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Justice and End of Life Care

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Justice and End of Life Care Nuala Kenny SC, OC, MD, FRCP Emeritus Professor Department of Bioethics Dalhousie University, Halifax, NS Ethics & Health Policy Advisor – PowerPoint PPT presentation

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Title: Justice and End of Life Care


1
Justice and End of Life Care
  • Nuala Kenny SC, OC, MD, FRCP
  • Emeritus Professor
  • Department of Bioethics
  • Dalhousie University, Halifax, NS
  • Ethics Health Policy Advisor
  • Catholic Health Alliance of Canada
  • Ottawa, Ontario

2
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3
How well do we care for the dying?

4
Why Are We Not There?
  • Elements of a Good Death are contained within
    the goals of hospice/palliative care
  • Assist with pain symptom control
  • Assist with personal last things

5
Issues to Consider
  • Expenditures at EOL
  • The value of life at EOL
  • The limits of medicine
  • The failure to do good EOL planning
  • Hospice/palliative care benefits regarding both
    care and cost need dissemination

6
Expenditures at EOL
  • In the United States 10-12 of the overall health
    budget and 27- 30 of Medicare costs are
    attributable to 5 of beneficiaries who die each
    year. One third is spent in the last month of
    life.
  • Canadian researchers found that 21.3 of health
    care costs are in the final six months of life.
    (Fassbender et al, 2009)

7
  • Most of these costs relate to life-sustaining
    care with ventilator and resuscitation in the
    final thirty days of life accounting for 1/3 of
    costs in the final year of life
  • (Zhang et al, 2009)
  • But also to expensive/aggressive care in the face
    of inevitable dying

8
Is This Justice at EOL?
  • Justice as Fairness
  • Giving persons their due
  • Basic approaches
  • Equality-treat everyone the same
  • Equity-treat all the same, taking into account
    substantive differences

9
What Justice?
  • Distributive-fair share
  • Social-inclusion and voice
  • Restorative justice-right relationships
  • Intergenerational justice
  • justice and fairness between young, old and the
    in-between
  • justice across lifetimes
  • justice for here and now persons and future
    generations

10
My Focus
  • Justice as voice, empowerment and advocacy
  • Justice as a fair share of common resources
  • Justice as having real and meaningful options at
    end of life

11
Justice as Voice Empowerment
  • Difficulties in having EOL/ACP discussions with
    patients
  • three groups of obstacles
  • medical and health policy, physician values
    and hospital practices, and patient and family
    values
  • (Callahan, 2011115)

12
Promoting Respect for Patient Autonomy in
Decisions
  • Informed Choice
  • Advance Care Planning
  • an ongoing process, giving patients an
    opportunity to consider, discuss and plan
    end-of-life care, with the intention of
    alleviating potential worries and concerns, and
    enabling patients to prepare for a potential
    deterioration in health.
  • (Barnes, et al., 2007, p. 23)

13
Advance Care Planning
  • Involves three separate activities
  • clarification by the patient of their values and
    hopes for care when death is inevitable
  • communication of values and hopes to loved ones
    and caregivers and
  • the enactment of a directive, instructional or
    proxy for decision-making if the patient becomes
    incapable of decision-making.

14
Justice as Advocacy
  • Unfortunately in end-of-life care, we do not
    have a vocal constituency The dead are no longer
    here to speak, the dying often cannot speak and
    the bereaved are often too overcome by their loss
    to speak
  • Harvey Chochinov testimony to Senate, 2000

15
Justice as a Fair Share of Common Resources at EOL
  • How fair is the present allocation?
  • How fair is demand for excessive expenditures for
    small life-prolongation in inevitable dying?
  • What is a fair allocation to the goals of
    hospice/palliative care at EOL?

16
Problems
  • Costs for aggressive care at EOL
  • Evidence re EOL/ACP discussions and better care
    at lower costs
  • Of persons with advance directives, 93 were
    willing to use limited care
  • Silveira et.al.
  • Knowing the real costs of hospice palliative
    care

17
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18
Increasingly Aggressive Cancer Rx
  • Avastin-colorectal- adds 1.5mos at 72,000/ YoL
  • Erbitux-lung cancer-800,000/YoL
  • Provenge-prostate-

19
  • Patients with advanced cancer who reported
    having EOL conversations with physicians had
    significantly lower health care costs in their
    final week of life. Higher costs were associated
    with worse quality of death. (Zhang et al,
    2009480)

20
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21
Organ Failure
  • LVAD in Stage IV CHF 200,000 adds 1-2yrs but
    heart will then fail
  • Do all deserve an implantable artificial heart?
  • Dialysis in persons over 85

22
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23
Frailty and Dementia
  • surgical interventions in 80 90 yr olds with
    complex cardiac and non-cardiac procedures
  • Increasingly complex and costly interventions in
    persons with dementias

24
Cost-Effectiveness Analysis
  • One scale of value attempt to quantify for
    comparison
  • Combines individual pieces of value into
    aggregate wholes
  • Misses key issues severity of illness,
    lifesaving in the face of death, maintenance of
    hope and assurance of treatment

25
Hope
  • Used to justify aggressive interventions
  • Focused almost exclusively on prolongation of
    life
  • Dangers of false hope
  • Failure to address the situation
  • Failure to do meaning-making

26
Hope can have multiple objects
  • biological survival, a good death, a good life
    after life,
  • hope carries distinct dangers and monetary costs
  • the most resilient forms of hope are about
    making sense. (Menzel, 2011219-220)

27
Insurance Effect/Moral Hazard
  • Moral hazard is the situation in which a party
    insulated from risk behaves differently they how
    they would if they assumed all risks.
  • When moral hazard meets a market mentality in the
    context of fear of death, a perfect storm of
    demand ensues.

28
Value of life at end of life
  • Additional life at end of life does indeed have
    value disproportionate to its length. It is
    important to see that it does, and why it does,
    so that we do not follow a crude, uniform
    cost-effectiveness formula that glosses over real
    variations in value.
  • It is equally important, however, that we allow
    neither the emotional power and sympathy that
    surrounds and suffuses the end of life nor the
    insurance effect to lead us into a functionally
    blind acceptance of high value beyond all demands
    and desires for life extending care at the end of
    life.
  • (Menzel, 2011 222)

29
Justice as Having Real and Meaningful Options
  • How high a priority for resources to care of the
    dying?
  • Philosophical and funding differences between
    hospice and palliative care.
  • Socio-economic and cultural differences
  • Privatization (profitization) of hospice
  • Significant inequity for rural patients and
    families.
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