Many people have never been present when a person dies. The movies certainly do not give us a realistic picture of what to expect. Of course, much of the process depends on what is causing the person to die. However, there are some generally common elements.
Some family members are tempted to call an ambulance, especially as the breathing becomes labored or irregular. They want to go to the Emergency Room. Of course that is an option if staying at home is too traumatic for the family. However, for the person who is dying, the commotion surrounding a transport to the hospital can be very distressing and uncomfortable. What awaits are machines and protocols and unfamiliar surroundings. Many people die on the way in the ambulance.
Your loved one’s wishes
It’s wise to talk with your relative weeks ahead of time to determine where it is that he or she prefers to die. Most people prefer to stay at home with family present. Make plans about what you will do as death approaches.
Below are some articles that describe what to expect.
Think of the last week or two of life as a process of getting ready to move to a new home. In that analogy, we pack things up and clean one room at a time. When we’re done with a room, we shut the door and don’t usually go back in. It’s the same process with dying.
The body will shut down, one organ system at a time. It lets go of what it doesn’t really need in order to concentrate its waning energy on the most important tasks: continued breathing and blood flow. It is, ultimately, a losing battle with the disease. But the body tries valiantly.
Loss of appetite
The first organ system to “close down” is the digestive system. Digestion is a lot of work! In the last few weeks, there is really no need to process food to build new cells. That energy needs to go elsewhere.
The person you care for will begin to lose interest in food and will eventually stop eating. He or she will also lose the sensation of being thirsty. Bowel movements will stop. What urine is produced will be dark in color. This dehydration in preparation for death may actually help reduce fluids in the lungs. The loss of appetite and thirst is essentially the body shutting down the digestive system and “closing that door.”
Loss of awareness
Conscious awareness is often the next system to close down. It takes a lot of energy to follow conversations, speak, and track what is going on. At some point this will be too much. The person who is dying will become less and less “present.” This withdrawal may take the form of sleeping a lot. Or it may involve delirium or hallucinations, a general disorientation.
Hearing and touch remain
People who are dying do seem to retain their sense of hearing and their sense of touch until very close to the end. Holding hands, gently massaging the feet, or wiping the brow are all things you can do to offer comfort. Even if your loved one seems to be asleep, speak words of love and affection. (Many family members have been surprised, and even embarrassed, to have a dying relative respond to something that was said, even in another room, when they thought the person was asleep and not able to hear!)
Heart and lungs are last
It is the heart and lungs that keep going until the very end. In the last few hours or days, the heartbeat becomes thin and very fast (120 beats a minute or more). Blood pressure is very low.
The lungs begin to fill with fluids. Breathing is accompanied by a wet, crackling sound. Although alarming to hear, it is a normal part of the dying process. It does not appear to reflect pain or discomfort for the patient.
The breathing pattern becomes irregular. People who are dying have periods when their breathing is quick and shallow. This is later followed by inhalations spaced very far apart.
Toward the very end, a person can go as long as 20–60 seconds between breaths. This does not appear to be distressing for the patient. It can be exhausting for those who are present in the room, however, as they hold their breath to see if the person is going to inhale again. Don’t forget to keep breathing, yourself!
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Being with the dying
People in the last few days often drift in and out of consciousness. You and the person who is dying may or may not be able to talk much during this time.
The best way to be with the dying is to follow their lead. If they feel like talking, great. If they are sleepy, bring something you can read. Just sitting and being present in the room with them is very reassuring.
The last few days are precious. This time is limited and sweet. It’s tempting to want to do things. To fix the pillows, brush their hair, bring some food. There is a lot to learn and share together, especially in stillness. Slow down to their pace. Listen with your heart. It will tell you what to do.
Things to say
People at the edge of life have very little energy. As a general rule, you will want to keep conversations short. If there are unresolved conflicts, this is not the time to process through who said what, when.
