Marriage Certificate in Spanish by fml90894

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									 Ethics and Law in
Palliative Medicine
        AMSA
   Horizon Hospice
       7/6/04
    I. Ethics and Law

Not the same thing!

Ethics informs law

Ethics may challenge bad laws



                                2
Common to both Bioethics, EOL
 Legislation and and Palliative
             Care...
 Technology
 Cure > comfort
 Diminished family, social, religious
  support


                    David Barnard, 2000


                                          3
Common to both Bioethics, EOL
 Legislation and and Palliative
             Care...
Emphasis   on patient
 autonomy
Emphasis on intent



                                  4
Limits of legal proceedings

  Court is awkward place to resolve
   deeply personal issues
  Notoriously slow
  Expensive




                                       5
Limits of legal proceedings

  Therefore,statutory law
  often lags behind
  understanding and practice



                               6
Options better than court :
  Skilled and caring
   communication
  Physician leadership
  Ethics committee




                              7
II. Nuts and Bolts of Ethics in
       End-of-Life Care
     Advance Directives
 Empowers individual to name a “Power
  of Attorney”, and…
 Specify choices about medical
  interventions




                                         9
       Advance Directives
         State of IL
    Example:
    –Document available on
     line
    –Need witness, but not
     notary nor lawyer

                             10
Advance Directives: Mrs. L:
   65 yo with E/S liver failure and
    metastatic breast cancer. AD named her
    willing son as her surrogate. Rapid
    deterioration. In discussion with her
    son, all consulting HCP agreed:
    Hospice/palliative care is optimal
    choice.



                                         11
Advance Directives: Mrs. L:
   One problem: “I want my life to be
    prolonged and I want life-sustaining
    treatment to be provided or continued
    unless I am in a coma which my
    attending physician believes to be
    irreversible, in accordance with
    reasonable medical standards at the
    time of reference. If and when I have
    suffered irreversible coma, I want life-
    sustaining treatment to be withheld or
    discontinued.”

                                               12
       Advance Directives
 AD  empowers individuals
 Duty to search them out and
  follow them
 Best practice: pt discusses
  choices, nuances with
  surrogate
 Also, discuss with doctor

                                13
 When AD doesn’t exist
 Many states legislate
 hierarchy of surrogates

In Illinois: guardian, then spouse,
then adult child, then sib…down to
close friend


                                      14
    Informed Consent
 Autonomy is foundational
 “Sovereignty”; “self-rule”




                               15
    Informed Consent
   Contents:
    – What “average patient” would want, plus: -
    – More, per patient’s request

    – Risk, benefits and...

        OUTCOMES of options and
        alternatives
                                               16
Informed Consent
  Voluntary
  No coercion



    Patient has as much right to refuse
     as to consent

    Patient has a right to make a poor
     decision
                                           17
Informed Consent
    Doctors have a right –perhaps
     a duty –to attempt persuasion
     in some cases?




                                     18
        Informed Consent
   Documentation is important, but...

…the relationship of a signed consent form
to authentic “consent” is akin to the
relationship of a marriage certificate to a
marriage.



                                          19
When a patient gives away
    right to consent:
O
•verwhelmed
C
•ulturally appropriate




                            20
  When a patient cannot
        consent:

           capacity to
Insufficient
 make medical
 decisions


                          21
          Capacity
“Competence” tends to be legal term
•

A
•ny physician can determine
capacity: communicate
            risk/benefit
               outcomes
                     choice c/w values

                                         22
              Capacity



Stringency




             Gravity     23
   Does the patent have
        capacity...
 To choose dinner?
 To refuse a flu shot?
 To name POA?
 To sign on with hospice?
 To refuse life-saving
  interventions?
                             24
       Does the patent have
            capacity...
   Mrs. A refuses to have her gangrenous foot
   removed...
“I’ve lived a long life, I have end-stage cancer,
and I want no more surgery!”
    “I’m a good Catholic, and I know that my
    religion would prohibit amputation.”
          “There’s nothing wrong with my
          foot!”

                                                    25
Who speaks for the patient
   without capacity?
 Advance directives let you speak for
 yourself, through your choice of
 surrogate (POA).
 Illinois Health Care Surrogate Act
 chooses for you:
      legal guardian
      spouse
      adult children...                 26
The patient without capacity
   and without AD/POA

   90 yo Mr. G arrived in the ED, delirious.
    Simple IVFs and Rx for UTI failed to
    bring him around. No family or friend
    could be found. “Let me die” is all he
    would say. Refused to eat. Abdominal
    mass on exam. All 4 consultants say
    “PC/H is optimal means of care.”

                                                27
Who speaks for the patient
   without capacity?


While law typically considers a minimal
legal standard, ethics goes beyond to
consider any communication of an
advance directive.



