CHAPTER 6. SUFFERING FROM PHYSICAL SYMPTOMS OTHER THAN PAIN

6.01 Physical Symptoms Other than Pain; In General

6.02 Symptoms Related to Digestion

A. Nausea and Vomiting

B. Constipation

C. Diarrhea

D. Loss of Appetite and Weight Loss

E. Trouble Swallowing

F. Dry Mouth

G. Nutrition and Hydration

6.03 Problems with Breathing and the Lungs

A. Shortness of Breath

B. Cough

C. Hiccough

D. Secretions

6.04 Neurologic Problems

A. Insomnia

B. Confusion, Delirium and Dementia

C. Terminal Restlessness

D. Seizures

E. Headache

6.05 Conditions of the Skin

A. Itching

B. Bedsores

C. Edema

D. Odors

6.06 Bladder Problems

6.07 Weakness and Other General Symptoms

6.01 Physical Symptoms Other than Pain; In General

Most physical symptoms in the terminally ill can be treated quite successful, although many pose more difficulties in management than pain. This chapter discusses some of the more common symptoms experienced by patients with terminal disease and what can be done to help. In many cases, successful therapy will depend on careful reporting of observers to a health care provider in order to allow appropriate adjustments of drug therapy. In other cases, suggested efforts by family members alone are likely to be at least as helpful as physician initiated interventions.

In treating physical symptoms of the terminally ill certain common factors are likely to be relevant:

(1) symptoms may be caused by drugs originally given for symptoms which no longer exist and should therefore be stopped;

(2) many suggested therapeutic approaches for one symptom may not be appropriate because of other existing problems, and (3) coexisting symptoms can frequently be effectively treated with the same medications or in the same manner. For example, many, but not all medications for nausea, are also helpful in the relief of anxiety and itching.

[Note: In the following text you will frequently see a reference to a group of drugs collectively called "steroids." These drugs are all chemically similar and closely related to the naturally occurring human hormone produced by the adrenal glands, named hydrocortisone. In general, these chemicals serve to decrease the bodyís reaction to potential irritants of many kinds, making them useful in many different situations. Because they differ somewhat from each other, specific steroids tend to be used in slightly different situations -- but there is great overlap. Some of the commonly used steroids with names you might recognize besides hydrocortisone itself are cortisone, prednisone, prednisolone, triamcinolone (Aristocort), Celestone, Medrol, and dexamethosone (Decadron).]

Although many medications are mentioned below, it is not the intent of the author to make the reader an expert in their use. The intent is to inform the reader as to when drug therapy is likely to be effective and when other modalities are likely to be more successful or additive in the relief of symptoms. When drug names are used, the generic name is written uncapitalized and common Tradename(s) Capitalized.

6.02 Symptoms Related to Digestion

Symptoms related to the digestive tract are among the most frequently observed in terminally ill patients. They are commonly caused by problems with medication or to general effects of the terminal disease process, but may be related to more defined problems which require specific interventions, like a tumor pressing on an important structure in the abdomen.

A. Nausea and Vomiting

Nausea with or without vomiting is the most common digestive symptom and, after pain, the second most common symptom in terminally ill patients. Frequently it is caused by pain medications, both narcotic and non-narcotic, and can be relieved by changing the drug or dosage being used. Other drugs which frequently cause nausea include iron tablets, antibiotics, cancer chemotherapeutic agents, and, less commonly, steroids. [See brief discussion of steroids, above] Nausea may also be caused by a local tumor either in the abdomen or brain, or may be secondary to other problems such as constipation, kidney failure, excessive calcium in the blood and/or emotional problems.

If the physical cause of the nausea and vomiting cannot be relieved, it is still frequently responsive to medications, such as metoclopramide (Reglan), which can be given either orally or by injection; sea-sickness medications like merazine (Bonine), meclizine (Antivert), and hydroxyzine (Vistaril); minor tranquilizers like lorazepam (Ativan) and prochlorperazine (Compazine), low doses of major tranquilizers, like haloperidol (Haldol), chlorpromazine (Thorazine), and prochlorperazine (Compazine), and occasionally by steroids, like cortisone and prednisone (Deltsone, Meticorten), or by marijuana derivatives.

In addition to drug therapy, severe nausea may frequently be relieved temporarily by placement of a tube in the stomach to empty its contents. Occasionally, sucking on ice or sips of cola or ginger ale is found to be effective, as may the ingestion of crackers or popcorn. In some patients, the avoidance of odors may be important, as may the avoidance of specific foods such as those which are sweet, salty, fatty or spicy depending on the individual, or the avoidance of foods which are either very hot or cold. Providing distractions such as talking, music, electronic games, reading and using relaxation techniques such as rhythmic breathing and positive visual imagery may also be helpful.

B. Constipation

Constipation is frequently due to a combination of factors, but usually involves to some degree the use of narcotics. In fact, this side effect is so common that many physicians recommend preventive measures be undertaken as a preventative as soon as narcotics are started for pain. Antidepressant medication may add to the problem, as may calcium based antacids, tranquilizers and other medications. In addition to drug use, constipation may be aggravated by limited intake of fluids and bulk in the diet, inactivity, generalized weakness or by high levels of calcium in the blood due to cancer in the bone, especially when linked to lack of activity. Occasionally, a tumor may cause mechanical blockage of the intestines, but much more common than this is mechanical blockage from a fecal impaction (a hard lump of stool in the rectum which the weakened patient cannot pass). One further possibility that is easily relieved -- a patient who is bed ridden may purposely retain stool out of fear of soiling the bed.

Perhaps the most important approach to the treatment of constipation is the regulation of pain medications to the extent possible. Frequently a patient will experience less constipation from one narcotic preparation than another even at dosages which provide equal pain relief.

