The document discusses end-of-life care including palliative care, hospice care, the dying process, and goals of end-of-life care. It describes the physical, psychosocial, and spiritual manifestations patients may experience as death approaches. Key aspects of end-of-life care are managing pain, dyspnea, fatigue, and providing emotional and spiritual support for patients and their families. Legal and ethical principles of advance care planning and allowing a peaceful death are also addressed.

1. Carla Hunt, RN, BSN
“To live in hearts we leave behind is not to die”
Thomas Campbell

2. Realities of Care
Rapidly aging U.S. population
Medical care has limitations and inappropriate use
of advanced technology to prolong life when death
is inevitable (Peaceful Death: Recommended Competencies and Curricular
Guidelines for End-of-Life Care, 1997).
Exorbitant expense is associated with futile care
 2.5 million U.S. deaths have been negotiated
annually while life-extending/sustaining
measures were provided (Tilden & Thompson, 2009).

3. Palliative Care
Intends to improve the quality of life for patients and
families faced with life-limiting illness (World Health Organization,
2012).
 Provides support in chronic illness: cardiac (CHF),
pulmonary (COPD), renal disease, cancer, immune
suppression, HIV/AIDS , dementia, traumatic injury
(McLean-Heitkemper, 2011).
Care or treatment that reduces or controls symptoms
instead of seeking cure or efforts to delay death.

4. Palliative Care
Begins after the patient receives the diagnosis
of life-limiting illness.
Goals:
 Prevent and relieve patient suffering
 Improve quality of life
Timeframe includes hospice, end-of-life, and
bereavement.
Generally precedes hospice.
Hospice philosophies are the foundation of
palliative care.
McLean-Heitkemper, 2011

5. Hospice
Holistic, compassionate care for the dying and their family
during terminal illness.
Hospice Medicare eligibility requires a prognosis of less
than six months life expectancy.
Provides supportive care for patients in the last phase of
incurable disease. Palliative focus instead of curative.
Preserves dignity and quality of life throughout the dying
process.
Focuses on symptom management, advanced care
planning, spiritual care, family support, and bereavement.
McLean-Heitkemper 2011

6. Hospice
Addresses physical, emotional, social, and spiritual
needs of patients and families.
Collaborative and coordinated care via
interdisciplinary team members.
Care team includes: physicians, pharmacist, nurses,
nursing assistants, chaplain, volunteers, social worker,
and bereavement coordinator.
Services offered in the home, hospital, residential
care center, and nursing home.
McLean-Heitkemper 2011

7. End-of-Life
Generally refers to care in the final phase of illness
when the patient is near death or actively dying.
EOL care may be a few hours, weeks, or months .
The timeframe from diagnosis to death varies by
diagnosis and disease extensiveness.
Institute of Medicine considers EOL as the time of
coping with terminal illness or advanced age even
if death is not clearly imminent.
McLean-Heitkemper, 2011

8. Goals of EOL Care
Comfort and supportive care for the patient
and family during the dying process.
Improved quality of life for the life that
remains.
Dignified and peaceful death.
Emotional support for both patient and family.
McLean-Heitkemper, 2011

9. Consider for a moment…..
How would your life change if you learned
you would die in the next 12 months, six
months, or one month? (Sherman, Matzo, Panke, Grant, Rhome ,
2003)
What would you want to do if you were
diagnosed with a terminal condition?
How would you need to do to prepare?
Never loose sight of how very personal this
is for the patient and family!

10. When will death occur?
Prognosis is influenced by disease, desire to
live, and sometimes anticipation of special
events (Sherman, Matzo, Pitorak, Ferrlll, Malloy, 2005).
Not all patients experience the same
symptoms as there is no specific sequence
(McLean-Heitkemper , 2011).
Death results when all vital organ function
stops (cardiac, respiratory, and brain).

