Patients without Spokespersons

1. Patients without Spokespersons Ethics Champions Program January 6, 2010 John F. Wallenhorst, Ph.D. Vice President, Mission & Ethics Bon Secours Health System

2. 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

3. 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

4. Patient Autonomy Right to make one’s own informed decisions about treatment.

5. Patient Autonomy • Competent and free • Information and understanding • Decision and authorization Principle of informed consent.

6. Principle of Informed Consent • The right and responsibility of every competent person to advance his or her own welfare

7. 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

8. 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

9. 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.

10. 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

11. 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

12. Decision-Making Philosophical, theological and legal bias in favor of acknowledging capacity and honoring personal decisions.

13. Decision-Making Putting the person’s preferences at the center of deliberation. Reflection of values, beliefs, personality, culture, lifestyle.

14. Catholic Health Care • Dignity of the Person • Justice • Prudence • Benefit - Burden

15. Catholic Health Care • Ethical & Religious Directives • Part Three: The Professional-Patient Relationship • Promote mutual respect, trust, honesty • Avoid manipulation, intimidation, condescension • Directives 26-28 • Free and informed consent • Benefit – burden calculation

16. Adequate Disclosure Standard • Carefully apply “adequate disclosure” standard • Diagnosis • Nature and purpose of treatment • Risks of treatment • Treatment alternatives

17. Best Interests Standard • Aware of “best interests” standard • Current level of functioning • Degree of pain • Amount of dependence, humiliation or offense against human dignity • Life expectancy and chance of recovery • Treatment options • Risks and benefits of treatment

18. Ethical Issues • Sometimes evaluation of capacity is not completely clear • A continuum of vulnerability • Potentially • Circumstantially • Temporarily • Episodically • Permanently

19. Ethical Issues • Impossible to delineate all imaginable scenarios • Professional judgment and personal ethical reflection are almost always required

20. 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

21. 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

22. 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

23. Back to Mr. Smith • What are the key ethical issues? • What are the alternatives? • What support mechanisms are there? • What do you do?

24. About Holistic Care • Based on respect • Context of loving relationships • Acknowledging moral ambiguity • Rarely easy, expedient, clear

25. Questions & Conversation