Symptoms encountered by patients who die of cancer include:
SYMPTOM PERCENT (%) of patients having who
are receiving hospice care
Fatigue 95
Pain 60
Anorexia (loss of appetite) 85
Anxiety 60
Anemia 90
Constipation 65
Insomnia (unable to sleep) 60
Nausea 50
Sadness 60
Sedation/Confusion 60
Dyspnea (shortness of breath) 45
Fatigue, while not usually a feared symptom, is almost universal among people with uncontrolled tumor. Many patients find that fatigue is their worse problem and the problem that lasts the longest after treatment ends. It is easy to understand why people with active cancer don’t have much energy.
Similarly, patients know that chemotherapy and/or radiation are toxic and they expect some fatigue.
Patients often do not regain their energy for months or even years after treatment. The reasons are obscure, some patients “bounce back”, and others who received the same treatment regime do not.
Patients and their families must recognize that cancer and cancer treatment related fatigue is like no other fatigue. It will not go away after a good nights sleep or a vacation. Recovery from the effects of treatment will eventually occur, but may be incomplete. The margin between “I’m tired” and “I’m exhausted” is often very narrow and attempts to complete projects may not be successful. Patients should be encouraged to do what has to be done first- there might not be any energy left to do what doesn’t have to be done that day.
Causes of fatigue are multifactorial and include:
*Tumor burden. Tumors cause an aberrant inflammatory
response- this response is still not well understood and is the
subject of active research.
*Metabolic problems (elevated calcium, low potassium)
*Cachexia (profound weight loss)
*TNF, IL 6 (tumor necrosis factor, interleukin 6).These are
2 chemical substances made by the body which cause a variety
of unpleasant side effects such as muscle aches and pains.
*Paranesplastic syndromes i.e.: a second illness that is the result
of cancer such as: myopathy (weak muscles), or dermatomyositis
(skin rash), or low red blood counts
*Anemia
*Depression
*Medications
*Deconditioning
Treat what is treatable:
*Epogen (Procrit) or Aranesp. Medicare approves these injections
for patients who have a hematocrit(red blood cell count) equal or less
than 30, if this is secondary to chemotherapy or a myelodysplastic
syndrome (type of bone marrow failure).
Epogen is a chemical messenger that “asks” the bone marrow to make red blood cells. It is given weekly or biweekly by a shot
*Antidepressants such as: Zoloft, Prozac, Celexa, and Elavil may be
helpful; but it is important to realize that fatigue is usually not
caused by depression but by the toxic effects of the cancer and/or the
treatment.
*Stimulants including Cylert can help offset the sedative effects of
narcotics and other “comfort” medications.
*Metabolic abnormalities such as hypercalcemia (elevated calcium) and hypokalemia(decreased potassium) should be treated.
.
Hypercalcemia is a common problem for cancer patients – especially those with breast or lung cancer. Elevated calcium can be humorally mediated or result from direct destruction of bone by tumor cell invasion. Humorally mediated means that the tumor produces a chemical that “tells” the bone to release calcium.
The symptoms of hypercalcemia include nausea, fatigue, anorexia, constipation, and confusion. Treatment is usually successful and includes, hydration (fluids), Zometa, or Aredia. Zometa and Aredia are drugs given intraveneously, which lower calcium.
*Alter schedules, get family members to help with daily activities.
*Take naps, but be sure to maintain an exercise program. Don’t “take
to the bed”.
*Anorexia is one of the symptoms that patients and family find
most disconcerting and is a source of family conflict as the patient is
pestered to eat “just one more bite”. It is very difficult for the family
to watch progressive weight loss. Treatment can be tried with
Megace Suspension, Halotestin and/or Marinol.
*Changes in taste and smell are common complaints. Sometimes this
results from chemotherapy or from head and neck radiation with
resultant decrease in saliva; but often the cause is unknown.
*Dysphagia ( painful swallowing) may be caused by tumor
obstruction, by infection (Candida, Herpetic) or by radiation:
and/or chemotherapy. Special mouthwashes are available to treat
this.
