Signs, symptoms, and what to expect
Like life, death is unique. However, a team experienced in end-of-life care who knows and understands your child, their health status, and your family can help prepare you for the end of a life.
Like life, death is unique. No website or book could hope to capture the unique elements of your child's death. Nothing replaces open, clear, and honest communication with your health care team. Even then, “I don’t know” is a common answer to many questions. However, a team experienced in end-of-life care who knows and understands your child, their health status, and your family can help prepare you for the end of a life.
Death occurs when the body shuts down and its normal regulatory processes stop. Many things can cause the body to begin to shut down. However, the signs that a body demonstrates and the symptoms it might experience while it is shutting down are somewhat common. Depending on the process leading to the end of a child’s life, this last stage may last anywhere from minutes to weeks. Click on the topics below to learn more about some of the common experiences that are expected.
As the body begins to slow, so does the mind. As a child approaches the end of life, they may be awake for fewer and fewer hours during the day. Some children will experience confusion or memory loss during their awake times. This change can be related to many factors including the underlying condition, oxygen/carbon dioxide levels, availability of nutrients, fluids and electrolyte levels, and medications.
It is important to recognize that regardless of the immediate cause, changes in mental status/consciousness are a result of the underlying problem that is leading to death. These changes are not the cause of death. To put it another way, a person does not die because they are sleepy/lost consciousness. They are sleepy/lost consciousness because they are dying. And so, as much as you would like your child to stay with you longer, trying to keep the child awake does not prolong life and may disturb the brain, which is now trying to rest.
Breathing can be the most obvious external sign that a body is alive. Heartbeats and brain processes are equally important signs of life, but in a sleeping person, they can’t be seen by others in the room. Breathing, on the other hand, can be seen, and often heard, even at a distance. Changes in breathing are one of the most common signs that a body is in the process of dying.
Changes to the sound of breathing
As the end of life approaches, the child may make unusual noises when they breathe. These noises may include a snoring sound, wet or rattling noises, or gasping. Some children may have changes in breathing earlier in their disease course for a number of reasons, but the changes at the end of life usually come because of changes in consciousness. If these noises upset you, try playing music, have the television on low in the background, or play white noise.
Remember that (in most cases) the child has changes in the sound of their breathing because they are dying; they are not dying because they have changes in their breathing. As a result, “fixing” these noises does not help a child live longer. Some families wonder if the noises (or the cause of the noises) bother the dying child. Generally, the noises happen because the child’s body has become less sensitive to small changes in their airway; and because their body is less sensitive, the child is less bothered by these changes. Like a person who snores loudly at night, the snoring noise doesn’t usually bother the snorer, but it bothers everyone else. Experts generally don’t recommend treating these noises to comfort the dying person. But sometimes, treating the noises will help the people caring for the dying child to feel more comfortable. Talk to your healthcare team about trying things like, changes in your child’s position or using medications.
Changes in the pattern of breathing
Our pattern of breathing is usually determined by our unconscious brain and our respiratory muscles (breathing muscles). As the brain and body shut down, these processes are affected, and as a result, breathing often becomes irregular. This change can lead to pauses in breathing, bouts of quick shallow breaths, and gasping. These changes can suggest that death is approaching; however, this stage can last 24 hours or longer.
Remember that the breathing pattern changes because the person is dying; they are not dying because they have changes in their breathing pattern. This is important to remember to help you understand the experience of a person near the end of life. If a conscious healthy person held their breath for a long time, that person would feel an urgent need to breathe and feel a sense of panic. Their brain detects an imbalance in their oxygen and carbon dioxide levels and sends urgent signals to the body to correct this problem. But the brain of a person who has the breathing patterns associated with the end of life can’t reliably detect changes in their oxygen and carbon dioxide. Because their brain doesn’t detect these changes, it will not send panicked signals or feel an urgent need to breathe. For these reasons, experts don’t believe changes in breathing cause any discomfort or unpleasant sensations for the dying person.
As the body shuts down, normal functions stop working. One function that changes is the way the body regulates blood vessels. Blood vessels play a key role in adjusting our skin tone and temperature. Near the end of life, your child’s skin may look pale or have a blue/purple tone and feel cold to the touch. These changes often appear first in the fingernails and toenails, or around the mouth, including the lips and tongue. While these signs are commonly related to blood vessel changes, they can also be related to changes to the way the heart and lungs are working.
In the final hours and days of life, there may be changes in odour that can worry some families. This change is a normal part of the process that happens as the body slowly shuts down. Good mouth care, light washing, changing bed sheets, and sometimes adding other scents (candles or a diffuser with essential oils if at home or in a setting that allows) can help.
In medical terms, vital signs refer to the exact heart rate, breathing rate, temperature, blood pressure, and oxygen saturations of a patient. However, unlike the changes described above, these signs must be checked either directly, (e.g. feeling a child’s pulse), with technology (e.g. blood pressure cuff), or with a monitoring device (e.g. oxygen saturation monitor). Most people who are in the last stages of their life do not need or benefit from the close monitoring of vital signs.
Some families find that knowing information about vital signs helps them to cope or grieve. But it’s important to know that in the last hours to days of life, there are wide variations and inconsistencies in vital signs (e.g. low temperature, low heart rate, low oxygen saturations, low blood pressure). Some families want information about vital signs because they think the numbers will help them predict when death is close. But most experts feel these readings don't help healthcare providers to know when death will occur. It is always difficult to predict the time of death. The more important signs that death is approaching are those listed in the other sections above. Ultimately, at the time of death, a healthcare provider will perform a check of the vital signs (specifically, heart rate and rhythm) to declare that a person has died.
Vital signs are not the most reliable way to figure out how comfortable a child is in the final stages of dying. The most important way to tell if they are comfortable is to look at their face for any signs of discomfort. Are they calm and relaxed? Or do they grimace or have a furrowed brow? These signs may indicate discomfort or distress. It’s preferable to pay attention to how the child looks and acts, rather than to worry about the numbers.