Presentation on theme: "Dan Weijers Dan.Weijers@vuw.ac.nz Ronald Dworkin and Rebecca Dresser on the moral status of advance directives Dan Weijers Dan.Weijers@vuw.ac.nz."— Presentation transcript:
1 Dan Weijers Dan.Weijers@vuw.ac.nz Ronald Dworkin and Rebecca Dresser on the moral status of advance directivesDan 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 dieDworkin’s chief example – Alzheimer’s disease“the saddest of tragedies” What is Alzheimer's disease?
3 Is Alzheimer’s a big problem? Millions of people have this diseaseIf we all live to 80, nearly 2 in 10 will get itIf we all live to 90, nearly 5 in 10 will get itHands 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 decisionsHealthcare choices etc.It depends on competenceLike kids, severely dementedpeople can’t be trusted to makedecisions in their best interests
5 Is Alzheimer’s always so bad? Dworkin: “Each of the millions of Alzheimer’s cases is horrible” Our revised understanding of Alzheimer’sSpeaking 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 directivesLiving 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?” 
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’sLegal 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.” The Jehovah’s Witness caseWe respect their choice of no blood transfusionsSame for ‘rather dead than legless’ etc. casesWhy 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 advisorWho is not continuing with philosophy study after this course?
12 Margo on the evidentiary view? No right to autonomyCurrent Margo: Demented people no longer generally know what’s best for themEarly Margo: We are experts at our own lives, but not Alzheimer’sWe 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 interestsWe allow autonomous decisions even though they know it’s not in their best interestsWeakness of the willGrandma knows smoking is bad for her, but does it anywaySelf-sacrificeI’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.” “Recognizing an individual right of autonomy makes self-creation possible... [including making] choices that reflect weakness, in-decision, caprice, or plain irrationality” “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.” 
15 Competence Specific vs. general competence Competence = “the ability to act out of genuine preference or character or conviction or sense of self.” Choices are relatively stable, in line with character etc. and only self-defeating about as much as normal adultsMild dementia vs. severe dementiaAre drunk people and ‘born again’s competent?
16 Margo on the integrity view? Depends on competence of autonomyOnce 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” 
17 Precedent Autonomy (PA) Ulysses & the Jehovah’s Witness CaseWhy respect current preference over PA (earlier one)?PA is only useful as evidence of current wishesCurrent preference is a “fresh exercise” of autonomy Ulysses is deranged, the Jehovah’s Witness isn’tDworkin: ‘fresh exercise’ is best - competence over regretEvidence of current wishes ‘fresh exercise’ of autonomyUlysses current wish is to be released Deranged, so no ‘fresh exercise’.So PA is inaccurate So PA standsSo release = wrong So do not release = rightRegret (dead) Non-regretJW current wish is for transfusion Not deranged, so ‘fresh exercise’.(not So PA is inaccurate So PA is overruledderanged) So give transfusion = right So give transfusion = rightRegret RegretRegret is mixed, but it doesn’t matter as much as honouring competent exercises of autonomy
18 Summary of DworkinNeither the evidentiary or integrity views recommend a right to autonomy for severely demented peopleIntegrity view recommends earlier preferences standing for severely demented peopleSo, 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 aliveSame 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.”  Reasons include:We don’t care much about narrative integrityWhose interests are at stake anyway?Critical interests aren’t more importantThe state should interfere in some cases
21 Dworkin on our best interests Experiential interestsHaving good experiencesE.g. playing softball, eating well, walking in the woods, sailing fast, working hard Necessary for good lifeCritical interestsHopes/plans that add genuine meaning to lifeE.g. establishing close friendships, raising children, achieving competence at work Add value over the good experiences they provideThese are more important than experiential interestsIntegrity: 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 endFor 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” 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 autonomyBeneficence on critical interests view of welfare= promote critical interests over experiential onesNormally, beneficence would say to prolong a happy life, Dworkin disagrees in at least the Margo caseEarly 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 planningAnd those who do, mostly assign a f-or-f rather than issue specific instructionsIf 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.” Very hard to be informed - New therapies can come outProblems revealed in study of AD (for Alzheimer’s)1/3 agree with contradictory statements2/3 wanted f&f and doctors to be able to change ADCheap and easy 15 min ADs advertisedSo, most ADs are probably not created competently – giving us less reason to follow themContradictory 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 theoriesPsychological continuity theoryIs 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 & EMDworkin assumes CM & EM are the same person
27 Doubts about critical interests Assume Margo didn’t make an ADHer f&f have to decide what’s in her best interestsCritical interests shouldn’t come firstWe take life “one day at a time” We don’t care much about narrative coherenceCritical interests are usually pursued for the good experiences they bringThey can be hard for f&f to guess
28 The State’s interest in Margo’s Life A derivative interest in protecting human lifeBased on Margo’s interestsPositive experience via consciousness/sentienceGives the state strong reason to intervenePrevent Margo’s AD or f&f being used to let her dieSame as Dworkin on abortion of conscious/sentient fetuses
29 Should Margo be Killed? All scenarios 1) F&f want death Late stage Alzheimer’sVery happyAdvance directive: to be let die (or, preferably, killed) if she got Alzheimer’s1) 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’sMetaphysical problem: No sign that she knows who she isF&f think she has a different personalityCan’t make non-immediate plans
30 Interests, certainty, and rights What is in people’s best interests?Critical interests: e.g. integrity, meaningExperiential interests: e.g. happiness, joyWho 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 comatoseWould 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 doctorWhy?
