A Caregiver's Guide to End of Life Care

When a loved one is nearing the end of their life, they have unique care needs and their family members also have their own needs for information and support. Questions and concerns abound during this delicate time and should be discussed with the health care team as they arise. The following information can help answer some of the preliminary questions that many patients, family members and caregivers have about end-of-life care and the dying process.

How long is my loved one expected to live?

In the case of a terminal illness, patients and their family members often want to know what their life expectancy is. This is a difficult, if not impossible, question to answer. Doctors may be able to make an estimate based on what they know about the patient’s health, but it is just an educated guess. Physicians may be hesitant to even provide an estimate out of fear of instilling false hope or destroying hope. Over- and under-estimates are very common. If you or your loved one is keen on receiving an approximation, remember that things can easily change. Avoid accepting what the doctor says as a definite timeline.

If I am caring for my loved one at home, when should I call for professional help?

It is likely that there will be times when assistance is needed from your loved one’s health care team. Contact their doctor, nurse or hospice program for help in any of the following situations. Get help if your loved one:

• is in pain that is not relieved by the prescribed dose of pain medication.
• shows discomfort, such as grimacing or moaning.
• has trouble breathing or seems upset.
• is unable to urinate or empty their bowels.
• has fallen.
• seems depressed or talks about committing suicide. 
• has difficulty swallowing medication or refuses to take medication.

In addition, family members should call for help any time they are feeling overwhelmed. If you are physically exhausted, too grieved or afraid to be with your loved one, or you are unsure how to handle a situation, do not hesitate to contact the care team. That is exactly what they are there to help you with.

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 patient experiences each of these symptoms, and that the presence of one or more of these does not necessarily indicate that a person is close to death. A member of your loved one’s health care team can give you more information about what to expect.

Drowsiness, increased sleep, and/or unresponsiveness

These symptoms are caused by changes in metabolism. If possible, it is best to plan visits and activities for times when your loved one is alert. It is important to speak directly to them and talk as if they can hear, even if they are not responsive. Most patients are still able to hear even after they can no longer speak. Do not attempt to shake or rouse your loved one if they do not respond.

Confusion, restlessness, agitation and/or visions

Your loved one may be confused about the time, their surroundings, and/or the identity of their family members. This can cause them to become restless and anxious. Hallucinations of people who are not present may also occur in some patients. Gently remind them of the time, date and people who are with them. If your loved one becomes agitated, do not attempt to restrain them. Be calm and reassuring. If their anxiety increases, contact their health care team for guidance.

Decreased socialization and withdrawal

This can be caused by decreased blood flow and oxygen to the brain and mental preparation for death. Speak to your loved one directly and let them know you are there for them. They may be aware and able to hear but unable to respond. Professionals advise that giving permission for them to “let go” can be helpful.

Reduction in or loss of appetite/thirst

At the end of life, the body needs to conserve energy. Certain processes, such as digestion, will slow and eventually stop. Allow your loved one to choose if and when to eat or drink. Ice chips and sips of water or juice may be refreshing if they can swallow. Make sure to keep their mouth and lips moist with products such as glycerin swabs and lip balm.

Loss of bladder or bowel control

Keep your loved one as clean, dry and comfortable as possible. Place disposable pads on the bed beneath them and remove them when they become soiled. Their health care team will instruct you on the best products and techniques to use.

Darkened urine or decreased urination

This is cause by decreased fluid intake and reduced kidney function. In some cases, a catheter may be appropriate for preventing blockages. A member of your loved one’s health care team can provide instructions on how to take care of the catheter if one is needed.

Cool and/or discolored skin

Your loved one’s skin may become bluish in color, especially on the underside of the body and the extremeties. This is caused by decreased circulation. Although their skin may be cool to the touch, they may not actually feel cold. Blankets can be used for warmth, but avoid using electric blankets or heating pads, which can cause burns.

Irregular breathing patterns and/or new sounds while breathing

Changes in breathing are very common. Your loved one’s breathing may become shallow, alternate between rapid and slow, and be accompanied by rattling or gurgling sounds. They may be able to breathe easier when lying on their side with pillows placed beneath their head and behind their back. Although labored breathing can sound very distressing, gurgling and rattling sounds do not cause discomfort to the patient. An external source of oxygen may benefit some patients. If your loved one is able to swallow, ice chips may also help. A cool mist humidifier may provide added comfort as well.

Changes in vision

Your loved one may turn their head directly toward a light source due to a decrease in eyesight. Try to leave soft, indirect lights on in their room to avoid glare and help them see.

Increased difficulty controlling pain

It is important to provide pain medications as your loved one’s doctor has prescribed. Be sure to contact the doctor if the prescribed dosage does not seem effective. The health care team can also suggest other methods for pain management, such as massage and relaxation techniques.

Other physical changes

Involuntary movements (called myoclonus), changes in heart rate and loss of reflexes in the legs and arms are additional signs that the end of life is near.

How can caregivers provide emotional support to dying loved ones?

Each person has different needs, but some emotions are common during this time. These include fear of abandonment and fear of being a burden. Your loved one may also have concerns about loss of dignity and loss of control. Caregivers can provide comfort in some of the following ways:

• Keep them company. Talk, watch movies, read aloud or just be with them.
• Allow them to express their fears and concerns about dying, such as leaving family and friends behind. Be prepared to listen. On the other hand, be respectful if your loved one does not wish to discuss these things or seem talkative. Follow their lead.
• Be willing to reminisce about their life. 
• Avoid withholding difficult information. Most patients prefer to be included in discussions about issues that concern them.
• Reassure them that you will honor the arrangements they have made and the preferences they have documented, including advance directives, burial wishes, etc. 
• Ask them if there is anything you can do for them.
• Respect their need for privacy.

What are the signs that a person has died?

• There is no breathing or pulse.
• The eyes do not move or blink, and the pupils are dilated (enlarged). The eyelids may be slightly open.
• The jaw is relaxed and the mouth is slightly open.
• The body releases bowel and bladder contents.
• The patient does not respond to being touched or spoken to.

What needs to be done after my loved one has died?

After they have passed away, there is no need to hurry with arrangements. You and other family members may wish to sit with them, talk or pray. Take your time. When everyone is ready, the following steps can be taken.

• Place your loved one on their back with one pillow under their head. You may wish to close their eyes, and put their dentures or other artificial parts in place.
• If your loved one was receiving hospice care, follow the guidelines outlined by your provider. A hospice nurse will usually arrive to verify the patient’s death and help you through the next steps.
• Contact the appropriate authorities in accordance with local regulations. If your loved one requested not to be resuscitated through a do-not-resuscitate (DNR) order or similar mechanism, make their wishes known. If local ordinances require that you call 911, be sure to tell the dispatch operator that your loved one has died, the death was expected and that this is not an emergency.
• Contact your loved one’s doctor and funeral home.
• When you and your family are ready, contact other family members, close friends and clergy.