A Guide for Dementia: Communicating Feeding and Other Wishes

Many of us have experienced the pain caused by Alzheimer’s and dementia. In the final stages of these cognitive diseases, the individual may no longer speak, recognize loved ones, or move purposefully. Not everyone has a plan for dementia and Alzheimer’s.

It is crucial to have conversations and a plan for end-of-life care.

When quality of life declines, many choose to stop hand-feeding and hydration and allow the dying process to begin. Suppose the person no longer has an effective way to be heard. In that case, institutions, where such people are usually confined, are legally and morally obligated to continue hand-feeding and hydration until the bitter end. But does this go against the wishes of the patient?

Wishes may not be heard

Most Advance Health Care Directives (medical powers of attorney) usually only rule out artificial nutrition and hydration, like feeding tubes and IVs. Until recently, the documents did not include hand-feeding. 

Despite the person’s healthcare agent requesting otherwise, caregivers continue cajoling, persuading, and insisting that the person continue to be fed by hand. This process would rely on a primitive reflex in which touching the spoon to the corner of the person’s mouth would result in an involuntary opening of the mouth. 

The involuntary action can be misinterpreted as a desire to eat. The sad situation could drag on and on without a way to intervene. 

In especially tragic cases, where the person’s swallowing reflex has diminished, the person could aspirate food and fluid into the lungs, resulting in pneumonia.

How to uphold one’s wishes an plan for dementia

The Advance Health Care Directives that I now prepare include an additional document called a “Voluntary Advance Directive for Receiving Oral Feedings and Fluids in the Event of Dementia.”

Pioneering efforts by End of Life Washington, and End of Life Choices in New York, created a new document. This document supplements existing healthcare directives and specifically address this issue. 

The new document addresses decisions relating to:

  1. An individual is unable to feed themselves or use a toilet.
  2. An individual can no longer move, speak or recognize loved ones.

This supplemental document could express that feeding is to be stopped – or that feeding is restricted only to foods that the person demonstrably enjoys. 

The document further requests that the person be kept comfortable and out of pain through careful medication and other measures to relieve anxiety, agitation, or insomnia. I recommend this when a dementia diagnosis is made and while the person still can make and communicate healthcare decisions.

A Voluntary Advance Directive for Receiving Oral Feedings and Fluids in the Event of Dementia must be considered to ensure one’s wishes are executed.

Creating a video expressing these wishes is also an excellent idea. That way, when the person has become silent and immobile in bed, caregivers can see the person as they used to be, expressing wishes while the person was still able to communicate with them.

I hope you found this article helpful. Please give me a call if you would like to talk about your wishes and how to create a Voluntary Advance Directive for Receiving Oral Feedings and Fluids in the Event of Dementia reflecting those wishes. Don’t hesitate to contact us today at 877-585-1885 to schedule a free consultation to discuss your legal matters.

Thanks for reading.

Christopher E. Botti, Esq., Certified Specialist in Estate Planning, Trust and Probate Law