5.

What is artificial nutrition and hydration?

Artificial nutrition and hydration is a form of life-sustaining treatment. It is a chemically-balanced mix of nutrients and fluids, provided by placing a tube directly into the stomach, the intestine or a vein.

When is it used?

Artificial nutrition and hydration is given to a person who for some reason cannon eat or drink enough to sustain life or health. Without nutrition and fluids a person will eventually die. Artificial nutrition and hydration is a medical treatment that allows health care providers to bypass whatever may be preventing a person from eating or drinking. It may be used for a variety of conditions. Short-term artificial nutrition and hydration often is given to patients recovering from surgery, greatly improving the healing process. It may also be given to people with increased nutritional requirements, such as burn victims, or to someone who cannot swallow because of an obstructing tumor. A highly sophisticated form of artificial nutrition and hydration (total parenteral nutrition or TPN) can be given indefinitely. For example, TPN can be given to patients with serious intestinal disorders that impair their ability to digest food, enabling them to live fairly normal lives. However, long-term artificial nutrition and hydration also is commonly given to people with irreversible neurological disorders, such as advanced Alzheimer's disease or severe stroke, although it cannot reverse the condition or change the course of the disease itself.

How is it given?

Artificial nutrition and hydration may be given in several ways. Usually it is provided through a flexible tube inserted through the nasal passage into the stomach (nasogastric or NG tube), through the wall of the abdomen into the stomach (gastrostomy, G tube or PEG) or into the intestine (jejunostomy). Insertion through the wall of the abdomen requires a minor surgical procedure. TPN requires the surgical insertion of a special catheter or port, usually into a vein below the collar bone. Fluid with limited amounts of nutrients (or fluids alone) can be supplied directly into a vein in the arm through an intravenous (IV) line. Nutrition and hydration may be supplied temporarily, until the person recovers the ability to eat and drink, or indefinitely. If artificial nutrition is likely to be given for a long time or permanently, a surgically implanted tube is generally more comfortable for the patient and has fewer side effects.

Are there side effects from artificial nutrition and hydration?

Yes. A number of side effects may occur, especially with the long-term use of artificial nutrition and hydration. Tubes can damage and erode the lining of the nasal passage, esophagus, stomach or intestine. If tube placement requires surgery, complications such as infection or bleeding may arise. Intravenous lines can become uncomfortable if the insertion site becomes infected or if fluid leaks into the skin causing inflammation or infection. Intravenous fluids must be given with extra care to frail patients in order to avoid fluid overload and serious breathing difficulties. TPN requires particular skill and care to ensure that dangerous infections do not enter the blood stream.

Many patients receiving artificial nutrition and hydration by NG or G-tube have brain disease and are unable to report that they feel full or unwell, so abdominal bloating, cramps or diarrhea may occur. Regurgitation is common, and the feed (the nutritional substance inserted through the tube) may be inhaled into the lungs causing pneumonia.

With careful attention by health care providers, many side effects can be avoided or managed fairly well. However, confused patients also can become anxious over a tube's presence and try to pull it out. This often leads to the use of restraints _ tying the patient's arms down or to sedation, which can have a serious effect on the patient's mental state and his ability to interact or to perform any small activities he might be capable of, such as changing position in bed.

Is artificial nutrition and hydration different from ordinary eating and drinking?

Yes. An obvious difference is that providing artificial nutrition and hydration requires technical skill. Professional skill and training is necessary to insert the tube and to make decisions about how much and what type of feed to give. Skilled management is also required to limit bad side effects.

Other important differences exist. Artificial nutrition and hydration does not offer the sensory rewards and comforts that come from the taste and texture of food and liquids. 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.

For patients at the end of life, providing artificial nutrition and hydration may prolong the dying process, without contributing to the patient's comfort. In fact, because of side effects, artificial nutrition and hydration may actually contribute to the dying patient's discomfort.

To some, these differences do not matter because the provision of any type of nourishment and fluids to a sick person is considered an important act of caring that overrides any differences between artificially supplied nutrition and hydration and the provision of ordinary food and water. To others, however, artificial nutrition and hydration is a medical treatment that is vastly different from ordinary eating and drinking. Because people can have such different views about artificial nutrition and hydration, it is important that individuals let others know their views.

