Artificial Hydration & 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 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

in the Journal of the American Medical Association, the author states:

“Advance care planning plays a critical role in feeding decisions. The

lack of advance directives is a consistent risk factor associated with feeding

tube insertion in dementia. Clinicians have an opportunity to prepare patients

with early disease and their families about what to expect in the later stages

of dementia, including eating problems.” ³

In the absence of an advance directive, clinicians must advocate for the patient.

What is in the patient’s best interest? Are we prolonging life, or prolonging

death and suffering? Although emotionally charged, these conversations are highly

beneficial, and crucial, for families who are struggling to find some

balance.

Families of patients with advanced dementias need education from clinicians

when the desire to eat stops. As clinicians, we need to discuss, in clear terms,

the etiology of the disease process and the expected progression. We are the

trusted professionals. Together we can provide the guidance, the support, and

the continuity of care (regardless of the decision) that our patients and families

deserve.

Celebrating Life!

Audrey Wuerl