-C.A.R.E.
Institute of Care-giving Education

LESSON NINE

Lesson 9: Managing Uncomfortable Symptoms

As your patient’s disease progresses, he or she will undoubtedly exhibit some troublesome symptoms besides physical pain. In Lesson Nine, we will briefly discuss some of the more common symptoms experienced by many terminally ill patients. This topic is covered in more detail in The Final Journey, but this lesson should provide a basic foundation of understanding.

Please note that your patient’s hospice nurse and physician may recommend medications to help alleviate uncomfortable symptoms, but even when medications are given there are some common sense, back-to-basic measures that can be taken by the caregiver to provide additional comfort. Remember to always discuss new symptoms as they arise with the hospice nurse before beginning any interventions. With this in mind, let’s begin!

1. Anorexia= Lack of interest in or desire to eat. Possible causes may include:

--Nausea from medications

--Palliative chemotherapy (Causes metallic taste in mouth)

--Constipation

--Depression/Anxiety

--Dry mouth

--Acid reflux (heartburn)

--Oral thrush (A fungal infection)

--Dysphagia (Painful swallowing or difficulty swallowing)

--Early satiety (Feeling of fullness)

--Declining condition due to disease

Whether or not the hospice nurse/physician recommends medications, you may wish to discuss and then implement the following interventions:

--Provide mouth care before meals (May use a soft toothbrush or toothette, which is a disposable, foam-like sponge on a disposable stick.)

--Prepare your patient’s favorite meals.

--Provide bland, less spicy meals.

--Present meals in an attractive manner with a pleasant presentation.

--Provide meals when your patient desires them, not just at meal times.

--Provide frequent, smaller meals.

--Avoid strong smelling foods, such as cauliflower or cabbage.

--If a bedside commode is being used, remove it from the room before meals.

--If weather permits, open a window to provide fresh air.

--Avoid scented candles, incense, etc. at mealtime.

--Offer cold foods that are soothing if your patient has a sore throat.

--Provide cool water or ice chips for a dry mouth.

--Keep your patient in a 90 degree sitting position for 30 minutes if he or she is complaining of heartburn.

--Prepare foods with medium-thick consistency if choking is a problem.

--If practical, assist your patient into another room other than the sick room for meals.

--Provide delicious, nutritious smoothies and other liquid supplements. (Recipes are in The Final Journey)

Watching a loved one’s appetite decrease more and more is very difficult for family and friends. It is a harsh reminder that death of a loved one is near. Most likely, your patient will have no intake in the final days of life. This is natural and part of the dying process. As a Vaisnava caregiver, it may help you to remember that during his last days on this Earth, Srila Prabhupada exhibited this symptom as well.

2. Anxiety=May manifest as insomnia, nightmares, rapid breathing and heart rate, tremors, nausea, abdominal pain, headaches, loss of concentration, and irritability. Some causes include:

--Side effects from medications

--Fear of dying

--Actual physical pain or fear of pain

--Grief over present and future losses

--Continued denial (Anxiety can manifest if your patient is having a difficult time coping with the harsh realty of his terminal condition.

Anxiety can be as much physiological as psychological. Some physical causes include:

-- Hypoxia (Diminished oxygenation associated with impaired oxygen and CO2 exchange.)

--Dehydration

--Electrolyte imbalance

--Impending cardiac arrest

--Pneumonia

--Arrhythmia (Variation in the regular rhythm of the heart)

--Anxious confusion due to disease process, such as cancer that has spread to the brain.

Again, you patient’s physician may prescribe medication, but you may want to assist your patient by using the following interventions:

--Pursed lip breathing: Encourage the patient to slowly inhale through his nose and then slowly exhale through his mouth while pressing his lips together, leaving a tiny air space. Continue for a few minutes until the patient appears less anxious.

-- At an appropriate time, you may wish to ask your patient, “What are you most worried about”? This may assist him or her in focusing on the cause of his anxiety. Provide an atmosphere of loving support and acceptance.

--Create a Krishna conscious environment: Ultimately, only by being rightly situated in spiritual life can we completely rid ourselves of material anxiety.

Some suggestions:

--Offer to play a favorite chanting tape using a low volume.

--Softly read aloud the scriptures.

--Chant japa together.

--In a calming voice, tell your patient about the Lord’s pastimes in Vrindavana.

--Hang a favorite picture of Krishna near your patient’s bed.

--Place a photo of his favorite Deities on the bedside table.

--Encourage him to discuss his favorite ways to render devotional service to the Lord. In this way, you will be assisting your patient to meditate on serving the Lord without even leaving his bed! This will surely reduce his anxiety.

