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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