If you have an aging parent or loved one this is a MUST read for you! By now, many of us have witnessed the slow and dehumanizing death by Alzheimer’s of friends and loved ones. In the final stages of this and other dementia diseases, there comes a time when the person can no longer speak, recognize loved ones, or move purposefully.
With that poor quality of life, many would choose to stop hand-feeding and hydration, and to allow the dying process to begin. However, long before that time arrives, the person in question has lost the capacity to make and to express that decision. If the person no longer has an effective way to be heard, institutions where such people are usually confined are legally and morally obligated to continue hand-feeding and hydration until the bitter end.
That end can come years and years later. A terrible characteristic of such diseases is that people may have lost all that made them whom they once were and, yet, they remain physically healthy enough to continue, in that absent state, for many years.
Existing health-care powers of attorney usually only rule out artificial nutrition and hydration, like feeding tubes and IV. Until recently, the documents did not include hand-feeding. Thus, despite the person’s health-care agent requesting otherwise, caregivers would be required to 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. This could be misinterpreted as a desire to eat, and the sad situation could drag on and on without any way to intervene. I recently learned about a case where a retired nurse lingered on in a nursing home for an additional eighteen (18) years being “spoon fed” to sustain her life because a court ruling upheld the spoon feeding as basic care that could not be withheld . This apparently was not her wish but unfortunately, proper legal protections were not put into place before her incapacity.
In especially tragic cases, where the person’s swallowing reflex has become diminished, the person could aspirate food and fluid into the lungs, resulting in pneumonia. I recommend you visit our website elderlawcare.com to watch my video on how my dad ended up in a nursing home.
At our elder law firm we recently created a new legal document to supplement existing health-care directives and to specifically address the “spoon feeding” issue. Our clients now have the opportunity to state they do not want to be spoon fed if they are unable to feed themselves, can no longer use the toilet and can no longer move or speak or recognize loved ones. The document further requests that the person be kept comfortable and out of pain through careful medication and other measures to relieve any anxiety, agitation, or insomnia.
Especially when the dementia diagnosis is first made, and while the person still has the capacity to make and communicate health-care decisions, this supplemental health-care directive must be considered. Also, we recommend creating a video expressing our clients wishes because when a person has become only a silent immobile presence in bed, caregivers can see the person as he or she used to be, expressing wishes while the person was still able to communicate them.
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