Facing Death

Anyone with advanced cancer will at some point in time understand that he or she will not live forever. Family members will recognize this, too. Even if the person with cancer is doing well, death is a likely part of the future at some point. But thinking about death is frightening and painful. Patients and families worry about suffering before death and being alone in death.

Many people with cancer want to be at home until the end. A long illness and dying at home can be easier with the support of family and medical staff. Often everyone's goal is to help the person with cancer die at home, with his or her loved ones, with little or no pain.

When Death Is Approaching

Many people wonder about what happens near the time of death. This question usually is asked by a close family member or caregiver. They want to understand what to expect so they can be assured of supporting their loved one in the best way possible. This section has been prepared to help remove some of the mystery that surrounds the end of life by looking at the process of dying.

Consciousness

Some people become unconscious for hours or even days before death, while others remain clear and alert up to the last few moments. Usually, people who are dying gradually become confused and semiconscious over a few minutes or hours.

Pain is one of the first senses to decline just before death. Still, even though patients may no longer be able to express their pain, it is important to continue providing pain medication up to the end of life.

In addition, speech may become quiet before death, and the thoughts expressed may be quite unrelated to the events or people present. Often, the semiconscious person can still hear, although he or she is unable to respond. Words of endearment and support may still be understood and appreciated. Touching, caressing, holding, and rocking are all appropriate and comforting.

Fluids

Ice chips, water, or juice may be given as requested but should be stopped if the dying person has difficulty swallowing. Because the person no longer needs nourishment, solid food should not be given unless the person requests it.

If the person becomes too weak to drink from a cup or a straw, try giving fluids from a teaspoon. Also, care of the person's mouth is important. Apply petroleum jelly or some other lubricant to the lips to prevent drying. Remove mouth secretions with the tip of a towel by turning the person to his side.

Temperature

As the circulation of blood begins to decline, the dying person's hands and feet become cooler, darker, or sometimes more pale than usual. Later, the same changes occur in the face. Although the skin is cold and either dry or damp, the dying person is usually not conscious of feeling cold, and light bed coverings provide enough warmth.

Breathing

Breathing is usually easier when the person is lying on his or her back, or slightly to one side with a pillow under the head. Of course, any position that makes breathing easier is acceptable, including sitting up with good support. Whatever position the person is in should be relaxed and comfortable.

While oxygen may help some people, it offers little for others. Often breathing becomes peculiar, alternating gradually between rapid and slow. Rattling or gurgling with each breath results from secretions in the back of the throat. Although these sounds may be distressing to listen to, they do not indicate that the patient is uncomfortable.

Involuntary Movements

Some people may have involuntary or reflex movements as they are dying. These movements, while rare, may involve any muscles. They most commonly occur in an arm, leg, or face muscle. In addition, the person may lose control of the bladder or the bowels as these muscles relax.

When breathing and the heartbeat have stopped, the eyes become fixed in position and the pupils dilate. After death, family members may sit with their loved one as long as they wish. Many families find comfort praying or talking together at this time. The family may reconfirm their love for each other as well as for the person who has passed away.

At home, the family is responsible for calling the proper people. If possible, someone in the family should find out in advance what must be done. Regulations concerning proper notifications and removal of the body differ from one community to another. The doctor or cancer care team can help get this information for the family. If funeral arrangements have been completed, the funeral director and doctor will need to be notified.

Signs and Symptoms of Approaching Death

The cancer care team will talk with the family about what to expect as the patient's condition declines. Hospice care should be discussed. While not all of the following symptoms may occur, it may be comforting to know about them.

Possible Changes in Body Function

• Increased periods of sleep during the day
• Difficulty waking from sleep
• Confusion about time, place, or people
• Restlessness or picking or pulling at bed linen
• Increased anxiety, restlessness, fear, and loneliness at night
• Less desire for food and drink

What the Family or Caregiver Can Do

• Plan to spend time with your loved one when he or she is most alert, or during the night when your presence may be comforting
• Remind your loved one who you are, and what day and time it is
• Use calm, confident voice to reduce chances of startling or frightening a confused person
• Apply cool, moist washcloths to the patient's head, face, and body for comfort

Possible Changes in Secretions

• More mucus in the mouth that collects in the back of the throat causing a distressing sound sometimes called a "death rattle"
• More thick secretions due to less fluid intake and the inability to cough

What the Family or Caregiver Can Do

• Keep oral secretions loose by adding humidity to the room with a cool mist humidifier
• Provide ice chips or sips of liquid through a straw, if the patient is able to swallow; this will thin secretions and relieve thirst and dry mouth
• Change the patient's position- turning to side may help drain mouth secretions

Possible Circulation Changes

• Cooling of arms and legs
• Deepening of color and mottling of skin of arms, legs, hands, and feet
• Dusky, pale skin in other areas of the body

What the Family or Caregiver Can Do

• Provide blankets if needed or requested by the patient
• Avoid use of electric blankets and heating pads

Possible Sensory Changes

• Blurred or dimmed vision
• Decreased hearing, though most people are able to hear you even after they can no longer speak

What the Family or Caregiver Can Do

• Leave indirect lights on as vision decreases
• Never assume your loved one cannot hear you
• Continue to speak with and touch your loved one to reassure him of your presence

Possible Breathing Changes

• Irregular breathing caused by poor blood circulation and the build-up of waste products in the body
• Periods of no breathing (10-30 seconds)

What the Family or Caregiver Can Do

• Raise patient's head and chest with pillows or by raising the hospital bed

Possible Changes in Elimination

• Decreased urine output
• Darkened urine
• Loss of bladder and bowel control

What the Family or Caregiver Can Do

• Pad bedding with layers of disposable pads
• Learn how to care for the patient's catheter, if necessary

Signs that Death Has Occurred

• Breathing stops
• Pulse stops

What the Family or Caregiver Can Do

• Call appropriate authorities in accordance with local regulations

Grieving for the Loss of a Loved One

The expected reaction of grief and sadness that occurs when someone learns of the loss of a loved one is called bereavement. When someone experiences a loss, they go through a normal process called grieving. Grieving is a natural and expected process which can allow a person to accept and understand their loss. Grieving involves feeling many different emotions over a period of time, all of which eventually help the person to come to terms with the loss of a loved one.

