1. Dan Weijers Dan.Weijers@vuw.ac.nz
Ronald Dworkin and Rebecca Dresser on the moral status of advance directives
Dan Weijers

2. Ronald Dworkin, ‘Life Past Reason’
Respect for the intrinsic value of people with dementia can mean respecting their earlier autonomy and letting them die
Dworkin’s chief example – Alzheimer’s disease
“the saddest of tragedies” [357]
What is Alzheimer's disease?

3. Is Alzheimer’s a big problem?
Millions of people have this disease
If we all live to 80, nearly 2 in 10 will get it
If we all live to 90, nearly 5 in 10 will get it
Hands up for Alzheimer’s

4. Alzheimer’s patients’ rights
Should mentally ill people have the same rights as we do?
E.g. right to autonomy over key life decisions
Healthcare choices etc.
It depends on competence
Like kids, severely demented
people can’t be trusted to make
decisions in their best interests

5. Is Alzheimer’s always so bad?
Dworkin: “Each of the millions of Alzheimer’s cases is horrible” [358]
Our revised understanding of Alzheimer’s
Speaking to Alzheimer's

6. Margo Very happy Metaphysical problem
“Despite her illness, or maybe because of it, Margo is undeniably one of the happiest people I have known. There is something graceful about the degeneration her mind is undergoing, leaving her carefree, always cheerful” [358, 366]
Metaphysical problem
“How does Margo maintain her sense of self? When a person can no longer accumulate new memories as the old rapidly fade, what remains? Who is Margo?” [358, 366]
Loves peanut butter and jam sandwiches, “reading” mystery novels, and going to Alzheimer's art class (where she always painted the same thing – 4 concentric rose-coloured circles)

7. Advance directives
Living Wills and other advance treatment directives (advance directives)
‘instructions given by individuals specifying what actions should be taken for their health in the event that they are no longer able to make decisions due to illness or incapacity’
E.g. ‘Turn off life support if I’ve lost most mental faculties’

8. Dworkin’s questions about people who become demented
What can you request in an advance directive?
The denial of life-prolonging treatment?
To be directly killed?
“Does a competent person’s right to autonomy include… the power to dictate that life-prolonging treatment be denied him later… even if he, when demented, pleads for it?” [359]

9. The Case of Margo Very happy Metaphysical problem
Advance directive: to give away all her money and be let die (or, preferably, killed) if she got Alzheimer’s
Legal philosopher

10. Respecting a person’s dignity/autonomy
“Adult citizens of normal competence have a right to autonomy, that is, a right to make important decisions defining their lives for themselves.” [359]
The Jehovah’s Witness case
We respect their choice of no blood transfusions
Same for ‘rather dead than legless’ etc. cases
Why this right to autonomy is lost when ‘reason’ goes (e.g. Margo) …

11. Why is autonomy good to have?
The evidentiary view:
Our experience (the evidence) tells us that ‘… each person generally knows what is in his own best interests better than anyone else.’ [359, emphasis added]
I’m an expert career advisor
Who is not continuing with philosophy study after this course?

12. Margo on the evidentiary view?
No right to autonomy
Current Margo: Demented people no longer generally know what’s best for them
Early Margo: We are experts at our own lives, but not Alzheimer’s
We can’t accurately predict what dementia will be like so our choices are much less likely to be what’s best for us

13. A problem with the evidentiary view?
Some cases show that we value autonomy for reasons other than what’s in our/people’s best interests
We allow autonomous decisions even though they know it’s not in their best interests
Weakness of the will
Grandma knows smoking is bad for her, but does it anyway
Self-sacrifice
I’m next on the list for a heart transplant, but that young person deserves it

14. Dworkin’s preferred ‘integrity’ view of autonomy’s goodness
“The value of autonomy […] derives from the capacity it protects: the capacity to express one’s own character – values, commitments, convictions, and critical as well as experi-ential interests – in the life one leads.” [360]
“Recognizing an individual right of autonomy makes self-creation possible... [including making] choices that reflect weakness, in-decision, caprice, or plain irrationality” [360]
“even people whose lives feel unplanned are nevertheless often guided by a sense of the general style of life they think appropriate, of what choices strike them as not only good at the moment, but in character for them.” [366]

15. Competence Specific vs. general competence
Competence = “the ability to act out of genuine preference or character or conviction or sense of self.” [361]
Choices are relatively stable, in line with character etc. and only self-defeating about as much as normal adults
Mild dementia vs. severe dementia
Are drunk people and ‘born again’s competent?

