Professor Niels Lynöe
Enheten för medicinsk etik
Karolinska Institutet

2011-2015

The purpose of this project was to interpret and critically evaluate the principles of cost-efficiency, need, and responsibility as grounds for prioritizing in health care. This includes investigating which interpretations of each respective principle are most reasonable and how they should be weighted in relation to each other. The guiding ambition of the project is to make the analysis useful for actual prioritizations in health care. The latter aim was achieved by applying the principles to three main areas: new expensive treatments for rare disorders (so called orphan drugs), enhancement (i.e. improving functioning by medical means for persons considered to be healthy), and liver transplantations. The project stayed true to its original purpose throughout the project, but focused more, orphan drugs and enhancement, and less on liver transplants than originally anticipated.

One of the most important results of the project was that all three principles are subject to many interpretations, but that some of these interpretations are markedly more plausible than others. For instance, the principle of need should not be understood as a traditional sufficientarian principle with one absolute threshold above which none have any claim to health care and below which everyone does. More plausibly, principles of need should be understood as gradual prioritarian principles giving more weight to those worse off in terms of health related quality of life. It is a more open question to what extent principles of need should also include purely egalitarian considerations. This is not only important for the theory of just allocation of health care resources, but also of vital practical importance, since some interpretations of principles of need are off the table to start with.

Another important result is that traditional rules of rescue, minding the needs of identifiable individuals before so called statistical ones, are difficult to defend. Statistical individuals are individuals that are benefited by certain health care interventions, e.g. drugs directed to broad groups of people with hypertension, but it is impossible to say, both before and after treatment, whom in the population that actually has benefited from the treatment, i.e., who would not have survived was it not for the treatment. This is also of practical importance, since this undermines the rationale for giving special economic advantages to orphan drugs, something that has been the rule in most OECD countries the last decades.

The project, although mainly philosophical, has consisted of empirical work. Primarily, we looked into the extent to which physicians reason in terms of responsibility when deciding how to prioritize in health care. Our studies indicate that both the general population and physicians are more inclined to treat a non-smoking patient than a smoking one, where this is the only difference between the patients. This is aligned to the principle of responsibility as usually understood, but clearly runs counter to the official Swedish health care norms. In this research, we also developed a method for identifying tacit unofficial values that are incompatible with the official norms to which health care personnel should adhere.

Answering the questions of the project led to new questions that needs to be tackled in order to get a fuller view on how to prioritize within health care. Here are some examples:

The project concluded that egalitarian considerations is a part of a reasonable interpretation of principles of need and that this minimally include giving more weight to those worse off (even if this means a net loss of e.g. QALYs (quality adjusted life years)). However, it remains unclear exactly how much more weight should be given. Furthermore, it remains unclear if and to what extent more radical egalitarian views should be included as well.

The project concluded that the version of egalitarianism that favors equality between whole lives implies that much more of health care resources are directed to younger patients compared to the version of egalitarianism favoring equality between individuals here and now (regardless of how much welfare people have received in the past). Some members of the project also argued that "whole life" egalitarianism is much more plausible than momentary egalitarianism. If this argument is sound, health care most likely spend way too much resources on elder patients. Would this conclusion, if implemented, discriminate against elder patients? In general: should age be a factor taken into consideration when prioritizing health care and, if so, how?

The project concluded that especially the principle of need gives strong support for a publically funded health care system offering at least some basic health care services. However, it remains silent to what extent co-financing within such a system may be defensible.

Perhaps more surprisingly, the project concluded that the principle of need may be used to defend public spending on medical enhancement. However, the specific extent to which that is defensible remains unclear.

The project concluded that both the principle of cost-efficiency and, more surprisingly, the principle of need in their most plausible interpretations allow for aggregation between different patients and patient groups. That is, it is sometimes acceptable to allow the greater numbers lesser needs override the smaller numbers lesser needs according to the best versions of both these principles. However, what kinds of aggregations that are morally acceptable remains at least somewhat unclear.

The project concluded that some physicians seem to decide on whether or not to offer treatment on the basis of patient responsibility, despite the fact that this is not allowed in Sweden. However, this finding was on a group level. We do not know more specifically how physicians and other health care personnel reason when it comes to patients' responsibility. This would require more in-depth interviews and other qualitative studies.

