Artificial Hydration and Nutrition in Advanced Alzheimer's
In my conversations with families of patients with Alzheimer's disease, they often have anxiety over withholding or withdrawing artificial hydration and nutrition. What should be done when a patient refuses to eat? What does this behavior mean? This article will help illustrate the importance of education in alleviating common family fears and in helping families learn to advocate for their loved one.
What happens when a patient stops receiving nutrition and hydration?
In this recent article on determining hospice eligibility for dementia patients, I refer to the Functional Assessment Staging (FAST) scale, which is used to determine dementia progression. Patients progressing through the various stages will ultimately reach the point when they refuse food and fluids. In addition to helping clinicians determine the progression of a patient's dementia, the FAST scale also helps us understand certain behaviors, such as refusing to eat, that patients exhibit. Let's look at the scale again:
*Levels 1"“5: Patient experiences increasing forgetfulness, inability to perform complex tasks, and needs assistance with dressing.
*Level 6: Patient needs help with bathing and toileting, and is unable to control bladder or bowels.
*Level 7: Patient experiences inability to form intelligent speech, inability to ambulate without assistance, and requires total care.
For clinicians, determining the etiology"”or cause"”of the problem should be paramount. Does the patient have difficulty chewing or swallowing due to the disease process? Does the patient pocket or spit out food or have problems with aspiration? Are there other medical problems developing such as infection or constipation? This detective work is necessary to determine whether the patient's loss of interest in food is caused by advanced depression or an inability to interpret the sensation of hunger.1
Families become very distressed when their loved one refuses to eat. Our instincts tell us to provide nutrition to people who are ill. Food is symbolic of life and of love and of caring. But when a patient reaches the final stages of dementia, the body can no longer metabolize food, and food can stay in the digestive tract, causing nausea and vomiting. Certain food (especially meat) may not taste or smell good and may be difficult to chew. This is an expected progression, usually seen in the final stage of the FAST. Ultimately, the patient may prefer only liquids, and then nothing at all. When the patient is nearing the end of life, allowing him or her to refuse food is one of the hardest decisions facing families and clinicians, but it is the kindest thing we can do.