Dying vs Active Dying: What’s The Difference?

The term “active dying” is used when someone is in the very last stages of the dying process. This is very different than dying because, in most cases, the physical and mental/emotional states of someone in the active dying stages are identifiable and distinguishable from the slower wind down that happens when they are dying or in decline.

Dying vs Active Dying

The dying process typically happens in one of two ways. Either we die very quickly due to a heart attack, stroke, or traumatic injury. Or, we die slowly over years, months, or weeks. In the latter case, we typically undergo a decline related to a specific disease or illness. Once in a while, some people simply wind down due to old age and the body’s slow shutdown. Sometimes we “live” for a while pursuing curative treatments and therapies or taking medications. However, there is almost always a point where the dying process shifts into the undeniable “active dying” or “transition” phase. 

Signs A Loved One Is Actively Dying (Or In Transition)

Most literature describes active dying as the last three to four days. However, depending on the internal emotional, mental, and spiritual process a person is working through in the final days of their lives, we’ve had patients who were in a pre-active dying state for a week or more. This means their bodies exhibited signs of active dying we described below, but they live longer than average in that state. Here are some of the most common signs that a loved one has gone from dying to actively dying, in which case they probably only have a few days to a week or so left. 

Complete lack of interest in food or water

Most people’s appetites wane months or weeks before they die. This wind down continues more drastically in the week to days leading up to death. By this point, most people do not want any food (or may already be unconscious most of the time – see next), and the only hydration they receive is via sponges dipped in water to comfort their dry mouths and lips.

Sleeping most of the time or completely unresponsive

By the time someone is in the active dying phase, particularly after the end of a long healthy life or via terminal illness, they begin sleeping more and more. This eventually transitions into an unresponsive or largely unresponsive state. They may open their eyes and look around sometimes, smile, or seem to see things in the distance, but they spend the majority of the time they have left in a retreat state.

Changes in urine output and bowel movements

The digestive system shuts down before we die, which is one of the reasons we advocate honoring a loved one’s resistance to food. The body doesn’t have the energy or ability to process food and liquids. This eventually leads to incontinence (if it wasn’t present already) or a decline in urine/bowel output. Any urine produced will likely be darker in color. This is completely normal, but your hospice team is there to provide input if you’re concerned.

Confusion or delirium

The clinical world describes what happens as “confusion” or “delirium.” As long-time hospice care providers, we’re not so sure. We invite you to be 100% supportive of whatever your loved one talks about, sees, or hears during this time – even if it involves people or things you can’t see.  Dying people frequently speak in metaphors or symbolic language because they’re not as anchored in the logical, linear world anymore. So, mom might say something like, “Bring me those roller skates, I’m ready to head down the skating hill,” or, “I’m trying to find my tickets for the train, but I can’t find them.”  In most cases, reassuring them and letting them know they’ll get the skates or find the tickets when it’s time to go puts them at ease – and you’re getting to witness the sacred and mystical aspects of the dying process. Don’t assume that ‘nonsense’ talk or seeing things you can’t perceive is related to medication. That does a disservice to the dying and means you can miss out on meaningful messages and requests.

Changes in body temperature and blood pressure

As the body’s systems shut down, their temperature may be more erratic – sometimes running a fever of 100 or so, other times registering temperatures lower than the standard 98.6. This is very common. Pay attention to body cues and add or remove soft blankets (or adjust the home temperatures) to help them remain comfortable. It’s also common for their blood pressure to drop significantly. This is also normal.

Mottled, blue, or greyish hues

As you can imagine, circulation slows considerably, and this leads to color changes. Typically, these begin in the extremities (hands and feet). Don’t be alarmed if their skin tone changes to a gray or blueish appearance. It may also become mottled. When this happens, their feet and hands will feel cold to the touch.  Unless they are shivering or sweating or able to express discomfort, they are not in pain or uncomfortable. They exist in an altered state and are far less aware of their physical bodies than you are.

Fluid in the lungs and the “death rattle”

In the last days and hours, fluid build-up in the lungs and slower (and skipped) breaths lead to what we call the “death rattle.” This is one of the most tell-tale signs someone is actively dying. They are not suffering, although the sounds of the death rattle often cause loved ones to worry.  As they get closer to death, their breathing slows considerably, and some people may even pause for a minute or more between breaths, only to resume normal breathing again. Your hospice team is there to support you as needed during this last phase. Your job is simply to be present, quiet, and contemplative. You can pray, and express last words of comfort and love. The less you do, the more present you can be as you witness this last transition.

Let Us Help Support Your Actively Dying Loved One & Family

Are you in the process of ceasing curative treatments? Have daily tasks become harder to complete on your own as you or a loved one slows down due to disease or age-related changes? Schedule a consultation with Hospice of the Golden Isles to learn more about our services and how we can support you during both the dying vs active dying phases.