Progression of changes

When a person is nearing death, there are a series of signs that signal when the body is in the process of shutting down. These signals are presented in the following sections, in the order in which they tend to appear.

Please note that when death is expected within hours or days, the focus of care is usually geared toward maintaining the person’s comfort rather than pursuing tests and treatments. Also at this time, families may want to consider whether there are important cultural, spiritual or religious rituals that need to take place just prior to death or at the time of death. If so, it is helpful to inform those who will be participating and link with the health care team as required.

Declining physical capabilities

In the final few weeks of life in progressive serious illness, there is usually a notable decrease in energy and day-to-day functioning. A very significant change is when the person is no longer strong enough to be out of bed. When this is caused by overall weakness from the total disease burden rather than from a specific, possibly fixable problem, it may signal that there are only days to a few weeks to live.

The illness may appear to "speed up", as weakness quickly leads to even further weakness. This decline is often most striking in the last few days of life, when people can change from being fairly independent to sleeping all of the time.

In order to understand why things seems to change so quickly near the end, think of the energy that gets us through the day as being similar to money in the bank. When we are physically well, we can build up our energy savings by eating well, keeping fit, and making other important health and lifestyle choices. When a progressive serious illness occurs, it interferes with the body’s ability to add to the reserves of energy. This is not unlike losing the ability to earn income to add to bank savings.

In such circumstances, we must use existing savings to get through each day. When the body’s energy reserves (savings) are nearly gone, there are dramatic changes in how a person appears. People spend more time sleeping, and less time in activities. When the energy runs out, there seems to be a sudden, big change. The person has no energy to be awake, to communicate, or to take in food or fluids. This change usually signals the final hours or perhaps days of life.

Dramatic changes in physical health

A person’s condition can change quite significantly from one day to the next, or even during the same day. They can seem to go from looking good to looking as though they have only hours to live. This can be perplexing and exhausting for family and friends, who do not know what to prepare themselves for. To understand why these dramatic changes can occur, consider again one of the benefits of having a reserve of something (such as money, or physical strength and energy): it gives something to draw on when there are problems. Without a reserve, things can go from seeming pretty good to seeming very bad quite suddenly, since there is nothing to draw on to buffer or neutralize the drain of energy.

Difficulty recovering from treatment

Treatments such as surgery, chemotherapy, and radiation therapy can be thought of as making “withdrawals” from the energy reserves of a person. In advanced illness, the body cannot add back to those reserves, and the health care team cannot reliably tell how much “energy savings” someone has left. There is a risk that the treatment would make a withdrawal that exceeds the reserves, in which case the person would become steadily weaker and would not recover from the treatment.
 

Sudden improvements

Patients whose health seems to be deteriorating can also surprise family and friends with their ability to suddenly improve. This improvement may be an indication that a new problem has resolved itself. For example, a person with a life-threatening illness may have developed a minor viral infection such as a cold or a mild flu. Alternatively, they may have been experiencing a "down day," just as we all do at times, where for no obvious reason there seems to be no energy. For someone who is frail, however, the “down days” can result in a worrisome drop in function, sometimes to be followed by a surprising improvement the next day, when for some reason their energy fluctuates back up. People who are in healthy physical condition have the reserve to draw on to buffer these fluctuations, so the changes do not look so striking.

Declining alertness and interaction

Family and friends will usually notice the person being less alert, and more withdrawn from social interaction. This is due to physical reasons such as limited energy, and may include emotional or spiritual factors as well. If the reasons for social withdrawal seem to be emotional or spiritual, family and friends may want to explore options for support, such as asking a member of the person’s faith community to visit. In the final hours or days, people might also be "quietly confused."
 

Conversations – Can they hear me?

It is not realistic to expect those who are near death to be able to participate in conversation. Family members may wish for a final, meaningful connection and regret not having that opportunity. However, even if the dying person is not conscious, family or friends who would like to say something should be encouraged to speak to the person, perhaps asking others to leave the room in order to allow some private time.

There is no way to know how much can be heard and processed by the brain when death is near, but we do know that hearing is quite a strong function. For example:

• When people are given an anesthetic for operations, as they drift into unconsciousness often the last thing they are aware of is the clatter and noise in the operating room.
   
• It is very unusual for people to lose their hearing from conditions that affect just the brain, such as a stroke. The sense of hearing is well supported in different parts of the brain, making it quite resistant to such problems.
   
• We sometimes hear of people who have come out of a coma due to a temporary problem such as a head injury, who seem able to recall some things that were said while they were thought to be comatose.

