Nursing Care Plan

Compromised Family Coping

Compromised Family Coping: A usually supportive primary person (family member,

significant other, or close friend) insufficient, ineffective, or compromised support,
comfort, assistance or encouragement that may be needed by the individual to manage or
master adaptive tasks related to his or her health challenge.

Risk for Caregiver Role Strain: The state in which an individual is at high risk to
experience physical, emotional, social, and/or financial burden(s) in the process of giving
care to another.

May be related to

 Inadequate or incorrect information or understanding by a primary person;

unrealistic expectations
 Temporary preoccupation by significant person who is trying to manage emotional
conflicts and personal suffering and is unable to perceive or to act effectively with
regard to patient’s needs; does not have enough resources to provide the care
needed
 Temporary family disorganization and role changes; feel that caregiving interferes
with other important roles in their lives
 Patient providing little support in turn for the primary person
 Prolonged disease/disability progression that exhausts the supportive capacity of
significant persons
 Significant person with chronically unexpressed feelings of guilt, anxiety, hostility,
despair
 Highly ambivalent family relationships; feel stress or nervousness in their
relationship with the care receiver

Possibly evidenced by

 Patient expressing/confirming a concern or complaint about SO’s response to

patient’s health problem, despair about family reactions/lack of involvement;
history of poor relationship between caregiver and care receiver
 Neglectful relationships with other family members
 Inability to complete caregiving tasks; altered caregiver health status
 SO describing preoccupation about personal reactions; displaying intolerance,
abandonment, rejection; caregiver not developmentally ready for caregiver role
 SO attempting assistive/supportive behaviors with less than satisfactory results;
withdrawing or entering into limited or temporary personal communication with
patient; displaying protective behavior disproportionate (too little or too much) to
patient’s abilities or need for autonomy
 Apprehension about future regarding care receiver’s health and the caregiver’s
ability to provide care

Desired Outcomes
  Identify resources within themselves to deal with situation.
 Visit regularly and participate positively in care of patient, within limits of abilities.
 Express more realistic understanding and expectations of patient.
 Provide opportunity for patient to deal with situation in own way.

INTERVENSI RASIONALISASI

Anxiety level needs to be dealt with before problem

Assess level of anxiety present in family solving can begin. Individuals may be so
and/or SO. preoccupied with own reactions to situation that
they are unable to respond to another’s needs.
Establish rapport and acknowledge May assist SO to accept what is happening and be
difficulty of the situation for the family. willing to share problems with staff.
Determine the level of impairment of
perceptual, cognitive, and/or physical Information about family problems will be helpful
abilities. Evaluate illness and current in determining options and developing an
behaviors that are interfering with the care appropriate plan of care.
of the patient.
Note patient’s emotional and behavioral Approaching death is most stressful when patient
responses resulting from increasing and/or family coping responses are strained,
weakness and dependency resulting in increased frustration, guilt, and anguish.
When family members know why patient is
Discuss underlying reasons for patient
behaving differently, it may help them understand
behaviors with family.
and accept or deal with unusual behaviors.
Assist family and patient to understand
When these boundaries are defined, each individual
“who owns the problem” and who is
can begin to take care of own self and stop taking
responsible for resolution. Avoid placing
care of others in inappropriate ways.
blame or guilt.
Determine current knowledge and/or Provides information on which to begin planning
perception of the situation. care and make informed decisions.
Lack of information or unrealistic perceptions can
Assess current actions of SO and how they
interfere with caregiver’s and/or care receiver’s
are received by patient.
response to illness situation.
Involve SO in information giving, problem
solving, and care of patient as feasible.
SO may be trying to be helpful, but actions are not
Instruct in medication administration
perceived as being helpful by patient. SO may be
techniques, needed treatments, and
withdrawn or can be too protective.
ascertain adeptness with required
equipment.
Information can reduce feelings of helplessness and
Include all family members as appropriate uselessness. Helping a patient or family find
in discussions. Provide and/or reinforce comfort is often more important than adhering to
information about terminal illness and/or strict routines. However, family caregivers need to
death and future family needs. feel confident with specific care activities and
equipment.
Activity Intolerance

Activity Intolerance: Insufficient physiologic or physiological energy to endure or

complete required or desired activity.

Fatigue: An overwhelming, sustained sense of exhaustion and decreased capacity for

physical and mental work at usual level.

May be related to

 Generalized weakness
 Bedrest or immobility; progressive disease state/debilitating condition
 Imbalance between oxygen supply and demand
 Cognitive deficits/emotional status, secondary to underlying disease
process/depression
 Pain, extreme stress

Possibly evidenced by

 Report of lack of energy, inability to maintain usual routines

 Verbalizes no desire and/or lack of interest in activity
 Lethargic; drowsy; decreased performance
 Disinterested in surroundings/introspection

Desired Outcomes

 Identify negative factors affecting performance and eliminate/reduce their effects

when possible.
 Adapt lifestyle to energy level.
 Verbalize understanding of potential loss of ability in relation to existing condition.
 Maintain or achieve slight increase in activity tolerance evidenced by acceptable
level of fatigue/weakness.
 Remain free of preventable discomfort and/or complications.


