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Ethics At the End of Life

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Ethics At the End of Life Aaron Kheriaty, MD Assistant Clinical Professor UC, Irvine, Dept. of Psychiatry I am not advocating That extending life at all costs ... – PowerPoint PPT presentation

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Title: Ethics At the End of Life


1
Ethics At the End of Life
  • Aaron Kheriaty, MD
  • Assistant Clinical Professor
  • UC, Irvine, Dept. of Psychiatry

2
Certain and Necessary
  • As soon as a person is born, it must at once
    and necessarily be said He will not escape
    death. Of all things in the world, only death is
    not uncertain.
  • -Augustine

3
Objectives
  • Social/Cultural
  • Identify current social and cultural attitudes
    toward aging dying
  • Influence end-of-life decision making
  • Explore ways to address patients fears and
    concerns during the final stages of life
  • Ethical
  • Outline foundational principles, values, virtues
    of medical ethics
  • Application to difficult end-of-life decisions
  • Clarify ethical distinctions that may inform
    medical care for end-of-life patients

4
Aging, Death, Dying
  • Current Social and Cultural Trends

5
Aging Society Demographics
  • By 2050
  • 45 to 64 years old
  • increase 40 (61 to 85 million)
  • 65 and older
  • more than double (34 to 79 million)
  • 85 and older
  • more than quadruple (4 to 18 million)
  • We are on the verge of becoming a mass geriatric
    society (unique in human history)

6
Cultural Trends Modern Western Society
  • American Individualism
  • Autonomy, self-reliance
  • Cult of youth
  • Anti-aging industry
  • Recent study fears of aging highest in worlds
    wealthiest countries
  • Technological control
  • Power to alter circumstances of life
  • External (environment)
  • Internal (our self)
  • Medical advances
  • Longer lifespan
  • Cures for acute illnesses
  • Chronic illness old age
  • Distance from death
  • Sanitized out of home (1900) into hospital
    (2000)
  • Facilitates denial of death (E. Becker, 1974)
  • Psychological refusal to acknowledge mortality
  • Medical language (e.g., patient expired)

7
Demographic Cultural Changes
  • Taking Care Ethical Caregiving in Our Aging
    Society
  • Presidents Council on Bioethics
  • Due to aging population
  • Looming crisis of dependency among elderly
  • Response so far
  • Technological, number-crunching
  • Programs for healthy aging
  • Medical research for remedies (e.g., Alzheimer's)

8
Taking Care
  • In so far as we do approach the topic of
    long-term care, we worry mainly about numbers and
    logistics How many will need it? Who will
    provide it? How will we pay for it? The ethical
    questions of what the young owe the old, what the
    old owe the young, and what we all owe each other
    do not get mentioned.
  • -Leon Kass, Chairman

9
Alzheimers Illustrative Case
  • Half of people over 85 will suffer some degree of
    dementia
  • Alzheimers most common form
  • Increasing incidence due to aging population
  • Disease symbol of frightening burdens
  • Old age and dying
  • Fear of being dependent ourselves on others
  • Fear of having others dependent on us

10
Dependency and Disability
  • In an Aging Society

11
Dependence Life History
  • Common fear w/ aging
  • Becoming a burden on others (dependence)
  • Dependency undignified?
  • Life always begins in dependence
  • Preborn, newborn
  • Young child
  • Life often ends in dependence
  • Old age and sickness
  • Loss of capacities
  • 1st Principle Human dignity personhood
  • Not something we have at some points in our
    life
  • Remain persons with dignity throughout our whole
    life

12
Dependency/Disability
  • Not categorical
  • E.g., like pregnancy
  • Dimensional Scale of disability on which all
    fall
  • Matter of more or less
  • Different periods of our lives, different points
    on scale
  • When we pass from one point to another
  • Remain same individual we were before making
    transition
  • Do not lose our personhood, dignity, or basic
    rights
  • Human dignity is given (not granted)
  • can be respected, or violated

13
Dependence Modern Views
  • Modern Psychiatry
  • Typically understands dependence in pathological
    terms
  • Dependent personality disorder
  • Co-dependent couples
  • Modern Philosophy
  • Self sufficiency superior to dependency
  • Moral philosophy emphasizes
  • Individual autonomy
  • Capacity for making independent choices
  • But, emphasis is too one-sided