3. Minor Bleeding=Includes superficial skin abrasions, skin tears, and lesions. A terminally ill patient with decreased mobility, impaired nutritional status, and whose circulatory system may not be functioning as it once did may exhibit dry, flaky skin that is vulnerable to bruising and abrasions. Some causes may include:

-- Disruption of small blood vessels or topical lesions

-- Rubbing or other trauma to fragile wound areas

-- Incorrect repositioning of the patient resulting in skin tears and abrasions

-- Bleeding from mouth, gums, or nose caused by drying of mucous membranes (Can be caused by side effects from medication, chemotherapy, or radiation therapy.)

The hospice nurse may recommend a topical ointment, such as an over-the-counter triple antibiotic ointment, covered with a sterile gauze dressing. Report all skin irritations, no matter how small, to the hospice nurse so it can be assessed and properly treated. If nose bleeds due to dryness become a problem, the physician may order a nasal spray to keep the mucous membranes moist. Nasal dryness and subsequent bleeding can occur if the patient is receiving oxygen via a nasal cannula (nasal prongs). The hospice nurse may recommend humidified oxygen to prevent dryness.

The following are some interventions you may wish to discuss with the hospice nurse:

--If your patient has bleeding, sensitive gums, provide a soft toothbrush or toothette to brush his teeth.

--Avoid harsh mouthwash that might cause stinging. If he desires to rinse with a mouthwash, dilute a mild mouthwash with lukewarm water.

-- For a dry mouth/tongue, mouth care is required every two hours while the patient is awake. It will vary according to the patient’s preference, but mouth care for a hospice patient generally consists of brushing the teeth, rinsing with a diluted mild mouthwash, if appropriate, and applying a lubricant, such as Chap stick ointment, to dry lips to avoid cracking and bleeding. Some patients benefit from rinsing their mouths with a mixture of water and 2% hydrogen peroxide. The taste can be unpleasant, but it is usually effective for cleansing a sore, dry mouth. Dry mouth can be the beginning of oral thrush. Notify the hospice nurse if your patient complains of a dry mouth.

--When giving a bed bath, always use a mild soap and soft cloth. Never rub when drying the skin, but gently pat dry to avoid skin abrasions. Apply a gentle lotion, especially to bony prominences. (This subject is discussed in detail in The Final Journey)

--If you observe a newly developed, minor skin abrasion, cleanse with Normal Saline or with water and a mild soap. Apply an over-the-counter antibiotic ointment and cover with a sterile gauze dressing, using a first-aid paper tape that is gentle on the skin when removed. Cleanse and change the dressing two times a day, or more if it becomes soiled.

--Bring any new skin opening it to the attention of the hospice nurse during her next visit.

--Avoid friction rubs against the bottom bed sheet when repositioning or lifting the patient in bed.

--Place a cool mist humidifier in the patient’s room to add moisture and help reduce drying of nasal passages.

--When a patient is receiving oxygen treatment, never place an oil-based agent, such as Vaseline, in his nostrils in an effort to reduce nasal dryness. It can settle in the lungs and cause pneumonia.

If your patient has a nosebleed (epistaxis):

1) Remove nasal prongs if patient is receiving oxygen therapy.

2) Have the patient sit in an upright, 90 degree sitting position with head slightly bent forward. (Never have the patient bend his head backwards or he can swallow blood.)

3) While he breathes through his mouth, pinch the nostrils just below the bridge of the nose using your thumb and forefinger. Hold for about five minutes. Repeat if the bleeding has not stopped.

4) A cold compress may be applied to the forehead or back of the neck.

5) If the bleeding has not stopped in about 20 minutes, notify the hospice nurse.

--A small amount of bright red rectal bleeding is often a sign of hemorrhoids. Be sure the hospice nurse is made aware of any rectal bleeding, no matter how small of an amount. The physician may wish to increase the patient’s laxative and stool softener as well as order a suppository to reduce swelling. A warm sitz bath often soothes the burning and discomfort caused by hemorrhoids.

4. Massive Bleeding—

Some causes may include:

--Cancerous tumor destroying large blood vessels

--Some liver disorders

--Clotting disorders

Major bleeding episodes may be accompanied by symptoms of anxiety, restlessness, and cool moist skin that appears pale. Immediately notify the hospice nurse if the patient has:

--Blood in the urine (hematuria)

--Bloody stools

--Is vomiting dark, “coffee-ground” material (hematemesis)

--Has uncontrolled nose bleeds

--Has bleeding of any kind.