Nursing Interventions Rationale

Multiple factors can aggravate fatigue,
Assess sleep patterns and note changes in including sleep deprivation, emotional
thought processes behaviors. distress, side effects of medication, and
progression of disease process.
Recommend scheduling activities for periods
when patient has most energy. Adjust
Prevents overexertion, allows for some
activities as necessary, reducing intensity
activity within patient ability.
level and/or discontinuing activities as
indicated.
Encourage patient to do whatever Provides for sense of control and feeling of
 Nursing Interventions Rationale
possible: self-care, sit in chair, visit with accomplishment.
family or friends.
Instruct patient, family, and/or caregiver in
Enhances performance while conserving
energy conservation techniques. Stress
limited energy, preventing increase in level
necessity of allowing for frequent rest
of fatigue.
periods following activities.
Demonstrate proper performance of ADLs,
ambulation or position changes. Identify
Protects patient or caregiver from injury
safety issues: use of assistive devices,
during activities.
temperature of bath water, keeping travel-
ways clear of furniture.
Encourage nutritional intake and use of
Necessary to meet energy needs for activity.
supplements as appropriate.
Document cardiopulmonary response to
Can provide guidelines for participation in
activity (weakness, fatigue, dyspnea,
activities.
arrhythmias, and diaphoresis).
Monitor breath sounds. Note feelings of Hypoxemia increases sense of fatigue,
panic or air hunger. impairs ability to function.
Provide supplemental oxygen as indicated Increases oxygenation. Evaluates
and monitor response. effectiveness of therapy.

Anticipatory Grieving

Anticipatory Grieving: The state in which an individual or group experiences reactions in

response to an expected significant loss.

Death Anxiety: The state in which an individual experiences apprehension, worry, or fear
related to death or dying.

May be related to

 Anticipated loss of physiological well-being (e.g., change in body function)

 Perceived death of patient

Possibly evidenced by

 Changes in eating habits; alterations in sleep patterns, activity levels, libido, and
communication patterns
 Denial of potential loss, choked feelings, anger
 Fear of the process of dying; loss of physical and/or mental abilities
 Negative death images or unpleasant thought about any event related to death or
dying; anticipated pain related to dying
 Powerlessness over issues related to dying; total loss of control over any aspect of
one’s own death; inability to problem-solve
  Worrying about impact of one’s own death on SOs; being the cause of other’s grief
and suffering; concerns of overworking the caregiver as terminal illness
incapacitates

Desired Outcomes

 Identify and express feelings appropriately.

 Continue normal life activities, looking toward/planning for the future, one day at a
time.
 Verbalize understanding of the dying process and feelings of being supported in
grief work.
 Experience personal empowerment in spiritual strength and resources to find
meaning and purpose in grief and loss.

Desired Family Outcome:

 Verbalize understanding of the stages of grief and loss, ventilate conflicts and
feelings related to illness and death.

Nursing Interventions Rationale

Facilitate development of a trusting
relationship with patient and/or family.
Assess patient and/or SO for stage of grief
currently being experienced. Explain process
as appropriate.
Provide open, nonjudgmental environment.
Use therapeutic communication skills of
active listening, affirmation, and so on.
Encourage verbalization of thoughts and/or
concerns and accept expressions of sadness,
anger, rejection. Acknowledge normality of
these feelings.
Be aware of mood swings, hostility, and
other acting-out behavior. Set limits on
inappropriate behavior, redirect negative
thinking.
Monitor for signs of debilitating depression, recently diagnosed with end-stage disease
statements of hopelessness, desire to “end it process and/or when discharged from
now.” Ask patient direct questions about
state of mind.
Reinforce teaching regarding disease process Patient and/or SO benefit from factual
and treatments and provide information as
Trust is necessary before patient and/or
family can feel free to open personal lines of
communication with the hospice team and
address sensitive issues.
Knowledge about the grieving process
reinforces the normality of feelings and/or
reactions being experienced and can help
patient deal more effectively with them.
Promotes and encourages realistic dialogue
about feelings and concerns.
Patient may feel supported in expression of
feelings by the understanding that deep and
often conflicting emotions are normal and
experienced by others in this difficult
situation.
Indicators of ineffective coping and need for
additional interventions. Preventing
destructive actions enables patient to
maintain control and sense of self-esteem.
Patient may be especially vulnerable when
hospital. Fear of loss of control and/or
concerns about managing pain effectively
may cause patient to consider suicide.
information. Individuals may ask direct
 Nursing Interventions Rationale
requested or questions about death, and honest answers
appropriate about dying. Be honest; do not promote trust and provide reassurance that
give false hope while providing emotional correct information will be given.
support.
Opportunity to identify skills that may help
individuals cope with grief of current
Review past life experiences, role changes,
situation more effectively. Issues of sexuality
sexuality concerns, and coping skills.
remain important at this stage: feelings of
Promote an environment conducive to
masculinity or femininity, giving up role
talking about things that interest patient.
within family, ability to maintain sexual
activity (if desired).
Interpersonal conflicts and/or angry behavior
Investigate evidence of conflict; expressions may be patient’s or SO’s way of expressing
of anger; and statements of despair, guilt, or dealing with feelings of despair and/or
hopelessness, inability to grieve. spiritual distress, necessitating further
evaluation and support.
Determine way that patient and/or SO
understand and respond to death. Determine
These factors affect how each individual
cultural expectations, learned behaviors,
faces death and influences how they may
experience with death (close family members
respond and interact.
and/or friends), beliefs about life after death,
faith in Higher Power (God)
Recognizing these resources provides
Assist patient/SO to identify strengths in self
opportunity to work through feelings of
or situation and support systems.
grief.
Caregiver’s anxiety and unwillingness to
Be aware of own feelings about death.
accept reality of possibility of own death
Accept whatever methods patient/SO have
may block ability to be helpful to patient/SO,
chosen to help each other through the
necessitating enlisting the aid of others to
process.
provide needed support.
Provide open environment for discussion
If patient/SO are mutually aware of
with patient/SO (when appropriate) about
impending death, they may more easily deal
desires and/or plans pertaining to death; e.g.,
with unfinished business or desired
making will, burial arrangements, tissue
activities. Having a part in problem solving
donation, death benefits, insurance, time for
or planning can provide a sense of control
family gatherings, how to spend remaining
over anticipated events.
time.
Encourage participation in care and Allows patient to retain some control over
treatment decisions. life.
Visit frequently and provide physical contact
as appropriate or desired, or provide frequent
Helps reduce feelings of isolation and
phone support as appropriate for setting.
abandonment.
Arrange for care provider and/or support
person to stay with patient as needed.
Provide time for acceptance, final farewell, Accommodation of personal and family
and arrangements for memorial or funeral wishes helps reduce anxiety and may
 Nursing Interventions
service according to individual spiritual,
cultural, ethnic needs.
Determine spiritual needs or conflicts and
refer to appropriate team members including
clergy and/or spiritual advisor.
Refer to appropriate counselor as needed
(psychiatric clinical nurse specialist, social distress or palliate feelings of grief to
worker, psychologist, pastoral support)
Refer to visiting nurse, home health agency
as needed, or hospice team, when
appropriate.
Identify need for and appropriate timing of
antidepressants and/or anxiety medications.
Rationale
promote sense of peace.
Providing for spiritual needs, forgiveness,
prayer, devotional materials, or sacraments
as requested can relieve spiritual pain and
provide a sense of peace.
Compassion and support can help alleviate
facilitate coping and foster growth.
Provides support in meeting physical and
emotional needs of patient and/or SO, and
can supplement the care family and friends
are able to give.
May alleviate distress, enhance coping,
especially for patients not requiring
analgesics.

