Tranquility Path I Pierre-Auguste Renoir

What To Do Before and After the Moment of Death

Understanding the Problem

Follow the person's wishes

"Care" compared with "cure"

Signs of dying

Signs that death has occurred

When To Get Professional Help

Situations indicating that professional help is needed

What You Can Do To Help

Help with comfort and rest

Prepare for physical problems

Prepare the funeral home ahead of time

Avoid calling 911 or an emergency team

Prepare a list of people to call near the time of death

Feel free to say goodbye at the place of death

Possible Obstacles

"Some family members feel we should do everything possible to let him live longer."

"If I prepare in advance, people will think that I want her to die."

"I don't want my children to remember their grandmother like this."

Carrying Out and Adjusting Your Plan

Ask the person if his or her wishes are being followed

Be honest if helping at home is too much

Topics with an arrow () in front of them are actions you can take or symptoms you can look for.

The information in this home care plan fits most situations, but yours may be different.

If the doctor or nurse tells you to do something other than what is recommended here, follow what they say. If you think there may be a medical emergency, see When To Get Professional Help.

Understanding the Problem

The most important goal when death is near is to do what the person with advanced cancer would choose. Ideally, he or she knows what is happening and has participated in decisions about how to live and die. If not, you should strive to do what this person would want.

Most people in a hospice want a natural death. Therefore, in the last stage of the illness, physical problems are not treated with a "cure" in mind. Any chemotherapy or radiation is given to ease distressing symptoms, such as pain in a hip bone caused by a growing tumor. Treatment also can be given to prevent unfortunate results from tumor growth, such as paralysis of the lower half of the body, being unable to move one's legs, or losing bladder control. In these cases, a few doses of radiation or drugs help patients to regain comfort. Ideally, what happens during the final days and moments of life is guided by the goal of maintaining comfort and reaching a natural death.

Following the wishes of the person with cancer may mean decisions that are different from what you would choose for yourself and that are against the advice of physicians and nurses. For example, nurses might suggest getting a hospital bed, which could make bathing and drinking liquids easier for the caregiver and the family. The person with cancer may refuse, however, because he or she wants to stay in a familiar bed. In other words, practical choices may not be the patient's choices. If the family cannot provide care without the help of a hospital bed, they should talk this over with the patient. The family should be open about what it needs while remaining sensitive to what the person who is dying wants.

When a person has advanced cancer, dying often occurs slowly (over several days or a week or so), but it also can happen quickly (in a few hours). You should be prepared for either situation.

Each day, the person grows weaker and usually sleeps more, especially if his or her pain has been eased. Many families do not know when dying is taking place, and they are not always sure when death itself has happened. Over the past 100 years, more people have died in hospitals and nursing homes. Death has become less of a natural event in family life, and fewer see the process from beginning to end. People with illnesses once died at home, and families were accustomed to watching for signs that the end of life was near. Today, many families are choosing to be like their grandparents and to help someone they love through the final weeks and days of life at home.

Near the very end of life, you can expect the person's breathing to become slower - sometimes with very long pauses in between breaths. Some pauses may last longer than a minute or two. This type of breathing frequently occurs if the person is in a coma; you will know a person is in a coma because he or she cannot be awakened. In rare cases, however, the person may open his or her eyes. This may surprise you. He or she usually does not talk but is awake for a short time. In other words, some people come out of, and go back into, comas. The skin will be cool, especially around the feet and hands, and it also will be a different color at these places - usually blue, gray, or some combination of both. If the person's skin is naturally dark, such as for an African-American, it will become dusky. Finally, the patient also may become incontinent of urine or stool. Usually, however, the person has had so little to drink that this does not amount to much.

At the end of dying is death itself. You will know this has happened because the chest will not rise and you will feel no breath from the nose. The eyes may be glassy (if they are open). You will not feel any pulse in the places where you felt it before. When you realize someone has just died, it is a very "still" and quiet moment.

Your goals

Help with comfort and rest.

Prepare for physical problems.

Prepare the funeral home ahead of time.

Avoid calling 911 or an emergency team.

Prepare a list of people to call near the time of death.

Feel free to say goodbye at the place of death.

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When To Get Professional Help

Some families have never cared for a very sick person at home. Nurses, social workers, or ministers who have helped other people near death can give you advice and assistance. They can explain what is happening and what can make the person with cancer more comfortable. They also can help you to decide if keeping the patient at home is really the best decision.

