MANAGEMENT OF PAIN AND OTHER SYMPTOMS

Many people who have come to terms with their own mortality still fear the possibility of a painful death. Almost all pain can be controlled to some extent with the wide range of available treatments. When properly treated, most patients gain significant relief from pain.

Pain is frequently multidimensional, with psychosocial and spiritual components. Other symptoms, distress, or psychosocial or spiritual concerns can interact with and exacerbate physical pain or impact the effectiveness of pain treatment (Harding et al., 2020). Pain not only hurts, but it is also physically and emotionally debilitating. Severe chronic pain can cause depression, anxiety, fear, diminished appetite, impaired sleep, irritability, inability to focus, and sometimes thoughts of suicide. When pain is relieved, many of these symptoms disappear. The patient then can focus on other important end-of-life issues, such as unfinished business with family and friends or spiritual or religious concerns.

The patient’s preferences should define the goal of pain management. Some patients will choose to be completely pain-free, even if it means sedation. Others will choose only to control pain enough so that they can continue to function with alertness. If pain becomes severe at any time, but particularly in the last days or hours of life, it should be treated around the clock (Harding et al., 2020).

Patients have a right to relief from pain. The Joint Commission requires that hospitals and other healthcare facilities regularly assess, monitor, manage, and document pain and response to treatments in all patients. Those facilities that fail to do so risk losing accreditation. Until all health professionals learn the principles of pain management explicit to palliative care, however, patients will continue to suffer needlessly.

Inadequate education of health professionals in pain management is only one reason why patients suffer. Another is general mistrust about the use of narcotic analgesics and worry about addiction or overdosing on these medications. Patients may also consider requests for pain medication as “giving up” or “giving in” to their disease. Clinicians can correct these myths and misinformation and reassure patients that managing their pain is fundamental to improving their quality of life.

Although addiction is not a concern when treating dying patients, tolerance to and a chemical dependence on opioids may develop over time. If tolerance to particular drugs occurs, it will be necessary to increase the dosage or change medications to gain relief. If dependence develops and the patient needs to be taken off the drug, it should be done gradually in order to avoid withdrawal symptoms.

Assessing Pain

Effective pain management begins with assessment of the patient’s pain. Because pain is a subjective experience, it is important to ask the patient to describe the pain in terms of location, intensity, and character. There are a number of pain assessment tools available; healthcare practitioners should consult their agency/facility protocols.

A thorough pain assessment includes:

  • Onset
  • Mechanism of injury or etiology of pain, if identifiable
  • Location/distribution
  • Duration
  • Course or temporal pattern
  • Character and quality of the pain
  • Aggravating/provoking factors
  • Alleviating factors
  • Associated symptoms
  • Severity/intensity
  • Impact on function, sleep, mood
  • Barriers to pain assessment
    (Harding et al., 2020)

Pain perception varies from person to person, depending on age, culture, emotional status, past experiences with pain, and the source and meaning of the pain. Some cultures dictate stoicism when experiencing pain, which may cause people not to admit pain or request medication. Men are more likely to “tough it out” because of cultural and gender attitudes.

Older adults may have a higher pain threshold than younger people or children due to normal age-related changes in neurophysiology. Because of their higher pain threshold, however, older patients are at risk for undertreatment of pain. They may also have multiple chronic diseases and sources of pain as well as complex medication regimens that increase the risk of drug-drug and drug-disease interactions.

Visual, hearing, motor, and cognitive impairments as well as language differences can impede communication about patients’ pain. Anxiety and depression can exacerbate the pain experience, as can fatigue and sleeplessness. Untreated pain can then cause further sleeplessness, which leads to more fatigue, setting up a cycle of suffering.

Knowing the source of pain can be a relief in itself, particularly if the patient has imagined a worst-case scenario and the source of the pain turns out to be a minor, correctable condition. The meaning of pain also affects the patient’s perception of it.

Pain should be reassessed at least as often as the vital signs are taken and management efficacy reassessed when patients are transferred from home to any new healthcare facility (Harding et al., 2020).

Pain Medications

Medications can make a drastic difference in the lives of those suffering with pain, and they comprise an important aspect to end-of-life care in many instances. (A detailed description of pain medications is beyond the scope of this course, but the following provides basic information.)

The World Health Organization (WHO) has developed a three-step analgesic “ladder” for cancer pain relief in adults, and this approach can also be used in palliative and end-of-life pain management. If pain occurs, there should be prompt oral administration of drugs in the following order:

  1. Nonopioids (aspirin and acetaminophen)
  2. Then, as necessary, mild opioids (codeine)
  3. Then strong opioids (e.g., morphine) until the patient is free of pain

To calm fears and anxiety, additional drugs (adjuvants) should be used. To maintain freedom from pain, drugs should be given “by the clock” (i.e., every 3–6 hours) rather than “on demand.”

