1. The Ethical Challenges in Organ Donation and Transplantation 8 th Annual Bioethics and Palliative Care Conference Margaret Allee, RN, MS, MSN, JD November 7, 2014

2. Disclosure Slide OBTAIN FROM OHSU Margaret Allee, RN, MS, MSN, JD has no relevant financial relationships to disclose that would present a conflict of interest

3. Objectives Participants will be able to: Identify the ethical principles associated with organ donation/transplantation Describe acceptable and unacceptable criteria for the allocation of scarce resources Explain why the application of ethical principles is critical in the allocation of organs

4. The goal of saving an individual has to be balanced against concern for the social good and the wish to preserve such basic values as: - justice - fairness - human dignity - bodily integrity

5. Organ transplantation depends on its very existence on a unique trust between society and physicians, and on the willingness of ordinary people to share their organs and tissue.

6. Transplantation is steeped in: Religions and cultural values of atruism Sacrifice and generosity Political notions of:community reciprocity shared risk social solidarity But there are also deep contradictions

7. “Organ transplantation is both lifesaving and death-ridden. The so-called gift of life most often demands a counter gift, a ‘gift of death’ from the donor or his or her next of kin.” Renée Fox Bioethisist

8. Behind the death-defying scenes of transplantation is a life and death struggle for scarce organs.

9. The Gap between Ideology and Practice has widened: Tissues and organs can be bought and sold in some parts of the world Proposals have been made to allow financial compensation for donors or their families There are inequities in access to transplant medicine and in regional distribution of organs Living donation is at the forefront, but not without risk and unnecessary deaths

10. WHAT ARE SOME OF THE PRESSING ETHICAL ISSUES? Organ Availability Patient Access Prisoners and Transplant Organ Trafficking Medical Errors and Truth Telling Therapeutic Cloning Allocation of Scarce Resources

11. BOTTOM LINE There are not enough organs available to meet the current demand And there is controversy in how the limited number of organs should be allocated.

12. Patients die - - Ethical issues arise out of desperation to prevent death occurring

13. How do we Allocate Scarce Resources Who shall live? Who shall decide?

14. Definition of Scarce Resources Resources or “the use of resources that, because of naturally limited supply or economic constraints, are not readily available to all who need them.” Council on Ethical & Judicial Affairs American Medical Association

15. Traditional medical practice has its foundation in the principles of doing no harm, acting for the good of patients and caring for all of those who come in need The ethical practice of allocation of scarce resources, may require the thoughtful practitioner to violate these central moral tenets

16. Acceptable Criteria for Resource Allocation 1.The likelihood of benefit to the patient 2.The impact of treatment in improving the quality of the patient’s life 3.The duration of benefit 4.The urgency of the patient’s condition (i.e.: how close is the patient to death) 5.The amount of resources required for successful treatment

17. Each of these five criteria serve to maximize the following three goals of medical treatment: 1.Number of lives saved 2.Number of years of life saved 3.Improvement in quality of life

18. Likelihood of Benefit Giving priority to patients with a greater likelihood of benefiting from treatment is necessary for any efficient use of medical resources - Maximizes number of lives saved as well as length and quality of life -Care that has a low likelihood of benefit must be distinguished from care that is truly futile (care that cannot be expected to have any physiologic benefit)

19. Change in Quality of Life Benefit to patient will be maximized if treatment is provided to those who will have the greatest improvement in quality of life Deciding on a standard definition is dependent on patient individual values Focus on functional status allows for objective measure of QOL

20. Duration of Benefit The length of time a patient benefits from treatment can, in certain situations, be an appropriate consideration in maximizing overall benefit - Limited to life expectancy but not an absolute consideration -Based on patient’s own medical history and prognosis, not aggregate statistics or membership in a group

21. Urgency of Need Prioritizing patients according to how long they can survive without treatment can help achieve the goal of maximizing the number of lives saved, depending on type of resource involved -Important consideration but must be tempered with other criterion - Preventing death (by treating urgency first) should generally be given priority in allocation decisions -But not if the life saved would be of extremely poor quality or extremely short duration

22. Amount of Resources Requested On occasion - assigning higher priority to patients who will need less of a scarce resource maximizes the number of lives saved

23. Inappropriate Criteria for Resource Allocation Often used, but considered ethically unacceptable 1. Ability to pay 2. Contribution of the patient to society (social worth) 3. Perceived obstacles to treatment 4. Contribution of the patient to his or her own medical condition 5. Past use of resources

24. Allocation Mechanisms Should Be - Objective - Flexible - Consistent

25. Objectivity The need for the decision makers not to be personally involved with patients competing for a scarce resource

26. Flexibility Requires decision makers to weigh carefully all relevant facts of a case, and not reflexively apply a blanket rule, such as an age cap to all cases

27. Consistency Requires decision makers to consider the same (appropriate) criteria, interpreted in the same way, to ensure that all decisions are fair to the patients involved

29. Three Basic Ethical Concepts in the Allocation of Scarce Resources -Utility -Justice -Autonomy

30. Utility Utility holds that an action or practice tends to be right if it results in as much or more aggregate good than any alternative action or practice - It requires calculating the net benefit of the use of a resource for each person affected and summing the benefit over the number of total persons affected

31. Utility ( Continued ) In rationing scarce medical resources, it is morally imperative to consider medical utility, understood as maximization of the welfare of patients in need of treatment

32. Justice Issues of allocation are, at their core, issues of justice and distributive justice - Being just is consistent with the principles of Moral Right Equality Fairness

33. Justice ( Continued ) Is a primary concept for the allocation of scarce resources - A concept of fairness, proportionate to needs, to ensure that all are treated equally - It refers to fairness in the distribution of benefits and burdens of an allocation program - But - What is fair?

34. Justice ( Continued ) “For decisions to be just the process by which the decision is made must be a just one.” Tony Hope Journal of Medical Ethics, 2001, 27:179

35. Equal access to care is based on the concepts of equality and justice, wherein all persons must be able to compete on an equal footing for the opportunities that society offers, however, no rights are absolute Equal Access to Care

36. These rights are conditioned by the presumptions that we, as individuals, have no control over our genetic inheritance, over our susceptibility to disease, or to the way our organs function or the body reacts to certain chemicals and conditions

37. Autonomy Autonomy is seen as both a moral principle and a psychological state - Persons want to make their own decisions and are, thus, autonomous

38. If a resource, such as an organ, becomes available and the person is best-qualified by the principles of utility and justice to receive the resource (organ), and they decide to turn the opportunity down for whatever reason, they shall have exercised the principle of autonomy Autonomy ( Continued )

39. Clinical Considerations in Conflict The concepts of Utility, Justice and Autonomy are not without conflict

40. Patient survival Survival of the resource Psychological state of the patient Quality of life Age Availability of alternative treatments Utility Must Consider

41. Medical urgency of the patient Likelihood of finding or accessing the resource in the future Waiting times First versus repeat resource utilization Efficacy of the use of the resource Fairness and Justice Must Consider

42. The issue of the right of the individual to refuse the resource Free exchanges among autonomous individuals Allocation of the resource - such as through directed donation The voluntary behaviors of potential recipients Autonomy Must Consider

43. In Summary Decisions should respect individuality Ethically appropriate criteria must be used Decision making must be objective, flexible and consistent Patients need to be informed of criteria Patients need realistic expectations