This document provides information on caring for patients at the end of life. It discusses common symptoms that occur as multiple organ systems start to fail, known as the convergence of symptoms. The seven most common symptoms in active dying are identified as pain, shortness of breath, secretions, decreased oral intake and hydration, changes in consciousness, circulatory dysfunction, and delirium. Strategies are outlined for managing each symptom, such as using opioids for pain and shortness of breath. Terminal agitation, its potential causes, and treatment options are also reviewed. The document emphasizes the importance of communicating with families during the dying process and providing a smooth passage for both the patient and loved ones.

1. Supplemental Ethics Points

2. DE Hierarchy of Decision-makers
(If no POA-HC)
1. The spouse, unless a petition for divorce has been filed
2. An adult child
3. A parent
4. An adult sibling
5. An adult grandchild
6. An adult niece or nephew
 Disqualified if pt. has a PFA or “no contact” order
 If no one, Court of Chancery may appoint as guardian an adult who
exhibits special care +concern, + who is familiar w/ patient's values.

3. Do we need the Principle of the Double Effect
to justify giving morphine at end-of-life?
– NO
– “Double Effect” is when there are 2 known, expected effects,
one good and one bad. (ex. Separating conjoined twins where
one will die)
– Morphine at end of life (at appropriate doses)
 does not cause respiratory depression.
 is not a meaningful factor in hastening death (many studies)
– So, we do not hasten death by treating pain or shortness of
breath with appropriate doses of opioids. (see handout)

4. Living Wills are inadequate
• Only 36% of Americans
have a living will
• L.W’s often not
available when needed
• Uncertainty about
“qualifying conditions”
• DNR orders based on
L.W.’s are not portable

5. TRADITIONAL ETHICS ETHICS OF CARE
 Autonomy
• Interdependence
 Beneficence
• Preventing Harm
 Non- • Providing Care
Maleficence • Communication
 Justice • Maintaining
Relationships
 Veracity

6. Feminist writers:
Tong, Gilligan, Prendergast
 “Autonomous Man”
 vs.
 “Communal
Woman”

7. CARE AT THE END OF LIFE:
One Chance
to Do It Right
Presented by: Sheila Grant, BSN, RN, CHPN

8. DISCLOSURES
• I am employed by Heartland Hospice, IV, and Homecare as a
Nurse-Liaison.

9. OBJECTIVES
1—Describe the concept “Convergence of Symptoms”.
2—Identify 7 common symptoms of the active phase of
dying.
3—Identify strategies for controlling each of those
symptoms.
4—Describe ‘terminal agitation”, its possible causes,
and options for treatment.
5—Explain the principles of communicating bad news.

10. Most People Die
 Aftera prolonged
illness
 Withgradual
deterioration
 Withan active
dying phase at
the end of life

11. MOST CLINICIANS
Have little or
no formal
training in
managing
the dying
process.

12. Most Families
Have even
less
experience
or knowledge
of the dying
process.

13. FAMILIES WILL REMEMBER
A “good death”
OR a “difficult
death”.
A difficult death
may lead to
anger,
depression, or
complicated
grief

14. CARE PROVIDED DURING THE LAST DAYS
 Affects not just
the patient, but
families and
everyone
involved in a
patient’s care.
THERE IS NO SECOND CHANCE TO GET IT RIGHT

15. of Symptoms
 No matter what disease the person is dying
from, the symptoms begin to look the same
in the final stage.
 The failure of one organ system affects all
the others. [“multi-system organ failure”]
 In the final stage, you will treat the symptoms
(for comfort), NOT the disease (for cure).

16. Concerns in the last hours of life
 Pain
 Shortness of Breath
 Secretions
 Feeding and hydration
 Changes in
Consciousness
 Circulatory dysfunction
 Delirium

17. PAIN
You may need to change the route and dose of
pain medicine, due to increased pain, inability
to swallow, or decreased metabolism.

18. LIQUID MORPHINE (Roxanol)
 Often used in the last few days or when
patient is unable to swallow pills.
 Partially absorbed by mucous membranes in
the mouth.
 Begins to relieve pain/SOB in about 15-20
minutes.

19. PAIN MEDICINE IS BEST GIVEN
ATC, not PRN
If allowed to
wear off, pain
becomes harder
to treat,
requiring higher
doses.

20. P.O Narcotics Peak in 1 hour
Half-life is
4 hours

21. Respiratory Depression + Opioids
 Normal adult Resp. Rate = 12-20 [count for 60 sec.]
 Respiratory depression ONLY occurs with the first
few doses of an opioid and with new increases in
dose. Tolerance to Resp. Dep. occurs quickly.
(stable dose w/RR>12—OK to give dose)
[Source: EPEC Pain Module]

22. Fact: Morphine Toxicity
Occurs in this sequence:
1. Drowsiness
2. Confusion
3. Loss of consciousness
ONLY after these will you see:
4. Respiratory drive significantly compromised
* If patient is AWAKE and COMPLAINING—OK to
give pain medicine.

23. GOAL is steady pain relief—don’t
skip doses without a good reason.
When judging whether to hold dose, consider:
 New or recently increased dose?
 Is patient difficult to arouse?
 Is Resp. rate < 12 ?
 If yes, hold the dose. If no, give the dose.

