Abridged article by Charles Kemp.
Based on the recommended book, "Terminal Illness: A Guide to Nursing Care"
(go to resources)

The Process of Dying
Many families worry about how they will know when the person is actually dying as opposed to being sick. It is difficult to get an answer to the question of when because everyone in this work has seen people live for a longer or a shorter time than expected.
In general, as death nears, there is seldom a sudden dramatic increase in pain. Some people become confused or agitated in the last days or weeks of life. Regardless of mental status, at least some degree of social withdrawal is common.The person who is dying is facing eternity, and social interaction, or at least conversation, may be less important than before. However, the presence of loved ones remains very important. Drowsiness or coma is common in the last few days.

Process and Care During the Last Days
Loss of Appetite
Most people become anorexic or lose their appetite in the last weeks, or in some cases, months of life. It is common for family members to have a strong desire to give food even to patients too weak to eat. Rather than force or push food on a person who does not want it, offer small amounts of fluids from a favorite glass. If the person is completely unable to swallow, moisten his or her lips. In all cases, stay with the person.

Fluid Intake and Dehydration
Many people refuse to drink in their final days or hours. As with food, this may be a way of adapting to the body's diminished ability to function. Indeed, in recent years, we have learned that dehydration in the last days of life is often less of a problem than is over-hydration. Dry mouth and thirst are the greatest problems from decreased fluids in the last days of life.

When a person refuses fluids, it is necessary to give frequent oral care (at least every two hours and more often if the person is breathing through his or her mouth). Care consists of keeping the inside of the mouth moist by giving occasional very small sips of fluid (one-two drops) Lips may be kept moist with lightly applied creams. The mouth should be cleaned at least every eight hours.

Anxiety and Depression
The approach of death is highly distressing to some patients, resulting in increased anxiety or depression which may be treated with a variety of drugs.

New onset depression or anguish may have to be treated with sedation as the goal (because of the delay in therapeutic effects in antidepressant medications). Spiritual measures should also be instituted in many cases.

Respiratory Changes
Changes in respiratory status are common in imminently terminal patients. Breathing usually becomes increasingly shallow and/or labored as death nears. There may be brief periods in which the person stops breathing, then starts again. Respirations may slow. Some people, especially those who are well-hydrated, have increased fluid in their lungs and difficulty managing the fluids, i.e., they may have difficulty coughing or swallowing effectively.
Suctioning, a standard procedure in critical care units, seldom increases the quality or length of life for people who are close to death. The procedure is often traumatic to the person and relief from secretions tends to be only temporary. The person's room should be cool and well-ventilated, and a slight cool breeze from a fan to the person's face helps. The person can be positioned on his or her side so that lung secretions do not pool; or in other cases, elevating the head may help.

Dreams
In the last weeks of life many patients begin to have vivid dreams about loved ones who have died previously. These dreams tend to be comforting or evoke nostalgia. Some people also dream of dying or having died. In most cases these dreams are either comforting or are more or less neutral in effect. There is a kind of matter-of-fact response to these dreams of dying or death; and they ultimately are comforting. Many people will not report or tell about their dreams unless specifically asked. It is thus a good idea to ask about dreams; and ask the person to tell about them in as much detail as possible.

Coma and Changes in Consciousness
Most people become drowsy or comatose; and some become confused or agitated. If possible, confusion or agitation is treated according to the cause, poorly managed pain can cause confusion, especially in older patients. Palliative (or terminal) sedation may be used especially pain or unrelieved anguish when the patient is imminently terminal. Palliative sedation used before the last days is also ethically acceptable to some, but not all experts in the field. The problem with palliative sedation in earlier stages is that the patient is sedated to the extent of being unable to eat or drink and death may thus occur from dehydration or malnutrition as a result of medications.

Symptoms Before and After Changes in Consciousness
Unless there is a strong reason to change treatments or medications, symptoms such as pain, nausea, anxiety, etc. are treated as they were prior to the patient's change in consciousness. Because it is often more difficult to give medications orally, the rectal and subcutaneous routes may be used. There is no absolute rule on pain status in the final days of life: Some patients need the same amount of medications, some less, and some more.

Coma Care
People who are comatose receive basic, non-intrusive care as follows:

• Use artificial tears when the person is unable to blink.
• The room should be lighted during the day and a soft, low light on during the night. Avoid strong light shining in the person's eyes.
• Provide very gentle mouth care. Dentures may no longer fit.
• Give gentle and minimal skin care, primarily to keep the skin clean and dry. Maintain the person's modesty at all times.
• Unless the room is cold, usually a light blanket or sheet is sufficient cover.
• If the patient is incontinent of urine, Attends or heavy towels may be effective enough to avoid catheterization. Catheterization is absolutely necessary only when the person is unable to urinate and uncomfortable as a consequence. Most people will have a marked decrease in urine output; and excessive bowel movements are seldom a problem, although constipation may cause discomfort. Patients with AIDS-related diarrhea are an exception to decreased bowel movements.
• The person's should receive very gentle range of motion exercises, be turned every two hours, and his or her position changed to maintain mobility and comfort. Failure to maintain joint mobility can result in the person becoming painfully stiff in a very short period of time.
• People who are in a coma often can hear and understand what is going around them. Caregivers should continue to talk with the person even when he or she is comatose and unable to answer. Explain what is being done, who is visiting, how you are feeling, and so on. Tell visitors to talk as if the person can hear. Prevent visitors from clustering in a corner and whispering. This is a time for family and a few close friends. Children and infants should be welcomed, albeit briefly.
• A few people develop muscle twitching or jerking.
• The skin often becomes cool and mottled, and loses its turgor. The person may perspire and edema may develop. a bluish tinge to nailbeds, lips, and skin may occur as a result of cardiac and respiratory deficiencies.
• The pulse rate usually increases and is weak and irregular. Blood pressure decreases. But there is no need at this time to take vital signs, orders and usual procedures notwithstanding.
• Some people may "rally" for a few moments or even hours, and be able to say a few words; but many do not.

  Death usually comes simply as cessation of life. The person stops breathing and the heartbeat ceases. The struggle is over.

  After Death Occurs
  Don't rush. There is no reason to rush the body out. In fact, there usually is good reason to not rush through the after-death events. Slowing what happens after death gives family members time to catch their breath and begin to understand what has happened. This is a time to "say good-by" more than once.

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