Used by permission from the Metropolitan Hospice of Greater New York

            The physical and emotional-spiritual-mental signs and symptoms of impending death which follow are offered to help families understand the natural kinds of changes which may happen during the dying process and how to best respond.  All these signs and symptoms will not occur with everyone, nor will they occur in this particular sequence.  Each person is unique and needs to do things in his or her own way.  The body prepares itself for the final days of life in the following ways:

Fluid and Food Decrease

            There is usually little interest in eating and drinking.  Allow the person to eat and drink whatever is appetizing to them, but any nourishment should be taken slowly and in small amounts.  Let the person decide how much and when to eat and drink.  Be careful of decreases in swallowing ability, and do not force fluids if the person coughs soon after.  Reflexes needed to swallow may be sluggish.  Small chips of ice, frozen juices or Popsicles may be refreshing in the mouth.

            The person’s body lets him/her know when it no longer desires or can tolerate food or liquids.  The loss of this desire is a signal that the person is making ready to leave.  This is not a painful process.  Dehydration no longer makes them uncomfortable.  Glycerin swabs may help keep the mouth and lips moist and comfortable.  A cool, moist washcloth on the forehead may also be welcome.

Decreased Socialization

            The person may want to be alone with just one person or with very few people.  Speech is often slow or difficult or the person may not have the ability to speak at all.  It is natural to not feel like socializing when feeling weak and fatigued.  It can be disturbing to the dying person to have more than a few people in the room.

            Think about taking shifts in order to be with the person but also keep the environment quiet and calm and reassure the person that it is okay to sleep.

Sleeping

            The person may spend an increasing amount of time sleeping and become uncommunicative, unresponsive, and difficult to arouse at times.  This normal change is due in part to changes in the metabolism of the body.  Sit with the patient, hold his/her hand gently, speak softly and naturally.  At this point being with is more important than doing for.  Never assume that the person cannot hear; hearing is said to be the last of the five senses to be lost.  Hearing may still remain very acute although the person may seem asleep, so do not say anything in his/her presence you would not say to him/her when awake.

Restlessness

            The person may make restless and repetitive motions such as pulling at sheets or clothing or have visions of people or things that do not exist.  These symptoms may be a result of a decrease in the oxygen circulation to the brain and a change in the body’s metabolism.  Do not be alarmed or interfere, or try to restrain such motions.  Talk calmly and reassuringly with the confused person as not to startle or frighten him/her further.  Lightly massaging the hand/forehead, reading to the person, or playing soft music can also have a calming effect.

Disorientation

            The person may seem confused about time, place, and identity of people around him/her, including close and familiar people.  Identify yourself by name rather than asking the person to guess who you are.  In conscious moments the person may speak or claim to have spoken to people who have already died, or to see places not presently accessible or visible to you.  This is not a hallucination or a reaction to medication.  It signifies a person beginning the normal detachment from this life, preparing for the transition so it will not be frightening.

            Accept this transitional time.  There is no need to contradict, explain away, belittle, or argue about what the person claims to see or hear.  Listen with respect to whatever the person has to say; allow free expression of feelings and offer comfort through touching and/or talking reassuringly and calmly.

Incontinence

            The person may lose control of urine and/or bowels as the muscles in the area begin to relax.  Diapers or chux may be helpful to protect the bed and assist in keeping the person clean and comfortable.

Urine Decrease

            Urine output normally decreases, becomes more concentrated and may become the color of tea.  This is due to decreased fluid intake and to a lessening of the circulation through the kidneys.  The hospice nurse may suggest that a Foley catheter be inserted or irrigated.

Breathing Pattern Change

            The person’s usual breathing patterns may change with the onset of a different breathing pace.  Breathing may become shallow, irregular, fast, or abnormally slow.  A particular pattern consists of breathing irregularly with shallow respiration or periods of no breaths for 5 to 30 seconds, followed by a deep breath.  The person may also have periods of rapid shallow panting type breathing.  Sometimes there is a moaning-like sound on exhale; this is not distress, but rather the sound of air passing over relaxed vocal chords.

            Changed breathing patterns are very common for a person nearing death and indicate decreased circulation in the internal organs and buildup of body waste products.  Elevating the head and/or turning onto the side may increase comfort.

Congestion

            Oral secretions may become more profuse and collect in the back of the throat.  The person may develop gurgling sounds coming from the chest.  These sounds can become loud and distressing to hear.  These normal changes come from fluid imbalance and an inability to cough up normal secretions. It is helpful to raise the head of the bed or use pillows to raise the person’s head so that the secretions pool low and won’t stimulate the gag reflex.  Turn the person’s head to the side and allow gravity to drain the congestion.  You may also gently wipe the mouth with a moist cloth.

Color Changes

            Due to changes in circulation the person’s arms and legs may become cold, hot, or discolored.  This may be especially noticeable in the extremities where the color may change to a darker bluish hue.  This is a normal indication that the circulation is conserving to the core to support the most vital organs.

            Irregular temperatures can be the result of the brain sending unclear messages.  Keep the person warm if they appear cold, but do not use an electric blanket.  If the person continually removes the covers, then allow them just a light sheet.  Sweating may occur and there may be an odor resulting from the many physiological changes taking place in the body.  The heartbeat and pulses may become slower, weaker, and irregular.

Permission to Go

            When someone enters the last days of dying, their body begins the process of shutting down, which will end when all the physical systems cease to function.  This is usually an orderly and non-dramatic series of physical changes that are not medical emergencies and do not require invasive interventions.  These physical changes are a normal, natural way in which the body prepares itself to stop.  This release may include resolving whatever is unfinished of a practical nature, and seeking or receiving permission from family members to “let go.”

            A dying person will commonly try to hold on, even though it brings prolonged discomfort, in order to be assured that those left behind will be all right.  A family’s ability to reassure and release the dying person from this concern is the greatest gift of love they can give at this time.

Saying Goodbye

            When the person is ready to die and the family is able to let go this is the time to say good-bye in personal ways.  It may be helpful to just lay in bed with the person, hold a hand, and/or say everything you need to say.  Tears are a normal and natural part of saying good-bye, and do not need hiding or apology.  Tears express your love and help you to let go.

At the Time of Death

            It may be helpful for family members to discuss ahead of time what to do when the final moment arrives.  At the time of death:  breathing ceases, heartbeat ceases, the person cannot be aroused, the eyelids may be partially open with the eyes in a fixed stare, the mouth may fall open as the jaw relaxes, there is sometimes a release of bowel and bladder contents as the body relaxes.

            The death of someone in a hospice program, although an anxious event for family and friends, is not an acute medical emergency.  While you should call the hospice, it is not necessary to call the medical examiner, the police or 911.  When the death has occurred, take the time needed to call a supportive person or to adjust to the situation.  There is no rush.  Taking care of you is what is more important now.

            The physical and emotional-spiritual-mental signs and symptoms of impending death described above are intended to help families understand what may happen as the terminally ill person’s body completes its natural process of shutting down and the person completes the natural process of dying.  These processes need to happen in a way appropriate and unique to the values, beliefs, and life-style of the individual patient.

We hope this information will alleviate some of the natural anxiety and fear that accompanies caring for a terminally ill person.