Pain and other symptoms related to your life-limiting illness almost always can be managed effectively. Talk to your doctor 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. Usually it is possible to manage pain and other symptoms so that you are comfortable.
If you and your doctor are not able to control your pain, ask about seeing a pain management specialist. This is a doctor who finds ways to treat pain that won't go away.
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.
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. If your pain is not severe, medicines that help to reduce pain and swelling can be purchased without a prescription. These medicines include acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs), such as aspirin or ibuprofen. 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.
Pain medicines can be given by mouth, such as pills, or as drops placed under the tongue (sublingual). Medicines may be given by injection, by IV, or through patches placed on the skin (transdermal patches). Sometimes medicines are put into the space next to the spine (such as epidurals). Other medicines are put under the lining of the spinal cord (intrathecal).
In some cases, medicines can be given so you can get more medicine when you need it. This is called patient-controlled anesthesia, or PCA.
Many people who have pain caused by a life-limiting illness are concerned that taking opioid pain medicines will lead to opioid use disorder. Moderate to severe opioid use disorder is sometimes called addiction. This is usually not an issue in people with a terminal illness. If your pain or illness improves, your doctor will slowly lower the amount you are getting until your body no longer needs the medicine.
It is possible to use pain medicines to effectively manage your pain and keep it at a level that you find tolerable. But 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." But even with a routine schedule of pain medicine, there may be times when you have pain that is worse than normal. This is called "breakthrough pain." Talk with your doctor about medicines you should have on hand to be prepared for breakthrough pain. And always talk to your doctor before going off your pain medicine. Suddenly stopping pain medicine may cause serious side effects and severe pain.
Complementary medicine therapies
may also help with managing pain. These therapies include:
Before you try a complementary therapy, talk to your doctor about the possible value and potential side effects. Let your doctor know if you are already using any such therapies. Complementary therapies are not meant to take the place of standard medical treatment. But they may help ease symptoms and pain and improve your quality of life.
For more information about pain management, see the topic Chronic Pain.
It is normal to experience emotional distress for a limited period of time as you learn to cope with your illness. But 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 having. It can also decrease your ability to work on important relationships and say good-bye to family and friends.
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.