Ronald Dworkin and Rebecca Dresser on the moral status of advance directives

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

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? • http://www.youtube.com/watch?v=9Wv9jrk-gXc

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 • http://www.youtube.com/watch?v=PFO74ok-23I

6. Margo • Very happy • “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]

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

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 • http://www.youtube.com/watch?v=WmzU47i2xgw • 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 = respect Early Margo’s precedent autonomy • 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

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 • 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?)

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 • http://www.youtube.com/watch?v=qRDZFwlWU1s • 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

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?

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 • http://rt.com/news/euthanasia-switzerland-suicide-contraversy/ • http://www.dignitas.ch/index.php?lang=en • 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?