Bereavement and mourning are words that are commonly used to describe the grieving process. Bereavement is what a person experiences when someone close to them dies. It is the state of having suffered a loss. Mourning is the expression of one's loss and grief. Mourning includes behaviors and rituals that are specific to each person's culture and religion.

Many people think of grief as a single instance or very short period of pain or sadness in reaction to a loss-for example, the tears shed at a loved one's funeral. However, the term "grieving" refers to the entire emotional process of coping with a loss. Normal grieving allows us eventually to let a loved one go and continue with our lives in a healthy way. Though grieving is painful, it is important that those who have suffered a loss be allowed to express their grief, and that they be supported throughout the process.

Loss after Long-Term Illness

Grief is experienced somewhat differently when the loss occurs after a long-term illness rather than suddenly. When someone is seriously ill, their loved ones often grieve in anticipation of the loss. This anticipatory grief is a normal response, and it helps to prepare them for the actual loss. Usually, the period just before the person's death is one of physical and emotional preparation for those close to them. During this time, the urge to withdraw emotionally from the person who is ill is normal. For most people, the actual death brings about the beginning of the normal grieving process. Many people believe they will feel prepared for the loss when it is expected. However, when the death actually occurs, it can still be a shock and bring about unexpected feelings of sadness and loss.

Major Depression and Complicated Grief

It is common for people to experience sadness, pain, anger, bouts of crying, and a depressed mood after the death of a loved one. It is important to learn to distinguish these normal grief responses from clinical depression, as grief can lead to clinical depression. About 20% of bereaved people will develop major depression, a condition requiring medical treatment.

Family Changes

The death of a loved one affects all family members. Each family develops its own ways of coping with death. A family's attitudes and reactions are influenced by cultural and spiritual values as well as by the relationships among family members. It will take time for a bereaved family to regain its balance.

The ability of each member to grieve with one another is important in helping the family cope. Each person will experience the loss differently and have different needs. As hard as it may be, it is important for family members to remain open and honest in their communication. This is not the time for family members to hide their grief to protect one another.

The loss of one person in a family means that roles in the family will change. Family members will need to discuss the effect of this change and the shift in responsibilities. This period of reorganization is stressful for everyone. This is a time to be particularly gentle and patient with each other.

Helping Children Grieve

Some adults think that children cannot understand the meaning of death. This is not true. How old a child is at the time of the death is important because a child's understanding of death changes with age. Preschool children usually think death is temporary and reversible. Between the ages of 5 and 9, they understand that the person is gone, but see it more as a separation. After about ages 9 or 10, they begin to understand the finality of death.

Children grieve. They just don't have the coping mechanisms that adults do. They experience feelings like sadness, anger, guilt, insecurity, and anxiety. Children sometimes show anger toward surviving family members. They may develop behavior or discipline problems. They may think the death is their fault, especially if they had once "wished" the person dead. Or they may start having nightmares or acting younger than their age. Sometimes they may seem unaffected by the loss, while other times they express grief at unexpected moments.

Talking to Children about Death

It is difficult for parents to comfort others when they are experiencing their own grief. Parents may not want to discuss death with their children because they don't want to upset them or worsen their own pain. However, talking with children about death will help them deal with their fears.

Children's responses to death are often very different from adults. Sometimes a child's feelings or questions about death may seem inappropriate or be upsetting; however, it is important to recognize that they, too, are working to understand and accept what has happened. You can help them by listening to what they have to say and answering whatever questions they may have as sensitively and honestly as you can.

Use the following suggestions as a guide when talking to a child about death:

• Explain what happened in a way they can understand. Children know when you are hiding something, so be open and honest.
• Encourage communication. Listen and accept their feelings no matter how difficult it may be.
• Answer their questions in brief and simple terms. Telling them they are too young to understand only avoids dealing with the problem. It is okay to not have all the answers.
• Reassure them that they will still be loved and taken care of.
• Show affection, support, and consistency. Let them know that you will be there to help as much as possible.
• Share your feelings in terms they will understand, and in a way that won't be overwhelming. For example, it is okay to let them know that you hurt too. If you try to hide your feelings, they may think they shouldn't share theirs.

Parents want to protect their children, but children should be offered an opportunity to share in the grieving process. Attending the funeral may help them accept the reality of the death, but they should be prepared for what they will see and hear at the funeral. They should know that they may see people cry, and that it is okay. If children do not want to go to the funeral, they should not be forced.

SUPPORT OF OTHERS

For more information on these treatment guidelines, or on cancer in general, call the NCCN at 1-888-909-NCCN or the American Cancer Society at 1-800-ACS-2345. Or you can visit these organizations’ web sites at www.cancer.org (ACS) and www.nccn.org (NCCN).

© 2004 by the National Comprehensive Cancer Network (NCCN) and the American Cancer Society (ACS). All rights reserved. The information herein may not be reproduced in any form for commercial purposes or downloaded and stored in any information-retrieval system without the express written permission of the NCCN and the ACS. Single copies of each page may be printed out for personal, noncommercial use only.