*Mucositis (sore mouth) is distressing to the patient and may result in
weight loss. In addition to magic mouthwash, viscous zylocaine can
be tried.
Carafate Paste can be applied to mouth lesions. The paste is made
by crushing a 1gm Carafate pill in a small amount of water to make
a thick paste.
*Xerostomia (dry mouth)can follow radiation to the salivary glands. Salogen is helpful for some patients.
*Nutritional support may be requested by the family. Ensure,
Sustacal, Boost, etc. may be used. NG tube (tube from mouth to the
Stomach) or PEG tube (tube through skin of abdominal wall into
stomach) is usually not indicated unless the patient is receiving
active chemotherapy and/or radiation. These feedings in the setting
of advancing and untreated cancer have not been shown to increase
either quality or length of life. When no active anti-tumor treatment
is being given, TPN (total parenteral nutrition) (food in the vein)is
almost never indicated. Hydration (fluids), if insisted on by the
family, may be given IV or subcutaneously. It should be
discouraged, as it usually does not increase comfort.
Skin breakdown may be a problem for the patient. The nurse and the family should see that the skin is kept clean and dry. The family needs to learn how to inspect the skin, especially at pressure points (elevate heals, protect elbows, pad knees, keep gluteal folds dry, rotate patient off of his back).
Immobile patients should be repositioned every two hours. Use of a flotation ring is no longer advised. Moisture barrier creams such as Baza can be helpful.
Once a decubitis (bedsore) occurs, keep the patient off the affected area. Apply duoderm or another protective cover recommended by your skin care nurse. Eggcrate can be placed on the mattress. Specialty mattress- ie: flotation mattress can be used. Immobile patients should receive passive range of motion every two hours while awake.
Constipation is another symptom that is common, distressing and multifactorial. The patient should start an aggressive program using both a stool softener and a prokinetic (movement causing) agen. Agents such as Senakot S, Reglan, and Miralax are often helpful. Dietary fiber should be increased and patient should be encouraged to drink at least 24 ounces of fluid a day. Increasing activity may also be helpful.
Usual causes include:
*Strong pain medications such as Morphine and other narcotics
*Decreased fiber intake
*Decreased fluid intake
*Inactivity
*Elevated Calcium or decreased Potassium
Less common causes are:
* obstruction of the GI tract. This complication is serious and is
marked by pain, distention, and active bowel sounds.
* Spinal cord compression. Loss of cord function is often
accompanied by loss of bowel and bladder control.
Obstruction is usually due to intra-abdominal tumor, but may be secondary to adhesions.
Ovarian and colon are the most common cancer types causing this complication. Cord compression, if caught early, may be effectively treated with radiation.
Treatment of obstruction may include:
*NG Tube (tube from nose to stomach)
*Anti-emetics (anti-nausea medicines)
*Anti-spasmotics (anti-spasm medicine)
*Occasionally surgery
Diarrhea is not a common end of life problem. When it occurs, infection with with a germ (Clostridia) should be considered. Sometimes a fecal impaction can have diarrhea around it. A rectal exam can confirm this.
Nausea and vomiting are usually multi-factorial. Causes include:
*medications: 50% of patients have some nausea when narcotics
are used. Give an anti-emetic until nausea subsides as the
patient “gets used to the medication”.
*obstruction of the bowels
*brain metastasis. Metastatic lesions in the brain cause edema
(swelling), which results in nausea.
*elevated calcium or other electrolyte abnormalities
* Most of the time, the etiology of the “I just feel sick”
complaint is not understood. It may be a paraneoplastic
syndrome i.e.: due to “toxins” given off by the tumor.
To adequately treat nausea and vomiting you may need to use agents with different mechanisms of action together. Zofran, Decadron, Reglan, Haldol, Marinol, Phenergan and Compazine are often helpful. Magic suppositories usually work and are compounded of Reglan 20mg, Decadron 10mg, Haldol 2mg, and Ativan 2mg.
