This section has been written for the caregiver, but many patients want this same information for themselves. It lists some signs that death may be close and gives the caregiver suggestions for what they may do to help.

This is the time to gather the family to say final goodbyes 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 the family can 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. Not all of the following symptoms will happen, but it may help you to know about them.

Possible changes in body function

• profound weakness -- usually the patient cannot get out of bed and has trouble moving around in bed

• needs help with nearly everything he or she does. May be unable to change positions without help

• less and less interest in food, often with very little food and fluid intake for days

• trouble swallowing pills and medicines

• more drowsiness--the patient may doze or sleep much of the time if pain is relieved. May be restless and pick or pull at bed linens. May be hard to rouse or wake. Anxiety, fear, restlessness, and loneliness may worsen at night

• cannot concentrate, has short attention span

• confused about time, place, or people

• limited ability to cooperate with caregivers

• involuntary movement of any muscle, jerking of hands, arms, legs, or face

What caregivers can do

• Help the 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 the 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.

• Do not push fluids. Near the end of life, some dehydration is normal. It is also more comfortable for the patient.

• Apply cool, moist wash cloths to 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 linen

• may talk about things unrelated to the events or people present

• may have more anxiety, restlessness, fear, and loneliness at night

• after a period of sleepiness and confusion, may have a short time when he or she is mentally clear before going back into semi-consciousness

What caregivers can do

• Plan being with the patient when he or she is most alert or during the night when your presence may be comforting.

• When talking with the patient, remind her or 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 they are having pain. If they are, 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 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 the next section on changes in secretions)

• may no longer need some of his or her medicines, such as vitamins, replacement hormones, blood pressure medicines, and diuretics (unless they help make the patient more comfortable)

What caregivers can do

• Put lubricant or petroleum jelly (Vaseline^®) on the lips to prevent drying.

• Ice chips from a spoon, or sips of water or juice from a straw 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 may be a very distressing sound to hear, but doesn't usually cause discomfort to the patient.)

• secretions may thicken due to less fluid intake and build up because the patient cannot cough

What caregivers can do

• If the mouth secretions increase, keep them loose by adding humidity to the room with a cool mist humidifier.

• If the patient can swallow, give ice chips or sips of liquid through a straw. This may help thin secretions.

• Change the patient's position -- turning them onto the side may help secretions drain from the mouth. Continue to clean teeth with a soft toothbrush or soft foam mouth swabs.

• Certain medicines may help. Ask your doctor or hospice nurse about them.

Possible changes in circulation and temperature

• • arms and legs may feel cool to the touch as circulation slows down

• skin on arms, legs, hands, and feet may darken in color and look mottled (blotchy dark spots)

• 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 become hard to hear

What caregivers can do

• Keep the patient warm with blankets or light bed coverings.

• Avoid using 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.

• Always assume the patient can hear you.

• Continue to speak with and touch the patient to reassure them 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 up 10 to 30 seconds

What caregivers can do

• Put the patient on their back, or slightly to one side.

• Raising the patient's head may give some relief.

• Use pillows to prop 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

• urine may become darker and decrease in amount

• when death is near, the patient may lose control of urine and stool

What caregivers can do

• Pad the bed beneath the patient with layers of disposable waterproof pads.

• If the patient has a catheter, the 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 it is all right if you 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 their love for each other, as well as for the person who has passed away.

If the patient dies at home, caregivers are responsible for calling the appropriate 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 that 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.

Last Medical Review: 04/19/2009
Last Revised: 05/06/2009