1. Kyle Galbraith, PhD February 16, 2015

2.  What is ethics and why does it matter?  What are common approaches to “doing” ethics?  What ethical principles guide patient care and clinical research?  Topic-focused, as time allows.

3. Ethics is NOT:  “You have your opinion, I have mine.”  “Well, the law says...”  “Most people agree…”

4. Ethics as critical reflection on:  Our goals as individuals, families, communities, professionals;  Our standards for making judgments;  Above all, ethics is about being able to give thoughtful reasons for our actions.

5.  Four primary approaches to ethical reasoning: Ends-based (Teleological) Rule-based (Deontological) Virtue-based Appeals to Principles

6.  Teleological: Gk. telos, meaning end/goal.  Action judged based on outcome, not the act itself.  Cost/benefit analysis

7.  Deontological: Gk. deon, meaning duty.  Action judged based on how it adheres to proper rules.  Emphasis on rationality, universality, lack of self-interest.

8.  Emphasis on personal character— not rules or isolated acts.  Virtue as a matter of habit/practice.  What is “good” is that which makes me who I want to be.

9.  Similar to virtues.  Actions/Decisions flow from commitment to shared ideals.  Primary mode of ethics in healthcare and research.

10.  Autonomy  Beneficence  Nonmaleficence  Justice

11.  Auto (self) / Nomos (law)…in the clinic, it means:  Patients have the right to make medical decisions for themselves—within certain limits.  Informed consent is crucial for both clinical care and research.  Participation in research is voluntary.  Additional protections in place for those who may have diminished autonomy.

12.  Actions should benefit the patient…actively promote good, avoid bad.  Limited duty  In research: standard of care provided to control subjects, when possible.  Study risks should be commensurate with anticipated benefits.

13.  “First, do no harm.”  Refrain from ineffective treatments.  Also a limited duty.  Promotion of professional competence.

14.  Usu. structural concern, but plays out in one- on-one situations.  How are healthcare goods distributed? What’s the standard?  In research: equitable subject selection.  Risks/Benefits of research are distributed fairly.

15.  Since 1992, Joint Commission requires every hospital to have a mechanism for addressing ethical concerns of patients and employees. Ethics committee Ethics consultation service Formal ethics forum

16.  Ethics consultants in 81% of American hospitals and 100% of hospitals with >400 beds. 1  0.16% (~1 in 600) of all hospital admissions result in an ethics consult. 2  Begun in late 1950’s/early 60’s.

17.  Medical decision-making (including right-to-refuse), Do-Not-Resuscitate  Organ transplant facts  Anything else that interests you!  What are the ethical principles at play in these areas?

18.  YOU are in charge of your body. In general, YOU decide happens to you, provided you have the capacity to make decisions.  This DOES NOT mean that a physician is obligated to do whatever you ask.

19. 4 basic elements of the capacity to make medical decisions: 1. Understanding of the facts—Do you know what is going on? 2. Appreciation—Do you recognize the significance of your situation? 3. Reasoning—Can you give reasons for your decision/preferences, esp. in consideration of alternatives? 4. Choice—Can you express your wishes? Grisso, Tom and Paul A. Appelbaum, 1998. The Assessment of Decision-Making Capacity: A Guide for Physicians and Other Health Professionals, Oxford: Oxford University Press.

20.  Allows someone else to make medical decisions on behalf of someone who lacks decisional capacity.  Usu. only needed when one does not have a designated healthcare decision- maker or advance directive.  Decisions made in consult w/treating physician.

21. In order of standing: 1. Patient’s guardian; 2. Spouse; 3. Adult son or daughter; 4. Either parent; 5. Adult sibling; 6. Adult grandchild 7. Close friend of the patient; 8. Guardian of the estate.

22.  For previously competent adult, surrogate is to make decisions consistent w/values and preferences of the patient, if known.  If unknown (and for minors), decisions are to be in the “best interest” of the patient.

23.  “Do Not Attempt Resuscitation” (DNR) orders are medical orders. Historically, DNR orders limited to cardiopulmonary resuscitation (CPR) when heart stops or breathing stops. Written by a doctor. A doctor is not required to attempt CPR in every circumstance.

24.  Illinois one of 42 states to develop a “Practitioner Orders for Life-Sustaining Treatment” (POLST) document.  Allows pts. to clearly document their wishes in the event of a medical emergency.  Intended to work with a Healthcare Power of Attorney designation, not as a replacement.  Can be revised at any time.  www.polstil.org www.polstil.org

25.  Organs: Heart, lungs, liver, pancreas, kidneys, intestine, thymus.  2014: 27,036 organ transplants in the United States.  From 21,780 deceased donations, 5,256 living donations  13,125 total donors  990 organ transplants in Illinois for 2014  Patients assigned to the United Network for Organ Sharing (UNOS) waiting list.  12 IL facilities listed as providing organ transplants.  Currently, 123,234 patients on the UNOS waiting list. 77,919 active waiting list candidates.

26.  Selection based on multiple criteria, including: Time on the waiting list Severity of illness Proximity to available organ Facility’s organ donation/acceptance ratio Patient’s history of non-compliance Support system availability to patient post-transplant  $ not an exclusion criteria, but transplants can result in up to $250K/yr. additional expenses. Organ Procurement and Transplantation Network. Online: http://optn.transplant.hrsa.gov/.http://optn.transplant.hrsa.gov/ United Network for Organ Sharing. Online: http://www.unos.orghttp://www.unos.org

27. Thank You!