Care Through the Final Days

Approved by the Cancer.Net Editorial Board, 05/2019

As a person nears the end of his or her life, it is difficult to know what to expect. Responsibilities of caregivers may differ based on where the person with cancer is receiving care. For example, providing care at home instead of a hospital or hospice facility may include more responsibilities for caregivers. Regardless of the situation, the health care team will provide the best care possible through the end of life. And, they will do everything possible to ensure that the person dying is comfortable.

Signs of approaching death

Death from cancer usually occurs after a person has become weaker and more tired over several weeks or months. It is not always possible to predict how long someone will live. But some common signs and symptoms show that a person is entering the final weeks and days of life. Knowing what to expect helps relieve anxiety and allows better planning.

The following are signs and symptoms that suggest a person with cancer may be entering the final weeks of life:

Worsening weakness and exhaustion.
A need to sleep much of the time, often spending most of the day in bed or resting.
Weight loss and muscle thinning or loss.
Minimal or no appetite and difficulty eating or swallowing fluids.
Decreased ability to talk and concentrate.
Little interest in doing things that were previously important.
Loss of interest in the outside world, news, politics, entertainment, and local events.
Wanting to have only a few people nearby and limiting time spent with visitors.

As the last days of life approach, you may see the following signs and symptoms:

Breathing may slow, sometimes with very long pauses between breaths.
Noisy breathing, with congestion and gurgling or rattling sounds as the person becomes unable to clear fluids from the throat. These sounds may concern others, but the person who is dying is not aware of them.
Cool skin that may turn a bluish, dusky color, especially in the person’s hands and feet.
Dryness of mouth and lips.
Decreased amount of urine.
Loss of bladder and bowel control.
Restlessness or repetitive, involuntary movements.
Confusion about time, place, and identity of people, including family members and close friends.
Seeing or hearing people or things that are not there. This is common and usually normal. It is not a cause for concern unless these hallucinations scare or upset the person who is ill. These dream-like experiences often include traveling, preparing for travel, or being welcomed by people who have died.
A tendency to drift in and out of consciousness and gradually becoming less and less responsive to touch or voice.

Of course, every person is different. The signs and symptoms that people experience vary. And the order in which signs and symptoms occur may differ.

Providing comfort

Family members and caregivers can help the person who is ill become more comfortable during this time. The person’s doctors and nurses can guide you through steps based on the person’s specific condition and needs. Here are some general guidelines for providing comfort:

Use an “eggshell” mattress or foam cushions to make beds and chairs more comfortable.
Help the person change positions frequently.
Change bedsheets at least twice a week or more often, as necessary.
Elevate the person's head, if doing so is comfortable, or turn the person onto his or her side to help make breathing easier.
Use blankets to help keep the person warm. Do not use electric blankets because they can cause burns. Gently rub the person's hands and feet or soak them in warm water if it is comforting.
Speak in a clear, calm voice, and remind the person of the time, place, and people present. This may help ease confusion and disorientation. But such steps may not help if the person has mental confusion.
If the person is withdrawn or unresponsive, say things that are supportive and reassuring but that do not require a response. Instead of saying, “How are you?” consider saying things such as:

“Everything is alright.”
“We are here with you.”
“We are supporting one another.”
“We love you.”

Offer sips of liquid through a straw or from a spoon, if the person can swallow. This will help to keep the person’s mouth moist. Glycerin swabs and lip balm also help with dry mouth and lips.
Massage the person’s body gently if it seems soothing. This can be comforting and improve blood circulation. Use a moistening lotion to soothe and alleviate dry skin. Avoid alcohol-based lotions, which can further dry the person’s skin.
Be there. Sometimes, the best ways to comfort and reassure include sitting with the person, talking, offering gentle touch, or holding the person’s hands. Such steps not only help ease loneliness but also can be healthy expressions of love for the person who is dying.

Easing pain

Severe pain often makes it hard for a person to feel comfortable and at peace as he or she dies. Cancer causes pain in many different ways, but there are ways to treat the pain. Uncontrolled pain often worsens other symptoms, such as fatigue and confusion. These symptoms make it more difficult to concentrate on time spent with family members and friends.

Talk with a member of your health care team who specializes in pain control or palliative care. He or she can help find an effective pain-relief strategy. This may require careful planning and communication with several members of the health care team.

Learn more about treating pain with medication and additional ways to manage pain.

Calling for help

The person with cancer and the caregivers must know whom to call with questions about pain and if they need urgent help. If you are caring for someone with cancer at home, ask the person’s doctor(s) or the hospice or home care staff when and whom to call for help. Some situations that require assistance from professionals and a health care team include:

The person has pain that is difficult to manage or relieve.
The person is unable to take prescribed medications.
The person shows signs of distress, such as breathing problems or agitation.
The person has a sudden change in consciousness, becoming less responsive or confused, or has a seizure.
Caregivers at home are overwhelmed by the person’s condition and needs.

Respecting personal choices

Find out ahead of time if the person you are caring for created an advance directive. There are 2 types of advance directives:

A health care power of attorney is a person the patient selects to make health care decisions if he or she is unable to. This person may also be called a health care proxy, agent, or surrogate.
A living will is a document that lists the type of medical treatments the patient does or does not want at the end of life. For example, some people nearing the end of life choose to refuse artificial life support, such as mechanical respirators or a feeding tube. Or, they request a do not resuscitate (DNR) order. This order states that the person should not have CPR performed if his or her breathing or heartbeat stops.

Caregivers and others who care about the person may not always agree with the decisions in an advance directive. But people with an advanced illness need to know their final wishes will be respected. As a caregiver, following the advance directive is one of the most important things you can do to help the person die with dignity and peace of mind.

If the person has a DNR order, inform any emergency personnel if you need to call 911 or another emergency line. Learn more about DNR orders and CPR.

Organizing practical matters

Organizing practical matters in advance lowers some of the stress of caregiving. It also helps caregivers concentrate on spending time with the person who is dying. The following are some tips that may help you organize your time and focus your efforts:

Compile a list of important papers that may be needed and where they are. These could include bank accounts, real estate, stock holdings, and passwords to accounts and online banking.
Make a list of people the person would like to see in the final weeks.
Consider who should be present at or around the time of death. For example, decide whether a clergy member or other spiritual leader should be at the bedside to provide comfort or perform important rituals.
Make a list of people to call after death occurs. And ask a friend or relative to help make those calls.
Choose a funeral home and notify the facility that a death is expected in the near future. Most hospices will call the funeral home for you.
Make sure you understand the person’s wishes for funeral and burial services, such as cremation.
Notify hospital or hospice staff of cultural or religious customs about death so that they can accommodate them. This may include people who should be present before and after the time of death. Or, it may include special customs regarding washing, dressing, or caring for the body after death.

Understanding what happens immediately after death

When death occurs, the person's muscles will relax, breathing will stop, the heart will stop beating, and there will be no pulse.

Even when death is expected, it is common—and normal—for caregivers to feel a sense of shock and disbelief. Although home health or hospice staff and the person's doctor should be notified, a natural death is not an emergency. There is usually no need to call medical personnel immediately. Many people find it comforting to take some time to sit with their loved one, perhaps talking quietly, holding hands, or watching their loved one at peace.