Deciding About the Universal Benefits Package

1. Deciding About the Universal Benefits Package Ezekiel J. Emanuel, M.D., Ph.D. Department of Clinical BioethicsWarren G. Magnuson Clinical Center National Institutes of Health

2. Preliminary Observations • All health care systems in developed countries face the same set of problems: They are: • Inequitable • Inefficient • Increasingly Unaffordable

3. Preliminary Observations

4. Preliminary Observations • Despite growing cost problem, everyone is scared of dealing with costs. • Commissions in Europe dedicated to priority setting have always put dealing with cost as a low principle. • Politicians are loathe to tell their constituencies that they cannot get every medical treatment they want.

5. The System of the Future • Through many different paths and after trying many alternatives, all developed countries will converge on a similar health care system: A social insurance system with market elements. Delivery will be organized into larger integrated groups that are held accountable for outcomes and performance.

6. The System of the Future The systems will have the following characteristics: • Universal benefit package for all citizens. • Universal benefit package will be tax financed. • Close link between tax level and benefit level. • Individuals will be able to purchase additional services and/or amenities with their own funds.

7. The System of the Future • Delivery will be through larger integrated groups that can collect and process information on patient outcomes and quality of care. • Technology assessment to develop and analyze objective data on outcomes, performance, and impact of medical interventions.

8. The System of the Future This health care system of the future will be: • Universal by covering all citizens. • Universal benefit package will constitute extensive, but not comprehensive benefits. • Tiered—the rich and those willing to devote more of their own personal resources will get more health care services than others.

9. DISCLAIMER The views expressed in this presentation do not represent the views of the NIH, DHHS, or any other government agency or official. These are not their views.

10. DISCLAIMER These views merely represent The Truth.

11. Fundamental Challenge The fundamental policy, economic, and ethical challenge for health care systems will be: What services will be in the Universal Benefit Package?

12. Comprehensive Universal Benefits Package • Universal benefit package contains all effective medical services. • This would be a comprehensive benefits package. • Only amenities are left out. • What would constitute effective services? • Services that improve quality of life or longevity.

13. Comprehensive Universal Benefits Package Comprehensive universal benefit package will be impossible in the near future. • Too costly. The problem with expensive treatments is that they too can improve quality or quantity of life. • The challenge is to get value for money, not to pay for every improvement in quality or quantity of life no matter how much.

14. Ethics and the Universal Benefits Package • Justice arises because we have limited resources. • Society cannot provide for all the needs and desires people have. Society must choose between health care and education or the environment or social security. • Within health care we must choose which services to guarantee and which to leave to individuals.

15. Ethics and the Universal Benefits Package • Providing less than a comprehensive universal benefits package is not only necessary in the sense that developed societies cannot afford to provide everything, it is just and ethical. • We should not apologize or feel bad about not being able to provide all services. We should feel that we are acting ethically.

16. Substantive Principles • The first effort was utilitarian—cost effectiveness analysis. • It was attacked for the usual anti-utilitarian reasons: • It did not take account of the distribution of benefits and burdens. • It emphasized saving lives—longevity—and greater numbers of people.

17. A CEA Advantage • A CEA cut-off of say $60,000 per QALY is useful because it sends a signal to developers of new medical technologies about what to pursue and how to allocate investment dollars. • This forces a change in investment strategy. • Shift away from expensive interventions. • Not just any health improvement but pursue the computer model of the same or more benefits for less money.

18. Substantive Principles • Other substantive principles for defining a universal benefits package failed because of a dilemma: • Either they were insufficiently specific to actually guide policymakers in allocating resources. • Or they were too specific in which case they were not neutral but highly controversial.

19. Substantive Principles • Daniels proposed the Principle of Fair Equality of Opportunity: Citizens should be guaranteed medical services needed to maintain, restore, or compensate for the loss of normal species-typical functioning and thereby guarantee people have a fair opportunity to pursue their personal life plans.

20. Substantive Principles • It provided for comprehensive benefits. • It failed to be sufficiently specific to guide policymakers on key questions, how to choose between: • The few with serious health problems or the many with less serious health problems. • Those with high probability of improvement or those with lower but not zero probability of improvement.

21. Substantive Principles • No consensus on substantive principles. • No substantive principles have proven to be sufficiently comprehensive to address all benefits and specific to guide decisions about which benefits to include.

22. Procedural Principles • To replace substantive principles, there has been a move to procedural principles for the just allocation of health care resources. • Daniels and Sabin proposed Accountability for Reasonableness based on 4 principles: • Publicity • Relevance • Appeals • Oversight

23. Procedural Principles • Problems with these principles: • Controversial—Embodies one conception of deliberative democracy and the very conception itself is controversial. • Incomplete—Fail to include empowerment of citizens, although Daniels and Sabin have begun to discuss public “engagement.”

24. Procedural Principles • There is a second sense of incompleteness. Procedural principles themselves will always require substantive principles for the actual decisions. • If policymakers are to publicly justify decisions based on relevant criteria, then they will need to invoke substantive principles or values of some kind for the justification. And these will be controversial.