Maintenance of a satisfactory intake of roughage and fluids is usually advocated early in the course of the disease along with bulk type laxatives, such as Metamucil, Colace, and Senokot. If constipation still occurs, more powerful laxatives may be used, such as Milk-of-Magnesia, Peri-Colace, Doxidan and lactulose. Enemas may be required, as may be mechanical removal of a fecal impaction.

In addition to drug and dietetic therapy, the provision of privacy is often important, as well as arranging for the patient to assume an upright position for bowel movements, usually with the use of a bedside commode. Warm liquids may be helpful, as may a soft massage of the abdomen. Smokers may also be helped with a cigarette.

C. Diarrhea

Diarrhea is far less common than constipation in the terminally ill, but just as varied in causation. One frequent cause of diarrhea is liquid nutritional supplements released into the intestinal tract through feeding tubes. Other common causes are anxiety, previous radiation therapy to the abdomen, the use of antibiotics, and various infections of the intestines. A frequently overlooked and readily treatable cause is a rectal impaction (hard stool in the rectum), which commonly causes diarrhea like passage of loose stools if it does not completely block the intestinal tract causing constipation.

When possible, diarrhea should be treated by eliminating the cause -- changes or elimination of the food supplements being given by tube feedings, treatment of infection, or removal of a fecal impaction. At times, changing the narcotics to one more constipating may have the desirable side effect of eliminating the diarrhea. If these therapies do not work, use of typical drugs for diarrhea may be successful (Kaopectate, Lomotil, and Imodium, among others).

D. Loss of Appetite and Weight Loss

Loss of appetite (medically called "anorexia") and weight loss ("cachexia") are not usually present early in the course of cancer but are almost always present during the end-stages. Weight loss is also common during the end-stages of other terminal illness -- heart, liver, lung and kidney failure, as well as Alzheimerís disease.

When intake of carbohydrates falls below a certain level, chemicals called "ketones" build up in the blood from the breakdown of body fats. These ketones further reduce food intake by interfering with the patientís normal appetite producing a vicious cycle of decreased input, increased ketones, decreased appetite and weight loss.

When this happens early in the course of the disease, as the result of depression or of medical therapy for cancer, for instance, and the patient has a significant amount of time to live, it is important to take steps to prevent the malnutrition that will inevitably follow. When, however, this occurs as part of the dying process late in the course of the disease, health care providers are reluctant to interfere because doing so is likely to result in more patient suffering than relief of discomfort.

In addition to the ketone effect, it is now believed that the terminal loss of appetite in the cancer patient is closely related to various chemicals either released by the tumor itself or by the body in response to the tumor. This gives hope that a specific blocking agent may soon be found to reverse the process, but, unfortunately, none is presently available. Physicians are therefore generally left to make suggestions of limited value, such as encouraging menu variations, smaller meal portions, meals served in a room other than the patientís bedroom, dressing the patient to eat, use of sherry or wine, selection of a preferred diet, family feeding, elimination of odors, food supplements, specific mouth care prior to eating, and dental consultations regarding dentures which have become ill-fitting due to weight loss.

Some drugs which are used to try to stimulate the patientís appetite are steroids (most commonly Decadron and Medrol), derivatives of male or female hormones, metoclopramide (Reglan), Cytoproterone and marijuana derivatives. [Note: another drug which has recently been suggested as potentially helpful in fighting weight loss in certain conditions is Thalidomide, which shares with marijuana a troubled past history.]

A major question in the treatment of the anorexia and weight loss seen in many terminal patients is the advisability of employing a feeding tube to bypass the need for oral intake of food. Only in America, where the dying process is not accepted as natural, do we tend to associate lack of food and fluid intake during the dying process with "starvation" and "thirst." This will be discussed further in the chapter discussing nutrition and hydration in relationship to suffering, but in brief it is fair to say that most physicians who are active in the field of palliative care do not believe that forced "feeding" through artificially placed tubes either prolongs life or reduces suffering.

E. Trouble Swallowing

Many diseases which involve multiple areas in the brain such as Alzheimerís Disease and strokes are associated with mechanical difficulties swallowing. Cancers around the mouth, including those of the tongue, larynx, esophagus and stomach, may also cause similar problems. More frequently, however, swallowing problems in cancer patients are due to irritation of the lining of the mouth as a result of chemotherapy and radiation, vitamin deficiencies, dental problems such as infections of the gums, drug side effects (tranquilizers, antihistamines, steroids, and antidepressants), poorly fitting dentures, and local infection with fungus brought on by previous use of antibiotics and cancer chemotherapy. Other common causes of difficulties swallowing relate to the general debility we associate with terminal disease -- generalized weakness, confusion, mouth breathing, and nausea.

Swallowing difficulties may be dangerous as well as causing malnutrition and dehydration. Most frequently, it is associated with the development of aspiration pneumonia, a non-infectious chemical irritation of the lining of the lungs which occurs when food and fluids, as well as saliva and regurgitated stomach acid, are aspirated into the lungs instead of being swallowed into the stomach.

Treatment of swallowing difficulties should be directed at the specific cause whenever possible. Although efforts are likely to be made to change the nature and consistency of foods and fluids offered the patient, these changes seldom produce significant improvement and run a high risk of causing pneumonia themselves. Depending on how long the patient is likely to be unable to swallow safely, a decision is likely to be required as to whether and what artificial means of providing nutrition and hydration should be employed. Fluids can easily be given by vein, but provisions of adequate nutrition for any extended period of time requires either a feeding tube or placement of a large intravenous line in one of the big blood vessels in the patients chest, a procedure which often leads to significant complications itself.