The dying are often moved to express love and gratitude. And they are certainly able to receive love and gratitude. It can be very healing to simply let the dying person know how much you care. Tell them how much they meant to you and the ways they contributed positively to your life.
Pastimes that work well when someone has very little energy include
- reading out loud
- quietly holding hands
- listening to music together
- reminiscing good times
Some family members feel strongly about being present at the time of death. Very understandable. At the same time, it can be difficult for the dying to “let go” when all of their reasons for staying are present.
Some people seem to almost choose when they go. In fact, hospice nurses often notice that patients “wait” for a time when family members have left in order to die.
Rather than everyone gathering in the room, work it out so just one of you is there at a time. Then your loved one is not completely alone. Bring something to read, or something quiet to do. There may be many hours when the person you care for is sleeping. But if they do drift back and open their eyes, it will be comforting to see someone they love.
It seems to help the person who is dying to be given assurances. They worry about those they are leaving behind. Let your relative know you will miss them but will manage without them. That it’s all right to let go.
How would you like to spend the last days or hours with your loved one? What would you like to say?
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Here is what you are likely to observe about breathing in the last few days:
- The pace of breathing changes
Breathing may swing from very short and fast to very drawn out and irregular. While a healthy individual takes roughly 20 breaths a minute, someone near the very end of life may take only 1–3 breaths a minute.
- Breathing becomes more labored
The act of breathing itself can take a lot of energy. It is common for people at this stage to breathe through the mouth. This can cause the mouth and tongue to dry out.
- Noisy breathing
When a person is within the last day or two of life, fluids collect in the throat and airway that would otherwise get processed out. This creates a gurgling noise sometimes known as the “death rattle.” It can go on for many hours. While this gurgling does not seem to be uncomfortable for the patient, family members sometimes find it distressing
Things you can do to ease breathing
- Elevate the head
Lying flat makes it hard to breathe. If you have a hospital bed and your relative is awake, try elevating the head. Or use pillows. The more upright the better, as it relieves pressure on the chest.
- Position on the side
It’s easiest to breathe when lying on one side or the other. Help your loved one try this position while he or she is sleeping.
- Limit fluid intake
Toward the end of life the body accumulates fluids and can’t process them out. This is why your loved one’s breathing is so noisy. You can help by limiting fluids going in. If your relative asks for fluid, by all means give it! But if not, don’t push fluids. The only consequence of low fluid intake at this point is dry mouth and parched lips.
- Soothe dry mouth and parched lips
Ice chips or sips of water can help. Sucking on a wet washcloth is also very effective. There are little sponges on sticks that you can soak in water. These can help you swab the inside of the mouth. Your relative can also suck water from them. They may be less troublesome and easier to hold in place than a wet washcloth.
- Consider medication or suctioning
There are medicines to help dry out the fluids. There are even suction devices that can be used in the throat. The latter is very intrusive. Standard medical thinking is that these remedies are more to help the family members than they are helpful for the dying.
- Keep air quality high
This means no smoking in the room. And absolutely no smoking if your loved one is on oxygen! Also avoid dusting or vacuuming. You want the room to be filled with the cleanest air that has the fewest particles.
- Provide fresh air if appropriate
The feeling of extra air can ease any breathing anxiety. When your relative is awake, unless he or she is chilled, open a window. Or you can turn on a fan.
- Address breathing anxiety
If the person you care for is awake and seems anxious about not having enough air, talk with the doctor. There may be medications or other approaches to ease that anxiety.
What strategies sound the most promising to you?
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Delirium and restlessness
Most people will show signs of delirium, restlessness, or agitation in the last week or two. This can take many forms. Your relative may pick at his or her clothing or blankets. You may notice twitching, fidgeting, or waving of the arms. Some people reach their arms upward, as if to be lifted. Others call out.
The person you care for may become irritable or paranoid. He or she may seem confused or disoriented, not recognizing the room or familiar people. Hallucinations are common. (This means hearing or seeing things that others do not hear or see.) Many dying people seem to mention, or be speaking to, relatives or friends who have already died.