Pain

Acute Pain: Unpleasant sensory and emotional experience arising from actual or potential
tissue damage or described in terms of such damage; sudden or slow onset of any intensity
from mild to severe with anticipated or predictable end and a duration of <6 months.

Chronic Pain: Unpleasant sensory and emotional experience arising from actual or
potential tissue damage or described in terms of such damage (International Association
for the Study of Pain); sudden or slow onset of any intensity from mild to severe, constant
or recurring without an anticipated or predictable end and a duration of greater than 6
months.

May be related to

 Injuring agents (biological, chemical, physical, psychological)

 Chronic physical disability

Possibly evidenced by

 Verbal/coded report; preoccupation with pain

 Changes in appetite/eating, weight; sleep patterns; altered ability to continue
desired activities; fatigue
 Guarded/protective behavior; distraction behavior (pacing/repetitive activities,
reduced interaction with others)
 Facial mask; expressive behavior (restlessness, moaning, crying, irritability); self-
focusing; narrowed focus (altered time perception, impaired thought process)
 Alteration in muscle tone (varies from flaccid to rigid)
 Autonomic responses (diaphoresis, changes in BP, respiration, pulse); sympathetic
mediated responses (temperature, cold, changes of body position, hypersensitivity)
Desired Patient Outcomes

 Report pain is relieved/controlled.

 Verbalize methods that provide relief.
 Follow prescribed pharmacological regimen.
 Demonstrate use of relaxation skills and diversional activities as indicated.

Desired Family Outcomes

 Cooperate in pain management program.

Nursing Interventions Rationale

Perform a comprehensive pain evaluation,
including location, characteristics, onset,
duration, frequency, quality, severity (e.g.,
0–10 scale), and precipitating or aggravating
factors. Note cultural issues impacting
reporting and expression of pain. Determine
patient’s acceptable level of pain.
Determine possible pathophysiological
and/or psychological causes of pain
Assess patient’s perception of pain, along
with behavioral and psychological responses.
Determine patient’s attitude toward and/or
use of pain medications and locus of control
(internal and/or external).
Encourage patient and family to express
feelings or concerns about narcotic use.
Verify current and past analgesic and
narcotic drug use (including alcohol).
Assess degree of personal adjustment to
diagnosis, such as anger, irritability,
withdrawal, acceptance.
Discuss with SO(s) ways in which they can
assist patient and reduce precipitating
factors.
Identify specific signs and symptoms and
changes in pain requiring notification of
healthcare provider and medical intervention.
Involve caregivers in identifying effective
comfort measures for patient: use of non-
acidic fluids, oral swabs, lip salve, skin
Provides baseline information from which a
realistic plan can be developed, keeping in
mind that verbal/behavioral cues may have
little direct relationship to the degree of pain
perceived. Often patient does not feel the
need to be completely pain-free but is able to
be more functional when pain is at lower
level on the pain scale.
Pain is associated with many factors that
may be interactive and increase the degree of
pain experienced.
Helps identify patient’s needs and pain
control methods found to be helpful or not
helpful in the past. Individuals with external
locus of control may take little or no
responsibility for pain management.
Inaccurate information regarding drug use or
fear of addiction or oversedation may impair
pain control efforts.
May provide insight into what has or has not
worked in the past or may impact therapy
plan.
These factors are variable and often affect
the perception of pain and ability to cope and
need for pain management.
Promotes involvement in care and belief that
there are things they can do to help.
Unrelieved pain may be associated with
progression of terminal disease process, or
be associated with complications that require
medical management.
Managing troubling symptoms such as
nausea, dry mouth, dyspnea, constipation can
reduce patient’s suffering and family
 Nursing Interventions
and/or perineal care, enema. Instruct in use
of oxygen and/or suction equipment as
appropriate.
Demonstrate and encourage use of relaxation analgesic therapy, especially during periods
techniques, guided imagery, meditation.
Monitor for/discuss possibility of changes in numerous in terminal stages, early
mental status, agitation, confusion,
restlessness.
Establish pain management plan with
patient, family, and healthcare provider,
including options for management of
breakthrough pain.
Schedule and administer analgesics as
indicated to maximal dosage. Notify
physician if regimen is inadequate to meet
pain control goal.
Instruct patient, family or caregiver in use of
IV pump (PCA) for pain control.
Rationale
anxiety, improving quality of life and
allowing patient/family to focus on other
issues.
May reduce need for/can supplement
when patient desires to minimize sedative
effects of medication.
Although causes of deterioration are
recognition and management of the
psychological component is an integral part
of pain management.
Inadequate pain management remains one of
the most significant deficiencies in the care
of the dying patient. A plan developed in
advance increases patient’s level of trust that
comfort will be maintained, reducing
anxiety.
Helps maintain “acceptable” level of pain.
Modifications of drug dosage or
combinations may be required.
When patient controls dosage and
administration of medication, pain relief is
enhanced and quality of life improved.

