Hospice Patients Alliance: Consumer Advocacy

Food, Nutrition, Artificial Feeding Methods,
Constipation & Other Considerations

Food & Metabolism

When appetite declines and your loved one is refusing food, it's quite difficult to accept. We all know that you have to eat to live, but what many of us don't know is that if your body can't process the food because of a terminal illness, forcing nutrition in will not prolong life. There is a natural process in the dying: decreased appetite, decreased thirst, gradual withdrawal from the concerns of this world and focus on concerns about death and taking care of "unfinished business" with family.

When the body's metabolism begins to shut down in the dying process, it no longer builds the body's tissues and organs; this is what's called an "anabolic" state of metabolism. When the body's tissues and organs begin to break down, whether or not nutrition is taken in, it's called a "catabolic" state of metabolism. In the catabolic state, food is not absorbed, tissues no longer heal well, infection is difficult to cure and an irreversible downward spiral is set into motion. Whether a patient eats food, is fed a liquid diet through a feeding tube, or gets intravenous nutrition ("total parenteral nutrition" or "TPN"), the nutrients taken in will not stop this catabolic process.

Constipation, Comfort & Lack of Appetite

Knowing when the catabolic state is reached is sometimes difficult to assess and is really a question for the Attending Physician. However, there can be some very important things to be done which can improve appetite in those who have not reached the catabolic state. In the terminally ill, and especially with those who are taking several medications (especially opioid narcotics for pain), constipation can become a serious and even life-threatening concern.

Constipation is a very common side-effect of narcotic pain medications such as morphine. That's why laxatives are commonly ordered at the same time a narcotic medication is started for pain. Constipation if left untreated can become a total blockage of the digestive tract or an "impaction." The minor discomfort many know as constipation, becomes a severe problem with possible extreme pain, gas, bloating, total lack of appetite, nausea and vomiting.

A complicating factor in determining the cause of the lack of appetite and abdominal pain may be the patient's reluctance to even discuss his or her bowel problems. It can be quite upsetting or embarrassing for some patients to admit to these types of problems. Bowel function is one of the "private" areas of our life which nobody relishes discussing. Some patients feel humiliated by their need to discuss or deal with these problems. Sensitivity on the part of the family and hospice staff can go a long way toward easing the patient's reticence.

Actually knowing how often the patient's bowels are moving and their nature is really important for patient comfort. This is one reason nurses pay a lot of attention to this area. It's not a question of prying into private matters. It's essential information needed by the nurse to accurately assess the patient and act accordingly. The nurse needs to know if the bowels are moving regularly every day, couple of days or longer? Are they soft or hard? Painful to pass? Is there much straining? What color are they? Does the patient have abdominal pain, gas or bloating? The answers to all of these questions and others tell the nurse and physician much and can help them help you deal with these problems. Many patients hide their problems with their bowels and will not readily discuss these areas. One may be thinking that the patient's lack of appetite signals the "end" when the patient may simply be severely constipated.

So before anyone concludes that a "catabolic" state of metabolism has set in, one has to make sure that there is no constipation or impaction involved. To prevent such complications, hospice standing orders include progressively stronger laxatives and "bowel programs" such as phosphate enemas and if necessary, mineral oil enemas. Hospice nurses are experts at resolving these sorts of problems which can be severely uncomfortable for their patients.

Simply taking a stool softener such as Colace (docusate) is not enough for those patients taking opioid pain medications. Stronger laxatives such as PeriColace (docusate + casanthranol) or Senokot (from Senna) are used in increasing dosages as necessary to keep the bowels moving. If the patient has not been able to prevent constipation from becoming serious, the nurse administers enemas, perhaps more than one day in a row, in order to clear out the blockage. Many nurses find that mineral oil is extremely effective in softening hardened stool in the large intestine and rectum. Because the large intestine cannot reabsorb the oil like it does with water in the bowels, the stool remains softened and can be removed with a simple flushing enema of warm water or phosphate. Patience is necessary, and sometimes, applying an oil enema and then waiting till the next day will allow for easy removal. A patient who has an impaction may find an abrupt approach much too painful for quick removal of hardened stool. The hospice nurse must work with and respect the patient's ability to tolerate the procedure.

It is quite common to find that a patient who had been severely constipated or impacted may regain their appetite, energy level, become more responsive and eat or drink much more than earlier. Adequate medication for bowel management is essential to patient comfort.

Artificial Methods of Feeding, Tube Feedings and IV Nutrition

Artificial methods of feeding a patient are some of the most controversial interventions available, along with other forms of prolonging or supporting life that would not continue without doing something to assist the patient. Patients who lose consciousness and slip into a coma cannot eat on their own; patients who have severe strokes with consequent injury to their brain function often cannot eat on their own and may have serious swallowing difficulties which make oral feeding "contraindicated"...the food, if given, may be taken down into their lungs and "aspirated." Anyone who cannot consciously swallow and also "protect their airway" (by making sure the food goes down into their stomach) is at risk for aspirating food into their lungs, causing a type of pneumonia called "aspiration pneumonia." For the terminally ill, adding a case of "aspiration pneumonia" to their difficulties may be the final stroke that takes them from us.