* Thorazine is often used; it is not very effective and has multiple
side effects.
* Prilosec and Baclofen given together may work but may take
several days of treatment.
· Pre-existing causes of shortness of breath include:
*COPD (Emphysema)
*CHF (Congestive Heart Failure)
*Asthma
*Bronchitis
*Continued smoking
· Tumors may cause dyspnea by several mechanisms including:
*obstructed bronchus. Sometimes local or endobronchial
radiation can be used to “open up” a bronchus.
*tumor destroys lung tissue
*pleural effusion (fluid in the lungs). Often effusions can be
tapped (drained with a needle) and sclerosed. This often is
very helpful for the patient.
· Pulmonary embolus (blood clot in the lungs). The hallmark of an embolus is sudden onset of difficulty breathing. Examination of the legs often shows edema on one side. The advent of low molecular weight Heparin (Lovonox) makes treatment at home possible.
· Part of overall debility
· Treat the underlying problem if possible. Symptoms may be improved by:
* Narcotics – Morphine relaxes the smooth muscles of the lungs and thus
reduces work of breathing.
* Fan directed on the patient.
* O2 by nasal cannula or mask
* Anxiolytics (anti-anxiety drugs) especially Ativan
* Steroids – Prednisone may be started at a high dose then tapered.
Sterioids are usually only effective in people with underlying lung disease.
* Flutter especially in the bedbound- use every two hours while awake.
Flutter is a device into which the patient breaths against resistance. It is
the new version of blow bottles.
* Congestion may be a result of cardiac or pulmonary problems. If heart
failure is present, the use of diuretics (fluid pills) may be helpful.
“Death rattles” often cause family panic and may result in a middle of the night ER visit. Sometimes simple in home treatments may be all that is needed.
Cause Treatment
Ineffective clearance of secretions Prop patient up and to his side
Copious secretions Scopolamine Patches ( watch for
disorientation) Suctioning
*Support groups are often of great benefit for the patient and family. Anniston has an excellent support group led by Chaplain Jim Wilson. Chaplain Wilson is also a licensed counselor. Chaplain Wilson can be reached at 256-235-5146
Myoclonic jerks are sudden unpredictable movements of a limb or the whole body.
Cause Solution
Many normal people have them as they drift off to sleep Reassurance
Normal reaction to narcotics Reassurance
Valium
Another narcotic
Hypernatremia( high sodium) Treat only if indicated in the
overall context of the illness
Renal failure Treat only if indicated in the
Overall context of the illness
“Terminal delirium” is common and is very troubling for the family.
Moaning and “talking out his head” is very disturbing for the family and is often interpreted as pain; but it is not. It is often the result of over-use of multiple medications including “sleepers”, narcotics, and sedatives.
Opioid neurotoxicity (nerve injury) is a serious and under
recognized problem.
Long term high dose opoid therapy may cause a set of symptoms
called Opoid Neurotoxicity, the symptoms of which are delirium
often with hallucinations, jerking of the limbs (which
may progress to grand-mal seizures), hyperalgesia ( expressed as
severe aggravation of existing pain, and generalized allodynia
(exquisite pain on light touch). Not every symptom need be
present to make the diagnosis.
The above symptoms are often ascribed to terminal restlessness
or inadequate pain control- but may actually be related to neuro-
toxicity from an opioid and may be relieved by changing to
another preparation and by hydration (giving fluids).
See case report
GREY NUNS COMMUNITY HOSPITAL
Compiled and Edited by
Edward Bruera, M.D.
A 67-year-old woman with an intestinal tumor was admitted to the hospital in a delirium. Prior to her admission, her family members had cared for her with guidance from her local home-care nursing team. Her family was exhausted and they indicated she had been delirious for 2 weeks. During this time, her progressive confusion prevented her from describing her symptoms, but her family, nurses, and family physician interpreted her agitated behavior as a manifestation of pain.
