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Pain: Cancer and End of Life

Persis Mary Hamilton, RN, CNS, MS, EdD

Wild Iris Medical Education is an approved provider of continuing education by the American Occupational Therapy Association (AOTA), Provider #3313. Courses are accepted by the NBCOT Certificate Renewal program. For information specific to this course, click here.

To many people, the word cancer means pain and death. Sadly, there is much to support their point of view. One study found that 30% of clients experience pain at the time of diagnosis, 30% to 50% experience pain while undergoing therapy, and 70% to 90% experience pain as cancer advances and overcomes their defenses (Portenoy & Lesage, 1999). Yet, a decade ago, the World Health Organization (WHO) reported that 90% of cancer clients could receive adequate pain relief with relatively simple drug therapy then available (WHO, 1996). Since then, even more pain-relieving treatments have been developed. To achieve the goal of providing adequate pain relief for people with cancer and for all who are dying, healthcare providers need to understand the causes and types of cancer pain, the impact of pain, and effective strategies to manage pain.

CANCER PAIN, ITS CAUSES AND TYPES

Cancer pain is complex, interactive, and ever-changing. It comes from two general sources: the cancer itself, and its various treatments. As cancer cells invade healthy tissue, visceral and somatic nociceptors sense tissue damage and send impulses to the brain, where the individual perceives pain. Such pain may be localized at the cancer site or referred to a remote area. Not only do sensory impulses inform the person of tissue injury, they initiate the release of neuromodulators that produce localized inflammation and generate more pain. As nervous tissue is infiltrated by tumor growth or damaged by its treatment, neuropathic pain results, often persisting long after the initial insult. In addition to physical pain, people with cancer and their families experience the emotional pain of anticipatory grief and the stress and fear of cancer and its treatment. Thus, cancer causes many kinds of pain: nociceptor, neuropathic, psychogenic, and secondary:

• Nociceptor pain is pain that is transmitted over intact visceral and somatic nerve fibers from damaged tissue caused by cancerous invasion of bodily tissue, radiation therapy, and chemotherapy. Nociceptor pain may be sharp and stabbing, throbbing and aching, or constant or dull.
• Neuropathic pain is pain that is transmitted over damaged nerve fibers due to the abnormal processing of sensory information and is caused by infiltration of nervous tissue by cancer cells, radiation, and chemotherapy. Neuropathic pain is burning, searing, tingling, and migratory.
• Psychogenic pain is caused by the negative emotions that result from pain, including anger, grief, fear, and revulsion, or a combination thereof (eg, blame, a mixture of anger and revulsion). Such pain is anxiety-producing and may cause depression.
• Secondary pain is caused by space-consuming tumors, as when brain tumors increase intracranial pressure or tumors compress the spinal cord.

PAIN DUE TO THE CANCER ITSELF

Pain caused by cancer depends on the site and extent of growth. Often tumors produce clusters of symptoms, or syndromes. Table 6-1 lists some common cancer pain syndromes and a description of the typical pain they create.

TABLE 6-1

CANCER PAIN SYNDROMES

Cancer pain syndromes	Typical pain
Peripheral nerve syndromes	Constant, burning pain with dysesthesia in area of sensory loss; radiating, and often unilateral
Cranial neuropathies	Severe head pain with cranial nerve dysfunction; metastasis to skull base and leptomeningeal area
Vertebra of spine	Constant dull, aching pain; may be relieved by standing or exacerbated by recumbency
Bone: metastatic or primary	Aching, deep, intense pain, usually worse at night; pain may be referred; associated muscle spasm and stabbing pain with nerve involvement
Viscera	Pain in related area: pancreatic pain is relentless, boring, mid-epigastric, radiating through to the mid-back
Plexopathies Cervical plexus Brachial plexus (Pancoast’s syndrome) Lumbosacral plexus	Aching and diffuse in shoulder girdle and radiating Heaviness and tightness in upper arm, radiating Aching, pressure-like, may be referred to abdomen, buttocks, lower back, or legs

PAIN DUE TO TREATMENT OF CANCER

Modern medicine treats cancer with potent chemicals, radiation, and surgery, each of which can cause pain; they destroy healthy cells as well as cancer cells, and their side effects also cause pain. Some side effects include incisional pain from surgery, emesis from chemotherapy, and stomatitis from radiation. Sweeder (2002) estimated that 20% to 25% of the pain of cancer clients is directly related to its treatment. Table 6-2 lists some common syndromes that result from treatment modalities and the typical pain and complications that result.