16. Margo on the integrity view?
Depends on competence of autonomy
Once this is lost, autonomy needn’t be respected for Current Margo (other rights remain, though)
But Early Margo’s autonomy can still be respected…
Making this kind of advance directive is “exactly the kind of judgment that autonomy… most respects: a judgment about the overall shape of the kind of life [she] wants to have led” [361]

17. Precedent Autonomy (PA)
Ulysses & the Jehovah’s Witness Case
Why respect current preference over PA (earlier one)?
PA is only useful as evidence of current wishes
Current preference is a “fresh exercise” of autonomy [362]
Ulysses is deranged, the Jehovah’s Witness isn’t
Dworkin: ‘fresh exercise’ is best - competence over regret
Evidence of current wishes ‘fresh exercise’ of autonomy
Ulysses current wish is to be released Deranged, so no ‘fresh exercise’.
So PA is inaccurate So PA stands
So release = wrong So do not release = right
Regret (dead) Non-regret
JW current wish is for transfusion Not deranged, so ‘fresh exercise’.
(not So PA is inaccurate So PA is overruled
deranged) So give transfusion = right So give transfusion = right
Regret Regret
Regret is mixed, but it doesn’t matter as much as honouring competent exercises of autonomy

18. Summary of Dworkin
Neither the evidentiary or integrity views recommend a right to autonomy for severely demented people
Integrity view recommends earlier preferences standing for severely demented people
So, respect for autonomy gives us reason to kill or, let die, people with Alzheimer’s (with advance directives to do so)
May be other reasons to disrespect her autonomy and keep her alive
Same as for ADs to be let die when in a ‘vegetative state’

19. Clive Wearing’s story The Man with a 30 Second Memory
Is Clive Wearing a person?
Apply Dworkin’s analysis to Wearing.
What should be done?

20. Rebecca Dresser, ‘Dworkin on Dementia: Elegant Theory, Questionable Policy’
“I am far from convinced of the wisdom or morality of [Dworkin’s] proposals for dementia patients.” [368] Reasons include:
We don’t care much about narrative integrity
Whose interests are at stake anyway?
Critical interests aren’t more important
The state should interfere in some cases

21. Dworkin on our best interests
Experiential interests
Having good experiences
E.g. playing softball, eating well, walking in the woods, sailing fast, working hard [366]
Necessary for good life
Critical interests
Hopes/plans that add genuine meaning to life
E.g. establishing close friendships, raising children, achieving competence at work [366]
Add value over the good experiences they provide
These are more important than experiential interests
Integrity: Forging a coherent narrative structure to our life

22. Dworkin on integrity and dementia
Our critical interests, especially integrity, explain why we care about how our lives end
For most people, death has a “special, symbolic importance: [people] want their deaths… to express and… confirm the values they believe most important to their lives” [366]
So, people (or their well-informed f&f) should be able to dictate how the last chapter of their life goes, rather than some unacceptably morally paternalistic one-size-fits-all law of the state

23. Dworkin on Margo Respect for rights on integrity view of autonomy
= respect autonomy
= respect Early Margo’s precedent autonomy
Beneficence on critical interests view of welfare
= promote critical interests over experiential ones
Normally, beneficence would say to prolong a happy life, Dworkin disagrees in at least the Margo case
Early Margo’s critical interests persist, even if Current Margo disagrees, because CM is demented

24. Dresser: We don’t care much about narrative integrity
How important is how we die to us?
Hardly anyone engages in end-of-life planning
And those who do, mostly assign a f-or-f rather than issue specific instructions[368]
If it’s not all that important, why give precedent autonomy so much weight?
But, it does seem important to those who bother to write one

25. Problems with advance directives
Can Margo competently make decisions about her care in the event of dementia?
Does she know what it’s like?
“The subjective experiences of dementia is more positive than most of us would expect.” [368]
Very hard to be informed - New therapies can come out
Problems revealed in study of AD (for Alzheimer’s)
1/3 agree with contradictory statements
2/3 wanted f&f and doctors to be able to change AD
Cheap and easy 15 min ADs advertised
So, most ADs are probably not created competently – giving us less reason to follow them
Contradictory statements:
“I would never want to be on a respirator in an intensive care unit.”
“If a short period of extremely intensive medical care could return me to near-normal condition, I would want it.”

