A Guide to Understanding

Death & Dying

A Handbook For Family & Friends

more than healthcare.

 more than healthcare

Fully-affiliated with Queen’s University and St. Lawrence College,

Providence Care is a centre for health care, education and
research, and a member of the Council of Academic Hospitals
of Ontario. Continuing the legacy of our Founders, the Sisters of
Providence of St. Vincent de Paul, Providence Care provides a
range of health care and services at Providence Care Hospital,
the Providence Manor long-term care home and community
locations across Southeastern Ontario.
 Table of contents
01 Preface .............................................................. 2

02 About Palliative Care .................................. 3

03 The Dying Process ....................................... 4

04 Principles ......................................................... 6

05 Signs Seen As Death Approaches ......... 7

The Body .......................................................... 7
The Mind ........................................................ 10
The Spirit ....................................................... 12

06 The Vigil ......................................................... 14

07 The Moment of Death ............................... 15

08 Bereavement ................................................ 17
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Preface
For many, death arrives as an unwelcome event. The physical
changes that signify the dying of a loved one may be difficult
to watch. The mental, spiritual and emotional-social adjustments
may also be overwhelming at times.
It is said that death is a journey. This handbook was developed
to provide a supportive and educational guide for families as they
face the death of a loved one. We hope it will offer information on
the dying process and be a source of support to those who are
caring for a dying person.

We hope you will find this handbook helpful.

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About Palliative Care

Palliative Care is an approach that focuses on relieving symptoms
that the dying person and their family say are troubling. This type
of “whole person” care focuses on maintaining and improving your
quality of life. At Providence Care the dying person and family are
the focus of care. Family includes anyone who is part of the inner
support circle for the dying person.
Providence Care’s Collaborative Practice Philosophy includes
interprofessional care team to best care for and support the dying
person and their family. The palliative care team works to prevent
and relieve symptoms such as pain and anxiety, and provide
support for emotional and spiritual concerns.

PALLIATIVE TEAMS MAY INCLUDE:

Physicians Dietitian
Nurses Speech Language Pathologist
Social Worker Volunteers
Physiotherapist Pharmacist
Occupational Therapist Spiritual Health Practitioner

A terminal illness can be anxious and frightening for the dying

person and their family. Team members are trained to offer help,
guidance and comfort.
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Introduction
Changes occur to the whole person as death nears. The figure
below is an example of the interpretation of the whole person: the
physical, mental, emotional-social, and spiritual dimensions. When
a person is dying, changes take place in each of these dimensions.
These changes may occur at different times and at different rates.
The dying process will be a unique experience for each person and
each family. We are here to help you along that journey.

Physical

Spiritual Mental
Physical

Emotional
- Social
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Physical changes that occur have to do with circulation,

metabolism, breathing, lung secretions, elimination and the
senses. Essentially, the body is shutting down and what may
be abnormal when a person is healthy, is normal and expected
during the dying process. For families of a dying person, this
may be one of the most important but difficult ideas to accept.

Mental activity may decrease or lose clarity and focus

during the dying process. Periods of restlessness, confusion,
increased sleepiness or unresponsiveness are among the
changes seen here.

Emotional-social changes during the dying process often

accompany the person’s necessary detachment from the
outside world and drawing inward as death nears.

Spiritual health is something we all define and interpret

differently. In this booklet, we have attempted to reflect the
view that this spiritual dimension is active all through the dying
process. Spiritual health may include, but is not limited to,
religious faith. Your views, language, beliefs and rituals will be
your guide to interpreting this dimension.
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They may be waiting for their

Principles bodies to be ready. Other
times, the body moves more
1. Death can occur suddenly or
quickly toward death, before
as a process over time. The
the person feels ready.
signs of approaching death
reflect a slowing down or 4. The dying process involves
breaking down of the body. work as the person gradually
What may be abnormal lets go. If the body can
during life becomes normal be made comfortable and
during the dying process. pain-free, the person is free
to work on matters of the
2. Death is a unique experience
heart in preparation for
for each person, coming
dying. This work may include
in its own time and way.
completing unfinished
Someone who has always
business, finding meaning
shared feelings is likely to do
in life, and reflecting on past
so during the dying process.
and present relationships
On the other hand, a person
with others.
who has been stoic, private or
independent throughout life, 5. Even though a person
is likely to approach death in is physically dying, the
this way. Keep in mind that emotional-social and spiritual
this, like all of the principles dimensions have tremendous
suggested in this booklet, impact on growth during the
varies with the individual. dying process.

