Physical symptoms in the last 2 to 3 months of life

Here is a list of some of the things a person goes through as death gets closer. We also try to give some tips on what can be done to manage these symptoms. Be sure to talk to your health care team about how you are doing. Don't assume "it's normal" to feel bad. There are often things that can be done to help you feel better.

Fatigue

Scott, age 60, with advanced cancer: "I feel like an engine running out of steam. It seems like I have just enough energy to do one or two small things, then it is gone. I have used up my supply for that day. I get tired of being tired. It is so frustrating!"

Fatigue is the feeling of being tired physically, mentally, and emotionally. Cancer-related fatigue is often defined as an unusual and ongoing sense of extreme tiredness. It tends to be more severe than the tiredness that most of us feel every day, which is short-term and gets better with rest. Many people with cancer feel that fatigue is the most distressing symptom of their disease. It is also a symptom that almost everyone with advanced cancer has.

What can you do about fatigue?

To manage fatigue, first, control the symptoms that make it worse. Then you can help prevent more fatigue by carefully balancing rest and activity.

Some of the symptoms that make fatigue worse include:

• Pain
• Nausea, vomiting, or both
• Diarrhea
• Constipation
• Sleep problems
• Poor nutrition
• Shortness of breath or trouble breathing
• Dehydration (not having enough fluid)

You can reduce fatigue by getting relief from these symptoms.

Fatigue is also made worse by anemia (low red blood cell count) or by imbalances in blood chemistry, and both of these things can be treated. Fatigue tends to be worse when you feel anxious, worried, sad, depressed, bored, and under-stimulated. Your health care team and your caregivers can help you find ways to manage the things that can make you feel more fatigued. Tell them how you feel, and try different techniques to see if they help you feel less tired.

For example, severe anemia (a drop in the red blood cell count) can be treated with drugs that cause the body to make more red blood cells or with blood transfusions. Since this can make you feel better, these treatments can still be used in the last months of life.

If you are hypothyroid (have low thyroid hormone levels), sometimes thyroid medicine can help with this kind of fatigue. And there are some medicines that can make you feel tired, too. You may need to talk with your health care team about switching to new ones or taking them at different times.

Sometimes simple changes in where and when you sleep can make fatigue better. But getting too much rest can actually make you feel worse and have less energy. Studies have shown that getting exercise at a level you can handle will improve your overall energy and help you stay mobile, strong, and flexible as long as possible.

Plan activities around the times you feel the best. Sit outside, listen to music, go for a ride in the car, spend time watching a meal being prepared -- distractions and stimulation of your senses will help ease fatigue.

Be safe. If you are unsteady on your feet, make sure you have help when walking. If you have severe fatigue, plan activity during the time you have the most energy. Some people find a bedside commode toilet chair helpful so they don't waste energy traveling to and from the bathroom. Plan rest stops when you are out of bed so that you can sit for awhile to regain energy. Take short rests during activity -- keep chairs close by. You may feel safer if you have a walker or wheelchair available. Your doctor or hospice team can help you get the equipment you need to be comfortable and safe.

Some people may find that they are afraid to go to sleep for fear that they won't wake up again. Again, this is a natural and very real fear. Needing more sleep is normal in the last few months of life. Withdrawing from people, turning inward, focusing on yourself, and talking less are also common at this time. Although some people want to surround themselves with friends and family, others want a quiet, peaceful environment. Listen to your body, tell people what you need, and save your energy for the things or people that are most important to you. Focusing on getting the most from each waking moment is a good way to redirect your worries and fears.

Pain

John, age 47: "I need the morphine to do the things I want to do. As long as I lay still in bed, I'm okay -- no pain, but I don't want to spend the rest of my life flat on my back in bed!"

People with cancer often fear pain more than anything else. But pain can be well controlled and managed in expert hands. It is important to know that pain does not have to be a part of dying. If you have pain, the most important thing you can do is talk to your health care or hospice team about it. They should understand that your pain is whatever you say it is. You should expect that your pain can and will be controlled. You and your team must work together to reduce suffering, relieve pain, and enhance your quality of life.

Describe your pain in as much detail as you can, including where it is, what it feels like, how long it lasts, when it started, what makes it better, and what makes it worse. Keeping a pain record of all of this may help. Often your health care team will ask you to describe your pain using a number from 0 to 10, with 10 being the worst pain you can imagine and 0 being no pain at all. Using this pain scale is also a helpful way to describe your response to pain relief measures.

Types of pain

Acute pain is severe, starts suddenly, and lasts a short time. It is often a signal that body tissue is being injured in some way. Acute pain often goes away when the injury heals.