26. Who is Margo? Theories of Personal Identity
Animal/body theories
Psychological continuity theory
Is CM (advanced Alzheimer’s) the same person as EM?
What if she can’t remember who she is or her place in the world?
What if her f&f all think she’s a different person?
We might be more alike than CM & EM
Dworkin assumes CM & EM are the same person

27. Doubts about critical interests
Assume Margo didn’t make an AD
Her f&f have to decide what’s in her best interests
Critical interests shouldn’t come first
We take life “one day at a time” [370]
We don’t care much about narrative coherence
Critical interests are usually pursued for the good experiences they bring
They can be hard for f&f to guess

28. The State’s interest in Margo’s Life
A derivative interest in protecting human life
Based on Margo’s interests
Positive experience via consciousness/sentience
Gives the state strong reason to intervene
Prevent Margo’s AD or f&f being used to let her die
Same as Dworkin on abortion of conscious/sentient fetuses

29. Should Margo be Killed? All scenarios 1) F&f want death
Late stage Alzheimer’s
Very happy
Advance directive: to be let die (or, preferably, killed) if she got Alzheimer’s
1) F&f want death
(because early Margo would’ve wanted death)
2) F&f want life
(despite EMs AD because CM is happy)
3) No f&f to make decision
(does $$ matter?)
Late stage Alzheimer’s
Metaphysical problem: No sign that she knows who she is
F&f think she has a different personality
Can’t make non-immediate plans

30. Interests, certainty, and rights
What is in people’s best interests?
Critical interests: e.g. integrity, meaning
Experiential interests: e.g. happiness, joy
Who is best at knowing what is in people’s best interests?
How confident should we be about our judgments of what is good for us or others?
Who has rights that are relevant here?
Early Margo, current Margo, f&f, doctors… ?

31. D.I.Y. A.D.
How bad does it have to get before your autonomy is relinquished?
Mild, moderate, severe dementia, or comatose
Would you want to be let die? If so, at what point?
Who should your autonomy be relinquished to?
Your earlier self, your f&f, your doctor
Why?

32. Self-determination and euthanasia
Dan Weijers
Victoria University of Wellington
2011

33. Intro to Euthanasia Euthanasia = good death
Banned Exit Euthanasia Ad.wmv
Usually someone with a terminal illness who considers themselves to have a life not worth living, and can’t or won’t commit suicide, but wants to die (preferably with dignity)

34. Daniel Callahan, ‘When Self-Determination Runs Amok’
“The euthanasia debate is not just a moral debate.” It’s “emblematic of three important turning points in Western thought.” [381]
Proponents of euthanasia have four general arguments – each of which is bad
There are already too many chances to kill one another, so lets not harm society and burden doctors with euthanasia because of our overblown sense of self-determination

35. Daniel Callahan, ‘When Self-Determination Runs Amok’
The three turning points
1) Legitimating another way to kill
2) The limits of self-determination
3) Over-extending medicine

36. 1) Legitimating another way to kill
We have been trying to reduce the ways we can (legitimately or otherwise) kill each other
‘Euthanasia would add
a whole new category
to killing to a society
that already has too
many excuses to
indulge itself in that
way.’ [381]
Guns, war, murder etc.

37. 2) The limits of self-determination
‘The acceptance of euthanasia would sanction a view of autonomy holding that individuals may, in the name of their own private idiosyncratic view of the good life, call upon others, including such institutions as medicine, even at the risk of the common good.’ [381]
E.g. ugly nudists and flashers

38. 3) Over-extending medicine
The traditional view:
“medicine should limit its domain to promoting and preserving human health.”
Euthanasia’s proponents’ view:
“It should be prepared to make its skills available to individuals to help them achieve their private vision of the good life.” [381]
Asking for amputations and cat-face surgery

39. Daniel Callahan, ‘When Self-Determination Runs Amok’
The four bad arguments
1) Self-determination
2) Killing and allowing to die
3) Calculating the consequences
4) Euthanasia and medical practice

