COPING WITH LOSS, DEATH AND GRIEVING

LOSS
INTRODUCTION
Loss is a part of life cycle. All people experience in the form of
change, growth and transition. Our loss begins at birth (having to leave
the warmth & security of the womb) and end with the ultimate loss,
the death of self. The experience of loss is painful, frightening and
lonely and it triggers an array of emotional response. People may
vacillate between denial, shock, disbelief, anger, inertia, intense
yearning, loneliness, sadness loss of control, depression and spiritual
despair.
In addition to normal losses associated with lifecycle stages there
are potential losses of health, a body part, self image, self esteem and
even ones life. When there are physical health problems such as
diabetes, AIDS, cardiac conditions, GI disorders, disabilities and
neurological impairments tend to respond to these illness with a grief.

DEFINITION OF LOSS
Loss can be defined as the undesired change or removal of a valued
object, person or situation

TYPES OF LOSSES
Necessary losses
It is an integral part of each persons life. Necessary losses
are something natural and positive .E g: growing up process. We
develop independence from our parents, start and leave school,
change friends, begin career and form relationships. These losses
are replaced by something different and better.
Actual losses
The loss of any person or object that can no longer be felt,
heard, known or experienced by the individual. E g: loss of a body
part, child relationship, or role at work.
Perceived losses
Any loss that is uniquely defined by the grieving client, may
be less obvious to others. They are easily over looked and
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misunderstood, yet the progress of grief follows the same

sequencing and progression as actual losses. E g :loss of confidence
or prestige.
Maturational losses
Any change in the development process that is normally
expected during a life time. It is a part of normal life transition, but
feels help a person to cope with the change.
Situational losses
It includes any sudden unpredictable external events. Often
this type of loss includes multiple losses rather than a single loss
such as automobile accident that leaves a driver paralysed, unable
to return to work and grieving over the loss of a passenger in the
accident
Loss of external objects
Extend of grieving depends on objects value, sentiment
attached to it and its usefulness .E g: loss ,misplacement,
deterioration, destruction by natural causes
Loss of known environment
Loneliness or new unfamiliar environment threatens self
esteem and makes grieving difficult. E g: moving from a
neighborhood, hospitalization, a new job etc.
Loss of significant others
Loss of a family member, friend, trusted nurse or animal
companion.
Loss of life
Loss of life creates grief for those left behind. Person facing
death often fears pain, loss of control, and dependency on others. E
g: death of a family member, friend or own death.

GRIEF
Grief is the physical ,psychological & spiritual response to loss. It is
manifested in a variety of ways that are unique to an individual and
based on personal experiences, cultural expectations and spiritual
beliefs. Mourning is the psychological process through which the
individual passes on to successful adaptation to the loss of a valued
object. Bereavement includes grief and mourning-the inner feeling and
outward reactions of the survivor. The time of grieving depends on the
significance of the loss, the length of time the person was known and
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loved, the anticipation of or preparation for the loss, the persons

emotional stability and coping ability. Some people resort to abuse of
prescription medications, illegal drugs or alcohol if they find it difficult
to cope with the loss, the grief process is then complicated by the use
of addictive substances.

TYPES OF GRIEF

Normal grief

It consists of normal feelings, behaviors and reaction to loss.

This normal grief response to a loss can prove, helping one to mature
and develop as a person. It includes resentment, sorrow, anger, crying,
loneliness and temporary with drawl from activities.

Anticipatory grief

The process of disengaging or letting go that occurs before an

actual loss of death has occurred .E g: once a family receives a
terminal diagnosis, they begin the process of saying good bye and
completing the life affairs. When the actual process of dyeing is
extended for a long time, persons in the client family may have few
syndromes of grief once death occurs.

Complicated grief

When the person has difficulty in progressing through the

normal process of grieving, bereavement become complicated. In
these cases bereavement appears to go wrong and loss never resolves.
This can threaten the persons relationship with others. Complicated
grief includes
a)chronic grief-begins as normal grief but continues long term, with
little resolution of feelings and inability to rejoin normal life
b)delayed grief- a grief that is put of until a later time
c)exaggerated grief
d)masked grief-occurs when the person is grieving but expressing the
grief through other types of behaviors. e g: a man whose wife has died
may begin drinking heavily

Disenfranchised grief

Person experiences grief when a loss is experienced and cannot

be openly acknowledged, socially sanctioned or publicly shared. E g:
loss of partner from AIDS, child experiencing death of step parent

FACTORS INFLUENCING LOSS AND GRIEF

Human development
Person of differing ages and stages of development will display
different and unique symptoms of grief. E g: toddlers are unable to
understand loss or death, but they will feel great anxiety over loss of
objects and separation from parents
Psychological perspectives of loss and grief
Age, gender, status, race, spirituality, religious beliefs, intellect,
achievement, self expression and cultural opportunity are the basis for
an individual to define and qualify the definition of life or death.
Socio economic status
It influences a persons ability to obtain options and use support
mechanisms when coping with loss. Generally an individual feel
greater burden from a loss when there is a lack of financial,
educational or occupational resources These clients require referral to
community social service agencies that can provide needed resources.
Personal relationships
When the loss involves a loved one, the quality and meaning of
relationship are critical in understanding a persons grief experience. It
is said that to lose your parents is to lose your past, to lose your
spouse is to lose your present and to lose your child is to lose your
future. When the relationship between two persons has been very
close, it will be very difficult for the one left behind to cope
Nature of loss

