At the end of life, having your symptoms well controlled is essential. To accomplish this, it's important to have your symptoms managed by experts in pain and end-of-life care. For some people, the health care team that has treated them during the course of illness will also be able to manage symptoms at the end of life. For others, this will not prove to be the best choice. If your cancer health care team is not expert in end-of-life symptom care, they may suggest other experts, such as those who provide hospice care. Ideally, in either case, your oncology care team will remain supportive of you throughout your continuing care, whether or not they are directly managing your symptoms.

Symptoms at the end of life are different for each person, and you should not assume that you will have pain or any other particular symptom. While each person's need for symptom management is individual, what we all have in common is the right to expert symptom control and a reasonable quality of life. Below is a discussion of some of the more common symptoms experienced at the end of life.

Pain

Pain should be controlled by medication and other techniques at all times, day and night, seven days a week. Under no circumstances should you be expected to tolerate significant pain, and never accept the idea that "nothing more can be done." In managing pain, there is always more that can be done, and patients and their caregivers must insist on expert management.

There are few key things to keep in mind in managing pain:

• Expert management of pain makes a big difference. People who are expert in pain management can make you comfortable faster, more consistently and more easily than can people without particular pain management training and skill.
  
  
• Don't think your pain can't be controlled if an initial medication or even a combination doesn't work right away. There are many medications and combinations of medications and techniques that are successfully used to manage pain, and your pain expert will work with you to find the right answers for you.
  
  
• Be willing to help manage your pain by consistently taking the medications provided. Starting and then stopping because there is no pain, and then and re-starting medication again when the pain returns makes pain harder to control.
  
  
• Being in pain is not only physically unpleasant, but unrelieved pain can contribute to depression and a much-impaired quality of life.
  
  
• A common myth that prevents some people from taking needed opioid pain medicine is that "taking opioids hastens death." This is not true. Many people take opioids successfully for pain management for years.
  
  
• You may need to find a balance of medication and discomfort that is acceptable to you. Most people being medicated may have some traces of discomfort, but this can be minimized, never letting it overwhelm the ability to live your life.
  
  
• Side effects of taking opioids that some (not all!) people experience when they begin these medications can all be managed. Knowing about them can prevent alarm if they occur — but you should let your pain management expert know right away if these happen:
  
  
  • Constipation — almost every person taking opioid medications experiences constipation. That's why your health care team should start you on a bowel regimen (a plan for managing constipation) at the same time as you begin taking opioids. If this doesn't happen, ask for it.
    
    
  • Drowsiness — some people experience drowsiness for a few days when they begin taking opioid pain medication. For some people who have been in pain, the sheer relief of pain enables them to relax and get more sleep than they have in some time. Usually drowsiness goes away within a few days. If it does not, your pain management expert can help with this problem.
    
    
  • Nausea — some people experience nausea when they first begin taking opioids. This usually only lasts for a few days, and can be managed by anti-nausea medication or by selecting a different opioid to use. Your pain management expert will help with this.
    
    
  • Muscle twitching (myoclonus) — this can be managed by adjusting the dose of medication in some cases, or by adding a muscle relaxing medication.
    
    
  • Confusion/delirium — some people react to certain opioids this way. This symptom usually means another pain medication should be used.

There are also excellent non-medical approaches to pain management that should be considered. Learn about these in the section on Treating Pain: Non-Medical Treatments to Help Relieve Pain.

For family caregivers: If your loved one is not able to communicate clearly, you can be of great help to your health care team in assessing the presence and intensity of your family member's pain. Discuss the nonverbal signs of pain with the health care team so they can assist you in reporting what you see and hear. Some of the more common signs of the presence of pain in a person who cannot communicate include restlessness and agitation, grimacing, moaning or crying, decreased movement, and irritability. Also, the absence of outward signs of being in pain does not mean that your loved one has no pain. The health care team should be encouraged to check for pain frequently.

For more information on managing pain at the end of life, please see Managing Cancer Pain: Cancer Pain at the End of Life.

Shortness of Breath (Dyspnea)

This symptom — a feeling of breathlessness, or difficulty in getting enough air — is not uncommon in cancer patients near the end of life.

Causes of shortness of breath may vary, and the first step your health care team will take is to make an effort to determine the cause in your case, and treat that. If you are resting, and still have the feeling of not getting enough air, contact your health care team at once, or have a family caregiver do so.

Helping yourself. Shortness of breath often causes the person experiencing the problem to feel anxious and even frightened. Your health care team will help manage your shortness of breath — and there are also steps you and your family caregiver can do to help.

