Ethics At the End of Life

Aaron Kheriaty, MD
Assistant Clinical Professor
UC, Irvine, Dept. of Psychiatry
Withdrawing
- Means to discontinue
treatment after it has
been started.
Withholding
- Means never starting
treatment.
 Many people believe both are
ethically wrong
 Patients have the legal right to
refuse treatment and food.
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
Objectives
 Social/Cultural  Ethical
 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
 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
 Aging, Death, Dying
Current Social and Cultural Trends
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)
Cultural Trends:
Modern Western Society
 American Individualism
 Autonomy, self-reliance
 Cult of youth
 Anti-aging industry
 Recent study: fears of
aging highest in world’s
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”)
Demographic & Cultural Changes
 Taking Care: Ethical Caregiving in Our Aging
Society
 President’s 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)
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
Alzheimer’s: Illustrative Case
 Half of people over 85 will suffer some
degree of dementia
 Alzheimer’s 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
Dependency and Disability
In an Aging Society
Dependence: Life History
 Common fear w/ aging  Life often ends in
 Becoming a burden on dependence
others (dependence)  Old age and sickness
 Loss of capacities
 Dependency
undignified?  1st Principle: Human
dignity & personhood
 Life always begins in  Not something we ‘have’
dependence at some points in our life
 Preborn, newborn  Remain persons with
 Young child dignity throughout our
whole life
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
Dependence: Modern Views
Modern Psychiatry Modern Philosophy
 Self sufficiency superior to
 Typically understands
dependency
dependence in
 Moral philosophy
pathological terms
emphasizes
 Dependent personality
 Individual autonomy
disorder
 Capacity for making
 “Co-dependent” couples
independent choices
 But, emphasis is too
one-sided
Exaggerated
Fears 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
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
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
Lessons to Learn from
Aging/Dying
 What do dependent/disabled (e.g., Alzheimer’s)
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
Medical Ethics and
End-of-Life Decisions
Basic Principles
End-of-Life Decisions:
Anxiety
 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
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?
Key Distinction
 When we withhold/withdraw treatment
 Aim to dispense with treatment, not with person’s 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
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
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
Key Distinctions
 “Useless” or “burdensome”
 Refers to potential treatment or intervention
 Does not refer to value of patient’s life
 If I choose not to treat because I believe
patient’s 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
Key Questions
 Right question…  Wrong question…
 “How can I benefit the  “Is is a benefit to have
life this patient has?” such a life?”
 Answer may be very  Judgments here will be
little, medically inescapably arbitrary
 Though much can be and unjust
done psychologically  Physicians not in a
and spiritually position to make such
judgments
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)
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
 doctor’s intention to kill
 or patient’s intention to die
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
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?
Nutrition and Hydration:
Treatment or Care?
Treatment In most circumstances
 Medical Act  Food and water is
 Medications natural means (care)
 Surgery/Procedures
 Aim is nourishment
Care
and sustenance
 Natural means for
 Aim is not alteration of
preserving life
 Shelter, Warmth disease process
 Turning to avoid bedsores
 Cleaning wounds
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
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
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
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
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 patient’s life
 Because we judge the life to be useless or burdensome
“Quality of Life” Considerations?
 Objection: decision to end patient’s 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
technology’s ability to sustain life
 Fear of living a life of prolonged suffering
“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 patient’s 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
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
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
 Physician’s 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
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
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
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.
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
Summary

Our task as physicians…

 When possible to cure
 Always to care
 Never to kill
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
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
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
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
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
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