A normal part of the process
Restlessness, agitation, and delirium are often the result of organ systems shutting down. Distressing as they may be to witness, they are normal to the dying process.
Is there suffering?
If your loved one seems to be disoriented but is not upset, then let it be. If there is an anxious quality, however, be on the lookout for any causes of suffering:
- Pain. Agitation and restlessness are common when people are in pain. For persons with dementia or people who have problems speaking, restlessness is a nonverbal way to express that there is a problem. Look for possible causes of pain. Is there a sharp object somewhere? Bedding twisted around a foot or arm? Is a bed sore developing? An infection? Address these possible sources of pain and see if the restlessness or agitation will go away. Check out our article about managing pain.
- Fever. High temperatures can cause a patient to become delirious. Perhaps there is an infection. More likely the fever is just the body struggling to beat the disease. Use cool cloths on the forehead and body. Ask the health care provider if there are medicines that can help.
- Too many medications. Especially as the body slows down, it takes longer for drugs to process out. If your loved one is on several medications, a buildup of toxins may be causing problems of their own. Now may be a good time to reevaluate which medicines are truly necessary for comfort and which are causing more harm than good.
- Too much of a particular medication. People who have been on pain medicines for a long time may experience delirium and confusion. Or they may experience body jerks. It could be that your loved one would benefit from a lower dose or a different medication.
- Brain tumors. The pressure inside the skull can cause agitation. There may be interventions that can reduce fluid buildup or otherwise reduce the pressure.
Does your loved one appear to be suffering?
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Below are other common changes during the last few days of life.
Weakness, sleep, and fatigue
Your relative will have less and less energy as time goes on. All of it will be concentrated on fighting the illness. Eventually he or she will spend most of the time in bed. A bedside commode will help reduce the need to get up and walk to the bathroom if there is an urge to go.
Your relative will spend more and more time sleeping. Some dying people say they feel like they are visiting the “other side” when they are asleep. Sleeping is a way to conserve needed energy. As your relative gets closer to death, it will be harder and harder to wake up. Other than for pain medications, there is very little need to call them out of sleep. (And even pain medicines can be given through a skin patch. These can be changed whether your loved one is awake or not.)
Discoloration of the skin
As the circulation gets weaker, your relative may develop spots or streaks of blue or purple. His or her fingernails, lips, and toenails may become blue or gray. The feet and hands will become mottled and cold. This is a sign that death is approaching. If the hands and feet are warm to the touch, death will probably not occur for several days yet.
Although the hands and feet might feel cold, the body’s internal thermostat may start to break down. The person you care for may complain of feeling hot and may sweat a lot. Such temperature fluctuations are normal. The goal is to do what you can to make your loved one comfortable. If he or she seems especially restless, try removing some layers of clothing or blankets. It may be that the covers are too warm. Ask the doctor if there are any appropriate medicines if this seems to be a big source of discomfort.
Delicate skin conditions can be remedied with lotions. Also, have the person change position in the bed every two hours. You want to be sure they do not develop a pressure ulcer (bed sore). More details concerning bed sores and personal care are available in our article about caregiving tips.
As the kidneys close down and the heart has more trouble beating effectively, the body will build up fluids. This can result in swelling of the feet, ankles, and legs. Sometimes the hands or face. Diuretics create more problems than they solve. They tax the kidneys and will cause your loved one to need to urinate a lot. This means many trips to the bathroom, the use of bedpans, or accidents in the bed. Even the use of diapers will put your loved one at risk for bed sores because the skin is fragile and it’s difficult to keep the area clean and dry. The simplest solution is to reduce fluids unless your relative asks to have something to drink. Putting lotion on the skin can help where it is stretched tight from the swelling.