Caution: As a caregiver, always wear latex or other medical gloves when coming in contact with any type of bodily fluid, either directly from the patient or on soiled dressings, clothing, or linens. Properly dispose of waste materials in large, heavy-duty trash bags that are securely tied. Immediately wash your hands with a disinfectant soap and water.

Notify the hospice nurse, stay calm, and relax the patient while waiting for the nurse to arrive.

5. Constipation=Difficult, irregular stools. The majority of terminally ill patients experiences constipation. Prevention, by treating it as a problem before it becomes one, is a challenge all caregivers must confront. Patients will complain of hard, formed stools, inability to pass stool for at least two to three days, seepage of a small amount of liquid stool (diarrhea leaking passed the fecal mass), and mild to moderately tender abdominal distention. Constipation is often accompanied by nausea and vomiting. It can also cause anorexia, rectal pain, and confusion. Each individual varies, but as a general rule, a patient should have a bowel movement at least every three days. Constipation can lead to painful hemorrhoids as well as to fecal impaction (Stool that remains in the rectum and is unable to be evacuated.) Occasionally, the impaction is higher up and hospitalization may be necessary to clear this type of complication. Even more serious is a bowel obstruction. (Stool that collects higher in the intestines.)

Therefore, it is recommended that a caregiver keep a written record of the patient’s bowel movements. This may seem unpleasant, but the medical consequences of prolonged constipation are even more unpleasant.

Common causes include:

--Side effects of medications

--Decreased mobility

--Decreased fluid intake that reduces fluid in the colon

--Decreased fiber intake

--Dehydration

--Improper use of laxatives

Most likely, the hospice nurse/physician will review your patient’s bowel medications and make adjustments as needed. Some common sense interventions that may help include the following:

--Encourage an increase in fluids.

--Serve warm prune juice.

--Encourage intake of fiber-filled foods, such as bran. (Bran should only be taken if the patient is drinking a lot of fluids. Otherwise, it will be counterproductive.)

--Encourage an increase in fruits and vegetables.

--Provide fruit “ice pops” by pouring fruit juice into a paper cup, placing a spoon in the cup, and freezing. Remove “ice pop” from cup and serve.

--If possible, encourage the patient to walk even if he just walks around the room once or twice. (If he is bed-ridden, simply by repositioning the patient every two hours, he will receive some benefits of mobilization.)

--Serve high fiber breads and cereals, such as oatmeal.

6. Diarrhea=Frequent, loose or liquid bowel movements. Diarrhea is less common in hospice patients than constipation. It does occur, though, and can be accompanied by painful abdominal cramping. Possible causes are:

--Incorrect dose of laxatives and stool softeners

--Undetected fecal impaction

-- Early bowel obstruction

-- Side effects of chemotherapy

--Side effects of medications

-- An intestinal obstruction caused by malignancy

--Diet, including lactose intolerance

-- Pre-existing conditions such as colitis or irritable bowel syndrome that may exacerbate with anxiety and fear

Notify the hospice nurse and ask about medications being taken that may cause diarrhea. He or she will most likely advise you to stop administering laxatives and other bowel medications until the diarrhea has stopped.

Ask the nurse about the following measures:

--Stop food supplements, such as milk shakes, that may cause diarrhea.

--Serve a “clear liquid diet” only until the diarrhea has stopped. Serve clear juices, such as apple juice; soda, such as ginger ale; clear vegetable broth; water; and a sport’s drink, such as Gatorade. (As a rule of thumb, a “clear liquid diet” is anything that you can clearly see through).

--Avoid milk products, non-clear soups, and non-clear juices. Never give prune juice when the patient is experiencing diarrhea.

-- When diarrhea ceases, slowly increase diet to full liquids, such as cream soup. Increase diet as tolerated to a soft diet and then to a regular diet. The patient’s hospice nurse or physician should advise you as to when to restart the patient’s bowel medications.

--If certain foods, such as products containing lactose, are causing diarrhea, keeping a “food diary” should help to solve the mystery. Keep a daily log of all foods that are eaten by the patient and when. Also, list each time the patient had diarrhea after eating. A pattern should begin to appear as to what foods, if any, cause diarrhea.

--Immaculate skin care is especially important when a patient has diarrhea because he is at high-risk for developing soreness, redness, or rash on the buttocks. If he is able to shower or bathe without assistance, provide a mild soap and encourage him to pat dry the area of concern, rather than rub dry, to decrease his chances of soreness. Whether the patient is independent with bathing or requires assistance, after drying, the caregiver should apply a thick moisture barrier cream to the buttocks area to protect the skin.