14
ExaggeratedFears of Dependence in Old Age
  • Failure to recognize
  • Extent of dependence throughout lifespan
  • Illusion of total control, complete autonomy
  • Fostered by technological advances
  • Individualistic cultural attitudes
  • Devalue social ties, mutual solidarity
  • Realities of aging population
  • May help correct one-sided values
  • Foster acceptance of care
  • Encourage social solidarity

15
Aging, Dependency, Disability
  • Typically think of disabled as
  • Them, as other than us
  • Special class
  • Separate interest group
  • Disabled actually us
  • As we have been
  • As we sometimes are now
  • As we may well be in the future

16
Needs of the Disabled or Incapacitated
  • We all lie on a scale of disability
  • Interest in meeting needs not a special
    interest
  • Interest of the whole society
  • Interest in promoting the common good
  • Even severely disabled are not outsiders
  • But rather, weakest or most vulnerable members of
    our community

17
Lessons to Learn from Aging/Dying
  • What do dependent/disabled (e.g., Alzheimers)
    patients have to teach us?
  • What it means for someone else
  • To be wholly entrusted to our care
  • Such that we are answerable for their well-being
  • Caring for severely disabled opportunity
  • Learn what we owe our own caregivers
  • Role of proxy and advocate
  • Speak for those who cannot speak for themselves

18
Medical Ethics and End-of-Life Decisions
  • Basic Principles

19
End-of-Life DecisionsAnxiety
  • Patients/family members often ambivalent
  • afraid of making wrong decision
  • Physicians sometimes uncertain
  • what to do in borderline cases
  • Case of conversion disorder in ER
  • Provoked by anxiety of decision, cured by
    reassurance
  • Sound ethical criteria can help guide us

20
Foundational Ethical Principles
  • Collective medical/moral wisdom
  • Should not directly aim at or intend death
  • of healthy, sick, or already dying person
  • Sometimes, ethically justified to withhold or
    withdraw potentially life-extending medical
    treatments
  • Even though patient may consequently die more
    quickly
  • Is this not aiming at or intending death?

21
Key Distinction
  • When we withhold/withdraw treatment
  • Aim to dispense with treatment, not with persons
    life
  • Need not always do everything to insure longest
    possible life
  • Wear helmets when playing soccer
  • Not allow cars on the road
  • Our decisions may hasten death (powers limited)
  • Does not imply aiming at death
  • Do not embrace death as good in itself

22
Ethical Criteria Withholding/Withdrawing
  • When can person refuse potentially
    life-prolonging treatment
  • Without aiming at or intending death?
  • When treatment judged to be
  • Useless
  • Futile will likely not achieve intended results
  • Excessively burdensome to the patient
  • Little expected benefits, high burdens/risks

23
Useless/Burdensome Treatments
  • Ethical jargon extraordinary (vs. ordinary)
  • or disproportionate (vs. proportionate)
  • Refusing useless treatment
  • Not choosing death, but choosing another sort of
    life
  • Refusing excessively burdensome treatment
  • Not rejecting life as such, but life with added
    burdens of low-yield interventions
  • Choosing not death, but one of several possible
    lives open to us
  • Even if a foreshortened life

24
Key Distinctions
  • Useless or burdensome
  • Refers to potential treatment or intervention
  • Does not refer to value of patients life
  • If I choose not to treat because I believe
    patients life is useless (e.g., to society) or
    burdensome (e.g., to her family)
  • Then I reject not a treatment, but a life
  • Ethically unacceptable

25
Key Questions
  • Right question
  • How can I benefit the life this patient has?
  • Answer may be very little, medically
  • Though much can be done psychologically and
    spiritually
  • Wrong question
  • Is is a benefit to have such a life?
  • Judgments here will be inescapably arbitrary and
    unjust
  • Physicians not in a position to make such
    judgments

26
Ordinary/Proportionate Treatment
  • Not too painful, burdensome, expensive
  • Reasonable chance of working
  • Ethically obligatory
  • Pt has right to this duty not to reject it
  • To refuse may imply suicidal intention
  • Example psychiatric consult
  • Otherwise healthy young patient
  • Refusing insulin injections
  • Depressed, did not want to live (suicidal intent)