The ability to resolve grief depends on the meaning of the loss

and the situation surrounding the loss. The visibility of the loss
influences the support a person receives.
E g: The loss of home from a tornado will bring support from the
community, where as a private loss of an important possession may
bring less support from others
Amount of support for the bereaved
People with more emotional and psychological support
typically have less complicated grief

Culture and ethinicity

Interpretation of the loss and the expression of the grief arise
from cultural background and family practices. Critical components of
culture are their basic core belief systems that they can and often do
hold to.
Spiritual beliefs
Individuals spirituality influences their ability to cope with
loss. Clients with a strong interconnectedness with a higher power
are able to face death with relatively minimal discomfort.

STAGES OF GRIEVING
MODEL OF SUCCESSFUL GRIEVING : ENGEL(1964)
Engel (1964) was among the first to define stages of grief. Engels six
stages are:
1. Shock and disbelief.
Shock and disbelief are usually defined as refusal to accept the fact
of loss, followed by a stunned or numb response
2. Developing awareness.

Developing awareness is characterized by physical and emotional

responses such as anger, feeling empty and crying.
3. Restitution.
Restitution involves the rituals surrounding the loss with death; it
includes religious, cultural or social expressions of mourning, such as
funeral services.
4. Resolving the loss.
It involves dealing with the void left by the loss.
5. Idealization.
Idealization is the exaggeration of the good qualities that the person or
object had, followed by acceptance of the loss and a lessened need to
focus on it.
6. Outcome
Outcome the final resolution of the grief process includes dealing with
the loss as a common life occurrence.
STAGES OF GRIEVING : KUBLER ROSS (1975)

Denial
Anger
Bargaining
Depression
Acceptance

.
Denial
Denial is usually only a temporary defence for the individual.E.g.-I feel
fine, this cannot be happening, not to me
Anger
Once in the second stage, the individual recognises the denial cannot
continue. Because of anger the person is very difficult to care for due

to misplaced feelings.E.g.:why me? Its not fair, how can this

happening to me?
Bargaining
The third stage involves the hope that the individual can somehow
postpone or delay death.E.g.:I understand I will die, but if I could just
have more time....
Depression
In this stage the person begins to understand the certainty of death.
Because of this the individual may become silent, refuse visitors and
spend much of the time crying and grieving.E.g.:I miss my loved one,
why go on?

Acceptance
The final stage comes with peace and understanding of death that is
approaching. Generally, the person in this stage wants to be left alone.
This stage has also been described as the end of the dying
struggle.E.g.:I cant fight it, I may as well prepare for itThese stages
are not necessarily sequential stages. People can move from one stage
to another and then back again or skip a stage as they attempt to deal
with the loss.

MARTOCCHIOS STAGES OF GRIEVING

Martocchio presented five cluster of grief to include
1. Shock and disbelief.
2. Yearning and protest.
3. Anguish, disorganization and despair.
4. Identification of bereavement-Bereavement is an individual
emotional response to the loss of a significant person.
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RANDOS STAGES OF GRIEF

1. Avoidance
2. Confrontation
3. Accommodation
Avoidance-includes responses such as shock, deniel, anger &
bargaining.
Confrontation-the phase during which the person actually faces
the loss. It is a very emotional & upsetting time. This is when the
person feels the grief most acutely
Accommodation-the person begins to live with the loss, feel
better & resume some routine activities
Randos stages are known as the six Rs of grieving. They are
Recognising the loss(awareness)
Reacting to the separation(feel the emotions)
Recollecting memories of the deceased(remembering,
relieving)
Relinguishing the old attachments(new ways of living
without the deceased)
Readjusting to the new environment(new coping skills)
Reinvesting self(energy once turned inward on grief to be
focussed outward)
STAGES OF BEREAVEMENT: BOWLBY(1961)
Protest
Disorganization
Reorganization
PATTERNS OF LIVING WHILE DYEING : MARTOCCHIO(1982)
1. Peak and valleys or periods of hope and depression: Despite
hopeful times there is still an overall movement toward decline
and death
2. Descending plateaus: This describes a downward trend with
progressive debilitation and eventually death

3. Downward slope with physiological parameters indicating that

death is imminent. Often observed in critical care units where
people and families have no time to prepare for death
4. Last pattern is a downward slant that reveals a crisis event, such
as severe cerebral hemorrhage with almost no hope of recovery.
Often the patient in this pattern is being maintained on life
support systems
WILLIAM WORDENS THEORY
His theory describes the tasks a grieving person must achieve.
These includes the following:
1. Realizing that loved one is gone: in the hours & days after a
significant loss, the grieving person typically feels numb and
unable to accept the fact of the loss. This numbness is thought to
be an helpful form of denial. So the task of realizing that loved
one or object is gone may take several days, in case of sudden
death it takes several weeks to achieve.
2. Experiencing the pain: once the grieving person has accepted
the reality of the loss, the feeling and emotions that surface are
intense and can change rapidly. This makes the person feel out
of control. People in this stage may say that they feel as if they
are going crazy. This is the longest phase of grieving
3. Adjusting to the environment without the deceased: this means
performing activities alone ,such as going for walk or shopping,
that were once shared or taking on roles and responsibilities that
the deceased previously held. Once the person has established
the new pattern he feels satisfaction and increased self esteem
4. Adjusting to the environment without the deceased: initially all
energy is focused on the deceased: thinking about the person,
talking about her, reliving memories and so on. Concentration is
difficult, so the grieving person finds it hard to engage in
activities such as reading. When the persons energy begins to
flow toward others or to different or former interest, the healing
process is in progress.

