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What to expect generally
Many people have never experienced
being present when a person dies. The movies certainly do not
give us a realistic picture of what to expect. Of course, much
of the process depends on what is causing the person to die.
However, there are some generally common elements. One nurse
explained the last week or two as a process of the body shutting
down, one organ system at a time. She used the analogy of cleaning
a house in preparation for moving. In such a case, we typically
clean each room, one at a time, and then close the door when
we are done. The body seems to do the same kind of thing in
preparation for death.
For instance, the first organ
system to "close down" is the digestive system. There
is really no need to keep processing food and nutrients if the
body is not going to continue much further into the future.
The patient, therefore, will begin to lose interest in food
and will eventually stop eating and lose the sensation of being
thirsty. As a result, he or she will also stop having bowel
movements, and what urine is produced will generally be minimal
and rather dark in color. (This dehydration in preparation for
death may actually help to reduce congestion in the lungs.)
The loss of appetite and thirst is essentially the body shutting
down the digestive system and "closing that door."
Conscious awareness is often the
next system to close down. It takes a lot of energy to follow
conversations, speak, and track what is going on around you.
At some point, this will be too much, and the person who is
dying will become less and less "present." This withdrawal
may take the form of sleeping a lot, or fading in and out of
a coma-like state. Or, it may take the form of disorientation.
People who are dying may see things that the rest of us do not
see. Frequently they speak to people who are not really there,
and it’s not unusual for them to speak the names of people
from their past who have already died.
While the dying may fade in and
out of awareness, they do appear to retain their sense of hearing
and their sense of touch until very close to the end. Holding
hands, gently massaging the feet, or wiping the brow are all
things you can do to help comfort a person who is dying. As
well, because the dying continue to hear and understand what
is said, even if they seem to be asleep, it seems to be reassuring
to speak words of love and affection. (Many family members have
been surprised, and even embarrassed, to have a loved one respond
to something that was said under the assumption that the dying
person was asleep and not able to hear the conversation!)
As a general rule, it is the heart
and lungs that "close down" last. This usually involves
a process of slowing down and then fading away. In the last
few days the lungs begin to fill with fluids such that breathing
is accompanied by a wet, crackling kind of sound. This congestion
can be minimized by withholding fluids and "allowing"
the dying person to become dehydrated. Although alarming to
hear, it is a normal part of the dying process and does not
appear to reflect pain or discomfort for the patient. (If you
are worried that the patient is distressed, you can ask your
physician for medications to help reduce any respiratory congestion,
or a suction machine you can use to clear the passage ways.)
In the last few hours or days, both the heartbeat and the breathing
pattern can become irregular. The dying can have periods when
their breathing is quick and shallow, followed by periods when
their breathing is drawn out. Toward the end, a person can go
as long as 10-60 seconds between breaths. This does not appear
to be distressing for the patient, but it can be exhausting
for those who are present in the room as they wait anxiously
to see if the person is going to draw another breath. (Return
to list)
Common problems and what you can
do
Some family members are tempted,
especially as the breathing becomes irregular, to call an
ambulance and move their loved one to the hospital. Certainly
that is an option if keeping the dying person at home is too
traumatic for the family. However, for the person who is dying,
the commotion surrounding a move to the hospital may be very
uncomfortable indeed. It’s wise to talk with the patient
weeks ahead of time to determine where it is that he or she
prefers to die. You may want to consult with your family physician
to learn what you can expect at the end and make plans about
what you will do as death approaches. There is usually no
need to go to a hospital. Death is, in fact, a normal process.
But if you are feeling uncomfortable as the time gets closer,
the advice of your doctor or nurse may be helpful.
In addition to loss of appetite
and loss of awareness, the person who is dying may experience
other symptoms of the body closing down its systems. For instance,
as the circulation gets weaker, they may develop spots or
streaks of blue or purple, and their fingernails, lips, and
toenails may become blue or gray. This is a sign that death
is approaching. If the knees are pink or red and the hands
and feet are warm to the touch, the death will probably not
occur for several days.
Toward the end, although the
hands and feet might feel cold, the body’s internal thermostat
may start to break down. The patient may feel hot inside and
sweat profusely. Such temperature fluctuations are normal,
and the goal is simply to do what you can to make the person
comfortable. If the patient seems especially restless, try
removing some layers of clothing or blankets. It may be that
the covers are too warm.
Depending on the illness, there
may be a strong odor. The patient may or may not be able to
smell it, but it can be distressing to family members. Do
what you can to be sure the patient is kept clean, but also
open windows when possible and consider putting flowers or
other nice smelling fragrances in the room.
Sometimes in the last week or
so the patient may experience involuntary movements of the
arms and trunk. He or she may or may not be aware of these
movements. For instance, it is not uncommon for people near
the end to be lying down but reach out, as if to be embraced
or lifted up. Although disconcerting to witness, this does
not appear to be uncomfortable or distressing to the patient.
Many patients are not even aware that they are doing this.
Some patients may experience mild seizures toward the end.
If so, there are medicines that can be given to reduce the
frequency or intensity of the spasms.