24. HOSPICE NURSES
 Are expert in
managing opioids for
pain relief
 Have access to
Hospice Medical
Director
 Can be a resource

25. *FENTANYL PATCH—
NOT recommended at end-of-life
 Pt’s. may not have enough SQ
fat stores to absorb the drug.
 Poor absorption due to changes
in circulation and metabolism.
 Rapid titration often necessary
as pain levels and LOC change
at the end of life. Patch takes
about 18 hours to reach peak
levels.

26. DYSPNEA—SOB
 Increased respiratory
rate
 Then, decreased rate
 Apnea
 Cheyne-Stokes
breathing
 Agonal breaths

27. CHEYNE-STOKES BREATHING

28. If Patient Is Actively Dying w/ SOB
 Avoid using an O2 mask (comfort)
 Nasal Canula O2 may help
 Fan may help, blowing air toward pt’s. face
 Morphine is drug of choice for “air hunger”
 Lorazepam, if anxiety is present

29. SECRETIONS
 Due to oral and
tracheal secretions
 Gurgling (“death rattle”)
 No sign that this
bothers the patient
 DEFINITELY bothers
those listening
 Suctioning is NOT
recommended

30. TO DRY UP EXCESS SECRETIONS,
GIVE:
• Hyoscyamine
(Levsin) or Atropine drops
• Transdermal Scopolomine
(Scop patch)
• Also, try repositioning the
patient
*All 3 equally effective in a recent comparative study, but
Scopolamine takes 24 hrs. to reach steady state.

31. Decreased P.O. Intake
 Decreased appetite,
weight loss, wasting,
weakness
 Decreased fluid intake,
dehydration,
hypotension, dry mouth

32. Decreased P.O. intake is normal at
end-of life.
 Doesn’t bother patients.
 They DO complain of dry
mouth. Treat with frequent
mouth care.
 Educate families regarding
decreased P.O. intake—
Normal at end-of-life.

33. CHANGES IN CONSCIOUSNESS
 Drowsiness
 Difficulty
Awakening
 Unresponsive
to stimuli

34. CIRCULATORY DYSFUNCTION
 Cardiac
– Tachycardia
– Hyper/Hypotension
– Peripheral cooling and cyanosis/mottling
 Renal
– Dark Urine (tea-colored)
– Oliguria (<400 ml./day)/ Anuria
 EDUCATE FAMILY—Normal / No treatment needed

35. DELIRIUM—treat w/benzos, haldol, etc.
Symptoms:
– Confusion,
day/night reversal
– Agitation
– Purposeless,
restless
movements
– Moaning
– Acute onset

36. Terminal Agitation
Checklist
 Medication review (polypharm.,
toxicity, side effects?)
 Hx/ of substance abuse?
 Retention or urine/stool?
 Signs of fever or sepsis ?
 Dyspnea ?
 Assess pain/suffering

37. Non-Physical Causes of T.A.
 Fear/Anxiety…… IDT can offer support, treat
cautiously w/anxiolytics, consider
music tx., therapeutic touch
 Environment…… Reduce stimuli, involve familiar
faces @ bedside, consider
aromatx.
 Severe mental
anguish…………. If recovery is impossible and

death is near, consider terminal
sedation

38. TWO ROADS TO DEATH
 The usual road--easy
– Sleepy
– Lethargic
– Semi-comatose
– Death

39. The DIFFICULT ROAD
 Restless
 Confused
 Hallucinations
 Delirium
 Myoclonic jerks,
seizures
 Comatose
 Death

40. PROGNOSIS AT END-OF-LIFE
 Very difficult to be precise
 Better to give a general
estimate (“days to weeks”)
 Always remind patients &
families of the
unpredictability of the
dying process.

41. Unconscious Patients Near Death
 May still hear, even if
they can’t respond.
 Advise caregivers and
family members to
talk to the patient as if
he/she were
conscious.

42. WHEN DEATH OCCURS
 Heart stops beating
 Breathing stops
 Pupils become fixed and dilated
 Skin color becomes pale and waxen
 Body temperature cools
 Urine and stool may be released
 Eyes may remain open
 Jaw may fall open
 Observers may hear trickling of internal fluids, even
after death.

43. FAMILY MEMBERS OR CAREGIVERS
 May want to spend time
with the body after the
death
 A peaceful environment
may facilitate grieving,
so. . .
 Staff should take time
to position the body,
remove tubes,
disconnect machinery,
and clean up any mess

44. LOVED ONES
May benefit from a recounting of events leading
up to the death.
Staff may be able to help families understand
and “frame” the events.
Families may need time alone with the body, or
to observe customs & traditions.

45. Communicating the Bad News
1—Get the setting right
2—Provide a “warning
shot”
3—Tell the news
4—Respond to emotions
with empathy
5—Conclude with a plan

46. Remember . . .
We have only ONE CHANCE to get it right.

47. Your Expertise Can Provide a Smooth
Passage for the Patient and Family

48. HOSPICE can HELP by offering
 Expert symptom control
 Education and support for your staff
 Psycho-social support for pt. and family
 Spiritual care
 Volunteer services
 Bereavement care for 13 months or longer
 Coverage for medications and equipment

49. QUESTIONS/STORIES?