DEATH AND DYING

9

Death is the ultimate loss.The dyeing person ultimatelyfaces

the loss of physical control and function, independence, relationships,
possibilities and ultimately life itself.

DEFINITION
In 1981, the Presidents commission for the study of
Ethical Problems in medicine and Behavioural and Biomedical research
defined death as present when an individual has sustained either
irreversible cessation of circulatory and respiratory functions, or
irreversible cessation of all functions of the entire brain, including brain
stem.
Dying may occur suddenly as a result of an accident
,injury or pathologic crisis such as a heart attack or it may occur after
a prolonged experience of a debilitating disease such as cancer, AIDS
or multiple sclerosis. Dying is a process rather than an event which,
once begun, will lead to the death of every cell in the body. Some cells
can live much longer than others without oxygen or nutrients. For
example brain cells begin to die after a matter of a few minutes
whereas cells in the eye and skin can survive for 24 hours or more
after the heart has stopped. Because dying is a process, it is necessary
to identify when the process reaches the point of death and a living
human being can no longer exist. Death therefore is not when every
cell in the body has died but when an individual suffers an irreversible
loss of the capacity to be conscious combined with the irreversible loss
of the capacity to breathe. This occurs when vital centres in the brain
stem, or base of the brain, are damaged beyond repair. Such damage
can occur when the brain itself is injured, such as in an accident, or
can occur indirectly by starving the brain of oxygen, such as when the

10

heart stops beating.

STANDARDS OF DEATH DETERMINATION

(a) A person is dead when, according to ordinary standards of medical
practice, there is irreversible cessation of the persons spontaneous
respiratory and circulatory functions. (Patient is pulse less, apnoeic and
unresponsive to verbal stimuli for a period of at least 2 5 minutes).
(b) If artificial means of support preclude a determination that a
person's spontaneous respiratory and circulatory functions have
ceased, the person is dead when, in the announced opinion of a
physician, according to ordinary standards of medical practice, there is
irreversible cessation of all spontaneous brain function. Death occurs
when the relevant functions cease.

NEEDS OF THE DYING PATIENT

Dying persons bill of rights
From American Journal of nursing, 75(1)99
I have the right to be to be treated as a living human being until i
die.
I have the right to maintain a sense of hopefulness, however
changing its focus may be.
I have the right to be cared for by those who can maintain a
sense of hopefulness, however changing this may be.
I have the right to express my feelings and emotions and my
approaching death in my own way.
I have the right to participate in decisions concerning my care.
I have the right to expect continuing medical and nursing
attention.
I have the right not to die alone.
I have the right to be free from pain.
I have the right to have my questions answered honestly.
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 I have the right not to be deceived.

I have the right to have help from and for my family in accepting
my death.
I have the right to die in peace and dignity.
I have the right to retain my individuality and not be judged by
my decisions, which may be contrary to the beliefs of others.
I have the right to discuss and enlarge my religious or spiritual
experiences, regardless of what they mean to others.
I have the right to expect that the sanctity of the human body
will be respected after death.
I have the right to be cared

for

by

caring,

sensitive,

knowledgeable people who will attempt to understand my needs

and will be able to gain some satisfaction in helping face my
death.

CLINICAL MANIFESTATIONS AT THE END OF LIFE

Death occurs when all vital organs and systems cease to function. As
death approaches, metabolism is reduced and the body gradually
slows down until all function ends. Generally respiration ceases first,
and then heart stops beating within a few minutes. The manifestation
in detail includes physical and psychological manifestations.
PHYSICAL MANIFESTATIONS
SENSORY SYSTEM
Hearing - usually last sense to disappear
Touch

- decreased sensation
- decreased perception of touch and pain

Taste

- decreased with disease progress.

Smell

- decreased with disease progress.

Sight

-blurring of vision
-blink reflex absent
-eyelids remain half open

INTEGUMENTARY SYSTEM
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-Cold clammy skin

-cyanoses on nose, nail beds
-wax like skin when very near to death.
RESPIRATORY SYSTEM
-Increased respiratory rate
-cheyne stroke respiration (alternating periods of apnoea, deep
and rapid breathing)
-irregular breathing gradually slowing down to terminal gasps
(guppy breathing)
-noisy wet sounding (death rattle)
URINARY SYSTEM
-Gradual decrease in urinary output
-urinary incontinence or unable to urinate
GASTROINTESTINAL SYSTEM
-Accumulation of gas
-distension and nausea
-loss of sphincter control
-possible cessation of GI function
-bowel movement may occur before imminent death or at the
time of death.
MUSCULOSKELETAL SYSTEM
-Gradual loss of ability to move
-loss of gag reflex
-sagging of jaw results in loss of facial muscle tone, dysphagia,
difficulty in speaking
CADIOVASCULAR SYSTEM
-Increased heart rate: later slowing
-irregular rhythms
-decreased blood pressure
-weakening of pulse
PSYCHOSOCIAL MANIFESTATIONS
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A variety of feelings and emotions affect the dying patients at the end
of life care. They are

Altered decision making

Fear of loneliness
fear of pain
Helplessness
Restlessness
Anxiety
Impending doom
Vision like experiences
Grief

ASPECTS OF END OF LIFE CARE

The important aspects of end of life care involves
i.
ii.
iii.
iv.
v.
vi.