To avoid aspiration pneumonia, some patients or families, with their loved one's permission (hopefully) may request the doctor to place a feeding tube of one sort or another. Liquid nutritional formulas are given through these tubes and the patient is often not allowed to take any food or liquid by mouth/orally, in order to avoid aspirating the food or liquid into the lungs. Tubes that go into the stomach are "gastrostomy tubes" or "G-tubes." Tubes that are placed down the nose into the stomach are called "Nasogastric tubes" or "NG tubes." Tubes that are placed down the nose into the small intestine are called "NJ tubes," because they pass from the nose down into the jejunum, a section of the small intestine.

When the patient has a disease of one or more of the digestive organs which makes it impossible for the patient to digest food, the surgeon may place a central intravenous line ("IV") for the purpose of giving nutrition directly into the blood vessels. A patient who gets all of his or her nutrition through such a central line is getting "total parenteral nutrition" or "TPN" for short.

Other Considerations

Placement of feeding tubes into the stomach or small intestine is common in patients who have had a stroke or have an illness which interferes with swallowing, but who otherwise do not have a terminal illness. The fact that they are expected to live for an extended period of time "justifies" the placement of the artificial feeding tube to sustain their lives and aid in their recovery process.

If the patient has a terminal illness and needs a feeding tube because he is expected to live for a "reasonable" length of time and tube-feeding would not be unduly burdensome, surgeons will usually agree to place a feeding tube. What constitutes a "reasonable" length of time or an ?undue burden" are questions which medical ethicists struggle to answer and which families and patients must answer every day. The patient, the family or the patient-appointed decision-maker must be allowed to make the final decision.

In a case where the patient's death appears imminent (that is, the patient is expected to die within a few hours or days, not weeks or months), the patient or family must "wrestle" with the decision of whether or not to place a feeding tube to get nutrition into the patient when the patient can't swallow on his or her own. Placing a feeding tube into the actively dying patient would normally be considered inappropriate because the patient cannot absorb the nutrients and, therefore, giving food and fluids may harm the patient by adding to his discomfort or causing other physical problems.

A physician would most likely state that he or she could not "justify" placing a feeding tube in that situation. Many surgeons would refuse to place a feeding tube into the actively dying. Putting the patient through the trouble of the procedure would not bring results which would improve the patient's longevity or quality of life. Some health professionals might consider the placement of a feeding tube, at such a time, a form of cruelty.

However you may think about it, some family members argue bitterly over such decisions. That's one important reason for patients to fill out an Advance Directive for Healthcare appointing someone they trust to make decisions for them in the event they become unable to communicate their wishes. Some family members are unable to "let go" and ask for every possible medical intervention. Some health professionals may question whether the interventions are being performed for the welfare of the patient or to somehow make the family members feel better, less guilty, or more comfortable.

Medical social workers are experienced in assisting families to work through these types of decisions and should be utilized when family conflicts may interfere with the welfare or wishes of the patient. Beware, though, that a medical professional, a social worker or even a hospital chaplain may view patients who are very sick, disabled or elderly as ?better off dead? and, therefore, their advice may be biased in favor of hastening the patient's death.

Questions which need to be answered are: Will the procedure increase or decrease the patient's suffering? Is the procedure beneficial to the patient's overall well-being? What are the possible complications involved in the use of the procedure? What are the patient's own wishes regarding these types of medical interventions? Hospices do not usually institute measures which prolong life; rather, the hospice approach is to promote patient comfort and quality of life, which may indirectly prolong life, but which certainly increases the patient's "enjoyment" of any remaining time.

Although hospice is aimed at relieving symptoms and promoting patient comfort, a hospice patient always has the legal right to pursue any medical intervention he or she wishes. Whether or not the patient's insurance, Medicare or Medicaid will pay for such interventions is an important factor to take into consideration. Whether or not a physician will agree to such procedures is another question. If you have questions, it is important to speak with the hospice medical social worker who can provide answers and thereby assist you in making an informed decision. In some cases, the insurance, Medicare, or Medicaid will pay for certain procedures if the physician can "justify" the procedure from a medical point of view, that is, it is "reasonable and necessary" for the patient's welfare.

If it is found that the "hospice benefit" will not pay for certain procedures, it may be possible for the patient to "revoke" the hospice "benefit" in order to temporarily qualify for the regular medical coverage under Medicare or other insurance. After a procedure is done, the patient can then return to the hospice benefit by re-"electing" the hospice benefit. Although this may sound confusing or complicated, it is the hospice social worker who can help to make the necessary arrangements for the patient's welfare. Therefore, you should discuss these concerns with your medical social worker.

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