Chapter 013

Chapter 13
Palliative Care at the End of Life
Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Palliative Care at the
End of Life (Cont.)
 Hospice palliative care
 Care aimed at improving the quality of life of clients
with life-threatening illness and of their families
through the relief of pain and suffering
 End-of-life (EOL) care
 Care provided in the last days or weeks of life
 Palliative care
 An approach that improves the quality of life of
clients and their families facing problems
associated with life-threatening illness

2
End of Life (Cont.)
 Goals of palliative care
 Provide relief from symptoms, including pain
 Regard dying as a normal process
 Affirm life and neither hasten nor postpone death
 Support holistic client care and enhance quality of
life
 Offer support to clients to live as actively as possible
until death
 Offer support to the family during the client’s illness
and in their own bereavement

3
End of Life (Cont.)
 Integrate palliative approach to care focuses on
meeting the client’s and family’s full range of
needs
 Shared-care model
 Varies across the country as provision of health
care is a provincial/territorial responsibility
 “The Way Forward” (CHPCA, 2013)

4
Success Factors for Integrated
Palliative Approach to Care

5
Physical Manifestations at
End of Life
 Death
 Permanent loss of capacity for consciousness and
all brain stem functions
 The irreversible cessation of all functions of the
entire brain, including the brain stem
 Occurs when all vital organs and systems cease to
function

6
End of Life (Cont.)
 Minimum acceptable clinical standards of
death
 Absence of palpable pulse, breath sounds, heart
sounds, respiratory effort, or chest wall motion
 Loss of pulsatile arterial blood pressure according to
noninvasive measurement
 Coma and fixed pupils, observed continuously and
confirmed after 2–5 minutes

7
End of Life (Cont.)
 Trauma and disease affect physical
manifestations
 Metabolism is ↓.
 Body gradually slows down until all function ends.
 Generally, respirations cease first.
• Heart stops beating within a few minutes.

8
Physical Manifestations:
Hearing, Taste, Smell, and Sight
 Taste, smell, hearing, and sight
 Hearing usually last send to disappear
 ↓ with disease progression
 Blurring of vision
 Sinking and glazing of eyes
 Blink reflex absent
 Eyelids remain half-open

9
Integumentary System
 Mottling on hands, feet, arms, and legs
 Cold, clammy skin
 Cyanosis on nose, nail beds, knees
 “Waxlike” skin when very near death

10
Respiratory System
 ↑ respiratory rate
 Cheyne–Stokes respirations
 Inability to cough or clear secretions
 Grunting, gurgling, or noisy congested breathing
 Irregular breathing
 Slowing down to terminal gasps

11
Urinary System
 Gradual ↓ in urinary output
 Incontinent of urine
 Unable to urinate

12
Gastro-intestinal System
 Loss of appetite and thirst sensations
 Slowing of digestive tract and possible cessation
of function
 Accumulation of gas
 Distension and nausea
 Loss of sphincter control
 Bowel movement may occur before imminent
death or at the time of death.

13
Musculo-skeletal System
 Gradual loss of ability to move
 Sagging of jaw resulting from loss of facial
muscle tone
 Difficulty speaking
 Swallowing can become more difficult.

14
Musculo-skeletal System (Cont.)
 Difficulty in maintaining body posture and
alignment
 Loss of gag reflex
 Jerking seen in clients on large amounts of
opioids (myoclonus)

15
Cardiovascular System
 ↑ Heart rate
 Later slowing and weakening of pulse
 Irregular rhythm
 Decrease in blood pressure
 Delayed absorption of drugs administered
intramuscularly or subcutaneously

16
Psychosocial Manifestations
at the End of Life
 Altered decision making
 Anxiety about unfinished business
 ↓ Socialization
 Fear of loneliness
 Fear of meaninglessness
 Fear of pain

17
at the End of Life (Cont.)
 Helplessness
 Life review
 Peacefulness
 Restlessness
 Saying goodbyes

18
at the End of Life (Cont.)
 Unusual communication
 Vision-like experiences
 Withdrawal

19
Grief and Bereavement
 Bereavement
 Period after the death of a loved one during which
grief is experienced and mourning occurs
 Time spent in bereavement is individual.
 Bereavement and grief counselling are
components of hospital palliative care.

