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.
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*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
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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
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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.
1The Education for Physicians on End-of-Life (EPEC) Project, Feeding decisions in advanced dementia, pp. 1–15, retrieved July 31, 2008.