How To Help During the Final Weeks of Life
Understanding the Problem
Preparing for the end of life with a chronic illness is different than with a sudden illnessSigns of dying
The last days of life are unique for each person
Goals for the home care plan
When To Get Professional Help
Recognize situations that require professional help for the patient to reach a natural deathWhat You Can Do To Help
Keep the person comfortableGive general nursing care
Welcome visitors
Cope with changes
Possible Obstacles
"Different family members disagree about what to do."Carrying Out and Adjusting Your Plan
Keep track of your own energy, and get help if you need itBe honest about whether helping at home is too much
When To Get Professional Help
Health professionals can play an important role during the final days of life, but their advice and treatments (if any) will not be geared toward "curing" the person. At this point, it is hard to change the underlying physical problems, but the discomfort that results from those problems can be eased.Call the doctor or nurse if any of the following situations exist:
The person you are caring for has difficulty becoming comfortable.
You will know when people with advanced cancer are uncomfortable. They may tell you, or they may be tossing or moaning. If they are not conscious or awake, they may be frowning. Call the hospice or home care staff for help. If home care nurses or hospice staff are not available, call the doctor's office and ask that a visiting nurse or hospice nurse come to your home because the person is uncomfortable and, at this point, you do not know what to do.
The person you are caring for is confused or seeing things that are not there.
Occasionally, being confused about the time of day, day of the week, or the date is normal, but severe confusion can upset people with cancer as well as you. Severe confusion might mean that they do not know where they are or who they are with. This can be a real problem if they are unhappy about where they think they are or afraid of what they see or hear. They may even see things that are not there. Sometimes, these visions are of people who have already died, such as a mother or a child. These are called hallucinations. If these visions comfort the person, they are not a problem. If they scare or upset the person however, or if the hallucinations are affecting or upsetting the family, they are a problem. Call about severe confusion or upsetting hallucinations.
The person you are caring for is suffering from severe fear or anxiety.
Try to understand what is frightening the person, but do not make assumptions. You could be wrong, and that would hinder your ability to help. It is okay to ask the person what worries them most. This allows you to focus on the real issue rather than guessing about what the person is afraid of. For example, you may assume the person is afraid of dying when, in reality, he or she is afraid of being left alone or running out of money.
Sometimes, anxiety is caused by medicine. If so, the medicine can be changed, and anti-anxiety medicines can be used. Visiting nurses can talk with the doctor and ask to have these medicines ordered.
You feel tired and overwhelmed.
Needing help from other people is not a failure on your part. Your health is important if you are going to provide the best care for the patient. Eating and resting are crucial. Sometimes, it is hard to ask for help when you are caring for someone through the final days of their life - but you should! Call for help from a visiting nurse agency or a hospice. These groups will send out nurse's aides to give baths, do light laundry, change the bed, and give you both help and support. Registered nurses and other professionals will help you to manage medical problems that arise. Family and friends are important now as well. Ask them to help, and give them specific tasks that will help you as well as make them feel useful.
You do not think that you can handle keeping the person at home.
Some caregivers are comfortable helping someone during the final days of life. Perhaps they have done this before; perhaps they have watched others do it. Giving nursing care and dealing with problems are not so upsetting to them.
Other caregivers have more difficulty. If they work outside the home, they may be overwhelmed by the strain of "two jobs." They also may have children. The task of caregiving may be new for them as well. They may have never been with someone during the final days of life or have helped with a natural death. They may have too much going on in their own lives to be able to handle the added demands of caring for a person with advanced cancer.
If you are not sure that you can handle caregiving near the end of a person's life, talk about your worries with someone. Social workers at the hospital or hospice are very helpful. Even if the person with cancer does not go to that hospital anymore or just goes to an outpatient clinic, call the hospital and ask for their department of social work. If you have visiting nurses, ask them to send a social worker to your home. They can help you to sort out which parts of caring for someone at home are most difficult, then you can discuss if you should move the person somewhere else, such as to a nursing home, or if someone else can take over some of your responsibilities as home. That decision, of course, is always up to you and the person being cared for. Include the patient in all of these decisions and discussions as much as possible.
The person with cancer is having trouble breathing.