Whatever the cause, when swallowing is difficult, medications should preferably be given by suppository, patch or injection instead of by mouth. Care should be taken as to what foods are offered to the patient and the form in which it is offered, although it is hard to determine without trying which form is most likely to be well tolerated. Whatever the situation, forced feeding by mouth is seldom wise. [Note: Jello is frequently tried in these situations but is notorious for causing aspiration pneumonia]

F. Dry Mouth

Although commonly attributed to lack of fluid intake, a complaint of dry mouth is less likely to result from decreased fluid intake than other factors. Studies have shown, in fact, that a complaint of dryness of the mouth or thirst is just as common in patients receiving plenty of intravenous fluids as in those patients who are not, suggesting that the sensation is related to local factors and not the absence of fluids. Common causes of dry mouth in these patients are the side effect of medications (including many antidepressants), mouth breathing, the after effects of radiation to the mouth area and salivary glands, local infections, most commonly due to a fungus following the use of antibiotics and cancer chemotherapy, (monilia/thrush), and/or food debris and dried sputum that collects in the mouth as part of the general state of weakness.

Most important therapeutic measure in dealing with dry mouth involves reversal of causes, but this may not be possible. Medications are not likely to be helpful, except for mouthwashes or similar therapies aimed at local fungus infections, usually monilia, which is often very responsive to mycostatin (Nystatin), fluconozole (Diflucan) or other anti-fungal medications.

In spite of the lack of specific therapy, local care is often very helpful in eliminating the "dry mouth" problem. This includes washing of the mouth with salt water, baking soda or peroxide every two hours, sucking on ice chips, frequent sips of water, sour candies, artificial saliva (Xerolube, Salivart), topical anesthesia (Viscus Xylocaine or Dyclone), Vasel bland cream, buttermilk, yogurt, and cold fruit nectars. Humidification may also be helpful.

Unfortunately, while a "dry mouth" complain is likely to evoke a search for local causes to remedy, a complaint of "thirst" is likely to lead the caregiver to mistakenly think in terms of inadequate fluid input. This may inadvertently lead to consideration of a feeding tube being passed typically from the nose down the back of the throat into the stomach, a procedure which only aggravates the irritation of the mouth by encouraging mouth breathing and placing a foreign body up against the dry membranes of the throat.

[Note: This is not to imply there are never times when dehydration should be treated with fluids through a feeding tube. This may be perfectly correct when the local condition is temporary, such as immediately after radiation or heavy chemotherapy, when the patient is not in the end stages of the disease, and the rare time when "thirst" is truly caused by a lack of fluids (dehydration).]

G. Nutrition and Hydration

Problems with nutrition and hydration are almost universal in the terminally ill patient. Although they do relate to problems in the digestive tract, they will be discussed separately in a later chapter because the medical considerations are so overlapped by related issues -- ethical, legal, moral, social and religious.

6.03 Problems with Breathing and the Lungs

A. Shortness of Breath

Shortness of breath, medically referred to as "dyspnea," is probably the third most common symptom during terminal illness after pain and nausea. When experienced early in the course of a terminal illness it is usually due to a complication of the disease process itself or to a co-existing medical condition which may have been made worse by the effects of the terminal disease. In contrast, when it occurs in the last week of life, it is more likely to represent a combination of more general factors related to the terminal state -- muscle weakness, inability to maintain circulation of the blood, generalized infection, and poor general metabolism of the body. This type of shortness of breath is often characterized by the production of a sound deep in the chest and commonly referred to as a "death rattle."

When dyspnea occurs early in the course of a terminal condition, the exact cause should be sought and attempts made to reverse the process. In this situation, a chest x-ray along with clinical examination is likely to be very helpful. Commonly, fluid is found in the chest (hydrothorax) or in the abdomen (ascites) which can be removed through a needle or with the temporary insertion of a tube (catheter). If pneumonia or other infection is found, treatment with antibiotics is indicated as long as other body functions are adequate to provide meaningful life for the patient in the future. If the patient has developed a wheeze due to spasm in the tubes leading to the lungs (bronchi), the same medication that benefit asthma are likely to be helpful. If the patient is anemic (low blood hemoglobin level), proper medication or transfusions may help. At times, therapy may be indicated to maintain a normal heart rhythm if there are irregularities in the heart beat.

Another common cause of shortness of breath in the terminally ill is the development of blood clots in the veins of the legs or pelvis which break off and flow through the blood stream to the lungs. Treatment of this condition, referred to as "pulmonary emboli," requires the use of "blood thinners," most commonly Heparin at the beginning followed by warfarin (Coumadin), to limit clot formation. On occasions, if the patient is very ill from the blood clots but not in the terminal stages of the disease, surgery or the placement of a special device in the large vein running through the abdomen (inferior vena cava) is also advisable to prevent sudden death.

On occasions, radiation or other cancer chemotherapy may be helpful if there is extensive metastatic cancer in the lungs, but this is in fact quite rare, the presence of tumor tissue in the lungs seldom being so extensive as to cause shortness of breath.

If the patientís heart or kidneys are performing poorly, water is likely to build up in the lungs, in which case appropriate medications, including diuretics such as furosemide (Lasix), is likely to be helpful and well tolerated by the patient.

At times patients experiencing shortness of breath may also be helped by simple atmospheric modifications, like use of fans, nebulizing fluids for humidification, cooling a room, a change in position, or simply teaching the patient to breath through pursed lips creating a little back pressure in the lungs. Although most people think in terms of using oxygen, this rarely reverses a downward course of the disease over a short period of time and tends to be destructive of the patientís ability to enjoy life because oxygen therapy is difficult to stop once started. Continuation of oxygen then requires the patient to be "hooked-up" to some apparatus greatly limiting mobility and quality of life for the short time remaining.

[Note: As with artificial feeding and hydration, this is not to set a general rule that oxygen has no place in the relief of shortness of breath in the terminally ill, but only to suggest oxygen tends to be over used, in large part in response to the expectations of the family, with minimal true benefit to the patient.]

