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Supplemental Ethics Points
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
7.    Disqualified if pt. has a PFA or “no contact” order
8.    If no one, Court of Chancery may appoint as guardian an adult
      who exhibits special care +concern, + who is familiar w/ patient's
      values.
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)
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
TRADITIONAL ETHICS        ETHICS OF CARE



Autonomy
                     •   Interdependence
Beneficence
                     •   Preventing Harm
Non-                •   Providing Care
 Maleficence         •   Communication
Justice             •   Maintaining
                         Relationships
Veracity
Feminist writers:
Tong, Gilligan, Prendergast

 “Autonomous   Man”

 vs.


 “Communal
  Woman”
CARE AT THE END OF LIFE:

                           One Chance
                           to Do It Right


  Presented by: Sheila Grant, BSN, RN, CHPN
DISCLOSURES
•   I am employed by Heartland Hospice, IV, and Homecare as a
    Nurse-Liaison.
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.
Most People Die

 Aftera prolonged
 illness
 Withgradual
 deterioration
 Withan active
 dying phase at
 the end of life
MOST CLINICIANS


                  Have little or
                  no formal
                  training in
                  managing
                  the dying
                  process.
Most Families


Have even
 less
 experience
 or knowledge
 of the dying
 process.
FAMILIES WILL REMEMBER

A “good death”
OR a “difficult
death”.

A difficult death
may lead to
anger,
depression, or
complicated
grief
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
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).
Concerns in the last hours of life

 Pain
 Shortness    of Breath
 Secretions
 Feeding  and hydration
 Changes in
  Consciousness
 Circulatory dysfunction
 Delirium
PAIN

You may need to change the route and dose of
  pain medicine, due to increased pain, inability
  to swallow, or decreased metabolism.
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.
PAIN MEDICINE IS BEST GIVEN
ATC, not PRN


                If allowed to
                wear off, pain
                becomes harder
                to treat,
                requiring higher
                doses.
P.O Narcotics Peak in 1 hour


 Half-life is
 4 hours
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]
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.
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.
HOSPICE NURSES

                Are expert in
                 managing opioids for
                 pain relief
                Have access to
                 Hospice Medical
                 Director

                Can be a resource
*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.
DYSPNEA—SOB


           Increased   respiratory
            rate
           Then, decreased rate
           Apnea
           Cheyne-Stokes
            breathing
           Agonal breaths
CHEYNE-STOKES BREATHING
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
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
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.
Decreased P.O. Intake

 Decreased  appetite,
 weight loss, wasting,
 weakness

 Decreased fluid intake,
 dehydration,
 hypotension, dry mouth
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.
CHANGES IN CONSCIOUSNESS

 Drowsiness


 Difficulty
  Awakening

 Unresponsive
  to stimuli
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
DELIRIUM—treat w/benzos, haldol, etc.

Symptoms:
  – Confusion,
    day/night reversal
  – Agitation
  – Purposeless,
    restless
    movements
  – Moaning
  – Acute onset
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
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
 Severe mental
                  aromatx.
  anguish…………. If recovery is impossible and
                
                  death is near, consider terminal
                  sedation
TWO ROADS TO DEATH

              The   usual road--easy
               –   Sleepy
               –   Lethargic
               –   Semi-comatose
               –   Death
The DIFFICULT ROAD

     Restless
     Confused
     Hallucinations
     Delirium
     Myoclonic jerks,
      seizures
     Comatose
     Death
PROGNOSIS AT END-OF-LIFE

             Very   difficult to be precise

             Betterto give a general
              estimate (“days to weeks”)

             Always  remind patients &
              families of the
              unpredictability of the
              dying process.
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.
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.
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
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.
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
Remember . . .

We have only ONE CHANCE to get it right.
Your Expertise Can Provide a Smooth
  Passage for the Patient and Family
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
QUESTIONS/STORIES?

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Care at the end of life.wvamc version

  • 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 7. Disqualified if pt. has a PFA or “no contact” order 8. 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
  • 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  Severe mental aromatx. 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  Betterto 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