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1
Patients without Spokespersons
Ethics Champions ProgramJanuary 6, 2010
John F. Wallenhorst, Ph.D.Vice President, Mission & Ethics
Bon Secours Health System
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Purpose
Discuss some of the ethical issues related to care for patients without spokespersons
Relate those issues to patient self-determination, autonomy, and special protection for vulnerable persons
Explore practical applications for the Catholic health ministry
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Case Study – Mr. Smith 74 year-old man hospitalized for respiratory
distress; multiple chronic medical problems Recurrent aspiration; need for suctioning and
intubation Refuses feeding tube, but asks for a normal diet Would like to go home, but there is no one to care
for him No family or known friends No nursing home will accept him in his current
condition
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Patient Autonomy
Right to make one’s own informed decisions about treatment.
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Patient Autonomy Competent and free Information and understanding Decision and authorization
Principle of informed consent.
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Principle of Informed Consent The right and responsibility of every
competent person to advance his or her own welfare
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Self-Determination in Health Care Persons have the right to make decisions
and provide informed consent about the medical treatment they receive
Based on philosophical and theological grounds for respecting the autonomy and dignity of persons
Protected by law Common law Patient Self-Determination Act, 1990
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Patient Self-Determination Act Organizational structures for protecting
patient self-determination Specific acknowledgement of right to:
Guide health care decision making Accept or refuse treatment Make an advance health care directive
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Decision-Making Capacity Ability to express choice Ability to understand information Ability to understand one’s situation Ability to weigh information
Situation-specific
Not the same as legal competency.
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Other Forms of Consent Presumed
In rare, emergent situations in which person is unconscious or otherwise does not have capacity
Limited to those medical interventions that cannot be safely postponed
Vicarious Incompetent or incapacitated persons Regulated by state and federal laws
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Special Considerations Psychiatric Evaluation
Best interests of patient Possibly more than one evaluation
Conservatorship Probate court appointed Best interests of patient Given specific levels of authority Reviewed periodically Special review for psychiatric care
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Decision-Making
Philosophical, theological and legal bias
in favor of acknowledging capacity
and
honoring personal decisions.
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Decision-Making
Putting the person’s preferences at
the center of deliberation.
Reflection of values, beliefs,
personality, culture, lifestyle.
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Catholic Health Care
Dignity of the Person Justice Prudence Benefit - Burden
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Catholic Health Care
Ethical & Religious DirectivesPart Three: The Professional-Patient RelationshipPromote mutual respect, trust, honestyAvoid manipulation, intimidation, condescensionDirectives 26-28
Free and informed consentBenefit – burden calculation
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Adequate Disclosure Standard
Carefully apply “adequate disclosure” standardDiagnosisNature and purpose of treatmentRisks of treatmentTreatment alternatives
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Best Interests Standard
Aware of “best interests” standardCurrent level of functioningDegree of painAmount of dependence, humiliation or offense
against human dignityLife expectancy and chance of recoveryTreatment optionsRisks and benefits of treatment
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Ethical Issues Sometimes evaluation of capacity is not
completely clear A continuum of vulnerability
Potentially Circumstantially Temporarily Episodically Permanently
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Ethical Issues Impossible to delineate all imaginable
scenarios Professional judgment and personal ethical
reflection are almost always required
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Some Cases 63 year old man on vent with stage four
cancer Disagreements among family members,
physicians, ethics committee members
27 year old woman with paraplegia and history of drug addiction Dropped at ER; no resources; no diagnosis
warranting admission
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Some Practical Rules of Thumb Maintaining personal dignity Bias in favor of honoring the person’s choice Building relationships that support
discussion and sound decision-making Full care team, including Pastoral Care
Acknowledging that care is not simply about medical treatment/intervention
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Some Practical Rules of Thumb Avoiding paternalism Avoiding applying one’s own preferences Prudently using ethics committees/consult
teams Involvement of Social Worker, community
resources, and other support networks
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Back to Mr. Smith
What are the key ethical issues? What are the alternatives? What support mechanisms are there? What do you do?
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About Holistic Care
Based on respect Context of loving relationships Acknowledging moral ambiguity Rarely easy, expedient, clear
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Questions & Conversation