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Just Caring: In defense of the Role of Democratic Deliberation in Health Care Rationing and Priority-Setting

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Title: Just Caring: In defense of the Role of Democratic Deliberation in Health Care Rationing and Priority-Setting


1
Just Caring In defense of the Role of Democratic
Deliberation in Health Care Rationing and
Priority-Setting
  • Leonard M. Fleck, Ph.D.
  • Michigan State University

2
First, a word from our sponsor
3
No Painless Cost Control
4
Some Statistics
  • In 2009 in the US we spent 2.5 trillion on
    health care, or about 17.3 of GDP.
  • Compare to 1960 when we spent 26 billion on
    health care, or about 5.2 of GDP
  • Project to 2018 when we will spend 4.5 T, or
    about 20 of projected GDP
  • Canada, UK, most European nations currently spend
    8-10 of GDP on health care.

5
Some Statistics
  • In 2009 roughly 35 of total health expenditures
    were consumed by the 13 of the US population
    over age 65 (39 million people), or about 850
    billion.
  • In 2012 roughly 15 of our population will be
    over age 65 and consume 1.2 Trillion in health
    care
  • In 2025 roughly 21 of our population will be
    over age 65, about 76 million individuals.
  • Medicare spending in the US will go from 500
    billion in 2009 to 1 trillion in 2019.

6
Key Claims
  • Significant health reform is an impossible dream
    unless
  • The Just Caring problem is explicitly
    acknowledged and forthrightly addressed
  • The Just Caring problem is addressed through a
    very broad, prolonged, fair, and transparent
    process of rational democratic deliberation.

7
Key Claims
  • One major dimension of the Just Caring problem
    is the ragged edge problem. Though Callahan
    called our attention to it more than 20 years
    ago, it has been largely ignored. But it is
    getting more complex and more pervasive. If we
    fail to address it effectively, health reform
    will fail.

8
KEY CLAIMS
  • Another major dimension of the Just Caring
    problem is the rough justice problem. Because
    of the heterogeneity and complexity of health
    needs and the complexity and heterogeneity (and
    uncertainty) of potential therapeutic responses
    to those needs, we can expect no more than rough
    justice in meeting those needs. Very often
    every effort to eliminate one pattern of
    injustices seems to create another pattern.

9
KEY CLAIMS
  • The moral terrain on which we need to resolve the
    Just Caring problem is rugged because we do
    not have the shared broad social understandings
    of what is just or just enough to generate a
    productive moral discussion. We want to apply
    very different understandings of justice in
    complex moral circumstances.

10
CASE
  • Dr. Michael DeBakey, age 97, pioneering heart
    surgeon, struggling now with a dissecting aortic
    aneurysm (Jan. 06)
  • Not sure he wants the surgery necessary to save
    his life, eventually agrees
  • Lots of complications following surgery costs in
    excess of 1 million for 8-month stay, but glad
    to be alive in Jan 07.
  • Would it be unjust to deny him that care?

11
CASE
  • Mr. Diaz, 69 yrs old (2002) advanced AD, machine
    operator,
  • First signs of AD in early 1990s, cared for by
    brother, chokes on food in 2002, ends up
    vent-dependent in hospital on feeding tube
  • Develops pneumonia and intestinal bleeding in Feb
    2003, spends 140 days in the hospital at a cost
    of 280K
  • Would it be unjust to deny him that care?

12
Justice and Cost-Effectiveness
  • In 2009 we implanted in the US about 200,000
    Implantable Cardiac defibrillators ICDs at a
    cost of 40K each. 81 of them never fired in 5
    yrs, meaning they made no difference.
    Consequently, we are often paying as much as
    367K per QALY Quality-Adjusted Life Yearsaved.
  • Is that a just or prudent use of limited health
    care resources?

13
ICDs A Rationing Example
  • A test called the T-wave alternans test was
    recently FDA approved. It can identify with
    98.8 accuracy who will NOT experience a cardiac
    arrhythmia in the next five years. This test can
    reduce the ICD implantation rate by 33, saving
    2-3B per year. But a 1.2 error rate means
    that 800 people will die from a fatal arrhythmia
    per 70,000 denied an ICD.