This three-step approach of administering the right drug in the right dose at the right time is inexpensive and 80%–90% effective (Anekar & Cascella, 2022).

Graphic showing three steps in medicating pain at end of life

Three-step analgesic ladder (Source: National Center for Biotechnology Information.)

DRUG ADMINISTRATION

When a patient is unable to swallow an oral medication, less invasive routes (rectal, sublingual, or transdermal) should be offered first. Parenteral methods should be used only when simpler, less-demanding, and less-costly methods are inappropriate, ineffective, or unacceptable to the patient. Intravenous (IV) or subcutaneous doses should be chosen over intramuscular (IM) injections, as they are less painful and absorb at a comparable rate. In general, assessing the patient’s response to several different oral opioids is advisable before abandoning the oral route in favor of anesthetic, neurosurgical, or other invasive approaches (Harding et al., 2020).

Oral transmucosal fentanyl citrate is used for the relief of breakthrough pain. The lipid solubility of fentanyl allows rapid onset of pain relief. Fentanyl can also be given in the form of an intranasal spray, topical skin patch, or a buccal tablet for patients who are unable to swallow pills.

End-of-life patients may experience agitation. Lorazepam (Ativan) is an anxiolytic/sedative that may be taken as an injection, intravenously, orally, or sublingually (McCuistion et al., 2021).

PROPER SAFEGUARDING OF NARCOTICS

Many end-of-life patients receiving palliative care or hospice at home possess large amounts of narcotics and other controlled substances to alleviate pain and control anxiety. While these are essential to keep the patient comfortable, abuse and disposal of such medications may pose problems. Improper disposal of these substances by flushing down the toilet or into sinks may introduce them into the groundwater, drinking water supplies, or eventually the tissue of aquatic organisms.

Instead, unused drugs may be given to collectors who are registered with the Drug Enforcement Administration. Authorized collection sites may be retail pharmacies, hospitals, clinic pharmacies, and law enforcement locations. Some may offer mail-back programs or collection receptacles (“drop-boxes”).

Equally important is the need to safeguard against the use of controlled substances in the home by anyone other than the patient for whom the medications were ordered, including children and pets (U.S. FDA, 2019).

CASE

Isabella is a 76-year-old widow with an inoperable astrocytoma in the parietal lobe of her brain. She has undergone palliative radiation treatments in the hospital and has been discharged to home to be cared for by her 54-year-old daughter, Eileen, and a home health aide who comes every other day. Her physician has determined that she likely has less than six months to live and has designated that she is to be cared for as a home hospice patient.

Although her tumor has shrunk in size since the radiation therapy, Isabella still complains of severe headaches, up to 7 or 8 on the 0–10 pain scale. Her doctor has ordered ibuprofen with fentanyl patches for the pain. Isabella and Eileen are instructed to keep a log indicating when patches are applied and removed and how disposal of used patches is managed. Isabella is forgetful and occasionally neglects to remove the previous patch when she puts on the new one, every 72 hours. When this happens, she becomes confused, agitated, and even more forgetful. Also, she does not consistently maintain the log.

Eileen’s 28-year-old son, Paul, has a history of substance abuse and has been in rehab twice for narcotic addiction. Lately he has been taking his grandmother’s fentanyl patches when he visits, telling himself they’re not good for Isabella. The home health aide notes that the count is off and notifies Eileen. She also notifies her agency supervisor. After reviewing all the circumstances (Isabella’s forgetfulness, the incomplete log, the presence in the house of a person with a known history of substance abuse), the supervisor instructs Eileen to lock up the supply of patches, remove and apply them to Isabella herself in order to prevent overdosing, and lock up the used patches as well.

ADDRESSING SIDE EFFECTS

The use of opioids affords effective pain relief to most patients. Like all drugs, however, they have side effects, some of which can be uncomfortable or even painful in themselves. They include drowsiness, nausea and vomiting, dyspnea, dry mouth, and constipation. Some side effects ameliorate after a few days, and most can be prevented or treated successfully.

Drowsiness

Drowsiness frequently occurs at the beginning of opioid therapy, not only from drug action on the brain but also because the patient may have been sleep-deprived due to unrelieved pain. Once normal sleep patterns resume, the drowsiness generally lessens.

Nausea and Vomiting

Nausea and vomiting can usually be controlled once the source of the problem is identified. For patients who cannot tolerate morphine or NSAIDs, substitution of a different opioid or a sustained-release formulation may relieve these symptoms. Vomiting related to chemotherapy can be treated with serotonin receptor antagonists such as ondansetron, granisetron, or dolasetron.

