Living is a continuum. Scientifically, we start life (as preborn human beings) from conception and actively live through the birthing process as we grow from child to adolescent to adult. We are actively living without regard to the quality of life we are living at the time. As we arrive closer to death, we often go through a transitioning phase before actively dying.
In this article, I would like to discuss the dying process at the end of life, answering frequent questions such as “What is transitioning?” “How do I know if my loved one is actively dying?” and “What are the phases of dying?” The phases of dying can be divided into two phases: transitioning towards actively dying and actively dying.
The Transitioning Phase
This is the start of the dying process that, for most people, is a mystery from the standpoint that their loved one may still be eating, talking, and, in some rare cases, even somewhat mobile. This phase can last seconds in the case of a sudden event like a myocardial infarction or one to a handful of weeks.
Clues that your loved one is starting to transition include the following:
Their complexion may start to change subtly at first, becoming more pronounced the closer they are to actively dying. For some, this may be a matter of degrees of whiteness and greyness, and for others, a flushed appearance.
Your loved one may tell you they are seeing those who have died and often say they speak to them or at least try.
They spend more time alone, napping, or sleeping.
They are eating significantly less than they did over the previous few days to a handful of weeks.
You may notice changes in breathing, such as breathing faster, slower, or irregularly.
They may have moments of increasing fixation, where they look through you rather than at you.
They lose the ability to walk and help themselves with repositioning
They are experiencing increased difficulty eating as they begin to lose their gag reflex.
The more time your loved one spends sleeping (out of consciousness), the more frequent the changes, especially respirations, complexion, and the more likely they are coming towards the end of the transitioning phase and heading into the actively dying stage.
The Actively Dying Phase
The active dying phase starts when your loved one is unconscious, and sometimes it can be hard even for healthcare professionals who have worked with death and dying for years to know the exact end of transitioning and the exact start of the active dying portion. So much so that one of my former clinical managers who worked in hospice for approximately fifteen years would tell staff to tell families when we believe they are transitioning that their loved one is dying (therefore ignoring — which is not necessarily a terrible thing as it does reduce the complexity of it all — the two phases by combining them into one phase). The active dying phase involves the following:
Your loved one is extremely close to being or already in a comatose-like state. Indeed, natural death often involves dying in your sleep.
The changes to your loved one’s complexion become more apparent.
Your loved one’s respirations—which are a crucial signal to changes of condition—are either extremely fast (hyperventilation—typically 28 respirations per minute or faster; the average is 12 to 20 in adults) or extremely slow (normally ten respirations per minute or less) or vacillating between fast and slow.
Your loved one’s heart rate may become extremely fast (tachycardic; it’s common to be at 120 or higher beats per minute; normal for adults is 60 to 100). At points, their heart rate may become very irregular.
Their ears may start to pin, and their ear lobes may be so close to their neck that you would think an imaginary pin is holding them that close to your loved one’s neck.
They may develop a terminal fever, which cannot be broken with acetaminophen or other medications.
They may start to experience death gurgles (death rattles), which can occur due to the loss of the gag reflex. As a result, saliva, mucus, phlegm, and other fluids become stuck in the oropharyngeal portion of the airway, causing air to move through these fluids and produce a gurgling or rattling sound. If this happens to your loved one, they are not suffering; it has a minimal impact on their breathing. Raise the head of the bed to a 45-degree angle, have them on their left or right side (use a wedge pillow or pillows to prevent them from sliding onto their back), and then use the medication your hospice provider had sent to you to help control excess secretions such as Atropine or Hyoscyamine per the frequencies the hospice nurse educated on you.
They may or may not develop mottling (areas of dark pink or purple-colored areas) on their extremities, which occurs due to the circulatory changes happening in the body.
Your loved one may develop unpreventable pressure injuries to areas of bony prominences, such as your loved one’s elbows, hips, knees, and tailbone.
Often, hours before dying, your loved one will have a large amount of urine (I view it as the body cleansing itself) and even a bowel movement (it might just be a smear) as the body prepares itself for the end.
Moments before death, as the active dying phase comes to completion, your loved one’s respirations (it cannot be stressed enough that changes to respirations — pattern/rhythm and rate are critical signs of changes in condition) will become more erratic. If your loved one didn’t have any death rattle until this point, secretions may start coming out of their mouth. Soon, they will take their last breath, which may sound like a gasp; fluid may come out of their mouth, and it’s now the end (for them, but not for you, as you are among the ones left standing).
Complaints of the body being tired and feeling heavy
Not eating, taking little fluid
Body temperature: hot, cold
Decreased urine production — urine becomes tea-colored
Urine and/or bowel incontinence (writer note — it is common for there to be a release of urine more than anticipated and often stool, if even a smear of feces, hours to a day or two before death; I view this as the body preparing itself and cleansing itself for death).
Days or Hours to Death
Intensification of one to two weeks signs
A surge of energy (“Rally”)
Decrease in blood pressure
Eyes glassy, tearing, half-open
Irregular breathing: stop, start (Cheyenne Stokes or Agonal)
Currently, there is no universal director of end-of-life doulas (EOLD). It’s essential to note that some EOLDs listed in directories may no longer be practicing. The author recommends starting with IDLM, as their training program is always current and thorough, followed by NEDA, which is the only independent organization not affiliated with any school.