11. Brain Death
No brain or brainstem function.
Cerebral cortex no longer functions or is
irreversibly damaged.
 Clinical brain death in the ICU—heart continues
to beat (intubation with mechanical ventilation).
Legal definition—brain function must cease for
brain death to be pronounced and life support
removed.
McLean-Heitkemper 2011

12. Death Draws Near:
Physical Manifestations
Slowed metabolism and impaired organ function
that leads to multi-system failure and organ shut-
down.
Respirations are usually the first to stop.
Heart usually stops within a few minutes of
respirations.
McLean-Heitkemper 2011

13. Death Draws Near:
Physical Manifestations cont.
Sensory:
Decreased sensation
Decreased ability to perceive pain and touch
Poor sense of taste and smell
Eyes: blurred vision, absent blink reflex,
sunken, glazed over, blank stare, slit eye lids
Loss of hearing (last sense to loose)
Inability to respond
McLean-Heitkemper, 2011

14. Death Draws Near:
Physical Manifestations cont.
Respiratory: (distress and air hunger common)
Rapid, slow, shallow, irregular breathing
Cheyne-Stokes respirations (alternating apnea
and deep, rapid respirations)
Slowed respirations “terminal gasps” or “guppy
breaths”
Unable to cough and clear secretions
Noisy, gurgling secretions audible without a
stethoscope, “death rattle”
McLean-Heitkemper, 2011

15. Death Draws Near:
Physical Manifestations
Cardiovascular:
Increased heart rate that begins to slow
Weak or absent pulses
Progressive decrease in blood pressure
Delayed absorption of injected medications
Irregular rhythm
McLean-Heitkemper 2011

16. Death Draws Near:
Physical Manifestations cont.
Urinary:
 Decreasing output
 Incontinent
 Inability to void
Gastrointestinal:
 Decreased motility and peristalsis
 Abdominal distention, nausea, and constipation
 Loss of sphincter control makes incontinence common
as death occurs.
McLean-Heitkemper 2011

17. Death Draws Near:
Physical Manifestations cont.
Musculoskeletal:
 Severe weakness and inability to move
 Relaxed facial tone—jaw drop, difficulty/inability
to speak and/or swallow
 Poor body posturing and alignment
 Impaired gag reflex
 Myoclonus (involuntary jerking commonly seen
with high-dose opioids)
McLean-Heitkemper 2011

18. Death Draws Near:
Physical Manifestations cont.
Integumentary:
 Cold, clammy, diaphoretic, fever
 Cyanosis of nose, nail beds, ears
 Mottling of hands, feet, toes, arms, legs, and
knees
 Skin may have wax-like appearance
McLean-Heitkemper 2011

19. Death Draws Near:
Psychosocial Manifestations cont.
Conflicting decisions
Anxiety regarding things left undone
Feelings of meaningless life contributions
Fear of pain or shortness of breath
Loneliness
Helplessness
Depression
McLean-Heitkemper 2011

20. Death Draws Near:
Psychosocial Manifestations cont.
Anticipatory grieving
Difficulty saying goodbye
Reminiscent of life’s events
Fear of loss of independence and functional
decline
Recognized condition deterioration that patient
correlates with approaching death
Restlessness
Inability to understand communication
McLean-Heitkemper 2011

21. Confusion-Disorientation-Delirium
Management
Determine etiology—Disease progression, fever,
nearing death awareness, opioid effects, full
bladder , hypoxia, metabolic imbalances, toxin
accumulation due to liver or renal failure.
Management—Assess cause and treat, safety
precautions, administer sedatives, speak truthfully
regarding condition, provide spiritual and
emotional support, assess for caregiver fatigue.
McLean-Heitkemper 2011; Sherman et al., 2005

22. Dyspnea Management
Pharmacologic Nonpharmacologic
 Opioids (morphine)
 Bronchodilators (albuterol)
 Diuretics (furosemide)
 Benzodiazpines (lorazepam;
alprazolam)
 Anxiolytics (buspirone)
 Steriods (dexametasone, Solu-
Medrol)
 Antibiotics
 Oxygen if hypoxic
 Fan for air circulation, cool
room temperature
 Positioning, elevate head
of bead
 Suctioning
Sherman et al., 2004

23. Gastrointestinal Management
Nausea
 Antiemetics
 NG if obstructed
Constipation
 Stimulant (Senna)
 Bulk laxatives (Metamucil)
 Warm fluids (prune juice)
Diarrhea
 Opioids (Loperamide hydrochloride)
 Bulk forming agents
 Somatostatin (Sandostatin)
Sherman et al., 2004

24. Fatigue-Weakness Management
Increased weakness
Interventions include:
 Assist with ADL’s
 Bedrest—ROM, turning, positioning, and skin
assessment.
 Alter medication routes—least invasive and
most effective
 Aspiration precautions
 Suction
McLean-Heitkemper 2011; Sherman et al., 2004; Sherman et al., 2005