                                          28
    A surrogate’s duty to the
    patient without capacity:
 Acts as if s/he were the patient
 Uses AD as guidelines
 Substitutes judgment


   Physician’s role: shared decision making



                                           29
When a surrogate speaks for
the patient without capacity:
 Varying state laws may impose greater
  burden upon decisions by surrogate to
  withhold or withdraw
 Physician may be called upon to
  advocate for patient if surrogate is not
  acting in best interests


                                             30
Speaking for the patient without
           capacity


  1. Mr. F is dying of esophageal cancer. He has
  recently migrated from Mexico, and speaks
  only Spanish. His daughter, fluently bilingual,
  explains that in his village, it was offensive to
  speak about end of life issues. She dearly
  loves her papa, wants the best for him, and
  therefore wants to admit him to hospice. He‟ll
  be happy to sign anything she asks him to.
                                                      31
Speaking for the patient without
           capacity

2. Mrs. C, who had an advance directive naming her
son as POA, was admitted to hospice while comatose
after a stroke. To everyone‟s surprise, she‟s waking
up a bit, and asking questions. Her long term
prognosis remains poor, and Hospice remains a good
plan for her. Her son takes you aside and says,
“Whatever you do, don‟t tell my mom she‟s in a
hospice program”

                                                 32
Speaking for the patient without
           capacity

  3. Mrs. L, a home hospice pt, has end-stage
  metastatic breast cancer. She is poorly
  responsive, grimacing and moaning. The
  clinical impression is accelerating pain, and the
  recommendation is rapidly titrated opioids.
  Her husband objects: “You‟ll either kill her or
  make her an addict!”


                                                      33
Speaking for the patient without
           capacity

  4. Mr. V has been obtunded for 5 months after
  closed head injury. He is vented and fed by G
  tube. His skin is breaking down, and he moans
  whenever he is repositioned. He left no advance
  directives, and his daughter is his next-of-kin
  surrogate. She says, “It‟s awful to see him like
  this, and I know he never would have wanted it
  this way, but I just can‟t bring myself to „pull
  the plug.‟”
                                                     34
Withholding and Withdrawing
     Withholding and
 Withdrawing:Legal Myths
 If not specifically permitted, must be
  illegal
 Termination is murder or suicide
 Terminal illness required for termination
 “Extra”- versus “ordinary”
 Once started, can’t stop
 Tube feeds are different from other
  stoppable measures                      36
    Ethical considerations
 Proportionality
 Autonomy
 The rationale for withholding is
  ethically identical to withdrawing
 Supported by law
 Intention is important both in ethics
  and in law
                                          37
    Three Broad Perspectives
   “Vitalism”
    – preserve at all costs
   “Sanctity/Inviolability”
    – cannot kill, but not required to preserve at all
      costs
    – proportionality
   “Quality”
    – Threshold below which life is not worth living


                                                         38
          A taxonomy:
 CPR
 Ventilation
 Surgery
 Dialysis
 Antibiotics
 Oxygen
 AFN
                        39
     WH/WD: case study
Mr.E, 79 year old man with end-stage AD,
entered NH several yrs ago after his wandering
became dangerous and his family could no
longer care for him. He‟s gradually become less
ambulatory and has become less interested in
eating. Occasionally he chokes, suggesting he‟s
aspirating. The DON suggests to the family that
a feeding tube would be helpful


                                                  40
AFN: feeding tubes in AD
   Goal is “Keep my dad comfortable”
    – nutritional status not routinely improved
    – aspiration not prevented
    – longevity not increased
    – pleasure not enhanced
    – can of itself be a burden
          restraints

                                                  41
 AFN: feeding tubes in AD
 Alternative   view:
  – inanition is marker of end-stage
    dementing process
  – diminished ability to thirst also
    anticipated marker
  – hand feeding titrated to pt’s
    desires promotes “community”
                                        42
  Physiology of inanition
 Calories:
  – gluconeogenesis to fat
    metabolism
  – ketosis: appetite suppression,
    analgesia, euphoria?



                                     43
    Physiology of volume
          depletion
 Orthostatic        BP changes
 Dry   mouth
  – thermo/mechanorecptors
One realistic positive effective of hydration
might be reversal of delirium



                                                44
    AFN: loaded language
 “Starve to death”
 “Dehydrate”
 “Food”, “Feed”




                           45
    AFN: helpful language
 Differentiate artificial from normal
  eating
 Consider experience of fasting vs.
  dieting
 Dry mouth versus fainting from low BP

    Decision may be not about when death will
    occur, but from which process
                                                46
           WH/WD AFN
   Mr E’s family chooses to continue to
    feed him small amounts by hand, as
    tolerated and enjoyed. They all enjoy
    these opportunities for connection. In 6
    months, he dies quietly in his sleep.




                                           47
      WH/WD: Case study
   Mr. K has widely metastatic cancer, and
    has been in a nursing home, vented, for
    3 months. Hospice care is requested by
    the family who state that it’s time for
    dad to come off of the vent.




                                          48
    CPR in End of Life Care
 Physiologically, it rarely works
 Non-medical people get info from TV
 DNR is NOT prerequisite for hospice
 Most families/pts opt for DNR over time
 Can a doctor ever say “no”?