3. Dying happens to the whole

person, not just the body.
The individual is affected Remember that pain and
physically, emotionally-
suffering, comfort and
socially, mentally and
healing can occur in any or
spiritually. All dimensions
all of the dimensions of a
do not always move along at
the same pace. Sometimes person, not just the body.
people say, “I’m ready to die,
but I guess it’s not that easy.”
 7

Signs Seen Purplish or blotchy red-blue

coloring on knees and/or feet
As Death (mottling) is a sign that death
is very near.
Approaches A gentle massage may be
THE BODY soothing. The dying person
is usually quite sensitive to
Circulation
pressure, therefore, there is
Hands, feet and legs usually
a need for gentleness.
get colder to the touch as
circulation slows. Change his/her position every
one and a half or two hours,
Keep the person warm with
using at least two people to
a blanket, but avoid layers
perform this function.
of heavy covers or electric
blankets. A flannel top sheet Metabolism (Body Energy)
may be comforting. The dying person will take less
Blood pressure gradually food and liquids as time goes
goes down and heart rate on. When he/she is unable to
gets faster, but weaker. swallow there is no fluid intake,
therefore there is less fluid
Colour may become waxy
accumulation and less urine
and pale and the skin takes
to be eliminated. This natural
on a drawn appearance.
process promotes more comfort
Fingers, earlobes, lips and for the person.
nail beds may look bluish or
light gray (cyanosis).
 8

Once these fluid changes occur, discomfort. This is a normal

a natural anaesthetic process part of the dying process
happens. The individual may be and there are ways to keep
drowsy or feel sedated; this is the person comfortable
a way of nature taking over to throughout this time.
help the dying person feel very Forcing food and fluids when
peaceful. a person doesn’t want them, or
Seeing the person lose interest can’t digest them properly, may
in eating and drinking is often cause nausea, vomiting, choking
difficult for the family because or other problems.
this signals the end of what If the person can swallow, ice
normally sustains life. The family chips or fluids on a small spoon
may even feel angry that the will generally satisfy thirst; be
loved one is giving up, not trying sure the head is raised to avoid
to remain alive. accidental choking.
Let the dying person lead the Swabbing the mouth with
way. Trust that the person who is cool water is another comfort
dying is following cues from his measure. Use of a spray bottle
or her own body, and is moving or atomizer can provide a fine
with the dying process. mist of water to the mouth.
Loved ones might also be Fever may or may not occur,
watchful of the person who forces but is common nearer to
himself to eat for the sake of the death.
family, but is losing the physical
Medications are often given
ability to do so safely.
to take the edge off the fever,
Dehydration (Loss Of Fluid) but they rarely eliminate it
As eating and drinking altogether at this stage. Again,
taper off, the body naturally such care is a comfort measure.
becomes dehydrated. When
Mouth and Lung Secretions
this occurs, the dying person
Because of the natural processes
becomes sleepier and may
of dehydration and increasing
be less aware of pain or
weakness to effectively cough:
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Secretions usually thicken and Changes in the rate, depth

build up in the lungs and/or and rhythm of breathing.
the back of the throat. Periods of not breathing for
Breathing may sound moist, 5-30 seconds (apnea).
congested or rattily. This A distinct pattern of breathing
may come and go, and is that is rhythmically slow and
rarely of bother to the dying shallow, then becoming faster
person closer to the time and deeper, then slowing
of death. By this point, the down again to 10-20 seconds
person is barely responsive of apnea.
and generally unaware of
Remember, these signs reflect
discomfort.
metabolic changes, not shortness-
Secretions can best be of-breath or air hunger. The dying
managed with: person is generally not aware
Medications or distressed by these changes
Turning and positioning in breathing. Although you may
the person every few hours feel short-of-breath watching,
the dying person is not likely to
Frequent mouth care
experience this as suffocation.
These measures will help to
stop pooling of the secretions
Elimination
Because the kidneys and bowels
and will allow gravity to assist
eventually stop working…
with drainage.
There is less urine and it is
Often, the rattling sound will
darker in colour.
suddenly stop on its own. Deep
suction is usually not helpful and A catheter may be placed in the
may increase the secretions or bladder as a comfort measure
make the person uncomfortable. if there is a concern about skin
breakdown or inability to empty
Breathing the bladder.
Because of circulation and
metabolic changes, there is Bowel movements become
sometimes a buildup of less frequent, but not having
bodily waste products that one for three to four days
commonly cause… could become uncomfortable.
 10