14
ICDs Key Ethical Issue
  • Would a society still be just and caring (not
    open to moral criticism) if we put in place an
    ICD rationing protocol that would deny an ICD to
    anyone who failed the T-wave alternans test?
    In other words we would accept 800 preventable
    deaths in order to save 2-3B per year in medical
    expenses.

15
A Heart-Stopping Title
  • Consider the following article in the journal
    Circulation, 2010 121 208-13.
  • Operative and Middle-Term Results of Cardiac
    Surgery in Nonagenerians A Bridge Toward Routine
    Practice.
  • Conclusion Although the rate of postoperative
    complications remains high, cardiac surgery in
    nonagenarians can achieve functional improvement
    at the price of considerable operative and
    follow-up mortality rates. (at 208) The authors
    add that such surgery represents a real
    challenge in the elderly patients who are more
    likely to have co-morbid conditions and a
    complicated/ prolonged hospital course
    post-operatively.

16
QUESTIONS
  • To what extent is a just and caring society
    obligated to provide major life-prolonging
    surgeries to patients in their eighties and
    nineties who have many co-morbid conditions?
    That is, how high a priority ought such surgeries
    have relative to other unmet health needs?
  • To what extent is a just and caring society
    obligated to provide major life-prolonging
    interventions to patients with late-stage
    dementias and many co-morbid conditions? That
    is, how high a priority ought such interventions
    have relative to other unmet health needs?

17
KEY CLAIM
  • The questions in the prior slide cannot be
    justly addressed through exclusive reliance on
    any sort of expertise, or on individual physician
    judgment, or on administrative judgments (as in a
    managed care plan or hospital), or by allowing
    ability to pay to determine outcomes.
  • These are precisely the sort of questions that
    are best addressed through, fair, inclusive,
    carefully structured processes of rational
    democratic deliberation.

18
KEY CLAIM
  • If the need for health care rationing and
    priority-setting is inescapable, and if we need
    just and legitimate rationing protocols and
    practices, then BOTH the process that would yield
    those protocols and practices as well as the
    protocols and practices themselves must be
    respectful of our liberal and pluralistic
    commitments and incorporate our shared sense of
    justice.
  • BUT, outcomes that are a product of normal
    interest group politics and relative political
    power will fail the above test.

19
Why Health Costs Increase Inexorably
  • Insurance mechanism
  • New medical technologies
  • Extremely fragmented system for financing health
    caregtgthigh administrative costs
  • Competition among health care providers
  • Increase in burden of chronic illness
  • Social belief in pricelessness of human life
  • Lack of shared social understanding of health
    care justice/ limits on demands

20
Cost-Escalating Reasons
  • Advancing Medical Technologies
  • Beta-interferon for MS
  • Statins
  • Implantable Cardiac Defibrillators
  • MRIs/CTs/PET scans
  • Totally Implantable Artificial Hearts
  • Pre-Implantation Genetic Diagnosis
  • Renal dialysis
  • Factor VIII for hemophiliacs
  • Herceptin/ Iressa etc---very expensive
    anti-cancer drugs
  • Rehab for spinal cord injuries
  • AIDS drugs (triple and quadruple combos)

21
Cost-Escalating Reasons
  • RAGGED EDGES
  • If there are no bright lines that establish
    limits, then an inchoate jumble of moral
    intuitions masquerading as a public sense of
    justice will ignore health care costs and insist
    that therapies be provided to desperate patients
    without preferred alternatives.

22
Inchoate Moral Intuitions
  • Rule of Rescue
  • Urgent needs (related to life-threatening
    illness)
  • Last chance therapies
  • Caring for the medically least well off
  • Pricelessness of human life
  • Social visibility of desperate patients

23
Cost-Escalating Reasons
  • Chronic conditions are concentrated among the
    elderly the 13 of our population over age 65
    consumes 35 of all health dollars (about 850B
    in 2009)
  • The 23 of Medicare beneficiaries with five or
    more chronic conditions consume 68 of Medicare
    dollars (Anderson, NEJM, 7/21/05)
  • That outcome is largely a product of our past
    medical successes, which is why some health
    policy analysts say we are doing better and
    feeling worse.