Call for professional help if any of the following problems occur:

The person is uncomfortable.

Dying should not be physically painful. Many medicines are available to give comfort during the final days of living with cancer, and health care professionals can order these for you and show you how to give them. See Cancer Pain for information about pain medications.

The person is having trouble breathing and seems upset, even if he or she is asleep or in a coma.

Medicines are available that can relax persons with cancer and help them to breathe. Oxygen also helps. Breathing problems can upset both you and the person being cared for.

The person has problems passing water or with bowel movements.

Even during the final days of life, people need to pass water and stool. Usually, the urine is dark and comes in much smaller amounts. It does not matter that the person is not eating or drinking. The body still makes waste. Hospice nurses are skilled at solving problems with urination and constipation, so call them for help.

The person has fallen.

Falls happen, especially when a person is weak or confused. After the fall, it may be difficult getting the patient back into a bed or a chair - especially if he or she is heavy or in pain. If you have difficulty moving the person, call for help while making him or her comfortable on the floor with a pillow under the head (and with a sheet or a blanket if necessary). If hospice or home care staff cannot come, local fire companies can be called for help or instructions about how to lift people properly. Hospice nurses also may show you how to gently help the person. If you have helpers, place a sheet or a blanket underneath the person and lift by using the sheet or blanket rather than by pulling on the person. This is a much easier and safer way to help someone back into bed or a chair.

You are having trouble giving medication.

Some people have difficulty swallowing and cannot take the pills that are needed for comfort. If a person is unconscious or in a coma, he or she cannot swallow and should take nothing by mouth (not even liquids). Most medicines can be given in other ways, such as by suppositories or injections. Ask the hospice staff to teach you the best way to give medicine.

You feel that you cannot go on caring for the person at home.

Keeping someone who is very sick at home can be tiring and stressful. You should be honest with yourself about whether you can, or even want, to care for such a person at home. If you move the person to a nursing home or a special hospital unit, you can always move him or her back home, or to another person's home, when you have more energy or help. Home care or hospice nurses and social workers can explain your options and help you to decide what is best for both you and the person with advanced cancer.

You are upset thinking about being without the person who is dying.

Sometimes, grief hits you before the death occurs, and you feel afraid or overwhelmed. When this happens, share these feelings with an understanding person. Hospice staff and clergy are experienced and skilled in helping you with such feelings. Friends and relatives also can help if they are understanding and supportive.

You or the person with cancer feel that you are being punished, or you feel guilty or worried about something in the past.

Feelings that you are being punished sometimes are mixed with guilt, regret, or sadness, as well as with feelings of being unable to forgive, get angry, or express love. Talking with hospice staff or clergy often can help to sort out your feelings and understand why you feel as you do. Understanding friends or relatives also may be helpful.

What You Can Do To Help

Here are six ways to help both the person being cared for and yourself during the final days of life:

Help with comfort and rest.

Prepare for physical problems.

Prepare the funeral home ahead of time.

Avoid calling 911 or an emergency team.

Prepare a list of people to call near the time of death.

Feel free to say goodbye at the place of death.

Help with comfort and rest

Rest and sleep are important even during the final days or hours before death. Some believe that death comes very gently if the person is relaxed and rested. Help with comfort and rest in these ways:

Continue giving medicine for pain on a regular schedule.

A person can feel pain even in a coma, when dozing, or when not even conscious or awake at all. Keep giving medication at the same interval as before, such as every 4 hours. If you give less medicine, or give it less often, you may notice signs of pain. Watch for clenched fists, frowns, restlessness, moaning, or attempts to turn. Should any of these occur, check that you are following the correct schedule. If you are, ask the doctor about increasing the amount of the medicine.

Play soft music if it seems to be relaxing.

Music can be very soothing, even when a person is not conscious.

Have two people gently turn the person every few hours, or rearrange his or her position with pillows.

Turning the person does not have to be hard to do if you use two people. One stands on each side of the bed. Move the person from lying on his or her back so that he or she is tilting toward one side for a few hours. Then, a few hours later, turn the person completely on that side. As time goes on, repeat this in the other direction, returning the person back to lying on his or her back for a few hours and then to lying completely on the other side. Pillows and cushions can be used to prop knees or arms off the bed to avoid bed sores, and rolling a pillow and tucking it behind the back will keep the person lying on his or her side.