The project has been part of different national and international collaborations from the start. Nationally, we have worked close together with The National Centre for Priority Setting in Health Care at Linköping University, for instance by tying one of their doctoral students (Erik Gustavsson) to the project. One of our senior researcher (Niklas Juth) has been a supervisor of Gustafsson together with professor Lars Sandman. In a research preparing workshop, financed by RJ, in January 2011, the project also formed an international reference group consisting of: Prof. Per Carlsson, Prioriteringscentrum, Linköping University, Prof. Marc Fleurbaey, Univ. Paris Descartes, Dr. Katharina Hauck, Imperial College, London, Prof. Lars Sandman, Borås College, Prof. Julian Savulescu, Oxford University, and Prof. Shlomi Segal, Hebrew University of Jerusalem. The international collaborations have extended during the course of the project. In October 2015, the project organized an international conference in Barcelona, with the following invited speakers: Prof. Paula Casal, Universitat Pompeu Fabra, Barcelona, Prof. Andrew Williams, Universitat Pompeu Fabra, Barcelona, Dr. Itziar de Lecuona, University of Barcelona, Prof. Erik Schokkaert, KU Leuven, Leuven, Prof. Alberto Carrio, Universitat Pompeu Fabra, Barcelona, Prof. José Antonio Seoane Rodriguez, University of A Coruña, A Coruña, and Prof. Ezequiel Paez, Universitat Pompeu Fabra, Barcelona (besides the Swedish presenters).

We have also tried to publically disseminate our results in various ways. One example is our webpage (see below). Another is giving interviews to media about questions of priority setting in health care, e.g. Dagens eko and SBUs paper. Moreover, we have collaborated with the Ethics delegation in the Swedish Society of Medicine regarding how to understand and implement the principle of need in health care during 2012. As well, we arranged a public seminar on priority setting within disastrous situations in May 2015 at Karolinska institutet. We will continue to use our contacts within the official and health care sector to try to get support for our conclusions regarding health care priorities.

In one of the most important publications of the project: "Challenges for Principles of Need in Health Care" the author argues that the concept of need presupposes some goal; someone needs something in order to achieve something (the goal in question). Hence, principles of need are vacuous if not wedded to an idea about what are the proper goals of health care. If this is right, questions of justice and rightness are intimately tied to question of value and goodness, at least in health care. This means that important practical questions, e.g. about how to prioritize chronically disabling condition in relation to more momentary suffering, cannot be settled without first taking a stand about what should be considered the goals and values of health care.

Another important publication presents a combined philosophical and empirical argument. The empirical findings that the study present, indicates that physicians' factual judgements (about what is medically indicated) is determined by their normative views (on whether treatment should be offered or not at all in the first place). If the is right, the value neutral physician is a piper's dream, something that physicians need to recognize and take into account in their decision making.

We make the project and its articles publically accessible through the project's own website (see Publication list). The monographs and articles in pipeline will be made accessible in the same way.

Publications

Arrhenius G. Egalitarian Concerns and Population Change. In Eyal N, Hurst SA, Norheim OF, Wikler D (eds.) Measurement and Ethical Evaluation of Inequalities in Health: Concepts, Measures, and Ethics, Oxford: Oxford University Press, 2013.

Björk J, Lynöe N, Juth N. Are smokers less deserving of expensive treatment? A randomised controlled trial that goes beyond official values. BMC Medical Ethics, 16:28, 2015. DOI: 10.1186/s12910-015-0019-7

Björk J, Lynöe N, Juth N. Empirical and philosophical analysis of physicians’ judgments of medical indications. Submitted to Clinical Ethics, 2015.

Fröding B, Juth N. Cognitive enhancement and the principle of need. Neuroethics, Vol. 8, No.3, 2015. DOI 10.1007/s12152-015-9234-7

Gustavsson E. Juth N. Principles of Need and the Aggregation Thesis. Submitted to Utilitas 2015.

Hansson S.O. Medical Ethics and New Public Management in Sweden. Cambridge Quarterly of Healthcare Ethics, 23, 2014.

Jebari K. Disease prioritarianism: a flawed principle. Medicine, Health Care and Philosophy, 2015 DOI 10.1007/s11019-015-9649-2

Juth, N. For the sake of justice: Should we prioritize rare diseases? Health Care Analysis, 2014. Published before print: DOI: 10.1007/s10728-014-0284-5

Juth N. Challenges for principles of needs in health care. Health Care Analysis, Vol. 23, Issue 1, 2015. DOI: 10.1007/s10728-013-0242-7

Juth N. Behovsprincipen i vården. (The Principle of Need in Health Care.) Tidskrift för politisk filosofi, No. 2, 2011.

Tamburrini C. Luck egalitarianism and patient responsibility in health care: a defence without excuses. Forthcoming 2016.

Tännsjö T. Utilitarianism or Prioritarianism? Utilitas, Vol. 27, Issue 02, 2015.

Tännsjö T. Health Care Priorities. Theory and Practice. Monograph. Forthcoming 2016.