Other Possible Nursing Care Plans

 Risk for Moral Distress—risk factors may include conflict among decision
makers, cultural conflicts, end-of-life decisions, loss of autonomy, physical
distance of decision makers

Reference : https://nurseslabs.com › 4-end-of-life-care-hospic...

Care at the Time of Death
What we have done for ourselves alone dies with us; what we have done for others and the
world remains and is immortal.

-Albert Pike

Learning Objectives

 To understand the role of the nurse during the dying process and death.
 Describe the phases and associated signs/symptoms involved in the dying process.
 Explain various nursing interventions to facilitate a good death.

Dying is a process. It involves the cessation of physical, psychological, social and spiritual
life here on earth. What happens beyond death is unknown to those reading this book.
Typically, before a person dies, there is a cascade of events that are collectively known as
the dying process. The dying process is the transition that a person goes through that
ultimately ends in death. Each person’s dying process and death is individual to that
person. Dying is an individualized experience and each person dies in their own way and
time (ELNEC, 2010). Patients who know that they are dying will usually make their
wishes known about where they want to spend their final days and hours. It is vital that the
nurse involved in that patient’s care advocate for the patient’s wishes for their end of life.

Every nurse has an obligation to facilitate their patient’s wishes regarding their care
preferences at the end of life. As nurses, we cannot with 100% certainty ensure that each of
our patient’s dying process will go smoothly without any problems. Advanced illnesses
and diseases that are terminal differ in the way they progress from person to person. An
intervention that works well for one person dying of cancer might not work for another
person. What we can do is to be armed with the best knowledge about management of
symptoms during the dying process and utilize them appropriately as needed. It is the goal
of this book that all nurses regardless of practice setting will be informed about the best
nursing care practices at the end of life. This is so we can facilitate a “good death” for our
patients, remembering that a good death means ensuring that patients’ preferences are met
and symptoms are managed through the use of open communication.

One of the most important things we can do for patients who are dying is to provide the
best possible care for them and their families during the last phase of life through death.
This is particularly important during the “imminent” phase. This is the phase that precedes
the actual death, and is also the time when the patient typically loses consciousness. The
care the nurse provides during this phase will affect the family’s memories of their loved
one’s final days and hours on earth. It is vital that the nurse performs thorough
assessments, rapid response to changes in status, rapid titration of medications, and timely
discontinuation and introduction of interventions aimed to promote comfort.

There are many characteristics associated with the dying process which nurses who care
for patients who are dying have grown accustomed to. The sights and sounds that can
occur during that time, while normal for the nurse and clinician, can be extremely
frightening and distressing for the family. One of the most important things that a nurse
can do who is caring for patients nearing the end of life is to provide care for the family
during this time and remember that although you may not remember what care you
provided, the family will remember every second that took place during that time. If there
are things that they witnessed that were distressful, that could negatively impact the
perception of their loved one’s death. If their concerns were addressed and the patient was
kept as comfortable as possible, that will positively impact the perception of their loved
one’s death.

Phases of Dying

Actively dying

According to ELNEC (2010), there are two typical roads to death that can occur during the
actively dying process: the usual road or the difficult road. The usual road is the best we
can hope for when caring for persons at the end of life. It begins with sedation and lethargy
and progresses to a comatose state and then death. The difficult road includes restlessness
and confusion that often progresses to unpleasant hallucinations and delirium. Myoclonus
and seizures can also accompany the difficult road.

Physical signs and symptoms associated with both roads can accompany the patient
months, weeks, days or hours before death and vary from person to person. Refer to Figure
9.1 for a list of physical signs that the actively dying patient commonly exhibits.

Figure 9.1 Signs and Symptoms during Active Dying

Pain

Dyspnea

Fatigue

Cough

Bowel Changes (Constipation/Diarrhea)

Incontinence

Anorexia/Cachexia

Nausea & Vomiting

Depression/Anxiety

Seizures
Depending on the patient’s goals for care, various treatments are available to manage these
conditions. Refer to Chapter 6 for a description of the best interventions used to manage
the signs and symptoms patients are afflicted with during the end of life. The role of the
nurse during the active dying phase is to support the patient and family by educating them
on what they might expect to happen during this time, addressing their questions and
concerns honestly, being an active listener, and providing emotional support and guidance.

Transitioning

Transitioning is a term used by clinicians to describe the period of time in between the
actively dying phase and the imminent phase. In this phase, patients begin to withdraw
from the physical world around them in preparation for their final journey. Some examples
of this could include: decreased interest in activities of life, less frequent and shorter
interactions with others, and acknowledgement of the presence of people and things that
are not visible by clinicians and caregivers. This is referred to as “nearing death
awareness” and often documented by clinicians as “hallucinations.” Possible explanations
of this phenomenon from the medical community are as a result of hypoxia, acidosis, or
alterations in metabolic processes. Patients will generally not exhibit any signs or
symptoms of distress with this awareness, whereas patients whose dying is taking the
difficult road might show signs of distress or agitation with their awareness.

