"We all must die. But if I can save someone from days of torture, that is what I feel is my great and ever new privilege. Pain is a more terrible lord of mankind than even death itself." Albert Schweitzer

• Studies show that a large proportion of persons with advanced disease die in severe pain. There are several reasons for this.
• The disease process that is causing death may be painful.
• Interventions to prolong life or treat disease may cause pain.
• Not all health professionals are trained in pain management.
• The prescribed medications may not be working well.
• Dying persons may not want to take pain medications because they fear constipation (a common side effect) or drowsiness.
• The health care provider, family, or dying person may fear addiction. (It is important to remember that addiction is a psychological state. Pain management professionals encourage us not to be concerned about addiction with any dying patient, even if she/he has an addiction history.)

Managing Physical Pain
Most physical pain can be controlled. No one should die in pain when the means to relieve it are available. All persons have the right to have their pain controlled.

Pain is Real. Always believe the person when they say they have pain and remember that each person is an individual and perceptions of pain differ.

Talking to the Doctor. People should expect their doctors and nurses to ask these questions about pain:

• Do you have pain?
• Where is it? What does it feel like: dull, stabbing, throbbing, etc.?
• How intense is the pain? Please rate it on a scale from 0 to 10, with 10 being the worst pain you've ever had
• What makes the pain better or worse?

The answers to these questions will help the doctor prescribe the right medicine in the right amount. Before the conversation is over, make sure that the dying person and his/her caregivers understand:

• What may be causing the pain.
  
• The recommended treatment.
• The possible side effects.
• What to do if there are questions or concerns.

  Getting the Most from Pain Medicines. Medicines should be given by the least invasive route, usually by mouth in either pill or liquid form. Sometimes a "patch" is placed on the skin. For best pain relief, medicines should be scheduled round-the-clock. This helps to keep pain under control and reduces "breakthrough" pain.

• Oral doses take effect in about 45 to 60 minutes.
• Pain medicines by intramuscular (IM) injection take effect in about 15-30 minutes. IM medications should generally be avoided in dying patients. Using this route is more invasive and the injection site must be rotated, increasing disruption to the patient. Lack of muscle tissue to administer the injection as the person loses weight is also a concern.
• Skin (transdermal) patches for pain take 12 hours to be at full strength and last for up to three days.
• The rectal route is commonly used to administer medications.
• Medicines can also be given under the tongue (sublingual) or under the upper lip or between the teeth and gums (buccal).
• If the oral or rectal routes are not available, pain medications can be given intravenously (IV) or by subcutaneous injection

Different Medications for Different Kinds of Pain. There are different approaches to pain control, depending on the kind of pain.

• Mild pain is usually treated with pain medicines taken every 3-4 hours. Regular dosing of any pain medicine is very important. If medicines are not given properly, the person's pain may get out of control. This may be difficult on caregivers at home who must wake up to give doses of short-acting medication around-the-clock.
  
• For severe pain, long-acting medicines do a much better job. Many are taken every 12 hours, which means the dying person and caregiver don't have to wake up for pills in the middle of the night. Steroids, antidepressants, anti-emetics (for nausea), anti-anxiety agents, or other medicines may be given in addition to pain medicine.
  
• Breakthrough pain" is pain that occurs intermittently. It is sometimes related to activity and sometimes occurs unpredictably. It is best for the patient to take short-acting pain medications the moment the breakthrough pain starts. If a person is taking breakthrough pain medication frequently, the long-acting pain medications might need to be increased. Taking frequent doses of breakthrough pain medications is not an indication of tolerance or addiction, but an indication that the pain has become more severe and/or the disease has progressed. In general, the goal is to prevent pain rather than to chase pain.

Keeping Track of Pain and Pain Medication. Caregivers should keep a list of the type and amounts of each pain medicine taken, the times given, and the pain ratings (on a scale from 0 to 10). This should be shared with the physician or nurse. If too many "rescue" doses are needed, this may indicate that the person is becoming tolerant to the medicine and may need a higher dose. This does not mean they are becoming addicted.

Common Side Effects

• Constipation. Laxatives and stool softeners are generally prescribed to relieve constipation.
• Dry mouth. If the person can take liquids by mouth, you can help keep the mouth moist with sips of water or ice chips.
• Nausea and vomiting. Anti-emetics may be prescribed to reduce nausea and vomiting. These medicines may cause drowsiness.
• Confusion and disorientation. Talk to the physician about trying another pain medication if the dying person wishes to be more alert and oriented. While our goal should be "zero pain at life's end," some people want to stay alert until the end and are willing to put up with some pain.
• Respiratory depression. Although respiratory depression is a common fear with strong pain medicines, if the medications are taken as instructed, this will not occur.

Common Fears
Fear of Addiction. The fear of becoming addicted to pain medicines such as morphine is common. However, addiction should not be a concern among persons who are dying and family members who care for them. Some people worry that round-the-clock dosing means that too much medicine is being taken. In reality, managing pain round-the-clock reduces the amount of pain medicine taken. This is because it can help prevent breakthrough pain and subsequent "rescue" doses. Round-the-clock dosing allows the dying person to carry on normal activities as long as possible. Stopping medicine abruptly because pain is better or for fear of addiction can cause the return of severe pain. Getting pain back under control can take a long time.

Belief that Pain May Be Deserved or Good. If people believe that pain is deserved, they may underreport pain or be reluctant to ask for pain relief. Others may interpret their physical pain as suffering, and refuse pain medication because they believe that suffering is related to salvation. In these cases, it may help the dying person to talk to a religious leader to clarify their faith's beliefs about physical pain, punishment, and salvation. Remember, only when physical pain is controlled can the issue of suffering truly be addressed.

Other Fears