for patients with dementia are amongst the most difficult choices facing families today. Typically, adult children who very much want to do the right thing for their parents feel conflicted: they are ambivalent about sustaining a dependent, regressed parent who bears little resemblance to the strong, independent figure they grew up with; they do not regard dementia as a terminal disease, analogous to advanced cancer, and thus feel obligated to authorize treatment; they would not want aggressive treatment if they themselves had dementia, but recognize that their parent seems content despite her diminished state; they do not want to inflict painful tests and treatments on an uncomprehending older person, but realize they would not hesitate to expose their children to equally unpleasant but life-prolonging medical procedures. This chapter focuses on an under-utilized way to help family decision-makers: advance care planning. Systematic advance care planning — beginning when an older adult is cognitively intact, addressed again when the earliest symptoms of dementia appear, and then revisited with the surrogate at each stage of the illness — can avoid both under-treatment and over-treatment of the individual with dementia. It allows physicians to respect the patient's wishes and provides support to caregivers over the many years that the disease unfolds.