Adriane Gelpi, a doctoral candidate in Health Policy at Harvard and a fellow at the Edmond J. Safra Center for Ethics, describes the intricate ethics and politics of health care resource allocation in Chile. This was originally posted on the Safra Center blog.
Imagine that you are the Minister of Health for Chile, a middle-income country with a nearly universal health system. You face a predicament that pops up regularly. The Chilean health system provides a politically popular package of health interventions to meet the medical needs of its citizens. At the moment, 80 conditions are covered, leaving those suffering from other conditions without access to care for their serious medical needs. You would like to add another benefit to the existing package of services, but the Minister of Finance has given you a hard ceiling on the budget. You cannot add a service without subtracting another, a politically perilous move.
So the task before you is to decide how to allocate the available health resources in the best way possible. But questions immediately arise: how do you define “best”? Many goals for this allocation could be reasonable. For example, you may decide to focus on outcomes, including maximizing overall heath gain, controlling expenditures, addressing diseases with high prevalence, a concern for social justice, a focus on vulnerable populations, or investment in capacity.
What should be covered? What will not be covered? More fundamentally, on what criteria will you base your decision? And once you know what substantive criteria will matter, how will you structure the process of allocating new benefits? Then once made, how will you justify the decision you reached?
As this example shows, ethical issues enter questions about health resource allocation at every stage of deliberation.
In fact, given the life and death consequences of health care issues, asking such questions about health resource allocation really amounts to a more wrenching question. In the words of economist Victor Fuchs, health priority setting asks, “who shall live?”
Conference in Chile: Ethics of Priority Setting in Health
Growing recognition of priority setting for heath as an ethical concern has motivated countries to seek out guidance. For that reason, in late March 2013, Professor Norman Daniels and I found ourselves on a long overnight flight from the snowy early spring of Boston to the sunny early autumn of Santiago.
Daniels, a philosopher at the Harvard School of Public Health, and I, a Safra Lab Fellow and PhD Candidate in Health Policy and Ethics, were traveling to Chile to lead a two-day conference on the “The Role of Ethics in Priority Setting for Health,” co-organized by the Chilean Ministry of Health and Carla Saenz, PhD, Regional Bioethics Advisor of the Pan American Health Organization.
Held at the United Nations in Santiago, the conference brought together a wide range of attendees: from academics to physicians to Ministry of Health officials to bioethicists to economists. Attendees also came from abroad: one from Argentina, another from Peru. All showed up driven by an interest in thinking through how countries could make better and fairer decisions about health coverage.
Many Ministers of Health have no training in public health ethics in general, or priority setting in particular. In part, this reflects the broader fact that the ethics of priority setting for health is a nascent field. While understandable, this knowledge gap is not benign; it has real-world implications. If health ministers lack the analytic tools to evaluate the ethics of allocation decisions, it is more likely that ethical concerns will play a limited role in setting priorities for health systems. Expanding training in public health ethics, through conferences such as this one, will arm ministers with more tools to fully analyze the problems they face.
Structure of the Conference
The first morning Daniels and I opened the conference. We each delivered a distinct, but coordinated, keynote address: first, Daniels presented a broad overview of the need for an ethics of fair priority setting, and I built on this theoretical foundation by describing some real-world challenges that will arise when implementing any new process of fair policymaking.
Dr. Ximena Aguilera, one of the architects of Chile’s benefits package, provided an overview of the plan’s origins and historical evolution. Demand for expanded services, and the political gains that accompany such expansions, make it tempting to add more and more treatments. Yet without a corresponding increase in the budget, expanding the number of covered diseases would lead to shallower and worse treatment options. Nonetheless, political penalties would follow from the removal of any intervention from the existing list.
The next two days of sessions centered on group discussion of three case studies, developed by officials from the Chilean Ministry of Bioethics. Through the case studies, conference participants wrestled with specific and pressing policy issues facing the Chilean Ministry of Health.
Two of the cases discussed:
- Rare Diseases: should governments cover treatment for diseases that affect only a tiny portion of the population? Many of the existing treatments for such conditions are extravagantly costly and may have limited efficacy. Why should such patients suffer because they have the bad luck to get a rare disease? Many of these diseases lack effective treatments because of the lack of pharmaceutical incentives to invest in research and development. Should the government subsidize such research?
- Beds in Intensive Care Units: By law, Chilean hospitals now allow all patients, regardless of whether they are covered under private or public insurance, to receive care at the closest hospital. This system has led to unintended problems, as publicly covered patients who end up in private hospitals often remain there once the acute period is over because there are insufficient ICU beds in the public hospitals. The government absorbs the higher costs of treatment in a private hospital.
Many Questions, Few Answers
Two cross-cutting themes emerged from the discussion of the cases are worth mentioning:
Searching for Shortcuts: Human Rights and Cost-Effectiveness Analysis
Faced with one of the difficult cases, many participants asserted that human rights should dissolve the predicament. Given that Chile recognizes a human right to health care, one professor of public health argued that providing the patient the care he has a right to is the only ethical choice. What other conclusion would we draw?
Such comments reflect the common temptation to rely on what many to seem to view as objective measures, such as cost-effectiveness analysis and human rights, to answer the hard questions about priority setting quickly. Both approaches share a single pre-defined goal: in the case of cost-effectiveness, the goal is maximizing QALYs; in the case of human rights, the goal is to ensure the protection of certain legal entitlements.