27
Extraordinary/Disproportionate
  • Excessively burdensome or useless
  • For given patient in particular circumstances
  • Acceptance/refusal prudential decision
  • Can justifiably be withheld or withdrawn
  • Does not imply
  • doctors intention to kill
  • or patients intention to die

28
Ordinary/Extraordinary
  • Judgment relative to
  • Individual patient
  • Particular circumstances
  • Not just feature of treatment itself
  • Same treatment can be proportionate in one
    circumstance, disproportionate in another
  • E.g., dialysis
  • Young ARF patient
  • vs. end-stage cancer patient

29
Food and Water (Nutrition and Hydration)?
  • First question
  • Medical treatment, or ordinary care?
  • If considered treatment, is it
  • Always ordinary?
  • In some circumstances extraordinary?
  • Useless?
  • Excessively burdensome?

30
Nutrition and Hydration Treatment or Care?
  • Treatment
  • Medical Act
  • Medications
  • Surgery/Procedures
  • Care
  • Natural means for preserving life
  • Shelter, Warmth
  • Turning to avoid bedsores
  • Cleaning wounds
  • In most circumstances
  • Food and water is natural means (care)
  • Aim is nourishment and sustenance
  • Aim is not alteration of disease process

31
Artificially Administered Nutrition and Hydration
  • Ethically considered care even when delivered
    artificially (e.g., Dobhoff tube)
  • End is the same sustenance/nourishment
  • Feeding tubes not high-tech
  • Small bore synthetic catheters
  • Simple to use, inexpensive, readily available
  • Not new
  • 1793, physician John Hunter tube fed patients who
    could not swallow

32
Refusal of Food and Water Ethical Considerations
  • Circumstances where food and water do not attain
    proper end
  • No longer provide nourishment and sustenance
  • True of spoon-feeding or tube-feeding
  • Artificial distinction irrelevant to moral
    criteria
  • Useless or excessively burdensome
  • Example Patient in process of dying
  • Organ systems failing
  • No longer absorb food or assimilate nutrition

33
ANH in Chronic Conditions (e.g., PVS)
  • Presumption in favor of ANH if patient not
    actively dying
  • Unless useless or burdensome
  • Typically ordinary care
  • On par with clean sheets, warm room, bed care
  • Not on par with medications, ventilator,
    dialysis, etc
  • ANH not useless in PVS when achieves its end
  • Nourishment
  • Sustenance
  • ANH not excessively burdensome in PVS
  • If pt experienced this as burden, then pt would
    not be diagnosed PVS

34
I am not advocating
  • That extending life at all costs is always
    imperative
  • That human life must be preserved at whatever
    cost to other human goods
  • That a dying person should not be allowed to die
  • That we are obligated to use all extraordinary
    means to keep dying person alive

35
I am advocating
  • That we should never aim at or directly intend
    death of fellow human being
  • whether by action or omission
  • That when we withhold or withdraw extraordinary
    treatments
  • We aim to dispense with the treatment
  • Because the treatment is useless or burdensome
  • We do not aim to dispense with the patients life
  • Because we judge the life to be useless or
    burdensome

36
Quality of Life Considerations?
  • Objection decision to end patients life should
    be on the quality of her life
  • Appeals to our empathy for patient
  • Imagine ourselves living with her disability or
    in her circumstances
  • This approach arises from legitimate fears
  • Fear that a person will be brutalized by
    technologys ability to sustain life
  • Fear of living a life of prolonged suffering

37
Quality of Life Discriminatory
  • From an outside perspective, impossible to judge
    the quality of life of another individual
  • Introduces a discriminatory principle into the
    practice of medicine
  • This patients quality of life is too poor, so
    we are not going to treat her in the same way we
    would treat another patient
  • Introduces a eugenic principle into society
  • Historical evidence devastating consequences

38
Quality of Life Slippery Slope
  • No universal standard to judge quality of life
  • May start with altruistic motives
  • But judgments will eventually be determined by
  • Economic pressures (cannot be ignored)
  • Political pressures (potentially disordered
    political system)
  • Arbiters of quality of life
  • Initially, patient, proxy, or physicians
  • Eventually, those with economic interests
  • Decision-making power open to abuses

