Physical Changes as You Near the End of Life

This is written for the person with cancer, but it can be helpful to the people who care for, love, and support someone with advanced cancer, too. This information may help you find answers to your questions and concerns during this very sensitive and difficult time.

These are some things a person may experience during the last stage of life, usually as death gets closer. It's important to know that each person's experience is different. It’s not always normal to feel bad, and there are often things that can be done to help you feel better. We also give some tips on how to manage these symptoms.

Communication with the people who are helping to care for you is key. Be sure to check in and tell your health care team how you are doing. If it's difficult or tiring for you to communicate, be sure your loved one or caregiver can help you to pass on information your health care team needs to know.

Fatigue

Fatigue is the feeling of being tired and not being able to do things at your usual pace. This tiredness can affect you physically, mentally, and emotionally. Cancer-related fatigue is often defined as an unusual and ongoing sense of extreme tiredness that doesn’t get better with rest. Almost everyone with advanced cancer has this symptom.

What can you do about fatigue?

The first step in helping to manage fatigue is recognizing and controlling any symptoms that make it worse, like pain, nausea, neuropathy, or constipation. Another step is to try to prevent more fatigue by carefully balancing rest and activity. If you feel tired, stop and rest. 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 things to see if they help you feel less tired.

Some medicines can make you feel tired, too. They may be needed, but you may want to talk with your health care team to find out if switching to new ones or taking them at different times may help. You might even be able to stop taking certain medicines that aren’t helping or aren’t needed any more.

Keep safe when you’re active. If you’re unsteady on your feet, make sure you have help when walking. You may feel safer if you have a walker or wheelchair. Your doctor or hospice team can help you get the equipment you need to be comfortable and safe. If you're shaky, don't use sharp utensils or other things that might cause injury. If you're able to drive, be careful to not drive when you are feeling fatigue.

Plan activities around the times you feel the best and have the most energy. 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 may help ease fatigue.

Some people find a bedside commode or toilet chair helps, so they don’t waste energy traveling to and from the bathroom. Plan rest periods when you are out of bed so that you can sit to regain energy. Take short rests during activity. Keep chairs close by so you can sit down right away without using extra energy.

Fatigue can also make you sleep more. This can be troubling for some people who might be afraid they won’t wake up again. Needing more sleep is often normal in the last stage of life. It's also common to withdraw from people, turn inward, focus on yourself, and talk. Although some people want to surround themselves with friends and family, others may want a quiet, peaceful environment. Listen to your body, be sure to tell people what you need, and try to 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.

You can learn more in Cancer-related Fatigue.

Pain

People with cancer often have pain, and often fear it will get worse. Cancer pain is considered to be chronic pain because it usually lasts longer than pain caused by other problems.

Pain can make you feel irritable, sleep poorly, decrease your appetite, and decrease your concentration, among many other things. While pain can't always be completely relieved, pain can be controlled and managed. Pain does not have to be a part of dying. If you have pain, it’s very important to track it, report it, and ask for help in controlling it.

You and your health care team must work together to reduce any suffering due to pain and enhance your quality of life. You should talk to them about your pain and develop a pain control plan together. Then, they’ll need you to tell them how well your pain control plan is working. Talk to them at every visit, and call in between visits if something is not working or your pain gets worse. Don’t be discouraged if your medicines must be tweaked a few times to get the best pain control with the fewest side effects. Your health care team understands that pain is different for everyone, and your pain is whatever you say it is. You should expect that your pain can and will be controlled. If it isn't being controlled successfully, you may want to ask your team to refer you to a pain specialist.

When you report your pain, it's best to describe it 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
• What makes it worse

Keeping a record of all of this in a pain diary 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, doses, and forms of pain medicines

The nurse or doctor will assess your pain and figure out the average level or degree of pain you have. There are a lot of different types, forms, and doses of pain medicines available.

The types of pain medicines range from acetaminophen (Tylenol^®) to non-steroidal anti-inflammatories (NSAIDs) to stronger drugs called narcotics, such as opioids (morphine-like drugs). Sometimes other drugs may be used. For instance, certain anti-depressants or anti-convulsants (seizure control drugs) often work well to help with nerve pain. Steroids may be used to help with certain types of pain, such as that caused by swelling or inflammation. These medicines are often given along with the opioid drugs.

There are also different doses of each medicine. Some people need less, and some need more to keep pain controlled. Some may find they need to increase their dose over time. Needing larger doses of drugs has nothing to do with being unable to withstand pain, nor does it mean that you are a complainer. The body can become tolerant to a drug, and you may need to increase the dose because of that tolerance.