24
Pharmacogenomics Ethical Challenges
  • Key Issue How should we (citizens and physicians
    in a just and caring society) determine the
    precise characteristics of patients who would
    have a prima facie just claim to access very
    expensive drugs that would be more likely to be
    therapeutically beneficial because of either
    their genetic characteristics or the genetic
    characteristics of a cancerous tumor? This
    question gets raised when what are being bought
    are extra weeks or extra months of life on
    average.
  • Fojo/Grady cancer cost stats.

25
Drug---Cost---Survival Gain
  • Cetuximab (Erbitux) 80 352 1.2 mo ( 1 )
  • Sorafnib (Nexavar) 90 816 1.5 mo
  • Bevacizumab (Avastin) 15752 10 d
  • Erlotinib (Tarceva) 34373 2.7 mo
  • Stats from Fojo/Grady, How Much is Life Worth
    Cetuximab, non-small lung cancer, and the 440
    billion question Journal of the National Cancer
    Institute June 29, 2009

26
Comment
  • If we allow a survival advantage of 1.2 months
    to be worth 80,000, and by extrapolation
    survival of a year to be valued at 800,000, we
    would need 440 billion annually to extend by
    one year the life of the 550,000 Americans who
    die of cancer annually. And no one would be
    cured.
  • Source Fojo/Grady, How Much is Life Worth
    Cetuximab, non-small lung cancer, and the 440
    billion question Journal of the National Cancer
    Institute June 29, 2

27
Genotypes and Advanced Breast CA
  • A recent trial of patients with advanced breast
    cancer compared their being treated with
    paclitaxel alone to paclitaxel plus bevacizumab
    (a targeted biologic). Median survival in those
    two arms was virtually indistinguishable 25.2
    months vs. 26.7 months. One could say that
    bevacizumab increased median overall survival by
    six weeks. However, when specific genotypes were
    analyzed there were very marked median
    differences in survival.
  • B.P. Schneider et al. Association of Vascular
    Endothelial Growth Factor and Vascular
    Endothelial Growth Factor Receptor-2 Genetic
    Polymorphisms with Outcome in a Trial of
    Paclitaxel Compared with Paclitaxel Plus
    Bevacizumab in Advanced Breast Cancer ECOG
    2100, Journal of Clinical Oncology 26 (2008)
    4672-78.

28
Genotypes and advanced breast CA
  • If the VEGF genotype of an individual was AA/AA,
    median survival was 49.7 months (7.6 of the
    cohort).
  • But if their VEGF genotype was AA/GA, median
    survival dropped to 30.2 months (11.4 of
    cohort).
  • And individuals with a VEGF genotype of CC/GG had
    a median survival of only 21.7 months (32.9 of
    the cohort).

29
Breast cancer stats
  • 44,000 women die of breast cancer each year in
    the US
  • If all received pacitaxel and bevacizumab,
    aggregate cost for bevacizumab would be 4.4
    billion.
  • If only some were to receive this therapy, what
    justice-relevant considerations should shape our
    choice?
  • Last chance therapy?
  • Medically least well off?
  • Pricelessness of human life?
  • Urgency of need?

30
Who gets bevacizumab?
  • But if we consider cost-effectiveness alone, then
    the AA/AA genotype subgroup has the strongest
    just claim. Each QALY achieved there would cost
    about 50,000, and aggregate costs would be
    reduced to about 350 million. Would the AA/GA
    subgroup have just cause to complain if their
    access to bevacizumab were not socially
    underwritten? They would only gain five months
    in additional life expectancy, which would yield
    a cost per QALY of about 240,000. Aggregate
    costs for bevacizumab would then rise to about 1
    billion. This concession will hardly break the
    bank.
  • How do we know whether the cost of a QALY is
    reasonable? The reference point used most often
    is the cost of a year on dialysis, about 67,000
    in 2009. In the US we currently sustain about
    450,000 individuals on dialysis at that average
    cost level. The implicit moral argument is that
    if we regard that as a reasonable purchase for
    sustaining the lives of patients with end-stage
    renal disease then we ought to be willing to pay
    at least that to sustain the lives of patients
    with other end-stage diseases.