The person you are caring for
may call out now and then. It can be difficult to know whether
or not these noises are related to pain. They can just be
involuntary vocalizations. If you know your loved one has
a tender area, you may want to touch it. If he or she calls
out in the same manner, then the vocalizing may be a reflection
of pain and you might want to increase pain
medications. If there is a particular spot that is
especially painful, applying a heating pad, hot water bottle
or microwavable pillow can alleviate the pain/tension cycle.
(Be sure you buffer the source of the heat with a layer of
cloth as direct contact with the skin can cause a burn.)
The most common discomforts
in the last few days are parched lips and delicate skin. Olive
oil, vaseline or lip balm can do much to relieve dry chapped
lips, as can swabbing the mouth with sponge "toothettes."
Some people like sucking on ice chips or a wet washcloth to
relieve the discomfort of a dry mouth. Delicate skin conditions
can be remedied with lotions and having the person change
position every two hours. You will find more detail concerning
personal care in our article on caregiving
tips. (Return to list)
Being with a dying family member
People in the last few days
often drift in and out of consciousness. You and the person
who is dying may or may not be able to talk much during this
time. As a general rule, you will want to keep conversations
short. If there are unresolved conflicts, this is not the
time to process through who said what when. People at the
edge of life have very little energy. However, they are often
moved to express love and forgiveness, and to receive love
and forgiveness. It can be very healing to simply let the
dying person know how much you care, how much they meant to
you, and the ways they contributed positively to your life.
Other suitable activities include reading to the patient,
praying, singing, quietly holding hands, or listening to music.
Sacred Heart Medical Center has a comforting service called
"Strings
of Compassion" by which a harpist can come and
play for the patient and family.
Some family members feel strongly
about being present at the time of death. Indeed, many people
who die speak in the weeks before of being afraid of dying
alone. At the same time, it can be difficult to "let
go" when all of your family is present. Some people seem
to almost choose when they go and in fact "wait"
until their close family members are gone from the premises
before they die. In the last few days, it seems to help the
person who is dying to be given assurances that the survivors
will manage without them and that it’s all right to let
go. (Return to list)
The moment of death
Unlike the movies, the actual
moment of death is often vague and even anti-climactic. As
mentioned before, there is a tendency for the breathing to
become spread out and irregular. Sometimes there is a shudder
or a brief sigh at the last breath, but often the last breath
is as uneventful as the ones before it; there simply isn’t
a breath afterward. Lack of breathing and lack of pulse (heartbeat)
are the sure signs that a person has died. Often the muscles
in the jaw relax and the mouth will open slightly. The eyes,
too, may open and stay that way. Sometimes there is a bit
of fluid that comes out of the mouth, and for some, the bladder
and bowels may release at the time of death.
If you think your loved one
has died, check the breathing and heart rate. Actually pronouncing
the death can help the survivors present in the room to make
closure and move on to the next phase of the vigil. (Return
to list)
What to do immediately after
a person dies
Many people think they need
to call someone official right away. In fact, all you need
to do is note the general time of death. There is no reason
to rush calling the doctor or the mortician, unless that is
your preference. You may find that you and the others present
want to spend some quiet, reflective time with the body, together
or separately. Be gentle with yourselves and move slowly.
You will have witnessed a profound event and you are likely
to be quite open and emotionally vulnerable. Give yourselves
time to process what you have been through and to say your
good-byes.
If you are planning to bathe
and dress the body yourself, you will probably want to do
this within the first hour, before it starts to stiffen.
If the eyes are open and you would prefer them to be closed,
you will want to close them fairly soon after death. You
may also
want to roll up a towel and place it under the
chin if you prefer
that the mouth remain closed.
Once you make phone calls and
get the outside world involved, you begin to limit the time
you will have left with your loved one. You may wish to contact
close friends and relatives and tell them of the death. They
might also appreciate some time with the body before it is
taken away. Rest assured that the morticians can come many
hours after the death. The body will not decompose that quickly.
When the morticians do arrive,
there will usually be two of them. They will need to ask a
few questions and then spend some time preparing your loved
one’s body for transport. They are usually sensitive
to the situation and understand that this is a very difficult
time. They will bring in a gurney with a big leather bag and
will eventually need to put your loved one’s body into
the bag, wheel it out on the gurney to their vehicle and take
it to the mortuary. It is advisable to have said your good-byes
before they move the body, rather than at the door, as many
family members find it traumatic to witness their loved one
leaving in this manner.
After your loved one’s
body has been taken away, you may well feel a bit numb or
empty. It is not uncommon to feel distant or removed from
the situation. Sometimes it helps to talk with others, but
you may feel more like spending some quiet reflective time
alone. Many people have a mixture of feelings, including grief,
anger, relief and guilt. All of them are quite normal.
Often people feel pressure to
get on the phone immediately and start letting others in the
family know about the passing. If you don’t feel up to
this task, it’s fine to let it wait, or to ask someone
else who is a little less impacted by the death to make the
calls. While it may not seem like it at the moment, there
is actually plenty of time to get done what needs to get done.
Honor your impulses and allow yourself to process your loved
one’s passing in the way that feels most comfortable
to you. (Return to list)
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