1. Medical Ethics: Core Guidelines for an Evolving Science Ralph Bramucci, PhD Ralph Bramucci, PhD Bob Zylstra, EdD, LCSW John Tuohey, PhD John Tuohey, PhD

2. Ethics Consultation Typical Issues Addressed 1. Beginning of life decisions (e.g., abortion, the use of reproductive technologies) 2. End of life decisions (e.g., withholding or withdrawing treatment, euthanasia, assisted suicide) 3. Organ donation and transplantation 4. Genetic testing

3. Ethics Consultation The Goal – A consensus agreement among all parties If consensus cannot be reached … - Determine who should be allowed to make the decision. - If can’t be determined resort to - Institutional policy - Court intervention

4. Bioethics The term “bioethics” was coined in 1971. This defined a newly emerging discipline, to address the new “should we” questions that were arising, due to changes in science and in the practice of medicine

5. Impact of Technology on Bioethics Landmark Cases Karen Quinlan, 1954 – 1985 Nancy Cruzan, 1957-1990 Terry Shiavo, 1963 - 2005

6. Karen Quinlan, 1954 - 1985 The original “Right to Die” case The original “Right to Die” case April 1975 – Friends found her “not breathing” following an apparent drug/alcohol overdose. She never regained consciousness. April 1975 – Friends found her “not breathing” following an apparent drug/alcohol overdose. She never regained consciousness. After 3 months, her family requested that Nancy’s respirator be removed. Her physician refused. After 3 months, her family requested that Nancy’s respirator be removed. Her physician refused. January 1976 – the New Jersey Supreme Court rules that the right to privacy was broad enough to allow families to let their irreversibly unconscious relatives die January 1976 – the New Jersey Supreme Court rules that the right to privacy was broad enough to allow families to let their irreversibly unconscious relatives die June 1976 – Karen is transferred to a nursing home, where she was declared dead in June, 1986 June 1976 – Karen is transferred to a nursing home, where she was declared dead in June, 1986

7. Nancy Cruzan, 1957-1990 January, 1983 – Nancy sustains a prolonged cardiac arrest during an auto accident. She never regains consciousness, but is able to continue breathing on her own. January, 1983 – Nancy sustains a prolonged cardiac arrest during an auto accident. She never regains consciousness, but is able to continue breathing on her own. 1988 – Nancy’s parents ask that her feeding tube be removed. The hospital refuses. 1988 – Nancy’s parents ask that her feeding tube be removed. The hospital refuses. 1990 – The United States Supreme Court rules that competent adults have a “liberty interest” that allows them to accept or refuse medical treatments. 1990 – The United States Supreme Court rules that competent adults have a “liberty interest” that allows them to accept or refuse medical treatments.

9. Terry Shiavo, 1963 - 2005 1990 - Terry experiences a cardiac arrest which results in what has arguably been referred to as a “persistent vegetative state” 1990 - Terry experiences a cardiac arrest which results in what has arguably been referred to as a “persistent vegetative state” 1998 – Terry’s parents contest her husband’s request to remove her feeding tube. 1998 – Terry’s parents contest her husband’s request to remove her feeding tube. 2005 – After more than 30 rulings in state and federal courts, the court orders on 3/18 that Terry’s feeding tube be removed. She dies 4/1. 2005 – After more than 30 rulings in state and federal courts, the court orders on 3/18 that Terry’s feeding tube be removed. She dies 4/1.

10. Principles of Medical Ethics Beneficence – doing what is best for the patient Beneficence – doing what is best for the patient Non-maleficence – avoiding harm Non-maleficence – avoiding harm Autonomy – patient’s right to make decisions Autonomy – patient’s right to make decisions Justice – doing what is fair for all Justice – doing what is fair for all

11. Clinical Ethics (Jonsen, Siegler & Winslade) “The Four Box Method” Medical Indications Patient Preferences Quality of LifeContextual Features Quality of LifeContextual Features

12. Medical Indications 1. What is the patient’s problem? History? Diagnosis? Prognosis? 2. Is the problem acute? Chronic? Critical? Emergent? Reversible? 3. What are the goals of treatment? 4. What are the probabilities of success? 5. What are the plans in case of therapeutic failure? 6. In sum, how can this patient be benefited by medical and nursing care, and how can harm be avoided?

13. Patient Preferences 1. What has the patient expressed about preferences for treatment? 2. Has the patient been informed of benefits and risks, understood and given consent? 3. Is the patient mentally capable and legally competent? 4. Has the patient expressed prior preferences (e.g., Advance directives)? 5. If incapacitated, who is appropriate surrogate? 6. Is patient unwilling or unable to cooperate with treatment? If so, why? 7. In sum, is the patient’s right to choose being respected to the extend possible in ethics and law?

14. Quality of Life 1. What are the prospects, with or without treatment, for a return to patient’s normal life? 2. Are there biases that might prejudice provider’s evaluation of patient’s quality of life? 3. What physical, mental and social deficits is patient likely to experience if treatment succeeds? 4. Is patient’s present or future condition such that continued life might be judged undesirable by them? 5. Is there any plan and rationale to forgo treatment? 6. What plans are there for comfort and palliative care?

15. Contextual Features 1. Are there family issues that might influence treatment decisions? 2. Are there provider issues that might influence treatment decisions? 3. Are there financial and economic factors? 4. Are there religious and/or cultural factors? 5. Are there problems of resource allocation? 6. What are the legal implications of treatment decisions? 7. Is clinical research or teaching involved? 8. Are there any provider or institutional conflicts of interest?

16. References/Suggested Reading Jonsen AR, Siegler M, Winslade WJ. Clinical Ethics, 4 th ed. New York, NY: McGraw-Hill, 1998. Wheeler SE. Stewards of Life: Bioethics and Pastoral Care. Nashville, TN: Abingdon Press, 1996. www.tba.org/news/hcda

17. Case History #1 90 y/o woman admitted due to right leg burn from a heater. Has a history of Parkinson’s, is malnourished, and lives at home with a granddaughter. She aspirates and develops pneumonia shortly after admission and family consents to intubation. Two weeks later, after no improvement, family wants the patient’s ventilator d/c saying she would not have wanted to live this way. The medical team, however, does not want to withdraw ventilator support arguing that the patient is not terminal. 90 y/o woman admitted due to right leg burn from a heater. Has a history of Parkinson’s, is malnourished, and lives at home with a granddaughter. She aspirates and develops pneumonia shortly after admission and family consents to intubation. Two weeks later, after no improvement, family wants the patient’s ventilator d/c saying she would not have wanted to live this way. The medical team, however, does not want to withdraw ventilator support arguing that the patient is not terminal.

18. Case History #2 19 y/o man admitted with severe brain injuries following a car accident. Poor prognosis was communicated to the family – mother and stepfather – who agree that further aggressive intervention is futile. The mother, however wants to pursue sperm donation. The physician wants to know if he’s responsible for keeping the patient perfused until the donation issue is addressed and whether the mother has the ethical right to request the sperm without the patient’s consent. The patient does have a fiancée, however she apparently does not have a part in the sperm request. 19 y/o man admitted with severe brain injuries following a car accident. Poor prognosis was communicated to the family – mother and stepfather – who agree that further aggressive intervention is futile. The mother, however wants to pursue sperm donation. The physician wants to know if he’s responsible for keeping the patient perfused until the donation issue is addressed and whether the mother has the ethical right to request the sperm without the patient’s consent. The patient does have a fiancée, however she apparently does not have a part in the sperm request.