7. Dyspnea=Labored or difficult breathing. Your patient may exhibit shortness of breath on exertion or at rest. Dyspnea may be accompanied by cyanosis, a bluish discoloration of the skin and/or lips. Onset of dyspnea may be sudden or gradual and may or may not be accompanied by a cough. Possible causes may include:

--Fatigue

--Pulmonary (lung) disease interfering with air exchange.

--Infection, such as pneumonia

--Pulmonary embolus (An obstruction in the pulmonary artery, usually caused by a blood clot that has broken away from a lower extremity.

--Heart failure resulting in pulmonary edema

--Anxiety

--Anemia (Low number of circulating red blood cells. Hemoglobin, the iron-containing component of the red blood cell, is less than that needed to supply the body’s oxygen demands.

Medication may be recommended by the hospice nurse/physician. In addition, consider the following interventions:

--If the patient is in a hospital bed, the head of the bed should be raised to a 45-90 degree angle so the patient is in a sitting position. If he is not using a hospital bed, assist the patient in a sitting position by propping enough pillows behind him so his head and chest are raised.

--Reassure the patient that you will not leave him alone.

----If the patient is using oxygen therapy, be sure the nasal prongs are inserted properly. In a calm voice, remind him to “feel” the oxygen being inhaled with each breath.

--Provide a gentle breeze toward the patient’s face by opening a window, using a small electric fan (turned on low and facing the patient), or using a cool mist vaporizer (if dyspnea is accompanied by cough).

--While the patient is in a sitting position, assist him in pursed lip breathing as previously discussed.

8. Edema=Swelling due to body tissues containing an excessive amount of fluid. It can be local or generalized. A patient may exhibit peripheral edema of the extremities, most often in the feet and ankles. It is not unusual for a terminally ill patient to exhibit some type of edema as the systems of the body begin to shut down.

Some possible causes include:

--Hypoproteinemia (A decrease in the amount of protein in the blood).

--Excessive salt intake

--Fluid retaining medications

--Decreased cardiac output

--Impaired kidney function

--Fluid overload from intravenous or tube feedings

--Phlebitis (Inflammation of a vein, causing localized pain, warmth at the site, and swelling)

--Cellulitis (Inflammation of cellular or connective tissue that spreads through the tissue, causing redness, swelling, and if severe, weeping of fluid through the skin)

In addition to administering prescribed medications, please consider the following interventions:

--Unless otherwise instructed by the physician, place pillows comfortably under edematous legs and feet or if a hospital bed is being used, raise the lower portion so extremities are elevated. Either way, the legs should be raised to the level of the heart in order to be effective in reducing edema. Reposition the pillows and the patient’s extremities every two hours as tolerated or sooner if the patient desires.

--If edema is in the hand or arm gently place a pillow under the edematous limb for comfort and to help reduce swelling.

--Turn and reposition the patient every two hours as tolerated or sooner if the patient desires.

--Decrease added salt when preparing meals

--Encourage natural diuretics, such as hot herbal tea, if tolerated

--If taking diuretics, encourage potassium-rich foods, such as bananas and orange juice. (Discuss this with the physician or hospice nurse to see if it is advisable. Increased potassium may be contraindicated in certain conditions, such as kidney failure).

--Advise the patient to avoid sitting upright for long periods with legs dangling. This will increase dependent edema in lower extremities.

--Ask the physician or hospice nurse if compression stockings are indicated.

9. Fever= Is an elevation of body temperature above the normal temperature. In general, a person’s temperature is considered within normal range if it is one degree above or one to two degrees below the normal temperature. Body temperature is usually lower in the morning and higher in the late afternoon/evening.

Symptoms of fever may include:

--Flushed hot skin

--Headache

--Generalized aching in the muscles and/or joints

--Increased respirations and heartbeat

--Increased thirst

--Decreased urine output

--Weakness

--Chills

In a terminally ill patient, possible causes of fever may include:

--Infection, such as an infected wound or urinary tract infection

--Pneumonia

--“Tumor fever” (Tumor fevers are often seen with liver metastasis. Also, tumors in the Central Nervous System, such as a brain tumor, often cause a persistent fever that is either elevated or remains low grade.)

--Toxic effects of some medications

--Dehydration

--End-stage disease process

Usually, acetaminophen (e.g. Tylenol) 650 mg is usually recommended to reduce a fever. If the patient is unable to swallow tablets, the physician can prescribe acetaminophen suppositories to be administered rectally. If it is determined that the patient has an infection, such as a urinary tract infection, for example, the physician will probably prescribe an antibiotic. If the patient has an infected wound, a combination of systemic antibiotics as well as wound care with a topical antibiotic may be prescribed.

