When you are caring for a loved one who has advanced cancer, you may be there at the time of death. The following covers common events that often happen near the end of life. Knowing more about what to expect may help ease some of the anxiety around events that might otherwise be alarming. This section lists some signs that death may be close.

People often use this time to gather the family to say goodbye to their loved one. They may take turns with the patient, holding hands, talking to the patient, or just sitting quietly. It can also be a time to perform any religious rituals and other activities the patient wants before death. It is a chance for many families and friends to express their love and appreciation for the patient and for each other.

It is important to have a plan for what to do after death, so that people will know what to do during this very emotional time. If the patient is in hospice, the hospice nurse and social worker will help you. If the patient is not in hospice, talk with your doctor about it so that you will know what to do at the time of death. (See the section on hospice care.) Not all of the following symptoms will happen, but it may be comforting to know about them.

For more information on what to expect when death is approaching, see Nearing the End of Life.

What to look for

• Profound weakness – usually the patient cannot get out of bed and has trouble moving around in bed
• Patient needing help with nearly everything he does
• Less and less interest in food, often with very little food and fluid intake for days
• More drowsiness – the patient may doze or sleep much of the time if the pain is relieved or may be hard to rouse or wake
• Restless and picking or pulling at bed linens
• Anxiety, fear, restlessness, and loneliness that may be worse at night
• A short attention span from the patient, who may not be able to focus on what is happening
• Confusion about time, place, or people
• Trouble swallowing pills and medicines
• Limited ability to cooperate with caregiver

Possible changes in body function

• Weakness – has trouble moving around in bed and most likely is not able to get out of bed
• Cannot change positions without help
• Trouble swallowing food, medicines, or even liquids
• Sudden movement of any muscle, jerking of hands, arms, legs, or face

What caregivers can do

• Help patient turn and change positions every hour or 2.
• Avoid sudden noises or movements to lessen the startle reflex.
• Speak in a calm, quiet voice to reduce your chances of startling the patient.
• If the patient has trouble swallowing pain medicines, ask the doctor or hospice nurse about getting liquid pain medicines or a pain patch.
• If the patient is having trouble swallowing, avoid solid foods. Give ice chips or sips of liquid through a straw.
• Do not push the patient to drink fluids. Near the end of life, some dehydration is normal and is more comfortable for the patient.
• Apply cool, moist cloths to the patient's head, face, and body for comfort.

Possible changes in consciousness

• More sleeping during the day
• Hard to wake or rouse from sleep
• Confusion about time, place, or people
• Restless – may pick or pull at bed linens
• May talk about things unrelated to the events or people present
• May be more anxious, restless, fearful, and lonely at night
• After a period of sleepiness and confusion, may have a short time when he is mentally clear before going back into semi-consciousness

What caregivers can do

• Plan your times with the patient when he is most alert or during the night when your presence may be comforting.
• When talking with the patient, remind him who you are and what day and time it is.
• Continue pain medicines up to the end of life.
• If patient is very restless, try to find out if he is having pain. If it appears so, give breakthrough pain medicines as prescribed, or check with the doctor or hospice nurse if needed. (See the section on pain.)
• When talking with a confused person, use calm, confident, gentle tones to reduce the chances of startling or frightening the patient.
• Touching, caressing, holding, and rocking are usually helpful and comforting.

Possible changes in metabolism

• Less interest in food (The patient has less need for food and drink.)
• Mouth may dry out (See "Possible changes in secretions" in this section.)
• May no longer need some of his medicines, such as vitamins, chemo, replacement hormones, blood pressure medicines, and diuretics, unless they help make the patient more comfortable.

What caregivers can do

• Apply lubricant or petroleum jelly (such as Vaseline^®) to the lips to prevent drying.
• Offer ice chips from a spoon, or sips of water or juice from a straw. These may be enough for the patient.
• Check with the doctor to see which medicines may be stopped. Medicines for pain, nausea, fever, seizures, or anxiety should be continued to keep the patient comfortable.