Speaking to a dying person can be very meaningful, regardless of whether the dying person seems alert enough to respond. A final goodbye might be all that is wanted, and this should be encouraged.

Sometimes it seems as though the dying person needs permission to "let go"... to hear from loved ones that they will be able to carry on, and that it is okay to leave them.

If we assume that hearing or some level of awareness might remain intact in the unconscious dying person, then we should also be sensitive about what topics we discuss at the bedside. It may be best to speak outside of the room when discussing topics that might have upset the person when awake, such as frank discussions about how soon death is likely to come. Disagreements among family members may be better dealt with away from the unconscious person’s bedside as well.
 

What should I do at the bedside?

Friends and family may feel they need to do or say something while at the bedside. However, the presence of loved ones near the end is usually more important than what is done or said. Families often just go on visiting, reading, laughing and joking, telling stories, watching television…in other words, being a family. This is quite likely what would most please the person who is dying – knowing that family members are there and supporting each other.

The health care team can also help those at the bedside take part in making sure the person is as comfortable as possible, by providing some aspects of comfort care, such as moistening a dry mouth.
See also: Providing Care
 

Reflexes

When spending time at the bedside, family and friends might notice the development of a couple of specific reflexes in the patient, which might be upsetting for them if they do not understand what is going on. People who are experiencing weakness in how the brain is functioning – such as those near death from illness, or those who have had a stroke or other disease affecting the brain – may develop what are called "primitive reflexes." These are also seen in newborn infants. Specifically, families may notice these reflexes.
 

• Grasp reflex
  When something is placed in the hand of the patient, there is a reflex to grasp the object, particularly when it is pulled away slowly. This can be upsetting for visiting family and friends who have been holding the hand of their unconscious loved one, and find that as they try to leave, the grip becomes stronger. It seems as if the patient is giving the message “Don’t leave me!” However it is in reality a reflex action that happens without a conscious effort by the person. It can be very difficult to leave the bedside if you feel that the person is trying to hold you there.
  
   
• Sucking reflex
  When objects are placed in the mouth, there is a reflex to clamp the mouth shut, especially when attempts are made to withdraw the object. When this is noticed during mouth care with moist sponges or cloths, it can seem as if the patient is extremely thirsty, since there is such an effort to keep the object in the mouth. Caregivers might feel guilty at not being able to do more for managing thirst, however it is not thirst or hunger that drives this clamping of the mouth shut, but a reflex action.
  
   
• Rooting reflex
  Where the person tries to move the mouth towards objects that are touching the face near the mouth. Again, this can make it seem as though the person is very thirsty or hungry, however it is simply a reflex that happens when the brain is not functioning well, or when it is early in development such as in newborns.
   

The dilemma of visits from casual acquaintances: “paying respects”

Social connectedness is very meaningful for most of us, and people will often want to visit someone who is ill as an expression of that connection. Such visits can be important to someone who is dying, affirming the impact that they have had on the lives of others.

However, casual visits from acquaintances should be brief, with visitors asked to respect limits on visiting time. In some cases, the family may decide there should be no casual visits at all. Neither people who are dying nor their families should feel a social obligation to entertain or to meet people. Visitors can be politely thanked for their kindness and concern, but told that it is not a good time to visit. If the setting is a health care facility, then the health care staff can take on the role of limiting visits, so that family members do not have to feel awkward about setting such limits.

Decreased food and fluids

As death nears, there is little or no appetite for food and fluids.

The body cannot use nutrients in food, so family and friends should not be concerned if the person does not eat or drink much. In the final hours or days, people are not usually awake enough to swallow safely. Forcing someone to eat in these situations can make them nauseated, and can result in food going down the windpipe.

The natural cycle of physical decline in the final days is one of weakness and sleepiness, which results in less fluid being taken in, which causes more weakness and sleepiness. At a certain point, the lack of fluids will lead to dehydration. People who are dehydrated have experienced excessive water loss from their bodies, meaning that different systems cannot function properly – especially the renal system, involving the kidneys.

Dehydration is a normal part of the dying process and is not the same as thirst. In people who are dying, thirst is usually more related to a sensation of dry mouth, which can be addressed by giving mouth care with a moist sponge or cloth, or commercially available moisturizing sprays.

Family and friends can be reassured that people nearing death rarely experience hunger, and that the lack of food intake at this time does not affect strength or shorten life. Decreased fluid intake is also a natural part of the dying process.
See also: Providing Care

Difficulty taking medications

Trouble swallowing medications is an expected development in someone who is nearing death. Health care providers should prepare for this by identifying other ways of giving medications. These may include placing medicine under the tongue; delivering medication under the skin through injections (subcutaneous); through the skin through topical patches; or, rectal suppositories.
 