25. Pain Management
Patients fear that they will die in pain
Scheduled analgesia for pain control (long/short
acting)
Inability to swallow—consider alternate
administration routes
Interventions—massage, reposition,
bracing/splinting
Alternative/ complimentary therapies
Use standardized tools for pain assessment
McLean-Heitkemper 2011; Sherman et al., 2004

26. Comfort Care:
Actively Dying
Simple patient directions
Oral care—sips of fluid, mouth care, lip
moisturizer
Preventive skin care—manage incontinence, skin
barriers.
Medications to alleviate respiratory congestion,
agitation, pain, and dyspnea.
Antiemetics for discomfort associated with
nausea and vomiting.
Sherman et al., 2005

27. Care of the Spirit
May or may not mean religion
Spiritual support provides strength and
decreases despair at EOL
Pray with patient and family
Involve pastoral services
Recognize spiritual diversity and ritualistic
EOL practices
McLean-Heitkemper 2011

28. Emotional Support
Provide hope, comfort, and peacefulness (Matzo, Sherman, Sheehan,
Ferrell, & Penn, 2003).
 Reassure the patient you will not abandon them
 Ask yourself, “What would I do if this were my
family member?”
Provide realistic and honest information
Prepare for emotional decline and cognitive changes
Empathetic and compassionate care (McLean-Heitkemper, 2011)
Encourage sharing of life stories, memories, and life
contributions
Live your life until you die (Cramer, 2010).

29. Communication
Communication is 7% verbal, 38% tone, and 55% body
language (Cramer, 2010)
 Be present, use eye contact and touch, sit at the bedside,
listen more than you talk.
Communicate with open acceptance (McLean-Heitkemper, 2011)
Create an environment that feels safe to share feelings and
express emotion. Silence is ok.
Nearing death awareness:
 Patient may see or talk with a loved ones that have
died
 Patient may provide instructions for those left
behind

30. Response to Loss
 Grief is normal, healthy process of reacting to loss and adapting
to change.
Bereavement is the time after death when grief and mourning
occur
 Factors that influence grief:
 Personal characteristics
 Relationship with the deceased
 Life stressors
 Coping resources
 Support systems
 Often begins prior to death
 Powerful, affects all aspects of one’s life
 Nurse may be the recipient of anger. Do not react or take it personal.
McLean-Heitkemper 2011; Sherman et al., 2003

31. Grief/Bereavement:
Response to loss
Poor concentration, persistent sadness, constant
thoughts of the one who died
Guilt, anger, abnormal behavior
Weight loss, poor appetite
Difficulty sleeping, palpitations
Anxiety, fear, loneliness, hopelessness,
powerlessness
McLean-Heitkemper 2011

32. Legal and Ethical Principles in
Complex EOL Care
Care determined by the patient’s wishes (McLean-Heitkemper ,2011)
 Organ and tissue donations
 Advance directives
 Medical power of attorney or living wills
 Resuscitation
The nurse must recognize how her/his personal beliefs,
values, and expectations influence EOL care (Matzo et al., 2003).
 Fear of death, lack of experience , not knowing what to say,
unresolved grief, and disagreement with patient wishes
A nurse has an ethical responsibility to ensure everything
possible is done to provide a peaceful death.

33. Organ and Tissue Donation
Any part of the entire body may be
donated
Decision may be made prior to death but
family must consent at time of donation
Usually retrieved within a few hours after
death
Designated requestors at every hospital
McLean-Heitkemper 2011

34. Legal Documents:
Protect the Patient’s Wishes
Advance directives
 Written statements of medical care wishes
 Sometimes called a living will
Directive to physicians
 Patient’s desire to accept or deny treatment
Durable power of attorney for health care
 Lists the person to make health care decisions should a
patient become unable to make informed decisions for
self
McLean-Heitkemper 2011

35. Common Legal Documents
Do not resuscitate (DNR)
Orders instructing health care providers not to
perform CPR
 Often requested by family
 Must be signed by a physician to be valid
 Purple bracelet placed on client
 Push to change the term to allow natural death
(AND) to more clearly describe what occurs
McLean-Heitkemper 2011