39
Eugenics Recent History
  • German psychiatrist Alfred Hoche (1920) paper
    advocating euthanizing severely disabled
  • Life Unworthy of Life (Lebensunwertes Leben)
  • Phrase commonly cited in pre-Nazi Weimar Republic
  • Quality of life judgments dictated medical
    decisions
  • Physicians testimony Nuremburg trials revealed
  • Principle eventually led to gross abuses and
    atrocities
  • Medical experimentation
  • Involuntary euthanasia of those deemed unfit
  • Both in Weimar Republic and Nazi Germany

40
Hippocratic Paradigm
  • Into whatever houses I may enter, I will come
    for the benefit of the sick -Hippocratic Oath
  • Physicians placed at service of the individual
    sick person
  • Not an administrator of social resources or
    political programs
  • Not an agent of state power/authority
  • Mistake of Nazi physicians

41
Physician Assisted Suicide, Euthanasia
  • Intentionally causing death in order that
    suffering may be eliminated
  • Sometimes proposed as solutions to burdens of
    caregiving, suffering, or prolonged illness
  • Attempt at completely controlling death
  • Irony attempting to master very event that
    finally shows our lack of mastery
  • Self-contradictory exercising autonomy in order
    to eliminate autonomy

42
Ethics and Human Goods
  • Human life not merely instrumental good, but
    inherent good
  • Not something we have or possess
  • It is what we are living being
  • Our life is our person
  • Without life, we can possess no other goods
  • Precondition for all other human goods (grounding
    good)
  • Including goods of autonomy, independence,
    rationality, etc.

43
Human Life
  • Life is a good
  • Of the person
  • Not just for the person
  • To treat our life as a thing that we can
    authorize another to terminate is
  • To contradict/destroy every other human good
    (including our autonomy!)
  • Profoundly dehumanizing

44
Summary
  • Our task as physicians
  • When possible to cure
  • Always to care
  • Never to kill

45
Legitimate Fears
  • Rise of medical technology mixed blessing
  • People now fear they will be kept alive beyond
    what they can endure
  • Basic distinction between ordinary and
    extraordinary care should be retained
  • Otherwise will cross lines that lead to abuses
    and discrimination
  • If we refuse to give basic care or ordinary
    treatment,
  • Then we withhold things that every human person
    deserves

46
Physicians Role in Addressing These Fears
  • We do not live in a society where useless or
    burdensome care is typically refused
  • Mentality one more round of experimental
    chemotherapy
  • Do not want to give up hope
  • But we may unnecessarily subject people to
    useless treatments or excessive burdens
  • Must educate our patients (or their surrogate)
  • So that they can understand what they are
    accepting or rejecting

47
Limited Wisdom of Advanced Directives
  • Proponents initially solution to difficult
    problems (panacea)
  • Experience has proven otherwise
  • Lessons learned
  • Often ignored by physicians
  • Good reasons
  • Difficulty predicting complex medical
    circumstances
  • Impossibility of imagining oneself in disabled
    state

48
Advanced Directives Limitations
  • Best to keep to general principles values
  • Particular decisions best left up to surrogate
    (durable power of attorney)
  • Surrogate ideally close relative/friend who
    understands patient
  • Must work closely with physician, who does not
    abandon patient/surrogate during this time

49
What We Learn
  • We understandably want some control over life
  • Attempts to completely control life and death can
    become dehumanizing
  • Limits to medical technology
  • Useless/burdensome treatments need not be
    attempted
  • Never abandon care, even when cure is impossible
  • Limits to human autonomy
  • We are not sole author of story of our life
  • We are dependent rational animals

50
Aging and Dying
  • Against our confidence in mastery and control,
    we need to remember that old age and dying are
    not problems to be solved but human experiences
    that must be faced. In the years ahead, we will
    be judged as a people by our willingness to stand
    by one another, not only in the rare event of a
    natural disaster but also in the everyday care of
    those who gave us life and to whom we owe so
    much.
  • -Dr. Leon Kass, Washington Post article
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