Chronic pain, which can range from mild to severe, can last for a few weeks or may be ongoing. It can be from the cancer itself or from cancer treatment. The most common type of chronic pain in people with cancer is pain caused by cancer spreading to the bone. Another type of chronic pain is caused by a tumor pressing on organs or nerves. Having chronic pain can make you feel irritable, sleep poorly, decrease your appetite, and decrease your concentration, among many other things. But chronic pain can be well controlled

When people have chronic pain that is being treated with pain medicines, they can describe it: as persistent (continuous) pain and breakthrough (intermittent) pain. Persistent pain stays for long periods of time or almost all the time. Breakthrough pain is a brief and often severe flare of pain that can happen when a person is taking pain medicine regularly for persistent pain. Breakthrough pain typically comes on quickly, and lasts a short time.

Chronic pain is managed by taking long-acting pain medicines around the clock, whether or not you are having pain at the moment. This keeps your pain under control most of the time. But when pain starts to break through this layer of control, you need to take a dose of fast-acting pain medicine right away.

Types of pain medicines

The nurse or doctor will assess your pain and figure out the average level or degree of pain you are having. For mild pain (usually 1 to 3 on the scale of 0 to 10), pain medicines like acetaminophen (Tylenol^®) or nonsteroidal anti-inflammatory drugs (NSAIDs, such as aspirin, ibuprofen or naproxen) may be used. NSAIDs are drugs that treat pain as well as inflammation. It is best to use these medicines around the clock to treat the pain without interruption.

For moderate pain, or pain that is a 4 to 6 on the scale, opioids (morphine-like drugs) may be used. Examples of these drugs include hydrocodone (Vicodin^® or Lortab^®), oxycodone (Percocet^®), or fentanyl (Duragesic^®) patches. NSAIDs may also be used with the opioids. The dose of opioid will start low, be given around the clock, and then is increased as needed to control your pain.

If your pain is severe (a 7 to 10 on the 0 to 10 pain scale), stronger opioids will be started such as morphine or hydromorphone (Dilaudid^®). Long-acting, time-released forms of opioids like MSContin^® (a form of morphine) and Oxycontin^® (a form of oxycodone) work very well if used regularly. These long-acting drugs work by keeping your blood levels of the drug steady, which then keeps your pain leveled out and under control for long periods of time. Drops of morphine sulfate (Roxanol^®) can be given under the tongue to control breakthrough pain even if you have trouble swallowing.

Sometimes, very severe pain may be better controlled with a pain medicine pump which gives the drugs either under the skin (subcutaneously) or into a vein (intravenously, IV). If you need this type of pain control, you can still get it at home. You and your family will be taught how to use the pump, which is called a patient-controlled analgesia (or PCA) pump.

Some people need much higher doses of opioids than others. Do not be concerned if you seem to be taking large amounts of drugs. It has nothing to do with being unable to withstand pain, nor does it mean that you are a complainer. Some people need less, and some need more to keep pain in check.

Over time you may also find that you need higher doses of pain medicines because they aren't working as well as they once did. This is because the body becomes tolerant to the smaller doses of the same drugs, so the drug has less effect. Needing to increase your pain medicine does not mean that you are going to die soon. In fact, evidence has shown that poor pain relief hastens death. Sometimes other drugs such as antidepressants work well to help with nerve pain. Steroids and muscle relaxers may also be used to help with certain types of pain. These medicines are often given along with the opioid drugs.

Side effects of opioids

There are some side effects of opioids that can be quite troublesome. But many of these side effects can be treated or prevented. One of the most common side effects is drowsiness. With a gradual increase in medicine over time, drowsiness will decrease as the person adjusts to the medicine; but it may not go completely away. If the drowsiness is severe, sometimes other medicines are used during the day to help the patient stay awake.

Dry mouth is another side effect that can be annoying. Sips of water, hard candy, ice chips, or anything to moisten the mouth can help. Opioids can cause nausea or vomiting. Anti-nausea pills or suppositories can be given to prevent this.

Constipation is a very common side effect of opioids. Whenever you start to take an opioid, you probably will also be started on some type of bowel regimen which often includes a stool softener and laxative to prevent constipation.

Sometimes, a patient can become confused when taking an opioid, especially when it is first started and the dose is high. If this happens, there are ways to lessen that effect, like trying other medicines, lowering the dose, changing the frequency or trying medicines that improve confusion.

Generalized itching (called pruritis) is another common opioid side effect. This, too, can be treated with other drugs and often lessens or goes away over time without any treatment.

One thing you do not have to worry about while taking medicines for pain is addiction. When pain medicines are used for cancer pain, addiction is not an issue. Taking care of your pain is the most important thing.

If the patient is not able to talk about the pain they may be having, there are things caregivers can watch for that show pain or discomfort. Some signs of pain that they may see include:

• Noisy breathing -- labored, harsh, or rapid breaths
• Making pained sounds -- including groaning, moaning, or expressing hurt
• Facial expressions -- looking sad, tense, or frightened, frowning or crying
• Body language -- tension, clenched fists, knees pulled up, inflexibility, restlessness, or looking like they're trying to get away from the hurt area
• Body movement -- changing positions to get comfortable but can't

Being able to identify these things and give pain medicine as needed helps the caregiver take good care of the patient and keep him or her as comfortable as possible.

