Pain and symptom control at the end of life

Pain and other symptoms related to your life-limiting illness can be managed effectively. Talk to your health professional and family about the symptoms you are experiencing. Your family is an important link between you and your doctor. Have a loved one report your pain if your illness prevents you from communicating. It is possible to manage pain and other symptoms so that you are comfortable.

Guidelines from the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) state that pain must be assessed and controlled for people in hospitals and nursing homes.¹

Physical pain

Many medicines are available to relieve pain. Your doctor will choose the easiest and most noninvasive form of medicine to treat your level of pain. Medicines taken by mouth (oral) are usually used first because they are easier to take and are usually less expensive than other forms of medicines. Nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin, acetaminophen, or ibuprofen, that can be purchased without a prescription help to reduce pain and swelling and may be used if your pain is not severe. It is important to "stay ahead" of your pain by taking your pain medicines on a regular schedule. Not routinely taking pain medicines is a common cause of ineffective pain management.

Pain that is not controlled by nonprescription medicines may need stronger forms of treatment. Pain medicines such as codeine, morphine, or fentanyl may be prescribed by your doctor. These medicines may be combined with others, such as nonsteroidal anti-inflammatory drugs or antidepressants, to manage your pain.

If you are unable to take pills or tablets, other forms can be prescribed. Liquid medicines are available if swallowing is a problem. Pain medicines can also be given as:²

• Rectal suppositories. Suppositories are available if you are having difficulty swallowing or are nauseated.
• A drop under the tongue (sublingual). Like nitroglycerin tablets or spray for heart pain, liquid forms of some narcotics, such as morphine and fentanyl, can be absorbed by blood vessels under the tongue. Sublingual medicines are given in very small amounts of liquid-usually only a few drops-and are an effective way to manage pain if you are having difficulty swallowing.
• Patches applied to the skin (transdermal patches). These patches release pain medicines, such as fentanyl, through the skin. The benefit of transdermal patches is that you will receive an appropriate amount of medicine constantly, which may keep your pain under better control than pain pills. Also, a new pain patch needs to be applied every 48 to 72 hours, while pain medicines are taken several times a day.
• An injection into the vein (intravenous, or IV). Your doctor may prescribe a medicine through a needle placed in a vein in your hand or chest if you have severe pain that is not controlled by oral, rectal, or transdermal medicines. IV medicine can be given as a one-time injection and repeated several times a day, or it can be given continuously in small amounts (a continuous IV infusion). Being attached to a continuous IV infusion does not mean that your activity will be limited: some people wear a small portable pump that delivers small amounts of medicine throughout the day.
• An injection into the space around the spinal nerves (epidural) or under the lining of the spinal cord (intrathecal). For severe pain, strong pain medicines-usually morphine or fentanyl-can be given as injections around the spine.

Injections of pain medicines into the muscle (intramuscular, or IM) are rarely used for pain associated with dying because the injections must be repeated regularly, which can become painful.

Many people who have pain caused by a life-limiting illness are concerned about becoming addicted to pain medicines. Addiction usually is not an issue in people with a terminal illness. If your pain or illness improves, it is possible to slowly remove the pain medicine without addiction occurring.

It is possible to use pain medicines to effectively manage your pain and keep it at a level that you find tolerable. However, it may not be possible to completely relieve your pain without making you sleepy. You might choose to have a certain amount of pain in order to be fully awake and alert. On the other hand, wakefulness may not be important to you and you may not be bothered by the sleepiness that accompanies some pain medicines.

The key to effective pain management is to take your pain medicine on a routine schedule, not "as needed." Never abruptly stop your pain medicines. Serious side effects and severe pain may result.

Talk to your doctor about methods of pain control without medicine. Complementary and alternative medicine therapies may provide pain relief and relaxation for some people. You may be able to complement conventional medical treatment with one of these therapies.

• Acupuncture
• Aromatherapy
• Biofeedback
• Chiropractic
• Guided imagery
• Healing touch
• Homeopathy
• Hydrotherapy
• Hypnosis
• Magnet therapy
• Massage
• Meditation
• Yoga

For more information about pain management, see the topic Chronic Pain.

Emotional distress

It is normal to experience emotional distress for a limited period of time as you learn to cope with your illness. However, depression lasting more than 2 weeks is not normal and should be reported to your doctor. Depression is treatable, even when facing a life-limiting illness. Antidepressants, as well as counseling, are available to manage the emotional suffering you may experience.

Talk to your doctor and family if you are experiencing emotional distress. Although grieving is a normal part of the dying process, do not feel that you must endure great emotional pain. Emotional suffering can intensify any physical pain you may be experiencing. It can also decrease your ability to work on important relationships and say good-bye to family and friends.

Other symptoms

You may experience other symptoms as your death nears. Talk to your doctor about what symptoms may develop. Symptoms such as nausea, fatigue, constipation, or shortness of breath can be managed effectively with medicines, diet changes, or oxygen therapy. Have a family member or friend help you describe your symptoms to your doctor or hospice worker. Keeping a journal may be a helpful way of keeping track of your various symptoms.

Citations

1. National Pharmaceutical Council (NPC), Joint Commission on Accreditation of Healthcare Organizations (JCAHO) (2001, with 2005 update). Pain: Current understanding of assessment, management, and treatments. Available online: http://www.npcnow.org/resources/PDFs/painmonograph.pdf and http://www.npcnow.org/resources/PDFs/PainAddendum.pdf.

2. American Pain Society (2003). Management of acute pain and cancer pain with analgesics. In Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain, 5th ed., pp. 3–49. Glenview, IL: American Pain Society.