Recognizing the approaching end of life

When I first started working in the field of hospice, my clinical manager told me (I’m paraphrasing), one day you will be able to walk into the room, and without getting a single vital sign, just by visual observation, be able to tell that the person is dying or will be shortly dying. That was about three years ago. Today, it’s almost chilling for me (as it is both a blessing and tremendous responsibility) to be able to share she told the truth, and that over time — if you give yourself patience and grace and take the time to listen, observe, and remember — you too will learn how to tell when someone is close to or otherwise is dying.

Please allow me to share some of my insight as to how I know a person has less than a month left to live, and often far less. First off, let’s go into the important discussion you should have with the family, friends, and the patient themselves that provides an overall background to the prognosis. That discussion should be centered around what types of decline (downward, negative) changes have been taking place in the patient’s life over the last six months making note as to whether the decline is minor, medium, or major and the frequency (once a month, once a week, etc.) of those changes.

If the patient is having one or more medium to major declines every 3 to 6 weeks, the general guideline for a prognosis is the patient has weeks to months to live. If there is one or more medium to major declines every 1 to 2 weeks, then the patient has days to weeks to live. If the declines (any type) are happening several times per week, then the prognosis is days to weeks to live. And finally, if there are multiple declines per day, hours to days to live.

I’ve walked into new cases where the family just made the hand and finger movements that there was a whirlwind of changes in the past week before the patient was admitted, and just on that information alone I put the patient on daily visits, and they died in less than one week.

As you are visiting the patient (keeping in mind the changes the patient has gone through over the past six months — number, type, frequency), start your exam by asking questions about what has happened in the past week, take note of the patient’s complexion, whether or not they can focus their eyes on you, their breathing (these three being the most significant changes that are often clues as to what is to come), and how they answer your questions.

Have there been any signs of terminal restlessness since your last visit? If non-reversible, this is a common sign they have two weeks or less to live. Is their skin becoming more friable, pale, ashen, glossy (especially their face) appearance? Complexion changes of this nature often mean two weeks or less. Do they appear dazed in terms of their eyes, unable to focus or talking with you and looking at or near you, but appear to not see you? That’s often a sign they are less than two weeks away from dying.

How is their breathing pattern? Your patients will have baselines for them. I’ve some patients where twenty-four respirations per minute is normal and others that range within the standard of 12-to-20. Is the pattern regular? If the pattern is irregular, and this is new to them, that may be a sign there is a neurological change of condition (another decline).

In the last two weeks, I’ve often noticed patients speaking as if they are here on Earth and yet elsewhere spiritually. They see loved ones who have died and often say they speak to them or at least try. To me, this is a critical sign. Sometimes they will even tell you they will know they will be dead by such and such day or date; please take them seriously.

As you note these declines, note if they are every 3 to 6 weeks (may have weeks to months to live), weekly (then ask yourself if there is more than one change which means days to weeks), and so on.

My practice is that if I believe a patient of mine has two weeks of life left to live, with permission from the patient (if they can provide it) and the family (or caregivers if the family is not involved), I increase the patient to daily visits such that a registered nurse visits them daily and let our team know so the chaplain and social worker can be more heavily involved in the case.

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

• Disorientation
• Agitation
• Restlessness
• Picking at clothes
• Confusion
• Talking with the unseen

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 surge of energy (“Rally”)
• Decrease in blood pressure
• Eyes glassy, tearing, half-open
• Irregular breathing: stop, start (Cheyenne Stokes or Agonal)
• Death Rattle breathing
• Restlessness or no activity
• Purplish, blotchy knees, feet, hands (mottling)
• 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