During transitioning, it is important to keep the patient’s area as comfortable and peaceful
as possible. Common lights and noises can contribute to restlessness and agitation;
therefore it is advisable to keep lights soft, shades closed if possible, and external noises
limited to a minimum.

Imminent

The term imminent is defined as “about to happen, forthcoming or near” (Merriam-

Webster, 2012). The patient has transitioned into this last phase of the dying process and
death can occur at any point now. Not all individuals will present with every sign or
symptom, and the symptoms will occur in no particular order. During this phase, the body
is in the process of shutting down. Multi-system organ failure often occurs and will result
in some typical symptoms (Table 9.2).

Table 9.2 Signs and Symptoms of Imminent Death

System Symptom
Cool and clammy skin

Cardiological/ Circulatory Mottled extremities

Rapid or irregular pulse

Musculoskeletal Inability to ambulate

 Inability to move/turn in bed

Increased lethargy

More difficulty to arouse

Neurological
Confusion

Restlessness

Increased respiratory rate

Periods of apnea or Cheyne-Stokes respiration pattern

Respiratory
Inability to cough or clear secretions

Presence of increased secretions (“death rattle”)

Urinary Decreased and/or dark urine output

Often the change of care will focus as death becomes imminent (Berrie & Griffie, 2010).
The assessment of vital signs will cease unless requested by the family, at which point the
nurse would gently explain the overall rationale for measuring vital signs and whether this
would provide any benefit for the patient. Out of all the stages of the dying process, this
last phase is the one in which impending death becomes a reality for everyone involved.
The family knows that their loved one will die; however, it is usually not as evident as it
can be until death becomes imminent. During this phase, the patient becomes unresponsive
to those around them and may appear to be sleeping. Sometimes the patient’s eyes will be
partially open as they are resting. In hospice, we believe that the patient can still hear or
sense the activity and loved ones around them and so we teach families to continue to talk
to and gently touch their loved ones.

The interaction between the patient and their family during the imminent phase is very
individual. Some families are distant and uncomfortable being near their loved one during
this phase. No one wants to see their loved one in that state; it hurts to watch, and can be
too painful for some to cope with. Even though the family may know death is imminent, it
will not feel real until they are actually seeing it. Other families may be very involved with
the patient during this phase: lying in bed with their loved one, talking to them, and being
present in the moment. Neither scenario is wrong, and the nurse caring for patients at the
end of life needs to always remember that. The nurse should support the patient and
family, reserve judgment, and not make assumptions about the reasons behind the family’s
behavior. The nurses’ role is not to be the authority on how the family should act, but to
provide comfort and quality of life for the patient and empathetic support to the family.

There are often several nursing interventions and activities for the nurse to perform during
the imminent phase. Most of which are related to the communication, coordination and
continual assessment and response to changes in patient’s status. When the death is
imminent, the family must be informed that death is near. As mentioned before, sometimes
this is shocking to the family, despite knowing that their loved one is dying. This has to be
communicated to the family in a sensitive and calm manner. Each nurse will have their
own way to exchange this information, but it is very important that the family be told that
death can occur at any time so that they can prepare. There may be family in the area or out
of town that would like to come and see the patient and who is waiting until the patient
gets closer to death. It is important to educate families during the dying process that the
final phase may progress very quickly as a way to encourage loved ones to come sooner
rather than later.

The imminent phase is also the time when some families may want clergy or pastoral care
present. Depending on their religious affiliation, some patients and families may want
sacraments or special blessings performed before death occurs. It is important to tell the
family that the process leading to death has begun, and that if they would like clergy
present they should begin that process now. The nurse can assist families with obtaining
pastoral care if the family does not have their own. The coordination of spiritual support
may be extremely important to the family at this time and the nurse should be sure to
evaluate for this as part of their assessment.

The Death

There are two ways that death can be classified: clinical death and biological death.
Clinical death comes first and is when a person’s heart stops beating. Circulation of the
blood and respiration also stops once there is a cessation of heart beat. It is during this time
that individuals can be revived by way of CPR. Oxygen can be given, the blood can be
kept circulated and the heart beat could be potentially restored. Most patients who are at
the end of life opt for a do-not-resuscitate order, and therefore CPR is rarely given.
Research has found that CPR is ineffective at restoring heartbeat in patients who are living
with terminal illness (ELNEC, 2010). There is a 4 to 6 minute window in which patients
can be revived with CPR. Without CPR, in approximately 4-6 minutes after clinical death
(the cessation of heart beat), brain cells will begin to die from lack of oxygen. This is
called biological death and is called the point of no return, meaning that once the brain
dies, CPR will not be able to bring that person back. It is at this time that the cells in other
organs, such as kidneys or eyes, will also begin to die. Several hours after biological death
occurs, rigor mortis occurs. Rigor mortis is defined as the temporary rigidity of muscles
occurring after death (Merriam Webster, 2014). It results from the loss of adenosine
triphosphate (ATP) which makes muscles become stiff with the loss of energy flow (Bate-
Smith & Bendall, 1947). Rigor mortis will begin to set in several hours following death
and be at its peak 12-18 hours following death. Rigor mortis will disappear 48 hours
following death.