In contrast to dyspnea early in the course of illness, dyspnea appearing in the very terminal stages of the disease process requires a very different approach in which a determination of the exact cause is not likely to be helpful. In this situation, primary concern should be comfort, not cure, and the inevitability of death accepted as no longer an enemy. In fact, because severe dyspnea is so distressful -- often the most difficult of all symptoms to treat -- many patients at this point in the course of this disease look to death as a potential friend, not an enemy at all.

By far the most important treatment of terminal dyspnea, as in the treatment of pain, is the proper use of morphine and its derivatives. And, as in the treatment of pain, it is important to consider the interplay of tolerance, the need for symptom relief, and the potential of suppressing respirations. When a patient is truly oxygen deprived and there is hope of reversing the disease process, it is reasonable to avoid a drug which reduces respiration and might cause death. When, however, there is no chance of reversing the disease process and the potential risk of causing death would be either accepted or welcomed by the patient and family, this fear is no longer reasonable. To the contrary, as with pain relief, because these patients have almost routinely developed tolerance to the effects of narcotics, there is little risk of suppressing respiration, but it is still reassuring to know that even if suppression were to occur, it would only result in a mixed blessing.

[Note: Some people will resist the concept of accepting the risk of potentiating death in the treatment of distress, even though it is well accepted by ethicists, legal scholars, medical leaders, palliative care specialists, and even by most religions. "Double-effect therapy," as it is called, is discussed at length later in this book, and actually stems from early Greek medicine through the middle-age teachings of Catholic theology.]

At this very late stage, if oxygen is available, it may be reasonable to try its use, because many patients perceive it to be beneficial and the threat of interfering with mobility no longer exists as the patient is now likely to be essentially bed-bound. In reaching the decision to use oxygen, however, two thoughts should be kept in mind.

First, while patients with terminal shortness of breath may feel better when given oxygen, there is no proof it is medically beneficial, so its use should thus be based on the patientís perception of benefit, not specific medical indications.

Second, keep in mind that the sound of a "death rattle" does not indicate physical distress to the patient, but that the sound itself may either go unnoticed or be psychologically very upsetting to the patient. This means, if the patient is not upset, nothing need be done. But if the sound itself upsets the patient, efforts to relieve the rattle are justified. One way to relieve this distress may be to give oxygen, not for its therapeutic value but because doing so makes noise from the delivery system, thus reducing the patientís awareness of the sound. If this fails or if oxygen is not easily available, drugs which dry up secretions can also be used, although they all run risks of side effects. These include scopolamine, atropine sulfate, and antihistamines like Benadryl. [Note: use of these agents for relief of family anxiety is not justified, for they may negatively effect the patient, whoís well-being should be the primary concern.]

Finally, it is worth noting that the most common symptom leading to the use of high doses of sleeping medication to induce continual sleep [discussed in a later chapter under the designation of "terminal sedation"] is unrelieved dyspnea.

B. Cough

Cough is another frequent symptom associated with terminal illness. Early in the course of the disease, it is likely to be due to a specific condition like bronchitis, pneumonia, heart failure, or blood clots, in which case specific medical therapy aimed at the particular cause is indicated. Late in the disease process it often accompanies the same causes as those producing shortness of breath. In this case, it is often suppressed by the use of narcotics for relief of pain or dyspnea independent of the cough. If not, it may be helped by removing irritants, such as odors or cigarettes, by oral moisturization and mouth care, and by humidification.

Another common cause of cough in the debilitated patient that should be considered is aspiration of food and fluid. This may be readily apparent when there is a close time relationship between the cough and eating or drinking, but the cough may also be produced by resultant inflammation within the lungs in which case the timing is not apparent. When delayed, a chest x-ray is likely to be suggestive of recurrent aspiration.

C. Hiccough

Hiccough may be a surprisingly persistent problem in terminally ill patients. Unlike typical hiccough, which lasts for only a short period of time, hiccough in the terminally ill may be persistent for days and weeks in spite of medical therapy. Persistent hiccough in this situation is usually indicative of either direct pressure on the diaphragm by a tumor in the chest cavity or an enlarged abdominal organ below the diaphragm. Alternatively, it may be due to a process in the chest, often the tumor itself, irritating the phrenic nerve as it passes through the chest to innervate the diaphragm from its origin in the spinal cord of the neck. When triggered by irritation instead of the normally conducted impulse from the brain, the diaphragm contracts suddenly instead of in the normal sequenced order typical of normal breathing thus producing hiccough.

One fairly common cause of hiccough that is easily relieved is upward pressure on the left side of the diaphragm due to a collection of gas in the stomach. When this is not relieved by the simple process of the patient belching, the gas can be removed by passing a tube from the nose to the stomach which allows the gas to escape and relieves the hiccough.

Occasionally hiccough can be relieved by eating raw sugar or using common antacids like Mylanta. If this does not work, physicians will often pass a tube through the nose into the back of the throat which somehow causes a nerve reflex relieving the hiccough.

Some of the drugs commonly used to try to control hiccough include tranquilizers like Thorazine or Haldol, regulators of stomach action like Reglan, steroids like Decadron, or drugs used to control seizures, like Dilantin.

When uncontrollable by these maneuvers and medications, persistent hiccough may require neurosurgical techniques which block the phrenic nerve as it travels from the neck through the chest to the diaphragm. This is most commonly required in patients with cancer involving the chest cavity pressing directly on the left or right phrenic nerves which serve the respective side of the diaphragm.