Will the withdrawal of artificial nutrition and hydration lead to a long and painful death?

No. For patients who are at the end of life, death normally occurs within three to fourteen days after artificial nutrition and hydration 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, 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. Symptoms that sometimes occur, such as severe pain or nausea, are due to the disease itself. Supplying artificial nutrition and hydration will not alleviate these symptoms and may even make them worse.

Is there evidence that avoiding artificial nutrition and hydration contributes to a more comfortable death?

Yes. Much of this evidence is based on observations by those who have had a great deal of experience caring for the dying, such as hospice workers. They have noticed 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 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 stopped.

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 commonly reported symptom, and this can be managed without resort to tubes.

Animal studies indicate that the body responds to a lack of food by increasing the production of natural pain relievers (endorphins). However, if food is supplied, the body stops producing endorphins and the benefit of this natural pain relief is lost.

Artificial nutrition and hydration is largely a 20th century technology. Historically, coma was nature's way of relieving the suffering of the dying. However, the provision of artificial nutrition and hydration may prevent the development of this natural anesthesia in some cases.

Is it ever appropriate to give artificial nutrition and hydration to patients who are at the end of life?

Yes. As with any medical treatment, tube feeding and hydration should be given if they contribute to 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.

Is it better to refuse artificial nutrition but to continue hydration?

No. Continuing hydration alone does not necessarily contribute to comfort. It may contribute to discomfort by extending the dying process and delaying the development of a peaceful coma. In addition, continuing hydration may aggravate other symptoms such as cough or shortness of breath. Since patients' intake of fluids decreases substantially at the end of life, any sensation of thirst or dry mouth is generally easily managed by sips of water, ice chips and good oral care.

What does the law say about artificial nutrition and hydration?

Legally, artificial nutrition and hydration is considered a medical treatment that may be refused at the end of life. If the patient still has the capacity to make decisions, the patient can tell the physician what he or she wants. However, for patients who are too sick to communicate, certain states demand strong evidence that a patient would choose to refuse treatment before the state will permit treatment to be stopped.

Every state law allows individuals to refuse artificial nutrition and hydration through the use of an advance directive such as a living will or durable power of attorney for health care, which is used to appoint an agent or surrogate to speak for the patient. However, state laws vary as to what must be done to make wishes known. In many states nutrition and hydration is simply considered a medical treatment that may be refused in an advance directive. But in some states individuals are required to state specifically whether or not they would want artificial nutrition and hydration at the end of life. When uncertainty or conflict exists about whether or not a person would want the treatment, treatment usually will be continued.

Because caregivers own views may be very different from the patient's views, even if state law does not require it, it is wise for people to make their wishes about the use of artificial nutrition and hydration known in advance and to be sure that caregivers will honor them. Some states prohibit caregivers or agents from making decisions to stop the use of artificial nutrition and hydration unless they specifically know the patient's own wishes. Carefully read the instructions that come with the advance directives or contact Choice in Dying for information about the state's law.

Can artificial nutrition and hydration be stopped once it has been started?

Yes. As with any other medical treatment, to stop treatment it is both legally and ethically appropriate if treatment is of no benefit to the patient or is unwanted. In fact, the law requires that treatment be stopped if the patient does not want it. If it were not possible to stop treatment once started, patients could be denied treatment that might be helpful for fear it could not be stopped later.

In practice, however, caregivers often have a more difficult time stopping a treatment that has been started than simply not starting it. Stopping a treatment makes some caregivers feel as if they are in some way "killing" the patient. It is important for health caregivers, family members and surrogates to remember that it is the underlying disease that is causing death. The treatment is prolonging the dying process.

Conflicts about stopping artificial nutrition and hydration often arise because the patient's wishes are not clearly known or the patient has not designated an agent to make decisions for him. Some state laws also may create obstacles to stopping treatment. In situations of uncertainty, the usual fall-back position is to continue treatment. Conflicts also may occur because the patient's health care provider believes that it is never appropriate to stop or withhold artificial nutrition and hydration. It is important that individuals talk to their doctors and loved ones about wishes regarding the use of artificial nutrition and hydration at the end of life so that their wishes will be honored.