The family had given her increasing doses of pain medication. On assessment by the palliative care team she was found to have body jerking. The palliative care team diagnosed opoid neurotoxicity.
The team’s recommendations were:
*Rotate (switch) her pain medication
*Rehydrate
*Institute a mild sedative (Haldol)
*Rule out common etiologies of delirium including: other drugs, hypercalcemia, renal or liver failure, electrolyte imbalance, and sepsis
Within 24 hours, her agitation settled and she was much more alert. She indicated she had no pain. Four weeks later, the patient was transferred to a hospice bed. After switching her pain medication, she didn’t require any rescue doses of drugs for breakthrough pain.
The patient survived for one month after transfer, and her children expressed enormous relief that their final memories of her were not of her delirium, and that they had had added time to complete significant unfinished business.
Pain is probably the most feared consequence of cancer. Pain has many causes:
Characteristics of Nociceptive and Neuropathic Cancer Pain:
Nociceptive Pain Neuropathic Pain
(regular types of pain) (nerve pain)
Mechanism Activation of nociceptors (pain Peripheral or central neural
receptors) in skin, connective structure injury caused by direct
tissue, or bone ( somatic tumor infiltration or damage
pain) or viscera ( internal organs). caused by treatment or other
(visceral pain) medical illnesses (diabetes,
shingles).
Pathway Normal pain pathway Aberrant pain pathway
Quality of Somatic: well-localized; sharp Burning, tingling, or shock-
Pain aching, or throbbing. Visceral: like ( lancinating) Allodynia,
Poorly localized; cramping, (hurting all over),hyperalgesia
squeezing (excessive sensation of pain),
often present.
Responsiveness Usually responds to opioids Variable response to opioids
to therapy and/or adjuvants and/or adjuvants. Consider
atypical pain medicines.
Pain has been defined as an “unpleasant sensory and emotional experience” associated with active or potential tissue damage. The pain experience is multidimensional and subjective; it is “whatever the person says it is, existing whenever the person experiencing is says it does”. Pain may be acute or chronic. Somatic pain is typically well-localized and described as a sharp, aching, throbbing, or pressure-like. Visceral pain is more diffuse and described as gnawing or cramping. These types of pain usually are responsive to opioid therapy.
Neuropathic pain occurs in the absence of ongoing tissue injury. It is triggered by damage to the peripheral and/or central nervous system tissue; this damage is most commonly caused by nerve infiltration or tumor compression. Spontaneous firing of neurons produces pain characterized by dysesthesia (unpleasant and unusual skin sensations), hyperalgesia (extreme sensation of pain), and allodynia(hurting all over). Neuropathic pain usually is less responsive to opioids.
The pain of advanced cancer is generally chronic, is usually of moderate or severe intensity, and may be multi-factorial. Frequently, patients with advanced disease experience numerous pains of mixed classification. Distinguishing the types of pain is essential for treatment.
Assessment of pain intensity and character:
Onset and temporal pattern – When did your pain start? How often does it occur? Has its intensity changed?
Location – Where is your pain? Is there more than one site?
Description – What does your pain feel like? What words would you use to describe your pain?
Intensity – On a scale of 0 to 10, with 0 being no pain and 10 being the worst pain you can imagine, how much does it hurt right now? How much does it hurt at its worst? How much does it hurt at its best?
Aggravating and relieving factors- What makes your pain better? What makes your pain worse?
Previous treatments- What types of treatments have your tried to relieve your pain? Were they and are they effective?
Effect- how does the pain effect your physical and social function?
Psychosocial assessment:
· Effect of and understanding of the cancer diagnosis and cancer treatment on the patient and caregiver.
· The meaning of pain to the patient and to the family (recurrence, progression, unpleasant and anxiety provoking tests).
· Significant past instances of pain and their effect on the patient.
· The patient’s typical coping responses to stress or pain.
· The patient’s knowledge of, curiosity about, preferences for, and expectations about pain management methods.
