A New York end-of-life agency, named End Of Life Choices New York, has approved a new form of advance directive document that allows people to stipulate, in advance, that they don’t want food or water if they develop severe dementia. The new advance directive is called the “Advance Directive for Receiving Oral Food and Fluids in Dementia.”

Advance directives are legally recognized documents in which a person can specify the type of care to be provided if he or she becomes incapacitated, or otherwise unable to direct medical providers. The directives can confirm that a patient does not want to be resuscitated or kept on life support, such as a ventilator or feeding tube, if they have a terminal condition from which they are not likely to recover. However, the documents typically say nothing about withdrawing nutrition or hydration, i.e., food or water, when the person develops dementia.

The new advance directive offers two options: Option A directs “comfort feeding” only, which allows food and water to be provided if a patient appears to enjoy or allows it during the final stages of dementia — and Option B, which would halt all assisted eating and drinking. Under Option B, the New York advance directive 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.”

Both options would be invoked only when a patient is diagnosed with moderate or severe dementia, defined as Stages 6 or 7 as described in a widely used test known as the Functional Assessment Staging Tool (FAST). In Stages 6 or 7 of the FAST, patients are unable to feed themselves or make health care decisions.

Whether the new directive will be honored in New York — or anywhere else — is unclear. Advance directives which withdraw assisted feeding are prohibited in several states. Many care facilities may not cooperate.  Also, although doctors have a duty to honor patient wishes, they can refuse to do so if they have medical or moral qualms.

The new document advance directive document can be found here –

Download (PDF, 1.06MB)

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