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 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