What Happens When Someone Is Dying?
When someone we love is dying, one of the hardest parts can be not knowing what is normal. We see something change and our immediate reaction can be, Oh my God, something is wrong. They aren't eating. They're barely drinking. Their breathing sounds different. They're restless. They're pulling at things. They're making noises they've never made before. We can very quickly go into panic mode because we don't know what we're supposed to be seeing or what we're supposed to do.
I want to start this by saying that this is not medical advice and every person is different. There are medical conditions and situations that can look similar to the normal dying process, so if you're ever unsure about something you're seeing, call the person's hospice team, nurse or medical provider and ask. One of the most important things you can do when someone is on hospice is actually use that team. You do not have to sit there wondering if something is normal. Call them. Ask questions. Let them explain what is happening and what you can expect.
As the body begins to shut down, there are a lot of changes that can happen. One of the things that families often struggle with is eating and drinking. Your loved one may stop wanting food or may eat very little. They may also drink less and eventually stop drinking altogether. This can be incredibly difficult to watch because our brains immediately go to, They're hungry. They're thirsty. We have to get them to eat. We have to get them to drink. But as the body is dying, it no longer needs or processes food and fluids in the same way it did before. Trying to force food or fluids can actually make someone more uncomfortable. This is something hospice can help you understand and they can show you ways to keep their mouth comfortable without trying to make them eat or drink when their body no longer wants or needs it.
You may also notice changes in their breathing. Their breathing can become irregular, with periods where they breathe more quickly followed by slower breathing or pauses. One particular breathing pattern you may hear about is called Cheyne-Stokes respirations. This is when the breathing gradually becomes deeper or faster, then gradually becomes shallower or slower, followed by a period of apnea, which means they stop breathing for a period of time before the cycle begins again. Not every person will have Cheyne-Stokes respirations, but it is something that can occur during the dying process. These changes can be incredibly hard for us to watch because we are used to thinking that a change in someone's breathing means something is wrong and we need to intervene. During the dying process, however, breathing can change as the body begins to slow down. This is one of those times where your hospice nurse can be an incredible resource because they can explain what you're seeing and help you understand whether your loved one appears comfortable.
Another thing that can really scare families is the sound of secretions. Sometimes you will hear what people describe as a rattling, gurgling or wet sound when someone is breathing. This is sometimes called the death rattle or terminal respiratory secretions. It can sound awful to us. We hear it and immediately think, Oh my God, they're choking. They're drowning. They're suffering. But that sound does not necessarily mean that the person is choking or experiencing the same distress that we would if we were awake and had those secretions in our airway. As the dying process progresses, people often lose the ability to swallow and clear those secretions the way they normally would. The sound can be much more distressing for the people sitting at the bedside than it is for the person who is dying. Hospice can help you understand what you're hearing and what can be done to keep your loved one comfortable.
You may also see changes in their level of awareness. They may sleep much more. They may be difficult to wake up. They may drift in and out of consciousness or seem confused about where they are. Sometimes they may talk to people who aren't there or seem to be seeing or hearing things that we don't. That can be incredibly confusing for families, especially if they've never seen it before. There can be many reasons for changes in awareness during the dying process, so this is another situation where you want to let the hospice team know what you're seeing and allow them to help you understand what is happening.
Terminal agitation, sometimes called terminal restlessness, is another thing that families may encounter, and this one can be especially difficult emotionally. Someone who is dying may become restless, agitated or confused. They may move around constantly, try to get out of bed or repeatedly pull at blankets, clothing, catheters or other things around them. They may seem angry or frightened. They may say things that don't make sense or behave in a way that is completely different from how you know them.
If you've never seen this before, it can be heartbreaking. You might think, Why are they doing this? Do they not want me here? Are they angry with me? Do they know who I am? Did I do something wrong? Their behavior during this stage does not necessarily reflect how they feel about you or whether they want you there. There can be many contributing factors to agitation and restlessness at the end of life, including changes happening in the brain and body, medications, pain, infection and changes in oxygenation. This is something you should absolutely tell the hospice team about because they can help determine what may be contributing to it and how to keep your loved one as comfortable as possible.
You may also notice changes in their hands and feet. Their skin can become cooler and their hands and feet may change color. You may notice a blotchy, purplish, reddish or bluish appearance developing on the skin. This is called mottling, or mottled skin, and it can happen as circulation changes during the dying process. You may also notice that the person's skin feels cool even though they don't necessarily feel cold in the way that you or I would. Their body temperature can change as well. These things can look frightening when you don't know what you're looking at, especially if this is the first time you've ever been at the bedside of someone who is dying. Having someone explain ahead of time that these changes can happen can make them a little less terrifying when you actually see them.
And this is why I cannot stress enough how important your hospice team can be during this time. You do not have to become a medical expert because someone you love is dying. You don't have to know what every sound means. You don't have to know whether every change is normal. You can call the nurse and say, This is what I'm seeing. Can you tell me what is happening? You can ask them to come out and assess your loved one if that's appropriate. You can ask questions. You can tell them you're scared. That is what they are there for.
An end-of-life doula can also be part of that support system. A doula is not there to replace hospice, the nurse, the doctor or any other medical professional. We have a different role. We can help you understand what you're experiencing, sit with you while you're processing it, give you space to step away and take a shower or eat a meal or simply breathe for a minute. We can help with practical things and emotional support. Sometimes you just need another person there who understands that what you're seeing can be a normal part of dying and that you don't have to be alone while you're witnessing it.
I also want to talk about the fact that sometimes seeing someone die is just really fucking hard. Even when you know something is normal, that doesn't mean it's easy to watch. Knowing that someone's breathing changes can be expected doesn't magically make it comfortable for you to sit there and listen to it. Knowing that someone may stop eating doesn't mean your brain is going to stop screaming that you need to feed them. Knowing that terminal agitation can happen doesn't mean it won't hurt when the person you love is confused or restless.
You are allowed to have feelings about this. You are allowed to be scared. You're allowed to step out of the room for a few minutes. You're allowed to cry. You're allowed to say, I don't know what I'm doing. You are allowed to ask for help. Supporting someone through the dying process doesn't mean you have to be completely calm and put together every second of the day.
The more we understand about what can happen as the body begins to shut down, the less likely we are to panic over every change. That doesn't mean we ignore changes or assume everything is normal. It means we have people we can call and questions we can ask. Let hospice be part of your support system. Let your end-of-life doula support you. Let your family and friends help you. You don't have to figure this out by yourself, and you don't have to pretend that watching someone you love die is easy.