Other ways to help cancer pain

Medicines are not the only way to help your pain. There are other things you can do. Some people find distractions like music, movies, conversation, or games help. Using heat, cold, or massage on a painful area can help. Relaxation exercises and meditation can help lessen the pain and lower anxiety for some people.

For most people with cancer pain these measures alone are not enough to control pain. But, they may help improve comfort when used along with pain medicines.

Appetite changes

Margie, age 34: "I just can't eat, but I know I have to eat to live. It upsets my husband and my kids when I don't…it scares me too sometimes. I try, but I can't do it."

As time goes on your body may seem to be slowing down. Maybe you're feeling more tired or maybe the pain is getting worse. You may become more withdrawn and find yourself losing weight and eating less. This is a normal part of the last months of life, but it may be the start of a battle between you and your loved ones. You are moving less, have less energy, less appetite, and less desire to eat. Food no longer smells good or tastes good. You seem to become full more quickly and are interested in fewer foods. While this is going on, the cancer cells may compete with the normal cells in your body for the nutrients that you do manage to digest.

Avoid family food battles

It can be very upsetting to your family to see you eating less. For them, your interest in food may represent your interest in life. By refusing food, it may seem to your family that you are choosing to shorten your life. They may take this personally and think that you want to leave them or are trying to hasten your death -- even unconsciously.

It is important that you and your loved ones talk about the issues around eating. The last few months of your life should not be filled with battles around food. Loss of appetite and being unable to eat (together called anorexia) happens to more than 8 out of 10 of cancer patients before death. It is normal in the last months of life for parts of your body to start slowing down and eventually shut down. When you feel like eating less, it is not a sign that you want to leave life or your family. It is just a normal part of the dying process. Explain to your loved ones that you deeply appreciate all their efforts to feed you and that you understand their attempts are acts of love. You are not rejecting their love, but your body is limiting what it needs at this time.

Your body is going through changes that have a direct effect on your appetite. Changes in taste and smell, stomach and bowel changes, shortness of breath, nausea, vomiting, diarrhea, constipation -- these are just a few of the things that make it harder to eat. Drug side effects, stress, and spiritual distress are also possible causes of poor appetite.

Some causes can be managed with medical treatment. For example, nutritional support can be given in the form of tips on how to get the most out of each bite you take or through the use of supplemental drinks or shakes. There are also medicines that can stimulate your appetite, decrease nausea, and help food move through your stomach more quickly. You might be surprised to find that you are able to eat more when joining others at a table. You may be able to take in small frequent meals or snacks during the day instead of trying to eat full meals 3 times a day.

It is important to recognize changes in appetite so that you can get help when it's needed. Talk to your medical team about how much you've been eating and whether or not you need to do something about it.

Problems breathing

Henry, age 78: "I was struggling to breathe. I thought the attack would never end and that was how I was going to die!"

Even thinking about breathing problems can seem scary. Dyspnea is the term used for an unpleasant awareness of breathing. It is a very common symptom in people with advanced cancer. It is another symptom that can be addressed and well-managed at the end of life.

You may feel that you are short of breath or you need to breathe faster and harder than normal. You might feel as if you have liquid in your lungs and it makes you want to cough. Often these symptoms come and go. If they are not recognized, they can't be treated. Tell your health care team about any breathing problems you have so that you can get early help to manage them.

There are a number of things that can be done to help with breathing problems. Sitting up, propping yourself up on pillows, or leaning over a table may make it easier for you to breathe. Sometimes oxygen coming through a small tube you wear under your nose will relieve most of your symptoms. Opioid pain medicines can work well to decrease shortness of breath and relax your breathing.

If there’s fluid in your lungs, medicines can be given to slow the fluid buildup. Sometimes opening a window or having a fan in the room will help you feel less hungry for air. You can be taught breathing and relaxation techniques to use when breathing is hard. Medicines to reduce anxiety may help you worry less about shortness of breath.

Many people with cancer fear that this problem will get worse as the disease progresses. There are steps to manage each change in your condition and treat each problem. Just like pain, you should not have to feel as if you have no control over your breathing problems. Talk to your health care or hospice team about your symptoms and they will treat your specific problems.

Last breaths

Many people have certain changes in their breathing patterns at the very end of their life. Noisy, moist breathing or severe congestion often happens in the hours before death. This is very distressing for the family because it often looks and sounds like the person is drowning. Most often, this symptom happens while the patient is unconscious and not aware of it. But if the patient is alert, it can be very frightening.

There are many causes of this congestion. Excess mucus, trouble swallowing, decreased cough reflex, weakness, fatigue, and resting flat in bed are just a few reasons for it. Treatment can help to manage this congestion. There are drugs that can be used to help dry up the liquids. Changing position usually helps -- especially sitting up.

Knowing about this possible change in breathing can help you and your family identify, report, and treat it as quickly as possible. Being prepared for this possibility includes good teaching and reassurance from your health care team. Ask them what to expect and tell them what you want them to do about it.