· The patient’s concerns about using controlled substances such as opioids (morphine, Oxycontin, Demerol, Dilaudid, etc), anxiolytics (anti-anxiety drugs), or stimulants.
· The economic effect of the pain and its treatment.
· Changes in mood that have occurred as a result of the pain ( eg, depression, anxiety)
Diagnostic assessment:
*Tumor markers and other blood tests
*Radiologic studies- bone scan, CAT scans, etc.
*Neurophysiologic testing such as nerve conduction velocity.
Assessment of pain needs to be done both by the patient and by the health care provider. Having the patient answer pain assessment questions can be helpful.
Approaches to Pain Management
“Step ladder” approach is loosing popularity- it is now recognized that 30-50% of terminal cancer patients have more than one type of pain and that a “mixed” approach may be needed.
*opiods are mainstay of cancer pain management
*mild pain (1-4) NSAID (nonsteroidal anti-inflammatory agents
such as Motrin, Celebrex, and Vioxx, Tylenol, Advil, and Aspirin
*moderate pain (5-6) Codeine/Oxycodone
*severe pain (7-10) Morphine, Methadone, Fentnyl (Duragesic)
Methadone is underused to treat cancer-related pain. Methadone can be used as an alternative to morphine when there is morphine intolerance or allergy and when renal failure is present.
NSAIDS (non-steroidal anti-inflammatory drugs) such as Motrin, Aleeve, Celebrex, Vioxx are an excellent choice for mild to moderate pain.
NSAIDS combine well with narcotics and are useful especially for bone pain.
Steroids reduce inflammation and edema. They reduce liver pain when this results from acute stretching of its capsule. They usually reduce the headache and neurologic deficits associated with brain metastasis.
Other modalities include:
*Lidoderm Patch: to area of discomfort
*Intrathecal pump. These pumps can be used for patients who
cannot tolerate the side effects of high dose morphine. Prior to
placement of the pump, an epidural catheter is placed (usually
by anesthesia) and a trial of the chosen drug (usually morphine)
is given. The pump is placed subcutaneously (under the skin)
(usually by a Neurosurgeon). The pump is filled monthly.
The pump rate is controlled via an exterior device which sets and
alters its speed. This tool is generally brought by the device
company on an as needed basis; these pumps are best placed by
someone with experience.
*nerve block
*meditation; cognitive behavioral therapy, relaxation tapes
*TENS unit (transdermal electrical nerve stimulation)
*acupuncture
*massage
*support groups
*epidural block
*subcutaneous morphine
*Capsaicin cream (zostrix) this OTC product can be purchased as
a cream, a gel or a lotion. It is applied to the painful
area. It burns for the first several applications and many patients
refuse to give it an adequate trial.
Atypical pain (neuropathic pain) is often treated with antidepressants or antiepitectics. Local anesthetics such as the Lidoderm Patch may be helpful.
Tricyclic antidepressants are considered first-line systemic therapy for many neuropathic pain syndromes. There are no differences in the effectiveness of different tricyclic antidepressants. Thus, the appropriate choice of tricyclic antidepressant depends on each agent’s adverse-effect profile.
Current literature supports the use of tricyclic antidepressants for the management of postherpetic neuralgia and diabetic neuropathy.
Tricyclic antidepressants may be useful as adjunctive therapy for cancer-related neuropathic pain syndromes. Tricyclic antidepressants provide pain relief by independently providing analgesia specific for neuropathic pain, potentiating the effect of opioids, and improving underlying depression and insomnia. Although controlled trials using tricyclic antidepressants in-patients with cancer are limited and most data about tricyclic antidepressant analgesic effectiveness have been obtained with other chronic pain syndromes, these agents are accepted as adjunctive analgesics for cancer pain.
The adverse effects of tricyclic antidepressants are well known, but their prevalence rates vary by agent and patient group. In general, elderly patients experience a higher frequency of adverse effects. The most common adverse effects of tricyclic antidepressants are (constipation, dry mouth, blurred vision, cognitive changes, tachycardia, and urinary hesitation). Other common adverse effects are drop in blood pressure, falls, weight gain, and sedation.