32 Self-determination and euthanasia Dan WeijersVictoria University of Wellington2011
33 Intro to Euthanasia Euthanasia = good death Banned Exit Euthanasia Ad.wmvUsually 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.” Proponents of euthanasia have four general arguments – each of which is badThere 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 points1) Legitimating another way to kill2) The limits of self-determination3) 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 adda whole new categoryto killing to a societythat already has toomany excuses toindulge itself in thatway.’ 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.’ 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.” Asking for amputations and cat-face surgery
39 Daniel Callahan, ‘When Self-Determination Runs Amok’ The four bad arguments1) Self-determination2) Killing and allowing to die3) Calculating the consequences4) 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.’ 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” 
41 Self-Determination & Slavery “one person should not have the right to own another, even with the other’s permission” 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 continueDuelers 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 No objective grounds to decide whether:Suffering is unbearable orA life is worth living orHow much value a life can provideThese decisions don’t rest on objective physiological factsPain is felt differentlyPhysical disabilities cause varying psychological problemsTo 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 livingHow 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 dieLethal injection vs. turning off life-supportCommission vs. omission is not the same‘death from disease has been abolished, leaving only the actions of physicians as the cause of death.’ Do we really want to say that nature/biology is not the cause?Causality vs. culpabilityDirect physical cause vs. attributing moral responsibility to human actionsCausality vs. culpability are confused in 3 ways
44 Causality and culpability 1 Stopping treatment is not the cause of deathThe cause of death is the diseaseTurning off the life-support machine does not kill a healthy personAlthough 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 deathWe have constructed an ethics of life and death for medicineCalling 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 overburdenedWhen patients die, doctors feel morally responsibleDoctors will be encouraged to kill on grounds of “humanness and economics” (even if patient not so keen?) Last 6 months costs the taxpayer a lotLast 6 months often involves objective suffering
47 3) Calculating the consequences 1 Abuses are inevitableNot all will agree with law as written and bend it to their own endsSome evidence of non-voluntary euthanasia in HollandPolice will have more important things to do than follow up on potential abusesHard to write law (what constitutes ‘unbearable suffering’), so hard to enforceDecisions within the context of private and confidential doctor patient relationshipAre 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 suicideUsually lethal injection or drug cocktailSwiss politicians ponder ban on assisted suicideDignitas 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.” 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” Do doctors have the relevant expertise?Lots of people commit suicide because they find no meaning in life – a question of valuesDoes 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” “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.” 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 accidentParalysed from the chest downHad to be helped around constantlyManual excretion requiredNo more sexPainConstant humiliationSuicide after several failed attemptsIf 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” Callahan’s mischaracterization of people with terrible diseases“looking for the meaning of existence and find it, absurdly, in a lethal injection” 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” And “few have a taste for blowing out their brains or jumping from high places” “That leaves drugs” but… the medical profession has “monopoly power over drugs”  (which is why we turn to them)And laws deter or prevent medical professionals from assisting these peopleBasically, 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 context1st kidney is OK, but not the 2ndToo much harm could be causedExtortion, misinformation etc.It’s not a ‘fundamental moral wrong’ to give away my second kidneyIt’s just not a good idea to allow it when all things are consideredThe same goes for euthanasiaCallahan: “[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 caseTerminally 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 subjectiveLachs: True, but so are their views about their health and illness symptoms and doctors still rely on these to make important medical decisionsDoctors are good are turning patient’s subjective views into objective judgmentsIt’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 factsE.g. Terminally ill and suffering person with no f&f vs. young father at dentist who says he wants to dieIt’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 cannotdistinguishsuch situationsfrom those inwhich thedesire for deathis rhetorical,misguided,temporary, oridiotic.” 
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” 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 claimsPrivacy 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” Subject to normal liberal non-harming limits