Pain and other symptoms related to your life-limiting
illness 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. 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. 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.
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. 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.
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:
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. 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
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.