31
Who gets bevacizumab?
  • However, the next genotype subgroup on the list,
    CA/GA, would achieve a median survival of 27.1
    months. This group represented 20.9 of that
    patient cohort and an additional 1 billion in
    costs. This group would gain on average only two
    extra months of life above median survival in the
    paclitaxel alone treatment group, which yields a
    cost per QALY of 600,000.

32
Who gets bevacizumab?
  • To many it might seem reasonable and fair to deny
    these individuals access to bevacizumab at social
    expense. However, we can imagine an
    egalitarian-based argument from those with this
    last genotype. In brief, if society is willing
    to spend 100,000 to prolong the lives of each of
    those AA/GA individuals (same disease as me) for
    a very modest gain in life expectancy, then
    society ought to be willing to spend that same
    100,000 for each of us with the CA/GA genotype.
    We too want as much life as possible of
    acceptable quality, even if it is a bit shorter
    than someone elses.
  • John Harris would make this argument against
    advocates for the use of cost-effectiveness to
    determine which lives to save. He writes, So
    long as people want to live out the rest of their
    lives, however long this may be, or looks like
    being, then they should be given the best chance
    we can give them of doing so and we should not
    choose between such people on any other grounds,
    but treat each as an equal. The Value of Life
    (Oxford, UK Routledge and Kegan Paul, 1985),
    110.

33
Colorectal cancer and cetuximab
  • The European Medical Agency recently approved
    Panitimumab and Cetuximab as first line therapies
    with chemotherapy for patients with metastatic
    colorectal cancer with no mutations in the codon
    12 and 13 of the KRAS gene. Both these drugs
    are extraordinarily expensive more than 100,000
    for a course of treatment. Neither drug will
    effect a cure for the cancer.
  • A. Ruzzo et al. Molecular Predictors of
    Efficacy to Anti-EGFR Agents in Colorectal Cancer
    Patients, Current Cancer Drug Targets 10 (2010)
    68-79.

34
Colorectal cancer and cetuximab
  • If these drugs are given to everyone with
    metastatic colon cancer, then the average gain in
    life expectancy will be a few weeks. If these
    drugs are given only to patients lacking the
    specified mutations, those patients might gain
    two extra years of life. About 40 of these
    patients have a KRAS mutation predictive of
    non-response to these drugs. Another 35--40
    with wild-type KRAS will have an objective
    response to these drugs.
  • E. Van Cutsem et al. Molecular Markers and
    Biological Targeted Therapies in Metastatic
    Colorectal Cancer Expert Opinion and
    Recommendations Derived from the 11th ESMO/World
    Congress on Gastrointestinal Cancer, Barcelona,
    2009, Annals of Oncology 21 (Supplement 6)
    (2010) vi1vi10.

35
Colorectal cancer and cetuximab
  • To put all of this in context, about 55,000
    patients in the US will die of colorectal cancer
    in 2010. If all these patients had access to
    these drugs at 100,000 for a course of
    treatment, that would add about 5.5 billion per
    year to the cost of caring for these patients.
    In theory, several billion dollars could be saved
    if access to these drugs was restricted to
    individuals with a genotype that was most likely
    to be responsive to these drugs (the 35--40
    with wild-type KRAS). It certainly seems such a
    limited choice would be both morally and
    economically reasonable.

36
Colorectal cancer and Cetuximab
  • However, future research will make this more
    morally complicated. Individuals with wild-type
    KRAS do not all show the same objective
    response. Only some will achieve maximal gains
    in life expectancy. Others will only gain extra
    months or a bit more than a year of additional
    life expectancy. We do not know whether
    additional genetic factors identified through
    future research will yield a picture of enhanced
    median survival comparable to what we described
    above in connection with advanced breast cancer.
    Would it be unjust to do the further research
    that will yield more restrictive access to these
    expensive drugs for patients with marginally
    responsive genotypes? What can be said to them,
    morally speaking, that would justify denying them
    that desired benefit? What did we say to the
    patients with advanced breast cancer?

