These are loose guidelines, please remember that everyone is different and not each of the items under the heading will occur. This may be helpful in starting important discussions with a partner, doctor, or family.
3-6 Weeks Prior to Death
Motor
- 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
- More likely to nap or to phase in and out of sleep
2-3 Weeks Prior to Death
Motor
- 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
- Detached, lack of 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
- Sleeping 20+ hours a day, with short alert times between sleep
- Dozing off after eating
- Describing 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”
- Harder to rouse from sleep
- Brief, scattered periods of alertness
- Increased difficulty swallowing pills or liquids
- Increased vision deficits
- Eyes may look glassy, milky, cloudy, like “elderly eyes” or “fish eyes”
- 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
- 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
- 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 and bones)
- May have a low-grade fever
2-5 Days Prior to Death
Motor
- Motor movements (e.g, waving or hugging) likely appear weak
- Unable to help 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
- Some drugs may be given only by suppository or dropper now
- Vital signs often still normal, but some report cardiac changes (e.g, 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 (e.g, 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
- 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)
- Respiration may slow so much that loved ones believe the last breath was taken, but a few more reflex breaths may follow
- May open eyes as they pass on
- May appear very relaxed
Shortly Afterward
Many have commented that the face looks younger, the forehead looks free from wrinkles and cares, and steroid bloating, if any, begins to disappear.
Source: http://www.brainhospice.com/SymptomTimeline.html
Psychosocial Care at Time of Death
The Family
1. Responses
The family may have varying needs at this time. For example, they may wish to stay close to the person who died and have private time with them. Time to say goodbye may include prayers or rituals, preparation of the body, reminiscing and spending family time. It is common for family to repeatedly check the body and review the time of death. Sometimes family will not want to be in the presence of the body but will still want time for these same closure activities.
2. What Helps
It is helpful to provide opportunities for family to acknowledge their particular needs at this time. As mentioned above, these may include time with the deceased, preparing the body, rituals, prayers, and saying goodbye. Opportunities for family to come together and support one another in a comfortable way will be appreciated. Privacy, respect, unlimited time, and easy access to the deceased are aspects that need to be considered.