Neuropathic pain generally responds more quickly than depression to tricyclic antidepressants (i.e., 3-10days vs 2-4 wks) and often with one-third to one-half the dosage administered for depression. Although the timing of administration will not effect a tricyclic antidepressant’s analgesic activity, bedtime administration is recommended to take advantage of the sedative activity. The tricyclic antidepressant dosage should depend on the degree of pain relief and emergence of adverse effects.
However, not all patients respond to tricyclic anti-depressant therapy within 10 days of initiation or with lower dosages. Some patients may require higher dosages and several weeks of treatment before efficacy is evident. Patients are often referred to specialty pain clinics because the tricyclic antidepressant dosage was not adequate. In addition, these drugs may be discontinued unnecessarily because of adverse effects caused by starting them at inappropriately high dosages, titrating the dosage upward too rapidly, or starting several drugs at one time. An adequate trial must be given before failure of a tricyclic antidepressant is determined.
Patients who stop abruptly a tricyclic antidepressant may experience withdrawal that manifests as a variety of clinical symptoms, which include (e.g., malaise, insomnia, drowsiness, anorexia, muscle aches, apathy, headache, mania, profuse sweating, irritability, abdominal pains, diarrhea, nausea, vivid and terrifying dreams, movement disorders). To avoid a withdrawal syndrome, a slow taper over 2-4 weeks (depending on the dosage) is recommended.
Traditionally, the most commonly administered antiepileptic drug for pain has been carbamazepine (Tegratol). Other antiepileptic drugs—including gabapentin (Neurontin), and lamotrigine, (Lamictal), may be more useful for painful neuropathies. Antiepileptic drugs are particularly effective in patients with sharp or burning pain.
Considerable variability in pain relief occurs with antiepileptic drugs. Some patients obtain relief with serum concentrations less than the therapeutic range for epilepsy, whereas others require much higher dosing.
Family members are usually in distress and may be unsure of how best to deal with the patient.
· Give the patient time to say goodbye to you
· Let him/her express his specific view of his/her “life story”
· say good-bye to the patient
· spend time with the patient
· be honest, but don’t “force the issue” if he/she is not ready to discuss death
· discuss the process of dying with your doctor or nurse
The “how long” question is always difficult. Sometimes death occurs “on schedule” but often the patient dies suddenly or “lingers on”. Ask your doctor or nurse about signs of impending death [coma, no urine output, slowed and uneven respirations, jaundice (yellow color), and low blood pressure].
Hospice is often a good choice for patients who want supportive care but for whom additional antineoplastic (antitumor) treatment would not be helpful or is not desired by the patient. Hospice is excellent for patients who want to die at home and who have a supportive family.
Some complications may lead to hospitalization; these include:
* family panic
* no urinary output
* fever
* congestion
* bleeding
* neurologic problems: seizures, spinal cord paralysis, and paralysis
of one side
* drawing of fluid from the lungs (thoracentesis) – may be done to ease
shortness of breath.
These potential problems should be discussed with the Hospice team before they occur so that everyone is comfortable with the “plan of action”.
Codes (CPR) are not appropriate for cancer patients unless there is an acute reversible problem in a patient who is doing well with the cancer. An example would be a 58-year-old man who has a lymphoma responding to treatment and who has an acute MI (heart attack) with an irregular heart beat.
People who die from their cancer do not benefit from a code. (CPR) They should not be coded! In a study of more than 300 VA patients who had a terminal cancer and who were coded, not one was discharged alive.
Codes are unpleasant experiences. They include inserting an endotrachial (breathing) tube and attachment to a ventilator; external compression is used to stimulate the heart. This often leads to rib fractures. Being coded is not a kind death or a death with dignity. Be sure you have a living will and be sure your family and your doctor understands that you want to be a “No Code”.