Discuss this with the palliative Sometimes the dying person’s

care nurse, because medications senses are overactive and
might be helpful. normal stimulation becomes
The dying person will very abrasive. Such things as
usually lose control of bright lights, loud or persistent
bowel and bladder function sounds or strong odors may
(incontinence) as muscles in be very upsetting. As a defense
that area begin to relax. against this physical condition,
the dying person may withdraw
It is very important to keep the
from or even push away sights,
person clean and dry of urine
sounds or people. Remember,
and stool. The use of a catheter
this is a protective way of toning
and incontinence pads will help
down the senses, and it is not
prevent skin breakdown as well
meant to personally reject a
as maintain the dying person’s
loved one. If this seems to be
dignity.
happening you may discuss it
The Senses with the care team. There are
The senses are what bind a also medications which might
person to the outside world. be soothing during this time.
During the dying process, the A comfortable environment can
senses may be overactive or be created for the dying person.
underactive. Indirect light, favourite music
Eyesight may become blurred. played softly, story-telling,
sharing memories all help to
Always assume the dying
create a comforting setting.
person can hear, even though
unable to respond. This is THE MIND
usually the last sense to be Changes in the mind can be
lost. divided into two areas: mental
Although verbal and changes and emotional-social
nonverbal communication changes.
become more limited,
Mental Changes
gentle touch is an effective
The dying process (and some
way to remain close to your
terminal illnesses) can cause
loved one.
 11

changes in mental activity and The dying person may be

consciousness. sleepy, but able to be awakened
Restlessness or agitation and have awareness of the
may be a result of diminished surroundings.
oxygen to the brain, metabolic The senses may be dulled, and
changes or physical pain. there may be little awareness
Quieting and simplifying the of what is happening in the
environment frequently helps. environment.
There are also medications that Sleep may be so deep that
help soothe the agitation or ease the dying person cannot be
the pain of the dying person. awakened and is unresponsive.
Keep in mind that the dying Always assume that the person
person’s restlessness may be hears you, and at some level
from working through emotional knows you are present.
and spiritual issues before death, Emotional-social Changes
and also due to physical changes. During the dying process,
Occasional or constant changes affecting a person’s
confusion may be related to inner feelings and interpersonal
separation from the normal relationships may take place. As
routines of living. It may also early as possible, try to address
be the result of a disease, or any emotional, social or spiritual
the dying process. issues that need attention. As
the person’s physical condition
Try to keep the person oriented
gradually weakens, discussion
to the surroundings and the
about such topics may become
people who are present. This
difficult. These may include:
will often help prevent feelings
of fear or danger in the dying Life-Review — looking back
person. Use calm, soothing at one’s life in search of
tones and short phrases when meaning and contributions.
speaking. Closure — saying good-bye
Levels of consciousness to people and places, forgiving
(being alert and aware) vary. and being forgiven, facing
regrets.
 12

Acceptance or coming to So often we are busy focusing

terms with ongoing losses on changes in the body, that we
and eventual death. might miss this very active, often
For individual reasons, the deeply hidden dimension of life.
dying person may not be It is not unusual for a dying
willing, able or feel the need to person to speak in metaphors
do these things. Take cues from and symbols about dying. In
the person and be available to Final Gifts: Understanding the
listen. Share your memories. Special Awareness, Needs and
Find ways to say good-bye, Communications of the Dying,
because this will be important authors Callanan and Keeley
for your grieving. refer to the many gifts dying
people leave their loved ones,
THE SPIRIT including the messages and
Each person’s spiritual health insights they might express in
is unique and personal. their final moments.
Each person interprets this
dimension differently, and For example, the dying person
the language and rituals may speak about death in terms
used to express it are of travel or a journey (trains,
different for each dying boats and planes). Dying people
person and family member. have been heard to suddenly call
out with urgency to “get going,
Early in the dying process, the go home, get to the door, find
person may face many issues the key, be at the station.”
which draw from his or her
spiritual dimension, such as: It is not uncommon to see a
dying person calling or reaching
The meaning of life, hope, out to a deceased family
suffering and death. member or to a religious figure.
Acceptance of ongoing losses Dying people have been heard
and eventual death. to speak of visits from or dreams
Grieving those losses. about those who have died
before them. Rather than deny
Forgiving and being forgiven.
these descriptions, or correct
 13

their reports, try to listen and after an anticipated event such

accept what is being said. This as a birthday, family member’s
can be a sacred time for those wedding, or holiday.
witnessing the final stage of life,
Likewise, for someone who has
and those making the passage.
been private or independent
When the final breath is taken, in life, death may come when
remember that the person everyone steps out of the room
dies at just the right moment, for a moment. Sometimes
whether they are alone or people die at a time that spares
surrounded by others. certain loved ones from the
actual dying event.
The authors of Final Gifts share
many examples of dying persons You may hope to be present
choosing their time to die as a at the moment of death, but
final gift to their loved ones. allow it to be a hope, not an
No one can explain why or how expectation. Hope is flexible;
a dying person may seem to expectations are rigid. Trust that
hold off or bring on the moment none of us can control when that
of death. Many of us working in final breath will be taken, but if
palliative care have seen people it is your intention to be there,
die just after a close relative that’s what matters.
arrives from out-of-town or
 14