Palliative care
Preparation at the end of life care
Advanced directives
Understanding CPR and DNR
Care during the final days
Hospice care

1. PALLIATIVE CARE
DEFINITION
The palliative care means taking care of the whole personbody, mind and spirit, heart and soul. Palliative care is sometimes
called hospice care. Today, doctors are able to cure many people
diagnosed with cancer. If a cure is not possible, some people receive
treatment to manage the symptoms and side effects of cancer and its
treatment. This type of treatment is called palliative care.
PURPOSES
Treating pain and all other physical symptoms caused by disease
and its treatments.
Addressing a persons spiritual needs and concerns.
Addressing and treating a persons psychosocial needs such as
coping with changes in body image and depression.

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 Providing support for the patients family, friends and care

givers.

PRINCIPLES OF PALLIATIVE CARE

I.

palliative care respects the goals, likes, and choices of the dying
person and his or her loved ones...helping them to understand
the illness and what can be expected from it, and to figure out

II.

what is most important during the time.

Palliative care looks after the medical, emotional, social and
spiritual needs of the dying person with a focus on making sure
he or she is comfortable, not left alone, and able to look back on

III.

his or her life and find peace.

Palliative care supports the need of family members, helping
them with the responsibilities of care giving and even supporting

IV.

them as they grieve.

Palliative care helps to gain access to needed health care
providers and appropriate care settings involving various kinds of
trained providers in different settings, tailored to the needs of the

V.

patient and his or her family.

Palliative care builds a way to provide excellent care at the end
of life through education of care providers, appropriate health
policies, and adequate funding from insures and the government.

THE PALLIATIVE CARE TEAM

Several health care professionals may participate as part of a team to
give palliative care. The team members includes,
DOCTOR: The doctor serves as the health care team leader,
makes treatment plans and decides on medication and dosing
and may consult with other doctors, such as pain specialist or a
radiation oncologist.

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 NURSES: The nurse gives direct care to the patient and helps
with managing plan and other side effects of cancer and its
treatment. The nurse also acts as a laison with the rest of the
health care team members. For people in home hospice
programme, nurses visit them at home several times a week and
sometimes more than once a day.
SOCIAL WORKER: A social worker may help with financial issues;
arrange family meetings and helps with discharge from home or
hospice care.
SPIRITUAL ADVISORS: A chaplain or other spiritual advisors
counsel the patient and family members on religious and
spiritual matters.
DIETITIAN: A dietician helps the patient and family members to
plan healthy meals and addresses nutritional concerns.
PHYSIOTHERAPIST: A physiotherapist helps the patient

to

maintain movement and helps when the patient has difficulty in

moving around, and also addresses social concerns at home.
GRIEF AND BEREAVEMENT CO.ORDINATOR: This professional
counsels the patient and family members and help with planning
and memorial services.
PALLIATIVE CARE SETTINGS
As the needs of every family and family member vary, and as
different care settings present. palliative care is provided in home and
hospital also.
In the hospital settings
Despite the economic and human costs associated with death
in the hospital settings, as many as 50%of all deaths occur in the acute
care settings. It is clear that many patients will continue to opt for
hospital care or default will find themselves in hospital settings at the
end of life care. Increasingly, hospitals are conducting system wide
assessments of end of life care practices and outcomes and are
developing innovative models for delivering high quality, person
16

centred care to the patients approaching the end of life. Hospitals cite
considerable financial barriers to providing high quality palliative care
in acute care settings. Public policy changes have been called for that
would provide reimbursement to hospitals for care delivered via
designated hospital wide palliative care beds, clustered palliative care
units or palliative care consultation services in acute care settings.
In the home care settings
Where ever the patient may ultimately die, they are likely to
spend most of their last year of life in their own home being cared for
by close family members. When the patient and the familys hopes are
focussed on allowing the patient to die in his or her own home ,the
nurses need to be acutely sensitive to the shifting needs of the caring
family. Support from palliative care clinical nurse specialists such as
Macmillan nurses and/or accessing the Marie curie nursing service to
provide extended periods of care in the home, often overnight ,can
provide crucial support to the family, perhaps avoiding late crisis
admission to hospital due to care giver strain. For people in home
hospice programme, nurses visit them at home several times a week
and sometimes more than once a day.
PALLIATIVE SEDATION AT THE END OF LIFE
Although palliative sedation remains controversial, it is
offered in some settings to patients who are close to death or who
have symptoms that do not respond to conventional pharmacologic or
non pharmacological approaches. The palliative sedation to relieve
symptoms, not to hasten death it is most commonly used when the
patient exhibits intractable pain, dyspnoea, seizures or delirium. Before
implementing palliative sedation, the health care team should asses
for the presence of underlying and treatable causes of suffering such