Once the cause of the fever is determined by the hospice nurse/physician, other interventions may include:

--Encourage the patient to wear lightweight, loose fitting clothing.

--Do not bundle the patient under heavy blankets in an attempt to “sweat out the fever.” Remove blankets and loosely cover the patient with a cotton sheet. Rather than tucking in the sheet, it can be “tented” by placing the edges over the side rails of a hospital bed. If a hospital bed is not being used, place pillows around the patient, keeping some space between the patient and the pillows, and drape the sheet over the patient with the edges of the sheet “tented” over the pillows.

--Provide circulating room air.

--Do not direct a fan or air conditioner directly toward the patient.

--Provide sponge baths with lukewarm water. (See The Final Journey for instructions)

--Place a cool, moist washcloth on the patient’s forehead.

--For a fever over 102 degrees Fahrenheit or 38.8 Celsius, place small ice packs in the axilla area under both arms and in the groin areas to reduce fever.

--If tolerated, encourage an increase in fluids, such as water, juices, ice chips, or Popsicles.

-- As the patient’s temperature decreases, he will probably perspire a great deal. Assist in keeping the skin clean and dry. As bed sheets become moist, change them as needed for the patient’s comfort.

--The patient’s mouth may tend to become dry with a fever. Using a moist toothette, perform mouth care every two hours or more as needed.

10. Nausea and Vomiting=

With a terminal illness, nausea can occur without vomiting and vomiting may occur spontaneously without warning of nausea. Possible causes of nausea and/or vomiting vary and may include:

--Anxiety

--Medication reaction

--Primary brain tumor or brain metastasis

--Constipation and/or fecal impaction

--Bowel obstruction

--Motion sickness

--Stomach ulcer or gastrointestinal infection

--Abdominal carcinomas

--Excessive coughing with mucous production

As a caregiver, keep an accurate record of when your patient experiences nausea and/or vomiting. This will aid the physician and hospice nurse in evaluating the cause. Usually the physician will prescribe an anti-emetic depending on the cause of the patient’s nausea or vomiting.

In addition to administering the prescribed medication to your patient, please consider the following interventions:

--Provide good oral hygiene for the patient before and after meals so mouth feels clean. This often helps to alleviate nausea.

--Avoid quick movements that produce nausea.

--Do not serve foods with harsh smells, such as cabbage, that may exacerbate nausea.

--Prepare bland foods and clear liquids until the nausea subsides.

--Offer small meals rather than large meals.

--If the patient is vomiting with nausea, ask the hospice nurse or physician if the patient should refrain from any intake for 24 hours and then be given sips of clear liquids every 30 minutes as tolerated.

--Keep a cup of small chipped ice by the bedside with a teaspoon. If the patient is weak, offer to feed him only one or two small ice chips at a time. This will help avoid dehydration.

-- Sometimes small sips of clear carbonated soda or carbonated water can be tolerated with nausea. This will also help avoid dehydration.

-- Be aware that fragrant candles, incense, or fresh flowers can cause the patient to experience nausea.

--Provide dim lighting when the patient is feeling nausea and/or vomiting.

--Provide a relaxed environment by decreasing environmental stimuli.

--Encourage the patient to rest after meals.

--Provide good oral hygiene for the patient throughout the day, especially if the patient is experiencing a dry mouth with thick secretions.

--Remove any unsightly items in the room, such as a bedside commode, to create a more pleasant atmosphere during meals.

--If your patient begins to vomit while lying down, immediately roll him over to a side-lying position so the contents are not aspirated into the lungs. If possible, assist him to a sitting position with head bent slightly forward.

In conclusion, there are many more symptoms your patient may exhibit as his or her disease process worsens. As a caregiver, keep calm so your patient does not become more anxious when feeling any type of discomfort. Since good communication is the key to a successful caregiver situation, notify the hospice nurse as soon as possible concerning new symptoms or discomfort exhibited by your patient. It may be helpful to keep a written record of any new symptoms, the times your patient experienced them, and any pertinent information that may assist the hospice team in alleviating discomfort. (For example: “Patient complained of right-sided, stomach pain just after lunch while he was walking back to the bedroom. Pain subsided after he was assisted into bed. No further complaints of stomach pain the rest of the day.) In this way, you will be able to give an accurate report to the hospice nurse which will be helpful in determining the cause of a particular symptom, as well as how it can be alleviated.

Being a caregiver is not an easy task. Keen observation, a calm demeanor, and quick intervention will assist in keeping your patient comfortable and peaceful during his or her final days.

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