• Sit up, rather than attempting to lie down. When you sleep, use a recliner to sleep propped up on pillows.
  
  
• Have a fan or air conditioner running, to ensure maximum air circulation. If possible, an open window helps, too.
  
  
• Do the best you can to relax. Muscle tension adds to feelings of breathlessness. Try listening to music you love, watching videos or other quiet but enjoyable activities.
  
  
• If the air in your room or home is very dry, consider using a humidifier to make it more moist. Moist air is generally more comfortable than very dry air when you are short of breath.
  
  
• When you are short of breath, you'll tend to breathe through your mouth. Make an effort to keep your mouth and throat moist, sucking on hard candy perhaps, or using a spray bottle of water moistened swabs.
  
  
• Minimize talking and other activities, if these add to your feelings of breathlessness.

Your health care provider will examine you and discuss what is happening. While treatment for each person is individualized, there are effective treatments to help your shortness of breath. If fluid in your lungs or chest cavity is causing the problem, your care providers may recommend a surgical procedure using a thin hollow needle to drain the fluid from the area where it is concentrating (thoracentesis or pleurocentisis). This is not recommended for all people, and will depend on other factors of your condition. If heavy secretions in your lungs are obstructing your airway, there are treatments for this, as well. Some people with very low red blood cell counts experience shortness of breath, and this can be treated by medications or a blood transfusion, if this is appropriate for you.

Shortness of breath is often treated by opioid medications, the same medications that are often used to treat pain. If you have not been prescribed opioids at the time shortness of breath begins, then a small amount of these medications can help. If you are already taking opioids, it is likely that your dose may be altered to help with this additional need. Finally, you may be advised to use small amounts of oxygen (it will be ordered by your physician and delivered by a medical equipment company to you).

If shortness of breath is a persistent and serious problem for you, then you and your health care team should talk about the possible need for increased sedation in the final hours of your life, so you don't suffer severe breathlessness. This kind of sedation can best be managed by an experienced hospice nurse who is present and with you. If sedation like this is likely to be needed (discuss this ahead of time with your physician), your family and others likely to be with you should be aware of it. This can be helpful in avoiding last-minute panicked calls to emergency medical services when doing so will not help to prolong life.

Nausea & Vomiting

If you are experiencing nausea and vomiting, your health care team will work to determine the cause and plan your treatment accordingly. It is almost always possible to control this unpleasant side effect.

Possible causes of nausea include gastrointestinal irritation, such as an ulcer; constipation; motion sickness; bowel obstruction; and combinations of medications. For each of these causes, steps can be taken to help. For the most part, medications will be given to ease nausea, and these will be tailored to match the suspected cause of the problem. Many of these medications can be given orally, but if this is not appropriate due to the nausea, injections or suppositories can be used, as well.

For more information about this side effect, please see the section on Nausea and Vomiting.

Constipation

Constipation is a common problem for many patients at the end of life, and is generally treatable. The causes include the use of opioid medications without an effective treatment to head off constipation (almost all patients who take opioids will have constipation and need to start a bowel regimen with the medication at the beginning), lack of physical activity, and perhaps drinking and eating very little.

Your health care team can assess the cause of your constipation and take steps to relive it. Being constipated is very uncomfortable at any stage of life, and it is worth asking for assistance to relieve it. You'll be more comfortable once this is done. For more information, please see the section on Constipation.

Bowel Obstruction

Bowel obstruction can occur in cancer patients, particularly those who have gastrointestinal cancers like colon or stomach cancers, and gynecologic cancers in women.

Causes of obstruction at the end of life include growth of the cancer, scarring from earlier surgeries (adhesions), hernias and perhaps side effects from radiation.

Treatment will often depend on two factors — first, how close you are to the end of life, and second, whether you are able to withstand surgery to correct the obstruction. If surgery to relieve the obstruction is not possible, there are other methods your health care team can use to make you more comfortable. For more information, please see the section on Bowel Obstruction.

Lack of Appetite

At the end of life, people with cancer sometimes feel little need to eat or drink. Many factors contribute to this, from medical causes, such as the cancer itself or side effects like bowel obstruction, to a gradual slowing-down of bodily functions and a lack of need for nutrition.

The health care team should initially assess the problem to see if there are treatable causes for lack of interest in eating — such as pain, gastrointestinal problems like constipation and bowel obstruction, and mouth discomfort. If these can be treated, they should be.

If lack of appetite cannot be treated, it's time for caregivers to stop pressuring the dying person to eat. This can be difficult, because for many family caregivers, providing food and drink has been a mainstay of showing love and providing care. Instead, the dying person should choose what, and how much, to eat. Caregivers can make suggestions, of course, but gently.