Use a folded sheet under the heavy part of the body to help with turning or lifting the person to the top of the bed.

Take any single- or double-sized sheet and fold it into a square that is a little larger than the bed underneath the person. Then, roll up half of this square, turn the person to one side, and slide the square under the patient. When you turn the person onto his or her back, you can pull and smooth out the rolled up half so that the person is now lying on top of the square. If you need to pull the person up in bed, have two people take hold of the square, on each side of the bed, and lift the square so that the person is lifted slightly off the bed and gently slide him or her to the top of the bed. This works because the heaviest weight of the person is off the bed and two people are lifting with equal pull on both sides.

The square sheet also can be used to help with turning a person from side to side. Ask a visiting nurse or nurse's aide to show you how to do this, and practice with them until both you and those helping you know how to turn and move the patient.

Give back rubs, and maintain skin moisture with lotion.

Gently rubbing the patient's back, arms, legs, or hands with lotion relieves any muscle soreness and aches, and it helps the person to feel cared for and not alone. Avoid lotions with alcohol in them, however. The skin usually is dry at this point, and alcohol-based lotions will only make it drier.

Roll up washcloths or small towels, and place them inside the patient's hand after shaping it into a loose fist.

Sometimes, a weak person's hands can grow stiff and almost freeze in position unless they are massaged and moved. Gently roll the wrist back and forth, massage the palms, and then massage and move the fingers. Afterward, place a rolled washcloth inside the palm and shape the fingers around it.

Avoid using bright lights.

Soft lighting is easier on the eyes and promotes an atmosphere of rest. People with brain tumors often are bothered by bright lights or daylight; they prefer darker rooms. Explain to visitors why the bedroom or other setting is dark.

Moisten the patient's eyes, or use a warm, damp cloth over them several times a day.

Toward the end of a person's life, the skin dries out, and so can the eyes. If the eyes are left open and are very dry, they also can develop sores that are uncomfortable. You can avoid this by moistening a cloth and gently placing it over the person's closed eyes.

Moisten the person's lips, and use lip salve or balm to prevent dryness.

The lips and mouth also can get very dry, so use whatever balm or ointment has worked in the past to keep the person's lips moist. A few drops of water into the mouth every few hours can help to prevent severe drying. Some over-the-counter balms, such as Herpecin-L, also prevent mouth sores and ulcers, which can appear at the corners of the lips and cause discomfort.

Prepare for physical problems

Preparing for a close friend or family member to die means thinking about some basic questions ahead of time. This will make it easier to deal with problems when they occur. Hospice and home care staff know which problems are likely to happen and how to prepare for them.

Keep the phone numbers of home health nurses, hospice staff, and physicians nearby.

These numbers may be hard to find when you are under stress or feeling as if you are in a crisis situation. Make a list, and keep it on the refrigerator or by the phone. Everyone helping with home care needs to know where these numbers are as well, so make sure to point them out.

Have pain, anxiety, or sleeping medicine at home in liquid or suppository form, or check that a local pharmacy has them.

You may need to change from pills to liquid medicines or suppositories as the condition of the person with cancer changes. Hospice staff can talk you through a new way to give medicine, either during home visits or by phone. Most pharmacies have the necessary drugs in the forms that you will need. Hospital pharmacies can help as well, and the hospice or home care nurse can assist you in locating such medicines if you live in a small town or rural area. It is very important to plan ahead for how you will change from pills to liquids or suppositories.

Some doctors recommend atropine to dry up throat secretions that cause a gurgling sound or make it harder for the person to breathe. This drug can be very helpful. It dries respiratory wetness, so the person with cancer does not need to cough up secretions, which can be very distressing.

Fold a sheet to use as a lift sheet, and save newspapers or plastic bags to protect the mattress from any liquid or urine spills.

During the final weeks of life, the person with cancer will likely be staying in bed. It is important to keep the bed clean and dry for sanitary reasons as well as to promote a feeling of well-being.

Select a pan that can hold water for any bathing that is done when the nurses are not visiting.

Warm water baths, even in bed, are relaxing and make a person feel fresh. If the person with cancer allows family members or friends to do this, be prepared with a pan, washcloths, and a light blanket to keep him or her covered during baths.

Obtain extra sheets to fit the person's bed, even if you need to borrow them.