There are also many forms of pain medicine, such as long-acting and short or fast-acting drugs. For example, there are time-released forms of opioids that are long-acting and taken at certain times around the clock. These long-acting drugs work by keeping your blood levels of the drug steady, which helps keep your pain under control for long periods of time. Short or fast-acting rescue drugs can be used to quickly control "breakthrough pain" that may happen in between the doses of long-acting medicines. It’s very common for a person with cancer to take more than one drug to manage chronic and breakthrough pain.

Pain medicines also can be given in many different ways. Pills are the most common type. Injections or IV pain medications may be used, and sometimes a pump can be used to constantly give certain pain medicines. There are also patches that stick to the skin, lozenges that don’t have to be swallowed, drops that go under the tongue, and even rectal suppositories that can be used when needed. Not every drug comes in every form, and not every form may be helpful to every person. Work together with your health care team to find out which will work best for your pain control plan.

Other ways to help cancer pain

With certain types of pain, doctors can do special procedures such as nerve blocks, targeted radiation treatments, or even surgical procedures to control pain. Sometimes physical therapy may help. If your pain isn’t well controlled, your doctor might also refer you to an expert in pain management. The pain specialist might have some different options to help you.

Medicines and medical procedures are not the only ways to help lessen 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. Keep in mind that 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.

Signs that a person is in pain

If you are a caregiver and your loved one is not able to talk about the pain they may be having, there are things you can watch for that show pain or discomfort. Signs of pain 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 will help you keep your loved one as comfortable as possible.

You can learn more in Cancer Pain.

Appetite changes

As time goes on your body may seem to be slowing down. Maybe you find yourself eating less and losing weight. This is often experienced by people with advanced cancer, and other who are in the last stage of life.

Your body is going through changes that have a direct effect on your appetite. Changes in taste and smell, dry mouth, 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. You might feel less hungry because you’re probably moving less, have less energy, and your digestive system is slowed. It’s normal in the last stage of life for parts of your body to start slowing down. Maybe you feel full more quickly or are interested in fewer types of foods. When you eat less, the cancer cells may compete with the normal cells in your body for the nutrients that you do manage to take in and digest. This can all lead to weight loss.

What can you do about appetite changes?

It’s 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 you need to do something about it. For example:

• Some causes of poor appetite can be managed with medical treatment. There are medicines that can help stimulate your appetite, decrease nausea, and help food move through your stomach more quickly.
• A nutritionist might be able to offer tips on how to get the most out of each bite you take.
• Supplemental drinks or shakes can sometimes help you get needed nutrition more easily.
• You might find that you’re able to eat more when others are at the table.
• You might find it easier to eat small frequent meals or snacks during the day instead of trying to eat full meals 3 times a day.

These measures may work for some, but they won’t help most people who are very close to the end of life. At later stages, these efforts can even make the person feel worse. (See What to Expect When a Person With Cancer Is Nearing Death.)

Avoid family food battles

It can be very upsetting to family if you start eating less. Some of them may think your interest in food represents your interest in life. By refusing food or not eating much, it may seem to your family that you’re choosing to shorten your life or that you will starve.

It’s important that you and your loved ones talk about issues around eating. The last stage of your life doesn't have to be filled with arguments about food. Again, loss of appetite and being unable to eat happens to many people with advanced cancer. When you feel like eating less, it’s not a sign that you want to leave life or your family. It’s often a normal part of the processes that can happen in the last stage of life. If you're getting into arguments with your loved ones, try to let them know that you appreciate their concern and understand their attempts are acts of love. You can let them know you’re not rejecting their love, but your body is limiting what it needs at this time.

You can learn more in Eating Problems.

Problems breathing

Just thinking about breathing problems can be scary. Trouble breathing and/or shortness of breath is common in people with advanced cancer, some more than others. It might not go away completely, but there are ways it can be managed.

Sometimes breathing problems make you feel short of breath, like you need to take breaths more often, or that you are breathing faster and harder than normal. You might feel like you have fluid or congestion in your throat or lungs and it makes you want to cough. Often these symptoms come and go. Tell your health care team if you’re having any problems breathing so you can get help with them.

A number of things can be done that may help make it easier for you to breathe:

• Try sitting up, propping yourself up on pillows, or leaning over a table
• 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 build-up
• Sometimes opening a window, a cooler room temperature, or having a fan blowing on your face 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 breathing will get worse as the disease progresses. Remember that every person's situation is different, and it's very hard to know exactly what will happen.

Also remember there are steps to help manage each change in your condition. Talking to your health care team and reporting what you're feeling will let them know how they can help.

See Shortness of Breath to learn more.