37
Colorectal cancer and Cetuximab
  • Would it be unjust to deny the whole cohort of
    patients access to these drugs at social expense
    who would only gain extra months of life (less
    than a year)? This is again Callahans ragged
    edge. We are faced with rugged moral terrain
    (not just a bump in the terrain) because this
    sort of issue will become ubiquitous as the field
    of pharmacogenetics advances over the next
    decade. The complexity and uncertainty
    associated with the science and clinical judgment
    will allow us to achieve no more than rough
    justice. That in turn raises the question of
    how rough rough justice can be and still be
    just enough.

38
Critical Challenge
  • Might the argument be made that massive social
    expenditures made to forestall individuals
    becoming the medically least well off (reaching
    the end-stages of HIV, or cancer or heart disease
    or COPD etc.) would justify reducing our
    commitment to providing very expensive
    life-prolonging last chance therapies once
    individuals had reached the end-stages of a
    disease process (and could benefit only
    marginally)?
  • This assumes we can identify clear sharp criteria
    for marking this end-stage. But why should
    someone be allowed to die when they are only at
    the beginning of the end-stage??? Isnt the
    morally right thing to wait until they are at the
    end of the end-stage?.....more ragged edge!!!

39
Challenges of Genetics
  • Expect strong pushback from patients denied very
    expensive life-prolonging drugs on the basis of
    genetic tests that predict only marginal gains in
    life expectancy.
  • ARG It is unfair to deny me these
    life-prolonging treatments on the basis of things
    I cannot change about myself (my genotype). If
    anyone should be denied expensive life-prolonging
    care it is those who are responsible for their
    medical problems.

40
ENDLESS NEEDS
  • The message from the prior slides (relative to
    the Just Caring problem) is that needs are
    endless because we have an unending stream of new
    (mostly additive) medical technologies and new
    understandings (limited) of how our bodies react
    at the molecular level to many therapies.
  • These technologies dramatically increase the
    burden of chronic illness
  • No bright line to separate marginal needs from
    morally compelling needs----they are all NEEDS!

41
KEY CLAIMS
  • We need a more just health care system (practices
    and policies and institutional structures) if we
    would want to have more just health outcomes.
  • We need a more just approach to health care
    rationing and priority-setting
  • We need to address the ragged edge problem
    explicitly and thoughtfully.
  • We have to become morally comfortable with rough
    justice.
  • Just health care rationing must be public,
    visible, publicly legitimated, and self-imposed

42
(MORE) KEY CLAIMS
  • Health care rationing does not have to pit one
    group against another
  • Each of us (for lots of reasons) is internally
    conflicted about rationing I dont want to pay
    for expensive marginally beneficial
    life-prolonging health care for a stranger. So
    why should a stranger pay for such care when I
    want it? We are a society of strangers to one
    another.

43
KEY CLAIM
  • I argue that it is through a well-designed
    process of rational democratic deliberation that
    we can collectively, fairly, impartially identify
    and impose upon our future selves fair health
    care rationing protocols (though no one should be
    misled to think such deliberative processes are
    easy to create or maintain.)

44
CONCEPTIONS OF JUSTICE
  • Libertarian/ desert based (ability to pay)
  • Utilitarian greatest good for greatest number/
    aim should be to purchase the greatest amount of
    health possible for a fixed sum of dollars
  • Moderately egalitarian
  • Favor least well off
  • Protect fair equality of opportunity
  • Strict egalitarian
  • PROBLEM We do not have a shared conception of
    health care justice.

45
KEY CLAIM
  • I contend that none of these conceptions of
    justice is capable of addressing all the
    complexities and instantiations of the problem of
    health care rationing.
  • Part of the role of rational democratic
    deliberation is to determine the circumstances in
    which these different conceptions of justice are
    reasonably applied in addressing rationing
    issues.
  • Non-ideally just outcomes are the best we can
    reasonably hope for.

