End of Life Time Line

Symptom Timelines

The question I am asked most often is "How long?" While the end stage path varies from person to person, there do tend to be commonalities that
can help us to "see what we're seeing," and often, to estimate how much time might remain.

First of all, how do you know "it's really time"? There are a few points that tend to help families realize that the disease is truly progressing and that
preparations are in order. This discussion can be found on the page entitled The Hospice Decision.

Many of us are late to call in hospice---there's no shame in that---and we don't realize until later, with 20-20 vision, that the help probably could
have been used earlier. It seems that most brain tumor patients tend to average 1 month or so under hospice care, though the disease may have
been progressing well before that time. Our community, then, offers hospice workers little exposure to and experience with this disease, so it's
important to know that unless your specific hospice nurse has worked with end-stage brain tumor patients before, his or her answer to the "How
long?" question almost always tends to be a longer-than-actual prognosis.

Why? Death to other forms of cancer tends to be much different. There is likely to be a longer period of weakening and decline, and more of a
heads-up from the vital signs. With other cancers, there tends to be an organ-by-organ alert that the body is losing the battle. In contrast, some
brain tumor patients---especially those in their 20s and 30s---might still be conversing or even walking themselves into the bathroom just a couple
of days before their passing. Nurses whose experience has been largely earned with other cancer care aren't always aware of one critical point: the
brain, as a master circuit breaker, has the capacity to shut down the body in one motion, without taking it organ by organ.

So...how long? This list is a very, very loose guideline based on what has happened to other people, but it may be helpful in beginning important
discussions with the patient's doctor and family. In order to serve as a helpful guide, most of what's listed under each time heading would need
to be occurring. Remember, though, that everyone is different. Too, patients in their 20s and 30s as well as those whose brain tumor journeys
have already been quite long tend to spend longer in each of these stages.

3-6 Weeks Prior to Death

Motor
Increasing weakness on the affected side
Falling due to resistance to accept help
Need for more assistance with walking, transfers

Urinary/Bowel
Urinary/bowel incontinence may begin

Cognitive/Personality/Speech
Confusion and memory loss
Harder to sustain a conversation
May say some odd things that make you think "Where did that come from?"
May ask less about the next treatments or appointments
May ask clear, rational questions about death, arrangements, etc.

Physical
Increasingly tired, more easily "wiped out" after simple activities or outings
Headaches may indicate increased swelling
More likely to nap or to phase in and out of sleep

2-3 Weeks Prior to Death

Motor
May begin to see weakness starting on the non-affected side
Affected hand may curl in or be kept close to the center of the body
Legs begin to buckle, eventually leading to dead weight when attempting to stand
If still walking, may wander around the house a little, as if restless
May find it difficult to hold the head up straight or may slump over

Urinary/Bowel
Urine becomes dark (often described as "tea-colored")
Less warning before urination (more urgency)

Cognitive/Personality/Speech
Less interest in matters of the home and family, hobbies, or world at large
Detached, without curiosity
Harder to have an effective adult-peer conversation
General restlessness/agitation
Word-finding difficulties (conversation may be very slow)
Confusion over what time of day it is (sundowner's syndrome)
Speech may be slurring or trailing off, unfinished
May begin saying things that sound like awareness that time is growing short
May begin to seem more "childlike"
Confused by choices; yes/no questions seem to work best

Physical
Losing interest in transferring or leaving the house
Seems to feel safest on one particular piece of furniture
Begins to have problems swallowing, if not already
Appetite may become sporadic
May be sleeping 20+ hours a day, with short alert times between sleep
May doze back off after eating
May describe vision changes such as double vision, loss of peripheral vision, or black spots
No longer interested in activities that require close vision, such as reading

1-2 Weeks Prior to Death

Motor
Often, completely bedridden
Younger patients may still be stubborn about getting up, though requiring assistance
May hold on to the bedrail or to a caregiver's hand, hair, or clothing very tightly

Urinary/Bowel
Usually incontinent by now
May continue to express urinary urgency, without producing anything

Cognitive/Personality/Speech
May find loud or multiple sounds irritating
After waking, seems confused for several minutes
Staring across the room, up toward the ceiling, or "through" you
May look at TV but seem not to be watching it
May make mention of "getting ready" or "having to go," without knowing where
May refer to travel, packing, or gathering clothes
May talk about tying up loose ends (specific to the individual)
May mention seeing visions in the room (I've heard everything from horses to angels to deceased mothers-in-law)
Communication seems to take more effort and makes the patient winded or tired
Doesn't initiate conversation as much, though still giving brief responses to questions
Agitation may build
Likes to keep the primary caregiver in sight and may panic when he or she is not in the room
May seem especially irritable with large groups of visitors or young children (probably because understanding conversations requires more work)

