Artificial Hydration and Nutrition in Advanced Alzheimer's
As Alzheimer’s disease progresses, the patient’s ability to perform the activities of daily living declines. 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 life1.”
When a patient cannot eat normally, a medical treatment option is artificial hydration and nutrition (AHN). With AHN, a chemically balanced mix of nutrients and fluids, is provided to the patient by placing a tube directly into the stomach, the intestine or a vein. AHN provides the nutrition and fluids that the patient needs but does not offer the sensory rewards and comfort that come from the taste and texture of food and liquids. In addition, doctors and nurses, rather than patients themselves, control when and how much will be “eaten”. Finally, the social interaction that often accompanies eating and drinking is not present.
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 patients as the disease progresses but in the final stages, swallowing difficulties may lead to aspiration pneumonia if you try to feed the patient.
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. 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.
End of Life Decision Making
What then should be done when a patient refuses to eat? How can families advocate for their loved ones without the guilt and fear of making the wrong decisions? Clinicians look at the etiology—or cause—of the problem to arrive at their decision and so should you. 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.
Advance Directive Can Help
If the patient has made known his choice in an advance directive, the decision process is simplier – follow the wishes of the patient. 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.
Comfort in your decision
As with any medical treatment, tube feeding and hydration should be given if they contribute to the overall treatment goals for the patient. These treatment goals should always focus on the patient’s wishes and interests. If the goal is to keep the patient alive, then artificial nutrition and hydration may be essential treatment. But if the goal is to provide comfort care only, artificial nutrition and hydration usually is not appropriate and may actually add to the person’s discomfort.
Some individuals from personal or religious conviction may believe that nutrition and fluids always must be given no matter what the condition or prognosis, or how much the patient may be suffering. Because the provision of food and water can have enormous symbolic significance for some, it can have a powerful effect on decisions about the provision of artificial nutrition and hydration. If the symbolic importance exists for the patient, caregivers should respect the patient’s wishes to continue treatment. However, if the symbolic importance exists for the family and caregivers, but not necessarily for the patient, the decision to continue artificial nutrition and hydration may need closer examination.
Withdrawal of artificial nutrition and hydration does not lead to a long and painful death. For patients who are at the end of life, death normally occurs within 3 to 14 days after artificial nutrition and dehydration is stopped (the time varies depending on how debilitated the patient was when treatment was discontinued). Reports based on the observation of unconscious patients indicate that the process is quite peaceful, and no evidence exists that they are aware of the process. Conscious patients who are elderly or neurologically impaired usually will slip quickly into a coma (a sleep-like state that is inherently free of pain) and become similarly unaware.
Caregivers of the dying and patients themselves have reported that those who are near death are seldom hungry, and if feelings of hunger occur, small amounts of food by mouth are usually all the patient wants. The most common complaint is dry mouth, a condition that can be alleviated by sips of water, ice chips, and lubricants for the lips or other appropriate oral care. On rare occasions, patients may experience twitching or muscle spasms when hydration is withdrawn, but these symptoms can be managed easily with sedatives. Observed symptoms that sometimes occur, such as severe pain or nausea, are usually due to the disease itself and the use of artificial nutrition and hydration will not alleviate these symptoms but may even make them worse.
Some hospice workers have also observed that patients who are not tube fed seem more comfortable than those who are. Caregivers also have observed that symptoms such as nausea, vomiting, abdominal pain, incontinence, congestion, shortness of breath, among others, decreased when artificial nutrition and hydration were discontinued making the patient more comfortable.
For example, patients with pneumonia, one of the most common terminal events among the elderly or people with terminal illness, will not suffer as much from coughing or shortness of breath due to the excess mucous production if they are not receiving fluids. Medical observation has found no indications that patients who have suffered massive brain damage causing permanent unconsciousness experience any pain when artificial nutrition and hydration is stopped2.
Reports from conscious dying patients indicate that they increasingly experience a lack of appetite and thirst. In fact, it is common for competent hospice patients and those suffering acute illness to refuse food and water. Dry mouth is the only common reported symptoms, and this can be managed without resort to tubes.
There is also a benefit for pain management by not using artificial hydration and nutrition. The body produces natural pain relievers known as endorphins. When food is supplied through AHN, the body stops producing endorphins and the benefit of this natural pain relief is lost.
It is natural and humane
When a patient with Alzheimer’s disease is at the end-of-life stage and can no longer eat, deciding not to use artificial hydration and nutrition is the humane option. Families of patients deciding to go this route should have comfort in knowing that in the absence of an advance directive from the patient, they are making the humane decision.
- Tilly, J, Reed P, Eds., Dementia Care Practice Recommendations for Assisted Living Residences and Nursing Home—Phase 1: Food and Fluid Consumption,Chicago - Alzheimer’s Association, p. 9.
- The Education for Physicians on End-of-Life (EPEC) Project, Feeding decisions in advanced dementia, pp. 1–15, retrieved November 12, 2008.
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