17

as depression or spiritual pain. Finally the patient and family should be

fully informed about the use of this treatment.
Eg: Infusion of benzodiazepine or barbiturates in doses adequate to
induce sleep and eliminate signs of discomfort.
Once sedation has been induced, the nurse should continue
to comfort to the patient, monitor the physiological effect of the
sedation, support the family are and ensure the communication within
the health team and between the team and the family.
2. PREPARATION AT THE END OF LIFE CARE
Despite the doctors best efforts and hard work, disease
treatment sometimes stops working and a cure or longer term
remission is no longer possible. This stage of illness is called advanced,
terminal or end stage. This stage includes,
GRIEVING YOUR LOSSES

Learning that persons illness has become terminal can bring

about intense feelings of anger, fear grief, regret and other

strong emotions.
Talking about feelings and concerns with family, friends and

caregivers can help bring you comfort.

It is normal to grieve and mourn the loss of your abilities, the
loved ones you will leave behind, and the days you will not have.

GETTING AFFAIRS IN ORDER

Setting your affairs include locating and organizing important

legal and financial documents, such as will, marriage and birth
certificates,

social

security

card,

insurance

policies,

bank

statements and investment summaries.

Some people also find it helpful to plan some aspects of their
own funeral. This can be done with set of written instructions or
talking to family or close friends about your wishes.
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As we approach the end of your life there may be certain things

you wish to accomplish in the time you have left. These tasks
can help to bring a sense of meaning and completion to your life,
and may range from fulfilling a lifelong dream to more simple
experiences such as rereading a favourite book or spending time
with those who are important to you.

REVIEWING YOUR LIFE

It is only natural to want to leave a legacy; evidence that your

life mattered and that you made a difference in the world.

Take time to reflect on and celebrate the events in your life-the
things you have accomplished, the people you have loved, the

individuals and events that have shaped you.

Talking about or recording your wishes and dreams for loved
ones in the future can help ease regrets about having to leave
them, and help them feel connected to you at important times
throughout their lives.

RELIGION AND SIRITUALITY

The spirituality is a key component of comprehensive nursing
for terminally ill patients and their families. Include counselling to
patient and family members. Spiritual needs do not necessarily equate
to religion. A person may be of no particular faith but have a deep
spirituality. Some patients may choose to pursue a spiritual path some
may not. So their individual needs to be respected. The patients and
familys preferences related to spiritual guidance or pastoral care
services should be noted.
Eg: Giving anointment.
For some, organised religion is a central part of life and the
support of faith and clergy members are an important source of
comfort at the end of life. For others, spiritual comfort may lie in a

19

sense of connection to nature or people. What matters is finding such

comfort, completion, peace which will sustain hope and meaning.
4. ADVANCED DIRECTIVES
In 1991 the Omnibus reconciliation act of1990 became
effective. It is frequently known as the Patient self determination act.
This act requires all institutions that participate in Medicare to provide
written information to patients concerning their right to accept or
refuse treatment. This information should include the right to initiate
advance directives. Advance directives are the legal documents that
explain the kind of medical treatment would want and would not want
if you become unable to make these decisions for yourself. Advance
directives protect clients rights and preferences for the medical
treatment and diminish the burden of family members and the other
caregivers making decision for client. It protect the rights and
preferences for the medical treatment by writing down the clients
wishes in an advance directive and having a witness or witnesses sign
the statement.
TYPES OF ADVANCE DIRECTIVES
The most common type s of advance directives are the the
living will and the
durable power of attorney for health care.
LIVING WILL
A type of advance directive in which the individual documents
treatment preferences. It provides instructions for care in the event
that the signer is terminally ill and not able to communicate his/her
wishes directly and often is accompanied by a durable power of
attorney for health care. This is also known as a medical directive or
20

treatment directive or directive to physicians and family. A living will

can include the statements about
Whether client want the medical team to use cardiopulmonary
resuscitation(CPR)

and

or

artificial

life

support

such

as

mechanical ventilator, if breathing or heart stops.

Whether you want to receive a feeding tube, if you cannot be fed
otherwise?
Whether client want certain procedures such as dialysis.
DURABLE POWER OF ATTORNEY FOR HEA LTH CARE
It is a legal document through which the signer appoints and
authorizes another individual to make decisions on his or her behalf
when he/she is no longer able to speak for him/herself. The persons
appoint is often referred to as heath care proxy, agent or attorney infact and has authority only over medical decisions, not other matters
such as finances. This is also known as a health care power of attorney
or a proxy directive. Any competent adult, age more than18yrs or older
can be a health care agent. Once you choose a health care agent you
can still make your own decisions about your medical care: your health
care agent will only make decisions once you are unable to do so.
Once you make an advance directive, you can change it if needed.
Changes can made as long as you still have or regain your ability to
make decisions and should notify health care team if any changes
made.
4. UNDERSTANDING CPR AND DNR
CPR is a combination of chest compressions and rescue
breathing that is given to a person in cardiac arrest. When a person
goes to cardiac arrest, the heart stops pumping blood through
body.CPR can temporarily help a small amount of blood flow to the
heart and brain until the heart begins beating again.CPR may include
the following:
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Manual chest compression.