CPR is not typically performed with patients who are expected to die and those who have a
DNR, DNAR, or AND. Witnessing a patient’s death without the resuscitation process can
be difficult for the nurse or clinician, as we have been trained to do everything possible not
to cause or contribute to a patient’s death. In end-of-life care, the death is the expected
outcome of the care we provide, and as nurses we want to ensure that the patient has as
“good” a death as possible and that they have died in the manner they wished. But it is
very difficult to stand by and observe a death in progress—everyone silent with eyes fixed
on the patient’s chest. As mentioned before, respirations can become quite erratic, very
shallow with extended periods of apnea in between breaths. The moment will come in
which the patient’s chest will not rise again. This time period can seem like an eternity for
both the family and the nurse. Take extreme caution when determining whether or not the
last breath has been taken. Extended periods of apnea close to death can last up to a minute
or more. Be certain that death has occurred before proceeding to assess for signs of life.
Typically the patient’s mandible will drop and almost a sudden pallor will appear. The
pulse in the carotid artery may still be palpable, although very faint and thready, until the
heart catches up with the absent respirations. This may take a minute or two. Be sure to
listen for a heartbeat with a stethoscope for a full minute. In hospice this is performed for
two reasons: to ensure that the patient has died, and also to provide the family with the
extra peace of mind knowing that their loved one is really gone. Never fail to assess for
signs of life, including heartbeat, respirations, and pupil status by checking the patient’s
pupils with a light for fixation and dilation. The nurse should make sure that the patient is
covered with a light sheet up to below the shoulders. It is atypical for the deceased patient
to be completely covered including face and head, so refrain from doing so unless
otherwise directed by the family.

Following the death of a patient, the nurse should offer their condolences to the family and
extend assistance with contacting any other family members or individuals the family
requests. Depending on the location of the death, the nurse would contact the medical
examiner to notify them of the death, as well as the physician and other clinicians who
were involved with the patient. The nurse can also contact the funeral home for the family
as requested. In home care, the nurse would ask the family if it was alright to remove any
tubes or catheters from the patient, and if they would like to assist in bathing/preparing the
patient for transport to the funeral home. The nurse would assist the family in removing
any jewelry or other items from the patient. Be sure to maintain the highest dignity and
respect for the deceased patient during this post-mortem care.

What You Should Know

 Dying is a multi-faceted process that is uniquely individual to each person.

 The most common signs and symptoms before death include: increased
pulse/respiratory rate, Cheyne-Stokes respirations, cool/mottled skin, and decreased
urine output.
 It is important to provide support for the patient and family throughout the entire
dying process.
 Be sure to communicate to the family when a patient’s death becomes imminent so
that other family members and/or clergy can be called.

References

Bate-Smith, E. C. & Bendall, J. R. (1947). Rigor mortis and adenosine-triphosphate.

Journal of Physiology, 106(2), 177-185. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/-
articles/PMC1393748/pdf/jphysiol01486-0070.pdf
Berry, P. & Griffie, J. (2010). Planning for the actual death. In B.R. Ferrell & N.
Coyle (Eds.), Oxford Textbook of Palliative Nursing (pp. 629-644). New York: Oxford
University Press.

End of Life Nursing Education Consortium (2010). ELNEC – core curriculum training
program. City of Hope and American Association of Colleges of Nursing. Retrieved from
http://www.aacn.nche.edu/ELNEC

Imminent [Def. 1]. (n.d.). Merriam-Webster Online. In Merriam-Webster. Retrieved from

http://www.merriam-webster.com/dictionary/citation.

Rigor mortis [Def. 1]. (n.d.). Merriam-Webster Online. In Merriam-Webster.

Retrieved from http://www.merriam-webster.com/dictionary/citation.

Reference :

https://courses.lumenlearning.com/suny-nursing-care-at-the-end-of-life/chapter/care-at-the-
time-of-death/
A model to help nurses caring for patients who are terminally ill

01 December, 2003 By NT Contributor

Margaret Murphy, BSc (Hons), DipHE, Cert Onc Nurs.

Macmillan Palliative Care Specialist Nurse, The Ulster Hospital, Dundonald, Belfast

Coping with a terminal illness is very difficult for all involved. The 20th century has
brought about rapid advances in medical technology which has led, in some cases, to a
view of death as an unnatural process (Chadwick, 1992). For the patient who is dying, his
or her family and the health-care staff involved, emotional, attitudinal or behavioural
changes occur and influence the attempt to ease the transition from life to death.

Health-care workers’ awareness of how to identify and perhaps assist in solving problems
caused by emotional responses can help patients and families to accept the reality of death.
The ability to interpret the stages and the reactions of patients and families allows
professionals to create a solution that is workable for all. Doyle et al (1999) suggests that
‘the act of following relatively straightforward guidelines, however simplistic they may
appear, will at least give us a feeling of competence and enhance our ability to learn as we
practise’.

It has been observed that many patients with a life-threatening illness appear to adapt to
their condition (Copp, 1996). However, when the condition worsens and progresses to the
terminal stage, patients have to face up to new crises and transitions, leading them to view
their lives in different ways (Kubler-Ross, 1969). Many theoretical frameworks on death
and dying have been developed during the past three decades or so, such as those of
Kubler-Ross (1969), Pattison (1977), Corr (1992), Buckman (1994) and Copp (1996).
These models focus on the psychological responses and reactions to coping with
difficulties in the past. Nevertheless, the above models can be restrictive when exploring
the necessary facilitating adaptation to life’s transitional changes, such as dying.

Felner (1985) advocates a transitional framework allowing us to develop strategies for

enhancing individuals’ adaptive abilities across a wide range of life changes, including
dying. Moos’ adaptive task model (1986), which outlines adaptive and coping mechanisms
required by individuals during a period of crisis or transition, provides a useful theoretical
framework (Box 1).

Case study

John Pearson, aged 47, had been diagnosed with a gastric adenocarcinoma with metastatic
disease and had undergone surgical intervention. He was married with two teenage
children and was close to his mother, father and four siblings. Mr Pearson was employed
as a director of the family business. Despite demanding work commitments, he enjoyed
playing football, golf and jogging with one of his two sons. His immediate and extended
family had a strong Christian background.

