Artificial Hydration & Nutrition in Advanced Alzheimer's
Posted Aug 23 2008 3:20pm
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 pateints, 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.
Won’t Mom die if we don’t feed her?
Here is where education comes in. Families need to refocus on what is really
happening in advanced dementia. The Alzheimer’s Association provides wonderful
resources to help families cope with and understand the changes they observe,
particularly about eating. Providing adequate food and fluids during the various
stages can be especially challenging to the family and the caregiver. Offering
small meals that contain soft, sweet and cold foods seems to appeal to these
patients. Ultimately, the disease process itself leads to reduced food and fluid
intake partly due to declining perceptions of smell and taste, the inability
to feed oneself, and feelings of loss of control and depression. Further, patients
“may refuse to eat because of physiological or behavioral conditions,
or they do so because they are at the end of life.” 2
By the final stage, the patient will have lost the ability to perform almost
all activities of daily living. Eating is generally the last of the activities
to be lost. Swallowing difficulties may lead to aspiration pneumonia and culminate
in the patient being sent to the hospital. This is the time for the physician
to educate the family about why the patient is no longer eating, clarify the
disease progression and explain the burdens and benefits of starting artificial
nutrition and hydration. Generally, this is when the family and physician decide
on comfort care, and the physician makes a referral to hospice services. These
conversations are never easy, but the expertise that the hospice nurse can provide
is most beneficial to the family and other health care providers.
What is artificial hydration and nutrition (AHN)?
When I speak to families about the feeding alternatives they are considering,
I always emphasize that feeding a patient artificially is not the same as eating
and drinking is for the rest of us. Food is not chewed and liquids are not taken
from a glass. The patient’s ability to perceive hunger may have been lost.
Usually by this point, a swallow test has been administered and feeding the
patient has been determined to be high risk. I review with the family the rationale
for withholding the artificial route. We talk about the benefits and burdens,
and they consider what their loved one’s quality of life will be. If the
family is considering the insertion of a nasogastric tube, I caution them that
most nursing homes in our area will not accept patients with one because of
the continued risk of aspiration and excoriation of nasal mucosa. The other
choice is a PEG (percutaneous endoscopic gastrostomy) tube, which is surgically
implanted. Most people have never seen a nasogastric tube or a PEG tube, but
it’s critical to understand the risks and potential discomforts for the
patient before deciding on this course of action. Whatever method the family
decides on, one thing is certain: once AHN has been started, it is more emotionally
stressful to withdraw it, for both families and health care workers.
Why is an advance directive important?
AHN is a medical treatment, and as such, it can be refused. I have seen families
struggle to determine “what Mom would have wanted” when faced with
feeding dilemmas. Ideally, patients have stated, in advance, what care they
would and would not want in the event they are unable to speak for themselves.
Unfortunately, this is not always the case. In an article published in 2007