Death and Dying, End-of-Life Care

When a person's health care team determines that a terminal illness can no longer be controlled, medical testing and treatment often stop. But the person's care continues. The care focuses on making the person comfortable. The person receives medicines and treatments to control pain and other symptoms, such as constipation, nausea, and shortness of breath. Some people remain at home during this time, while others enter a hospital or other facility. Either way, services are available to help individuals and their families with the medical, psychological, and spiritual issues surrounding dying. A hospice team often provides such services.

The time at the end of life is different for each person. Each individual has unique needs for information and support. Questions and concerns about the end of life should be discussed with the health care team as they arise.

HOW LONG IS THE PERSON EXPECTED TO LIVE?

Individuals and their family members often want to know how long a person is expected to live. This is a hard question to answer. Factors such as where the disease is located and whether the person has other illnesses can affect what will happen. Although health care providers may be able to make an estimate based on what they know about the person, they might be hesitant to do so. Health care providers may be concerned about overestimating or underestimating the person's life span. They also might be fearful of instilling false hope or destroying the person's hope.

WHEN CARING FOR THE PERSON AT HOME, WHEN SHOULD YOU CALL A PROFESSIONAL?

When caring for your loved one at home, there may be times when you need assistance from your loved one's health care team. You can contact the health care team for help in any of the following situations:

  • Your loved one is in pain that is not relieved by the prescribed dose of pain medicine.  

  • Your loved one shows discomfort, such as grimacing or moaning.  

  • Your loved one is having trouble breathing and seems upset.  

  • Your loved one is unable to urinate or empty the bowels.  

  • Your loved one has fallen.  

  • Your loved one is very depressed or talking about committing suicide.  

  • You have difficulty giving medicine to your loved one.  

  • You are overwhelmed by caring for your loved one or are too grieved or afraid to be with your loved one.  

  • At any time you do not know how to handle a situation.  

WHAT ARE SOME WAYS THAT YOU CAN PROVIDE EMOTIONAL COMFORT TO YOUR SICK LOVED ONE?

Everyone has different needs, but some emotions are common to most individuals who are dying. These include fear of abandonment and fear of being a burden. They also have concerns about loss of dignity and loss of control. Some ways you can provide comfort are as follows:

  • Keep your loved one company. Talk, watch movies, read, or just be with him or her.  

  • Allow your loved one to express fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen.  

  • Be willing to reminisce about your loved one's life.  

  • Avoid withholding difficult information. Most people prefer to be included in discussions about issues that concern them.  

  • Reassure your loved one that you will honor advance directives, such as living wills.  

  • Ask if there is anything you can do.  

  • Respect your loved one's need for privacy.  

WHAT ARE THE SIGNS THAT DEATH IS APPROACHING?

Certain signs and symptoms can help you anticipate when death is near. They are described below, along with suggestions for managing them. It is important to remember that not every person experiences each of the signs and symptoms. Having one or more of these symptoms does not always indicate that your loved one is close to death. A member of your loved one's health care team can give you information about what to expect.

  • Drowsiness, increased sleep, or unresponsiveness. This is caused by changes in the person's metabolism.  

  • Confusion about time, place, or identity of loved ones; restlessness; visions of people and places that are not present; pulling at bed linens or clothing (caused in part by changes in your loved one's metabolism).  

  • Withdrawal and decreased socialization. This may be caused by decreased oxygen to the brain, decreased blood flow, and mental preparation for dying.  

  • Decreased need for food and fluids, and loss of appetite. This is caused by the body's need to conserve energy and its decreasing ability to use food and fluids properly.  

  • Loss of bladder or bowel control. This is caused by the relaxing of muscles in the pelvic area. You can talk to your loved one's health care team about the possibility of inserting a catheter. A member of the health care team can teach you how to take care of the catheter, if one is needed.  

  • Skin becomes cool to the touch, particularly the hands and feet. Skin may become bluish in color, especially on the underside of the body. This is caused by decreased circulation to the extremities.  