If nausea and vomiting are related to disturbances of the labyrinth—such as motion sickness, vertigo, or migraine—use of antihistamines and anticholinergics (meclizine, dimenhydrinate, or transdermal scopolamine) may offer relief.

In some patients, nausea and vomiting can be triggered by smells, sights, or sounds; this is referred to as psychogenic or anticipatory vomiting. For these patients, benzodiazepines (anti-anxiety drugs such as lorazepam and buspar of the azapirone chemical class) may provide relief. Benzodiazepines can interfere with short-term memory, especially in older patients, or cause confusion in those who are already cognitively impaired.

Vomiting may also be related to increased intracranial pressure (e.g., from central nervous system tumors). These patients may benefit from a combination of corticosteroids and serotonin receptor antagonists.

Constipation may trigger nausea and vomiting in patients with advanced disease. Stimulant laxatives such as senna derivatives can promote gut emptying and offer relief.

Dyspnea

Dyspnea (shortness of breath, difficult breathing) is common among dying patients, who may report feelings of tightness in the chest or suffocation. Dyspnea may be an initial effect of opioid therapy or may result from other causes, including pneumonia, pulmonary embolism, pleural effusion, bronchospasm, tracheal obstruction, neuromuscular disease, restricted movement of the chest or abdominal walls, cardiac ischemia, congestive heart failure, superior vena cava syndrome, or severe anemia. Treatment is determined by the diagnosis.

Three basic approaches are used to treat dyspnea in the dying patient: oxygen, opioids, and anti-anxiety medications. Nonpharmacologic methods such as meditation or guided imagery may also be effective. Although most patients are not hypoxic, supplemental oxygen may be helpful unless the cannula or face mask cannot be tolerated. Fresh outdoor air or a breeze from a fan may also afford relief. Low-dose immediate-release morphine, in either oral or buccal formulations, also can be effective.

Constipation

Preventive measures against constipation should begin at the same time as opioid therapy. Normal bowel function varies from person to person, so it is essential to establish what the patient considers normal and whether they are having any difficulty with bowel movements. Preventive or treatment measures can then be tailored accordingly. Untreated constipation can cause bloating, abdominal pain, nausea and vomiting, overflow incontinence, fecal impaction, or bowel obstruction.

First-line therapy for constipation includes stool softeners and stimulant laxatives such as prune juice or senna derivatives. If these prove insufficient to maintain or restore normal bowel function, osmotic laxatives such as magnesium salts, sorbitol, or lactulose may be added.

A lubricant stimulant such as mineral oil may be used if the patient is able to swallow. However, mineral oil should not be given to patients who have difficulty swallowing, because aspirating mineral oil can cause pneumonia. Mixing the oil with orange juice or root beer makes it more palatable. It is given when the patient’s stomach is empty to avoid interference with fat-soluble vitamins.

If the patient is ambulatory, increased activity can help promote bowel function. Simple measures such as increased fluid intake, more dietary fiber (if tolerated), a regular toileting schedule, privacy, and if the patient is bedfast, use of a bedside commode rather than a bedpan can be helpful. Peristalsis is generally strongest after eating, especially in the early morning.

Dry Mouth

Pain medications and many other pharmaceuticals (e.g., antidepressants, anticholinergics) can dry the lips and oral mucous membranes, leading to cracking, ulceration, and bleeding. Patients on oxygen therapy and those who have chosen to forgo artificial hydration and nutrition may also experience dry mouth. When increasing fluid intake is not an option, lubricants such as liquid vitamin E or petroleum jelly applied to the lips can help prevent cracking. Mouth swabs moistened with water or alcohol-free mouthwash can be used to relieve discomfort and to clean teeth, gums, and tongue. Products containing alcohol are avoided or limited because they can further dry the mouth (McCuistion et al., 2021).

Nonpharmacologic Pain-Relief Measures

Not all pain relief comes through medications. Other methods, some of them simple, may increase patient comfort and well-being and augment the pain-relieving effects of drugs. For example, massage or application of heat or cold may reduce musculoskeletal pain. Repositioning the patient can sometimes relieve pain. Physical therapy may also be beneficial.

Adjuvant therapies for intractable pain include radiation therapy (to shrink tumors or relieve bone pain), radiofrequency ablation for bone pain, surgery to debulk a tumor, nerve blocks, or intrathecal pumps to deliver large doses of opioids without systemic sedative effects.

