Although it is impossible to totally prepare for a death, a death may be made easier if you know what to expect. This pamphlet may be helpful in preparing you as family and/or caregiver to understand the final stage of life. It is important to discuss your concerns and fears with those around you, both your family and health care providers. These people can help you make choices with or for your loved one and can inform you about other services that are available to support you.
Death is a natural process as the body begins shutting down. The following physical and emotional signs of approaching death are described to help you understand what can happen. Not all these signs and symptoms will occur with every person nor will they occur in any particular sequence.
This section is intended only as a guide. It is not intended to replace advice given by a health care professional such as a nurse, physician, clergy member, social worker, CCAC case manager and/or pharmacist.
SIGNS AND SYMPTOMS OF APPROACHING DEATH
When confronted with approaching death, many of us wonder when exactly will death occur. Many of us ask the question, “How much time is left?” This can often be a difficult question to answer. The dying do not always cooperate with the predictions of the doctors, nurses or others who tell family members or patients how much time is left.
Hospice staff have frequently observed that even the predictions by physicians about the length of time from the original diagnosis till death is often inaccurate. Many families report that “the doctor told us he [the patient] only had so much time left, and he’s lived much longer than that.” … or a similar story. Statistical averages do not tell us exactly how long a particular patient has to live; they can only serve as a general guideline or point of reference.
Although statistical averages do not help much in an individual case, there are specific signs of approaching death which may be observed, and which do indicate that death is approaching nearer. Each individual patient is different. Not all individuals will show all of these signs, nor are all of the signs of approaching death always present in every case.
Depending on the type of terminal illness and the metabolic condition of the patient, different signs and symptoms arise. An experienced physician or hospice nurse can often explain these signs and symptoms to you. If you have questions about changes in your loved one’s condition, ask your hospice nurse for an explanation, that is one of the reasons she is serving you.
There are two phases which arise prior to the actual time of death: the “pre-active phase of dying,” and the “active phase of dying.” On average, the preactive phase of dying may last approximately two weeks, while on average, the active phase of dying lasts about three days.
We say “on average” because there are often exceptions to the rule. Some patients have exhibited signs of the preactive phase of dying for a month or longer, while some patients exhibit signs of the active phase of dying for two weeks. Many hospice staff have been fooled into thinking that death was about to occur, when the patient had unusually low blood pressure or longer periods of pausing in the breathing rhythym. However, some patients with these symptoms can suddenly recover and live a week, a month or even longer. Low blood pressure alone or long periods of pausing in the breathing (apnea) are not reliable indicators of imminent death in all cases. God alone knows for sure when death will occur.
Signs of the preactive phase of dying:
- increased restlessness, confusion, agitation, inability to stay content in one position and insisting on changing positions frequently (exhausting family and caregivers)
- withdrawal from active participation in social activities
- increased periods of sleep, lethargy
- decreased intake of food and liquids
- beginning to show periods of pausing in the breathing (apnea) whether awake or sleeping
- patient reports seeing persons who had already died
- patient states that he or she is dying
- patient requests family visit to settle “unfinished business” and tie up “loose ends”
- inability to heal or recover from wounds or infections
- increased swelling (edema) of either the extremities or the entire body
Signs of the Active Phase of Dying
- inability to arouse patient at all (coma) or, ability to only arouse patient with great effort but patient quickly returns to severely unresponsive state (semi-coma)
- severe agitation in patient, hallucinations, acting “crazy” and not in patient’s normal manner or personality
- much longer periods of pausing in the breathing (apnea)
- dramatic changes in the breathing pattern including apnea, but also including very rapid breathing or cyclic changes in the patterns of breathing (such as slow progressing to very fast and then slow again, or shallow progressing to very deep breathing while also changing rate of breathing to very fast and then slow)
- other very abnormal breathing patterns
- severely increased respiratory congestion or fluid buildup in lungs
- inability to swallow any fluids at all (not taking any food by mouth voluntarily as well)
- patient states that he or she is going to die
- patient breathing through wide open mouth continuously and no longer can speak even if awake
- urinary or bowel incontinence in a patient who was not incontinent before
- marked decrease in urine output and darkening color of urine or very abnormal colors (such as red or brown)
- blood pressure dropping dramatically from patient’s normal blood pressure range (more than a 20 or 30 point drop)
- systolic blood pressure below 70, diastolic blood pressure below 50
- patient’s extremities (such as hands, arms, feet and legs) feel very cold to touch
- patient complains that his or her legs/feet are numb and cannot be felt at all
- cyanosis, or a bluish or purple coloring to the patients arms and legs, especially the feet and hands)
- patient’s body is held in rigid unchanging position
- jaw drop; the patient’s jaw is no longer held straight and may drop to the side their head is lying towards
Although all patients do not show all of these signs, many of these signs will be seen in some patients. The reason for the tradition of “keeping a vigil” when someone is dying is that we really don’t know exactly when death will occur until it is obviously happening. If you wish to “be there” with your loved one when death occurs, keeping a vigil at the bedside is part of the process.