Can anything be done if the doctor insists on providing artificial nutrition and hydration?

Yes. If individuals have made their wishes known, the doctor must honor those wishes or transfer their care to another doctor who will honor them. To keep this kind of conflict from developing it is wise for people to talk with their physicians before a medical crisis arises, if possible, so they know their physician will honor their end-of-life choices.

Is it considered a suicide to refuse artificial nutrition and hydration?

No. When a person is refusing life-sustaining treatment at the end of life, including artificial nutrition and hydration, it is not considered an act of suicide. A person at the end of life is dying, not by choice, but because of a particular condition or disease. Continuing treatment may delay the moment of death but cannot alter the underlying condition.

Are life insurance policies affected if life sustaining treatments are refused?

No. Because death is not the result of a suicide, life insurance policies are not affected when medical treatments are stopped and the patient is permitted to die.

Does the medical community agree that it is ethically permissible to stop artificial nutrition and hydration?

Professional organizations such as the American Academy of Neurology, American Medical Association, American Nurses Association, American Thoracic Society and Society of Critical Care Medicine have affirmed through policy statements that artificial nutrition and hydration are medical treatments and their use should be evaluated in the same way that any other treatment would be. Other major organizations that have issued similar policy statements or treatment guidelines include the American Dietetic Association and the Alzheimer's Association. However, some doctors and nurses personally believe that it is never appropriate to withhold or stop artificial nutrition and hydration. It is therefore important that individuals discuss their wishes with their physician and confirm that their wishes will be honored.

Do all nursing homes and hospitals agree that it is permissible to stop artificial nutrition and hydration?

No. Some nursing homes and hospitals, for religious or other reasons, may have policies that would prevent them from honoring a patient's legal right to refuse treatment. Under the Federal law known as the Patient Self-Determination Act, health care facilities are required to let patients know at the time of admission if they have such policies, and what those policies are. If individuals can anticipate that they might someday receive treatment in a particular hospital or nursing home, or if a loved one is about to be admitted to a nursing home, they should find out what the institution's policy is in advance. Although facilities that have such policies generally are required to transfer a patient to a facility that will honor the patient's wishes, practically speaking, it can be extremely difficult to arrange transfer to another facility for the sole purpose of honoring a patient's refusal of treatment.

Some points to think about when making decisions about the use of artificial nutrition and hydration:

1. What are the patient's wishes? What quality of life is important to the patient?
2. What is the goal or purpose for providing artificial nutrition and hydration? Will it prolong the patient's life? Will it bring about a cure or arrest the disease? Will it maintain an acceptable quality of life for the patient? Will it contribute to the patient's comfort?
3. Does the patient have religious, cultural or personal values that would affect a decision to continue or stop treatment?
4. Are there any benefits that artificial nutrition and hydration offer this patient?
5. What burdens will artificial nutrition and hydration create?
6. Are there issues such as depression, inability to let go, guilt, unresolved issues from the past, unfinished business affecting the decision-making process of the patient, the surrogate decision maker or the health care provider?
7. Does the state law affect the decision to stop treatment?

Conclusion

Watching someone we love die makes us feel powerless. But even when "nothing can be done" to cure the disease, there is a great deal that can be done to make the person's last days comfortable and even productive and meaningful. As we broaden our understanding of providing care to the dying, we are improving the management of pain and other symptoms. Through the exceptional work of the hospice movement, we have come to recognize that care of the dying requires medical expertise and a collaborative approach among all of a patient's caregivers. This collaboration allows caregivers to consider the total needs of the patient. Because of the powerful symbolism that associates the provision of food and water with caring, we as caregivers (family and professional), may be uncomfortable about withholding artificial nutrition and hydration. It is important to remember that when we are entrusted with decisions about the care of the dying, the patient's comfort and wishes must guide our decision-making, not our own.

By permission, of Choice In Dying, Inc. (1996) 

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