TABLE 6-2

PAIN SYNDROMES CAUSED BY CANCER THERAPY

SYNDROMES	TYPICAL PAIN AND COMPLICATIONS
Postoperative Pain Syndromes	Incision pain; sharp and burning
Mastectomy	Tight, constricting, burning in back of arm, axilla, over chest, worse on movement; tingling in distribution of peripheral nerves; loss of sensation
Axillary lymphectomy	Numbness and aching due to edema
Thoracotomy	Referred pain to arm and chest, sensory loss around scar; reflex sympathetic dystrophy may develop
Amputation	Phantom pain in place of missing limb or body part.
Radical neck dissection	Tight burning sensation in the neck and numbness or prickly sensation in the neck; dysesthesia in area of sensory loss
Oophorectomy	Surgical menopause, hot flashes
Postradiation Pain Syndromes	Aching pain, similar to postoperative and tumor pain; radiation may cause new neurogenic tumors and soft-tissue fibrosis
Myelopathy	Aching or shooting pain in certain muscles
Necrosis of bone	Aching, prickling; may be localized or referred
Mucositis and stomatitis	Ulcers of the mucus membrane; raw, burning sensation; eating and drinking made painful.
Postchemotherapy Pain Syndromes	Some drugs (vesicants) seriously damage tissue if they leak outside blood vessels (extravasation); most cause nausea and vomiting
Mucositis and stomatitis	Painful ulcers of the mucous membrane are the most common complication of chemotherapy, especially from methotrexate, doxorubicin, daunorubicin, bleomycin, etoposide, fluorouracil, and dactinomycin; appears about 10 days after beginning of treatment; pain on eating or drinking
Aseptic necrosis of the bone	Jaw pain; intermittent calf pain and/or prickling in hands or feet.
Painful polyneuropathy	May feel pain in several places at once
Steroid pseudorheumatism	Aching pain in joints
Chemical menopause for estrogen-positive breast cancer	Hot flashes from tamoxifen, an anti-estrogen
Pain due to tests and devices	Sharp, piercing pain from needle sticks; abdominal distention from cleansing enemas and colonoscopies; discomfort from exposure; squeezing from machines; burning from extravasation of IV drugs

In addition to pain, some of the more troubling physical side effects of cancer and its treatment are emesis, constipation, pneumonia, and pressure sores.

EMESIS

Emesis is such a common complication of chemotherapy that oncology nurses have identified four types:

• Acute emesis occurs within the first 24 hours of the initial dose; however, emesis can be controlled in 70% to 90% of clients with anti-emetic drugs (Roux, 2002).
• Delayed emesis occurs after 24 hours of receiving chemotherapy and may continue for up to 7 days. Once emesis begins, it is especially difficult to control; hence, prophylactic anti-emetic medications are recommended.
• Anticipatory emesis is a conditioned response caused by the sights, sounds, and smells of chemotherapy. It occurs prior to a repeat course of therapy; however, it may not occur if anti-emetic drugs are given during the first course of chemotherapy.
• Breakthrough emesis occurs in spite of standard anti-emetic therapy and may require additional anti-emetic drugs on a rescue basis.

The vomiting center in the medulla oblongata in the brain coordinates the act of vomiting from several pathways, including the neurotransmitter receptors in the gastrointestinal tract, vagal and spinal sympathetic nerves, and chemical stimuli in the viscera and blood ( Haughney, 2004). Vomiting is controlled by a complex interaction between serotonin and dopamine receptor sites and neurotransmitters. The most effective way to prevent emesis is to antagonize serotonin receptors, using selective 5-HT receptor antagonists such as ondansetron (Zofran), granisetron ( Kyril), and dolasetron (Anzemet). Available in both oral and injectable form, these drugs block serotonin receptors in the gastrointestinal tract and are reported to prevent emesis in 70% to 90% of clients (Roux, 2002).