46
WHY DELIBERATION?
  • Empirical complexities and uncertainties of
    contemporary medicine
  • Burdens of judgment how can the empirical and
    moral complexity be managed to yield practical
    conclusions?
  • Lots of possible rationing options/ trade-offs in
    any particular circumstance, no one of which is
    unequivocally morally superior
  • Need a socially legitimated decision to avoid
    arbitrary choices at the clinical level

47
Virtues of Deliberation
  • What we want in any society as the core of
    justice is reciprocity and fair terms of
    cooperation. This is what we seek to articulate
    in detail through a broad deliberative process
    about health care rationing.
  • If I would deny to an 80-yr old (stranger to me)
    with end-stage AD an ICD because it yielded only
    small benefits at high cost, then I ought to deny
    that to my future self as well in end-stage AD.
  • This is what public, self-imposed rationing is.

48
My view Key elements
  • We must be satisfied with non-ideal deliberative
    outcomes
  • We must articulate constitutional principles of
    health care justice, and then we must engage in
    the long term task of balancing these principles
    in relation to each other and in relation to the
    concrete rationing problems they must govern.
  • We must recognize a complex pluralistic
    conception of health care justice
  • We must accept limits of moral theorizing, what
    Rawls calls burdens of judgment

49
My view Key elements
  • We must accept Rawls notion of an overlapping
    consensus as a tool of democratic stability in
    making health care rationing/ priority-setting
    judgments
  • We must use wide reflective equilibrium as a tool
    for disciplining (to a degree) democratic
    deliberations and the constitutional principles
    of health care justice.
  • Conclusion We can construct a democratic
    deliberative process that is morally robust and
    congruent with our liberal pluralistic moral and
    political commitments

50
Good Democratic Deliberation
  • A deliberative democratic procedure is morally
    robust when its outcomes are
  • Sufficiently stable
  • Sufficiently fair/ reciprocal
  • Sufficiently reasonable
  • Sufficiently consistent
  • Sufficiently liberally legitimate
  • Sufficiently determinate

51
Good Democratic Deliberation
  • A deliberative procedure is morally robust when
    its procedure is
  • Sufficiently inclusive of diverse
    voices/perspectives
  • Sufficiently transparent
  • Sufficiently impartial/ unbiased
  • Sufficiently objective/ inclusive of accurate
    scientific information

52
If not RDD, What?
  • Experts? Which experts? Many disciplinary
    perspectives would be relevant to the health care
    rationing problem..would both physicians and
    economists see things the same way faced with
    specific rationing challenges, such as our ICD
    problem?
  • NOTE Expertise of whatever sort will not resolve
    the challenge of conflicting values and balancing
    values in concrete rationing contexts.

53
If not RDD, what?
  • Individual physicians at the bedside?
  • The risk here is that of seriously compromising
    either medical integrity/ patient trust or
    justice (given that it is a common pool of
    resources used to pay for medical care that comes
    from patients).
  • There is also the risk of self-interest, either
    by physicians (whose income may be reduced from
    doing less) or by patients importuning their
    physicians (and ignoring just constraints on
    their rights to that common pool of resources)
  • BUT medical expertise must inform rationing
    protocols and some limited degree of clinical
    flexibility/judgment is needed in the clinic.

54
If not RDD, What?
  • Groups of physicians articulating rationing
    protocols?
  • If all of the same specialty (oncologists or
    cardiologists), then self interest will corrupt
    fairness or reasonableness of the rationing
    protocols. Oncologists believe cancer drugs with
    a cost of 300,000 per QALY are reasonable and
    ought to be supported with social resources.
  • If a mix of specialists, then interest group
    politics prevails along with self-interest
    justice and cost control suffer.

