Understanding the Dying Process

Watching someone you love decline is overwhelming at best. That feeling is often compounded when you don’t know what’s normal. One of the things I try to do is explain not only what families may see, but why it’s happening. While every person’s journey is unique, there are common physical changes that occur as the body prepares for death.

Not everyone will experience every one of these changes. Some will experience many or all, others maybe just a few. There is no checklist or way to predict exactly when someone will die. But, we can review some of the common, natural changes that occur.

Increased fatigue and sleeping.

One of the earlier changes noticed is increased sleep. As serious illness progresses, the body has less energy available. Everyday activities, even staying awake, require more effort. Increased sleep is simply how the body conserves energy.

Eating and drinking less.

This one is often hard for families to witness. As the body’s system slows down, metabolism changes. Taste buds and preferences may change. The body’s ability to process calories and fluids changes, and with that, its need for them naturally decreases.

This is not the same as starving someone. The body is no longer asking for nutrition in the way it once did, and encouraging someone to eat when they no longer want to can actually cause discomfort like nausea, bloating, or aspiration. The goal shifts from providing nutrition to providing comfort.

As swallowing becomes more difficult, it doesn’t mean we stop caring for the mouth. In fact, good mouth care becomes a priority. Using mouth swabs, applying lip balm, offering small sips if safe can provide comfort. Ice chips, if someone can safely tolerate them, can also be soothing. Families are often relieved to learn that a dry mouth and dehydration are not the same thing.

Changes in Communication

People may gradually become quieter, speak less, or spend more time with their eyes closed. They may not want as many visitors. This isn’t to be taken personally. It just reflects decreased energy and an increasing inward focus.

Some people also spend long periods simply staring into space. They may look past loved ones or stare towards a particular place in the room. Families often wonder if they’re “looking at nothing”. The truth is, we don’t know what they’re experiencing. They may simply have less awareness of the environment around them, or they may be having experiences that are deeply personal. Whatever the reason, these moments are a normal part of many people’s dying process.

You can still be present with them while respecting this part of their journey.

Changes in Circulation

As the heart becomes less efficient, blood flow is redirected towards the body’s most vital organs. Hands and feet may feel cool. Skin may become pale or develop a blotchy, purplish appearance called mottling. These are expected and normal changes as circulation slows.

Changes in Breathing

Breathing patterns often change during the final days of life. Some people develop periods of rapid breathing followed by pausing, known as Cheyne-Stokes respirations. Others may breathe slowly, very rapidly, or with an irregular pattern.

These changes can be alarming to witness, but they are often a reflection of the body’s changing physiology rather than a sign that someone is consciously struggling for air. Families often describe this as “working hard to breathe”. Sometimes they are. Sometimes what we’re seeing is the body naturally changing its breathing pattern rather than the person experiencing distress. One of the most important things we assess in hospice is not simply how breathing looks, but how it feels to the person. It can be difficult to watch because breathing is something we instinctively pay attention to. A breathing pattern that feels frightening to witness isn’t always frightening for the person experiencing it.

Medications such as morphine can reduce the sensation of air hunger and make breathing feel easier. Repositioning, using a fan or cool air, limiting unnecessary exertion, and sometimes oxygen (depending on the cause of the discomfort) can help. If your loved one appears uncomfortable, this is when to reach out to your hospice team.

Secretions and the “Death Rattle”

This is another change that can often be startling. This rattling sound is caused by saliva and normal secretions that collect in the back of the throat because the swallowing reflex naturally becomes less frequent. Although it can sound distressing to those at bedside, it does not necessarily mean the person is choking or suffering. There are ways to help this like repositioning, reducing excess fluids if applicable, and using medications that help decrease secretions. In many cases, the sound is much harder on the people listening than it is on the person who is dying.

Changes in Awareness

As the body and brain change near the end of life, some people begin talking to loved ones who have already died or may see other people, pets, or places that others in the room cannot see. These experiences are common. We don’t fully understand why they occur. Rather than correcting or arguing, I would encourage responding with calm curiosity and reassurance. If your loved one becomes frightened or distressed, let your hospice team know.

Terminal Agitation

Some people experience periods of restlessness or agitation during the final days or hours of life, called terminal agitation or terminal restlessness. They may try to get out of bed repeatedly, pull at clothing or blankets, fidget, appears anxious or confused. There are many possible causes for this including changes in brain chemistry as the body shuts down, pain, medication effects, urinary retention, constipation, difficulty breathing, or other sources of physical, mental, or spiritual discomfort. Not every episode of restlessness is terminal agitation. Sometimes it’s the body’s way of telling us something is uncomfortable, and that’s worth investigating. Because some causes are able to be treated easily, let your hospice team know. Sometimes a simple measure can help. Other times, medications may be helpful to allow the person to rest more peacefully.

Although terminal agitation can be distressing to witness, it is not caused by something you did or didn’t do.

The “Rally”

Sometimes, shortly before death, a person may experience what is called “the rally”. They may seem more alert, ask for a favorite meal, be more interested in visitors or conversations, or maybe even get out of bed after days of sleeping.

Not everyone experiences a rally. When it does happen, it can last anywhere from a few minutes to a day or two. We don’t fully understand it, and because it’s unpredictable, it’s important not to assume that someone is recovering or that death is no longer near.

If your loved one experiences a rally, I encourage you to simply be present and embrace it for whatever it is.

Actively Dying

You may often hear the phrase “actively dying”. This is a term we use to describe the body’s final stage of the dying process, usually in the last hours to days of life. You may also hear “imminent” used for this phase. During this time, many of the changes above become more pronounced. Someone may no longer wake up, eat, drink, or speak. Breathing may become more irregular or labored. Hands and feet may become cooler. Urine output decreases as the kidneys slow down. Individual organ systems are gradually slowing down and no longer able to function as they once did. Actively dying does not tell us exactly when someone will die. Everyone’s timeline is unique. Some people remain in this phase longer than expected, while others move through it more quickly.

Understanding these changes doesn’t take away the sadness or discomfort of saying goodbye, but it can help to reduce fear. It can help families focus less on wondering, “is this normal?” and more on being present with the person they love.

If your loved one is enrolled in hospice and you’re ever unsure about a change or what is expected, call your hospice team (or your death doula!). No question is too small. We would rather answer a hundred small questions than have you worry alone.