CONSTIPATION

Constipation is a common cause of pain in cancer clients, not only as a side effect of opioid pain medications, but also because of immobility and inadequate fluid and fiber intake. To prevent these complications, oncology nurses recommend a bowel care program that includes the following:

• Fluid: Sufficient daily intake of water from food or drink to prevent dehydration.
• Fiber: Generous daily intake of foods high in fiber (cellulose), such as green leafy vegetables, fruit, bran, and beans.
• Laxatives commonly used:
• Saline: magnesium citrate, milk of magnesia (leaches water from body to the stool).
• Stimulant (irritant: senna, cascara, phenolphthalein, castor oil (induce peristalsis).
• Emollient: mineral oil (lubricate intestine and prevent escape of water from stool).
• Hyperosmotic: lactulose, sorbitol, glycerin (draws water to the stool).
• Bulk-forming: phylum, polycarbophil, methylcellulose (retains water, increasing stool volume).
• Stool softeners: docusate sodium, calcium, and potassium salts (draws water and fats to the stool)

While saline and mineral oil laxatives may be needed occasionally, they are not recommended on a regular basis. Bulk-forming and stool softening laxatives can be used safely for extended periods of time. A practical protocol to manage opioid-induced constipation in cancer clients was developed by Robinson and colleagues. It combines senna (a stimulant) and docusate sodium (a stool softener), titrating the dose to the client’s needs (Robinson CB, 2000). Other management suggestions include:

• Exercise: Although clients may be fatigued and in pain, walking— even for short distances and for a brief period of time—stimulates bowel activity.
• Regular routine: Many people have an urge to defecate soon after their first meal of the day. If they attend to this urge, they are more likely to establish a regular bowel evacuation routine. Although everyone who eats food must defecate, not everyone follows a 24-hour schedule.
• Keeping track: While obsessing about bowel movements is useless, constipation is painful and can lead to an impaction and serious obstruction. For this reason, clients and caregivers need to keep track of the frequency, consistency, and amount of stool and prevent constipation before it becomes a problem.

PNEUMONIA

Pneumonia is not usually associated with pain, or cancer. However, when debilitated cancer clients undergo surgery or chemotherapy, they are less likely to cough and to breathe deeply. When mucus collects in the airways, pathogens grow, and pneumonia results. To prevent this painful and life-threatening complication, nurses encourage mobility, hydration, deep breathing, and use of incentive spirometers or balloon blowing.

PRESSURE SORES

Pressure sores (decubiti) are painful erosions of the skin caused by cell death due to inadequate oxygen and nutrients. These erosions expose nerves and invite infection. Because weakened cancer clients are ill-equipped to fight infection, prevention is essential. This requires constant monitoring, frequent turning, protection from trauma, and relief of pressure. If decubiti develop, they must be treated promptly and vigorously.

CARING FOR CANCER CLIENTS AND THEIR FAMILIES

Cancer pain is more than a physical symptom. It is a reminder of ones mortality and a harbinger of death. It interferes with normal routines, degrades the quality of life, and robs one of rest, creativity, joy, and peace. Cancer pain adds stress and worry to its sufferers and friends and family. For this reason, healthcare professionals:

• Take pain seriously, recognizing that only the person in pain knows how it feels.
• Provide information and resources for pain control.
• Communicate with genuineness, accurate empathy, and nonpossessive warmth.
• Encourage sufferers to share their feelings and network with other survivors.
• Respect culture norms and wishes of sufferers, maximizing their control of pain.
• Encourage release of energy through joy-producing activities.
• Monitor pain medications, effectiveness, and adverse effects.
• Suggest clients keep a pain-relief record, including date, time, pain rating, medication amount, side effects, and comments ( Haylock & Curtiss, 1997)

ASSESSING AND TREATING CANCER PAIN

The management of cancer-related pain is complicated when sufferers have pre-existing chronic pain, a history of substance abuse, or are near death. For this reason accurate assessment is essential, especially of “new pain.” Nurses may find the acronym OLDCART a useful tool as they assess pain:

O = Onset
L = Location (possibly multiple sites)
D = Duration (how long it lasts and whether it is constant or intermittent)
C = Character (sharp, shooting, dull, aching, cramping, squeezing)
A = Aggravating factors (moving, walking, sitting, turning, chewing, breathing, urinating, defecating, and swallowing)
R = Relieving factors (activities or drugs that make pain better or worse)
T = Treatment (drug or nondrug interventions) (Bednash & Ferrell, 2002)

Cancer is treated with both pharmacologic and nonpharmacologic therapies. Pharmacologic remedies include non-opioid analgesics, opioid analgesics, and co-analgesics or adjuvants. Unlike postoperative or post-trauma pain, cancer pain may go on for months and years, add to existing chronic pain, and become more intense as the client undergoes treatment or as the cancer invades other tissues.

To guide caregivers, the American Pain Society identified the thirteen principles regarding the use of analgesics to control pain:

1. Individualize the route, dosage, and schedule of analgesics medications.
2. Administer analgesics on a regular basis if pain is present most of the day.
3. Know the dose and time course of several opioid analgesic preparations:
• Ask client about prior experience with certain drugs.
• Give preference to long-acting, sustained-release opioids such as OxyContin, which provides up to 12 hours of analgesia; Kadian and Avinza, controlled-release morphine preparations which provide up to 24 hours of pain relief, and transdermal fentanyl, which provides up to 3 days of pain relief.
• Avoid the adverse effects of emesis by giving anti-emetics.
• Rotate opioids to compensate for tolerance.
• Use rapid-onset opioids when necessary.
• Use concentrated dosage forms when injection volume must be minimized.
4. Give infants and children adequate opioid doses.
5. Follow clients closely, particularly when beginning or changing analgesics.
6. When changing to a new opioid or a different route, first use equi-analgesic doses to estimate the new dose. Then, modify the estimate based on the clinical situation and the specific drugs.
7. Recognize and treat side effects, such as sedation, constipation, nausea, itching, respiratory depression, by doing the following:
• Change the dose or route of the same drug to maintain constant blood levels.
• Try different opioids analgesics.
• Consider multi-drug and multi-modal therapy.
• Add another drug that counteracts the adverse effects, such as a stimulant for sedation.
• Use an administration route that minimizes drug concentrations at the site producing the side effect, such as intraspinal instead of oral when appropriate.
8. Do not use meperidine (Demerol) because of neurotoxicity risk, or mixed agonist-antagonists (Talwin) because of psychotomimetic effects.
9. Do not use placebos to assess the nature of pain.
10. Monitor for the development of tolerance and treat appropriately. Increased pain may be due to progressive disease, new pathology, skipped doses, or other causes.
11. Expect physical dependence and prevent withdrawal.
12. Do not diagnose clients with opioid addiction based only on presence of opioid dependence.
13. Be alert to the psychological state of the client. (American Pain Society, 2005)

PAIN MANAGEMENT AT THE END OF LIFE

The focus of pain management at the end of life is to provide support and comfort, rather than cure, for the dying and those they leave behind. To do this, nurses need to understand the concepts, guidelines, ethical concerns, and legal issues associated with the end of life.

Concepts of Care

PALLIATIVE CARE

Palliative care is the active, total care of clients with a goal of providing comfort rather than cure (WHO, 2000). It addresses pain control, symptom management, and social, emotional, spiritual, and financial concerns of people at the end of life.

HOSPICE

Cicely Saunders was a nurse, social worker, and physician when in 1968 she opened St. Christopher’s Hospice in England to care for people who were dying alone and in pain. She developed the concept of enhancing the quality of life through palliative care rather than curative treatment. Hospice came to the United States in the 1970s as a philosophy rather than a place, and since that time has spread throughout the nation, addressing the needs of people whose life is ending.

SUFFERING

Suffering is a highly personal experience that depends on the meaning an event, such as an illness or loss. One can suffer without physical pain and one can have physical pain and not necessarily suffer. The founder of the modern hospice movement described suffering as “total pain,” an experience of changing self-perception, fear of physical distress and dying, concerns about relationships, changing self-perception, and memory of other person’s suffering (Panke, 2002).