D. Secretions

Most people are not aware of the large quantity of fluids normally produced each day by the body in the sinuses, salivary glands, lungs, and stomach and which passes into the digestive tract only to be reabsorbed and returned to the blood stream from the intestines. In illness, this unrecognized internal flow of fluids is often interrupted and the liquid, commonly referred to together as "secretions," then become a problem of significance. Obviously, anything which blocks the passage of these secretions will cause an accumulation above the block typically resulting in regurgitation and vomiting and frequently causing aspiration into the lungs. Even without blockage, trouble swallowing may similarly lead to accumulation of secretions above the throat which eventually finds its way "down the wrong pipe" into the lungs. In the presence of such mechanical problems, an exact determination of the cause and direct therapy is likely to be necessary if the patient still maintains a significant quality of life. Although some medications may be employed to decrease the amount of normal secretions, this approach is not likely to be successful to any significant degree.

In some patients, increased secretions may be due to infection, while in others, generalized weakness may make it difficult for the patient to cough and swallow effectively. When infection is present, antibiotics may be helpful, but it is difficult to treat the generalized weakness making the repeat suctioning of excess secretions from the back of the throat required for comfort. If the patient is near the end of life, the patient is likely to request only minimal quantities of fluids by mouth, which tends to help reduce secretions. If this occurs, use of artificial hydration with intravenous fluids is only likely to cause increased problems with secretions.

6.04 Neurologic Problems

A. Insomnia

Insomnia in the terminally ill is commonly the result of sleeping during the day and minimal activity, but is frequently made worse by inadequate treatment of physical symptoms and mental distress. Poor planning of medication dosing which requires the awakening of the patient should be an easily remedied cause of insomnia. A surprising number of patients experience night sweats which interfere with sleeping both because they wake the patient and because they leave the patient to lie in water soaked bedclothes.

Although it is hard to force a terminally ill patient to be more active or to stay awake during the day when there is little meaningful distraction, it is not hard to insure that symptoms like pain, nausea, and dyspnea have been adequately treated. In addition, sweating can often be relieved using anti-inflammatory medications like steroids, so-called NSAIDs (Non-Steroidal Anti Inflammatory Drugs) like Naprosyn, Indocin or Motrin, or with small doses of major tranquilizers like Thorazine.

When such methods fail to help the patient sleep, small quantities of alcohol at bedtime, traditional sleeping pills, or increased dosage of a longer acting narcotic at bedtime is likely to be helpful and justified. On other occasions, patients may be greatly helped by efforts to decrease noise and activity within the room at night or by providing background activity such as a "white noise-maker," television or radio to help distract the patient from his or her other thoughts.

B. Confusion, Delirium and Dementia

Confusion and delirium are essentially the same condition characterized by abnormal changes in thought processes, although laymen tend to refer to confusion while physicians tend to use the word delirium. Characteristically, delirium is rapid in onset, over hours or a few days, and is potentially reversible without lasting effects. Typically, it is caused by processes going on outside the brain, such as fever, drug reactions, alcohol abuse, or problems with the circulation, respiratory system, liver or kidneys.

In contrast to the terms confusion and delirium is the term "dementia," which is more universally accepted as suggesting progressive mental difficulties which are not only irreversible but due to disease which directly affects the brain. Because dementia is usually the result of a slowly progressive process -- either Alzheimerís disease or the result of multiple strokes -- we traditionally do not consider dementias to be terminal illnesses, but this is truly an aberration of our present thinking which is likely to change in the future as Alzheimerís disease becomes even more common with the aging of our population and an ever increasing cause of death in the United States.

A major difference between delirium and dementia is that delirium is usually a symptom of another condition while dementia is usually a disease process of its own. This means that when delirium co-exists with a terminal illness, it is usually due to that illness, whereas when dementia co-exists with another terminal illnesses, they should probably be thought of as two separate disease processes.

The symptoms we associate with delirium usually indicate a widespread failure of brain function which is likely to include disturbances of consciousness, attention, thinking, perception, memory, psychomotor behavior, emotion, orientation, and the sleep-wake cycle. Also typical of delirium is a tendency of symptoms to fluctuate up and down in severity, often with surprisingly abrupt changes in level of brain function over a very short period of time from minutes to hours.

When delirium is pronounced, it is quite easy for the patientís family to recognize and the physician to confirm. Unfortunately, when the symptoms of delirium are less pronounced, it is very common that both the patientís families and the patientís physician fail to recognize its presence, especially in situations when there are likely to be so many other reasons for mental abnormalities.

Among the many early signs that are likely to go unrecognized as indicative of delirium are the following, which I list not to make the reader an expert in the diagnosis, but only to suggest they may indicate a failure in brain function secondary to a reversible general medical condition outside the brain. These symptoms include: restlessness, agitation, trouble focusing, difficulty with language, sudden profound weakness, loss of orientation to time and place, loss of attention and memory, disruption of sleep patterns, repetitive purposeless behavior -- like groping and plucking, unexplained attempts to get out of bed, jerky uneven movements, hitting at nonexistent objects, ransacking of bedclothes, pulling out of catheters, frightening and vivid hallucinations, suspiciousness, hostility and combativeness, mumbling and shouting, jerky muscle movements, shakes, or weird movements of whole extremities.

Having determined that the patient is delirious, a physician has many potential causes to consider, some of which can be easily treated while others are not. As with shortness of breath in terminal illness, the physician should first determine if the delirium is a complication of a specific disease process or is actually a sign that the patient is truly entering the most terminal stages of the primary disease before deciding how great an effort should be put forth to determine the cause.

Some of the more easily treated causes of delirium are drug reactions or overdoses caused by pain medications, tranquilizers, antidepressants, alcohol, sleeping pills, and cimetidine (Tagomet), among others. Kidney, lung or liver failure are fairly common causes of delirium which are easy to diagnose and are frequently related to reversible infections, such as pneumonia or urinary tract infection. Changes in blood chemistry, including low sodium, magnesium, or blood sugar and high blood calcium are also frequent treatable causes of delirium which are fairly common in terminally ill patients.