As your relative’s fluid balance wavers, his or her mouth can become dry. Olive oil or lip balm can do much to relieve dry, chapped lips. So can swabbing the mouth with sponge “toothettes.” These are small sponges on a stick, like a lollipop. Some people enjoy sucking on ice chips or a wet washcloth to relieve the discomfort of a dry mouth.
The combination of less fluid coming in and the kidneys closing down will result in very dark, very strong-smelling urine.
Depending on the illness, there may be a strong odor. The patient may or may not be able to smell it. It can be distressing to family members. Do what you can to be sure the patient is kept clean. Open windows when possible, and consider putting flowers or other subtle fragrances in the room.
How confident do you feel about handling these end-of-life situations? Are there any that feel especially troubling?
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The moment of death
Unlike the movies, the actual moment of death is often vague and even anticlimactic. There is a tendency for the breathing to become spread out and irregular. Sometimes there is a shudder or a brief sigh at the last breath. But often the last breath is as uneventful as the ones before it. There simply isn’t another breath afterward.
How will you know?
- Lack of breathing
- Lack of pulse (heartbeat)
- Muscles in the jaw relax. The mouth will open slightly.
- The eyes may open and stay that way.
- Sometimes a bit of fluid comes out of the mouth, and for some, the bladder and bowels may release at the time of death. (Because there has been little eating, if this happens, there isn’t usually much volume.)
If you think your loved one has died, check the breathing and heart rate. Actually pronouncing the death can help those present in the room make closure.
What worries or concerns do you have about the moment of death?
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Immediately after a person dies
Many people think they need to call someone official right away. In fact, all you need to do is note the general time of death. There is no reason to rush calling the doctor or the mortician, unless that is your preference. You may find that you and the others present want to spend some quiet, reflective time with the body, as a group or individually.
A tender time
Be gentle with yourselves and move slowly. You will have witnessed a profound event, and you are likely to be quite open and emotionally vulnerable. Give yourselves time to process what you have been through and to say your good-byes.
Bathing and dressing the body
If you are planning to bathe and dress the body yourself, you will probably want to do this within the first hour, before it starts to stiffen. If the eyes are open and you would prefer them to be closed, you will want to close them fairly soon after death. Some people put coins on the lids to keep them down. You may also want to roll up a towel and place it under the chin if you prefer that the mouth remain closed.
Letting close relatives know
Once you make phone calls and get the outside world involved, you begin to limit the time you will have left with your loved one. You may wish to contact close friends and relatives and tell them of the death. If they live nearby, they might also appreciate some time with the body before it is taken away. Rest assured that the morticians can come many hours after the death. The body will not decompose that quickly.
Calling the mortuary
Once you call the mortuary, they will send out two staff members. They will ask a few questions and then spend some time preparing your loved one’s body for transport. They are usually sensitive to the situation and understand that this is a very difficult time. When working with the body, they will wear gloves and masks. This is no reflection on your loved one. It’s simply standard health procedures. They will bring in a gurney with a big leather bag and will eventually put your loved one’s body into the bag. They will wheel it out on the gurney to their vehicle and take it to the mortuary.
Say your good-byes first
It is advisable to have said your good-byes before they move the body, rather than at the door. Many family members find it traumatic to witness their loved one leaving on the gurney.
Many different feelings arise
After your loved one’s body has been taken away, you may feel a bit numb or empty. It is not uncommon to feel distant or removed from the situation. Sometimes it helps to talk with others, but you may feel more like spending some quiet reflective time alone. Many people have a mixture of feelings, including grief, anger, relief, and guilt. All of them are quite normal.
Often people feel pressure to get on the phone immediately and start letting friends and non-family members know about the passing. If you don’t feel up to this task, it’s fine to let it wait. Or to ask someone else who is a little less overcome by the death to make the calls. While it may not seem like it at the moment, there is actually plenty of time to get done what needs to get done. Honor your impulses. Allow yourself to process your loved one’s passing in the way that feels most comfortable to you.
Who might you ask to come over and help when your loved one passes?
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