55
If not RDD, what?
  • Let legislators decide rationing protocols?
  • BUT
  • Interest group politics prevails
  • Inflammatory rhetoric subverts reason
  • Partisanship subverts the common good
  • Justice becomes irrelevant
  • Cost control gets accomplished only in the form
    of invisible rationing hidden from public scrutiny

56
If not RDD, What?
  • Let insurers determine rationing protocols?
  • Whose interests are insurers serving?
  • What standards would insurers use to determine
    rationing protocols/ priorities?
  • If cost-effectiveness alone is the standard, then
    what becomes of justice or rights of the
    medically least well off? Think of Gauchers
    patient
  • Let consumers decide by letting insurers offer a
    range of plans with differing rationing protocols
    and prices
  • But this is really regression to health care
    access by ability to pay no fairness here and
    minimal cost control

57
Conclusion
  • Relative to all the prior alternatives, the
    virtue of a properly structured process of
    rational democratic deliberation is that it can
    yield health care rationing protocols and
    priorities that are self-imposed, that are just
    enough, that are reasonable, that are
    democratically legitimate, and that are
    respectful of our liberal, pluralistic
    fundamental political commitments.
  • In addition, if the process has been properly
    structured, no social group will be able to
    impose its will on weaker groups through
    government.

58
The Indeterminacy Objection
  • How would someone committed to this or that
    concept of justice address the problems
    abovelots of disagreement. So why would we
    not expect the same problem in democratic
    deliberations?
  • BUT, ordinary folks are not ideologically
    committed philosophers they are generally more
    open-minded, educable

59
Key to deliberative success
  • Frame a problem that requires public inquiry from
    the beginning, that internalizes a certain value
    conflict WITHIN each deliberative participant.
  • TIAH example (1) Rule of rescue cant just let
    people die create 350,000. (2)But consider cost
    issue, dropped health insurance by employers no
    one gets TIAH affirm equality of all.

60
Key to deliberative success
  • (3) But some very young people go into heart
    failure.a just and compassionate society cannot
    just let them die.produce 100,000. Who sets
    criteria for judging who gets these?
  • (4) Should feds require coverage by all insurance
    companies? Then what other expensive
    life-prolonging devices must get covered?

61
Criticism
  • Are we not back at our indeterminate stage? Not
    exactly, since at least all the proposals
    considered are justified for liberally legitimate
    reasons.
  • Some proposals would not be liberally
    legitimate.deny artificial hearts to HIV pts
    on protease inhibitorsthis violates equal
    respect constitutional principle (especially if
    reason for the denial is that HIV is punishment
    for sin).

62
A democratic proposal
  • If you have multiple just enough, reasonable
    enough proposals after sustained deliberation,
    then use two-tiered voting procedure to get
    determinate outcome.
  • But how do we know this outcome is just? This is
    the domain of non-ideal justice, faced with
    burdens of judgment. Each option requires
    trade-offs.

63
A democratic proposal
  • The outcome of the voting procedure will be
    justice-warranted (not ideally just). It will
    have the virtue of balancing (often) a number of
    conceptions of justice.
  • Major virtue of RDD is that rationing decisions
    are self-imposed. Can those who did not vote for
    winning option claim any injustice? No.no unjust
    use of majoritarian power or rights violations.

64
A democratic proposal
  • Note how vast majority of participants in RDD
    rationing discussion are practically behind a
    veil of ignorance it is very hard for me to be
    reflectively biased toward some set of health
    interventions to distort deliberative process
    since there are so many future possible
    illness/injury states I might endure.

65
Critical Comment
  • Can genetic knowledge corrupt RDD? Not really.
    Imagine I am genetically predisposed to heart
    disease. Do I reduce funding for expensive
    cancer drugs? Do I push for funding 350,000
    artificial hearts? Imagine an approved rationing
    protocol of 100,000 artificial hearts..age 70
    limit.