At the time of diagnosis, the consultant made sure that Mr Pearson and his wife were
aware of the supportive role of the Macmillan clinical nurse specialist (CNS) in palliative
care. Her involvement began shortly after diagnosis and lasted 12 weeks, until Mr
Pearson’s death.

Moos’ model (1986) identifies five sets of adaptive tasks (Box 1), further suggesting that
these are experienced in every transition and crisis. However, this will vary with each
individual.

The concept of transition is not new. Parkes (1972) defines it as a change that necessitates
the abandonment of one set of assumptions and the development of a new set. However,
the case of Mr Pearson and his family fits well with the first four points of Moos’ adaptive
task model. This paper will examine and evaluate each of the five facets of Moos’ model
with reference to the case of Mr Pearson.

Establishing the meaning and significance of the situation - Moos (1986) described this as
the period of initial understanding of the personal significance of the trajectory. Mr
Pearson’s diagnosis was further discussed with him two days after the surgery to remove
the tumour. His immediate reaction was: ‘Whatever time is left will be full - it is out of our
hands.’ This may be a reaction that is difficult for many to understand. However, Moos’
model discusses coping skills to deal with the tasks and suggests that mental preparation is
a skill often practised before and after an event.

Mr Pearson had attended the outpatient department for scan results before surgery and was
aware of the cancer. This had possibly given him time to think about what his reaction to
further bad news would be if he had to face it, which had enabled him to accept the reality.

In addition, his calmness may have come from the senior position he held in the family
business, in that he was familiar with crisis intervention and dealt with this situation in his
usual manner. As Mr Pearson’s illness progressed he discussed the diagnosis with his wife,
reflecting on conversations with the consultant and what the future held.

Some members of the multidisciplinary team had difficulty in understanding Mr and Mrs
Pearson’s control of their emotions. Smith (1993) suggests that many patients and families
may cope well at the terminal stage - consequently, there would be little value in digging
for signs of distress. Smith (1993) says that families do not automatically have problems
when one of its members has an end-stage illness, and professionals must not always
assume they will need specialist counselling. Buckman (1994) supports this, saying
‘emotions and responses exhibited by a person facing death are characteristics of the
person, not the diagnosis’. Applying the Moos’ model enabled the team to understand Mr
Pearson’s calm reaction to his diagnosis.

Confronting reality - It often appears to be difficult for patients to adjust to hospitalisation

and the diagnosis of a life-threatening illness and the stress and anxiety it generates - it not
only affects the patient, but also the whole family.

Mr Pearson’s wife and his brothers discussed the future with regards to his status as a
father, provider for the children and managing director of the family business. Mr Pearson
seemed determined to remain the head of the house-hold and breadwinner from his
hospital bed, although there was no question of him being able to fulfil these roles at that
time.
Moos (1986) suggests that in any crisis or transition a number of issues - which are
external to the event itself - have to be dealt with. This appeared to fit Mr Pearson’s
situation. Hopson (1981) supports this, stating that people adopt strategies such as
reminding themselves that they are relatively well off compared with some other people.
According to Moos, this response to diagnosis could be described as ‘cognitive
redefinition’. This was how Mr Pearson, his wife and his siblings accepted the reality, and
together they restructured it into a more acceptable experience.

Mr Pearson’s parents were very proud of their family and stated that the power of prayer
would see them through. Thus they expressed the realisation that there was nothing they
could do to change the situation, but used their belief to help them cope with what they had
to face. There are suggestions that sickness may be seen as God’s will (Dein and Stygall,
1997); Hall (1994) suggests that hope maintained by religious belief can serve as a vehicle
to understand death, or to maintain a positive attitude in difficult situations.

Sustaining relationships with family and friends - Mr Pearson had 24-hour support from
his family, who worked out a rota system which had two family members staying at his
hospital bedside while two others went home to rest.

The stoma-care nurse became involved with Mr Pearson’s care because of a discharge at
the wound site. However, some ward staff felt inadequate in providing Mr Pearson’s care,
expressing a feeling that the nurse-patient relationship was compromised as a result of the
overwhelming presence of family members.

Moos model suggests that it could be difficult to keep communication lines open, but this
is important in order to maintain and facilitate support and should take place between staff,
family and patient.

Moos points out that, in some situations, support is needed from people outside the family,
especially where this is a closeknit unit, so at this stage the palliative nursing care support
was increased.

It was soon discovered that not only the nursing staff were experiencing difficulties, but
also Mr Pearson’s wife: she expressed concern over some family members ‘taking
control’. The Macmillan CNS facilitated a group session with the family to explore the
thoughts, perceptions and questions they needed answered. Reimer and Davis (1990) state
that a fundamental principle of palliative care is ‘that the patient and family together
comprise the unit of care’. This group meeting resulted in substantial benefits, in that Mrs
Pearson gained a better understanding of the family’s needs and reasons for their
involvement. The family fundamentally felt that Mrs Pearson needed more time to spend
with the children, who were taking important school examinations. As a result of this
discussion, the family and Mrs Pearson came to a mutual understanding about one
another’s feelings and were able to offer mutual support.

Mr Pearson spoke daily with the consultant about his illness when the reality of
deterioration became more evident. Mrs Pearson also had a consultation with the surgeon,
which enabled her to get a fuller picture of her husband’s probable progression.
Information-giving is an important component of greater openness and trust (Twycross,
1997). At this stage Mr Pearson decided to mend the relationship between himself and a
work colleague whom he thought he had offended at one time. Twycross (1997) suggests
that this is a ‘renewed need’ for someone who is nearing the end of life.

Maintaining a reasonable emotional balance - Throughout Mr Pearson’s illness his

calmness created a sense of unease within the multidisciplinary team. Some members
interpreted his attitude and behaviour as complete denial (Box 2).