Report problems with breathing, especially if the person finds it hard to draw air into the lungs or release air. Labored or difficult breathing is very upsetting, but professional staff can help. They might order oxygen or other medicines to relieve anxiety. Sometimes, the patient is worried about running out of oxygen. If this is true, tell the supply company to bring you more than one tank, and set it up where the person with cancer can see it and feel reassured that a back-up tank is handy. Use a fan to keep air in the room moving, which can make breathing seem easier. Run the fan near their face, or open windows.
Another way to ease breathing is giving anti-anxiety medicines and narcotics. Ask the nurses to arrange this with the physician. These medicines are available in several forms; pills, liquids, and suppositories are most frequently used.
Shortness of breath can and should be relieved even up to the time of death. See Shortness of Breath for a discussion of what can be done for this problem
What You Can Do To Help
Here are four ways that you can help during the final weeks of life:Keep the person comfortable.
Give general nursing care.
Welcome visitors.
Cope with changes.
Keep the person comfortable
Use an eggshell mattress and foam cushions.
Many people with cancer lose weight; therefore, they may be less comfortable lying on their former mattress or sitting in chairs that used to suit them. Eggshell mattresses are made of foam and are softer than conventional types. Some people also cut up foam rubber to put on chairs or couches. The foam softens the seat and makes it more comfortable. Eggshell cushions and mattresses can be bought at large department stores or medical supply stores. Sometimes, visiting nurses will order a special mattress to prevent bedsores.
Use lip balm or salve to prevent chapped lips.
Dry lips and mouth can be a serious problem when a person is not drinking much. Some of this discomfort can be prevented by using lip balms. Avoid using Vaseline if the person is on oxygen, however, as it can clog the line.
Use the end of a straw to give small sips of liquids.
Some people have trouble drinking from a glass because of weakness. If so, give fluids by dipping the straw into the glass and then holding your finger over the end of the straw. This holds liquid in the straw. Drip the liquid into the person's mouth by loosening the finger for short periods of time.
Use a special spoon to give liquid medicine.
Pharmacies carry special spoons that help to avoid spilling liquid medicine. The spoon handle is enclosed and looks like a tube. You can pour the medicine into the scoop part, and it will flow down into the tube and into the person's mouth. It is much easier to take medicine such as Maalox with this type of spoon, but you also can use a syringe. Have the nurse show you how to use it. If the person is having trouble swallowing, a few drops under the tongue will still be absorbed.
Easing discomfort caused by fever.
Sometimes, fevers develop because not enough liquid is taken. If so, encourage the person you are caring for to drink more. Cool cloths applied to the brow can help as well, but do not give icy or cold baths. In some cases, the doctor may order antibiotics to fight the infection if, for example, the infection is causing pain or discomfort.
Manage and prevent problems with bleeding.
Minor skin bleeding sometimes occurs because of bumping the arms or wrists on furniture. This is because the skin is not as tough as it once was. Medicines also can cause changes in the skin so that it is easily scraped open. Small gauze pads can be placed over any open spots and wrapped with 1- or 2-inch gauze to stay in place. Avoid using tape, however, as it might tear open the skin when removed.
If a nosebleed occurs, tilt the head back, but do not have the person lie flat. This could make the person choke on blood dripping from the nose into the throat. Put ice wrapped in a washcloth on the nose for short periods, such as 2 minutes.
Pressure on the skin and nose stops most bleeding. Bleeding inside the body or in the urine and stool, however, cannot be stopped in this way, because you cannot put pressure on these areas. If bleeding from the nose or other places continues, call the visiting nurse. The physician might order medication to slow down the bleeding as well.
Consider using an electric hospital bed.
Electric beds are easy to operate. The person with cancer can control the positions, and so can you. Hospital beds also can be non-electric, using a crank at the bottom to raise it up or bring it down and to elevate the head or feet. Cranking takes more work and bending, however. Many families set the bed in a living room or den on the first floor so that they will be near and visitors will have more room to visit.
Let the patient plan the day.
Letting the patient plan the day will show respect and support his or her dignity. Let the person plan what to do, what to eat or drink, when to sleep, and when to visit with others. Some people find watching television helpful.
Touch, and talk.
Even if the person is sleeping much of the time or slips into a coma, touching and talking remain important. Touch can include back rubs or holdings hands. Visitors can read scriptures or stories or review old times. Some people read poems, and background music can help. All of these decrease a person's sense of being alone and can be very comforting.
