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

How well do we care for the dying?

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’

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

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)

 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

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

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

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

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, 2011:115)

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)

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.

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

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?

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

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

 “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, 2009:480)

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

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

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

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

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, 2011: )

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.

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)

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.