  • Rattling or gurgling sounds while breathing that may be loud; breathing that is irregular and shallow; decreased number of breaths per minute; breathing that alternates between rapid and slow. This is caused by congestion from fluid, a buildup of waste products in the body, and a decrease in circulation to the organs.  

  • Turning the head toward a light source. This is caused by decreasing vision. Leave soft, indirect lights on in the room.  

  • Increased difficulty controlling pain. This is caused by progression of the disease. It is important to provide pain medicines as your loved one's health care provider has prescribed.  

  • Involuntary movements, changes in heart rate, and loss of reflexes in the legs and arms are also signs that the end of life is near.  

WHAT CAN YOU DO TO MAKE THE PERSON COMFORTABLE?

  • Plan visits and activities for times when your loved one is alert. It is important to speak directly to your loved one and talk as if he or she can hear, even if there is no response. Most people are still able to hear after they are no longer able to speak. Your loved one should not be shaken if he or she does not respond.  

  • Gently remind your loved one of the time, date, and people who are present. If your loved one is agitated, do not attempt to restrain him or her. Be calm and reassuring. Speaking calmly may help to re-orient your loved one.  

  • Allow your loved one to choose if and when to eat or drink. Ice chips, water, or juice may be refreshing if the person can swallow. Keep the person's mouth and lips moist with products such as glycerin swabs and lip balm.  

  • Keep your loved one as clean, dry, and comfortable as possible. Place disposable pads on the bed beneath the person and remove them when they become soiled.  

  • Reposition your loved one's body from one side to the back to the other side every few hours to prevent bed sores. Try to minimize pressure under heels and elbows by placing a pillow or foam pads where needed.

  • Blankets can be used to warm your loved one. Although your loved one's skin may be cool, he or she is usually not aware of feeling cold. You should avoid warming your loved one with electric blankets or heating pads. These can cause burns.  

  • Breathing may be easier if you turn your loved one's body to the side and place pillows beneath the head and behind the back. Although labored breathing can sound very distressing to you, gurgling and rattling sounds do not cause discomfort to your loved one. An external source of oxygen may benefit some individuals. If your loved one is able to swallow, ice chips also may help. In addition, a cool mist humidifier may help make your loved one's breathing more comfortable. You may also try a fan to circulate the air. 

  • Contact the health care provider if the prescribed pain-relieving medicine dose does not seem adequate. With the help of the health care team, you can also explore methods such as massage and relaxation techniques to help with pain.  

WHAT ARE THE SIGNS THAT THE PERSON HAS DIED?

  • There is no breathing or pulse.  

  • The eyes do not move or blink, and the pupils are enlarged (dilated) and do not change with light. The eyelids may be slightly open.  

  • The jaw is relaxed, and the mouth is slightly open.  

  • The body releases the bowel and bladder contents.  

  • The person does not respond to being touched or spoken to.  

WHAT SHOULD HAPPEN AFTER THE PERSON HAS DIED?

After the person has passed away, there is no need to hurry with arrangements. You, family members, and close friends may wish to sit with the person, talk, or pray. When the family is ready, the following steps can be taken:

  1. Place your loved one on his or her back with one pillow under the head. If necessary, you may wish to put your loved one's dentures or other artificial parts in place.  

  2. If your loved one is in a hospice program, follow the guidelines provided by the program. You can request a hospice nurse to verify the person's death.  

  3. Contact the appropriate authorities in accordance with local regulations. If your loved one has requested not to be resuscitated through a Do Not Resuscitate (DNR) order or other mechanism, do not call 911.  

  4. Contact your loved one's health care provider and funeral home.  

  5. When your loved one's family is ready, call other family members, friends, and clergy.  

  6. Provide or obtain emotional support for family members and friends to cope with their loss.

FOR MORE INFORMATION

  • National Hospice and Palliative Care Organization: www.nhpco.org

  • National Institute on Aging: www.nia.nih.gov