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Should a dementia patient be able to refuse food and water?

Last year we reported on a case in Oregon where a husband was unable to force a nursing home to stop spoon feeding his wife who had advanced dementia, despite her written wishes not to be kept alive by artificial nutrition and hydration.  A judge sided with the nursing home, saying by law the nursing home had to provide three meals a day and to help with feeding if necessary.

Shortly after, the group End of Life Washington provided a form with instructions on when food or hydration should be provided or withheld to a patient who no longer had capacity to decide for herself. The form states that the person signing the form wants food and drink if accepted when it is offered. It goes on to set out several circumstances under which food and drink should not be provided, for example, if the person who signed the document appears indifferent to food, spits out food or fluids, or turns their head when offered food or drink.

Just last month, Kaiser Health News reported that End of Life Choices New York has published an “aggressive” new advance directive offering a patient with advanced dementia 2 options: Option A that allows “comfort feeding” if the patient allows it or enjoys it, or option B that forbids all food and drink even if the patient seems to accept it. The form provided is 6 pages long with the first 3 pages providing detailed instructions to the person signing the form.

Alzheimer’s is one of the most expensive diseases to treat, and the numbers are only getting higher. According to a recent report, Alzheimer’s disease will cost the U.S. $277 billion in 2018 and $1 trillion by 2050. Also in 2050, an estimated 14 million people will be diagnosed with the disease. The challenge of how people who are diagnosed with dementia will be able to afford care is one that elder law attorneys assist with routinely.

The conversation about how clients want their life prolonged if diagnosed with dementia is an important one. Taking the next step of writing down their wishes in an advanced directive is absolutely necessary so that caregivers, family and other medical providers are clear on what the person with dementia wants. However (and unfortunately), it is important to stress to clients that even if they put their wishes in writing, there is no guarantee that a facility or medical provider will honor those wishes.

Industry thought leader Judith Schwarz, PhD, of End of Life Choices New York, presented a uniquely written advance directive designed for those with an early stage of dementia who wish to limit assisted oral feedings once their dementia becomes advanced, and they lose decision making capacity and the ability to self-feed. Access the recorded course now. 

Early Dementia and End of Life Treatment Choices


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