Always remember that your loved one can often hear you even up till the very end, even though he or she cannot respond by speaking. Your loving presence at the bedside can be a great expression of your love for your loved one and help him to feel calmer and more at peace at the time of death.
If you have questions about any of the changing signs or symptoms appearing in your loved one, ask your hospice nurse to explain them to you.
PHYSICAL SIGNS OF APPROACHING DEATH
REDUCED FOOD & FLUID INTAKE: Loss of appetite and decrease in thirst are common. The body is beginning to shut down and does not need nourishment. People commonly feel it is necessary to encourage the person to eat in the hope of sustaining life; however, food and fluid may cause discomfort. The person may ask for ice chips, popsicles, ice cream or some other food choice. Do not be surprised if only a mouthful or two is taken. When swallowing is no longer possible, mouth care provides moisture and comfort. Do not offer a fluid if swallowing is not possible.
ELIMINATION: Output of urine and stool will decrease as the food and fluid intake decreases. Urine and stool may also change color, be passed less frequently and in smaller amounts. Other factors such as immobility and medication may contribute to this.
Your loved one may lose control of bladder or bowel function as the muscles begin to relax. In this instance it may be necessary to use an incontinence brief.
Ask the health care professional about the management of these symptoms. It is important to provide skin care and cleansing on a routine basis.
SLEEPING: Sleeping an increased amount of time is common. It may become more difficult to waken the person. As death nears, the person may slip into a coma and become unresponsive.
RESTLESSNESS AND DISORIENTATION: Confusion as to time, place and recognition of people, even family members and close friends is common.
At times your loved one may become restless. For example, he/she may reach out to unseen objects, pull at bedclothes or try to get out of bed. This can occur for many reasons such as lack of oxygen circulation to the brain or changes in condition or medications. It would be helpful to discuss these changes with a health care professional.
CHANGES IN BREATHING: Regular breathing patterns may change. Breathing may stop for 10 to 30 second periods or there may be periods of rapid, shallow panting. These breathing patterns are normal and indicate the natural progression towards death.
A moaning sound occurs as the breath passes over the relaxed vocal cords.
CONGESTION: Gurgling sounds, often loud, occur when a person is unable to cough up normal secretions. This does not normally cause pain or discomfort. It may be helpful to turn the person to one side and gently wipe away secretions with a moist cloth. As secretions build up, keeping the head of the bed elevated (by using pillows) will make breathing easier. Sometimes medications can be ordered to help dry up secretions.
Oral suctioning may be done, however, this usually causes an increase in secretion production.
SKIN: You may notice the skin begin to change color and become cooler to touch.
The face may be pale and the feet and legs a purple-blue mottled color. The circulation of the blood is slowing down.
Although your loved one is cool to touch, he/she is usually comfortable. Offer a warm blanket but avoid using an electric blanket to prevent the risk of skin burns.
SOCIAL AND EMOTIONAL SIGNS OF APPROACHING DEATH
- Regression and dependency as the person is no longer able to function as autonomously as before
- Grief with experience of multitude of losses
- Activities
- Roles
- Abilities
- Long-term goals and aspirations
- Relationships
- Personality
- Basic sense of identity and self
- Other emotions
- Fear
- Depression
- Anger
- Guilt and shame
- Hope
- It is surprising to some that a person who is dying can be hopeful
- However, hope does not have to be directed toward the distant future
- Hope can be for…
- Accomplishment of short term goals
- Relief from pain and suffering
- Self efficacy in immediate tasks and activities
- Satisfaction in relationships
- Strong and positive self-esteem
- Biochemical changes in emotions, cognitions, and behavior due to progression of illness and medications
- Withdrawal of others limiting social relationships
- Withdrawal from the world outside the self and increasing awareness of inner life