QUALITY OF LIFE

Quality refers to a measure or a grade of something. Quality of life refers to the state or condition of ones’ being. If people are physically comfortable and emotionally satisfied, we say their quality of life is good. If they are in pain, under stress, alone, sad, or distressed, as many people are, we say their quality of life is poor. The goal of hospice and palliative care is to enhance the quality of life of dying clients.

Pain Control Guidelines

To help nurses provide better care to individuals in pain and at the end of life, Paice and Fine (2001) suggest the following guidelines:

1. Perform a basic assessment of the client’s pain and evaluate its effects on the client’s quality of life. Titrate analgesics according to goals of care, pain, severity, need for supplemental analgesics, severity of adverse side effects, measurements of functional abilities (such as interaction with others, mobility, and sleep), emotional state, and effects of pain on quality of life.
2. Use sustained-release formulations and around-the-clock dosing for continuous relief of pain.
3. Treat breakthrough pain with immediate-release formulations.
4. Monitor the client’s status frequently, especially during dose titration.
5. Anticipate adverse effects and prevent or treat them as necessary.
6. Be aware of possible drug-drug and drug-disease interactions.
7. Reassess pain regularly. Determine what level of pain is acceptable to the client. If pain is not relieved adequately, don’t give up. Consult resources outside your institution, including nursing colleagues and experts in related disciplines.
8. Differentiate pain from other symptoms such as delirium or multi-system failure.
9. Use sedation selectively to relieve intractable pain when other pain-relieving measures have failed and when there is a do-not-resuscitate (DNR) prescription. Reduce sedation when appropriate.
10. If the client is unable to communicate verbally, consult with caregivers and use nonverbal behaviors to evaluate pain.

ETHICAL AND LEGAL ISSUES AT THE END OF LIFE

Ethical and legal issues at the end of life care are often intertwined (Scanlon 2003). This is especially true because of the pain that frequently accompanies terminal illnesses, as with cancer and HIV-AIDS. Therefore, it is vital for all healthcare facilities to anticipate potential conflicts and see that advance directives are in place. When they are not, healthcare professionals may believe they are legally required to continue medically provided nutrition and hydration even when a client no longer benefits.

To resolve this conflict, all fifty states and the District of Columbia have enacted statutes to comply with the Client Self Determination Act (Omnibus Budget Reconciliation Act of 1990). The federal law requires that all healthcare institutions receiving Medicare and Medicaid funding must inform clients in writing about their right under state law to accept or refuse medical or surgical treatment before they become incapacitated. Legal forms called advance directives facilitate this legislation. Instructions and forms for each state are available free at the website of Partnership for Caring: www.partnershipforcaring.org/advance/adconfirm.php.

There are two basic types of advance directives: living wills (treatment directives) and durable power of attorney for healthcare (appointment directives) as follows:

• Living will: written document that directs treatment in accord with the client’s wishes.
• Durable power of attorney for healthcare (medical power of attorney for healthcare, healthcare proxy): written document that designates a spokesperson (agent, proxy, surrogate) to represent the person in decision making. (http://www.partnershipforcaring.org/advance/adconfirm.php, 2002)

Despite legislation, Last Acts found that only 15% to 20% of the general population had an advance directive. They also found that decision making was skewed by circumstances at the moment and that nurses play a vital role in helping families come to terms with the impending death of a loved one because nurses are the first to recognize signs of approaching death (Partnership for Caring, 2002).

Communication strategies nurses can use to help terminally ill clients and their families make decisions about end-of-life care were suggested by Norton and Talerico (2001):

• Use clear, unambiguous words, such as dying and death.
• Do not use words like hope because of the many meanings that word can convey.
• Collaborate with other providers to repeat evidence of failing health to clients and their families.

Ethical principles guide nurses at every stage of life, including its end. In particular, nurses follow the basic ethical principles of respect for human life and dignity, beneficence, autonomy, honesty, and justice. In sum, pain management at its best provides maximum pain relief and minimal harm to people at every stage of life, including its end.

Posted November 18, 2005

Expires November 1, 2009

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