Tuesday, April 3, 2018
Recently we wrote about a dementia advance directive and now, Kaiser Health News has a story about an ‘Aggressive’ New Advance Directive Would Let Dementia Patients Refuse Food. where "a New York end-of-life agency has approved a new document that lets people stipulate in advance that they don’t want food or water if they develop severe dementia. ...The directive, finalized [in March] by the board for End Of Life Choices New York, aims to provide patients a way to hasten death in late-stage dementia, if they choose.." The article explains that although dementia is a terminal condition, the medicaid aid-in-dying laws don't apply to someone with it. So instead, "[t]he document offers two options: one that requests “comfort feeding” — providing oral food and water if a patient appears to enjoy or allows it during the final stages of the disease — and one that would halt all assisted eating and drinking, even if a patient seems willing to accept it."
There was a significant amount of press coverage about whether an advance directive covers hand feeding as a result of a case out west where a patient with an advance directive was hand fed over her husband's objections. Typically the directives are silent about the provision of food and fluids by hand. Here, "[t]he New York directive, in contrast, offers option A, which allows refusal of all oral assisted feeding. Option B permits comfort-focused feeding.... [with] both options ... invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 of a widely used test known as the Functional Assessment Staging Tool (FAST). At those stages, patients would be unable to feed themselves or make health care decisions." This document is different than the one we reported on in our earlier blog post. As the article explains, "[t]he new form goes further than a similar dementia directive introduced last year by another group that supports aid-in-dying, End of Life Washington. That document says that a person with dementia who accepts food or drink should receive oral nourishment until he or she is unwilling or unable to do so... [while the] New York document says, 'My instructions are that I do NOT want to be fed by hand even if I appear to cooperate in being fed by opening my mouth.'"
Experts interviewed for the article expressed concerns about whether such instructions would be honored.