Pain at the End of Life:
Pain is one of the most feared symptoms at the end of life. Most patients will experience pain as a terminal illness progresses. The inadequate treatment of cancer pain has been well documented (Agency for Health Care Policy and Research, 1994). The suffering caused by unrelieved pain touches all aspects of quality of life (activity, appetite, sleep) and can weaken an already fatigued person. Psychologically, unrelieved pain can create anxiety and depression, negatively affect relationships, and promote thoughts of suicide.
The standards emphasize pain assessment, patient and family education, continuity of care for symptom management, and evaluation of interventions.
Current barriers to pain management include:
• Lack of education,
• Lack of access to opioids,
• Fear of addiction, and
• Legislative issues.
Need for Education
Ferrell et al. (2000) noted that of 45,683 nursing text pages reviewed, 902 were related to pain at the end of life. The end-of-life content constituted 2% of text pages, while the pain content represented only 0.5%. The researchers concluded that more specific conent is needed to assist in educating students about pain and pain at the end of life.
The lack of access to opioids is another barrier to adequate pain relief. Patients may have difficulty affording medications. Some pharmacists, fearing crime, paperwork, and regulatory oversight, may not stock opioids or may keep limited quantities on hand. Some insurance companies limit the types of medications and the amount and frequency of renewal of analgesics.
The fear of addiction plays a role even at the end of life. Family members may be hesitant to assist the patient in pain management for fear of the social stigma of addiction. This causes needless pain and suffering.
Legislative issues play a role in the inadequate management of pain. Many states are enacting Intractable Pain Statutes. These laws aim to reduce physicians’ fear of civil or criminal liability or disciplinary action for aggressively managing pain. The tracking system by the Drug Enforcement Agency acts as a deterrent since opioids prescribed by physicians can be tracked. Some physicians fear that prescribing “too many” opioids could be interpreted as treating an addicted patient.
Pain management at the end of life differs little from general pain management. Patients still require comprehensive pain assessment and pain management, even though assessment may be hampered by confusion, delirium, or unconsciousness. Caregivers are taught to observe for signs of restlessness or facial expressions as a “proxy” indicator of pain.
Analgesic agents should be titrated to find the most effective dose and the best tolerated route. The nurse and family members should assess the effectiveness of the current pain therapy. If the pain is not relieved, a larger dose of medication may be necessary. If the pain continues, another medication may be needed or the patient should be given a different analgesic. The titration process requires frequent assessment to effectively manage pain. The analgesic agent or treatment should be appropriate for the type of pain. For example, neuropathic pain, usually described as burning, tingling, numbness, shooting, stabbing or electric, requires a different treatment approach compared to acute pain.
Non pharmacologic approaches, such as guided imagery and relaxation, can be used to decrease pain and help the patient cope. Careful patient positioning and environmental control are other methods to increase patient comfort.
Respiratory depression should be assessed because over time, patients become tolerant to this side effect. The rate, depth, and level of consciousness should be monitored to determine whether respiratory depression is occurring and requires treatment.
If respiratory depression is suspected, a decrease in the opioid dose may be indicated. Frequent stimulation to encourage deep breathing may be required until the opioid is metabolized. In the last few days of life the patient may become restless, which is an indicator of pain. The need to increase the opioid to provide pain relief and the respiratory effects of opioids are considered in decision making. However, comfort should be a priority in the case of a person who clearly is at the end of life, where cure is no longer the goal.
Side effects from analgesics must be managed as in other painful conditions. Tolerance to constipation is rare. Thus, a careful bowel regimen involving diet, bowel stimulants, stool softeners, and/or osmotic agents, must be instituted. Vigilance in the assessment, management, and treatment evaluation of other side effects is similar to that included in previous discussions. Careful assessment and management of pain at the end of life can make a “good” death possible. Education of health care providers and the family can help patients realize the goal of adequate pain relief throughout the dying process.