Invite ministers and church members to visit.
Prayers and conversations with ministers and fellow church members can be very comforting for some people. Priests or deacons may want to bring sacraments, such as last rites or communion. Many home health agencies and hospice groups have a chaplain on staff who can visit as well. These visits should not be forced, however. It is up to the person with cancer to decide who would be comforting.
Understand that what you do is not wrong.
Some caregivers worry they are not doing enough to keep the person comfortable or are not doing the right things. A few may even feel responsible for bringing on an early death. Nothing you can do (or not do) will change what is happening or lead to an early death. There really are no "mistakes" made at the end of life. The important point to remember now is that the goal is comfort.
Give general nursing care
Use a pan for bathing.
If the person you are helping does not want to get in the tub or shower anymore, he or she can sit on top of the toilet seat or on a chair in front of the sink and bathe. If the person does not feel like getting out of bed, you can help with a bath in bed. Think back on how this was done in the hospital or the way you bathed small children. You need to set a pan of warm to hot water on a table or sturdy chair, then wring the washcloth well, soap it, and help the person to bathe. Be sure to keep him or her covered with a soft sheet or blanket to avoid a chill; this is important for privacy, too. It is wise to start with the face and then do the arms and legs, the chest and back, and finish with the private area. A nurse or nurse's aide can help you with bathing.
Soak the feet in warm water.
Many people enjoy the feeling of warm water and miss bathing in a shower or tub. You can make up for this by helping the person to soak his or her feet in a pan of warm water. Do one foot at a time, and leave it soaking for about 10 minutes. This will avoid a spill.
Change the sheets at least twice a week.
If the person is spending a lot of time in bed, the sheets will get soiled more quickly. Fresh sheets usually are enjoyed. If the person is resting on couches or sleeping in a reclining chair, a fresh sheet cover is nice in these locations as well.
Help with mouth care twice a day.
Keep up the same routines for dental and mouth care, including denture care if needed. A fresh mouth makes the person feel better.
Use lotions that do not contain alcohol.
Skin dryness can become a problem as a person drinks less. Read the label on any lotion you are using, and avoid lotions containing alcohol. Gently rub lotion on the elbows, heels, back, and spine. These places are very dry and can break down.
Prevent bedsores.
When a person is in bed for a long time, some spots on the body can develop sores because of constant pressure. At first, they are pink, but then they turn red, the skin opens, and the size of the sore quickly increases. Bedsores start under the skin, and you may not even know they are there until they become severe. Bedsores often hurt, and the most likely places for them are where bones are sticking out, such as at the ankle bones, heels, end of the spinal column, hips, and elbows. Visiting nurses and hospice staff can help you to prevent bedsores. Call for their help if you notice very red areas or open sores.
Do not force food.
Forcing food will distress the person with advanced cancer as well as the family. It is natural for a dying person to want less food. This is the body's natural way of approaching death - by shutting down.
It is hard to give up trying to feed someone you care about. Using intravenous (IV) fluids or special tube feedings for nutrition are not part of dying naturally, but if the person with cancer wants these treatments, that is his or her right. Talk this over with the home care nurses, hospice staff, and physician. You can still offer sips of water. Cut a straw into a shorter length so that he or she can sip liquids. If the patient is too tired to sip, drop water into his or her mouth just to freshen it and give comfort. This will be very much appreciated.
Welcome visitors
Not everyone is comfortable visiting a person in the final weeks of life. Some people want to stay away. Others want to come and help. The person who is sick should have control over who will visit. Here are some ideas to help manage visitors:
Set time aside for bathing and rest.
Stay in control of the schedule; otherwise, visitors may come and go all day. Let people know if a visit is better in the afternoon or evening so that both you and the patient have time for rest and personal care.
Tell visitors if they are staying too long.
At this point, it is okay to be honest. Visitors want to know what both of you want. If you or the person with cancer are tired, ask for shorter visits or telephone calls.
Ask the person with cancer who he or she would like to see, and invite those people.
The person with cancer has a right to control the social scene. He or she may not want to see certain people or, if it is a bad day, anyone.
Cope with changes
Helping someone who is very ill brings on many challenges. You may have to take on new responsibilities. You also may face new physical, emotional, or mental strains. Here are some ways to help deal with these challenges:
Locate bills, checks, accounts, and important papers such as insurance policies.