The Vigil Though difficult, it may be important

to say to the dying person, “I don’t
As death approaches, those closest want you to go. I’ll miss you. But
to the dying person may sense that it’s all right, you can go.”
he or she is turning a corner. As Likewise, though possibly unable
this happens, family members may to speak, the dying person may
observe more signs of the body wish to say, “I love you and I don’t
shutting down, such as: want to leave, but I need to go.
Sleeping most of the time Will you be all right? May I go?” It
is comforting for the person to be
Mottling of the skin
assured of your love and presence
(purplish discoloration)
at that moment and also of your
Rattly-sounding breathing well-being after the death occurs.
Rhythmic periods of not
Families often wonder if the dying
breathing (apnea)
person hears them or is aware of
Little or no urine their presence. As death nears,
Cool, moist skin it may seem your loved one has
already left you. Perhaps the dying
As some or all of these physical
person has a more expanded
changes occur, the dying person
awareness than the physical
may seem more withdrawn from
senses can allow. Why not believe
the outer world. It is as if the
that your best intentions are
dying person is turning inward,
known by your loved one, whether
perhaps to save what little life
you’re in the room or out of town?
force is left for the final moment
of release at death. Try to reflect on how you might
keep the relationship alive without
This is what we refer to as the
the physical presence. As you walk
vigil, the time when we realize that
closer to the threshold of death,
we are not in control of the dying
remember what profound gift it
process. Death is very near. We can
is to accompany your loved one.
not answer with certainty questions
Only courage and love allow one
of “How much longer?” During this
to go this far on the journey.
vigil, we watch, we comfort, we
wait. Like birth, death comes in its
own way, at its own time.
 15

The Moment freely, let the tears flow. And there

of Death may be no tears. Remember,
everyone grieves differently.
When death is very near those
close to the person may be You may want to hug your loved
feeling many things at one time. one for a final good-bye, or
Feeling suspended in time, offer some reassurance that you
hollow, sad or anxious are some will be all right after the death
but not nearly all the feelings occurs. Honour the dying person
people describe just before the in your own special way.
moment of death. Realizing it The final moment of life may be
is almost over, you might feel a marked by nothing more than
blend of anticipation and relief. the person simply not taking
When a parent dies, you might the next breath. Breaths may
feel that you never really knew be shallow and far apart. They
the meaning of “sad” until then. may gently taper off, much
By now, many families feel, “it’s like the flickering of a candle
time for this to end,” and death flame. There may be a deep sigh
may be welcomed as the final or a dramatic sitting forward,
comfort. This is natural and rises followed by a sigh of relief.
out of love for the dying person There are medical ways to
and willingness to let him/her go. describe the final breath, but
Allow yourself to feel a range of there are also poetic ways. In
emotions. Express these feelings her book, Talk Before Sleep,
 16

Elizabeth Bert tells the story of know by waiting and watching

how a woman’s death affected for a few minutes to confirm
her family and friends. In that there are no more breaths.
describing the moment of death, A different and paler colour
one friend imagined the final comes over the skin, and facial
breath to be nothing less than expression may change.
breathtaking. You might be surprised to know
“I like to think that she looked that it is not difficult to see the
out the window one last time difference between life and
the night she died, and saw death. Again, trust in the process
with a new understanding and that you will know when the
the placement of the stars. time comes.
I like to think something Shortly after the death occurs,
incomprehensibly vast and you may wish to hug your loved
complex moved into her soul one, share prayers, silence or
at that moment, and that it, not memories with gathered family.
pathology, was what took her All of this is helpful for healthy
breath away.” grieving.
Stay beside your loved one until At some moment, you will be
you’re sure that the next breath aware that it is time to take leave
is not there. There are ways to of the body. It is time to take
confirm death, but you will care of yourself and grieve the
loss of your loved one.
 17

Bereavement
Grieving is a natural response around them. Learn about the
to loss. It touches the whole grieving process and allow
person, just as the dying yourself the physical, emotional
process does. Body, mind and spiritual support you need.
and spirit are affected. Sharing your grief with others
In order to accompany your who have experienced a similar
loved one to the end of their loss, such as in a support group,
journey, you needed information, can be helpful.
support and courage. You need Finally, take comfort in the fact
the same things now, but for that you have braved a difficult
yourself. You are facing another journey. Though unable to stop
journey now, but this time death, you have provided your
back to life. loved one with support, comfort
Many people find grieving to be and love. This indeed is a
more difficult than expected, courageous and timeless gift.
and little understood by those

You will discover ways to return to life, while still

carrying the memory of your loved one with you.
Be kind and patient with yourself. It takes time and effort.
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