20
Grief and Bereavement (Cont.)
 Grief is a normal reaction to loss
 Anger, guilt, anxiety, sadness, depression,
despair, or a combination of these
 Disruption in sleep, changes in appetite,
physical symptoms, and illness
 Anticipatory grief: takes place before the actual
death

21

22

23
Spiritual Needs
 Beliefs, values, and practices that relate to the
search for existential meaning and purpose
 Assessment is a key consideration.
 Respect the client’s wishes with regard to
spiritual guidance or pastoral care services and
make referrals as appropriate

24
Culturally Competent Care
 Ways in which people understand and
experience death varies across cultures
 Understanding care of dying clients and
practices or rituals concerning the care of the
body upon and immediately after death

25
Legal and Ethical Issues Affecting
End-of-Life Care
 Clients and families struggle with many
decisions during the terminal illness, such as
 Cardiopulmonary resuscitation
 Admission to intensive care units

26
Legal and Ethical Issues Affecting
End-of-Life Care (Cont.)
 The intrinsic value and uniqueness of each
person, the person’s right to self-determination,
and autonomous decision making.
 Advance care planning (substitute decision
maker)
 Process of a client’s thinking about and sharing his or
her wishes for future health and personal care
 Advance directives

27
Legal Documents Used in
End-of-Life Care
 Advanced care planning (ACP)
 Advance directives
• Written documents prepared by competent persons
outlining treatment wishes should become incapacitated
 Instructional directives (living wills or treatment directives)
 Proxy directives (power of attorney for personal care)

28
 Do not resuscitate (DNR)
 Order instructing health care providers not to
attempt CPR
• Often requested by family
• Does not preclude the use of other forms of treatment or
care
 Full code
 Allow natural death (AND)
 Withholding or withdrawing treatments
 Needs a health care provider prescription

29
 Power of attorney for personal care
 Lists the person(s) to make health care decisions
should a client become unable to make informed
decisions for self
 May be called substitute decision maker, agent, or
proxy

30
Physician-Assisted Dying
 February 6, 2015
 Supreme Court of Canada, in its decision in
Carter v. Canada (Attorney General),
unanimously struck down the Criminal Code
prohibitions against assisted dying under certain
specific circumstances

31
Palliative Sedation
 To intentionally produce sedation in order to
relieve intractable symptoms in the last days of a
client’s life
 The principle of double effect justifies the use of
medications that cause sedation as a adverse
effect, an unintended harm, as its primary role is
to relieve suffering and that are not intended to
hasten death.

32
Palliative Sedation (Cont.)
 Opioid use at the end of life is often
misunderstood.
 Many clients do not receive adequate
medication, which may lead to physical and
emotional suffering from uncontrolled pain and
symptoms.
 Terminally ill client should not be concerned with
physical dependence when the goal of treatment
is comfort until death.

33
Organ and Tissue Donation
 All persons who are 16 years of age or older and
are competent may choose organ and tissue
donation.
 Only clients who have sustained a
nonrecoverable injury and are on life support
may donate organs.
 All clients have the potential to donate tissue.
 Should be on clients medical record

34
Nursing Management: End of Life
 Holistic
 Psychosocial, physical needs
 Respect, dignity, and comfort
 Focuses on
 Psychosocial manifestations
 Grieving process
 Physical changes associated with dying
 Management of symptoms

35
Nursing Assessment
 Varies with
 Client condition
 Proximity of approaching death
 Comprehensive or limited to essential data
 Document-specific change that brought client
into health care agency

36
Nursing Assessment (Cont.)
 If client is alert
 Brief review of body systems to detect signs and
symptoms
 OPQRSTUV (onset, provoking/palliating, quality,
region/radiation, severity, treatment,
understanding/effect on the examiner, and values)
 Agree with suggested change
 Assess for discomfort, pain, nausea, constipation,
and dyspnea
 Assess coping abilities of client, family