25. Procedural Principles • Publicly disclosing relevant reasons inherently means citing values to justify decisions. • Citing values means weighing or emphasizing certain values over others. • This is not consistent with neutrality.

26. Procedural Principles • How should a board decide on including or excluding Avastin—a new agent for the treatment of metastatic colon cancer for patients who were not previously treated? • It prolongs median survival by about 5 months from 15 to 20 months. • It costs about $11,000 for 8 weeks of treatment.

27. Procedural Principles • How should a board decide on including or excluding ICSI—intracytoplasmic sperm injection? • It produces fertilized eggs for couples where the man produces few fertile sperm. • It costs about $12,500 per treatment.

28. Procedural Principles • Policymakers deciding on the universal benefits package will have to publicly justify whether such prolongations of life or fertility treatments are “worth it”. • Policymakers will have to invoke some substantive principles. These principle will weigh some values over other values, such as the value of reproduction for a flourishing human life or the value of longevity.

29. 3 Preliminary Conclusions

30. Embrace Controversy • There is—and always will be—disagreement about what to include in the universal benefits package. Disagreement is inherent. • Decisions about what to include in a universal benefits package are controversial because of pluralism. • People value many diverse things. • People weigh these values differently.

31. Embrace Controversy • Rather than keep fighting the fact that allocation decisions will be controversial we should acknowledge it as inherent and embrace it. • Thus, we need a procedure to permit diverse universal benefit packages within one society.

32. Embrace All Principles • The shift between procedural and substantive principles is illusory. • Any mechanism to decide the universal benefits package will incorporate both Procedural and Substantive principles. • Not an either/or situation. Must be both/and.

33. Embrace Pragmatism • All methods to decide universal benefits package have deficiencies—that is, have failed. • Skeptical that any one method will work. • Best approach is to actually be practical—make the decisions in an active iterative process.

34. How to Proceed? • We begin with the fairly generous benefit package people now get. • Close link it to ear marked taxes. • As tax receipts lag behind escalating medical costs, limits on services will be required. But cuts will not be all at once.

35. How to Proceed? • Basic procedural principles are clear: Daniels and Sabin’s 4 principles • Publicity • Relevance • Appeals • Oversight • With the most important 5th principle: empowerment.

36. Empowerment • Empowerment requires two things: • Ability to select a universal benefits package that fits (not necessarily perfectly but closely) with one’s values. • Ability to influence and shape the deliberations about what is in the universal benefits package.

37. Empowerment • Selection of a universal benefits package that fits with one’s values can be achieved relatively easily through market mechanisms.

38. Empowerment • Because delivery will be through larger integrated groups it is possible to have diverse universal benefits packages—different packages for each group. • This has deficiencies: • Makes it harder for consumers to compare different groups. • Makes a loophole for adverse selection.

39. Empowerment • One partial solution to these problems is to change from annual enrollment to every 3 year enrollment. • The makes people and insurance companies stay with one group over time and live with actual decisions.

40. Empowerment • Providing mechanisms to shape deliberations about universal benefits package is more difficult. • Requires procedures for input, such as: • Surveys. • Advisory councils. • CHAT activities. • For a to discuss trade-offs.

41. Empowerment • Participation in these events will only work if people see them as actually linked to concrete decisions about the universal benefits package.

42. Iterative • Decisions will have to be actively revised regularly and periodically. • No decision is “forever” because of changes in technology, changes in cost, changes in views. • Mistakes can be changed. • Substantive principles elucidated.

43. Substantive Principles • Different universal benefit packages will emphasize different values and be publicly justified by invoking the importance or lower importance of certain values. • No clear comprehensive set of substantive principles. • Principles will be emergent.

44. Values Nussbaum identifies 10 central functionings • Life Not die prematurely • Bodily health Reproductive health • Bodily integrity Mobility, free of disabilities and choice in reproduction • Senses, imagination Cognitive functioning and thought • Emotions Not depressed, anxious,

45. Values • Practical reasoning Cognitive reasoning • Affiliations Engage in social interaction and do productive work • Other species Connected to animals and nature • Play • Control over one’s environment

46. Values • These are threshold functionings. That is we want to get people to a minimal level of functioning. • Each is separate functioning. We want to realize each of the 10 functionings. • We are not satisfied by more of one while below the threshold for others.

47. Values • Nevertheless, not all the functionings need to be weighed the same. • Nussbaum emphasizes affiliation and practical reason as “first among equals.” • Others might emphasize life and bodily health.

48. Values • Some universal benefits packages may emphasize reproduction, others mobility, others longevity, others cognitive faculties, others more risk taking, etc. • Other universal benefits packages may emphasize health care over other goods, requiring higher outlays by members.

49. Values • Over time we will become clearer about the threshold and how important these different functionings are relative to each other. • This will allow us to choose between different services and who they are eligible based on whether the services get those people over the threshold of the functionings.

50. Advantage • Uncertainty of market for marginal medical technologies will reduce investment in these technologies. • “Home run” technologies or cost reducing technologies will be emphasized as more likely to be widely adopted by multiple health plans.