Possible changes in secretions

• Mucus in the mouth may collect in the back of the throat. (This can be a very distressing sound to hear, but it usually isn't uncomfortable to the patient.)
• Secretions may thicken due to a lower fluid intake and build up because the patient cannot cough

What caregivers can do

• If mouth secretions increase, keep them loose by adding humidity to the room with a cool mist humidifier.
• If the patient can swallow, ice chips or sips of liquid through a straw may thin the secretions.
• Change the patient's position. Turning the patient to the side may help secretions drain from the mouth. Continue to clean the patient's teeth with a soft toothbrush or soft foam mouth swabs.
• Certain medicines may help – ask your hospice or home care nurse.

Possible changes in circulation and temperature

• Arms and legs may feel cool to the touch as circulation slows down.
• Skin of arms, legs, hands, and feet may darken in color and look blue or mottled (blotchy).
• Other areas of the body may become either darker or paler.
• Skin may feel cold and either dry or damp.
• Heart rate may become fast, faint, or irregular.
• Blood pressure may get lower and hard to hear.

What caregivers can do

• Keep patient warm with blankets or light bed coverings.
• Avoid use of electric blankets, heating pads, etc.

Possible changes in senses and perception

• Vision may become blurry or dim
• Hearing may decrease, but most patients are able to hear you even after they can no longer speak

What caregivers can do

• Leave indirect lights on as vision decreases.
• Never assume the patient cannot hear you.
• Continue to speak with and touch the patient to reassure him of your presence. Your words of affection and support are likely to be understood and appreciated.

Possible changes in breathing

• Breathing may speed up and slow down due to less blood circulation and build-up of waste products in the body
• Mucus in the back of the throat may cause rattling or gurgling with each breath
• The patient may not breathe for periods of 10 to 30 seconds

What caregivers can do

• Put the patient on his back, or slightly to one side.
• Raising the patient's head may give some relief.
• Use pillows to prop up the patient's head and chest at an angle, or raise the head of a hospital bed.
• Any position that seems to make breathing easier is OK, including sitting up with good support. A small person may be more comfortable in your arms.

Possible changes in elimination

• Smaller amounts of urine, which may be darker in color
• When death is near, loss of control of urine and stool

What caregivers can do

• Pad the bed beneath the patient with layers of disposable waterproof pads.
• If patient has a catheter, the home health nurse will teach you to care for it.

Signs that death has occurred

• Breathing stops
• Blood pressure cannot be heard
• Pulse stops
• Eyes stop moving and may stay open
• Pupils of the eyes stay large, even in bright light
• Control of bowels or bladder is lost as the muscles relax

What caregivers can do

• After death occurs, it is OK to sit with your loved one for a while. There is no rush to get anything done right away. Many families find this is an important time to pray or talk together and reconfirm your love for each other as well as for the person who has passed away.

• If the patient dies in the home, caregivers are responsible for calling the proper people. Regulations or laws about who must be notified and how the body should be moved differ from one community to another. Your doctor or nurse can get this information for you. If you have a hospice or home care agency involved, call them. If you have completed funeral arrangements, calling the funeral director and doctor are usually all you have to do.

An important note: If you call 911 or Emergency Medical Services (EMS), even after an expected death at home, the law often requires that EMS try to revive the patient or take them to a hospital. This can complicate the situation and delay funeral plans. Be sure that family and friends are ready and know exactly whom to call, so that they don't dial 911 in confusion or panic.

Through the information presented here, we have tried to prepare you for some of the problems and concerns you may face. We've also tried to make a few suggestions for coping with some of the stresses that may come with caring for a person with cancer at home. If you or your family need more information, please call us anytime, day or night, at 1-800-227-2345. We have cancer information specialists who can help you with your questions and help you find the resources you need.

Go back to Caring for the Patient with Cancer at Home: A Guide for Patients and Families.

Last Medical Review: 04/27/2009
Last Revised: 04/27/2009