37
 Functional assessment of activities of daily
living
 Client’s abilities
 Food and fluid intake
 Patterns of sleep and rest
 Response to the stress of terminal illness

38
 Frequency of assessment depends on client’s
stability but is done at least every 8 hours in
an institutional setting; weekly in the home
care setting
 As changes occur, assessment and documentation
need to be done more frequently.
 Social assessment

39
 As death approaches, neurological
assessment is important.
 Physical assessment may be limited to gathering
essential data (e.g., level of distress).
 Evaluation of level of consciousness, presence of
reflexes, and pupil responses

40
 Evaluation, monitoring
 Circulation changes
• Vital signs, skin colour, temperature
 Respiratory status
 Character and pattern of respirations

41
 Evaluation, monitoring (Cont.)
 Nutritional and fluid intake, urinary output, bowel
functioning
 Skin condition
• Fragile, may break down

42
 Be sensitive
 Do not impose repeated, unnecessary
assessments on dying client
 Use health history data available in chart
 However, important to assess the client’s
status frequently

43
Nursing Diagnoses:

44
Nursing Diagnoses:
Physical Manifestations

45
Planning
 Coordination of care focuses on
 Client’s needs
 Family and significant others’ needs
 Education, counselling, advocacy, support

46
Planning (Cont.)
 Goals
 Centre on client’s abilities to express and share
feelings with others
 During the last stages of life, involve comfort
measures and physical maintenance care

47
Implementation
 Psychosocial care
 Anxiety and grief may be barriers to learning.
 Anxiety and depression often exhibited by the
client.
• Anxiety is an uneasy feeling caused by a source that is
not easily identified.
• Frequently related to fear
 Management
• Pharmacological
• Nonpharmacological interventions

48
Psychosocial Care (Cont.)
 Anxiety and depression (Cont.)

 Causes
• Pain that is out of control, psychosocial factors related to
disease process or impending death, altered
physiological states, drugs used in ↑ doses
 Encouragement, support, and education ↓ some of
the anxiety

49
 Anger
 Hopeless and powerless
 Common during the EOL period
 Encourage realistic hope within limits of situation
 The client’s involvement in decision making about
care should be supported, to foster a sense of
control and autonomy.

50
 Anger
 Fear
 Typical feeling
 Nurse assists with coping
 Specific fears:
• Pain
• Shortness of breath
• Loneliness and abandonment
• Meaninglessness

51
 Fear of pain
 Tendency to associate death with pain
 Physiologically, no indication that death is always
painful

52
 Fear of pain (Cont.)
 Terminally ill clients experiencing pain should have
pain-relieving drugs available.
 Most clients want their pain relieved without the
adverse effects of grogginess or sleepiness.
• Do not deprive ability to interact with others

53
 Fear of loneliness and abandonment
 Do not want to be alone, fear loneliness
 Fear loved ones cannot cope and will abandon
them.
 Want someone they know, trust to stay
• Loved one, caregiver provides comfort and support.

54
 Fear of loneliness and abandonment (Cont.)
 High-quality nursing responses
• Holding hands, touching, listening
 Simply providing companionship allows the dying
person a sense of security.

55
 Fear of meaninglessness
 Leads most to review their lives
• Intentions during life, examining actions
• Expressing regret
• Helps recognize the value of their lives
 Worth of dying person needs to be expressed.

56
 Fear of meaninglessness (Cont.)
 Nurse can help clients and families identify positive
qualities of client’s life.
 Respect and accept practices, rituals associated
with client’s life review without being judgemental

57
 Communication
 Therapeutic communication
 Empathy and active listening
 Allow clients and families time to express feelings,
thoughts

58
 Communication (Cont.)
 Unusual communication by client may take place
at the end of life.
• Confused, disoriented, garbled

59
 Clients may
• Speak to or about family members or others who have
predeceased them
• Give instructions to those who survive them
• Speak of projects yet to be completed

60
 Active, careful listening allows identification of
specific patterns in client’s communication
• ↓ risk for inappropriate labelling of behaviours
 Empathy
 Silence

61
Physical Care
 Symptom management and comfort
 Priority is to meet physiological and safety
needs.
 Dying clients deserve same care as people
who are expected to recover.