The person with cancer may have shared decision-making about finances with you previously. If not, it is time to locate important papers like these and talk about what they mean and what needs to be done.
Learn new household chores.
If the person with cancer has done certain household chores in the past, such as shopping, preparing meals, or cleaning clothes, you will have to do them yourself now or ask someone else to do what needs to be done. Nurse's aides and home helpers can do some shopping and run errands, but they may not visit daily and do not always have the time for these chores. It often is better to depend on friends, neighbors, or relatives for these things (unless you want to do them yourself).
Ask the bank ahead of time how accounts are handled after someone dies.
The bank will probably tell you that two names are needed on an account to be able to withdraw funds after someone has died. If you do not have two names on the account, put them on weeks before the person with cancer dies.
Talk with a friend about your feelings.
Being with a close friend or someone you can talk to is an excellent way of sorting out your feelings. Knowing that others care and are there to listen gives many people support, strength, and confidence during this difficult experience.
Plan something nice for yourself once a day.
Many caregivers do not take any time for themselves, and they sometimes feel guilty if they do. Going to lunch with someone or taking a nap are two examples of short activities that can help you to keep anxiety or stress from building to the breaking point.
Seek professional help for your emotional problems.
Many people are reluctant to ask for help from counselors; they think that it means they are "crazy" or not strong enough. Professionals such as counselors, ministers, psychologists, psychiatrists, social workers, or nurses are experienced in listening and can help you deal with your stress. These people are there to help you with emotional, mental, or psychologic problems.
Physicians can evaluate if certain medicines will help you. For example, antidepressants may help. If your doctor does prescribe an antidepressant, he or she will follow you closely and watch for side effects such as blurred vision, feeling "out of it," or extreme fatigue. If any of these side effects happen, the doctor will change either the drug or its dose. Anti-anxiety drugs also can help, especially if you are having trouble sleeping.
Possible Obstacles
Here is an obstacle that other caregivers have faced:1. "Different family members disagree about what to do."
Response: Tensions sometimes run high during the final days of life. People may have different opinions about a lot of issues, and it is not easy to resolve these, especially when people are upset. If a decision does not need to be made now, try to postpone any discussions of controversial issues. If a decision is needed immediately, imagine that you are looking back on it a year from now - and make the decision you think that people will feel best about at that time. Some decisions will not please everyone. Just make the best decision you can - and live with the consequences. Always be sure that the patient's comfort comes first.
Try holding to what you know the patient wants or would want, but if this cannot happen, accept your own limitations. For example, if he or she wanted to die at home but this is not possible, realize that you did all you could at home and that dying in the hospital or nursing home was the only way to ensure the person's comfort.
Think of other obstacles that could interfere with carrying out your plan
What additional roadblocks could get in the way of the recommendations in this plan? For example, will the person with advanced cancer cooperate? How will you explain what is needed to other people? Do you have the time and energy to carry out the plan?
You need to develop plans for getting around these roadblocks. Use the COPE ideas (creativity, optimism, planning, and expert information) in developing your plans, and see Solving Problems Using This Guide for a discussion of using these ideas to overcome your obstacles.
Carrying Out and Adjusting Your Plan
Checking on resultsKeep track of your own energy, and see Getting "Respite" Care or Extra Help at Home for ideas. Remember, you do not have to help the person at home alone, and you can say no to the responsibility for this task if you want. If you are worried about doing a good job or unsure that you want to be doing any of these things at all, ask for help. Doctors, nurses, and social workers can help you.
Continue watching for signs that immediate professional help is needed.
If your plan does not work
1. See When To Get Professional Help. If you answer yes to any of the questions there, call the doctor and find out how to get a visiting nurse or hospice professional to visit quickly.
2. Keeping someone who is very sick at home can be tiring and stressful. Be open to changing your plans about how to do this, and be honest about whether you want to do this at all. If you move the person to a nursing home, you can always move him or her back home, or to someone else's home, when you have more energy or help.
You can download this chapter or the entire Home Care Guide to Advanced Cancer.
Copyright © 1997 by the American College of Physicians. The American College of Physicians gives permission to reproduce and distribute copies of this plan provided it is not altered and its use is not for profit.