Some families find they need extra sheets because they do not have the time or extra help to do laundry. Extra sheets also are can be helpful when lifting or turning the person in bed.

Keep candles, flashlights, and blankets ready if severe weather cuts off power.

Power failures do occur. Have a few back-up lights ready by stocking candles, matches, and flashlights, and prepare to keep the patient warm with extra blankets.

Write information and instructions about home care and people to call in a single notebook.

Tell people who are helping you where the notebook is, and ask them to read it and be sure they understand your instructions. This will ensure good care for the person with advanced cancer when you are away.

Prepare the funeral home ahead of time

Inform the funeral home that you expect a natural death in the near future.

Preparing the funeral home staff will help them as well as you. They will recognize your name and be prepared when the death occurs, and they can check with the primary physician to be sure that the death is expected and "natural." Most hospices will make this call to the doctor or the funeral home for you, which reduces the chances of a misunderstanding or unnecessary questions when they come to take the body. Although rare, some funeral staff may wonder if any "foul play" has occurred (and if they should call the police). Such questioning happens more often in cities rather than rural areas, but no matter where you are, the hours just after death is not a time when you want to deal with suspicious people.

The funeral home staff also can tell you about the costs and different kinds of services so that you can be thinking about what you want and can afford. Some families prefer to make these arrangements early so that the person with advanced cancer can help in the planning. Others make these arrangements just before death occurs.

Do not feel that you must call the funeral home immediately after the person dies.

Once the person with cancer dies, some people want to "get on with it" and have the body picked up quickly. Others prefer to sit with the body, cry, and talk. Sometimes, friends and family who were not present at death want to see the body before it is moved from that last place where the person was alive. If so, wait for the others to arrive and express their grief. Time is no longer an issue. The body can stay in the home for quite some time before the funeral home staff needs to pick it up. If the person died in a chair, it is best to lay the body down on a couch or bed after death and the first goodbyes are said. Even if the person had lost a lot of weight, lifting the body will be difficult and probably take at least two adults.

Avoid calling 911 or an emergency team

Understand what calling 911 means.

When you or someone else calls 911 or the emergency number in your area, you need to remember that the crew will arrive expecting to save a life or give "aggressive treatment'-even, in most states, if the person has a "living will" containing his or her wishes to the contrary. Ambulance crews are bound by law to do this. Aggressive treatment means inserting tubes, trying to start the heart if it has stopped, and attempting to move air into and out of the body. These attempts to restore life rarely work for people who have died from advanced cancer, and they do not help with the person's comfort.

It may take time to persuade the crew that you want help controlling a symptom, such as trouble with breathing or pain, and that you do not necessarily want them to save a life. Any emergency team will want to know who the primary doctor is, and they may want to call his or her office after the situation is "under control" and the distressing symptom has been relieved. Should the person with cancer die while they are there, expect the emergency team to do what they know best: life-saving action. They also probably will move the patient from the home and to the hospital, and even admit them to an intensive care unit.

Once the person is in a hospital, whatever is in a living will may be ignored until the physicians agree that the he or she can be allowed to die a natural death. In many states, a living will that is valid at home is not valid at a hospital until a doctor puts it in the hospital chart. Sometimes, living wills that were put in the chart earlier are lost, and you will need a new one. Do not assume that a living will accepted at one hospital will automatically be accepted at others.

Some small towns, rural areas, and certain states allow communication between home health agencies and hospices and local 911 or emergency response teams to prevent this problem. If the patient and family agree, hospice staff can inform local emergency teams in advance about who has a terminal illness and what the goals should be if the family calls for "emergency" help. Unfortunately, many areas of the nation do not permit this type of practical information exchange, and they do not let 911 teams follow the wishes of a living will. Check to see what is allowed in your area by asking your hospice team.

Ask someone you trust to tell others that calling an emergency team is not the best idea when the goals are comfort and care, not cure and life-saving.

Be sure to tell people who sit with the patient or provide nursing care that calling 911 is not what you and what the person with cancer want (if that is truly the case). Post this information on the refrigerator or near the phone if you are not home while others are providing care.

Call the hospice or home health staff if the patient has fallen.

If the hospice or home health staff cannot visit, ask if you should call 911 or your local emergency response number. They can help you decide what the next step should be, and they are available 24 hours a day.

Prepare a list of people to call near the time of death

Decide who would want to visit the home near the time of death to say a final goodbye.

