If you have set up an advance health care directive or health care power of attorney, excellent. One of these should be included in every estate plan. They help ensure that decisions about your health care will be made according to your wishes even when you are unable to express those wishes.
Only about a third of Americans have completed these forms, however. That means that your healthcare decisions could be made by negotiations between medical professionals and your family, who may be unprepared. Moreover, the medical profession tends to lean toward providing treatment even when the situation is beyond hope or the person would be better served by palliative care.
If you leave your end-of-life care decisions up to your grieving family and a hospital, you simply can’t be sure your wishes will be followed. This is especially true in people with Alzheimer’s disease or another form of dementia — and advanced dementia is the sixth leading cause of death in the U.S. It’s the fifth leading cause of death for people over 65 and the third for people over 85.
Take dementia and Alzheimer’s seriously in your planning
You need to take the possibility of dementia seriously when planning for your future needs and end-of-life care. Once you’ve reached later stages of the disease, you could be completely unable to communicate your wishes — and your wishes may not be what your family might expect.
When considering the end of your life, what kind of treatment do you want? There are no right or wrong answers. They simply must be communicated to your family and memorialized in a health care directive or health care power of attorney.
If you reach the terminal stages of Alzheimer’s or dementia, do you want doctors to continue giving you treatment that will prolong your life? Many people do not, but doctors will be inclined to do so.
What about food and water? It’s unlikely that you will be given a feeding tube, but caregivers will continue to feed you as long as you retain the ability to open your mouth for a spoon. Unfortunately, that ability is a primitive reflex and often continues after you have lost the ability to swallow. Being fed when you’re unable to swallow can cause choking or aspiration of the food or drink into your lungs, which can cause pneumonia and add to your misery.
At least one survey has found that only 10 percent of dying patients seek longevity as the purpose of their treatment. Ninety percent would prefer to receive only comfort care.
Do you want palliative care? This is intended not to try to cure you or prolong your life but merely to make you comfortable while you die.
Do you want food and water? At the end of your life, you may not benefit from — or even be harmed by — food and water.
Now is the time to decide
Perhaps the best gift you can give your grieving family at the end of your life is certainty about what you want. Tragically, Alzheimer’s and other forms of dementia can rob us of communication. Even if there is no dementia in your family — but especially if there is — now is the time to make your decisions, communicate them to your family, and make them enforceable through the proper estate planning documents.