62
Physical Care (Cont.)
 Needs
 Oxygen
 Nutrition
 Pain relief
 Mobility
 Elimination
 Skin care

63
Pronouncement of Death
 In many jurisdictions and agencies, registered

nurses are legally able to pronounce death.
 Pronouncement of death differs from
certification of death.

64
Pronouncement of Death (Cont.)
 Pronouncement of death: Determination that

life has ceased, based on a physical
assessment
 Certification of death: The legally required
completion of a death certificate stating the
cause of death
 Can only be undertaken by a physician or a
coroner

65
 When pronouncing death

 Begin by recognizing the family
• “I’m sorry for your loss . . . ”
• “This must be very difficult for you . . .”
 The family can be invited to stay in the room for the
pronouncement.
 Ask if the family wishes to speak with a chaplain if
one is not already present

66
 Pronouncement of death
 Confirm identity by checking the armband
 Note general appearance of body and ascertain
that client does not rouse to verbal or tactile stimuli
 Check for absence of heart sounds and carotid
pulse
 Look and listen for absence of spontaneous
respirations and pupillary light reflex

67
 Prepare or assist in caring for the body

 Close eyes
 Replace dentures
 Wash the body as needed
 Remove tubes and dressings
 Straighten the body
 Pillows to support the head
 Rolled towel under the chin to close the mouth

68
 Allow family privacy and as much as time as
they need with deceased person
 Unexpected or unanticipated death
 Preparation of body for viewing or release to a
funeral home depends on provincial/territorial law
and agency policies and procedures.

69
The loss of a loved person is one of the most
intensely painful experiences any human
being can suffer.
– Bowlby (2000)

70
Special Needs of Family Caregivers
 Role of caregiver includes
 Working, communicating with client
 Supporting client’s concerns
 Helping client resolve any unfinished business
 Working with other family member and friends
 Dealing with their own needs and feelings

71
Special Needs of Family
Caregivers (Cont.)
 Look for signs and behaviours among family
members who may be at risk for abnormal
grief reactions
 Be prepared to intervene if necessary

72
Caregivers (Cont.)
 These may include
 Dependency
 Negative feelings about dying person
 Inability to express feelings
 Sleep disturbances
 Concurrent life crises
 History of depression

73
Caregivers (Cont.)
 These may include (Cont.)
 Difficult reactions to previous losses
 Perceived lack of social or family support
 Low self-esteem
 Multiple previous bereavements
 Alcoholism
 Substance abuse

74
Caregivers (Cont.)
 Encourage the caregiver to continue usual
activities as much as possible
 Discuss activities and maintain some control
over their lives
 Discuss what can and cannot change
 Encourage the caregiver to take care of
himself or herself

75
Special Needs of Nurses
 Many nurses who care for dying clients do so
because they passionately care about
providing high-quality EOL care
 Caring for dying clients is intense and
emotionally charged.

76
Special Needs of Nurses (Cont.)
 Be aware of how grief affects them personally
 Not immune to feelings of loss
 Common for nurse to feel helpless and
powerless when dealing with death
 Feelings of sorrow, guilt, frustration need to be
expressed.

77
 Recognize and acknowledge what can and
cannot be controlled
 Recognize personal feelings to allow
openness
 Okay to cry with client or family during
grieving process

78
 Interventions focusing on personal needs will
assist in alleviating stress for the nurse
 Hobbies or other interests
 Scheduling time for oneself
 Maintaining a peer support system
 Developing a support system beyond the
workplace

79
 Specialized hospice palliative care teams can

help nurses cope
 Professionally assisted groups
 Informal discussion sessions
 Flexible time schedules

80

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Chapter 13

Palliative Care at the End of Life

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

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Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

Copyright © 2019 Elsevier Canada, a division of Reed Elsevier Canada, Ltd.

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 Anxiety and depression (Cont.)

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