In contrast to such physical causes of delirium, it is surprising how often delirium results from a simple transfer of physical location in the terminally ill, especially if it is superimposed on some level of existing dementia. If such happens, improvement can be expected when the patient becomes more familiar with his or her new surroundings. Unfortunately, delirium-like symptoms may also be caused by irreversible changes in the brain, as may happen when cancer metastasizes to the brain or when the patient starts developing ministrokes.

In most cases primary therapy of delirium is directed at its underlying cause, by changing medications, treating infection, correcting blood abnormalities, etc. If, however, no cause is found or if treatment is not effective, other maneuvers may still be helpful in reversing the process. If, as is frequently the case, the patient has been relocated or left alone, stimulation with familiar faces, voices, and objects, large readable room clocks and calendars, photographs, night lights, and increased attention by all staff members can be quite effective in re-orientating the patient. If possible, drugs which cause sedation, including pain medications, should be reduced in dosage unless it results in increased suffering. Verbal reassurance from close relatives and friends that things are "okay" and "will get better" may be very helpful. In addition, when these modalities fail, tranquilizers like Haldol and Thorazine derivatives like methotrimeprazine (Levoprome) and midazolam (Versed) may be effective. Restraints should generally be avoided if at all possible, as they are likely to increase patient agitation.

Successful treatment of delirium is particularly important because delirium increases the patientís sense of helplessness and loss of control, feelings frequently mentioned by patients who seek or actually undertake suicide. Patients exhibiting minor levels of delirium are particularly likely to react negatively to episodes of confusion or hallucination which can result from the use of narcotics, as they tend to foster the perception that they are losing control of their minds. This may produce the difficult situation in which sedation with tranquilizers or sleeping medications (hypnotics) are used to treat delirium and at the same time frequently produce episodic periods of increased delirium.

It has been reported that as many as 10% to 20% of patients experience delirium at the very end of life requiring heavy sedation using narcotics, tranquilizers, or sleeping medications, but that percentage seems high to the author. Looked at from a different viewpoint, many practitioners suggest that delirium should be considered a part of the dying process which does not produce suffering and need not be treated at all unless required for the comfort of the family. [See further discussion below in the chapter on terminal sedation.]

C. Terminal Restlessness

Although terminal restlessness may occur as part of delirium, it sometimes occurs alone or only in association with such other symptoms as agitation and wandering. If the patient is mentally unable to express discomfort in general, restlessness may be the only clue that there is an undiscovered problem which is causing the patient distress, such as the inability to urinate, the presence of unrelieved pain, lung problems leading to low oxygen in the blood, constipation, high blood calcium levels, or a drug reaction, among others.

When no cause is found for the restlessness, one must consider a psychological problem which may be relieved by increased family contact and conversation, massage therapy, etc. At times, medications can be helpful -- tranquilizers, sedatives or increased doses or narcotics -- especially when wandering puts the patient at risk for serious injury.

At other times restlessness may be difficult to differentiate from muscle twitching, which is also fairly common in the terminally ill. Such twitching may be part of the very terminal stage of the disease when the bodyís metabolism is failing, but is often due to drugs and is therefore potentially reversible if the drug causing the problem can be identified and stopped. If no drug can be found that is causing the twitching, tranquilizers, narcotics or anticonvulsants may be used to try to control it, but only if it is bothering the patient.

D. Seizures

Seizures are common in the terminally ill, usually indicating spread of cancer to the brain or changes in the blood as a result of failure of other organs in the body. If the cause is spread of cancer to the brain, the seizures will be treated with medications similar to those used for naturally occurring seizures along with therapy, usually steroids and radiation, directed at the cancer itself. If the seizures are due to problems with other organs in the body, such as the lungs, kidney or liver, therapy will be directed at the exact cause when this is possible. If not, adequate doses of seizure medications are usually effective in achieving control, although it may require doses which tend to cause significant sedation.

E. Headache

Headache is common in the terminally ill patient either related to complications of the terminal illness or part of a pre-existing condition which the patient may have suffered for years. If it is part of an old problem, the patient can probably tell caregivers what has given relief in the past -- a good clue as to what is still likely to be effective. When headaches are new and the patient has cancer, spread of cancer to the brain must be considered likely and appropriate tests done to find out if metastases are present unless death is imminent.

If it is decided not to actively pursue the cause of headaches, it is important that the patient decide how aggressively he or she wants them treated, for there is a great variation in desires. Some patients do not find the headache particularly distressful and would prefer not to experience the sedation or mental disorientation caused by increased dosages of narcotics. For others, headaches are extremely distressful and require increased doses of narcotics even to the point of producing near total sedation. When pain requires increased narcotics for relief, attempts to reduce the pressure within the skull are usually employed. Most commonly, this involves use of radiation to the brain, but before this is done, doctors are likely to attempt to lessen pressure within the skull by using large doses of steroids, most commonly with the drug Decadron.

6.05 Conditions of the Skin

Three diverse skin problems are especially troublesome in the terminally ill -- itching, bedsores, and odors. In addition, many common skin conditions occur with increased frequency in terminally ill patients, among them, skin allergies from the use of multiple drugs and Herpes Zoster (Shingles), along with multiple skin conditions which are peculiar to AIDS.

A. Itching

Itching may be caused by specific terminal illnesses like lymphomas (cancers of the lymph glands and organs [spleen]) and diseases of the liver. It is also frequently due to drug allergies, including local reactions to medications applied directly to the skin. Because their skin is constantly in contact with sheets, patients who are bed-bound are also prone to develop reactions to chemicals used in cleaning of bed cloths and to dry skin in general. Frequent use of antibiotics may lead to fungus infection of the skin (monilia), especially in patients who also suffer from diabetes.

