Dementia Advance Directive

About the Advance Directive for Receiving Oral Food and Fluids in Dementia

Introduction

An advance health care directive to avoid prolonging late-stage dementia has been developed by End of Life Choices New York. The Advance Directive for Receiving Oral Food and Fluids in the Event of Dementia was written with the help of physicians, palliative and hospice care experts, lawyers, and others with concerns about dementia care. This Advance Directive permits those who retain decision-making capacity to document specific choices about future assisted oral feeding in the event they develop an advanced stage of dementia. The Directive will be of use for those in the earliest stages of dementia as well as those who fear a future diagnosis due to a significant family history of the disease.

Growing Demand

EOLCNY has developed the advance directive in response to growing demand for clear language to address specific needs not adequately covered by health care proxies and living wills. The directive for receiving assisted oral feedings has two options:

  • Option A refuses all oral assisted feedings once the patient is in an advanced stage of dementia and the ability to self-feed and make decisions has been lost.
  • Option B permits assisted oral feeding in advanced dementia but limits that provision to comfort-focused feeding that must be stopped when the patient becomes disinterested or unwilling to be fed.

The chosen feeding option would be implemented only when the appointed health care agent and primary care physician agree that the patient is now suffering from an “advanced” dementia, understood as Stages 6 or 7 (the last two stages) of the widely used Functional Assessment Staging Tool (FAST). When dementia becomes advanced, patients would be unable to feed themselves or make health care decisions. Without an advance directive, most individuals with advanced dementia are spoon fed, often for months or years. Only when patients begin to cough and aspirate liquids into their lungs are efforts to provide assisted oral feedings stopped. EOLCNY developed this advance directive to provide clear documentation that the patient decided, while still mentally capable, to refuse all life-prolonging measures, including assisted oral feedings, once their dementia became advanced.

Recommendation

EOLCNY recommends that this new advance directive be completed after a health care agent has been appointed who agrees to implement the chosen feeding option. This ‘dementia’ directive should be used to augment other advance directives in addition to the health care proxy, such as a Do Not Resuscitate order or, if appropriate, a MOLST form (Medical Orders for Life-Sustaining Treatment). EOLCNY strongly advises open discussion of these important decisions with a person's primary care physician, other medical care providers, their family attorney, loved ones, and all caregivers. Visit this page for additional specific directives.

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