                                        49
                 “Futility”
   “Science-determined”
    – Antibiotics for viral illness
   “Normative futility”
    – subjective
    – clash of values
             In the “normative” sense,
             NOT a helpful term
                                         50
    Futility : Clash of Issues
 Minority or family culture
 Scientific positivism: “false hope in a
  bottle”




                                            51
   The perceptive chaplain realizes
    that the patient is trying to
    communicate, works with him, and
    concludes that he has full capacity
    to make medical decisions. He
    states he decidedly does NOT want
    to be extubated

                                      52
   When the chaplain reports this to the
    referring attending, director of nursing,
    and the family, they all tell him to quit
    asking questions and get on with it.




                                                53
                  PAS
   1997 Supreme Court:
    – No right to assisted suicide, but:
   Open to state’s individual legislation
    – Legal in Oregon only
   Affirmative of aggressive end of life
    care


                                             54
Requests for assistance with
    suicide in the dying
 Needs careful, non-judgmental,
  supportive exploration
 Often reflects distress that can be
  addressed
    – Depression
    – Loneliness, isolation
    – Spiritual

                                        55
Requests for assistance with
    suicide in the dying
   Persistent requests
    – Infrequently reflect distress about somatic
      symptoms
    – More often, reflect existential distress




                                                    56
How to respond: a physicians’
          dilemma
 Non abandonment
 “First do no harm”
 Protect the vulnerable
 PAS as civil disobedience




                                57
“Oregon Death with Dignity Act”
            Data
  Legal since 1997
  About 0.7% deaths, slowly increasing
   over time
  Requests more common from
     – Educated
     – Younger
     – Unmarried

                                          58
“Oregon Death with Dignity Act”
            Data
    Patient concerns reported:
     – Autonomy
     – Diminished participation in life
     – Diminished dignity
     – Perception of being a burden




                                          59
“Oregon Death with Dignity Act”
            Data
  More per capita hospice
  More per capita morphine




                                  60
Sedation at the End of Life
 Most Common: Self-induced
 metabolic coma




                              61
Sedation at the End of Life
 Also common: Self-induced
 metabolic coma plus centrally-
 acting medications
 Inadvertently induced when
 medications with sedating side effects
 are given in large doses.


                                          62
Intentionally Induced Sedation
      at the End of Life
  Less common
  “Sedation of the imminently dying”
  Treatment for intractable symptoms
     – Delirium
     – Dyspnea
     – (pain)


                                        63
Intentionally Induced Sedation
      at the End of Life
   – Presumption: sedated pt who appears
     comfortable has fully controlled symptoms
   – Typically, fast acting titratable IV/SQ
     medication such as Midazolam (Versed)




                                                 64
 Typical Patient Receiving
Sedation at the End of Life
 Death anticipated in hours to days
 Not eating or drinking much, if at all
 AFN already precluded
 “If left alone, would die of exhaustion”
 Often said to live longer




                                             65
   GR was a 19 yo woman with end-stage
    medullary thyroid cancer. Terrible “total
    body pain” from mets, plus severe
    delirium. Rapidly titrated doses of
    opioids and antipsychotics only partially
    controlled distress. She continued to
    moan and thrash. Versed was added to
    induce sedations. She died peacefully
    two days later.
                                            66
   Dr O had E/S ALS. Unable to lie down
    w/out respiratory compromise.
    Requested sedation such that he could
    lie down, sleep, and die comfortably.




                                            67
    Sedation Toward Dying
 Controversial
 Target symptom:
    – existential, weariness, loss of control
 Perhaps weeks to months (years?)
  away from death
 May be eating and drinking
 Death ensues in days to weeks

                                                68
   Mr. L has late-, but not end-stage ALS.
    He is not depressed but “hates” his
    existence. His doctor offers the
    induction of a barbiturate sedation,
    during which the artificial feedings will
    be discontinued


                                                69
    Sedation Toward Dying
   “Palliative option of last resort”?
    – A legal means of physician assistance for a
      pt who is ready to die; autonomy.
   “Too close to VAE”?
    – Intentional physician contribution to death
    – Easy to abuse
    – There exist some symptoms that medicine
      cannot treat
                                                    70
“Only the cavalier or the uninformed would
approach sedation for psychosocial anguish
with them same equanimity as for
unresolved physical suffering.”


  Balfour Mount
                                         71
 Obligation is to “go wherever your
  patient takes you” - solidarity
 Patient autonomy is highest good




                                       72
     Eating and drinking
 Typically, individuals have diminishing
  interest or overt nausea/vomiting
 Cachexia of cancer may waste pts
  despite decent po intake




                                            73
Voluntary Stopping Eating and
       Drinking (VSED)
   Mr. L has late stage MS - 1-2 yrs
    survival possible. He is demoralized but
    not depressed, and requests that
    hospice care for him while he goes on a
    fast unto death.




                                           74
 Provide excellent palliative and hospice
  care for ALL
 Advocacy in public policy
 Ethics:
    – Reinforce that which we know
    – Explore the envelope before we push it


                                               75

								
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