Defibrillation
Giving drugs to stimulate the heart
Mouth to mouth breathing
Insertion of an artificial airway
A DNR order is a type of advance directive and it is the

written physicians order instructing health care providers not to

attempt CPR and it is often requested by patient and family. A no code
or DNR order allows the person to die with comfort measures only and
without the interference of the technology. A new term being used to
replace no code or DNR is the term allowed natural death (AND).this
term more accurately conveys what actually happens. It is also
sometimes referred to as comfort code status, meaning that all
comfort

measures

associated

with

pain

control

and

symptom

management are carried out. However, the natural physiological

progression to death is not delayed or interrupted. Unlike other
advance directives that are written and signed by the individual, a DNR
order must be completed and signed by doctor or other health care
provider, such as hospice nurse practioner. Once completed it should
be added to the medical record.
Ideally, decisions about end of life care should be made early
in the care process before there is a need for them. If wait until a crisis
occurs, it may be too late for communicate your wishes about a DNR
order or other advance directives. However, many physicians are
reluctant to write these orders, especially when this issue is a source of
conflict between the patient and family or between individual family
members.
5. CARE DURING FINAL DAYS
If treatment is no longer able to slow or halt the growth of
the disease, the disease develops what is known as advanced or end
22

stage. Treatment for end stage focuses on keeping the person

comfortable and free of pain as he or she approaches the end of life.
Even if a cure or long term remission is no longer possible, the person
still has the choices for care. Some people decide to stop active
treatments (e.g.: chemotherapy),other people may receive additional
medical treatments and to continue both palliative and active care and
many of them decide to enter hospice care. Care during final days
include,
Providing comfort
Comfort measures during the end of life includes,
Use foam cushions to make beds and chairs more comfortable
and help the patient to change positions frequently and
change the bed linens as necessary.
Elevate the patients head or turn the patient on his or her
side to help make breathing easier.
Use blankets to help keep the person warm & gently rub the
persons hand, feet or soak the hands and feet in warm water.
A gentle massage can be comforting and can help with blood
circulation and dry skin. Use a lotion without alcohol, which
tends to further dry skin.
Offer sips of liquid through a straw or from a spoon to help to
keep the mouth moist. Glycerine swabs and lip balm also help
with dry mouth and lips.
Controlling pain
Controlling pain is an important part of dying comfortably and
peacefully.
Administer medications around the clock in a timely manner and
on a regular basis to provide constant relief rather than waiting
until the pain is unbearable.
Concentrated morphine solution can be very effective by
delivered by the sublingual route.
23

 In case of uncontrolled pain, palliative sedation.

Respecting final wishes
The nurse needs to be aware of wishes of patient and family
members. For example, some people nearing the end of life choose not
to receive artificial life support (eg; ventilators, feeding tubes etc), and
may request a DNR order. Care givers and others who care about the
person may not always agree with the decisions outlined in an advance
directive. However, having a patients final wishes respected and
followed is an important need for people with an advanced illness.

6. HOSPICE CARE
Hospice is not a place but a concept of care that provides
compassion, concern, and support for dying. Hospice and palliative
care are frequently used interchangeably. Hospice exists to provide
support and care for person in the last phases of the incurable diseases
so that they might live as fully and as comfortable as possible. Hospice
care programmes provide multidisciplinary care at the end of life with
emphasis on symptom management, advance care planning, spiritual
care, family support, including bereavement.
Hospice care is generally provided in the home, with
inpatient care reserved for acute pain management or respite care for
families or care givers in need of a break. Home care is provided on a
part time, intermittent, on call, regularly scheduled or continuous basis
.Hospice care services are available 24hrs a day and 7 days a week to
provide help to patients and families in their homes. The inpatient
hospice settings have been deinstitutionalised to make the atmosphere
as relaxed and homelike as possible.
Criteria for hospice care

24

Admission to a hospice care programme has two criteria

.First the patient must desire the services; second, a physician must
certify that the patient has 6 months or less to live. Hospice can help
by focussing on individuals need and goals. Hospice care allows a
person to approach the end of life with confidence, comfort, peace and
dignity.
Comparing palliative care and hospice care
Although the term palliative care and hospice care are
sometimes

used

interchangeably,

they

have

slightly

different

meanings. Palliative care applies to every steps of cancer process.

Palliative care is the frame work for hospice care. Palliative care starts
much earlier in a disease process where as hospice is traditionally is
limited to the projected last six months of life.
The hospice team
For hospice to be successful in achieving its goals, it
requires a discussion among patient, His or her care givers and a
variety of medical, nursing and other health care professionals. The
members include

A doctor who serves as the medical director of the team.