In Latin America, the right to health is often enshrined in the constitution. Thus, many in the audience seemed to view human rights as a trump card, and a solution to priority setting issues. Yet this fallback to human rights language can be a way to avoid acknowledging the need for tradeoffs. It is not a criticism of human rights theory to note that it does not answer all the questions about how real-world Ministries of Health should face real-world problems, such as staying within a budget. No human right to health care will magically expand the budget or allow all pressing medical needs to be covered.
Ethical evaluation and justification is still necessary, regardless of one’s commitment to human rights or the results of a cost-effectiveness study.
Citizen Participation and Advocacy
A second topic of vigorous discussion concerned the proper role of the public in the priority setting process. There was consensus in the group on the facts: they all agreed that in Chile certain powerful advocacy groups had effectively leveraged their might to get their pet disease covered by the benefit package.
For example, one speaker described how the Chilean Multiple Sclerosis Association bypassed the standard decision-making process to obtain coverage for MS. As a well-funded and organized group, they knew how to repeatedly “knock on the door” of the Ministry. They requested multiple hearings about the need to cover MS. Over time, these arguments bore fruit and MS was added to the list of covered conditions.
Yet opinions diverged about how to interpret the influence of special interest groups on the priority setting process. There is no problem, one high level official argued. “This is a good thing because the public should be able to express their voice, and in this case their voice resulted in getting their demands met. This is democracy.”
When asked if the MS example offered a good model for citizen participation, one official answered, “Yes. It is important that the citizens have a voice.”
Others, including me, expressed concern at this positive spin on the MS case. Even worse than its ad hoc nature, the case of MS clearly reflects the direct connection between money and social power and political results. The relative socioeconomic power of the MS group made it possible for them to gain an audience with the Ministry in the first place, and then to persuade the government to add treatment for MS to the benefit package.
This anecdote also highlights the importance of political context in shaping ethical perceptions. In Chile, the Pinochet dictatorship only fell in 1990, and it still casts a long shadow. Given this legacy of authoritarianism, we might argue that such demonstrations of citizen power offered a sign of progress, not corruption. In the face of this history, Chile’s growing responsiveness and openness to the arguments of its citizenry was an explicit source of pride to certain attendees. The MS anecdote underscored this perceived political improvement.
Seeking guidance from the general public is critical, but the challenge is to do so fairly. For example, Chilean government has held “social round tables” in the past, which sought out public opinion. They have always conducted social surveys of societal preferences about priorities in health. From these efforts came the finding, noted by Dr. Aguilera, that Chilean society strongly values prioritizing children over the elderly. Public opinion can insure that policies reflect social preferences, and also increase trust in the Ministry and normative and political legitimacy.
Such examples of interest groups influencing policy, it should be noted, are not at all unique to Chile. (Further, as other Safra Center research has shown, it is not unique to health care either). Many countries lack systematic priority setting processes and therefore make decisions about health policies in an ad hoc manner, choosing whether to cover a treatment or not based on the arbitrary application of varying criteria.
Priority Setting in Health as a Problem of Institutional Corruption
The Chilean conference reaffirmed the often-asserted truism that reasonable people will disagree about fair decision making processes. While some disagreement may be inevitable, common approaches to ensuring fair priority setting process are often are inadequate. For example, many guidelines, or frameworks, aim to generate lists of “good” factors that will promote fair policymaking, along with “bad factors” that should be excluded from a fair process. A Ministry can then evaluate its own process against the checklist of good principles and features to avoid.
However, a process can meet all the defined criteria and still fall short. For example, public participation is a noble goal. But as the Chilean MS case shows, public participation can subvert other important priorities.
The Chilean conference highlighted just how complex public health resource allocation can be. Lists of criteria–substantive or procedural, positive or negative—alone cannot prevent rationalization of decisions unduly influenced by special-interest pressure groups. In fact, the enumeration of such lists may increase the possibility of post-hoc ethical justification of illegitimately reached decisions, i.e. ones that invoke reasonable principles without having considered the universe of relevant arguments and facts.
While there is no easy solution to this problem, I propose that viewing priority setting in health through the lens of institutional corruption (IC) may be illuminating. The definition of IC includes the concept of a force causing magnetic deviation from the “true north” of an institution. This image begins identify a different way of describing the problem of health priority setting. The IC lens frames undue influences as magnetic forces that pull a Ministry of Health away from its true mission. This is valuable because while we can see this pull exerting influence in real cases of health resource allocation, we have lacked a holistic analytic framework for diagnosing such problems.
Still unanswered, however, is the question of how the “true north” for Ministries of Health should be defined.
One goal for future research, then, is to begin to enumerate the myriad ways that a health priority setting process can go astray or deviate from what we would intuitively think is a proper allocation procedure. This enumeration can begin prior to defining a “true north” and without a clear vision of idealized decision making, although such theoretical work would be complementary. Indeed, institutions will need to make decisions about their goals and procedural decision making processes without an overarching theoretical framework.
Eventually, the inductive process of identifying these deviations could help define what proper priority setting might look like, and aid in developing practices that expunge the sorts of undue influences that distort policy making.
Viewing priority setting for health as a problem of institutional corruption, therefore, is far from condemnatory. Rather, such a reframing provides a path towards more ethical processes by opening up possibilities for innovation and creativity.
In other words, one lesson from Chile is that we need to “build the compass” that will help define “true north” for public health policymaking institutions. Once armed with such a compass, countries like Chile can begin to align their practices in a way that will keep the ship of state on an ethical course.