If care is being provided at home, these alternative methods must be available before swallowing becomes a problem. Planning in advance avoids having to look for such medications when pharmacies may not be open. This also ensures there is no disruption in the administration of medications that the person needs to remain comfortable.
 

Discussion with the health care team should also include a review of medications. Non-essential medications may be stopped when someone is no longer able to swallow. Medications to manage symptoms (such as pain, nausea, or confusion) should be continued.
See also: Help with Medications

Confusion, agitation, “visions”

As death nears, the brain experiences the same burdens as the other systems of the body. With weakening of organs such as the kidneys, the liver, and the lungs, there is also a decrease in alertness and there is often some degree of confusion (called a “delirium”).

People who are confused often also feel frightened and threatened by people and things around them. This is called being “paranoid.” In a way, this might be considered a practical method of self-protection. If someone is finding it difficult to sort out the world around them, it is safest to consider everything a threat. It is not usually productive to try to contradict the statements of a paranoid, confused person. Disagreements may simply feed the feeling of being threatened. It is generally best to acknowledge the distress that they must be feeling, and to commit to try to sort things out.

Confusion is very disruptive to care, and causes significant issues:

• It is very upsetting for family at the bedside, who may be seeing and hearing things done by their loved one that are hurtful to others and very out of character. Children or grandchildren may be afraid to be present, and family may feel that they have lost the person already, since the change in personality is so significant.
   
• There may be concern about possible self-harm or harm to others if restlessness and agitation are quite bad.
   
• The health care team will have difficulties administering medications, and providing care such as bathing and repositioning.
   
• There is a risk that people will stop seeing the patient as a person worthy of respect, especially if they think the patient’s behaviour is embarrassing or undignified.
   

Most patients would feel upset if they were aware of their behaviour. One approach to guiding care decisions for someone who is confused is to imagine that they could look in on themselves from the perspective of when they were well – how would they feel knowing their current circumstances? If they had a choice, most people would feel that such confusion and paranoid behaviour causes an unacceptable loss of dignity, and would prefer to be sedated.
 

What happens when people are confused?

Sometimes confused people will misinterpret things, such as thinking that a coat rack is a person, or a piece of clothing on the floor is a cat or dog. This is called an illusion. Other times, people will experience hallucinations, which is seeing, hearing, or feeling things when there is nothing there at all.

To the person experiencing them, these illusions and hallucinations can be frightening, comforting, or neither (they are just “there”). Sometimes people will see visions of relatives who have either died, or who are living but not actually present at that time. Do these experiences represent something spiritual or metaphysical, or are they simply the result of the brain being under a significant burden of illness? Obviously such a question cannot be definitively answered, however the following approach to such events could be helpful.

• If the experience is comforting for the person, then there is little to be served in either trying to treat it with medications or debate its true nature. Simply acknowledge how the experience must be comforting for the individual.
   
• If the experience is frightening and threatening for the person, it is important to provide support as much as possible. Consider medications to treat the illusions or hallucinations, and if possible look for treatable causes.
   

See also: Confusion
 

Use of sedation when death is near

If death is near (death is expected within hours to one or two days) and the dying person is upset and confused, there is no time to sort out possible causes of the confusion and try different treatments. The approach that can most effectively calm the situation is to administer medications, which result in sedation, so that the person is sleeping.

Once someone is sedated in these situations, it is very likely they will remain sleeping until death. Decreasing the amount of sedative in order to bring the person back to a state of consciousness is not a realistic option. Because death is so close, and the problems that caused the confusion are actually going to be worsening with time, if the sedation is lightened then the distress will almost certainly return. The goal of care at this point is for the sedation to remain effective and the person to remain sleeping until the illness runs its natural course, with death occurring from the underlying progressive terminal illness.

Family members trying to decide whether sedation is appropriate may wonder whether the medication will bring about an earlier death. Families, friends, and the health care team should understand that when the underlying illness is expected to result in death within a few days to a week, or perhaps even one to two weeks, sedation with appropriate doses of medications does not influence the time of death. The goal of sedation is to use doses that maintain sleep but are not strong enough to hasten the natural dying process.

Final physical changes

Circulation

The circulation of the body gradually shuts down, which causes the hands and feet to feel cool, and a patchy purplish colour appears on the skin, called “mottling.” The heart tends to beat more quickly, but not as strongly. This makes the pulse rapid and hard to feel at times.