36. Ethical Issues
Beneficence—To do good without causing harm.
 Give effective amounts of timely pain medication.
 Failure to give effective pain medication and adequate dosing
neglects the principles of beneficence.
Nonmaleficence—To “do no harm”. To refrain from causing
harm.
 Effective pain control that alleviates suffering in the
terminally ill.
 Under treatment of pain may be more harmful than the
presumed harmful side effects.
 Secondary effects that may hasten death are ethically
justified.
Bernhofer, 2011

37. Postmortem Care
After patient is pronounced dead the nurse prepares or
delegates preparation of the body
If death is in a semi-private room—move the other patient
out
Considerations when preparing body:
 Cultural and ritualistic practices
 Adherence to policies and procedures
 Close the patient’s eyes
 Replace dentures
 Wash the body as needed
 Remove tubes and dressings
 Straighten the body
 Leave a pillow in place to support the head
McLean-Heitkemper 2011

38. Postmortem Care
Immediate family viewing and saying final
goodbye
Family should be allowed privacy and as much
time as needed with the deceased loved one
Body may stay on the unit 2 hours
McLean-Heitkemper 2011

39. Special Needs of the Nurse
Recognize what can and cannot be
controlled
It is appropriate to cry with the patient and
family during the grieving process
Care for the dying is emotionally
challenging for everyone involved
It is common for nurse to feel helpless and
powerless
Feelings of sorrow, guilt, and frustration
need to be expressed
McLean-Heitkemper 2011

40. Nursing Management
Nursing Diagnoses: Psychosocial
Acute/ chronic confusion
Compromised family coping
Death anxiety
Disturbed thought processes
Spiritual distress
Ineffective denial
Interrupted family processes
Insomnia

41. Nursing Management
Nursing Diagnoses: Psychosocial
Fear
Grieving
Hopelessness
Impaired religiosity
Impaired social interaction
Impaired verbal communication
Ineffective coping
Readiness for enhanced spiritual
well-being
Risk for loneliness
Social isolation

42. Nursing Management
Nursing Diagnoses: Physical
Acute/ chronic pain
Bowel incontinence
Constipation
Decreased cardiac output
Diarrhea
Impaired tissue integrity
Impaired urinary elimination
Ineffective airway clearance
Impaired physical mobility

43. Nursing Management
Nursing Diagnoses: Physical
Fatigue
Imbalanced nutrition: less than body requirements
Impaired bed mobility
Impaired comfort
Impaired gas exchange
Impaired oral mucous membrane
Impaired skin integrity
Impaired swallowing

44. Nursing Management
Nursing Diagnoses: Physical
Ineffective breathing pattern
Ineffective thermoregulation
Ineffective tissue perfusion
Nausea
Risk for aspiration
Risk for infection
Risk for injury
Self-care deficit
Total urinary incontinence

45. Resources
American Cancer Society (http:/www.cancer.org)
National Hospice and Palliative Care Organization
(http://www.nhpco.org)
Hospice and Palliative Nurses Association
(http://www.hpna.org)
Oncology nursing Society (http://ons.org)
Journal of Supportive oncology: Quality of Life/Symptom
Management/Palliative care
(http://www.supportiveoncology.net)
End of Life Nursing Education Consortium From the
American Association of College of Nursing
(http://www.aacn.nche.edu/elnec/curriculum.htm)

46. References
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based guide to planning care. Mosby.
American Association of Colleges of Nursing. (2004). Peaceful death:
Recommended competencies and curricular guidelines for end-of-life nursing
care. Retrieved from
http://www.aacn.nche.edu/Publications/deathfin.htm
Bernhofer, E. (2011). Ethics: Ethics and pain management in hospitalized patients.
The Online Journal of Issues in Nursing, 17(1). doi:
10.3912/OJN.Vol17No01EthCol01
Cramer, C. F. (2010). To live until you die: Quality of life at the end of life. Clinical
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Education Consortium Curriculum and teaching strategies. Journal for Nurse
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47. References
McLean-Heitkemper, M. (2011). Palliative care at the end-of-life. In S. L. Lewis, S. Ruff-
Dirksen, M. McLean-Heitkemper, L. Bucher, & I. M. Camera (Eds.), Medical-
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World Health Organization. (2012). http://www.who.int/cancer/palliative/en/