40. 1) Self-Determination The value of self-determination
It’s good to be able to build our lives as we see fit, but what should the limits be?
Suicide more personal than euthanasia
‘Euthanasia is … no longer a matter only of self-determination, but a mutual, social decision between two people, the one to be killed and the one to do the killing.’ [382]
How to get from our right of self-determination to waiving our right to life and giving a doctor the right to kill us?
“I have yet to hear a plausible argument why it should be permissible for us to put this kind of power in the hands of another” [382]

41. Self-Determination & Slavery
“one person should not have the right to own another, even with the other’s permission” [382]
Reasons why:
“it is a fundamental moral wrong for one person to give over his life and fate to another, whatever the good consequences”
It’s also “wrong for another person to have that kind of total, final power”
“consenting adult killing, like consenting adult slavery or degradation, is a strange route to human dignity”
Examples why:
Man was happy being a slave, wants to continue, but wrong to continue
Duelers hand over the right to kill them to another, but they shouldn’t

42. Self-Determination & doctor’s independent grounds to kill
To be responsible moral agents, doctors’ would also need “independent moral grounds” to kill [382]
No objective grounds to decide whether:
Suffering is unbearable or
A life is worth living or
How much value a life can provide
These decisions don’t rest on objective physiological facts
Pain is felt differently
Physical disabilities cause varying psychological problems
To decide if a life is worth living (etc), doctors will have to treat patients’ values – but how can they make this judgment?
Doctors say that there is no objective measure of if a life is worth living
How is the doctor finding it hard to diagnose whether a life is worth living related to self-determination? These worries show that the values and judgments of others are involved and so euthanasia is not just about self-determination – it’s a social problem.

43. 2) Killing vs. allowing to die
Killing is not the same as allowing to die
Lethal injection vs. turning off life-support
Commission vs. omission is not the same
‘death from disease has been abolished, leaving only the actions of physicians as the cause of death.’ [383]
Do we really want to say that nature/biology is not the cause?
Causality vs. culpability
Direct physical cause vs. attributing moral responsibility to human actions
Causality vs. culpability are confused in 3 ways

44. Causality and culpability 1
Stopping treatment is not the cause of death
The cause of death is the disease
Turning off the life-support machine does not kill a healthy person
Although not a cause we might find stopping treatment culpable (blameworthy)
Stopping treatment out of malice or mistake

45. Causality and culpability 2
Now that we have some control, we have decided what actions are culpable around life and death
We have constructed an ethics of life and death for medicine
Calling letting die (when in accordance with this ethics) ‘killing’ is to make a mistake
‘you killed her’ just means ‘in my opinion you were involved in her death in a way that makes you blameworthy of her death’
‘Killing’ should be reserved for lethal injections and stopping life support for patients who would otherwise recover

46. Causality and culpability 3
Two disturbing consequences of conflating killing and letting die:
Doctors are overburdened
When patients die, doctors feel morally responsible
Doctors will be encouraged to kill on grounds of “humanness and economics” (even if patient not so keen?) [384]
Last 6 months costs the taxpayer a lot
Last 6 months often involves objective suffering

47. 3) Calculating the consequences 1
Abuses are inevitable
Not all will agree with law as written and bend it to their own ends
Some evidence of non-voluntary euthanasia in Holland
Police will have more important things to do than follow up on potential abuses
Hard to write law (what constitutes ‘unbearable suffering’), so hard to enforce
Decisions within the context of private and confidential doctor patient relationship
Are there abuses in countries where assisted suicide is legal?
How can they best be dealt with?
Less than 10% of doctors report euthanisations

48. Dignitas, Exit and assisted suicide
Assisted suicide is when someone else provides the means for you to commit suicide
Usually lethal injection or drug cocktail
Swiss politicians ponder ban on assisted suicide
Dignitas worker: we can give you a discount…
Right to self-determination running amok here?
Do we need tighter laws or just to ban assisted suicide?
If tighter laws, what should be allowed?