Nurses who provide direct care and case management.
Home health aides including bath aids to assist with basic needs.
Social workers.
Chaplains and pastoral care counsellors
Physical, occupational and rehabilitation therapists.
Dieticians
Trained hospice volunteers
Bereavement counsellors
Most hospice care is provided in patients own home, also care

outside the home. Also Medicare hospice benefits are also available. It
is a federal health insurance programme for people of age 65yrs and
older, some disabled people under 65yrs and people of all ages with
end stage renal diseases.
25

NURSING MANAGEMENT: END OF LIFE CARE

FOR PAIN
Pain may be a major symptom associated with terminal illness
and the one of the most feared. Pain can be acute or chronic.
Nursing Interventions
Asses the pain thoroughly and determine the quality, intensity,
location, and contributing factors.
Minimize possible irritants such as skin irritations from wetness,
heat or cold and pressure.
Administer medications around the clock in a timely manner and
on a regular basis to provide constant relief rather than waiting
until the pain is unbearable.
Provide complementary and alternative therapies such as
massage, acupressure, therapeutic touch relaxation techniques
as needed.
Evaluate the effectiveness of pain relief measures frequently to
ensure that the patient is on correct adequate drug regimen.
Do not delay or deny pain relief measures to a terminally ill
patient.

FOR DYSPHAGIA
It may occur because of extreme weakness and changes in level
of consciousness.
Nursing Interventions
Identify the least invasive alternative routes of administration for
drugs needed for symptom management.
Suction orally as needed.

FOR DEHYDRATION

26

May occur during the last days of life. As the death approaches,
patient tend to take in less food and fluid.
Nursing Interventions
Asses the condition of mucous membrane frequently to prevent
excessive dryness, which can lead to discomfort.
Maintain complete, regular oral care to provide for comfort and
hydration of the mucous membranes.
Do not force the patient to eat or drink.
Encourage the consumption of ice chips and sips of fluids or use
moist clothes to provide moisture to the mouth.
Apply lubricant to the lips and oral mucous membrane as
needed.
Reassure family that cessation of food and fluid intake is natural
part of the processes of dying.

FOR DYSPNEA
Accompanied by fear of suffocation and anxiety or underlying
disease

process

can

exacerbate

dyspnoea.

Coughing

and

expectorating secretions become difficult.

Nursing interventions
Assess respiratory status regularly.
Elevate the head and/or position on side to improve chest

expansion.
Use a fan or air conditioner to facilitate movement of cool air.
Administer supplemental oxygen as ordered.
Administer drugs as prescribed.
Suction as needed to remove accumulation o mucus from the
airways. Suctioning is used cautiously in terminal phase.

FOR WEAKNESS AND FATIGUE

It is expected at the end of life. Metabolic demands related to
disease process contribute to weakness and fatigue.

27

Nursing interventions

Assess the patients tolerance for activities.

Time nursing interventions to conserve energy.
Assist the patient to identify and complete desired activities.
Provide frequent rest periods.

FOR SKIN BREAKDOWN

Skin integrity is difficult to maintain at the end of life. Immobility,
urinary and bowel incontinence, dry skin, nutritional deficits, anaemia,
friction and shearing forces lead to a high risk for skin breakdown. As
death approach, circulation to the extremities decreases and they
become cool mottled and cyanotic.
Nursing interventions
Assess the skin for the signs of break down.
Implement protocols to prevent skin breakdown by controlling
drainage and keeping the skin and any wound areas clean.
Follow appropriate nursing management protocol for a patient
who is immobile.
Use blankets to cover for warmth; never apply heat.
Prevent the effects of shearing forces.
FOR IMPAIRED BOWEL PATTERNS
Constipation can be caused by immobility, use of opioids, lack of
fibres in the diet and dehydration. Also diarrhoea may occur as
mussels relax or from a faecal impaction related use of opioids and
immobility.
Nursing interventions

Assess bowel function.

Assess for and remove faecal impactions.
Encourage movement and physical activities as tolerated.
Encourage fibre in the diet if appropriate.
Encourage fluids if appropriate.
Use stool softeners, suppositories, laxatives or enema if ordered.

FOR URINARY INCONTINENCE

28

It may result from disease progression or changes in the level of

consciousness. As death becomes imminent, the perennial mussels
relax.
Nursing interventions
Assess urinary function.
Use absorbent pads for urinary incontinence.
Follow the appropriate nursing protocol for the consideration for
the use of indwelling or external catheters.
Follow appropriate nursing management

to

prevent

skin

irritations and breakdown from urinary incontinence.

FOR ANOREXA, NAUSEA&VOMITTING

Caused by complications of the disease process or drugs.
Constipation, impaction, bowel obstruction can also cause anorexia,
nausea and vomiting.
Nursing interventions

Asses the patient for complaints of nausea and vomiting.

Asses possible contributing factors of nausea and vomiting.
Have family members to provide patients favourite foods.
Discuss modification to the drug regimen with the doctor.
Provide antiemetic before meals if ordered.
Offer and provide frequent meals with small portions of favourite

foods.
Provide frequent mouth care, especially after vomiting.

PSYCHOSOCIAL CARE
A variety of feelings and emotions affect the dying patient and
family at the end of life. Most patients and families struggle with a
terminal diagnosis and the realization that there is no cure. Time may
be needed to process the impending death and formulate emotional

29

responses. The patient and family feel overwhelmed, fearful, powerless

and fatigued.
Nursing interventions
Asses the psychological status of the patient.
Converse as if the patient is alert, using soft voice and gentle
touch.
Encourage the family to talk with and reassure the dying person.
Encourage visit by appropriate spiritual care provider, chaplain or
family members.
Provide a room that is quiet, well lighted, and familiar to reduce
the effects of delirium, anxiety.
Reorient the dying person to the person, place, with each
encounter.
Stay physically close to the frightened patient
Reassure in a calm, soft voice with touch and slow strokes of the
skin.
Encourage family members to participate in the care of the
patient.
Take with consultant and arrange for counselling.
Dont allow the patient to be alone, keep him engaged with some
work.

