Stages of Dying

Fear of the unknown makes death and dying a mysterious and sometimes frightening event. Being afraid of death often causes patients or families to forgo hospice care, fearing they could not be there to support their loved one through this process.

Understanding the common symptoms and how to deal with them can help alleviate these fears. The hospice team holds many a hand through this process and helps patients die with dignity in their own home surrounded by those they love.

The dying person usually experiences a feeling of detachment from his physical world. He loses interest and prefers to sleep more. Talking is not important and he begins to let go. There is a loss of appetite. At first, he may still agree to take small bites of soft foods or liquids and then will begin to refuse any food. This is often difficult for caregivers to accept; food is commonly associated with comfort and lack of food with starving and hunger pains.

The mouth can become very dry. To help with this, the caregiver can wet the lips and mouth with a few drops of water from an eyedropper or a straw, or place a few ice chips inside the cheek or feed with a spoon. A sponge-tipped applicator can be dipped in water and placed in the mouth inside the cheek used to swab out the mouth. Sometimes these come in a lemon flavor. Some patients like this and others do not. Body language and facial expressions will give you an indication if there is a preference or not.

Lip balm can help protect and moisturize the lips. Good mouth hygiene can help as well. Use a small dab of toothpaste on a damp cloth or sponge-tipped applicator and wipe the teeth on both sides. Gently wipe the tongue, but be careful of the gag reflex.

The truth is that food and fluids can become painful and even harmful to the dying patient. As the body shuts down, nourishment is no longer necessary. Digestion is slowed and a feeling of bloating and fullness can create pain and nausea. Difficulty swallowing can cause food or fluids to enter the lungs instead of the stomach and cause a form of pneumonia.

Bowel and Bladder Function

In the early stages of active dying, it is important to prevent constipation and fecal impaction. Sometimes laxatives or suppositories are needed to counteract the effects of immobility, pain medication, and a decreased fluid intake. If the bowels have been active, it is normal for bowel activity to decrease after there has been no intake for a few days.

Urine will become much more concentrated and tea colored. Urinary incontinence is quite common, and diapering or having a urinary catheter inserted will help keep the patient from soiling bed linens.

Hallucinations and Visions

The patient may hallucinate or have visions. It is quite normal for them to “see” and have conversations with friends and relatives who have preceded them in death. Sit quietly and let them be comforted and reassured by these visions.

If they are disturbed or frightened by their visions, they may actually be having bad dreams and may need to have medications adjusted to correct this.

Terminal Agitation

At some point, they may experience what is referred to as “terminal delirium” or “terminal agitation.” This is characterized by a sudden confusion, restlessness, or agitation. This is usually due to normal factors associated with dying such as a reduction in oxygen to the brain, pain medications, metabolic changes, and dehydration. This is not a painful experience for the patient, but it can be distressing to caregivers and loved ones. It often happens late at night when everyone is exhausted and has no patience for this newfound energy.

Patients become fidgety; they pick and pull at things. They might pull out catheters and other tubes, and sometimes they climb over bedrails to get out of bed. They suddenly have seemingly twice your physical strength. Safety can be an issue; don't try to fight with them, but gently coax them back into bed.

This usually happens at a time when they are very close to death. It can be exacerbated if they have some unfinished business to attend to. If you can figure out what this unfinished business is and help them find a sense of security and closure, they will relax. This is often very difficult to achieve, as they are not usually coherent. There are several things you can do:

  • Speak in a soft, gentle voice and use a gentle touch.

  • Identify yourself and be patient. He may not recognize you and may think you are someone else.

  • If medication was prescribed for restlessness, now is the time to give it.

  • Go along with the cues he's giving you and offer support. Try to help him settle unfinished business.

  • Light massage and soft music may help to calm him down.

Relax and try to be patient. You aren't going to get sleep right now, but you will later. You are probably exhausted; if someone else is available to help you or to take turns, ask them to do so. This agitated state may last a few minutes to several hours. It may become a nightly event for a few days until she feels she has settled her business.

Changes in Breathing

As death nears, changes in breathing patterns will occur. It may become quick and shallow or very slow and labored. There may be some gurgling sounds as well. This is often referred to as a “death rattle.” There may be a pool of secretions the patient can no longer cough up. If they are pooling in the mouth you can gently wipe out the mouth with a soft, moist cloth or sponge-tipped swab and turn the head so they can drain out.

Another pattern of breathing that may happen is called Cheyne-Stokes breathing. This is characterized by periods of no breathing for about thirty to forty-five seconds followed by a few deeper yet rapid respirations. This breathing pattern is due to a decrease in oxygen and a build up of carbon dioxide and other wastes in the body. It is not painful or uncomfortable, but can be disturbing to witness.

Don't panic. Raise the head of the bed slightly or place another pillow under his head to help his breathing. Speak softly and use a gentle touch to reassure him. Notify the physician or hospice nurse of this change in breathing. Remember that mouth breathing can make the mouth dry. Moisten the lips and mouth for comfort.

Skin Temperature and Color

In the last stages of dying, blood and oxygen are more concentrated in the vital organs and less in the extremities. You'll find evidence of this in the fact that the arms and legs may be cool or even cold to touch, and yet the abdomen is still warm. The nose may be ice cold and the lips may take on a bluish tint.

You may also begin to notice small little blue-purplish blotches on the legs, arms, and backside. This mottling is due to blood collecting in dependent areas. As death nears, the skin may become yellowish and take on a waxen appearance.

Keep your parent as comfortable as possible. If she is kicking the covers off, she may be too hot. You can help cool her by wiping her with a cool, damp washcloth. A fan to circulate air can also be comforting. If she's cold, add another blanket. Don't use electric blankets or heating pads, as these can cause burns.

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