Treatment of itching in the terminally ill naturally is highly dependent on the cause. When narcotics cause the skin allergy, substitution of a different narcotic may be helpful in eliminating the itching, as may the discontinuation of other drugs causing the skin reaction. Moistening agents such as Eucerin may be helpful when the cause of itching is dry skin, while substitution for products which had been applied to the skin may reverse associated itching. At one time low-phosphate detergents used in the cleansing of sheets were particularly prone to cause itching, but they are seldom used today. Still, using a neutral soap instead of other cleaning agents for bed clothes may be helpful in the treatment of itching, as may substitution of cotton bedclothes and pajamas for other materials.

If itching is caused by liver disease, a specific medication, cholestyramine, is likely to be helpful. Otherwise, various drugs may be tried, including antihistamines and both the minor and major tranquilizers. When simpler medications are not successful, cortisone-like steroids are likely to be effective, both when applied locally to the skin and when taken by pill.

[Note: be sure to keep nails trimmed to reduce the harmful effect of scratching itself.]

B. Bedsores

When patients lie in bed for a long time without getting up and around it is common for those areas of the skin which bear the bodyís weight on the bedsheets to undergo changes which cause a breakdown of the skin. This is particularly likely to happen when there is reduced movement of the body, as most commonly occurs in patients who have neurological diseases of the brain or spinal cord, including strokes, multiple sclerosis, Alzheimerís disease, Lou Gehrig's Disease (amyotrophic lateral sclerosis) or secondary to trauma. When these changes occur, the covering skin is actually lost producing what is referred to as a "superficial ulcer" or "bedsore" in which either muscle or bone can be seen at its base. Because there is no skin to keep out bacteria, these superficial ulcers are always infected and are particularly dangerous because they allow bacteria access directly to the blood stream in a way normally prevented by the skin.

Unlike itching, which is primarily an annoyance, bedsores are both dangerous and a difficult medical problem which can severely limit the patients quality of life through the terminal phase of an illness. That is why it is so important to try to prevent bedsores in situations in which they can be expected to develop. Foremost among the preventive measures that need to be taken are (a) frequently changing the position of a patient who spends a great deal of time in bed, (b) making sure the bed remains dry because wetness encourages skin breakdown, (c) increased time sitting instead of lying, (d) careful choice of an appropriate mattress and covering (air mattress with lambís wool covering, for instance) and (e) maintenance of nutrition through earlier stages of the disease process.

Much preventive effort has gone into developing methods to reduce pressure points, such as the use of special cushioned fabrics to place under the body and the use of water beds or air mattresses to spread the weight more evenly. Early treatment of skin breakdown with various anti-infectious creams is standard therapy, as is early removal of dead tissue (debridement) from bedsores when they develop. Not infrequently, the use of oral antibiotics or antibiotics by injection is also required.

C. Edema

Although not truly a disease of the skin, edema is a condition which often makes its initial appearance as swelling of the skin of the lowest part of the body, the legs or buttocks, depending on whether the patient is in a somewhat upright position or lying flat in bed. For the most part, edema of the skin which results from excess body water is not a significant medical problem in itself, but it does suggest the likelihood of other possible complications, such as water in the lungs and/or brain. In the absence of other water accumulations, edema need not be treated aggressively, but its presence in the lungs and brain are more serious and require aggressive therapy.

When edema occurs in the terminally ill patient, it is frequently related to heart, kidney or liver failure, but it may just be part of the general process of dying related to poor nutrition and failing circulation. Treatment is usually quite successful and involves the use of specific drugs (diuretics) most commonly, furosemide (Lasix). At times when a specific cause is found, other methods of therapy may be tried, but if the patient is in the final stages of disease, treatment with diuretics is usually the only drug therapy undertaken.

Other than drugs, use of elastic stockings may limit the amount of swelling which occurs in the legs, along with efforts to keep the legs from constantly being positioned below the rest of the body. To the contrary, when water accumulates in the lungs causing shortness of breath or in the brain causing lethargy, placing a lying patient in the sitting position and lowering the legs is often helpful in relieving the symptoms --better the water be in the legs than in the lungs or brain. [Note: Care should be taken when using elastic stockings or similar mechanical devices that they be applied evenly so as to avoid a tourniquet-like effect which traps water below.]

Most families have a natural tendency to limit salt in patients who have edema. Doing so is theoretically helpful and at times may be appropriate, but doing so is often not necessary when diuretics are being given and may restrict one of the last remnants of the patientís quality of life -- the ability to enjoy eating.

D. Odors

Odor is frequently due to skin problems such as intertrigo, a skin infection primarily involving skin folds under the arm, in the groin, and under the breasts. Treatment usually requires the use of creams or ointments with antibiotics and anti-fungal agents, often with the addition of a steroid to decrease local irritation. Bedsores are a frequent cause of odors as well, and should be treated as noted above. A third common cause of odor in the terminally ill involves patients who have had to have a surgical procedure on the bowel, commonly referred to as an "ostomy," resulting in stool collection in a bag. Surprisingly, the resultant odor is often quite treatable by adding certain chemicals to the bag, including charcoal, aspirin, or a drug named Nilodor. Others have suggested that intake of cranberry juice may prevent the odor.

When other methods fail, room deodorizers may be helpful, the odor from infected bedsores or other wounds may be decreased by applying yogurt, or Oil of Wintergreen may be helpful when thinly spread on bedsheets.

6.06 Bladder Problems

Problems of urination are common in the terminally ill, especially in the last few days of life related to the patientís general debility. Earlier in the course bladder problems are more likely to be related to infections or obstruction, especially after medical procedures which require passing a tube or instrument into the bladder.

Infection is typically associated with frequent urination, pain on urination, difficulty in controlling urination and odor of the urine. When these symptoms are noted, evaluation of the urine under a microscope will make the diagnosis and an appropriate medication can be given. Less commonly, these symptoms do not occur and the only symptoms are abdominal pain, fever, or rapidly increasing debility. In these situations, unfortunately, there is a frequent delay in looking at the urine and making a correct diagnosis so proper treatment is delayed.