LEGAL AND ETHICAL ISSUES AFFECTING END OF LIFE

CARE
Patients and families struggle with many decisions during the
terminal illness and dying experience. Many people decide that the
outcomes related to their care should be based on their own wishes.
Multiple treatment options and sophisticated life support technologies
may make it difficult to draw the line between promoting life and
needlessly prolonging the dying process. Patients have a legally and
morally protected right to consent to and refuse any and all indicated
medical therapies.
30

(1).ORGAN AND TISSUE DONATON

Persons who are legally competent may choose organ donation.
Any body part or the entire body may be donated. The decision to
donate organs or to provide anatomic gifts may be made by person
before death and family permission must be obtained at the time of
donation. Both organ and tissue donation follow specific legal
guidelines. Legal requirements and facility policies for organ or tissue
donation must be followed. The physician must be notified immediately
when organ donation is intended because some tissues must be used
within hours after death.

(2).TERMINAL WEANING
Terminal weaning is the gradual withdrawal of mechanical
ventilation from a patient with a terminal illness or an irreversible
condition with a poor diagnosis. In some cases ,a competent patients
decide that they wish their ventilator support ended; more often, the
surrogate decision makers for an incompetent patient determine that
continued ventilator support is futile. A nurses role in terminal weaning
is to participate in the decision making process by offering helpful
information about the benefits and burden of continued ventilation and
description of what to expect if terminal weaning is initiated. Support
the patients family and managing sedation and analgesia are critical
nursing responsibilities.
(3).EUTHANASIA
Euthanasia literally means good dying.It is the deliberate
ending of the life of person suffering from an incurable disease.
Euthanasia may be conducted passively, non actively, or actively.
Euthanasia may be conducted with consent (voluntary euthanasia) or
without consent (involuntary).involuntary euthanasia is conducted
31

where an individual makes a decision for other person incapable of

doing so. Passive euthanasia entails the withholding of common
treatments such as antibiotics, chemotherapy in cancer or surgery or
the distribution of medication such as morphine to relieve pain,
knowing that it may also result in death. Passive euthanasia is most
accepted form and it is a common practice. Non active euthanasia
entails the withdrawing of life support. Active euthanasia entails the
use of lethal injection or carbon monoxide that forces to kill and was
deemed both immoral and illegal. In this the clinician acts directly to
cause the death of the patient. Also in assisted suicide, the clinician
provides the means the patient used to cause her own death (e.g.
provides a prescription for a lethal dose of barbiturates).
In 1994, the American nurses association (ANA)issued position
statements stating that assisting in suicide and participating in active
euthanasia are in violation of the code for nurses , the ethical traditions
and goals of the profession and its covenant with the society.

CONCLUSION
Terminal illness and dying are extremely personal events that
affect the patient, the family and the health care providers. Providing
care for the patients and their families and the end of life is a
challenging and rewarding experience. End of life care offers an
opportunity to apply the skills and personal commitment that the
nurses bring to their profession.

REFERENCES

32

1. KOZIER, B, ETAL. (2008).DEATH AND DYING. FUNDAMENTALS OF

NURSING, PROCESS AND PRACTICES (8TH ED., PP.1090-1097)
.SINGAPOORE:PERSON PUBLISHERS.
2. POTTER,
A.,
&PERRY,
G.A.(2008).END

OF

LIFE

CARE.

FUNDAMENTALS OF NURSING (7TH ED., PP.585-587) NEWYORK:

ELSEVEIR PUBLISHERS.
3. BASHEER, S.P., &KHAN.S.Y.,(2012).A CONCISE TEXT BOOK OF
ADVANCED

PRACTICE.(1ST

NURSING

ED.PP305-

324).BANGLORE:EMMES PUBLICATIONS.
4. LEWIS, L., ET AL. (2008), END OF LIFE CARE. MEDICAL SURGICAL
NURSING (8TH ED., PP.155-163).NEWYORK: ELSEVIER PUBLISHERS.
5. BLACK, M.J. & HAWKS, H.J. (2009).PALLIATIVE CARE. MEDICAL
SURGICAL NURSING (8TH ED., PP.314-320).NEWYORK: ELSEVIER
PUBLISHERS.
6. MONAHAN, F., ET AL. (2009).END OF LIFE CARE. PHIPPS MEDICAL
SURGICAL NURSING (8TH ED., PP.157-175).NEWYORK: ELSEVIER
PUBLISHERS.
7. SMELTZER, C.S.,ET AL. (2008).TEXT BOOK OF MEDICAL SURGICAL
NURSING

(11TH

ED.,

PP.448-473),

NEW

DELHI:

LIPPINCOTT

WILLIAMS &WILKINS.
NET REFERENCES
8. http://www.en.wikipedia.org/wiki/end-of-life-care.
9. http://endoflifecare.co.uk/journal.shtml
10. http://www.nhpco.org/i4a/pages/index.cfm?pageid=5935
11. http://www.utmb.edu/policies_And_Procedures/search/pnp_00502
4
12. http://citseer.com/euthanasia

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