Introduction

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:

  • They have increased restlessness, which may be a sign of
  • Their complexion may start to change subtly at first, becoming more pronounced the closer they are to actively dying. For some, this may be degrees of whiteness and greyness, and for others, flushed.
  • 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 the previous few days to a handful of weeks.
  • You may notice breathing changes where they breathe faster, slower, or irregularly.
  • They may have increasing moments of fixed staring where they look through you vs at you.
  • They lose the ability to walk and help themselves with repositioning
  • They have increased trouble eating as they are starting to lose their gag reflex.

The more time your loved one spends sleeping (out of consciousness), the more frequent the changes, especially respirations, and 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 near to being or already in a comatose-like state. Indeed, natural death often involves dying in your sleep.
  • Their gag reflex is gone, so you mustn't give your loved one anything to eat or drink. No! Your loved one is not being starved or dehydrated to death!
  • 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 have death gurgles (death rattles) that can happen due to the loss of the gag reflex, and saliva, mucus, phlegm, and the like get stuck in the oropharyngeal portion of the airway where air moving through those fluids makes a gurgling or rattling sound. If this happens with your loved one, they are not suffering; it minimally impacts 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 educated on you.
  • They may or may not develop (areas of dark pink- or purple-colored areas) on their extremities, which occur 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 ) will become more erratic. If your loved one didn't have any 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).

In addition to the above, let me share some key highlights from the book Gone from my sight: The Dying Experience by well-known and expert Barbara Karnes, RN:

One to Three Months Before Death

  • Withdrawal from the world and people
  • Decreased food intake
  • Increase in sleep
  • Going inside self
  • Less communication

One to Two Weeks Before Death

MENTAL CHANGES

PHYSICAL CHANGES

  • Decreased blood pressure
  • Pulse increase or decrease
  • Skin color changes: pale, bluish
  • Increased perspiration (clammy)
  • Respiration irregularities
  • Congestion
  • Sleeping but responding
  • 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 of energy (“”)
  • Decrease in blood pressure
  • Eyes glassy, tearing, half-open
  • Irregular breathing: stop, start (Cheyenne Stokes or Agonal)
  • breathing
  • or no activity
  • Purplish, blotchy knees, feet, hands ()
  • Pulse week and hard to find
  • Decreased urine output
  • May wet or stool the bed

Minutes to Death

  • “Fish out of water” breathing (Gasping breathing)
  • Cannot be awakened

Resources

Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

Preparing the patient, family, and caregivers for a “Good Death.”

Velocity of Changes in Condition as an Indicator of Approaching Death (often helpful to answer how soon? or when?)

The Dying Process and the End of Life

The Last Hours of Life

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Gone from My Sight: The Dying Experience

The Eleventh Hour: A Caring Guideline for the Hours to Minutes Before Death

By Your Side, A Guide for Caring for the Dying at Home

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