49. 3) Calculating the consequences 2
If self-determination allows euthanasia for the terminally ill, why not anyone who judges their life not worth living, including those with no medical problem?
It would be unfair not to euthanize a demented person who is suffering
“If we really believe in self-determination, then any competent person should have the right to be killed by a doctor for any reason that suits him. If we believe in the relief of suffering, then it seems cruel and capricious to deny it to the incompetent.” [385]
There is no logical stopping point once the door is open

50. 4) Euthanasia and Medical Practice
Some think: “euthanasia and assisted suicide are perfectly compatible with the aims of medicine” [385]
Do doctors have the relevant expertise?
Lots of people commit suicide because they find no meaning in life – a question of values
Does anyone have the expertise to know if lives are worth living?
A philosopher with a degree in psychiatry and an interest in quality of life indicators?
John Broome comes close – he wrote ‘weighing lives’

51. 4) Euthanasia and Medical Practice
“The great temptation of modern medicine, not always resisted, is to move beyond the promotion and preservation of health into the boundless realm of general human happiness” [385]
“It would be terrible for physicians to […] think that in a swift, lethal injection, medicine has found its own answer to the riddle of life.” [385]
Doctors should only provide therapy for biological concerns related to illness and aging

52. The Note A total thrill-seeker who had a great life
Hang-gliding accident
Paralysed from the chest down
Had to be helped around constantly
Manual excretion required
No more sex
Pain
Constant humiliation
Suicide after several failed attempts
If Chris had been able to plan his death (assisted suicide, then he probably would have done so).
Should Chris have been able to get an assisted suicide from a doctor?

53. John Lachs, ‘When Abstract Moralizing Runs Amok’
Callahan has missed the personal side of this problem by focusing on abstract theories
“Moral reasoning is more objectionable when it is abstract than when it is merely wrong” [386]
Callahan’s mischaracterization of people with terrible diseases
“looking for the meaning of existence and find it, absurdly, in a lethal injection” [386]
They are not looking for meaning, they want relief from their suffering!

54. John Lachs, ‘When Abstract Moralizing Runs Amok’
“They must bear the pain of existence without the ability to perform the activities that give life meaning” [387]
And “few have a taste for blowing out their brains or jumping from high places” [387]
“That leaves drugs” but… the medical profession has “monopoly power over drugs” [387] (which is why we turn to them)
And laws deter or prevent medical professionals from assisting these people
Basically, we need drugs to kill ourselves with dignity when life no longer has meaning but still has lots of other bad things… but we can’t get them!

55. Can rights be transferred? 1
Callahan: the right to kill yourself cannot be transferred
“a fundamental moral wrong” to give your “life and fate to another”
Most rights can be transferred:
teeth cleaning, (sweetheart, dental hygienist)
home ownership, kidneys,
deciding when to rise, sleep (by joining the army).
Of course there are limits:
Usually involving making money from things (e.g. selling your kids)
I can work minimum wage flipping burgers 10 hours a day, but I can’t permanently sell myself as a slave

56. Can rights be transferred? 2
The significance of context
1st kidney is OK, but not the 2nd
Too much harm could be caused
Extortion, misinformation etc.
It’s not a ‘fundamental moral wrong’ to give away my second kidney
It’s just not a good idea to allow it when all things are considered
The same goes for euthanasia
Callahan: “[if euthanasia is legalised, then] any competent person should have a right to be killed by a doctor for any reason that suits him”
Lachs: no, we have to balance the costs in each case
Terminally ill and suffering person with no f&f vs. young father at dentist who says he wants to die

57. Who are they to judge?
Callahan: Patients views about their life and wellbeing are inherently subjective
Lachs: True, but so are their views about their health and illness symptoms and doctors still rely on these to make important medical decisions
Doctors are good are turning patient’s subjective views into objective judgments
It’s absurd to say (as Callahan does) that doctors must either accept or reject all of patients views about their life and wellbeing or risk treating values instead of biological facts
E.g. Terminally ill and suffering person with no f&f vs. young father at dentist who says he wants to die
It’s clear that one viewpoint is not useful to follow

58. Slippery slope
“They insult our sensitivity by the suggestion that a society of individuals of good will cannot recognize situations in which our fellows want and need help and cannot
distinguish
such situations
from those in
which the
desire for death
is rhetorical,
misguided,
temporary, or
idiotic.” [388]

59. Abuse?
“persons soliciting help in dying must be ready to demonstrate that they are of sound mind and thus capable of making such choices, that their desire is enduring, and that both their subjective and their objective condition makes their wish sensible” [389]
And doctors must consider if they can and think they should perform such an act (in general and in this case)
This includes proactive assessment of the patients claims
Privacy vs. abuse – permitting scrutiny is compatible with preserving the privacy to decision-making.
The status of self-determination is not absolute, but…
“in the end, our lives belong to no one but ourselves” [389]
Subject to normal liberal non-harming limits