Bowel and bladder function

As people get closer to dying, there will be less food or drink taken in and less production of stool, so bowel movements will be decreased. Managing constipation is not usually considered necessary in the final week or so of life. Loss of control of bowel movements can be managed with adult absorbent or incontinence products, waterproof pads and cleansing of the rectal area by care providers.

Urine production also decreases as the person takes in less fluid. In the last one or two days of life, there may be no urine output at all. Loss of control of urine is sometimes best managed with a catheter that is inserted into the urinary bladder and connected to a drainage bag. The presence of a catheter will help to avoid skin breakdown that might occur from wetness.

Breathing changes

Changes in breathing are generally the most significant physical changes that give clues to how close someone is to dying. We generally see changes in:

• how fast the breathing is – called the rate;
   
• how deep the breaths are (may be shallow, deep, or normal);
   
• how regular the breathing is – called the pattern;
   
• the kinds of muscles used in breathing;
   
• the amount of mucous or secretions that can build up due to inability to cough, and perhaps the development of an infection.
   

While there is no specific sequence of changes seen, these are changes that commonly occur.

• Muscles used in  breathing
  The muscles that are used in breathing may change so that muscles at the front of the neck are used. The shoulders may also lift up when the person is breathing in. This might make it seem as though the person is struggling. However if there is no sign of agitation or discomfort otherwise, it is simply different muscles being used as the regulation of breathing is taken over by the automatic centres in the brain (sort of an “automatic pilot”).
  
   
• Breathing patterns
  The breathing tends to take on a very regular, almost mechanical pattern, which is also an indication that the automatic centres in the brain have taken over control of breathing. It is often of normal depth at first. It then may become quite shallow, and more rapid. There may be increasingly long pauses in breathing (apnea).
  
   
• Pauses in breathing
  When the pauses in breathing appear, a noticeable pattern often develops. There are clusters of fairly rapid breathing that start with shallow breaths that become deeper and deeper, and then fade off, becoming shallower and shallower. There may be 5-10 breaths in each cluster, and each cluster is separated by a pause that may last a few seconds or perhaps up to 30 seconds. This is called the “Cheyne-Stokes” pattern of breathing, and is occasionally seen in healthy elderly people as well, especially during sleep. Changes in the pattern of breathing generally suggest that the important centres of the brain which regulate the automatic breathing function are weakening, and may indicate that death may be soon.
  
   
• Noisy breathing
  There may be a build up of secretions in the lungs, which can be noisy (rattling or gurgling) and sometimes upsetting for people at the bedside. It is likely not distressing to the dying person because they are not conscious -- just as a person who is deeply sleeping is not aware that they are snoring. However, medications can be given by injections under the skin, and sometimes by a patch or a gel on the skin, which will help dry the secretions if there is a possibility of discomfort. Treating the secretions also makes it easier for people to comfortably visit.
  
   
• Irregular breathing
  In the final minutes or perhaps hours of life, breathing takes on an irregular pattern in which there is a breath, then a pause, then another breath or two, then another pause, etc. There may be periods of 15-30 seconds or so between final breaths.
  
   
• Reflexive movements
  There may be very slight motions of breathing happening irregularly for a few minutes after the final breath. These are reflex actions and are not signs of distress.
   

An unexpected rally

Sometimes when patients are near death, they may experience an improvement in their alertness and interaction which defies explanation. Although temporary, this may give family an opportunity to share thoughts or important feelings with the patient, sometimes resulting in very meaningful connections in the final days.

Such unexpected and puzzling fluctuations in alertness can be exhausting for family members, who have been preparing themselves for losing their loved one. There may also be some questioning of the credibility of the health care team, who have been ensuring that family know that death may be soon. Usually a specific cause for these changes cannot be determined, and supporting the family in enjoying this time together is the most helpful approach. 

How do I know when death has occurred?

Usually the most obvious sign that death has occurred is that the breathing has stopped, and there are not even any slight breathing motions. The muscles of the face will have relaxed, and there will be no movement anywhere. Sometimes shortly after death there are minor muscle twitches, however these go away in a few minutes.

The pulse in the neck that can sometimes be seen in people will have stopped, and a pulse cannot be felt at the wrist or elsewhere. There will be no heartbeat.

Sometimes the eyelids do not close all of the way, but stay half-closed. This is often the natural resting position. The pupils (the black circle of the eyeball) are quite large and do not change in size in response to light.

Even after someone has died, family and friends may wish to stay by the bedside and say whatever words seem appropriate. There is no harm in touching the person’s body and there should be no rush to move the person until everyone has had a chance to say their final good-byes.
See also: The Moments after a Death

Content reviewed August 2011