66
Critical response
  • Pt A genetically vulnerable to heart disease has
    heart attack at age 65..he gets artificial
    heart, and gets cancer at age 72---treated
    successfully.
  • Same pt in Scenario B has heart attack at age 72,
    dies. No TIAH. Has he been treated unjustly?
  • Scenario C Same pt gets ICD at age 67 others
    denied ICD because of T-wave rationing protocol
    (and some die). If he dies at 72 from heart
    failure, then he is following thru on same
    commitment others made to save his life.
    Unfortunate outcome but not unjust.
  • Core element of justice is reciprocity

67
Objections to RDD
  • Democratic deliberation cannot change minds
    individuals have beliefs integrated into a
    complex web of beliefs and commitments that are
    mutually supportive, thereby making it very
    difficult to give up a major belief (such as a
    belief related to the value of human life).
  • For a critical assessment of this view see Gerry
    Mackie, Does democratic deliberation change
    minds? Politics, Philosophy and Economics 5
    (2006) 279-303.
  • Minds do change think civil rights and
    environmental issues BUT deliberation must be
    sustained over long periods to be effective on
    major policy issues. One time conversations will
    have little effect. Must create internal moral
    conflict.

68
Objections to RDD
  • Cass Sunstein raises the polarization
    objection What makes us so confident that the
    deliberative process will yield consensus or
    compromise? Is there not lots of empirical
    evidence that opinions harden, take the form of
    deliberative enclaves and move further to the
    poles?

69
Objections to RDD
  • How do you correct for unjust rationing
    decisions that might emerge from the
    deliberative process?
  • How do you recognize an unjust decision when you
    are choosing among non-ideally just options to
    begin with?

70
Objections to RDD
  • How do you avoid the creation of coalitions that
    would dominate or distort the deliberative
    process? That is, how do you avoid all the
    faults and failings of interest group politics?

71
Objections to RDD
  • How can the deliberative process deliver outcomes
    just rationing/ priority-setting judgments that
    are morally robust and morally reliable? Zeke
    Emanuel (1991) will argue there are many
    reasonable conceptions of justice. If we favor
    any one of them in the deliberative, then we are
    not true to our liberal pluralistic commitments.
    If we favor none, deliberation is interminable.
  • If we allow the political winds to favor this or
    that conception of justice at a point in time
    regarding a concrete rationing decision, then we
    risk moral inconsistency.

72
Objections to RDD
  • Daniels (1993) democracy objection Can the
    deliberative process yield outcomes that are
    unjust and that we can recognize as unjust? If
    so, then there is a substantive conception of
    health care justice outside the deliberative
    process that makes the process otiose. On the
    other hand, if no outside standard of justice,
    then all outcomes of the deliberative process
    must be accepted as procedurally just. Neither
    of these outcomes seems acceptable.

73
Objections to RDD
  • Assuming that we have just outcomes from the
    deliberative process, how is the integrity of
    that judgment supposed to be protected from the
    corrupting effects of the normal process of
    legitimation through legislative bodies, i.e.,
    interest group politics? If the integrity of the
    outcome cannot be protected, then it would be
    reasonable to ask what the point of the
    deliberative process was.

74
CONCLUDING PRACTICAL PROPOSAL
  • It is probably necessary to bypass normal
    legislative processes Lesson from Oregon
  • We can imagine large regional insurers in the US
    (covering 5 million lives) with representative
    citizen deliberative boards charged with
    determining plan-specific rationing protocols and
    priorities.
  • This might work if there were an overall national
    determination of a comprehensive package of
    health benefits guaranteed to all in our society
  • AND a NICE-like entity to do efficient
    comparative-effectiveness and cost-effectiveness
    analyses

75
CONCLUDING PRACTICAL PROPOSAL
  • There could be differences from one regional
    insurer to another, but these would be
    differences about marginally beneficial
    non-costworthy health services to which no one
    had a presumptive just claim. Hence, individuals
    might be treated marginally differently from one
    plan to another but those are not
    justice-significant differences
  • Though this representative body in each plan
    would have decisional authority, we would still
    want very broad informed deliberation accessible
    to all in the plan (and a mechanism for
    expressing their judgments to the deliberative
    board).

76
CONCLUDING PRACTICAL PROPOSAL
  • I have listed elsewhere fifteen criteria that can
    be used to assess the quality and legitimacy of
    any concrete deliberative process, such as I
    imagine these Boards engaging in.
  • See my essay Creating public conversations about
    behavioral genetics, in Wrestling with
    Behavioral Genetics Science, Ethics, and Public
    Conversation (Johns Hopkins University Press,
    2006), 257-85.
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