Physical
Sleeping "almost all the time"
Can sleep even in a room full of activity and noise
Harder to rouse from sleep
Brief, scattered periods of alertness
Increased difficulty swallowing pills or liquids
Vision deficits increase
Eyes may look glassy, milky, cloudy, like "elderly eyes" or "fish eyes"
May reach toward the head during sleep (may indicate headache pain)
May have a distended abdomen
Vital signs are likely to still be good
May begin to have need for pain management

5-7 Days Prior to Death

Motor
May restlessly move the legs, as though uncomfortable
Most patients would no longer be leaving the bed by this stage
May reach up or out with the arms
May pick at the bed linens as if covered with small objects

Urinary/Bowel
As liquid intake decreases, output also decreases
The bowel becomes quite sluggish and there may be few/no bowel movements

Cognitive/Personality/Speech
Minimally responding to caregiver's questions
May begin sentences but not be able to finish them
May say things that are impossible to make out or things that don't make sense
May chant something ("Ohboyohboyohboy..." or "Ohmyohmyohmy...")
May continue to seem restless and fidgety, as if late for something
May be irritated by strong sounds or odors

Physical
May be taking only minimal amounts of food (a spoonful or two, here and there); some, however, continue to eat well until about 48 hours
before death
Decreasing intake of fluids
Administration of meds becomes harder or impossible
Dosing of meds becoming sporadic due to sleep schedule
May find it hard to clear the throat as mucus increases
The voice may lower and deepen
May have a wet cough
Vital signs often still good
Nearly always sleeping or resting
May be uncomfortable being moved during clothing or linen changes
Dramatic withering of the legs due to inactivity (skin 'n' bones)
May have a low-grade fever

2-5 Days Prior to Death

Motor
Motor movements (eg, waving or hugging) are likely to appear weak
Unable to help the caregiver by leaning or moving during linen changes

Urinary/Bowel
Bowel activity likely will have stopped
Urine output will lessen considerably
Urine color usually lightens

Cognitive/Personality/Speech
Very little interaction, often no initiation
Speech may be quite slurred and hard to understand
May sit in the room with others and say nothing for hours
Could be described as "neither here nor there"
Restlessness and agitation give way to calm

Physical
Hands and feet may become cool
Forehead and cheeks may be warm or hot
Thighs and abdomen may be warm or hot
Hard to keep the eyelids open, even when awake
May spend a couple of days with the eyes closed, even though still slightly responsive
Minimal interest in food
May turn or clench lips to indicate refusal of food or pills
May seem unaware of how to use a straw
May have had last decent fluid intake
May bring mucus up into the mouth with a productive cough
Last Decadron dose may be administered (either intentionally or due to difficulty of administration)
Some drugs may be given only by suppository or dropper now
Vital signs often still normal, but some report cardiac changes (eg, racing heart)

Final 8-48 Hours

Very difficult to rouse from sleep or elicit a response from
May have no response or only nonverbal communication (eg, winks, waves, or nods)
May seem relaxed and comfortable
Usually very minimal or no urine output
Reaches a point of unresponsive sleep (coma), which can last from 1 hour to most of the day
No longer any involuntary movement during sleep (no fidgets or eye movements)
Mouth may slacken and eyes may remain partially open during sleep, as voluntary muscle control is lost
Vital signs may be OK until just hours before death
Blood pressure may drop significantly
Heart rate may be twice-normal (120-180 beats per minute)

Just Hours

No response whatsoever from the patient
No movement
Breathing changes (of any kind at all)---sometimes faster, sometimes slower; sometimes harder, sometimes more faint; sometimes louder
sometimes inaudible
Mucousy breathing (the "death rattle"; harmless echo of air over mucus)

Time of Death

May let out a sigh
Respiration may slow so much that caregivers believe the last breath was taken, but a few more reflex breaths may follow
May open the eyes as they pass on
Will appear very relaxed

Shortly Afterward

Many have commented that the face looks younger, the forehead looks free from wrinkles and cares, and the steroid bloating begins to disappear.