Mr and Mrs Pearson openly discussed his inevitable death but they acknowledged they had
difficulty with the fact that they did not know how soon this would happen.

Despite Mr Pearson’s awareness of his limited life expectancy he remained calm and
maintained communication with his family. However, there was unrest between Mr
Pearson’s brothers and his wife. She asked if a further meeting with the Macmillan CNS
was possible. This was arranged in a suitable, neutral environment, which was very
important, to allow all family members to interact with each other without fear. During this
meeting it became apparent that the waiting was becoming a strain for individuals and they
did not want to upset Mr Pearson with their sadness.

Worden (1987) argued that families who keep their feelings bottled up or distance
themselves from what is happening prevent themselves from resolving their grief. It was
suggested that the family talk to Mr Pearson about this. Kubler-Ross (1969) also suggests
that families who share emotions can face the reality of separation together.

Preserving a satisfactory self-image - Price (1993) suggests that when cancer surgery scars
are covered up patients still feel that the disease has violated that part of their body, and
some experience altered body image. He also suggests that nurses appear to neglect this
area, thereby promoting negative feelings in the patient. Sarafino (1990) states that
adaptation to an altered body image can be facilitated by a strong self-image, which can
give back patients a sense of control when they become seriously ill, resulting in an ability
to adjust to illness.

Mr Pearson continued to approach his illness in a very adjusted and controlled manner,
despite the fact that some members of the multidisciplinary team expected him to become
distressed. At this stage his body image had altered significantly as he was becoming
increasingly emaciated.

Pattison (1977) discusses the specific decisions a dying person can make, regarding wills,
property, family matters, funerals and burial, up until the point that he or she has to
relinquish control. Despite his rapidly deteriorating condition, Mr Pearson took control of
all of the above. He also recognised his extreme weakness and was considerate of his
family’s feelings of sadness and distress at his emaciated body. He felt if he could remain
in contact with his family, friends and the staff, he would remain the unique person he was.

Conclusion

Being involved in the care of Mr Pearson and his family was a great privilege. He and his
family worked through the task of confronting reality with courage, dignity and
togetherness. His parents provided the comfort and safety Mr Pearson and the family
needed.
Staff who had had training in communication skills and cancer care had an increased
understanding and sympathy for Mr Pearson and the family, while those who had not had
training tended to use nursing tasks to block their emotional involvement.

During Mr Pearson’s illness the ward manager organised multidisciplinary meetings. This
proved to be a very beneficial forum for discussion of the patient’s and family’s care. It
also allowed professionals to share ideas of care and to enhance their understanding of the
transition from life to death.

Mr Pearson died peacefully 12 weeks after diagnosis with his family around him.

Coping with a terminal illness is a challenge for all those involved. Facing the challenge of
controlling the fear, and not allowing it to control us, eases this transition from life to
death.

- The patient’s name has been changed.

Acknowledgement

The author would like to thank the patient’s family; and also Olive Ashfield, Nurse
Education Consultant, Beeches Nursing and Midwifery Education Centre, Dundonald,
Belfast; Cherith Semple, Macmillan Head and Neck Clinical Nurse Specialist, Ulster
Hospital, Dundonald, Belfast; and members of the health-care team involved in John
Pearson’s care.

Buckman, R. (1994)How to break bad news: guide for health-care professionals. In:
Breaking Bad News: A six-step protocol. London. Pan Books.

Chadwick, R. (1992)Ethics in Nursing Practice. London: Macmillan.

Copp, G. (1996)Facing Impending Death: The experiences of patients and their nurses in
a hospital setting. Oxford: Oxford Brookes University.

Corr, C.A. (1992)A task-based approach to coping with dying. Omega 24: 2, 81-94.
Dein, S., Stygall, J. (1997)Does being religious help or hinder coping with chronic
illness? A critical literature review. Palliative Medicine 11: 4, 291-298.

Doyle, D., Hanks, G.W.C., MacDonald, N. (1999)Oxford Textbook of Palliative

Medicine: Communication on palliative care - a practical guide (2nd edn). Oxford: Oxford
Medical Publications.

Felner, R.D. (1985)Preventive Psychology. New York, NY: Pergamon Press.

Hall, B.A. (1994)Ways of maintaining hope in HIV disease. Research in Nursing and
Health 17: 238-293.

Hector, W., Whitfield, S. (1982)Nursing Care for the Dying Patient and the Family.
London: Heinemann Medical.

Hopson, B. (1981)Response to paper by Schlossberg, Brammer and Abrego. Counseling

Psychologist 9: 2, 36-39.

Kubler-Ross, E. (1969)On Death and Dying (1st edn). New York, NY: Macmillan.

Moos, R.H. (1986)Coping with Life Crises: An integrated approach. New York, NY:
Plenum.

Parkes, C.M. (1972)Bereavement: Studies of grief in adult life (1st edn). Harmondsworth:
Penguin

Pattison, E.M. (1977)The Experience of Dying. London: Prentice-Hall.

Price, B. (1993)Dignity that must be respected. Professional Nurse 8: 10, 670-672.

Reimer, J.C., Davies, B. (1990)Families in supportive care. Part 1: the transition of

fading away: the nature of the transition. Journal of Palliative Care 6: 3, 12-20.

Sarafino, E.P. (1990)Coping with reducing stress. In: Sarafino, E.P. Health Psychology.
Bio-psychosocial interactions. Chichester: John Wiley and Sons.

Smith, E. (1993)Psychology. Los Angeles, Ca: West.

Twycross, R. (1997)Introducing Palliative Medicine. Oxford: Radcliffe Medical Press.

Worden, W.J. (1987)Grief Counselling and Grief Therapy. London: Tavistock

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