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| * The final stage involves a change in the patient's breathing, usually very
* Breathing may grow more labored and much faster...or more faint and
much slower (some caregivers have reported hearing only 10 breaths
* Breath sounds may grow louder (sometimes audible even from another
room) or softer and much harder to hear
* A mucousy sound may develop, causing a sort of snore-breathing
* What some people refer to as the "death rattle"---loud breathing that
resonates from deep within the chest---may begin hours before death
* The most important change is change itself---whenever there is a new
breathing pattern, the caregiver should be vigilant, and if the patient
has shown most of the other signs and has consumed very little or
no water in recent days, death may be imminent within hours or
within the day
* Most patients are in a form of coma when they reach this stage, and
it is believed that they are protected from pain; however, if care-
givers believe that labored breathing may be an expression of
discomfort, discuss with hospice or the physician whether morphine
or another pain management measure would be appropriate
* Some believe that end-stage patients may be able to choose the time of
their death---holding out for a special anniversary, waiting for a
loved one to arrive, or even waiting for caregivers to be out of the
room in order to "spare them"---but because the patient is probably
in an end-stage coma at this time, it is unlikely that the timing of the
death is voluntary
* For most patients, the last breath is a quiet, gentle sigh, making the
transition surprisingly less difficult to witness than caregivers may
|What the Patient May Be Feeling
* Unlikely to be awake or alert
* Most likely to be in an end-stage coma, so that there is no conscious
* Unlikely to be experiencing pain, although with labored breathing the
caregiver may want to discuss this issue with the hospice nurse
or the physician
* Probably feels relaxed comfort and total unawareness of the surroundings
* May be aware, on a subconscious level, of the loving presence of the
primary caregiver and others close to him or her, through a fading
sense of hearing or touch
|What the Caregiver May Be Feeling
* Uncertain about whether to call the hospice nurse and when to do so,
"since they won't really be able to do anything"
* Afraid that the final hours may be difficult or painful for the patient
* Worried that the patient will linger at this stage for an unnecessarily
long period of time
* Disbelieving that "this is it"
* Experiencing swirling thoughts about logistical concerns (eg, How will
the body be handled once the death has occurred? Will long-distance
loved ones arrive on time? How do I handle specifics about the final
* May wish that certain arrangements had been handled in advance, as a
long list of things to do begins to form itself mentally
* Unaware of fatigue or hunger while focusing on the patient in his or
her final hours
* Desperate to express all loving thoughts and promises in hopes that the
the patient is able to hear them
* Emotionally strong, focused, and resolved to make the final hours
count---a rush of maternal/paternal protective instincts or of
adrenaline perhaps (as described by those who have accomplished
amazing selfless rescues)
* Afraid to doze off or "blink and miss it"
* May entertain guilty thoughts as to missed opportunities in the final
weeks, wishing to go back in time and recapture special moments
or say things that may now go unheard
* May wish that he or she had recognized the nearness of death sooner
in order to accomplish more somehow
* If children are involved, concerned about how they will handle news of
the imminent death or the loss itself
* Delaying dealing with his or her own feelings because "there's so much
that needs to be done" or because others seem to require more
emotional support at the moment\
* Numb, in shock, or "on auto-pilot"
Phone hospice or the physician when a serious change of breathing has begun. Hospice will generally dispatch a nurse, but it may take an hour or more for him or her to arrive. The hospice nurse will be able to pre-certify the death when it occurs and will assist you in contacting the funeral home or crematory. The funeral home is dispatched accordingly, and the representatives tend to be quick, respectful, and discreet.
If a medical professional is not present at the time of death, note the time in case he or she would like to record it on the necessary forms.
Experts say that the sense of hearing is the last to go. This may be true as well for the sense of touch. Continue to express your love by talking comfortingly to the patient and holding his or her hand or performing gentle massage.
Some caregivers have found comfort themselves in climbing into the bed alongside the patient during this final stage, where they feel they can hold him or her more easily and comfortably than they can from the side of the bed.
Turn off all background sounds like those from a TV or radio while speaking to the patient, as they may minimize what the patient may be able to hear. To maximize comprehension, should the patient still be able to hear, speak in short sentences and thoughts separated by pauses:
Not: "Honey, you've always been the very best son two
parents could ever ask for. We've always been so
proud of you. We know it's so hard for you to keep
fighting, but you have been so brave through all of
this. We will never stop loving you."
Better: "Mike...the best son...proud of you...hard to fight...
so brave...love you."
Family members and close friends who would like to express farewell in person should be quickly alerted to this final change.
Some family members who are unable to be there due to distance have found comfort by having the local caregiver hold the phone to the patient's ear and communicating their love in that way.
If young children have expressed a wish "not to be there at the end," this would be the appropriate time to allow them a final goodbye before leaving with a prearranged caregiver.
As hard as it may be to come to grips with, there may be family members who find it too difficult to be present at the time of death. This is not the time to debate how others "should" handle this surreal moment. Each person comes to the situation in his or her own way, and trying to understand others' motivations can be exhausting and counterproductive during an imporant time like this, when families should draw close, not pull apart. Some personal issues like these can best be addressed later, with or without the help of a grief counselor. Most important is to give to the experience whatever will best help you to move forward in your healing later.
Avoid leaving the room or falling asleep during this critical time, as some patients have been known to open their eyes once more before the last breath. If physically exhausted, however, stay close but give in to the sleep without guilt. If another caregiver is present, he or she can keep watch and wake you if needed. At this point, household obligations can wait, as the minutes are truly numbered.
Don't worry about the logistics of final arrangements and the travel arrange-ments of others until after the death has occurred. Most funerals are not held until 2-3 days after the death, and although there will be much to do, there will be a lot of time and probably extra hands to help get everything accomplished.
If the death occurs when you are not present, don't take it personally. With your loving ways, you were very much present by caring when it mattered most, and your loved one will be moving on with no doubt about your feelings for him or her.