One way to know this is by listening to people's requests. Some will ask to be called when the time is near. As a caregiver, however, you cannot be all things to all people. Ask someone else to make a note of who wants to be called. Not everyone will be home or available by phone that day, so ask your designated caller or someone else to take responsibility for calling those who could not be reached.

Make a list of people who want to know when the person dies or to hear near the time of death.

After you and any family and friends decide who wants to be called near the time of death, make a list of their names and phone numbers. Otherwise, make a list of how to get in touch with these people so that they are told about what has happened.

Decide who would be most helpful to you near the time of death.

You likely will feel tired and stressed near the time of the person's death, and this is when you need, and should get, help. You will give better care and be under less stress if you get this help from others. If possible, tell them in advance that you may need help; otherwise, just call and say, "Could you do this for me?"

Ask selected adults to be "on call" to help with any younger children near the time of the person's death.

Some adults have a way with children, and children also like and trust certain adults. If you know such adults, ask them to play with and help any children who are present.

Decide if clergy or a counselor should be called before or at the time of death.

People with advanced cancer may want to talk to a minister, priest, rabbi, or counselor when they are very ill or dying. Prayers, rituals, and silences with these people can be very comforting to the person letting go of this life as well as to those people involved in his or her care. If the person with advanced cancer wants this, call ahead of time and ask the minister or counselor to visit before the time of death.

Possible Obstacles

Think about ideas or attitudes that could stop you from following the wishes of the person with cancer and preparing for his or her death. Here are some examples of obstacles that other caregivers have faced:

1. "Some family members feel we should do everything possible to let him live longer."

Response: Usually, when people say "we must do all we can," they are really saying "I'm not ready to see this person die." They are saving the person's life to avoid facing the death and the loss. "Heroic" measures should be pursued only if the person with cancer wants them. Doctors and nurses should be talk with the person about these decisions before a crisis occurs, and they can ask the person to fill out a living will that states his or her wishes about the end of life.

2. "If I prepare in advance, people will think that I want her to die."

Response: People will always have opinions no matter what you do. Preparing for a death, such as calling the funeral director ahead of time, will help to make the time after a person's death easier and resolve some of the unknowns. No one has the right to make judgments about how you have handled the death. Every family is different, and you know what is right for you and your loved one.

3. "I don't want my children to remember their grandmother like this."

Response: Seeing a very sick person can be upsetting for children, especially if the patient is connected to tubes or machines. As long as children are prepared for what they will see, however, the benefits of such a visit usually will outweigh the negatives. Think about what the children can learn by seeing someone who is very sick. In a sense, it prepares them for the future, because sickness is one of life's realities, as is death. Why hide this part of life from them? Letting children visit also tells them they are an important part of the family, and it teaches them that death is something people can cope with. See Helping Younger People Cope With Death And Funerals for more ideas about how to make visits with sick relatives or friends easier on them.

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 guide? 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), and see Solving Problems Using This Guide for a discussion of how to use these ideas in overcoming your obstacles.

Carrying Out and Adjusting Your Plan

Carrying out your plan

The moments around the time of death are charged with emotion for many reasons, and you probably will need help from a home health or a hospice nurse and staff at this point.

Checking on results

Ask yourself if the person you are caring for is comfortable and if his or her wishes are being followed. Also, ask if you have the physical and emotional strength to give the care that is needed. If not, other settings, such as nursing homes or a hospice or palliative care unit in a hospital, are available.

If your plan does not work

Helping someone to die at home is hard work, and you may need to take the person you are caring for somewhere else to live out the final days of his or her life. This is not a failure on your part. Family members and friends can visit and not feel so responsible for nursing care or for keeping the patient comfortable. You can still help to give basic care in a nursing home or a hospice as well and be sure that the person is comfortable.

You can download 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. For information on translation, subsidiary, and for-profit use, contact David Myers. Phone: 215-351-2642; fax: 215-351-2644; e-mail: dmyers@mail.acponline.org.

No claims are made as to the reliability of any of the information provided or linked, sources often disagree. None of these pages are meant to be a replacement for professional help, but a resource that enables one to be a more intelligent consumer. You can learn a lot by becoming aware of different opinions. Don't be afraid to ask questions when it comes to your health, physical or emotional.

Regina Garson, Editor
editor@magicstream.org

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