Complementary therapies such as acupuncture, guided imagery, biofeedback, hypnosis, progressive muscle relaxation (e.g., listening to audiotapes of relaxation techniques), meditation, distraction, and music therapy can also be helpful, not only in relieving pain but also in relieving emotional and psychological distress. Psychotherapy, particularly for patients suffering from depression, can have a positive effect on patients’ perception of pain and response to pain medications. Support groups and pastoral counseling may also be helpful to some patients by reducing psychological distress (Harding et al., 2020).

Treating Other End-of-Life Symptoms

DELIRIUM

Delirium is a condition marked by changes in clinical and mental status and has been understood as prevalent and dangerous, particularly among elderly or frail patients. It is the most common neuropsychiatric disorder at the end of life. It is defined as a disorder of global cerebral dysfunction characterized by disordered awareness, attention, and cognition.

Disturbances in sleep-wake cycles and psychomotor activity, delusions or hallucinations, insomnia, and emotional lability may all occur. The agitation, moaning, and grimacing of delirium may be misinterpreted as signs of pain. The person may also exhibit mood swings, disorientation to time and place, and uncharacteristic speech. The most significant elements of delirium are inattention and broad fluctuations of symptoms. These are not major components of any other psychiatric illness of late life.

Delirium can create distress for both patient and caregivers, interfering with patient comfort and meaningful interaction with family members.

Many episodes of delirium can be effectively treated and, in some cases, prevented. Delayed treatment may result in terminal restlessness. Risk factors for delirium include cognitive impairment, sleep deprivation, medications such as narcotics or anti-anxiety drugs, hypoxia, fever, brain tumors or swelling, immobility, visual impairment, hearing impairment, and dehydration. Early identification and interventions to address these risk factors can significantly reduce the number and duration of episodes of delirium in older patients (Harding et al., 2020). For example, the patient who normally wears glasses and/or a hearing aid may become confused without these appliances.

The principle of treatment of delirium is to determine and treat the reversible causes of delirium and to mitigate other causes. Determining one cause may be difficult and delay treatment. Delirium may be related to use of medications such as opioids. Changing to a slightly less potent opioid may be effective. Neuroleptic medications (antipsychotics) such as haloperidol are recommended to reduce agitation in patients with hyperactive delirium; however, they may cause drug-induced Parkinsonism and motor restlessness. Evaluating the clinical need for opiates, anticholinergics, benzodiazepines, and dopaminergics is critical to identify whether any CNS active medications can be discontinued (Harding et al., 2020).

FEVER

Some patients experience a significant fever, which may be evidence of an infection or the body’s response to chemotherapy or radiation therapy. At the very end of life, no effort is made to discover the source of the fever, as it will not be treated and obtaining cultures may be painful for the patient. However, a fever is expected to cause the patient discomfort. Acetaminophen may be ordered for the patient as an antipyretic. If the patient is unable to swallow pills, the acetaminophen may be given via suppository.

DRY EYES

Patients in a comatose or obtunded state may not fully close their eyes, allowing the uncomfortable possibility of dried corneas. Artificial tears (polyvinyl alcohol 1.4%) may be ordered to be administered every hour around the clock to lubricate the eyes, particularly when the eyes are not fully closed.

CASE

Mr. Willoughby is an 83-year-old hospice patient admitted to the hospital since his family is no longer able to care for him at home. He is unresponsive to all stimuli and unable to swallow. His respirations are 10–12 per minute; no other vital signs are being taken. The physician’s orders are as follows:

  • DNAR
  • Comfort care
  • Turn every 2 hours
  • Mouth care every 4 hours
  • Lip balm every 8 hours
  • Family may visit at all hours

Ordered medications include:

  • Roxanol (immediate release oral morphine sulfate solution) 20 mg/ml concentration, with a dosage of 0.5–1 ml every hour sublingually as needed for signs of pain
  • Dulcolax suppository per rectum every day for constipation
  • Artificial tears, 1 drop in each eye every hour
  • Tylenol suppository, 650 mg per rectum every 4 hours as needed for fever or “hot skin”
  • Ativan, 1 mg SL every 4 hours as needed for agitation

Luanne, his nurse, explains to the family that comfort care status doesn’t mean Mr. Willoughby will not be cared for. She explains that every usual nursing care activity in the hospital, such as collecting vital signs, is considered in terms of the discomfort it may cause the patient and the possible benefits that may be derived. Luanne explains the reasons for each of the physician’s orders and how they help keep the patient comfortable.

Family members express their wish to help and are encouraged to participate in Mr. Willoughby’s care. Luanne demonstrates how to turn the patient and support him with pillows. She tells them that gentle massage to the extremities and frequent application of lip balm to the patient’s mouth will help to keep him comfortable. However, family members are not allowed to administer medications in the hospital, not even over-the-counter remedies.