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What are the signs of active dying?

June 10, 2022, Caregiving, Hospice

What are the signs of active dying?

As people move toward the final stage of life, their bodies begin the natural process of shutting down, sometimes referred to as active dying. The individual will undergo a series of normal physical changes signifying that death is approaching. Gilchrist‘s team will assist caregivers in preparing for these changes, and will aid in providing comfort and support to patients as the end of life approaches. Not every person will experience all of the symptoms described, nor will the symptoms occur in a particular order.

Withdrawal and decreased socialization

As a person begins the process of letting go, they may have little interest in current events or family news, may exhibit decreased interest in visitors, and may wish to see only a few specific people. It is not unusual for a person to withdraw from those they love. They may desire time alone. It is important to honor their wishes and to keep in mind that this is a normal part of the process of separating and letting go.

Fluid and food decrease

A person may want little or no food or fluid and usually does not suffer from hunger or thirst. This decrease in intake is a natural process and means the body is conserving the energy which would be expended in processing food and fluid. Forcing food or drink or attempting to coax patients into eating or drinking may increase anxiety or cause discomfort. Small chips of ice, sorbet or frozen juice may be refreshing in the mouth. Toothettes—tiny sponges attached to sticks that are sometimes referred
to as “lollipops”—may help keep the mouth and lips moist and comfortable. A cool, moist washcloth on the forehead may also be soothing.

Sleeping

As death approaches, a person may spend more and more time sleeping and may appear to be uncommunicative or unresponsive. At times, they may be difficult to arouse. This is a normal change and is due, in part, to increasing fatigue and weakness related to the illness. Increased sleeping may also be related to changes in the metabolism. Sitting quietly with your loved one and holding their hands may be comforting. Shaking, speaking loudly or talking about them as if they cannot hear you is not helpful. Speak directly to the person as you normally would. Even though there may be no response, always assume you are heard.

Vision-like experiences

A person may speak to or claim to have seen or spoken to people who have already died. They may refer to places not presently accessible or visible to family and may make reference to “going home.” This does not indicate a hallucination or drug reaction, and the individual is probably not referring to any earthly home. Detachment from the physical world is beginning. Affirmation of the experience and reassurance that these experiences are normal is helpful. Contradicting, explaining away or arguing about what the person claims to see or hear is not helpful. Most vision-like experiences bring comfort. The Gilchrist team can assist if distress or fear is noted.

Urine decrease

Urine output normally decreases and can become very dark in color due to the decrease in circulation through the kidneys. Consult your Gilchrist nurse to determine whether there may be a need to insert or irrigate a catheter.

Incontinence

A loss of urine or bowel control may occur as muscles controlling those bodily functions begin to relax or weaken. Calm reassurance that this is normal can be very comforting. Discuss with your Gilchrist nurse how to keep the individual clean and comfortable, and what can be done to protect the bed.

Congestion

This symptom may be more distressing to family members than to patients. The sound of the congestion does not indicate that they are in pain or that they are short of breath. There may be rattling sounds coming from the chest, and these sounds may become very loud. This change is due to the inability to cough up or swallow normal secretions. Suctioning usually only increases the secretions and causes sharp discomfort. Wiping the mouth with a cool, moist cloth may bring comfort. Your Gilchrist nurse may also recommend medication to decrease the secretions.

Coolness and change in skin color

As death approaches, hands, arms, feet and legs may be increasingly cool to the touch. The underside of the body may become dark blue. This is referred to as mottling. This is a normal indication that the circulation of blood to the extremities is decreasing. Although the skin may feel cool to the touch, patients may not feel chilled and may be quite comfortable. If the patient complains of coldness, offering a blanket may increase physical comfort. For safety reasons, do not use an electric blanket or heating pad.

Breathing pattern changes

Irregular breathing, panting and periods of not breathing may occur. Changes in breathing are very common and indicate a decrease in circulation to the internal organs. While these changes are not usually bothersome to the patient, they can be distressing to family members. Elevating the head may provide relief. It may also be helpful to hold the patient’s hand and speak in a soft and soothing voice.

Disorientation

Patients may seem confused about the time, place and identity of people around them. Identify yourself by name before you speak rather than asking the patient to guess who you are. Speak softly and clearly.

Restlessness

It is common for patients to make restless or repetitive motions. The apparent restlessness is due, in part, to the decrease in oxygen circulation to the brain and to metabolism changes. It is not helpful to restrain such motions. Patients may be calmed if spoken to in a quiet, natural way. Lightly massaging the person’s forehead, reading aloud, or playing soft music may be soothing. Medication may also be prescribed to relieve restlessness.

Gilchrist is there to support you

It is important to remember that these signs are a normal part of the dying process. They are not medical emergencies and do not require invasive interventions. Your Gilchrist nurse and other members of the team are there to support you as your loved one undergoes these changes. Your nurse can answer any questions and make sure your loved one is comfortable, while your social worker and chaplain can provide emotional support.

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