Confusion

Confusion, when you are very ill, can be caused by a number of things, among them medications, infection, changes in caregivers, and lack of sleep/rest, to name a few.

An additional factor in confusion, especially in older people, is a declining ability to hear and see what is going on around them. If possible, make use of any equipment the patient uses regularly to help orient, such as hearing aids and eyeglasses.

As always, it's best if the health care team works with you early to determine the cause of confusion and take corrective actions. Also, caregivers should be prepared to assist a dying person experiencing confusion and disorientation with functions like moving about a room, using the bathroom, and at times, self-care like washing, taking medicine, eating and drinking.

For many people, confusion is mild — such as confusing the time of day, day of the week, and so forth. While this is frustrating, confusion of this kind can be eased by having a family caregiver provide information and assist with orientation.

Confusion can become more serious, and may involve seeing visions, imagining conversations with people who are not present, and so forth. For some patients, these experiences can be comforting. For others, they are frightening — and the health care team should be made aware of the situation so they can help control this process.

Any medication that produces change in a person's behavior, such as slurred speech, increased mental confusion, or abrupt personality change, needs immediate attention from the health care team.

In general, at the end of life, dying people may spend more and more time drifting in and out of sleep. While this may sometimes contribute to confusion during waking periods, this is not usually stressful and may not require intervention by family or health care team members.

For caregivers: If your loved one is experiencing confusion, there are some positive steps you can take, including:

• Be prepared to let the dying person know where he is, what time of day it is, etc. as often as there is confusion. Patience in this task is important. It can also help to keep a clock in sight of the dying person, to orient time of day.
  
  
• Speak with the health care team often to let them know about symptoms of confusion you see, such as slurred speech, seeing visions, restlessness, etc.
  
  
• Don't ever assume your loved one cannot hear you or others speak when you or others are present, even if he or she seems to be asleep or even unconscious.
  
  
• Try not to rush your loved one, or hurry responses. Confusion slows down reaction time, so it may take longer for her or him to respond to you.
  
  
• If possible, provide your family member with aids usually used to see or hear, such as eyeglasses and hearing aids.
  
  
• If possible, help your loved one sleep at night and remain awake during the day. This helps with overall sense of time and place.
  
  
• It's probably best to avoid leaving the dying person alone in an entirely dark room, even if he is asleep. Waking in total darkness can be frightening and disorienting.
  
  
• Some people are very sensitive to being startled or touched unexpectedly. Always letting your loved one know what you intend to do, such as turn or lift him.
  
  
• Let visitors know that your loved one is experiencing confusion before they actually see and talk with him.

Restlessness & Delirium

These symptoms are not unusual at the end of life, and can happen together or separately.

Restlessness can have physical causes such as pain, constipation, shortness of breath, infection, combinations of medications, and the inability to urinate.

Environment can sometimes trigger restlessness, too. Some people become very uncomfortable in a setting different from home, such as a hospital. Others become restless and uncomfortable in a home care setting, and find themselves more relaxed and peaceful in other environments, such as a nursing home or hospital.

Emotions are also a major cause of restlessness and anxiety. Feeling very anxious and overwhelmed about what is happening, about what lies ahead, feeling alone or frightened, for example, can all trigger restlessness.

As with other side effects at the end of life, your health care team will work to find the cause of the problem. In most cases, side effects like pain, constipation, shortness of breath and others can be relieved.

If your physical location is causing restlessness, it may be possible to consider another location. If this is not possible, it may be possible to make changes in the setting where you are that will make it more comfortable for you.

If emotions lie at the heart of the problem, help can be sought here, as well. For a dying person, talking with a loved one or, if need be, a concerned health care team member or volunteer, can do much to alleviate feelings of fear and isolation. Don't hesitate to seek more information from your health care team, if you want that. If you prefer, clergy members can also visit. Companionship at the end of life is very important, and every effort should be made to satisfy that need.

However, other people may find themselves uncomfortable with a lot of people and prefer to be alone much of the time. What's important is that you have the support you want and need. Additionally, medications can help reduce anxiety and allow more peaceful rest.

Delirium is usually characterized by symptoms like hallucinations, agitation and disorientation. Delirium is frightening, and requires the immediate attention of the health care team to determine the cause and manage the problem. Sometimes medications of one kind or in combination can contribute to delirium, as can other physical events at the end of life. In almost all cases, other medications can be used to halt the symptoms and restore calmness.

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