Late in the course of the disease, men are particularly likely to develop symptoms of urinary obstruction causing pain low in the abdomen, difficulty passing the urine and a very weak urinary stream. In this situation it is common for the patient to continually pass very small quantities of urine without any apparent control, in which case a quick medical examination by a physician will easily reveal the enlarged bladder. It may also reveal a very large mass of stool in the rectum (fecal impaction) which can also be a cause for difficulty urinating. If there is hard stool, it needs to be removed by enemas or manually. If there is urinary obstruction, placement of a catheter in the bladder is likely to be required. Because "urinary retention," as it is called, frequently occurs at a time when life is very short, in most cases no effort is made to remove the catheter until death ensues.

In women the most common urinary problem in the days before death is incontinence (an almost constant release of urine) although they, too, may be unable to pass urine with the development of a large bladder and pain in the abdomen. As in the men, when either incontinence or obstruction occurs in the very end stages of disease, placement of a permanent catheter in the bladder is common, although at times use of one of the new protection garments to soak up the urine in women with incontinence is sufficient and may avoid the problems associated with the permanent placement of a catheter.

6.07 Weakness and Other General Symptoms

Almost all patients complain of weakness at some time in the dying process. Although the emotional effects of existential suffering are likely to be difficult to separate from physical causes, when this complaint occurs early in the disease process, one commonly finds a specific cause which can be rectified. As death approaches, however, weakness is likely to be more related to the underlying disease or a combination of irreversible factors than any single treatable problem.

Common causes of weakness in the terminally ill patient are poor nutrition, dehydration, anemia, pain or pain therapy, fever, postsurgery effects, chemotherapy, radiotherapy, prolonged bed rest, and changes in the blood, such as low potassium, sodium, and/or magnesium or high calcium. Specific therapy for weakness depends on the cause, but late in the course of the disease efforts to reverse the weakness may cause greater suffering than the weakness itself, i.e., attempts at forced feeding or artificial hydration may be just as likely to cause suffering as to reverse the weakness. When physical therapy is applied in an attempt to reduce weakness or limitation of motion, it should be aimed more at keeping the condition stable than rehabilitation, an unattainable goal in the later stages of disease.

If it is decided that no specific intervention is warranted, it is important for families to understand why that decision has been made, for they are frequently as distressed or even more distressed than the patient about the weakness. This discussion should, of course, take place outside the hearing of the patient, and the family should be advised not to stress it in the patientís presence, as the patient is already likely to view it as a prelude to helplessness, dependency, and impending death.

Closely related to weakness is fatigue, a common complaint which can be characterized as exhaustion of physical, emotional, spiritual, financial, familial, communal, or other resources. Other typical symptoms occurring in terminal illness include tiredness, loss of appetite, weight loss, general aches and pains, as well as psychiatric symptoms, such as depression.

As with weakness, the decision to attempt therapy of these symptoms should be preceded by an understanding of the goals of treatment for the individual patient independent of the desires of the friends and family. Agents which may increase activity may also increase agitation. Drugs which increase wakefulness may interfere with the patientís desire to sleep through suffering. And attempts at reversing weight loss may only serve to increase discomfort.

Blood transfusions are usually inappropriate in an attempt to reverse anemia unless a specific goal, such as remaining alert enough to converse with a specific important person, may be met by such support. As disability increases, assistance offered to the patient should be limited so as not to overwhelm the patient with his or her loss of physical independence.

It is natural for families to consider nutrition an important part of improved life expectancy and quality of life, but very good controlled studies have suggested that aggressive nutritional therapy in cancer patients has no impact on tumor response to therapy, its effect on quality of life or survival. Contrary to the thoughts of families, many physicians believe that increasing nutrition actually enhances tumor growth more than maintaining normal tissue and may therefore be counter productive. While the author has often used this suggestion when families seemed overly concerned with forcing foods on patients who no longer desired to eat, he admits this belief is unproven, but continues to believe it is at least as reasonable as the belief that forced feeding is beneficial.

In order to improve appetite and nutrition, patients are frequently given appetite stimulants. Steroids may have a significant appetite-stimulating effect that is accompanied by increased oral intake, but their effect appears to be short in duration and is not accompanied by any significant change in nutritional status. Occasionally, female hormones will have a beneficial effects on appetite, food intake, and overall nutritional status, especially if they are also found to decrease nausea in the particular patient. It is questionable, however, how much is gained when it is not intended to produce other beneficial effects, such as relief of nausea. Small quantities of alcohol may be helpful as an appetite stimulant, but it is hard to verify its effectiveness. Another drug frequently tried in nausea related weight loss is metoclopramide (Reglan), with fair success.

It is the authors considered opinion that use of drugs for the treatment of nutrition in patients who are in the end-stages of their disease should be used primarily for the treatment of specific symptoms, like nausea, and not for nutritional goals. Nausea deserves treatment as an unwanted symptom. If this is helped, the drug should be continued with or without weight gain. Using weight gain as a goal is too likely to be impossible to measure, for increased in poundage is more likely to be related to the weight of the tumor or accumulated water than actual increase in body muscle and fat, for instance.

Going one step further, many families request something even more dramatic be done in the form of placing feeding tubes of various kinds within the patientís body. This question is addressed at greater length later in this book, but in summary should only be undertaken to achieve a short range goal and not with the hope of improving quality of life or survival in end-stage cancer patients and should be used in other patients only with their knowledge and general approval.


Table of Contents Introduction Chapter 1 Chapter 2 Chapter 3 Chapter 4 Chapter 5 Chapter 6 Chapter 7
Chapter 8 Chapter 9 Chapter 10 Chapter 11 Chapter 12 Chapter 13 Chapter 14 Chapter 15 Chapter 16 Chapter 17

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